I had a mastectomy and auxiliary node clearance on the 14th October, results today were 3 tumours, largest 75mm, all ER+ & HER2-, with 2 of the lymph nodes being positive for the cancer. My consultant is happy that he has got all of the cancer with the operation but still recommends chemotherapy / radiotherapy / hormone treatment to follow.
Now… At 47 I am my oldest living blood relative, going through both parents lines no-one makes it past 60 and apart from my father (who passed away at 59 from colon cancer) it’s all been due to heart problems.
I suffer badly from mouth ulcers, to the degree that I ended up with meningitis about ten years ago starting from a simple mouth ulcer, since having my son I struggle with anaemia, I managed to get a stomach parasite which landed me in hospital which is only found in Australia and I’d never been abroad! My pregnancy ended in eclampsia and a c-section 8 weeks early and every time I have a cold I end with 5-6 weeks of coughing and long recovery.
My mastectomy went well, although a hiccup that night I went home the following day, but within a week my drain blocked and I needed emergency out of hours help - this became a nightmare of not being listened to by doctors, not getting adequate pain relief and my seroma becoming badly infected, leaving me with very little confidence in the adequacy of care I am to expect. It doesn’t particularly help that I am allergic to morphine, so the normal “go-to” pain relief is unavailable…
Soooooo… I’m not confident that having chemotherapy is going to be worth doing, I’ve little problem with the radiotherapy and hormone treatments (although the latter doesn’t sound fantabulous fun I see it’s worth) but I’m not sure the risk of side effects with the chemo alongside my expectations of poor care if something does go awry are really worth any advantage I may gain from having the chemotherapy.
I’m also not sure how to address this, I have my first meeting with my oncologist on the 18th and really do feel the need to at least question this, and really I want to refuse…
Don ‘t refuse … seriously . I had 12 chemo treatments it was hard but do-able was never sick just bit nauseous slept a lot wouldn’t like to do it again but my view was if they recommend costs NHS and probably necessary . Reconsider x p
What a pickle. It’s hard when you have no confidence in your team. And even worse when you have no confidence in your future. Writing yourself off at 47 rather distressed me. At 67, I didn’t think about death to be honest, just getting on with it all. What does your son think?
First, your oncology team is separate from your surgical team so it would be a fresh start.
Second, although statistically it doesn’t look like chemo makes a major difference to long-term survival rates, that’s just statistics. If. say, it makes a 3% improvement, that includes people who’ve found a 100% success and those who’ve found no improvement - and you have no idea where you are going to be. What if you were in the 100%ers? With infected nodes, the more treatments you have, the less likely you are to experience a recurrence.
Third, you’re wise to stop and think. Chemo wiped me out. I was like a zombie for a lot of the time, responding quite badly. BUT I know of others who almost sailed through. It’s a lottery. However, the mouth is definitely affected and, though the hospital pharmacy equips you with everything you need to manage it, it’s not easy. The option is there to reject the treatment but I’d say discuss it with your oncologist to be sure you make an informed decision. I am the biggest coward, all I cared about was my phobia for vomiting and I saw chemotherapy as this impossible monster. The oncologist took this on board, even arranged for me to visit the chemo suite before making my decision and they made special arrangements to accommodate my fears. I never even felt sick, never saw anyone sick. It’s not great as a treatment but it is manageable and we all get through AND you are monitored very closely for side effects so there is an option to stop at any time. I was given the option twice but kept going.
Please take someone with you when you meet the oncologist. Someone who can have your list of questions to hand and make notes, maybe ask the questions you forget. Nothing really goes in but you can have a proper conversation and express your fears and doubts and your oncologist can talk and show you the stats and your companion can jot everything down to think about later. You’ve also got a hand to hold or shoulder to cry on if you need it because it’s a tough conversation to have at the best of times.
I hope you resolve your dilemma. I’m a year on from surgery, 6 months on from chemo, still a few minor side effects. But I have no regrets at all in just grabbing all the treatments on offer even tho they terrified me and and made me more ill. They’ve given me confidence. What’s important is that you make an informed decision for your particular diagnosis and personal circumstances - make sure the oncologist is aware of these. I hope your oncology team is way better than the surgical one!
Wow, that’s a big decision! I’m sorry you have had so many things to deal with over the years, but it doesn’t mean that chemotherapy will be the same. I can understand your fears & worries about it, but please do talk everything through with your oncologist before making a final decision. Life is precious, and so is yours. You have people who love you.
Hi Fluffball, I’m pleased I read your second post as your first one read so negatively I was a bit, very, concerned. So , basically A&E is rubbish so why go there? It’s full of sick people!!! I have an alert card to carry from my hospital and as soon as my temp hits 37.5 I’m admitted. I’m afraid it does tend to zoom up alarmingly, but I haven’t been there for five months so that’s great. I was thinking of naming a ward after me as even a little scratch when rock pooling saw me in hospital with sepsis ? I think you’ve had an incredible array of health issues and can only say how pleased I am that you have confidence in your Onco , always a plus. I’m sure that your very sensible questions will be answered and you can make a reasoned decision. Also please take on board what people are saying, that the chemo myth does frighten people off. I was on FEC-T so know about mouth issues, or rather, I don’t as at the first sign I took manuka honey which sorted it for me! A miracle complementary bit of goodness. Wishing you all the best for your next meeting. X
Ahhh well. . Diagnosis got updated after some more test results to T4N2Mx - so the chemotherapy is now classed as essential although it’s annoying how long it’s taken to get to this diagnosis and even then the Mx part is basically saying they still don’t know much!!! Aaarrgghhhg!!
Hey ho… Starting 9th December, had heart tests and lots of reassurances… Thank you everyone for your help, support and input!