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Old 04-23-2013, 05:25 PM   #1
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KiloNovember HB User
My last 9 months story and im still clear! New Member

*warning large wall of text of my story and terrible grammar*

Thought this would maybe help some people who had simmilar symptoms of myself. As I remember scouring the interenet for anything I could find and testimonials of others. Alls I had was a large firm painless lump under my left jaw line. If you want to know more about my story then read on!

My names Kurt and Im 25 years old. I am in the Marine Corps reserves and slave to a unappreciative office job in my civilian side life. A little background about my family. There is a bit of cancer history in my family. My mother had breast cancer, my grandmother on my dads side died of pancreatic cancer, and If i remember correctly my grandfathers both died of cancer. Thought this would maybe help some people who had simmilar symptoms of myself. As I remember scouring the interenet for anything I could find and testimonials of others.

I discovered a firm and Painless lump presumably a lymph node in the left side of my neck under my jaw back in July of 2012. Thought nothing of it and decided to just wait and see if it would go away on its own as I had no other symptoms of anything at all. It didn't and only got larger and harder. So I went and reluctantly saw a Doc because my girlfriend was nagging me about it (FYI im not the type to run to the Doc unless im bleeding profusely from a giant laceration, have broken bones, or any other kinda obviously serious issue i cant resolve myself..) But I did start goin nuts and researching everything it could be.. cancer cancer cancer! Lymphoma! D:!

The Doc sent me to get some blood tests and they looked fine. So to discover the true origins of this mystery lump they refereed me to a surgeon for a possibly biopsy. She first did an ultrasound of my lima bean / large almond feeling friend. Confirmed that yeah it was enlarged. She then said she would like to biopsy and remove the whole lymph node cause apparently needle biopsies suck for the most part and sent me to get my first CAT scan w/o contrast to get a good idea of my anatomy before surgery and to see if other nodes were enlarged as well. Got the scan done, it was harmless and fast. The results did show that I had multiple other nodes even larger then my original discovery in my neck and shoulder area ( was a little bit of a shock and then started wondering okay... maybe this isnt just nothing).

I then scheduled my surgery for the next week.. Oct 12th I do believe it was. Was a little nervous cause I have never had surgery except my tonsils removed when I was like 4 but i couldn't remember that anyways. So it was all pretty new to me. I had my surgery and It wasn't that bad. Maybe like an hour and a half or so long im guessing. Neck was obviously sore swollen and tender. Had a little trouble swallowing for the next couple weeks too. The next week I got the results, and again there was nothing conclusive to any kind of cancers or diseases! No mean cancer cells just chillin in me. The report said it was some kind of Follicular B-Cell Hyperplasia though. Yay good news! Right? But still the question remains what the heck is going on then?? They sent the remaining tissue from my biopsy to get more testing done that was a little more thorough. Some kind of stain testing I think it was to check for bio markers like proteins and enzymes and all sorts of very small things. Those tests came back with markers for some cancers like lymphoma and leukemia. My thoughts were okay.. so im not out of the woods yet I suppose..

They then refereed me to an oncologist! Wait what? I don't have cancer I thought! Why would you do that!? I first met him like early December-ish I think. He actually is the one who gave me the results of the second round of tests from the biopsy. He said that there was still no clear evidence of anything bad. But would like to do a CAT scan of my entire torso w/ oral and IV contrast and more blood tests. Because I had actually started having pains in my side around my spleen, which after a little research on the internet came back showing as a symptom sometimes of cancers! Great.

I had the scan and let me tell you it sucked.. the oral contrast is terrible tasting. Drinking crappy berry flavored chalk with a hint of metallic taste. Then they took a scan with the iodine based contrast put into me through an IV. That was even worse! Made me feel hot and flush all over, my mouth watered like crazy and I could taste it, and it made me so nauseous I felt like I could have puked. Thankfully that feeling didnt last much longer after the test though.

Anyways here's the conclusion of my story cause im tired of typing and need to get back to work haha. The results of those tests were fine and in fact my other lymph nodes had appeared to have reduced in size. Blood tests were clear as well. Still we had no answer to what caused this affliction. The best thing they could give me was to say it could have been some kind of auto-immune disease (no not HIV) more like epstien barr virus.. He then said well only thing left to do it watch and wait for if there are any changes and scheduled me for a follow up in April of 2013.

