Hello Apug and sorry you are feeling unwell. You have done the hardest part now. After chemotherapy I found Radiotherapy easy in comparison so would suggest you talk to your team about your worries. It still took me about a year to fully recover from the low point after surgery.
There is no need to make an all or nothing decision about tamoxifen before you have tried it. Maybe just try one month and see what it is like? sending best wishes for your recovery
Hello Apug and sorry that you are feeling so low and ill. Treatments can take their toll but I think that you are looking back at the worst. I did not need chemo but had bilateral lumpectomies and radiation to both breasts. Radiation was not bad and only felt a little bit fatigued for a few days. Had to do good skin care to protect my skin but it wasn’t bad as I felt in control of it. I saw a documentary on tamoxifen and it really is an amazing drug as it has saved more women from dying from breast cancer than any other chemo drug. I think taking it one step at a time is good as I nearly went into upper stress by thinking too far ahead. I hope you feel better soon. You can always talk to your breast cancer team about how you feel. Barbara
Really sorry you’ve had such a hard time. It’s a long haul, especially when treatment doesn’t go smoothly. But I agree with GoldenGriller and Hopeful Barb. I had surgery, chemo, radiotherapy and am now on anastrozole. I found radiotherapy a breeze - if it weren’t for the journey to hospital each day I would barely have noticed it happening. Anastrozole has given me mild joint stiffness but nothing serious.
So perhaps talk to your medical team about your concerns. From my personal experience I’d say the most difficult parts of treatment are behind you. And as Barbara and GG have pointed out, the fact that you start tamoxifen doesn’t commit you to continuing if. Best wishes x
Hi Apug! Totally understand how you feel. I don’t know your circumstances or diagnosis, but I see that you’re on the “Under 50s” forum, which suggests you’re younger than I am. I had a relatively straightforward diagnosis; hormone ER/PR positive, HER2 negative. So “easily” sorted. Mastectomy, which got rid of the cancer, (all lymph nodes were clear) I was recommended chemotherapy 6 cycles following Oncotype test which was borderline at 28 (25 being the desired score to avoid chemo). First three chemos (EC) were a breeze; fourth one was a bloody nightmare; I felt like s**t for the full three weeks leading up the next one and, like you I decided (after discussing with hubby) that I was done with chemo. I told BC nurses and they were very understanding, but suggest I discuss it with onco (I had never seen an oncologist until this point). I was dreading them persuading me to continue; thought they’d tell me horror stories, but they didn’t. They just listened and understood. I stopped chemo but went ahead with the radiotherapy, that was easy, no pain discomfort after effects. So I would suggest you give radiotherapy a go, it’s easy, especially if you only need a few. But if chemo is too much for you to bear, then don’t do it if it’s just precautionary……. But if it’s essential, perhaps try power through? You sound like me though, I was determined I was done. Take a look at the predict tool https://breast.predict.nhs.uk/, it’ll give you statistics which puts things in perspective. Best of luck to you xxxxx
Dear Apug2, Just to say that tamoxifen was absolutely fine for me. I think the chemo side effects can take up to 12 months to recover from but it does get better. Some bounce back after a few weeks, but for me it is more of a gradual process. I did feel absolutely worn out by the end of chemo, but had been expecting that as it is hard on the body. I started to make a habit of thinking, I couldn't do this last week, last month etc and then I could see I was recovering. I definitely felt thoroughly exhausted after chemo and that affected my mood too - thoroughly fed up and cross about the whole cancer thing.
You will have an appointment before radiotherapy at the radiotherapy centre. You can discuss all your concerns with the radiotherapy team. The first appointment is just to explain the treatment pros and cons, and a scan to line you up properly for treatments if you want to go ahead. You don't have to commit to it if its not for you. The main thing with radiotherapy was tiredness that completely resolved by 8 weeks, and good skin care with unscented moisturisers like E45.
I hope this awful feeling of being battered after chemo lifts soon. xxx
I would echo what others have said - you are over the worst of it. Chemo is awful, they have to half kill you to get the cancer. But you will recover and as others have said, it does take about a year to get over it.
I found radiotherapy a walk in the park compared to chemo.
I chose to go down the zoladex/exemestane route for hormone therapy so the sudden menopause was intense, but I was going to go through menopause at some point anyway so may as well get it over with if it helps prevent the cancer coming back.
It's hard to see the end when you're in the middle of chemo. It really is putting your life on hold for a few months, but you will recover.
Hopefully al these responses have given you enough strength to go for radiotherapy, and you can see how you get on with tamoxifen. There are a lot of different hormone therapies to try if one doesn't agree with you.
Good luck. Chemo was by far the worst thing for me.
Uuuf I feel you. It’s just relentless isn’t it? Had mastectomy reconstruction, taxol then EC. Next up radio and tamoxifen. I completely flipped my lid yesterday after going for mapping scan which I didn’t have in the end because my mental state was so poor. Later I rang up and told them like you that ‘I’m done’ I want to discharge myself completely. I don’t even feel bad in the sense of being sick or even that tired I just can’t face more and more hospital appointments and having 0 control over my life. Also I’m terrified of getting lymphoedema or severe tightness in my chest (something I really had to work on with the help of a lovely physio after surgery). The one thing that helps me (or most people I assume) mentally is being physically active plus I need the option to do physical work when things aren’t working out with what I do online for work. I’m still not feeling that strong and have an odd painful spot despite the physio work and being reasonably active throughout after initial recovery. Taking the tamoxifen is probably even more scary than radio so I’m putting that off also. I was ranting in doctors office the other day that I don’t want to be tired and depressed for ten years. Sorry I haven’t got anything much encouraging to say but sometimes good to know we’re not alone feeling this. Nice to read positive stories from the other ladies and hopefully we can come to right decision for us either way. Hope you’re feeling better soon x
Watch “Making Sense of Cancer” with Hannah Fry on BBC IPlayer! My sister in law had cervical cancer and had way more aggressive chemo and radiotherapy than I had to endure! She recommended this documentary to me and it actually did “make sense”….. Nobody can tell you what to do, you have to decide for yourself! Sometimes the - not feeling “ill” - creates more questions and conundrums. As you’ll see in my previous post, I stopped chemo earlier than recommended; for no other reason than, it didn’t feel right! But I’m older and perhaps have a different diagnosis. But the “experts” don’t know everything. Best of luck to you, think hard though and do what you feel is best for YOU! Lots of love xxx
Thank you :) I will give it a go tonight! Yes it’s hard sometimes- it’ feels like you’re going crazy because seems the whole world thinks you should do it all however they word it or present it to you. I rebooked my scan for next week so we shall see.. Hope you and your SIL are both doing well x
Hello - just been told that my post mastectomy scan was clear. But suggested oral chemo for 18 weeks - 6 cycles of 3 weeks. Then radiotherapy. Am going straight for radiotherapy- cannot cope with more chemotherapy- more bloods, more worries re white count etc. and like someone else said 0 control over life. Not suggesting you or anyone refuses anything but enough is enough. I stuck it out for the last year and am extremely grateful that they got it all out.x
