Refusing radiation treatments?

Thanks to all of you for your responses.  The information you gave has been helpful.  Beesie, thank you for the links and info. I wanted to see what it actually looks like and get an idea of the typical risks.  Deder, I will let you know what I do about radiation by posting on this board. We are in the same boat. Momzr, there is always the concern about more microcalcification clusters, isn't there?  One of my doctors said for women having DCIS means a life-long surveillance thing.

Here are some links about radiation and DCIS that I found: These were written by medical experts.  Since I am no expert, I don't know what to think about the long-term risks versus the long-term benefits.  Maybe the radiology oncologists and radiation physicists have ways of greatly reducing risks.

Second Cancers Caused by Cancer Treatment
http://www.cancer.org/acs/groups/cid/documents/webcontent/002043-pdf.pdf

Long Term Effects of Radiation
http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/patient-and-family-support/life-after-cancer-care/long-term-effects-of-childhood-malignancies/life-after-cancer-care-long-term-effects-of-radiation.html

Radiation-induced cardiac damage in early left breast cancer patients: risk factors, biological mechanisms, radiobiology, and dosimetric constraints.
http://www.ncbi.nlm.nih.gov/pubmed/22391054

Which Breast Cancer Patients Should Really Worry About Radiation-Induced Heart Disease-And How Much
http://jco.ascopubs.org/content/24/25/4059.full

Possible late effects of breast cancer treatment
http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Lifeaftercancer/Lateeffectsbreast/Possiblelateeffects/Possiblelateeffects.aspx

[Is cardiotoxicity still an issue after breast-conserving surgery and could it be reduced by multifield IMRT?].
http://www.ncbi.nlm.nih.gov/pubmed/19370424

Hi Oldmom,

Having a 32% risk of recurrence over 40 years time---I feel the same way you and your husband do about the risks.  I understand why your husband doesn't want you to do it.  My RO said essentially that I could have some serious late effects from radiation, but that would be 10 years or so down the road. I don't really want to trade off DCIS for serious late effects 10 years from now and have regrets, if the DCIS can be treated without causing serious problems later. But then if the DCIS isn't treated as fully as possible, it might recur or become invasive and there would be regret.  Maybe Tamoxifen would be enough to prevent recurrence?  (A lot of women are unhappy about the side effects and the risk of endometrial cancer and blood clots.)

There seem to be discussions about people not dying from breast cancer after treatments for DCIS, but there is little mention of people possibly dying from other problems that might actually be late effects of the treatments intended to prevent invasive cancer.  On the other hand, not getting radiation may also be risky. One woman wrote that she decided not to do the radiation and her doctor was angry and she told her doctor that it was her life, not his, and that she really felt in her gut that radiation was not the right choice for her.

It seems very confusing.  There are so many questions and so many specialists who say they don't know the natural history of DCIS yet, or whether it is being over-treated or not, and that long-term studies have not really been done that provide certainty about what really is the best course of treatment for DCIS.  It seems that there are as many opinions as there are experts.

There aren't really that many options for women with DCIS:

Mastectomy or lumpectomy with or without radiation, Tamoxifen or maybe an aromatase inhibitor.  They were using Tamoxifen for early stage breast cancer way back in the 1970s and they were more rarely doing lumpectomies (wide excisions) and recommending some type of radiation treatment in the 1970s, though they preferred more radical mastectomies.   Some say the radiation treatment is safer today. Some say it isn't that much safer than it was years ago--that there are still risks to lung/heart/arteries/risk of secondary cancers, etc, and with DCIS, because they didn't start finding most of these cases until the 1980s, they don't know what the long term effects of the treatments for it will be or how to tell for absolutely sure which forms of DCIS could become aggressively invasive if untreated.  Some say that radiation doesn't scatter to other parts of the body as it used to, and some say there is scatter radiation that is unavoidable.  They have found DCIS in women who have died, after doing autopsies, and they did not die from DCIS or apparently DCIS that became invasive cancer, but they may've had a really low grade form of DCIS for many years.?? Some say that cancer can "seed" as a result of some surgeries and some say that it can't "seed" like that.

Some women said they chose mastectomies just so they don't have to have radiation. It seems a high price to pay for getting mammograms and it being found early.  You can always get a mastectomy later, after a lumpectomy, though you obviously can't get a lumpectomy after you've had a mastectomy.  I guess if you have radiation after lumpectomy, you can never have radiation again in that breast.  Some say the breast hardens, shrinks and becomes fibrous over time after radiation treatments, and some say it doesn't.  The experts say DCIS can recur as another DCIS or an invasive cancer and that any intermediate to high grade DCIS or larger sized DCIS regardless of type (solid, cribiform, etc.) should be treated aggressively.  They also say you can get a recurrence or another cancer in the remaining tissue after you had a mastectomy, though the risk may be lower, so you can still get cancer in the remaining tissue.  I was thinking this when I chose lumpectomy.   I hope it was the right choice.

