Radiation necessary in an early stage cancer

MarieKelly, thank you for putting together all of the info with the studies - I have printed it out and read it all.  I think I understand the gist of all this.  In most cases (with certain postive prognostic features) there will not be a recurrenece therefore in these cases radiation isn't needed.  But I guess the big unanswered question is which specific cases do need radiation?   As far as I could see, in every study cited, those with rads had a reduction in the recurrence of bc (but not necessarily in survival) which makes me question if it is already determined before treatment even begins who it going to live and who is going to die from this disease and if so what difference does treatment make?  Study after study shows that there is no difference in survival rate between someone who has a lumpectomy & rads and someone who has a mastectomy, BUT there is a difference in the recurrence rate.  Generally speaking, most women who die from bc are at stage 4  (I'm thinking out loud here as I write . . .)  Therefore it seems the survival rate wouldn't have anything to do with the recurrence rate because if it did, there would be more deaths in the group with a higher recurrence rate (lump/rads).  I can't quite figure the logic of this one out but it sounds to me like things are already determined when those cells first start becoming abnormal. 

The one study cited "10-Year results after sector resection with or without postoperative radiotherapy for stage I breast cancer: a randomized trial." showed what seemed to me to be an alarming difference in the recurrence rate 8.5% vs 24%.  I have never seen such a difference. But the overall survival was almost identical 77.5 vs 78. 

It seems to me that doctors have a moral responsibility to give their patients radiation if there is a chance it will help them.  I can see their point because there is a definite correlation between radiation and a lower recurrence rate.  They also have a moral responsibility to go over the cons with their patients.

This whole issue still boggles my mind 5 years after diagnosis and I still wonder if I made the right decision.

My dear old oak tree, I just don't know what to do at this point, I keep thinking about the stats I've seen. It just doesn't seem like the rads are the best choice for me - maybe I'm wrong  - I don't know at this point. What is the quality of life? Quantity is a moot point for me.

A trooper? Thanks, but I feel more like the Energizer Bunny.

OldOakTree,

Had wanted to say above, but forgot -

In my opinion, you can stop worrying about whether or not you made the right choice about radiation. You made the right choice.  After 5 years, the probability of the cancer you once had still being there is not very likely (not impossible, just unlikely). Sure you might get another cancer, but we all always face that possibility no matter what treatment we had or didn't have.  With a small DCIS grade 1, clear margins and no evidence of it elsewhere in the breast, that little beasty is gone, gone GONE! 

Congratulations on 5 years!!!! I'm very much looking forward to hitting that bullseye myself (8 more months to go!!).

Thanks Marie Kelly. You certainly made me feel better as well. I'm only a year out and therefore worry alot. My dx was favorable, but I'm still at the point where I'm "waiting for the other shoe to drop". How does one person get  a tiny amount of DCIS like me, and others have it all over the place? I have always wondered about that. Esp. when the year earlier, there was nothing there. Do some of us just catch it early, or it just grew slowly? Oh well, as you can see, I'm still at the point that I'm obsessed with this. I was getting better until this last mammo showed more new calcs. Thank God they were benign. Thanks for all of your great info. Nada

Hi Nats, my condition is similar to yours. I am done with my chemo, 4 AC and 4 taxol,on May 29. Met with rad onc on June 11th who did not recommend rad for me (I was bit surprised, my impression was that they are all out there to make money). As normal for me, I am confused and thinking of second opinion. Can you please tell me if you went for rad or not?. This may help me make a decision. Thanks a lot and good luck.

Pam, that is the most ADORABLE dog! 

Hugs, Shirlann 

Karen, I am so happy you posted. I'll be having a "fractionalization" course of treatment from a prone position as well (I used to smoke and I also have a minor mitral valve problem).  I'm glad you had a good experience.

