Radiation necessary in an early stage cancer

mdb

GayleD, yeah, you said it. It is a very personal decision. All of the studies are readily available on the Internet. For the people who go go looking for them. Yet, as people are different, they can read the same study, and come away with radically different conclusions.

Yet just know, that we are in the minority, on this board. If you ultimately do decide, to not proceed with your radiation, scheduled for 9/12. Most women, on this board, have the radiation. For DCIS, IDC, mastectomy, whatever.  Because you said it. "The medical profession in general is more willing to "err on the side of caution." 

I was not willing, to do that. And it sounds like you may not be willing to do that, either. Although, while you're leaning, against it, it still sounds like you have time, to change your mind. And go through, with the radiation. And if you do, then that's what's right, for you. 

I'll just say that this breastcancer.org board was critical, for me, in August-October, 2006, when I was going through my radiation decision. And I'll tell you, GayleD, it was the posts of MarieKelley that I read, back in that time frame that ultimately swayed, my decision. To not do, the radiation.

I'd already read all of the studies that she posted. It was just her ... sanity. Her common sense. Her just saying, "Let's just step back, and look at the facts."

I had looked at all of the studies. But I'd just had a breast cancer diagnosis. And surgery and a huge hematoma. I was not capable, of making rational decisions, initially. I was ignoring the facts, being influenced, by these Rad docs. Who just ASSUMED that I would just go along, with it. EVERYONE does. It's the "standard of care."

And they even offered me that study they offered you. The one, "a protocol looking at the effects of rads after lumpectomy (mammosite versus partial, etc.)"

Like you, I just said. NO.  That was my very first Rad Onc visit, and I told the woman, "I don't even know if I'm going to do this radiation." Prophetic.

And time went on,and I healed and as I've said, over and over, when push came to shove, at the SIM appt, I walked out. The radiation made no sense, to me. For my situation.

Sometimes, I wonder, why I'm still posting, here. I don't have breast cancer, anymore. And NOBODY wants to hear, what I have to say. All that I read, here, is about all of these women, embracing the radiation.

Yet, I've continued, because of what MarieKelley, did for me.  Made me finally realize what *I* wanted. But had been initially confused about. To NOT do, the radiation.

And I want to continue it. Even if my experience helps just one other, person. And thankfully, MarieKelley is still, here. The voice of common sense and reason. Plus, being very diplomatic, where I am not.

To just continue, to say, and maybe even you heard it, GayleD, that there IS a choice. A rational choice, a common sense, choice, to NOT do the radiation.  There really is. Not based on any "gut feelings," but real data.

Although, gut feelings, too, do enter into it. As well.

Funny you mention the Vitamin D, in my latest Leio tests, I had them do that blood test. They said mine was "18.6. Our normal range is 15.1 - 50). Deficiency is < 8."

Hah, 18.6 sounded on the low range.  I did get some Vitamin D3 supplements. 1000 IU. Figure, it couldn't hurt. Glad that you're working on that, too.

Appreciate the message, GayleD.

mdb

prayrv

I haven't looked at this thread in a while and must comment on the prostate cancer comment.  I'm not sure who said it, but the jist of it was if it was cut out and radiated, it won't come back.  BULLSH*T.  My husband's grandfather had pc and had all the radiation and stuff, it came back 10 years later and killed him.  Granted this was 25 & 35 years ago where treatments were not as advanced as they are now, but it still came back!  Sorry all - that just sort of got to me.  Cancer just sucks no matter how you look at it and treat it!!

 Hugs,

Trish

GayleD

Thanks, mdb.  I do appreciate your posts and your experience.  After all the reading that I did, I was surprised that nearly all of the posts that I read were more "pro" radiation, or more so that it was just an unquestionned acceptance.  I went searching for posts from people who elected not to do radiation.  

My surgeon's nurse said I do have time after the surgery on 9/12 to think about it and talk with a radiological oncologist.  I think I'll talk to my PCP too.  I like her a lot and she seems really informed on lots of medical issues.  She's the one that found my Vit. D deficiency and was very up on the literature with that.  Incidentally, she told me (and I've read this online too) that levels between 32 and 100 are "normal"...anything below 32 is low.  Maybe your scale was for a different variation of the test.  She said she likes to get her patients up to 55-60, especially if there's been any cancer diagnosis and that's consistent with what I've read elsewhere too.

I'm a social scientist and do a lot of research in my field, and I approach things like this the same way...try to find objective, scientific data from studies that seem to be well done.  A problem I have is that you can't just compare the effects of lumpectomy with or without radiation...those are not the only variables.  What about age, diet, nutrition, lifestyle, exercise, weight, family history, other factors???  Do they control for all of those other variables?  

I asked my surgeon's nurse if it was true that radiation can only be used once in an area and she said yes.  So, if I REALLY need radiation in the future in the area they are looking at, I'm out of luck.  I also asked her if radiation complicates reconstruction, should that be necessary in the future, and she said, yes.  And, as I'm sure you know, it can result in skin irritation ranging from minor to pretty bad, and other complications.  The skin on my breasts is very sensitive--the adhesive from the outermost biopsy bandage ripped skin off when I removed it two days later!Since my area is on the left side I worry about heart/lung "contamination" with the radiation too. 

Anyway, I think because I'm a sociologist and know that most everyone tends to put doctors on a pedestal and obey without question that I may be more inclined TO question.  I also understand that they are doing their job and want to cover their a#*.  I don't blame them for that, but it does not mean I have to go along willingly with what they suggest.  

All I can do is go in as informed as I can, ask lots of questions, get second opinions if I feel I want/need them, and then ultimately do what I think is right and best for me based on my unique situation.  I really appreciate input from people like you who have struggled with the same thing and have "bucked" the "standard recommended" treatment.  

Thanks again, and thanks for staying on these boards and posting for us who are new to the experience.

