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Pathology Report - Lymph Node Involvement

todd121
Posts: 572
Joined: Dec 2012

The doctor called with my path report today. I guess my doctor had tried to call a few days back and my voice mail was full. I did notice that, come to think of it.

I'm a T3A N0 M0 and my grade was 3. They were calling me a T1 going into the surgery, so I'm a little shocked. Not very good news, and not what I had hoped for. The T3A was because there was some involvement with the veins. He said it was with the smaller veins and wasn't into the major veins. It wasn't visible on the CT scan.

One of the things that bothered me is that they are saying there was no lymph node involvement. But there were no lymph nodes in the kidney or fat they removed, and they didn't take any nearby lymph nodes. I asked why, and he said they only take them if they see evidence of enlargement and they all looked fine. I don't get that. I thought they would sample a few to look at under the microscope to make sure there was no involvement that wasn't visible via the CT scan (as in the stuff that wasn't visible that involved the veins).

So, they say in 3 months we'll do another scan and see if anything new is there.

My uncle is a medical oncologist (retired). He suggested I try to find a study for adjuvant therapy to reduce recurrence. Does anybody know of anything like that in the Los Angeles area? I wouldn't mind travelling if it had to be done. I would like to try and reduce my chances of this coming back (wouldn't we all!). I'm not too keen on waiting and see, but I suppose there's going to be that no matter what I do.

My nerves are shot.

I don't know who to share this info with and when. That's the toughest thing right now. My uncle said to consider carefully who I tell. He said people will treat me differently for a number of reasons once they know.

I feel a bit awkward coming in here new and asking all the questions you guys have probably all talked about before. On the other hand, this is part of what I evidently have to do, so I'm doing it.

Todd

foxhd's picture
foxhd
Posts: 1900
Joined: Oct 2011

Todd, just to our left in the blue section is a clinical trials finder. May be just what you are looking for. Good luck. Fox.

Joe_fh
Posts: 47
Joined: Aug 2012

They say there is some comfort in company. Maybe so, maybe not. I am the exact same classification as you are, T3a N0 M0 CC grade 3. My classification was due to tumor size and renal vein intrusion. As in your case, they took no Lymph nodes as they didn't see anything wrong with them visually. Pathology showed clean margins.

 I am not that far ahead of you on the curve, (only working on my 3 post op scan) so I have little advice other than to say this place here has provided me with more information on a variety of subjects related to Rcc than all of the doctors put together. I recommend visiting often, these folks are collectively a valuable resource on splitting fact from fiction. On the latter subject, be careful what you read on the Internet. There is so much out there and half of it is outdated information, old statistics, and in many cases one sided in nature. It will scare the dickens out of anyone. These folks can help sort through it all.

 To your question (sorta) about Lymph nodes;

I also asked about this in light of my path report showing lymph nodes not accessed, which I thought should have set the classification at Nx instead of N0. In responce to that question here, member adman sent me the following article concerning the use of that classification:

http://www.ncbi.nlm.nih.gov/pubmed/12050492

(Note article date; July 2002)

While most of that goes over my head, all that medical talk tends to warp my senses, I focused on the conclusion statement which basically says that "When the tumor is 5 cm. or greater, shows pathological necrosis or is advanced grade 3 or 4, lymph node sampling adds little prognostic information.", I took that as saying that it didn't much matter, the difference between Nx & N0 - so I sort of stopped worrying about that particular part of my classification. Maybe it also helps you?

Best wishes, Todd..

Joe

todd121
Posts: 572
Joined: Dec 2012

There is comfort in company. The other information is helpful too.

Thanks.

Todd

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

 

Todd,

Sorry you've been forced to join this exclusive club, and--I'm not trying to overstep my boundaries with your oncologist uncle--but I respectively disagree about not telling anyone. Personally, I believe John's greatest asset since being diagnosed with stage 4/grade 4 clear cell kidney cancer has been the support of family, friends, and support groups like this one on CSN. Sure, a few people were surprised initially, but that hasn't made friendships change; they've simply become stronger. It's also amazing how many people out there have faced cancer or have loved ones being treated for cancer and how therapeutic it is for them and for John to talk and compare notes.

Holding a cancer diagnosis inside and treating it as a secret is IMO unhealthy. While it's, of course, a personal choice, my recommendation is to tell anyone who cares about you. I honestly believe it will make this ride easier. Good luck.

