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HELP! JUST DIAGNOSED WITH RENAL CANCER! NEED A FRIEND TO TALK TOO!

TOM659
Posts: 2
Joined: Dec 2003

AS WITH MOST OF YOU, THE WORST GOES THROUGH YOUR MIND WHEN YOU ARE TOLD YOU HAVE A MASS on your kidney. I WAS TOLD IT IS ABOUT 2CM BIG AND AT FIRST I WAS TOLD IT WAS TOPICAL BUT LATEST CAT SCANS HAVE SHOWN IT HAS STARTED TO GROWN IN. my doctor now wants me to see another doctor who spealizies in lyposcoptic but he can't see me until Jan 8th. I WOULD GREATLY APPRECIATED IT ANYONE CAN CAN ME IF THEY WENT THROUGH WHAT I AM GOING THROUGH...........
A) PAIN!!!!!! I KEEP GETTING TOLD THAT THERE IS NO PAIN ASSOCIATED WITH IT BUT I HAVEN'T HAD A DECENT NIGHTS SLEEP IN 6 WEEKS, I AM TIRED ALL DAY AND CANNOT CONCENTRATE. MY DOCTOR JUST BRUSHES IT OFF WHEN I BRING IT UP. HE IS CURRENTLY ON VACATION and no other doctor seems to be around because of the holidays or wants to get involved and says I should go to the emergency ward (yeah right, and wait 12 hours for someone to see me).
b) the fact that no doctor seems to be in no rush, in fact my doctor routinely takes 4 to 6 calls during my visits and says "there's no hurry, you're young (i'm 36).

i cannot tell you the level of frustration i'm feeling with doctors right now and feel so helpless.

If I'm being a baby, please feel free to grow up because there are worse people on here.

SOMEONE PLEASE TALK TO ME< I FEEL SO ALL ALONE!

THANKS

Joani9163
Posts: 2
Joined: Nov 2003

Hi Tom, my name is Joani and I am 40. I also have rcc. I was dx in July of 2003 and had my left kidney out in Aug 2003. So far things are going ok, it's been 4 months now. I go back for my 6 month check up in Feb. If you are not happy with your dr find a new one. One of the most important things you can do for yourself right now is get a dr that you are comfortable with. If your not happy with the dr taking care of you, you will not be happy with how things are being taken care of. I was lucky my dr was wonderful with me. I woke from a sound sleep at 4 am on morning in so much pain in my back and left side I couldn't even sit and I was so short of breath from the pain. I had been tired for a few months but I blew that off but the pain was so bad I went to the dr. They found 2 tumors in my kidney 1.5cm and 5.5cm. I was operated a few weeks later and they removed my whole kidney. My 3 month ckeck up was ok and now I am awaiting the next and praying. If you'd like to talk more feel free to e-mail me. Take Care And God Bless Joani

DiAMonDLigHtS
Posts: 3
Joined: Jan 2004

Hi Tom. My name is Lorraine and I was diagnosed with Wilm's Tumor at 9 months and then I relapsed at 3 years old. I've had one kidney removed in 1988 and the 80%of the other one removed in 1991.

I agree with Joani completely. You need to find a doctor that you are comfortable with. I also want you to know that you are not alone. There are a ton of people going through or have gone through the same thing that you are right now. You just need to find them. Email me if you want to talk to someone who has been in remission for 13 years.

DiAMonDLigHtS
Posts: 3
Joined: Jan 2004

Hi Tom. My name is Lorraine and I was diagnosed with Wilm's Tumor at 9 months and then I relapsed at 3 years old. I've had one kidney removed in 1988 and the 80%of the other one removed in 1991.