MarieKelly

"After all the reading that I did, I was surprised that nearly all of the posts that I read were more "pro" radiation, or more so that it was just an unquestionned acceptance. " 

Hello Gayle,

Regarding your statement above - I feel the same, athough I was never really surprised at the "unquestioned acceptance" - just continually dissappointed and dismayed at it.  It's basically the same though in all areas of medicine, not just the treatment of cancer. People generally do exactly what their doctors tell them to do and rarely question it. They seem to think that doctors are never wrong, always know exactly the right thing to do and that medicine is an exact science.  Even with those very few that do seriously question some aspect of a treatment plan,  most readily accept the standard response about the necessity of a certain treatment and don't question it any further than at a very basic level.  Few people truly understand the pros and cons of treatment delivered under a standard of care. They don't understand that what's determined to be an appropriate treatment for a group of similar patients viewed statistically as a whole may not necessarily be, and frequently isn't, an appropriate or necessary treatment for them individually.

I used to be an oncology nurse, but now work in an emergency room. One of my responsibilities in this position is to triage patients coming to the ER for care - and that entails collecting information about the current problem as well as past medical history, current medications etc. There's not a day that goes by that I don't encounter at least a handful of patients who have absolutely no clue about such basic things as why they're taking certain medications, why they had certain surgical procedures done on them or what medical problems they've been diagnosed with in the past. Aside from this daily handful, there's numerous other that have only a vague idea about their medical hisotry and medications. One would think that these people are mostly the elderly, but in fact many of them are young or middle aged...and they all generally respond to questions with the same type of answer - "I don't know what the pills are for, my doctor just told me to take it." OR "I don't know what that surgery was for, my doctor said I should have it done, so I said OK."  I'm sure anyone reading this might think I'm exaggerating, and I wish that were so, but it's the honest truth..and it's frightening. And especially frightening when people (some of them relatively young) are taking a list of prescribed medications as long as your arm and have no idea what most of them are for or why they've been prescribed! They just take them because their doctor told them to!  Unquestioned acceptance in it's worst form.

Anyway, I'm going off on my own personal tangent here, so enough of that. Just wanted to welcome you and say that I'm NOT one who practices unquestioned acceptance. I question the necessity of EVERYTHING. I refused radiation, refused tamoxifen, refused arimidex...and 4 and half years later, I'm still without a recurrence. There was absolutely no way I was going to accept any of this standard of care treatment for a small, grade 1 IDC/DCIS that had been removed with very wide, clear margins. My potential benefit from any of those standard of care treatments would have been minimal at best, but my potential long and short term potential consequences from the treatment would have been disproportionately higher than any miniscule benefit I might have recieved from them. 

MarieKelly

Gayle -

I noticed that your disease is left sided, so I thought you might be interested in the following. If they end up sending you to talk about radiation with a rad once, this might be something you can discuss with him/her. I've a feeling you're someone who won't just accept the standard response about radition concerns for left sided cancers.

: Int J Radiat Oncol Biol Phys. 2008 Mar 26. [Epub ahead of print] Links

Cardiac Dose from Tangential Breast Cancer Radiotherapy in the year 2006.

Taylor CW, Povall JM, McGale P, Nisbet A, Dodwell D, Smith JT, Darby SC.

Clinical Trial Service Unit, Oxford, United Kingdom.

          PURPOSE: To quantify the radiation doses received by the heart and coronary arteries from contemporary tangential breast or chest wall radiotherapy.

METHODS AND MATERIALS: Fifty consecutive patients with left-sided breast cancer and 5 consecutive patients with right-sided breast cancer treated at a large United Kingdom radiotherapy center during the year 2006 were selected. All patients were irradiated with 6- or 8-MV tangential beams to the breast or chest wall. For each dose plan, dose-volume histograms for the heart and left anterior descending (LAD) coronary artery were calculated. For 5 of the left-sided and all 5 right-sided patients, dose-volume histograms for the right and circumflex coronary arteries were also calculated. Detailed spatial assessment of dose to the LAD coronary artery was performed for 3 left-sided patients. RESULTS: For the 50 patients given left-sided irradiation, the average mean (SD) dose was 2.3 (0.7) Gy to the heart and 7.6 (4.5) Gy to the LAD coronary artery, with the distal LAD receiving the highest doses. The right and circumflex coronary arteries received approximately 2 Gy mean dose. Part of the heart received >20 Gy in 22 left-sided patients (44%). For the 5 patients given right-sided irradiation, average mean doses to all cardiac structures were in the range 1.2 to 2 Gy.

CONCLUSIONS: Heart dose from left-tangential radiotherapy has decreased considerably over the past 40 years, but part of the heart still receives >20 Gy for approximately half of left-sided patients. Cardiac dose for right-sided patients was generally from scattered irradiation alone.

PMID: 18374500 [PubMed - as supplied by publisher]

Related Articles

• Cardiac chamber and coronary artery doses associated with postmastectomy radiotherapy techniques to the chest wall and regional nodes. [Int J Radiat Oncol Biol Phys. 2004]
• Coronary artery findings after left-sided compared with right-sided radiation treatment for early-stage breast cancer. [J Clin Oncol. 2007]
• Myocardial perfusion changes in patients irradiated for left-sided breast cancer and correlation with coronary artery distribution. [Int J Radiat Oncol Biol Phys. 2003]
• Cardiac exposures in breast cancer radiotherapy: 1950s-1990s. [Int J Radiat Oncol Biol Phys. 2007]
• Coronary artery dosimetry in intact left breast irradiation. [Cancer J. 2001]

Shirlann

Hi gals, I have been following along with this thread, many good points.

The thing that worries me is, for some, it is not just recurrence that is a possiblity, but METASTASIS, which is not curable, it is fatal.  So saying, "I will just cut out a recurrence", is ignoring the very real possiblity of mets, not just a recurrence.  That, you will not just cut out, it will kill you.

Hugs, Shirlann 

MarieKelly

Shirlann,

I understand the point you're trying to make regarding concerns about the possibility of metastasis from a recurrence. However, not everyone diagnosed with breast cancer has an equal risk of either recurrence or metastatic disease and not all recurrences are necessarily destined to cause metastatic disease.,,and this is particularly true for a small, well differentiated breast cancer. So for someone with a small, grade one invasive tumor (and there are many of us out there) a plan to "just cut out a recurrence" rather than have radiation after a lumpectomy is a very reasonable decision.

