Got referred to an oncologist... Left supraclavicular lymph node [Archive]

Mostu

30-04-20, 16:20

Hello. I am 24 years old, male. A few days ago, I accidentally noticed an enlarged lymph node above my collarbone. I went to my doctor, and she told me that the node is called a sentinel node and that it's really concerning because many cancers like stomach and pancreatic metastize there. My oncologist visit is on May 7, so in a week. My anxiety is through the roof now. I've read about the node and I'm pretty certain that I'll be gone within 6 months, because mets to that particular lymph node mean that the cancer is stage 4 already. I had some clear scans within the last year, particularly:
-abdominal MRI 04.2019
-chest ct, bronchoscopy, abdominal ultrasound 11.2019
-upper GI scope 12.2019

Its unlikely that a gastric cancer grew and spread within 6 months from the last scan right? And the same goes for pancreatic cancer, my pancreas were clear on an mri a year ago.

O_O

30-04-20, 17:33

I'm sorry, how scary for you.

I've been reading a lot about lymph nodes lately and one thing I know is that in the under 30s a swollen supraclavicular node is still more likely to be non-cancerous than cancerous. So I don't think it's a done deal. But of course you will be very scared all the same, and naturally your doctor is concerned.

I'm just speculating here as a lay person but I'd have thought at your age metastatic stomach or pancreatic cancer would be very rare?! Especially given your clear scans - I'm not sure it's even possible for a cancer to suddenly spring up and metastasise that quickly! If we're talking cancers then I'd have thought a lymphoma would be more likely - which are VERY treatable, and usually curable if they're high-grade.

I don't think there's anything I can say to make you feel better - maybe if I knew some anxiety management techniques, but I'm rubbish at that! I'm sure some other people have some good tips, though.

I just didn't want to read without commenting because I know you must be really frightened. I just want to say that I'm thinking about you, and I will think about you on the 7th.

In the meantime I hope you can find a way to relax a little - maybe play some silly online games, or watch some funny shows, or chat with your friends?

Mostu

30-04-20, 18:01

Thank you really much, that's very kind of you. I do realize that I could have a benign problem here, but still, I'm really worried. To be fair, and without offense to anyone suffering with the big C, I'm kind of hoping that it's just one of the treatable diseases like lymphoma or testicular. I'm trying to keep myself occupied, but I'm reading about the bad stuff all the time, and even when watching something with my girlfriend or playing games, my brain goes "no, you can't be happy, you have a problem, better dwell on it". It'll be a long week, but thanks for the support!

O_O

30-04-20, 18:12

I know, I'm exactly the same. A lot of my downtime is ruined by just worrying about the worst case scenario.

One thing I've noticed is that sometimes anxious people sort of misinterpret what their doctors say - so if a doctor mentions something ominous as a possibility, you might latch onto that and think it's as good as a diagnosis. When in reality your doctor might just be exercising due diligence. Of course, I have absolutely no idea what your doctor is really thinking, or exactly what she said, but it's just something to bear in mind.

There's a lot of talk about enlarged supraclavicular lymph nodes, and we all know they need to be checked out, but all I can say is that in must cases for somebody your age it's benign. If it's not benign, then a treatable lymphoma would be soo much more likely than metastatic cancer.

At any rate, good luck - both with the diagnosis and with dealing with the wait!

katniss

30-04-20, 22:16

Ummm.. why would your doctor send you to an oncologist all of a sudden? I would think they would do bloodwork, ultrasound etc; She TOLD you it was a sentinel lymph node?

I have two left supraclavicular nodes. I was horrified when I found them! One is as tiny as a dot and hasn’t grown. The other one came up a day after I got the flu shot. It was huuuuge! About 2cm long. It was very mobile and went down to less than 1cm in a week. However I am skinny so I can still feel it. Sometimes I feel it a lot and the next day it’s sore. Anyway, long story short, you can have left supraclavicular nodes come up for other reasons too. It’s not all doom n gloom. I’m surprised at the route your doc took. How big is your node? Is it stony hard? Is it mobile?

