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Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Struggling with options.

Ollie22
Posted by

I found the surgeon extremely helpful, if you haven’t been given a Macmillan nurse you should get one after seeing the surgeon, I never spoke to anyone about what I was going through as I didn’t know what to say, I had a radical open nephrectomy, stay positive and keep plugging on, good luck  

Stuff you cancer, you are not going to beat me !!
buttercup01
Posted by

Nooo, don't bury your head in the sand 

It'll b much better once you have a treatment plan.

Glad your mum's going with you tomorrow. Always good to have someone in your corner x

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
PurpleK
Posted by

Hi, back from seeing the surgeon. He was lovely and put my worries at ease. 

Because the tumour is in the centre he said that partial would be difficult but he's going to have a go using robotic, guided with ultrasound but he said its possible he'll have to resort to a full removal which I've agreed too. They are currently having the ultrasound equipment installed so once that's done I'll have my op! Phew 

buttercup01
Posted by

Hi I had a large tumour ( about 10cm) removed by open surgery 14.5 years ago. The surgeon did it via my abdomen, not the bac.We agreed I won't ever b wearing a bikini -too fat anyhow.

Good with  with it done robotically. At least u know it can b done manually if not.

Sue

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

Hi

I'm so pleased that your decision has been respected. I can only say that I wouldn't worry if you end up with a full rather than partial. Surgery is surgery - it will take as long as it takes to recover regardless. Your kidneys would still have to recover full function - and one can do that alone if it needs to. I was full and it's been totally fine since.

Lots of luck to you in the next few weeks.

Jo
x
buttercup01
Posted by

Hear, hear

Sue

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Imac64
Posted by

Hi PK

I am currently faced with the same three options and confused as to what to do and i guess that's natural.I haven't felt as yet that i am being pushed to much down one route but the inter team meeting of hospital experts did recommend cryotherapy as the way to go,based on my tumor size (14mm) and in light of possible compromise of immune system after major surgery ( ie Robotic assisted PN ).

Part of me felt that the choice they made was because of COVID19 and the outcome if I were to get it,not that that would be definitive and i did ask that question and was told ultimately I could choose,without prejudice to have either treatment. 

I sympathize with your predicament and hope you have had in the period since your message had a satisfactory outcome.I am still at this time none the wiser after reading some online material suggesting higher recurral rates with cryo but then buoyed by some reports that the act of cryo ablation may trigger a more positive immune response for any recurring cancer they may occur elswhere.

regards 

Ian

Imac64
Imac64
Posted by

Hi 

Being that I have a small tumor in my right kidney and facing similar options and having similar fears,I am curious as to what option you chose in the end.?

regards

Ian

Imac64
PurpleK
Posted by

Hi I had a robotic partial nephrectomy back in February. Recovery wise it has been plain sailing really.. odd bit of pain now and again but nothing major. I don't regret my decision to go with the operation as I felt it was the best option for me. 

Good luck 

KLM000
Posted by

I had a full nephrectomyin feb. I was recovering well, consultant said they got everything and I was really positive. Do not dismiss anything that makes you feel like something isn’t right. I suddenly started being clumsy and dizzy. I was diagnosed with inoperable brain tumour - kidney metastasis it had spread???? In April. Now since Jan, cancer and coming to terms that I’ll never see my children grow up. 

Imac64
Posted by

Thank you for sharing your thoughts my friend.

I am sad to hear that your cancer has spread and to think of how you must be feeling.I always wanted children but it never seemed to happen for me.

When I hear of such things happening to people with kids,well I can't imagine how that must feel and my heart goes out to you all.

Sadly I know so many young people with cancer now,when I say younger I mean in there in their 40-50's,some of those with children and you just don't know what to say.

The thing is we always say to live for every day,every ounce of time, especially  with and around our families,these things are precious and no  more so than for you.

Make as many memories as you can for them now and Live Strong...

IMT

Ian

Imac64
buttercup01
Posted by

Hi , when they say inoperable brain tumour, can they not use cyber or gammaknife? This will depend where it of course. Or what about immunotherapy?

I had cyberknife in 2013. recently had gammaknife, followed by immunotherapy.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
KLM000
Posted by

Hi. Had gammaknife, but the tumour/swelling doesn’t appear to be subsiding. Keep trying to cut down on the steroids but struggling with that too. It’s in my midbrain/pons so affects feeling in hands, feet, face, eyesight and mobility. I just feel like why me. I’m 45. Feel like my life has been stolen from me. 

buttercup01
Posted by

Have they not suggested immunotheraphy as a follow up?

I know is doing OK with it. I

can well understand your feeling your life's been stolen from you n you only 45. Don't know,what to say.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Imac64
Posted by

Was your surgery in scotland or elsewhere in the Uk and who was your surgen.?

Imac64