Chromophobe type cancer
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Kathleen

Blackrock, Ireland

#1 Jun 15, 2006
Anybody know about chromophobe type renal cell carcinoma?
Andy

Halle, Germany

#2 Jul 20, 2006
Yes, it is supposed to be less aggressive than other types. A doctor freind of mine says it will never recur, but I have read different information on the web. How big was yours? Any spread?
Kathleen

Braintree, MA

#3 Aug 6, 2006
My husband has a chromophobe and it is atypically aggressive. He is stage 4 with mets to bones. He is in a stage 1-2 trial using serafenib and avastin in combination.
Siobain Donegal Ireland

Sligo, Ireland

#4 Aug 12, 2006
My husband diagnosed 19/06/06 with Renal Cell Carcinoma. Had nephrectomy in St James Hospital Dublin on 03/07/06. Haven't been told what stage and go back for scans mid Sept. We know it was approx 6cm and hadn't spread to surrounding tissue or vena cava. Told small spot on lung but not sure if this is cancer. Can you have mets if the tumour is contained in kidney? Should I be asking for a pathology report ?
Kathleen

Braintree, MA

#5 Aug 13, 2006
Siobain Donegal Ireland wrote:
My husband diagnosed 19/06/06 with Renal Cell Carcinoma. Had nephrectomy in St James Hospital Dublin on 03/07/06. Haven't been told what stage and go back for scans mid Sept. We know it was approx 6cm and hadn't spread to surrounding tissue or vena cava. Told small spot on lung but not sure if this is cancer. Can you have mets if the tumour is contained in kidney? Should I be asking for a pathology report ?
you can have mets even in a contained tumot. COnsult an oncologist and insist on scnas; monitor on a regular basis.
Siobain Donegal Ireland

Ireland

#6 Aug 15, 2006
Thanks Kathleen, seeing oncologist mid Sept don't know why it's being left so long. Hope your husband is responding to his treatment. The waiting at the mimute is the worst part. Hopefully we'll get a treatment plan and take it from there.
Kathleen

Braintree, MA

#7 Aug 19, 2006
My husband is responding to treatment; his cancer is contained. We scan again at the end of September. Waiting is so hard. Be politely aggressive though---call the oncologist's office on a regular basis and ask for cancellations that you might fill. We were able to speed things up a bit that way.
Siobain Donegal Ireland

Ireland

#8 Aug 20, 2006
Thanks Kathleen for your responses. I feel very hopeful now that I know your husband is doing well. Just being in touch with someone else going through this awful experience is a help. My husband has come through the nephrectomy really well and looks and feels well. I will be happier though once we see the oncologist and know what we are dealing with. My husband is re scanned on the 13th of Sept and then we see the oncologist and the urologist on the 14th so have 3 appts together which might be hard to speed up but I'll try for a cancellation and see what they say.
Tom Lavelle

Cleveland, OH

#9 Sep 14, 2006
Siobain Donegal Ireland wrote:
My husband diagnosed 19/06/06 with Renal Cell Carcinoma. Had nephrectomy in St James Hospital Dublin on 03/07/06. Haven't been told what stage and go back for scans mid Sept. We know it was approx 6cm and hadn't spread to surrounding tissue or vena cava. Told small spot on lung but not sure if this is cancer. Can you have mets if the tumour is contained in kidney? Should I be asking for a pathology report ?
I had an extremely large chromophobe tumor removed from my left kidney, 13cm tumor with 11cm satellite, on July 1st 2005. Doctors also found a spot on my lung, suspicious lymph nodes in my chest, and a large mass behind my aorta. All of them turned out to be nothing. I am still clean 14 months later.
TopalianFamily

Braintree, MA

#10 Nov 1, 2006
It may well be nothing---but absolutely get that report! Information is power---we all need to manage this beast!
Michelle Smiley

