38 yrs old 15cm renal mass with spread to lungs, adrenal, and lymph nodes

I'm new to this board and don't have a lot of knowledge to share but I am wishing you the best. I understand how your world has been turned upside down especially since you're so young. So far your scans have been great! Good for you! I hope you continue to find hope!

AMAYEU said:

Crazy, Darron! We have the

Crazy, Darron! We have the same tumor locations.  Its wonderful that the Nivolumab-Sutent trial worked for you.  I live in San Francisco and goto UCSF. 

Thanks for the support Jan and PonyWave

Update-  I got a call earlier this week from my uncologist and I have clear cell rcc based on the pathology.  There is ongoing dicussions between the oncologist and surgeon about surgery but they need the ok from the liver specialist due to proximity of the tumor to the liver.  Fast foward a coupled of days, I am to go on Sutent for a few months to shrink the kidney tumor before surgery. 

Has anyone seen posts of Sutent/treatment prior to sugery?  Been constantly searching on here and smart patients for some type of experience but coming up empty.  A link or opinions would be great!

Thanks Mike.

 

Mike:

 first of all, I am sorry that you are dealing with this at such a young age; my son is your age. my husband as stage 4 renal cancer and is being treated at UCSF. You are in excellent hands. I firmly believe that my husband is alive (and actually well) almost 3 years post diagnosis.

which doctors are treating you? My husband's surgeon was Max Meng and his oncologist is Chuck Ryan; his radiation oncologist is Jean Nakamura. They work as a team along with his gp and nephrologist.

i cannot answer your question about sutent 

AMAYEU said:

Hi Sarah,
Dr Won Kim is my

Hi Sarah,

Dr Won Kim is my oncologist and Dr Max Meng is my surgeon. Yes, we discussed immunotherapy and clinicals.  We also dicussed IL-2 offered at UC Davis and UCLA.  Good to know about Dr Fong as the researcher. 

Thank you for the support.

PS.  Staring at a bottle of sutent that was delivered to me. 

Mike 

 Max Meng is an incredible surgeon; he removed my husband's right kidney (10 cm) laproscopically  an hour and a half; loads of experience and a dark sense of humor.

todd121 said:

Welcome

Hi Mike,

I'm sorry you're here with this kind of a medical issue.

Until they have pathology (looking at cells under a microscope), they are guessing what it is. Urologic oncologists handle surgery on genitorurinary tumors, but they do not treat metastatic disease. If you have tumors in multiple places besides your kidney, you really should have a consult with a medical oncologist (I'm not a doctor). They may not recommend surgery right away. They are the ones that manage the care of metastatic disease. They are the ones that treat with drugs, or refer us out to surgeons (urologists, cardoliologists/pulmonologists, etc.) or radiation etc.

Personally, once the cancer has or may have spread outside the kidney, I'd want a medical oncologist involved. This is a fast changing field (there have been many new drugs and new surgical/radiation techniques), so someone very familiar with kidney cancer would be ideal. Do you live near a national cancer center or a university medical school? One way to find an RCC specialist is to go looking for studies in your area that are related to RCC (renal cell carcinoma) and find the contact number of the doctor who is coordinating the study in your area. These doctors usually have policies to see patients in situations like yours within a few days of being called. I called the weekend before Thanskgiving and managed to get an appointment set up on the Monday after. Just be sure to tell them of the seriousness of your situation when you call for the appointment.

Urologists cut stuff out. While the treatment for Stage 1/2/3 is nephrectomy, once the cancer has spread it's not so clear that that is the first thing to do. Hopefully your urologic oncologist is going to help you figure out/make sure what you have in all those places before they decide a course of action. Usually they do a CT of chest/abdomen/pelvis with contrast if possible for more information. They also quite often do a nuclear bone scan (to look for bone lesions) and an MRI/PET scan of the brain (to look for brain mets). It's important to know the full extent of what you are dealing with before starting a treatment. As I said, until they look at cells under miscroscope, they can't tell what kind of cancer it is. It's possible to have more than one kind (although this is rare).

