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Fuhrman Grade IS VERY IMPORTANT - even for small tumors

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

I noticed another good discussion on this topic. When was last at the oncologist, I asked him to "re-tell" me some of the information he shared at an initial meeting - and I was finally in a place to process it.

He showed me a chart with 5-year survival rates for Kidney cancer. Yes, those with stage 1 tumors that are grade 1 or 2 do have a 95 or 99% 5-year surivival rate.

BUT, for those of use with small, stage 1 tumors that are grade 3 or 4, the 5-year survival rate drops to 65%.

I don't put this out there to scare folks, but to encourage those of us that had small, high-grade tumors to be especially vigilant in our follow-up care. It is not enough to say that surgery was our cure - be sure to see an oncologist and keep up the very close monitoring.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

Thank you for your kind words. You seem to do very well in attitude yourself! I've only cried a couple of times in the past 11+ years over this thing. Both were total melt-downs and lasted about 24 hours each (whew). WHAT a waste of good energy! But now it's onward and upward. Lots of play time left - lots of little adventures to be had.

LizB

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

I'm off to the airport for another little adventure so this will be short -
TW you goose! I wasn't saying your communication skills needed work - but MY understanding skills needed work! I've been retired for a while now and even though my background is medicine, I've allowed my brain to retire too!

When I return I will review the video you cited and will also provide the shortcut to that all-day seminar (actually, I believe I put the link in here somewhere).

The immune system is a very strange animal. I have always been extremely heathy (only getting a cold or flu about every 5 years) - so I always thought I could beat most anything. Now, I was a smoker - quit over 20 years ago so most probably that played a significant role in what is happening today.

OOPS - gotta run - my ride is here - off to Frankenmuth, Michigan for the Puppy Bowl! YIPPPEE!

Later my friends.

LizB

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

Liz, you’ve been shown me how to live through RCC with dignity. I would like to assume the Happy Dog picture borrowed from you to carry on the baton. A happy dog is a healthy dog, always. (Please let me know if you think otherwise)

Jon from the other side the Earth

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

Hi Jon - SO glad that you've continued the 'legacy' of the 'happy dog' pic! Yes,a happy dog is a healthy dog - and that's kind of the way I see myself. I am one happy dog and I'll remain healthy as long as my 'tail keeps wagging'.

LizB

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

Here is the u-tube link for the 2012 seminar that was done live via webcast regarding RCC.

http://www.youtube.com/watch?v=jB43eIZAR2o&list=LEv0VRYOltlNQJLCyNMN61NwA&index=0&feature=plcp

Just back from Michigan where my friend and I spend two days of utter joy getting covered by dog slobber! Every year they sponsor the 'Dog Bowl' in Frankenmuth, MI - we attended last year and now this year. I don't care about the events - I just fill my pockets with healthy and safe 'cookies' (actually just a healthy kibble) - and wander around loving all the dogs! The owners are amaing people - who absolutely love their dogs - and enjoy people who love them too. Dogs of every breed, every size - dog lovers HEAVEN!

LizB

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Hi Liz,

You're an inspiration to us all with your courage and determination. Nothing but good energy coming your way.

And you vacation sounds wonderful. I can't think of a more therapeutic vacation than a Dog Bowl, complete with wags and licks. One of my all time favorite quotes is Will Rogers, "If there are no dogs in Heaven, then I want to go where they went."

Jeff2159's picture
Jeff2159
Posts: 103
Joined: Feb 2012

Liz

You say you were on sutent for 2 1/2 weeks and were extremely sick. How many days did it take to feel bad? Been on it for 6 days and so far no side effects.I love your attitude and I hope I can have the same if and when that time comes.

Jeff

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

Hi Jeff - first, let me say how happy I am that you are 'side effect free' at this point. That is GREAT news!

I experienced side effects about day 3 - BP started rising, mouth sores appeared, and fatigue hit like a ton of bricks. By day 7 the mouth sores were debilitating (couldn't eat or drink) and the fatigue and weakness were increasing. Suddenly around day 9 my BP started dropping - significantly. I called the drug company hotline and they had no documentated side effect of HYPO-tension (low BP). I called my oncologist - got a prescription for Magic Mouthwash which really helped the mouth sores but they were not yet concerned about the BP issue. By day 12 I was so light-headed and dizzy that showering proved to be dangerous as I feared I would pass out and fall. I kept on for a few more days until one morning when I got out of bed I collapsed / blacked out and found myself face down on the floor. It was actually quite comfie there! When I got up and tried to take my BP I couldn't get a reading at all which did scare me a little. About an hour later it finally registered at around 90/50 (extremely low for me). Called the oncologist office again and was told to stop taking it. It took about 3-4 days for my BP to normalize and about 10 days before my energy level returned. Mouth sores finally went away after 2 full weeks on the Magic Mouth wash.

