I want to bring awareness to Renal Cell Carcinoma (Kidney Cancer)

Vinnie B,

I was touched by your story of your Father so...
My dear friend has renal carsenoma. stage 4, was diagnosed about 6 months ago. I have only had the pleasure of knowing her for a very short time (couple of months)but feel like we are best of friends...I was asked to help care for her in the evenings as her cancer had worsened. but my mother took ill & I called away & was was there for about a month. When I returned, she has really taken a down-hill. They say maybe 3 months. She is halucinating, doesn't talk well, shaky, & has to be helped for every movement. As a person who has fallen in love with this dear sister-in-Christ, what can I do to help her & the family? I see her now & she barely knows us!!! How can this cancer be so fast spreading & such little information out there about it? Maybe I have just been in such denial that this was so aggressive! She is a Christian & has been making her peace, and that in istself is easier for all to let her go! As with your father, who was close to the LORD, they know where they are going!! I just pray for her comfort & painless journey now! At the stage she is in, with very little movement & her outbursts at times.....is she closer than the Doctor's are stating perhaps? Thanks for any info you may have!

MsKim

My heart goes out to your friend, her family, and to you. It is very difficult to watch someone you love or care about dwindle to this person that you don't recognize. If I were you, I would find a way to come to terms with the fact that the end may very well be near. My father didn't suffer like that until the last 36 hours or so. He was awake, but didn't recognize my mother or my brother. I wasn't able to get there in time, but he recognized none of us.

If your friend is still here, just find time to hold her hand and be there. If there is any chance that she is beneath all that confusion and unusual behavior, maybe she will know that you are there with her. My dad told me that he would always be in my background. His birthday was April 17 and its now been over 2 years. My heart aches for him and I just make it a point to live life to the fullest, as I promised him. He is remembered and his memory motivates me to go on even more.

I am a nursing student and one of my patients actually had the same cancer, renal cell carcinoma. I was able to talk to this patient for only about 6 hours while I cared for her. She is strong and determined to enjoy her life. Her cancer is in stage 4 and she has opted not to have any radiation. She said that she didn't know about the cancer until she had an xray for another reason. She said that she is ready to "go home with the Lord." She is only in her 50's, just like my dad.

So, to answer your question, you have already done all that you can. You are there for her and a true friend. No one could ask for more.

God Bless You!

Vinnie

I want to help fight kidney cancer. I'm sorry about your father. My husband who was 35 just died last week. It was and is pure hell for me and our 2 kids who both just had birthdays this summer. My husband was just diagnosed June 6th and was immediately stage 4 with 9.5 cm tumor on left kidney with mets to right kidney, lungs, ribs, left hip, lymph nodes, spine and had the kidney removed June 28th but never got the chance to take treatment other than Thalomid for 2 weeks before he died. He ended up having a massive heart attack after many complications and numerous hospital stays these short 2 1/2 months of fighting it. His last days revealed brain tumors 1 cm in size with one being the size of an orange that had grown within 2 weeks (brain was clear 2 weeks prior to that). It had also spread further throughout the spine, to the spleen, and bone marrow (which caused hemoglobin and platelet problems) and lung tumors grew. He was/is the love of my life. Even though he tested negative for VHL as the cause, our children have a 50% chance of developing the gene mutation that causes kidney cancer. I'll be damned if I lose another family member to this disease. Tell me how to help bring attention to this sneaky killer. My husband's doctor says she thinks he had it less than 6 months at the time of diagnosis and another doctor says he's never seen such aggressive kidney cancer (and he specializes in it). My husband also smoked for 20 years which probably contributed to it also. If only he had some type of symptoms to be detected early, maybe he would have had a chance. We (and our family doctor) thought he had bronchitis for a month before his diagnosis. I don't know how to be an adult without him as we started dating my senior year in high school. I wish we would've talked about living wills, etc. because I am not handling what happened well at all. The only way I can think of to possibly help me get through this is to keep the promise I made to myself and God that when my husband got through this (I thought he would be in remission) that I would help in any way I could to make sure no one else had to go through this nightmare. Tell me how to help!

Zenky,
First, I am so sorry to hear about your loss. Kidney cancer is sneaky and very aggressive. My dad, like your husband, seemed to not have a chance against it.

Initially, I wrote to the local tv stations here in the Philadelphia/NJ area, emailed Oprah, emailed the morning shows, and I have gotten no response. Well, one doctor from one of the local news stations did reply and told me that he wouldn't do a story on it pretty much because its not a "big story."

I believe that those of us who are/have lived with loved ones and lost loved ones to this illness should write all these people time and time again. I also think we should contact the local papers. People need to know what to look for since symptoms can be masked.

I am interested in writing a book telling the different stories of those of us that have experienced this awful cancer in one way or another. I just need help.

Labor Day just passed, as you know, and it reminded me that his last Labor Day was one filled with pain all over his brain, as he used to say.

We must not give up on bringing attention to this awful cancer. Unfortunately, it will take something like a celebrity dying of it before anyone talks about it. Let's try to prevent that, though.

You can reach me at my email address and anyone else who is interested in bringing attention to this awful killer....--- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---.

My heart and prayers are with you and your family.

