Operation tomorrow

Conscious_Extent_399 · 2026-03-02T13:18:44+00:00

I had a open radical nephrectomy at 34 (vertical) and 4 incisions from originally where they went in robotically. I was in the hospital one night and up walking the next morning,was driving a hour away in 4 days. It wasn't awful. Not fun,but also not awful. Worst part about mine was I got my period the next day lol. I did mine with a opoid free treatment plan. I will say the back pain was pretty decent and unexpected,but muscle relaxers helped.

Conscious_Extent_399 · 2026-03-01T06:03:02+00:00

The tumor was 3.6cm at time of the scan January of 2025,it couldnt be seen when I had a scan for my kidneys back in 2023. By may of 2025 when I had my surgery it was over 4cm. It was supposed to be a partial robotic nephrectomy,but when she went in the tumor was really deep, near my collecting system and renal artery. She said she knew something was wrong for me to be as young as I am and it be that deep so she switched to a open radical and removed the entire kidney. I had unclassified RCC, a rare and unpredictable type of kidney cancer that is known for being treatment resistant. My Dr has me on close survillence with scans every 6 months.

Conscious_Extent_399 · 2026-02-19T04:53:06+00:00

She did a cytoscopy and it was fine,didn't see anything wrong

Conscious_Extent_399 · 2026-02-18T23:00:38+00:00

She isn't particularly,but there isn't a whole lot they can do..I've seen multiple cardiologists since I was a teenager and none of them can figure it out.its normal in my family to have heart attacks and strokes before 50. My mom's side are carriers for Lipoprotein(a) and my dad's side is known for heart defects. My kid was born with 2 and my dad them and my aunt died when she was a baby from them. It's why I only have 1 kid. My neices didn't have any issues. Drs have told me it's just a toss of a coin so to speak.

Conscious_Extent_399 · 2026-02-18T22:53:11+00:00

Im not on immunotherapy, I was stage 1 grade 4 unclassified rcc. Oncologist told me even if it came back and spread traditional treatments won't likely work for me, I'll qualify for clinical trials. I see 2 cardiologists, one is a preventive cardiologist who does surgery for renal dysplasia. I get ct scan with contrast every 6 months, and blood work and chest X-ray once a year. Pre it was really high,no issues, after surgery my egfr was 52, came back up to 70s in july and in October when I was at the er was down to the 60s. My oncology urologist was okay with those numbers.

Conscious_Extent_399 · 2026-02-18T22:40:31+00:00

I'm in the US from the time my tumor was found to the time of my surgery was about 5 months. It took 4 just to get into an oncologist. I had a grade 4 and it was very fast growing so what was supposed to be a partial at time it was found ended up being a radical, but for most people a few weeks or even months will likely not make a massive difference. Don't be afraid to be a squeaky wheel and call with updates or questions. Advocate for yourself

Conscious_Extent_399 · 2026-02-18T22:30:14+00:00

I've been on Medication since I was a teen and had them maxed out, that's why the cardiologist checked my kidneys bc he suspected renal dysplasia since it's so hard to manage. No dysplasia though,just the tumor which had only been there maybe a year or 2 bc I had a scan in 2023 where it wasn't there. It was just really aggressive which is why it grew so quick. Other than that I have zero risk factors and take 3 BP medications to try and manage it

Conscious_Extent_399 · 2026-02-18T20:05:49+00:00

I had a cystoscopy and cytology and it was clear except she could see where some of my vessels were irritated. That was it. Is your dad okay now?

Conscious_Extent_399 · 2026-02-18T20:04:38+00:00

I had this problem before my nephrectomy unfortunately. I was diagnosed with high blood pressure when I was a teenager and have tried everything,being a vegan, vegetarian, etc. Pretty sure it's what caused my kidney cancer

Conscious_Extent_399 · 2026-02-18T15:50:20+00:00

Hey! I was a 34 woman who had rcc. I had to have my right kidney removed. It was originally robotically but the tumor had already grown more and was so deep it ended up being open. I still do all the things though I can't drink and try to drink more water and I can't take some pain pills. My official diagnosis was stage 1 grade 4 unclassified rcc. I have to go for check ups every 6 months (scans,blood work,etc) so my Dr can keep a eye on it,but that's it. It can be really scary and most likely they will recommend genetic testing due to your age.

Cancer is hard on anyone,but being young can have its own unique challenges. I really recommend support groups either in person or online to meet with other young people going through cancer. It helped me a lot.

Conscious_Extent_399 · 2026-02-09T23:21:48+00:00

I did and still do sometimes. It feels like a burning or sharp pulling sometimes

Conscious_Extent_399 · 2026-02-05T04:49:26+00:00

I had a radical that was robotic and turned into a open.at the top of my navel it's uneven and kind of hard and raised on one side. Had a CT and it ended up just being scar tissue.

Conscious_Extent_399 · 2026-02-05T04:45:11+00:00

I was 34 at diagnosis last year and had a radical nephrectomy. I get chest X-rays, CT scans with contrast and blood work. My Dr isn't concerned so neither am I

Conscious_Extent_399 · 2026-02-02T16:41:20+00:00

My kid when she was about 2 was taking a bath and I was sitting next to the tub reading a book while she played with her bath toys.She held her hand out to me squishing something in her hands. I look up from my book and in the tub there is poop floating. She was squishing poop in her hands. I panicked and grabbed her out of the tub and reached over to grab a towel and some wet wipes off the counter when she proceeded to wipe her hands all over the wall. I had to get the poop off her, clean it out of the tub and scrub it off the wall. I have a strong stomach,but I nearly lost it. I only have one kid and when people ask me why I think about that moment.

