Refusing radiation treatments?

insist on the new oncotype for DCIS test  and determine your recurrence chances.  Most oncs and radiologists don't know the test exists,  Only out since dec 2011.

Now that my humble pie is fully digested just wanted to send one more post before my medical appointment especially to thank Beesie for such a detailed informative reply.  Thanks Beesie, also thank you Infobabe for link for some light relief.  I've already had a detailed radiation consultation and in my case without the radiation I was told there was a 30% chance of it coming back.  However there wasn't any mention in the percentage of it coming back with the radiation.  The thing is, you can have chemo, rads, mx you name it and it can still come back!  The chemo ship has well and truly sailed with me.  I've seen my mother go through chemo and the outcome was the absolute worst so that solidified my decision not to have it apart from just the clear margins etc. Back to the rads, my recommended course is 5mins a day every work day for six weeks so that equals 2 and a half hours of continuous radiation.  The very thing docs used to warn us against having. If this wasn't all very serious it would be like you have to be joking!  My naturopath said radiation is the number one worst thing to bring on cancer and that's why in our ever expanding technology world more and more of us are getting it.  But who knows there could be a myriad of things such as in China that has one of the lowest cases of breast cancer could be attributed no them not drinking cows milk.  Chinese call breast cancer a 'rich womens disease' as it is only the rich that can afford a western diet that of course includes milk and dairy.  Traditional Chinese see cows milk as only for babies and old people.  So again who knows but I've chosen myself not to drink cows milk since being diagnosed.  And it's not like I'm not going to do anything, I'm going to do a myriad of things apart from eating a lot more greens etc, I'm going to nourish myself a lot more physically, mentally and spiritually.  Yes some may think I'm brave, some will think I'm stupid (like my sister) but having rads fills me with dread, I think I'd rather spend thousands on radiowave treatment instead if it came to the crunch.  Anyway I'll keep a close eye on things with checkups and cross bridges when I get to them.  Thanks all for your wishes

Jo-Beth,

There have been many studies done on hundreds of thousands of women that have all basically shown a similar result, which is that radiation generally reduces the risk of recurrence by 50%.  So if your risk of recurrence is 30% without rads, then rads should be able to bring your risk down to 15%.  Certainly rads, like all treatments, comes with risks, but the risks are nowhere near as high as the 15% benefit that you will get.  With any treatment you have to look at the pros and cons and weigh the benefits vs. risks.  The result is different for everyone because we each look at the pros and cons differently, and we each start off with a different amount of risk so the benefit from the treatment will be different.  In your case, the benefit from rads, at 15%, would clearly outweigh the risks (which I expect would be less than about 5%).  As for the pros and cons, that's an assessment that only you can make.

The thing to remember with radiation is that it's been given to women with BC for years. And it continues to be refined, so that the risk from radiation continues to be reduced. Most women who get rads - the vast majority - do not suffer any long-term negative side effects. This doesn't mean that there is no risk. And it doesn't mean that someone who has a very low recurrence risk without rads should go ahead and have rads anyway.  But it does mean those who will get a significant benefit from rads in terms of breast cancer risk reduction should not avoid such a beneficial treatment simply out of fear (a fear which, if voiced here, will be strongly reinforced by others who have the same fear but who may not have much information about the real risk of rads).  Understand how much rads will benefit you, learn about what the risk level really is, and then decide.  

As for dairy, there's lots of discussion about the Chinese diet and how bad dairy is for women with breast cancer.  It's simply not proven. As someone who consumes a lot of dairy, I was worried when I first read about how dairy might be harmful.  So I dug into it. Really dug into it.  In the end I read reports that detailed the results of about 50 different studies of breast cancer and dairy, done in all countries (including China), over many years.  The net take-away from all of it is that dairy does not appear to be harmful at all when it comes to breast cancer risk, and in fact in pre-menopausal women a number of studies actually showed that diary consumption reduced breast cancer risk.  I'm not saying any of this to convince you to start consuming dairy again, but just to say that everyone needs to be careful in what they believe from what they read.  It's easy for someone to pick up one particular point from a research study, out of context, and reach a completely erroneous conclusion.  If that conclusion is reported on the internet and if it resonates with people, it can take on a life of it's own.  And suddenly it's the truth.  From all that I've been able to find, that seems to be what's happened with dairy as it relates to breast cancer risk.  

