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Could we discuss recurrence's and the particular's surrounding them?

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Hi Everyone,

In June of this year, I was diagnosed with RCC. I had a partial left nephrectomy on July 22nd. My pathology diagnosis was:

RCC
Clear Cell Type
Fuhrman Grade 1
Greatest Dimension was 2.2 CM.
Negative for Extrarenal Extension
Negative for Angiolymphatic Invasion
Parenchymal Margin Negative, 0.1 CM AWAY.

I was told my chance of recurrence was 5% or less, but after reading posts here, I fear it returning. Those of you with recurrence's, what were your particular's? Did any of you with small tumor's like mine have recurrence's? Thank you.

Blessings,
Lisa

icemantoo's picture
icemantoo
Posts: 1528
Joined: Jan 2010

Dear Lisa,

Sounds like from your information that you have two (2) chances for recurrance. Slim and none. The 5% chance of slim is probably highly exadurated. Those posts that you have read with recurrance undoudtably started with a lot more baggage going in.

Best wishes,

Icemantoo

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Thanks Icemantoo. That made me smile. I hope you're right. I feel like I'm looking over my shoulder all the time now waiting to have a recurrence. I'll try and put it out of my head. Thanks again.

Blessings,
Lisa

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

Lisa -

Thanks for starting the conversation. These very same questions have been weighing on my mind, too. I am 43 and had a lap radical nephrectomy and andrenal removal on July 6. Our stories are pretty similar. My pathology was:

Clear cell renal carcinoma
Stage pT1a, PN0, pM0
Fuhrman grade 3
greatest dimension 2.5 CM
limited to the kidney with no extension into the sinus or perirenal fat or adrenal gland
all margins free of carcinoma

All told, these are all good news. We have consulted with a renal cell oncologist and have learned the Furhman grade 3 gives me a higher possibility of recurrence than you might have. Current course of action is blood work and CT with contrast every three months.

I would be curious to know of others on the board with a profile like mine.

Amy

BG
Posts: 85
Joined: Jun 2011

Hi Lisa,

I feel similar to you.

I am 48 and had a lap partial nephrectomy via davinci robot on July 28th. My pathology was:

Chromophobe renal carcinoma
Stage pT1a, PN0, pM0
Fuhrman grade 2
greatest dimension 3.9 CM
limited to the kidney with no extension into the sinus or perirenal fat or adrenal gland
all margins free of carcinoma

Even though they said we got it all, I worry. I have an oncologist appointment the 29th of August, and hope for reassurance. However, I am a planner, and also scheduled the appointment just in case (at least I would already have an oncologist following my case).

I wish you and Amy the very best.

Brent

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Renal Cell Carcinoma
Clear cell
stage 1-2
size 2cm
no extensions

I, too, was told recurrence chances were about 5%. Tumors don't start to spread until they are much larger -- ah, the importance of early detection! Kidney tumors are also very slow growing. If we keep our follow up ct scans over the next few years, you and I should both be fine.

RobFrom1956
Posts: 13
Joined: Aug 2011

Wow, I didn't know about these "stats" on tumors. Did your doctor tell you this information..(the stage, size, scale, etc)?

BG
Posts: 85
Joined: Jun 2011

Hi Rob, the pathology report will give these details, which should be discussed with the urological surgeon. I am currently scheduled to also see a RCC oncologist for a second opinion on the pathology slides and subtype to ensure they are correct.

There were some details that were not on the pathology report that my urologist provided.

