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WOW Did Not Expect This! :(

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Hi Everyone, 

I went back yesterday for my two week post-op check.  I have to say this round has been a little easier recovery as far as the incision is concerned.  

My gfr improved a tiny bit up from 39 to 43.  I was then told that the tumor was not able to be classified!  They are getting my slides from three years ago at Dartmouth-Hitchcock Medical Center and sending them along with the slides from this new tumor to Johns Hopkins Medical Center.  I was told that this is extremely rare.  Also, the tumor had invaded the perinephric fatty area as well as the lymphovascular space and graded as a T3a. 

This is very difficult trying to take all in going from three years ago being told only 5-10% chance of recurrence to oh now you have Stage III renal cancer and oh by the way we really can't tell what your tumor is. Makes me wonder if the entire kidney should have been removed three years ago.

 The course of action now will be every three months I will have a chest c-xray, blood work, and alternating CT Scan and MRI.  I know there are some of you here with way worse circumstances and I thank you for allowing me to have my little pity party before I pull up the boot straps and say to myself ok time to carry on!

~Bonnie

 

 

APny's picture
APny
Posts: 1966
Joined: Mar 2014

I am so sorry to hear that; must have been very hard to digest suddenly being told it's stage 3. I definitelly think you're entitled to a pity party. It sucks thinking that the original surgery was the end of it, only to have to face this 3 years later. Since this tumor is a different type than what you originally had ((I assume you had clear cell?) I'm not sure a complete nephrectomy would have done anything as it doesn't sound like a recurrance of the original cancer. I'm sure they'll sort it out and the one good thing is that they did remove it all and it's not gone anywhere outside of that area. So hopefully with careful and frequent monitoring this time it really will be the end of it. You're in my thoughts and prayers, Bonnie.

jason.2835
Posts: 337
Joined: Nov 2014

Bonnie,

That is pretty weird... hopefully the big guns at Johns Hopkins can classify it as something nonaggressive.  The more I hear from people that had partials, the more that I feel fortunate that they just clipped the whole thing out for me last year.  I'm really hoping that this comes back as something positive.  Like you said, it could be worse... Now that it is truly "all out," you can soon move on from it.

- Jay 

APny's picture
APny
Posts: 1966
Joined: Mar 2014

What scares me is how these follow up scans we get after surgery keep missing growths until they’re as big as a golf ball and invade neighboring tissues and glands. Why didn’t the routine CT scans pick it up when it was still very small and non-invasive? I’m starting to lose faith in the whole radiology profession L

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Agreed APny! It is concerning that even though I followed up with the "recommended" guidelines for CT scan every other year, it makes me wonder if the guidelines are wrong.  My last CT scan was in Feb 2013 and was perfectly clean.  They are so worried about too much radiation that they risk people's lives by stretching it out too much.  Now look, I have to have something done every three months which involves radiation!  I am sad to think this could have all been avoided.  I'm just praying that Johns Hopkins can identify this tumor so we know what we are dealing with.  Meanwhile, I am trying to do everything I can to keep myself strong and healthy.  Thank you for your support, I sure appreciate being able to talk to others who understand.

~Bonnie

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Thanks, Jay.  I totally agree in hoping that it is identified as non-aggresive and also that it was wise you had your entire kideny removed.  Best wishes to you.

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

I'm sorry for stage III news, it's not easy  to digest it! I 'm wondering how they have missed it in your last follow up scans! Was it too small? The good news is your recovery is fast, thanks God for this part. Hope they finally understand the type of it and definetly praying for nonaggressive type.

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

My last CT scan (on schedule) was perfectly clean.  I'm not sure if the every other year for CT scan guidelines are enough.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Bonnie, I am so sorry you are going through this. My husband is Stage 3, he had a Full Nephrectomy. After 18 months NED his ONCOLOGIST wanted to go to yearly scans. UHH, No way in hell.

 

I get their concern with radiation risk being balanced with recurrence risk for partials. The statistics support the plan for scan frequency with partials.  BUT I just don't know if  a "one size fits all" approach is beneficial for renal cancer since it is so unpredictable in nature. That's my problem with all of it. Statistics are just that. My husband was 0.2 cm away from a Stage 4 diagnosis of tumor invading beyond Gerota's Fascia. That's just too close for comfort in my opinion to not advocate for yearlly scans for at least 4 years. I'll pay for it myself if I have to

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Amen to that!

APny's picture
APny
Posts: 1966
Joined: Mar 2014

I agree. I don’t think every other year is good enough. I think if radiation is a concern with frequent CT scans then an US every six months should be minimum follow up care for even stage 1. My last US picked up a sub-centimeter cyst on my kidney which we’re now monitoring so it’s not like it’s insensitive to small growths.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I would like to know, specifically, what the risk of secondary cancers is as it correlates to # of CT scans. Maybe that would be a good way to make an objective, individualized decision on the matter rather than just hear "radiation is bad, don't get much". 

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

Oh Bonnie,, enuff!!

So sorry for all you are going through. I too, hope that John Hopkins can get to the bottom of this and give you the answers you need.

Sending you a hug filled with HOPE!

Warmly, Jan

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I think that people need to not worry about scan frequency. Bad effects take years to develope. Cancer is going to be much more harmful if it isn't properly identified and treated as soon as possible. Everyone prays for being NED and wants to be treated conservatively. Always more worried about radiation. I think it is a good idea to find mets before there are 20 of them. Treatment options are greater. If things get out of control, the risk of a shortened life is much more serious than the risk of bad teeth and hair loss in 20 years.

