Considering opting out of radiation
Comments
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My MO and I had both wanted to do chemo because of my age and family history. I was stage 1C; my tumor was 1.9 cm. They did not do the oncotype until later, when deciding to do 4 or 6 rounds of TC. I requested it since 4 is what most oncologists do with TC and my (former) MO had me scheduled for 6 with no reason for the extra 2, other than it was the dose that had been used in a clinical trial he'd had some patients in. Since it was low, he stopped at 4 rounds; if it was high, we would have done 6. The studies that are ongoing now to validate the oncotype over time use 10 as the "low" number..... which is really confusing since I think it muddies the water of what the "low" number truly is. It also was initially primarily tested in post menopausal women, so there was some question about whether or not the data holds true for premenopausal women.
My mom went through BC back in 1992, had mastectomy, chemo, and is still alive today. My aunt had BC 2 years later, had surgery and went the holistic route and died of BC 2 years later, so I had decided from a young age how I would treat it if/when it happened to me. I also have a good friend who was treated a few years before me who had an oncotype of 14, skipped chemo, and had it come back in her brain 2 years later. The experiences of family and friends shaped my decisions on both surgery and chemo, and I chose what I felt was best for me. I did a lot of research on different holistic therapies, and mae the best choice for me in my circumstances. Everyone has to make the decision that's best for them based on their own experiences. Obviously in the meantime, I have met several people who have gone the traditional route and died and vice versa. Had I been 15 years older and not had kids, or if I'd had other health problems that the treatments might exacerbate, I might have just done the Tamoxifen. This time my oncotype was high. For me, I have no regrets on any aspect or decision in my treatment which is huge mentally. That's a key for everyone. Make the decision that's best for YOU. In the future, whether you have issues from recurrence and had opted out of some treatments, complications from treating aggressively, or live complication free and cancer free, be able to look back with no regrets or what ifs. If you can do that, you'll more easily be able to emotionally face whatever comes your way. It would be simpler if we had a crystal ball.
I have eaten organic foods for years, I exercise daily, and do not drink alcohol, soda, or smoke. I eat few processed foods. I read up on a lot of holistic practices and take supplements and such... And have for years.
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Hi all,
I never realized that almost 8 years later, after chemo, rads and after my lumpectomy that i could be suseptable to radiation side effects. I have been bothered by heart palpitations and racing beats since last April. I went to see a cardiologist at that time and he put me on a drug to regulate my heart beat. It was his intention to keep me on it just several months, but seeing as they are much better, but still have some everyday, hes keeping me on the medication. He explained to me that it is possible for people with rads to have problems with their heart around the 10 year mark. I am ticked off to say the least, but at the time it was my intent to fight this beast with everything available. All they ever said was rads can give you side effects down the road. They never said what that was.....
Im disapointed and angry because i dont know whats to come. I hate having my heart skip beats. Has everyone else experience anything getting near the 10 year mark? I wondered what was happening but didnt figure it was a sideeffect from so long ago. Grrrrrrr!!
Hugs to you all, Artsee
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Hello Artsee, I see what you're saying but it could be something else. It could be age related, you are 8 years older. I had the same thing a few years ago - palpitations and racing beats. I was sent for an echocardiogram and I have moderate aortic stenosis. It means my aortic valve has calcified a little which makes it less supple. It's a common development with age and the cure is valve replacement. However, like everything else there are new treatments coming down the pike and if mine doesn't progress rapidly I won't need open heart surgery. Last year the cardiologist gave me 5 years before surgery, this year he changed it to 10. I told the anesthesiologist this, he laughed and said it sounded like an auto warranty : ). Or it could be something else. AO effects the pumping action of the heart, symptoms are shortness of breath and for me a little edema which calls for diuretic. I haven't had rads so that was not a cause. I also asked about the calcification, how does it get there? Apparently it goes to places of injury or inflammation. Check it out? What I can't figure out is why my breast was inflamed.
