possible ovarian cancer -- understanding the language

[woebegoner]

I guess I should introduce myself before asking my (admittedly very panicked) questions. I'm a 44 year old woman with possible ovarian cancer that was found as an incidental finding on both an MRA and CT scan. (I've never had any children.) I was hospitalized for 3 months last year (I've had Crohn's disease for 20 years) for a blood clot that, long story short, broke into several pieces and nearly killed me (along with sepsis). One of those clots lodged in the artery that supplies blood to your intestines (which my surgeons didn't realize until they opened me up, and by then it was too late). All my intestines had died, so they removed everything. I only have a duodenum and a tiny portion of my jejunum, just enough for them to have inserted a permanent J tube for stomach drainage. So I am now TPN-dependent (via a PICC line) for life; I don't eat food since I have no intestine to digest the food and no colon to create waste. The 45 days I was hospitalized last year I had 6 CT scans. At no time were any masses seen in my pelvic area. Last week my internist scheduled me for an MRA scan to make sure I didn't have any blood clots lurking (even though I'm on blood thinners for life) and to check for any occluded veins/arteries. The good news is no clots or occlusions were found. The bad and surprising news was they saw this huge 11.5 x 11.5 cm mass in the vicinity of my ovaries. Hence the need for the CT scan. My internist told me it could be just a large fluid-filled mass as a result of last year's extensive surgery or it could be an ovarian malignancy. When I pressed him on what he thought it was, he said he was leaning toward it being an ovarian malignancy, but didn't go into details. He set me up to see a gynecologist on Sept. 11th (the soonest I can get an appointment) and after that I'll need a needle biopsy and then laparascopy(?). My gastroenterologist, however (my doctor of 11 years who has treated me for my Crohn's disease) thinks it's unlikely to be cancer, esp. since I had all those CT scans just 9.5 months ago and there were no masses then (I guess his reasoning is for something to go from nothing to the huge size it is in only 9 months would most likely be noncancerous?; I don't know). I picked up a copy of the radiologist's report from my CT scan (and a CD of the images) on Friday, and I completely freaked out when I read the report. Half of what is in the report, neither my internist nor my GI doctor brought up on the telephone. Both doctors are on vacation until the week after next, as is my new gynecologist (which is why I have to wait until the 11th to see her). I am going CRAZY not understanding the language in the report, which is why I am posting here. Can someone "detangle" the report for me? (adenopathy? solid elements? septations? perioartic?) And also answer me frankly if, based on your reading of the report and your own experiences, how likely it is that this "mass" (or masses) is ovarian cancer. Thanks in advance for any advice/help anyone can offer.


CT of the abdomen
--there is a question of mild adenopathy at the level of the left mid-kidney
--there are thought to be two contiguous lymph nodes measuring each approximately 0.9 cm (I have NO idea what this means; neither doctor brought this up)

CT of the pelvis
--there are two contiguous low-density, large fluid-filled masses filling the pelvis (what does low-density mean?)
--septations and areas of scattered solid elements are thought to be present (what does that mean?)
--the right large cystic mass extends to the L5-S1 level and the left-sided mass extends to the S1 level. This may be part of all one large mass, and when measured together, these two large cystic masses as measured in the mid to lower pelvis measure 11.5 x 11.5 cm
--In view of the characteristics of the masses, ovarian malignancies would be primarily considered
--I believe the bladder is decompressed (whatever that means); to be totally sure it may be helpful to administer contrast within the urinary bladder in a retrograde fashion to fill the bladder and distinguish the bladder position in regard to the masses
--The mass or masses have a CT density of approx. 15 CT HU (whatever that is) consistent with cystic fluid, but as noted, do contain areas of septations and solid elements

IMPRESSION:
--Very large pelvic low-density cystic mass containing solid elements extending out of the pelvis into the lower abdomen. Possibility of this representing ovarian malignancy should be further considered. Very large cystadenomas of the ovary can sometimes present as a similar appearance.
--Question mild adenopathy in the left periaortic area

[Searching48507]

I concur with Teresa and the other ladies.  You must see an Oncologist/Gynecologist.  They have more years of training and are the best suited if you need surgery.  
Peace,
Karen

[Teresa222]

