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CT Scan Result show Enlarged Lymph Node

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I can't tell if uncle Ned was here or not. It's like I left out milk and cookies for him and got up the next morning and there were some bites taken out of them, but he's nowhere to be seen. Not sure if it was uncle Ned that was here or that damn Ed (evidence of disease).

My scan summary noted a mediastinal lymph node that had enlarged from 8x6mm to 11x8mm since my last scan 3 months ago. Anybody have experience with lymph glands just suddenly getting bigger but it not meaning anything with regards to it being a met?

My oncologist said that there's nothing to do unless the node reaches 15mm in size and then he'd biopsy it. Otherwise just wait and watch. I, of course, assume it means my cancer is back. He said lymph glands may become inflamed for other reasons like an infection (but I haven't had any). I tend to think they'd enlarge in clusters for something like that instead of just one...but then when did I go to medical school? Never.

Of course I've been researching lymph nodes and sizes and why they grow online. Probably not helpful.

On the up side, I attended a kidney cancer support group at Cedars Sinai last week and heard a talk from Dr. Figlin. He was excited we now have 11 drugs approved for kidney cancer. He was also saying that unfortunately we have 11 drugs approved for kidney cancer. Nobody knows which one to use when, how to combine them, or what order to give them in. That's the challenge going forward. He said because of this situation, it's even more important than ever to be seeing an RCC specialist to treat your disease. A regular oncologist will see a few kidney cancer cases a year. He saw 13 that day.

I'm find it a little difficult to decide who to share this information with. On the one hand I'd like some people close to me to know what's going on with me. On the other hand, some people really close to me have really bad anxiety and their own problems and I don't want to add to this burden.

One of my RCC buddies I met at a support group passed away on Monday. He's one of those people that gets sick and doesn't want to bother anybody so I didn't even know his cancer had returned. He's just dropped out of view for the past 6 months and stopped answering my calls, emails and texts. I had a feeling that he was sick, but what was I supposed to do? Hunt him down? He never really wanted to know much about his disease. When I asked the pathology and diagnosis, he said he didn't know. He just knew it was bad. He wasn't seeing an RCC specialist. When I suggested it, he said he knew he probably should but he didn't want to. He delayed scans for months. Etc. Once again, what was I supposed to do? I'm going to miss him. A lot. The funeral is on Tuesday. We've been supporting each other for 2 years now just by getting together for lunch or a movie. Very sad.

I hope this posts. I've been trying to post this for 2 days. I was just able to post a simple test post, but haven't been able to post anything else for a couple of days.

Hugs,

Todd

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

Wow, Todd, that's a lot to get all at once.  Not to mention the bad timing of the forum misbehaving in such an obnoxious way. 

You're right, there are all sorts of reasons for lymph nodes to grow. Lately, when I consume dairy products in general, the lymph nodes on the right side of my face and neck get enlarged.  If I eat cheese, they swell like crazy and hurt like the dickens.  Not even an infection.  Just a stupid grilled cheese sandwich. 

So sorry to hear about your friend's passing.  Even though we are grown-ups we don't always make the best -- or even the most sensible -- decisions about life.  And then sometimes life tippy-toes up behind us and really bites us in the butt, no matter what we do. 

When I watch a movie or go out to eat, I'll be thinking of you and your friend. 

Hugs back atcha,

Jerzy

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I'm so sorry for your loss.  Unfortunately, there wasn't a damned thing you could do but be a good support system for your friend, which I'm sure you were.  We all make our own choices on how to deal with what we've been dealt.  My youngest brother was diagnosed in late 2005 with lung cancer at age 45 and his choice was to do very little to try to change the outcome.  He passed early 2010.  Although I found it hard to accept his decisions, I finally decided it's an individual choice and I needed to respect his decision and try to be supportive.  I made peace with it and enjoyed my time with him as much as he would allow.  (he tended to pull away from most people)

As far as the lymph nodes, there are definitely reasons other than cancer for enlargement, but like you I'm concerned that it's only one.  (I'm not a doctor either though, so what do I know).  Did you happen to ask about that? 