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ArtSee It is tough to fight BC as none of the treatments is win win. I noticed that yours is even on the right side, imagine rads on the left side then. Serious S/E is often noted around 10 years after, which are what I have learned from doctors who are friends and family. CoQ10 could be a choice among others. All the best for your Thanksgiving (We in Canada are advanced in this as we had it in Oct.!)
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With BC you just never know.....Liz
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Hi Alaskagal and ChiSandy,
Sorry for the late reply. Just not functioning at my normal level right now.
ChiSandy -- I tried to get the Oncotype DX test and was talked out of it. Then I went and read the "for professionals" portion of the company's site (the "for consumers" section is a complete waste of time) and realized my oncologist was wrong wrong wrong with the info she used to talk me out of it. So, I called and asked for it again and after a little bit of a run-around, they agreed to order it. Then they slow-rolled me and didn't send the sample to the lab for a week and a half. Then it takes two weeks to run the test. Which basically put me into Xmas for getting treatment if the test supported it. I've got two young kids and wasn't willing to mess up Xmas. And if I wait until next year, it's another $3k out of my pocket because of insurance deductibles. I am SO mad that I didn't get the Oncotype DX DCIS test, because in my heart I still really believe that it would have supported my gut in saying no to radiation. But, life is what it is, and this is where I am. There are so many things that I say "if I had known then what I know now...." but you just have to do the best you can with the info you have.
Alaskagal - thank you for the support and telling me I can stop whenever. I tried to ask the RO "what happens if I only get half the treatment" and got another "well I don't want to be bothered with you if you're not on board" speech. No actual info on the implications of stopping treatment. Is it like antibiotics where you can create a superbug (supercancer?) if you stop? Still no idea. But I did annoy them enough that they cut my treatment down from 20 sessions to 15 sessions, deciding to skip the "boost." I'm thinking "ok, if you're skipping the boost simply because I ask too many questions, then how important can it really be? If it's not that important, then why propose it in the first place?"
And never mind the lectures you get about how important it is for you to follow your radiation EVERY DAY REGULARLY. Unless it's Thanksgiving weekend, in which case they want to take 4 days off. Uh, how does that make sense? If daily is such a big deal, then....
I did finally get the RO to say "well, you probably are borderline but if you skip radiation, then you really need to take Tamoxifen." It may sound crazy, but I'm more afraid of Tamoxifen than radiation. I think it's because one is three weeks and one is five years. That's probably not the most rational argument, but I feel like I'm not letting my kids down if I at least do one of the two.
It's all so jumbled.
So, I'm five treatments out of 15 done now. A little pink and a little sore, but manageable. Scared of side effects. Currently the one that has me wigged is brachial plexopathy. Especially because it seems like it doesn't manifest until months after treatment is done. So it's not like you can see the symptoms and stop treatment if there's a problem.
The plan is to finish radiation, then be done with my current provider. I'm going to take some time for the holidays and some time to heal and then put some effort into finding a new provider that will talk to me in a way that makes sense to me. I'm not going to start Tamoxifen right away for sure. Yes, I did get squashed like a bug in this process so far, but I'm feeling good about the prospects of getting back on track in the new year.
I'm so grateful to all of you for sharing your thoughts and experiences. This message board has been my lifeline for the past couple of months.
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Adot, just to clarify your RO's remarks on stopping rads: It is really important, if you begin at all, to complete your treatments. If you stop in the middle (like after the first few days), you have not thoroughly zapped any nasty cells still hanging around, but, more importantly, because each area of your body can tolerate only a specific amount of zpping, you cannot have rads to that area in the future.
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I second BrooksideVT - if you have started radiation, I would highly recommend finishing it. Just a humble opinion coming from a cell biologist.
