Radiation necessary in an early stage cancer

Anonymous · July 2008

I value all the 'Quacks' on this thread & their Opinions. (While I may not agree with everything they say)

And can you explain to me how the opinion of a non-trained. non-educated, non-medical person can have any value on a board like this? Anybody who can relate their personal experiences has something worthwhile to say. But to attack the standard of care as being derived not for benefit of patients but for greed? Sorry, I have no tolerance for this type of thinking. Granted lots of doctors are incompetent and everybody should be proactive and do their own research and make their own best decisions. But should they really consider the nonsensical opinion of a quack who who has an axe to grind? I think not.

OneBadBoob · July 2008

worried hubby, you write:

And can you explain to me how the opinion of a non-trained, non-educated, non-medical person can have any value on a board like this?

I see that you are quite new to this board. and I see that you have not posted on all that many threads.

As you step back and get to know more of the members of the group, you will see that we not only consist of "non-trained, non-eduated non-medical person(s))" but also have many members who actually are highly trained in various medical fields, physicians, nurse practitioners, physical therapists, physician's assistants, medical researchers, geneticists (sp?) etc., and you will see that everyone is careful never to give medical advice, but to very often recommend that people get second and third opinions to help them make their treatment decisions.

I am another who highly values the indepth information from the wonderful women on this board, even when I do not agree.

I am sure as you get to know more about the members of this board, you will see what we are talking about as far as "valuing" their opinions.

Edited to add that I am going off for my three times a week thereapy for my LE, which diagnosis was missed by my two highly trained, board certificed surgeons, which has now turned into Stage 2 (irreversible). It was through the advice of one of these non-trained, non-educated, non-medical persons on this board that I was steered into the right direction to get the correct diagnosis and treatment. Wish my highly educated, board certified surgeons would have caught it at Stage 1 (reversible).

Yes, these folks do much good on this board, believe me.

zeamer3 · July 2008

Wow, I feel like I've got whiplash reading the last couple of pages on this thread. The thread is titled "Radiation necessary in an early stage cancer." I feel it has now deteriorated into name calling with little to no value for others trying to garner useful information.

Worriedhubby, I would suggest you read this thread from the beginning. Being someone with the unique circumstance of a BC survivor and Radiation Therapist/Dosimetrist you will see a healthy debate and discussion on this topic of which I have contributed. You will see that I too for the most part agree that there are just too many studies done in and out of the US by researchers that are not involved with the politics of medicine to support the need of radiation. I also agree that in early stage disease the likelihood of recurrence without further treatment after a lumpectomy is low. But one person's definition of "low" is not the same as another's. What might be an acceptable statistic to one, concerns another.

I too expressed in a post my concern that some are expressing their opinions in a unhealthy manner and it felt as though they were chastising those you made a different decision. But I still value their opinions. MarieKelly has stated that she has other health concerns involving her heart that made the possiblity of radiation heart damage however remote, a concern for her. She weighed this info against the possible benefits and made the decision that was right for her and I applaud that. This is what I would want for all women to be able to do.

My main concern is for those women who after reading this thread are basing their decision based on the opinions presented here. All any of us can do is to do research based on established and reported clinical trials and studies that are not biased towards one form of treatment over another. They are just reporting the facts. And there are hundreds of those available via the internet. This is where the "standard of care" is derived from, NOT monetary driven.

The fact is that every form of treatment has potential benefits vs side effects. I do feel the fear that most of us experience concerning radiation is unwarranted. All forms of radiation are not equal and those used for treatment purposes are very controlled and can be manipulated for benefit. Not like what was the rage in the 50s and 60s in sci fi movies. I think alot of our fears stem from a media perception. Radiation for cancer treatment has been around since the 60s and there are numerous studies on long term side effects. I have not seen one where there was an alarming concern for our safety. In fact, I posted a study that showed statistically how low the occurence of possible side effects are. The side effect occurence rates were lower than the statistics posted concerning the likelihood of recurrence with lumpectomy alone.

We need to remember that this discussion was concerning very early stage cancer. Typically this would mean no nodal involvement and a low grade cancer. In my case, after my mastectomy, an area of cancer was discovered that did not appear on my mammo, ultrasound or MRI. Had I not had further treatment after the initial lumpectomy, that cancer would have gone untreated and undetected. Regardless of nodal involvement, there is always the possiblity that some cells escaped the initial area of detection. It comes down to how comfortable someone is with this possibility.

Trust in your healthcare team doesn't mean blind trust. Question everything.

Dejaboo · July 2008

worriedhubby wrote:

I value all the 'Quacks' on this thread & their Opinions. (While I may not agree with everything they say)

And can you explain to me how the opinion of a non-trained. non-educated, non-medical person can have any value on a board like this? Anybody who can relate their personal experiences has something worthwhile to say. But to attack the standard of care as being derived not for benefit of patients but for greed? Sorry, I have no tolerance for this type of thinking. Granted lots of doctors are incompetent and everybody should be proactive and do their own research and make their own best decisions. But should they really consider the nonsensical opinion of a quack who who has an axe to grind? I think not.

I am a Non-trained, 'non-educated', non-medical person & I certainly Value My Own Opinion.

Like many women I knew nothing about breast cancer until I was called back for another Mammo because of Calcifications. It was then I began to read all day, every day about bc Sometimes 8-12 hrs a day. It was scary & depressing but also educational.

I probably have 700 'favorite places' on bc! And thats not an exaggeration.

