Results of my gyn/onc appt. on Monday

Hi Pinky

glad for you good results.  Although I know how you feel about something that has grown even by .1 cm.   I am in the same situation and feel a little uncomfortable about the whole thing. Although my mass has grown and the SUV readings are mildly positive but keep increasing.   No one is saying what to do.    I would like to have it removed while there are clear margins  since it is near the vaginsl cuff rectum and bladder.   i have had this mass since 2011 and it has been increasing since January (now 6 x  1.9 cm) previously (2.6 x 1.6)

i only told you about my scenario so you  know that it is not unusual to wait and watch.   Also good news with your CA 125.   It's good you had a CT scan so you know nothing else is going on in there 

a lot of these masses are soft tissue masses.  I had one removed prior to this.   I did have this one biopsied  it was negative but they biopsied the posterior part.  The SUV increase is in the anterior part.   

hang in there!   

Kathy

It happened to Me said:

Pinky - quick question

You said you have a mass on your paracolic gutter.  Did you have some on your paracolic gutter at your first surgery?  When I had my surgery in July, 2013, they found cancer on my paracolic gutter, on my left ovary, a pea-sized implant in the back of my pelvis.  The tumor was found in the uterus.  I have UPSC  Stage IIIA  Grade 3.   I was just wondering what they found at your first surgery and then what treatment did you have for being stage IV.  You are doing super for being NED 4 + years.  Keep fighting like a girl.  Does it bother you to wait knowing you have that inside you?    Just curious.  Did they tell you that UPSC is slow growing?   That's what they told me.   Thanks for sharing.

Jeanette

Jeanette and Pinky, you have both mentioned the paracolic gutter. Where is that in your body? Pinky, I hope whatever that mass is, it turns out to be, like Kathy has mentioned, a soft tissue mass that is not cancerous.  You have done incredibly well and now are approaching your 5 year anniversary.  I wish only the best for you!

Cathy

Kaleena said:

Definition

Cathy:

Here's what I found about that since I didn't know either:

Paracolic Gutter:   either of two grooves formed by the peritoneum and lying respectively lateral to the ascending and descending colons

Paracolic gutters are open areas between the wall of the abdomen and the colon. These gutters are used to drain infectious material away from the essential internal organs. There are two paracolic gutters in the body, the right and left lateral paracolic gutter. This abdominal space may also be referred to as the paracolic recesses or the sulci paracolici, but is different from the paramesenteric gutters.

 

 

Both paracolic gutters run laterally along the back side of the abdominal wall and are situated between the abdominal wall and the outer margin of the colon. The right lateral gutter is much larger and allows for greater drainage than the left gutter. It runs along the right side of the abdominal cavity and begins at the ascending portion of the colon from the right hepatic flexure, or the point where the colon turns from the ascending colon to the transverse colon. This gutter then continues downward and ends below at the cecum and the terminal ileum, or the part where the ileum attaches to the cecum. The right paracolic gutter is continuous with the perisplenic space or area around the spleen.

Kathy

I had to look it up too.   That's a good explanation.  Thanks Cathy.

Jeanette

pinky104 said:

My First Surgery

 I apologiize for not having answered everyone right away.  I've had a busy schedule and haven't had a chance to get back on here for a couple of days. 

Regarding your questions, Jeanette, my ob/gyn had found a "big, ole polyp" on ultrasound, so he'd done a D&C, promising me that polyps are almost always benign. I'd had about 6 cervical polyps and one previous endometrial polyp 10 years before that were all benign.  However, he called me in and referred me to a gyn/onc he recommended for surgery when he found this one to be malignant.  When I called the recommended doctor's office, I was told that he was booked up for awhile, so I took one of his partners, not knowing anything about the guy.  My sister happened to work in a different OB/GYN office and found out the guy I had accepted was a golf partner of the woman OB/GYN my sister was working for, and that he was also supposed to be good.  My original cancer started out in the uterus, then spread to both ovaries (but skipped the tubes), the omentum, which was apparently loaded with it, and a small spot in the small intestine.  It hadn't gone into any lymph nodes.  I had a total hysterectomy, bilateral salpingo-oophorectomy, iliectomy, omentectomy, removal of a bunch of lymph nodes for biopsies, plus had my gallbladder out due to gallstones and the appendix removed for good measure.  I was in the hospital for 6 days until I could get my bowel function back (it may have had something to do with not being able to stomach the hospital's lousy food).  I just had 6 rounds of carboplatin and taxol, 3 weeks apart each.  I refused the neulasta shot as it carried a risk of myocardial infarction, and my younger brother had unexpectedly died of one the week before they offered me the shot.  Instead, I ended up having blood transfusions.  I didn't have any radiation (I was under the impression that my cancer was too extensive for that).  I was told that I was stage IVb because the cancer had gone out of my pelvis.  Three months later, I was diagnosed with hemochromatosis caused by a genetic condition  (it may have caused my brother's death, too, but he almost never saw a doctor). Then I had to have several phlebotomies to get the excess iron out of my system.

Yes, it bothers me to know the mass is growing in me, but on the other hand, I was happy to get my summer vacation.  Two years ago, about a week before our vacation, my husband passed out from dehydration, and got a headache while in the ER.  A CT scan was done to rule out anything more serious, and a mass was found on his skull.  In 2008, he'd had melanoma on the back of his scalp and had been given a 20% likelihood of having it recur, so we'd assumed that was what it was.  After emergency surgery a few days later, we found out it was a benign subarachnoid cyst which was made up of material that looked like fingernails.  It had likely been present since when he was still a fetus when his sinuses (also made out of a similar material) were developing.  We never did get a vacation that year, and I missed my annual trip to Maine all the following year.  Now, when I'm being put off another three months, I realize that I won't be celebrating my October birthday while in the hospital, so that makes me happy.  It may end up ruining my holidays, or it may be put off until some time after them either due to scheduling or due to the mass' not having grown enough to be located during surgery.  It does scare me a bit when I see how fast the tumors of some of the other women on this discussion board have grown.   I think I remember seeing that more than one said their tumors had tripled in 6 weeks or so.   

I was never told this was slow-growing.  In fact, I was given the opposite impression, because of it's being such an aggressive cancer.  However, I suspect I had mine many years before it was diagnosed originally.  I used to suspect something was wrong, but thought I had celiac disease when I learned my mother had that.  Tests came out negative.  I was told many, many years before my diagnosis that the diarrhea I was getting before work every day was from irritable bowel, and that made sense since I used to get diarrhea before exams in high school and college.  Funny thing how it stopped after my cancer surgery.

Thank you, Kaleena for your explanation of the paracolic gutters.  I know Wikipedia isn't supposed to be a reliable resource, but I did find a diagram of paracolic gutters on there with a description of them.  I found another site that said these run on either side of the spine.  I guess that's why my gyn/onc is going in through my side.  I was worried that the incisional hernia repair I'd had a couple of years after my surgery would be messed up by a new surgery.  I'd had mesh implanted with that surgery.  But apparently, going in through the side will not affect that.

I have seen the mention of masses of the paracolic gutters in several other threads, both on here and on the peritoneal cancer discussion board, so it's apparently a common place to have a mass.

Thank you, everyone, for your comments and helpful information.  

Pinky, you have so much courage and strength.  Thank you for opening your heart.  You will be in my prayers.  I'm glad you get a vacation.  You are an inspiration.

Jeanette