r/kidneycancer

41 year old female, 8 days post op from a radical nephrectomy. It was clear cell carcinoma, 7CM and no chance of saving the kidney.

My eGFR number was 71.9 two days after surgery and as of yesterday (bloodwork done by family doctor) it’s 57.9. My creatine has also risen from 1.01 to 1.21

My doctor didn’t seem too fazed but I’m freaking out and wondering if it’s normal for kidney function to drop. I mean, I’m sure it is while the one kidney takes over but I’m so worried about losing the last kidney :(

Thanks to all of you for being here and thanks to those who make this such a gentle and kind place. This is my first post here but you have all been with me during my hospital stay, surgery etc. I am leaving the hospital today after a partial nephrectomy and honestly, my anxiety has been very manageable I think because this community told me what to expect.

Just thanks for now. This is a special place.

I came on here because I wanted to get to know more people that are in a similar situation as Iam I have renal cell carcinoma clear cell type WHO/ISUP grade 2 it was 2.5 CM I had a partial nephrectomy on march 20 2025 I thought I was good that it was gone but no I went recently to the ER due to pain in my left side (cancer is on my right kidney) and I had a CT scan which shows kidney stones in my left kidney now now as of today I had a chest CT scan to see if my cancer has spread to my chest it has not but it is enlarging in size and its not only the part of the kidney I previously got surgery on now its not in one part of my kidney but 2 somehow the dr who did my surgery before “missed” the other more bigger cancer on my kidney that my new dr sees on scans from the past so now next week I have to get surgery again another partial nephrectomy they wanna do their best to preserve my kidney function iam 37 years old they say im to young to do radiation due to the long term effects I just hope this will be the last time im trying to be positive but its hard ty for reading is there anyone else going thru something similar? How do u cope?

Of course I'll talk with my doctor about it, but it JUST hit and I'd like to learn as much as I can before I meet with the doc.

I had a Partial Nephrectomy on May 9. Tumor was 5.5cm x 5 x 3.5. Patho result as follows:

A: Kidney, left, partial nephrectomy, left renal mass --- or 37:

RENAL CELL CARCINOMA, CLEAR CELL TYPE, WHO/ISUP GRADE 3. (SEE COMMENT AND CAP PROTOCOL)

Parenchymal resection margin, free of tumor.

 

B: Perinephric fat, left perinephric fat -- or 37:

Fibroadipose tissue, no tumor present.

Immunohistochemical stains show that neoplastic cells are immunoreactive for CD10, CAIX, Vimentin and immunonegative for CK7, Cathepsin K. BAP1 shows retained expression in tumor cells. These results support the above diagnosis.

TUMOR

Tumor Focality: Unifocal

Tumor Site: Upper pole

Tumor Size: Greatest Dimension (Centimeters): 5.4 cm

Additional Dimension (Centimeters): 5.3 cm

Additional Dimension (Centimeters): 3.5 cm

Histologic Type: Clear cell renal cell carcinoma

Histologic Grade (WHO / ISUP): G3, nucleoli conspicuous at 100x magnification

Tumor Extent: Limited to kidney

Histologic Features: Sarcomatoid or rhabdoid features not identified

Tumor Necrosis: Not identified

Lymphatic and / or Small Vessel Vascular Invasion (excluding renal vein and its segmental branches and inferior vena cava): Not identified

MARGINS

Margin Status: All margins negative for invasive carcinoma

REGIONAL LYMPH NODES

Regional Lymph Node Status: Not applicable (no regional lymph nodes submitted or found)

pTNM CLASSIFICATION (AJCC 8th Edition)

Reporting of pT, pN, and (when applicable) pM categories is based on information available to the pathologist at the time the report is issued. As per the AJCC (Chapter 1, 8th Ed.) it is the managing physician's responsibility to establish the final pathologic stage based upon all pertinent information, including but potentially not limited to this pathology report.

pT Category: pT1b

pN Category: pN not assigned (no nodes submitted or found)

ADDITIONAL FINDINGS

Additional Findings in Kidney: Interstitial chronic inflammation

Gross Description

View trends

A:

Kidney, left, partial nephrectomy, left renal mass --- or 37: A partial nephrectomy specimen (7.5 x 6.3 x 5.5 cm) with attached perinephric adipose tissue (9.8 x 6.3 x 2.7 cm). The specimen is oriented by the surgeon and there is a portion of renal sinus at the resection margin.