 

foxhd's picture
foxhd
Posts: 1900
Joined: Oct 2011

I also did not want anyone to know about my cancer. It was a private matter. But the word got out. Pissed about it. Now I don't mind blowing peoples mind when they see me. Sometimes I now play the "Cancer " card and watch peoples reactions. Part of our Gallows humor.

todd121
Posts: 572
Joined: Dec 2012

Hi Alice,

I tend to be pretty open with everybody about private information. To be clear he didn't say not to, but he just said to consider it carefully. What he said is that people do treat you differently after they know for a number of reasons. And I'm not sure who he was talking about (work colleagues, boss, etc.) in particular. I will probably ask him a followup question.

I'm not sure I would want my employer knowing the details. But my boss is a close friend after working for him and with him for nearly 10 years.

I haven't told but a couple of people (my closest friends) the result of the pathology report yet.

I can't even figure out if I'm supposed to say "I have kidney cancer" or "I had kidney cancer".

My mother, for example, has some health issues of her own and has some other burdens of her own, and I hate to add to it when there's nothing much she can do about it. My children, similarly. I just hate to burden them with something they can't to much about.

But I have been open about what's been going on with me up to now, and have been very grateful for the support of my family and close friends when I was in the hospital, and also before and after the surgery.

Thanks for your advice (and for Fox's). I can see both sides. I will probably tell all those closest to me, but I will also probably wait until they ask and the time is right. I may not tell my employer or my co-workers. I don't see how it could help my job situation.

Todd

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Okay straying to the lighter side of this topic and "playing the cancer card." Fox--John is a master at this. In the area we live, a little Georgetown like community with bars and restaurants generously interspersed among townhouses, there are  lots of places to walk for a cocktail. My brother enjoys visiting and hitting the local pubs with John. Reason is John is totally unabashed saying--when running into friends and acquaintances--"Did I tell you I have Cancer?" And if John doesn't say it fast enough, my brother pipes in, "Did I tell you my brother-in-law, John, has Cancer?" The way they make these proclamations breaks a lot of ice and eventually produces laughter (right after shock and surprise). 

But the important thing--as John quickly points out--he hasn't had a bar bill since being diagnosed. 

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

Brilliant - that's worthy of Groucho Marx - John should have put that up, on one of the funnies threads!

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

I get both sides of this issue, but in my case there was never a choice.  My family does not keep, and has never kept secrets of any kind, everybody knows everybody's everything whether you want to or not.  Even my grand-kids got to see Papa's new zipper when they visited me in the hospital.  Not saying I agree with it, just saying that's the way it is, and believe me, sometimes I wish it wasn't.  I'd say tell the people you are closest to including your boss, its bound to get out sooner or later and you don't want the people in your inner circle to find out from someone else after its been passed around and perhaps magnified.  Let them know that you are fine, that you would like it to remain private, but didn't want them hearing about via the rumor mill, and tell them you're out as a donor if they ever need a kidney (a laugh will put them and you at ease and says you really are OK).  Getting it off your chest so to speak is also therapeutic, there's just something about saying it out loud that helps you heal mentally.

Just my $0.02,

Gary

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Last fall I was walking through the hallways of the school where I was working and ran into a colleague of mine that I hadn't seen in a while.  She looked at me and declared how fabulous I looked and asked if I would please share my diet with her.  I just looked her straight in the face and said I have cancer.  She was mortifed, but then I added that I didn't recommend losing weight that way and she laughed and agreed.  The ice was broken.  But then, I'm reknown for being truthful and blunt.  It IS a showstopper, but if people see you are comfortable with it, then they are too.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Ok can someone explain to me why i have gained 30 pounds since last year and trust me i cant get this weight off

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

Have you had a pregnancy test Mike?  :)

Have you got any body composition data to indicate whether it's water retention or increased fat that's mainly responsible? (I presume you've not been engaging in a lot of body-building and it's not due to muscle gain?)

What is your BMI now? If you have an iPhone you could check it at e.g.  an app called BMI for ADULTS, or tell us your height and present weight. 

What was your weight before? Since you say you can't get it off, I take it you aren't happy with the new weight. 

If you're up to it, the best way to lose unwanted weight is to have an appropriate diet and take plenty of exercise.  If your diet is sensible, exercise is the key.  Are your activity levels down a lot, or has your diet changed significantly? Sensible diet means plenty of veg and fruit, no/few colas and junk food (with high refined carbohydrate content and fat, which you don't need).  If your alcohol intake has crept up that could be a culprit, if combined with less physical activity.