I have to disagree with mdb and MarieKelly on the use of radiation in eary stage cancers.  I had a left mastectomy and a course of radiation due to my being stage III.  I  am also a radiation therapist and medical dosimetrist.  mdb, your statement about the breast cancer death stats involving women who never get mammos is very inaccurate and deceiving.  All you have to do is read on this discussion board about women who had mammos faithfully for years, only to go on to develop breast cancer.  You will also find women on this board that had dcis or early stage disease who rapidly progressed to stage IV in spite of treatment.  This disease has no rhyme or reason and statistics are not foolproof.  Even with modern detecting equipment such as digitial mammography does not guarantee a cancer will not go undetected. Odds may be in favor of someone with early disease that it may not recur, but again it is not a given.  No one including doctors knows who will have recurrence and who will not.  If it were that simple, breast cancer would easily become predictable and could be managed better.  Some day we will get there, but until then doctors are trying to provide the best options for treatment.  I completely understand the fear of radiation.  It sounds rather medival. But like all medical procedures, the worst case scenarios and possible side effects  have to be disclosed regardless of how unlikely or rare these side effects have occurred.  In the 12 years that I have been a radiation therapist, I have seen only 2 cases of possible radiation induced rib fractures.  That has been the most severe side effect.  The most important concept in designing and delivering radation for treatment is doing minimal harm to normal organs and tissues.  That is the most important limiting factor in delivering a treatment dose, NOT the cancer.  I personally want to never look back and think that I did not do everything possible to prevent this disease from recurring.  This included weighing risks of treatment.  All the studies in the world mean nothing if you turn out to be the one with a reoccurance.  Every woman needs to be informed of all their treatment options and make their own decisions.  There are no right or wrong choices. Just choices that make sense to you.  I'm all for everyone sharing their experiences, thoughts and opinions, but not at the cost of scaring others and inducing doubt in their treatment decisions.

Thanks Shirlann,

That is Deja (boo)

Pam

<<<Pam, that is the most ADORABLE dog! 

Hugs, Shirlann >>>

Rockthebald, I would be happy to offer my observations and my personal as well as professional help of my experiences.  I was diagnosed in 2005 and had 30 fxs of radiation in December of that year.  I'm have very fair skin and I did experience the "sunburn" side effect towards the end of tx.   It wasn't too bad and I managed it with aloe vera gel.  After tx I underwent reconstruction and very happy with the results.  My radiated skin looks very normal and I had no complications during the reconstruction due to the radiation.  I have not experienced any lasting side effects but I'm not unrealistic to think that there may not be any long time effects that I may experience in the future.  But I really believe that without this treatment I may not have had a future.  Prettyinpink100 I loved your post and it sums up exactly what I believe especially when I was faced with my treatment options.  This is the reason it is referred to as aggressive treatment and I for one was willing to be as aggresive as possible and was thankful for what is now available for treatment. 

Zeamer3 wrote: This disease has no rhyme or reason and statistics are not foolproof. 

Aren't these same "statistics" that which your radiation industry uses to justify itself?? The adoption into general practice of the standard of care, that lumpectomy = radiation was made based on statistics derived from research. Was it not??  So why is it OK to rely on "statistics" only  when it suits the purposes of the industry?? 

And I highly disagree with your comment that "this disease has no rhyme or reason".  Much to the contrary, those subsets of patients most likely to remain recurrence free without radiation after lumpectomy can be identified.  "Most likely", of course, means no 100% guarantees in accuracy...but then again, there are also no guarantees that those who allow themselves to be subjected to radiation will be remain recurrence free either. So if there's no absolutes either way, shouldn't patients be offered the information they need to assess their individual risk rather than simply telling them that lumpectomy = radiation and therefore that's what they're going to have to do??  Just telling a patient that radiation after lumpectomy will reduce the risk by 10%, 30%, 50% tells them literally nothing meaningful unless they first understand what their own individual recurrence risk is. Those with a very low risk of recurrence benefit very little, if any,  

I can't speak for  mbd, but I personally am not opposed to all radiation after lumpectomy. What I'm opposed to is the standard calling for everyone to automatically recieve radiation after lumpectomy irregardless of the sometimes extreme differences in their individual pathology, prognostic factors, and pre-existing health problems. Not all (and probably not most) radiation oncologists are bothering to take any of it into consideration which, when completely ignored as it often seems to be, changes the patients risk vs benefit ratio considerably. I firmly believe patients have a right to know, and understand as best as they are capable of understanding, that the standard was developed to treat a population of patients as a group and may not necessarily apply to them individually.  They need to be told, not only what the standard of care is, but also  that in those cases with baseline low risk, this standard could possibly be more harmful to them than beneficial.  They need to understand that, just like any other medical treatment, they have to right to decline if, after being accurately educated on the matter, they decide that their risks might outweigh the benefits.

Zeamer3 wrote: But like all medical procedures, the worst case scenarios and possible side effects  have to be disclosed regardless of how unlikely or rare these side effects have occurred.  In the 12 years that I have been a radiation therapist, I have seen only 2 cases of possible radiation induced rib fractures.  That has been the most severe side effect. 

