Starting my battle with Stage 4 RCC and need info please

Vegas Tommy

My name is Tommy and I Have Stage 4 RCC that has spread to the lymphnodes. I am here to ask for advice on what meds should be prescribed as I am being treated by the VA and I am not too confident.

Back in Jan. 2020 they noticed I had a 2cm mass/ cyst in my right kidney and they wanted to monitor it and check on it in 9 months. Well in June I started pissing blood clots....alot! I went to the hospital and they did testing,

CT scan, Pet scan, ect..... They said my kidney was non functioning and I had a 6 cm mass with enlarged lymphnodes. The surgeon wants to remove the kidney but they want to put me on chemo prior to the surgery to shrink and kill

any residuals that may be in my body. I do a MRI tomorrow and meet with Oncologist on Wed. 

I just don't understand how a 55 year old can go from a cyst to stage 4 in under 6 months! Did they drop the ball? Just doesnt seem right.

They want to hit me with chemo very aggressively and then pull the kidney out as they Doctor said it still has some function and it will help with the chemo. The doc said I have a 20% shot at 5 years survival but I think 

I should fly by 5 years. What is this Keytruda-Inlyta medication...looks like some of you are having success with this! Some of you have the best doctors out there...what should I be asking? Thanks for sharing.

a_oaklee

welcome to CSN

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.

eug91

welcome Tommy-

Sorry you had to join us, but this is a great forum here. We know what you're going through, so we're here for you if you have questions or need to vent.

As for your situation-

What you're describing is unusual, but not impossible. I'm not a doctor, but it's not unheard of a tumor growing quickly, but maybe they missed something in January? Hopefully your MRI should give you a better idea of what you have and if/where it's spread. 

My first suggestion for you - when you talk to your oncologist next, write down notes. Bring your smartphone or pen/paper and jot down whatever info he/she gives you. You're getting a lot of important information thrown at you quickly by your doctors, and it's completely normal to be overwhelmed and get some bits mixed up, so write things down. It also helps if you have questions, write them down so you can remember to ask your doctor when you see them. 

For example, you mentioned treatment to shrink the tumor before surgery, but surgery is usually the first treatment for kidney cancer unless there are other factors involved. So you might want to clarify with your doctor about why they feel it important to shrink the tumor. 

As for your 5 year surival-

Ignore all that info that you find via Dr. Google. That information gets out of date really quickly. Kidney cancer treatments have advanced really quickly in the past years - just know that you have plenty of good reason to be optimistic and hopeful that you'll blow past 5 years. 

As for keytruda/inlyta-

There have been several promising treatments for kidney cancer - targeted therapies (which target the cancer cells) and immunotherapy (which helps your own body fight the cancer cells). Most recently there've been successes with combinations of the two. Keytruda-Inlyta is one of those combos. If you haven't already, check out the page here about kidney cancer treatments- https://www.cancer.org/cancer/kidney-cancer/treating.html

And yes to everything a_oaklee wrote above. All great info. 

Hopefully you should have more info after your MRI. If you have questions, ask your doctor - and if you want further clarification, we're here for you.

Good luck. We're with you - you've got this! 

Vegas Tommy

I meet with Oncologist Wednesday

Thank you A_Oaklee and eug91 for the responses. Had my MRI yesterday and hopefully get more answers. Over the past 10 days or so they have been trying to determine the origings of the Cancer. They did the needle biopsy

and they want to make sure the cancer started there in the kidney and determine the type of cancer. I will keep you posted as I learn more tomorrow. Thanks!

Tommy

Biner

Sorry you had to join us

Sorry you had to join us

I have a cyst 2.8  cm in 2018 and everybody said don't worry but next scan after 1 year show tumor 4.5 cm compare rcc, again was told 1 stage exofistyc tumor but after surgery path show 3 stage pt3anxmx 

unfortunately, it can grow very quickly 

a_oaklee

needle biopsy?

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.

Vegas Tommy

Thanks for the advice and will know more tomorrow

Off to see the wonderful wizard tomorrow morning....AKA Oncologist.

Needle Biopsy was performed as they wanted to see what kind of cancer it was.

They performed while I was in a CT scan machine and was pretty painless. At this time the doc said it was 6 centimeters....10 days ago.

I believe at first they wanted to remove the kidney immediately as it showed up dark....lights out on the CT...not working/dead but the surgeon said it was still working a little and he said hes not messing around. He said this is an 

aggressive cancer and hes not going to waste any time trying to target specifics.....as like you said that all meds dont work on all patients. He doesnt want to loose time so he is going straight to the Chemo hard. He is leaving the

kidney in for the moment as he said it will help me handle the Chemo but the intent is to kll everything outside the kidneys and shrink the tumor. He said we should be pulling it out in November if my body responds to the meds like

he hopes. That is the plam of attack and we shall find out tomorrow. He told me all this prior to the last CT, Pet scan, MRi, and Biopsy........I also believe I was at 4CM then. Keeps you all posted. Thanks

a_oaklee

It sounds like your doctor

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

misterace

I don't have as much info as the others but

Just wanted to throw in my 2 cents and make sure that you are perhaps getting an opinion from a uro specializing in RCC and also maybe an Oncologist specializing in RCC. 

I know you are in Vegas, but maybe a virtual visit might not hurt. Dr. Shuch was is my Doctor at UCLA and only deals with Kidney Cancer. I've also heard that Dr. Pal at City of Hope in Duarte, CA is an onclogist specializing in RCC. 

I am only writing this because you mentioned in your original post that you are not too confident with the care you're getting at the VA. 

Sending prayers your way.

Ace

Vegas Tommy

Oncologist ..... Seems like a bad dream

. I went to go see my VA Oncologist. Specialist.........hardly. The Oncologist was a Nurse Practicioner. I felt like I was with a med pusher without answers. Any questions I had were responsed to with anger like I was an inconvenience.

I felt like there was no team all on the same page. I have a great Urologist, a great surgeon and I requested a new Oncologist immediately after my appointment. To make a long story short I was prescribed Sutent at 50 MG a day for 4

weeks I believe but now I have to wait as I changed Oncologists. Crazy system but at least I only loose a week as they scheduled me for Wednesday and I got the Top Oncologist. I am happy with that so I suspect he will subscribe Sutent

as well. If it shrinks the tumor that is in the right lower pole, I believe they will remove the kidney. If Sutent does not work they will try a different med I believe. Origionaly the surgeon believed it to be a lining tumor ???? but it is in a

tube or tubular type mass.....Does that make sense to anyone? Like I said...I gots no explenation. I do know the mass is 8.5cm  x 5cm.  I dont think it has spread much...maybe a little in the lymphnodes but like I said I got really no 

explanation of my situation and every questions  I asked was responded like I was an inconvienience or not my job...talk to your surgeon or Urologist. What a crock. Oh well, I guess Sutent is what I have coming my way. Cheers!

Tommy

a_oaklee

We dont have any experience

We dont have any experience with Sutent, but I have read enough here to know that lots of people take it for 2 weeks on and off for 1 week.  Of course, you should take it exactly as it is prescribed by your doctor.  There are folks who have taken it long term and tolerated it well.   I agree totally with you requesting another caregiver.  That nurse practitioner needs an attitude adjustment.  What happened to the inlyta keytruda plan?

eug91

Argh-

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!