Clear Cell Carsinoma

Hi ,

I'm sorry to hear about your husband but welcome to the community.  Obviously I don't know your husbands situation and I am not medically trained.  What I do know is that kidney cancer is generally slow growing so it is possible that the cancer had spread to his spine already.  You might want to ask the consultant how long he thought the cancer had been there and how long it had been in his spine.  If it has been exacerbated by the delay then obviously you have the right to take the matter further although it obviously not change you r situation but might improve it for others.

It is good news that they got more of the tumour out of his spine than they expected, I hope that he continues to improve.

Having his kidney out is major surgery but is also fairly routine for the surgeons (as much as any major surgery is).  Have they said if they are looking at removing all the kidney and if so how?  You can get lots of tips on how to cope  with it better from this forum.  If you let us know what he is having then the information can be more specific.  The one bit of advice I would give is to ask for laxatives as soon as possible after the operation.  The anaesthetic makes most people constipated and they usually won't let you go home until you have moved your bowels although a couple of people said that their hospital was satisfied with them passing wind.  After kidney surgery you are better off not having to strain as it puts pressure on the surgery site.

You might also want to ask your consultant about any other treatments to address the tumour in the spine.  Renal Clear Cell responds to biological therapies and there are immunotherapy treatments available as well.  Unfortunately neither of them are curative at this time but I have been on my first treatment for six years and I know others who have been on it for longer.  As these are fairly new treatments it is unclear how long they can be effective for but they do seem to have some longevity.

It is scary and I would be amazed if you weren't but there are still many options available to your husband, iy becomes easier the firmer the plans are.

Please let us know how you get on.

Wishing you all the best,

Gragon x

Hi Lynda1, my husband is now stage 4 renal clear cell carcinoma. Our diagnosis was 5 years ago and he had his left kidney out a couple of weeks after his diagnosis. At that time he was doagnosed as stage 3 but sadly progressed to stage 4 around a year later.  My husband had only 1 symptom in the months prior to his diagnosis but the consultant reckoned his cancer was around 5 years old at time of diagnosis.  He recovered amazingly well from the kidney op and needed no further treatment for around 2 years until his metastasis needed controlling so initially he had radiotherapy and then was ok for another year before we then started on biological and immunotherapy treatments. We’re now a year in to treatment which is not expected to be curative. We’ve had a rocky path through treatment but my husband also has a serious heart condition so it’s been tricky managing the various treatments and side effects...however he now seems to have settled down much more and the treatment for his cancer is doing it’s job in that it’s keeping all his metastasis stable and not growing which was the aim of the treatment. 

I agree it’s incredibly scary but in time it will become easier to live with. My tip is maintain your sense of humour as that will get you through so much! Get as much help and support as you can from family and friends too even if it’s just to have a moan or chat. You have to remember you’re important too and there’ll be times you feel completely lost as a person so it’s important to try and maintain your sense of self too! 

good luck with everything and don’t give up hope, this community is great too, we’re all here to help. You can message me direct if you ever feel the need xx