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Tumor and complex cyst benign

cindiboy's picture
cindiboy
Posts: 5
Joined: Jun 2011

I am 6 months post surgery from my second surgery. I was told after my first open partial nephrectomy that the complex cyst was benign. I recovered for 8 weeks then had laproscopic partial nephrectomy on my left kidney to remove a tumor. It came back benign also. I was told before both surgeries that I had a 98% chance of cancer. While I am very happy and blessed to have that outcome I wonder why I wasn't given better odds. I had no hope for about 4 months. This changed so much in my life and in my family's life.
Over the past few weeks I have had 4 instances of pains in my right flank that really feel like a kidney stone. The pain is dull and radiates and only lasts for a minute. I go for my 6 month followup ct scan in 9 days. Has anyone had experience ith this? Even though I am cancer free I worry they missed something since they seemed to be so sure I had cancer.

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

Cindiboy,

As I understand it you had a tumor on one Kidney and a complex cyst on the other and both turned out to be benign and you had 2 partial nepherectomies. As far as the complex cyst the perrcentage that turn out to be cancer increases with its size. The same with the tumor. Your doctors were apparently faced with a very difficult diagnosis of possible bilateral kidney Cancer. Consider yourself very lucky that they were able to get both out before one or both became cancer. Your odds of living a long life if they both became cancerous and spread decrease rapidly as the tumors get bigger. It sounds like they did the right thing for you.

Most of us on this board including myself were given odds over 90% that it was Cancer and like myself most of our tumors were in fact Cancer. That was alost 10 years ago for me and I can say I had Cancer and you can say I almost had Cancer, but they got it out first.

Best wishes,

Icemantoo

One Lucky Girl's picture
One Lucky Girl
Posts: 68
Joined: Feb 2012

Hi Cindiboy,

As Iceman so eloquently put it, the doctors couldn't have been sure that your cysts were not cancer and their actions ensured they couldn't become cancer. You have indeed been through major trauma and it will take some time to heal emotionally as well as physically. It is really wonderful though, that the cysts turned out to be benign. In my case, my (guarded) differential diagnosis going into surgery was benign oncocytoma based on a CT scan, MRI & ultrasound. The day after my surgery, the urologist told me that my "cyst" was in fact malignant (papillary RCC Stage 1 Grade 2). Those 90%+ odds are correct. I'm also very glad I decided to go for the surgery, instead of "watching and waiting".

I am 4 weeks post-op, and am occasionally experiencing transient dull pain in my kidney. I don't know how long it will last, but I believe it is simply part of the healing process. I hope your follow-up scan goes really well and wish you all the best.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It seems the ugly old men here [I refer only to myself of course :) - the others know who they are] are getting crowded out by the arrival of more and more young ladies with film star looks.

At first sight this seems very regrettable but it's actually easy to be philosophical about it. There's a steady trend towards more cancer, in affluent 'developed' societies in particular, which is not entirely ascribable to better detection. It's due to, inter alia, environmental factors (such as toxins from industry and agriculture, junk food and, most of all, declining levels of physical activity).

However, the swelling of the numbers here is probably due rather more to better, and hence earlier, detection. So, rather than sorrowing over the number of younger sufferers here we should probably rejoice in the number of younger people whose lives will be saved by ridding their bodies of this disease and returning to them all the years they might otherwise have lost, as well as sparing the grief of their loved ones. As Dog Rescuer speculated, there must be many folks blissfully unaware that they are not as well as they suppose and the more of them we can detect the better.

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

Hey...I resemble that remark...and while it is nice to be surrounded by a bevy of "young ladies with film star looks" I sure wish it was for different reasons. This disease is supposed to be more prevalent in men, you sure wouldn't guess that here.

Just call me geezer,

Gary

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Certainly, old chap, a bloke like you's a diamond geezer.

cindiboy's picture
cindiboy
Posts: 5
Joined: Jun 2011

Thanks for being so understanding and not beating me up because I don't have cancer but complaining.
Wonder what my chances are of having more tumors grow? I cant help but think that this isnt over. I am not back to normal so i feel like something is still wrong. I itch all the time on both hips, my urine low is a lot slower, i wake up 3 to 4 times a night, i am always thirsty, i am always hungry, i have put on 20 lbs and I can't get it off and I am exercising 30 min 5 times a week., I am exhausted all the time, I nap daily, and it goes on. I just wonder if this is normal. Am I being paranoid?
Do you all follow vegetarian or special diets? My doctor doesn't seem to think a special diet is necessary but I have read a lot about organic and vegetarian diets really helping to keep your kidneys clear. I know it is recommended that you don't consume alcohol but I don't think I can give that up. I did for about 8 months but now t is my guilty pleasure.

Thanks for your responses and I am sorry that you all had to go through and are going through all of this. I know it consumes my thoughts and I can't imagine how you all deal with it.

rae_rae's picture
rae_rae
Posts: 277
Joined: Oct 2010

Recovery is different for everyone. It's still a hard blow on your body regardless of whether your tumors were benign or malignant. Have you been checked for anemia or let your doctor know how you are feeling? I would try to find out if there is an underlying reason that could be resolved.

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