Metastatic kidney cancer

Hi Cath and welcome to the community.  I would not take the prognosis to heart as at best it is a guess by the oncologist and plenty of people here outlive their "sell by" date.

It would be helpful if you could give a few more details such as the type of kidney cancer your partner has.  I have renal clear cell (RCC) and am now six years on from being told it had metastasised.  RCC is the most common type of kidney cancer and has had the most research done on treatments so as well as immunotherapy there are also targeted biological therapies such as the one I am on.  This means that if one treatment stops being effective another can be tried.  Most of these treatments have been established in the past few years so they are not fully included in the statistics yet.  If you could give the name of the treatment then anyone on this treatment will be able to advise you regarding the side effects and how best to deal with these.  You will find that fellow patients know more about this side of things than the oncologist.

If you let people know what type of kidney cancer it is then other members will be able to add their experience of that particular type.  If you were able to put this in your profile as well it would avoid being asked this question again and again.  If you click on your username at the top right of the page it will give you a short list including profile.  If you click on that you will see another button called "edit profile".  Clicking on this will let you edit your details.  You can go back and alter or update this as often as you like.

Wishing you both all the best,

Gragon xx

Cath, when reading this I couldn’t believe it, it’s a carbon copy of what we are going through at this very moment. Hubby Paul 53 years, we have two kids 18 and 22. In November we were told Paul’s kidney cancer had spread and was metastatic throughout his lymphatic system including spleen, abdomen and lung. He had to choose his treatment either targeted therapy or immunotherapy. We chose immunotherapy and he has had 2 cycles of Nivolumbab/ipiimumab infusion. He feels very fatigued at the moment and cannot get on with his building work and is worried he has chosen the wrong treatment. Can I ask what treatment your partner is on? I certainly know what you are feeling right now, it’s like a living hell, we have no idea what’s ahead of us, what life expectancy might be, in fact oncology told us very little it was our Macmillan nurse that spelled it out to us as non curative cancer. I have just read Gragon post below and it’s filled me with such hope, the thought of the possibility of years instead of months is just the boost we need. Please let me know what treatment plans your oncologist suggested. Best wishes to you all. - Debbie

Gragon, I cannot emphasis the impact of reading your comments above. Unfortunately our oncology team has given very little information about life expectancy. I have just read out your post to Paul, the part about you being 6 years into your treatment, this has given us quite a joyous moment, the thought of him living a few years longer is incredible. Thank you for your post above, we have chosen immunotherapy but we were offered the targeted therapy as a choice as well. That was a very low point for us, having to choose which treatment when we have no medical experience at all. Thank you for giving us some hope. - Debbie

Hi Gragon

Thank you for your reply and encouraging words, and glad to hear 6 years on you're still fighting.

Mark's,cancer is Papillary kidney cancer and he is about to start is 2nd round of Tivozanib tomorrow.

I am still finding my way around this site but I will follow your instructions to add to my profile.

Thankyou again and all the best for the New year.

Cath x

Hi Debbie 

Lovely to hear from you and like you say it seems like you are experiencing the exact same as me and Mark. 

And like you we've not had much information from the oncologist, he seems quite reluctant to answer any questions, either because he doesn't have the answers or doesn't know them, we did ask him the life expectancy and he did answer that which we are struggling with that answer. 

Mark will be starting his 2nd round of treatment of Tivozanib tablet tomorrow and fingers crossed doesn't appear to have had any side effects from the 1st round.  I think he's struggling more mentally, some days are better than others. He's still got his great sense of humour and still continues to make me laugh.

It's our Son that concerns us a lot, we've told him what Mark has got but we can't bring ourselves to tell him the life expantancy, we can't give him the pain we are feeling.

What have you told your sons? 

Wishing you and Paul all the best for the New year and hope to hear from you again.

Cath x

My mom was diagnosed with stage iv kidney cancer in 2013. We were told that she had 6 months to a year to live. She lived 8 years. I feel compelled to tell families this because it is unbelievable how wrong her prognosis was. If she can live 8 years, your husband may very well live 10,15 or 20 years or maybe even be cured. Don’t give up.

Hi, thankyou for taking the time to reply to my message and giving us hope. Glad to hear your mum proved them wrong x

Hi there

i thought I will drop you a line to give you some more positives to hold on to.

My husband was diagnosed with stage 4 kidney cancer in February 2019. At the time he was fit and healthy 46 year old man. After a small accident at work he had an X-ray on his arm, then sent for MRI and we were told that he has cancer in his arm. Week later after more tests we were told that it is kidney cancer that spread to his arm and lungs.

We were in complete shock, , our kids were 2 &7 then so still so little.... 

In the following 2 months he’d lost 3 stones and was very poorly and sick when he was going to go hospital to have surgery on his arm in May....

his arm was fixed ( he has metal bone now) and he’s started his treatment with Cabozantinibib. 

two years later - he put on all his weight back , he’s been stable for the last 15 months and a few weeks ago they’ve decided to remove the primary tumour ( nephrectomy). He’s recovered well from the op and he will soon have the next set of scans and a treatment plan to go forward.

I know how hard it is to accept the news but once the treatment plan is in place it is much easier. 

I wish you both a lot of strength and I hope the Covid crisis won’t affect/ delay any treatment for your husband.

best

I had my right cancerous kidney removed in Aug 2017 and was given the all clear until June 2019 when I got told the devastating news that metastatic cancer cells were detected in the “illium crest” area on the left side of my pelvis. I was then told I had an estimated outlook of around 4 years and was put on Pazopanib. This past Thursday at my post scan consultation with my Oncologist I raised this time span once again with him. He told me the 4 years mentioned was based on an average history of past case studies of patients in similar circumstances. During our conversation he told me he has patients that are still going strong after 10 years which was quite reassuring. Apart from the side effects of Pazopanib especially lower abdominal pain and discomfort I’m doing well with no further spread of cancer.

Thank you for sharing your situation on the forum. Having such young children must be an extra strain/worry but glad to hear he got over his nephrectomy so well. Fingers crossed his next scan will be positive results. - Debbie