I found studies, I found Links, I found Forums, I found Pictures. I found well known websites, Alternative treatments, suppliment info...All with Information- some good - some not good.

I have no health background. But I have had my Onco tell me many times 'Wow, very good question Pam. I dont know the answer. So lets look & find out' I have stumped him several times with my Highly educated questions. I have corrected him on a few things he said, such as when he said 'Herceptin Heart Problems are always reversible'- I said 'Usually' He said, 'Right, usually' & smiled.

My 2nd Onco was recommending I take Tamox (when earlier she didnt) She asked if I wanted some Info on it...I looked at her & she said- 'Oh thats right- You have all the info you need on it'...And thats correct. I probably have 20 times the info on Tamox then she would have given me.

I feel every woman with bc needs to read & educate herself about bc. Some learn more then others...Some dont want to know. (and thats fine) I want to know everything I can to be able to make my Informed choices- My Health care workers can not & do not inform me about everything...How can they- they dont have time...I have been reading & learning for hours on end for over 4 months. They see me & spend an hour with me.

I value (and appreciate) it when others share links to studies or info on something I am asking about. Weather its Chemo, Rads Or Suppliments.

I do not think bad of anyone who has early stage cancer & makes different choices then mine. I think it is wonderful that they have made their choice. I do not think they made a wrong or stupid choice either. They made the choice that was right for them based on many factors & that is whats important.

I also think name calling does not have a place in this world.

Pam

Anonymous · July 2008

Onebadboob, when it comes to judgment calls or the competency of any one, single physician I certainly agree that second and third opinions are worthwhile if not mandatory. That's not what I object to. I object to the opinions of people who come to a board like this and attack the STANDARD OF CARE as being derived not for patient benefit but for greed, and that alternative therapies are superior. Those are the charlatans that need to be exposed for what they are. I'm not sure how to make this any more clear.

The Standard of Care right now is that if you have a lumpectomy, you have radiation to reduce the risk of recurrence. The opinions of people who object because they think doctors opine this only for the money are worthless and harmful and damaging. Now if somebody chooses to accept the risks of recurrence rather than the risks of radiation for a low grade cancer, that is their right to do so for themselves. But to do it because they don't trust doctors who are allegedly giving their advice based on a Standard of Care formulated out of greed is ludicrous imho.

And one other thing. We went to a major, comprehensive breast clinic for treatment specifically because I did not trust the local medical yokels in my town. So yea, I have no problem questioning doctors, their credentials or their opinions. And I read up on everything to ensure myself they know what they are talking about.

Zeamer, I don't disagree with anything you say. I simply have less tolerance for some of the opinions offered here than others I suppose. I don't like what I consider Quacks trying to influence others to see things their way. I repeat that these people simply cause too much harm.

Jaydee · July 2008

Hi Zeamer3 - Spotted that you had posted earlier and thought I'd pick your brains if you don't mind. I gave my views in earlier posts as to my reasons for having radiotherapy and agree that we all have to reach our own decisions based on the merits of our own breast cancer and weighing up the advice of our medics with our own research.. My question - I read an article from a few years ago saying that early research had been done into a test for telling which patients with early breast cancers would most likely suffer from long-term side-effects of rads and could put that into consideration when deciding on rads/no rads for early breast cancers. The article also stated that anti-oxidants helped to prevent breast fibrosis developing. Could all that green tea, dark chocolate and tomatoes I have been consuming since diagnosis actually be doing more good than I thought it was! The fruit they talked about was green grapes and they were giving extracts to a control group in the form of tablets and another group were having a placebo. Can you shed any light on this. Many thanks and may you all have a very good weekend, Jaydee

artsee · July 2008

As an outsider looking in, I have to ask if you could PLEASE give it up already.I have never read anything like this in all the threads I have been in. A few of you sound like TWO year olds, and you are getting nowhere with all this arguing. Keep in mind stress causes CANCER, and we are ALL in a fradgile state here......................Is this of any help to anyone anymore? Absolutely not.

Hopefully many of you won't give anyone the satisfaction of retuning here!!!!

mdb · July 2008

To Worried Hubby,

You wrote:

" I object to the opinions of people who come to a board like this and attack the STANDARD OF CARE as being derived not for patient benefit but for greed, and that alternative therapies are superior. Those are the charlatans that need to be exposed for what they are. I'm not sure how to make this any more clear."

That's me, the "charlatans." I guess I need to be "exposed" for not having useless radiation, done on my 2cm IDC.

Worried Hubby ... this is MY LIFE. I don't want, to die. I want to live!!! *I* made this choice, for myself. To NOT do this radiation. Every study I read, including the one I quoted, above, said, "there is no difference in life expectancy, if you do the radiation, or not."

If my cancer comes back, I'll get it cut out, again. What's the point of all of this radiation "Big Business."

To all you women, out there, this was a very difficult decision. I even went to the SIM appt. At that appt, it just dawned on me, I don't want this. I don't need this. And then, I just refused to sign the consent, and walked out. This was after they did the CT and markings and the whole thing.

I DO NOT believe, in this radiation, for early stage breast cancers. I DO believe, it's all about the $money. It's the Medical Industrial Complex.

MORE $$$ is spent, in the USA for health care, and we're like 40th healthiest nation. Because we're spending $$$ on ALL of the wrong things. Like this mostly useless radiation, on cancers that would never return, anyway.

And Worried Hubby, you never answered my query about your (potential) Prostate Cancer. I did read through all of the posts on this board and didn't see a response, from you. Did I miss it? If I did, please post the URL.