A few days ago, information about a fairly recent meta-analysis on randomized trials examining the extent of surgery and radiotherapy on local recurrence was posted here on another thread by WorriedHubby. I later posted a link to that entire study on that same thread.  In that study report, there's mention about radiotherapy not always being done despite it being the general recommendation. It says the following -

"...It is, however, not always given, since later recurrence in a conserved breast can usually be removed by further surgery. Breast radiotherapy immediately after BCS could improve long-term survival (by comparison with a policy of watchful waiting for any local recurrence) ONLY IF life-threatening spread from tumour cells in the conserved breast would otherwise occur after BCS but before any clinically evident local recurrence was detected and treated, or if the local disease could then not be controlled adequately..."

So among the various different kinds of invasive breast cancer one could have, a small, grade 1 (and some small grade 2 that are molecularly similar to a grade 1) are the ones most likely to  not reccur at all if they were resected with wide margins and also the most likely to be successfully "cut out again" before becoming metastatic should they happen to reoccur.  If a small grade 1 comes back at you in a breast recurrence, the risk that it wouldn't be detected before becoming locally metastatic is very low because it's metastatic potential is very low to begin with and likewise, the risk that it couldn't then be adequately controlled locally is also extremely low, so just cutting it out once again is not the risk you seem to think it is. On the other hand, high grade breast cancer is a completely different story and literally, a completely different disease carrying a much higher risk of and with recurrence and requiring much more aggressive treatment.

GayleD

I just went back and read a lot of the previous activity on this thread, and all I can say is...Wow!  I didn't realize this was such a controversial issue!  Interestingly, I didn't perceive most of the posters as trying to push their views or decisions on anyone.  What I "heard" was people recounting their personal experience, their search for answers and information, and their decision-making process.  Most everyone stresses that it is a personal decision and the best course of treatment depends on multiple factors that are unique to each woman.  I wouldn't base my decision on the advice of one person (or more than one!) posting on an Internet message board anymore than I would base my decision on the advice of one doctor (or more than one!).  It's my responsibility as the caretaker of my body to be as informed as I can and to make a decision that works for me.  It seems logical to gather information from as many sources as possible! 

I don't think most people make a decision about any kind of cancer treatment lightly, but I also don't think most people actively do a lot of research before accepting their doctor's advice either.  I am nearly 100% resolved NOT to do radiation, and am completely 100% resolved not to take Tamoxifen even though my cells--haven't formed a tumor--are ER+ and PR+.  My "area" just a little over 1 cm and if my surgeon gets good clear margins, then I will absolutely not be doing rads.  Incidentally, I just read a recent, objective, scientific study that concluded after longitudinal analysis that with margins of at least 10mm, radiation has no signifiicant benefit over lumpectomy alone for DCIS--which is what I have.  

P.S.  Thank you so much, MarieKelly for your posts and the articles you attached.  Thanks also to everyone else who weighed in and provided input based on your experience.  It has all been very helpful to me.  My very best to everyone...whatever decision you make or have made!  

Shirlann

I hear what you are saying, but that would be assuming a recurrence ALWAYS occurs BEFORE a metastases, this is seldom the case.  You can recur, and you are no worse off than your original diagnosis, just very, very ticked off. OR you can metastasize,  WITH NO RECURRENCE or any other warning beforehand except bone pain, or liver pain or in the case of one of our sisters, she banged her arm on a door, broke it, and found that she had metastasized,  No recurrence at all.  Just so we all understand, cancer is deadly (think Elizabeth Edwards), she had no recurrence, just bone aches.  No chance for recovery (although you can live many years with bone mets, not so many with liver, lung or brain mets) for her.  She will die of breast cancer, and she had NO RECURRENCE, JUST METASTASIS.

Gayle, with just DCIS, is making a good decision, but she was never in danger of her life in the first place.  So this post is absolutely correct for her, but may not be for the "invasive" women.

Just be sure that everyone understands that while you surely may get a chance to "Just cut out a recurrence", most often, you don't, it is a metastases.

Dr. Susan Love, in her Breast Book, addresses this issue.  She states:  "In my surgical practice, I have had women with pin sized cancers that metastasized before treatment was over, then, I have had women with huge, lazy tumors, which I removed, that were never heard from again."  

It is the UNPREDICTABILITY of cancer that scares us all half silly.  And that, no one has yet been able to reliably figure out, who will metastasize and who won't.  Lots of good studes, as Marie and others have pointed out, and generally, size is a decent measure, but not always. 

Believe me, I am not nutty, I am sitting here right now, almost 10 years post treatment with a radiated rib that still hurts.  But I am here.  Sure, I might be here anyway, but this is the problem, without a crystal ball, no one knows.  Worrying about possible problems from radiation is very legitimate (and believe me, there are often problems) but it won't matter a whit if you are dead, if you get a problem from the radiation, it will seem very trivial, compared to death. 

Keeping us all honest, Shirlann 

AnnNYC

Hi all,

The only reason I'm posting here is to add some information to a statement a few pages back that said: "Prostate cancer... that's another cancer, that men can live their whole lives with. And it will never cause, their death."

I'm not sure I understand the context, and I don't think the poster really meant to say that prostate cancer never recurs, metastizes or causes death -- but I want to make sure we post correct information here on BC.org!

Men still die of prostate cancer!

From the website of the Prostate Cancer Foundation:

"Prostate cancer is the most common non-skin cancer in America, affecting 1 in 6 men.

In 2008, more than 186,000 men [in the U.S.] will be diagnosed with prostate cancer, and more than 28,000 men will die from the disease. One new case occurs every 2.5 minutes and a man dies from prostate cancer every 19 minutes.

It is estimated that there are more than 2 million American men currently living with prostate cancer."

As I said, I just wanted to clarify any misunderstanding!  I would hate for it to appear as if posters here are minimizing prostate cancer!

Anonymous

Shirlann, like you I don't understand why anybody would consider rejecting the advice of the best medical minds in the country regarding the necessity of Radiation after Lumpectomy, unless they want to gamble with their lives, but you just confused me.  Are you saying that radiation can prevent a metastatis without regard to a recurrence?  If there is metastasis without recurrence, isn't that likely from the original cancer and therefore the Radiation, which is only good for local control, would never have made a difference?  I thought Radiation is to prevent a local recurrence, and a possible metastasis if the recurrence is not dealt with early enough?