Some doctors insist that you HAVE to have radiation if you have DCIS and a lumpectomy, that it is ALWAYS done. Two doctors told me that radiation treatments are ALWAYS done after lumpectomy for DCIS, without exception must be done. Dr. Laura Esserman doesn't seem to think that all DCIS should be treated with surgery and radiation. Some doctors think DCIS almost always leads to invasive cancer eventually if surgery and radiation are not done and some think that in some cases, maybe many cases, it does not. Who's right?

These statements below and many more have made me really want to take time to think about it all.  

"Until we know more, many experts believe the only option is to treat them all as if they're destined to break out of the milk ducts and into the remaining breast tissue. "Sometimes, with surgery, radiation and tamoxifen, we end up treating DCIS more aggressively than we do some invasive cancers," says Love. "It's a crime that we don't really know what to do." (Dr. Susan Love)
http://www.more.com/dcis-breast-cancer-treatment?page=6

"More invasive recurrences among irradiated patients: In our experience and the experience of others, the percentage of invasive recurrence after radiation therapy is greater than 50%. After excision alone, it is approximately 34%. In addition, the median time to recurrence is twice as long for the irradiated patients. If a higher percentage of recurrences among irradiated patients are invasive, this could lead to a higher mortality rate."

http://intl-jncimonographs.oxfordjournals.org/content/2010/41/193.full

Treatments linked to the development of second cancers
Radiation therapy

"Radiation therapy to the breast also increases the risk of sarcomas of blood vessels (angiosarcomas), bone (osteosarcomas), and other connective tissues. These cancers are most often seen in the remaining breast area, chest wall, or in the arm that had been treated with the radiation therapy. This risk remains high even 30 years after treatment."
Radiother Oncol. 2012 May;103(2):133-42. Epub 2012 Mar 3.

http://www.cancer.org/acs/groups/cid/documents/webcontent/002043-pdf.pdf
2012 Copyright American Cancer Society
Radiother Oncol. 2012 May;103(2):133-42. Epub 2012 Mar 3.

What have all these studies shown about radiation-induced breast cancer?

"These studies have revealed a number of things about radiation-induced breast cancer. First, female breast tissue is highly susceptible to radiation effects. Second, it takes a minimum of about 5-10 years for a radiation-induced breast cancer to develop. Third, greater levels of radiation exposure lead to greater risk of breast cancer, i.e., there is a direct dose and effect relationship. Finally, women's age at the time of exposure is also very important." (John D Boyce, Jr, DSc, Scientific Director,
International Epidemiology Institute, Rockville, MD 20850
When reproducing this material, credit the authors and the Program on Breast Cancer and Environmental Risk Factors in New York State. Copyright...)

Radiation generates cancer stem cells from less aggressive breast cancer cells
By Kim Irwin February 14, 2012

"Now, researchers with the UCLA Department of Radiation Oncology at UCLA's Jonsson Comprehensive Cancer Center report for the first time that radiation treatment, despite killing half of all tumor cells during every treatment, transforms other cancer cells into treatment-resistant breast cancer stem cells." "The team also found that the iBCSC had a more than 30-fold increased ability to form tumors, compared with the non-irradiated breast cancer cells from which they originated."
 
 The study was funded by the National Cancer Institute, the California Breast Cancer Research Program and the U.S. Department of Defense.

Is cancer caused by cancer stem cells, and does some types of treatment for DCIS activate or aggravate those cancer stem cells?

What causes lung toxicity?

https://www.caring4cancer.com/go/cancer/effects/lesscommon/acute-pulmonary-toxicity.htm

For people who have chosen radiation, I hope there will never be any late effects, severe or otherwise.  Maybe some sail through the treatments and years later are just fine.  Or not.  (This post turned out longer than I intended.)  I hope we both make the right choice. Best of luck to you!

Hi Shayne,

I asked about the brachytherapy and my doctor said it might be a possibility and then...I guess it can only be done before they suture you up?  

I am learning about this and trying to ask the doctors the right questions and trying to understand exactly what the options and risks are.  I think it's important to get treatment after surgery to prevent or ward off a recurrence, but there are so many, many reports of some women having real trouble with the side effects of hormonal treatments that it's a concern, too.  The risk of endometrial cancer from Tamoxifen may be lower than it could be, but if you get it, the option is apparently removal of the uterus and that's it. So far, I've encountered no one who has stated that they had no problems with hormonal treatment.  (I've been hoping someone who still has a uterus would say they haven't had nasty side effects from one of the hormonal treatments). There seem to be very different opinions about the amount of absolute benefits of each treatment for the individual woman.  Some say it's tremendously helpful for a large group of women in total, if you add up the benefit for the large group, not individual by individual. 

I am no expert about radiotherapy--I just have my own concerns about it based on the huge amount of data out there that I've found. Brachytherapy could be much safer than traditional RT.

Thanks, Shayne.