Edited to Add:  To support my previous point, I thought I'd include the following excerpt. "The results of dairy food consumption and breast cancer risk are conflicting, and their relationship has not previously been studied in China. The objective of this study is to examine the association between dairy products, calcium intake, and breast cancer risk among Chinese women. A hospital-based case-control study was conducted among Chinese women in the Guangdong province from June 2007 to August 2008. Four hundred and thirty-eight consecutively recruited cases with primary breast cancer were frequency-matched to 438 controls on age and residence. Dietary intake information was collected by interviewers using a validated food frequency questionnaire. Odds ratios (ORs) and 95% confidence interval (CI) were estimated using unconditional multiple logistic regression adjusted for various potential confounders. We observed a statistically significant inverse association of dietary calcium intake with breast cancer risk, with the adjusted OR (95% CI) of 0.35 (0.22-0.56) comparing the highest with the lowest quartile. No significant association was found between dairy products measured either by dry weight of dairy product or dairy product protein intake and breast cancer risk. Our study supports a protective effect of high intake of dietary calcium on breast cancer risk, and no association with dairy product intake." 

Dairy products, calcium intake, and breast cancer risk: a case-control study in China. 

 lbrewer

My MO said that I had to be on Tomoxifen to have the test and my insurance probably wouldn't cover it.  Wrong on both counts.  The test is done both with Tomoxifen and without and my insurance does cover it.

In the end, I had a second path opinion by Dr. Michael Lagious.  I am still curious what the Oncotype would have said.  It is too early in the trials for this test to be able to base a medical opinion on it, but maybe soon we will know it's value.

First of all, thank you Maize for starting this thread! Not only am I new to this kind of venue, but also to DCIS. Having said that, Ladies have you opened my eyes! I was diagnosed on July 2, 2012. I have had a biopsy and I do k ow it is Stage 0. I'm a little naive at this point, so bear with me. My husband and I met with a team of docs at the only NCI-approved facility in my state. Going in I was set with the standard lx + rad treatment. After hearing what the rad "fellow" had to say I was deflated and my husband was absolutely against rad. What's funny is my left breast is the breast with DCIS and nothing was said about heart involvment or any other possible problems. Only that it could get the top layer of my lung which could result in a 15% reduction in oxygen intake. No thank you! So we decided at that time on a skin-sparing mx with implants. Yahoo! No more cancer and great boobs? Not! I did the research on both silicone and saline. No thanks! So, where does this leave me? I have yet to have my lx. Won't know path on that, of course u til after. I've been told there are about 4 microcals left after biopsy. I've devoted this day to reading this thread and I just finished page 4. I've cried and I've laughed. Sitting here on my deck with a glass of wine I feel I've gotten to know you all! Beesie, you are a walking book of knowledge, as are you infobabe. Selena, you are a gem! At this point I'm leaning towards lx only, depending on margins, of course. I am entertaining what you did Shayne. To early to say. I'm very interested in consulting with Dr. Lagios. Will keep you posted after my lx. But, for now I need to finish reading this thread!

vik11

Do you have the pathology report.  If you don't, get it.  Just make a phone call to your surgeon.  Do you know grade and size?  Hormone status?  Your age is important too.

You need to know a lot more before you decide what to do.  I take it you have not had a lumpectomy.  MX will have the most certain outcome and something I have never discounted for myself.  You probably know about internal radiation, Mammosite or SAVI.  That spares lung and heart as the radiations only goes out a short distance in the breast.  It is twice a day for five days but you have to qualify.

