I’m in the position of trying to decide this as well, a slightly more complicated situation as I live in France. (I’ve posted about my problems on another thread). I think the thing that worries many of us is the possibility of delayed side effects, either soon after treatment ends or well into the future.
I was fortunate in finding my first lot of chemo (EC) quite doable (although I had problems with the Taxol and actually missed the last dose) but it was good to know that I could’ve stopped if things had been too difficult - I haven’t come across people who had unpleasant things happen to them in the weeks/months/years after chemo in the way you hear of with radiotherapy. That means that, when you read people’s positive experiences (which I’m sure is true of the majority) I tend to think “so far” in many cases.
Apologies for sounding negative, just trying to put some of my worries across.
Hi Kathy,
TBH, as the others have said, I really did not find rads a problem & no after effects that I’m aware of.
From reading the forum over the last couple of years, most who join the monthly threads, get through it all ok & I’m not aware of it being more of a problem, than any other of the bc treatments & usually it’s less so.
Glad to feel you can share your worries here, it’s what the forum’s for.
ann x
Yellow, I don’t feel like running - hiding in bed under the covers seems a much better option! I think I’m probably going to have to bite the bullet as I can’t see me managing the hormone replacement therapy and there’s obviously only a certain amount of treatment you can refuse without encountering problems.
I’m planning on going back to the surgeon on Monday and asking to be referred to one of the other centres because, at present, the current Radiologist and team (see my thread) seem to be more of a problem than part of the solution. Hopefully I might have more confidence in a different team.
I had 20 sessions 15 to the breast and 5 booster, it did burn my skin considerably:( even with the moisturiser abs drinking gallons of water. I’m 6 weeks post radiotherapy and have developed a very nasty infection in my boob. Bright red skin and considerably swollen, the BC nurse and my GP said it was from The radiotherapy even after 6 weeks. I’ve been fine and it just came on all of a sudden, fingers crossed it settles down.
This is all so new to me. I just had a lumpectomy. Removed a 5cm tumor. I was told I have DCIS stage zero cancer. I need 20 radiation sessions with 5 years of hormone therapy.
I’m questioning the radiation and hormone therapy with DCIS stage zero. Has anyone else had these thoughts?
Hi just curious to see how you’re getting on! I’m due to see my consultant again tomoro with the hope I will agree to the hormone therapy however like you am not keen. I had a double mastectomy 8 years ago and 6 years later it returned even after taking tamoxifen. I coped quite well on one brand but after I could no longer get it they agreed I could stop. Last year I then had 6 cycles of chemo and 3 weeks of radiotherapy and have since put off the hormone therapy again.
I had invasive ductal carcinoma and after two WLE I was put on Anastrazole and given radiotherapy. The Anastrazole was damaging my mental health due to worry about the possible long term side effects so I went back and they did the Predict score with me and it showed 0.4% benefit and even the BCN said it really wasn’t worth it in my case. I was, however, very sad that they didn’t do this at the point of prescribing as if I hadn’t been so persistent I’d have been in it for 5 years with possible long term issues and no real benefit
I was prescribed Anastrazole which I refused because it was only a 0.4% benefit but I did have 5 radiotherapy sessions (our norm here seems always to be 5)
Such a difficult choice. I’m 54 and I was diagnosed in July when I found a lump. First op removed 30mm grade 2 ER+ without clear margins but thankfully clear axilla nodes. Second op removed 3mm with clear margins. I’m starting radiotherapy in early October. Oncotype score was 15, so a lower risk of recurrence. My Mother had BC at 39 yrs, with 2 recurrences, and at 76 she is still very much with me. Tamoxifen has caused osteoporosis and uterine issues for her.
I’m a registered nurse, so naturally I delved into many research papers, so came prepared with a list to a very patient oncologist.
I suffered terribly with menopause from 50, which after starting HRT at 51 resolved and I finally felt like myself again. Since I tapered off HRT in the last few weeks, I’ve been thrown back into it in a hot sweaty mind fogged way and feel like I have completely lost myself again. Plus the diagnosis and treatment on top! Taking any oestrogen blocker fills me with fear, especially as Venlafaxine has not been particularly helpful. To potentially compound my current symptoms is not an option for me. The box of Anastrozole sits on the side looking at me, and I will make my decision after radiotherapy.
So I empathise sincerely. Above all I relish my quality of life. This choice is completely personal for each and every woman. Sara xx
It is a difficult choice. For me, the second time around, the choice is much easier to make now than 31 years ago. Originally had 2cm, grade 2 nodes clear, lumpectomy, radiotherapy and Tamoxifen. I came off Tamoxifen within 6 months has I had a terrible time on it. My survival rate with it was 82.5% or 82% without. Radiotherapy wasnt an issue until the end when I had booster treatment. Over the years my boob has pretty much shrivelled up to a small hard deformed lump. I am very small breasted, not much muscle to start with lol. In fact, my back measures bigger than my front, havent worn a bra since my 20s! Anyway over the years I have had intense itching periodically, and 10 years ago biopsies due to nipple bleeding. The result was radiotherapy changes, which was affecting me years later. Roll on today, 4cm grade2, same breast, no spread. Mastectomy Monday, no radiotherapy because I can’t have it again. I won’t have hormone therapy because at my age, for me the quality of life is more important. I have just retired and want to enjoy it so I am taking my chances once again.
