Refusing Radiation?
I am 31 years old, and was diagnosed in June with IDC, grade III, estrogen receptive, her2 positive, a 1 cm tumor in my right breast. The tumor was very high up on my breast, so far that the surgeon is saying she may have to move the location of my port when she does the lumpectomy. I had 4 sentinal nodes removed at the same time my port was installed and they were all negative.
I have done 4 rounds of chemo, of which the tumor responded very well to. So well that there was no sign of it on an ultrasound last week, I had an MRI today to confirm. The surgeon and oncologist both say the are expecting a full pathological result from the chemo. My oncologist has said that if the MRI is clean I can be done at 4 rounds of chemo instead of the standard 6. I am also supposed to do the herceptin infusions every 3 weeks for the next year as well as tamoxofen for 5 years.
I know a lot of women with not understand my fears and reasoning for the following thoughts, but I am hoping to find some women that share my fears and thoughts so that I know I am not alone.
I am 31 years old, I am not married, I feel very strongly that I want to keep as much of my original parts as I can and enjoy them for as long as I can. I am horrified by the thought of mastectomy and all the surguries that go along with it. I have existing silicone implants and I am also completely horrified by everything that I have read about the short term and long term side effects of radiation. So horrified that I am seriously considering refusing the radiation. I am also doing my best to research alternatives to the traditional 5-6 weeks of radiation, such as the interoperative radiation therapy. However every thing i have read has said that treatment is reserved for post menopausal women. Since my tumor was 1 cm to begin with and is now gone, the surgeon says she won't really have much tissue to take out, and since it is very high up on my breast the lumpectomy won't change the overall shape of my current breast.
I have my first consultation with the radiologist tomorrow. I am fully expecting to a confused fearful mess of tears after this appointment. I will get at least a second opinion, maybe a third. I live in Kansas and feel have a limited number of treatment options and doctors that don't really want to deviate from their text book standard of care whatsoever. I feel my current treatment plan is very aggressive. I understand I am very young, but I feel that taking the risk now of refusing radiation could give me many 'normal' years with my breasts and should I have a reoccurance down the road I would still have the option to do the radiation or go ahead with the double mastectomy. My gut feeling is telling me that radiation is not for me at this time and that my body will not respond to it well especially with the risk factors of the capsular contractor of the existing scar pocket from my implants. I had a lot of side effects from the chemo, had a hard time with it. I am a redhead and have very fair sensitive skin.
I can't seem to find myself at peace with any decision, but at this time doing only the lumpectomy and not the radiation brings me the most peace. I feel that I caught it early, no nodes are involved, I will be monitored closely, I have had every scan before I started my chemo and they were all clear with the exception of the 1 cm tumor and maybe this is a risk worth taking at this point in my life.
This is the hardest decision I have ever made and I feel completely overwhelmed and lost. Please share your thoughts with me.
Bailey in Kansas
Comments
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Bailey,
Sorry you were dx to start with, not fair, you are so young...
I had a lumpectomy, very easy. I have read about some of the reconstruction stories with mastectomies, scary, so I understand you do not want to lose your implants.
I do not have any great advice or insight on deciding on radiation. I had so much cancer in my nodes, that area needed to be zapped. For me, radiation was a breeze. I did not burn as much as I thought I would. Also, because I was so sick with chemo, I was grateful to be healing from that nightmare. I am sure your oncologists will have statistics of what % of protection from reoccurence radiation would give you.
Wish I had better advice, one way or the other. Usually ladies will skip the chemo, & just do rads if they are not wanting to do both. Your youth, I am sure is a factor.
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I thought it was a requirement after lumpectomy. Has anyone out there had a lumpectomy without radiation?
My surgeon said if I did lumpectomy instead of mastectomy I would HAVE to have it.
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Radiation after lumpectomy is part of the standard of care. My surgeon says the same as yours. Howevery I can still refuse it. I talked to the radiation oncologist today, he said the same, however admitted I am a bit of a a gray area where there is little research for him to really tell me what my local risk of reoccurance would be without radiation. I had herceptin and perjeta in my chemo cocktail which are both quite new and don't have the 5-10 year research yet to back it up. We also talked about acceleration partial breast radiation, which is only a ten day treatment to the local area of the lumpectomy site. I am considering it, however am much more leaning towards not doing it altogether.
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I don't think that anyone has to do anything, even if it is highly recommended.
