Refusing Radiation?
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Jane ( slave to two cats here ) 0/1 means they tested one node and it was negative, 5/19 means five out of nineteen nodes had cancer cells. My RO said a recurrence on a radiated breast means mastectomy, so , for me at least, holding radiation out for a possible recurrence made sense. Of course, if it spreads, all bets are off. My family is a veritable cancer factory and actually everyone's done fairly well so that helped with my decision.
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My surgeon also told me that in the event of a recurrence to the same breast it would almost certainly mean a mastectomy.
I, too, am struggling with the decision over whether to forgo radiation or not. If someone could pretty much honestly assure me that the skin damage would be minimal and temporary and that I wouldn't end up with a smaller, harder breast and that there wouldn't be lingering pains for years to come I would go with radiation. However, the ROs talk so blithely about a "sunburn" and a "perkier" breast. And that's as far as they go. No one will honestly discuss risk reduction except in the most general terms and ROs are among the least honest regarding side-effects, in my experience.
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hello everyone, I had my first visit with my RO last week, he is recommending 33 treatments to chest wall, supra clavicular and axillary node areas. I has neoadjuvant chemo with PCR as a result. Also had a mastectomy with ALND. My PET scan showed two postive nodes preop. RO states he believes in treating according to the preop diagnosis. He did acknowledge that the second school of thought is to treat according to pathological stage after chemo. I've read study after study regarding reoccurrence after Pcr, they all say recurrence rate is lower after getting Pcr. I'm 90% sure I'm going to refuse RaDs. I'm going to talk with MO next week and get his input again.
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Rose, having had ALND your risk of lymphedema would definitely increase with radiation. I'm not trying to sway you in one direction or another but please DO have a tough conversation with your RO (and other MDs) about that issue.
My BS and I are dealing with the issue of treating to the pre or post neoadjuvant dx. In the case of neoadjuvant endocrine therapy there's not much to work with in terms of studies one way or the other. My RO wants to treat to the original situation (throw the book at it, as yours proposes) and I'm not comfortable with that. My BS would support a less-intensive approach but the RO is a real stick in the mud and I don't have many other options due to my insurance.
I wish you well with your research and decision making. I know it is really tough.
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Jane,
My diagnosis is very similar to yours. I went ahead with chemo, but completely refused radiation. Of course that was just in the beginning of this year so I can't offer any long term results...
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I thought I'd chime in on the "harder perkier" issue. I am now about a month and a half out from rads. My left breast at this moment is definitely harder and perkier than it was. I should note that it was always a teeny bit larger & saggier than my right breast. The lumpectomy + rads has made my breasts match just a bit more than they used to. I feel good about that. Now 1.5 months later I will say that the area of my breast where I had my boosts remains discolored. It is sort of a brownish color (but not like the color of a suntan). The mark is an oval that is exactly where the sharpie lines were drawn for the boosts. I am not crazy about that but it is not noticeable most of the time.
My radiation oncologist told me that it was possible radiation was overkill for me. He didn't sell it. He just said that there is no way of knowing if you ARE in the 2 in 3 that don't need it or in the 1 in 3 that really do. I decided to go for it.
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Hopeful, I get the refusing treatment because of the future risks, but I am going with the throw everything at it approach. I am Stage IV and triple negative so what the heck at this point. The skin damage while annoying, could have been much worse. I was scripted to have 28 rads, but the RO added 5 boosts because the skin held up so well. While I did have damage to repair, I think in my case it was worth it. If I felt I could have refused I would have. But I need every weapon I can get to add QOL to my prognosis.
I know it is impossible to guess who has more issues with rads, I feel really well and just have some peeling skin left. The fatigue was rough for me. But I had gone into rads following chemo and surgery so I was already dragging the bottom of the barrel. You may do well. It is such a shotgun approach for everyone. I wish you well. Cheryl
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Professor50 said: "My radiation oncologist told me that it was possible radiation was overkill for me. He didn't sell it. .."
It's hard to imagine a doctor being so frank. Wow.
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Beachbum, I really understand your thinking; I'd probably feel the same way, too, in your position. And frankly, I'm as scared as anyone of a recurrence - maybe more aware of that possibility than many. It also seems that there's no rhyme or reason to who recurs.
That's part of my huge struggle with radiation; no one seems able to quantify the probably benefit, not to be honest about the downsides. I feel as though it's a huge roll of the dice.