My point was, if you had some early stage prostate cancer, would you get it cut out, at the risk of you becoming sexually, impotent?

That IS the "Standard of Care." For Prostate cancer. Cut it out. Even though, the prospects of it killing the man, are low. But the prospects of the surgery making you impotent, are High.

And like someone else, wrote, the "Standard of Care" is constantly changing. Like she said, 30 years ago, the "Standard of Care" was a radical mastectomy. Now, it's way different.

And even this Lumpectomy=Radiation "Standard of Care" was developed WAY before digital mammography. 30 years ago, they would never even have found my 2cm IDC. Much less, any 2MM DCIS. 30 years ago, they found, lumps. Big Lumps. And that is when this "Lumpectomy=Radiation Standard of Care" was developed.

Well, anyway.

For my part, as of today, I'm "cured." I just got BiRad 1, on both breasts, 5/22/2008. Until my next Mammo, 11/08.

All of you women, out there?

I'm not telling you, what to do. But I will say, research, and question, what you're told. Dr. Welby is no longer, in residence. This myth of the omnipotent doctor, is gone, forever.

Read and read and read. and do what is right, for YOU.

That is what I did. And I'm just ...so happy.

AND! The weather is BEAUTIFUL here, in Seattle!

And I'm healthy (for today) and enjoying it and having no SEs from useless adjuvant treatments that I never needed, anyway...

mdb

Anonymous · July 2008

MDB, the standard of care is far more complicated in prostate cancer because there are lots of different opinions from the medical community whether to have surgery or not, and there are lots of different treatment options, including radiation. I can't answer what I would do until I had the disease, understood the cancer's individual characteristics and read up on it. But I am pretty sure I would risk impotence if it significantly increased my chances of surviving the disease. In breast cancer, there is no debate in the medical community about the value of radiation when a person has had a lumpectomy. Radiation is universally recommended in that circumstance.

With regard to breast cancer, my understanding is survival statistics from a lumpectomy plus radiation are equivalent to a mastectomy. I have never read that survival statistics for lumpectomy without radiation are equivalent to a mastectomy.

I of course reject any possibility that the medical community pushes radiation only because it is profitable. I think such an opinion shows incredible ignorance, and yes, naivete and gullibility, i.e,. accepting without evidence and analysis the assertions of the alternative medicine scammers. But that's your problem.

I hope for your sake you never develop a second cancer in the breast or if you do that you discover it before it has metastasized. This disease is so unpredictable that even small tumors can metastasize through the blood or lymph nodes before it is discovered. That's not a risk that I would want my wife to accept, especially given how relatively risk free modern radiation techniques. Additionally, with radiation even if one has a local recurrence in the breast, the medical literature shows much less chance of metastasis, thus the reason there is no survivability difference as compared to mastectomy.

So yea, you are free to make any decision you make. Personally I think you are a total fool to ignore the best judgments of the medical community because you are under some misguided belief that they are only after your money. But again, that's your ox to bear. At least we will know, if my wife ever has a recurrence that she did everything she could to prevent it. You will have to live with your own stupidity if it happens to you, that is unless it kills you.

FEB · July 2008

Pam, all I can say is ditto and Amen! We are true sisters!

Dejaboo · July 2008

Thank you Linda Smile

Jaydee · July 2008

Hopefully before everyone takes the moral highground and leaves this thread I will get an answer to my question on whether anyone has any knowledge of a test I describe in my above post as to being given data before rads as to how we are likely to react to side-effects such as breast fibrosis many years after treatment. How common is breast fibrosis? If this test now exists it surely will help bc sufferers to make an even more educated decision before deciding on the rads/no rads question. Hoping for an answer!! Best wishes, Jaydee

MarieKelly · July 2008

For JAYDEE

Int J Cancer. 2008 Mar 15;122(6):1333-9. Links

Genetic predictors of long-term toxicities after radiation therapy for breast cancer.

Kuptsova N, Chang-Claude J, Kropp S, Helmbold I, Schmezer P, von Fournier D, Haase W, Sautter-Bihl ML, Wenz F, Onel K, Ambrosone CB.

Department of Cancer Prevention and Control, Roswell Park Cancer Institute, Buffalo, NY 14263, USA. nataliya.kuptsova@roswellpark.org

Telangiectasia and subcutaneous fibrosis are the most common late dermatologic side effects observed in response to radiation treatment. Radiotherapy acts on cancer cells largely due to the generation of reactive oxygen species (ROS). ROS also induce normal tissue toxicities. Therefore, we investigated if genetic variation in oxidative stress-related enzymes confers increased susceptibility to late skin complications. Women who received radiotherapy following lumpectomy for breast cancer were followed prospectively for late tissue side effects after initial treatment. Final analysis included 390 patients. Polymorphisms in genes involved in oxidative stress-related mechanisms (GSTA1, GSTM1, GSTT1, GSTP1, MPO, MnSOD, eNOS, CAT) were determined from blood samples by MALDI-TOF. The associations between telangiectasia and genotypes were evaluated by multivariate unconditional logistic regression models. Patients with variant GSTA1 genotypes were at significantly increased risk of telangiectasia (OR 1.86, 95% CI 1.11-3.11). Reduced odds ratios of telangiectasia were noted for women with lower-activity eNOS genotype (OR 0.58, 95% CI 0.36-0.93). Genotype effects were modified by follow-up time, with the highest risk observed after 4 years of radiotherapy for gene polymorphisms in ROS-neutralizing enzymes. Decreased risk with eNOS polymorphisms was significant only among women with less than 4 years of follow-up. All other risk estimates were nonsignificant. Late effects of radiation therapy on skin appear to be modified by variants in genes related to protection from oxidative stress. The application of genomics to outcomes following radiation therapy holds the promise of radiation dose adjustment to improve both cosmetic outcomes and quality of life for breast cancer patients. (c) 2007 Wiley-Liss, Inc.

