What do I do?

Life after a breast cancer diagnosis Coping with fear and anxiety
1

Hello, I’ve come back on here tonight after some months as just feel I need to talk to someone who understands.

I had a mastectomy in August 2019, followed by chemo and radiotherapy which finished in April 2020 when of course, we were all in lockdown. I had severe radiotherapy burns which meant I couldn’t wear a bra / prosthesis for many months but thankfully it did eventually heal. Now though I have really bad pain in my ribs at front / side on mastectomy site. I’m scared it could be cancer rearing it’s ugly head again but then I think I’m paranoid. Since treatment finished, particularly in the last few months I have been getting worsening headaches and bone pain. I do suffer with joint problems and am a wheelchair user but this is different pain though Doctors don’t seem to be listening to everything I’m trying to say. They did arrange a brain scan (which thankfully was clear), when I eventually managed to get to speak to a Doctor but didn’t check out the bone pains at all and now I don’t know what to do. I don’t feel I can keep contacting the GP especially as I can’t get to see a Doctor anyway. I am totally exhausted and just don’t feel well. 
today I had to go for my regular Zolandronic Acid infusion and spoke to the chemo nurse who phoned a nurse in clinic. As they were busy they advised I went back through my GP - Ia explained I can’t get an appointment so they tried phoning my GP but gave up after waiting for them to answer for over 20minutes and advised I ring them later. Anyway they must have contacted the breast care nurse after I left the hospital as they phoned me later. They advised the radiotherapy May have caused micro fractures of the ribs which will be ongoing and try taking an anti inflammatory like Ibuprofen. I’m still so unsure as seem to be being treated blindly  and it’s not done anything to ease my fears. It also means I can’t wear my prosthesis due to the pain so feel a mess and totally unattractive, not helped by the fact, that after losing 6 and half stone and keeping it off for over 3 years, I’ve  put some of the weight back on since being on Anastrazole. I’m trying hard to lose it again but it’s proving almost impossible.

im sorry for such a long post and know I’m probably just paranoid but after losing my Dad and brother to cancer recently it’s hard to feel positive when I have no proof that the cancer is not to blame for the symptoms I have. I know they don’t like doing more scans than necessary but I so wish they still did full body scans each year, for up to 5 years, to give people peace of mind and an opportunity to move on and ‘live’ life. Xx

2

Dear Shana,

Firstly please don’t worry about contacting GP, Breast cancer nurses, you have been through so much and need answers as to why you are so uncomfortable, you have lost family members to cancer very recently, no wonder you are very concerned.

 I would suggested, tomorrow morning you call the nurses on this site, who are so caring they will be able to advise you what road to go down. I have always found great relief after a good chat with these wonderful nurses.

Wishes you well big hug from me to you Tili :rainbow:

3

Hi Shands

Just noted this other post from you, so now have a much better understanding of why you are struggling. I got my (your) previous posts mixed up. I’ve included a link below, from Jaybro on the Life After Cancer" thread. She’s a longstanding BNC supporter, and has quoted this link many a time to others. It’s excellent. But now I know your current problems, it may only serve to help “calm” a few of your fears, as it’s more for after treatment has finished.

I understand you feeling you may be being “paranoid”, but to me, it doesn’t sound as though you ARE, if you’re feeling sooo unwell and . . . . with tender ribs. Understandably “worried” about your rib pain, what’s causing it, immediately and naturally connecting to possible further cancer. Plus horribly frustrated that you don’t seem to be being “heard”!!

You didn’t say “why” you were given a brain scan?? But yes, at least you know all’s clear there :slightly_smiling_face: ! What I’m reeally not understanding, is why you haven’t yet been offered a chest scan (or X-ray?) to check out your rib problem?!! Is that because they think your pain is due to the Zolandronic Acid? And why told to get back to your GP??? as opposed to being referred to your Oncologist, or BCN even, who can then speak directly to your Oncologist??? Surely you are still in the Onco team’s care, not your GP, as you are still receiving chemo infusions? 

If you haven’t done already, I would speak to your BCN, ask/request that she speaks about your problems directly to your Oncologist. Or ask to see/speak to your Oncologist, so you can speak directly to him yourself.

I sooo hope you get some direct “action”, Shands, rather than being and feeling somewhat fobbed off.

An “aside” - Are you a wheelchair user due to some form of Arthritis, prior to BC? Or due to something else??

workingwithcancposer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what…

I’m sooo sorry to hear about you losing your Dad and your brother. That’s EXTRA hard for you, on top of all this as well.

Sending you lots of love, and an extra BIG Delly (((hug)))  xXXx

4

Hi Shands 

You have some sound advice already but I wanted to add something from my personal experience. Ibuprofen may touch the kind of pain you describe but there are three meds your GP can prescribe (or the hospital can initially and then pass the responsibility to your GP). Amitryptiline is the most effective but needs to be monitored if your health is not good. I had it when I had intercostal chondriitis (severe rib pain) but it had some weird effect on my heart rhythm so it was stopped.

Gabapentin is the next in terms of pain relief. My GP prescribed it for the long term neuropathic pain caused by radiotherapy on my breast muscle area. This didn’t quite suit me so I was moved onto Pregabalin. I found this least effective BUT the effect on my anxiety levels was remarkable so my GP has left me on it for as long as I like. Tbh I don’t like medication, especially long term but the absence of anxiety that has plagued me since I was 15 is too precious to give up, especially now I have a new diagnosis.

The biphosphonate treatment (Zometa, zoledronic acid) in itself can cause bone pain but the benefits in protecting bone marrow usually outweighs the downside.

A lot of us dread BC rearing its ugly head again. If that is your fear, you really must tell your oncology team. They may want to check things out just in case. A CT scan or a bone scan will show you there’s nothing in your bones.  I never thought about it myself. I knew I was high risk and decided whatever was going to happen would happen and it wasn’t in my power to change that so there was no point worrying - the power of pregabalin lol.

The breast care team is there to support you indefinitely so be assertive about what your fears are, how it’s impacting your daily life and what you’ve learned others have been offered in similar situations. They do care and should arrange something further to ease your concerns.

Wishing you all the best xx