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Waiting for diagnose and panicking

pat1965
Posts: 6
Joined: Jun 2017

Hi all,

I am new to (probable) kidney cancer, but have had Thyroid, Breast and Endometrium primary cancers previously, all successfully treated. For that reason, I keep a close watch on what's going on with my voluble body. My control abdomen CT scan last week showed: 

"A low-density lesion in the left interpolar region measuring 1.2 x 0.9 cm measures slightly larger previously 1.0 x 0.7 cm. Other low-density lesions in the right kidney are unchanged and too small to characterize."

The doc ordered a more accurate CTscan of the kidney, which I had on Friday but he is out of the office and I will only be able to talk to him tomorrow. In the meantime, of course, I am wreck! Cant do anything else. I am on the verge of a panic attack. 

What can you guys say, considering my medical history? How's surgery? Recovery?

Thank you!

icemantoo's picture
icemantoo
Posts: 3273
Joined: Jan 2010

We   were all scared in the begining. The good news is that if it is of concern the lesions are as small as they get and usually close to 100% curable from surgery. Because there is a possability of a concern in both kidneys they may lookat the possability of different procedures   such as cyro and/or abalation. And still because it/they are so small they may want to watch and wait. Whatever the uktimate course of action we will help you thru this. We have all been there and done that.

 

Icemantoo

pat1965
Posts: 6
Joined: Jun 2017

Thank you Ice. I really don't like the idea of watching and waiting when I know I have cancer. I want to take it all out. I became quite phobic with my medical history. My worry is - will the medical insurance pay for intervention if it the lesions are small?

Tucdon
Posts: 19
Joined: Jun 2017

  Hi Pat,

 I had a right kidney removed on 5/9/2017 and am doing pretty good trying to get ack to work soon. It is not as bad as I thought so far,just a little disconforting and slowed me down quite  bit.I  was real tired mentally and physically for a couple of weeks bu

t it  seems to be geting beter. Hope all goes well.

pat1965
Posts: 6
Joined: Jun 2017

Thanks guys, really appreciate your feedback. ;)

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Hi, I'm also waiting for a diagnosis, but they haven't said "probable" cancer, so I feel that I'm kind of in limbo.  I have two genetic mutations that predispose me to a bunch of different cancers, and I'm freaked out, so I can't imagine your level of stress having already had multiple cancers! Just wanting to send some positive thoughts and support your way. 

pat1965
Posts: 6
Joined: Jun 2017

Hi Suki, nobody said the probable, its just me assuming. I'd rather expect the worst and be wrong than the opposite. Kind of survival strategy.

I am thinking about getting a genetic evaluation done this time, too. BRACC came negative. They considered Cowden syndrome, but I didn't take the test for it (never showed other symptoms except for the cancers). I always thought my cancers were hormone related, annow kidney... Anyway, I kind of expected it and look at it as closely as I can, but, cancer free for 6 years, I thought that maybe it left me... Having been there so many times, all I want is to get the info so that I can move and get all this behind me as soon as I can. That's what I am anxious about. Hoping for the best for you!

suki1724's picture
suki1724
Posts: 37
Joined: Jun 2017

Hi Pat!

I recently found out that I'm  positive for PALB2, ATM and I have a variance of PTEN, (which goes along with Cowden's syndrome).  The genetic counselor was shocked that I've made it to 51 without getting cancer with my genetics and the fact that there is sooo much cancer in my family.  I feel like a cancer time-bomb!   I am in the process of finding a surgeon for a prophylactic mastectomy, and I've been side-lined by this kidney thing!  I also have a thyroid nodule that was "indeterminate", and now that I know about my gene mutations, they will have to look at that again too.  

I am also a person that expects the worst and then it's a wonderful surprise when things go well, so I totally get it!  :)

pat1965
Posts: 6
Joined: Jun 2017

Suki, we have so much in common! Only my cancer time-bomb has exploded earlier... I am 51, too. My first cancer was at 39 (thyroid) and when I found out I was pregnant with my 3rd daughter, who happens to have Down syndrome. I knew I was going to have cancer one day, but never imagined it would be before 40. My mother died from breast cancer at 56 - the same kind I had later on and my father's mother died from liver cancer - although we are not sure what the primary was. My father has prostate cancer. I did full bilateral mastectomy and had silycon implants on. So far I have managed to find out and treat everything early.

APny's picture
APny
Posts: 1984
Joined: Mar 2014

Pat, the waiting is terrible but even if it's cancer it's so small that a partial nephrectomy would most likely be the end of it. As for the other growth on your right kidney, it's a good sign that it hasn't changed and is probably a cyst. Having bilateral kidney cancer is pretty rare. I had a partial neph 3 years ago and the worry and anticipation were way worse than the surgery and recovery. Not a walk in the park of course but nothing unmanageable. I was surprised how well I did and how quickly. Hang in there!

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Haven't heard of anyone's insurance denying surgery for a renal mass because it was on the smaller side vs big and ugly. It's small enough that a wait-and-watch approach wouldn't be unheard of, but it's also large enough that surgery would be reasonable. 

Allochka's picture
Allochka
Posts: 911
Joined: Nov 2014

I can't imagine what you've been through! We have a member here whose small kidney lesion was monitored for 1.5 years and had barely grown. It appeared to be RCC when removed, but even during 1.5 watch and wait it didn't get mets. Kidney cancers are rather slow growing, so it is kinda safe to wait  some months with small tumors. Wish you luck and no more cancers!

Nattybo
Posts: 2
Joined: Jun 2017

tomorrow I go in for kidney-focused CT scan. A 1.2 cm mass on my left kidney was found 2 weeks ago when I visited the ER fearing appendicitis after a week of fever and abdominal pain. I was diagnosed with stage 1, hormone receptive breast cancer 2 years ago, and I am terrified to be facing another battle with cancer. I don't feel I have the strength to do it again. I hope and pray we both get good news. But I am bracing for the worst and terrified my lovely 9-year-old daughter will be without her mother. I am happy to have found this board, where I can share and learn from others. 

icemantoo's picture
icemantoo
Posts: 3273
Joined: Jan 2010

Natty.

 

At 1.2 cm, whatever it is, it was found early. Lets hope it is not C, but if it is it is as close to 100% curable as can be. It may even be too small to determine. Before you know it you will be around for your grandchildren.

 

 

Icemantoo

Kidney_Cancer_Kid
Posts: 27
Joined: Feb 2017

Pat

Please know that I wish the best for you.  I pray for your healing.  I pray for everyone to be healed.  These tumors rob us of too much.   We feel scared, confused, angry, etc.  I just know that with others wishing us well some bit of the tumor will shrivel under the positive pressure.  Please stay strong!

My surgeries for my tumors happen in 2003 and then 2010.  I survived.  You survived a lot, so you are a fighter too!  Again, please stay strong!

Kidney_Cancer_Kid

 

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