It was at that point that I asked myself 'Self? Do you want to live the rest of your life on one of these drugs and be sick most of the time - or do you want to live the rest of your life feeling good as long as that lasts - and play and laugh and travel'? I chose option #2 - and am having a fabulous life. I could get run over by a bus - or a car crash - or fall overboard while whale watching - or or or or - long before the RCC gets me. I've got no expiration date as far as I know - so I am one happy camper.

Good luck to you, Jeff - and I'll pray that you do extremely well on Sutent! I know many people do great on it - I just didn't happen to be one of them.

LizB

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Dear Liz,

You have "lived" with RCC longer than anyone I have known and your story helped me greatly at a time when I needed it most. I know that you have weighed all options and reached the decision that is right for you and I can tell from the tone of your post that you are at peace, once again raising the spirits of those that care for you. To me you epitomize courage, conviction and attitude, should I ever need to make a similar decision I will think of you, of that I am certain. I look forward to future updates on your living, laughing, and travels, and who knows, maybe being at peace is what your immune system needs in order to fully engage.

Rock on,

Gary

foxhd's picture
foxhd
Posts: 2029
Joined: Oct 2011

Gosh, that makes me think. Last year when I passed on the votrient trial, I was also thinking that it would be the last summer of my life. I wanted to enjoy it and did. I did not want to feel miserable heading to the end. What was the point? Liz, I think I have an idea where you are at. You are my hero. Love you Liz.
Fox

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

My sentiments also Fox. In fact I thought Liz ought to be awarded the Freedom of St. Paul but seeing reviews of "Freedom" , maybe the Key to the City would be more appropriate!

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

I don't see myself as a hero. Most would say I'm crazy - and then - maybe I am. But I do know what I want and don't want - and I am truly at peace with my decision. It's been 9 months since this latest bump in the road was diagnosed and I'm doing great. As I've said before - God's driving this bus and I'm just along for the ride. I don't even have to navigate!

LizB

Canadian
Posts: 3
Joined: Jun 2012

Hi All,
I was 36 when I had my right kidney removed. 8 years later I had a tumor removed from my left kidney.
In March, I had a tumor removed from my pancreas. Each time I'm told I'm 'clinically cured' with surgery, cancer-free!
Follow-up is my concern because each time I'm quickly refers back to my family doctor. I have yet to be referred to an oncologist.
What exactly should I expect/ demand?
Kay

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

Your doctors are 'correct' when they say 'clinically cured'. What they're saying is - they've gotten all the tumor that they can see or can find. There is absolutely no way for them (or anyone else) to know whether there are some floater RCC cells just wandering around waiting to move in, unpack and hang pictures somewhere else!

Unless your insurance requires a referral, I would strongly suggest finding a good oncologist and have them take over your followup. It is imperative that you have regular and complete cancer checkups (CT scans / blood work) to keep a close eye on what's going on inside of you. You may also want to get a nephrologist since you've now had one kidney removed and surgery on the other.

Please let us know how you're doing - and prayers headed your way!

LizB

Jrow
Posts: 13
Joined: Nov 2011

Lol.lbinmsp! I love the word picture of,"RCC cells just wandering around waiting to move in, unpack and hang up pictures..." Got to keep our sense of humor!

Rene1234's picture
Rene1234
Posts: 4
Joined: Feb 2013

I had a partial nephrectomy for renal clear cell carcinoma, 2.4cm fuhrmann grade 2, 2/15/11.   I am seeing oncologist Monday and am developing a list of questions for the appointment. I had uterine cancer surgery 10 weeks prior to kidney surgery. My health is compromised by chronic fatique and stress.

My brother just died from liver cancer and my other brother is stage 4 colon cancer (9 years on chemo) and I am the 7th of my birth family of 7 to have cancer. I want to be a strong advocate for myself and am fearful about kidney cancer prognosis. I have other stressors in my life and working on ways to find balance in my life.

