r/kidneycancer

Thank you ! All of the comments, support, advice, and prayers have been invaluable. I am going to the hospital and it should be 12:30 surgery start time. I feel confident and positive that this too, shall pass. Down to one hour at a time. Lol. Take care everyone.

And I find it really hard to comment on or give others hope, like “Who am I to comment”. I was diagnosed with kidney cancer on January 3, 2024, had the left kidney removed and 25% of the right. I’ve been on keytruda and lenvima for 30 months with all clear scans since.

Other than the usual side effects, I’ve tolerated the treatment (keytruda & lenvima) and all my CT and MRI scans have been negative. But some days, hell, most days, I just can’t escape from the reality that I have cancer. It’s omnipresent and it jades all my thinking.

I just get tired of the cycle, you know? Waiting for the other shoe to drop, for the doomsday clock to start winding, etc. And I know none of that is healthy or productive, but I can’t seem to help it. I guess people who aren’t going through it or something similar can’t really understand how tiring it can be mentally to never get a break from a diagnosis or prognosis. Or the feelings of guilt when others have it much worse than I do. Or the wondering if treatments ever have a stopping point…

Was told that I had a cyst on my kidney. Bosniak grade 4. They didn’t tell me the size.
This was from an old scan that got missed. So arranging a new scan asap.
Could this have got bigger or spread in a year from when it was first documented but nobody thought to tell me??
And with a grade 4 is it likely the kidney is coming out??

Thanks

Please read till the end.

My posts may be familiar for some of you as I’ve posted frequently over the past month about my husband’s journey. I’ll try to make this as brief as possible.

Discovery.

A little over a month ago my husband went into the emergency room for another issue. Doctors gave him a CT scan with contrast and discovered a solid kidney mass. He was referred to a urologist who told him that there’s a very high possibility that he had kidney cancer- we were devastated! He had an MRI with contrast and was scheduled for surgery. Surgeon thought that he was a good candidate for a partial nephrectomy but informed us that he might have to remove the entire thing if the mass was near an artery.

Surgery.

Surgery went smoothly and the mass was removed and sent to pathology for further examination. My husband spent one day and change in the hospital before he was discharged. Gas was pumped into his abdomen during the surgery and that caused discomfort after surgery. He is currently on day 3 post surgery and recovering well.

Pathology report.

The moment we heard the news of a possible cancer diagnosis we were devastated. I’ve spent many hours in the early days just worrying, crying and feeling overall defeated. Masses that are above 4 cm have a 70-85 percent chance of being cancerous. Doctors were treating it like a diagnosis before even removing the mass so we were prepared for anything.

Education on kidney cancer helped to alleviate fear, stress and worry since I was reassured constantly by you lovely folks on Reddit that shared your stories with me on what to expect after surgery.

Today July 3rd- 3 days after surgery we got my husbands pathologist report back.

Negative for cancer 😳

Most people that have masses this size often end up being diagnosed with kidney cancer. I’ve read so many stories of people being diagnosed with cancer with kidney masses and never any of masses being benign (this size)

We were very shocked with the results. In my mind and heart (although this is excellent news) I do feel as if my husband had cancer because of the way it was treated and the worry and stress that we’ve endured this past month. The point of this post ? Kidney masses are treated like cancer until a pathologists final report comes back and proves otherwise. We have beat the statistical odds but can definitely relate to each and every person on here that’s had to deal with this.

Hi. I’m currently living a nightmare. Last year (Feb 2025) I had an ultrasound of my liver because I was diagnosed with fatty liver, and they incidentally found a mass in my right kidney. At that time I had a CT scan, and it was a Bosniak 2F cyst measuring 4.9 cm. They told me to just monitor it every 6 months.

My doctor didn’t want to give me the referral for the new CT scan because Im young (in his words) but I insisted. After one year, my new CT scan (May 2026) is now showing a Bosniak 4 cyst (5.6 cm) with a 1.1 cm nodule. Then he finally referred me to a urologist.

My urologist sent me for an abdominal MRI. The MRI didn’t catch the nodule and classified it as Bosniak 3. He suggested doing a radical nephrectomy. Thank God I looked for a different urologist — an oncologic urologist in a bigger city — and he offered to do a partial nephrectomy instead. For now I don’t have symptoms. Urologist says I will be okay, but I’m still very scared.

Has anyone in this group had a cystic renal mass? What was your outcome?

Thank you so much for reading.

It was an incident.