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Hey all, I just want to note that some people do think it is acceptable to quit radiation before you do the full course, and that everyone should decide for themselves. Ultimately, it's your body and your choice. When I was making my decision about radiation I consulted with a naturopath who is a breast cancer specialist, and has published clinical research on breast cancer in partnership with traditional oncologists (i.e. not a flake!). Her feeling was that if I started the course, and just felt after receiving a few treatments that it really wasn't for me, there would be no harm in stopping treatments, and she stated this quite clearly. (I should add that she did not recommend that I avoid radiation, and felt it would be fine whatever I chose and that radiation wasn't the worst thing in the world!) Obviously the negatives are that you don't get the benefits of a full course, and you may still get some unwanted side effects of the radiation, so it's not an ideal path, but there are no specific dangers associated with quitting part way through, and no clinical problems as there might be with antibiotics etc., just to be clear. I do think it's good to point out that it would prevent you from doing a full course in the future, depending on how much you've done, and that's something to consider.
Ultimately, if quitting after a few treatments prevents you from getting debilitating side effects and/or regretting your treatment choices, you're better off in the long run.
Artsee thanks for noting that radiation side effects can come on 8-10 years later, this was the case with my mother. Feeling fine immediately after or in a few years does not mean that you won't have inflammation/scar tissue issues with heart or lungs much later. (My mom, incidentally, also got the condition where the heart skips beats and they didn't connect it to radiation at the time. And while I can see a number of factors contributing to that condition, I can imagine radiation wouldn't help the situation and could cause it in some cases. After all, radiation damages cells which cause inflammation, inflammation leads to the calcifications, etc.)
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AlaskaGal, what is OK is stopping after a few treatments, because you still have the option choosing rads at a later date, should you find yourself with local recurrence or new tumor. What is a big no-no is stopping in the middle because you have not treated the bad cells and no longer have the option of rads at a later time when its benefit might be quite a bit more clear. An RO can tell you exactly where the cutoff is, but it's pretty close, I believe.
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I would be interested in reading a published study that there is no harm in quitting radiation halfway through. To me, this is contrary to the way that radiation actually works, which is to eventually cause enough damage to cancerous cells to kill them. My surgeon (also not a flake) said that the worst thing is radiation at a non-therapeutic dose.
Of course, no one can make you do anything you don't want to do, including finishing radiation. I'm honestly curious.
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Good point Brookside, that's probably how I'd view it myself in terms of short and long term cut off. Once you've done a bunch, may as well finish. I think my original comment was in reference to someone who had just done the first few treatments and was really regretting it and feeling conflicted, so I had wanted to share what a trusted and experienced caregiver told me, since many of us do not have access to professional opinions outside of the mainstream medical establishment.
39andhip, this is pretty much my point of starting this whole thread - radiation is very harmful to humans and has unwanted side effects that can be seriously debilitating. In my mind, and I understand others absolutely may not agree, better to stop getting radiation once you've realized you don't need it (provided its early in your treatments) than to go in for 6 weeks (as they recommended for me) and get a treatment you don't want or need. The less radiation you get, the healthier you will be! I believe the person who asked the question had super early stage DCIS, and there's now a lot of controversy about whether radiation is overkill for an instance of breast cancer that may never progress and can be treated effectively through healthier means.
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Found at BCO Just an FYI ladies...
When radiation is NOT an option
Radiation is not an option for you if:
- you have already had radiation to that area of the body
- you have a connective tissue disease, such as scleroderma or vasculitis, which makes you extra-sensitive to the side effects of radiation
- you are pregnant
- you are not willing to commit to the daily schedule of radiation therapy, or distance makes it impossible
(Vasculitis is inflammation)
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AlaskaGal,, thanks much for starting this post. On 11/3/15 I had a lumpectomy, estrogen+, nodes were negative, margins were clear. I'll be 70 in 3 months, and I'm seriously considering skipping the radiation, but I'm thinking I'll take the aromatase inhibitor. I've seen one RO and one MO and will see a second set tomorrow. The first RO said that for age 70+ with a cancer with my characteristics that the chance of recurrence at 5 years is 1%with radiation and hormone pills and 4% with pills only. He said the decision was mine. He downplayed side-effects, but my tumor was on the left breast, and I don't believe the risks of radiation are worth it when the benefit is so small. However, I will receive the results of the Oncotype DX tomorrow, and if that reading is high, I may change my mind.
