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Probable metastasis to the mediastinal lymph node

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Hello everyone. I just received word tonight from my Pulmonologist that they suspect my RCC has metasticized  to the mediastinal lymph node. 

My surveillance CT last month showed nodes in the lungs and an enlarged mediastinal lymph node.  PET/CT Scan says that the lymph node is 2.2 cm x 3 cm and the lymph node exhibits metabolic signs of metastasis.  

I will have a needle biopsy if possible (lymph node sits next to Aortic arch) or they will do a scope biopsy.  

Can I just say, "Holy Crap".  I am devastated as my kidney was removed with clean margins just 10 months ago.  Anyone with similar experience who can tell me what happens from here?  I assume that this is now considered Stage IV cancer.

Thanks everyone.

Debbie

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Debbie,

I am so sorry to hear about this. It must feel very scary. I don't have the experience (or knowledge) to contribute.

But I just wanted to let you know that I am thinking about you and hoping for the best and smoothest treatment possible.

We are here for you!

Hugs

Jojo

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Thank you, JoJo.  

JoanneNH
Posts: 115
Joined: Sep 2013

Did you, by chance, have a CT scan of your chest prior to the surgery?  I wonder if it was there and they missed it.   

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Hi Debbie,

unfortunately, IF the nodules and lymph node are metastasis, this does mean you are now stage IV.  I know how tough  this news  is to take.  I remember well the day I got the news.  I don't know if you have already, but you definitely need an oncologist ASAP.   I strongly recommend that you find an RCC specialist.  Do not despair.  There are many treatment options.  I had a tumor in my aortic arch a few months ago, not as large as yours, but mine just disappeared, I assume because I am on treatment.  Based on my reading, the aortic arch is a tricky place for surgery so make sure that you get a surgeon with a lot of experience.

While this is a great forum with awesome people, I recommend that you also join Smartpatients.com.  Most members there are Stage IV patients and caregivers.  There is a wealth of experience and information there.

let me know if I can be of any help.

Kathy

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I was thinking about you, thanks for updating. 

We are here for you. 

It sounds like from what I've read here (and that is pretty much EVERYTHING HERE, LOL!) you will begin a treatment of targetted therapy or immunotherapy. 

I would ask about Keytruda and Opdivo the latest immunotherapies and if they can be made available to you for kidney cancer. 

Darron and Fox did amazing on immunotherapy when they were in clinical trials. 

Thinking of you as you move forward. 

Richgels1's picture
Richgels1
Posts: 26
Joined: Oct 2015

Hi Debbie,

Sorry to hear your news. I would wait till you get the results of the biopsy before you start calling it stage IV. It's possible that the node is inflammed from you past surgery. Prepare yourself for the bad news but continue to hope for the best. My RCC recurred in my surrounding lymph nodes also after having my kidney removed. They did a needle biopsy that returned positive. Doctors put me on Sutant which did a good job of reducing the size of the nodes and would have likely kept it under control for sometime. There are some side affects to the medication but you will be able to continue to live your life. My doctors did not want to do a second surgery to remove the enlarged nodes so I went for a second opinion at Mayo Clinic. I was still hoping for a cure. I did end up having surgery to remove a total of 17 nodes in the surrounding area of the kidney. Doctors assured me that even if it did return again, this surgery would ad years to my life. Everything went well for 6 months. I was even removed from medication. So, my point here is that if your biopsy comes back positive there is still hope. If your doctors don't want to operate a second time, this would be a good time for a second opinion.

In my case I again have recurrence and am back on a med called Votrient. I'm dealing pretty well at 2 1/2 years now and my last CT showed no signs of cancer for now. I'm sending you good vibes that everything goes well. Let me know if I can offer any other advise. In the mean time, live well. Scott

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Richgels1 is right,

I edited my post.  I should have said, IF the nodules in the lungs and lymph node are positive, that it makes you stage IV.  I apologize.

Kathy

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Thank you my friends.  It eases my mind to hear positive stories.  It is going to be rough waiting for the biopsy results.  I am just an anxious mess right now.  Blood tests were done to test for inflammation in the body, however, they came back normal.  I am praying for a small miracle at this point.  I do not yet have an oncologist as my urologist has been doing my follow up scans and blood work and he referred me to the pulmonologist for this latest work up as he did not think this was metastasis.  At this point, based on the biopsy results, I will most likely be referred over to the oncologist. 