It does not help that my insurer is really limiting my options for treatment facilities and ROs, either.
There is a newer approach that's in a handlful of clinical trials that uses radio frequency ablation rather than radiation. It's had good results so far, although it's not advised for node-positive cases. The damage, expense, investment in equipment, etc., are all SO much less even than SAVI or IORT. My hope is that within a few years it will put a huge dent in the incomes of ROs and offer women a hugely better option. Not surprisingly, the idea originated with a female breast surgeon, the same one who devised the alternative to ALND. I just wish she'd started in on this about a decade ago!
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Hopefull, at your stage and grade if you hold on the rads you can always pull that trigger later. I have nothing in reserve for right side rads. But given my prognosis, I doubt that I will be here to look back and decide if I made the right decision to do the rads now. But since I do not have a crystal ball or magic potions, I can only move forward with the information I have today. I guess if I am given the opportunity to look back it will mean that I am still here and made the right decision. WTH?
Roll the dice, you bet! It's all I got, cause there AIN'T NO 5! -
I certainly hope (and pray) that you will have plenty of opportunities to look back at this decision, Beachbum, and also that you'll just be too busy living life and giving the world what for to do so very often.
I do kind of hate to do 33 treatments (including supraclavicular nodes) knowing that IF it recurs in the left the damage to my skin will make a mastectomy with reconstruction that much less likely to come out well. I wish there were an option to do just a third or half a course of treatment.
For now, I think I'm going to wait until we see what the surgical pathology says. If the node is clear, if my PEPI score is ideal, we'll see if that opens up other options.
Thanks for your support and insight, BB. I always look forward to your take on this weird world we've been abducted into.
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Hopeful, thank you! I love your take on our "abduction" into the world of weird. I told my rads techs on the last day that my name was Jane Doe and I joined the PPP. Patient Protection Program! I wish there was one, I would join. But I did wear my jeweled tiara that day because it has Super Powers.
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Hi Bailey,
I had stage III cancer and I refused radiation. They will try to convince you very strongly, but you must really consider your options. I could not handle the idea of possibly getting lymphadema since I am a yoga teacher, and besides it's horrible. My naturalpath suggested that after my scans came back good that I didn't need it. So glad. Two of my breast cancer girlfriends that had lesser cancers had radiation and both ended up with a breast infection - one a year later and one just months later. I don't believe that radiation is good for us at all. There are many alternatives I feel, but this is just my opinion. Don't cry. Be brave and strong my dear. This is your choice. No rush, don't let them rush you. (((((Hugs)))))))) Karen
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hopeful, what is a PEPI score?
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Rose, it's an acronym for Preoperative Endocrine Prognostic Index, and is used to predict the recurrence risk for those of us who had neoadjuvant endocrine therapy.
Here are a couple of links if you're interested: http://www.siteman.wustl.edu/ContentPage.aspx?id=3186 and http://www.breastcancer.org/research-news/20080924
It doesn't apply to the majority of women on this board because most American women aren't offered the option of neoadjuvant endocrine therapy as I was. However, for me would be just about as important as my Oncotype DX score, maybe even more so.
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Thankyou, very interesting
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You're welcome, Rose. I'm happy to share my little bits of knowledge, just as you and so many others have done here.
I will say that for hormonally positive women I think neoad. endocrine treatment is the way to go. It's so helpful to know how/if one's own body and tumor respond, which is something most don't have confirmation of.
(In my case, it's also shrunk my malignant tumor, which now looks & feels clinically normal. If it's clean at surgery that will give me a much brighter future than otherwise. My original surgeon just wanted to do ALND (with its attendant risk of LE) and insisted there was no alternative. I am SO glad I listened to my instincts and walked away from her treatment plan.)
I should have said, above, malignant NODE, rather than tumor. Both have shrunk but it's the status of the node that is really critical - and impressive.
I did have an additional biopsy after 5 weeks that showed a huge drop in the proliferation rate. That was encouraging enough that I felt MORE comfortable waiting for surgery than otherwise.
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Very interesting, Hopeful. Now that I'm on arimidex, I'd love to know how effective (or ineffective) it is on my tumor. On the other hand, at diagnosis, I just wanted that dang thing out and waiting would have driven me totally nuts. For me, I'd love a laboratory version of the test (right now, of course) so i could have my immediate(ish) gratification and also know how much I should value that danged AI.