Bailey, by this time you should have your consultation with the radiation oncologist who hopefully will be able to sharpen the reasons pro and con for radiation. I'm always surprised at what I learn from the RO. Even though I didn't have radiation this go-around, I find her advice to be invaluable.
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Wow my breast cancer surgeon made it sound like I was legally obligated to do it if he performed the surgery.
Well I did refuse chemo when it was recommended on my Oncodx number 34. My doctor was ok with my decision.
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Hi Bailey,
I too was 31 when diagnosed, I'm now 32. I had chemo, then surgery, then radiation and I just finished Herceptin last week. I too wanted to keep my natural parts for a long as I could and can so I opted for a lumpectomy. Turns out I had a complete pathological response to chemo and as a result I questioned the need for radiation. In the end I ended up going ahead with the radiation because I wanted to throw the book at it. I'm risk adverse and not doing radiation was not a risk I was willing to take even if it turns out that I over treated. You have to make the best decision for you with the information available at the time, there is no right or wrong.
I had lymph node involvement so I had a large area that was radiated. I'm a pasty white red head who gets a sunburn through a window. I faired pretty well with radiation, I got really red but it was completely different than a sunburn for me. For me there was no correlation between how I react to the sun and how I reacted to radiation.
I wanted to share my experience with you in case it helps with your decision. I can certainly understand your fears, I had them too.
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Dear meow, you are definitely NOT legally obligated to do anything. Perhaps your surgeon wanted you to do radiation, but he/she cannot legally obligate you to do so.
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One thing my radiation onc told me is that fairness has nothing to do with rad burning. It has something to do with the amount of skin involved. I remember the first part better than the second.
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alexgram is right, fairness of the skin has nothing to do with how much one will "burn". If it were correct then black people would not get radiation burns. People do radiation with implants all the time. I actually think that in this case your age is in your favor. I was 37 when I did radiation and barely had any reaction. The IORT would be the best if you can find a place that performs it.
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Radiation was a piece of cake compared to chemo for me. I did not have any short or long term problems from it & my radiated breast actually looks more 'perky' than the other one!
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Hi Bailey. I refused radiation and my MO was not happy about it, but through a series of complications it would have been 7 mo post lumpectomy. My RO said she understood and that if I recurred, we could do it then. You are the one that decides what will be done to you! But that being said, it is up to you to educate yourself on the treatment options, benefits, drawbacks and ramifications of doing or not doing what is recommended; and then living with your choices. You are young with many years (hopefully) of life ahead of you. Choose wisely.
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Thank-you for your post. I was just diagnosed on Dec 1st. I had my BA in Feb of this year right after I had a spotless mammo last Dec.I finally have the boobies of my dreams ...and now this. I'm trying to find out as much as I can about BC and existing implants but there is not much out there. I also heard that radiation wrecks the implants an My first thought is that they will have to come out.
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JJ , I had a BA several years ago. When I found out I had BS I was worried also. I have heard you can have some shrinkage but I havent I finished a few weeks ago. I'm fair skinned so I thiught I would blister but didn't. I almost didn't get radiation because it was caught so small. But RO said if I didn't there is a 40 % chance it could come back. If I did have it was less than 5 % chance of coming back. Always remember you make the choices after listing to what the doctors tell you. it's your body not there's. To me radiation was easy. I was petrified of having chemo. But I didn't have to. I promised after you talk to your doctors and get the full picture you will know what do. 😊 Sus
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Oh! one more thing. I think the reason I won't get shrinkage is I had very small breast before BA so my breast are made up more with implant than breast tissue. The implants don't shrink like breast tissue die
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Hi-I had bilateral lumpectomies with clean margins, IDC one tumor 1.8, ER+,PR+, the other 1.0, right side, HER2+, allegedly no lymph node involvement,dye failed, finishing up Taxol 12weeks in 3 weeks. Oncotype score of 11 for hormone positives side. radiation consult scheduled but I no longer trust my doctors at all. I am afraid of lung damage from radiation-my father died from pulmonary fibrosis 3 years ago-no idea how he ended up with it and it was awful. I have lost confidence in the MO and the breast surgeon. The nuclear dye failed on me and I kep wondering whether they really got to the sentinel node. I am wondering whether I should have had a bilateral mastectomy. My BS pushed the lumpectomies and my family kept backing her. The MO was uninformed-I had to point to 12 weekTaxol and push it-he knew about but kept dying my left side tumor looked not great-meanwhile, they never ordered an Oncotype test and it came back at 11. Advice appreciated-I'm very nervous
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April8 - In my mind your doctors were correct in not ordering the Oncotype test. The result would not have mattered since you needed chemo anyways based on the HER+ tumor. And you are understandably bummed that they did not locate the sentinel nodes. I understand your fear of radiation, I was really reluctant to do it too. But you do have an option do to the mastectomy you initially wanted and that will allow you to skip radiation. Good luck in making your descision!