I had my follow up appointment just last week. I did have some changes since my last appointment though that might have concerned the oncologist. I have lost about 35lbs since January. But not that I wasn't trying to lose weight. I had been exorcizing more regularly and watching what I eat. I was about 200lbs when this started. Now I am floating around 165. Doesn't worry or bother me though. I like it, im in the best shape of my life. But the doc did decide to do another round of scans blood labs and another CAT scan with IV contrast. Im having that appointment on Thursday 4/25/13 for the scan and not looking forward to it. Already had my blood drawn on friday. I'm very much expecting to hear the same story again. Your fine Mr. John Doe, nothings wrong. Oh much like last time eh doc? yup. Cool! So im done with all this? No. Im going to schedule you for a follow up in 6 months. Ugh.. ok.

So that's where I'm at now. Really at this point im only like what 3 months shy of a year since this first came about and its a tiring ordeal. And I don't have anything wrong with me. I couldn't imagine actually having cancer and having to go through this. I should be more thankful that the worst part of this for me is medical bills. Glad that it seems to be finally coming to an end though.

Thanks for reading if you did. I might post back after with my scan results once I get them if anyone cares!


Kurt

Last edited by KiloNovember; 05-01-2013 at 09:53 AM.

 
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Old 04-29-2013, 04:42 PM   #2
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KiloNovember HB User
Re: My last 9 months story and im still clear! New Member

Update from last CAT scan.. Still enlarged lymph nodes but seem to be decreasing in size. Doctor see's no reason for further biopsy and scheduled again for a follow up in August.


 
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Old 04-30-2013, 06:04 AM   #3
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Re: My last 9 months story and im still clear! New Member

Wow! Keep us posted! What sizes are your nodes?

 
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Old 05-01-2013, 09:49 AM   #4
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KiloNovember HB User
Re: My last 9 months story and im still clear! New Member

Searched my records they were as follows. Sorry my original post was way wrong. Apparently my memory sucks haha.

CT scan of the neck on 10/4/2012 showed
Bilateral lymph nodes are seen the largest of which is at level IB Bilaterally the of which is 2.4cm x 1.9cm x 1.1cm. The left measures 2.7cm x 1.7cm x 1.5cm. High right peritracheal lymph node measures 8mm. Right supraclavicular lymph node is 2.8cm x 1.9cm x 2.2cm

Last edited by KiloNovember; 05-02-2013 at 04:20 PM. Reason: Wrong Info! Way wrong!

 
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Old 07-15-2013, 11:04 AM   #5
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KiloNovember HB User
Re: My last 9 months story and im still clear! New Member

Little update,

I have lost a lot of weight. Went from being around 192lbs on 2/25/13 to 149lbs this morning 7/15/13 Few weeks ago I had noticed my lymph nodes in my groin we very hard. Iv never felt them before. It could just be because im very thin now and can actually feel them. They do feel a little big though and appear to be getting larger. I called my doc after noticing them and he had me come in and ordered another CT/Blood labs. A couple days after that I had a bowel movement with A LOT of blood. I had been experiencing a little blood on almost all bowel movements within the last year or more maybe (just a little bit on the toilet paper) but nothing like that. Been having a lot of cramping and bloating since in the last few weeks. Gas and Diahrea, some "normal-ish" stools in between that are very soft and just seem to fall apart into dust. Appetite has gone down big time and feeling very fatigued and tired most of the time. Could just be im not eating much though.

My CT showed my nodes were still enlarged in my neck and chest. Also that my spleen was a little enlarged. He made no mention really of my groinal lymph nodes. The blood work came back all normal. After discussing the gastro problems with him he referred me to a GI. Scheduled me for a endoscopy/colonoscopy this friday 7/19.

What a rollercoaster.. cannot believe im still dealing with this stuff.

Oh PS also I seem to be having some kinda growth on my adams apple.. What the heck is happening to me!? that was bump was a little painful for a couple days but doesnt bother me anymore with pain at least.

Last edited by KiloNovember; 07-15-2013 at 11:05 AM.