I think you may have missed one part of the recommendations some of the ladies are making to you: See a ONC/GYN, not just a GYN.  You need someone who specializes in this disease, even if you don't have it.  You need the most experienced doctors in the treatment of Ovarian tumors so that you can say you did the best you could do in the offset of this disease. That is...if you have it.  I hope you don't. God Bless!
Teresa

[woebegoner]

Thanks so much for your responses. I do indeed have an appt. with a new OB/GYN, but not until Sept. 11th. It was the soonest I could get anyone to see me. (I had to move back to my hometown after last year's medical crisis, so I haven't lived in this area in over 10 years and I don't know any doctors up here. So I made the rounds of friends/family to see whom they would recommend, and the person I'm seeing is someone most recommended. There was a male OB/GYN who could have seen me this week, but 5 different people told me to 'steer clear' of this guy. He's apparently got a really lousy bedside manner--very abrupt/borderline rude, impatient, somewhat unsympathetic--the very last qualities you want in a doctor, esp. when it comes to a life-threatening illness.) I contacted someone who teaches ultrasound and emailed him the report and this was his reply: "Cystadenomas are benign tumors that can mimic ovarian cancers.  Because of the internal components of your masses and their size, the radiologist is more concerned about them/it being cancer.  Like I said, biopsy or surgical removal is your best option. There was no mention of metastasis in the report.  That is good news.  I am not sure if the adenopathy is related to these masses, but the lymph nodes are still small (usually enlarged nodes are considered to measure over 1 cm as a general rule)."

But that leads me to those other questions--just what are "solid elements" and why are they causes for concern? I tried googling the term (and septations) and couldn't find any kind of real information. Are "solid elements" and "septations" characteristics of a malignant versus benign tumor (and thus why my internist is leaning toward the mass(es) being cancer)?

I'm supposing my OB/GYN will set me up for a needle biopsy, but I don't know what will happen beyond that. I'm assuming the mass will have to be removed, malignant or not, because of its size and because it causes major pain (I'm thinking the balloon inside me, which keeps the J tube from falling out, is 'butting up' against the mass or something). The problem with that is I am a very high-risk surgical candidate because of everything that went wrong last year (which even my surgeons still don't have answers for) and because of the blood thinner I'm on. I'd have to go off it for surgery, which increases dramatically my chances of springing new blood clots. I'm a non-candidate for chemo or radiation because I'm considered 'medically fragile.' Either or both would likely kill me. Talk about being stuck between that rock and a really really hard place...

To rcarver--I'll keep positive thoughts in my head for your outcome. And you're right, the waiting part just s*****!

[rcarver]

I work in radiology and I have to tell you that the radiologist will almost always report that malignancy cannot be ruled out because until a biopsy is done, you don't know.  They are covering their butts.  It's better to tell you that it's possible you have cancer and you don't than to tell you that you don't and you do...does that make sense?  Also, a cystadenoma is always benign.  I am currently going through a similar situation---I am 29 and 4 mo ago I had a normal u/s except for some fluid in my pelvis.  Now I have a 7x6cm mass on my left ovary and my ob/gyn says she has never seen one look like that.  Even the radiologists that I work with were stumped and told me it could be a ton of different things.  Try not to get too worked up over the report.  A lot of that stuff sounds worse than it is.  However, you will be in my prayers...it sounds like you have had enough to deal with as it is.  Also....yes--get to a GYN ASAP! You never want to play around with something like that just in case.  It's the waiting part that *****.  My surgery is in 2 weeks and I assure you it will be the longest 2 wks of my life b/c  I won't know until then if it is malignant or not.

[marie3B]

Dian is right.  It needs to be investigated by a gyn/onc.  This does not mean we think it is cancer.  It means that if it is, a gyn/onc is best prepared to remove it safely without rupture to reduce the spread of cells.  I am sorry that you have had so many health troubles to deal with.  I hope this turns out to be benign and of no further trouble to you.  Marie

[dian07]

I am not a doctor and wouldn't want to give you an incorrect interpretation of your test results.  I would, however, highly recommend you find a gyn/oncologist for further treatment.  This is the person you want to go through this with you.....this is their arena of specialty.  Please do insist on a referral to a gyn/oncologist......it is so important.
Peace.
dian