PMID: 18027873 [PubMed - indexed for MEDLINE]

Related Articles

Polymorphisms in genes related to oxidative stress (CAT, MnSOD, MPO, and eNOS) and acute toxicities from radiation therapy following lumpectomy for breast cancer. [Clin Cancer Res. 2006]
Genetic predictors of acute toxicities related to radiation therapy following lumpectomy for breast cancer: a case-series study. [Breast Cancer Res. 2006]
Myeloperoxidase genotype, fruit and vegetable consumption, and breast cancer risk. [Cancer Res. 2004]
Predictive factors for late normal tissue complications following radiotherapy for breast cancer. [Breast Cancer Res Treat. 2007]
Polymorphisms in genes related to oxidative stress (MPO, MnSOD, CAT) and survival after treatment for breast cancer. [Cancer Res. 2005]
» See all Related Articles

ginger2345 · July 2008

Telangiectasias are removable by a couple of dermatological methods, though an expense I'm not sure insurance plans will cover. Therefore, one could choose rads even tho predisposed genetically to the tiny spider veins with the thought of removing them if they occur.

Karen56 · July 2008

artsee....I'm with you...enough already!!

mdb · July 2008

Worried Hubby wrote:

"MDB, the standard of care is far more complicated in prostate cancer because there are lots of different opinions from the medical community whether to have surgery or not, and there are lots of different treatment options, including radiation."

There is? I thought the "Standard of Care" was cutting out the cancer. I thought that was the "Standard of Care" for ANY cancer.

Please inform us. What are these other treatment options? For Prostate cancer?

Worried hubby wrote:

"In breast cancer, there is no debate in the medical community about the value of radiation when a person has had a lumpectomy. Radiation is universally recommended in that circumstance."

Yeah. I know. Yet, there IS debate in the medical community. Did you read that link from breastcancer.org, that I posted, above. I'll repost it.

http://www.breastcancer.org/treatment/radiation/new_research/20060217a.jsp

This was a 2006 study. Women were NOT helped. It was splitting hairs, in this study. 4% max, women, were "helped."

Of course, as my Radiation Oncologist told me, when I gave her this study. "But THAT study, is from Austria." Her meaning, there's no REAL DOCTORS, in Austria.

Worried Hubby:

:I have never read that survival statistics for lumpectomy without radiation are equivalent to a mastectomy."

Yeah, that's because they stopped those studies, in the US, 30 years ago.. When back then, when it was "proven" with no digital mammography, and when women presented with 5cm LUMPs that if they took them out, and gave them radiation, the cancer didn't come back.

That is NOT the case, now. By now, women are presenting with 2mm DCIS. Not even a cancer. And the docs are forcing this radiation, on these women.

And this is just, WRONG.

It was WRONG, on my 2cm IDC, ER/PR+, HER-. So, I didn't do it. And my breast cancer has NOT come back. Two years, later.

Yet, I'm on it. If the cancer comes back, I'll get it cut out, again.

Worried Hubby:

"I of course reject any possibility that the medical community pushes radiation only because it is profitable. I think such an opinion shows incredible ignorance, and yes, naivete and gullibility, i.e,. accepting without evidence and analysis the assertions of the alternative medicine scammers. But that's your problem."

Hahahahaha!

I find your naivete and gullibility, unbelievable.

Do you read these boards, AT ALL?

The medical community pushes the radiation so that they will not be sued. Based on 30 year old studies.

Worried Hubby:

"This disease is so unpredictable that even small tumors can metastasize through the blood or lymph nodes before it is discovered."

Can you provide me with a link, where this has happened?

My rad onc docs told me this, too. Yet, I've never seen any studies, where this occurred. WHY would my 2cm IDC, cut out with HUGE margins, sentinal node, negative. Suddenly metatasize through the blood or lymph nodes? That makes, no sense, to me.

How would that even ... happen?

Worried Hubby:

"So yea, you are free to make any decision you make. Personally I think you are a total fool to ignore the best judgments of the medical community because you are under some misguided belief that they are only after your money. But again, that's your ox to bear."

Hubby, I did NOT not do the radiation, because they were "after my money."

Unlike a LOT of people, I have GREAT health insurance. My insurance would have paid for the radiation, 100% No cost, to me.

I chose to not do, the radiation, because I did not perceive that if offered me ANY value. And I believe this, to this day. July 12, 2008.

As I've said, repeatedly, if my breast cancer comes back, I'll get it cut out, again. I'm continuing, to be monitored, with mammos.

To just sum up ... In early stage breast cancers, the effects of the radiation treatment that the docs truly force, on you, are not worth it. Especially, with women with DCIS. Which isn't even a cancer.

A "Cancer" is something that has spread. DCIS has NOT.

To conclude, yeah, worried hubby, I do have to live with decisions. And I am totally great with it.

Because I made MY OWN decison. On my treatment plan. I didn't trust some "standard of care" or anything, else.

I have never been happier, in my life!

I hope that you and your wife are, too!