Thank you again.

Debbie

APny's picture
APny
Posts: 1905
Joined: Mar 2014

I am so sorry to hear this. Wishing you the very best and keeping you in my thoughts and prayers.

Allochka's picture
Allochka
Posts: 847
Joined: Nov 2014

These are very unpleasant news, sorry to hear them... But there are so many positive cases here, even if it turns out Stage 4. This stage is very far from death sentence these days. And of course, metastasis is not confirmed at all. 

Hugs to you, unknown is the worst. Once you know - it is much easier, you either sign with relief or fight and win.

a_oaklee
Posts: 417
Joined: Nov 2013

I'm sorry that you are having to deal with this now.  I agree with Kathy that you should join Smart Patients website where you will find more individuals with a Stage 4 diagnosis, and that have had a mediastinal lymph node issue.  It is also a wonderful site with caring, educated people who want to help....just like here.  Some people belong to both sites. 

I'm concerned that you are being treated by your urologist.  If I were you I would be seeing an oncologist, hopefullly a urological oncologist.  I find it interesting that your doctor has sent you to a pulmonologist before sending you to an oncologist.  An oncologist will look at things differently...more the whole picture.  The pulmonologist is looking at your lungs.  To me it's like tunnel vision on a specialists part.  I think it goes with the territory.  They want to do what they can to help you. 

I am hoping that your swollen mediastinal lymph node is nothing.  It's possible it's nothing, and you need to keep that in mind.  However, if it is possible that it could be a met from RCC I believe you need to consider all options with the help of an oncologist.  Maybe poking it with a needle is not necessary...maybe it is.  I don't know.  There may be a bunch of  options for treating it and I think they should all be explored with you....cryoablation, cyberknife, surgery, medications, or just observation.  I hope that you get as much information as possible prior to making decisions.  A large medical center has interventional radiologists that can zap the thing (maybe).

Get copies of your own reports. 

I do hope that it turns out to be nothing, and that is a distinct possibility. 

(My husband was diagnosed almost 4 years ago with Stage 4 clear cell with mets to one lymph node and bone.  When the kidney tumor was found, they did a CT/PET just to see what else might be lurking.  Most people are not given a CT/PET prior to their nephrectomy.   We also wanted to know the extent of what we were dealing with.  We were immediately referred to a urological oncologist to develop a treatment plan.)

Annie

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Debbie,

I agree with Annie when it comes to seeing an oncologist.  Urologists are experts at removing kidneys and tumors, not experts at kidney cancer although there are a few exceptions.  My urologist is a very respected director of non-invasive surgery at a large teaching hospital.  After he performed my nephrectomy, I asked for a referral to an oncologist.  He said I didn't need one becaue he got it all and I was cured.  He didn't even order a chest CT.  That should definitely be done for a 9cm, grade 4 tumor, especially when he even told me it was a very aggresive type.

You can depend on the urologist to recommend a partial or radical nephrectomy and do the surgery.  Regardless of what he may tell you, you should see an oncologist and let them tell you whether or not you need their services and whether any other tests need to be run or if any other specialists should be consulted.

Just my 2 cents.

Kathy

jason.2835's picture
jason.2835
Posts: 336
Joined: Nov 2014

Debbie,

What Kathy said.  Exactly.  Take her 2 cents to the bank.  Straight SURGEONS of any type are going to be a little egomaniacal; it's their nature and we want them to have confidence in their abilities.  When they do their job, they have the feeling that "you're cured, what do you need another doctor for?"  But they are not experts in the spread and long-term care of RCC patients.  Go through your primary doc if you have to, but get that referral for an RCC specialist in your area.  You should still stay positive.  The reason we have scans is so we can catch this stuff as early as possible.  Sounds like they did that.  

In a strange twist, Kathy, my surgeon at Jefferson in Philly is the director of robotic surgery there.

- Jay  

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Well, today, 2 years cancer free, we met with oncologist. Then we stopped in to say "HI" to our beloved surgeon. 

 

Oncologist: Mentioned he wanted us to move to 1 YEAR SCANS stating that it was a "grey area" as to 1 year or 6 months scans after 2 years of good scans for chromophobe. I disagree. 

