Hello all.
I’m a first-timer here, hoping you can help.
I was diagnosed with bilateral bc last August, lumpectomies and lymph node clearance (left armpit) September, 6 cycles of chemo (3 EC, 3 docetaxel) between Nov and early March. Been on Letrozole about 3 weeks, tolerating it ok.
I had planning for radiotherapy end of March, appointments to start 2 weeks ago. However, on the first day I rang and cancelled. I’d had a fairly unpleasant experience at the planning, and sleepless nights worrying about the treatment (because it’s both sides and collarbone it will take about half an hour each time). Consultant also said I am likely to burn because of how skin folds when I lie down.
I had a post-chemo check up yesterdAy and was given the hard sell by oncologist and specialist nurse about why I should have the radiotherapy, but I’m sick and tired of the treatments, scared of the process and side-effects, and want my life back so badly. I spent all yesterday in tears and I’ve hardly slept (so sorry if this isn’t wholly coherent!). I was happy with my decision not to have the radiotherapy until yesterday, but now I’m in a bad place and I don’t know what to do. Any advice/experiences/support would be gratefully received.
Hi Bertcat
I am really sorry to hear how you are feeling. I have had a different experience to you, and I don’t think I could give you any advice. The nurses on the helpline here may be able to offer some information to help you think it through?
You said that you are scared of the process and side effects - I am two thirds of the way through my radiotherapy and if it would help you I’m happy to tell you about that experience. Feel free to post here or message me if you prefer.
Thinking of you x
Hello Bertcat,
How are you doing? Sometimes, we just need a little time to process our thoughts and fears and come to a resolution that we are at peace with. I hope you have managed to do that. Maybe talking things through with one of the nurses here on the helpline may be useful for you.
Sorry to hear that you have had such a difficult time. It is bad enough having cancer and treatment in one breast never mind both sides. Without going into detail, I can totally relate to your statement “…I’m sick and tired of the treatments…” It is hard weighing up the pros and cons of each treatment and reaching a decision that we are comfortable with (and yet not without some residual reservations!). You say you were first “happy” about your decision not to proceed but this changed after your latest Onco meeting. What was said that caused your current turmoil?
Initially my treatment was going to be lumpectomy and radiation. I was not overjoyed about the radio part but I accepted this was the best way, especially based on all the research and information available regarding reduction of risk of recurrence etc. Lumpectomy is usually always offered with radiation at the outset although it may be performed on its own in some instances of DCIS. However, I still had concerns about rare long term side effects like lung damage. If it had been my right side, I would have also been concerned about heart damage, especially as I was on Herceptin as well. I did look up the risks of long term damage and compared them with the risk of recurrence, especially as the tumour was triple positive. It was also reassuring to know that there were techniques to protect the heart, and that radiotherapy treatment had become more accurate in, for example, protecting the lungs. The reduction in risk of recurrence outweighed the negatives for myself. I was not overly concerned about short term effects such as skin damage and burning. I was probably more bothered about trudging to the Hospital everyday for 3 weeks to expose myself for a few minutes of actual treatment then any relative short term side effect.
I ended up with a mastectomy by the way, but still went through Radiotherapy. It was at this point that I was thrown into turmoil as the reasons for and benefits of it were not at all clear. I still went with it even though I had just about had enough after nearly 12 months since diagnosis. The deciding factor was that if I got a recurrence, I did not want to end up torturing myself with the “What if I had had it” routine! During treatment, I had no skin issues, no additional fatigue, and felt no additional side effects added to the crap I was already feeling from other treatments completed or ongoing thank goodness! I had also started Anastrozole just before the radio.
No one is going to force any treatment on us and we have the right to refuse. Whether you are going to accept of refuse the treatment, just make sure you are making an informed choice that you can live comfortably with. Wishing you the very best Bertcat,
Chick x
Hi Bertcat,
It’s reassuring for me personally to see how your views are changing with time, mood etc. I’m having my final chemo next week and was set up for radiotherapy to start mid-May. However the initial session, with CT scan and tattoos, was due next Monday, Then I had my first car accident since 1975 and took the full brunt of the steering wheel in my chest. With severely bruised cartilage and what’s left of my left breast muscle screaming in protest, I asked for a delay. I’ve been given anti-inflammatories for a week and my radiotherapy has been put back 2 weeks. Hopefully by then I shall be able to lie back and get my arms to the right positions they need. Breathing …hmmm, I plan to practise while the anti-inflammatories are working.
Unlike many here, I consciously chose the reverse approach and deliberately have asked as few questions as possible, let alone googling, as I know factual knowledge would raise anxiety levels and make decisions harder. I opted for complete trust, which is completely uncharacteristic but has got me this far. However, my oncologist did say recently that, while he and many others are not convinced that chemotherapy has a significant impact for many (statistics of course - but they can’t select who will benefit so they give it to everyone - just what I wanted to hear as I struggle with the vile Paclitaxel), he is absolutely convinced that radiotherapy makes a significant difference to rates of recurrence and, although the choice is mine, he would encourage me to do it. I am Queen of the Wimps and have needed support all the way through chemo with lorazepam and a rigorous anti-nausea regime - the hospital has been wonderful in their support - so I plan to just keep accepting the advice of the experts.
I do hope you’ve gone ahead and your fears are allayed and I truly envy you your ability to cry. Please give us an update. Like you, I’ve just about had enough (yesterday I was there 6 hours as there was a mix-up and my records had vanished, the nurses assuming the pharmacy had them etc etc and got home at 7.50!) but, compared to what we’ve already put ourselves through, what’s another three weeks, even if it’s daily? Btw, I’m on my one-day steroid boost - I might write something completely different tomorrow lol. Good luck and I hope you make/made the decision right for you.