 
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Old 07-26-2013, 05:27 PM   #6
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Re: My last 9 months story and im still clear! New Member

Kilo,
If the colonoscopy/endoscopy doesn't show anything, please go back to the oncologist and ask him to do another biopsy and/or go over the previous biopsies with a fine-tooth comb. Also ask about the possiblity of follicular thyroid cancer.

This is not normal. Although you mentioned exercising more regularly and watching what you eat, unless you've dramatically reduced your calorie intake, that's a lot of weight to lose in that amount of time. Please keep after them to find an answer to all of this. And, if you're asked to come back in 4 months, please don't delay it into 6-7 months. This needs to be followed closely and resolved sooner rather than later.

By now I assume you've had the colonoscopy/endoscopy, and I hope nothing bad was found there, but please do keep us posted.

Ruth

 
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Old 07-26-2013, 06:20 PM   #7
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KiloNovember HB User
Re: My last 9 months story and im still clear! New Member

SamQKitty,

Thanks for your post.

I did in fact have the procedures done. They showed I had mild chronic gastritis and an internal hemorrhoid which is what i'm assuming caused the bleeding. They took some biopsies from my stomach and also removed a single sessile polyp (which looked benign to the doc). I have yet to hear back about the biopsy results at all. But they said they forwarded my results to my referring oncologist.

The onc did actually say that if these procedures didn't show anything definitive about my lymphadenopathy then he would probably likely want to do another biopsy.

Again thanks for you post and concern, I appreciate it.

 
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Old 07-27-2013, 09:16 AM   #8
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Re: My last 9 months story and im still clear! New Member

Well at least that's a bit of good news...nothing bad in the colonoscopy. Whew!

So now you and the doctors have to pursue answers to the other issues. Good luck, and please let us know what happens.

Ruth

 
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Old 08-01-2013, 10:44 AM   #9
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KiloNovember HB User
Re: My last 9 months story and im still clear! New Member

Got the biopsy results from the tissue samples taken during my colo/endo. Its all clear

I got a copy of the last CT scan of my neck/chest/abdomen and pelvis w/ contrast i had done on 7/3/13.

For some reason on all my CT scan reports they always say under clinical history Large Cell Lymphoma.. I have never been diagnosed with Lymphoma (just think its funny). I read something I hadnt been told or knew about and i found it curious and wanted to see if anybody could help explain. The radiologists impression reads as follows.

"As compared to the prior examination, there is increased prominence of soft tissue density in the anterior mediastinum with calcifications. although in transverse diameter, the soft tissue lesion is similar in size, however in anteroposterior diameter, it now measures 17.8mm (1.78cm) previously measuring 8mm (.8cm). This could represent the thymus gland with rebound. However close surveillance is recommended to exclude lymphoma.

Again identified is a 14mm(1.4cm) x 9mm(.9cm) node in the right carotid sheath, now measuring 14 x 9 mm previously measuring 13 x 8.6. Prior surgical clips in the left neck."

SO thats what the radiologist had to say, Im just curious about the enlargement of the anterior mediastinum. Does anyone have any knowledge or opinions? I did a quick google search of Thymus glad rebound and saw that its common in patients who have had chemo etc etc but i have never had chemo.

Thanks for any replys!

Last edited by KiloNovember; 08-01-2013 at 10:49 AM.

 
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Old 08-01-2013, 11:37 AM   #10
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Re: My last 9 months story and im still clear! New Member

Kilo,

Did you know there's a lymphoma board under cancers? You might want to post your story over there, as you probably can find people who are much more familiar with lymphoma than I am. It just seems to me that this has gone on for a long time without resolution or treatment, but that may be common with lymphoma - I just don't know.

Good luck,

Ruth

 
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Old 08-06-2013, 06:36 AM   #11
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big andy HB User
Re: My last 9 months story and im still clear! New Member

Quote:
Originally Posted by KiloNovember View Post
*warning large wall of text of my story and terrible grammar*

Thought this would maybe help some people who had simmilar symptoms of myself. As I remember scouring the interenet for anything I could find and testimonials of others. Alls I had was a large firm painless lump under my left jaw line. If you want to know more about my story then read on!

My names Kurt and Im 25 years old. I am in the Marine Corps reserves and slave to a unappreciative office job in my civilian side life. A little background about my family. There is a bit of cancer history in my family. My mother had breast cancer, my grandmother on my dads side died of pancreatic cancer, and If i remember correctly my grandfathers both died of cancer. Thought this would maybe help some people who had simmilar symptoms of myself. As I remember scouring the interenet for anything I could find and testimonials of others.

