I’ve had a mastectomy. I plan to agree to the proposed radiation therapy to my chest wall, axillary and supraclavicle lymph nodes. And agree to shutting down my ovaries with an injected drug, plus 5-10 years of an aromatase inhibitor.
However, my Oncologist wants me to also have chemotherapy just in case the cancer recurs elsewhere in my body in the future. She said chemo will add a possible 9.5% increased likelihood of survival after 10 years.
I do not want to have chemo. On top of all the other treatments and their side effects, and some chronic health conditions that I already live with, it’s too much.
Has anybody turned down chemo or any other aspect of their proposed treatment plan? What were your personal reasons, and how did you rationalise it to the doctor?
I had a similar experience. I had a lumpectomy and reconstruction with 3 lymph nodes removed last September, which were clear. I was also told I’d need two weeks of radiotherapy.
Due to further test results my oncologist then recommended 4 sessions of two different chemo drugs. This had been my worst nightmare.
I had two rounds of chemo and then stopped. It was taking a massive toll on my mental wellbeing, and being in the middle of the pandemic. My oncologist offered to reduce the dose or switch me to another chemo drug but nothing would have convinced me to carry on. Whilst he is an expert in cancer, I am an expert in me and I knew I’d reached my limit of what I could tolerate. I had discussed this with my BCN who subsequently joined the call with the oncologist to support me and to be sure sure I had all the information to make an informed decision. I’d also done a lot of my own research.
I had my ovaries removed in February and am now on aromotase inhibitor (Anastrozole) for 10yrs.
Hope this helps. Happy to chat more if it would help but remember it’s your body and as long as you’re making an informed decision do what’s right for you. I don’t regret my decision to this day - it was the right one for me.
No one wants to have chemo but 9.5 per cent is a significant number in improving survival rate . Mine was six per cent and I had no hesitation in going for it. It isn’t nice but it passes and they look after you. I had 9 weekly paclitaxel plus 3 FEC took 18 weeks plus radiotherapy lymph node clearance. Please listen to your oncologist . And don’t turn down what could be a lifeline long- term
Hi. I am questioning chemo. Which would add 8% survival after 10 years. First round a week ago, hit me like a truck same day and ongoing. Need to know consequences of saying no.
As you say, it’s your body, your decision. But make sure it’s a fully informed decision, not one driven by fear and anxiety. They in themselves are horrendous (I’ve been phobic most of my life) but they can be treated alongside chemo. I almost rejected chemotherapy out of fear. Fear for the treatment, fear for the side effects, fear of my own fear. Fortunately I had a breast care nurse who turned to her student and said as an aside “This isn’t just anxiety, it’s a lifelong condition” and I knew they’d help me every step of the way. No one wants months of constant illness, though you do get used to it to some extent. Everyone is fearful of it because of the bad press it gets. When did you last see a headline celebrating someone’s recovery? Not interesting news.
I confess I’ve had to delay writing this for half an hour. At first I was heading into writing a diatribe you just don’t deserve. As you and I have said, your body, your choice. But speaking as someone who got a secondary breast cancer diagnosis this Spring, for which there is no cure, please find out the likelihood of recurrence in your case. My body was totally cancer-free after the full works 2018-19. But scans can’t pick up everything. Surely a few months of illness and anxiety (which can be controlled) is better than endless chemotherapy, knowing in the end it will be futile. Months? Years? Who knows? I’ve just read a post on a different forum from someone who has lived 18 years with her SBC. But that cloud of ‘when will it be?’ hangs over you and those who love you and there’s no way of putting it right for them. My heart breaks each time I catch my husband looking at me as if to imprint a memory. I’m ok with the diagnosis. His world has fallen apart, I can tell.
I’m sorry to be the one to challenge you (remember, I do respect your decision) but sometime down the line, you could find yourself in my position. Find out the likelihood please before committing yourself to an irreversible decision.
Wishing you a good recovery, whatever treatments you have,
Today I had a proper meeting with my Oncologist. It was a very different experience to this time last week, where the appointment was led by someone else on her team, and the Oncologist herself just flew in and out for literally 2 minutes, and seemed very stressed, adding some slightly contradictory information to what my partner and I had just had explained to us by her colleague. Spending time with the Oncologist today, I think last week she was just having a bad stressy day - we’re all human.
Today was calm and measured and I felt listened to. She accepted that I feel that chemo is not the right choice for me and accepted my reasons. She explained that chemo may or may not have worked anyway, and that would be down to my particular cancer. I said that a Macmillan nurse explained to me that the window of opportunity for chemo to best work for me is probably now, and that’s a small window of opportunity, and I accept that risk. She seemed content that I’m fully informed to make my decision.
The Oncologist said that if there is a recuurrence of the cancer one day, chemo may be a possible treatment option to reconsider again in the future. And I’m okay with reconsidering it again one day if I have to. Maybe my priorities or values will have changed by then. But now, in the context of my quality of life and co-morbid conditions, it’s not my idea of wellbeing.
She (mistakenly) thought that I am post-menopausal, so something on her notes about me isn’t quite right. But the fact that I am pre-menopausal has opened up some choices in how the hormonal therapies are administered. Which is good and gives me a (small) selection of choices if one drug’s side effects are particularly bad.
She has set the ball rolling so that in the next week or two I should be having my radiation assessment/set-up appointment, and three weeks after that, 15 sessions of radiotherapy begin. When the fatiguing side effects of that pass, I’ll start the hormone therapy(ies).
I feel a great sense of relief and at peace with my decision.