Brent

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

Yes that is plural. But I'm a survivor.
Short Version-late June 2006
Clear Cell RCC
Stage IV (we knew going into surgery, as there was already a mass in the liver)
T2, M2, N1
R. Kidney removed with 12.5x 8.5x 4 cm tumor (a medium baking potato)
L. lobe of liver removed with 3x4 cm tumor
Several wedges removed from R. lobe of liver, but frozen slides were benign
Gall bladder removed-congenital defect and wasn't draining properly
Set of nodes removed with 2 of 11 positive
Fuhrman upgraded from II-III to a III-IV after finals on exams
Surgeons felt they had removed all active sites
No follow up drugs as the Oncologist at the teaching hospital said I didn't fit any paramaters for drug trials, and with no active sites to track, I would be subjecting myself to possibly unnecessary side effets in a shotgun approach.
Three CT's later and oops, a node is enlarging
Needle biopsy confirmation and surgery on July 3, 2007
More Ct's, oops another node is enlarging
PET scan as it couldn't be reached to biopsy, more surgery on June 26, 2008
Thus far, a couple of close together re-checks, lots of scans, blood work, etc., and I'm still here to talk about it.
The odds I was given on May 10, 2006 was survival for 5-7 months. I was not ready to say my farewells by Christmas that year, so I leapt at the chance for surgery then, and each time afterward.
Statistics are meant to be broken, and I plan to outlive any of the data doctors have been tracking.
It's weird to know we are all bits and pieces of data, our old cells have been frozen for research, our DNA will be examined.
Lets help those docs be able to give better prognosis advice to future patients. Be a survivor.
Donna

RobFrom1956
Posts: 13
Joined: Aug 2011

I will have to check with my brother to see if he has these numbers...

Also, he went to see one of his specialists last Friday and was severely "bummed-out"...they are putting his chance of recurrence at around 40%...anyone else in the same boat?

Prayers and Best Wishes to ALL.

skipnonu's picture
skipnonu
Posts: 2
Joined: Sep 2011

I am also worried about recurrence, This is my first post. I am sooo happy I found you all here, it really makes me emotional. It is nice to not feel so alone in this. Quickie about me Stage 1 Ta or Tb I forget which, No Mo, 4.2 CM Left Kidney upon first surgery, Radical Partial Nephrectomy. Feb 2008. 2nd surgery, Adrenalectomy left side, May 2010 (I think it may have been something missed or to small to see after first surgery)Adrenalectomy went poorly was in the hospital all summer off and on bad infection sepsis ect, I really think I had a bad reaction to the anesthesia. I didn't heal until Nov 2011, Major hernia appears Mid Oct 2010, Jan 2011 hernia surgery. CAT scans all clear through Sept 2011, But here is my concern. I have high Hematocrit, RBC, and Hemoglobin, on my blood test. My Oncologist is going to run a battery of test for things like COPD, Polycythemia, ect, but I had a CAT scan about 1-2 weeks ago with the blood test, CT was clear, Blood test not clear. So the Oncologist believes this is going to become a recurrence, any thoughts on this? It has my fiance and me extremely worried. I always try to keep positive but as you all know when something is wrong man it sure shakes a person up. I will post more in the future. And Once again I sure am glad I found you folks here, it has brought me so much comfort in the 3 days I have been a member. Take care of yourselfs.

reichstall
Posts: 2
Joined: Sep 2011

I know this is bad i had surgey in aug 11 real bad time did not care what they called it how big it was or anything like that just that he said he got it all.Now with out looking i have no idea when my follow up is.I refuse to let this run my life.It is going to be what it is worry for 3 months will not change it.If there is any way you can just put it in the back of your mind i would try to do that.

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

May 2008
Stage IV RCC
Clear Cell Type
T2 N0 M1 (one nodule met to left lung)
Radical left kidney nephrectomy

June 2008
Surgical Removed the left lung nodule

July 2009 (recurrence)
CT found a 0.9cm nodule in right lung
Considered taking target therapy
End up do noting, just put on watch

June 2010
The nodule got bigger (1.1cm), still the only one
Got it surgical removed

September 2011
NED
Still alive and kicking

Jon

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

2001 - Clear Cell RCC - Open Radical Nephrectomy (with adrenal gland)
Grade 2 - T1 - N0 - M0 (tumor was 6.5 cm)

2005 - An early breast cancer

2006 - RCC recurrence - metastasized to right lung - right lower lobectomy

2011 - RCC recurrence - metastasized to pancreas - two tumors 4 cm and 6 cm.

