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Kidney cancer

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

Radical nephrectomy and cancer aggressive starting to spread in 6 weeks since operation

Hopeful2020
Posted by

Hello all,

my husband (51 years old) had left radical nephrectomy because of a huge tumor on it. While still in hospital recovering he complained of abdominal pain and distension and vomiting, and they did scan and operated again because of adhesions.  We couldn’t visit him because of the virus. while in hospital he complained of left arm weakness and shock like sensations and after scan found brian lesion. 
He finally came home 3 weeks later....

He has had one stereotactic radiotherapy treatment for the brain lesion over 2 weeks ago but his arm is not much better as far as strength. He is taking 500mg Kepra twice a day. 
they are weaning him off steroids which are at 3mg daily and will go down .50mg every 5 days. 


its been 6 weeks since he’s home but he is still very weak. He’s struggling with constipation which causes major discomfort and abdominal pain. He is also on steroids which make sleep very difficult for him not to mention his mood. 
this week the pain is again troubling him so he started codeine again. 

we had meeting with oncologist yesterday who gave us devastating news that on the 6 week post op scan they can see more spread and new sarcomatoid cancer cells near where the kidney was. It is an aggressive type. Staged at 4. 


immunotherapy has been offered but I’m so worried that he is weak and hardly sleeps plus constipation and pain issues...... with side effects mentioned from treatment..... how will he manage

latchbrook
Posted by

Hi and a very warm welcome to the online community

I'm sorry to read how much you and your husband have been through recently. It must be an incredibly hard time for you both, made worse with the restrictions in place during the coronavirus pandemic.

I'm afraid I don't have any experience with kidney cancer or it's treatment but I spotted that you'd posted this a couple of days ago. By replying to you it will 'bump' it back to the top of the page where it'll be more easily seen.

I'm also going to tag this group's Community Champion into my reply so that she sees this post and can help you further.

Sending a virtual (((hug)))

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

buttercup01
Posted by

Hello , sorry your post hasn't been answered earlier. I did a reply which has disappeared.

Codeine will cause constipation. Is there any other painkiller he can take?.Can he  take his steroids in the morning, to help with his sleep? 

Has he a cancer nurse specialist (CNS) you could talk to re these issues? If not, it may be worth posting the above in the  "ask a nurse" group..

I'm sorry I''ve posted more questions than I've answered. Not being a medic myself, I  can only really point you in the right direction.   

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Hopeful2020
Posted by

Thank you for your reply. 
he was sent home from hospital with tramadol, which had bad side effects and so they switched him to codeine.

he was doing ok on just paracetamol but then since last Friday this pain in his left side has really affected him badly and it was so bad he had to take codeine again. He usually is really good with tolerating pain and hardly ever takes pains meds. It seems to be getting progressively worse and we are waiting for oncologist to ring us tomorrow....

he takes the steroids after breakfast and also takes lanzoprazole before eating breakfast. He’s on Kepra 500mg twice a day as well, 
We do have a CNS and she’s been very helpful and encouraging.

Also he has not had any follow up with urology doctors after operations. I suppose they have passed him on to oncology..... 

buttercup01
Posted by

Yes, I would say the urologists have passed him to oncology, tho it would have been useful if they'd told you that !

That's good you have a supportive CNS. Makes all the difference. 

Good luck with phone call tomorrow. Do let us know how it goes. 

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

Hello

i had a radical nephrectomy also and within recovery they found brain metastasis. I’ve had radiotherapy but I too have left sided weakness and fatigue. The steroids can cause more harm but my radiotherapy/ oncologist consultant for my brain says it is unlikely that the symptoms will improve due to the location of the tumour and swelling. 
ive just had to get my GP to chase the urologist as they haven’t been in touch, as for all I know the cancer could have spread further in my lungs and other organs!!! As they have made no follow ups. 

I too am youngish 45 and just need to know what’s going on. 

buttercup01
Posted by

Hi ,

How,did the appt go on 2 June?

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
buttercup01
Posted by

Hi , I'm sorry to hear about the mets discovered recently n suspect you've now been passed to an oncologist n that's why  the urologist hasnt been in touch. Tho they could have told you that!!

I was fortunate with my brain met, as it was treatable by cyberknfe.. Is there really no treatment they can give you, eg 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

Not bad. Tumour and swelling as were. Said symptoms will not change, which is not great as I won’t be able to work as I am. I am pleased that the the tumour is behaving though. 

Hopeful2020
Posted by

I’m so sorry hear this. It’s one devastating blow after another.....

the neuro-oncologist was not greatly positive either.
After one session of radiotherapy 3 weeks ago his hair is now falling out. His skin got so dry and scaly and cracked in some places. I don’t know if there will be another brain scan to see if treatment was effective before next consultation also equally fearful to hear any more bad news....

oncologist wasn’t much helpful regarding current pain except to say it could possibly be from the “disease” 

GP checked him and said the adhesions post surgery are starting to press on intestines causing them to narrow and has given oxycodone slow release pain meds. And advised to keep  taking movicol.

hoping pain meds will allow him to get some relief and allow him to get some sleep - which since last 5 days have been sitting on the couch and dozing off. He hasn’t been able to lay down on the bed at all.....

Hopeful2020
Posted by

Oncologist only said pain was possibly from the “disease” meaning the fact that there’s already growth where the left kidney was and that there are abnormal cells. He suggested going to the Acute clinic at hospital to be checked out and possibly to be admitted for further investigation if they couldn’t find something in outpatient. Husband is petrified of going to hospital considering the traumatic experience of being there alone for 3 weeks with complications after complications......

buttercup01
Posted by

Hi , don't forget your employers are obliged under the Equalities Act  to make" reasonable adjustments", as cancer is covered by that act ( was the Disability Discrimination Act)  The helpline will have more info, on 0808 808 0000, 8am to 8pm.

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