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Scheduled at Cleveland Clinic for second opinion

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

Received a call from my PCP today that I am scheduled for a second opinion with a new Urologist with the Cleveland Clinic!  Original Urologist (stand alone practice) recommended active Surveillance without a biopsy. Didn’t sit right with me And talked to my PCP about it. He agreed and set Me up with a new doc. 

I looked him him up and he specializes in Robotic surgery as well. Will be interesting to see what he reccomends. 

icemantoo's picture
icemantoo
Posts: 3195
Joined: Jan 2010

---offer a second opimion, but the guy from CC can probably do it better.

 

 

 

icemantoo

a_oaklee
Posts: 421
Joined: Nov 2013

Second opinions are always good.  Most, almost all, RCC patients do not have a needle biopsy, and if I were you I would not be pushing to have that done.  Generally, a scan can give enough information to a urological surgeon of whether or not the tumor needs to be removed or watched.   Your spot is very small and that gives you time to get your second opinion.  I know you really don't feel very lucky or blessed right now, but you are in a really good place with it found early, and you are going to have a very good prognosis.  Best wishes to you.  

Bay Area Guy's picture
Bay Area Guy
Posts: 377
Joined: Jun 2016

I agree.  When I was diagnosed, I asked my sister (a nurse practitioner and, in my opinion, one of the smartest people on the planet) about a biopsy.  She said it wasn’t recommended since all those blood vessels are in the area.  A biopsy risks nicking one or, in some cases, allowing malignant cells to escape and float anywhere they please.

jroco's picture
jroco
Posts: 16
Joined: Mar 2019

After 8 months of active surveillance on my 1.5 cm and even though it only grew 2mm, i want this thing out of me. My anxiety is going to kill me before anything else.  I'm kinda surprised at just under 3cm he is recommending active surveillance. They must have a lot of confidence these small tumors won't cause problems. I guess it's not a bad thing to be stuck with this decision dilemma  compared to alternative. Good luck with your new appointment.

a_oaklee
Posts: 421
Joined: Nov 2013

My husbands urological surgeon recommended surveillance for a few months.  i asked why, and he said my schedule is booked for the next few months, and it's okay for you to wait.  We were new to this and took him at his word.  With everything I know now, I wouldn't wait more than two to three  months with a 4 cm or larger tumor.  Smaller tumors are less likely to metastasize.  It's very very rare with the size being described on this post.  I have read online in my research that most RCC tumors grow at a rate of half a cm a year.   Of course this is an average and with all statistics as individuals we don't know where we fit into the stats.

The good thing about this wait is that it has given you the opportunity to learn more and get a second opinion from a medical center that sees more kidney tumors.  While you are waiting try to lead your best life with good nutrition, some exercise/activity, quitting smoking if applicable, get some tasks done that you have been putting off.  Focus your attention, to the best of your ability, on something else, and the days will fly by.  There's also nothing wrong for your PCP to give you something for anxiety.  

jroco's picture
jroco
Posts: 16
Joined: Mar 2019

Here is a copy and paste reply from my doctor when i was bugging the crap out of him after i got cancelled and re scheduled for a month and a half later. I was pissed. This was not the doctors fault.  I left out some of the conversatoin but basically i asking for a referell for other places. I chose to stick with him in the end.

(Copy and paste)

Rich, 
The tumor you have is 1.5 cm in size, which is quite small as far as kidney tumors go. It typically isn't until kidney tumors get to be 4 cm or bigger before they has an increased chance of spreading to other organs. And they grow on an average rate of 0.25-0.5 cm per year. Therefore, there is absolutely no rush to get this done. And based on this data, it would be years until it grows big enough to cause you a problem. Having said that, you certainly don't want to wait until it gets that big. In addition, you want to have this done with the robot by a person who has done the "retroperitoneal" approach. 

MizzouFan
Posts: 10
Joined: Nov 2015

Jroco, the growth rate of a your probable RCC tumor does not have a average growth rate, it has the growth rate of your genetic and metabolic make up, which is unique to you. Another very important point is that the size of the tumor when goes Metastatic is unique to you a well. Get it tested and if cancer get it out of your body ASAP. Cleveland Clinic is as good as it gets for RCC patients. A final point is that how would your Urologist know the average growth rate of RCC tumors, 99.9% of RCC Tumors are monitored for their growth rate until after they are metastatic. I had a 16 cm RCC tumor go metastatic for the first time 6 months after it was removed. I have been at this disease for six years, I have seen people go metastatic at all different sized tumors. The only average numbers you should be concerned with is 0 and 100%, because those are your averageS. Best Regards Mizzou Fan.

Manufred's picture
Manufred
Posts: 225
Joined: May 2017

MizzouFan, really I appreciate your comments.  No one know if or when a tumour goes or has gone meta, and everything has a risk probablity greater than 0.  