I will be honest, sometimes I get scared about my supraclavicular nodes randomly but then I calm myself down. Going through a phase right now too where I keep checking them.

Mostu

01-05-20, 01:50

It's about 1cm long. My doctor referred me to an oncologist because she told me that she'd rather fast track this instead of wasting time. And yes, she told me it's a sentinel node. Hopefully you're right and my node is of benign origin...

Edit: it's not stony hard, it's mobile and it's about 1cm in the longest dimension. It's elliptical, kind of like a sideways number "0"

katniss

04-05-20, 18:41

Elliptical and mobile are GOOD signs! Please keep us updated :)

Fishmanpa

04-05-20, 22:22

To be fair, and without offense to anyone suffering with the big C, I'm kind of hoping that it's just one of the treatable diseases like lymphoma or testicular.

Do you see what you did there? You've resigned yourself to having cancer and the dragon is thrilled! The chances this is benign are far, far greater than it being sinister. Let us know how you make out.

Positive thoughts

Mostu

07-05-20, 09:56

A quick update. Went to the oncologist today, he took my history and checked the lymph node. He described it as soft, small(under 1 cm) with clear borders. I told him my concerns and he's pretty certain that I don't have metastatic cancer, since metastatic nodes are hard and mine is soft, I had plenty of tests done with clear results, and I'm only 24 so it would be extremely unusual for this to be something sinister. Oh, and he's also not sure if it's supraclavicular - he told me that it's on the border of supraclavicular and posterior cervical, so that's a plus too. He then asked me if I have some symptoms like weight loss and night sweats, and I told him that indeed I had a few nights in the last months where I woke up and was drenched. He referred me to a neck ultrasound in a month and I'll see him right after that, if the ultrasound shows the node as reactive then it'll be fine, but if it shows some bad signs then we'll have to biopsy the node to check for lymphoma. So, it's either something benign or a lymphoma. I should feel relieved but I'm not.

O_O

07-05-20, 17:04

It sounds to me like you're handling things very well and rationally.

I'm glad to hear it's not metastatic cancer, though I'm not surprised! It didn't seem likely, based on your age and symptoms.

I hope you'll feel ok over the next month while you wait for your scan. I recently had some nodes in my neck scanned but I was lucky and only had to wait a week. One of them actually looked abnormal, too, but the biopsy came back clear - turned out to be toxoplasmosis!

If it is lymphoma, it sounds like it would be Hodgkin's or one of the high grade NH types. They are nearly always completely curable. It sounds like whatever it you're getting it sorted quickly, too.

Here's hoping it's just something benign, anyway.

Mostu

07-05-20, 17:41

I gave it more thought and I'm much calmer now. The doctor is the head of the oncological ward, if he suspected something sinister he surely wouldn't tell me to wait for a whole month. He reassured me that it's either nothing or a very treatable lymphoma and that makes me happy, however I still can't shake the fear that something will happen to the node during the month, like it'll get hard as stone or something. Guess it's just the nature of health anxiety ¯\_(ツ)_/¯

katniss

08-05-20, 03:57

I logged on just to ask how your appointment went. Sounds like you got some reassurance and it is very likely benign! Yay!

Mostu

03-06-20, 11:04

So it's been a month. Tomorrow is my neck ultrasound and I'll be talking about the results with my oncologist right after. The lymph node is still there unfortunately, but it didn't change in size and consistency as far as I can tell. I'm really anxious now. There's two possibilities tomorrow:
1) the ultrasound shows that the lymph node is reactive/benign and I can finally shake all that anxiety off
2) the ultrasound shows that the lymph node is abnormal and I'm scheduled for a biopsy

I really hope it's the former, because I don't think I'll be able to deal with the stress of knowing that I have cancer, but I need to wait for a biopsy, and then for results. It'll be too much for me to handle.