Well, I certainly agree with you about side effect disclosure. But how often are patients realistically being advised to the extent that they truly grasp the potential consequences...and how often are they told very little at all?? We've all read postings on here of those stating that they were told very little and were surprised to hear of some of the potential consequences. 

And regarding the comment about 2 cases of rib fractures in 12 years of practice being the most severe side effects you've seen. All I can say about that is your rad onc center must be doing an excellent job of getting it right and I applaud you for that. But are they all that great at what they do. I suspect not. How many complications get blown off as something else??  And just 12 years is really not quite enough time to see the radiation induced cancers, is it? Don't they usually take at the very least about 10 years and escalate from there as time goes on?? I'm pretty sure I read the mantle radiation for hodgkin's lymphoma needs at least 10 years to produce a breast cancer. And how would you even know if secondary cancers developed in some of your former patients that far out?? How would you know whether or not CAD or heart attack suffered by one of your patients 10-15 years later wasn't caused from the radiation they recieved. Do you follow them all through the decades after radiation??

Zeamer3 wrote: The most important concept in designing and delivering radation for treatment is doing minimal harm to normal organs and tissues. 

Since that's the goal, then developing a plan of not delivering radiation to normal organs and tissues in patients with pathology that is the least likely to pose a threat of recurrence and is therefore the least likely to gain any benefit from it should also be high on the priority list. So why isn't it??

Yes, there's the separate (but related) issue of informed consent. I agree, Marie, too many medical professionals are taking shortcuts there and not just where radiation is concerned but also surgery, chemo, etc.   Reading off a procedure and mentioning a couple possible side effects and then handing me a brochure and a form to sign doesn't cut it. You need to make sure I understand what I'm being told. Even if it takes more than ten minutes.  Even if it means volunteering information that I didn't realize I should be asking for.

The best I was ever treated in this regard came from MSKCC's gene counseling program. They spent HOURS with me making sure I understood things, the implications should I choose to be tested, the implications should I be found to have a mutation, not just for me, but for my family.  Then they sent me a multi-page, single-spaced letter summarizing everything we discussed. Then they spent hours with me again when I was found to have a mutation (2 weeks ago), discussing my course of treatment, asking me why I was not electing for masectomies and respecting my answer, discussing ways I might relay the info to my family members (including not only my siblings, nieces and nephews, but also my 30+ aunts, uncles, cousins), and asking me questions and encouraging me to ask questions as way of (in retrospect) making sure I understood what I was being told.

Informed consent is not just a pro forma ethical requirement. It can make a world of difference in how one makes decisions and feels about those decisions once they are made.  
By the time I walked out of there knowing I was BRCA2 positive, I felt like I could have been told I was pregnant with twin rhinoceruses (rhinoceri?) and I would have been okay.

My point is (and I do have one): We are standing on the shoulders of what we learned from women who had breast cancer 10 and 20 years ago.  The reality is that we do not have complete information to make the decisions we are being asked to make w/ 100% (or even 60 %!) confidence because for the most part that info does not exist yet.  To the extent it does exist, it should be shared with us.  And to the extent that it does not exist, doctors and researchers should admit this, and pursue new and creative lines of inquiry (e.g., "So what does happen to women who were/were not radiated 10 years ago...")

"Most aggressive" treatment - that's a loaded term.  Many of us feel that opting for the most aggressive treatment available is the best way to go. 

But a history of breast cancer is enlightening.  Some of the treatments that were considered "most aggressive" years ago and were highly touted by leading doctors and hospitals are considerd malpractice today.  I'm talking about things like the Halstead procedure (removal of the chest wall and Level I/II nodes) and even the superradical mastectomy, which went beyond the Halstead and actually split the patient's sternum to scoop out the supraclavicular and intramammary nodes!  This operation was pioneered by Owen Wagensteen at the U. of Minnesota, who only performed it after biopsing the regional lymph nodes to make sure cancer hadn't spread there.