I agree with Joani completely. You need to find a doctor that you are comfortable with. I also want you to know that you are not alone. There are a ton of people going through or have gone through the same thing that you are right now. You just need to find them. Email me if you want to talk to someone who has been in remission for 13 years.

gfpw
Posts: 3
Joined: Jan 2004

Hi Tom,
I am Doug. I had the pleasure of being diagnosed with RCC on New Year's Eve. Yep me and a bunch of drunks in the emergency room. I am scheduled for surgery on Feb 3 and will be greatly relieved when my visitor has left my body. My problem is I am a Physician's Assistant specializing in shock/trauma in pediatrics. I worked for years at the National Institutes of Health in reseach so I am really familiar with this disease. Matter of fact my Section Head died of it in 98. So I have been a total basket case too.
I wanted to address your comment about pain and tiredness. I am gonna use an old down home comment - Yeah Buddy! The only reason I went to the ER was because of the back pain. I thought I was dropping a kidney stone.

I am fortunate with my doctor. I know the group and they listen and they take action. We found this on New Year's Eve and I am having the surgery in Feb. My wife, an immunologist, feels even that is too long. If your doctor doesn't listen, and your insurance allows it. Change Doctors. I wish you and everyone here luck and a good prognosis.

Redhead529
Posts: 2
Joined: Jan 2004

HiTom. My name is Marie and I had my right kidney and ureter removed in Oct, 2000 and have a clean slate since that time. Just had a small growth in my bladder but it was benign. Chin up!!!! Your positive attitude has a lot to do with your outcome. I agree with most of the people, find a Dr. that you trust and that will TALK to you (preferably a female). I know, I have dealt with both. I wish you the best and God be with you.

erini
Posts: 2
Joined: Jan 2004

Sorry to hear of your diagnosis. I was diagnosed with Transitional Cell Carcinoma of my left kidney. I lost my kidney and made it through Chemo. I am going to my oncologist this week for a three month check up. I know it can be scary, learning you have cancer. Both my parents had cancer, so I guess I had time to think about getting cancer. Try and stay positive. Attitude is everything. I always considered myself lucky. They may have caught it in time. I could still be walking around with the stuff in me growing every day. Learn as much as you can and don't be afraid to ask questions. You oncologist and oncology nurses are your best support. Good Luck

iRemember
Posts: 1
Joined: Feb 2004

it's ok i waz 5 when i waz DIAGNOSED with cancer i didn't no what it waz but it was wierd all these docs. were around me then they put a sign that said DO NOT PUSH i think the worst part was getting a CAT-scan because they had to tape my arms so i wouldn't mess it up. DON'T WORRY IT'S OK !!!

anderson11
Posts: 1
Joined: Jan 2004

Hello Tom.
My name is Loretta-I was diagnosed 9/03 as having renal cancer-I had been going to the dr several times for pain at my sternum area. This started in 1/03. It was decided way back then that I had probably pulled a muscle during the holidays. I had a ct and nothing showed up. I went back and had another ct and it showed a mass on my left kidney and that matastization had occured at my sternum. My kidney was removed 9/03. My sternum was removed 12/03. I am still recovering from both surgeries. I had no pain except at my sternum area. Don't know why it didn't show up last janurary. Makes me wonder if it was not missed??
I am currently doing 14 radiation treatments. Then I guess at some point after that I will be doing some protein treatments to build up my immune system.
Let me tell you my family dr was right on it and I had a onocologist appt within days. Everything went really fast. I'd say talk to your dr or get another.
Right now I am dealing with day to day stuff. Anyone else? I'm trying to take one day at a time-sometimes one hour at a time. Anyone out there to talk to?

leftilou
Posts: 5
Joined: Jan 2004

Hi Tom. My husband was diagnosed with stage 4 kidney cancer in August 03. He had a nephrectomy and had a bone marrow transplant on Nov. 18. He is still here 5 months from diagnosis and holding his own. Go to a website by Steve Dunn and you'll get lots of info, it sure helped me in my research. Hang in there!

helenl
Posts: 1
Joined: Feb 2004

Good Morning Tom659:
Our son Mark is 32yrs. old and also has arthritis of the spine. He has kidney cancer in both kidneys. He had his first kidney surgery in Nov./03 to remove tumor on left kidney and doctor had to remove 25% of his kidney. Now he is facing another surgery to remove tumor on right kidney. My husband and I have been trying to find another person near his age to talk to.
How are you doing?? What type of doctor are you seeing?? From what I've heard this type of cancer is beatable . If you would like to correspond, we would like to hear from you too.
Good Luck
HelenL