Just to mention, my Mother also had bc twice, and also cancer in the uterus, she was on Tamoxifen. Cancer free for 16 years, died at 94 with heart attack.
Hello, New here…lumpectomy in a couple of weeks. Contemplating forgoing the radiation treatments as well. Geeze, I got rid of my microwave 20 years ago because the radiation creeped me out, and now I’m facing this! I’ve been diving into the information and found there are recent studies out there regarding older ladies (65 +) by passing the radiation therapy treatments if the situation is Estrogen positive and HER negative. I was happy to come across the articles and studies. I, too, feel that in some cases it may be like using a hammer to crack a nut. Bless you!
angelrainbow, I could have written this! Lumpectomy tomorrow with Lymph Node Biopsy. Also, 65. My situation is quite close to yours. The numbers of the benefits don’t reason with me, and given the side effects (early and later). I just wonder if they did a study with patients changing their diet, lifestyle, and exposure to toxins, if they would find different numbers? I already know which way I want to go, just worried I will make the wrong decisions because I have a lot of life to live yet, God willing. All the best to you!
Hi everyone- i am new to this forum. I was diagnosed in July 2023 with stage 1 grade 2 IDC HER+ but didnt have surgery until January of this year because I developed a problem with low blood platelets at thebtime of the BC diagnosis. After several tests and steroid trials my medical oncologist said I have Immune Thrombocytopenia. I had a 1.5cm tumor removed on 1/25 but had to have a 2nd lumpectomy on 2/7 because the superior margin wasnt clear. Fortunately the lymph node was negative. Clear margins the 2nd time but because of the 2nd surgery which was right behind the nipple and being on a 2nd round of steroids to get my platelet count up, I have some Methyline blue dye that was used to track the sentinel node that caused a black scab to form in the nipple and areola complex now.
I had a radiation consult and was told that nothing could be done until the area heals and drainage from the wound stops. But i was also told that radiation was optional since my risk of recurrence is low. 5.3% if i don’t have radiation and continue taking Anastrazole versus 1.6% if i have radiation plus Anastrazole. My Onc score was 17.
I’m really hesitant to do radiation and i know I will worry about recurrence whether i do it or not. With such low numbers Im not sure if there is any benefit to the radiation in my case.
I’ve been on Anastrazole for 7 months since my first surgery originally scheduled in September was postponed due to the platelet issue and tolerating it well. My breast surgeon has said she thinks I could forego radiation.
If i have radiation I qualify for the accelerated partial breast radiation which would be every other day for 5 days. But still worried about potential side effects. Is it worth it?
I was the other way around - I did radiotherapy because I was told it cuts the recurrence rate by 50% . I also was not sure I could do 5 years on Anastrozole and in fact abandoned it after a few months with the agreement of my breast team . My Oncologist suggested that if I didn’t get on with Anastrozole I could try Exemestane but I decided not to and she had discharged me by the time I stopped.
I had some redness and swelling which did go and some itching which is just about cleared up . There was some fatigue for a few weeks as well but nothing compared to the side effects I was having with Anastrozole . Mine was right sided and I wasn’t asked to do any breath holding and the treatments themselves weren’t unpleasant , also the staff were lovely . I suppose there might be some problems in the long term but it’s almost 2 years ago that I had it and I haven’t experienced any .
I can’t remember what my score was with/ without radiotherapy but compared to the difference of adding in Anastrozole which was only 0.8% over 5 years to 1.3% over 15 years it did feel significant . I personally feel it was worth it . If the score you are referring to is the Predict score ( which is what I was referring to ) then the percentage is not the chance of recurrence it’s the chance of survival . My chance of survival after 5 years was 92.3% after surgery and radiotherapy and only improved by 0.8% with anti - oestrogen therapy .
Unfortunately once you enter BC world you have to make the decisions and they are all scary and none of us will know until further down the line whether they were the right ones . Just make sure you have as much information as possible , if they are recommending something make them explain why in a way you understand , write it all down if you need to . It’s good that your surgeon thinks you could forego radio but is that what she is recommending or what she is conceding to ?. Make sure you ask if there are extra risks relating to your immune thrombocytopenia as that also needs to be factored in. I’m glad that you don’t seem to be experiencing side effects from Anastrozole but if you stay on it then you will need a DEXA ( bone) scan if you haven’t had one already , particularly as you have been on steroids as both can affect bone density.
Thank you for your reply Joanne. I am glad you have had no adverse effects after 2 years following radiation.
The figures I mentioned are for the risk of recurrence over the course of 10 years, not survival. They double after 10 years.
My breast surgeon told me that since my risk is so low, she believes that I could forego radiation. She also said that in the event there is a problem later on, I would be able to have a lumpectomy again if I don’t do radiation.
There are studies I have read that show that women my age with Stage 1 HER+ BC have had the same or similar outcome if they skip radiation and take endocrine therapy. I am 71 years old.