MarieKelly

Shirlann, what you wrote seems a bit confusing to me.  Essentially, you're saying that a person can become distantly metastatic WITHOUT ever having a breast recurrence - and of course, that's absolutely true. However, you also seem to be suggesting that radiation after lumpectomy will somehow prevent this (mets in the absence of a recurrence) from happening and I really don't think that's true.

Radiation after lumpectomy is a LOCAL treatment intended to, hopefully, kill off any remaing bits of cancer that might still remain in the breast or affected lymph nodes and thus prevent a possible future recurrence.  I use the word "hopefully" because obviously, it doesn't always accomplish the goal. If it did, there wouldn't be those with breast recurrences despite being radiated.  But short of preventing a possible recurrence and hopefully killing off any cells that might be left behind, it would do nothing at all to treat distant metastatic disease which was already simmering at the time the course of radiation begins, and it would likewise do nothing to prevent distant metastatic disease if it already existed. 

Having breast radiation after lumpectomy is not going to prevent someone from developing metastatic disease if they already have it - and these are the kinds of people you're talking about in the section I quoted from you below, who suddently pop up with mets during or after having been through treatment despite them not having had a local recurrence first.  People who develop metastatic disease without a breast recurrence, do so because the horse was already out grazing in the pasture by the time someone got around to shutting the barn door. This happens frequently with high grade, aggressive types of BC but it happens very infrequently with grade 1, well differentiated BC's.   

When a high grade, aggressive tumor reoccurs in breast tissue, it's a major concern because it's metastatic potential is usually very high - and that's why doing every available treatment is so important for these types. When a low grade, non-aggressive cancer reoccurs in breast tissue, it's metastatic potential is usually low as well - so when a low grade reoccurs, the threat associated with it pales in comparison to the threat of a high grade reoccurance.   So, certain low grades CAN be "just cut out" with minimal risk of suffering any consequences from the recurrence. For high grades, the risk is too great.

And just one more comment on that quote from Dr. Love about "women with huge, lazy tumors". Those huge, lazy ones she's describing are the low grade, well differentiated breast cancers. You can be assured of this because that description would never be used to describe a high grade breast cancer. Low grades often sit there and get very large before they become metastatic...and sometimes they never do despite being very, very large. High grades could, and often do, become metastatic when they're very small - which is precisely why it's so important to treat the hell out of an aggressive tumor and not nearly as important to do the same for a low grade. 

Shirlann wrote:

I hear what you are saying, but that would be assuming a recurrence ALWAYS occurs BEFORE a metastases, this is seldom the case.  You can recur, and you are no worse off than your original diagnosis, just very, very ticked off. OR you can metastasize,  WITH NO RECURRENCE or any other warning beforehand except bone pain, or liver pain or in the case of one of our sisters, she banged her arm on a door, broke it, and found that she had metastasized,  No recurrence at all.  Just so we all understand, cancer is deadly (think Elizabeth Edwards), she had no recurrence, just bone aches.  No chance for recovery (although you can live many years with bone mets, not so many with liver, lung or brain mets) for her.  She will die of breast cancer, and she had NO RECURRENCE, JUST METASTASIS.

MarieKelly

WorriedHubby -

I was composing a response to Shirlann when you posted and now see that you were as confused as I was regarding her statements.  You got it right - radiation isn't going to prevent distant mets when there's been no recurrence.in the breast. It's also not going to prevent mets from the cancer that's being radiated if the cancer has already taken up distant residence before the radiation begins.  

Shirlann

I hear you, Marie, but isn't it possible to have cells left from the orginal tumor migrate to the lymph system or blood system without first becoming a recurrence?  I went to UCLA, to the Susan G. Komen Breast Cancer Center, and this is what I was told.  That mets are from either the original tumor, which has not been whacked, or, can't be whacked good enough, or, cells left behind (not radiated off).  Because I know two women who meted out without any recurrence of their cancers in the breast, one just got yellow (liver mets) and the one with the broken arm.  No recurrence with either of these two, and I knew them.  This is interesting.  We all know that rads are to "clean up" the original site, and I did not believe that if rads were not done, you could only met out with a new cancer of the breast.  This is not what I was told.  Sure could be wrong, but I know these two women had no new BC's.  (great study, 2 people)! I am going over to the met site and ask if everyone had a recurrence before mets.  BUT, who is to know if the original cancer was ever truly successfully cleared, or if the mets were because the original site was not cleaned up with rads?  I don't know the answer to this.

Oh, another interesting subject, Prostate CA.  As many as 80% of men, after the age of 80, have prostate cancer, but only 10% (at any age) will die of it.  So with the new PSA testing, tons of men are being treated that do not need a thing, but who knows which 10%.  Once it is found, everyone wants to treat it.  And it always, always causes impotence and often incontinence, both of the bladder and bowels in some cases.  But only one doctor I know of treats this disease with hormone therapy, leaving the men intact.  He has had hell to pay from the urologists, whose whole living is Prostate Cancer treatment.  sheeesh 

Hugs, Shirlann 

GayleD

worriedhubby:  

The "best medical minds" don't agree that radiation is always necessary after lumpectomy.  Whether or not it is more beneficial, less beneficial, or likely not to be beneficial depends on multiple factors....and it is always likely to have side effects that may not make it worthwhile.  Any medical professional who would prescribe radiation for anyone and everyone is not one of the "best medical minds" around. 

Shirlann

Okay, sisters, I posted the question on the met board, but does anyone know how we can tell what failed?  The chemo?  The rads?  Or was the cancer already to far gone?  Or too aggressive?  Lots of unknowns, but MarieKelly, what do you think?

Hugs, Shirlann 

Jellydonut

For whatever it is worth I did NOT have radiation after lumpectomy in 2002, nor did I have chemo, nor do I take AI's.  Since 2002, I've had two recurrences in the same breast (left) and about 2 years ago had a bilateral mastectomy. 

When I met with the radiologist in 2002, he did state that because of where the tumor was located that my lung would be damaged. He was not happy when I refused the radiation and he screamed and yelled at me like I was  bad child.

I am very much at peace with my decisions.  My family doctor accepts me for who I am and so does my oncologist (I see him for scans and blood work only.)

Treatment is a personal decision and you MUST be at peace with what you choose.

