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Stage 2a - Clear cell - Grade 3 - advice appreciated

Jmat23's picture
Jmat23
Posts: 11
Joined: Mar 2014

Hi guys,

John from Australia here. Long time reader first time poster. Let me first say the support and advice you guys provide to members of this forum is amazing and inspiring.

At the age of 34 in 2012 I was diagnosed with RCC - clear cell in my right kidney. I had a radical nephrectomy 15th October 2012 and recovered really well physically. Of course the main source of anxiety is the worry that the cancer will come back. I have found that while my doctors were extremely professional, they were not very forthcoming with details when I asked about my pathology report and prognosis in particular. Therefore I was hoping to get a bit of advice from the knowledgeable people on this board. I will of course look at getting a better doctor if my next follow up scheduled in a couple of weeks is unsatisfactory in terms of info provided.

I was hoping you could please advise if there is a good chance the surgery has cured me of the cancer given the info below. I understand everyone is different and every kidney cancer is different but appreciate any advice or info you guys can provide bad or good! I also understand that survival stats are pretty much close to useless when applied to individual cases although I did check out some of the calculators on various sites.

The main thing that worries me is that the tumour was classed as a grade 3. Does this mean that the cancer has a good chance of recurring due to it being a higher grade? A plus was that I had a follow up CT scan and chest X-Ray nearly a year after surgery (Sept 2013) due to an admin stuff up at the hospital (it should have been at 6 months). The scans came up all clear which was a huge relief Smile

Type: Clear cell

Max tumour dimension: 75mm

Stage: T2aNxM0

Nucleolar grade: 3

Tumour location: Originating mid pole right kidney. Tumour was abutting sections of the renal capsule but not invading past it. Tumour encapsulated within kidney capsule.

Surgical margins: well clear

Perinephric fat involvement: Not seen

Renal sinus fat involvement: Not seen

Renal vein invasion: Not seen

Tumour necrosis: Not seen

Lymphovascular invasion: Not seen

Sacromatoid differentiation: Not seen

Pelvicalyceal system involvement: Not seen

PS I typed the above path report details from memory so excuse any spelling mistakes. Thanks all for your help and god bless!

-John

 

 

 

 

icemantoo's picture
icemantoo
Posts: 1622
Joined: Jan 2010

John,

 

I perceive a little apprehension with your doctors because of a lack of certainty with your prognosis. Unfortunately at 7.5 cm (which automatically makes it at least Stage 2=over 7 cm) there is no certainty, While your prognosis is good for the surgery being a total cure the percentages are shaved off a few points from the 95% cure where the tumor is say 4cm and stage 1. Your doctors are paid good money to interpret your prognosis it is just that in many cases you can not be certain nor can they.

 

On the other hand your doctor could be just a poor communicator. If this is the case seek out a doctor who communicates better. If it is merely frustration with the fact that the doctor is not certain enough, that goes with the territory.

 

These are my thoughts. Others may chime in with similar or different thoughts.

 

Icemantoo

Darron's picture
Darron
Posts: 239
Joined: Jun 2013

I had mine removed on Oct 16 2012.

Good you are NED since they really should have scanned at 6 months!

see if they can scan chest and abdomin next time and save the x ray. I think the scan if the lungs shows more detail.

i am not good with the grading details, but I think at 7.5 cm, you are always stage T2. No signs if spread and clear margins. Keep a close eye on it and you should be fine. If it does come baxk, catching it early is key.

sirry I am not good in the technical stuff, others will help more, I am sure.

Jmat23's picture
Jmat23
Posts: 11
Joined: Mar 2014

Thank you both for taking the time to reply. It's probably more a combination of my doctor not being clear enough in his communication (follow up is via public health system rather than private so it is quite busy) and me wanting certainty that they cannot provide.

Hopefully cure rates for early Stage 2 with no local invasion are still good. Fingers crossed!

DSFrey's picture
DSFrey
Posts: 61
Joined: Jan 2014

http://nomograms.mskcc.org/Renal/PostSurgery.aspx

 

Of course take it for what it is, and remember that your case of cancer is unique to you. So use the results as something to think about but not take with absolute faith.

