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Enlarged neck nodes

LMCRJB13's picture
LMCRJB13
Posts: 81
Joined: Oct 2017

Have had enlarged lymph nodes on the left side of my neck for several weeks.  Consistent dull ache at most times also a tight feeling that radiates from below my ear down to my collarbone.

I’ve been waiting to see if the swelling would go down.  It has not, ugh.  Has anyone experienced something similar?

Have reached out to my RCC doc/urologic oncologist and am awaiting an appointment now.  Hoping that this is some kind of an infection and not mets.

My RCC was stage one, grade two but bilateral with a mass on each kidney.  I have never had a PET scan but I think it's time.  Nerves are getting the best of me.

Best to all.

Ryan 

Bryn1108's picture
Bryn1108
Posts: 73
Joined: Jul 2017

Hoping all will disappear 

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

I know it's scary try not to stress yourself to much I know that's easier said than done. I hope all is good sending healing thoughts. 

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

Hi Ryan,

Your situation is exceptionally unique. Is your RCC doc a medical oncologist that treats exclusively kidney cancer patients? In your particular case, I think it's incredibly important that you have someone that really understands kidney cancer (various types) which is actually multiple diseases and not one disease. I just heard Dr. Figlin (one of the researchers that developed Votrient and a leader in kidney cancer research) speak yesterday at Cedars Sinai in Los Angeles. One of his remarks was that what we are learning more and more is that RCC is not one disease but multiple diseases and it's very important that the treatment be tailored to the exact type of RCC someone has and not treat them the same as everyone else. Given how unique your situation is (presenting with two different types of RCC at the same time in different kidneys), that what he said would be particularly relevant.

When were your last scans? I assume you aren't on any treatment right now. Did they do a baseline nuclear bone scan and brain MRI after your surgeries just to make sure you're completely disease free? Did you get a CT scan with contrast of chest/abdomen/pelvis after your last surgery as a baseline? I ask because I had all of these after each time I had RCC. It was required for me to be eligible for any trials. My thoughts is that I want the same tests done that the researchers want done to make sure I'm disease free each time they find something.

Hopefully something else is going on and this will clear up. Swollen lymph nodes can be caused by lots of things. After my nephrectomy, I had all kinds of weird symptoms for months. Swollen lymph nodes was among them. They were in my armpit though, but I did have them investigated. I also had a swollen lymph node in my chest somewhere that they investigated by sending me to a pulmonologist. It turned out to be just a measurement anomaly.

Just telling you this last part to let you know there's a great chance it will clear up. Of course get them to look into it. I hope it's nothing and it clears up soon.

Best,

Todd

LMCRJB13's picture
LMCRJB13
Posts: 81
Joined: Oct 2017

Todd, thank you - your comments are incredibly helpful and very insightful.  

I have had no treatment since my second partial neph in January 2018.  Both my urologic oncologist and cancer geneticist agreed that with the size, stage and grade of the tumors no follow-up scans were necessary until 6 months out...that will be in early August.  I have not seen a medical oncologist at this point.  My doc is the leading kidney cancer doc in the area and a top researcher in the field.  Other docs around here refer to his office as NCI/NIH North due to his expertise and training at NCI.  He does treat other urologic cancers but RCC is his focus. 

I had a chest/abdomen/pelvis CT prior to the second surgery that was NED but nothing since.  I've often wondered if a baseline PET, bone scan and brain MRI should be included in my plan of care...especially after reading posts here.  I will bring that up with my doc for sure.

The hardest part is that my brain thinks that every ache, twitch or symptom is a met…still working to get over that. 

I'll provide an update as soon as I can.

Best,

Ryan  

Allochka's picture
Allochka
Posts: 826
Joined: Nov 2014

Hello,

you'd better check those nodes and pain out with ENT. I'm not saying it because I think that these are mets, no. I'm saying it because ear and throat infections (looks like one to me) could be really painful and debilitating (especially ear ones)

And swollen lymphnodes can take a long time to go down. One of mine in neck has stayed swollen forever.

Please check it out with ENT and mention to oncologist of course.

Good luck,

Alla

Optimisticgirl's picture
Optimisticgirl
Posts: 80
Joined: Aug 2017

can cause these to swell. Try not to stress over it too much. Quite common in people without cancer.  Best of luck to you. 

 

 

AnnissaP's picture
AnnissaP
Posts: 609
Joined: Sep 2017

Yes, it can be so many things. Gotta love how "cancer" always comes to our minds. I think it is a natural reaction even though we were told there is a huge chance it will never come back. I hope you are feeling better soon.

sandy23
Posts: 135
Joined: Jan 2017

Hi Ryan,

My husband had something very similar recently, here is a link to that post 

https://csn.cancer.org/node/316628

He had the neck pain and enlarged lymph nodes for about a month when his last scans were done and they were NED.  At that time, his specialist said that RCC usually shows up in the lymph nodes in the clavicle area first if it is spreading upward.  Of course, there are exceptions to every rule but from the research that I have done, it is quite rare to spread to the neck lymph nodes without being in other ones first.  His pain also radiated down his neck like yours does.

He didn't go to the family doctor until last week, so it was a few months later, and he ended up having a nasty infection.  Do you have seasonal allergies?  Tooth problems?  Congestion?  Acne?  It is so much more likely something like that rather than mets.  Of course, I was sure it was the worst and was a nervous wreck!!

Please let us know what you find out at your appointment.

Take care,
Sandy

sandy23
Posts: 135
Joined: Jan 2017

Also, I forgot to mention that if you are constantly "checking" them to see if they are getting smaller, you are actually making them larger.  I have health anxiety and have gone through a phase where I was endlessly feeling my lymph nodes.  I found out that every time you touch a lymph node, you will gradually enlarge them.  They don't like to be touched.  I know it's hard because you want to be sure they aren't getting bigger or, maybe, they are getting smaller and you can feel better.

LMCRJB13's picture
LMCRJB13
Posts: 81
Joined: Oct 2017

Sandy, I do remember reading your post about nodes.  Thank you for taking the time to respond...your info is super helpful - and calming :)

I'll post an update when I have one.  Until then, I'll keep on keeping on!

Ryan

LMCRJB13's picture
LMCRJB13
Posts: 81
Joined: Oct 2017

My RCC doc is sending me to see the chief of otolaryngology/head and neck oncology at Upstate to see what might be going on.  That's a relief Laughing

Fingers crossed that it's some kind of an infection and not mets.  Doc says not to worry...but have had some random pain in my hips too, ugh.  

Hopefully an update soon.  As always, thanks to you all.

Ryan

stub1969's picture
stub1969
Posts: 732
Joined: Jul 2016

Ryan--is your appointment scheduled?  Sounds like you are in good hands.  Sending good thoughts your way!

Stub

Wehavenotimeatall
Posts: 464
Joined: Aug 2017

Glad you are getting it properly checked out 

you have had two surgery’s so  your body might just be settling down

bUtd I know you are super worried.. but hang tight...

Prayers

Annie

MFoster
Posts: 17
Joined: Sep 2017

Yes, yes, yes. I have my kidney removed last June due to 8.5 cm tumor which was stage 3 RCC. Swollen lymphnode in neck is what sent me to doc originally. The lymphnode is back on left side near jawbone and it kills me. I've had a few CT scans on it. It is enlarged. It is not showing cancer. It is now causing headaches and stiff neck. I see oncologist again July 6 for that lymphnode. Please let me know what you find out. 

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