Jelly

GayleD

It's a great question, Shirlann, but you are right...there are lots of unknowns and lots of factors to consider with the various forms of treatment or treatments that are often concurrent.  And...what about non-treatment factors that can affect cancer like diet/nutrition, lifestyle, weight, family history/genetics.  I don't think there is one answer--or at least one easily identifiable answer.

Shirlann

Yeah, Gayle, that is the big problem.  And so often, like my poor dear daughter-in-law, dead at 45 of Pancreatic Cancer.  She never smoked or drank (not that this would have made any difference, anyway).  This whole thing is a friggin' crapshoot.

Hugs and kisses to all my dear sisters, Shirlann 

MarieKelly

Shirlann, yes of course it's possible that a few cells left behind after a lumpectomy might be responsibile for causing distant mets. Anything is possible, but unless the margins weren't wide enough or the surgeon seeded the area by using poor surgical technique when the tumor was removed, it's not a very likely end result. Very wide margins in the key to preventing a local recurrence. They currently seem to think 1 cm is enough, but I've read research saying that it really needs to be a bare minimum of 2 cm because they were able to detect a few of the cells hanging that far out in the periphery. If you get very wide margins with a lumpectomy, the rate of recurrence drops significantly. The wider the margin, the lower the rate of recurrence.

Yes, the general purpose of rads is to "clean up" the original lumpectomy site, but if the margins are wide enough and the surgeon meticulous enough, then there's nothing to clean up. And that's why the majority never have a local recurrence after lumpectomy, with or without radiation  and regardless of what grade their tumor was. When I saw my surgeon just before being wheeled into the OR for my lumpectomy, I gave him two instructions, the first of which I also wrote into the consent form 1) do not take any more than 3 nodes no matter what you find in there and 2) make sure the margins are huge even if the cosmetic result suffers because of it. As it turned out, he got huge margins as well as a perfect cosmetic result. He's my hero! 

But as I said previously, these people you know and hear about suddenly popping up with mets seemingly out of nowhere in all probablity were ALREADY metastatic at diagnosis...and breast radiation wouldn't have made any difference for them. It's far more likely they already were distantly metastatic at diagnosis than that a few stray cells managed to migrate into the blood or lymphatics before they were able to be radiated.  Remember, even an aggressive tumor can take a few years for cells to grow large enough to be detected on mammos and other scans. These people appear to be NED for a while...but only until it becomes large enough to be detected. It them seems like it came out of nowhere, but it in reality, it was likely there all along and just too small to detect.  And again, these kinds of surprises usually don't happen with small, low grade tumors. It can, but it's the exception rather then the norm. 

Anonymous

Okay MarieKelly, I have another question for you.  My W was diagnosed with 1.3 cm tumor, grade 2, both lobular and ductal components,  through an excisional biopsy which was "positive" at the margins.  As I understand it, the positive margins could simply be a result of how the Pathologist handled, stained or rolled the specimen.  The re-excision lumpectomy, this time by a Surgical Oncologist at a National Cancer Center was negative for any cancer, and the Sentinal Node biopsy too was negative. 

So  if the re-excision was negative, how would we have determined the margins?  And if Pathologists can effect the results simply by how they position the tissue, how accurate are the margin calculations anyway?  Can they be relied on?  And finally,  with the above, any possibility my W could have safely avoided radiation in your opinion? 

mdb

Trish, read this article, re Prostate Cancer.

http://www.healingcancernaturally.com/naturalcancer-curetestimonials.html#cancer_over-diagnosing_over-treatment

pinoideae

I huh? worriedhubb.  Excisional biopsy positive at margins, and re-excision negative for any cancer?  We need to remember that cancer can hide in its earliest form from the lab tests can it not?  Safe margins are dependent on tumor size and grade as well (there is no one safe margin fits all, in my belief...but hey, I am not a scientist).  Studies have shown that patients with close or positive tumor margins at lumpectomy who undergo re-excision with no cancer in the re-excision specimen have a better-than-average prognosis.  However, close or positive margins are a marker for aggressive disease instead of a mere source of tumor recurrence, but these can be

MarieKelly

WorriedHubby -

I've read that too - about false positive margins.  Through the years here I noticed that a few people mentioned that their lumpectomy specimens had tumor at a margin but then the re-excision had no evidence at all of of any cancer in it. I wondered how that could be since afterall, if there's cancerous cells at the surgical margin wouldn't you expect that the re-excison to make the margin wider would have cancer cells in it since removing that resicual disease is the whole the purpose of going back in? If you go back in to get the residual disease and it's not in the re-exision tissue, then where did it go?

So me being me, I went looking for an answer and what I came up with is the same explaination that you did regarding how the specimen is handled.  One would think the path exam for whether or not the margins are clear would be a straightforward thing, but apparently there are false positives with this as well. I also wonder if the same handling technique could produce false negatives too.

Here's a link to a website for a company promoting the use of their transport device which they say, eliminates this "pancaking" compression effect and therefore greatly reduces the number of re-excisions. Especially note the visual example on page 22.

http://www.senobox.com/uploads/BCT_Technical_Presentation.pdf

As far as how you would determine what the margins actually are now after the re-excision - I really don't know other than to suggest you look at both path reports and see if it either states it directly or offers other information which combined, would allow you to figure it out.  My surgical path doesn't actually state any measurements for the margin width - just states "the surgical margins are free of malignancy". However, since the tumor was only about 1 cm, but the lumpectomy specimen measured  7.5  X  5.5  X 3 cm in maximal dimension, I think it's more than reasonable to assume my smallest margin was at or about 2 cm. You can always just call the pathology department, and that might get you a more definitive answer.

And regarding you other question about my opinion as to whether or not your wife could have safely avoided radiation.  As you've probably already noticed from reading clinical trial results and other assorted information, the majority of those who have a lumpectomy with or without radiation don't have a local recurrence. Those most likely to NOT reoccur are small, low grades with wide margins... and the risk goes up from there with numerous variables affecting the level of risk for reoccurence.  So whether or not your wife could have "safely" avoided radiation depends on how you define the word "safely". The medical community basically defines it as a risk of recurrence less than 5%. Because my tumor was small and low grade, I'm willing to accept a recurrence risk that's higher than 5%. To me, "safely" means that the odds are greatly in my favor that I won't have a recurence COMBINED with the high probability that if there is a recurrence because something was left behind that grows into another tumor, it's also going to be the same low grade, non-aggressive, low metastatic potential cancer that it was at original diagnosis. 