 

 

Jmat23's picture
Jmat23
Posts: 11
Joined: Mar 2014

Thanks for the link mate! I have mainly used this link: e/index.phphttp://www.lifemath.net/cancer/renalcell/outcom but have not seen the one you posted.

Just wondering if you know the difference between local and systematic symptoms? My only real noticable symptom was blood in my urine. Not sure if this would be classed as a local or systematic symptom. Thanks again. 

DSFrey's picture
DSFrey
Posts: 61
Joined: Jan 2014

Hematuria, i.e. blood in the urine is classed as a local symptom since it is the tumor itself that is causing the bleeding. Note I've also seen articles that say that the presence of systemic symptoms, e.g. fever, weight loss, etc., has not shown significant change in recurrence probability regardless of what this calculator suggests.

Jmat23's picture
Jmat23
Posts: 11
Joined: Mar 2014

Thanks for the explanation DSFrey. While I of course take the results of nomograms and survival calculators with a grain of salt the info you provided does set my mind at ease somewhat.

I found the below study pretty interesting as it seems to relate specifically to grade 3 tumours, even though much of the statistical jargon is beyond my understanding. I had not come across any articles referencing elevated CRP levels previously.

http://jjco.oxfordjournals.org/content/39/9/588.full

Srashedb
Posts: 215
Joined: Dec 2013

I have made it a practice to NOT read anything about renal cancer that is several years old; the link you attached was 2009.

Sarah

Jmat23's picture
Jmat23
Posts: 11
Joined: Mar 2014

Valid point Sarah.

I guess that study is obviously out of date and may have been proven incorrect later/improved by more research as well as much better treatments being available which impact on stats. Still I found it quite an interesting read personally

Djinnie's picture
Djinnie
Posts: 866
Joined: Apr 2013

Hi There, 

No one can say with any certainty that you are cured! There is always a chance it will return irrespective of size and grade. I had a very small tumour on my kidney in 2003 which was ablated, I was fine for ten years and then the cancer returned. All you can do is to keep up with your scans, and take care of your self. Keep fit and eat a sensible diet with little to no sugar. You sound like you are doing well, keep a positive frame of mind and keep stress levels low. Here's to a cancer free future:)

 

All the best,

 

Djinnie x

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi John... welcome to our club, that no one wants to join..  There are a few of your country mates here...   There are so many advancements in Kidney Cancer that it isw difficult to keep up.  The drugs I have been on so far were not available 5 years ago.  One was approved only in 2011..!   And there are a bunch of drugs being tested right now that show even greater promise..!  And there are a few drugs waiting to begin testing..  The future is bright, indeed... although it may seem dim at times.  This is a game of staying healthy until the next better drug shows up.  There are also people here that are on some awesome clinical trials..!  Now the hard part, some countries do not approve as many drugs as others..  But, as these new drugs get approved here in the States, that tends to help (indirectly) people in other countries some times..

However the bottom line is, try to keep living..!  As a great pal here said..  Any time spent worrying is wasted time, you do not get it back...

Ron

Jmat23's picture
Jmat23
Posts: 11
Joined: Mar 2014

Thanks for the reply Ron. Definitely not a club I thought I'd ever join. I see new articles on different treatments for RCC all the time targeting different pathways etc, amazing and promosing stuff. Really glad the treatment landscape looks so much better than it did even 5 years ago and there is hope.

I really hope your treatment is going well for you.

And you are right. Due to my nature I like to research things and read as much as I can and look at as many survival graphs and nomograms as I can. At the end of the day it is what it is and there's no use worrying too much about it as hard it is not too. Thanks mate.

Jmat23's picture
Jmat23
Posts: 11
Joined: Mar 2014

Thanks Djinnie Smile Sad to hear after all that time your cancer has returned. I'm sure you will battle away and beat it once and for all. It staggers me that stray rcc cells can hang around the body for such a length of time.

Next scan is due in a couple of weeks (super nervous). I've been trying to stay fit running and playing basketball etc. I've also cut right back on sugar and have tried to avoid eating foods with preservatives and additives for all it's worth. I also read a bit about anti-angiogenisis foods. As with all things I'm not sure if it will really help but given the foods are natural and are good for you anyway there's no harm in trying!