LucyB
Posts: 2
Joined: Jan 2003

Hi Tom. My mother is a stage 4 renal cell survivor. The best advice is to get the kidney removed. also - SAVE YOUR TUMOR! they are doing so much right now with vaccine therapies. Go to the Steve Dunn website to check out clinicals and other options. go to a major cancer center for the best doctor. New York, Philly, Houston, LA - all have good programs. My mother is at Sloan Kettering. After her kidney removal they said they had got everything out. It means zilch though - 6 months later she had mets to both of her lungs, liver, and muscles. we immediatly went on Peg-Intron (pegalated interferon). 7 months later she is doing wonderfully and has no sign of cancer anywhere in her body. She also prayed every single morning and evening. She used a lot of healing prayers that people sent her. she also went on zoloft for depression - that helped the family a lot! Have someone else halp you with all the reading and sites on the internet. Its a lot of work but someone has to do it - BUT the patient doesnt necessarily need to read every statistic. the numbers can be daunting and that is not good for ones emotional health. positive thinking is very important. and get a new doctor - one that specializes in renal cell!

JoBubba's picture
JoBubba
Posts: 8
Joined: Feb 2004

My husband has kidney cancer. Diagnosed in May 2003 as stage IV with large tumor on hip and also on rib and in lungs. Has been through so much. It is tough, but I am in agreement about finding a good team of doctors, research, praying for healing, asking friends/family for help, and never, never, never give up hope! There is a great spiritual book written by a kidney cancer survivor, Larry Burkett, called Nothing to Fear. It helped me a lot. I have read quotes to my husband. He had RF ablation and embolization done on the tumor in the hip, had kidney removed, and then had high-dose IL-2. Another embolization on the hip a few weeks ago, which has been a slow, rough, painful recovery...why I came to this site for the first time tonight. Keep the faith!!!!

jackman
Posts: 1
Joined: Feb 2004

Don't mess around ! Find another urologist asap and get yourself in there for an examination. In 1996 I had blood in my urine. Doctor visit confirmed this the next day, although I could see no blood. The GP sent me to a urologist who
performed a kidney xray, confirming a large mass. The size I do not know. I had the kidney removed within 5 days of this. It has now been 8 years and I am cancer free. (Thank God). I had a full abdominal cat scan each yr. for the 1st 2 years and after the 5th yr. Beyond that, I have a creatine blood test 1 x yr. + a chest x-ray. I just get the cat scan ea. 5 yrs. As long as they remove the cancer before it spreads to the fatty tissue (surrounding the kidney), I was told I should be okay. That's what they told me in 96 and after the sectioning and analysis of the removed tissue, they confirmed it had all been contained w.in the kidney proper. When I had this surgery, they had not yet developed the laproscopic technique. So, I got the 13 inch incision which has been typical for this surgery.

I wish you all the best in your treatment. This cancer has a very good success rate for survival if caught early. The new surgical techniques are a lot less painful and your recovery time will be much less.

By the way, after my surgery, I met someone in my home town who had gone through basically the same scenario (10 yrs. earlier). She remained cancer free also.

Keep your hopes high. Many people survive this!

jujubeads
Posts: 3
Joined: Jan 2005

I, too, had RCC surgery. Nephrectomy and adrenal gland removal on 12/16/04. Path. rept said the tumor had grown into the fatty tissue. I am in the process of deciding who and where and what for treatment. My hometown only does chemo and radiation. I want to explore all my treatment options. Any suggestions?

AuthorUnknown
Posts: 1563
Joined: May 2006

Hello,

You may want to contact the American Cancer Society's National Cancer Information Center to see if they can be of assistance in helping you to determine resources to help you find where you can get treatment. Cancer Information Specialists are available 24 hours a day, 7 days a week at 1-800-227-2345.

I hope this information has been helpful.