I am going to ask about maybe doing that.  Since they are the experts and I am not, sometimes I feel like I am do not know exactly what I should be asking. Would they allow me to have treatment that way?  If not, should I seek another opinion or find out if another facility would offer brachytherapy?  I mentioned the possibility of maybe getting prone radiation and the doctor didn't answer.  One of the doctors wants me to participate in a clinical trial (and has a very strong personal interest in that type of breast cancer), but I am concerned about the known risks of the drug.  I would like to help, but not if it might potentially cause a serious health problem for me, and there seems to be the possibility that it could cause a serious problem that may be temporary or lasting.  The clinical trial requires traditional radiation therapy. If I decline to participate, will I be treated differently? I wonder about this.

Thanks, Shayne

Hope my post really did help, Oldmom

Thank you Sandie and purple32. 

I have heard of Dr. Lagios. I think it's great that he gives consultations and second opinions.  (Sandie, glad to hear that he determined that you didn't need radiation or Tamoxifen.)

I was half-tempted to just try to go ask the pathologist to explain to me what each detail of the final pathology report means...and ask to actually see the cells under a microscope to see what DCIS really looks like, and ask his opinion of the real risk, but that wouldn't happen in the real world, would it?  There does seem to be disagreement among the pathologists about what is high risk and what isn't.   There seems to be a lot of disagreement among doctors about what DCIS actually is, a cancer, a precancer, a marker for possible invasive cancer...and a lot of confusion about what to do.

I haven't gotten information about the real risk of recurrence in my particular case. Oncotype DX test results might give me the opportunity to have an idea of what the risk might be.  

I also don't fully understand the absolute risks/benefits versus the relative risk/benefits of different treatments, but know there is a huge difference between the two.

A 50% reduction in risk with Tamoxifen was quoted to me.  What wasn't quoted is that is the amount of benefits for all women in studies, not individual women, case by case.  From what I've been reading and studying, it might only give me a 2-4% benefit with its accompanying risks.  How does someone weigh the possible benefits of radiation treatments to prevent recurrence against the possible late effects like the potential lung and heart damage, possible secondary cancers that can occur within five to ten years and can be very aggressive after radiation, and even the possibility of myelodysplastic syndrome like Robin Roberts has been diagnosed with? Is it worth it in the long run? Is it like a coin toss?  Heads you do it, tails you don't.  I'm grateful for your advice and will try the options.

Because the doctors are experts and I am not, I feel like I am at a real disadvantage when talking with them.  The RO said "whole breast radiation", the traditional kind.  I am going to try to find out if there are any technically safer options available offered by that facility.  If I have to be this worried and am not offered options, than I might just take my chances and not do it.

Oldmom, I told a nurse I was considering foregoing radiation treatments and that in event that DCIS came back or came back as an invasive cancer I would have the option of radiation then.  She told me that I couldn't simply hold off on radiation to use it in the future if I needed it.  I didn't tell her that I have big concerns about the long-term effects of radiation.   Another medical person told me that I should just go back to the surgeon and get a mastectomy and "not have sleepless nights worrying about it".  I don't think it would be that simple. Maybe for her it's that simple.  Another one told me that radiation was, of course, risky, but that is the price you have to pay for having DCIS and we all know it.  A doctor told me not to worry about the risks of Tamoxifen--that if I got uterine cancer, just get the uterus removed, and she shrugged.  The thing is, I really am hoping there are ways to try to avoid those outcomes.  In my opinion, all the choices are tough choices.  If I can find out what the real risk of recurrence is, then I can make an informed decision.  Thanks so much to all of you for the advice!

Shayne,

I called to ask if they do prone radiation there.  The secretary seemed to have never heard of it.  I explained what prone radiation is. She said they don't do that there.  I made an appointment to try to find out what the real future risks with or without treatments are for someone who has had this type of DCIS removed, not for 1000 women who have DCIS and/or invasive cancer.

Stem Cells For Dummies

Lawrence S. B Goldstein, PhD

Director, University of California, San Diego Stem Cell Initiative

Meg Schneider

Award Winning Journalist

"The traditional treatments for cancer are surgery to remove as many cancer cells as possible, and chemotherapy and radiation to zap any cancer cells that remain in the body. But if cancer stem cells have the same kinds of defenses that normal cells do, they may be able to pump out chemicals designed to kill them and send out enzymes to get rid of the ROS (reactive oxygen species) generated by radiation treatments."

"As it turns out, that may be exactly what happens in cancer stem cells-or at least in some kinds of them. Some researchers have discovered evidence that the cancer stem cells in some cancers, including breast cancer, repair DNA damage more readily after radiation treatment than other types of cancer cells do. Researchers have recorded similar results in tests on human head and neck cancers, too."

"These stem cell defense mechanisms may explain why traditional cancer therapies can knock down cancer but often can't knock it out. The therapies that are most effective at killing nonstem cancer cells apparently deal only glancing blows-if that-to cancer stem cells. It's like the archetypical alien invasion movie, where mankind's most powerful weapons can't penetrate the mother ship's force field."