Stage 1, I think, What comes next?

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Hi Community.

Male, 39, hardly any alcohol intake for the last 13 years. Non-smoker, Mostly in good health and fitness. Desk job with kids to keep me active. 6.5cm partially exophytic tumour.

I am at a loss right now. Life has really thrown some curve balls my way recently, but my whole life is turning upside down (Divorce in progress) and now they have found a 6.5cm tumour on my right kidney. 

I went in for other related issues in the renal/reproductive areas and they included the kidneys on my ultrasound. Immediately went for a CT with contrast to give the doctors more detail to work with.

I had a consultation with a surgeon yesterday. He has not seen my CT scans yet. But based on the write up description, a partial exophytic mass, he things full nephrectomy is the likely way to go. The first doc I spoke to said it was growing out of my kidney. I dont really know much more than that right now. Other than the first doctor saying it had not spread to blood vessels, surrounding organs, lymph nodes etc. Which I am hoping stays true until surgery.

I have obvious worries. Like if they do end up offering me the choice of partial nephrectomy, what are the extra risks? I understand that the surgery itself carries more risk to do a partial. I would also make an educated guess that even if they got all of the tumour, the likelihood of recurrence in my body would be higher in the same kidney that already developed it. So would I be living with the increased risk of cancer coming back if I had a partial, even if it was done perfectly? I have heard there are some other discomforts and post op complications from having a partial kidney left behind. But would appreciate any first hand accounts for or against full/partial if you are willing to share.

My concern over having a full would be the obvious lack of redundancy. Lack of redundancy at 60 and lack of redundancy at 39 just feel very different to me. 40+ years for something else to go wrong in my left kidney with no partial support in my right.

Other questions are new, after joining this forum. Just seeing some other things floating around like the Leibovich scoring system. When do they do that?

Once I go through the Op and they have the tumour out, they should test it to get confirmation on the cell type and other factors. Are there any results from this that would cause the post op treatment to change? Such as low risk cell types (Other than benign) that leave them unconcerned, or high risk cell types that leave them wanting to explore other targeted cancer treatments?

I guess I have many of the same worries that most people go through about living with 1 kidney and cancer spreading. I am normally quite solid with all of these types of things. very logical and pragmatic. But with the foundation of my life already being rocked, trying to do a midlife reset and start living my life for myself. This news has come along when I just don't have the same energy for research / problem solving / decision making. 

Am I being crazy for hoping they can do a partial? At 6.5cm, even if it is almost 90% exophytic, i just dont know if it is wise or not? I also get the feeling that the surgeon is erring on the side of caution. Which I get and appreciate. I just dont know how to temper his immediate and short term caution, with any medium to long term caution that I have. He cares about fixing me now primarily. I care about the now, but also about the best chance to live a really long and fulfilling life.

EDIT

A big thank you to everyone who has responded here and who posts in other threads. So I got to see a few images of my scans, and immediately I understood that a full Neph is the only comfortable option. So my surgery is booked for the 16th of May and I am now wishing it was tomorrow. I just want it over and done with.

I have been feeling a lot more aches/pains/discomfort in my kidney area since the diagnosis. Did anyone else find this? I dont know whether it is a placebo effect of knowing, or if my body was previously acclimatized to the pain as "normal" and now it knows not to ignore it so I am feeling things without a filter? Probably a bit of both, just more aware of anything going on there.

So I wait, trying to do normal things and keep exercising.

  • I have lived with one kidney for seven years and haven't had any problems. Yes it's a worry if I get any problems, but you only have one heart, one liver, and one brain, and a multitude of problems can arise with these organs.

    It doesn't matter where you go, there you are
  • *Looks  up "exophytic".*

    Too late for a nephrectomy for me, but from what I've read on here, a partial or full is determined on medical rationale.  You can start aiming for a partial but once they see what they are dealing with, it can become a full.  But you should definitely explore this further with your surgeon seeing as you are articulating it so clearly to us.   I've taken up a hour at a time of my oncologist's time to get the info I need to make a decision.  They love it - it makes their job interesting.  And they can see what's inside your head so they can help you more.  

    The threshold for a nephrectomy is 4cm btw. 