About 3 month ago, I finished one big DIY project (replacd a 800 sqft second floor carpet with hardwood flooring), then I started feeling a little bit abdomen discomfort when strain during urination and bowel movement, nothing else, probably a 1.5/10 pain level only when straining. I thought it was musucle related since I lifted a lot of heavy stuff. Then I went to see a general surgery doctor, she suggested me to do a CT scan with contrast, thank god, I did it. This is how the renal mass was found.......I was shocked......Been terrifying for 2 weeks now......And after seeing 2 doctors, they both suggestted me to have a surgery which is to partially remove my kindney meaning only the tumor since it is not too big.

So now the only thing I can do is keep praying for myself and try my best not to be scared......Hope Everything goes well, I will keep updating....

It's been just over two months since my stowaway was discovered , incidentally . I'm 54 newly dx diabetic with years of fighting off insulin resistance with diet from PCOS when my pcp did routine labs, discovering my liver enzymes were elevated, so she wanted to take a " peak" at my liver and we found a2.9 cm Clingon attached to my R kidney, they also discovered my main bile duct was unusually dilated , at the same to add more anxiety to the salad bowl of crummy news. My PCP ordered an MRCP mri which did not visualize the mass well so my first appt to the Urologist was a moot point as he was unable to visualize my tumor very well. He sent me back home ( 2 hrs away) to have more testing and in the meantime I had a trip to the local ED due to blood in my urine.. they did a CT and the urologist was happy with the results , called me in to inform me the tumor may be small but it's abutting the renal artery , rein veins and Ureter. This makes me a " complex" case, normally I wouldn't be biopsied but since I'm being referred to a tertiary center, a biopsy is needed the verdict ...ccRCC. Im in New England,so I've been referred to Dana Farber in Boston. It's 4 hours 1 way from my home.
I can't even get in to see the Surgeon until 8/11 so who knows when surgery will be.
I feel like I've been dealing with this forever , I just want my PN if it's even feasible by the time they see me.
While we were in the " ruling out " stage I had all this support and love sent my way, it's been 2 weeks since we found out the biopsy results and I have been ghosted by all of that support I thought I had.
I have been on an emotional roller coaster for days. I'm trying to stay positive but some days it's extremely hard.
Thank you for allowing me this space to vent .
I wish everyone well ❤️

Hey all it’s been a minute since I posted on here. But I figured I would give an update. Originally diagnosed with stage 2b grade 2 clear cell renal carcinoma. 10.5cm tumor. Radical robotic nephrectomy Feb 2024, Vanderbilt, recovered excellently. Have had scans every 5-6 month since, all clear except last March an intermediate lesion was found in my remaining kidney. 34 years old currently.

This led to a scan abl it a week ago that basically listed a 1.4 cm tumor looks to be RCC on my right kidney. No other sign of Mets. I have had genetic testing and came back negative. GFR and creatinine have been fine and stable, with my GFR last time checked was 96.

Met with my doctor and he said we could watch and wait, see a tumor board, or do a biopsy and cryoablate at the same time. Im choosing biopsy/ablate. Hopefully after this hump I’m back on the road to clear scans. There’s still a chance this isn’t cancer but I’m assuming it is.

Would love to hear from others who have had similar experiences!

My dad (M54), has been battling RCC for the past 1.5 years. It's been exactly 1 year since we first discovered lung mets, which were so tiny at the time. Since then he has rapidly progressed on 4 different lines of treatment, to the point where now he has good sized lesions across his hilar lymph node, pelvic lymph nodes, liver, abdominal mesentery and so on.

I see so much about new developments in oncology medicine which used to once make me feel so hopeful, but now makes me feel resentful people say cancer treatment has pivoted in recent times yet nothing has worked for my dad so far.

I am truly happy other people have benefitted so greatly from recent developments and new medicines. Yet I know how selfish it may sound but I really feel resentful nothing has helped my dad yet.

Don't know if anyone else can relate but I needed to vent out my frustration.

Hello, like many of you I (28M) never thought I’d type this. Yesterday I was in a motorcycle crash/hit and run that I stood up from an walked away. It’s a miracle I’m alive.

During my CT scan they found something and the doctor told me. It’s a 29mm so 2.9cm cystic/solid lesion on my lower pole of the right kidney. No hydronephrosis, free air, free fluid, and no lymphadenopathy is seen.

That was yesterday at midnight, I’m waiting for the urologist to call me. I’m scared. Terrified. But reading you all saying yours was caught early gives me hope.

