It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lymphomas Message Board

  • To all those with Enlarged Supraclavicular Lymph Nodes

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 05-20-2013, 05:14 AM   #1
    lucy157890
    Junior Member
    (female)
     
    Join Date: Apr 2013
    Location: Ireland
    Posts: 20
    lucy157890 HB Userlucy157890 HB User
    Smile To all those with Enlarged Supraclavicular Lymph Nodes

    Hi,

    Just thought I'd post for the first time today as I come to the end of one of the most worrisome times in my life (and believe me I've had many!).

    I'm a 33 year old female secondary school teacher who lives in Dublin, Ireland.

    I've literally spent the last 2 months googling lymphoma/supraclavicular nodes/statistics/nodal size etc etc and I'm surprised that I haven't gone insane! One thing I continually noticed was that very rarely a person, who was lucky enough to receive good news, posted a positive update. This has such a detrimental effect on the scared/anxious person looking for support and information as the internet gives such a skewed viewpoint, leading us to believe that there are only bad news stories out there.

    My story has a happy ending and believe me when I say that I know how fortunate I am. I feel for every person who has to deal with this disease as both my parents have.

    It started on Tuesday 12th March of this year when I found a lump on the left side of my neck. Not just any average lump- A LEFT SUPRACLAVICULAR LYMPH NODE that literally popped out of nowhere. I instantly knew that this was not good and I would soon get used to the faces of medical professionals falling as soon as they saw it.

    I went to the GP on Wednesday 13th March, explaining that I'd had quite a severe staph nose infection and now had a virus. He dismissed this as being unrelated to the lymph node. Said I had one of three things 1. Lymphoma 2. Sarcoidosis 3. T.B. Told me to go straight to A&E, pack an overnight bag and that they would know quite soon why the lymph node was up.

    Instant panic.

    Waited patiently in A&E, was finally seen. Bloods clear, X ray clear. Jubilations.

    GP rang following day, sounded surprised that I wasn't in hospital and said results were 'encouraging'. What the hell does that mean?

    Few weeks went by, lymph node still enlarged. Think that it might have been MRSA so go back to different GP in the hopes of getting antibiotics.

    GP shocked at lump. Sends me for ultrasound. Ultrasound shows several enlarged MATTED left supraclavicular nodes, the biggest being Virchow's Node at 3.6 cm. Alarm bells. Also have thyroid nodules on both sides. Great. They're very small though.

    GP signs me off for week (which makes me feel sick). Has me come in day later for extensive bloods (12 vials), the results of which are completely normal. I'm told this is a good sign....then every single doctor following this says that bloods don't mean anything until you have advanced disease. ***?

    Go to private ENT consultant on Friday. He does nasal endoscopy. Gross. All normal.

    Gets senior pathologist to do FNA following Monday (again mixed opinions, not worth doing???). Lots of looks happening between doctors and no, I'm not being paranoid!

    Have neck and chest CT with contrast next day at 9 am. Everything happening very quickly.

    Next day, CT results in. Shows enlarged supraclavicular area- reactive and inflamed, but don't know to what. Biggest node is 3 cm.

    Excisional biopsy the next day (Thurs- head is in a spin).

    As I'm being wheeled in to theatre, am told by ENT surgeon that FNA came back reactive (obv I'm worried about it being a false negative- online we're told that false negatives are common- ACTUALLY THEY'RE NOT REALLY- Reed Sternberg cells too big to get through needle- NOT TRUE, they're just quite sparse in most hodgkins lymph nodes).

    When I come out of recovery, surgeon says he wants to send me to Breast Care because of an inflamed axillary lymph node (I freak, my Mum had breast cancer). First I heard of it. Plus an abdominal and pelvic CT.

    Cue panic....AGAIN.

    Go to Breast Care. Get examined, ultrasound and then discharged. All well.

    Results of biopsy due on Monday 13th May. Am called that morning, results not back yet. Devastated.

    Results in this morning, Monday 20th May. Lymph nodes are reactive! Totally benign! Overjoyed and am discharged.