PS Sorry for all of the weird formatting..

jrw · July 2008

wow i have spent all morning reading through all your comments you are all truely brave and wonderful people.

I am from UK and attending Barts hps in London, i have stage 3 breast andlymph cancer and because the tumor was so big I am having chemo first to shrink it proir to surgery. I have just finished 3 of 8 treatments. After surgery comes radiotherapy which i know nothing about hence my research here. We have the NHS system which means we dont have to pay outright as you do for our treatment, we pay national health contributions from our pay packets each month for life. (well in a way we do pay) but if rad was money making then it wouldnt be advised for us to have this as we dont get the bill at the end of the treatment. BUT i have read all your comments regarding rad treatments with concern and will research more into it before taking it. My tumor is on the left hand side, one of you said you would have insisted on an apron to protect the other parts of the body which i will certainly do so if i decide to take this option so thank you for that advise.

You are all so knowledgable out there, we just take it for granted that doctors know best and just go along with it, my mind has certainly been changed on that one so THANK YOU ALL OF YOU for sharing all your stories on line here. I wish you all a very speedy recovery and hope that your cancers never return. You know i hadnt thought of it returning until now, i am just taking a day at a time which is silly and life must be re-evaluated from now on in. You have all been so enlightening thank you all for your help here.

Anonymous · July 2008

mdb, arguing with you as with most quacks is a total waste of my time. Good luck to you. I hope for your sake you do not have a recurrence. The odds are of course in your favor. On our end, we have chosen to reduce the odds even more through radiation. Good luck to you.

Anonymous · July 2008

MDB, I was going to ignore your post because when you wrestle with a pig you'll both get dirty, and only the pig will enjoy it, but I do need to comment on this statement of yours:

This disease is so unpredictable that even small tumors can metastasize through the blood or lymph nodes before it is discovered."

Can you provide me with a link, where this has happened?

My rad onc docs told me this, too. Yet, I've never seen any studies, where this occurred. WHY would my 2cm IDC, cut out with HUGE margins, sentinel node, negative. Suddenly metastasize through the blood or lymph nodes? That makes, no sense, to me.

This exact thing has been my greatest concern these last few months. My wife who is 47 has had annual mammograms since she was forty, including digital mammograms. None of them found her cancer. She found it herself this past January. When excised by excisional biopsy, it was 1.3 centimeters. What scared me was going to sites like this or ask an expert at the John Hopkin's site where women related how even with smaller tumors they ended up with metastasis, i.e, going from a stage 1 to a stage 4 cancer in a short period of time.

Already diagnosed with a 1.3 cm tumor, and not clear margins, we went to a National comprehensive cancer center, and met with a surgical oncologist who we absolutely adored. One reason was this guy was very up-front about the possibilities of what COULD happen with such a tumor, including invasion through the blood or the lymph nodes, but he assured us he would be there with us every step of the way and that he has some pretty strong weapons to fight. The second surgery indicated no remaining cancer and Node-Negative. Her cancer also was er-pr positive, her-2 negative. Oncodx score was 11. The surgeon was very happy with the results but referred us to the Oncologist for a recommendation. The center's oncologist recommended against chemotherapy based on that onco score (my gosh, there went 50K or so the center could have earned if my wife had chemo). She and the surgical oncologist both however recommended radiation, but suggested having it done in our local area since the daily treatments could not be done feasibly at the center which was a 140 mile drive from our home. (There went another 30K or so they could have earned).

We are pretty happy that the risk of recurrence is low, but if she can get it lower by a few percent via radiation than we are willing to do so. Unlike you, I do not place great faith in Mammograms or radiologists and I want to reduce the possibility of the cancer coming back in the first place. Otherwise, per many of the letters from people on these boards and others, the damn tumor can in fact metastasize before we even know it is there. We are simply not willing to take that chance. And for some reason, with radiation, even if there is another local recurrence the chance of metastasis is much less. I don't understand why but that is what the statistics show.

So per the people on this board itself, you are wrong about whether these smaller tumors can metastasize or not. One it metastasizes, your chances of survival go way down. We want to avoid that possibility if possible. So my wife will deal with some skin irritation for a few weeks for the peace of mind and reduced chance of recurrence.

anneshirley · July 2008

I had a very small tumor 5mm, no nodes and no vascular involvement but I was HER2 positive. I didn't want radiation but all my doctors insisted it was the protocol with a lumpectomy. Half way through I decided to quit as I was having real issues with my skin; however, radiologist talked me out of quitting, telling me that half was worse than none. She also told me that angiosarcoma, a type of cancer, which can happened years later after radiation, was very very rare. I'm less than two years out and have to return to New York (from Maine) for a re-excision of a lesion to be sure it's not an angiosarcoma. Right now, they think it's an atypical post-radiation vascular lesion, which some think is a precursor to the more fatal kind (angiosarcoma). So, radiation is not as benign as some doctors suggest. Knowing what I do now would I have still gone through with radiation--I believe so! It's a crap shoot, but I believe the statistics are such that you can feel safer with radiation. Just make sure you get a good radiologist, who is using the latest equi[pment and is very careful to only radiate the smallest possible area. Good luck.

Worried: It's really not just a few weeks of skin irritation, as I mention above. Radiation is not easy for every one, but also as I said above, even with this AVL and a possibility of a lethal skin cancer from radiation, I believe I would still have gone ahead. It's a worry no matter what you decide.