I discovered a firm and Painless lump presumably a lymph node in the left side of my neck under my jaw back in July of 2012. Thought nothing of it and decided to just wait and see if it would go away on its own as I had no other symptoms of anything at all. It didn't and only got larger and harder. So I went and reluctantly saw a Doc because my girlfriend was nagging me about it (FYI im not the type to run to the Doc unless im bleeding profusely from a giant laceration, have broken bones, or any other kinda obviously serious issue i cant resolve myself..) But I did start goin nuts and researching everything it could be.. cancer cancer cancer! Lymphoma! D:!

The Doc sent me to get some blood tests and they looked fine. So to discover the true origins of this mystery lump they refereed me to a surgeon for a possibly biopsy. She first did an ultrasound of my lima bean / large almond feeling friend. Confirmed that yeah it was enlarged. She then said she would like to biopsy and remove the whole lymph node cause apparently needle biopsies suck for the most part and sent me to get my first CAT scan w/o contrast to get a good idea of my anatomy before surgery and to see if other nodes were enlarged as well. Got the scan done, it was harmless and fast. The results did show that I had multiple other nodes even larger then my original discovery in my neck and shoulder area ( was a little bit of a shock and then started wondering okay... maybe this isnt just nothing).

I then scheduled my surgery for the next week.. Oct 12th I do believe it was. Was a little nervous cause I have never had surgery except my tonsils removed when I was like 4 but i couldn't remember that anyways. So it was all pretty new to me. I had my surgery and It wasn't that bad. Maybe like an hour and a half or so long im guessing. Neck was obviously sore swollen and tender. Had a little trouble swallowing for the next couple weeks too. The next week I got the results, and again there was nothing conclusive to any kind of cancers or diseases! No mean cancer cells just chillin in me. The report said it was some kind of Follicular B-Cell Hyperplasia though. Yay good news! Right? But still the question remains what the heck is going on then?? They sent the remaining tissue from my biopsy to get more testing done that was a little more thorough. Some kind of stain testing I think it was to check for bio markers like proteins and enzymes and all sorts of very small things. Those tests came back with markers for some cancers like lymphoma and leukemia. My thoughts were okay.. so im not out of the woods yet I suppose..

They then refereed me to an oncologist! Wait what? I don't have cancer I thought! Why would you do that!? I first met him like early December-ish I think. He actually is the one who gave me the results of the second round of tests from the biopsy. He said that there was still no clear evidence of anything bad. But would like to do a CAT scan of my entire torso w/ oral and IV contrast and more blood tests. Because I had actually started having pains in my side around my spleen, which after a little research on the internet came back showing as a symptom sometimes of cancers! Great.

I had the scan and let me tell you it sucked.. the oral contrast is terrible tasting. Drinking crappy berry flavored chalk with a hint of metallic taste. Then they took a scan with the iodine based contrast put into me through an IV. That was even worse! Made me feel hot and flush all over, my mouth watered like crazy and I could taste it, and it made me so nauseous I felt like I could have puked. Thankfully that feeling didnt last much longer after the test though.

Anyways here's the conclusion of my story cause im tired of typing and need to get back to work haha. The results of those tests were fine and in fact my other lymph nodes had appeared to have reduced in size. Blood tests were clear as well. Still we had no answer to what caused this affliction. The best thing they could give me was to say it could have been some kind of auto-immune disease (no not HIV) more like epstien barr virus.. He then said well only thing left to do it watch and wait for if there are any changes and scheduled me for a follow up in April of 2013.

I had my follow up appointment just last week. I did have some changes since my last appointment though that might have concerned the oncologist. I have lost about 35lbs since January. But not that I wasn't trying to lose weight. I had been exorcizing more regularly and watching what I eat. I was about 200lbs when this started. Now I am floating around 165. Doesn't worry or bother me though. I like it, im in the best shape of my life. But the doc did decide to do another round of scans blood labs and another CAT scan with IV contrast. Im having that appointment on Thursday 4/25/13 for the scan and not looking forward to it. Already had my blood drawn on friday. I'm very much expecting to hear the same story again. Your fine Mr. John Doe, nothings wrong. Oh much like last time eh doc? yup. Cool! So im done with all this? No. Im going to schedule you for a follow up in 6 months. Ugh.. ok.

