Has anyone chosen not to have treatment?

Breast cancer now have a service called someone like me that may be able to put her in touch with a volunteer who chose not to have chemotherapy? X

Hi LMG98, sorry to hear of your mums diagnosis. I was triple positive and have been given the full works of surgery, chemo, radiotherapy, targeted treatment (Phesgo) and hormone treatment (tamoxifen). It is very much a personal choice as to whether one goes for treatment or not. I personally went for it all. Whilst I was concerned about allergic reactions I did read that docetaxel could cause permanent hair loss. However in all the reading I have done on here I have yet to find people that have suffered and not had it grow back. I believe the percentage is very small.  I cold capped throughout my treatment. I had EC first which is notorious for loosing hair even with cold capping. When I changed onto docetaxel it actually started growing back and I now have about 7cms of hair all over. Low white blood cells they counteract with filgrastim injections but yes your immune system is compromised whilst going through chemo. Unfortunately no one can say for certain whether having all the treatments will or won’t prevent cancer from returning. If one chooses not to have it then in a few years it could return and you could be thinking maybe it wouldn’t have if I had had all the treatments and vice versa, but one never will know for sure. I’m sure there are others who have been in the same position and can offer their help as to what they did if they chose not to have treatment.

Wishing your mum all the best in whatever decision she chooses.

Hugs from cuffcake x x x x x

My cancer was also her2 which responds well to the Herceptin which I don’t think they will give without the chemo. I had the same chemo regime that has been suggested to your mum 2 years ago now. I used the cold cap and didn’t loose my hair - it did thin but has come back as thick as ever. The chemo was tough but you get into a routine with each cycle so you begin to know what to expect and the drs and chemo unit look after you well. I went for everything I was offered because her2 can be an aggressive little blighter and our prognosis has improved greatly since we have been offered Herceptin. x

Hi Lucy, thank you for your response. She has been in touch with them and they told her that they do not have any volunteers who chose not to have treatment x

Hi Gilliebean, thank you for your response. She met with the oncologist for a 2nd time today and they will give her the Herceptin without chemo but not the Phesgo, which I feel has made her decision harder as I know how key the Herceptin is in targeting HER2 x

That’s interesting. I too was told no herceptin without chemo in 2021. I was er/pr negative. I think the outcomes for HER2 positive are better if you are hormone positive. Your consultant will be able to tell you if that’s true. It’s a difficult decision. Best of luck to your Mum xx. 

I can't help regarding chemo as I didn't require it but I notice you said your mother had severe anxiety.  My daughter has severe anxiety condition -OCD, and part of this is stressing over any illness.  Xmas day she fractured her elbow and a few days later told she needed surgery.  She was terrified as never had surgery, struggles with germs etc.  Her anxious mind her ask me doomsday scenarios including "will I lose my arm",  So my question is if your mother declines chemo will it make her anxiety worse as she worries she's made wrong choice?   I'm guessing no easy answer but it's one your mother her should consider.  Ps my daughter still has her arm ,