Treatment of Metastatic RCC

Where were metastatic lesions? Only in liver and adrenal? Any pathology results with regards grade or sarcomatoid / rhabdoid?

I was PT3a stage 4 clear cell, sarcomatoid.

i had lesions on my left lung which disappeared over time, whilst the other two continued to grow but biggest jump has been in last three months from 3.5 cm to 4.3cm.  Adrenal gland at 2.8cm

I’ve been on immunotherapy since my surgery 20 months ago with a break due to a severe reaction. Maybe this will be offered?i hade huge mets in my abdominal cavity and the drugs have gone wonders! Awaiting my 4th PET scan tomorrow to see if things still good

Hi Mistoff

Glad to hear immunotherapy is working wonders.  Do you mind me asking if you knew about the mets in your abdomen when you had your surgery? I am waiting for surgery, they think mine is still within the kidney but I'm terrified of it spreading since my scan.

You won’t really know until the pathology report- after all your specimen is looked at in the lab. Mine was supposedly contained and I went on to pembrolizamub 3 months after surgery. Unfortunately I had a very unusual reaction to drug ( inflammatory arthritis in neck) and it took some time to diagnose it so was off treatment for 6 months. During this time I grew big tumours in my abdominal cavity only. The two drugs theyve throw at me have worked so very well so far- shrinking all my tumours completely. 
I think we have to accept each stage as we understand it. Before surgery my tumour was huge and surgery difficult- I was very concerned but it wasn’t helped by my knowledge! I had been a theatre nurse all my working life so understood it all, which is not good as one gets it all out of perspective.they began endescopcally but had to open me up towards the end as I was difficult so recovery time was longer.

i would say we have no choice but to go along with it all, but you must admire your clinicians. I have a really super oncologist and he shows me my reports because he knows I understand them. I don’t think they are allowed to just hand them out. I ask about my life expectancy because I want to know. He is truthful and made me decide on further treatment. Don’t be afraid to ask but try to understand what you are asking if you know what I mean. if you don’t want to know don’t ask but that’s not me.
That way you’ll understand. Don’t read rubbish, just stick to the cancer guidelines sites, unless you know what you are looking at. Most papers on the web are OLD stuff and out of date.

my advice would be to stop worrying about things you have no control over. Take each step as patiently as you can-ha ha. I have had 18 months already that I would not have had, and many more to go. You will hopefully be just under surveillance if all good obut think you may be offered immunotherapy. Take it they know best. The research into these drugs is amazing with new ones coming on line all the time. My drugs cost £80k a year and have done incredible things . Not without some side effects but nothing like chemotherapy. Advice is impossible to give as one does not have access to the knowledge , I can only tell you how I’ve coped. If you are not happy with any decisions you are entitled to a second opinion remember. I have had two private appointments with other clinicians regarding other things semi related to my treatment, such as osteoarthritis which I have anyhow, as I was not happy with the NHS referral attitude.

im a bit nervous today as I’m having my fourth PET scan and these are a pain as I have to travel a long way and they take 1.5 hrs of time in the unit. I know the report tells my oncologist everything so I’ll find out next week how things are going. I just have to go with the flow as we can’t change things.

Thank you so much for sharing this with me Mistoff.  I hope your scan today went well.  It sounds like quite a long day with the travel time. 

My tumour is also huge but surprisingly they think it is contained.  All of the staff have been lovely but it has been nearly 12 weeks since my GP referred me and I still don't have a date for surgery or even whether it will be this year. When I was first referred there wasn't any pain but this has gradually being getting worse and I've got discomfort most of the time now. I'm no stranger to pain, but it's whether this is a sign of it spreading that worries me.  I have thought about borrowing money to get it done privately but it would cost thousands and if it has already spread then I wouldn't have gained much.  You make a good point that not much more can be known until the pathology report.  Like you I ask for information because I do prefer to know and I find that easier, except I don't have your medical knowledge.  Thanks for your comments ... it really does help.

Great news that your mets have shrunk completely.  The price of those drugs is Eye watering.  In circumstances like these we are so very lucky to have our NHS. 

I'll be thinking of you next week when you go for your results.

Hi MaryH

Sorry to hear that you have had a jump in the size of your lesions.  The treatments that are available do sound positive.

I don't have any experience to share but wanted to wish you all the best for your upcoming appointment, especially as I have slightly hijacked your post.  

My medical knowledge is very limited but is it worth asking the question about further surgery?  Perhaps this isn't a possibility and I'm naive.  Might be worth trying one of the helplines to get some additional perspectives.  I also wondered if you'd seen the recent webcast on the Kidney cancer Uk website ... there was a medic who talked about different drug treatments followed by Q&A.  It was all a bit ahead of my stage but I thought it was really interesting and informative.  It might help you gather thoughts and questions.  Let me know if you need any help finding it.

Take Care 

tinkerbelle38 Thanks for your thoughts.  I have prepared a list of questions to ask the consultant tomorrow and I have also primed my sister who is coming with me. She had bowel cancer many years ago so appreciates how it feels waiting to be told results.

I’ll report back how I got on.  Fingers crossed.

Hope it all goes well.  Glad your sister is primed and will be there to support you.  I'll be thinking of you tomorrow.

I know, waiting is the very worst time. I had to wait 94 days for surgery which is very bad. I only had it then because I made such a fuss. It should be no more than 60 days I think. It was a dreadful time but forgotten now. These cancers are very slow growing so don’t get too distressed, I did and it doesn’t help.

most surprising thing was lack of symptoms. The only ones I had was beginning to feel tired in early evenings and then a sudden weight loss of 10kg in about a month or so, absolutely no other ones. My kidney tumour was 13cm X 15 and never felt it until the end, but not sure whether this was my imagination. A silent disease sometimes.

take note- don’t discard old clothes if you lose weight, you’ll soon be back in them when you recover. I rather liked being skinny. One has to make light of some things. Worst at moment is deciding what to eat as I’m so fussy. I used to love everything and eat masses, now I’m very picky . I used to scorn rice cakes when my grandchildren were given them, now I love them- how is that.

yesterdays scan was cancelled after I’d had the injection, their machines broke down again- I was meant to have it on Saturday but they had breakdowns, and cancelled me , then again yesterday it happened when I was there. 6 hrs wasted but not their fault. I just think what else I could do with 6 hrs in lovely Cheltenham!!