When were you first diagnosed?

[Ashley_kca]

How long ago were you diagnosed? How have you managed the emotional impact of your diagnosis?

[Junebee]

5weeks ago from first urine sample to all tests and removal now home recovering

[cnichole in reply to Junebee]

Hope your recovery is going well ❤️.

[MICHIGANDAVID in reply to Junebee]

Hello, my name is David. I am the community ambassador. Please ask questions.

[cnichole]

I was diagnosed by accident in April of 2017 at the age of 38 with stage 1 clear cell renal cell carcinoma. Initially I got through the emotional impact by reminding myself just how lucky I was that it was caught by accident.

[MICHIGANDAVID in reply to cnichole]

Hello my name is David. I am the community ambassador.

Please ask questions.

[Junebee in reply to cnichole]

Hope you are doing ok now it’s a strange feeling to feel lucky it’s was found but it’s mixed emotions when everything hits you .

[cnichole in reply to Junebee]

I did recover well from surgery but unfortunately my margins were positive so I have to get scanned every 3-6 months to catch it when it comes back. Now my “good” kidney is full of cysts and stones. But, yes, over the last year there has definitely been many mixed emotions. I’m glad there is now a community to share our experiences. I had never even heard of kidney cancer until my diagnosis.

[MICHIGANDAVID in reply to cnichole]

To help with kidney stones and help with kidney function. My wife’s oncologist has her drinking lemonade daily. It has helped improve her kidney function numbers.

[4thround in reply to MICHIGANDAVID]

All lemonades are not the same. Is there a particular kind?

[MICHIGANDAVID in reply to 4thround]

You have to find one that you like and can tolerate the taste. TKI drugs effect the taste buds.

[Mocna in reply to cnichole]

Do you get CT scans or MRI scans? What grade was your cancer?

[MICHIGANDAVID in reply to Junebee]

With emotions you have to focus on what’s at hand. Sometimes taking deep breaths and taking steps back so not to get angry.

[Junebee in reply to MICHIGANDAVID]

Good advice and try not to panic

[MICHIGANDAVID in reply to Junebee]

It’s tuff. I know being the caregiver for my wife. I have learned a lot during almost 6 years.

[Mocna in reply to cnichole]

Hi... I was diagnosed by accident as well in April of 2018. It sounds like you are in exactly the same situation as me. What treatment did you have? What grade was your cancer? What is your follow up regime?

[Geospatial]

2.5 years ago. The diagnosis was a gut punch and fear took over up until the radical nephrectomy showed cancer had not spread. Nowadays I only feel nervous before my annual ct scan hoping the cancer will not return.

[MICHIGANDAVID in reply to Geospatial]

Just remember to try to relax and take one thing at a time.

[Zebidee]

I was diagnosed on April 3rd 2018, had my kidney removed on April 25th. I turned fifty just a couple weeks prior to this diagnosis. After the initial diagnosis, I was calm and centered focused on my husband and adult children. When I went back to work and life resumed its normal shape, I really struggled. The shock and trauma of it all has been a lot to process. I am feeling more stable and ready to get back into the "regular flow" of my life now, but I'm approaching my first six month scan. I'm feeling a bit nervous.

[MICHIGANDAVID in reply to Zebidee]

It is a lot to process. Just take one thing at a time and do one day at a time.

[njdolfan]

I was diagnosed on a fluke on May 18th, 2017. Let me start @ the beginning....I am an abnormally high % for breast cancer and my oncologist sent me for a PET SCAN in April 2017, it only showed uptake in my thyroid and lungs. Had biopsy of thyroid and showed I had HASHIMOTO'S disease. Then I went for MRI full torso, from neck to knees, to check lungs. Lungs turned out to be nodules, a cyst on left lower skull, cyst on right kidney, clear renal cell cancer left kidney and a fatty liver. October 5th, 2017 I had a partial left nephrectomy(robotically done) and my tumor was genetically tested and my oncologist just told me I had the gene for clear RCC. No RCC in my family, stones with my dad, and his brother got transplanted in 1983 (kidney) other than that no kidney cancer.

Irony of it all, I worked for the Kidney/liver transplant office 15 years before being diagnosed!

[MICHIGANDAVID in reply to njdolfan]

How are you doing now? Are you on a TKI - like Votrient?

[njdolfan in reply to MICHIGANDAVID]

Sorry for not checking sooner. I am doing very well! Have to go every 6 months and get CT SCAN and bloodwork to keep an eye out for problems. Since my surgery was robotically done I have 6/7 one inch incisions hopefully within the next year I will be able to get a vine tattoo and rosebuds at each point to cover scars.

[Marz822]

2 and 1/2,years ago. It has been hard to think about it everyday. I try to stay positive and not worry. It’s hard.

[4thround]

I was diagnosed by accident also, 12 years ago. I was 8 years clear and then it was rediscovered again in my liver. It was confined to the left side and removed but is now back throughout the liver. I see all the replies, anger, anxiety, tears are all part of the response to getting a cancer diagnosis. I have been through a divorce, loss of a son to sarcoma, a move to a new place after 30 years, all 4 my kids have gotten married, I went back to work as a nurse, and now have 3 grandchildren.

All this to say, I try to focus on life and living. I do better to stay involved in church , community, family and things I am interested in. Balance in exercise and being with friends, etc I have learned not to mention my diagnosis to most people so conversation naturally goes to those more positive topics. I guess its easy because I moved to a new place. Getting this diagnosis is life changing but my experience has been that the ups and downs of it only change my life if I let it.

[sewon]

I am 2 weeks post surgery and really only received a confirmed diagnosis today of high grade stage 2 papillary urothelial carcinoma, invasive.

[MICHIGANDAVID in reply to sewon]

Take one thing at a time and do one day at a time.