In the meantime, I will continue the prayers and remain hopeful that this is just a sneakier version of NED. 

Donna~

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Todd

I'm so sorry for your loss, loosing a friend is hard but loosing a friend for RCC is devastating, I pray for you to get past this tough situation. All we need to do as patients is not losing hope and looking for best medical support.

And about the lympe node, when is your next C.T scan? I really hope it's nothing related to RCC, there are many unrelated reasons and let's hope the reason is one of them.

Forough

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

Scared the **** out of me, of course, knowing about cancer like I do. I felt it on the back of her kneck after she got roughed up during judo. 

Her doctor said sometimes it's just a signal that the lymph node is doing it's job, and you may never even have the infection "show up" because the lymph is doing what it is supposed to do. She also said it can be "left over swelling" from a recent infection, even a couple weeks ago. Sure enough, after about a week I was barely able to feel it as it had decreased in size. 

I will be hoping that this is the case for you, it sounds like your doc is cautiously optimisitc. 

APny's picture
APny
Posts: 1998
Joined: Mar 2014

 

So sorry about your friend. We all handle our illnesses and issues our own way and apparently he did it his way too. It can make us feel helpless but the only thing we can do is reach out and let them know we’re there if they need us. You did that, so there was not much else you could do besides respecting his need to handle it his way.

 

Hopefully the lymph node is enlarged for other reasons but the good thing is that it was noted and will be monitored. It’s hard to say whom you should share your anxieties with. I think I would talk to someone close to me but you know your friends and family best so I’m sure you’ll work it out. Give it a couple of days and then decide whether you want to share it or not and with whom.

 

Hugs, Andi

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Give it a couple of days and then decide whether you want to share it or not and with whom.

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Oh Todd, I am sorry for your loss. You are a great friend and he knows it. He handled his life as he wanted I guess.

But WE want you to be okay and hope this ole node thing is not a big deal...still...

Know I am always here for YOU!!

Sending you my love and a gentle hug,

Jan

Srashedb
Posts: 482
Joined: Dec 2013

Todd:

what has happened with my husband's cancer is that an are gets picked up on a scan but not mentioned; a subsequent scan may refer to it if there is any growth or change and we have been told that they just monitor until it is more conclusive. I drive myself crazy by researching each time he gets a scan or MRI but what I have noted is these areas were picked up in his initial Pet Scan before any treatment and now use that as a roadmap. 

he was stage 4 when diagnosed so we know that the cancer left his kidney and it is more a case of slow growth and hoping to defer any meds until we know more about how they work. Right now, NIVO is looking promising but what we don't know if it effective on its own or whether it works after another med.

so far, we have used radiation which has been very effective and currently are trying to figure out whether a small area on the remaining adrenal gland should be radiated or surgically removed. One radiation doc tells us that it will impact 10% of his kidney so we have a consult with a second doctor. The surgery would be a partial adrenalectomy and it may have an impact on the adrenal function. We are spoiled and are trying to avoid this. We are told that there is no urgency since it has not grown much since late February.

i think my point to you is that anxiety will not be helpful because you are being closely monitored and it will be dealt with; you have a slow, stage 4 cancer.

i am very sorry about your friend's passing and sorry that he chose not to share; he was probably trying to shield your group. As for your sharing with family, here is what we do. We share with a couple of family members when we first become concerned but wait until we know more before sharing with the rest. My sons have been very specific about wanting the information only if is definite. Much as I want their support early on, the truth is they are in their 30's raising their families and on some level, they get a pass. Life changes and they may have a turn at being where we are and I hope they never do but for now, I provide them with "updates" and answer their questions as best I can.

Sarah

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I really appreciate everyone's response and advice. I've taken it to heart. Been pretty successful letting go of this lymph node thing. More will be revealed. Practicing gratitude for as much as I can find it for and trying to stay in that place. Seems to be the healthiest place to be.