 

There is a 5.4 x 5.3 x 3.5 cm red–orange soft well-circumscribed tumor present. The tumor shows areas of hemorrhage. The tumor abuts the renal sinus and is 0.2 cm from the resection margin. The tumor does not grossly invade into the perinephric adipose tissue.

 

The remaining kidney parenchyma is unremarkable.

 

INK CODE:

Blue–resection margin

Orange–renal sinus

SECTION CODE:
A1–A3, tumor with entire renal sinus interface and closest parenchymal margin

A4–A7, tumor with perinephric fat

A8, nonneoplastic kidney

BM

B:

Perinephric fat, left perinephric fat -- or 37: Consists of multiple pieces of yellow adipose tissue (7.0 x 7.0 x 2.0 cm). The specimen is serially sectioned and no lymph nodes are grossly identified. Representative sections in cassettes B1–B3.

ML

This message is about my mother, who was diagnosed with kidney cancer six years ago and underwent surgery to remove her kidney and spleen. Since the operation (from day one, in other words), she has had stomach pain when she gets up, when she walks, when she coughs, and when she strains to have a bowel movement... The doctors say it’s adhesions.

Twice a year, she has a TEP scan; they don’t detect anything, and she has been considered in complete remission for the past three years.

And we are very happy about that.

However, she is still in pain, and sometimes it’s severe. She has gas, trouble going to the bathroom, and pain. The doctors say it’s due to adhesions (pain and constipation); she often sees the doctor, who prescribes medication to help her go to the bathroom, but it doesn’t make any difference.

Today, the doctor examined her and her stomach is tender. She suggested that my mother get a pelvic CT scan, but since they can’t see anything on the PET scan, I doubt they’ll see anything on the CT scan...

So my question is: What should I do? Is this normal? Do you have any tips for relieving the pain?

And best of luck to those who are still battling this disease

I'm through staging. And while I wish I knew more, my career team is prepared to move forward with treatment on Thursday.

What I know is that I have stage IV cancer that has spread into nearby lymph nodes and one lymph node near my trachea. All other areas show clear. There wasn't enough viable material (most was necrotic) from the lymph node biopsy to sub-type, but Hopkins believes it is clear cell and they stated it does not present with sarcomatoid features...which is something we were initially told it did.

I am slated for dual-immunotherapy treatments once every three weeks for four cycles with Opdivo and Yervoy (Nivo-Ipi?). Then scans again. Then once every 28 days with just Opdivo.

At this point, they are going to leave my kidney in place, but have 'warned' me that they will potentially come back at some point to remove it. When...they don't know.

They told me to be prepared for AT LEAST a year of treatments...more probably two.

So, off on this journey I go. Hoping for a positive outcome. They said cured isn't a word I can expect to hear...but killed what you had and we don't see any new stuff sure sounds good right about now!

Hi there,

My father in law was just diagnosed with kidney cancer that has spread to his lymphatic system and to his lungs. The doctor told him that they don’t think they will be able to get it all. It was found incidentally during a CT. He has no symptoms what so ever.

What does this mean for him? How long can
He expect to live. The doctors didn’t provide any information regarding that. He starts immunotherapy soon and is 55 yo and relatively healthy.

We are all very scared as from what the doctor said, it sounds like a death sentence. Can anyone share any experiences with anything similar? Thanks so much in advance.

Hi can anyone tell if they were poorly before treatment started. My mum has been diagnosed with possibly metastatic kidney cancer that has spread to her lungs. We are just waiting on the lung biopsy to confirm this. If confirmed it’s kidney cancer in the Lung she will be starting immunotherapy and targeted therapy. My concern is she’s feeling quite poorly and is struggling to eat and sleep. Will this all improve after treatment starts. I feel really helpless and I feel like she’s just fading in front of me. Any positive outcomes will be greatly appreciated.

