RCC Chromophobe

ourfriendjohn said:

Jnizzi,
The information I

Jnizzi,

The information I mentioned is from a National Institutes of Health paper: "Surveillance Strategies for Renal Cell Carcinoma Patients Following Nephrectomy"

It says:

The greatest risk of recurrence for RCC occurs within the first 5 years after nephrectomy, with the majority of recurrences occurring within 3 years. Although recurrences have been reported as late as 30 years following nephrectomy, rates of 43% in the first year, 70% within the second year, 80% within 3 years, and 93% within 5 years have been reported.  Tumor stage plays an important role in timing of recurrence, with T1 tumors generally recurring between 38 and 45 months, whereas T3 tumors generally recur between 17 and 28 months following initial nephrectomy.  After nephrectomy, the incidence of RCC recurrence has been reported to be 7% with a median time of 38 months for T1 tumors, 26% with a median time of 32 months for T2 disease, and 39% with a median time to recurrence at 17 months for T3 tumors.

What I was remembering was the comment on T3 tumors that was more applicable to me.  Sorry if I caused you any concern.  Sometimes there is just too much information to understand, let alone retain.

Best wishes for many healthy years!

John

I fall into that case, so that's probably what stuck in my head about 2 years being the highest risk time for me. Also, that was my urologic oncologist's plan was to monitor me every  months for the first 2 years, then annually after that to 5 years.

Todd

todd121 said:

Stage 1?

The difference between Stage 1 and Stage 2 is mainly tumor size, with 7cm being the cutoff. I'm pretty sure this is independent of type of RCC or cell histology. I don't think it's possible to have a tumor be 10cm and be Stage 1. Are you sure your pathology report said Stage 1?

Unless I'm missing something or confused (which happens).

Todd

My tumor was indeed stage 2 (T2A, NX, M0).

swijak said:

Sorry Stage 2...

My tumor was indeed stage 2 (T2A, NX, M0).

swijak, could I ask you to let me have some missing data for the db I'm building?  

I'd like to know the grade of your tumor, and your blood group plus confirmation that you live in the US, are caucasian (if not, what ethnicity?) I presume that you have no sarcomatoid element in your pathology but please confirm.

Even on the sample of the 20 odd of us I've collected so far, some possibly interesting facts are emerging.

swijak said:

database

Male, Dec 2010, 49 at time of diagnosis, Stage 2 (T2A, NX, M0), 10x10x8.5, left Kidney (removed), USA, white. NED so far...

Thyroid removed in Aug 2012 (9cm multi-nodule). They said it was not cancerous... but makes me nervous...

Thanks. I've corrected the Stage to 2 .  Were you given a Fuhrman Grade?  It would, like the Stage, be a number from 1 to 4.  If you could find out your blood group also it would help to complete the few gaps in the database.

I was told by an oncologist last year that if there is significant necrosis that is "sacromatoid"...  that is why each time i read a pathology report that says necrosis i think it is such! Thanks for the clarification..

Texas_wedge said:

necrosis

I guess your oncologist meant that if there's significant necrosis you can pretty well guarantee it's a case with a sarcomatoid component, the reason being that you get significant necrosis only when the tumor is very aggressive and sarcomatous change turns any cell type into an aggressive form.  So, if you see a lot of necrosis it's highly likely that you have a sarcomatoid element.

However, like all of you, I wasn't given a choice to forego 'club membership'.

Wedge, in the interest of helping you compile your DB...

46 year old white male; 4 x 4 x 4.4 cm right renal mass on lower pole identified in May, 2010; nephron-sparing partial right renal nephrectomy (Da Vinci robot) performed at U.T. Southwestern University Ctr. In Dallas in July, 2010 (had to wait for robot to be available); stage T1b, non-sarcomatoid, grade 3, Chromophobe with lymph vessel involvement; regularly scheduled 6 month CTs have demonstrated no recurrence; my first-ever bone scan was performed May 27, 2013; I just got an automated email today stating my test results were now available to review online' at 6:00 am this morning; everything on the scan was clear except for "one focal area of increased activity in the right scapula spine (which I Googled to understand is my right shoulder blade).  Test result findings recommend a 'limited CT of the area to check for "anatomical correlation", whatever that means.

It stinks that I have to read my bone scan test result via e-mail, independent of my urologists' consultation on a Saturday morning, but I am smart enough to know that it's a "hot spot", and I'm in the middle of the process where we are going to try and assess if it's a met. Just got this test result this morning, and am not informing my wife until I have had a chance to speak with my urologist. I suppose it could be a benign cause for the single focal uptake area, but suffice to say, I am pretty concerned.  All blood work came back within range.  No crp test or similar was performed.  Just CBC, Creatinine, and full metabolic panel.

This is a wonderful board and forum, with a lot of good information.  I will likely be perusing it from time-to-time, and hopefully, will get some good news during subsequent CT imaging of this hot spot on my right shoulder blade. No symptoms at all in the shoulder blade.  Just feeling really fatigued overall, and have persistent dull pain in the post-operative right kidney area for the past 6-8 months, but all scans came back clear in that area.  I am not deluding myself about the bone scan, but trying not to jump the gun on a prognosis just yet.  Did I mention that getting e-mail bone scan test results delivered to my phone automatically on a Saturday morning, without any Dr. Consultation really stinks?  I am left mostly guessing and Googling as to the report findings.

