Hello;
I’m not sure if I’m posting in the right place but I’m looking for a little reassurance if possible? I can’t thank you enough for letting me offload here. I apologise for the lengthy essay I will no doubt end up typing.
I had stage 1b triple negative breast cancer in 2023. No lymph node involvement, great response to chemo- my tumour literally disappeared after the 2nd cycle and I had a mastectomy with reconstruction. I didn’t need radiotherapy due to negative lymph nodes. My chemotherapy was finished early due to a good response but also the more I had chemo the more I was being admitted into hospital with neutropenic sepsis- not fun! So my oncologist decided enough was enough.
I did 12 weeks of carbo/paclitaxel/Pembrolizumab and 2 cycles (6 weeks) of EC.
I was given the all clear in November 23’.
Since treatment finished I have suffered terribly with nerve pain and a bad back. I have had that many scans (post cancer) that I’ve lost count.. and in return I’ve sadly been diagnosed with PTSD due to the anxiety and stress. My scans have always come back clear which is great news but I have been told I have spondylosis of the spine, with degenerative wear and tear. My spinal consultant told me it was early onset osteoarthritis likely caused by chemo/ immunotherapy.
I had my yearly mammogram and breast MRI check up in October (24’) which was all fine but I mentioned to my surgeon that I was having a back pain flare up again. He ordered for me to have a nuclear SPEC CT bone scan (full body) to air on the side of caution and I had that in November 24’. This again came up clear with no issues other than what we already know about my arthritis.
Since December 20th (so 4/5weeks now) I have had terrible leg pain that feels like a trapped nerve going down the right side of my leg (bum to ankle) it’s relentless and keeping me awake at night! I haven’t injured myself so again it’s another flare up but now in my leg.
Given how bad my anxiety is, I have been in an absolute state of worry, constantly thinking about cancer, constantly worrying about reoccurrence. I haven’t slept properly for weeks and I’m really getting in hole about it.
My wonderful husband is losing the will to live with me as he just doesn’t understand why all my positive scans aren’t enough to reassure me that this is just my body now and not cancer! But i can’t seem to switch off and let the pain subside with time. I’m always fearing the worst and my most famous line “what if they’ve (doctors) got it all wrong” is becoming a constant phrase that keeps flying out of my mouth! I mean really! Highly paid professionals and they’ve got it wrong- I know myself it’s stupid for me to ever think but it’s just how my brain works now- it’s a constant fear.
Everyone I speak to tells me to calm down and reassure me that my November scan is enough. My physiotherapist said to me-
“You had the crème de la creme of all scans when it comes to bones, the tiniest of hot spots would have shown up on that scan! The pain you’re in at the moment would mean quite advanced bone cancer and that would have lit up like like Blackpool illuminations, be reassured that your scan from 2 months ago is clear, this is just sciatica”
In other words- stop worrying!
Is it silly of me to ask am I being ridiculous and anxiety riddled? Could the doctors have got it wrong and I’m actually covered in cancer?
I think about cancer all day,Everyday and it’s ruining my life! I also can’t accept my new body and how old I feel. I’m only 35 but I feel 105. My body just aches and hurts all the time. I had some wonderful macmillan counselling when I finished treatment but I was only able to have 6 sessions. I’ve been on the NhS waiting list for PTSD counselling for 6 months.
My previous back pain comes and goes and clears up after a fair few weeks. 12 weeks was the longest stint and then it disappeared. I can’t seem to think that this nerve issue/pain will go too.
I just need reassurance and support. Ideally give me a good shake and tell me to get on with my life!
Thank you so much for reading, I don’t expect a reply as I probably sound so ridiculous but I appreciate being able to vent. It means the world.
Lots of love
S x