Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Petrified, Supraclavicular Node Enlargement & Gastric Symptoms... Cancer?


designerstubble

Recommended Posts

designerstubble Enthusiast

Hi everyone

Its been a while since I have been on here... I have been slowly recovering from my diagnosis of celiac disease... And have had ups and downs, various problems... All of which are sorted or being sorted!

 

However a few days ago, I accidentally discovered a lump on my clavicle.

 

Thinking this was strange and wondering whether it was a swollen lymph node, I began searching online. I also made a docs appt. Having researched it, I am absolutely petrified.

 

Please PLEASE if anyone can help, I'd appreciate it so much. My searches indicate that it could possibly be a Trosiers Sign, which apparently is indicative of stomach cancer/ or gastric. 

 

The lump is in exactly the correct the place. It isn't soft (as apparently a healthy gland would be), it is hard. It is not completely fixed as I seen to be able to move it about.

 

I am also currently experiencing heartburn, discomfort in oesophagus area (fullness), and cannot eat much. I thought this was due to a hiatus hernia that I was told I had at my celiac diagnosis 3 years ago. I have had these same symptoms before about 6 months ago. Currently had them for .a couple of weeks

 

So these 'hiatus hernia' symptoms along with this supraclavicular lump could indicate cancer?? Could it be early stage? 

 

I have seen my doc, he is referring me... He said he couldn't speculate at this point, which has also made me edgy.

 

So I have found what they call virchows node and trousers sign... My 'lump' is in the exact correct location. 

 

I can't say just how scared I am.

I am stricly gluten free... My recent FBC is fine (am no longer anaemic), white cells look ok, SED rate 6.

 

If anyone has any reassurance or info or experience one way or the other... I can't function for worry at the moment...

 

Many thanks to anyone that can help

 

 

 

 

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GF Lover Rising Star

Hi, Stubble.  No one can speculate at this point and it would be irresponsible to try.  Try to stay off of Doctor Google.  Try and distract yourself until your Appointment.  Not knowing things is very hard, I know.  Just try and calm down.  The more you stress your body with this fear and stress the more your body has to work to stay healthy.  

 

Hang Tight .... Colleen

designerstubble Enthusiast

Hi, Stubble.  No one can speculate at this point and it would be irresponsible to try.  Try to stay off of Doctor Google.  Try and distract yourself until your Appointment.  Not knowing things is very hard, I know.  Just try and calm down.  The more you stress your body with this fear and stress the more your body has to work to stay healthy.  

 

Hang Tight .... Colleen

Thanks Colleen. 

Thats a fair response I guess! I can't help myself on Doctor Google... I am quite medically minded (possibly to my detriment)... It's so upsetting as I have tried so hard to stay healthy, I hardly eat any processed food, exercise as much as I can... I'm gutted at the moment... All I can think of is my little boy :-(

Thanks for responding

GF Lover Rising Star

Turn on some music.  And remember, It's cocktail hour somewhere :).

LookingforAnswers15 Enthusiast

Hi, I'm sorry that you are going through this and I really have no medical advice to offer. I am also so scared regarding some of my symptoms so I know it is so hard to try not to think about it until we get to see a doctor but please try! Hang in there! It is better that doctors do not speculate about possibilities although it can seem shady to us. I know that I would want to know the best and worse scenarios and possibly hearing something bad (which does not mean that is actually happening to you because you do not have test results) would just freak you out for no reason.There are so many scenarios, including good ones, so until you get tested you won't know. Your healthy lifestyle is a good thing. You are doing everything you can at the moment. 

bartfull Rising Star

I wish I could pass along my "ostrich syndrome". It is my head in the sand way of dealing with things I have no control over. If I have something going on that would worry most people I just ignore it. I get involved in a good book or find other distractions.

 

You could try that. Stay busy and when you're not busy either read or get into a good movie. Another thing that may help is to put your mind on other people. If you're worried about someone else you won't have time to worry about yourself.

 

And remember, 99.999 percent of the time, the things we worry about never come to pass.

designerstubble Enthusiast

Hi, I'm sorry that you are going through this and I really have no medical advice to offer. I am also so scared regarding some of my symptoms so I know it is so hard to try not to think about it until we get to see a doctor but please try! Hang in there! It is better that doctors do not speculate about possibilities although it can seem shady to us. I know that I would want to know the best and worse scenarios and possibly hearing something bad (which does not mean that is actually happening to you because you do not have test results) would just freak you out for no reason.There are so many scenarios, including good ones, so until you get tested you won't know. Your healthy lifestyle is a good thing. You are doing everything you can at the moment. 

