Rollrsk8ter's

Thanks for letting me share here. Maybe my experience will help others.

9/2007 blood in the urine got me to the doctor immediately. CT Scan showed I had tumor in left kidney. 10/3/2007 had left kidney and adrenal gland removed, RCC Clear Cell type Grade 3 confined to kidney, size of tumor 5.5 cm T1B NX MX

Followups with the Urologist every 3 months for the 1st year, Chest X-ray, blood and urine work. Checkups were now going to be every 4 months for the next year. In preparation for 1st 4 month checkup, I went in March 2009 for a chest X-ray and they found a 2.5 cm tumor in my left lung. Urologist ordered CT scan, Bone Scan which showed it isolated to the lung. Referred to lung surgeon.

Lung surgeon ordered a biopsy which proved it was RCC. 4/9 had the lung tumor removed with a little of the surrounding area, pathology report verified again it was RCC and since it had showed up in another organ it was then classified as metastatic RCC.

My Urologist had recommended that once I had the lung tumor removed he wanted me to return to him for followups. Wanted to start back to square 1 going every 3 months for chest X-ray, blood work, urine work.

Reading about Metastatic RCC on the internet, I decided it was time to see a oncologist, I could afford the copay to find out if I should just do what the urologist recommended for followup, after all this is my life we are talking about. I spoke with the Lung surgeon and he agreed I should see a oncologist he referred me to oncologist that he knew and trusted.

The oncologist (NC Cancer Center) went and got all my pathology, scan reports. She ordered a PET scan and MRI. She explained I am probably going to have a shorter life because of RCC. She explained that it went from my kidney to my lung in my blood and that means it is still in my blood. She was concerned on the quickness (<18 months) that is metastatised. She presented my case to a council of oncologists and it was 100% unanimous I should go on Sutent.

So I did end up writing a personal/confidential constructive critism letter to the Urologist for not recommending me to see a oncologist, if not on the 1st tumor, when it metastatised. I hope if he has any future/current cases similar to mine, he will consider my recommendation.

I took a baseline MUGA heart scan and started 25mg Sutent a day 2 weeks ago. I have 2 more weeks then 2 week break before going on 50 mg. I was told I will be on the 4 week on, 2 week off for the foreseeable future.

God bless all of you, you will all be in my prayers.....Jim

Hello Jim:

That's quite a story. You were right in seeking the advise of an Oncologist. To my understanding, there are two views on whether to use Sutent (or the other targeted drugs) in the adjunct setting. I beleive there is a clinical trial going on right now to answer that question.

Some Oncologists, from what I understand, prefer to wait and and use these drugs in reserve if there is no measurable evidence of disease.

Other Oncologists, from what I understand, may put someone on these targeted treatments as a precaution to prevent reoccurance.

I am unqualified to give medical advise so your Oncologist is your best bet to decide what is right for you. I am, however, curious to find out the results of the adjunct trial.

God bless, wish you the best.

Krys

Hi Jim,

I just wanted to send along all my good wishes for you and tell you that I will be praying for you.  It sounds like, although this is metastatic RCC, it was still caught a lot earlier than some folks.  So many people have no symptoms, and by the time they find out about the cancer it's spread so far that there's not a lot you can do about it.  My husband, for instance, found out he had a tumor mass the size of a football on his left kidney and left adrenal gland.  If that weren't enough, we found out the cancer had spread to both lungs.  There were between 30 and 40 different tumors in the lungs.  It had also spread to the lymph nodes in the chest, some of which were quite large and that is what caused his only symptom...a horrible cough (that's why we went to the doctor in the first place).  Then, a few months later, we found out it had also metastasized to his brain.  Torisel worked well for 8 months and saved his life.  It stopped working 6 weeks ago, and now Dave is on Sutent 50 mg.  His CT scan yesterday showed the Sutent is working well so far!  Many of the tumors have shrunk, and there is no new growth.   

I am glad your cancer was discovered while you only have one lung metastasis and not 40 of them!  The Sutent will hopefully work well for you.  We just have to take one day at a time and keep the faith.  Hang in there, Jim!!

Nancy

Sorry to hear you have mets from your RCC!  I had a radical nephrectomy in January of 2008, so this makes me a little nervous when I read the 18 month timetable of your recurrence.  Anyway, I hope you are going to do well on Sutent.  My oncologist says there is no chemo for me and I have had CT and blood work every 6 months from surgery until now.  I am waiting for COBRA to come through for me so I can go to the doctor (had to skip it on 5/19 because no insurance) but hopeful it will come through soon. 

 I have read these posts quite a bit and there seems to be several alternatives for mets and chemo by way of different medications, so keep the faith and best wishes to you.