I’m going to be asking for more help from family and friends. But to you all. I don’t know what to make of my report so far. A weird blessing in disguise from the motorcycle?

I think the waiting is what hurts the most.

It’s 1:47 am July, 1 2026.

Today is my husbsnd’s partial nephrectomy !! Please keep us in your prayers. Last week I was nervous about this process but now that we’re finally here I can say that I feel a lot more positive and hopeful.

I’m so thankful to this group of wonderful people. I’ve learned so much about kidney cancer through this group- you guys are great ❤️ and so supportive! I now feel obligated to make posts on my husband’s journey (lol) for people who are new to this.

Edit - surgery was successful. Began at 8 and ended at 10:30 ish. I met with the surgeon and he said that he did great. They were able to preserve the kidney and he did not need a drain. He’s in PACU now trying to wake up. I’m beyond relieved ♥️ thank you for all the thoughts and prayers.

Hey guys,

Wanted to update anyone who was interested and also give a positive outcome so far to those who are looking for some encouragement for the future.

Had my partial nephrectomy on June 25th and everything turned out great. Surgery was about 2 hours and the doc told me this should be curative pending pathology which I will know in July. I kept 95% of my kidney and estimated blood loss 10-50 ml. This tumor was barely hanging on. I have a picture and it looks like an inflated tick!

Not gonna lie, the few days following were ROUGH. I could barely get up from the bed, it just hurt too much. I have two incisions and alot of bruising on my hip. Most of the pain came from the hip and I was told that was due to the wedge they put me on during surgery. I stayed at the hospital for two days, felt nauseous and barely ate. The pain meds I was given in the hospital didn’t quite cover the 5 hour spread so I was also given morphine. I’d try to sit upright and could barely breathe because again, it hurt too much. No drain with my incision but I did have a foley and holy shit, did that suck when it was pulled! People talk about gas pain and yes, I felt that too in my shoulder and shoulder blade but it wasn’t the worst and it’s gone now.

I’m home now and things are better. The pain is covered by Tylenol and I’m up and walking, showering, even did a little laundry today. I’m a side sleeper so sleeping on my back sucks but I deal. Now I can just sit at home for the next two weeks and play Diablo! Hoping I can go back to work after.

Hang in there guys! I know my situation could have been much worse and there are still some unknowns but keep up the fight! Hope this is a light for those needing to hear something good.

So, just met with anesthesia and surgery is July 16th. They told me that the entire procedure (how long the surgeon booked the operating room) is 8 1/2 hours. Is this normal? Its supposed to be a partial nephrectomy but I also have GIST (rare stomach tumor) that will be operated on later. Just curious.

Hi everyone,

I have a follow-up appointment with my doctor to discuss my biopsy results and creating a treatment plan. I have Stage 1, Low-Grade Papillary RCC, 5.3 cm tumor. It is likely I will be put on active surveillance.

I'm very fortunate that this was caught early, even though my already poorly functioning kidneys from PKD pose a bigger threat. Still, I am almost thinking it's no big deal.

I've been trying to just understand, *comprehend* that I have cancer. I mean, I say it to myself: "I have cancer. *Cancer*. It's like me looking at a mixed up Rubik's cube before I even try to solve it.

Anyone else feel this way? Thank you in advance for all your insights.

Hi, in October 2024 I was diagnosed, then December 2024 I had my right kidney removed and half the left one along with my gallbladder, that didn’t stop it, it’s in a few places now but the pain from the ribs is the worst, they have given me some palliative radiotherapy for that, and the side effects from the drugs are really taking it out of me, but, they have slowed the blood supply down and I’m hoping I’m going to smash the 12 months I was given!

Happy to talk it if anyone is nervous, I thought I would be a mess but it’s had the opposite effect, getting everything organised and planned, almost calm about it, most of the time, I still have moments when anger hits me but trying to enjoy while I can

I finally met with the oncologist today for my stage three grade 2 RCC. I’m 4 weeks post op. Since I have Rheumatoid Arthritis already we decided it best to not do Keytruda and just monitor with scans. My scans will be every 4 months for now, then move to every 6 months and then at some point yearly for 5 years. I’m happy to have a plan as the waiting was really taking a toll on me and feel like we made the best decision for now.

My surgeon saw me as well today and he is a very well known surgeon at MSK and also teaches and said I was already discussed at a conference for having such a small tumor (1.7 cm). He said the students and follows all said they would have waited and watched and then he told them my pathology and they were all shocked. He said he’s glad I removed it. That little tumor really packed the punch!