Biopsy results in!

[ellenkerr]

Well, the biopsy results are back.  I got a copy of my report but haven't talked to my rheumy yet.  The diagnosis says

Fibrosis with acinar loss consistent with chronic sclerosing sialadenitis. No lymphoid aggregates are identified.  The

 features are not diagnostic of Sjogren's but may represent the end-stage process of a chronic sialadenitis.  Clinical

Correlation is needed.

So what does this mean...no Sjogrens but some kind of sclerosis?   Any thoughts on this?

[olmphoto2]

This is associated with Sjogren's:

http://www.merckmanuals.com/professional/ear_nose_and_throat_disorders/oral_and_pharyngeal_disorders/sialadenitis.html

The pathologist is only saying that you can't definitively pin this on Sjogren's.

[Suslew]

That is exactly what my lip biopsy came back as.  My doc said it could be sjogrens, which she is convinced I have based on other symptoms/labs, but it could also be the result of a chronic viral infection.

 It's frustrating, she was planning on doing a steroid pulse study to see how much was needed to reduce symptoms, but now she says that's not a good idea because the steroids can reactivate or worsen the viral infection making symptoms much worse.  Seriously, the fatigue is so horrible that I'm willing to risk it and I may talk to her about this at our next visit. 

[Carolina]

Dear Suslew:

This is what I found when I Googled your possible diagnosis:


Chronic sclerosing sialadenitis is a totally benign inflammatory lesion, and until now, there have been no reports of malignancy. In fact, chronic sclerosing sialadenitis has often been removed, and no additional treatment has been required (14). This disease is rare and most commonly occurs in the submandibular gland (15,16). We present a very rare case of chronic sclerosing sialadenitis, which affected the parotid gland as a solitary mass.

This is the link:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3216182/

The NIH is the United States National Institutes of Health with funds most basic research in the United States.

I hope this helps.

Keep us posted.

Hugs

Elaine aka Carolina

[Suslew]

Hi Carolina,

Thanks for the info, I had read it already ( a couple of times so as to retain it - lol)  My impression is that often it is found in the large salivary glands such as this study the submandibular and parotid, is benign and mimics tumors.  In the case of Mizzy and myself, it's in the minor salivary glands and I haven't found any good, scientific studies yet.  They are either about the large glands or a description of the types of sialadenitis.  Ugh. 

I will definitely keep you posted as I learn more.
Best,
Suslew

[gurs]

Ok..so this is a lesion? what cause the lesion then? I still wouldnt rule out Sjogrens either..

gursie

[ellenkerr]

In my case I didn't have a lesion.  I've had a very dry mouth and eyes for almost 20 years.  I don't recall

ever having swelling or pain in my parotid of submandibular glands.  My eye doc never tested me until I

 asked him to.  We both knew my eyes were dry and he knew I had to use drops.  The Schirmer test results

 turned out to be "0" which somewhat surprised the eye doc.  It was only through the biopsy that I found

 out that my minor salivary glands were pretty much non existant.  The disease had been going on so long

that it was considered "stage 4" or end stage  and the glands had become dead, scar tissue from fibrosis.
 
Most literature refers to chronic sclerosing sialadenitis s "kuttners tumor", a fibroinflammatory disease

 of the salivary glands.  It doesn't mean that I don't have Sjogrens, but they classify this condition as one

of the IgG4 diseases.  From what I understand, IgG4 can effect other organs too.  It makes me wonder

 if my messintary and lung nodes are due to this.  The article I read said that these diseases respond

well to steroids.  I feel like if they had performed the salivary gland biopsy 15 years ago, it would have

 been positive for sjs.  The tissue sample couldn't be used to get a focus score for sjs because all the

 glands had atrophied.  My other salivary glands have not been tested yet, but they probably

went first.

[BKreader]

Hi! I am new here. I just had a very similar experience to your's Mizzy. I had my lip biopsy results come back 2 days ago and the doctor said they could not confirm Sjogren's because the sample ( which was pretty large) was scar tissue. My doctor said this is very unusual but can be indicative of Sjogren's. When trying for a second sample, she was not seeing any glands so she stopped not wanting to put me through the pain of another bad sample. My Rhuemy wants do some other work up on me. Not sure what. I'm a little nervous. What (other than Sjogren's) can cause scarring and tissue death of the salivary glands? Later in the day, I had the Schirmer's test which confirmed my dry eyes. I also have +ANA speckled patteren but SSA & SSB were neg. My eye doc said he was giving me a clinical diagnosis of Sjogren's. I am concerned that I didn't ever realize I had a problem with my salivary glands since I occasionally drool when I sleep. I guess one parotid gland is hardly producing anything. I have had issues with systemic lymph swelling off and on for months now. I am concened about the connection to lymphoma. Mizzy please let me know what you discover.

[irish]

I am just going to add a few things knowing that lip biopsies are notoriously hard to assess---at least for some pathologists and docs.

The way I have understood it, the lip biopsy is done and the important thing is that the doc is able to get a good sample of tissue that contains salivary glands. The criteria for sjogrens is that there are a certain number of glands in a specified area of tissue. I think that the number of these certain cells in the specified area goes from 1-4 or that is how they numerically determine whether it is sjogrens.

That is the best I can explain my understanding at this time of night. Anyone else have anything to add. My pathology report is very short and sweet with a number. Irish

[anita]

The grading of biopsies is as follows:

It is to look at the lymphocytes, histiocytes, and plasms cells present (NOT salivary glands).  Although, they look at the condition of the glands as well--but that is NOT the determining factor for diagnosis.  They determine how many focuses are present within a 4 mm sq area.  **A focus= an aggregate of 50 of more lymphcytes, histiocytes, and plasma cells.

Grading: (lymphocytes, histocytes, and plasma cells)

0    absent
1    slight infiltrate
2    moderate infiltrate or less then one focus**
3    one focus present
4    more then one focus present

Anything graded above grade 2 is positive for Sjogren's

This is from the Greenspan, et al  " The Histopathy of Sjogren's Syndrome in Labial Salivary Gland Biopsy", 1974

Mine was done at Johns Hopkins and this scale was printed right along  with my details results of what they found and how significant the lymphoid activity was.  It's scary to think that some are getting result with just a positive/negative wording and NO explanation or details of what was found.  I would demand to see the scale the pathologist used.