Arthritis from chemo - Long term- Leg Pain

[BBmom91]

Hi everyone,

Just a little backstory-
I’m a 34 year old mom of two DS (aged 8 & 4). In 2023 I was diagnosed with breast cancer at stage 1, I had no lymph node involvement but still needed chemo for 6 months and a mastectomy.
2023 was one of the worst years of my life and I wish I could forget it ever happened.

I have been left with pretty bad aching joints and arthritis in my upper and lower spine plus my left knee. I have been suffering with my back for the last 18 months and have had MANY,many different scans but all have come back as wear and tear.

In November just gone (24’) I had a nuclear spec CT scan on my bones which came back clear.
Anyway, since December 20th (24’) I have been suffering with the most awful pain in my left leg. Starts from my bum and can lightning bolt all down my leg to my ankle all bloody day long! It is driving me absolutely nuts and I’m sick of taking ibuprofen. I have not had an injury or accident for this to happen. I’ve increased my hours at work so I’m on my feet for 8/9 hours a day. I’ve also gone back to the gym to build up muscle strength but swimming seems to have aggravated the leg even more so.

Because of what I’ve gone through my head instantly goes to cancer. The anxiety is so bad and is taking over my life! I’ve been on a 5 month waiting list for PTSD therapy and still waiting.

My DH has told me I need to stop worrying about my leg because all my scans are clear and up to date. He said because it was only 2 months ago that I had the nuclear bone scan that I would not be looking at cancer in my leg. The scan detects microscopic cancer cells and the pain I’m in he said if it was cancer a tumour or severe bone mets would be present which would have shown on the scan in November.

I think my doctors are quite frankly sick of me because of all the scans I’ve requested. I have been to see many since I finished cancer treatment and they can’t find a thing wrong with me other than arthritis and ptsd.

If you are reading my story, thank you for sticking with me.
Im just looking for reassurance really and logical explanations. Is all this crazy anxiety and do I need to be patient with my body? Or am I right to be worried even though I’ve had lots of scans?

Thanks so much xx

Have you had a biomechanical assessment to check your feet and pelvic alignment? It sounds like sciatica and may be completely unrelated to your chemo etc. I would suggest seeing a foot specialist first to see if you need orthotics then an osteopath to advise on the sciatica.

I have looked after patients post mastectomy and one of the things that can happen is that the weight imbalance can affect the way they stand and walk. This could be a significant factor for you. I completely understand your fears though.

Hi, thanks for your reply.
I don’t think I’ve had what you’ve suggested but if it helps I’ve had 2 full body MRI scans and a seperate spinal (cervical to lumbar) MRI then the SPEC CT . Nothing was picked up at all apart from degenerative wear and tear from treatment. I questioned what this meant and was told it was early onset osteoarthritis/spondylitis of sections T3,4,5,6 and the lumbar… plus arthritis in my left knee.
I have been seen my NHS and also paid privately to see a spine specialist.

I'm just at a complete loss, my body keeps failing me and making me believe I’m really ill but the professionals and my family can’t find anything (other than stated) wrong with me.

I feel like it’s all in my head, but the pain is most definitely there xx

My surgeon suggested I may have nerve damage as I did suffer from peripheral neuropathy during chemotherapy. He believes it can happen when tissue is taken from the breast during mastectomy surgery as some of the nerves from the breast are connected to the back. It’s called intercostal neuralgia. It can’t be proven that I have it unless I have surgery though- which I’m not going through again (if I can help it)

I did have a reconstruction at the time so I’m not too wonky but totally agree with what you’re suggesting xx

migjt be worth talking to GP about treatment for nerve damage.

Thanks for replying,
unfortunately I was told that I needed to have a period of 3 months of pain before anyone would treat the issue. My arthritis pain in my back comes and goes. The flare up can last 6/7 weeks then disappear for 4 months. They said severe pain from arthritis and nerve damage would be consistent for over 3 months.

To be honest, I’ve been left in the dark on how to treat it. It’s almost like they think “well you’ve had chemo so you’ve got to come out the back of it with something”

Chemo And immunotherapy also gave me thyroid disease and medical menopause (although periods have returned now but are all over the place) so I’m battling with that too. Xx

Biomechanical assessment is a physical exam done by a chiropodist or podiatrist type of specialist. It doesnt involve scans. They measure your legs, check your feet and observe how you stand and walk. Simple but useful.

Awww okay that is worth a look into thank you!

I guess I’m really just hoping from reading my post that someone will reassure me that all my scans would show this pain doesn’t connect to cancer and it’s something totally seperate. I know no one can diagnose me but it’s useful for my anxious brain to get clarification that scans are a good signand something as awful as cancer couldn’t just appear within a month and half (scan was end of November) of being told I’m okay. Xx

It could be sciatica. If you have suspected chemo induced peripheral neuropathy what operation do they want to do to diagnose this? I thought PN was dx'd by neuro conductive studies and electro myography. Small fiber neuropathy is diagnosed by a punch biopsy although there are a couple of other ways to diagnose it but the UK is somewhat behind on testing.

It is not crazy anxiety! You have been through a lot ! Hope you get some answers ♥️

Do go back to your GP and hassle. It is perfectly normal to worry about cancer after treatment and a check to rule it out will make you feel so much better. I guess it is unlikely if you had a check in November but you need reassurance. Go and get an appointment but dont feel you are being a nuisance!

Are you on any medication still for your breast cancer treatment? - many of these can cause bone pain so again a chat with your GP may be able to offer alternatives.

early onset osteoarthritis/spondylitis of sections T3,4,5,6 and the lumbar… plus arthritis in my left knee.
This. The pain down the leg sounds like sciatica. Anything back related can send pain down the leg.
I have arthritis in my spine and bulging discs and when it flares up I get pain down the leg.
I've also had breast cancer so I understand the worry but you have been thoroughly checked.
I would suggest seeing a physio for specific exercises. I finally found some that help.

2023 was rough for me too, I was treated for TNBC. Signed off by oncologist Jan 24, NED.

I sympathise and empathise. It’s hard not to rush to the conclusion that it’s recurred when symptoms present. However, the pain you describe does sound like sciatica, which is miserable, but usually resolves with time. I’ve had several episodes, and whereas there is always a physical cause I do know mine is exacerbated by stress and anxiety. So you’re in a double bind.

Agree with the suggestion of specialised physio, and maybe some gentle stretching.

Post treatment anxiety and trauma is real. Time, gentleness, kindness to yourself may help, and acceptance that post diagnosis and treatment life is not quite the same as it was before.