Jaydee · July 2008

Marie Kelly - Thanks for taking the time to post the information I was looking for. I am comfortable with my decision to have radiotherapy but now over the initial upset of the bc diagnosis and most of the treatment (apart from Tamoxifen), my mind tends to look for other complications and I occasionally just need re-assurance. Find these Boards, on the whole, very informative and educational and wish you all well, Jaydee

easyquilts · July 2008

worriedhubby...What you have said makes sense...Why would anyone refuse a treatment that would recuce chances of a recurrence....I have pure DCIS...Grade 1...lumpectomy and rads to begin this week. I will not be able to take Tamoxifen, due to other health issues, so having radiation is my best shot at preventing a recurrence later on....and I'm taking it...My surgeon insists, and I agreed with her.

Yours is the voice of reason...

Sandy

easyquilts · July 2008

Hi to All....Man,,This has been one interesting read! So many opinions, stats, stories, etc. I just wanted to say that making the decision to have rads after my lumpectomy was NOT hard...My pure DCIS was unifocal, small, and grade one....I will not be able to take Tamoxifen, due to my CAD, so radiaton is my best shot at preventing a recurrence in the future....

Yes...It is true that many women with pure DCIS would not have a recurrence regardless of further treatment, but, no one knows who those women are or could be...So....Even though radiation may not be truly necessary for many women, it makes sense for those of us who have lumpectomies to have it. I know that I am not willing to take the chance of being one of the unlucky ones who would have had a reacurrence without rads....It was bad enough that I fell into the unlucky 20% whose calcs were cancer....<sigh>...

So...I am looking forward to my rads...and yes..I embrace them...I don't want to ever go through this again..and am trying to give myself the best chance never to have to. I know the chance that this awful thing will return will always be in the back of my mind...But..Hey...After having had a heart attack seven years ago, I'm used to waiting for the other shoe to drop....Althouogh i have to admit that I am feeling a bit "squeezed" now....betwenn breast cancer and CAD...I have five stents, and know that there are blockages forming in both carotids....So....I am being as agressive as I can be...Not having radiation treatments was never an option for me once it was decided that a lumectomy would be my best course of action...My BS insisted on it, and I agreed with her.

Sandy...Proud Gramma to Ryan, Michael, Alex, Daniel and little Andrew..(he's two and just too cute)

louishenry · July 2008

Well... Wow... I am not as well versed on the topic of rads and invasive, so I won't pretend. Having said that, I can contribute to DCIS and no rads. Cancer, no cancer, pre-cancer, it's really just semantics to me. My docs did call it a pre-cancer, though. I had a consultation with Micheal Lagios, who, along with Mel Silverstein developed the VNPI index on DCIS. Low scores, 4,5,6, did not benefit from rads. I was a 5. No rads. Micheal Lagios recommended a book by a geneticist named Patricia Kelly called "Assessing your true risk of Breast Cancer." It's great. She makes an interesting point about DCIS which is great. Twenty years ago, a mastectomy was it. Then, later it was lump/rads for all. Now, we have come such a long way with research, that Docs who have done their homework realize that it is not a one stop shop for all. Please do not think for a minute that I wouln't have done them if my path were different, say 2 cent with 2mm margins and grade3 with necrosis. But, mine wasn't. It was the opposite. I am just thrilled that a lot of progress has been made with DCIS. I bet in 10 years, esp. with digital mammos, more and more women will not be having rads for low grade, small lesions. Nada

jrw · July 2008

well i think i will have the rad after surgery, i dont want to go through this again and i will do anything to stop it. I want to ensure i live for my kids and eventual grandkids so bring it on...

thanks to all who have helped me make up my mind. xx

MarieKelly · July 2008

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worriedhubby wrote:

"What scared me was going to sites like this or ask an expert at the John Hopkin's site where women related how even with smaller tumors they ended up with metastasis, i.e, going from a stage 1 to a stage 4 cancer in a short period of time."

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I'm sure most people would find something like that scarey. But next time you read such things, please pay attention to the specific details about the person's cancer. Sometimes people don't even mention what grade their cancer is. Along with various other prognostic factors, grade matters - and it matters a lot. Small, low grade tumors do NOT rapidly advance from a stage 1 to a metastatic stage 4 in a short period of time. Only aggressive cancers act that way. There is simply no equality in comparing a small high grade tumor to the same size low grade tumor - they are as different as night and day. Breast cancer is a heterogeneous disease.

Small, LOW GRADE invasive tumors, especially in menopausal women, are the least likely to be lymph node positive and also the least likely to become distantly metastatic...and these are the ONLY kind (other than very small DCIS) currently being studied regarding the possibility of omitting radiotherapy. In fact, If I'm not mistaken, I think the standard has recently (this year) changed regarding DCIS in making radiation after lumpectomy now optional when it's cleanly excised and 5mm or smaller.

So you see, the standards regarding lumpectomy and radiation are already in transition and moving in a direction AWAY from automatically doing whole breast radiation on everyone who has a lumpectomy for breast cancer. Lots of change in the works - but changes occur slowly over a long period of time. What's a standard of care today, might eventually be considered inappropriate treatment. Already, partial breast irradiation is becoming more common, those with small, DCIS lesions now have an OPTION within the standard for radiation, and subsets of women with small, invasive, low grade breast cancers, who are the least likely to benefit from radiation, have and continue to be identified. Soon, they too will likely be given an option within the standard. In the same way in which the standard for delivering chemotherapy to all with an invasive cancer greater than 1cm has recently changed to allowing an option of omitting it based on oncotype results, so too are standards changing for radiation after lumpectomy. Just a few years ago, almost everyone with a tumor greater than 1 cm would get chemotherapy, now many are spared, just like your wife has been.

