Results of my gyn/onc appt. on Monday

pinky104

I just wanted to let you know the results of my gyn/onc appt. on Monday.  I still have a small mass in my paracolic gutter.  It's now 1.1 x 1.4 cm. and in June it was 1.0 x 1.4 cm. My CA-125 was 6.3 then and it's 6.4 now.  So both the CA-125 and the results of the CT scan show a 0.1 increase.  The radiology report my gyn/onc got was incorrect, but I didn't realize it until I looked at the copy he gave me on the way home.  I didn't catch the error in his office because he was referring to the size of the mass in millimeters where I knew what it had been previously in centimeters (I do better with inches than with the metric system measurements).  The report had the size of the mass in June as 0.8 x 1.3 cm.  Therefore, the doctor was under the impression it had grown more than it actually had.  He asked if I am feeling well, and I told him I am, so he wants to wait until December and do the labs and CT scan again at that time.  He told me he'd actually prefer to have it grow a little bit so that he can find it when he goes to remove it.  He'll go through my side and do a laparoscopic  procedure to remove it.  He compared it to the size of a pea, but my husband says it's more like the size of a lima bean based upon the measurements. I know there is about 2.5 cm. in an inch.

I'm glad to be able to put the surgery off, but now it'll fall in the winter when the roads could be bad, not to mention that the holicays could be affected.  I have about an hour trip to the hospital in good weather.  I guess it's possible that the mass may not have grown enough by then that he still may not want to remove at that time. 

I'll be 4 years and 7 months out from my original surgery by the time I have my next one.  I guess I'm doing pretty well for having had stage IVb UPSC, knock on wood.  I'm probably jinxing myself by saying that.  I remember Jan saying she was NED about a year before she passed, and I thought I was, too, until late May.  I'd had pain on the left side, so my family doctor's office ordered a CT scan.  Nothing was found on that side, but this mass was found on the right.      

Kaleena

Hi Pinky
glad for you good

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

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

Abbycat2

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

Good Morning, Ladies

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

Abbycat2 said:

Good Morning, Ladies

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

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

It happened to Me

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

Thanks Cathy

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

Jeanette

pinky104

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

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.  

It happened to Me

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.  

Thanks for the Update

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

pinky104

It happened to Me said:

Thanks for the Update

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

Thank you, Jeanette

Thank you for the compliment and for the prayers.  I'm not sure I deserve the compliment.  I just do what they tell me to do.  I actually like putting off the surgery, although I know the time will come where I won't be able to any longer.  It'll probably hurt just like my hernia repair did, as the surgeon pumped my gut full of gas.  The surgery was on the right side, but I had more pain on the left from the gas they put in me.  I'm not looking forward to that happening again. The narcotics didn't touch it.  At least I won't have a big incision this time since it's being done with a laparoscopy. 

I had my vacation in July and was very glad I was given a reprieve so I could go up to southern Maine.  It's my favorite place. Missing that a couple of years ago when my husband had his surgery was almost worse than getting cancer.