Deepest sympathy,
Vinnie

Hello Wanda, I live in the dallas area and my husband just discovered he has a mass near the kidney and adrenal glands. Immediate further testing is scheduled. I am doing some independant research to find out more information. I would like to know the name of your doctor. I was touched by your story.

Thanks,
Elaine

Hi Elaine,

My doctor's name is Jeffery Cadeddu. He is a great doctor and the one who discovered the procedure(radio frequency ablation(RFA). Copy and paste the link below into your browser and you will see his information. Click on CONTACT INFORMATION at the top of that page and it will give you the phone number, etc. Let me know what what you find out. It will be 4 years this June since I had the surgery. It is really awesome.
I live in Rockwall, TX, which is 25 miles east of Dallas off 1-30.

Wanda

http://www8.utsouthwestern.edu/UTSW/FacDir/CDA/FindADoc/Resu

SIGNIFICANT PUBLICATIONS:

Ogan K, Jacomides L, Dolmatch BL, Rivera FJ, Dellaria MF, Josephs SC, anc Cadeddu JA, "Percutaneous radiofrequency ablation of renal tumors: technique, limitations, and morbidity" Urology, 60:954, 2002

RECENT PUBLICATIONS:
Anderson JK, Matsumoto E, Cadeddu JA, "Renal radiofrequency ablation: Technique and results." Urol Oncol., 23(5):355-360, September 2005

Dear Wanda, Thank you so much for your immediate response! My husband had a CT scan today and we are scheduled to see his regular doctor first thing in the morning. It is a difficult day. We live in Garland, in the club hill area. You can email me privately at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- if you would like to. I am going to pull up the information you gave me right now. Thank you so much! Elaine

i am replying to a msg from 2002 - my father has also been diagnosed with this - has spread to his blood, bones, and other organs - any hope for anything for him - i contact you because it sounds like you were researching things for your father - i am so sorry to hear of what happened to you and yours - very terrible disease - until 4 weeks ago, maybe 3, we didn't even know dad had cancer, he's 75 and was still working every day, feeling fine, fell at work and gashed his head and became unable to walk 7-10 days later; upon investigation, the doctors found a small tumor in his brain and so on, until we are at the point we're at today - no treatment, other than Nexavar - he's at home now, feels fine, other than the not walking, and, thank God, is in no pain today. I'd be more than willing to help type the way to more awareness of this disease. I can't help but think that he'd probably be able to whip this if he'd known much sooner. thanks for your time.

Dana

While reading all these wonderful posts, I wonder if we RCC Warriors miss the point when it comes to early detection and more effective treatments. Having been in the big time magazine business for more than 30 years, I can tell you with some authority that publicity, while it feels good and may offer a small amount of help, is not the avenue for earlier detection of RCC. 

It is finding a way--and many researchers are working on this--to recognize this disease before it reaches Stages 2, 3, or 4. It is the lack of symptoms, except blood in the urine and pain from bone mets, that makes it such a cruel cancer. My internist thought I had a bleeding ulcer, but I demanded a CT scan nearly three years ago. I had a bleedling tumor--and 23 more to go with it. I was in Stage 4 before I even knew I was sick...at least that sick. Not the first symptom that said to any my doctors that this might be cancer. As I said, I had to demand the CT scan that discovered the awful spread of it.

So instead of magazine articles and newspaper stories (which are fine), perhaps we would be wiser to put more pressure on the medical world to find some way to understand RCC symptoms better, though for many of us none make themselves known until we are Stage 4 and in the fight for our lives.

The good news is that within the last two years we have added three very effective treatments for advanced RCC. I am on Sutent, now have fewer than four tumors in my body (plus five little ones in my brain), but I am still not living the life I want to live. Had my doctor had a light come on just a year earlier, I most likely would not have found myself in this situation. 

Those of you who feel a little activist about all this might consider writing letters to the Medical Journals. Now that is effective because your target audience is researchers and your personal story told by you is much more powerful than any story reported by someone else, regardless of the medium.

I try to do that in my blog and have had some response from medical professionals. Our goal might be something like: Diagnosis within Two Months. That would save untold agony and thousands of lives. Then we could take one "c" word out of RCC. Cruel.

David Foster

www.mpablog.typepad.com/david_foster

Or search David Foster Cancer 

 

 

 

 

 

I am replying back to Vinnie B's message in 2002.  My mother was diagnosed at stage 4 in 2003.  She had no symtoms as well and was still working hard.  She had a gallbladder attack and that's how it was found.  It spread to a lot of places in her body.  She was on a clinical trial treatment that worked wonderfully for about a year, but the side effects became to much.  She is on another form of treatment now and so far it seems to keep the tumors down.  Doctors gave her 1 year and we are going on 4!!!!

I have been trying to raise awareness here in NC.  We have sent the local news stations emails and letters, and nothing has happened.  I cannot believe that only a handfull of states have a Kidney Cancer Awareness month in March.  We all should have it.  I want to raise my voice and fight for awareness as hard as my mother is fighting for her life.  Not to be selfish, God bless anyone who has any type of cancer, but I get a little frustrated when all we her about is breast cancer.  I want awareness for Kidney Cancer!!!  Most of the time when people are diagnosed its really bad usually because they didn't catch it sooner.  People need to know!!  I will help and I am pushing it in North Carolina.  God Bless All, Take Care!

Melissa