Mount Liberty, OH

#11 Apr 12, 2007
My left Kidney was removed 3 weeks ago. The tumor was 15 centimeters but confined to the kidney- lymp not affected. I was told I had the most common- clear cell. The second check on the path came back yesterday and now they say it was Chromophobe which is only 4% of the population. I am trying to find good info. I have been in a tailspin since yesterday. Can any one help?
Michelle Smiley

Mount Liberty, OH

#12 Apr 12, 2007
Tom Lavelle wrote:
<quoted text>
I had an extremely large chromophobe tumor removed from my left kidney, 13cm tumor with 11cm satellite, on July 1st 2005. Doctors also found a spot on my lung, suspicious lymph nodes in my chest, and a large mass behind my aorta. All of them turned out to be nothing. I am still clean 14 months later.
Tom- I read you comment. That at least helps calm me. I am glad that you are clean after almost two years. With my initial prognosis (Clear cell) they said there was a 25% chance that it could come back with in two years. Do you by any chance know what the % is with chromophobe. Some of the sights I have been on say that there just isn't enough information. I am not going to live my life according to %, but I think in order for me to know how to approach the oncologist and possible studies I need to know. Have you taken part in any clinicals or had any special treatments?
Singis

Eser, Turkey

#13 Jun 4, 2007
I had a left radical nephrectomy on May 2004. The tumor was 13 cm but confined to the kidney. There were no signs of metastasis. It was classified as Stage 2, Chromophobe. After 3 years, I am still alive with no evidence of disease. In the mean time, I had my first child; a boy 10 months old now. I am so thankful that I was able to live to see my child. Chromophobe is not as agressive as Clear Cell; so 5 year survival rates are much better than Clear Cell. However, my understanding is that due to its slow growth, you can expect metastasis as late as 15 years from the nephrectome. I hope it won't hit any of us...
Tom Lavelle

Port Clinton, OH

#14 Jun 10, 2007
Michelle,
I have all sorts of info on chromophobe. Please contact me directly.
[email protected]
Michelle Smiley wrote:
<quoted text>
Tom- I read you comment. That at least helps calm me. I am glad that you are clean after almost two years. With my initial prognosis (Clear cell) they said there was a 25% chance that it could come back with in two years. Do you by any chance know what the % is with chromophobe. Some of the sights I have been on say that there just isn't enough information. I am not going to live my life according to %, but I think in order for me to know how to approach the oncologist and possible studies I need to know. Have you taken part in any clinicals or had any special treatments?
Tom Lavelle

Port Clinton, OH

#15 Jun 10, 2007
Tom Lavelle wrote:
<quoted text>
I had an extremely large chromophobe tumor removed from my left kidney, 13cm tumor with 11cm satellite, on July 1st 2005. Doctors also found a spot on my lung, suspicious lymph nodes in my chest, and a large mass behind my aorta. All of them turned out to be nothing. I am still clean 14 months later.
xcxzcx
Lisa

UK

#16 Jun 20, 2007
My friend had cervical cancer 2 years ago, had a hysterectomy and her lymph glands removed, she has been through so much now she has been told she has fluid on both lungs and heart, and her lung is showing 2 suspicious cells, also she has just been told she has cancer in her middle back, its not new cancer.

Please help me, I am so scared for her.
What are her chances?
Katheen

Blackrock, Ireland

#17 Jul 20, 2007
how is your husband doing?Iam now 18months post op and doing ok at the moment
terry

Charlottesville, VA

#18 Jul 27, 2007
[ please help me with info on chromophobe cancer. my brother just had his kidney removed. the cancer is in 3 lymthnodes.please please tell me what to expect. thank you so much. hope you are well. terry
terry

Charlottesville, VA

#19 Jul 27, 2007
please please help me with knowing what to expect. my darling brother just had his kidney removed. now the cancer is in 3 lymthnodes. whats next??thank you and hope you are doing great!!
terry

Charlottesville, VA

#20 Jul 28, 2007
tom my brother just had his kidney removed now has cancer in 3 lymthnodes chromophobe cancer. please tell me where to find the best info and what to expect in the next few months. please. sorry not computer savy.

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