Take care and be well,

Dana
CSN Dana

Us2004
Posts: 2
Joined: Feb 2004

Hi Tom:
My name is Barb and my husband has also recently been diagnosed with rcc. I agree with what everyone else has written here. Your doctor should be an ally, and if he/she isn't then find a new one who will be. Read anything you can find about the disease, but don't let it overwhelm you. I contacted Cancer Centers of America, and even though we aren't planning to go there, they were more than willing to answer any questions we had, sent us information that was truly helpful and call periodically to see how we're doing. Ask friends for help when you get overwhelmed, and you will. Understand that feeling alone, scared and helpless are normal and no one will fault you for any of these, unless you don't take charge of the situation and find the help you need. Take one step at a time, find a doctor you like, trust, and can talk with, find out about the disease so you can make an informed decisions and create a support system of friends, family and anyone else you can think of. Talk about what you learn, talk about how you're feeeling, the more you include people the less alone you'll feel. Please let us know how you're fareing. Know that you are definitely NOT alone. Take care and you'll be in our thoughts and prayers. Barb

onedayatatime
Posts: 1
Joined: Feb 2004

TOM,YOU AREN'T ALONE ON THIS NEW THING.I TOO HAVE RENAL CELL CARCINOMA,AND IN 1994 I WENT THRU WHAT YOU ARE GOING THRU NOW,.JUST LET ME TELL YOU THAT THIS TYPE OF CANCER IS SLOW MOVING,MY LEFT KIDNEY WAS REMOVED BECAUSE IT HAD ALREADY FORMED ITS OWN BLOOD VESSELS AN AND ENVELOPED MY KIDNEY.I WENT THRU THE OPERATION JUST FINE.DR TOLD ME THAT I WOULD BE OK FOR 10 YEARS,BUT IT CAME BACK IN 1999 AND WAS TOLD I WOULD DIE IN 3 MONTHS,BUT I DIDN'T.I WAS BOUND AN DETERMINED TO LIVE,THE CHEMO I GOT FOR IT WAS INTERLUEKIN-2 WHICH IS INJECTIONS IN THE TUMMY.THE SITE HAS TO BE FROZEN FIRST,AND THEY GIVE YOU A BAG OF DRY ICE TO PUT ON YOUR TUMMY TO NUMB IT CAUSE IT STINGS A GREAT DEAL.IT ALSO CAUSES A FEVER,SO IT WOULD BE WISE IF YOU EVER GET TO SEE A DR.TO TAKE TYLENOL BEFORE YOU GET IT.THIS IL-2 IS DONE EVERYDAY EXCEPT SATURDAY AN SUNDAY.NOW YOU NEED TO SEE A KIDNEY DR.I AM STILL DEALING WITH THE CANCER,WHEN I HAD IT IN 1999 AND ALL THE SHOTS,IT WENT INTO REMISSION BUT NOT FOR LONG CAUSE IT CAME BACK INTO MY BONES....FIRST WAS MY HIP BONES,AND I HAD TO HAVE RADIATION TREATMENTS.22 OF THEM.THEN BACK ON IL-2 FOR 6 MONTHS....I AM ALONE IN THIS NEW ADVENTURE AND IT HAS WENT INTO MY LEFT RIB AREA.7TH & 8TH RIBS AN STERNUM. I DON'T KNOW WHERE YOU LIVE,BUT WHERE I LIVE THERE IS A CANCER CENTER CLOSE ENOUGH FOR ME TO GET TREATMENTS.PLUS YOU HAVE TO HAVE AREDIA WHICH IS TOO KEEP YOUR BONES FROM BECOMING BRITTLE...THIS IS A MONTHLY THING ALSO.IT HELPS AND YOU KNOW WHEN IT WEARS OFF BECAUSE YOUR BONES START HURTING... IF YOU HAVE ANYMORE QUESTIONS FEEL FREE TO ASK ME,I AM 52 YEARS OLD NOW,BUT HAVE REALLY BEEN DEALING WITH THIS SINCE 1994.SO YOU HAVE A LONG ROAD AHEAD OF YOU..GOOD LUCK AN GOD BLESS YOU.

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