Considering opting out of radiation

Marijen, for small IDC the standard of followup care post-op and post-adjuvant tx is mammos (ultrasounds or MRIs for dense breasts) @ 6mos-1 yr. Tumor markers and other blood tests are unreliable, since there’s no intermediate stage between no mets and mets. And nuclear bone scans and lung CTs increase the amt. of radiation exposure; and brain MRIs are expensive. Absent symptoms that indicate possible mets there’s no reason to do these extra tests.

As to why there are no double-blind studies comparing conventional w/alternative tx for bc (as well as conventional tx vs. “watchful waiting” for DCIS) it’s due in large part to few if any doctors willing to commit their patients to what might well turn out to be a placebo, and few patients are willing to take a chance on doing nothing. The double-blind studies thus far tend to be established tx modalities vs. new cutting-edge therapies. The partial-breast-radiation trials being completed and compiled (in which my RO and hospital took part) involved only postmenopausal women over 55 with ER+/ER2- node negative tumors with clean margins and Oncotype scores of 17 or below. Those trials drastically lowered the risk of lung damage and the already very low (1%) risk of radiation-induced sarcomas. And the trial also looked at women older than 70 with similar nonaggressive tumor profiles and concluded that radiation offered no survival benefit over not irradiating (whether full-or-partial). It may well turn out that in those of us dx in our 60s and beyond with small. “clean” nonaggressive tumors, anti-estrogen therapy alone may prevent recurrence (and for those of us so far past menopause as to have extremely low estrogen levels anyway, just cutting the tumor out would be sufficient. But who wants to be the guinea pig and possibly be among those who get recurrence (however small that group may be)? And how many doctors want that on their consciences?

Of course, until the substances used in alternative therapies are regulated as to purity and potency, double-blind studies would be dangerous and unreliable even if there were sufficient docs and patients willing to participate. And don’t hold your breath waiting for the day when herbs and oils are reliably and uniformly regulated---so long as the libertarians tend to dominate both the supplement industry and the legislators who would be promulgating said regs (not to mention their sources of campaign $), it’ll still be the honor system at best and the Wild West at worst.

Marijen..He checks Vitamin D, CBC and Metabolic Profile, is it for cancer or because I take Tamoxifen, I'll ask him why he draws blood every 3 months. I think he's being cautious because I refused Chemo with a high Onco DX score, and I'm PR-.

Loral were the MRI and CT scan done three years ago? I had them too plus a petscan to check for mets upon original dx in April. My dx is IIIA because it has spread to lymph nodes and the size of the nodes. The blood tests you have every three months are the basics to show your doctor if there have been any changes. Those blood tests don't find cancer. Do you get a copy of the tests? Do you know if anything is out of range? Vit D is important for bones. There is no other reason he checks your blood every three months. I was told I had to wait for symptoms of metastatic cancer. But by then I will already have it in distant places. Because I do have invasive cancer, it could pop up in my chest somewhere in my breasts and nodes first. And then there's the genetic tests. I haven't had those either.

Thank you BeachLife! I take 4000 units per day. And I've read that getting up to 70 is good. I do feel better since I started taking it 3 years ago. Iodine I'm not sure about - is that related to hypothyroidism? I started a healthy diet and exercise nearly four years ago and now I get cancer!

Seachain, good to know. Yes, concern and thoroughness are what is missing with my MO. I need to keep looking for someone who cares. I didn't even know we had finished our appointment last time I saw her. Her nurse came back with instructions to see the surgeon. I don't believe she looks at my chart until I'm sitting in front of her. She's always late too. I need someone on my side. (grumble).