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Meow, Some doctors are doing the onco-type test now. It shows through your DNA if you have a low, medium, or high chance of reoccurence. My BS told me if mine was low, no radiation, if medium pills and no rads. If high radiation and pill.
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I just met my MO for the first time this past Monday. I had a lumpectomy about three weeks ago. Tumor<1.5 cm, 5 lymph nodes totally negative, ER/PR+, HER2 negative. Hope I got that right, don't have the pathology report right in front of me, and this language is all new. I'm 67, postmenopausal for 16 years, no HRT, and I was only on birth control pills for 13 years about 30 years ago.
The radiologist I saw (before I met the MO) said the MO would probably order the oncotype test, but when I asked her, she said my numbers were so low, there was no need to. That it wouldn't give any further information.
The MO still wants me to have radiation AND 5 years of Arimidex. I can kind of see the radiation. but not the Arimidex-- seems like too much.
(Adding all the cancer terms to my kindle dictionary...blech.)
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Suzanne - I responded on the other thread regarding this - the Oncotype Dx test for DCIS and the one for invasive cancer are two different tests - the DCIS test helps with treatment decisions based on recurrence risk, the one for invasive determines how much chemo will help when added to hormonal therapy.jane - the things your MO is recommending are standard of care after lumpectomy for an ER+ mass. The rads treat the local area of surgery and wound tract for errant cells left behind in the breast, Arimidex treats systemically to prevent distant metastasis and local recurrence. The rationale, even when risk is low, is that some percentage of people will have a local or distant recurrence - and we don't know who will, so these are the measures that help prevent that. Hormonal therapy is also something you can try, see how it goes. If it is a problem you can stop and discuss alternatives with your MO.
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About refusing radiation in general as well as replying to Karen (whollyhealing), I'm curious if you were told that radiation can increase risk of lymphedema. I have read articles that explain it actually lowers the risk of edema. Mainly I just wanted to wave hello, as I also have decided against radiation.
I just had a tumor board do a whole second opinion for me with six doctors. (Anyone in the SF Bay area should know about SecondOpinion.org -- they do free second opinions which are unbiased, at least in the sense that they are not the treating physicians -- great organization). What was interesting and not that surprising is they had a radiation oncologist come in who was exactly like my own radiation oncologist. Honestly, they could have been clones. They know each other and are about the same age. It was like a mutual admiration club. So her opinion was delivered in the same rather frantic tone, laying out the risks and benefits, and how I am a perfect patient for radiation according to her assessment of my situation. But her assessment was not spot-on. She slightly exaggerated my data, which made it sound more scary for me to refuse radiation. My own rad oncologist did exactly the same thing and spoke as if there was absolutely no question, this had to be done. Enter the older oncologist, a man who has broader experience, and who told me something I did not already know: He said that because of my very high receptors -- ER and PR 95% -- that is superb -- my biggest arsenal was the hormone therapy. This is not tamoxifen, it will be an "aromatase inhibitor," and it's possible I won't have any side effects. (Possible. We'll see.) I am fine taking the hormone therapy, certainly starting it, and seeing how it actually affects the quality of my life.
But the important thing was to reach the point I just reached: I am refusing radiation. When I have to make a very difficult decision, I have a technique. I go ahead and "cross the bridge," as in, I make the decision firmly in one direction. I go there as having made the decision and I sit with it. I pay very close attention to my internal responses. When I considered this morning, having done some more reading, that I would indeed have to go forward with radiation, I felt my insides twist and groan. I felt a dark shadow spreading out into the future. (Of course I cannot separate my emotional investment from any other reality here, but I do place a lot of stock in my instincts.) After a while, I started again, and decided no, I am not doing it. I am refusing radiation. The full-body sense I got with that decision was complete relaxation. I sat back in my chair. I felt a flood of relief. My vision seemed sharper. I will continue to sit with this decision for the next month, going about my life with the decision made, and pay attention to what comes up.
The worst potential effect for me is heart damage. I do have lots of family history of heart problems and my own fairly benign issues. I want to run marathons, thank you very much, as a 60+ year old, going into my future as the athlete I've always wanted to be. I know they can do many things to prevent this effect, but this time (as opposed to all the right side radiation I got 15 years ago), it is on the left side.
I am well versed in medicine and I know that this attitude is horrifying to doctors -- that I take my instinctive response so seriously and allow it to guide me -- but I also know that there is that piece which doctors cannot quantify. In my case, with a tumor that was completely removed, a mastectomy, an expander implant waiting for reconstruction, and one node of three with a very small focus of cells, and about to complete my chemotherapy, I feel that I do indeed have a choice.
