CancerCompass message board discussion started by Michelle805 on 1/24/2006 http://www.cancercompass.com/message-board/message/all,4221,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, I was told I had a renal mass and it could be w/ renal cancer on 6/27/05 by an ER doctor. The intern at the hospital made a "mistake" (thank goodness) and put in the CT for abdomen instead of Pelvis (I had pain on lower right side for weeks which mysteriously went away the next day after my ER visit, this of course had nothing to do with renal cancer) The first dr. I went to thought I and the ER doctor was crazy for thinking I had renal cancer. He said alot of ER doctors make t his assumption that mass is cancerous. He said you are a woman, your are in your thirties there is NO way you have cancer. It must be just a regular mass and won't be malignant. Well he was wrong and of course felt like a IDIOT. Oh and he gave me the diagnosis over the phone which of course was a shock since he first said I'm 100 % sure is not cancerous. What a bed-side manner?!! Needless to say I didn't keep him as my doctor. I know it's a rarity and it was a miracle that they found it and it was small and contained. I feel so blessed that it was caught early. However, my concern now is it coming back in other areas and not finding out until it's too late. My follow-up is next month which has been 6 months since my surgery. Is that normal? I have complete confidence in my dr. he is one of the best in the world. But I just assumed it would be every 3 months. Here are my questions: Has anyone who has had kidney cancer had their follow up six months after? Is there anyone out there that knows of someone in their thirites w/ kidney caner? Thanks and Best of Luck to you all! Michelle Michelle805 Tue, 24 Jan 2006 00:00:00 GMT I can certainly appreciate your experience with the diagnosis. My original visit with a kidney specialist from the mass on my kidney and stated "he could all but rule out cancer" and guess what---it came back as cancer. The important thing though is to stay focus on the task at hand. We met with one oncologist who knew very little knowledge about RCC and wanted to monitor me. My wife and I preferred to find a doctor who would treat my cancer as if they had it themselves. We were lucky to find that person at the University of Minnesota. We participated in a clinical trial for Sutent by Pfizer and have had fantastic results. The tumor on my liver has completely disappeared. Sutent was approved by the FDA in the last two weeks and should become commercially availble soon. You may want to ask your doctor about this option or Nexavar (competing drug to Sutent which is also approved by the FDA). Regarding your question on frequency---I would not sit back and wait. From my first surgery to where they removed one kidney (felt they got it all); to a re-occurence on my liver with more surgery; to another re-occurence on my liver the time span was about 8 months total. One of the reasons we feel we were so successful with Suten is becasue we moved quickly. Good luck and keep a positive outlook. Bunker Tue, 07 Feb 2006 00:00:00 GMT Bunker, thanks for your reply. I'm in the process of setting up blood work and getting an appt. for an MRI for my follow up appt. on Feb. 21st. Also, I forgot to add that my oncologist is one of the best in the business/renal/kidney cancer. He reassured me that it was so small and contained that I need not worry prior to 6 months. He even said if everything is fine at my follow up appt. the next follow up will be in a year. Michelle805 Tue, 07 Feb 2006 00:00:00 GMT My daughter is 25 years old and was diagnosed Feb. 15, 2006 with renal cancer which has spread to her bones (hip & spine) as well as her lungs and lymph system. She has had 2 interlukin-2 treatments and is taking Sutent before she goes in for a third interlukin-2 treatment. We would sure like to see if there is anyone out there that as been so young and had this cancer. What has been their experience with this very aggressive cancer? Mandm1234 Tue, 02 May 2006 00:00:00 GMT Hi, In answer to your 2 questions . . I had both papillary and clear cell tumors removed in Oct, 2005 (stage 1) - and my doc at Johns Hopkins had the first check 6 months after surgery. So a 6 month check up must be common. And no, I've not heard of anyone in their 30's getting kidney cancer. What a shock that must have been for you. (I'm in my 50's.) Do take care of yourself and I'll pray for you. Dennis Dennismd Tue, 25 Jul 2006 00:00:00 GMT I realize it has been awhile since you posted your message. My husband is 32yrs old and has metastic renal