Hugs,

Todd

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Todd,

     I am so sorry for the loss of your friend, but remember we are always here night or day and for the most part we all know what you are going through! Please don't ever hesitate to talk here! The support here is really awesome!

                                 Love and prayers for good health!

                                  Brenda

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Thanks for the reminder Brenda. Support here is awesome. I wish I had more time to read and respond. Often times I don't respond because I just don't know and I don't want to give out bad information (or bad support even).

Wishing you the same!

Todd

donna_lee's picture
donna_lee
Posts: 1015
Joined: Feb 2009

Lymph nodes are not something to wait around for...  As you have read, mine had already Mets from kidney to the liver and set of nodes (2/11 positive on first surgery in 2006.)  I had CT's every 3 months and from late Feb. to May, a node under where the right kidney had been had enlarged enough that the Dr. ordered a fine needle biopsy.  It was positive for RCC and I had the node removed on 7/3/07.  Jump forward 1 year, and again, the difference between 2 tests showed another node enlarging.  They couldn't get to it for a biopsy, so I had a PET instead.  It lit up with the radioactive sugar solution, and I had it removed in late June 2008.

Don't let the Dr.'s hang on too long without further testing or removal. 

And sorry your friend passed away.  But we cannot control the outcome of someone else's illness.

donna_lee

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Hi Donna,

Do you remember how large the node(s) got before they ordered the needle biopsy and the PET scan? Did the pathology on the second node show RCC? It's hard to imagine they couldn't get to it to biopsy it, but they could remove it.

What's the deal with these lymph nodes? We don't need the damn things? They can just cut them out left and right without affecting our health?

The node is in a hard to reach place. It's in my chest  near my spine between my lungs and near the heart. Doc said he wouldn't biopsy unless it reaches 15mm. It's 11mm now (was 8mm). I will have another scan in 3 months. We will check it then. That should be ok, right? He seemed pretty sure that we shouldn't do anything right now except scan again in 3 months. I'm getting scans every 3 months now and will continue that for the foreseeable future.

Thanks,

Todd

JerzyGrrl's picture
JerzyGrrl
Posts: 761
Joined: Jun 2016

Todd, the location of that lymph node reminds me of a '67 Chevy Impala I used to have. It had one spark plug that was miserable to get to, so I waited until it was behaving to the point that it needed to be checked out.  Glad your doctor is keeping an eye on the node. 

Nodes get to filter the get-it-out-of-here stuff in the fluids that end up surrounding our cells, then dump the good stuff back into our blood. Their immune cells battle infection. They're handy little things, but we can live without them (OK, probably not without ALL of them, but a few here and there seem fairly cool to go). Crazy, huh? 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

They say, oh, you don't need the other one. Well, you don't need it right now, or, uhhh, very much. Or maybe they are just really poor at measuring the effects of having only one? We have two lungs, but I noticed they are pretty slow to remove one that has a tumor in it. My grandfather had 1 lung. He lived into his 80's that way. However, he had a few health issues along the way.

I suppose we can use a few less lymph nodes. Does removing them cause problems with the flow of lymphatic fluids throughout your body? If they are bad, I guess they have to go.

I feel fortunate to still have one kidney and one adrenal gland. I know a few people without any adrenal function. It's somewhat a pain. My aunt has Addisons (no adrenal function). It was fine for a long time, but then started being a real pain in recent years.

Hugs,

Todd

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

Wishing that your lymph enlargement turns up to be just an inflamation.  I think we have some that come and go.  I often get inflamed lymphs in my throat and my groin... is it the correct word?  I hope!  They last sometimes for a week or more and by now I think its the body sometimes fighting infections or viruses.  Let us know when you know more.  Be well.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

The words are all correct. I'm so glad to see you still here posting and reading. I love it that people with partials and early cancer stick around to read and post. Hope you are doing well!

By the way, how old are you three sons? I don't remember hearing you mention their ages.

