Desmoid tumor

[enot]

It is being going on for almost two years. First US showed mass in the rectus sheath area. CT was performed later with no confirmation of the mass. Since than I had 3 more US done with same results as a first - mass in the same area and relatively same size (no obvious changes). Plus two MRI with no evidence of that mass. Last US suggested that it could be a desmoid tumor. I am scared, because in the mean time my symptoms got worse. Pain and heat and burning sensation in the left lower quadrant much stronger and present almost every day. Pain now radiates to stomach, sometimes right side, in to the left hip are. I have better days, when pain is mild and worse, when I am looking for the painkillers (which are not helping). Also I have heartburns and bloating (passing lots of gas) and sometimes feel like I have column of the air in my throat down to the stomach. What these contradicting tests mean? Is it possible that MRI and CT can't pick the mass up? How to find out what I have, what steps I should be taking?  I also had laparoscopy done, and Dr. Goodman  - you were right, they didn’t see anything. And I can’t seem to convince my doc to do biopsy, as you suggested. I will be seeing surgeon again in three weeks. I would like to be better prepared and know what to ask.  Please, give me your advice. I would really appreciate that.

[snowiscool]

Hi,

Let me help you out as many people do not know enough about diagnosing desmoid tumours!  As you probably know 1 people in 3 million have them - lucky you!  I had a desmoid tumour several years ago - right anterior abdominal wall and ended up having 3 surgeries to get rid of it as they are tricky little buggers to diagnose and remove as they blend in with surrounding tissues which is WHY they DO NOT SHOW UP ON MRI's or CT scans!!!

The exact same thing happened to me.  I discovered a finger like lump in my abdomen only when standing (which is another weird thing about these tumours - don't show up lying down).  My doc sent me for US which showed an unexplained mass (sound familiar).  Then i was sent for MRI and CT which SHOWED NOTHING as they DO NOT SHOW UP ON THESE SCANS!!!!!!!

My surgeon did a biopsy and could not discover what it was in Australia as they are so rare.  Had to go to Japan or Tokyo or somewhere before they could work out what it was.  Then he found out and told me all about them and how they blend in with tissue making it difficult to diagnose and treat.  He did major surgery removing 2 layers of stomach muscle along with tumour BUT as he couldn't see it properly even when in there he didn't get it all first time!!  I had to go back for second lot of major surgery and he got it then.

So please do not listen to people who tell you that it is not a desmoid tumour because it doesn't show on MRI or CT.  Get a biopsy and go from there.

Good luck
From the other 1 in 3 million girl!

[Annekathryn Goodman, M.D.]

Hi There
the best thing  to consider is to get a referral to a general surgeon in your area who has expertise in desmoid tumors. That doctor will then review your scans and do an exam and help guide you as to the appropriate next step.

thank you smowiscool for your input!
best wsiehs

[Annekathryn Goodman, M.D.]

Hi There,

You have had a really good evaluation.
I am not sure why different tests are showing different things. Let's try to break this down:

Ultrasounds all show a mass in the rectus sheath.
A CT scan and MRI does not show abnormal findings.
A laparoscopy shows a normal peritoneal cavity (inside the abdomen).

The rectus sheath is an area of the abdominal wall that encloses a muscle, the rectus abdominus muscle. This area is outside the abdominal (peritoneal) cavity. If you are having a growth in this area, I would expect that the inside of the abdomen (peritoneum) would be normal. A laparoscopy does not look at the wall of the abdomen. A laparoscope goes through the wall to look inside .

Your symptoms of heartburn and bloating are also not consistent with having a mass in the rectus sheath.

With a normal CT scan and laparoscopy, your symptoms may reflect a dynamic process of irritable bowel syndrome or GERD gastro-esophageal reflux disease.

This all does not sound like a gynecologic condition. It does sound like this has been very distressing.

I would suggest going back to see your primary care doctor. Bring all your very good testing and see if your doctor can help you put this all together.

If your really have a mass in the rectus sheath, your doctor may want to refer you to a general surgeon. If the ultrasound is actually an overinterpretation of a normal variant of a rectus muscle (which it may be with the normal CT and MRI), then focusing on your gastrointestinal distress with dietary changes may be the next step.

best wishes to you