Rccc stage 1 returns 7 years later

Sollaura

Hi there!! 41 year old female here. Original diagnosis was when I was 32 found incidentally. I had a 2.4 cm lesion on my right kidney and had an open partial nephrectomy. Was monitored for 5 years and all was good. Year 7 I had a CT which was read as negative only to find out 3 years later which would be just last November that scan 3 years did show a 2 cm mass on my left kidney. Total failure to diagnose. It was only found because I requested the scan 3 years later when my recent scan showed I had a 4cm mass on my left kidney. Very upsetting considering I'm a CT tech. I did recently have another partial nehrectomy done robotically, in early December. Margins were deep and clean and MRI and CT shows nothing anywhere else. Big setback and shocked it came back on the other side. Both cancers were the same kind clear cell renal fuhrman grade 2.  Physically ok and back to work 3 weeks after surgery, now comes the mental and emotional part. Feeling blessed as I went for the recent scan because of pelvic pain thinking it was a stone but turned out to be ovulation and my pelvis was fine. Anyone have a similar story or thoughts on this. Reading these threads, everyone seems so lovely. Many thanks in advance!!

Sollaura

Sorry about all the typos

Sorry about all the typos

icemantoo

Not fair

Sollaura,

When I was nephed 14 1/2 years ago (they were not doing partials then)  the Dr. was not concerned about my 4,2 cm tumor spreading, but said there was always a small chance like 2% that the same RCC could develope in the other Kidney as a new RCC. That is how I see it. You were in that 2%. Glad they were able to do 2 partials. Make sure you are scanned yearly for life  even if it is just an Ultrasound.

 

Icemantoo

Sollaura

icemantoo said:

Not fair

Sollaura,

When I was nephed 14 1/2 years ago (they were not doing partials then)  the Dr. was not concerned about my 4,2 cm tumor spreading, but said there was always a small chance like 2% that the same RCC could develope in the other Kidney as a new RCC. That is how I see it. You were in that 2%. Glad they were able to do 2 partials. Make sure you are scanned yearly for life  even if it is just an Ultrasound.

 

Icemantoo

Thank you

Thanks for your response. They told me they felt it was not a met but a new RCC. I was toled 10 years ago they felt it was unlikely to come back. My brother lost his left to RCC so genetic testing might be good. Wondering about diet and if there is a suggested one for kidney cancer patients. So glad your over 14 years out!

NewDay

Hereditary

I would definitely contact NIH.  They study hereditary kidney cancer and are the greatest experts in the county for it.  The fact that you were diagnosed very young, it was bilateral, and your brother had it are all very strong indicators that it is hereditary.  Some of the hereditary types require different treatment from the sporadic types.  If you are accepted, they will perform genetic testing and scans and treatment all at no cost to you.  

You need to contact the genetics counselor to start the process.  Her name is Deborah Nielsen.  Her number is 301-451-4093.  Her email is deborah.nielsen@nih.gov.

Sollaura

NewDay said:

Hereditary

I would definitely contact NIH.  They study hereditary kidney cancer and are the greatest experts in the county for it.  The fact that you were diagnosed very young, it was bilateral, and your brother had it are all very strong indicators that it is hereditary.  Some of the hereditary types require different treatment from the sporadic types.  If you are accepted, they will perform genetic testing and scans and treatment all at no cost to you.  

You need to contact the genetics counselor to start the process.  Her name is Deborah Nielsen.  Her number is 301-451-4093.  Her email is deborah.nielsen@nih.gov.

Thank you:)

Hi NewDay. Thanks for your response. i only had one grandparent die of cancer at 62 back in 75 and never knew which cancer. All the other 3 died older and none of them had cancer so it's a surprise somewhat, perhaps a mutation? I will get tested and thanks for the number and information. I really appreciate it. Cautiously optimistic but fully understand my odds. I am a PETCT tech too and have seen many people over many years all sizes, shapes and ages go through many different types of cancer. Ive been blessed to meet so many wonderful people. The human spirit never ceases to amaze especially at our most vulnerable points. 

Kat23502

I have to say your story

I have to say your story scares me! I know there is a possibility of mine returning (2.9cm grade 2) but to hear of someone in such a similar situation is scary! I'm glad you are doing well now. 

Jan4you

So sorry, Sollaura,  for

So sorry, Sollaura,  for having to go through this, not once, but now twice! ENUFF!

Glad you got the information on genetic testing!

Let us know how you are doing. We're always here for you!

Hugs, Jan

Sollaura

Kat23502 said:

I have to say your story

I have to say your story scares me! I know there is a possibility of mine returning (2.9cm grade 2) but to hear of someone in such a similar situation is scary! I'm glad you are doing well now. 

Hi Kat! My understanding is

Hi Kat! My understanding is in a situation like both of our the odds of it coming back are unlikely. For you I still feel that holds true. For me, not so much but seeing as my brother had most likely there is a genetic or familiar factor and only a certain amount of kidney cancer fits in that category. I feel so blessed that I found it both times really. One day at time and have fun:)

Sollaura

Jan4you said:

So sorry, Sollaura,  for

So sorry, Sollaura,  for having to go through this, not once, but now twice! ENUFF!

Glad you got the information on genetic testing!

Let us know how you are doing. We're always here for you!

Hugs, Jan

Hi Jan! Thanks so much for

Hi Jan! Thanks so much for your response. I really appreciate it. I'll let you know what I find out:)

todd121

Agree with NewDay

Tumor in both kidneys is a high coorelation with genetic kidney cancer. This is the best studied and understood form of kidney cancer. You owe yourself talking to NIH and get an evalution. Pretty rare to see a second cancer in the other kidney or a metastasis to the other kidney. Not impossible, but rare. Common with hereditary kidney cancer, though.

I urge people even Stage 1 after 5 years, to continue getting annual CT scans. 5 years means something in other cancers. Not sure it means a lot in terms of RCC. I know so many people that have had recurrences way more than 5 years out. Catching it early can mean the difference between it being operable and not operable.

Todd

Sollaura

todd121 said:

Agree with NewDay

Tumor in both kidneys is a high coorelation with genetic kidney cancer. This is the best studied and understood form of kidney cancer. You owe yourself talking to NIH and get an evalution. Pretty rare to see a second cancer in the other kidney or a metastasis to the other kidney. Not impossible, but rare. Common with hereditary kidney cancer, though.

I urge people even Stage 1 after 5 years, to continue getting annual CT scans. 5 years means something in other cancers. Not sure it means a lot in terms of RCC. I know so many people that have had recurrences way more than 5 years out. Catching it early can mean the difference between it being operable and not operable.

Todd

Yes. My docs were even

Yes. My docs were even surprised. I had an instinct it would come back. I wasn't feeling well the last couple years either. It's amazing that a golf ball size tumor can make you exhausted. I do believe mine is genetic and at this point unsure what to expect for the future. One day at a time and will be sure to get a mixture of CTs and MRIs. Early detection is key in kidney cancer. Luckily it's a slow grower!! I read you bio. You are an inspiration and I wish you all the best. Thanks so much for writing!