So node-negative women 50 years ago who opted for the most aggressive treatment possible would have traveled to Minnesota to have their entire chest walls and all 4 levels of nodes removed in operations performed by Dr. Wagensteen.  Of course his surgical mortality rate was in excess of 1 in 7, but those who survived did not have a locoregional recurrence in their chest walls or lymph nodes, so by all standards his recurrence rates were low.  Back then, if you'd made your decision based mainly on recurrence stats, you'd have found yourself in Minnesota with most of the front of your upper body removed.  Now these same women are treated by lumpectomy.  Any surgeon who did a Wagensteen procedure today on a node-negative woman wouldn't have a medical license for more than 5 minutes after the surgery was done.  What is considered "most aggressive" by today's medical professionals does not always in the long run turn out to be the best for patients. 

I believe that treatment decisions are deeply personal.  What is right for me might be wrong for you, even if we present the exact same clinical case.  We all need to consult our doctors and loved ones, read up on the subject, and at the end, make the best judgement we can based on the facts and our gut feeling.  But as part of that research, I think we need to take pronouncements from the medical field about the latest and best with a grain of salt or two.  

I would highly recommend the book Bathsheba's Breast by James Olson to anyone who is interested in how breast cancer has been regarded and treated over the last few thousand years. I found it to be an absolutely fascinating well-researched look at our disease and its long history in the human race.  It was eye-opening to see how in each generation of healers there are always a few who believe that they've found the one way that's going to treat this disease.  Some turn out to be right and are true leaders, like those who bravely pioneered the two-step process in which biopsy and mastectomy were broken into two separate surgeries.  Others, like Dr. Wagensteen, inflicted horrible harm on women in the name of aggressive treatment.

Reading this book gave me the ability to step back and put the "latest and greatest" pronouncements of this generation of healers in a bit more perspective. 

I guess the study that I look at the most about this whole subject is one that Susan Love cites in her BC book - the study where they were looking at cutting back on treatment for people with Grade 1 tumors (there aren't a lot of studies on us, so I'm always on the lookout). Basically, the experimental desigh was that half of the women studied (and I believe they were all grade 1 with clear nodes) got rads and half didn't. The experiment was halted about 2 yrs in because there was such a high rate of recurrance among the women who didn't get radiation that to continue the study would be unethical.

So, that solvresolved the issue of whether or not I should have rads for me. I do think, though, that women with small, well-defined tumors should be offered partial breast irradiation. I did talk to my rad onc about this, and he said that partial breast is more work for the doctors and staff, so it hasn't taken off as much as he would have expected. [I did have it, but I had to ask and push.]

Not knowing your background or circumstances, MarieKelly, I don't want to engage in a debate with you on the need for radiation.  I do take exception to your summations of my opinions and views on the subject.  Radiation is not an "industry".  It is a treatment option that is instrumental in providing care to cancer patients.  It is not based on statistics.  It is based on the experiences of previous cancer patients that were willing to undergo sometimes experimental treatments and face the unknown in order to help find better treatment options for all.   You do them and the rest of us a disservice by insinuating the knowledge gained was for not. 

 Research and statistics are a guideline to help doctors and patients make the best decisions for their individual case.  I agree that not all doctors do enough to give patients enough information on their specific circumstances and risk factors if they do radiation or not.  The truth is, there is NO POSSIBLE way to know who will have a recurrence or not.  Statistics can only give you a probability.  In reality we all have a 50/50 chance of recurrence.  You will or you won't.  More definitely needs to be done to better inform patients of their situation and no patient should accept a "you have to do this" answer from any doctor.  

This disease strikes the old and the young.  It strikes those you that have followed a healthly lifestyle their entire lives as well as those that are overweight. Patients initially diagnosed with stage I disease, develop metastatis.  Where is the reason in that?  I have personally treated patients initially diagnosed with DCIS, declining radiation, only to have a recurrence.  Yet there are cases of women surviving 25 or more years with a later stage disease.

 My experience in following patients after treatment is not just limited to the 12 years I have been in the field.  The Rad Oncs I work with have been following a number of patients over 15 years.  I'm not saying that there are not more serious side effects that occur.  But if you are waiting to see something occur 10 to 15 years later, you can never be sure of the cause.  Radiation damage is not unique to be able to tell it from anything else.  And in my opinion, when I was weighing potential side effects against the possibility of saving my life or even  preventing a recurrence, I wanted to be here 10, 15, 25 or more years from now.  

 I can't emphasize enough how personal a decision this is regardless of your stage.  Hindsight is 20/20 and everyone needs to be comfortable that they made the decision that was right for them.

 Medical science will forever be an evolving science and treatments will hopefully continue to be fine tuned and perfected.  The knowledge that is gained by those who were willing to be invovled in clinical trials and protocols is inmeasurable.