New User - RCC

paulb1912468783 23 days ago

2 replies
77 subscribers
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New user. Got diagnosed with RCC last June and had left nephrectomy in July 24.

I was diagnosed thanks to an ultrasound in my groin area looking for issues down below. The nurse who did the U/S decided to check my kidney region and thankfully she did. I had no symptoms beforehand apart from a sore side, which I didnt know was cancer.

I had a successful operation at QEUH in Glasgow but was told it was very aggressive and had a 65% chance of coming back. They started me on immunotherapy in Oct and so far it has stayed away. However I have now had one of the rarest side affects of immuno out there where it has caused my heart and lungs to accumulate liquid(effusions) in the lining. Just came out of the hospital after 4 weeks, trying to find the cause and it appears it is immunorelated. Apparently, there is only about 3 reported cases of this happening worldwide.

Since finding out about the cancer I have been pretty upbeat in terms of coping with it. I am still pretty upbeat even though the latest news doesn't seem too good.

Puddock 22 days ago

Hello Paul

I'm sorry you have to find yourself here, but welcome to this forum! i hope you'll find many supportive and empathetic friends to help you.

Your post resonated with me, as I have had a very rare side effect from the immunotherapy treatment too. In my case, my immune system attacked my pituitary gland, so it no longer communicates with my adrenal glands. This happened two and a half years ago, so I am now used to the medication routine I have to live on....but it has not been easy at times. If you click on my name, you can read about this in more detail if you want.

Your side effect sounds like it may be painful for you....I hope you are managing OK. Are you getting any treatment for this? Will it sort itself out? Some of these rarer side effects are temporary.

I've found that the problem with having a rare side effect is finding an experienced specialist to deal with it. There are very few people with my side effect in the UK, and I would love to meet up with them and chat about how to manage the condition...it can be isolating!

But you are in the best hospital in Scotland, with an excellent endocrinology team! I'm hoping my GP can get me a referral to Glasgow too.

I hope your condition improves soon, and you are able to manage. Sending you virtual hugs!

Kate

paulb1912468783 22 days ago in reply to Puddock

So sorry to hear of your issues with the immunotherapy.

They have me on steroids just now but coming off them and started on mycophenolate and some other meds. Being monitored very closely over next few months.

They have said I won't go back on Immuno again. So far the cancer hasn't returned and hopefully it won't. They also did a MRI on my legs to check if it has messed up my muscles etc.

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