Return of Mum's Kidney Cancer - Lung Mets

rehm

Hello Everyone,

I'm just lost at sea a bit having received some news about my mum (70yr old in the UK) and need some advice.

To summarise current status:

- mum (70yrs) had CT scan and subsequent right kidney fully removed (adrenal gland not removed) in Nov 2018 and found to be grade II, pt3a, clear cell renal carcinoma at 4.7cm - no spread anywhere. All was looking great.

- 3 year scans were all clear. Next scan at 4 years 4 months from original operation, 14mm nodule found on left opposite adrenal gland and at least 10 small lung mets (biggest 8mm) and prominent 9mm mediastinal lymph node - all too small to biopsy safely. Nothing showed on a PET scan which isn't unusual for CRCC urologist said.

- As a result of the above, left adrenal gland removed robotically March 2023 and histology under microscope shows kidney cancer cells meaning lung mets are all likely cancerous

- Urologist doesn't think lung mets can be ablated or the lymph node removed, TKI and/or immunotherapy only option + that they may monitor rather than treat straight away as treatment side effects can be severe. Mum case to go to MDT meeting and mum to be passed to oncologist.

Where do I even begin with the oncologist? What should I be asking? What are the best treatments? Is ablation or surgery to remove the lymph node an option or even the right thing to do?

The urologist says its not the size or number of mets, it's the spread so they may choose to wait and monitor what happens with the small mets before mum having to take on the side effects of the drugs. Is that right thing to do or go full blast to elimate everything?

Is there any positivity in this in terms of time I may get with mum? I'm totally heart broken.

Thanks.

Deanie0916

Hi, so sorry for this news. I hope you get some good news for treatment options for your mum. Prayers for you both and your whole family. On a positive note, there are many of us here who are living good lives with treatment, some with just surveillance. I don't know how your mom is handling this or what she wants but you will know so much more info after you meet with the oncologist. You already have some great questions. You will get some great support and ideas here! Much love and strength to you all.

eug91

I'm sorry that you had to join us like this. It's shocking news and there's no easy way to deal with it, but there is absolutely reason to be positive. There have been many terrific advances in immunotherapy and treatment of RCC.

Hopefully more people will be able to chime in here. If you haven't already, check out the forum at smartpatients.com. There are several people there in a similar situation as your mother and are a great source of information on the various treatments, living with them, side-effects, etc.

scabledog

Sounds like a carbon copy of myself. Left Kidney removed October 2018 adrenal gland remains. Fast forward 3 years or so little spots started to show in my lungs too small to biopsy. Finally they got to 1.5cm (4 total at that size or there abouts) they did a lung biopsy (removed 2 of the 4) and there it was clear cell renal cell carcinoma. I too also have about 15-20 little small spots of 5mm or less all contained to the lungs. Only main difference is that I am 53 and she is 70. They recommended immunotherapy and I've been on it now for about 4 months. The cocktail includes Keytruda intravenously every three weeks and a pill called Lenvima every day. Just had my first scans and it was all good news. Of the two remaining larger ones one is completely gone already and the other went from 1.5cm to 6mm. All of the smaller ones either stayed the same and many of those shrunk. All in all pretty pleased considering this is the first scan out of the gate... To add to this I have a friend who is taking the same type of immunotherapy and they are having similar shrinkage results with kidney cancer metastasis. So you can say I am definitely a fan of the immunotherapy.

Not going to sugar coat it but the side effects of immunotherapy can be intense, but all in all I would take it again and again. The doctors make a big deal of your current health and the how the side effects play a role. In my case I was in good health other than a bit overweight and some high blood pressure which was controlled well. I think the poorer your health the chances for good outcomes reduces.... not a medical opinion just my observation based on the millions of questions they ask. I would definitely push on the immunotherapy as the response rate is way up from legacy kidney cancer therapies. You can find more by searching kidney cancer and immunotherapy on "you tube". Lots of good medical videos and real life stories and outcomes. If you want to get a feel for the side effects you can look the medicines Keytruda, Lenvima, or Inlyta and you will see the full list. Don't get too scared about it because the list of side effects is daunting, but I've only experienced a few of them and so has my friend. Not making light of them because they are super annoying at times, but I can still work full time and do just about everything I've always done.

Sorry for rambling, but don't lose hope... I've been told these new immunotherapy medicines (by the doctors) are game changers in kidney cancer treatment and are giving people life and hope like never before. So far for me it is working and I never expected the first scan results to be as good as they were.... Good luck with everything.