Thank you for replying! I am sorry you are going through tough times too. Thanks for being so positive, I know I need to try and get on and try to ignore... Being medically minded I am looking for answers on Dr Google... to my detriment. As much as I don't want to die, for myself I want to live! But it is more for my little boy, we are so very close, and I don't know what would happen to him. Thinking about about it makes me want to vomit! And cry! Tomorrow hopefully I will drag myself up a notch! For his sake. And I will continue with my healthy lifestyle, you are right there is nothing I can do!! Many thank you's, hugs


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



designerstubble Enthusiast

I wish I could pass along my "ostrich syndrome". It is my head in the sand way of dealing with things I have no control over. If I have something going on that would worry most people I just ignore it. I get involved in a good book or find other distractions.

 

You could try that. Stay busy and when you're not busy either read or get into a good movie. Another thing that may help is to put your mind on other people. If you're worried about someone else you won't have time to worry about yourself.

 

And remember, 99.999 percent of the time, the things we worry about never come to pass.

Bartfull! I remember you from a few years ago! How are you doing? Are you eating maize yet?? Thanks for replying.

Send me some ostrich syndrome pleeeeeeaaaaaase. I'm having a real bad one here.

I hope you are right about the 99.9999 percent... I have had SO much bad luck since my celiac diagnosis, the latest a diagnosis of a brain fistula bought on by dehydration of undiagnosed celiac! And now this.... There is only so much someone can take in less than  3 years! I guess what I wanted to know is if anyone knew about Troisiers node/Vichows node and if that meant it was stomach cancer with mets... I mean could I have stomach cancer with mets without losing weight? 

It's ok, I am not expecting you to answer, I am just airing!! Thanks for replying, send me some courage! Hope you are well, and still enjoying your shop :-)

nvsmom Community Regular

((hugs))

It's true, we often misdiagnose ourselves when we take responsibility for our own health.  In the past 3 years, I thought I had lupus and acromegaly with a small brain tumor.  Thankfully I was wrong, so I sort of understand your stress, to a lesser degree.... It's hard to wait. Not knowing is a scary thing. 

 

If you want to take some benign but potentially helpful action now, you could consider a low carb/sugar diet.  Cancers live on sugar.  If you do not eat sugar or starches, it can't be fed. I so hope you don't have cancer, but a change in diet, even leaning towards a ketogenic diet, could help and it won't hurt if you are fine.  I only mention it because I know I like to take action when I have a health problem (it helps me feel better- more in control), and I think some people feel the same way.

 

Hang in there.  ((hug))

bartfull Rising Star

I'm doing OK, Designer. Suffering right now from a mystery glutening - only the second time I've been glutened since I started. I believe it was CC in some ice cream I ate.

 

But yeah, I got corn back and soy and even blueberries (my favorite.)

 

I hate seeing you consumed by worry. My Mom worried about just about everything and I think seeing that made me learn NOT to be. I wish I could send you some of my ostrich. But maybe some of these quotes will help: Open Original Shared Link

 

Take one or two a day and dwell on THEM. No matter how far off your appointment is, there are enough to take you there and beyond.

 

In the meantime, pray if you are someone who prays. And I will be praying for you too.  (((((HUGS)))))

beth01 Enthusiast

I agree with the others, stay off the internet. A month before my celiac diagnosis I could have sworn I had MS and Early onset Alzheimer's.  I had a mediastinal  mass that was wrapped around my aorta in 2010 and gave myself cancer before the mass was even removed, which was totally benign as were the other enlarged lymph nodes found in my chest.  Our bodies don't follow normal medical protocol, we are a species of our own.

LookingforAnswers15 Enthusiast

Thank you for replying! I am sorry you are going through tough times too. Thanks for being so positive, I know I need to try and get on and try to ignore... Being medically minded I am looking for answers on Dr Google... to my detriment. As much as I don't want to die, for myself I want to live! But it is more for my little boy, we are so very close, and I don't know what would happen to him. Thinking about about it makes me want to vomit! And cry! Tomorrow hopefully I will drag myself up a notch! For his sake. And I will continue with my healthy lifestyle, you are right there is nothing I can do!! Many thank you's, hugs

You really do not need to thank me. Fear is one of the worst emotions. Some very kind people calmed me a bit down yesterday. I would not call myself positive these days when I am thinking about myself but we can be more rational,positive, and composed when looking at someone else's situation. I am having a hard time not thinking about my issues but I am trying even if it means watching one movie after another. I have also spent a lot of time looking up things online. However, I feel that I have to because of my experience with doctors.

 

Please, please do not even think about the worst case scenario!!! When is your dr.'s appointment? Find something to do to distract yourself as much as possible. I am sending you positive thoughts, prayers, and hugs. 

RMJ Mentor

When I was in my early 30s I had an enlarged lymph node in my armpit. My doctor thought it might be advanced breast cancer and sent me for an "emergency mammogram." It turned out to be mononucleosis and in a few days I came down with more symptoms. I hope your lymph node is equally benign.