My two cents.

Please let us know what they are recommending and what tests you are going through. It helps us all to learn about this and we want to hear how you are doing.

I know it has to be very stressful. I came in here with one medium size tumor 3 1/2 years ago in my right kidney. Kidney removed. Then a litte over a year ago had a new tumor show up in my right adrenal gland. Adrenal gland removed. So far no other tumors. I'm followed closely by a medical oncologist who sees many RCC patients a week. A typical medical oncologist will only see a few RCC patients a year. It's not a very common cancer.

There are several treatments available now. I think any talk of treatment before they've made sure what you have is premature. Until they remove a tumor/some cells through surgery or a biopsy, they don't know what you have. Without knowing what exactly it is, you can't really make any treatment decisions.

Wishing you the very best.

Todd

Hi Todd I my self had a partial done on right kidney on Sept 13 2012 .went for a ct scan in april and they found a stop on my right adrenal gland.Friday the 29th of April did the biopsy and am waiting to hear..Its funny how in both cases it was 3 1/2 years and it may have came back..Glad you are doing well and hoping for the best..

AMAYEU said:

Wow, Todd121 pretty much

Wow, Todd121 pretty much nailed it.  I had a very busy week... uncologist appointment, mri, ct scan of the chest, bone scan, and a meeting with urological surgeon.  And I still have a biopsy this coming Tuesday.   

I saw the uncologist on Tuesday.  He broke down the treatments into 3 categories. 1) Targeted, with Sutent or Votrient 2) Immunotherapy, with Opdivo 3) Clinical.  We also discussed IL-2.  He ordered all the scans to check the whole body for mets.  He explained the different types of RCC like clear cell, etc.  Treatment is now determined by the pathology report from the biopsy.  I felt the uncologist was leaning more toward treatment before surgery.

On the other hand and after talking with my urological surgeon, he felt removing the kidney tumor and other areas would be a good course of action.  This would be dependent on the pathology report and the opinion of a liver specialist because of the proximity to the liver.  We also discussed IL-2.  The case is on the tumor board so others are involved in the decisions. 

I signed up for smartpatients and there is alot of information, esp technical medical info on treatments.

Forgot to mention, chest and mri came back negative.  Waiting on bone scan. 

Mike

 

WHEN I WAS DIAGNOSED EXACTLY 3 years ago IL2 was the only hope of a cure. The onc. said my youth was on my side (I was 52) and it reduced the size of my tumours by half. You have to take it in the ICU tho' (make of that what you will).

Out of the others Opdiva has given me less side effects and has had the best results after IL2 which can be pretty rough in terms of side effects

How are you doing now? 

Thinking of you. 3 weeks after my rad neph clear cell left kid.

I made contact with a oncological social worker to provide support for me and family. 

Thankful for the modern medicine years ago options were limited.

Blessings

John

Hi James,

Welcome to our forum, it's good to meet you. Please tell us some more about yourself and your situation. How were you diagnosed? Is there a mass on your kidney? How big? Which kidney? Etc... It's best to start your own topic. 'Add new forum topic'.

If the docs are planning a partial nephrectomy then your tumour must be fairly small. That means you have a good chance of being free of cancer after the operation.

You've come to the right place. This is a very supportive group.  I think it would be hard to go through this alone. 

My right kidney was removed a few months ago.  It is scary but it does get better.  Life is 100% back to normal now.

Steve.

Mike, I am so sorry to hear of your recent health discovery.  I can only imagine you feel and how frustrating it can be to be with out proper health insurance.  I was initially told to have a 6-8cm tumor on the right kidney which warranted a nephrectomy.  Two months later surgery revealed a 11 cm tumor and simply because of the size of it it placed me at a Stage 3.  My Oncologist does not recommend any other treatments for now.  Even if it would have metastized into the lungs..often times people are just "observed" and many lung lessions disapear with time.  Let us know what  happens when you see the surgeon and oncologist!  Hang in there...you will be fine!!