Renal Cell Carcinoma (Kidney Cancer) Support Group

Renal cell carcinoma, also known by a gurnistical tumor, is the most common form of kidney cancer arising from the renal tubule. It is the most common type of kidney cancer in adults. Initial therapy is with surgery. It is notoriously resistant to radiation therapy and chemotherapy, although some cases respond to immunotherapy.

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agentmnm 10/27/2010

Hi, I am new to this group having discovered you recently as I was home recovering from a right laproscopic nephrectomy on 10/4/10. I had a 12 cm tumor( localized to kidney, clear margins with no lymphnode involvement) which was diagnosed as a chromophobe.Thankfully the surgery went well and I was out of the hospital after one night. I have returned to work but still have discomfort ( itchiness, mild pain) around incision.
I want to thank this group for providing me with some comfort over the past few weeks. things moved very quickly for me I was diagnosed 10 days before the surgery. Although it is good to be over with the surgery, I have mixed emotions feeling sad and mad that as a healthy 44 year old woman i was diagnosed with cancer but also lucky that this was found , that I have agood prognosis and that I had good health care.
I was wondering if anyone else on this forum has been diagnosed with a chromophobe tumor? I was told that the furman grading scale may not be accurate for this kind of tumor does anyone have any knowledge/information about this. Also I would love to hear about the followup schedule that people are following. My doctor does not want me to have ct scans every time because of the radiation exposure. so I may have MRI after the first year. Does anyone else do this.
Would also love to hear from long term survivors.
Thanks again for this wonderful forum

New member
Margo

msgrace 10/27/2010

Hello Margo,

Welcome to the DS site and family! There are many wonderful, caring and knowledgeable people here, and know you'll make some friends.

Let me say that I'm sorry about the cancer. It definitely has no respect for any of us. My husband was first diagnosed in October, 2007. Unfortunately, his RCC metastised to both lungs in March, 2009. He continues to do well and feels well. What a blessing!

The normal follow-up schedule for us is seeing an oncologist every 3 mos. They alternate between chest x-ray/bloodwork and CTscan/ bloodwork. Our urologist did not recommend this after the surgery, but we chose to have an oncologist. I'm so glad we did, because the mets were spotted very early.

Unfortunately, I'm not familiar with chromophobe. Hopefully, someone here is though. It sounds like you were very fortunate and have an excellent prognosis.

Take it easy and give your body time to heal, Hon. I look forward to getting to know you.

Love & Prayers,
Ms Grace

agentmnm 10/27/2010

thank you for responding so quickly. I will try and take your advice and give my body time to heal but it is so tempting to try and get back to my usual hectic life. i especially miss my fitness routines which are so important to me.
I thank you for sharing your husbands history and I hope and pray that he continues to do well and feel well.

Margo

Angelpuss 10/28/2010

Hi Margo and welcome to this very caring site. It sounds as if your surgery went well and your prognosis is good, hich is great.
I don't know anything about a chromophobe tumour but other people are sure to.

Take it easy and take care of YOU

Hugs Angel

deleted_user 10/28/2010

I am kind of jealous. I too had a 12 cm tumor but the docs thought I was kind of funny asking about laproscopic surgery. - at least THEY got a good laugh over it - I am sure you are finding that everyone is different and if you have second thoughts about treatment or follow ups then get a second opinion. my oncologist had no problem providing contacts with key people at major facilities across the country. I am also "cancer free" but because I had cells spread to four lymph nodes, the odds of a recurrence are against me. so, I have had CT scans (and one Pet scan) every three month or so since my 8/09 surgery. of course the docs and the scan people down play the risks but you need to balance one against the other and in my case I chose to keep watching. Google is a great source (and an info overload as well) to research your chromophobe type. I used "living with one kidney" as my search term and found several forums like this one (and no end of educational data) that are great for support and research. good luck and too bad you do not have a huge scar going across your abdomen (like mine) it would be a great way to scare the folks on Halloween... Rich

agentmnm 10/28/2010

the tumor was thought to be about 10 cm from the ct scan. i jiust found out that it was 12 cm when i met withthe doctor for follow up post surgery. if it makes you feel better, the drs did laugh when i asked about a partial nephrectomy.

margo

deleted_user 10/28/2010

Hi Margo,

I am glad to hear you are doing well and you have a good prognosis!

This is a great site and very supportive.

It's nice to meet you.

Carrie :)

deleted_user 10/29/2010

Welcome to the group, we are here if you need us

deleted_user 10/29/2010

Welcome to the group. I too like to workout. The doctor told me I had to wait one month before I started again. To get by, I did a lot of walking. I was up to about 8 miles a day till I went back to work. That slowed me down some, but I still walked after work. After the month, I started again, SLOWLY. You will be surprised at how much tone you have lost. It was all I could do to just do 5 situ ps. Don't worry, it will return. Just take you time and build yourself back up to your normal routine.

wanda61 10/31/2010

Hi Margo, Welcome to this site. I am sorry you have to be here but it isa wonderful site for those who are experiencing what you are going thru right now. I am the wife of a 12 year survivor of Renal Cell Carninoma. My husband Steve has been stage 4 since 2002. He has been a warrior from the beginning. He has a good quality of life and has been on Sutent for the past 4 years. I tell you all of this to give you hope that you can deal with this and continue to live your life. Good luck to you and I would be willing to answer any questions you have. God Bless, Wanda

wanda61 10/31/2010

By the way, I don't think you should wait a year for futher test. We went to Duke University for a second opinion and was told that my husband Steve should be checked at least every 6 months. I counted recently and he has had 33 c-t scans since his dianosis in 1998. He will light up under a black light. LOL Good luck to you, Wanda

agentmnm 10/31/2010

thanks for the welcome and for your advice. i plan to get a few oponions as to the follow up schedule and come up with a plan. i will definetly be checked every 6 mos at least for the first few years.

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