I missed a scan August 2012 because the person who was supposed to set it up left UCSF.

I am trying to develop a list of questions for the Dr. ie; frequency of scans, other tests, etc???? I am curious about the UISS

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

First and foremost, I would think, is why haven't you been referred to NIH who would be extremely interested in your case and your whole family. I believe the first point of contact there should be Lindsay Middleton (Phone: 301-402-7911, I believe)

Rene1234's picture
Rene1234
Posts: 4
Joined: Feb 2013

I did a matrix of family cancer and met with a genetic counselor and there was no genetic correlations found. One possibility would have been Lynch Syndrome and they did a DNA test on my brother with colon cancer and found no connection with Lynch Syndrome or any other cancer snydrome. Remains a mystery why we have had every family member with some form of cancer.

What would be the benefit of contacting NIH?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Where do you live? Is it an extremely toxic environment? Are many forms of cancer common among the whole of the local population - your medical advisers must surely have some relevant data.  Unless there is some clear local factor (which I would guess your community would know about) then it seems to me inconceivable that you don't have a genetic problem.

What are the credentials and level of expertise of your genetic counsellor? I would be surprised if they are in the same league as the collective expertise at NIH.  Would it do any harm to supply them with an outline of your Family's history with cancer?  you already have your matrix available.  They wouls doubtless give you close attention and there are many trials conducted there.

Rene1234's picture
Rene1234
Posts: 4
Joined: Feb 2013

I grew up in San Francisco and the genetic counselor was from a teaching hospital, California Pacific Medical Center.  I can contact NIH, I was not familar with what they offer. What I am more concerned about now is what  I should be asking the onocologist  in relation to my prognosis at this point.

dhs1963's picture
dhs1963
Posts: 381
Joined: May 2012

It is 100% federally funded.  If NIH thinks you are interesting, they will cover all costs associated with that aspect of treatment (assuming you are in the USA).  As I am third generation kidney cancer patient, I was evaluated as part of thier familial kidney cancer study.  While being evaluated there, they found a mass on my lung.  They are handling the treatment.  

 

nicmarie75
Posts: 54
Joined: Apr 2010

My mom's medical file says she was Stage 4, Grade 4B - this was back in 1999. At DX she had mets to her lungs and spleen.

Digger95
Posts: 59
Joined: Jun 2010

Either my nephrologist didn't tell me about this or perhaps this is something new since 2000, but he never discussed a Fuhrman Grade with me.  To be honest all I know is that my tumor was a 5 cm, Stage I/II renal cell carcinoma, and that I had a right radical nephrectomy, and that the pathology report said margins clear or something like that.  Is this Fuhrman thing something I need to be concerned about twelve years after the fact?  I now live 2000 miles away from that whole thing but could probably track down my original nephrologist and/or path report if necessary.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Far from being new, Fuhrman grading is past its sell-by date.  It's still very much a standard, though, and will not be dropped for  a while yet.

It's important to know that it's really only applicable to clear-cell pathology.  It's totally useless for chromophobe RCC (where an appropriate replacement already has some currency) and it isn't helpful for papillary RCC either.

It should, perhaps, by now have been replaced by a much more practical measure developed in Glasgow and rooted in inflammation markers.

It would be no bad thing to have had a copy of your original path report but it's not obvious what utility it might have for you now, 12 or more years on.  The Fuhrman grade would be of less importance to you than knowing which sub-type of RCC you have - the odds are that yours would be clear-cell (it accounts for about 3/4 of all RCC cases)  because the sub-type has a direct bearing on the best form of treatment.

Digger95
Posts: 59
Joined: Jun 2010

Thanks, texas_wedge!

I used to have a hardcopy of my pathology report that I carried around with me (I travel a lot for archaeology) but at some point I decided to stop thinking about the RCC altogether so I just shredded it and moved on.  I guess I just didn't want to think about RCC for the rest of my life.  I can write to the hospital and nephrologist who performed my surgery though, and get another copy if necessary.

Jim

Digger95
Posts: 59
Joined: Jun 2010

Thanks for the info, texas_wedge.

I used to have a hardcopy of my pathology report that I carried around with me (I travel a lot for archaeology) but at some point I decided to stop thinking about the RCC altogether so I just shredded it and moved on.  I guess I just didn't want to think about RCC for the rest of my life. I can write to the hospital and nephrologist who performed my surgery though, and get another copy if necessary.

Jim

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