Newly diagnosed. The urologist found a contained papillary tumor in my left kidney. After CT without and with contrast and a uteroscopy with biopsy they determined that it was a low-grade carcinoma from the biopsy with high grade cells in the urine. Everybody's talking about taking the kidney. No one is talking about chemo. I see the kidney/urinary cancer specialist at MD Anderson tomorrow. He is going to take the samples from the original exploratory and send them past another pathologist to make sure. If I do lose one kidney what should I expect, specifically with recovery time? How long before I can lift things (I am getting ready to move). I am 68 years old and not in great shape.

PS I'm scared as hell, mad at God, and completely paralyzed into watching TV, eating and sleeping, and playing with the cat.

Partial nephrectomy for 4cm ccRCC in 2024, good kidney function and no other known issues. I swear I have to pee more often than other adults and about 25% more frequently than before surgery. Anybody else?

I've been scheduled for a radical nephrectomy of my right kidney after a CT scan showed a 3.9 cm mass on my right kidney.The Urologist said the mass is too centrally located for a partial nephrectomy or ablation. I had been hoping to preserve my kidney. However after doing some research, I'm now really worried about the possibility of the mass is a renal medullary carcinoma. I'm 38 years old and have the sickle cell trait, so this has me really worried since the average survival rate is around 2 yrs for RMC. I currently have no symptoms and no evidence the tumor has spread.

34 M
Hello, I had a Radical Nephrectomy in 2017, I would like to know if anyone has tried scuba diving after a Radical Nephrectomy and how was the experience and what are things I should be careful about?
Thank You Very Much

60 yr old male— I just had a partial nephroctomy due to a Bosniak 3 cyst on Wednesday. Major pain subsided after 1 day but with lingering soreness. (Thank God for Toradol)
I looked in my chart and the pathology results are in for the specimen they removed.

Papillary Renal Cell Carcinoma
pT1b (5.9 cm)
Grade 3
Negative margins
No vascular invasion
Localized disease

Freaking out a little and it will be 10 days before meeting with my surgeon again , do I just came here for support and insight and what to expect next. Thank you so much for this community on Reddit. It’s already been so helpful!

Hi everyone,

I am a 21-year-old student from Morocco, and I wanted to share my story because my case seems to be very rare, and I am hoping to connect with people who may have experienced something similar.

A few months ago, I noticed a growing lump on my scalp/head. Over time, I started developing headaches and fever symptoms. Brain MRI and CT scan showed a large destructive lesion in the skull (around 5 cm) with bone involvement and thrombosis of the superior sagittal sinus.

In March 2026, I underwent surgery at the Military Hospital in Rabat. The surgeons achieved a complete resection of the tumor and affected bone. Post-operative MRI and PET scan were reassuring and showed no visible residual disease or metastases elsewhere in the body.

However, pathology and immunohistochemistry suggested that the tumor may represent a metastatic clear cell renal carcinoma / MiT family (TFE3-related) tumor. The confusing part is that repeated imaging of my kidneys (ultrasound, CT, MRI, PET scan) has not shown any visible kidney mass.

My immunohistochemistry showed positivity for markers such as PAX8 and CD10, which supported renal origin, but because of my age and the unusual presentation, my doctors are also considering rare alternative diagnoses such as clear cell adnexal tumors/hydradenocarcinoma.

I have now started adjuvant radiotherapy to the surgical bed (30 sessions), and my oncologists are planning advanced molecular/genetic testing (NGS) to better characterize the tumor.

My case has been described as “orphan/rare,” and my doctors are discussing it with international renal cancer specialists but they stoill do not responding to them .

So, having my surgery mapping scan at the end of May. Last mri in January the tumor was "1.5 x 1.0 cm solid mass lateral midpole left kidney with postcontrast enhancement. This does enhance following IV contrast infusion. On the prior CT scan, Hounsfield units of 78, up from 28." So, looking at this I can say that it looks like cancer. It is probably stage 1 rcc.

