CeliaRose thank you so much for your lovely message. It is great to hear that you are doing well after making your difficult decision. I so very nearly didn’t post at all on this thread, since I felt others wouldn’t understand and this road can be such a lonely place at the best of times. Thank you for your kind, understanding and encouraging words, showing that there is a life beyond.
If it helps there's lots of us out there who have made this very difficult decision to decline chemotherapy. My Predict score showed a 4% benefit which I felt wasn't enough for me to go through this grueling treatment. I felt it was over treatment and the side effects outweighed the benefit, especially for my type of Breast Cancer which is Oestrogen positive. I, like you have been advised, have had radiotherapy, am currently taking Tamoxifen and Prostap injections (for Ovarian suppression) and I am tolerating them well so far. I felt very emotional the first couple of months but I don't know if that was because I had finished active treatment or the Tamoxifen. Either way, it seems to have settled down now. I get a few hot flushes, mainly at night but they're manageable. I was prepared to try the Bisphosphonates but there was only a 1.6% benefit and my oncologist said, again, it was too smaller benefit to outweigh the possible side effects.
I would be lying if I said I don't worry from time to time about my decision but as Pat mentioned very well in a previous message chemotherapy is no magical cure and I think recurrence worries come with the territory. None of us knows what the future holds and I'm learning to just live and enjoy the present and accept what will be, which hopefully will be a healthy, long life for all of us but if not so be it.
I wish you well with the rest of your treatment. All the best x
I’ve been mulling over this precise decision for far too long now. I have PTSD which makes any/all medical contact/intervention deeply traumatic, and sadly this has very much complicated my journey to date. The predict tool wasn’t terribly encouraging at all in my situation. It was initially presented that chemotherapy was a “must do” for me. Having ripped myself to pieces for months, I’ve today finally decided that chemotherapy isn’t for me. Was this an easy decision? Absolutely not, its one of the hardest I’ve ever made. Is it the right decision? I guess time will tell. Is it the right decision for me and my family at this time? Yes. Do I feel guilty already? Yes but I also know that there is no practical scenario whereby I could sit through chemotherapy and retain the essence of me 😭.
I realise that by opting out of chemotherapy which was scheduled for 4 x EC then 12 x Pac I’m travelling a road less travelled, and this may well affect my overall life expectancy. Due to some random and total fluke I was seen by a very eminent oncologist last week. I’m following their advice i.e. just because the treatment plan says xyz doesn’t mean that’s right for you - the treatment plan has to match the patient. His strong advice was that IF I decided to reject chemotherapy I MUST do radiotherapy, tamoxifen, ovarian suppression and biophosphonates which together and combined should massively boost my life chances. All of these were, he felt, more realistically achievable for me. There are no other (sensible) opt outs for me, but he has helped me to appreciate that there was another path, which in my particular circumstances is equally valid.
I wish I could have taken a more regular route, but since you can’t treat the trauma of PTSD whilst you’re in it, I have to do what I can, and not what others think I should do. To chemo or not, is not an easy decision for anyone. All any of us can do is try our best and do what we can do, and move on from that we can’t. With love and respect to you all whatever you decide.
I went with what all my specialists recommended, chemo, surgery, and soon-to-start radiation.
They have seen and treated more cases - so you have to have faith and take on board what they suggest, they are not making these decisions lightly. I know it is difficult, and I was told that my chemo did not reduce the size of the lumps in my nodes, but they did in the breast - do I regret going ahead - not at all.
I wanted to give myself the best chance possible, I would hate to be told or even think that x amount of months later I made the wrong call.
My cancer had not spread but was told whilst waiting for my op and radiation the chemo would help to stop it spreading, as said it is a systemic so I was glad of that wall of defence.
Good luck with your treatment xx
I must have missed this discussion when you originally posted.
Like you, I made the decision not to have chemo. My Predict score for chemo benefit was 3.3% at 10 years. The oncologist said that with a score below 3% the risks of chemo would probably outweigh the benefit, a score of 5% and above would definitely see chemo recommended, and then there is that troublesome grey area in the middle, where no one helps you out, that causes so much agonised soul-searching and head-scratching. I say that ‘I made’ the decision not to have chemo but I do feel that I was rather steered away from it. My one and only meeting with the oncologist was made on the day that the first Lockdown was announced with all those in the consulting room expecting a tsunami of Covid patients imminently and with the chemo suite of my conveniently local hospital being moved 20 miles away for the duration of the crisis. So there were outside influences at play. I had previously been of the conviction that I would definitely want to throw absolutely everything at it.
