Early fifties previously fit fella (handful of marathons and ultras) married to my Angel of a wife for >25yrs. We have two grown up children who have not yet flown the nest. Diagnosed with a kidney tumour in Aug 24 after blood and clots from my bladder and a CT scan. whirlwind period followed with surgery in late August.
Radical nephrectomy of right kidney with tumour extending into inferior vena cava requiring super-programmatic cabal control. In English, Open surgery along with having my chest cracked open as it was thought I would need to go on bypass but tumour had not reached my heart. Left with my great white bite scar from top of breast bone to right hip. Stitches and 59 staples which were removed after two weeks.
My tumour histology was pT3b(75mm) grade2 focal grade3 clear cell carcinoma.Leibovich score 6.
Update: First post op CT scan 4th Oct. Other than shallow fluid within the right renal bed no evidence of recurrence of metastatic disease. Offered adjuvant treatment with Pembrolizumab but concerned about side effects for small benefit.
Have declined offer of immunotherapy treatment and sticking with 3 month BY monitoring.
Feels odd replying to my own post but I guess I really was hoping for thoughts and advice from others on immunotherapy treatment. Obviously my decision but struggling with making it and wondered if others were the same? Feel like I am making slow but steady progress with recovery from surgery ( working again, walking 5 miles) and worried treatment will set me back physically to feeling rubbish or exhausted all the time.
Hi Rustyfish and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.
I'm not a member of this group but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
I was advised not to have immunotherapy until I needed it as side effects could be bad. I am on what they call active surveillance and have a CT scan every three months to monitor my slowly growing metastatic lesions on my liver and adrenal gland. I had my right kidney removed almost five years ago (tumour discovered purely by chance). I struggle with lack of information and have had to insist on getting the measurements of my lesions as they grow. I’ve asked what size the lesions will have to grow to before I am offered any treatment but that is always fudged. I don’t see a doctor - I have telephone calls with a specialist nurse.
If you are feeling ok it seems you are better to postpone the immunotherapy- best of luck.
Thanks so much for your reply Mary.
Interesting you were "advised" as have heard that from someone else. My surgeon in follow up said they felt immunotherapy would come with more risk than benefit but my oncologist was not prepared to commit when I asked if he would accept treatment. sorry to hear about your lesions and the lack of support you seem to be encountering. Kidney tumours always seem to be discovered by chance, mine too. Did you not have your adrenal removed at the same time or is this the other side? Wishing you all the best.
Apparently at the time of my kidney removal the adrenal gland was clear. My surgeon assured me that he’d got “everything”. Unfortunately two years later the lesions started to appear. I had an excellent oncologist who explained everything in detail but then transferred to my new oncologist who it feels like pulling teeth to get information from. I’m no shrinking violet. I was with my husband through his years of treatment and eventual death from mesothelioma. Living on my own I need to know what to expect.
Hi Rustyfish
Sorry to hear of your journey so far . I just wanted to say that I’m in a similar situation to you ( radical nephrectomy in April ) I’m on my 3rd infusion of 9 of pembro and am finding it not too bad at all ! Only minor side effects and none that are debilitating so far ! I just wanted to let you know my perspective on it is so faris all positive. Please feel free to ask me anything you’re confused or concerned about .
Badass Bitch
Sorry to hear your oncologist experience has deteriorated Mary. I don't think mine is withholding any info just not being drawn on what he thinks is best course of action. Sorry to hear about the loss of your husband and hope you are not facing this alone. I am lucky to have a big support group of family, friends and colleagues. Take care.
Thanks for the reply Badass bitch and so pleased to hear your treatment is going well. Just concerned I guess that the relative % gains seem quite small and scared of the possibility of doing further harm to my remaining organs. All the side effects seem to come with steroid treatment, has that been your experience? Kind regards
Interesting posts. Kidney cancer treatment has been so behind. Many other types offer all sorts of adjuvant treatment. But kidney people were just sent away after surgery. About 2 years ago adjuvant treatment was developed for KC. Lots on here went on it, but I'm amazed at the number of stories suggesting to give it a wide berth. Where as in Breast cancer, which really does have a pattern of over-treatment, they take chemo & its known side effects, for a tiny possibility of a benefit. I was on immunotherapy as a first line treatment, but not pembro. I just want to give it a positive shout! I wonder if some of the healthcare providers advising against it have no experience of it - it's too new?
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