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Pathology Results Finally

sundaydriveguy
Posts: 13
Joined: Dec 2017

T3aM0N0 spread to renal sinus, Grade 2, Clear Cell, negative margin.

Im really bummed. Was hoping for T2b or of course benign.

I have read alot today about T3a and it doesn’t seem to be to positive. Not a whole lot on these forums about T3a either. 

My dad has stage 4 pancreatic cancer and he has beat the odds by surviving over 1.5 years, so I’m going to live by his (and Jimmy Buffett’s) motto, “I’d rather 

die while I’m living then live while I’m dead”.

 

Mike

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

So sorry not what you were expecting

However it is good news that grade is 2

there is quite a few people on here with stage 3

Many reports state that you have a 80% change of five year non recurrence

I wish  you could have had better news 

Did they mention any plans for further treatment 

Annie

sundaydriveguy
Posts: 13
Joined: Dec 2017

I have only spoken to the PA so far and most questions I asked she said the doc will answer on my post-op appointment on the 29th. 

 

80% is a whole lot better then what I was seeing. I'll stick with yours!

 

Mike

stevez
Posts: 51
Joined: Dec 2017

Hey, sorry for the results Mike.  I don't know anything about the T3 either but so many here do and are so helpful.  This journey is scary but I love the motto and live life to it's fullest while we are here.  No promises for any of us.  Best of luck and you will be in my thoughts and prayers.  Steve

sundaydriveguy
Posts: 13
Joined: Dec 2017

Thank you Steve. 

Hopefully we will both be on here for many years reporting our NED results.

kidneystoneblessing
Posts: 25
Joined: Aug 2017

Also stage T3a at 4.0cm (Had focal parenephric fat invasion).  Had two clean scans so far.   While the probability goes up for reoccurrence, many have survived and done well.  Just stay on top of it and make sure you are getting scans every three months for the first few years and scans every six months to a year thereafter.  Since I am only 35, likely will need scans the rest of my life, but remembering to stay positive, live healthy and cherish fun times with my family!

sundaydriveguy
Posts: 13
Joined: Dec 2017

Thank you for the comments!

 

I am also 35. Im torn about having kidney cancer at this age. Sometimes I think it's a good thing since my body is still in decent shape (No diabetes, high cholesterol, high blood pressure, etc.) to fight, but then sometimes I'm worried it's a bad thing. I mean if I got it 30 years early (according to ACS) maybe my body has some sort of gene mutation or some unknown underlying issue that caused it at a younger age.

 

As far as the scans, I'm also a little worried about that. Seeing that we're 35, that's a lot of radiation in our future. Has anyone done any serious research on the radiation doses for multiple CT scans every 3 months for a year or 2? I know it is needed for detection, I just hope it doesn't cause more harm.

 

Mike

Steve.Adam's picture
Steve.Adam
Posts: 463
Joined: Oct 2016

I haven't done serious research but I googled ct scan radiation.

I don't remember the exact numbers but every ct scan is thought to increase cancer risk by 1/1000.  I read somewhere the other day that up tp 50% of people are likely to get cancer at some time.

So, if your probability of getting cancer is 50% then getting 10 ct scans will increase it to 51%

That doesn't sound too bad, but my natural inclination is to minimise the scans. I recently had a reaction to the contrast. Three weeks later the skin is still peeling on my feet.

I think my follow ups in future will be ultrasounds... I will probably try to arrange at least one more ct scan in one or two years.

Steve.

kidneystoneblessing
Posts: 25
Joined: Aug 2017

I forgot to say for scans request MRIs.   So we can reduce radiation exposure  

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

I too am in my 30s. My oncologist is trying to stay away from so many CT scans. For my 1st follow up next month I will have a chest xray and ultrasound. Sorry but I cannot comment on the T3 as I do not know much about it.

randyradiohill's picture
randyradiohill
Posts: 67
Joined: Aug 2017

My path back in October was identical to yours...T3aN0M0....negative margins, grade 2, nothing in the lymph nodes or fatty tissue.  I was pretty freaked out (still am) but my surgeon was optimistic.  He showed me a study which put the probability of reoccurance at around 8%.  I've done a lot of research too and what seems to be an underlying theme is the smaller the tumor the better the prognosis.  We have to be more diligent and I try to stay positive even though it comes back on me every now and then.  

sundaydriveguy
Posts: 13
Joined: Dec 2017

Good to hear from someone else with t3am0n0 grade 2. 

 

8% reoccurrence is a really good number. I think I read the report you're referring to. It had two groups, <=7cm and >7cm, and the t3a group with >7cm had a higher reoccurrence. Well unfortunately, mine was 10.5 cm so I probably have a slightly higher precentage then you. 

 

I guess before researching I thought stage was the only determining factor in survival rate, but now I'm realizing it's got just as much to with tumor grade.

 

Mike

Jobie123's picture
Jobie123
Posts: 32
Joined: Dec 2017

Hey I’m T 3a NO MO 9.5 cm ! I’ve just recently posted !!!! as felt isolated that there didn’t seem many with a tumour my size! Every case is different and that’s what I try to tell my self  x jo

Trucker1's picture
Trucker1
Posts: 82
Joined: Sep 2017

Are you all getting the genetic testing done since you are of such a young age? I'M 40 myself and from this forum and others it is highly recommended.  I get my results back next week.. Kidney stone helped save my life too... 

kidneystoneblessing
Posts: 25
Joined: Aug 2017

yup did the color test and there was no genetic component to my tumor.   However I have a rare subtype called translocation rcc.  Typically happens in young adults and children.  So been told to stay on top of it since rcc is sneaky. 

lobbyist0724's picture
lobbyist0724
Posts: 470
Joined: Sep 2016

I did ask my Urologist regarding genetic test, his response was that I don't have the specific factors that genetic disease has and he doesn't think a genetics test is neccesary at this point. I recalled he mentioned things such multifocality, family history (I have no relative has RCC before) and other factors. I was 42 when I was diagonsed.

stub1969's picture
stub1969
Posts: 920
Joined: Jul 2016

Trucker--did you insurance cover the testing?  At my last scans in December, the doctor I saw mentioned testing.  I'll get to talk it over with my surgeon in May during my next round of scans.

Stub

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

is well worth it. I think it is safe to say I've had more radiation in the past 6+ years than is concievable. However, it was an easy choice. I had a poor prognosis with nothing to lose. Scans every 6 weeks for 18 months. Every 3 months at minimum since. Radiation to mets totaling at least 2 months of daily zapping and scans that go with them. I'm sure I've forgotten multiple x-rays too.

Despite it all, I am healthy and stable at this time. I have upper extremity poly neuropathies from cord and nerve damage but the cancer that was there is wiped out. Not much of a cost for someone never expected to see the summer of 2012.

Maybe if I knew I was cured, I'd be hesitant to undergo scans. But without that confidence, one or two scans a year is a very good insurance. Just think, you may find another primary neoplasm in your lungs, pancreas, or GI tract. It may save your life again.

kidneystoneblessing
Posts: 25
Joined: Aug 2017

I plan to have life long scans.   My doctor is pushing MRIs.  Had one done december.  another one upcoming in march.  Chest pelvis and abdomen. 

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