Urolgoist: Hasn't seen patient in 2 YEARS!! We loved him so stopped in to say "Hi" and "Thank You." He still had our daughters artwork in his office and remembered BOTH OF US!!

He also reminded us that it woudl be important to do yearly scans until 5 year were up. We LOVE THIS DOCTOR beyond belief. The only reason we switched was because we were so scared of recurrence we wanted a good oncoligist. Well, today I wasn't entirely convinced. He agreed to approve a scan next April, but I"m not so sure what he meant by "grey area"

 

Isn't 18-36 months the prime time for recurrence? Yearly scans? I think NOT!!!!!!

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

Jason,

Here's what's really scary.  I asked my surgeon (director of minimally invasive surgery at major teaching hospital) if he could do it robotically and he said yes.  I asked "That means you would be sitting next to me at the robot, not over me, right?"  He says yes.  I said "I think I would feel better about you standing over me."  He said "Me too.  Besides, sometimes you can have trouble with the arms bumping into each other."  I don't know if my chin literaly hit the ground, but I was shocked.  OMG! He was actually about to do it robotically if I asked, but must not be very good at it and knows it.  Scary stuff.  Always ask lots of questions.

Kathy

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I love my Urologist and definitely trust his judgment.  Based on the staging of my original tumor, he was doing my scans at 3 months after surgery and every 6 months thereafter for 5 years.  My 3 month scan was clear.  This recent scan at 6 months showed the enlarged lymph node and nodules on my lungs.  He referred me to the Pulmonologist because, prior to my nephrectomy, I have had calcified lymph nodes and calcified nodules in my lungs and mediastinal area that have shown on scan and xray for years.  Some type of lung granulomas disease.  Based on that history, he wanted a full Pulmonary work up.  At this point, a biopsy is necessary to distinguish between metastasis and possible granulomas disease flare up which would cause a false positive in the PET/CT scan.  If it is indeed, metastasis, I will be referred over to an Oncologist for further treatment.  

mrou50
Posts: 389
Joined: Mar 2013

Wait for the biopsy but if it does come back positive there are great medications out there to combat with.  I have been stage IV for a little over a year now and I am on Votrient my last scan three months ago had me in NED and I am hoping it stays that way.  Be strong and there are lots of people praying for you including myself.

Mark

APny's picture
APny
Posts: 1905
Joined: Mar 2014

Reading about your history of granulomas and calcified nodules I have the feeling that’s exactly what is showing up on your scan. Keeping my fingers crossed and wishing you the best!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I've also got the medialstinal node enlarged and active for 4 years. But thats all that it does. It stays pretty much stable. Todays drugs and radiation do amazing things. If there is no pain, then there is no reason to even think about it. Get your scans, and take your treatments until it's time to try something else. There is so much that is available these days. With more to come.

My sense tells me that you will be around for a very long time. These days we are living with cancer. Not dieing from cancer.

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Thank you everyone for helping me through this waiting game.  It appears there are no interventional radiologists close to me and insurance is taking their time referring me out of the area.  I will be pushing hard on them tomorrow morning to get this biopsy done so I can move on to whatever is next .

 

Your words are encouraging and hearing everyone's stories gives me more hope that even if it is metastasis, I will be around a while longer.  I know it is giving some comfort to my husband as well.

I will keep you all updated.

 

donna_lee's picture
donna_lee
Posts: 884
Joined: Feb 2009

2006-had kidney, left lobe of liver, set of positive nodes, plus defective gall bladder remove.  Stage IV, T2N2M1 Fuhrman III-IV

2007-oops, enlarging node.  biopsy positive.  attached to duodenum and inferior vena cava.  successfully rmoved.

2008- oops, another. couldn't biopsy-PET showed it was positive for radioactive sugar solution uptake. behind bifurcation of aorta as it splits to go down each leg. sucessfully remove.

2015-still here.  CT at end of Sept. showed no changes.  still going from test to test each yaar.  Just returned from vaca in Mazatlan.  even  wore a bikini.

Have Hope

Hugs to all, Donna

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

I am glad to read of your longevity with this disease, Donna.  And thank you for the chuckle - this body, no matter what the outcome, will NEVER see a bikini, LOL. But the fact that you are still here today to wear one is awesome and your words very encouraging.  Kiss

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