New treatment

4 replies
24 subscribers
188 views

Hold on to your seats, just when you think you know what's coming next.

Hi everyone, some may remember my last post was 3 months ago and I was having a break after chemo. (It was lovely a few trips away health permitting) Whilst on my break I thought I would look into finding a specialist in squamous cell carinoma of the kidney, for a second opinion given that my hospital was sort of winging it and given my previous history. As expected there are only a handful and ended up reaching out to the Royal Marsden. Once my treating hospital sent all the relevant paperwork, they sent me a letter to say they had looked at my biopsy results and said they weren't a 100% clear as to the type of kidney cancer.

So after several hundreds of pounds Royal Marsden confirmed that I have a poorly differentiated urothelial cancer. They were really helpful and armed with more information I took the plunged and went to my neighbouring towns hospital. (So lucky to be right on the boarder and parents live there) Now waiting on another scan and test results to find out next treatment, oh what fun this is I'm thinking of sending my story into the TV networks or maybe it becomes long enough to turn into a book.

As always any advice on atezolizumab immunotherapy greatly received take care.

Pepperpot 2 days ago

Hi Sweetpea21,

Wow that's quite a journey, I don't know much about Renal Ca but what I wanted to say is how much I admire your tenacity and resilience in getting RM to review your case.I must admit only today I was thinking I have next to zero rapport with my Consultant Oncologist and how I wished I could have someone I felt I was in partnership with.Im sure he's very bright and academic but he has no bedside manners or warmth so our meetings are rather disappointing.I stopped one of my Chemo drugs on Sunday as it was making me so ill.Today the hospital have made a new apt for me to see him next week...and like a child I felt he was going to " tell me off" ...this is what made me realise he's perhaps not the consultant for me.But RM is miles away.SO well done you for sticking to your guns.RESPECT.

Lizx

Sweet21Pea 2 days ago in reply to Pepperpot

Oh Liz I"m so sorry to hear this. Don't think you have no options, my palliative care nurse said once you have to be comfortable with your treatment worry is not good. Find someone to talk too, gp, Macmillan or you could talk to pals at the hospital.

Also look into private second opinions they are more reasonable than you think and most will do a written report or zoom call which is what I did with RM. I wish you well and please speak up.

Stella2020 2 days ago

Well done for seeking 2nd opinion from RM. I am glad you have moved your treatment to a different hospital. It is essential that you have confidence and feel comfortable with your clinical team. Best of luck with your new treatment. X

Coddfish 1 day ago

It must feel good to get a more specific diagnosis and a way forward through a new team. I don’t have experience of Atezolizumab, but I do have experience of a similar drug, Pembrolizumab, for a different cancer. Checkpoint inhibitors like these can often have really good results - mine has put me in remission. Wishing you all the best.