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I really resisted radiation, even though I knew that even with a mastectomy it was a given, due to the location of the tumor very, very close to the chest wall.
In the end I had radiation to both the supraclavicular and axillary nodes, as well as the remainder of the breast and a boost. Although I had many qualms about it, there is sufficient data to confirm the efficacy of that treatment plan for my situation that I accepted it.
I was fortunate in that, despite a left-sided tumor, my heart was not in the treatment field. Almost 2 months out from final treatment, I do have a bit of radiation pneumonitis which is expected to clear up well. Once I knew my heart was not in the field it was much easier to proceed.
My skin did GREAT - much to my relief. There's some fibrosis, which my PT is working on and we're seeing progress. My breast is a bit more rubbery in feel than the other but doesn't really look any different.
While the radiation period was tough physically and mentally, I am comfortable with my decision. And, frankly, once I made the decision to schedule my simulation I was o.k. with moving forward. I know everyone's experience differs but radiation does not have to be as awful as it sounds. My RO assured me time and again that I would do well with radiation - and she was right. For anyone who's on the fence about it, please do have a very open, frank and challenging discussion with your RO - and get a 2nd or 3rd opinion.
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Hi, I just finished 25 sessions. I was very worried about all of these issues. I fnished two weeks ago and my boob is starting to look normalish. I had a lumpectomy underneath my right nipple. Doc moved my nipple up in surgery but its still smaller than my left. Skin handled it better than i thought doc was impressed. Very little peeling no blistering. Energy is back. Everybody as you know handles it differently. Your decision to not have rads at your age I get that. Same as me refusing hormone therapy..its a crap shoot. Docs try and try hard to talk you into these treatments but there are no guarantees which is what I told my doc. In the end go with your gut. Be well...
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SusanB thank you for sharing. I did not refuse radiation but I did refuse Chemo. Like you I got a second opinion at a Cancer Hospital in a neighboring city. I cannot express the value of a second opinion with an organization/hospital that is not invested in your care. Even if they tell you the same thing that your treating docs say it will give you such a piece of mind.
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Brutersmom...I agree..I did not get a second opinion because everything came at me so fast... did't really know very much and now how I wished I had taken the time to get a second opinion.
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I absolutely agree on the importance of seeking 2nd (and 3rd, if needed) opinions AT A DIFFERENT INSTITUTION. Your insurance should cover these (check first) and there IS time to do so before proceeding.
I did for each phase of treatment and shudder to think of the outcome if I hadn't. At the very least it gave me another perspective (on radiation) and increased my confidence in the treatment proposed by my first opinion. In the case of both my surgeon and my oncologist the 2nd/3rd opinions were real game changers - I consider everyone who came before that to be close calls!
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I haven't posted for awhile but this site definitely resonated with me. I had a pCR after neoadjuvant chemo (completed 5/19/15) & a BMX 6/29 with reconstruction. I completed chemo in my home state where we live but had surgery in the Wash, DC area as my hsb was/ & still is working there on a temporary job. It was definitely very helpful to have the 2nd opinion from the RO in the DC area. He also knows the RO in my home state of AZ so it's a small worldI
I expressed my issues with radiation tx to both ROs - which included my concerns about long term side effects such as a major increase in risk of CAD & heart attacks several years down the road. Although radiation beams are aimed very precisely at the target areas, they don't stop at the target & there is no way to prevent the beam from radiating other areas of the chest, including lungs & heart & that was my big concern. If I hadn't had a pCR I would have agreed to radiation. The 1st RO told me he'd offer radiation even if I had a pCR, the 2nd RO (in DC), said he'd just attended a conference at Harvard about that very subject & recommended observation only without radiation since I'd had a pCR. I already had multiple conversations about this with other MDs & surgeons & they agreed about the long term risks involved so I'd already decided to not have radiation if I had a complete response.
In my experience, the ROs really don't talk much about the long term risks unless you bring it up, so it's a good ideas to a ask the questions & express your concerns.
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Dear Hopeful, I have IDC and Axillary positive node, with surgery in two weeks. Then radiation but.....I really don't want radiation.
Thank you.
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Dear Hopeful, I am wondering about a second opinion but I am quite happy with my surgeon, surgery in two weeks. How was a second opinion a game changer for you if you stayed with the first doctor's plan. Please help, I'm running out of time.
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