I had a lumpectomy in 2016, bilateral mastectomy in 2023 and wide exision lumpectomy in June this year for chest wall cancer. I have just finished radiotherapy.
I have tried all available a inhibitors each time and had to come off as they make me so dreadfully ill.
I have lived with long term inflammatory chronic health conditions for over 40yrs - M.E., Fibromyalgia and POTs. I am disabled and house bound because of them. I'm 74 and live alone but have a supportive family.
The medication seems to react with these conditions and I am in extreme pain 24/7. I can't function on any level whilst using them. The M.E. team advised me that they were targeting the same systems so it was like a double whammy of impact.
Though I have tried agin this time I have decided after a month I can't live like this and though understanding the benefits, know it's not an option for me. I have the full support of my family and friends and have been told by breast care nurses and my GP that it is totally my decision and they understand.
My consultant however is not happy! He cancelled my final meeting with the team and himself and phoned to say that as I was 'unwilling' to persevere with the treatment he was offering, he couldn't see the point in my going. It's left me quite anxious and with no sense of closure. I undertand it may return. That I can deal with ... He says it WILL return. Even believing that makes no difference to my decision as it isn't a case of being 'unwilling' but of 'being unable'.
I am quite stoic and not a worrier but I have become anxious and feel that i have been left alone with this, I asked if there were any follow ups in the months/years ahead, such as scans or blood tests to keep a track of any progression but was told 'not really'. My local breast care nurses work as a team and are very busy. I have never been given a named nurse as is always stated so I dont know who to speak to.
Hi Nearhorizons20a240 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
It sounds like a very difficult time for you right now and although you haven't been given a specific nurse as your point of contact, it doesn't mean that you can't phone and speak to one of the breast cancer nurses. I did have a named nurse, but when I needed to speak to someone I would leave a message on the BCN's phone and whichever one of them was next free they would then return my call. Your nurses might be very busy but part of their job is supporting patients like you.
The online community is divided into different support groups so I'm going to recommend that you join the breast cancer group as you'll then connect directly with others who may be in the same position as you re taking medication.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
