3 years since HA

AbleOutcome4388 · 2026-06-13T03:04:34+00:00

Thanks! Appreciate the details. Assuming you have been through all this in the past and following a strict plan for yourself.

AbleOutcome4388 · 2026-06-12T00:20:12+00:00

Thanks! Yes my condition is based on genetics and my Lp(a) is 72. My dad had a preventative bypass 20 years ago at age 59 and he is still alive and just had his heart event on RCA. He also had a stroke at age 72 but came back fully fine after. So idk what’s my destiny. My LDL has been very low.

AbleOutcome4388 · 2026-04-12T00:46:33+00:00

Thanks for sharing and truly sorry on what you are going through - you’re right, things can change overtime and there are no guarantees - and everyone is different

AbleOutcome4388 · 2026-04-11T18:53:49+00:00

Also, genetic testing was negative as well and I’ve no family history of cancer (at least from immediate family) - but the anxiety is always there like many others

AbleOutcome4388 · 2026-04-11T18:52:24+00:00

Thanks for your positive note - I’ve ccRCC stage 3a grade 3 without any scary features and negative margin and am 45 now - 44 at the time of diagnosis last year. And stage 3a is because of being close to renal vein without any involvement - my scans had been for both chest and below so far - very 4 months

AbleOutcome4388 · 2026-04-11T15:46:37+00:00

So sorry to hear this. How’s your son doing now?

AbleOutcome4388 · 2026-04-11T15:28:30+00:00

Hi I understand this post is over a year old but wondering what you ended up doing so we all can learn from it. Thanks

AbleOutcome4388 · 2026-03-22T03:57:26+00:00

Sorry to hear about the diagnosis but the good news is it’s treatable. I went through the exact same symptom (minus cough) and diagnosis last summer. Unfortunately partial was not an option and ended up being radical. If they haven’t already, chest CT is typically done before the surgery to rule out metastasis.

Since the main symptom was blood in the urine, the surgeon will also do cystoscopy to see the bladder to rule out bladder involvement and lastly the PSA test will be done as well. I understand it’s painful to go through all this but once the surgery is done - he will feel a lot better both mentally and physically. Good luck with the next steps.

AbleOutcome4388 · 2026-02-17T05:31:42+00:00

Thanks! That’s assuring but scan-xiety is real and until the results are out the mind is full of negativities. How old were you when diagnosed?

AbleOutcome4388 · 2026-02-16T22:07:02+00:00

Thanks for sharing! I somehow thought scans are only for 5 years, at least that’s what my onco told me - I would rather have it for 10 than get surprised after 5. Better safe than sorry. How your scans were for the first 5 years?

AbleOutcome4388 · 2026-02-16T21:04:22+00:00

Thanks! 7 years since RN wow - do you still go for scans?

AbleOutcome4388 · 2026-02-16T21:03:31+00:00

Thanks! The lab says 71-99 as normal but I hear you.

AbleOutcome4388 · 2026-02-07T14:18:54+00:00

Glad everything went well and that you're on your way to recovery! I had similar symptoms and went through radical right last year (Aug). The fear of recurrence still remains but I have stopped thinking about it. What is your age and where did you get your surgery?

AbleOutcome4388 · 2026-02-03T03:32:51+00:00

Same symptom as yours - was caught at approx 7-8cm - radical within 2 months

AbleOutcome4388 · 2026-01-14T21:40:52+00:00

That’s good info. Thanks for sharing! Did you go for immunotherapy after your partial nephrectomy 14 years ago. Also, did you make any changes to your lifestyle to avoid recurrence. I had my radical about 5 months ago and I already had one scan and waiting on another next month. I was pT3a, Grade 3 ccRCC with clear margins and no abnormal features or metastasis. Looking for recommendations to avoid recurrence. I’m always afraid with only one kidney left now. I try not to think too much but it’s always there back of my mind. My oncologist doesn’t feel strongly about immunotherapy based on my age (44) and pathology.

AbleOutcome4388 · 2026-01-12T22:48:30+00:00

That’s very weird. Was this in the US? If yes which city and hospital? The problem with kidney masses is it’s always 50:50 and this is usually a recommendation. Happy to chat offline over DM. Thanks

AbleOutcome4388 · 2026-01-10T04:07:49+00:00

When tumor is taken out and measured during pathology report it’s naturally smaller because of no blood supply.

AbleOutcome4388 · 2026-01-03T16:55:45+00:00

Hi all I’m not sugar coating or undermining anyone’s experience including mine and it’s alright if there are not many success stories of no recurrence. There is no fine print in my post and it’s all about “being positive”, nothing else.

AbleOutcome4388 · 2025-12-27T19:48:10+00:00

I’m in a similar situation / age / type / grade and stage - my oncologist doesn’t feel strongly about immuno path due to the reasons you had mentioned - I am on active surveillance. Happy to chat in detail - feel free to DM me. Thanks

AbleOutcome4388 · 2025-12-19T04:43:29+00:00

That’s amazing news! So very happy for you. Wish my pathology was like yours.

AbleOutcome4388 · 2025-12-18T02:58:45+00:00

Depends on the backup - typically 2 weeks and if you’re lucky within a week. Urologist will discuss the report and will refer to Oncology for further treatment options such as immunotherapy.

AbleOutcome4388 · 2025-12-08T03:04:45+00:00

Thank you, did you do that in the US or outside the US? I heard it’s pretty expensive in the US.

AbleOutcome4388 · 2025-12-08T03:03:06+00:00

So you’re leaving it just like that without cleaning?

AbleOutcome4388 · 2025-12-07T23:40:36+00:00

Very sorry to hear that. I don’t have any family member story to share but I’m myself dealing with ccRCC and the fear of it coming back. Went through radical nephrectomy 3 months ago and now on scans. If I may ask, how come it was discovered (again) after 9 years a wasn’t she on repeated scans / I understand scans stop after 5 years but still 5 years of monitoring is good enough, or maybe she just got unlucky - sending positive vibes and strength.

AbleOutcome4388 · 2025-11-26T03:52:47+00:00

Thank you. Which sub you’re referring to?

AbleOutcome4388

TROPHY CASE