BTW, at this point I can only estimate. They say a CT scan is like having 400 chest x-rays. That is scarey. Since 2011, I have had around 40 Ct scans. And all with contrast. And 1 kidney. 40x400=16 thousand x-rays. When I die, it will be from the cancer. Not from diagnostic studies. I don't care if someone is stage 1. ALWAYS get thorough and frequent scans with contrast. Better safe than sorry.

But this is only my opinion.

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

Lasr year I let them do U/S instead of ct scan because that is all my urologist would do .  THis year my onc said she wanted ct scan and no U/S cause they are not a good test for kidney cancer.  She said if it does pick anything up its too far gone.  So I called my doc office and told them onc wanted ct scan instead of U/S this time and it was 2 weeks later that a resident called my back and said why are you insisting on ct scan?  you get so much radiation from scans.I told him what onc said and he said U/S was good, so I told him if they didnt want to do it that onc would.  So a week later i got my appointments in mail to have ct scan with contrast.  Was supposed to been last week but I got a blood clot in my groin area where hip surgery was done 2 months ago.  Now on all these blood thinners.  Been real down for over a week now. Seems like I fix one thing and 2 more come aboard LOL.   So CT is this thursday May 7th.  Appreciate your thoughts, and some good karma.

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

Aww Brea, I feel for you.

Glad you could advocate for yourself.

Remember, WE will walk along side you if you want...

Let us know how you are doing.

Sending you a hug filled with love, care and healing energy!!

Jan

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Hang on in there Brea and I hope your scans scan well with the right result. Oh and get a new urologist. Maybe your onc can recommend one?

Srashedb
Posts: 482
Joined: Dec 2013

my husband has had mega CTs and lots of cyber knife radiation. The risk of a secondary cancer is definitely high but it takes about 30 years to develop. 

Balance that with missing a metsstasis from kidney cancer is a no brainer.

Sarah

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

I will be praying for you that all turns out ok and is identified.  Wow , just cant imagine what you are going through waiting thru all this.  In my thoughts.

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

 

I absolutely agree with all you!  Thanks for your support.  I will let you know what the results are from the "weird" tumor when the results come back from Johns Hopkins.

<3

~Bonnie

 

JoanneNH
Posts: 115
Joined: Sep 2013

I had my surgery at Dartmouth-Hitchcock also.

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Wow Bonnie - what a kick in the pants. I often wondered whether partials are worth it as well. It seems a lot of people get recurrence. And good for you, for bouncing back from your surgery so quickly!

You have the exact staging as me - sinus invasion and lymphovascular invasion - stage 3a. I will be very curious to hear what they have to say about it all. (I don't want to sound like a broken record, but that lymphovascular invasion really worries me!) Keep the CT scans coming! I know Nano once reported that cancer from radiation from many CT scans can take decades to appear - so what is all the worry about??? Most of us are over 50 as it is!! (I will tell you my age, but don't ask me my weight!)

Brea - I am thinking of you and praying for you to be healthy and feeling good again!! You certainly have had more than your fair share!

Hugs

Jojo

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

Well, I received Johns Hopkins pathology results emailed today from my oncologist which are posted below.  Not sure if it really changes anything from the stage T3a diagnosis, but will see him again in July with my list of questions.  Saw the nephrologist last week and my gfr went up to 47 woo hoo!

I know a lot of you have been at this stage a lot longer than me, and I admire your strength and determination.  Thank you all for your support.  JoanneNH I sent you a private message. :) 

AP SUPPL REPORT

Patient's prior partial nephrectomy, performed at Dartmouth-Hitchcock
Medical Center in 1/2012, is reviewed. Our current tumor
is morphologically identical to the prior tumor, but lacks areas of renal
cell carcinoma, clear cell type, which are unequivocally present in the
prior tumor. The rest of the current tumor is submitted for microscopic
examination, and does not show a clear cell component. Based
on this review, as well as consultation with Dr. Pedram Argani of Johns
Hopkins, the diagnosis is amended to the following:

Right kidney, nephrectomy:
Renal cell carcinoma, unclassified, Fuhrman nuclear grade 3/4,
consistent with recurrence of patient's prior renal cell carcinoma.

paw1218
Posts: 4
Joined: May 2015

I was diagnosed with Stage 3 that extended into my vena cava in Septmber.  I had a full Nephrectomy and tumor removed from the vena cava this past September and have been having regular CT scans, one post-op, and then again at 1 month and 3 months.  At 6 months I had an MRI that shows there is still tumor in my vena cava and it appears it is tumor that was there the entire time.   The CT is not as good at looking at the surgical site, but for looking at things like the lungs.  My recommendation is to be monitored my MRI in addtion to CT.  I am now faced with having to have a second surgery almost 9 months later that I think would have been discovered immediately if an MRI was done right after operating.  

 

Bonngo's picture
Bonngo
Posts: 79
Joined: May 2012

I am sorry to hear that you may have to undergo a second surgery...I know how that feels. Hoping they can surgically remove any remaining tumor.   It's a fine line to know how often to have scans as I stated above, I feel that if they had checked me every year with a CT Scan instead of every other when I was Stage 1, I may have avoided all this. Now that I am at Stage 3, I will be having MRI/CT scans alternating every 3 months along with chest x-rays.  

APny's picture
APny
Posts: 1966
Joined: Mar 2014

 

Bonnie, I’m so sorry you’re facing another surgery but I'm confused about the report. If you had clear cell carcinoma before and this tumor lacks clear cells, (“does not show clear cell component” according to report) and is now called “unclassified” then how can it be a recurrence?

 

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