I just wanted to say a quick thanks to everybody who has posted on this thread, but especially AlaskaGal and Iloveanimals. I am caught up in this machine that is BC "care" and feel like I have been ground up under someone's heel. I am starting radiation this Thursday, despite the fact that I have many serious reservations that I just can't seem to get anybody to address in a reasonable way. The decision is made and for my sanity I need to just find a way to look at it in a positive way. I'm just so grateful to see that many of you are having the same issues I'm having with treatment being based on lack of evidence, inconsistent numbers, physicians who don't listen and/or can't talk about anything that's not the normal standard of care. At least I'm not really alone in all of this!

I'm really struggling with the idea of having "cancer" with DCIS. On the one hand, the DCIS wasn't hurting me, or making me sick and wasn't going to kill me and that sure doesn't sound like cancer to me. On the other hand, if I have to undergo two surgeries, radiation and drugs (although I may say no to the Tamoxifen) then shouldn't I have the right to feel like a cancer survivor when I'm done? What IS making me sick is the "treatment" and how can that be right?

But when I talk like this, I (literally!) get told I need therapy and they don't want to waste their time with someone who isn't fully on board with the treatment plan.

Ugh!

I'm cheering for those of you that didn't let the machine take them over like me and just said no.

And if this comes back, I'm taking a very different approach for sure.

Wish me luck, please.

I'm really interested in this conversation. I was diagnosed with breast cancer in July. I had a mastectomy on Oct. 1 and had all 3 sentinel nodes test positive, so all nodes were taken with two more testing positive--but one of each was a micro-metastasis. I had four small tumors (largest was less than 1 cm), but spread far enough apart that the mastectomy was necessary. My oncotype score was 18, which made chemo statistically insignificant in long-term outcome, but I decided to go ahead with it and have had one administration so far. I am VERY concerned about lymphedema and the other lifetime risks associated with radiation therapy (left breast). I'm 48 years old. My cancer was ER/PR postitive and HER-2 negative and I will follow hormone therapy. Stage IIIA, T1, N2. I'd very much welcome any comments or advice. (I've requested a second consultation with my radiation oncologist, but wonder if I should seek a second opinion instead or in addition?) I think my main thought is, they have taken all my breast tissue and all my lymph nodes, I'm subjecting myself to questionably-necessary chemo, and my doctors keep telling me that the biggest piece of this is going to be the hormone therapy anyway, so is radiation really necessary, especially when there are risks associated with it?

sara208 that sounds tough and I understand why you'd be questioning. I actually have a friend who had a similar prognosis as you, got radiation, and now has chronic heart inflammation that has to be treated intensively with steroids a year plus out that she has been unable to wean herself off of yet. I think this is due to the interaction between chemo and radiation, and in her case, improper diagnosis of the problem by her docs, - something to look out for.

My experience is that you can go back to the radiation oncologist until you turn blue and no matter how smart and well-intentioned that person is, the only tool they know how to use is radiation so you're going to get the case for doing it. If you want information about not doing it, you don't have too many options unless you have access to a good alternative MD or naturopath. Ultimately though, I think we must believe that we have within ourselves the wisdom to know whether a particular treatment is helpful for us. The body knows. You just have to get yourself in a place where you can hear yourself and you'll know. If you are religious maybe you think of it as God talking. I'm into biology, and I've noticed that animals tend to know how to heal themselves innately - watch your dog eat grass when it needs to barf!

If it were me, I wouldn't do it. Without your breast left to absorb the radiation, it's going straight to the vital organs you need to live, and chemo will take away your body's natural ability to deal with the burns and inflammation inflicted by the radiation. But don't follow my advice! Follow your intuition. The body knows.

Not sure if everyone saw this article at Time magazine last month...

http://time.com/4057310/breast-cancer-overtreatmen...

Why Doctors Are Rethinking Breast-Cancer Treatment

• Siobhan O'Connor @siobhannyc

Oct. 1, 2015

Too much chemo. Too much radiation. And way too many mastectomies

"What if I decide to just do nothing?"

