Refusing treatment

Hi Eden 

I am sorry you feel so frightened and I totally understand how you feel.

I know of a lady on here who had the much "kinder" - by way of treatment -  oestrogen positive breast cancer, but refused treatment other than taking the tablets.  I had similar to her (no chemo. required) and my treatment finished 2 years ago (after 5 years).  Hers spread and she has since passed away.  I think I say this because breast cancer is so prevalent that the doctors do know what they are doing. Yes your treatment is awful but the preventative treatment is just that, without it you risk being in a much, much worse situation down the line.

If you are concerned about supporting yourself when undergoing treatment, do talk to your breast care nurse or speak to Macmillan and ask for some advice.0800 808 00 00.  7 days a week 8am - 8pm 

Kindest wishes, Lesley

Hi Eden,

I totally respect anyones decision not to have further treatment but I do just want to say I have the same breast cancer and at stage 3 with no further treatment the chances of it coming back are high, it is an aggressive cancer as you know but thankfully with chemo and the targeted drugs it has completely changed the outlook of her2 positive cancer and gives us the best possible chance. Yes chemo is hard but there are so many drugs to manage all the side effects it's not neary as daunting once you start, the thought of it is generally worse!! Lots of people carry on working and leading a fairly normal life and i imagine you will be on herceptin for 1 year, I have two more to go and haven't had any side effects it's just a quick trip into hospital every 3 weeks. I know it's your decision and I understand your fear but as lesleyhelen says if you don't have further treatment the situation could be a lot worse down the line. 

X

Thank you for replying. 

I guess no one can really give me the answer. I run a nursery so have been advised to stay away during chemo. The thought of losing hair and the effect it may have on my bones and oral health - never mind the rest is overwhelming me a lot. I guess everyone is different and no one can predict how will affect me but glad to hear you had very few symptoms 

Living alone is to my mind almost a positive when it comes to dealing with chemo. You can get yourself organised and have the time and space to just look after yourself.  I found being able to chat to friends on WhatsApp was as much social contact as I wanted for the first week to 10 days. After the first session you will have a good idea of how it affects you.  Keep notes and you will be better prepared for the next sessions.  Also you will have a breast care nurse at the end of the phone to answer any questions.  My cancer was much less aggressive than yours and I have just finished chemo.  I am glad I have given myself a lower percentage chance of recurrence.   Best wishes for your appointment. 

Hello. I know it’s frightening but see what they say at your appointment re what chemo drug you will be on/how many sessions etc then go away and do your research. 

I was so scared of chemo too but I took the info and did my research and I couldn’t believe what I found about each drug, what they actually did and how effective they were was very interesting. I said to the oncologist I would try it and if it made me too ill etc then I might not continue. She said that was fine and they would support me. (Mine was adjuvant like you). But here I am feeling ok having completed 10 out of 12 sessions of chemo. So please don’t just assume what it may be like without trying it. 

I had HER2 negative so not the same as you but from what I’ve heard about the treatment for her 2 positive is that the herceptin injections are fantastic and very effective. Apparently herceptin is the only drug effective against stem cells which is were recurrence grows from. 

In relation to your osteoporosis I believe there is a drug they can give you to protect your bones from damage. 

Thank you everyone. I really appreciate the support. Everyone is different but it helps to get advise from those that have been through it. And I have to say you’re all so positive! X

Hi Eden, 

I totally respect any decision you make. Using a cold cap will reduce hair loss. Chemo isn’t pleasant but without the recommended treatment there is a high chance your type of cancer would return. We are fortunate to live at a time when the treatments for breast cancer is so affective. I wish you well with whatever treatment you choose. 

Hi Eden

I had Her2+ cancer in 2019 , 3 tumours. I was told all were Her2+ but later after chemo, it was discovered my notes said one was hormone + (Oestrogen & progestin). I seemed to have treatment in a different order from you, ie chemo which should have then been followed by surgery and also Herceptin injections. My treatment was disrupted by the  Covid pandemic. Do feel free to read my profile. 

But in general, I wanted to say the chemo was bearable, although it has left me with some problems, eg some neuropathy in my feet and awful toenails. The thing that has caused me most distress is the hormone trte meant ie the aromatase medication, at first Letrozole and then exemestane. I put on weight and my osteoarthritis has been a lot worse, plus irritating menopausal symptoms such as flushes (at 75!!) . I am due to stop the aromatase inhibitor at the end of this month, and although looking forward to it, I am also nervous that I might get a recurrence, which won't be easily detectable because I had a double mastectomy. As far as I know, I don't have secondary cancer growing elsewhere. 

I don't regret having the chemo and the follow-up Herceptin injections were pretty easy. 

I don't know so much about the ongoing aromatase treatment, which for me was 5 years but I did stick with it and it is always something you can start and then drop.  They say even a little helps.

Also, make sure you get a blue badge if you have arthritis and put in for attendance allowance if you struggle and are over 65. I recently got it and can't think why I didn't apply earlier. I use some of it to pay for osteopathy and aqua exercise classes, both of which help my mobility.

Very good luck with what ever decision you finally make x

Thank you all for your help. I have seen the oncologist today and I am only having 6 chemo treatments first 3 are EC treatments , last 3 are docetaxel alongside Trasttuzumab then radiotherapy and letrozole.  Then zometa for thinning bones for 3 years. I’m thinking I may at least start the treatment to see how it affects me.