So, long-ish story. Diagnosed with primary ER positive breast cancer in 2023. Double wide mammoplasty, a node check (micro cells) and radiotherapy. No chemo as have other underlying health issues and oncology felt would be worse in side effects than benefit.
fast forward to this year, and build up of pain in side/back/pelvis which then got to breathing issues.
At work one day and A & E the next, where was scanned and told had massive build of fluid in chest, and metastatic secondary breast cancer.
Not the news you want, obviously.
Now am having a round of radio for pain, then starting Fri EC chemo and the bone therapy IV.
Guess main query is - what to expect? I’m going in thinking it’s going to be hell on earth. For anyone who has experienced, any good tips for managing. All very daunting. My pain levels are high, although on a heavy morphine regime. I’ve opted for no cold cap and will do head shave and wig.youngest is 13, so doing all this to buy as much time as possible. Any advice welcome and hugs to everyone else in this really horrid spot. Thanks in anticipation.
Hi Denmar9a34fa and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I’m Anne, one of the Community Champions here on the Online Community, and I had 3 cycles of EC for triple negative breast cancer and then 3 years of zoledronic acid. We're all different but, apart from losing my hair, I was lucky and didn't really suffer with side effects. I had my EC three weeks apart and would feel a bit under the weather for half of that time and then fine for the rest. I did find most food tasted very bland but if I ate spicy things like curries and chilli I could taste that.
I didn't cold cap and had my waist length hair cut to shoulder length and bought a wig and head coverings. Most of the time I wore the head coverings. I never completely lost my hair but when it was becoming obviously thin I got my husband to cut my hair to about 1cm all over using his hair clippers. I would be wary of shaving your head immediately as some people lose hardly any hair so it would be a shame to shave your head unnecessarily.
Once my chemo and radiotherapy were finished I then went on to 3 years of zoledronic acid to which I've had no side effects at all. I have the infusion every 6 months.
The online community is divided into different support groups so I'm going to recommend that you join the secondary breast cancer group as you'll then connect directly with others who have the same type of cancer as you.
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 proposed 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"
