Starting my battle with Stage 4 RCC and need info please

Hi Tommy.  Welcome to CSN.  Sorry you found yourself having to join our group.  I'm here for my husband.  Your situation is slightly similar to his initially.  I'm glad you started your own post.  It's really helpful.  I can share some thoughts and ideas with you.

First, I would always get copies of your own scans, even that first one that you had.  It sounds like you said it grew from 2 cm to 6 cm in about six months.  If I were you I would also want to know where are the involved lymph nodes.  Are they just the ones near the kidney?  If you read the stages, just having lymph node involvement near the kidney can be Stage 3.  But your doctors certainly know more than I do.  The thing is, it should be explained to you.

What you should be asking:  If they start you on treatment first, when will they remove the tumor?  Do you have to have shrinkage of the tumor in order to get it removed?  How much shrinkage?  Is "no growth" good enough?   Do they have to stop the meds to operate?  When can you resume taking the meds after surgery?  If you are really healthy, then whats the reason for waiting to remove a tumor?  It's better to do surgery when you are healthy.

For my husband and I we were absolutely shell-shocked and didn't even know what questions to ask.  As time went on and we learned more, we had alot of questions.  It would be really great if you could get your doctor's contact information for you to use if you have any questions later.  Also, bring someone with you to your appointments to help you remember what they said, or to think of other questions.  Two brains are better than one.

My husband was diagnosed as Stage 4 in January 2012.  His mets were in one lymph node near the kidney and in his bones.  We went to a very well known facility, and the doctor there wanted my husband to take drugs to try to shrink the tumor before they would operate.  It didn't make sense to us, but we put our faith in them.  Turns out that was not a good decision for us.  A year later we found a surgeon who was willing to remove my husbands kidney tumor.  The bone mets were treated with radiation.  My husband is really doing great.  He still works full time.  He has had clear scans since 2013.  Yahoo.  He has taken Inlyta since 2013.  That was the newest drug at the time.  Now they combine it with Keytruda.  So, I think that is a very good choice.  The first couple months of being on Inlyta was difficult, but then the side effects started to go away. 

I think in addition to being on CSN, you should also join SmartPatients. 

I hope your appointments with your doctors are good, and that you will feel like you can have faith in them.  Someone should gladly answer every question and concern you have at your appointment.

Needle biopsies are rare.  Since you had it done already, make sure you also get a copy of that pathology report.  I kindof wonder why your doctors wanted you to have that done.  Perhaps there is something questionable about what they see on your scans.....and perhaps it's not cancer???  My husbands cancer was diagnosed from the CT scan.  And the other sites were found with a CT-PET scan of his entire body.

I'm just going to put this out there:   We have found that my husbands "proposed" treatment plans have all been different with each doctor and facility that we went to.  We live in a small town and all they wanted to do was rip out his kidney.  "hey, you have 2, so whats the big deal"....is what we heard locally.  We know enough that surgery should spare as much kidney function as possible.  Local docs did not do "partials".  So, we ended up driving a couple hundred miles to a major medical center.  They were capable of doing a partial.  The presurgery work-up was good, like yours, and that's when we found out it was in a lymph node and his bones.  The thought at this medical center was that we will give you drugs until your tumor shrinks, and then we will remove the tumor.  Way back then they only had 7 different targeted therapies.  The first one didn't work...Votrient.  The second one did a so-so job...Affinitor.  After a year of this, and not feeling good, we went to another major medical center.  We had to meet with their "Tumor Board" for them to approve the nephrectomy.  Everyone knows that removing a tumor is better for survival.  Until you do, the darn thing is putting more cancer cells out into your body.  He got approved and had it removed.  This was a whole year later.  Meanwhile he had the bone mets zapped with radiation and that killed them.  We felt that the place that wanted him to take drugs and keep the tumor just dragged the whole thing out for an entire year.  When we finally demanded to have it out, they said "no".  We had to go somewhere else.    AND this is why I am recommending that you ask them specifically what they are waiting for, and what exactly do they need to see happen, before they will remove it.

Even if you have multiple sites, as some Stage 4 people have, each of those sites has a way of being treated.  You have choices.

If you have a chance to read Donna's history, please do.  It's inspirational in how her surgical approach to dealing with RCC has worked for her.

I will leave you with the thought, that every patient is different.  Health history, age, etc., are all factors that affect the plan.  It's also important to know that some medications work for some people and not for others.  There is no one-size-fits-all.  The great news is that there are more treatments being discovered all the time. 

Always best wishes to you.

It sounds like your doctor has explained the plan clearly to you.  Thats very important.  Keep in touch.  We will be thinking of you.

Sorry to hear about the awful experience, but thankful that you've already got an appointment for a new oncologist. It's your health and your life - you absolutely deserve answers and do not deserve attitude. 

As for the shrinkage, definitely ask your new oncologist about it. In most cases, surgery comes first to remove the tumor (and the affected lymph nodes), then treatment. It's not entirely unheard of to go with treatment first to shrink the tumor, but usually surgery comes first. There might be a good reason, but you should find out what it is. 

As for spread, your scans should have told you if you have any spread. If it spread, it often goes to the lymph nodes and the lungs first. Your scans should hopefully have revealed if your cancer has spread.

So when you meet with your new oncologist, definitely ask them-

1. Is there a specific reason your plan is to shrink the tumor with treatment first instead of starting with surgery?

2. Based on your scans, was there any other spread, other than the lymph nodes? 

Good luck, Tommy. You've got this!