With RCC there seems to be no absolutes. All any of us can do is be vigilant - have regular (thorough) followup - and if you aren't, INSIST on it. Mine seems to be on a 5 year clock and in between - I just keep on living!

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

Nobody really wants to talk about them. This subject pops up every once in a while but as soon as people actually SAY they've had recurrances,the thread dries up like Death Valley (pun intended). Just sayin' ........................................................

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

I think most survivors put their defense line right on the recurrence itself, mentally and physically. People are so scare of recurrence as to pretending it will NEVER happen. And when it really hits, just collapse like a landslide.

If we shift the line onward to the point expecting recurrence and prepare for it then it will not be a taboo for us to talk about it any more. By bringing recurrence out from the dark, we actually are taking offence position to deal with recurrences.

My priority to deal with recurrence is to prepare for the worst and then hope for the best.

Jon

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

To the fighters I admire most,

It was two years ago today that I was diagnosed with RCC and as I reflect on the events that have transpired since I realize that it is the stories of those of you that repeatedly have battled this disease that I am most grateful for. The courage and attitude you share has helped me, and I'm sure many others, fight not just the fear of recurrence but the fear of cancer as a whole. Should the day come when I am told that "its back" I hope that I am strong enough to follow your examples. I thank you all from the bottom of my heart, and my remaining kidney, you are heroes in my book. Lets keep this thread alive.

Sincerely,

Gary

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

but I don't feel like a wooohooo survivor or anything else. None of my doctors expected a recurrance based on the intial path report but with the first one I was surprisingly OK. I knew it was small(three very small tumors in the lower lung) and I knew they could surgically resect it. Recovery from that was a cake-walk compared to the open radical. This last one didn't really surprise me either. I'd been feeling crappy (extreme fatigue - upper abdominal pain) - but didn't have a clue that it could have gone to the pancreas. Apparently this is extremely rare (OH JOY).

After having my scans/biopsy slides sent to a couple of other places, it's been determined that it's inoperable. So - next we look at what else might work. Through it all I'm fine. I know for sure that this battle is God's and I'm just along for the ride.

I hope that anyone who reads this will take a couple of things away - first, really try to live life in the 'what is'. You may never have a recurrance (I pray for each of you)and to spend your precious life fretting about what might be is such a waste of time. Having said that, listen to your body! If something is going on that is not normal for you - or if you have some odd intermittent pain - get checked out! If you're not being followed closely (and I'm talking every six months) for the first 3 years minimum (preferably 5 years), insist on it! Had I not been followed this closely, the lung recurrance could have been missed and not found until I was serious trouble.

I also want people to know that a recurrance isn't the end! I'm now 10+ years out from the original diagnosis and, regardless of this latest speed-bump, I still feel mostly fine, am still making plans for my life and my future! As I've told my friends, none of us knows what tomorrow will bring. Car accidents, muggings, skiing accidents - whatever! Just because we have cancer (or have had cancer) doesn't mean anything. Those are just words - scary words for sure - but I have never seen a 'you will die on this date' sign on anybody.

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

I can't really speak to recurrences - at four months out from surgery, I hardy feel qualified as a survivor! But, I do want to thank all of you for sharing your perspective. No one us wants it, but the reality is recurrences DO happen.

I'll have my first scan next month and my husband and I are in the same mindset - we want it to be clear, and have no reason to expect it won't be. BUT - we are prepared for it to be something more. I think it's an emotional protective stance. I've wonder if the worry lessens after a few clean scans, but I kind of feel I will always be glancing over my shoulder.

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

This article is talking about cancer recurrence in general not RCC in particular.