Regards,

Todd

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

My sons are 42, 33 and 25. Their age is a little 'spread out" as they were "one kid per marriage" 1st son at eighteen,  I would have now made use of an icon,haha! I became a grandma recently and will be again at the end of Summer, 2 boys.  My dog is also male.  Not complaining but hoping for a girl in a near future.  My boys all called today to check on my check-up,  Im "feeling groovy"!  Big hug Todd

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I've read that your daughter-in-law should concentrate on eating foods rich in calcium and magnesium in the weeks before conception.

I also have 2 sons and was hoping for a daughter. Alas, I'm done. But I did get a very nice one for a daughter-in-law! And hoping for a granddaughter. Although I'd go for a grandson. My son is 33 and has been married 5 years. They don't seem to be even thinking about children. I'm wishing they would, but keeping those comments to myself.

So glad to hear your NED news.

Hugs back,

Todd

donna_lee's picture
donna_lee
Posts: 1015
Joined: Feb 2009

I'm not sure if I ever found out the size and/or the increase in size.  I'll have to check my records.  The first one-biopsied-was attached to the duodenum and the inverior vena cava.  Removed in a very delicate surgery at OHSU.  The second one was posterior to the bifurcation of the aorta (where it splits in the lower pelvis to go down each let).  There was no way to get a needle in there without making something spring a leak.

And grands are great.  My d-i-l has a raging sinus infection that makes her dizzy sometimes, so I volunteered to drive the girls to swimming lessons today. Twelve and almost ten.   My daughter and family will be down in three weeks for a short camping trip-boys-a jr. in HS and a jr. in college.

Let's have more NED reports from more people.

donna_lee

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

these scarey things turn out allright for you in the long run. Think that way. You'll be fine.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I've been pretty good about letting it go now. Thanks Fox.

Sometimes I want to know what's going on. Sometimes I'd rather not know (especially if it's stuff I can't do anything about). I guess I'd rather they tell me.

Todd

Airie
Posts: 45
Joined: Mar 2016

Todd-

Grieve for your buddy. It was a loss but don't dwell on what you should have done. it was his journey. Continue to take care of you! Keep us updated. 

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

I went to the funeral yesterday. I found he'd been on dialysis for the past 6 months. I remember he'd told me his creatinine was climbing a year ago. I asked why and he said the docs didn't know. He may have been hiding it from me.

He was very supportive when I had my last surgery. He was calling me and he came and gave me a ride when I couldn't drive. From what was said at the funeral he was just a really great guy. He was only 42. I believe he had a more rare type of RCC and it was very agressive. He might've already been Stage 4 when he had his nephrectomy 3 years ago.

I totally accept how he handled things. But I would've liked to have known, but it was his decision.

Thanks for the feedback.

Todd

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Your friend was so young.  So sad.  Sounds like the kind of guy that didn't want to be a burden to others.  Again, my condolences.  And hopefully you have happy memories of him that will somehow help to ease the grief of your loss.

I'll be praying for you Todd.

Donna~

Allochka's picture
Allochka
Posts: 960
Joined: Nov 2014

Sorry for your friend's loss..

. But about lymph nodes - they swell for so many reasons! My husband had some slightly swelled nodes in his stomach. Docs were not concerned at all, judging by nodes' look. It was 1.5 years ago, he is fine now. Perhaps it was a swelling due to stomach infection or his hepatitis, butnothing to do with RCC.hope yours turn out OK too!

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Sometimes I should just listen to them. I think you're all right and in this case I'll do that. Back to waiting for my next scans.

Hugs,

Todd

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

Hi Todd,

I am sorry to hear about your friend. I remember you mentioning him a few times. You were a good friend to him.

I know that the lymph must worry you a bit. But as the doctor seems to be adhering to the 15mm guideline you really cannot do anything but "watch and wait"....oh how I dislike that term. Watch and wait seems to go in slow-mo. But hang in there, my friend. We are watching and waiting with you!

Hugs

Jojo

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