r/kidneycancer

So I posted a couple weeks ago and had a Radical Nephrectomy on my right side August 7th after ~9.8 cm mass found on right kidney from what I thought was kidney stone.

Pathology report came back:

Clear Cell Renal Carcinoma and is Unifocal pT3a and “predominantly Grade 2”

Lymph nodes not involved

Extends into renal sinus
Extends into pelvicalyceal system

Sarcomatoid or rhabdoid features not identified

All margins negative for invasive carcinoma

I will meet with Oncologist soon and my Urologist advised that given my age I should consider Immunotherapy.

For additional context:

- got discharged after 12 hours because my situation improved.

- no blood visible with a naked eye in urine, but sample showed small traces of it

-before consulting with radiologist the ER thought it could probably be a ruptured cyst; radiologist ruled it out.

- no metastasis

My husband was diagnosed last year around August with kidney cancer. The following month he had a nephrectomy and was diagnosed with RCC stage 3, grade 3. We then decided to seek a second opinion at MD. Anderson for future treatments. They recommended immunotherapy(keytruda). My husband decided to do it because it was something his 2 oncologists recommended due to the aggressiveness of the cancer. Now, seeing my husband continue to develop tumors and more growth despite being on immunotherapy has me thinking. He is already on his 3rd line of treatment within a period of 9 months. Could it be that it was the immunotherapy that caused him to develop more tumors and more cancer growth? He was fine the first 3 months of not having any immunotherapy after his surgery then he decided to do keytruda and out of nowhere he had developed a tumor in the psoas muscle and also lung nodules. He is now stage 4. Just last week he started Cabo and Nivo. I have seen him deteriorate lately, his thyroid is fried, and he also has adrenal insufficiency. He regrets doing Keytruda then Ipi and Nivo. Maybe we should have waited before starting immunotherapy. I am just so disappointed and saddened in everything. In life, in everything :(

Bonjour,

Je suis nouvelle sur le forum et je viens dessus pour savoir si certaines personnes vivent la même chose ou l'on déjà vécu et pour avoir leur retour et essayer d'avoir un peu d'apaisement.

Il m'a été découvert il y a 2 ans un kyste bosniak 2f qui lors de mon dernier scanner il y a 2 semaines est passé en 3.

Il est dit sur le compte rendu qu'il fait 46 sur 36 ( a pris 1 cm en 2 ans),il y a cloisons épaisses,prise de contraste et une pseudo image végétante.

J'ai vu un urologue hier qui m'a dit que l'opération était la solution.

Il m'a parlé d'une néphrectomie totale mais j'ai préféré qu'il me fasse une lettre pour voir un autre urologue sur un plus grand hôpital où ils ont un robot qui peut faire que ce soit plus une partielle.

Il est situé au pôle moyen et pousse en extérieur (je ne me souviens plus du terme exact).

Il m'a dit ok et m'a prescrit pour une IRM et scanner thoracique pour plus de précisions pour l'autre urologue.

Est ce que un de vous a déjà subit une néphrectomie partielle ou totale et comment cela s'est il passé car cela m'angoisse énormément même si je sais que j'ai pas le choix que d'y passer.

Cette attente et examens a venir sont stressants.

Je suis de nature très angoissée en ce qui concerne le médical.

Désolé pour le message long et merci pour vos retours.

Belle journée à tous.

48M and went to doctor for suspected kidney stone in right kidney - by the time I made it to the CT scan, the pain subsided and scan showed the stone was out of my kidney and in my bladder, but found a 4 cm mass on the lower pole of my left kidney.

Went to urologist #1 next day and he ordered a CT with contrast which also showed the 4 cm mass and suspect for RCC. Talked about option of doing a biopsy but was led to believe by urologist #1 that they are a waste of time and he believes that it is 85% cancerous. Also asked him if I was a candidate of a partial nephrectomy which he said that he felt partials are too dangerous. Set up surgery date for 2nd week of August for radical nephrectomy.

Made a few phone calls and found out that the network urologist #1 is in does not have the capability to perform the biopsy, so that made me question a few things. Also found out that urologist #1 does not perform partial nephrectomy's at all and does all of his surgeries manually as his hospital does not have robotic capabilities.

