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Questions on complex cyst/surgery recovery/need for surgery

sue406
Posts: 12
Joined: Sep 2010

As happens with so many people, I discovered I had a small renal mass during an ultrasound being conducted for other reasons entirely. My local doctor advised me, after an additional CT scan and an MRI, that the chances of it being cancerous were 90% and it needed to be removed.

This was three years ago. The mass was 2.1 cm, had several internal septations, and very slight enhancement in one area. It was considered a complex cyst.

I went to Mayo for a second opinion. The doctor there would not even consider surgery at that point. He felt the MRI was too indefinite to make a decision and that waiting wouldn't hurt.

Well, three years and five more MRIs later, the only thing that has changed is the size. The cyst is now 2.7 cm. Enhancement is minimal to none, but the septations remain. Recent MRIs say the septations could also be "debris."

The doctor is now recommending surgery, if not immediately (in a couple of weeks!), then within six to nine months. He believes MRIs will not give a definitive answer, and surgery is the only way to determine whether this is cancerous. Given the growth in size, he's less content to continue monitoring via MRIs.

He would do a laparoscopic partial nephrectomy.

I'm wondering whether other people have been in this situation of not knowing exactly what the renal mass is and considering whether to have surgery, when it may be nothing at all, other than an incidentally found mass? Have you had surgery? Are you glad that you did? How was the recovery? And were there unexpected complications?

Thanks for any insights anyone is willing to share!

icemantoo's picture
icemantoo
Posts: 1481
Joined: Jan 2010

My tumor was 2.7 cm and the Doctor said 90% chance of being cancer. I had a left laproscopic nepherectomy on 8.1.02. The pathology confirmed that it was Cancer. With what I have read about cysts the larger they are the more likelihood that it is Cancer or will become Cancer. As they grow larger they tend to metasisize. If there is a reasonable degree that it is or is likely to be Cancer get the Surgery behind you. Surgery cures Kidney Cancer if it is done before the Cancer spreads. No radiation, no chemotherapy, just annual C_T scans the doctors use to cover themselves. There is no way to sugar coat the sugery. It is not fun and games, but it is better than the alternative. For our family reunion on my 60th birthday, 11 months after surgery I went watersking (no falls, 15 minute run).Since then I have considered myself cured even though I still get to drink those spcial flavored drinks for each C_T scan. Block a couple weeks off after surgery to do nothing except maybe watching football, hockey or basketball on TV.

sue406
Posts: 12
Joined: Sep 2010

Thanks. I appreciate the perspective of someone who's been through it. I just feel like I'm in a very hard place, making a decision about whether to have major surgery when the doctors can't be certain that it will be malignant. My doctor is giving it a 50-60% chance. The alternative is continued monitoring, which also seems questionable at this point, given that the only definitive thing it's shown in three years is slow growth....

VeryAnxious
Posts: 67
Joined: Sep 2010

If you are unusre, always get a seond opinion. This can be helpful. I also was told I could wait, but I did not want to.

sue406
Posts: 12
Joined: Sep 2010

Thanks for the recommendation. This is the second opinion. My local doctor said three years ago that there was a 90% chance it was cancer and needed to come out. The Mayo doctor wouldn't consider surgery at that point. The slow growth and continued lack of a definitive answer via MRI has made him say now that surgery is probably the only way to tell. However, he said I could wait another six months and do another MRI. I'm starting to wonder at what point the MRI monitoring is just useless.

Further conversations with someone in his office tonight were similarly indefinite. They thought I could wait, but also said that the mass is lateral and coming close to the urine collection system. It's my understanding that that makes the surgery more difficult, so I'm wondering if it's just time to deal with it....

VeryAnxious
Posts: 67
Joined: Sep 2010

Mine is right new to the renal pelvis and artery. I am going in on Friday. I decided I did not want to wait any longer for it to get any bigger. It has to come out eventually. good luck. It is not an easy decision, as I very well know. I kept asking quesions, but at some point we make ourselves more and more stressed. Do you feel a third opinion would help? So did you travel out of area for the Mayo Clinic. Again good luck

blackbelt's picture
blackbelt
Posts: 32
Joined: Apr 2006

If your cyst has grown what are you waiting for? Yes I understand your scared, believe me there is something there, I will give you the advice my Veterans Administration oncology doctor told me on my choice of surgery, he recommended the open partial nephrectomy, yes you will have a big scar, yes it will take a lttle longer to heal, he said having the laparoscopic partial nephrectomy there may be a risk they could not remove all of your cyst, he would rather be able to feel the cyst rather than just looking through a scope.
Be very careful if your doctor will not offer a open partial nephrectomy because he maybe trying to save money for your healthcare insurance company, I was really blessed to have the best oncology doctor through the The VA.

I had a open partial nephrectomy on 5/17/2006 at the age of 51, renal cell carcinoma, clear cell type, Fuhrman grade 2, stage I, 1.2 cm right renal mass, with complications, doctors nicked right lung and nicked lower abdominal peritoneum area, this kind of surgery was high risk high return because of location of kidney tumor!
My personal advice is get the surgery done, quit worrying, go on living a long life, any questions please contact me.
GOD BLESS

sue406
Posts: 12
Joined: Sep 2010

Just to follow up with the results of my surgery, I ended up very luckily having what is known as a "cystic nephroma," which can initially look cancerous but is not. In fact, my doctor told me after surgery that the mass he took out looked like a typical RCC and that's what he was expecting the pathology report to show. So we were surprised to hear the results a few days later.

Part of me still questions the need for the surgery at all, but having read through many posts here, I know how fortunate I am that things turned out the way they did. And even had it been RCC, the size and location would have favored good long-term results, anyway. Reading everyone's posts on their own personal journeys and struggles convinced me that it was better to deal with the mass while it was still small than to ignore it and hope for the best. Thanks to everyone who has shared their stories and their support.

ray1990
Posts: 1
Joined: Oct 2013

hi my name raymond jackson i had 3 paranormal cyst removeal at the same time about 2 to 3 years ago on my lower spin, i did what the doctor said but it still not healed is there anything i can do at home to help it heal ? 

my email is scoutinsnow@hotmail.com

icemantoo's picture
icemantoo
Posts: 1481
Joined: Jan 2010

Ray,

Unless someome on this board has other suggestions I am going to suggest you take this up with your doctor as those of us on this board have for the most part only had kidney cancer.  May you find the answers you are looking for.

 

Icemantoo

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