New to site but thank goodness I found it!

chyr

Had a dull backache foever!!! Pee'd blood the night bfore they found kidney cancer on April 16, surgery May 5, removed left kidney and per surgeon, all of cancer (tumor 7.2 x 7.8 x 5). There was none outside capsule and scans then showed nothing anywhere else. I am now seeing an oncologist and in preparation for chemo (clinical trial EC2805) I had scans last week, and I have a spot on my lung.

Anyway, everything I have found, read or studied has a very grim outlook and for the past two weeks, I have been finding that is coloring my outlook on everything. My family thinks since the surgeon said "all clear" that everything is fine and there is no reason for me to be concerned, have "scanxiety" (I love that word) or even have the chemo.

I have no one I can talk to that is close to me, and everything so far online has been so negative, find this tonight was a God send.

I am 53 yrs old, I did smoke until July 28th of last year, I'm overweight and I worked in a rubber factory for 2 1/2 years about 15 years ago.

I guess I just wanted to find someone who has what I have, who has survived or who understands sitting there in that waiting room for the scan, feeling like the most alone person in the world.

Thanks!
Cheryl

donna_lee

Yes, been there.
Cheryl,
I just returned from a week vacation, and don't have time to give a lengthy reply, now. But will get back to you in a few days and offer support. It's a scary time, I know. Hang in there.
Donna

imbkuz

Hi Chyr
I'm sorry that you have to join this club but maybe we can help. You have every right to feel like you do. People mean well when they tell you not to worry but it's your body. Before I can really say too much what were you told about the spot on your lung? Did they give you the pathology report, Fuhrman grade,Stage and what type of renal cell carcinoma? Did they tell you why you're on a clinical trial and are you seeing an oncologist who specializes in renal cell carcinoma? Also don't read the statistics everyone is an individual and it may not be all doom and gloom. We all have hope. Look on here about the CURE magazine. There was an encouraging article in it. kidneycancer.org forum might be helpful to you where you can read some encouraging stories, ask questions, and download the We Have Kidney Cancer booklet. I think that will help you.
Keep us posted Cheryl and Bless You.
Regards
imbkuz

Rob FWNJ

Your not alone
Hi Cheryl,
I am very sorry that you had to join this cancer club! There are so many of us who have been blind sided by this but I would like to offer you some hope. Unfortunately for me I have a family history of RCC. Almost 12 years ago my father passed from this cancer and there was little that we could do for him at the time. Now there are new surgical techniques and many very promissing drugs that appear to work well. If you read the blogs on Kidneycancer.org you can see some very positive feedback. My experience to date has been much better than my fathers! Please make sure you see an oncologist who specializes in kidney cancer and also learn about your treatment options and current studies. Also ask us, your new found friends any questions you may have. I'm sure someone here may have experienced something similar or can point you to the answer. If I have an answer I would be happy to share what I know.

Sincerely,

Rob

donna_lee

Rob FWNJ said:

Your not alone
Hi Cheryl,
I am very sorry that you had to join this cancer club! There are so many of us who have been blind sided by this but I would like to offer you some hope. Unfortunately for me I have a family history of RCC. Almost 12 years ago my father passed from this cancer and there was little that we could do for him at the time. Now there are new surgical techniques and many very promissing drugs that appear to work well. If you read the blogs on Kidneycancer.org you can see some very positive feedback. My experience to date has been much better than my fathers! Please make sure you see an oncologist who specializes in kidney cancer and also learn about your treatment options and current studies. Also ask us, your new found friends any questions you may have. I'm sure someone here may have experienced something similar or can point you to the answer. If I have an answer I would be happy to share what I know.

Sincerely,

Rob

I'm back, as promised.
I'm 66 now, never smoked, seldom drank, taught PE or was physically active and then wham, 2006 diagnosed with Stage IV RCC-clear cell type that had mets to liver and nodes. I had humongous surgery to remove kidney, left lobe of liver, set of nodes, congenitally defective gall bladder, and several test wedges out of right half of liver (just cysts). The oncologists in Oregon don't like to give "chemo" unless there is a diagnosed, active site they can follow, so there were no drugs. I did grow more cancerous nodes (kinda like button mushrooms -hah-) and had surgery in 2007 and again 2008 to have them removed.

This year we have been watching a spot in my liver, which may be another cyst. CT's in Jan, March and May. No growth between Mar and May, so next CT is set for mid-Sept. Had a check up with oncology nurse yesterday, and everything else is OK.

Support is essential-family, close friends, club members, a cancer support group, church, etc. I participate in a cancer support group that meets weekly and started going before my first surgery. They all have had cancer or were the support person for a loved one. We cheer the good reports, know what a person is going thru when there are rough times emotionally, offer suggestions on anything, and laugh a lot. We are "living with cancer, or the threat of a return." No one is dying of cancer.

There is no pill to make you stop worrying. But becoming educated about your disease and treatment will go a long way to reduce anxiety. Have hope, believe in your ability to get well from surgery and go thru treatment. Let others offer encouragement. Understand that when people ask how your are doing, they do want to hear you are improving. But also realize that with family and close friends, you can share that you may be having a "down" day. It's OK to cry.

Now, go out and plan something nice for yourself. Have a pedicure, rent a good book and take the time to read it, eat at a new restaurant...plan the menu for Thanksgiving, a vacation get-away for next year. Remember, you're going to be around to participate in all this stuff, so make the most of it.

Happy times are ahead,
Donna

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