But your wife doesn't have the same tumor characteristics that I had. Hers is a grade 2, she had both lobular and ductal characteristics, some issues about adequate margins and most importantly, a husband is who is not at all comfortable with making independent medical treatment decisions in going against the standards of care.  Could she have been in the majority that wouldn't have reoccured with radiation??  Sure she could have, and probably would have been since the majority don't reoccur... but her risk is a bit higher than those with the lowest risk and people who make these kinds of decision need to be confident about them. I told you a while back when we we arguing hot and heavy that I thought it was the right decision for her to have radiation. I wasn't just trying to pacify you by saying that ...I really meant it. 

Shirlann

Okay, sisters, I got 9 answers on the mets board.  All but one of the women had rads.  Just ONE had a recurrence, and is treating it as MarieKelly said, cutting it out. The rest just got mets, one from a tiny cancer. The rest all over the map in size.  Did not get into staging, etc.  Felt I was intruding as it was.  So does anybody have a study that says that chemo is the only treatment that could affect mets?  Rads has no affect on mets?

I just wish we had a study or something that states that rads have no affect on mets.  Maybe there is?

Anyway, still checking.  Hugs, Shirl 

Anonymous

and most importantly, a husband is who is not at all comfortable with making independent medical treatment decisions in going against the standards of care

I can assure you that I am as cynical as a person can be.  In my profession I have learned that there are quite a number of physicians who have not an ounce of integrity.  After the experience we had with our local medical yokels, I told my W that we were going to our States National Cancer Center (Moffitt) for second opinions and treatment.  And I am glad we did as I will explain below. 

But I am very rational and logical.  I reject most of the alternative medicine sites as nothing but quackery.  I have to assume that most medical studies are completed as well as possible, although I am well aware given the lack of integrity of some doctors/scientists, that studies can be influenced by conflicts of interest and the hope for personal gain.    

 So its not a question of making independent medical decisions, its a question of recognizing my lack of expertise and information.  I have no reason to believe that the medical studies showing the necessity for radiation after lumpectomy were not rational and reasonable, so why would I go against the advice of the best medical minds in the country, whose opinions are based on those very studies?  Who the hell am I do conclude I know better.  There are really far too many unknowns and variables to have actually quantified my wife's risks if she elected to go without radiation, and so we had to go with the best advice available to us at the time. 

The same with the decision to forgo chemotherapy  .  I have got to assume that the oncogene-dx test is valid or that the medical community would not rely on it so much, nor would insurance companies pay for it.  But for that test, my wife undoubtedly would have gone for chemotherapy because there would have been no way to determine otherwise her risk of recurrence without chemotherapy.

My wife was diagnosed with IBC at the end of March.  She found the lump herself after six years of Mammos showed nothing.  The surgeon gave her a call and spent two minutes on the phone with her telling her she had invasive breast cancer but that he could probably save her breast.  She called me crying, I called the surgeon and he didn't bother calling back.  We had to wait three weeks to see him for the post excisional biopsy consultation and then waited in the cold examination room for forty five minutes until this Prima-dona showed up.  He then briefly explained to my wife what breast cancer was, bla bla bla. and that he had to go back in to clean up the margins and do a Sentinel Node Biopsy. 

 I had already become a lay expert in the last few weeks by reading the web and asked him about an MRI.  He said no, that the chances were slim that she had other cancer in her breast or the other breast and that MRI's gave too many false positives. 

 I suggested genetic testing because of my wife's age and family background.  He said no, not necessary and the insurance company probably wouldn't pay for it anyway - - note that not one person from his office took any kind  of detailed history to see if genetic testing was warranted, nor did he know what I knew about my own insurance, which was that it would pay for the test under given circumstances. 

He did suggest a Pet Scan and Bone Scan however, even though the literature said those tests are not warranted in early breast cancer absent symptoms.

He said he was going to schedule her for surgery to get out the rest of the cancer in the next few weeks and in the meanwhile would refer us to an Oncologist and Radiologist.  We responded that we had an appointment with Moffitt in two days for a second opinion.  He said that was fine, but that everybody followed the same Standard of Care and that there would likely be no difference in treatment. Of course, I had already read studies showing that Surgical Oncologists who specialized in Breast Cancer from major Cancer Centers had significantly better survival outcomes than general surgeons, and his refusal to order an MRI made me suspect his competence and knowledge.

So we went to Moffitt.  First thing our new Surgeon did was to recommend my W get an MRI before she left that day.  He made it clear that he wanted all future scans, etc. done at Moffitt, implying that they received really bad results from the medical community at large and they were comfortable only keeping things in house.  Then he set us up for Genetic Counseling, and my wife ended up having the test, which was paid for by insurance, and luckily she was negative.  So  she opted for Lumpectomy instead of Mastectomy.

The Blue dye and radioactive nuclear medicine used for the Sentinel Node Biopsy showed my wife had an unusual condition in which some  of her lymph fluid flowed first through the internal mammary Node?  But during surgery it did not light up with the Geiger counter and so our BS felt confident there was no spread of the cancer through that lymph Node.  Our local surgeon was going to use only BLUE DYE, and as a non breast specialist, who knows if he would have recognized or even known what to do with that internal mammary node.

Anyway, I don't have a very high opinion of the medical community at large.  But the studies and the top minds are the best thing  we have going for now.  To  reject their advice and standards because we think we know better is ludicrous in my opinion.  Now if you felt that you could accurately determine your risk of recurrence without radiation and could accept that risk, more power to you.  I still do not know for sure how much risk of recurrence my W would have had without radiation, only that it was much less, relatively, with radiation.  And I will be damned if I would want my wife to have another local recurrence, which common sense tells me always has the risk of metastasis before it is detected and removed, which apparently is what happens 25% of the time.

  

TenderIsOurMight

There's a large number of great posts here. Lots of detailed thinking on everyone's part and great sharing of opinion. Here's a couple of comments on radiation as I see it:

 

a. The current standard medical advice in the US is that in the majority of cases, radiation is necessary after lumpectomy to maintain survival rates equal to that obtained by mastectomy. So, it's the small minority of cases which are felt to fall into a category where it may be safe to omit radiation. This is based on landmark studies as reported by B. Fisher and all, and no landmark new study has shown differently or been adopted that I am aware of.

