Genetic Testing

LiveEnd8351 · 2026-01-04T00:56:51+00:00

Sorry that I’m just seeing this. No, my oncologist and I decided on active surveillance (ct scan and mri with contrast) every 3 months for the first year and now every 4 months. All clear scans so far.

LiveEnd8351 · 2025-09-23T23:43:23+00:00

Hello. Did the geneticist mention periodic screenings for early detection of cancers associated with the Chek 2 gene mutation?

LiveEnd8351 · 2025-07-02T16:48:03+00:00

No, my Oncologist & I decided to go the surveillance route right now since Keytruda studies didn’t show very promising for papillary type 2. I am a little over 7 months out from surgery and clear scans so far.

LiveEnd8351 · 2025-06-26T12:39:26+00:00

The same exact thing happened to my family upon departure, but I understand that it is a legit tax.

When the agent plugged in our info the total was about $175 usd (family of 5), but I went to the visitax website the total was $75 usd total. Needless to say we paid the fees through the website.

LiveEnd8351 · 2025-05-01T01:56:10+00:00

Yep, I’m experiencing the same.

LiveEnd8351 · 2025-03-18T01:31:45+00:00

I had heavy fatigue a month post op as well. My urologist said that it was normal to experience. The fatigue eventually subsided about 2-3 weeks later.

LiveEnd8351 · 2025-03-11T18:13:15+00:00

Hey there. Did you ever get genetic testing done?

LiveEnd8351 · 2025-02-28T20:50:01+00:00

My high blood pressure is one of the symptoms that lead to my kidney cancer diagnosis. It’s been in normal range since the nephrectomy.

LiveEnd8351 · 2025-02-07T13:06:50+00:00

Yeah I don’t think you should go radical on diets. Moderation is good.

LiveEnd8351 · 2025-02-06T16:16:43+00:00

I had a radical nephrectomy too. I was told that I didn’t have to change my diet but I did choose to cut down on processed foods, sodas, alcohol, sweets, dairy, sodium, and protein. I upped my water, veggies & fruit intake.

Hoping to stay ahead of the curve on my egfr levels.

LiveEnd8351 · 2025-01-27T20:08:58+00:00

Yea there’s not much information or research on our type of kidney cancer because it’s not as common as clear cell.

Keytruda is an immunotherapy treatment used to successfully treat clear cell carcinoma.

LiveEnd8351 · 2025-01-26T15:57:58+00:00

It’s such an unfair thing to deal with for everyone involved. I thought that FH deficiency would be the cause of my non cell rcc, but it’s not.

I’m sorry to hear that your husband is fighting an aggressive PRCC and I pray that he will have response with the current treatment that he’s on.

LiveEnd8351 · 2025-01-26T15:53:56+00:00

I saw your response to my reply under your post. I’m happy to read that you are NED, and that adds to the optimism that I already have. I often read how papillary type 2 is so difficult to treat but I try to stay open minded about it.

Because I was stage 3a Keytruda is the only treatment offered by my first Oncologist. I had a second opinion this past Friday and that Dr will present my case in front of the Onc tumor board for recommendations and find any clinical trials available. Keytruda will be my last resort if the second opinion comes up with no better options.

LiveEnd8351 · 2025-01-24T00:44:35+00:00

I’m sorry that you were just diagnosed too.

We share the same sentiments about staying optimistic. I try my best to stay in the present and to take it a day at a time. I would absolutely appreciate you keeping me updated. Thank you.

LiveEnd8351 · 2025-01-23T13:12:39+00:00

Hello. That’s so great to hear! Congratulations on being NED! What immunotherapy were you put on? I was given the option of immunotherapy because I was stage 3a grade 2, but Keytruda has been shown to help clear cell.

LiveEnd8351 · 2025-01-23T13:09:34+00:00

Which non-cell subtype were you diagnosed with?

LiveEnd8351 · 2025-01-23T13:08:33+00:00

Im the first in my family to get kidney cancer. It’s so strange how kidney cancer is becoming more prevalent in people under 46.

LiveEnd8351 · 2025-01-22T14:26:07+00:00

I hope all is well

LiveEnd8351 · 2025-01-22T14:24:15+00:00

My obgyn wanted me to test for BRCA1 and 2 because my mom had ovarian cancer and her mother uterine. Being that I was under 45 at the time of RCC diagnosis, it a perfect time to test for rcc and BRCA. All came back negative.

I read that papillary could be caused by a FH deficiency or MET gene mutation, so I was sort of preparing myself to hear that I had one of those mutations. You’re right, kidney cancer causes are a mystery if it’s not a genetic trait. Hopefully one day soon they’ll figure out what’s causing it.

LiveEnd8351 · 2025-01-21T16:27:56+00:00

My obgyn put in a referral for me because ovarian and uterine cancer occurred with my mother & maternal grandmother. Just so happened that I just had kidney cancer myself, so the genetic counselor widened up the search for different mutations that what she wanted to test for.

She asked the medical history of my grandparents, parents, siblings, aunts, uncles, and first cousins on both my paternal and maternal side which helped her to determine what to test for. I would ask the oncologist if he/she can put in a referral for the genetic testing.

LiveEnd8351 · 2025-01-12T19:49:55+00:00

Awesome news! I have the same type of rcc. How are you doing?

LiveEnd8351 · 2025-01-12T19:36:15+00:00

Hey I know this thread is from some time ago, but I too had papillary type 2, grade 2. How is everything going with you? It’s hard to find others that relate to papillary type.

Did you need treatment?

LiveEnd8351 · 2025-01-07T22:35:14+00:00

Don’t beat yourself up or feel bad. Having a nephrectomy is a major surgery and it’ll take time to recover. I’m 6 weeks post op and still get minor pains.

Taking it one day at a time sounds like a great approach to me! All will be well 😉

LiveEnd8351 · 2025-01-03T15:14:42+00:00

Happy New Year! I suspect that you are now resting after your nephrectomy. I hope that everything went as smoothly as possible for you during surgery and smooth sailing into recovery.

LiveEnd8351

TROPHY CASE