Burning pain to side of scapular post several breast ops - anyone have this too?

[DJK99]

Dear all

Hope you are doing as well as can be.

I am really struggling with very bad, deep burning in the area of my upper left back, in-between the shoulder blade and my spine and wondered if anyone else has had this issue post surgery/ies?

I have a lot of lumps and spasmed areas anyway, all over my body due to connective tissue disease, sjogrens, inflammatory arthritis etc, so am having a lot of massage and acupuncture but this really isn't helping, neither has increase in codeine, on top of my usual paracetamol and pregabalin. I have been on Letrozole for 2.5mths which made it much worse, hence I started having the massages etc again (as it never helped previously so had stopped going two years ago) so have had to stop taking it for a while, to allow me to manage my ADL's, as I live alone.

I have begun to wonder if it is due to the 5 ops I've had on the same side at the front, of course, ie lumpectomy and 2 axilla removed in 2019, radical mastectomy in Sept 2020 (9inches from chest bone to underarm), lumpectomy in 2021, lumpectomy in 2022 and larger area taken (5inches x 2 inches) along mastectomy scar line in March 2023. I had quite small boobs, but I'm wondering if all the cutting and healing scar tissue has affected my musculoskeletal system right around to my back - it wouldn't be surprising.. but it's pretty unbearable if standing to do things for even a short amount of time, especially as it gets later and earlier in the morning - as this is when I'm doing the washing up and I notice it unbearably there.

The masseurs/acupunturists etc don't really know what it is. GP has just said it's inflammation in the tissues.. but it's really very distinctly unlike anything else I have going on in my poor painful bod.. I've done a lot of googling of medical research papers etc, but still found anything I'm happy to stop thinking about it for.. not that it will let me!!

Here's hoping you can help.

Best wishes to you all and thanks.

D

[NPmary]

Burning pain is usually nerve pain. I have burning pain in my scapula bone, spine and sometimes muscles. Also muscle spasms. I do have cancer in one scapula , some muscles and thruout the spine. When l get mine it doesn't last too very long, the muscle spasms can last long. It seems it can be brought on by certain movements like wxtending my arm. I do take gabapentin for neuropathy and it has helped the arms and shoulders. I could increase the dose but l don't want too. Other things that help, knowing the burning pain doesn't stay too long, using a muscle relaxant for spasms, using a cold pack for pain, using a heating pad (infared) for pain. I don't know if that's helpful I l at all. Let us know how you are, please and if you find any relief. My thanks to the person on this board who recommended the infared heating pad it really has been a comfort. 🌺

[DJK99 in reply to NPmary]

Thanks very much NPmary. You have a lot going on there, so sorry. I will definitely look into the heat pads again. I did start looking at massage tools but read in this sort of case it might not help, possibly hinder, but heat pads I've not tried.. as it is already seemingly burning hot in its pain symptom. Best wishes to you, D

[Denzie]

what you describe sounds a lot like neuropathy. During one of the surgeries a nerve likely got knicked. Ask your doctor if the pregabalin might be switched for gabapentin.

[DJK99 in reply to Denzie]

Thanks Denzie - will do!

[jolo777]

On Letrozole about 8 months and I hate it as I have had bone and muscle pain and anxiety. I am taking anxiety meds now and advil pm to help sleep. hot flashes are minimal. Still better than Tamoxifen which I took 13 years ago when I had my first breast cancer.

[DJK99 in reply to jolo777]

Hey Jolo777 - v sorry it's awful for you too.. I think it's par for the course from everyone who has posted about it.. but it's a matter of degree, like all things, and how much each of us can stand - plus, of course, the family and partner support etc etc. For me, I couldn't look after myself and was just potentiating the 24/7 stuff I deal with anyway with all my other conditions..

I was on Tamoxifen first time around in 2019 but it made my life long neutropenia worse (and potentiated the methotrexate effect which also makes white blood cells lower) so I had to come off it as was open to infection, and utterly exhausted the whole time.. I mean, no energy at all.. again, I couldn't look after myself properly and certainly couldn't work although I was getting that way anyway due to my other stuff.

So. I've already asked my oncologist via emails to my MacMillan Nurse if I could try another option, and he's clearly not been given the info that I've actually had to stop the letrozole as I just couldn't function, as has declined to put me on the last option open to me thinking I'm still battling on letrozole. I see him on 15th May so will discuss with him then. It's called Exemestane and I found out about it via another blog with someone stating it was much easier on them than the letrozole. Here's hoping.. maybe you could talk to your oncologist about trying it?

[MFR4life]

Not sure if you will see this, but please go to myofascialrelease.com to read about the benefits of this type of therapy. Then. you can search mfrtherapists.com to find a therapist near you, hopefully. I've seen many people with various kinds of pain after breast cancer surgery who have been helped by MFR!

[DJK99 in reply to MFR4life]

Hey thanks so much for your reply MFR4life.

It was the Letrozole... well, that and 4 prior huge goes at my body with surgery in same places.. So I came off it, as for someone with Lupus, sjogrens, osteoporosis, heart disease, severe pancreatitis, stage 3 CKD and inflammatory arthritis allover... well, it was a step too far. It wasn't living.. utterly awful pain and even more exhausted... and I'm a v independent person. I had a lot of acupuncture and massages... but then I had an full blown 45mins MRI which showed my whole spine and hips were in a v bad way too with severe disc degeneration, bone marrow oedema, and quite bad bursitis and tendonitis all over my hips., and parts of my mid back.. so I think it was fair enough. Once off the letrozole, well, I could manage. Not so good now, but been a year since.

But.. thanks so much... I will read up and see if it might help. I think about to find out about spread in a week's time.. as an ultrasound 1.5wks ago after me having a revelatory (in a bad way search around for the first time in many months showed 'highly suspicious" lymph nodes (had two biopsies then and there) and probable recurrences along the subcutaneous areas of the mastectomy scar. I'm high risk of DLBCL too, with the sjogrens.. and my mum passed with that. Got to hope.. always.

Thanks again.

All the best.

D

[MFR4life in reply to DJK99]

You have certainly be through A LOT. Sending you all my best wishes....