 

b. Radiation unequivocally has been shown to reduce local recurrence (about 2/3 reduction).

 

c. Radiation may well reduce distant metastasis; there is a trend toward survival in those having radiation than those not undergoing radiation. I have read this trend to be as much as a 5 to 6% absolute benefit, which as we know is felt by most patients to be an acceptable treatment percentage.

 

The mechanism of reduction of distant metastasis by radiation may be two fold. The most commonly cited mechanism is sterilizing a field of cancer, so no cancer cells persist which may invade blood or lymphatic channels and subsequently grow from their journey's end as a distant metastasis. This theory I have seen repetitively mentioned by the great minds in the field of radiation oncology (Abram Recht, Lori Pierce, Lawrence Marks and others).

 

A less favored theory surrounds cell signaling. Even with early cancers, cells may circulate through the blood and if not destroyed by our immune cells, come to rest distally. But what makes these cells remain active vs inactive is not known. Likewise, dormant breast cancer stem cells may arise or circulate and rest distally. One researcher has demonstrated years worth of dormant cancer cell inactivity.

 

What makes these cells become active is not known. Cytokines are small proteins released by

cells, including cancer cells, that effect the interaction, communication and behavior between cells. In cancer cells, they might be thought of a chemical messenger (similar to a hormone, but not called a hormone) between one or a group of cancer cells and another. My point here is that radiation, by destroying more or all of the local breast cancer cells, may through subsequently limited or no cytokine release, cause continued dormancy of distant breast cancer cells and hence no distant metastasis. 

 

Clearly much more needs to be learned on the details of why radiation helps in breast cancer, and how it interplays with our own immune cells and proteins.

 

Good luck to all in a very personal decision. 

Tender 

Dejaboo

Thanks Tender

'c. Radiation may well reduce distant metastasis; there is a trend toward survival in those having radiation than those not undergoing radiation. I have read this trend to be as much as a 5 to 6% absolute benefit, which as we know is felt by most patients to be an acceptable treatment percentage.'

So would a Mastectomy gain the same Benefit in distant Metastasis? (vs Lump/Rads)

Pam

TenderIsOurMight

Please note the indications for post mastectomy radiation therapy (PMRT) as given in NCCN breast cancer treatment guidelines. Of late, in the 1 to 3 node positive patient PMRT should be considered as an option has been added (paraphrasing). So, Dejaboo, the absolute benefit in PRMT depends partially on the amount of disease present. I wish to be careful here, as clearly PMRT is not indicated for all patients. However the indications for some patients seems to be widening.

 

Here is what Cristofanilli and colleagues at The University of Texas M. D. Anderson Cancer Center, Houston, TX wrote this month in an commentary on PMRT as noted in the Journal of Clinical Oncology. To see the entire article please go  to http://jco.ascopubs.org/cgi/content/full/26/24/4044

 

"The current threshold for the use of PMRT is steadily decreasing as the data for survival benefit in carefully selected patients are steadily increasing." 

 

"Specifically, changes in radiation technique over time impacted long-term outcome improving the balance among a decreased rate of breast cancer deaths, a decreased rate of cardiovascular events, and number of radiation-related lung sequelae.⁵ The recent analysis of the Danish PMRT trials demonstrated a survival benefit even patients with one to three positive nodes.⁶ There is also coalescing of data revealing at least a 66% relative reduction of locoregional recurrence risk with the utilization of PMRT. Data also conclude that for every 4% to 5% absolute locoregional recurrence risk reduction, an ensuing 1% survival benefit is obtainable. Another recent study using Surveillance, Epidemiology, and End Results data of the late 1970s and all of the 1980s documented a continual decrease in cardiovascular events. Lastly, two recent studies in patients predominantly treated in 1980s and 1990s estimated a decreasing risk of lung cancer after PMRT. Data suggest that the incidence of PMRT toxicities will continue to decrease as modern radiotherapy techniques are developed. "

 

And here is what Lawrence Marks and colleagues wrote about PMRT in May, 2008, JCO. 

Link:http://jco.ascopubs.org/cgi/content/full/26/13/2075 

 

One to Three Versus Four or More Positive Nodes and Postmastectomy Radiotherapy: Time to End the DebateLawrence B. Marks, Jing Zeng, Leonard R. ProsnitzDepartment of Radiation Oncology, Duke University Medical Center, Durham, NCThe role of postmastectomy radiotherapy (PMRT) has been controversial for decades, accounting for countless presentations, debates, and papers. It was reasonably clear from the beginning that PMRT improved locoregional control. Much of the controversy has had to do with whether PMRT improved survival. The evidence is now strong that PMRT does indeed improve survival, both from individual studies^1-3 and from reviews and meta-analyses.^4-8The Gebski et al⁴ analysis is particularly significant because, unlike many meta-analyses, this study controlled for the quality of the radiotherapy. The more recent studies demonstrate an absolute survival benefit of approximately 5% to 10% and approximately 66% to 75% relative reduction in locoregional recurrence. There should no longer be much doubt in the minds of oncologists as to the value of PMRT.Controversy continues to exist, however, as to the clinical characteristics of patients who would benefit significantly from PRMT. Because the risk of locoregional recurrence increases with the number of positive axillary lymph nodes, a widely adopted approach has been to apply PMRT only in patients with four or more positive axillary nodes, and not to those with one to three positive nodes. The rationale for this approach is nicely summarized in a prior Journal of Clinical Oncology editorial.⁹ If one believes that the ratio between locoregional failures avoided and breast cancer deaths prevented is approximately four to one, the group with four or more positive node group will enjoy the largest benefits in both locoregional control and survival.We have a number of concerns with this thesis, however. First, though this approach seems logical, it is not supported by the available data. In the Overgaard and Ragaz studies (Table 1), the absolute magnitude of the overall survival benefit afforded by PMRT is similar in the patients with one to three versus four or more positive lymph nodes.^1-3 Many have criticized these studies for the degree of axillary surgery (median number of recovered nodes, seven in Overgaard and 11 in Ragaz), compared with a larger number of recovered nodes in some other studies. To address this criticism, a recent analysis from the Danish trials¹⁰ considered the subset of 1,152 node-positive patients with eight or more nodes removed (ie, > median). The overall 15-year survival rate was increased by 9% in patients with either one to three positive nodes or four or more positive nodes, with a disconnect between improvement in local control and survival. Although the patients with four or more positive nodes had a far greater improvement in local control with RT than did the group with one to three nodes, the survival benefits were similar in both groups.View this table:
[in this window]
[in a new window]