    Know this post is long but really wanted to put something out there that all enlarged lymph nodes above the collarbone aren't automatically cancer. Some are, of course, but not all. The statistics say that 25% of people under 40 will have cancer if they have this presentation and 90% of people over 40. Those statistics are frightening. Just want to give a bit of hope when I had none.

    Of course, a thorough check is essential. Get all the scans, biopsies, blood tests you can. There are just too many scary stories out there so, keep your spirits up and don't be like me and read every single piece of irrelevant information. Your case is individual, all those stories have no relevance to you!

    I hope this post does not cause offense. I realise how lucky I am and I wish everyone hope, healing and happiness as you proceed in your journey.

    Best wishes

    Lucy

    Last edited by lucy157890; 05-20-2013 at 12:57 PM.

     
    The Following 3 Users Say Thank You to lucy157890 For This Useful Post:
    eddarun (05-25-2013),Seraph (06-03-2013),volleyball2 (07-21-2013)
    Sponsors Lightbulb
       
    Old 05-20-2013, 06:59 AM   #2
    Upatnight
    Member
    (female)
     
    Upatnight's Avatar
     
    Join Date: Aug 2006
    Location: Georgia, USA
    Posts: 64
    Upatnight HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    Great Post!

     
    Old 05-24-2013, 11:50 PM   #3
    eddarun
    Newbie
    (female)
     
    eddarun's Avatar
     
    Join Date: May 2013
    Posts: 7
    eddarun HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    LUCY! this is really what I needed! No one seems to be bothered to post when there is a happy ending, I have been scanning the internet looking for stories like yours and have found very very few! thank you for posting this and congrats on the good news

     
    Old 05-26-2013, 12:41 PM   #4
    lucy157890
    Junior Member
    (female)
     
    Join Date: Apr 2013
    Location: Ireland
    Posts: 20
    lucy157890 HB Userlucy157890 HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    Awwww thank you! I felt exactly the same way. One positive story is all you need to lift your spirits. It's not all bad news and hopefully you'll get a happy ending too!

    Have my fingers crossed for you xxx

     
    Old 05-31-2013, 05:48 PM   #5
    Olinm
    Newbie
    (female)
     
    Olinm's Avatar
     
    Join Date: Feb 2011
    Location: Ca
    Posts: 9
    Olinm HB User
    Smile Re: To all those with Enlarged Supraclavicular Lymph Nodes

    Interesting post. I had a similar experience several years ago when i presented in the ER with shortness of breath. The ER doc noted enlarged supraclavicular lymph nodes & I was admitted asap. My family was told there was a 90% chance of a malignancy. (i was never informed)

    Following 5 days of imaging & extensive testing I was discharged on Christmas day. All tests were normal. The docs couldn't find a thing.

    Often times it's not as it appears. In my situation the lymph nodes enlarge & return to normal (and still do) It's more of a deregulation of fluid. Certainly, certainly not what was believed originally.

    Positive thoughts to all

     
    Old 06-02-2013, 11:46 AM   #6
    eddarun
    Newbie
    (female)
     
    eddarun's Avatar
     
    Join Date: May 2013
    Posts: 7
    eddarun HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    Lucy, may I ask you something?

    Your ultrasound showed the node to be 3,6 cm and the CT scan showed ot to be 3 cm. Whet it was removed, how bog was it? did you ever get that info?

    there has been some confusion about the size of my nodes, the ultrasound measures them to be bigger than the CT scan....I really want to believe that the CT scan is more accurate.

    The ultrasound states that my biggest node is 2,5 cm but when I feel it with my fingers it does feel closer to 2 cm.

     
    Old 06-02-2013, 03:49 PM   #7
    lucy157890
    Junior Member
    (female)
     
    Join Date: Apr 2013
    Location: Ireland
    Posts: 20
    lucy157890 HB Userlucy157890 HB User
    Wink Re: To all those with Enlarged Supraclavicular Lymph Nodes

    Hi Eddarun,

    Well I can't fully answer your question but it's definitely one that crossed my mind at the time. My ultrasound said the biggest node was 3.6cm and then the CT, one week later, said it was 3cm. I asked a doctor friend of mine about the accuracy of the measurements and she told me that US and CT are both pretty accurate. So, in my case, I was hoping against hope that my biggest node had reduced in size.

