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How long for a diagnosis?

Caralynn
Posts: 5
Joined: Sep 2017

Hi, I've been a member of this group for a few months since i started my evaulation process for a swollen neck lymph node (submandibular) on the left side. I've had blood work, so much blood work, every time its perfect. The only real symptom I have are night sweats. I've had a bone marrow biopsy, nothing in the bone marrow, I've had a CT Scan, it showed 2 small nodes on my lung, but they're not concerned about them because they're only measuring 6mm. I've had a FNA of the Lymph Node, it was reactive and the only markers that came back 100 positive were the C45, C19 and C20. I've had a colonoscopy because of rectal bleeding, that came back normal. I was recently admitted into the hospital for emergency surgery about 2 months ago for a 5cm cyst that was on my ovary, it came out of nowhere, i just had the CT done 2 weeks prior and it wasn't there. I lost my right ovary because it was tangled in the ovary. This all started about 6 months ago. And since I've been so stressed just wanting them to tell me i'm fine, or there's something wrong. I just had my follow up UltraSound of the node in my neck and its bigger, only by 1 cm, but now they are having me do an UltraSound guided Biopsy on tuesday so they can do a Thyroglobulin washout to look for thyroid cancer in the specimen. I just feel like this seems a little extreme, has anyone else undergone such extensive testing? And if so, at the end of it was everything okay or were they right in doing all this testing to find there really was a tumor or cancer somewhere causing the lymph nodes to enlarge? If this test comes back negative my ENT says they're going to have to remove the whole lymph node because they need to find out what is the cause of the enlarged lymph nodes.

jowith4kids
Posts: 3
Joined: Nov 2017

my right subandibular is size of a large prune,ive no idea how long its been there...but ive had alsort of symptoms. i had a ultrasound on my stomach in august all bloods come back normal waiting to be referred...the lump is hard doesnt move!! im 29 four kids...i dont want to die!! i sound so stupid i know but any lump is scary...

elle2008
Posts: 2
Joined: Jan 2018

Don't be like my dead husband.  He was 28, we have four kids, and he refused to see the doc.  It got to the point that he couldn't get rid of the elephant in the room.  I got the diagnosis via a phone call.  He heard me and he cried.  And that broke my heart.

jowith4kids
Posts: 3
Joined: Nov 2017

Caralynnn whats the overall outcome ??x hope your well x

thahn19's picture
thahn19
Posts: 4
Joined: Jan 2018

Unfortunately Caralynn, I went through something similar. It took about 9 months after symptoms started before I was diagnosed with stage 3 lymphoma. I went to so many doctors and got so much bloodwork, but lymphoma doesn't usually show up in any bloodwork. They even did a needle aspiration biopsy of swollen nodes in my neck that came back negative before surgically removing a whole node to biopsy, which was when they finally figured out it was cancer. In my opinion, I would have wanted the surgery earlier just so I couldv'e known and avoided all the appointments and tests (and the ENTs do a wonderful job with making the scarring as minimal and as natural-looking as possible) Since there are no other ways to be sure, even though it seems extreme now, the surgery is probably your best option if you want to get a clear answer... Wish I had better information, hope it turns out alright! <3

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Carolyn,

This is a somewhat random response to your various points and questions:

--  It is not uncommon for the road to Lymphoma diagnosis to be long and winding.  You are correct: blood panels often reveal nothing, as in my own case.  Nonetheless, do continue to get them, since occasionally they will sound an alert, and they are the easiest and cheapest way to monitor things. But your negative CT does suggest that if you have lymphoma, it is incipient and low-grade thus far. 

-- Aspirational biopsies ("needle draws") frequently show false negatives.  Only an excise biopsy (cutting out the whole node) is of routine high accuracy.

-- I had a  lung spot followed for two years after complete remission from HL, largest size ever was 4mm, so I am read in that process. 6mm is still very small and probably of no consequence; my pulmonologist told me that most people have these, but are unaware, since most people never get CTs.  And the vast majority are benign.  Aside:  these tumors you have are currently too small for removal via biopsy, even if it were clinically advisable to do so.

-- What I find most worrisom is your ovarian issues.  Very few things cause nights sweats, such as you have been having:  One cause is Lymphoma, usually Hodgkin's type, such that night sweats are a hallmark of Hodgkin's (rarely but in some cases NHL will also cause night sweats).   The other routine cause is hormonal, such as would be induced by ovarian disease and/or removal (in effect, menopause, whether caused by normal aging or ovarian disease).

I would be most aggressive in getting the ovarian situation resolved, as well as insisting on excisional biopisies of the neck region, such as your ENT is currently requiring. He is right about this.  

max

 

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