Has your body-weight been stable in the past and just changed lately, or has it been a problem previously? We're all different but some of us are luckier than others - I've remained within a pound or so either side of 70 kg for the last 50 years (although I put on around 8lbs in 6 days in hospital on a near starvation diet! - all water retention, and promptly loss 20lbs in the next few weeks at home, eating well, before getting back to 70kg and remaining there since.

Have you referred the problem to your GP or to a dietician? If it's really troubling you, maybe you should?

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

FIRST LET ME SAY THANKS FOR RESPONDING,BEFORE MY NEPHRECTOMY I WAS AT 185 PNDS AND YES SORRY I BELIEVE ON A LOW CARB DIET LIFESTYLE.TEXAS I STILL WALK AT LEAST 25 MILES A WEEK USE AN ELIPTICAL AND ALSO BIKE RIDE AN EXTRA 1000 MILES A YEAR ON MY MOUNTAIN BIKE.THE ONLY THING I CAN FIGURE IS THAT SINCE MY CANCER REACCURED IN MY MY REMAINING KIDNEY FOLLOWED BY RFA ON SUCH TUMOR MY GFA FELL INTO LOW FIFTIES,SO I FEEL THIS IS FLUID BUILD UP WHICH IS CAUSING WEIGHT GAIN.OK MAYBE NOW YOU MIGHT RECCOMEND I SEE A NEPHROLOGIST (EXCUSE MY GRAMMER)BUT THE REASON I DO NOT IS I HAVE NEVER BEEN DECLARED NED AND REALLY WITH ONE KIDNEY WOULD IT MATTER.HEY TEXAS JUST TO LET YOU KNOW I THINK ABOUT YOU ALL THE TIME AND I HOPE SO MUCH YOU ARE WITH ALL OF US FOR A VERY LONG TIME

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

Thanks for your kind words Mike.  However, you'll get folks talking when you say "I think about you all the time"  just after I asked you if you've had a pregnancy test!!

You think I haven't lost my sense of humour then?

When you talk about a low carb diet, I hope you're just thinking of refined carbs - sugary things, cakes, biscuits, desserts?  They are best avoided or at least minimised.  Apart from that, we are all best off on high carb diets, with minimal sugar, only enough fat and no more, and moderate levels of protein, even if we're into strength athletics or bodybuilding.

 

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I SEE YOUR SENSE OF HUMOR IS STILL ON THE UPSIDE,JUST TO LET YOU KNOW I REMEMBER RETURNING FROM BREAKFAST ONE EARLY MORNING ONLY TO LOG ON TO CSN AND READING A POST FROM YOU REFFERING TO YOUR RED BODY HAIRS(TRUST ME THAT WAS ALOT OF INFO)HAVE A NICE DAY

todd121
Posts: 572
Joined: Dec 2012

I have been telling little by little and I think it helps.

My partner and I recently were in Vegas and he wanted to get a massage. I decided to let the masseur massage just my neck and shoulders since I had just had surgery 3 weeks ago. He asked about my surgery and I told him I had my kidney removed. He asked if I got good money for it, and I just started laughing. I said no. Nobody would want it. While continuing to giggle I told him I had cancer in it. At first he looked scared, like he'd made a really bad mistake, but then he laughed too because I just kept laughing.

I also made sure to tell people close to me so they heard it from me. I told my boss, but haven't been specific. I do trust him.

So far the only reactions have been caring one. It's probably not a bad thing that we are all reminded that every day of this life is a gift and that we might ought not to take our seeing each other for granted.

Todd

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

Laughter is the best icebreaker you can find, glad things are going well.

donna_lee's picture
donna_lee
Posts: 400
Joined: Feb 2009

Last week, I had the insurance adjuster at the office-short version-one of our dump trucks flipped off a bridge and dropped 30 ft. down the bank, landing on it's side next to a river.  Driver OK, truck totaled, spills cleaned up.

His buddy is an agent here in town, who has been treated for cancer, but was still throwing up from the chemo when he had to call on a client at her home.  He stood at the sidewalk, barfing into the gutter, before going to the door.  The next day, he got told the lady called the company HQ to say their agent came to her house and was so drunk he had to throw up outside.  HQ just said he was going thru cancer treatment, and the lady apologized.  He's still selling insurance.

Donna

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