Haven't posted for a while but looking to tap into the knowledge of ladies suffering with late effects of treatment.
Brief history of what's been going on:
After a shakey couple of weeks at the end of 2013, I had a good scan in Jan 14 and was currently clear of cancer, things have been reasonably ok since then with 3 monthly check-ups had a few issues with pubic bone lymphedema,stiff hips and spotting after dilation but overall on the mend.
Beginning of Oct 14 I started to suffer with bad right shoulder pain which has been very painful at times and my hip bones seemed a bit stiffer than normal along with a painful tailbone, rang my CNS who then spoke to my oncologist and it was decided to do a CT scan to give me some reassurance even though they were not expecting anything to show up, happened to be seeing my oncologist at the beginning of Nov so timing was great. As they expected nothing showed up on the CT "unremarkable" as my oncologist likes to say and internal exam was the same as before. GP and oncologist thought the shoulder might be damaged rotational cuff, and the hips just post tratment damage, oncologist organised a MRI scan to check pelvis etc for any hairline fractures as they are now offering that post treatment at my hospital and said she would also get them to do my shoulder so I wouldn't have to go through GP, Ortho etc, had MRI last week and on Friday had a phone call from my oncologist to tell me something had shown up on the MRI and that she was arranging a PET CT scan. Apparently my bone marrow looks a bit different, not quite right in my pelvis and shoulder and she says they are not sure what it is, the radioologists are consulting with others and they are hoping the PET scan will shed more light. Had my PET CT yesterday and now I have to wait and it is stressing me out, oh and in the mean time I have had a similar pain in my ankle but this now seems to have gone. Feel more anxious about this than when I was first diagnosed, google is getting the better of me and my brain is doing overtime!!! Yes I know I have to wait and speak to the doctors but I am worried this time.
Hello Naomi - I know what you're going through, I've a similar thing going on at the moment. Started with pain in the hips & progressed through my pelvis & now back in the hips and new pain coming from the kidney area. Standard xrays of chest & hips showed nothing, Dexa scan showed no fractures so now having mri this week to have a 'closer look' as the oncologist put it.
My mind is doing overtime, very down about it, & can't convince myself that nothings wrong - I fear the worst I can't move forwrd until I get to the bottom of it, one way or another I need to know.
I did see your posts about your pain, sorry to hear it is still not resolved, hopefully once you have had your mri you will get answers.
I think that is sometimes the hardest thing, just waiting, once we know what it is we are able to work with it. I am totally confused by what's going on as my lymph nodes are all good yet my bone marrow doesn't look "normal" , my pelvic area I can understand maybe issues but why my shoulder, so then I start thinking has it spread to my bones?, can it do that? Hopefully we will get answers in the next few days and both know what we are dealing with.
The waiting and not knowing is just dreadful isn't it. I wish there were some way to measure the distress caused by it, then maybe everything would happen more quickly! And I'm also quite sure that the anxiety makes us feel every single ache and pain more than we would otherwise. I hope your PET scan gets to the bottom of it. And good luck to you Sharon with yours as well.
Hi Naomi hope you got some results by now, the waiting is what seems to 'do' us all in. All the best for you too Sharon!! Wish I could take this horrible disease away from all the ladies, to never return!!!! Salma
I often think about you, being diagnosed at roughly the same time I wonder how you are getting on. I really hope they managed to get to the bottom of your issues.