Prior to the surgery date, I went an hour out of town to a cancer center with a urologic oncologist. Immediately found out that the 85% number I was given was inaccurate, and that it was closer to 70% of suspected RCC tumors are cancerous - 30% are not. This doctor ordered a MRI and drew blood for DNA germline testing (results pending). This doctor also said that I am absolutely a candidate for a partial nephrectomy as I am T1b and the mass is located in the lower pole of the kidney so it should be easily accessible and not interfere with other components. This doctor also put in an order for a biopsy simply because he doesn't operate on patients unless he knows it is cancerous. If it turns out to be benign, he suggests that we move into a surveillance care plan and forego surgery. Out of caution, cancelled the first surgery date.

Did the MRI and confirmed that the mass is indeed 4 cm and in the lower pole. There is a small area at the top of it that doesn't have a "defined" line as seen on the CT scan, and was assured that during surgery, he'll have the ability to go in with an ultrasound and see exactly where the top of the mass is at and will make his cuts as necessary.

I have since booked a tentative surgery date of the first week of September for a robotic partial nephrectomy with urologist #2, with understanding that if he doesn't feel confident in locating the top edge of the mass, it will turn into a full nephrectomy. I feel a little more confident in the second doctor as he has actual cancer training and appears to want to understand the tumor more prior to just cutting out the entire kidney.

Oh, also did a renal function test and found out that the kidney with the suspected RCC tumor in it was doing 60% of the work while the other kidney was carrying 40% of the load. Kinda makes me ponder even more at the situation that we nearly removed the kidney that puts out more fluid just to find out that the tumor in it is possibly benign...

Anyone else get two pretty different opinions when seeking a second opinion??

Hi - I’m new to this and like many am completely terrified as I’ve found out in the last couple of weeks that I have an 11 cm tumour on my right kidney and a thrombus going into the vein up almost to my heart. First consultant appointment last Thursday was so negative and scary but they said they still had to hear from the regional MDT the following day. That brought more hopeful news that the specialist thoracic consultant at a Manchester hospital can operate. I’m waiting on an appointment and I hope that he can be more positive and hopefully a bit reassuring as I’m in bits. Only turned 60 in March and was asymptomatic so this is such a shock. I’d love to hear some success stories - and I wish everyone in this club that no one wishes to join heartfelt warmest wishes on their journeys.

My son was born this past January. We found out in February that my husband has cancer. He had surgery to remove the kidney and is currently undergoing treatment. While I was pregnant, we both knew we wanted 2 children. Since his diagnosis, we have been less certain about having another one.

I am so positive he is gonna live a long life. I’m worried I’m in denial about it. I just have this feeling that he is gonna make it. He is more concerned about it. The numbers aren’t exactly in his favor; I think it’s something like 50% don’t live past 5 years from their diagnosis. He is also concerned about his age. Has anyone been in a similar situation? Or wwyd in this situation?

Edit: I just want to thank everybody for their input. I think I know the best choice; I just needed to hear it from someone else. I'm reposting this in the kidney cancer group just to hear their perspective.

Last July 2 I had a right kidney radical nephrectomy with Fox Chase Cancer Center surgeons . I am 63 year of female . Was otherwise in good health took only vitamins .

My pathology wasn’t great . My tumor involved the renal sinus had 5% necrosis and was pretty aggressive looking . But no lymph node or other Mets . I was graded T3A for tumor and grade 3 for cancer .

I just finished a year of immunotherapy with Keytruda . I had all the side effects including the thyroid but I generally kept on with life . I just had a cat scan where a 12mm or 1.5 centimeter mass identified to be kidney cancer on my left kidney now . I guess the good part is unlike my previous tumor this one is on the outside wall of the kidney not in the center . I did genetic testing months ago and I don’t have genetic predisposition for kidney cancer .

I meet with my surgeon this Thursday and my kidney function of the left kidney is really really good it’s filtering well and my creatinine are all in the normal range .

I think my only two options here are removing the small tumor and a margin via surgery while also trying to minimally impact my remaining kidney , or cryoablation using cold or heat to destroy the tumor . Fox Chase is known for doing partial nephrectomy on difficult cases so I know I’m in good hands . Just wondering if anyone has had this happen ?

M Y brother had bilateral kidney cancer and his tumors were very small he’s doing well but honestly this is very scary . Please pray for me. Thank you

EDIT: Got a second opinion today. Surgeon reviewed my CT and MRI with me and said that a radical nephrectomy was not necessary. Although the tumor is close to the collecting ducts, he’s confident that he can get the tumor out with clear margins and still have it be a partial nephrectomy. But that if once he’s in surgery he determines that a radical is necessary then he would do that. He’s having me go in for a biopsy next week and I am scheduled for surgery on Sept 30th. Yesterday, I met with the initial surgeon that told me there was no way of saving the kidney and he didn’t even go over the MRI images with me. Then he told me he doesn’t even do partial since they don’t have the necessary equipment at the facility. WHUT? So take my whole kidney because it’s necessary or just because you don’t have the ability/capability to do a partial?