Hugs,

Ruth

icelandgirl Proficient

Hi and ((((hugs))))!

I'm so sorry that you are having these worries. I understand as I am the type to worry and Google and diagnose myself. Ugh! I do think it's good that the Dr didn't speculate. In my 20's, prior to having an MRI done, my Dr at the time told me that I had either a brain tumor or MS. I was completely devastated...turned out I had neither, but I sure did worry a lot.

Of course you think about your little boy when you are worried. I so get this. I have 3 kids...my youngest is almost 4 and they are the first thing I think of when something is wrong. I just want so much to be there for them.

Has your referral come through yet? Until it does and you see someone, try your best not to Google. Go out and do some fun with your little one instead. Something that brings you both joy. Try to stay busy too. Most of all...take care of yourself.

Please let us know how things go.

designerstubble Enthusiast

((hugs))

It's true, we often misdiagnose ourselves when we take responsibility for our own health.  In the past 3 years, I thought I had lupus and acromegaly with a small brain tumor.  Thankfully I was wrong, so I sort of understand your stress, to a lesser degree.... It's hard to wait. Not knowing is a scary thing. 

 

If you want to take some benign but potentially helpful action now, you could consider a low carb/sugar diet.  Cancers live on sugar.  If you do not eat sugar or starches, it can't be fed. I so hope you don't have cancer, but a change in diet, even leaning towards a ketogenic diet, could help and it won't hurt if you are fine.  I only mention it because I know I like to take action when I have a health problem (it helps me feel better- more in control), and I think some people feel the same way.

 

Hang in there.  ((hug))

Hi Nvsmom, how you doing?! Oh it's so lovely to talk to guys again (ladies!)... Thanks for replying.

Yeah, I guess I have such awful rouble previously with doctors that I search Dr Google to eliminate any sinister possibilities myself, and actually end up going down the dark alleys. 

Funnily enough, I quit sugar 3 weeks ago! Before any of this. I doubt I could get ketogenic (I'd love to) but I'm vegetarian also (cannot have nuts due to sons anaphylaxis) and I'm lactose intolerant. I have the odd green juice, and my diet is quite clean (lots of salad and veg, eggs, avocados, fruit, matcha green tea, occasional fish)...

But you are right, I am glad I quit the sugar as I did have chocolate and sweeties before.

Its been a ride these 3 years, always something being checked out, major amounts of stress sometimes. I just want to be healthy and happy! And get on with my life! Its hard Nvs, as all I think about is my son, we are very close... 

Thank you so much again, hugs to you, I hope you are doing great :-)

designerstubble Enthusiast

Hi and ((((hugs))))!

I'm so sorry that you are having these worries. I understand as I am the type to worry and Google and diagnose myself. Ugh! I do think it's good that the Dr didn't speculate. In my 20's, prior to having an MRI done, my Dr at the time told me that I had either a brain tumor or MS. I was completely devastated...turned out I had neither, but I sure did worry a lot.

Of course you think about your little boy when you are worried. I so get this. I have 3 kids...my youngest is almost 4 and they are the first thing I think of when something is wrong. I just want so much to be there for them.

Has your referral come through yet? Until it does and you see someone, try your best not to Google. Go out and do some fun with your little one instead. Something that brings you both joy. Try to stay busy too. Most of all...take care of yourself.

Please let us know how things go.

Thanks Iceland girl

Everyone on here is so lovely, and of course right with advice. I just want to rule out the sinister reasons for this lump in my collar bone, and it all points to malignancy... Apparently 90 percent of those over 40 with enlarged nodes in collar bone are malignant. It really has petrified me. I feel well apart from hiatus hernia symptoms which I now wonder if are something more sinister.

Anyway, mustn't dwell hey?

Ugh! 

Thank you so much for replying, you are all such lovely people :-) I will stay off Dr Googe today and spend time with my gorgeous boy... Hugs to you

designerstubble Enthusiast

When I was in my early 30s I had an enlarged lymph node in my armpit. My doctor thought it might be advanced breast cancer and sent me for an "emergency mammogram." It turned out to be mononucleosis and in a few days I came down with more symptoms. I hope your lymph node is equally benign.

Hugs,

Ruth

Thankyou RMJ... Thats reasuring a little.... I do hope mine is the same....It is sinister because of my age and because of its location, as you are not supposed to be able to palpate these nodes freely. :-( I know it wasn't there before... Its 1cm ish and hard. Hard apparently isn't good either. Ugh!

Thanks for replying, everyones support means a lot, fingers crossed 

Hugs

nvsmom Community Regular

Hi Nvsmom, how you doing?! Oh it's so lovely to talk to guys again (ladies!)... Thanks for replying.

Yeah, I guess I have such awful rouble previously with doctors that I search Dr Google to eliminate any sinister possibilities myself, and actually end up going down the dark alleys. 