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Bailey,
I'm almost in the same situation as you, I have silicone gel implants, had a slightly larger lump, but was able to do dense dose AC dense dose Taxol, has my lumpectomy, and pathology report from surgery showed NO cancer cells, but I just came out of an appointment with rad onco with another appointment with her next week because I cant make up my mind up about if I should have 6 1/2 weeks radiation or not!
With my type of cancer- invasive large tumor nuclear grade 3 with high proliferation rate and Ki67 of 90% there is no definitive direction other than "it's the standard of treatment... protocol" because even the doctors can't tell me if radiation will benefit or do me more harm...
How am I supposed to make up my mind then? Toss a coin? Gut feeling? ......
And, what if I make the wrong choice????
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Bailey,
I was 39 at diagnosis and, like you, my doctor's took the view of "throw everything possible at it while you are young and healthy". I did go to NYC though and was treated at Sloan Kettering.
I had a double mastectomy because my cancer was multi-focal. I thought that meant I didn't need radiation but because I had 1 positive node my doctors recommended I do the radiation. It was a very difficult decision for me and I got three opinions about it before deciding to go ahead. It very much felt like a borderline decision. I didn't find out until the middle of chemo that radiation was even a possibility so it was a big blow to me emotionally.
Where I was treated they actually do the exchange to permanent implants before the radiation. I believe the idea is to disrupt the skin as little as possible once it has been radiated. So I just wanted to tell you my experience having radiated implants. I would say there are very minor differences between the radiated and non-radiated side. The radiated side is slightly firmer and slightly higher than the other side. I really am the only one who can tell, in clothes it looks very normal. My plastic surgeon is amazed at the results - he says that if it weren't for the tiny radiation tattoos he would not be able to tell that I had one side radiated.
The skin looks completely normal. One downside is that my doctor doesn't do nipple reconstruction on radiated skin because of the risk of infection. So I only have nipple tattoos (which I actually think look very good).
I realize that my experience is very different from yours, in part because I am married to my high school sweetheart who couldn't care less what my boobs look like.
But I did want to assure you that radiation, in my experience, really wasn't a very big deal. And my lasting side effects (so far) seem to be very minimal. I am three years out from diagnosis (today).
Wishing you the best,
Rose
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I refused Chemo and Radiation with an Onco score of 34, I do take Tamoxifen and I still have my same MO and see him every 3 months for blood work. I saw my BS in October then we parted ways. She said I'm Ned I believe she removed it all.
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ChaosRains-
My heart hurts reading all the posts from so many other women like me struggling with these decisions.
In figuring out what decision to make regarding radiation I called nearly every major medical and research facility in the states getting opinions, but in the end they were all the same. In the end I refused the 6 week standard of care radiation and found a doc that agreed to do accelerated partial breast irradiation, as easy as it was in theory I still found it horrifying each treatment and had to fight the gut feeling to jump off the table and run out of the room. I am 4 weeks out from treatment and my skin has nearly healed, it is not quite the same texture so far but that is the extend of my side effects thus far. When I thought about having a reoccurance and having to explain it to my kids once again I felt I had to at least do something even if I really really didn't want to. -
I'm so freaked out by radiation. Im supposed to start on Monday. I feel like I change my mind everyday. I am 35 and was diagnosed in May stage 2 IDC, 2 small tumors, ER/PR- HER2+. I had 6 rounds of TCH over the summer and a double mastectomy in October. I was told from the beginning that if I had the surgery I wouldn't need the radiation. Surprise surprise...:the RO had something different to say. I'm still not convinced. I know I'm young and HER2 is aggressive but I had chemo prior to surgery and the pathology after surgery showed NO CANCER. I had a compete pathological response. All lymph nodes were negative and good clear margins. I'm so scared of the late SE of radiation but I'm equally scared of a reoccurrence. I don't know how to make this decision
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Saltygirl,
That is my problem exactly!
I've rescheduled my rad sim twice now, after putting it off for a month so I could enjoy the holidays lol
I had dense dose AC and dense dose Taxol chemo so I know I could get through the SEs... if that were the issue, I probably would be almost done with rads right now rather than still sitting on the fence about it!