I wonder if stress might have played a part in my diagnosis. My husband of 43 years passed away from idiopathic pulmonary fibrosis on Sept. 6 after a lengthy and difficult illness. So I was under a lot of stress with his illness, and I'm under much stress now that I'm widowed and missing him terribly. But I'm exercising, meditating, playing golf, going to a counselor, keeping busy with activities, and trying to take good care of myself. Unless the Oncotype DX result is high, my gut feel tells me that skipping radiation is the right choice for me.
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Redhibiscus: I came across articles online re older women (70+）and Rad while doing my research before makig my Rad decision (very tough! BTW, I am in my 50s). If I remember/interpret right, there are still benefits, but just won't be as much as women who are yonger.
You have gone through so much stress, which can create a lot of bad hormones and free radicals that could harm your cells. I share your opinion re the stress part, and also believe it is a big part of me joining the BC family. I am learning to think differently, not to stress out over some of the things, and focus on getting better. Take care
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Thanks Redhibiscus, I'll need to dig out the studies again to get you exact references, but my recollection is that more progressive doctors are really backing off prescribing radiation to 65+ since statistical benefit is so tiny. To me it sounds like you are 100% on the right track, and doing all the things you need to do to address the conditions that resulted in the tumor. So many of us develop tumors after deaths of spouses or other major and prolonged trauma.
I don't know much about side effects of aromatase inhibitors, but I would do your research on those and consult with a good integrative MD or naturopath. I think all the things you're doing could very well give you a much larger statistical boost for recurrence, and I wish they would do the studies to prove that. As other people who have posted can attest, the pharmaceutical interventions so often create other conditions that require pharmaceuticals, they can be hard to trust.
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my first diagnosis was stage 4 metastatic and was told by radiation oncologist if I did not get radiation treatment i might as well call hospice. I felt rushed and pressured into it otherwise I would have done things differently. It negatively effected the quality of my life what i have left. Listen to your heart/gut it's usually right no matter what other people say.
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Hello. I am now in the process of trying to figure out if I want to go through radiation or not. Last week I met the RO for the first time. He wants me to do six weeks of radiation. I asked him a lot of questions and he seemed a bit bugged by that. It was a subtle thing because he wasn't unpleasant and he was gentle however he dismissed my concerns about long term risks associated with radiation, even after I had told him that there is a verystrong lung cancer occurrence in both my mother's and my father's families. I've just started Aridimex. I would greatly appreciate any input.
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WIth a grade 3 tumor, you’re probably at greater risk of recurrence from micromets if you don’t do rads than of lung disease if you do. (Usually, the lung problems that occur, if at all, are more like fibrosis or exacerbation of asthma or chronic bronchitis--not lung cancer). If you are concerned about scatter radiation or penetration to the lung, ask if you can get your treatments in a prone position, with the accelerator head positioned below the table (your breast would be poking through a large hole made for it) to minimize lung & heart exposure--especially if large-breasted. Not all centers can do this, but once your treatment plan has been scheduled your RO might be willing to have you treated at a center that can.
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Thank you, ChiSandy, for your reply. My sister had radiation for her breast cancer (she had the same as mine) and had a tough time of it: skin burns, her breast became hard and shrunk, she developed what she believed to be radiation related cataracts. Soooo...I'm feeling rather anxious about it
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ChiSandy, hello, again. Do most treatment facilities offer the option of having radiation administered in a prone position? Is it a new procedure?
Also, I'm wondering, do you know if there are any general guidelines as to how much time (weeks? months?) can safely go by between IDC surgery and the beginning of radiation? I'm worried that if I wait too long to go ahead with it then perhaps it won't be as effective. I'm still unsure if I want to do radiation. Many thanks!