So there is a lot to study up on.   All our choices are lousy ones, but you will get through this.

Please come back here and we will help you sort it all out. 

Betsy -



You know, the whole idea of an implant bothers me from the standpoint that they have their own set of potential problems. At this point, I want the least amount of surgery done as possible with the greatest and safest possible outcome. Down the road, if there is a reoccurance, maybe a mx is the way to go. Thank you for your input. No such thing as too much info from other's experiences.



Infobabe -



Thank you for the additional info. I do have a lot more research to do and this thread has been a lifeline for me. I have not had lumpectomy yet. I suspect that will be sometime in next 3-4 weeks. I will definitely look into having Dr. Lagios consult on findings. It looks like you had lx only? That's my preference depending on how path comes back after lx, but also thinking (if I'm a candidate) about interal rad. Will watch the droz link you sent. And, thanks for your support!

Vik11

It does not sound like the rad fellow was holding back on heart issues. You got a good discussion of lung concerns so why would s/he hold back on heart? Conformal techniques in radiation treatment have improved a lot in recent years (since most data) and where your tumor is matters. Unless it is near the chest wall, the heart may not be in jeopardy.

infobabe (and you truly are) -



Thanks for the info on possible heart involvement. Sounds like one less thing to have to be worried about. Finally, something positive! I read about the stem cell breast reconstruction. Very interesting! My daughter has a friend who works in stem cell research. I passed this info on to her to ask her friend if she knew much about this. It sounds like it's still in the experimental stage and I wonder where it's being done? Looked at Dr. Lagios's website and was very impressed. What was your impression after he did your second opinion? Tomorrow will look at website for Oncotype.



Will try to get the stats on my biopsy tomorrow so I can have something to come back and report on.



Hugs back at you!

infobabe -

I forgot to mention to you in earlier message that I asked about Oncotype today and was told that it was for invasive cancers, and did not apply to DCIS.  I have not looked at their website yet and I've been on the go last couple of days, but will get to it.  Also was told about the Van Nuys Prognostic Index which I also want to check out.

 vik11

Whoever told you that is wrong.  It can be proven that they are behind the curve.  Same with my MO.  My RO did say he would order it but would not base a medical decision on it

Linda-n3ypb -



Thank you for the info. Yes, you are right. Implants are not for me. Nor is external rad. I will talk to my surgeon tomorrow about other possibilities. I am not sure how all works together if I am able to do either nothing (depending on path after lx next week) or internal rad. I will look at those reconstruction boards that you recommended.

Five years ago I had a lumpectomy for DCIS, and it was my surgeon that said, because the cancer was so tiny, and my margins were good, that I was more likely to be overtreated than undertreated. She recommended taking tamoxifen for 5 years and not having radiation. I consulted two different radiologists. The first one refused to look at my particular case and think outside the "standard of care" box. The second one talked with me at length, looking at my particular numbers and my plan for monitoring my health, and agreed with my surgeon. It was a tough decision to make, with the radiologists in conflict. But I'm glad I didn't have radiation. If I get DCIS again, I can have it then. Otherwise I'll be going off tamoxifen in November with very few side effects and no recurrence of DCIS.

GaLynne -

I am very interested in knowing your outcome being on Tamoxifen being 5 years out.  I, like infobabe am really so very leery of it and it's side effects.  I am also wondering if internal radiation was offered to you?  Since I am now deciding which way I want to go, after having only biopsy at this point and being a Stage 0, I am so leaning towards internal radition with the Savi applicator.  I am meeting with a second surgeon tomorrow a.m. to discuss.  Orginal surgeon and her facility did not offer this.  I am hearing good things about it and since I am still fairly young (55), I feel I need to reduce chance of recurrence even tho I'm in a "pre-cancer" state.  I want the best odds at the least expense.  Hoping to get answers tomorrow from a surgeon that comes highly recommended.  Next on the list -- enhancement in the wake of lumpectomy if needed.  Leaning towards fat grafting.  Any thoughts out there????