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.
Ok. I have some questions. I had gone to the doctor once and had the news, the treatment, the future, and everything told to me. He was very nice, thorough, etc, but as everyone on here has said, it's alot to take in. So, I made a list of questions and talked with him again and got clarification. He said he thinks my tumor is most likly cancer. It is 3.5 X 2.9 cm. It has not spread anywhere. The treatment is take the kidney. He thinks it is most likely stage one. Slight chance of Stage 2. Still, the treatment would be the same. The only difference is the reocurrance rate. Stage 1, 1 to 2 %. Stage 2, 4 to 5 %. ( And they do CT scans longer, or more frequently.) Someone on here keeps telling me that the latest treatment from cancer centers is to take the lastest drugs to shrink the tumor first, wait 3 months, and then have the surgery. Has anyone else heard this?? My doctor told me there was no reason to see an oncoloigist at this point. I'm confussed. If the rate is 1 to 2 %, what is the purpose for the drugs? I keep restating to this person that my cancer is most likly stage one.
Also, how do they come up with a 1 to 2% rate when all this technology is so new? Who has even lived say 30 years past their initial diagnosis?
I am a VERY possitive person. I feel very blessed this was found when it was. I just want to be realistic. I want to do what is needed to check myself way in to the future if needed.
Thank you again for your help!
Dana
Also, how do they come up with a 1 to 2% rate when all this technology is so new? Who has even lived say 30 years past their initial diagnosis?
I am a VERY possitive person. I feel very blessed this was found when it was. I just want to be realistic. I want to do what is needed to check myself way in to the future if needed.
Thank you again for your help!
Dana
When my husband's tumor was discovered 2007, the only treatment recommended was a neprectomy. At the time, they believed it to be only inside in the kidney, with no further involvement. He had the nephrectomy, then started being monitored by an oncologist (which we did on our own, as we did not receive a referral). In 2009, on a routine follow- up CTscan, it appeared in both lungs. I'm not familiar with the drugs to shrink tumors...only the nephrectomy. Hopefully, someone will respond who can give you the information you need.
I wish you all the best.
Hugs, Ingrid
I just read your entry and I can only speak from my experience. I was diagnosed with Renal Cell in May 2011. Searched long and hard for a good urologist and feel very confident that I found a great one. His recommendation was a nephrectomy. Take the entire kidney. After learning the two options from him: laproscopic verses open incision, i went with the laproscopic. Before I agreed to the nephrectomy i called the Cancer Treatment Center of America and had an online consultation...they said they were confident that my doctor was doing exactly what they would do. Take the kidney while it was confined.
So...I had a nephrectomy on June 20, 2011. I am very thankful because it was still confined to the kidney. The pathology report showed that it was invasive and fast growing! I learned from the Cancer treatment center that there are not chemo drugs that have been successful against kidney cancer....i would NOT take drugs to shrink and then remove. I would do mine all over again.
NOw, of course, you have to do what you feel is right for you, but really be at peace within yourself and make your decision.
I have been through my first 6 month scan...i have no new cancer cells, however, i have a benign tumor on my adrenal gland.
I wish you well and I'm here if you want to talk further. My urologist believes that I would not be here for the next year had he not removed my kidney and i believe the pathology report proved him right.
Good luck and best wishes! Keep us posted.
Roni
God is giving me the peace I need. My husband is treating me normal, thank heavens. You people mean so much in this journey. I pray for y'all each day.
Blessings from Texas to all, Dana
Thnks for you reply. I see now what the benefit could be if you wanted or needed to save the kidney. My tumor is in a bad location for that, so I will proceed as scheduled.
Thank you Gail, and I continue to pray for your precious son's recovery, and for your strenth as a mom...
Blessings to you...Dana
post a question here as to a referral from other Daily Strength members who may know a doc in your area - I see you are in Texas, MD Anderson in Houston is a prime RCC hospital.
if the tumor is considered encapsulated I wonder if pre-surgery drugs are really the answer? a biopsy may be necessary - although biopsies have their plus and minus benefits. generally, a urologist does the initial diagnosis and surgery and a nephrologist or an oncologist may do the follow up tracking. if they "got it all" the protocol is to do CT scans with contrast anywhere from every 3-6 months for the first two years and then perhaps yearly after that.
you may want to try the below site which is managed by RCC patients and has an enormous searchable archive with discussions running to 100's of emails a day. you can post questions and get many responses and guidance from those with experience and knowledge. no sense re-inventing the wheel. others have been where we are now with years of similar challenges
http://www.acor.org/search.html?searchcrit=kidney&where=mlist
you will see a link "Kidney-Onc" which will take you to a subscriber page. the navigation of this site is sometimes funky so take it step by step.
this is an alternate way in:
KIDNEY-ONC@LISTSERV.ACOR.ORG
be well and good luck, Rich
i think how you and your surgeon have it scheduled now is a great choice, where the tumor is encapsulated in the kidney, your chances of reacurrance won't be much of a percentage.. Get the tumor out with taking the kidney and there will definately be no chance of tumor cell spillage to any part of your body to give the the cancerous tumor cells any chance to go anywhere else it could metastasize to.. This way here they are taking the whole kidney with the tumor inside it out and not fooling around with doing a partial to bother to save some of the kidney and the chances of it being somewhere else in the kidney, the chances are a little higher..
Good luck with your surgery and please keep us all informed here our love & prayers are with you..
Beccaanne
Thank you both for the exellent advice and help.
This is has been extremely helpful and supportive. I will let everyone know how things went.
Blessing from Texas, Dana