    I did ask my surgeon about the size of the node that they removed. He didn't give me any measurements and said that they did not remove/could not remove the full node as there is an important nerve underneath it and they didn't want to do any damage.

    Sorry I can't help you anymore with your query.

    Have you had any further investigations or are you in the horrible "waiting room"?

    Remember that a node is still regarded as being normal when it is 2cm so your node/nodes aren't that big. When I originally presented myself to the first GP, he guesstimated that my node was 3-4cm so I like to think that they were reducing all the time.

    Very confusing nonetheless. I completely understand that nodal size can be very worrisome as we tend to equate size with good or bad news. If I could give you any advice, I'd tell you not to worry too much about the size of your nodes, they're not alarmingly big.

    Please keep me posted. Sending you all the luck in the world! Xxx

     
    Old 10-05-2013, 04:14 PM   #8
    KandySkull
    Newbie
    (female)
     
    KandySkull's Avatar
     
    Join Date: Oct 2013
    Location: Kirkcaldy
    Posts: 1
    KandySkull HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    I would just like to say, Thank you so much for writing about your experience. I to have enlarged Supraclavicular Lymph Nodes, they have been like that for about 6 month now, that last time I went to see my GP he ignored my concerns about this completely but now I have discovered a hard lump behind the swelling and as you can understand I am very worried and searching the internet like a mad woman. I am so pleased that I found your thread, it has really calmed me down a lot. I will be seeing my GP this coming Tuesday and will not leave his office until he takes notice!!

     
    The following user gives a hug of support to KandySkull:
    lucy157890 (10-06-2013)
    Old 10-06-2013, 12:15 PM   #9
    lucy157890
    Junior Member
    (female)
     
    Join Date: Apr 2013
    Location: Ireland
    Posts: 20
    lucy157890 HB Userlucy157890 HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    Please keep me posted on how you get on! Glad I could be of some help. I know how scary it can be. Wishing you the very best x


    P.S. It's been 6 months since my lymph nodes popped up and they're still not fully down. They can take ages! Xx

    Last edited by lucy157890; 10-06-2013 at 12:22 PM.

     
    The Following User Says Thank You to lucy157890 For This Useful Post:
    KandySkull (10-06-2013)
    Old 10-06-2013, 12:30 PM   #10
    eddarun
    Newbie
    (female)
     
    eddarun's Avatar
     
    Join Date: May 2013
    Posts: 7
    eddarun HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    KandySkull. Im sorry you are in this situation, Ive been there and it was the worst time of my life... I just want to add that I had several swollen nodes on my neck and since I replied to the post I have had a biopsy (full node) of a 2,8x1,2 cm node (the biggest) and it was totally benign. My doctors were never worried and did the biopsy against their will because I begged them to and I even had them do a second opinion on the biopsy. I have seen a hundred docs and specialists and had MRI, CT and numberous ultrasounds. The nodes are there (the biggest is now 1,3 cm) and not one of the doccs has ever been worried. So these nodes are often harmless Lucys post helped me a lot in my time of crisis and I am thankful for that, so I hope my story also helpes you KandySkull. Good luck, the odds are that you are just fine

     
    The following user gives a hug of support to eddarun:
    lucy157890 (10-06-2013)
    The Following User Says Thank You to eddarun For This Useful Post:
    KandySkull (10-06-2013)
    Old 12-02-2013, 07:48 AM   #11
    carolink
    Newbie
    (female)
     
    carolink's Avatar
     
    Join Date: Dec 2013
    Location: north hills California
    Posts: 3
    carolink HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    Thank you very very much for this post!!
    I have had for very long time, 2 nodes not so big under my jaw, i was ok with that, but i have been experiencing what seems to be arthritis pain in arm-shoulder joints, so because of that pain i was touching my bones there and i found two little nodes one on each side on my clavicle, and i freaked out, they are not really big maybe one cm or less, and sometimes im not sure if they are nodes cause sometimes they feel like a vein or something like that so maybe its just in my head. After i found them i started reading online, all about those nodes, and i dont have insurance here yet, so i got worried and more worried every time, until i read your post, thanks again, i have not other symptoms, well i have asthma since when i was little and high blood pressure but no any other symptoms, yes i sometimes sweat while im sleeping, but not so much and mostly where i put the blanket on me, around my neck and between my boobs, that sometimes worries me but im a person who normally sweats a lot. I need to find relief to my worries, and try to lesses this hypochondria that is making me crazy. so my questions are: Can everybody feel their supraclavicular nodes? is 1cm a normal size? thank you,