It was kind of a taunt, Desiree Basila admits. Not the sort of thing that usually comes out of the mouth of a woman who's just been diagnosed with breast cancer. For 20 minutes she'd been grilling her breast surgeon. "Just one more question," she kept saying, and her surgeon appeared to her to be growing weary. She was trying to figure out what to do about her ductal carcinoma in situ (DCIS), also known as Stage 0 breast cancer, and she was already on her second opinion. The first surgeon had slapped a photograph of her right breast onto a viewer, pointed to a spot about 5 cm long and 2.5 cm wide and told her there was a slot open the following week for a mastectomy.

Basila's first reaction to her diagnosis was an animal-instinct panic that she registered as "10,000 bricks" crushing into her chest when she woke up in the morning. After that, Basila, who is now 60 and teaches high school science in San Francisco, did a little research. She learned that there were a lot of unknowns about the progression of DCIS, which is noninvasive–it's confined to the milk ducts–and is the earliest stage of breast cancer. She also learned there was some disagreement in the field about how to treat it.

She knew she wasn't ready to have one or both of her breasts cut off. And she wasn't sure she wanted a lumpectomy either. That's why when Dr. Shelley Hwang, then a surgeon at the University of California, San Francisco (UCSF), recommended a lumpectomy, Basila grew frustrated. She was coat in hand and ready to walk out the door when she issued that half taunt. And when she did, Hwang said this: "Well, some people are electing to do that."

Basila sat back down, and as their meeting reached the hour mark, she made a choice that humans are practically hardwired not to make in the face of a cancer diagnosis: she decided to do nothing.

Well, not nothing, exactly. She would start taking a drug called tamoxifen that blocks estrogen, which can fuel tumor growth, and she would enroll in a clinical trial involving active surveillance: twice-a-year visits in which she would get mammograms alternating with MRIs. As long as there were no worrisome changes, Basila would be spared the standard arsenal in breast-cancer treatment: surgery, radiation and chemotherapy.

That conversation took place eight years ago. And if it sounds radical today, it was all but heresy back then. This was before the U.S. Preventive Services Task Force said in 2009 that women should start mammograms at 50, not the previous guideline of 40, because there's insufficient evidence that earlier screening does more good than harm. Before research showed that for some women with Stages 1 and 2 breast cancer, the absolute survival benefit from preventive double mastectomies is less than 1% after 20 years. Before the paper in August showing that no matter how a woman is treated for DCIS, the mortality risk is 3%–similar to the average for the general population. And before the news that some women with early-stage breast cancer don't benefit from chemo and can skip it.

In other words, that conversation took place before doctors and patients were faced with the evidence that in the U.S., many women with breast cancer are being massively overtreated. Thanks to advances in genomic testing and deeper insights into the biology of different kinds of breast cancer, doctors are learning that the one-size-fits-all approach isn't working. They're also learning that every woman brings with her a unique profile of biological risk–as well as a unique appetite for risk. That means that while some women require urgent and aggressive treatment, there are many who can slow down and take a more sparing approach.

Now those at the vanguard of breast-cancer treatment are calling for a major shift in the way doctors treat–and talk about–the disease, from the first few millimeters of suspicious-looking cells in milk ducts to the invasive masses found outside of them. That's making the tough conversations between a woman and her cancer doctor ever harder, but it also stands to make them more fruitful.

Because as good as we have gotten at finding breast cancer–and we've gotten very good–all this new data suggests there may be better ways to treat some breast cancers, particularly those at the early stages. Evidence is mounting that aggressive treatments, designed in earnest to save women's lives, can have unforeseen and sometimes devastating consequences....

(It goes on, I just posted the beginning)

Here you go, Marijen:

http://breast-cancer.oncotypedx.com/en-US/Patient-...

It doesn’t say “radiation” specifically, but does mention that the score will influence the treatment considered most beneficial and least risky for you. The one for IDC has a lower score range (0-17 low, 18-29 intermediate, 30+ higher risk of recurrence/likelihood of chemo effectiveness) than the DCIS one, which I understand goes all the way up into the 60s, 70s and beyond.

