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Pathology Results

ytak28's picture
ytak28
Posts: 12
Joined: Jan 2012

Hi All: Just found out I get my pathology results March 14th, I asked the doc after the surgery his opinion on what he thought the "tumor" was he said he was pretty sure it was Clear Cell Renal Cell Carcinoma. So I'm not scared of hearing the "C" word- just need some suggestions on questions to ask. How important is it to know the stage and the Fuhrman gradeit. I just want to make sure I walk away with all the info I need.
Each day everyday activities get a little easier, I just can't wait to sleep in a different positon then lying on my back grrrr!!! The human body really is an amazing thing!! Hope everyone is doing well :)

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi,
Make sure he explains everything, every single item, on the pathology report, ask questions if you don't understand something even if the question sounds dumb to you, and make sure you get a copy of the report so you can refer back to it later. Yes, stage and grade are very important for your prognosis. The lower the stage and Fuhrman grade the better the chances of it not having spread. Ask about diet and medication restrictions if he doesn't mention anything about them. Ask about future followup visits -- how often, what kinds of tests, should you be seeing an oncologist. All will be well now that you've gotten rid of the beast.
Mike

foxhd's picture
foxhd
Posts: 1872
Joined: Oct 2011

As Mike says, "Get a copy of your results." The information to be given to you could br fast and confusing. It's better to be able to digest it on your own time and terms. Good Luck. We've plenty to share.

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

get copies of your reports and also get your own copy of every scan. Keep your own file so that if you go to a new doctor (oncologist or nephrologist), there will be no delay because you can bring everything they may need. BUT don't let THEM keep your copies - they can make their own - you ALWAYS keep your own copies.

Stage and grade are critical information to have. Those should be clearly defined in the final pathology report. Take your copy with you to your followup visit and if there is something that you have questions about - ask. A good doctor will welcome your questions and will be happy that you, the patient, want to be actively engaged in your own health.

Sleeping is a challenge after this surgery - but soooooon! Then you'll KNOW you're ready to take on the world again!

Take care -

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Hi Katy,

I had terrible back pain from constantly lying on my back as well. In the hospital they gave me one of those long pillows that run the length of your body (I named mine "Billy" ;-). With that pillow I could lie on my side with my upper leg supported. I didn't have open surgery, but maybe something like that could help you.

Beingbless
Posts: 46
Joined: Mar 2012

Hi,
I just joined the blog, i just have my right kidney removed due to cancer tumor was 5cm. My doctor did not go through everything on the report, just told me i am cancer free, no treatment is needed. Now, I'm checking into the pathology report has indicated vascular:invasion. The rest are negative. Does anyone know what does it mean?

Thank you so much.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Beingbless,
This is the worrisome part of my pathology report also. About a year ago, I asked my urologist what it meant and he explained it a bit but told me that I shouldn't worry about it. Now I don't know if he meant it wasn't all that important in my case or that it's important but there's nothing I can do about it so don't worry. I really don't remember what he actually said because I haven't been worrying about it. However, I have read up on it a bit lately and have come to the conclusion that, although I am not 100 percent certain, it appears to mean that the chances of the cancer spreading are greater than if it wasn't present. In other words, it is just as important as stage and grade in determining prognosis. Most of the sites online that talk about it are technical medical papers. I have sent an email to my urologist asking for a clear explanation of what it is and how it affects my prognosis. I will post that information when I hear back from him. You might want to check with your doctor as well and let us know what you learn.
Regards,
Mike

Beingbless
Posts: 46
Joined: Mar 2012

Hi Mike,
Thanks for the note, and thanks for sending out a note to your doctor about it. I was told not to worry also. Now, I saw some blood 'flakes' in my urine after three weeks of surgery, I started to get worry now.

Any help is appreciated.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi,
It could be unrelated but absolultely check with your urologist about the blood.
Mike

Beingbless
Posts: 46
Joined: Mar 2012

Yes, will pay attention this weekend, and will check it out next week. By the way, after almost three weeks surgery, I still experience pain in my abdomen and lower back. I called the doctor yesterday, he said the incision is healing now, and this might be due to they moved my bowel system during the surgery, now, it's just trying to heal. To be honest, the answer is pretty confused. I was thinking I should feel better each day.

Any kind of experience like this or did you ever hear about this?

Thanks.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Pains in various internal places are definitely common. I had sporadic pain in my left side for almost a year. Overall you should slowly feel better day by day but you may experience things like this for a while. You did the right thing calling your doctor. Don't be afraid to do that whenever you experience anything you think is unusual.

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Mike and BB,

I am not sure if it is the same thing or not but my pathology report showed renal vein invasion. My urologist said not to worry, he got it all but since it was in the vein, I could still have cancer cells in my blood. That was enough to steer me to an oncologist who told me I was "intermediate high risk" for recurrence because of the invasion. I am starting a clinical trial on Thursday for a drug they are testing to prevent recurrence. I pray that vascular invasion is different and does not increase risk, still push your drs and get as much info as you can. Knowledge is power.

