Chromophobe renal cell carcinoma spread to pelvic bone

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Im not new here & ive posted on a few different threads for advice but ive yet to find anyone in similar situation seem to be struggling a bit just lately,

In may 2023 I had my left kidney removed after a large tumor was found & i was told it had Chromophobe renal cell carcinoma, i was told i didnt need any other treatment like chemo or radiotherapy but was goung to have yearly scans,

in july 2025 a small nodule was found on my lower left lung & it was being monitored, skip to march 2026 & aftercwsking in the night in bad pain in groin & hip area scans revealed id fractured my pelvis & further tests shown it was metastatic renal cancer & it was also in my lung, so now classed as stage 4 treatable not curable,

4 weeks ago I underwent surgery at Birmingham royal orthopedic hospital to have the lower part of my ischium removed ( Hemipelvectomy, once ive recovered from the surgery enough ill have surgery to remove my lung nasty,

has anyone been through similar & what treatments/ operations did you have & how did you recover? Also has anyone been cured from it? I try not to read too much into it all or think too bad about things & i know some will say tgats a good thing but I font want to be nieve & think all is or will be ok, i have been told it will most likely return at some point be it 1, 2, 5 or even 10 years time & ive been told where surgery can be done to remove it it will be but there may be a point surgery is not an option & i will need chemo / radiotherapy or similar,

i just worry that not having that at the minute will allow things to spread more, maybe if id had chemo etc after having my kidney removed i wouldnt be in this situation now, can anyone offer advice or if you've been through similar that would be a great help, thankyou.

Kindwishes2all 5 days ago

I’m sorry to hear what you’re going through. I had my left kidney removed 4 months ago due to a large mass, 11cm. Following the op it was diagnosed as chromophobe renal cell carcinoma. Like you I was told i don’t need further treatment and will have a follow up scan in 6 months. I pray they are right that I don’t need any preventative treatment.

I hope you recover well from surgery and don’t have any more problems.

shellyBon 5 days ago in reply to Kindwishes2all

Hi im sorry your going through similar to me & I hope my post hasn't made you worry about yourself going forward, my mass was 14cm & was hard to believe at first as id only started with symptoms 2 months before which was pain in my side & blood in urine initially treated for kidney infections but as it didnt get any better I ended up goung A&E for urgent ct scan & was thinking kidney stone, mine was on the upper pole of my kidney, i was told it had grown iver a good few years & was less likely to spread which im sure for many it is but not so much in my case & im hoping that now ive had my pelvic surgery & once uve had my lung nasty removed ( luckily only 9mm) on last scan though that was 3 month ago now so possibly grown a mm or 2 but hopefully thats it for many years( like to think for good) but they say the longer it is before recurrence the better chances you have so I have my fingers crossed, I just feel strange thinking about it all, I feel I should be worried / scared about it all but im sort of not, not sure if ive just not accepted it all, people i know who I explain to about it i tell them but feels like its not about me, im currently still on crutches, my surgery was 4 wks sho today & no way can I do without them as still in alot of pain, ive had to buy a second hand mobility scooter so I can take my 5 year old to school as my husband works, Iwe also have 4 other children who are older at 13,15,18 & 19 so they help out alot but feel awful im putting them & my husband through all the stress & worry,

I hope your recovery is going well, my kidney op was much easier than my recent surgery, just take your time & let your body heal aswell as your mind & just listen to your body x

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Chromophobe renal cell carcinoma spread to pelvic bone