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I'm fine

Kathy hamilton
Posts: 6
Joined: Mar 2015

I was diagnosed with Renal Cell Carcinoma in 1999.  I was so scared.  I spent so much time on line, there was so much doom and gloom it actually messed with my mind more than the cancer itself.  I had my left kidney removed. Stage 2 grade 3.  Fast forward 15 years.  I am healthy and sometimes think about how I wish I could have found some good information about Kidney Cancer to give me hope.  There are so many sucesses out there, but when things are going great we dont seem to have a need to research the subject. I do know not everyone is as fortunate as I was, but there are a whole lot of sucesses.  I have a friend who has just been diagnosed with Kidney Cancer, she said she felt so much better talking to a friend who has been there, so to speak, it prompted me to join this site to give someone a positive vibe.

jason.2835
Posts: 337
Joined: Nov 2014

Kathy,

we are a haven in the madness, I think. There is a lot of outdated info on kidney cancer with research that is nearly 20 years old; it's come a long way since then. 

Trust me there are a LOT of people who like to hear that you are healthy 15 years later (heck, I'm one of 'em!)  I just had my left kidney removed back in October. Stage 1 grade 2. It's always nice to hear people are doing well years later. 

Thanks for sharing your story!

- Jay

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

Kathy, 

I had my neph back in 2002, long long ago and like you I have been trying to help the newbies. Sometimes I get accused of iceing them down. It is good to have another old timer helping to put everything in perspective.

 

Icemantoo

Kathy hamilton
Posts: 6
Joined: Mar 2015

My friend that I referenced earlier, hasnt had surgery yet.  Her tumor was just found on the kidney.  Since you have been on the site a while, what are your thoughts of tumor on the top of the kidney?  3 Doctors in the ER told her they believe it is cancer after 2 MRI's.  They want to do a biopsy, I just dont understand why they would do that with a tumor that is not encapsulated. I am trying to do the research for my friend, so she will stay away from the Doom and Gloom

 

Kathy

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

Kathy,

 

Sees a little strange they want to do a biopsy without a CT. What is the size of your friend's tumor. My layman's understanding is that most of these tumors are on top of the kidney. Why would they do 2 MRI's. She also needs to talk to a Urologist specializing in Kidney Cancer, not just 3 ER doctors , at least one of whom I presume ia a Radiologist.

 

Icemantoo

Kathy hamilton
Posts: 6
Joined: Mar 2015

She has Kaiser, so is still waiting to see a uroligist, I am trying to get her to expedite without alarming her.  I did tell her to sask the uroligist why she would need a biopsy, if they are so sure it is Kancer, Just get in there and take care of it.  They wanted to wait to the end of the month for my surgery, I started yelling no, get this thing out of me.  They moved my surgery up.  I didnt know it at the time, I was just hystericle.  Moving it up could have saved me a lot of heartache, maybe my life.  When she sees the uroligist. I will ask her the size, and why the biopsy.  Im trying to guide her without alarming her.  Thanks for your help.

 

 

Kathy

Kathy hamilton
Posts: 6
Joined: Mar 2015

Stage 1 grade 2....pretty good news

Allochka's picture
Allochka
Posts: 869
Joined: Nov 2014

Thank you very much for posting your story.

15 healthy years strengthen hopes of newbies and their caregivers. 

Abd about doom and gloom - this board is completely different, I was so surprised that cancer board can be that positive and reassuring ( special thanks to you, Iceman), it helped me immensely.

wish you friend to be allright! 

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

You give us all hope

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

That sounds almost as good as not having cancer at all!

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

Hi Kathy,

We do love to hear the success stories...most of them ARE success stories, luckily. But we always do have the possibility of our condition worsening, hovering in the backs of our minds....and sometimes in some of the cases here, our worst fears do happen. This forum is good for support and advice as well as information.

I was stage 3, grade 2, 13 cm tumor removed December 2013. So far, so good!

Now, with your friend....definitely go to a specialist in Kidney Cancer! I was told they don't do biopsies on kidney cancer tumors as that increases the chance of spreading. Thing is, it will need to be operated on anyhow, so why take the chance?

Hugs

Jojo

Kathy hamilton
Posts: 6
Joined: Mar 2015

I agree with you Jojo.  I am tested every year for 15 years.  when testing comes up, even though it has been so long, I get terrified.  All those old fears come back.  My Uroligist gives me an ultrasound every other year, in between exrays and blood work.  

aamdsi
Posts: 284
Joined: Apr 2014

Kathy,

For the shot of Hope 8-) 

Made a grand spring morning/day even better. 

Kathy hamilton
Posts: 6
Joined: Mar 2015

My Primary Dr. She has been my Dr for at least 12 to 13 years and knows me. She said that we are going to get this taken care of a quickly as possible and that the urologist they have assigned to me is one of the very best in the Kaiser system. She is concerned that two major surgeries in such a short time increases the problems of infection and blood clots. I told her I don't want to wait any longer than I have to and she agreed with me. She said all of the reports and charts have already been send to Dr. Poon and that she really wants me to stay with him. She also said this isn't new that I have had it a long time, that the tumor was kind of like lava that it imploded on itself and bled into itself causing the pain. Since that pain has stopped, the urgency has past. If the pain should start again, I am to get to the hospital as quickly as possible to have it taken out immediately. She is convinced that I have had this for several years. She said: "You have a tumor growing on your kidney, you are not sick. You have to keep busy, do the things you usually do." So, I will go dance. I see Urology surgeon next Tues, at which time a date for surgery will be set. When I had my knee surgery, I didn't have general anesthetic, and she was pleased to hear that. There is no hope for laproscopic surgery, the mass is to big, I will have an incision from stem to stern, looking at 6-8 week recovery. 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

They do laproscopic even with entire nephrectomies. They sometimes call them combined laproscopy/open. I had my right kidney removed entirely and it was done with robotic laproscopy. The mass was 7 cm. I did end up with 1 incision that was pretty large.

Not all docs do laproscopy. If she wants it, she may have to push for it.

The best kind of urologist for her see is a specialist called a urologic oncologist. They are urologists that specialize in tumors/masses of the genitourinary system. This type of urologist can probably tell from the CT what she has going on. If it's large, it's most likely kidney cancer.

They grow rather slow and she's probably had it awhile. That part I agree with. A couple of weeks or a month isn't going to make a lot of difference unless she's having pain or bleeding.

They don't generally biopsy these. If the mass is large enough, the kidney needs to come out anyways. They'll find out from the pathology report what it is.

Todd

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