Happy holidays to all of you!!
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Don't forget that a lot of people have chemo between surgery and radiation--my surgery-to-chemo gap was 6 weeks, then I didn't start radiation until about a month after chemo was done--about 4.5 months after surgery.
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Hi, KSusan. Thank you for your reply. I'm still waiting for my oncotype test result to see if I'll need chemo or not. I have stage 1, so chances (I think) are slim that I will. The idea of radiation scares me..
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Hi all,
What a fascinating thread....thank you all for your generous posts and info gathering. I have learned a lot today.
My dx was exactly 2 years ago. I will turn 60 this March. IDC 6 tumors largest was 1cm Stage 1 grade 2 er+ pt+(almost 100%) on both. her2- 11 onc score with out hormonals. Double mastectomy node neg. NO chemo, no rads, no AI'S.
Now I am one week out of having an excisional biopsy for a 3mm recurrence near the nipple. (In the original surgery I kept my nips, already had implants)
YAY! So my surgeon has alluded to the possibility of rads and wants me to take tamoxifen.
Not happy with either path of treatment.
Can't do AI'S because of osteo arthritis, and don't want to risk the side effects of the tamox because I have high blood pressure and who wants endometrial/uterine cancer along with the lady part problems. ARRRRRRRgh!
It is very frustrating.
anyway thnks again for helping with the research. I see mu surgeon on Monday and we will talk more about this...I'm sure she will give me the RO's and MO's numbers to set up appointments.....thought I'd be done with this....
oh well, it will be an interesting new year....
peace
Eve
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I'm 75 yrs.old just had a lumpectomy and developed an infection. On antibiotics since 25th of Dec. still painful, swelled, seeing Dr. tomorrow again. Also doubtful about radiation side effects, as I have Multiple Sclerosis, sooo tired of pain, Thinking of not doing anything else but get over infection, and trust I won't get my cancer back. It was dime size, negative lymph nodes, I was told by RO that if you get cancer this would be the kind to get.....anyone my age understanding my anxiety
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Dear Darlene, We notice that you have not received a response today. We are sure that others may experience similar questions and concerns. You may want to consider looking at some of the topics in the forum for those older than 60. There may be some topics there that might interest you and you may want to post there for some possible responses from those in your age bracket. Perhaps it is also a consideration to write down your concerns and questions and pose them to the Radiation Oncologist for further consideration. Keep us posted. The Mods
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https://www2.mdanderson.org/depts/oncolog/articles...
Darlene - maybe these links may provide some information for you.
http://www.everydayhealth.com/news/letting-go-radi...
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hi gals, after a local recurrence last year, I finished radiation March/April 2015 and now my chest and back ache all the time. I regret getting radiation! My reconstructed implant is high and tight and I'm not sure there's much to do about it beside harvesting other parts of my body to try and fix it. I have this (fantasy) of taking out my implant and throwing it across the room! It seems like it would give me such relief, like taking off a pair of tight jeans at the end of the day! Be gone!
Is anyone else having pain? Is anyone else having implant problems? Curious. Thanks!
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Does anyone get the idea radiation is a bad idea before they get to the end or do the side affects show up later. Mine will be scheduled soon
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I would say that radiation seems like a breeze at first when/if you have just gone through chemo (like myself). Yes, half way through, burns and peeling happens, and though that's awful, it heals. I started having pain and tightness about 4 months after. I started noticing changes to my reconstruction 4 months later (this past August) as if it happened over night. I'm still so exhausted also. I had given up coffee a few years ago until going through radiation all of a sudden I had these strong urges for coffee and caffeine from fatigue just to keep up with life. I'm still drinking it. Anyway. It's the pain that sucks! Avoid radiation if it's an option. Would I do it again? Well, I'm still here and am NED, so that's good! I'm 44 and I'm not done here!
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