I'm very happy that you and your wife are content and confident in your treatment plan - that's the most important thing for anyone. However, I think you need to try and understand that there are those among us out here who made different choices for ourselves and are also content and confident in those choices. We didn't make the wrong choice - we just made a different choice. Those of us who go against the grain are maybe just a bit more forward looking in our thinking than others who don't - looking out over the horizon to see what's coming next and looking past the individuals trees and seeing the whole forest and then incorporating what we see into our treatment decisions.

Anonymous · July 2008

Radiation After Breast Cancer Lumpectomy Surgery Saves Lives, Says Lancet Study

By Elizabeth M. Whelan, Sc.D., M.P.H.

Americans have a unique aversion to risk __ particularly when it comes to pharmaceuticals and medical treatment. We want all the benefits of modern medical technology, but many of us won't tolerate any of the risks associated with them. We've come to expect absolute safety as well as assurances of efficacy: that is, we want an ironclad guarantee that the drug or procedure works as expected, with no serious downsides.

The weighing of benefits versus risks has long been part of the decision_making process by physicians and their patients when it comes to the use of radiation, or radiotherapy, following breast_conserving surgery, more commonly known as lumpectomy.

Breast irradiation can cause scarring, fatigue, limitation of limb movement, even a slight increased risk of heart disease and other cancers. In about 1 in 4 cases, women who have undergone surgery for breast cancer do not undergo subsequent six_ or seven_week radiation treatment, and fear of the side effects is no doubt the deciding factor for many women.

While irradiation is standard treatment at many large medical institutions in the U.S., many women and their physicians opt for a process known as "watchful waiting" __ essentially, careful monitoring to see if a recurrence of breast cancer develops after surgery, in the belief that mastectomy is always an option in that event.

"Watchful waiting" assumes that the risks of radiation outweigh the benefits, but an important new study in the British medical journal, the Lancet (December 17, 2005) concludes just the opposite.

Sir Richard Peto and his colleagues at Oxford University statistically re_examined 78 high_quality studies, reports involving some 42,000 women, concluding that the benefits of radiotherapy after lumpectomy definitely outweigh the risks. The authors conclude that "watchful waiting" is simply not a safe option, since the cancer may have spread beyond the breast by the time the recurrence is detected.

Normally, breast_conserving surgery is aimed in part at removing only cancerous tissue, leaving as much of the breast as possible in the surrounding area intact. Like recently_developed techniques for removing the cancerous portion of the prostate without simply eliminating all sexual functionality in the male patient, breast_conserving surgery can be a great boon to patients in allowing them to proceed with their lives in as normal a fashion as possible and maintain their confidence and self_image. Breast_conserving surgery may, however, leave a few cancer cells behind. Radiotherapy, as the Lancet study notes, is thus the recommended follow_up to surgery, but that recommendation is not always followed.

This latest study establishes that radiation treatment is the most effective post_operative treatment to reduce the risks of recurrence and death after breast_conserving surgery __ despite the inherent risks of the radiation process. For the 1 in 4 lumpectomy patients who currently do not get radiotherapy, the Lancet study is a wake_up call.

The study authors note that in addition to radiotherapy reducing the odds of cancer recurrence, we now know that it also reduces the long_term odds of mortality. The odds of mortality 15 years after surgery are approximately 35.9 percent without radiotherapy and only 30.5 percent with radiotherapy. It may sound like a small mathematical difference but translates into lives saved.

With radiation therapy, as with prescription drugs, the demand for absolute safety, zero risk, is impossible to satisfy. The key is to weigh the benefits against the downsides. For breast cancer patients who have undergone lumpectomy __ or are about to __ the new Lancet study should end that debate, once and for all.

Dr. Elizabeth M. Whelan is president of the American Council on Science and Health (See also: ACSH press release reacting to study

MarieKelly · July 2008

San Antonio Breast Cancer Symposium
Recap of the 27th annual conference

Radiation May Not Be Necessary for Women Over 60

Women over the age of 60 with low-risk breast cancer may not need to receive radiation therapy after surgery, according to a Canadian study.

David McCready, MD, of Princess Margaret Hospital in Toronto, reported on a study in which women over the age of 60 with low-risk breast cancer were randomly assigned to two treatment groups. One group received tamoxifen for five years after lumpectomy surgery; the other group received full breast irradiation after surgery followed by tamoxifen for five years.

The current treatment standard recommended for most women with early stage breast cancer is breast conservation therapy, consisting of lumpectomy followed by radiotherapy. The purpose of the radiotherapy is to kill any tumor cells in the remaining breast area that may have been missed by the surgery. For patients with low-risk disease (small tumors, negative axillary lymph nodes, estrogen receptor-positive), this is typically followed by five years of tamoxifen treatment.

The recommended radiotherapy is an intensive regimen usually requiring up to six weeks of daily treatment. For some women, especially those who are older and may have mobility problems, the logistics of coming to a treatment center every day can be daunting, so much so that some opt to have a mastectomy instead of a lumpectomy to avoid the radiation therapy.

McCready found that the women in the two treatment groups in his study had similar rates of survival, of death from breast cancer and of metastasis, regardless of whether they received radiotherapy. However, the rate at which disease recurred in the breast was significantly different between the two groups, with a recurrence rate of 7.7 percent in the group that did not receive radiotherapy compared with 0.6 percent in the group that did.