cell cancer. I would love to talk with you about our experience with treatments and exchange some ideas with you. Please respond to me 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 ---- Loving Wife Thu, 19 Oct 2006 00:00:00 GMT My daughter had 4 rounds of IL2 that idn't seem to work and has been on sutent for 3 months. At this time she seems to be doing very well. She had a CT scan Mon.and we are awaiting the results.We will met with the Dr.on Fri. to plan because we understand that sutent will not work forever and we need to have an idea of what to do-trails(stem cell transplant),more IL2 or just sutent.It's so diffcult to rally know what to do but her blood count is finally back to normal as well as she has had only a few side effects(mouth tenderness, foot & hand soreness,bowel problems).She has been back to work since July an all seems good for know. Mandm1234 Tue, 24 Oct 2006 00:00:00 GMT Hi, I happen to be reading some of the messages people wrote in, and your subject caught my eye, Because I am in my late 30's and the same EXACT experience happen to me, I had my surgery on 9/11/06, so I am still recovering, it was a miracle for me the way they dicovered it as well. Sherry Cross my Heart Fri, 03 Nov 2006 00:00:00 GMT My Father passed away on 1-06-06. Renal cell cancer. Last Tuesday I went Bow Hunting. Shot a nice Deer. Went to hang it up in my pole barn. Slipped and fell. Went to the ER. They did a ct scan and found a broken rib. Guess what else they found? A Mass on my left Kidney. Do you think it is cancer? Thanks bigdog2 Bigdog Tue, 14 Nov 2006 00:00:00 GMT Hi Sherry,I'm so sorry I have not responded till today. I lost track of this posting.I have been on an e-mail list serve which as provided much info. My daughter had a CT scan about a week ago and at first look- mets are still stable or geting smaller. Yet they are no longer measuring the kidney and they refer to it as a complex mass, which maybe the end of sutent working for her after 7 rounds.We sure wish it had been more.She goes in for an MRI next week and we maybe at the crossroads of what to do next. Kidney removal or what???????Sincerely Mary Mandm1234 Wed, 31 Jan 2007 00:00:00 GMT  On 1/24/2006 Michelle805 wrote:Hi, I was told I had a renal mass and it could be w/ renal cancer on 6/27/05 by an ER doctor. The intern at the hospital made a "mistake" (thank goodness) and put in the CT for abdomen instead of Pelvis (I had pain on lower right side for weeks which mysteriously went away the next day after my ER visit, this of course had nothing to do with renal cancer) The first dr. I went to thought I and the ER doctor was crazy for thinking I had renal cancer. He said alot of ER doctors make t his assumption that mass is cancerous. He said you are a woman, your are in your thirties there is NO way you have cancer. It must be just a regular mass and won't be malignant. Well he was wrong and of course felt like a IDIOT. Oh and he gave me the diagnosis over the phone which of course was a shock since he first said I'm 100 % sure is not cancerous. What a bed-side manner?!! Needless to say I didn't keep him as my doctor. I know it's a rarity and it was a miracle that they found it and it was small and contained. I feel so blessed that it was caught early. However, my concern now is it coming back in other areas and not finding out until it's too late. My follow-up is next month which has been 6 months since my surgery. Is that normal? I have complete confidence in my dr. he is one of the best in the world. But I just assumed it would be every 3 months. Here are my questions: Has anyone who has had kidney cancer had their follow up six months after? Is there anyone out there that knows of someone in their thirites w/ kidney caner? Thanks and Best of Luck to you all! Michelle I found your message by googling young people with RCC and your post was so long ago I guess you are the old wise one by now. I had the same sort of thing just happen to me, I started out having extreme hematuria and after six months and six doctors telling me I was only 33 and never smoked and there was no way I have cancer someone decided to order a biopsy of the mass on my right kidney and next came my RCC diagnosis. So I am going to have a nephrectomy next week and I really just want someone who will shoot it to me straight. How are you doing now mentally and physically ? Also did people you know start treating you like some kind of leper for fear of not knowing what the hell to say to you? I hope you still are on this message board and will take the time to help me out  ! Thanks !  sickofpinkribbons Tue, 25 Sep 2007 00:00:00 GMT