So that's where I'm at now. Really at this point im only like what 3 months shy of a year since this first came about and its a tiring ordeal. And I don't have anything wrong with me. I couldn't imagine actually having cancer and having to go through this. I should be more thankful that the worst part of this for me is medical bills. Glad that it seems to be finally coming to an end though.

Thanks for reading if you did. I might post back after with my scan results once I get them if anyone cares!


Kurt
Hi kurt sorry to her about the ordeal you are having but lets hope its just a passing problem and it never shows up again I have cancer and have been to hell and back this last 12 months but now im in remission and hope to stay that way.I hope you never have to do what I have had to go through but it has been a good result for me and the one thing it does to you having a scare or worse finding out you do have cancer it makes you look at life in a different way altogether But stay strong and dont think about the worse stay positive good luck and keep us posted

 
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Old 08-06-2013, 08:29 PM   #12
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KiloNovember HB User
Re: My last 9 months story and im still clear! New Member

Seriously I think this whole process is making me a full blown true hypochondriac. My anxiety and depression are soaring through the roof. I've been seriously thinking about canceling my upcoming doctors appointments. I'm tired of feeling crazy for thinking I don't feel normal and there are no answers and no help. I'm just over the whole thing.

 
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Old 08-07-2013, 04:40 AM   #13
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big andy HB User
Re: My last 9 months story and im still clear! New Member

Quote:
Originally Posted by KiloNovember View Post
Seriously I think this whole process is making me a full blown true hypochondriac. My anxiety and depression are soaring through the roof. I've been seriously thinking about canceling my upcoming doctors appointments. I'm tired of feeling crazy for thinking I don'tl normal and there are no answers and no help. I'm just over the whole thing.
It is normal to be scared and upset down right ****** to.All I can say is stay strong .And I hope your next scans come back clear

 
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Old 08-13-2013, 01:44 PM   #14
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KiloNovember HB User
Re: My last 9 months story and im still clear! New Member

So just met with a second doc yesterday to see what they thought and my normal onc i have been seeing.

This new doctor would like to look at the slides from the biopsy herself and with the pathologists there at that hospital and then make a decision about what they think.

My regular onc, since now having reviewed my Endo/Colo biopsies and seeing that seems normal. Has been noticing an increase in my lymph node size and number of them perking up. He is finally getting off his butt and looking into this. He wants another biopsy done. Yay! This time from the nodes on my right side. An excisional biopsy again. Cool I can have matching scars. Collect the whole set! So i should be getting together with the surgeon again for that soon. He is also going to refer me to an infectious disease specialist to look into that aspect of possible causes. But if that clears out and the biopsy shows reactive again.. There is a possibility of going a little more invasive with a biopsy of this "mass" that seems to be growing in my anterior mediastinum.

But as usual the word being thrown around is lymphoma lymphoma lymphoma! At all my visits..

Exciting days to come!

 
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Old 08-13-2013, 01:50 PM   #15
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Join Date: Apr 2013
Location: Orange County, CA
Posts: 18
KiloNovember HB User
Re: My last 9 months story and im still clear! New Member

So just met with a second doc yesterday to see what they thought and my normal onc i have been seeing.

This new doctor would like to look at the slides from the biopsy herself and with the pathologists there at that hospital and then make a decision about what they think.

My regular onc, since now having reviewed my Endo/Colo biopsies and seeing that seems normal. Has been noticing an increase in my lymph node size and number of them perking up. He is finally getting off his butt and looking into this. He wants another biopsy done. Yay! This time from the nodes on my right side. An excisional biopsy again. Cool I can have matching scars. Collect the whole set! So i should be getting together with the surgeon again for that soon. He is also going to refer me to an infectious disease specialist to look into that aspect of possible causes. But if that clears out and the biopsy shows reactive again.. There is a possibility of going a little more invasive with a biopsy of this "mass" that seems to be growing in my anterior mediastinum.

But as usual the word being thrown around is lymphoma lymphoma lymphoma! At all my visits..

Exciting days to come!

 
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