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.

Starlady 1 month ago in reply to 39yrs 6.5cm

Hi, thank you, I hope so too! I had no symptoms. I had had an infection that was giving me stomach pains, had a course of antibiotics that resolved it and my very thorough GP had recommended I have an ultrasound to check my gall bladder. The appointment for that came about 6 weeks after and I said to her 'I suppose there's no point me going for that scan now we know what the problem was' and she said - 'just go along anyway'. So at the appointment they told me my GP would want to talk to me as they had seen a gallstone. When I went for that appointment, she told me they had found something else - a 5-6cm mass on my right kidney. So it was a massive shock, hard to take in. But I am lucky I guess, as it could have carried on growing for years with no symptoms apparent and proliferating in other places. Many people have a similar experience - I think about half of kidney tumours are found when looking for something else. Makes you think there should be some kind of screening....

Janey36 1 month ago

Hi 39 yrs,

I’m 8 weeks post op, had radical nephrectomy via robot assisted keyhole so had 4 small incisions and the larger one. Was home after 2 nights. First week is the worst but was sensible took it steady on recovery and found it better than I expected. Fatigue is a bit of an issue but rest when you need it. Immunotherapy starts next week and hoping to go back to work, again sensibly which is hard when self employed. Still avoiding lifting or full on stretching or anything too strenuous. I know I’ve been prodded and poked around the incision areas but it’s more of a tightish healing feeling than painful.

Cant answer anything about partial as was never an option for me with the location of the tumor

Once it’s out you’ll get histology back on what it was. This will guide whats next.

It is a total smack in the face when no symptoms of anything of this magnitude and then it all happens. Mine was incidental find and felt generally well, I’m 48 btw.

I totally get the worry about only having 1 kidney, luckily for me I’m very matter of a fact and try (easier said than done when waiting for scans and results) not to worry about what can’t change but focus on what can change. Once I know what’s what and worst case I can deal with it. We only have 1 of other organs, having a 2nd is a bonus card. This will change certain hobbies i did that have a high risk of injury but hoping all will generally be ok.

Ask questions to those in the know and this site has been very helpful too.

Are you waiting for a surgery date now or an appointment when scan result is back?

EJ7861 26 days ago in reply to Janey36

Hi. I have a pre op date of the 8th May. I haven’t been given a date for the op yet but it will be a partial nephrectomy as my tumour is quite small. It will be done robotically laparoscopically. I am terrified of the op and have read what others have said with interest. My tumour was found incidentally.I had a CT colonoscopy and then was sent for a CT with dye and a bone scan. I have a much smaller mass on the other kidney a small nodule on my lung and bone foci. They are not interested in these although the surgeon has asked haematology to look at the bone foci. It has been an extremely worrying time waiting for results and then the results of the MDT. We were also cancelled in clinic and saw a urologist privately. I wish you all well with your treatment journeys. I will post when I can

Kismet 26 days ago

Hi! First thing to note is that anything consuming your kidney, malignant or not, can't really stay there-especially at that size. When mine was just over twice that size, it had built it's own blood vessels through my kidney and I was urinating blood (gross hematuria(sp?)). Everyone is different, but you get the gist.

As you have read, lots of folks (like me) have one kidney, and generally speaking I have no symptoms and a huge scar I can tell sea-stories with. There are just a few things that can cause kidney issues (certain OTC meds), so they recommend staying off them with one kidney, but that is a risk thing, not debilitation.

You might look at your situation in the perspective of, "That's why you have two of them".

pat :-)

Kismet 26 days ago in reply to EJ7861

EJ7861

Don't be worried! Look at how fortunate you are with modern medicine. Robotically means virtually no scar, and it's a partial! Yay!

It wasn't that long ago that all Nephrology had was leeches, chanting, and of course never leave out Phrenology...

pat :-)

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