Here's the link:

http://www.cancer.org/Treatment/SurvivorshipDuringandAfterTreatment/UnderstandingRecurrence/LivingWithUncertainty/living-with-uncertainty-toc

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

I have not had a recurrence but I went through about a month being told and believing a recurrence had occurred. I must admit from the time of my surgery until that diagnosis, albeit misdiagnosed, I was sitting around, depressed, waiting for it to happen.

Sure I tried to tell everyone, including myself, that life was great and I wasn't wasting energy thinking about cancer. But it was a dark cloud hanging over me for nine months. I was afraid to get my hopes up and "live".

The day I got my diagnosis, I walked out of the doctors office and broke down like I never had in my life. But that was what "jumpstarted" me back to living life again. I had been so void of emotions for so long. I believe I was releasing a year's worth of emotions that day. While I am grateful that it wasn't cancer, I am glad I went through the experience. I learned a lot, was able to find new docs thanks to so much support here and know I will be able to handle it if it does occur. Trust me, we do read everything here. Every single experience someone goes through has significance to someone somewhere, someday. We fear the unknown. Knowledge conquers many fears. Keep posting. I want to know how people are doing. What's working. What's not. I have learned so much from others going through this- much more than the doctors could ever dream of telling.
Rae

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

I can certainly understand your depression and fear over a recurrance. And I am sooo happy for you that it was NOT a recurrance. I think it's really important just to live your life for today. The 'what might happen' stuff is, to me, such a waste of energy! The only time I'd start to fret was just before my checkup. Then I'd spin-out and forget to live for a few days - get through it - and then pick up my life and keep on going.

I pray for everyone on this site - who has not had a recurrance - that they never do! And for those who have - I say God bless - and keep on living! That's one thing all of us can do for ourselves.

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

Surgical removal is the only way I consider to be able to effectively get rid of detectable RCC tumors as of today. It is really nasty to have to deal with it inside your pancreas, that is the least place for me to think RCC will go. Are you taking any target therapy now?

I learned from my recurrence that my RCC is a slow grower, 0.2Cm a year. I watched it very closely for a year before got it cut off from my right lung. I tried to feel it during but did not feel a thing. I think our immune system does play a key role in suppressing RCC from getting haywire. And that is what I have been working on since.

I am a long distance runner. Each time when I hit walls during a marathon run, it is so easy to stop and walk it or just call it off, I choose otherwise. At the end I pat myself on the back and smile “A good run and good job done, Jon”. A recurrence is just... another wall.

LB, I like Your picture, such a happy dog. Can I borrow it?

Jon

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

you can borrow the dog! Looking at him always makes me smile! If you can't copy from here, send me your email and I'll send him on to you! I change 'dogs' periodically - I think their faces are far more interesting than mine.

I agree with you - surgical removal is currently the 'most definitive' way of 'curing' RCC. I am also with you on the role of your immune system. My urologist (waaay back in 2001) told me that the one thing any of us with RCC can do to help is to keep a health immune system. That includes getting enough rest, drinking enough water, try to decrease stress in our lives, and eating healthy (I made all but the last - oh well). So, bottom line is, we can each do our best, keep on keeping on, KEEP THOSE FOLLOWUP APPOINTMENTS, and just LIVE!

As for the pancreatic metastasis - all my doctors are scratching their heads (as are all the places who my info has been sent to). This is apparently one of the most rare places for a recurrance (I always wanted to be special - but REALLY!). Bottom line, it is what it is. I may have the biggest case of denial - or I'm really doing OK with all of this. I'm amazingly peaceful.

As for treatment. I'm in the process of moving back home (I'd moved out East for an 'adventure' but now decided I need friends and family closer). While I'm frittering with moving, my docs are all researching clinical trials, treatments, etc. so as soon as I'm moved, I'll be having a lovely 'family (aka - medical) reunion' with all my docs.

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

Let God worries about death. Let your docs worry about the operation. You just do your job of living.

Keep stress level in balance, exercise as much as I can, eat healthy and live a good life style. I weight these 4 items equally for my immune system.

Got the dog. Thanks.

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