I’m going with the surgeon that can do both, hoping he can do a partial instead of a radical but it was a relief to have the option. He took the time to explain everything in details, explained all the imaging and is taking the time to biopsy it.

That other surgeon was immediately burning the house down to kill the spider.

Get a second opinion. Thank you for the advice here.

——

Had a CT to check on a hernia and they saw a tumor in my kidney.

Abdomen CT 3 weeks ago: New abnormal enhancement of the medullary space of the right kidney, 2.2 cm. This is consistent with renal neoplasm.

They scheduled me for a robotic radical nephrectomy later this month.

MRI result from this week: 2.6 x 2.4 x 2.4 cm heterogeneously enhancing solid mass in the lower pole right kidney involving the cortex and medullary space, suspicious for renal cell carcinoma. No evidence of renal vein involvement. No evidence of metastatic disease in the abdomen.

CT of chest from this week: No concerning nodules. Small calcified granuloma in the medial basilar segment of the right lower lobe. No evidence of metastatic disease to the chest.

I’m wondering is a radical nephrectomy still the best option. Those of you who have had a similar experience, what am I looking at here long term? I have an appt with my doctor on Monday and just want to make sure I’m asking the right questions. Any advice would be appreciated.

Husband diagnosed w Stage 4 kidney cancer in May. Nine inch tumor extending from his left kidney. He is on 14 mg lenvema daily and Keytruda every 45 days. Doc said they cant operate because the tumor is so intwinwed in his lower intestines so they are trying to stop and shrink the tumor. Luckily the tumor is not attached to any other organs yet and is not in his lymph nodes. He is also taking 2ml Ivermectine daily. I am considering getting the RSO syringes but am afraid it might mess up the other treatments. But I feel like at this point, what have we got to loose? He's 6ft and already down to 123 lbs.....Has anyone else with kidney cancer had luck w the RSO syringes?

My cystic mass was found back in April of this year. CT report:

- Approximate 2.6cm transverse by 2cm CC by 2.1cm AP enhancing soft tissue mass with eccentric central cystic component (approximately 2cm transverse by 1.5 cm AP by 2.1 cm CC) seen in the lateral aspect of the right middle pole kidney, suspicious for cystic renal neoplasm (Bosniak 4: percent malignant 80%)

So I had my surgery Aug 13. Doc says it went beautifully and he feels he got the whole thing, expects that I am now cancer free. 🙂

The abdominal and incision pain hasn’t been too bad. I guess it’s about what I expected. However, word of warning in case someone else experiences this. The gas they used to inflate my abdomen traveled up to my lungs and irritated them. It was horrible painful and super scary because we didn’t know what was happening. Apparently it is called pleural irritation and can be a side effect of robotic PN. The pain was sharp and so intense! It went from my diaphragm up to my neck, all in my right side, which was my surgery side. Luckily, my IV hadn’t been taken out yet, so my nurse quickly gave me some dilaudid when she saw how much pain I was in. Even still, it took a while for it to calm down. I don’t share this to scare anyone, but for the knowledge of what it is. If I had realized what it was, I wouldn’t have been quite so sacred. I thought my lung had collapsed or something horrible.

They did stat chest xray, ekg and cbc. Doc quickly determined what it was and assured me that all was fine. My lab work was even better than the day before and my chest xray was excellent.

I only stayed one night in the hospital. They kept me until 4 pm the next day because of my episode of pain. I’ve been fine since I returning home. I slept well and showered this morning. Walking a little and sitting in our recliner. Eating and drinking well. I expect it will get better each day. Thanks to this group for all the support, especially @ok-star1807 and @quickray2 who let me know that I needed a urologist rather than a nephrologist. My primary care had referred me to the wrong type of doctor and I would have waited weeks more if it wasn’t for this group. Wishing everyone the best!

Hii, so I am a medical student. And I am conducting a research on Renal Cell Carcinoma. I was really wishing if anyone can share their medical reports, ofcourse with name and patient id hidden, I just need your serum Creatining and RFTs majorly.

I am doing a drug repurposing study and I would I really love if you can help me it.

Additionaly, any cancer will work fine, as long as you can share with me your results of 2 years back and that of right now.

This research, I assure you, is not for my own good, but you and as a member of this community.