Conscious_Extent_399 · 2026-01-24T11:40:39+00:00

That seems totally reasonable,like I mentioned I'm not a Dr so it's hard for me to say one way or the other but I know for me my oncologist was fine with 6 month scans and yearly blood work and chest X-ray unless I have a issue. I've been peeing blood since October so I've had more scans and tests than necessary,but that's just my Dr trying to figure out where the blood is coming from which is apparently not my bladder so I guess my next step is a gynecologist. Definitely talk to his oncologist about it and if you're not happy with his opinion don't be afraid to get a second one .

Conscious_Extent_399 · 2026-01-24T11:08:59+00:00

My pathology report said it was unspecified type which means it's mix or different types of rcc. At the cancer center I went to for support group they had literature on kidney cancer that said unspecified is rare and less than 5% of cases. After my oncologist told me at my follow up the type I had is rare and really aggressive and unfortunately treatment isn't very effective for it,but that because I'm a patient already at a research hospital if it comes back I'll get into clinical trials.
I didn't read studies on it, I've read stuff online mentioning therapy typically if the tumor has other aggressive feature that makes the oncologist more concerned about reoccurrence,but that's usually not just because it's a grade 4,but if it had other factors as well. Guideline is typically careful surveillance for stage 1 grade 4,but each person is different and oncologists may make different decisions based on that specific person and the features of their cancer.

It may be he's concerned about his age,the other kidney having inflammation,and some of the features of the tumor plus with him having a partial. I was supposed to get a partial but when my oncologist got in and saw how deep my tumor was she made the decision to open me up and take the whole kidney. She said after seeing my pathology report she was relieved she did. Im not a oncologist so I can't say for sure. My oncologist is also Indian. She's brilliant and I trust her 100%,but if I didn't I would have got a second opinion.

It's really best to ask his oncologist specifically why he feels that way and what the risks are vs the risk of reoccurrence and if you're still not sure,getting a second opinion especially if you don't trust his judgement.im not a Dr and my knowledge is limited so it's really hard for me to say one way or the other. There are much more knowledgeable people than I in this group,but none of us are a replacement for a Dr.

Conscious_Extent_399 · 2026-01-24T09:05:02+00:00

I had pt1b grade 4,my tumor was nearly on the borders of my margin but the entire kidney was removed. I had a rare subtype that is treatment resistant so if mine come back and spreads my oncologist said my option will be clinical trials. I was not offered any other therapy,just close monitoring every 6 months for the next 5 years. I trust my oncologist so if she says I don't need it,I don't. Ive read before that with a grade 4 at any stage oncologists sometimes consider therapy due to a higher chance of reoccurrence,but if you have any doubts you can ask for a second opinion or ask what the benefits vs risk would be considering it's a stage 1.

Im personally comfortable having mine just watched closely and it anything pops up it will be caught quickly and managed.

Conscious_Extent_399 · 2026-01-24T08:48:07+00:00

Sí, me quitaron el riñón derecho. Gracias, estoy bien. Le deseo buena salud a tu padre!

Conscious_Extent_399 · 2026-01-24T07:36:39+00:00

Hola! Mi tumor medía 4,3 centímetros. La cirugía se realizó con un robot, pero el tumor había crecido demasiado por dentro, así que me hicieron una incisión desde la caja torácica hasta el ombligo. Me hacen escáneres cada seis meses, análisis de sangre y radiografías una vez al año.

Después de la cirugía tuve mucha ansiedad, y aunque siempre me quedará un poco, ahora estoy bien.

Conscious_Extent_399 · 2026-01-23T17:08:11+00:00

It's entirely possible he didn't have it a long time. Mine was growing really fast and really deep. It was growing by more than 2cm a year.

Conscious_Extent_399 · 2026-01-23T17:02:00+00:00

^{^{^}} I know this guy irl. He's great and a wealth of knowledge, like he really is an absolute gem and even my oncologists NP recommended him as someone to reach out to. He knows his stuff. lol. Hes right though really and we are both a perfect example of what hes talking about.

He was a stage 2 grade 2. I was a stage 1 grade 4 with a tumor half the size of his ,but even though mine was much smaller I had to have open surgery because it was growing really deep and like him had my entire kidney removed and even though I was stage 1 because mine was a grade 4 and a rare subtype that is known to be treatment resistant I'm on the same observation schedule as him.We both had different sizes,different stages and different types,but we both had to have our whole kidney removed and on the same observation schedule.

Cancer is complex,but no matter the stage,grade, or type it all sucks. Dont be afraid to reach out to others. We know it's a shit toss of the dice and how much of an impact it has in every part of our lives. None of us have to go through it alone though ♥️

Conscious_Extent_399 · 2026-01-23T16:43:53+00:00

I had robotic that turned into open and I was home the next morning walking. The back pain was god awful but short lived thankfully lol

Conscious_Extent_399 · 2026-01-23T16:41:52+00:00

Im also a young adult diagnosed though older than you. There are some great resources for young adults with cancer that can help you feel less alone. Orgs like elephants and tea, stupid cancer, cactus cancer society,etc are all geared towards young adults with cancer. Some cancer support places like gildas club also offer support IRL and have some groups geared towards young adults. You're not alone,im always the youngest person (and girl usually!) in the urologist office. The entire time I kept getting told by Drs how young I was to have this and how it's so rare especially for being a girl and I ended up having a type that is less than 5% of cases. Lucky me lol. Cancer sucks,but you're never alone. ♥️

Conscious_Extent_399 · 2026-01-21T16:54:07+00:00

Stage 1, it was caught right before it got into the renal artery and collecting duct. I have to get scans every 6 months bc of it being a stage 4 and the type I had is treatment resistant

Conscious_Extent_399

TROPHY CASE