This is an interesting topic. There is now a lot of talk of about the over-treatment of breast cancer, especially DCIS.

Sara208, I think AlaskaGal's friend also had chemo which has been known to cause heart damage and coupled with rads, it may be a higher risk perhaps. I want to say up front that I think ALL people with this disease should do what they feel comfortable with and what they can personally live with. That being said, there are ways to keep the heart and lungs out of the field (although of course people say there can be some scatter rays) by doing rads in the "prone position" or just mapping out the trajectory so it misses.

I did have radiation so my opinion is my own. I had a couple of opinions and decided that I wanted to do what I could to minimize risk of recurrence so that was my choice. I did try to find a way to avoid rads at first due to it being my left breast and the heart risk I was told about. After meeting with the RO team AND the dosimitrist on my team, I was assured that in this day and time, they are doing a great job keeping lungs/heart out of the field.

I did have PARTIAL breast rads in a clinical trial, 2x a day for only 5 days, which means less chance for scatter and less rads period so this could be why I was comfortable with my choice though. Not everyone has this luxury so feel blessed that I did.

This is such a hard disease in terms of treatment, even for (and some say especially for) DCIS, the earliest of the early stages because the choices boggle the mind where as later stages are more cut and dried with choice. Ugh...damned if you do and if you don't.

Edited to add that I echo AlaskaGal's excellent sentiment. YOU ARE INDEED IN THE DRIVERS SEAT!

When I read that article, I thought back to 2009, when the stereotactic biopsy had shown DCIS in my right breast. MRI had shown an area of suspicion of about 5 cm and another area in my left breast. I decided to go for bilateral mastectomy. The pathology of the mastectomy showed that in the left breast (the prophilactic one) things were getting ready to turn ugly, while in the right breast, I had a little bit of DCIS and LCIS, but the rest was multifocal mixed tumor, a lot of small IDC and invasive cribriform in a "sea" of ILC. And a 3 mm macrometastasis in the sentinel node. So from Stage 0 I went to Stage 2b.

I'd probably not be alive today if I'd have taken my decision based on the biopsy.

Thanks, KBee, I do appreciate your reality check. I so desperately want to avoid radiation but I don't want to jeopardize my health or ultimate outcome. I will be meeting again with my radiation oncologist and may seek a second opinion before I make my decision. Thanks for weighing in.

Local recurrence is not just a pain in the ass, it is much more than that. 2 surgeries (4 actually... They did 3 in 1) and maybe more to come, 5 months of chemo, 6 weeks of radiation, and with any local recurrence, there is a high likelihood of systemic disease with the recurrence or soon thereafter. My risk of systemic disease in the next few years went from less than 10% to more than 50%. My pathology changed this time and was much more aggressive. So it may not come back just as a lazy little local recurrence you can just get cut out. Cells left behind can and often do mutate into more aggressive cancers.

Radiation definitely carries risks. I burned severely, after skating through chemo with few problems. It was horrible. I did work through it (as I did chemo), but it was very hard. I know that it carries the risk of long term lung issues and secondary cancers, but I did not have a choice this time. If I live long enough to have one of those occur, I'll just be happy for the years. In the meantime, my burns have healed, I have run 2 half marathons, and I am back to work at a very physical job.

Factors in this decision are different for everyone though..... size of tumor, number of tumors, size of breasts, your age, your health, lymph node status, etc. whether you have kids at home may weigh in your decision making too.

Sara, Second opinions are good, as are 3rd, 4th, etc. there are different approaches and different plans for rads. Find an RO you are comfortable with, and a plan you are comfortable with, which may or may not include rads. Good luck. These decisions suck!

There are no easy decisions, but don't downplay the seriousness of any recurrence, local or systemic. Cancer is hard the first time. It is exponentially harder the second. Hopefully the measures everyone has taken will kick the cancer to the curb for good