[Content removed by CSN Support Team]

And hope that a definitive blood test is developed soon to take over from CT scans as the only way to know if you have (and possibly have had for some time) cancer.

Best regards,

ManuFred 

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

Thank you for the responses everyone. 

I do understand the fact that my tumor is actually pretty small. It’s also luckily in a spot that will make a Partial more feasible. I am just happier to be able to see someone with more experience in the field. I think thebUrologist I saw first focuses more on other areas. 

Although im familiar with the 4 cm stats, I have also been told that I am pretty young (42) to see this kind of tumor and that it may come with an increased chance of more rare forms of cancer other than RCC.  If that were to be the case and it were to be aggressive, we would have no historical baseline growth data to go from since all of this is from an incidental scan.

The other thing my PCP and I discussed are the symptoms. No blood in urine yet but fatigue was present before my appendectomy. I have also experienced random bi-lateral flank pains. This is the most concerning part is that the scan only shows 1 tumor on 1 kidney (1 side but the pains are randomly on both and not always together). The pains are coming from both the kidney region and the abdominal region.  Since it is random and can’t be repeated, we’re stumpped. Importantly though, they were happening a few months before they found the growth. With my work schedule and fear of what they might find if I ever did go in, I wrote all of it off as getting old, running my Body into the ground and overworking.

The other thing we are watching closely is my blood sugar.  I am technically not diabetic but live in a higher than normal range.  If I were to become diabetic, it could lead to surgery complications and close off potential options for me.  

 

I want to rule out other things along the way.  I also want to insure that if it is just anxiety, that’s all it is. I’m ok with that, but I do not want to get bad results from something else down the road later because “we should have probably looked at that” And didn’t. 

 

In in the meantime I am focusing on what I can do today.  More water intake, more exercise (which I’m balancing with the appendectomy recovery) and slightly better eating.  I need to work harder at changing my diet but I will get there.  

 

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

My mass was 2.5 cm in my left kidney.  Radical neph 3 months later-never a talk of surveillance- I couldn't wait to get it out and was happy it was a radical procedure-good luck with your second opinion and stay off the internet-June

jroby55
Posts: 36
Joined: Feb 2019

I had mine done at Cleveland Clinic and have nothing but great things to say about them. They were awesome from start to finish. If you don't mind me asking, who is your doctor?

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

Dr. Isac. 

jroby55
Posts: 36
Joined: Feb 2019

Good luck man! I'm sure you're in good hands at CC!

trp61's picture
trp61
Posts: 3
Joined: Mar 2019

Hi all!  I just had a nuclear renal scan to see if the 3.2cm matter in my right kidney was a column of Bertin, and unfortunately it was not Bertin. Therefore, I'm scheduled for a partial on April 1st (not fooling!).

My urologist is the best in my area and I trust him very much. He's planning to perform the surgery with an open incision. I have no time to seek someone willing to use a minimally invasive techique to ease recovery...and I'm nervous because I'm 280 pounds with considerable belly fat. I certainly don't have time to lose weight prior to the surgery. Or do I?

  1. Obviously, I don't want it to metastisize. But, since it's relatively small, do the risks associated with my weight make delaying a couple of months until I can lose 20 pounds a sensible risk?
  2. Also, does belly fat complicate open surgery enough to make laparoscopy a priority?
Thank you all!
eug91's picture
eug91
Posts: 120
Joined: Jan 2019

Sorry you had to join us, but this is a great forum full of great people. It was a life-saver for me, supporting me when I was first diagnosed. We've all been where you are now, so feel free to ask us questions. 

As for your questions, I don't know specific answers about weight vs open/laparoscopic. Better to ask your doctor. What I've read is that the tumor won't metastisize until it's bigger 3-4cm, which would make me nervous about you waiting too long to get it out. But again, you should discuss your concerns with your doctor and, if necessary, consider getting a second opinion. 

Also - one tip - more people will see your post if you start a new thread in the Kidney Cancer forum instead of embedding your post here under this thread. 

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

So sorry you have to join us. I unfortunately do not have the answers for you. I can say that you should certainly ask your doc about why he/she chose an open procedure. Weight may be one thing but there could also be other reasons. It may be cause of the location of the tumor making it a more complex of a surgery. It may be what the surgeon is comfortable with, it may be because of specific physiology. There could be a lot of different reasons. The point is don’t be afraid to ask your doctor why. It’s your right to know And I’m sure the doc would be happy to answer. 

 

As as far as the timing, I agree that it May be time.  From what I understand, your tumor is getting to a size where it’s safer to get the surgery over with than to wait it out. 

 

That said im also new here and have found that there are people much more knowledgeable than me. You’re in the right place. 

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