Beginning an unknown journey, any advice appreciated

Hi Cathy

I read your post and didn't want to not reply.

I had a double mastectomy at different times and an incidental finding was found on my kidney and has and is being monitored since.

I can't tell you what to do but I know without my husbands support and daughters I would have struggled.Everyone handles things differently and I'm a believer its also good to talk.the phone line with mcmillan is a great chance for your voice to be heard when you are ready in a safe place and this forum is good to put everything down as well.hou will find what works for you.

All the best.

• Hi Cathy. Bad luck.. I so empathise. I have had my kidney, containing a large Grade 3 tumour, removed by laparascopic surgery 8 weeks ago. They also removed a small tumour from my bladder. I am recovering slowly and steadily and have been told I need no further treatment .. they will just monitor me every 6 months for the next 2 years. I understand your reluctance to worry your family with it at the moment... I like to get on with/deal with things on my own so I can understand. So maybe wait until you have firmer answers after your MRI (I had CT scans, not MRI) and presumably a biopsy ... but then I would most definitely tell them, whatever it turns out to be. It may be benign but you will still need treatment/monitoring.. or if not treatment/removal. It is amazing what they can do now and how effective treatments are. Do let us know and do ask me any questions as things move on. Very best of luck. Tilly

Well said tilly.

I'm new to the kidney forum myself so it helped me too.thank you.

Thanks for the really helpful reply. I told my daughter and son-in-law today which really helped take some weight off. I'm going to wait until I have a proper result and plan before telling my husband.

Hi, i get what your saying, i think my brain is wired differently as i only worry when i have to, i was told they found a 6.7cm lump on my left kidney and the dr just said they get it out and then told me to go home and have a beer, so i went home had a beer and done what most people say not to do and googled it, and from what i found out its one of the better cancers to get as most people have it out and thats it, some will have other treatments but the rate of success is very high, i told my mum and we would make jokes about it, shes recently recovered from breast cancer, my partner doesn't understand how we were so chilled about it and i told her that the drs havent given me anything to worry about so there was no point getting upset until theres a reason to, I was more nervous of the op as it was an unknown for me but even that wasnt bad, the only bad part for me was the shoulder pain caused by the gas they use in the op. We are all different in how we deal with things but having your husband know will take a bit of stress out of it as then you're not keeping a big secret from everyone, a bit of support does wonders.

Good luck going forward

So I know it’s been a long time, 22 months since finding out I had a tumour on my kidney but I thought it might be good to tell you how it’s been going. I had my right kidney removed in March 2025 as it was basically one big tumour. It was stage 3 in the end and I began immunotherapy in May for one year. That wasn’t too bad, I was tired and quite itchy, which hasn’t gone away. I’m having six monthly CT scans. Unfortunately, the one in June showed a small 5mm ghost node in my right lung. They said they would repeat the scan in August. They weren’t concerned if it didn’t grow as many people apparently have them and they don’t cause any problems. Unfortunately, the scan showed it had tripled in size so they did a PET scan in September and I was told to expect to have a biopsy and possibly radiotherapy. Then in September the PET scan said there was nothing there and they would just repeat scans in three months. To tell you the truth I’m not happy. Firstly, I had stage 3 cancer in my kidney with lots of external links coming out (there was nothing definable kidney left just a mass of blood vessels leading across the right side of my body), secondly, my dad died of lung cancer, and lastly, I have no spleen which means I am immunocompromised. Am I worrying too much? I’ve requested a biopsy to be certain but they’re going to discuss it at an MDT meeting’and get back to me’. Thoughts?

Cathy_T said:

in September the PET scan said there was nothing there and they would just repeat scans in three months.

I can't see beyond this ^, and it seems an excellent (potential?) outcome and a good way forwards.  

I have learned over the 2 years since my own kidney removal that you have to chase things up and advocate for yourself and ask as many questions as you want.! In my case, while my other kidney is doing fine, it is now the bladder cancer that has worsened and in spite of BCG treatment the tumours keep returning as still aggressive and grade 3. I have refused bladder removal.. at 75 and with abdominal scarring and soreness and lipodema I cannot face another major abdominal op. At a consultation last week I was informed they left 4 cm of my diseased ureter behind by mistake 2 years ago. It has shown up on recent scans to look into abdominal pain. I had to really push for investigations into that pain. So now I have an MRI and PET scan soon to try and see if this bit of ureter has active cancer in it! So..yes, I think we have to follow our gut and ask for what we want..it can be done without rudeness or aggression. I am just honest about my fears and throw myself on their mercy, but stay firm and insistent. It seems to be taken well and prove effective. Stay strong.  Good luck.

I too believe in advocating for myself.Talking when anxiety raises its ugly head, Keeping anxiety in a box as much as possible....whilst grabbing what you love in good moments.

Wishing everyone well on their journey.Regards to all