Hi, I’m reaching out to anyone who has experienced this: I’m 45 years old, diagnosed in June with early stage invasive breast cancer, had successful lumpectomy in August, margins and lymph nodes clear, strongly advised to have chemotherapy after Oncotype DX results. Started chemotherapy early October and have reached the half way stage but am having a massive wobble. Feel like I cannot continue with it. I have massive issues with the whole procedure, anything medical is a real challenge for me. I am a massive over thinker and need to know the ins and outs of everything but having this knowledge makes me feel worse about the chemotherapy. Knowing what it is doing to my healthy cells is a devastating thought. But the worst part is not knowing if the chemo will have actually done any good. I always had doubts about going ahead with it because of the uncertainty of ever knowing if it has worked. But I managed to keep a lid on that doubt up until now. And now my head and my heart are shouting STOP! I’ve spoken to the specialist nurse who was amazing and reassuring and supportive. She suggested posting on a forum amongst other things. So I’m giving it a go. Ultimately I know there is only me who can make the decision but I Would really appreciate your views/experiences.
Oh massive hug Caroline! Even tho I had minimum side effects I really did feel like stopping all treatment at the half way point. Was and probably still am depressed, even now having finished chemo and half thru rads I wonder if it’s truly worth it but I do know it is.
i didn’t have a breast care nurse or any support at all but I did carry on and so will you.
its horrid I know and everyone seems to be happy and getting on with & enjoying life except us, BUT it is getting better I now have episodes where I enjoy what I’m doing, and can think about tomorrow. And so will you. You aren’t alone and please keep posting xxxxx
Hi Caroline, So sorry you are struggling with this. Of course it has to be your decision but I’ll add my experience and hope it helps. I was in the same position - advised to have chemo to reduce the risk of cancer coming back, without knowing for sure if it was necessary. In the last few years I’ve had a primary on each side, both thought to be nodes clear and chemo either not offered or not essential, so I did not have it. This year I had a recurrence in one armpit - so clearly some cells had lurked there undetected. I had full node clearance and there was still every chance that nothing had spread further, but chemo was recommended and I finished in July. There seems to be no way to know for sure if BC cells are lurking and I share your frustration with that. But they might be there, and now I’ve finished chemo I feel the chances of that are much much smaller. My oncologist said some cancer will never return, some will return whatever we do, and some would have come back but are killed off by chemo. I decided to give myself the chance to take out that third group. He also said its like every chemo session hits all your cells on the head, the healthy ones get up quickly, while any cancer cells try to get up but each time they are hit they get weaker until by the end they are done for. So I’ve gone through the chemo, I’ll never know if it was needed or has worked, but I find it good to know I have done all I can to protect myself. Chemo is tough, but we recover, and I’m already feeling loads better. Do keep talking to your nurse and team, they may be able to moderate doses etc if it helps you keep going. Good luck with whatever you decide. Mo xx
Caroline
Hi, totally know where you’re coming from, mine is however from a different perspective ( I think). I have grade 3 invasive ductal cancer & am have chemo pre surgery (I am 50).
I started EC beginning of Sept and was just fine on it, after first was in hospital with neutropenic sepsis but just felt rough the first day and fine the other 4 days and really (odd I know) enjoyed my stay in hospital, lovely nurses and own room (as was in protective isolation), so no nausea/sickness from EC just a couple of days felt rough. So I thought Paclitaxel, of which I had my first one (of 4) last week, would be a breeze - wrong!
Its getting better but taxol has given me very painful feet which has been affecting my quality of life, which for me is very important. Also there is a risk this foot issue could be permanent and could recur after I finish treatment, so less than ideal in my book.
The docs are to reduce the dose of the next one given my “severe” reaction so early but I’m challenging them back as I do not want anymore of this taxol and have worsening pain in feet, I’m happy to go back to EC or perhaps something else or move forward surgery.
Having explained this to my BCN am seeing the oncologist Tuesday to discuss options particularly in light of very good MRI results re size & density of lump area. I personally am willing to take a risk of reduced longevity for an improved quality of life, but obviously that is my choice and I would have thought most people would want to make sure that they were as rid of cancer as possible so take all treatment suggested.
I do feel having looked into things a bit more that chemo can be a sledgehammer to crack a walnut and that if one is badly affected by side effects there should be other informed options outlined by support teams rather than just ploughing on.
Not sure you’re aware, and you may want to look at a website that tells you (as can your support team) the benefits of the various treatments, probably best done with your support team, its breast.predict.nhs.uk so you can make an informed choice.
I would have a discussion with your oncologist to see what options are available and the risks & benefits to you given your particular circumstances.
Just to add to the massive encouragement you have here, I had a horrid time with chemotherapy (3xEC and 9xPaclitaxel) and, six months on, I’m still struggling with some side effects. When I was admitted with neutropoenic sepsis, I was told I was “one of the unfortunate few who does not respond well to chemotherapy.” Great. However, that was at the end of the ECs, so I thought paclitaxel would be easier. Nope. So they gave me a week off (during which I damaged my ribs in a car crash!) and then back I went, after discussing the options. I think I didn’t want to have got so far and suffered so much without getting the full benefit from the treatment. Ok, statistically it may not be great for me but psychologically it was important. The only thing that got me through was by looking at how much chemo had passed and how little lay ahead (like counting to the end of term - as a teacher). Getting to the last session was physically like being dragged there. I refused a wheelchair on principle but did start using the lift lol. A couple of weeks later, I was up and bouncing (relatively speaking). Those healthy cells repair pretty fast.
Only you can make your decision but obviously there are several women here who’ve touched that nadir, psychologically or physically, and found the resources from somewhere to struggle on. But it’s all relative. We’re not YOU. Good luck with the rest of your treatment, whatever form it takes,
I know exactly how you feel, I had my 5th of 6 last week (3 FEC & 3 Docetaxel). I could feel that my tumour had shrunk after my first treatment so by the time I saw my specialist it had shrunk significantly, I had a bit of a melt down saying “why do I need more treatment when they know it’s shrunk?”
Obviously you have already had surgery, mine will be mid to end of January (mastectomy & removal of lymph nodes). Chemo is bloody awful but I just wanted to get on with it and get it over with and I’m almost there, my last one is 16th December, I’ve bought a bottle of Moët to open on Xmas day, doubt I’ll feel like drinking it but it’s there anyways.
When it started it felt like a lifetime but it’s nearly over.
Please keep going, hopefully it’ll all be worth it in the end.
I seem to be in the very same situation you described in an earlier post with similar diagnosis and also had a lumpectomy with lymph nodes clear etc. I completed my first chemo cycle in December. I was due to have the second one today but cancelled after speaking with my breast nurse as I hadn’t slept for three nights before with worry and dread and the breast nurse suggested I was not in the right frame of mind.
Hi ,
I know how you are feeling ! I have done 5/6 TCHP chemo but each time it’s been worse, I’ve struggled more mentally , I’m so sad all the time, and just feel
Like chemo has broken me . I’ve had an ultrasound and my tumour has shrunk I just want it out . I’m so close to the end but I just don’t feel I can do the last one because I’m scared there will be nothing left of me !