I am new here: Hi there. I have been following... - My Ovacome

My Ovacome

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Janetmargaret profile image
6 Replies

Hi there. I have been following the posts on here since I was diagnosed last September with OC. I had stage 1c1 clear cell, I had the radical hysterectomy, and lymph nodes removed etc. Due to my cycst rupturing during surgery last August I was then started last September on chemo due to the cancer being clear cell. I have read that it is quite unusual for OC to be found at such an early stage so I do fully understand how blessed I have been. I have had quite a few CT scans since and my last scan did not raise any alarms. However I have noticed since my chemo I have had pain in my joints, particularly my arms and what I can only describe as a dull ache and smarting pain in my arms and fingers. I saw my GP and due to some swelling on an old injury on my ankle which was over 12 years ago she has arranged for a bone scan. I just can't help but think it is an overreaction and the pain could be due to neuropathy which I have read is quite common. I have been tested for fibromyalgia and arthritis,both of which have been ruled out. Has anyone any thoughts? I sailed through the operation and was fine with the chemo but I am not relishing the prospects of the nuclear scanner😏

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Janetmargaret
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HogwartsDK profile image
HogwartsDK

Hello Janetmargaret,

I had almost the same diagnosis as you except mine was not clear cell but high grade so treated the same. I too am very grateful for having mine diagnosed so early and finished chemo at the end of March last year. I too had the same sore bones and muscles for months afterwards and happened to fall and break my wrist which prompted them to order a bone scan. I don't think the Dexa scan has very much radiation involved as the radiographer stays in the room with you. It turns out that I am borderline osteopenia and I am convinced that it was the chemo that did it. I am now on a Calcium and Vit D supplement permanently! Chemo can do serious things to your body so I think they are doing the right thing, if they find your bone density is low there are things they can do to help strengthen them to stop them from getting any worse. But at the end of the day it is your decision and don't do anything you are uncomfortable with. I also started taking Tumeric which I found really helped with the bone and muscle ache.

Best of luck with the decision making!

Dx

Janetmargaret profile image
Janetmargaret in reply to HogwartsDK

OK. Thanks for that. In the grand scheme of things it does seem trivial but it's getting to the point now where even picking up light objects is extremely painful. But I won't give in ☺

maybe your gp would opt for an mri or dexa scan which isnt that bad on the system??? It could be neuropathy. Try some acupuncture with Macmillan or Penny Brohns centre, it does help you. My gp would be like yours very proactive which can be a bit of a pain at times

Janetmargaret profile image
Janetmargaret in reply to

Yes I think she is proactive. She was the GP who initiated my scan last July which revealed the OC. What surprised me was the reaction of the registrar during my follow up appointment who completely dismissed neuropathy with having any connection to my chemo! I now know that to be incorrect. I do push through but it's getting worse so I will get in touch with Macmillan . Thank you ☺

Nicky100 profile image
Nicky100

Hi there and welcome to our funny family.

Sorry you are here but you are among lovely ladies here.

To answer your question, I had a similar reaction in bones and joints. Some days it was so painful I could barely lift a kettle.

An oncologist said it was ‘simply the menopause’ and there was nothing I could do. I could not help but think it was damage done by chemo and something I did not want to live with as it was painful.

I’ve found a few supplements that really help plus lately LDN has made a difference and the joint pain is subsiding. Cyrcumin and Boswellia Serrata really help too.

I think chemo does more damage than they care to admit and I hope that you get it sorted.

Nicky xxx

BJ_UK profile image
BJ_UK

Hi, JM, and welcome to our crew.

I was diagnosed at stage 1a and therefore did not need chemo, but have nonetheless had problems with my joints since. Most of these are down to osteoarthritis, but your description of your hand pain does make me wonder if anyone has considered carpal tunnel syndrome. I have recently been diagnosed with this and told that my symptoms are absolutely classic: I have little normal sensation in my index finger and middle finger, and one side each of my ring finger and thumb are also affected. In my case only one hand is affected so far, but my mother and sister have had it in both hands. It is caused by swelling in the tissues in your wrist around the tendons and nerves that serve those digits, which apparently go through a bit of a bottleneck called the carpal tunnel which doesn't have enough room to cope with any swelling worth speaking of. I've been given a wrist splint to wear when sleeping. If that doesn't work they can do a small operation on your wrist to make a bit more space. My sister is awaiting this op now, and it certainly did the trick for my mother.

I think the bone scan you are referring to is likely to be a dexa scan, which is actually much less scary than either a CT scan or an MRI. It's also over a lot more quickly. I've had 2 so far, 10 years apart, as my mother had severe osteoporosis, which means that I am at higher than usual risk of this myself. Happily it's been good news for me so far, and it's certainly worth finding out, as the sooner osteoporosis is treated the better the results.

Hope you get your pain sorted soonest!

Barbara

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