hello IPF777777

I am only in the very early stages of potential diagnosis myself so am not really experienced to give you much detailed information. All I can really tell you is to read through some of these posts on this forum becuase you will find many member's stories of their experience with this disease. I do know that there are different stages and gradings of cancer and so survival rates are different depending on this detail, which I'm sure she will be given during her next consultation. Did you mean that she only has kidney or only 1 has been affected. Again the treatment would depend on the staging and would depend on whether she had or kidneys also.

Can I ask though how were they able to diagnose this?

I have been advised that I am suspicious for renal cell carcinoma but until my kidneys are removed on 2nd November they will not be able to confirm - (I have an underlying kidney disase with hardly any kidney function left so removal of my kidneys is not a drastic measure for me)

Thanks

Julie x

Since I just found out and it is my sister that has it all I can tell you is what I was told. My sister (a nurse of 30 years) passed a blood clot in her urine. She went to the urologist and was diagnosed.

It may be then that they can test whatever she passed. I am really sorry- I know this must be extremely worrying for you both. I have been worried sick myself but as yet I do not have a definite diagnosis so I am forever hopeful that what they seen on my scans is not what they suspect. I hope they have caught your sister's cancer in its early stages so that perhaps a little surgery can eradicate it altogether. I am praying for her and hope you can be strong together to get through this. Please keep us posted on how she progresses.

Julie x

Here are my recommendations having just done this w my 20 year old. First find out what it is and if there are mets. If there are mets where. Then make sure u consider a partial nephrectomy not a full if thats and option always. If it is local there is a really good prognosis that she will not have the issues if there are mets. Also listen carefully to the treatment options. Rad and chemo are not very effective on RCC. Then you have to decide if there are mets if the antiogenisis drugs are the best solution. Lung mets are less critical then bone or liver. Do your homework find the right doctor and get a second option. Its critical. I dont know your location but I would be happy to share experience if in the NJ NY area. TAKE NOTES ASK QUESTIONS do your homework. You are your own advocate.

Hey, I'm an RN of 30 years as well. Not a lot of information for anyone here to make recommendations on. Tell her to get copies of all the films and all the reports, keep a file on all her information. You are at the right place and she should get here too. Lots of good support and information here. Sending good thoughts and gentle hugs, Connie

JP, Try to keep positive thoughts. You will find lots of support and ideas here. The people are very friendly. I had my kidney out in May and now have to wait until Nov. for scans to see if it has mets. You will find that you will have a lot of waiting for test results. Lots of people here to help you through. Prayers for your sister and your family.

Jean

Well the results came in and the cancer is isolated and operable!
: )

Thanks for all of you comments, prayers and concerns.

JP & Sis

I have had many delays for treatment. Be your own advocate! Get more than one opinion! Two Urologists wanted to remove my only remaining kidney, and go with dialysis...they are urologists, not oncologists. I had an opportunity to go to M.D. Anderson in Houston, TX...so blessed! All doctors who looked at my case, films, etc. said it was an 80% chance that the tumor had metastised, (spot near my spine, turned out neg, but they still think it is the cancer). Had I let them remove the other kidney, I would be on chemo or a target med like Voitrent, and dialysis too. Dr. at MDA said NO WAY...he was the one, and is still the one directing an Oncologist in my state, for my treatmentd. I've been on Votrient for two weeks now...yes it took from Feb. 22, 2011 to the 15th of September to get treatment started. I am sure all will be well now, won't cure it, but it will sure slow it down.
If I had requested copies of ultrasound done in Feb. 2011, my treatment would have been started at least 4 mos. earlier! It showed something in the only remaining kidney and I was told nothing there...so after two cystascopes, etc. finally got them to do a CT, found a mass, no info to give me, except I don't know...finally 2 more weeks and a demand from my Primary doctor, got a biopsy, which was also read incorrectly. Radiologist said the tumor was about 3.5 cm...it turned out two weeks later the tumor was 8x6x3.5 cm and growing.. So, keep track, get copies of all films, plus hardcopy reports, and more than two opinions if necessary! I read a lot of neg sideeffects on these pills, so far I am doing great.

Am so happy for your sister. Prayers certainly do help. 5 yrs. ago I had a full right nephrectomy (removal) of my right kidney in conjunction with open heart surgery because the tumor went up a blood vessel and into my heart.At the same time they saw a spot on my left kidney but opted not to do anything at that time. (wisely so). After several months I went back and had a partial neprectomy on my left kidney. I have not had chemo or radiation though CTs every six months has always been part of the treatment. It was just this past July that we noticed something and I am being retested next week. Can't take contrasts for MRI or CTs so we have waited to see if there's any change. My kidney is functioning well. I do take a small dose of furosimide (lasix) each day. I'm hoping there's no change and that there is nothing to worry about.Kidneys are also know for benign cysts. We shall see. Tell your sister to take it one day at a time. Any questions she has she should write down and have ready for the doctor each time she sees him. Don't let the health web sites scare her. Sometimes too much information which doesn't even apply to you specifically can cause you to stress which is not good for a cancer patient. I agree with the others here to have her join our support group. It's good to know that we as individuals are not alone with our illnesses. More prayers on the way for her surgery. Be sure to let us know how she's doing until she is well enough to participate herself.