McCready examined the data to see if age and tumor size affected the rate of recurrence in the breast. He found that women older than 60 tended to have low recurrence rates whether or not they received radiation therapy, and that the rate at which cancer recurred in the breast was affected by the size of the original tumor. In women older than 60 whose tumors were more than 2 cm in diameter, the recurrence rate was about 11 percent and in women whose tumors were 1 cm to 2 cm in diameter, the recurrence rate was 6 percent to 7 percent.

For women with very small tumors (less than 1 cm, approximately one-half inch in diameter), however, the recurrence rate was very low - 1.2 percent at five years and 3 percent at eight years. These rates are higher than those seen in women who received radiation therapy (where no breast recurrences were seen), but in absolute terms, they are quite low.

Based on these findings, McCready suggests women over the age of 60 with low-risk breast tumors may consider treatment with tamoxifen only, avoiding the physical and emotional difficulties of radiotherapy.

- SABCS

MarieKelly · July 2008

No Radiation Following Lumpectomy for Ductal Carcinoma in Situ: Presented at NCCN

By Ed Susman

HOLLYWOOD, Fla -- March 10, 2008 -- Radiation therapy may be omitted in some patients following lumpectomy for the treatment of ductal carcinoma in situ (DCIS) according to the Breast Cancer Guidelines Committee of the National Comprehensive Cancer Network (NCCN).

The Committee presented the guidelines here on March 8 at the NCCN's 13th Annual Conference: Clinical Practice Guidelines and Quality Cancer Care.

"This represents a major change in the breast cancer guidelines," stated Stephen B. Edge, MD, Professor of Surgery, State University of New York at Buffalo, and Interim Chair, Department of Surgical Oncology, Roswell Park Cancer Institute, Buffalo, New York. Previous guidelines differentiated between small, low-grade DCIS and larger cancers in allowing women with smaller tumours to opt out of radiation following surgery.

While radiation therapy reduces the risk of local recurrence, Dr. Edge said studies have found no apparent overall survival benefit for patients with DCIS who receive radiation following lumpectomy. "No controlled data show any survival difference by type of treatment," he noted.

The new guidelines eliminate the category referring to the size and grade of the DCIS, and now suggest that in patients diagnosed with DCIS at stage Ia with no nodal disease and no metastases, the choice of treatments are as follows: (1) lumpectomy without lymph node surgery plus whole-breast radiation therapy, (2) total mastectomy with or without sentinel node biopsy, with or without breast reconstruction, or (3) lumpectomy without lymph node surgery, without radiation therapy.

In a footnote explaining the change, the guideline committee wrote, "Whole-breast radiation therapy following lumpectomy reduces recurrence rates in DCIS by about 50%. Approximately half of the recurrences are invasive, and half are DCIS. A number of factors determine local recurrence risk, including size, tumour grade, margin status, and patient age."

"Some patients may be treated by excision alone, if the patient and physician view the individual risks as 'low,'" noted Dr. Edge. "All data evaluating the three local treatments show no difference in patient survival."

Dr. Edge concluded that the new guidelines essentially "place the onus on the physician to have a discussion with the patient as to which procedure should be used."

[Presentation title: Update: Breast Cancer Guidelines.]

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mdb · July 2008

Worried Hubby wrote:

"We are pretty happy that the risk of recurrence is low, but if she can get it lower by a few percent via radiation than we are willing to do so."

That is so, very true. The radiation WILL reduce the risk of recurrence. By a few percent. And, you said you were both terrorized, with the possibility of a rapid metastasis. Without, the radiation.

Obviously, you made the right decision. You and your wife. For your wife, to have the radiation.

Although, for my part, I have a different, risk, threshhold. Actually, I have a very high risk threshhold.

And to just repeat, I've said this, on this board, before, but maybe a first time for you, worried hubby ...

I've already been diagnosed, Operated on, and had so many tests for this cancer called Leiomyosarcoma. Leio is a soft muscle tissue, cancer. It's very rare. And VERY deadly. It mostly strikes women, in their uterus. The Leio hides, in uterine fibroids.

I was lucky. My Leio presented, on my butt. My PCP told me I had a cyst, it turned out to be Leio. This totally, deadly, cancer.

But it was cut out, with HUGE margins. 3cm. This was December, 2004. And I can't even recount, the tests that I've had, since then. For the Leio. An Upper GI, a Liver MRI, a transvaginal Ultrasound, too many Chest/Abdomen/Pelvis CTS, to count.

Ha, the next one is scheduled for July 23, 2008. Chest/Abdomen/Pelvis CT.

Worried Hubby, and maybe some other people, you have your panties, in a knot, trying to prevent some really low grade breast cancer.

Like breast cancer is the only thing that will ever kill you. And you have to just kill yourself, with treatments, to prevent it.

I don't understand it. At all.

This weekend, Tony Snow, age 53, died of colon cancer. My age.

Anything, can happen to us, at anytime.

I will NEVER get any adjuvant treatments, for low grade breast cancer. Which is what I had. Never in a million years.

Anyone reading this can treat themselves, out of a life, but I'm not. Because the next threat, is just around the corner.

I met mine. The Leiomyosarcoma ...

And who knows. Last January, 2008 my 58 year old sister had Stage 4. Ovarian cancer.

Maybe that's next, for me.

And HA, I should just KILL my body for this low grade breast cancerl?

No. Never.

mdb

Radiation necessary in an early stage cancer

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