Secondary RCC in the lungs

Hi StefaniB, I'm sorry to hear your husband has been confirmed as metastatic.  I too was confirmed Stage 4 (in Jan this year, 19 months post-nephrectomy). I have two small nodules (one in left lung, one mediastinal - ie chest - lymph node). Do you know how many nodules your husband has - and are they only in the lungs? 

Being scared is normal at this point, but do take heart as there's really loads to be hopeful about, as your husband has picked up from his surgeon and nurse!  4mm is really tiny (my lung nodule grew from 5mm to 8mm then shrunk - with treatment - to 4mm and my oncologist says it is now so small that if they were not looking for it, they might miss it).  Also, 1mm growth is NOTHING! That's the difference between different radiologists doing the measuring, or - as someone told me - the difference between the same radiologist doing two readings with a cup of coffee in between :-).  It follows that 1mm in 4 months is not fast growth if it is growth at all.

I am on systemic treatment - Tivozanib, a targeted therapy know as a TKI (tyrosine kinase inhibitor).  Other TKIs are Sutent and Votrient but Tivo is the newest and allegedly has less toxicity/side effects. For me it's so far so good (if you search this forum for a thread with that drug name, you'll see a thread with my progress so I won't repeat it here). It's been so manageable that virtually no-one (most family members, friends nor neighbours) know that I have been living with Stage 4 for 7 months.  And living very well and normally, I would say. 

I wish your husband a speedy recovery from surgery.... do please keep us posted!

Hi

Thank you for your response.

I think there about 5 nodules between the two lungs.

with them being so small and where they are situated , the surgeon and nurse don’t think they will cause problems in that they aren’t need his windpipe etc. 

We know he’s never be cured, but we can cope with being on TKI’s.  Do they ever scan you and see no growth and take you off for a while?!? 

S x

Hi StefaniB, yes they often scan and see either no growth or even shrinkage (I have had both). I have had a one-week treatment ‘holiday’ In the first 5 months in addition to the normal week off per month which is part of the regular cycle.

5 nodules isn’t a lot and hopefully they will respond well to treatment. All the best!

I had a similar experience this year following my radical nefrectomy back in 2015. Two metastatic tumours in my lung, had my upper right lobe removed and thought that would buy me a few years without any reoccurance but 3 months later they found 2 more - the larger one was 4cm do very aggressive.  I've started a TiVo treatment and its been ok other than the effect on my blood pressure 

Hi Stefani

Sorry to hear about your husband. His story is almost identical to my husband's.

The cancer spread to his lungs, liver, renal bed and we recently found tumors on his spine. 

He is now on votrient for the past 4 months. He started radiation therapy last week and we are very hopeful.

His last scan in August showed shrinkage of the tumors.

My husband has been very positive through out this process. I on the other hand have been freaking out the whole time. 

We are also a young couple with 3 young children.

I have found this group a lot more informative and helpful than google. People here and their life stories have provided a lot of comfort to me. 

Wishing you both all the best.

Sending you a big hug.

Mpume  

Hi

Thanks for your message.

hubby is to have second round of immunatherapy therapy tomorrow and so far so good.

he did have symptoms of under active thyroid which we were warned about but he’s pushed through that and says he feels great which I am so proud of.

his last scan before treatment showed tiny dots suggesting more nodules but too tiny to measure and the largest of his nodules are just over 1cm

i just pray the treatment stops growth .

he’s been told he will have to continue the treatment for the rest of his life which I just think so long as he is still here I don’t care -selfish I know.

I’ve recently been diagnosed with poly cystic kidneys and liver so I’m just ready to see the back of this year.

hope your ok and the kids.  If you ever need to have a moan or chat feel free to get in touch 

Stef x

Hi guys I'm new too this don't know what I'm d0ing with this site. Iv just been told I have a 6cm growth. Am now awaiting remove of right kidney. Going through every emotion possible. Hoping to get through this ok

Hi Zacpaul,

You will of course get through it OK - many of us have!  Which hospital and when are you having surgery?  Are you having a total nephrectomy (the whole kidney removed) or partial (ie just the tumour?).  If the whole kidney is coming out, are you having it done laparaoscopically (ie keyhole) or open surgery?  Your tumour isn't huge - with 6cm I figure you are a Stage 2 (did they say what stage you are?).  I had a 9.7cm tumour, Stage 3 - and I've heard of much bigger - also on my right kidney, I had the entire kidney removed by keyhole surgery. 

Different people have different experiences of post-surgery recovery and it very much depends on which type of surgery you have. Open surgery requires longer recovery as well as a longer hospital stay.   I had a 2-night stay and was pretty much back to normal after a month.

Ditto the emotional responses, but try and stay positive.  

Any other questions, just ask!

Wishing you a successful surgery and recovery. 

Hi Joanne thank you for asking. Aye hostpital. Full remove. In around 6 weeks. I see from this site I'm not alone. Comes as a shock when first told. I first had pain in my testicle doc sent me for ultrasound were they found kidney growth by chance. That was a bolt out of the blue... Coming to terms with it. Slowly. 

I had a radical nefrectomy 5 years ago then 2.5 years ago they found Mets in my right lung which resulted in an upper right lobotomy giving me the best chance but it wasn't to be... 2 further tumors presented in the cavity and I started on tivo, I have been symptom free for almost 2 years but have now been told it's no longer effective. I started on cabometyx on Monday so hoping it buys me some time with my family - they have now said I have up to 1 year. It's hard to take as I feel and look fine.

Very best of luck with your treatment.