 Table 1. Effect of Nodal Status on the Impact of PMRT on Overall Survival 
The explanation advanced by the authors seems plausible. Improvements in locoregional control will yield survival benefits only if there is systemic tumor control as well. Because patients with four or more positive axillary nodes are likely, on average, to harbor a higher systemic subclinical disease burden than those with one to three positive nodes, improvements in locoregional control will be less likely to translate into a survival benefit in the four or more node group. Thus, the ratio between locoregional failures avoided and breast cancer deaths prevented may not be constant across patient subgroups. Further, as the efficacy of systemic therapy increases, the impact of PMRT on survival may also increase. In this regard, local and systemic therapies are synergistic rather than competitive.¹¹Second, some argue that a more complete axillary dissection would have moved most of the patients with one to three positive nodes in the Overgaard and Ragaz studies into the group with four or more positive nodes. This issue has been studied by several investigators. Danforth et al¹² and Saha et al¹³ found that 64% to 71% of patients with one to three positive nodes after limited level I dissection (median, 10 nodes) would remain in the group with one to three positive nodes with a more complete dissection. Using mathematical models based on clinical data, Kiricute et al¹⁴ and Iyer et al¹⁵ computed that approximately 50% of patients with two positive nodes after limited dissection will remain in the group with one to three positive nodes with a more complete dissection. Thus, approximately 50% to 70% of the patients in the group with one to three positive nodes from the original Overgaard and Ragaz studies would likely remain in the same group with a more complete dissection. Thus, the often-heard suggestion that most of the patients with one to three nodes in the Overgaard and Ragaz studies would have had four or more nodes with a more complete dissection is not consistent with the data.Third, the subsetting of patients into groups with one to three versus four or more positive nodes is an artificial distinction originating in the early days of adjuvant systemic therapy forbreast cancer. The National Surgical Adjuvant Breast and Bowel Project (NSABP) was perhaps the first to do this, with initial benefits from adjuvant chemotherapy observed only in those with four or more positive lymph nodes.¹⁶ Later studies demonstrated the utility of systemic therapy in patients with one to three, or even zero, involved nodes.^17-23The artificial distinction of one to three nodes versus four or more was adopted by radiation oncologists as well. We, unfortunately, have been less vigilant in removing this from our lexicon. The published data clearly demonstrate that there is no magical change occurring at the 3 to 4 nodal boundary level. Locoregional relapse risk increases approximately linearly with the number of positive axillary nodes.^1,24-27In light of the above, consider the manuscript by Katz et al²⁸ in this issue of JCO. They present a nomogram that can be applied to patients with positive sentinel nodes to predict their riskof harboring four or more involved nodes. A sophisticated statistical analysis has been conducted on 402 patients with one to three involved sentinel nodes who subsequently underwent completion axillary dissection. The study implies, of course, that less treatment, particularly radiotherapy—and perhaps chemotherapy as well—may be appropriate for those with fewer than four involved nodes. Those who subscribe to this point of view may indeed find this nomogram helpful.We do not find it helpful, because it perpetuates this arbitrary one to three versus four or more distinction. We believe that comprehensive PMRT is appropriate for the great majority ofnode-positive patients undergoing mastectomy. Some selection based on other clinical and biologic factors may be important and appropriate. For example, Cheng et al²⁹ developed a modelto predict locoregional recurrence and the impact of PMRT on survival. In addition to axillary nodal status, estrogen-receptor status, lymphovascular space invasion, and age at diagnosiswere all found to be significant. Similarly, Truong et al³⁰ suggested that young age, medial tumor location, ER-negative status and greater than 25% of nodes positive were also predictorsfor a higher risk of locoregional recurrence. It is likely that other more sophisticated biologic factors, such as gene expression profiling, will also be helpful in this regard.We would like to express some concerns about an apparent double standard in the treatment of breast cancer patients with small numbers of positive lymph nodes. Typically, such individuals receive aggressive chemotherapy programs, perhaps based on limited data with relatively short follow-up. For example, consider the introduction of paclitaxel into widespread clinical use after the initial Cancer and Leukemia Group B report.^31,32 Such aggressiveness with systemic therapy suggests that a consistent approach be followed with reasonably aggressive radiotherapy as well. Additionally, the use of PMRT is supported by large trials with long follow-up. Ongoing European trials such as the Selective Use of Postoperative Radiotherapy After Mastectomy trial as well as biologic predictors may resolve some of the issues raised here. Until further data are available, however, we believe the great majority of patients with any involved axillary lymph nodes should be strongly considered for PMRT.Lastly, concerns regarding the toxicity of PMRT, we believe, have been overstated by Katz et al.²⁸ With modern treatment planning techniques, it is generally quite feasible to avoid the heart, and minimize lung exposure.^33-37 Arm edema is a relatively uncommon event when the RT fields are designed to limit exposure of the dissected axillary tissues. Obviously, there are always some risks associated with any treatment, and one needs to carefully consider the overall clinical situation and comorbidities to assure a favorable therapeutic ratio. Further, since the survival benefits in postmenopausal women appear to accrue 5 or more years after PMRT, the patient's life expectancy must be considered as well.

It is time that we dispense with the artificial partitioning of patients into groups with one to three versus four or more positive nodes.³⁸ Additional study of the biologic and genetic factors that lead to locoregional and systemic recurrence will assist to further define which patients are most likely to benefit from PMRT.³⁹ 

 

Sorry about the light color of my posts. I just can't figure out why this is happening.

 

Tender 

Anonymous

Thank you for your research Tender.  I never considered before the possibility of preventing or delaying mestatasis simply by mopping up the local cells, but it makes perfect sense.  I suppose in the end there is no way for sure to know whether a distant metastasis could have been prevented with radiation even if there was no local recurrence, but given there is that possibility, Radiation makes even more sense to me now than it did before.  I think you established what Shirlann was hypothesizing earlier in the thread.