Greetings-
I had a radical nephrectomy about 6 months ago (stage 1 Chromophobe). I’ve been feeling pretty well since my surgery. I’m still a little fatigued and labs a few months ago showed my eGFR at 45. Today I was hiking uphill and I got pretty dizzy. I had to stop several times. My hands were also really puffy and swollen. I felt hydrated and had water with me.
I will mention this at my next follow up but just wondering if anyone has had similar issues.

My dad started Keytruda as adjuvant in april. Ct scan was clean. Now it’s august and the new CT scan shows micronodules on lungs. Doctor says “possible pseudo-progression”, but also “suspicious in context”. How many of you had this pseudo progression?

I had a partial nephrectomy on August 3 for a 2.6 cm Bosniak IV cystic kidney mass. I also have stage 4 CKD from a genetic kidney disorder with multiple “simple benign cysts” on both kidneys, so preserving as much kidney function as possible was especially important. GFR before surgery was 24 and 12 days later it is back to 22 (but dipped to 18 when I went to the ER.)

The surgery itself went as planned, but my immediate recovery was much rougher than I expected. Within the first couple of days I developed a significant fever and chills and ended up back in the ER. My doctors repeatedly described what happened as a surprisingly strong inflammatory response to surgery.

I had quite a bit of testing because they understandably wanted to rule out infection and other postoperative complications. I had blood cultures, imaging, and additional testing. My blood cultures ultimately showed no growth. There was some concern about shallow breathing and mucus retention after anesthesia and possible postoperative lung changes, and I was treated with IV antibiotics followed by oral antibiotics as a precaution. I also received a few heparin injections in the hospital, and a subsequent VQ scan did not show evidence of a pulmonary embolism.

My labs also took a hit after surgery, including anemia and worsening kidney function, although some of those numbers have subsequently been moving in a better direction. I have been extremely fatigued. Even something like taking a shower can wipe me out. My incisions themselves seem to be healing normally.

I am still waiting for the final pathology, which is obviously adding another layer of anxiety.

What I am most curious about is the fever. Has anyone else had a significant fever or very strong inflammatory response in the days immediately following a partial nephrectomy without ultimately having an infection? If so, did your doctors have an explanation for why your inflammatory response was so strong?

I know everyone’s situation is different and I am following my own doctors’ recommendations. I am mainly interested in hearing other people’s experiences because this part of recovery caught me completely by surprise.

Without telling you the whole long story.....
I've been waiting since April to meet my surgeon, I met him Tuesday, finally, and we are a go for a partial nephrectomy in a month.
what I'm leery about is 3 spots found on my chest CT during staging, they are small but one particular spot is labeled "suspicious" due to location and it's the biggest spot of the 3. It's only 5 mm, so am I being hyper sensitive in worrying a bit? I'm a worrier anyway, but I don't believe in coincidence, and a lot of stories lately have been popping in my feed of people who were told they were only needing surgery to having the cancer some back only months to a few years later. I don't mean just kidney cancer, I mean cancer in general.
Anyway, thanks for the support and listening to a worry wort.

Original backstory here.

My wife's path report hit MyChart today, PT1A - Grade 2. Pretty much the second best result we could have hoped for (benign obviously being the best). The actual tumor size turned out slightly smaller than imaging which was a nice surprise. Negative margins, no sarcomatoid/rhabdo fatures, no necrosis, no invasion whatsoever. To say we're relieved would be the understatement of the century. Her follow up isn't until the 27th, but I imagine the plan going forward will be regular scans for the next few years and not much else.

I'd like to give a huge shoutout to the staff at NYU Langone. When they originally said she most likely could do this all outpatient, I was skeptical. They said if she wasn't feeling well or requested to, they would absolutely admit her overnight. Turns out she didn't need it. They really have got this shit down to a science. Her procedure was at 7:30am and she was home in her bed by 5:30pm (that includes sitting in rush hour Manhattan traffic on a Friday lol).

The whole process from check in to surgery to recovery was incredibly efficient and flawless. My wife also has had many bad reactions to anesthesia, so going in that was one of her top concerns. We met with the anesthesiologist beforehand and she was sharp as a tack. Sure enough, afterwards there was zero nausea or any bad reactions. She even gave us a list of meds she used so in the future if my wife ever needed to be put under for anything, they could repeat her cocktail and most likely avoid any complications.

Recovery has been uneventful. She tires easily (expected) and has mild to moderate pain that's pretty well controlled by meds. Her appetite is really good and she's improving daily!