I keep telling everyone that I caught it early, its no big deal. Cut it out and ill be fine. Up to this point in trying to help my family and friends feel better, I feel like Ive convinced myself that it really isnt cancer. As I get closer to surgery, my subconscious is pushing me to face reality that I do have cancer.

Has anyone lived with the denial to finally have it hit them when they are at the point of taking action?

Wife has had ZERO success on all the heavy hitters....She is only 38....Now her lungs are absolutely flooded with mets and she started with ccrcc stage 4 grade 4 with an 11.2cm tumor on kidney and only 7 tiny mets in lungs.....Within 6 weeks of starting ipi nivo she had tons of progression and a 5.2cm tumor grow into her chest wall in just that 6 weeks and then 6 weeks later on cabo 40mg nivo ahe has innumerable mets in both lungs and another 4.2cm growth on the other lung.....She has had zero growth in her main tumor but absolutely zero shrinkage anywhere else.....We are at a loss and she ia currently in hospital....she does have vhl mutation but she is already anemic with a hemoglobin below 8 along with very low protein and fluid in her lung and abdomen....we are being seen at Duke....Because this has been so abnormally aggressive I asked for a biopsy on her lungs to make sure something else is not going on

I know Belzutifan with possibly Lenva could be an option if insurance approves but was wondering if anyone has any input with a similar terrible path to start with this massive of progression and if so did anything eventually work.....Starting to wonder if immunotherapy caused hyper progression or if she has something on top of the ccrcc....Any input as always is so much appreciated

Creatinine level was 1.32, and it was 1.16, 3months back.
Is it normal?, still need to visit a nephrologist. Urologist said to wait and watch

56M

Nov 23 - 5.2cm mass left kidney
Feb 24 - radical nephrectomy, left kidney & 6 lymph nodes
Mar 24 - grade 4 ccrcc, microscopic cancer cells in 2/6 nodes
Apr 24 - commenced Pembro
Jun 24 - Pembro not working, return & spread & no longer curable
Jul 24 - Tivozanib- not as effective as hoped, so in
Sep 24 - Lenvatinib & Everolimus began
Dec 24 - scan results = shrinkage then 18 months stable
Apr 26 - progression & spread to liver, spine x2, lungs, psoas muscle
May 26 - started Cabozantinib

51 yo female

Just some questions really -

Has anyone had similar where immuno didn’t work for you? What were your next steps?

Those on Cabo, what side effects did you get & how soon did they show up?

Any positive stories at this stage?

Thank you!

My mom recently was told she has a tumor on her lower kidney that is thought to be cancerous. The good news is they caught it very small and it’s a good location for removal. I believe the dimensions are 1cm x 1.9cm. She is most likely going to get it removed without needing to get her whole kidney removed. This tumor was discovered by accident in a ct scan because my mom has been having pain slightly to the left of her mid/upper spine as well as pain that radiates from her back to under her ribs. The thing is the pain she is experiencing is on the left side but her tumor is on her right kidney. She has had other tests done. Her pancreas, other kidney, bladder, lungs, surrounding organs, etc look good. Her lymph nodes in the surrounding areas of her kidneys look good and her blood results are good too. Her urine has also been normal. She does have gallstones but they also aren’t on the same side as where her back pain is. She is worried of possibly having another tumor in her spine or something and she also recently had a routine mammogram and is concerned about the results for that even though she isn’t showing signs of breast cancer. The doctor is thinking maybe the back pain is a herniated disc or she is dealing with some sort of muscle or nerve pain. My mom also has osteoporosis so it could be that too. She is going to get an mri to check out her back. I’ve read that sometimes cancerous kidney tumors can metastasis to other areas including the spine? I don’t know. It’s been a scary process with all this scanziety! I’m optimistic about her kidney tumor removal, just worried about these other tests now. Thanks! Sending you all good vibes!