I too had a complete pathological response, no cancer cells, no lymph involvement, clear margins... for that reason rads seem like overkill...
I've heard things about reducing risk of reoccurance-maybe- they can't guarantee anything, of course not there is no cure for cancer...
So, to my way of thinking if it is going to happen it is going to happen and no amount of radiation would change that... so why not live with your pathological response until your body tells you differently, then you can fall back to rads if it does happen?
Do I sound as crazy as I feel?
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ChaosRains....you are not crazy!!!! The situation we are in crazy!!!! It's so hard when your doctors can't help you with the decision because they really don't know. My RO keeps saying he thinks I will benefit from the RADs but he can't quantify it. And he really downplays the potential long term side effects. I like to believe that he has my best interest at heart and wouldn't recommend something I didn't need. I just have a hard time accepting an increase risk for other types of cancer to decrease the risk of a local reoccurrence that I don't think is all that high in the first place given I had the complete pathological response to the chemo and a mastectomy with clear margins. And just as a side note. I had a second opinion for the RADS and the doctor said that having a compete pathological response to chemo is the most significant factor in determining if you have a reoccurrence of not!
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When I was at your stage of BC, was told that if I had BMX & chemo I wouldn't have to have rads. Afterwards I was told that I should have rads. I debated, but decided that if the cancer ever came back I would have done everything in my power & have no regrets about "woulda coulda shoulda"
Good luck with your decisions, it's a tough one to know for sure. Best, GG
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It was interesting to read these posts, because I have my consult with RO tomorrow and I'm going in with the mindset that I don't want radiation. I'm currently experiencing the joy of chemo, and will have BMX after that is completed. I'll also be on long term meds therapy afterwards.
My main concern with radiation is long-term side effects, and I'd also like to begin reconstruction same time as mastectomy which I can't do with radiation. So I want to know exactly how radiation would benefit me. Presumably the chemo and surgery should remove any current traces of cancer. Would radiating my incision sites prevent recurrence in the future? I definitely want more information before committing to anything!
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Ugh! Still not getting much sleep, too stressed out about trying to come to a decision...
Thanks for all your replies... I feel so alone in this, none of my friends or family seems to understand my angst... keep forgetting that there are people who understand... here :-)
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I am finding myself questioning radiation tonight. After only 2 doses, my brain is feeling really strange. My body is extremely sensitive so I'm not totally surprised that I should have side effects. I knew about the skin reaction but was hoping that was all I would have.
I'm older and am eligible for internal radiation. I was set up for internal radiation but by the time the surgeon did the procedure to set up for internal, I had already healed inside my breast. She said she could go back in and do another surgery to open the area back up. I just wasn't up for another surgery.
But now, if I'm going to be someone who gets lots of side effects with external radiation, maybe I should reconsider.
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Dear all,
I, too, am wrestling with whether to have radiation. One reason I opted for BMX (w immediate reconstruction) was to avoid it.
Now, post-chemo, evidently it is recommended due to close (but clear) margins, a larger tumor (2.6 cm) and LVI.
I've been combing the literature trying to discern what my risks are with and without it. Here is 1 recent meta-analysis on the topic:
Effect of radiotherapy after mastectomy and axillary surgery on 10-year recurrence and 20-year breast cancer mortality:
meta-analysis of individual patient data for 8135 women in 22 randomised trials
EBCTCG (Early Breast Cancer Trialists' Collaborative Group)* Lancet 2014; 383: 2127–35
Interpretation: After mastectomy and axillary dissection, radiotherapy reduced both recurrence and breast cancer
mortality in the women with one to three positive lymph nodes in these trials even when systemic therapy was given.
For today's women, who in many countries are at lower risk of recurrence, absolute gains might be smaller but
proportional gains might be larger because of more effective radiotherapy. (Note: no benefit with women with 0 positive nodes).
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I write a busy breast cancer blog and have heard from hundreds, more like thousands, of breast cancer patients. I had to have radiation since I needed every tool I could come up with, and I was in my 50s. A lot different than you ladies in your 30s.
My radiation input -- I took a survey of hundreds of women - radiation compared to chemo. Almost every woman said radiation was 85 to 95 percent easier than chemotherapy for them and was far better than they ever expected. That was my experience as well. I never even got tired - well maybe a little. Of course I had some burned skin, but nothing awful, and I'm extremely fair.
I don't know if any of this helps at all, but wanted to throw it out there.
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Thank you, Denise. It's hard to keep all of this in perspective and the voices of those who've successfully navigated the experience really DO help.
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