I had a mastectomy and a SNB where the one node removed proved positive, despite pre-surgery scans suggesting otherwise. I joined the POSNOC Trial and was randomised to the surgery arm so later went on to have a full axillary clearance. Perhaps if I hadn’t had the lymph node clearance I would have been more anxious about declining chemotherapy. I had Radiotherapy and have now been on Anastrozole for a year. And so far, so good.
I certainly had reservations about declining chemo and fretted about my decision in the early months. But I am acutely aware that chemo is not the magic bullet for everyone and I am gradually allowing myself to let go of any lingering doubts or regrets about my decision. None of us are blessed with the gift of hindsight. We all make these awful time critical decisions with no dummy run. I have chosen to let myself off the hook, put my trust in the team that treated me, own my decision, live in peace with it and move on. The nagging doubts do resurface from time to time but I think that comes with the territory, whatever the choices we have made.
Well done for making a difficult decision that works for you and good luck with the rest of your treatment.
The worry isn’t recurrence it is metastasis to other parts of the body and that is really what chemo is about because it is systemic - local recurrence still won’t kill you secondary breast cancer is incurable and that is why despite also being borderline I had the lot . No regrets and I had clear lymph nodes .... but grade 3 cancer . Please ladies listen to the oncologists they do not suggest chemo unnecessarily. Am now two years down the line ....
Apologies for the delay in replying and thank you so much for your response. I'm so sorry you are suffering with side effects from the chemo and I hope they improve soon.
It has been a very difficult decision but after much deliberation I have decided not to have the chemo. As I mentioned before my Predict percentage is borderline so it's questionable if the chemo will be of benefit or not. I was very worried about the side effects of chemo, especially the Phlebitis as I had that after my surgery and that resulted in suspected DVT, injections of blood thinners for 6 weeks, along with the worry of a blood clot.
I must admit after I made my decision and I told the hospital, I was expecting to feel relief but I didn't! I still have worries about the recurrence, feel guilty and worry if I've made the right decision, but I'm hoping in time that will go and I will learn to live with decision. Tbh, after breast cancer I think there is always that worry of recurrence but we must not let the cancer beat us and enjoy our lives.
I'll be starting radiotherapy soon and then hormone therapy.
As you mention, the medical experts don't know all the answers as they said you only a had 2% chance of recurrence and then you had a recurrence. They can only work with the information they have and none of us know what the future holds, good or bad! So I think all we can do is work with the information we have at the time, go with your instinct and believe in fate, "what will be, will be"!
Thanks again for sharing your experience and good luck with the rest of your treatment.
Hi Celia Rose
My predict score for chemo at 15 years is also 3%.... it’s puts my overall survival percentage at 84.... I also had 1 node positive..... I was advised to have both chemo and rads....... so it was an easy decision for me......lwe probably have lots of other differences that mean your oncologist is happy for you to make your own decision.
personally I need to know that I have thrown everything at it that I can and if it does come back I will have no regrets. When I had DCIS non invasive BC 4mm in 2012 I was told I had only a 2 % chance of recurrence....I was told radiotherapy would not be of any real benefit.....yet even with those Small odds the BC still returned, this time invasive.....I still wish to this day that I had pushed for rads.....but who knows.....no one has crystal balls....we can’t see into the future.
i have now finished chemo and rads and just started on hormone therapy......I have been left with peripheral neuropathy from chemo and an ectopic heartbeat for which I am under the care of cardiology.....I am hoping neither will be permanent.....but I just don’t know at present...so I understand it’s a big decision as chemo is very toxic...If I had to make the decision again based on what’s happened to me....I would still have it....i don’t think me personally could live with thinking....‘should I Have had it?’.......but that’s me and I’m sure people decide not to have chemo and are able to park it and move on with life.
So you have to make the best decision for you......as long as you are fully aware of all the risks/benefits then you can make an informed choice that you will be happy to live with.
I wish you well With your decision making
take good care
Has anyone made the decision not to have chemotherapy and go straight to Radiotherapy because you felt the side effects outweigh the benefits with low Predict percentage? My oncologist didn't seem too concerned about my pathology results even though I have macrometastasis in one node and my NHS Predict result was 3% (so borderline) and the only reason would be to avoid reccurrence. I'm finding it hard to make the decision whether to have it or not? Has anyone been in a similar situation and what did they decide to do? I'll definately be having radiotherapy either way.