     
    Old 12-02-2013, 07:54 AM   #12
    carolink
    Newbie
    (female)
     
    carolink's Avatar
     
    Join Date: Dec 2013
    Location: north hills California
    Posts: 3
    carolink HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    Thank you very very much for this post!!
    I have had for very long time, 2 nodes not so big under my jaw, i was ok with that, but i have been experiencing what seems to be arthritis pain in arm-shoulder joints, so because of that pain i was touching my bones there and i found two little nodes one on each side on my clavicle, and i freaked out, they are not really big maybe one cm or less, and sometimes im not sure if they are nodes cause sometimes they feel like a vein or something like that so maybe its just in my head. After i found them i started reading online, all about those nodes, and i dont have insurance here yet, so i got worried and more worried every time, until i read your post, thanks again, i have not other symptoms, well i have asthma since when i was little and high blood pressure but no any other symptoms, yes i sometimes sweat while im sleeping, but not so much and mostly where i put the blanket on me, around my neck and between my boobs, that sometimes worries me but im a person who normally sweats a lot. I need to find relief to my worries, and try to lesses this hypochondria that is making me crazy. so my questions are: Can everybody feel their supraclavicular nodes? is 1cm a normal size? thank you,

     
    Old 12-02-2013, 09:06 AM   #13
    lucy157890
    Junior Member
    (female)
     
    Join Date: Apr 2013
    Location: Ireland
    Posts: 20
    lucy157890 HB Userlucy157890 HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    Hi,

    Glad the post could be of some help to you. I'll try to answer your questions from my own limited experience (a doctor is really the best source of information).

    1. From what I know, no one should be able to fill their lymph nodes, in particular in the supraclavicular area as they are in a hollow. I'm sure there are plenty people who are an exception to this rule.

    2. Most normal lymph nodes are around 1 cm. They vary in size depending on location in the body. I found it hard to guess the size of my lymph nodes as I couldn't tell how deep they were.

    If you're concerned and have persistently enlarged supraclavicular lymph nodes, definitely get them checked out. The majority of the time, there is nothing sinister going, just the body reacting to something.

    I wish you all the best. If I can help in any other way, just let me know!

    Take care,

    Lucy

     
    Old 12-02-2013, 09:57 AM   #14
    carolink
    Newbie
    (female)
     
    carolink's Avatar
     
    Join Date: Dec 2013
    Location: north hills California
    Posts: 3
    carolink HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    Thanks again Lucy!
    Well i think i found my nodes there cause i was trying to find something, not that they are easy to be touched just that i put my fingers in the cavity and search and search till i touch something i feel the same in both sides but not really something big maybe less than 1 cm and i cant find them every time i search for them but in my head im all freaked out that i cant sleep and im getting nervous all the time and trying to find symptoms of something else, i really dont have any other symptoms, i have pain in my joints but i work as a nanny and carry a 22 month baby for long periods of time, also i havent lost weight but 2 days ago i started feeling so worried about this that i have eaten less, i hope is nothing wrong, with me

     
    Old 12-02-2013, 11:16 AM   #15
    lucy157890
    Junior Member
    (female)
     
    Join Date: Apr 2013
    Location: Ireland
    Posts: 20
    lucy157890 HB Userlucy157890 HB User
    Re: To all those with Enlarged Supraclavicular Lymph Nodes

    I'm sure there's nothing wrong. If you're really concerned, get yourself checked out. No point worrying needlessly.

    Best of luck!

     
    The Following User Says Thank You to lucy157890 For This Useful Post:
    carolink (12-03-2013)
    Closed Thread




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 11:52 AM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!