Thank you so much for the well wishes.

John

donna_lee's picture
donna_lee
Posts: 428
Joined: Feb 2009

In 2006, initial Dx at T2N2M1.  Similar to what your pathology reported, only tumors were larger in the kidney, one in liver and a set of nodes.  The surgeons felt certain that they got "it all."  That statement must be read as "we examined everything and that is the only sites that we saw that remotely looked like there was cancer present."

This is why there are follow-up exams-CT or Xray/US.  I was put on a 3 month schedule for CT of Chest/abd/pelvis.  Between the 9 month and 12 month CT's, a single node was observed to be enlarging. A fine needle aspiration biopsy was positive, so I had surgery to remove the node.  A 4" incision and a 4 hour surgery, because the node was attached to the duodenum and the inferior vena cava.

My oncologist then put me on every 6 month CT's.  The difference between the 6 and 12 month scans showed another node enlarging, located in back of the bifurcation of the aorta in the low pelvis.  More surgery, and it was positive for Clear Cell RCC, too.

What I'm saying is that the doctors cannot always "see" everything.  There may be cancer cells present in the body...they may die naturally, or develop into something that becomes obvious on a test.

I cannot stress enough the need for regular follow-up exams.  That and having your primary care doc monitor what else is happening with all your systems.  Your blood pressure should be kept under control. maintain a "proper" diet, exercise, etc.

I haven't received any of the kidney cancer drugs, as most of them were still in trials at the time I was first diagnosed.  And with trial drugs, they have to have a patient with an active site(s) to monitor the effectiveness of the drug and any side effects.  And since all mine were able to be surgically removed, that was the choice I was given.

In 2006, I was told I might have 5-7 months to live based upon the extent of the mets and the organs where I was experiencing secondary symptoms (liver & gall bladder).  That was 8 years ago.

Kick A$$, John.  The actual CT is a piece of cake.  It's the effects of swallowing the Barium Sulfate that will cause a problem.  I suggest having a package of baby diaper wipes in your pocket.

Good Luck and let us know the results.

Donna

 

Jmat23's picture
Jmat23
Posts: 11
Joined: Mar 2014

Thanks for the words of encouragement Donna.

What an amazing survival story. Very inspiring and I'm sure that gives a lot of people, including myself, much hope. I was always under the impression that metatastic RCC was very deadly but realise now that there are some through drugs and resection can keep punching on. Amazing!!!

Bless ya,

John

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hi John..!  Since you are a reader.. you may wish to check out CD47.  One of several new types of treatments that are in the future.. we hope..!  

http://stemcell.stanford.edu/CD47/

There are a bunch of new treatments that have not yet started human clinical trials.. but soon will..!  Hopefully some of these head your direction as well.  When I do the research I do see other countries participating in many clinical trials.. so we never know, do we..?

Ron

Jmat23's picture
Jmat23
Posts: 11
Joined: Mar 2014

Thanks for sharing the link Ron, I had not heard of CD47 previously. It really does sound quite promising and in my own uneducated opinion, the fact that RCC is one of the relatively few cancers to have shown full or partial regression due to partial/full immune system response (albeit questionably) this may mean that treatments which allow the immune system and killer T cells to do their job may be extremely effective.

I will keep an eye on the trials with keen interest!

Jmat23's picture
Jmat23
Posts: 11
Joined: Mar 2014

Hi Donna,

Late reply but just thought I'd share that I had my follow up scans in May and they were all clear Laughing So at the 1.5 year mark signs were good. Next appointment is in December so fingers crossed the results are also good.

Managed to finally go on a Europe trip in June after all these years which was great. You have to make the most of life.

Take care,

John

Phredswife's picture
Phredswife
Posts: 99
Joined: Apr 2014

 Don't like those calculators much. Don't think I will be sharing this with hubby. Wishing u well!

jaay
Posts: 2
Joined: Jul 2014

congratulation  I am due for the 1 yr scans in 2 weeks hoping for the best.

 

regards Jaay

 

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