3 kids: 12 year old daughter, and identical twin boys, aged 10.

Scott in Flower Mound, TX

Scott_Flower-Mound_TX said:

No offense, but I really don't want to join this 'club'.

However, like all of you, I wasn't given a choice to forego 'club membership'.

Wedge, in the interest of helping you compile your DB...

46 year old white male; 4 x 4 x 4.4 cm right renal mass on lower pole identified in May, 2010; nephron-sparing partial right renal nephrectomy (Da Vinci robot) performed at U.T. Southwestern University Ctr. In Dallas in July, 2010 (had to wait for robot to be available); stage T1b, non-sarcomatoid, grade 3, Chromophobe with lymph vessel involvement; regularly scheduled 6 month CTs have demonstrated no recurrence; my first-ever bone scan was performed May 27, 2013; I just got an automated email today stating my test results were now available to review online' at 6:00 am this morning; everything on the scan was clear except for "one focal area of increased activity in the right scapula spine (which I Googled to understand is my right shoulder blade).  Test result findings recommend a 'limited CT of the area to check for "anatomical correlation", whatever that means.

It stinks that I have to read my bone scan test result via e-mail, independent of my urologists' consultation on a Saturday morning, but I am smart enough to know that it's a "hot spot", and I'm in the middle of the process where we are going to try and assess if it's a met. Just got this test result this morning, and am not informing my wife until I have had a chance to speak with my urologist. I suppose it could be a benign cause for the single focal uptake area, but suffice to say, I am pretty concerned.  All blood work came back within range.  No crp test or similar was performed.  Just CBC, Creatinine, and full metabolic panel.

This is a wonderful board and forum, with a lot of good information.  I will likely be perusing it from time-to-time, and hopefully, will get some good news during subsequent CT imaging of this hot spot on my right shoulder blade. No symptoms at all in the shoulder blade.  Just feeling really fatigued overall, and have persistent dull pain in the post-operative right kidney area for the past 6-8 months, but all scans came back clear in that area.  I am not deluding myself about the bone scan, but trying not to jump the gun on a prognosis just yet.  Did I mention that getting e-mail bone scan test results delivered to my phone automatically on a Saturday morning, without any Dr. Consultation really stinks?  I am left mostly guessing and Googling as to the report findings.

3 kids: 12 year old daughter, and identical twin boys, aged 10.

Scott in Flower Mound, TX

Scott,

You made no mention of being under the care of an oncologist.  I would have expected that you would have at least consulted with one after your successful surgery.

If you have not done so, I would suggest now is the time.

It is certainly possible that what is showing "increased activity in the scapula" may be due to an old injury or some other cause not related to cancer.

The best way to determine that would be to seek the opinion of an expert.  But I don't think your urologist qualifies.

I have bone mets at T4/T5 vertebrae (about the level of my shoulder blades); on my sacrum (base of my spine); and left femur (thigh/hip).  In addition to my local oncologist I see a bone cancer specialist about every 6 months.  His prognosis is the most important one for me right now.

NanoSecond said:

Bone met?

Scott,

You made no mention of being under the care of an oncologist.  I would have expected that you would have at least consulted with one after your successful surgery.

If you have not done so, I would suggest now is the time.

It is certainly possible that what is showing "increased activity in the scapula" may be due to an old injury or some other cause not related to cancer.

The best way to determine that would be to seek the opinion of an expert.  But I don't think your urologist qualifies.

I have bone mets at T4/T5 vertebrae (about the level of my shoulder blades); on my sacrum (base of my spine); and left femur (thigh/hip).  In addition to my local oncologist I see a bone cancer specialist about every 6 months.  His prognosis is the most important one for me right now.

NanoSecond,

The advice given to me by my Urologist/Surgeon in 2010 was that the successful partial nephrectomy is considered curative, based on the post-surgery findings.  No lymph nodes showed disease, and the CTs all appear normal.  The research I did in 2010 suggested that a post-op follow-up to an Oncologist for a T1b was not needed.  My surgeon seemed to concur, and said no further cancer therapies were called for, based on my post- op condition In 2010.

I am hoping the Scapula spot is inconsequential. Either way, I will let everyone know more once I learn more from the Scapula CT.  I will make sure an Oncologist or two weighs in on this test result as well.

Thanks so much for the feedback.  Most appreciated.

Regards,

Scott

Texas_wedge said:

Database

swijak, could I ask you to let me have some missing data for the db I'm building?  

I'd like to know the grade of your tumor, and your blood group plus confirmation that you live in the US, are caucasian (if not, what ethnicity?) I presume that you have no sarcomatoid element in your pathology but please confirm.

Even on the sample of the 20 odd of us I've collected so far, some possibly interesting facts are emerging.

are you building a db for chromophobe? Because that is me, too....