Health and happiness to all,
Wayne

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Thanks, Wayne. I have already sent an email to my urologist and hope to hear from him early this week. I'm not sure whether vascular invasion is different than renal invasion or not. This seems to be one of the most difficult things to get plain-English information about. But from the online medical papers I've viewed, my layman's impression is that risk is increased if the pathology report indicates that lymph-vascular invasion is present. I was just getting used to not worrying so much about mets. It is what it is, I guess.

Best of luck with your clinical trial drug.

Mike

Beingbless
Posts: 46
Joined: Mar 2012

Hi Wayne and Mike,
You guys have been great help. Mike, let me know if you hear back anything from your urologist,

I am going to list out my questions to my urologinst for my next appointment. It probably another week or so,

But, I found this forum is so helpful, I really gain so much knowlege by just reading through some of them, I wish I know it prior to my surgery. oh well, now, I hope I can use my own experience to help others one day

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

That's the spirit Beingbless - we hand on the baton but it's great to see that some members here, like iceman and garym, have been carrying the baton for years and are still running strongly.

Beingbless
Posts: 46
Joined: Mar 2012

Way to go guys, carry on the good work.you will never know how many millions people reading this forum will beneficial from just this

I will try my best!

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Turns out my urologist is away all week. So I won't hear back from him until next week. Waiting is the name of the cancer game -- waiting for appointments, waiting for surgery, waiting for test results, waiting for answers to questions.

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

Mike,

I think this paper will probably tell you all you need to know about the topic

http://onlinelibrary.wiley.com/doi/10.1046/j.1464-410X.2002.02661.x/full

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Thanks, Tex. This is one of those medical reports that are pretty much gobbedly**** (there are those automated asterisks again). I'd like to see something in plain English but haven't found anything that qualifies. I have an overall impression of what this says, but if you asked me to explain the paper, I'd be at a loss. My overall impression is that some medical people think it is a factor for determining survival, but it is not a prevalent view yet. I'm thinking of asking my urologist to move into my house so he will be available whenever I have a question.
Regards,
Mike

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

Now that's an "invasion" you might wind up regretting.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

I have had debated the efficacy of the way trials are conducted, and Wayne, I think has decided on a trial. I myself had vascular invasion, still considering a trial, but there are varying aspects of this. Gerald White (the others can point you to him or find hin by a search) has stated his views on how trials are conducted.

Here are some questions and answers I had with a surgeon - I think he made sense, along with Dr Dutcher here in NYC. I am also told "In the largest paper of this type reporting outcomes, only 26/1215 (2.4%) of patients had renal vein invasion with a tumor less than 4cm." - i.e. the situation I find myself in is very rare, and yet, I must deal with it.

(Q1) What is appropriate level of monitoring ? Does it help to monitor and detect earlier ?
(A1) There is no general accepted surveillence and many people have their own ideas. I will leave this up to you and your physician of choice. I would be a little more aggressive because of your age and health (more imaging).

(Q2) By monitoring alone, have I not already missed the bus - should they detect something ?
(A2) In theory, yes, but that is only assuming that we have an effective treatment to kill any residual cancer cells. And we do not have any treatment that has shown a benefit in patients without measureable metastatic disease.

(Q3) I went to a hospital, they presented a double blind clinical trial for Pazopanib or Placebo.
(A3) A clinical trial is a good idea as long as you accept that there is no evidence showing benefit in your case.

(Q4) I could go to another country and get on the drug v/s go on a blind trial, and have them monitor me. Any argument against this ?
(A4) I wouldnt do this personally. It is not as if there is any known agent which can help you but is unavailable. I'm sorry I cannot give you specific answers. Honestly, I would be worried if anyone tries to do this since the studies have not been performed that would allow definitive answers for you.

I am also told that going on the drugs in trial (i.e. Evorolimus, Pazopanib) is not the silver bullet, we expect them to be. There have been several trials since 2005 which they haven't published results - for a reason ?

So why deal with the side-effects ? Why weaken your immune system further ? They tell me altruistic purposes, help man-kind, well, fine, forgive me for saying this, I can only help others if I am around, so first tell me how I can live ? No one can answer this one. So, the emotional altruistic nonsense doesn't fly with me for now.

At a deeply cynical level, I feel, these trials can be rigged, with people with better prognostic indicators receiving the drug and thus skew the results. My faith in the medical community, from what I have seen, is well, doesn't exist (I was going to say shaken).

The debate continues...I think going on the drug outside trial, I don't want to do. So question remains, and answers are welcome, if I haven't already frustrated the others by now...do I do the trial ? Thinking...still thinking..

Wayne, thank you for your replies. I find hope in what you emailed me.

Tex - likewise.

Gary, thanks.

Raj.

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