Funnily enough, I quit sugar 3 weeks ago! Before any of this. I doubt I could get ketogenic (I'd love to) but I'm vegetarian also (cannot have nuts due to sons anaphylaxis) and I'm lactose intolerant. I have the odd green juice, and my diet is quite clean (lots of salad and veg, eggs, avocados, fruit, matcha green tea, occasional fish)...

But you are right, I am glad I quit the sugar as I did have chocolate and sweeties before.

Its been a ride these 3 years, always something being checked out, major amounts of stress sometimes. I just want to be healthy and happy! And get on with my life! Its hard Nvs, as all I think about is my son, we are very close... 

Thank you so much again, hugs to you, I hope you are doing great :-)

 

I'm okay. Having some issues with arthritis, not my old celiac-caused type of arthritis, which is slowing me down, but overall I'm fine.

 

Dr google is a good friend to people like you who have had doctors fail us so badly.  At least you are going into this appointment well prepared and know what to ask about.  You're ahead of the game. Hopefully you are like me and have researched too far.  

 

The acromegaly that I thought I had (with a pituitary tumor) is often found by high levels of growth hormone and mine were waaay high; I had some symptoms too.  The only cause I could find was a pituitary tumor until I found one article in a veterinary journal about high T3 thyroid hormones causing a rise in GH and IGF-1.  That one tiny article out or dozens was probably the one that fit best with me although I cringed at the large animal comparisons.  LOL ;)  

 

Hang in there. it may be something else even if it all appears to be pointing one way.

 

Good for you for giving up sugar.  I've been battling that for a year - it's hard to do!  You are a stronger woman than I.  I am slowly working towards a mild keto diet myself.  The Wahl's protocol is  pretty good.  she recommends about 6-9 cups of veggies  (minimal fruit) per day with added coconut cream/milk from a can or coconut oil.  She wants meat with most meals  but keeps it to 6-9 oz per day.  Adding in the extra fats might help you get to keto, if it is something you would like to try.  If not, forget I said anything.  :);)

 

I'll be thinking of you.  Keep letting us know how you are doing, and not just when you have seen a doctor.  :) (hug)

designerstubble Enthusiast

I'm doing OK, Designer. Suffering right now from a mystery glutening - only the second time I've been glutened since I started. I believe it was CC in some ice cream I ate.

 

But yeah, I got corn back and soy and even blueberries (my favorite.)

 

I hate seeing you consumed by worry. My Mom worried about just about everything and I think seeing that made me learn NOT to be. I wish I could send you some of my ostrich. But maybe some of these quotes will help: Open Original Shared Link

 

Take one or two a day and dwell on THEM. No matter how far off your appointment is, there are enough to take you there and beyond.

 

In the meantime, pray if you are someone who prays. And I will be praying for you too.  (((((HUGS)))))

Bartfull, thanks so much...Yes, I need some Ostrich! I must be like your mum! Although I am generally pretty laid back, except when it comes to a fear of dying... Which has intensified since I had my little boy. Thank you for the link, I will look tonight :-) And I will keep one to carry with me. Thank you so much (weep)...

I am so glad you got corn and soy AND BLUEBERRIES back in!! And sorry you are not too great... Are you feeling better? Massive ((((hugs)))) back to you

designerstubble Enthusiast

I'm doing OK, Designer. Suffering right now from a mystery glutening - only the second time I've been glutened since I started. I believe it was CC in some ice cream I ate.

 

But yeah, I got corn back and soy and even blueberries (my favorite.)

 

I hate seeing you consumed by worry. My Mom worried about just about everything and I think seeing that made me learn NOT to be. I wish I could send you some of my ostrich. But maybe some of these quotes will help: Open Original Shared Link

 

Take one or two a day and dwell on THEM. No matter how far off your appointment is, there are enough to take you there and beyond.

 

In the meantime, pray if you are someone who prays. And I will be praying for you too.  (((((HUGS)))))

PS. I picked one...

"He who fears he shall suffer, already suffers what he fears"

 

Massive thanks and hugs

  • 2 months later...
kaile Newbie

designerstubble, i came across this forum & your post because i have a feeling i have a gluten intolerance while also noticing supraclavicular lymph nodes.  i was wondering if you have any updates on whether it was benign.  hoping for the best!

  • 4 months later...
designerstubble Enthusiast

Hi Kaile

Only just seen this, sorry... Its been a stressful few months.

How many and how big are your nodes? Are they still there? The supraclavicular ones are the 'worrisome' nodes unfortunately... This is what I have. I am still under testing and watch and wait...

All the best

 

Kimmy

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,041
    • Most Online (within 30 mins)
      7,748

    Vfoley422
    Newest Member
    Vfoley422
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.