Beckssnithxxx

04-06-20, 13:09

Hey! I hope your ultrasound goes well. I have a supraclavicular node on my left side I can feel. I had an ultrasound in feb but it’s not the only node I have, lots in my neck (submandibular and submental and cervical nodes) I can feel them all, I was told they are reactive. I also have some under my armpit roughly 1cm maybe just over but apparently normal too. These have been with me since December. I was doing okay with my anxiety although still having it looked at again but two weeks ago I found the same supraclavicular node in my 18 month old son. I’m terrified, I’m 24 but he’s 18 months old I’m trying to tell myself it’s nothing but what kind of coincidence is that.. he is nursed as well so I’m thinking all terrible things. He has an appointment tomorrow. I hope you scan goes well :)

Mostu

04-06-20, 13:16

Well good news and bad news. The good news are that I have the same thing as you - multiple, reactive lymph nodes scattered around my neck. The one I was worried about wasn't even described as supraclavicular, but rather lower cervical, measured 11x4mm and is fine. The bad news is... she found a suspicious nodule on my thyroid with microcalficications - worrisome for malignancy. I'm not particularly worried because it has a high cure rate, but I wish I was given an all clear :(

nicole97

04-06-20, 15:57

So glads the nodes are fine! I wouldn't worry at all about the thyroid nodule. IF it's something, those are super slow and easy to cure. Depending on the size, they may not even do anything yet. I have several nodules on my thyroid with similar characteristics, but they are so small, they can't even biopsy them, so they just watch. Once a year I go for an ultrasound to see if they have changed at all.

Beckssnithxxx

07-06-20, 18:06

Oh bless you, they found two nodules on my thyroid too. But level 2 so the endocrinologist decided it’s not worth investigating. I think they are so common and also it can still be nothing! Fingers crossed for you! I’m still having my nodes investigated because they are so bloody uncomfortable :(

Mostu

12-07-20, 10:06

Thought I'll update. So I actually got diagnosed with thyroid cancer after a FNA biopsy. Sick of people telling me that I wished it upon myself over all those years of health anxiety.

BlueIris

12-07-20, 11:02

I'm really sorry to hear that. Wishing you a speedy recovery.

O_O

12-07-20, 12:19

I'm so sorry Mostu. How are you feeling at the moment?

It's awful that people are telling you that you wished it upon yourself. Obviously, nothing you did caused this. Anybody who's telling you that sounds toxic and I hope you don't listen to them.

I really hope your treatment goes well and that you have people around you who love you and support you.

ErinKC

12-07-20, 13:51

Thought I'll update. So I actually got diagnosed with thyroid cancer after a FNA biopsy. Sick of people telling me that I wished it upon myself over all those years of health anxiety.

I'm so sorry to hear that and even more sorry that people are saying terrible things to you. I wish people could better understand health anxiety. I'm glad that you were proactive in getting yourself checked. I think one of the biggest struggle of the health anxious person is questioning our own instincts when it comes to health - is this real or is it in my head? - especially after years of people dismissing concerns as anxiety. There is a balance and it seems like you really did strike it here by taking a clear and measured course of diagnosis. I'm sorry about your diagnosis, which must be scary! But, like you said earlier, thyroid cancer is very treatable and I hope you can have things taken care of quickly!

Keep us posted!

Scass

13-07-20, 21:14

I'm so sorry to hear that and even more sorry that people are saying terrible things to you. I wish people could better understand health anxiety. I'm glad that you were proactive in getting yourself checked. I think one of the biggest struggle of the health anxious person is questioning our own instincts when it comes to health - is this real or is it in my head? - especially after years of people dismissing concerns as anxiety. There is a balance and it seems like you really did strike it here by taking a clear and measured course of diagnosis. I'm sorry about your diagnosis, which must be scary! But, like you said earlier, thyroid cancer is very treatable and I hope you can have things taken care of quickly!

Keep us posted!

I’m really sorry about your diagnosis. What Erin has written is so true. I am wishing you well & sending best wishes.

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