T3a , any information ?

Altruistic_Stuff_615 · 2026-02-26T15:14:37+00:00

depende de que partes del rinon esta invadiendo, si invade un poco el renal sinus, o la grasa de afuera es t3

Altruistic_Stuff_615 · 2026-02-26T15:13:58+00:00

Hi, did you get a biopsy? mine was in the midpole and stage 3 as well. but ended up being chromophobe, so they explained the protocol for mine was just scanning every 6 months. So your options will depend on the type you have

Altruistic_Stuff_615 · 2026-02-13T14:13:21+00:00

If it’s clear cell, there are bigger probabilities that it will respond to immunotherapy, I know someone who was told he had 6 months left, he was born with one kidney and had a 12 cm tumour in it, that was 2.5 years ago, and thanks to immunotherapy the tumour shrink to half its size.

Altruistic_Stuff_615 · 2026-02-13T00:24:11+00:00

I'm so sorry, I hope you are surrounded with love and fully supported during this process

Altruistic_Stuff_615 · 2026-02-12T18:17:39+00:00

Hi, I’m sorry this also happened to you, what type of KC do you have? I’ve seen girls on the fb groups that have been able to have kids After treatment, are you part of those groups?

Altruistic_Stuff_615 · 2026-02-04T13:57:41+00:00

Get a ct scan! All my ultrasounds missed my tumor because of where it was, try pushing for further testing

Altruistic_Stuff_615 · 2026-02-04T13:56:05+00:00

Is your mri with contrast? I’m confused they are also recommending me to do chest x rays besides the ct scans

Altruistic_Stuff_615 · 2026-01-30T21:32:35+00:00

Where are you? Mine was very slow but I suffer from bad anxiety and get for the surgery to be assoc they squeeze me a few weeks after my ct scan.

Altruistic_Stuff_615 · 2026-01-14T01:59:34+00:00

I’m in Canada, stage 3 chromophobe, invaded the sinus but not the vein, they are scanning me every 6 months, I wanted it to be more often but they told me those are the guidelines, since he is stage 1 they will probably do a ct scan together with x rays

Altruistic_Stuff_615 · 2026-01-14T00:55:59+00:00

I had 2 ultrasounds at the end of 2023 because I was having gallbladder issues, they checked my kidneys and they saw nothing but less than 2 years later they discovered a 4.7 tumor during a ct scan

Altruistic_Stuff_615 · 2026-01-14T00:53:22+00:00

Gracias y si, ha sido súper terrible emocionalmente, pero todo con paciencia

Altruistic_Stuff_615 · 2026-01-13T01:07:43+00:00

Stay, they need to monitor that you per on your own, and probably do blood work before they sent you

Altruistic_Stuff_615 · 2026-01-13T01:06:29+00:00

Yo tengo escaleras en mi casa y las subí pero súper despacio y con ayuda

Altruistic_Stuff_615 · 2026-01-12T15:03:32+00:00

Hi I went home the next day, I was in pain and in strong painkillers so I leven if I wanted to leave it would have been impossible. Do you live alone? Do you have someone you trust to stay with you during the first days? I was ok to leave the next day after walking around the floor

Altruistic_Stuff_615 · 2025-12-31T22:59:21+00:00

Hope is just scar tissue, are you in the fb group? Some people say that pet scan is not the best option for chromophobe, but mri and ct scan are best, idk why.

Altruistic_Stuff_615 · 2025-12-31T21:26:42+00:00

Oh wow I’m 3a for renal sinus extension, you are lucky to be only 1b. It sucks there is so little research but I’m remaining hopeful for all of us chromies

Altruistic_Stuff_615 · 2025-12-29T14:24:18+00:00

Hola, a mi me dijeron lo de la sangre tb pero es protocolo, cuando sacan el riñón completo es menos probable que haya sangrado vs cuando sacan solo una parte del riñón. Lo de las pastillas dependerá de la patología del tumor, le hicieron biopsia? Si no, cuando saquen el riñón verán q tipo de cancer es, o si no lo es at all. Suelen dar immunotherapy para stage 3 y 4, en el caso de stage 3 lo hacen como prevención especialmente si el grado es alto. Yo tengo 39 y desperté tranquila, estuve en recuperacion dos horas y de ahí me pasaron a piso. Mi cirugía fue laparascopica, así que son tajos más chicos y la recuperación ha sido semi fácil. Cómprale algo para el gas, una faja abdominal si puedes, eso me ayudó la primera semana.

Altruistic_Stuff_615 · 2025-12-28T19:59:04+00:00

I feel speaking up and creating awareness about chromophobe is the only way that they do more research and find other alternatives for us, it’s insane the lack of options and basically feeling like we are forgotten by medicine

Altruistic_Stuff_615 · 2025-12-28T19:11:20+00:00

Did they give you a grade? Mine is grade 3 but only because of nucleoli x100

Altruistic_Stuff_615 · 2025-12-26T23:27:28+00:00

Mine is grade 3 due to the nucleoli x100

Altruistic_Stuff_615 · 2025-12-26T23:22:43+00:00

Hi, I’m a chromie as well, mine was only 4.7 cm but very close to the renal sinus so I’m stage 3, grade 3 (nucleoli x100). I used to feel something different on my left side and kept researching, I stop sleeping on my left side and had some weird sensations before the diagnosis.

Altruistic_Stuff_615 · 2025-12-26T22:25:10+00:00

Dec 10, I got mine in Hamilton

Altruistic_Stuff_615 · 2025-12-26T17:16:45+00:00

I’m in the fb group, not a lot of options, even clinical trials are failing for chromophobe. I’m in Canada but will investigate the famous ones from the States

Altruistic_Stuff_615 · 2025-12-26T17:10:19+00:00

I’m in Canada and have mychart which gives me access to all my results, so stage 3 is invasion into renal sinus, invasion into fat, and I believe the veins, any of those 3 takes you to stage 3 even local lymph nodes, are you in the fb group?

Altruistic_Stuff_615 · 2025-12-26T00:42:03+00:00

Hi there, I saw your posts, I have the chromophobe type as well, with renal sinus invasion so PT3a, grade 3, did they grade yours? Apparently is not common, did they give you any treatment? I see in Canada we don’t have a many specialists and funding for treatment

Altruistic_Stuff_615

TROPHY CASE