    You probably want to ask about adjuvant immunotherapy to stop the bu55er returning.  And CT scan frequency afterwards.  Although this could be urology or oncology that do this.

    Let us know how you get on.  We're always here to help.   

  • I understand that the surgery itself carries more risk to do a partial.

    I thought it was the other way round.  A full nephrectomy is open surgery therefore more impactful (higher risk?) and the recovery longer.  A partial is key hole so less risk to your body.  Unless you mean a partial neph. (I'm fed up of typing that Big Word again!) removes less kidney so increases the risk that some of the bu55er may remain?  Another Q for Mr/s Surgeon or consultant.   

  • Hi read your post and hope my experience can help 

    51 male pretty fit non smoker not much booze so similar to you .

    I know it's so stressful and worrying about your health and future just don't panic lots of help out there and plenty of time just keep strong.

    In early 2021 I was diagnosed with stage 1 kidney cancer a 8 cm advanced tumor in my right lung only solution was to fully remove it ,took a while to get over the initial panic and telling family and friends ( I was divorced at the time 3 young kids)

    Firstly work was geat fave me all the time I needed for appointments and working from home on bad days ( proposals engineer) with your age and fitness you will recover quickly I was only in hospital 2 nights and took about three weeks easy going to get back to working full time.

    You can live a normal healthy life on one kidney I didn't feel any difference ( need to go to the toilet a bit more often and get tipsy on a pint ) other than that it's fine.

    My kidney cancer did get worse progressed to stage 4 but it's rare most get the kidney removed and as it's contained in the kidney happy days .if not look I'm still here after 3 years.

    Hope it helps any questions let me know

    All the best Ryan 

  • The surgeon I am speaking to said that they do Keyhole for the actual surgery and then make a single incision in the lower abdomen to remove the Kidney itself. So for a Full Neph they can still do keyhole potentially. This guy seems to have been a big driver of the robotic keyhole surgery in the area, so might be more experienced or keen to use it in that way?

    As I understand it, when you remove a part of an organ like the kidney, the state you leave it in is tricky. Cutting into the organ and leaving it functioning well and able to heal well is a challenge. Whereas simply removing the whole organ is simpler and "tidier".

  • Thanks for this. I will certainly be taking up a lot of their time for this stuff... I will talk to them about immunotherapy and other follow on therapies, to fully understand what I might be in for.

  • Thank you for this R. Lung or Kidney? or had it spread from your kidney to your lower lung? Either way, stage 4 and that treatment must be really tough. I hope it is all cleared and stays clear for you. Thank you for sharing your experience.

    I am feeling like maybe taking the whole thing and being done with it is the right option. But I guess I will hear whether a partial is even a possibility tomorrow when the doc calls me. Might not even have the option.

  • Hi, I don't think you are really given a choice about partial or radical (complete) nephrostomy, it's based on medical factors. But don't worry, as others have already said, radical is still often done by keyhole and it is better, with recovery quicker. It's amazing how they do it - I have 4 small scars and the one bigger one where the kidney was removed. No difference in how I feel with 1 kidney - it's remarkable really! There are certain medications you should avoid with 1 kidney, such as ibuprofen. My tumour was about the same size as yours but the grade (how aggressive) and Leibovich score are the important things and they don't know these until they have examined the type of cells in the tumour once it's been removed. Mine turned out to be a grade 4 and Leibovich score of 6, which is intermediate/high chance of recurrence so I am now having Pembrolizumab, which is going ok - only had 2 of 9 treatments so far. Waiting to know all these things is sooo hard but my best advice is try and set the worry/fear/uncertainty aside - there are things you can't control but your mind is one thing you can - sometimes and with some effort! Just focus on other things that you have and carry on with your life - what will be will be and you just have to cross the bridges as you come to them. Good luck with everything and always come back here to share experiences and help process it all. 

  • Thank you.

    That helps me understand better what might come after. I can only hope that mine is not very high. But can only wait and see.

    How was yours found? Did you have symptoms or was it found by accident while looking for something else? I hope your therapy goes well and you have no long term side effects.

  • My surgery was keyhole and I was home the following evening

    It doesn't matter where you go, there you are