Fallopian tube girl on your uterine page

So frustrating.  I will say that reading pathology is much more variable than people think. Scary but true. Also, in terms of determining origin, they can do a lot of different laboratory testing that helps them determine origin. I don't think difficulty or taking extra steps to be sure necessarily means you have something bad or rare. I think some cases can just be harder to read than others. I do think a careful and accurate pathology determination is really important, and sometimes regret not pursuing a second pathology and treatment opinion, just as a matter of course.  I wish it was standard.

But all the waiting is so difficult. I only waited a week and a half (a miserable week and a half due to a misunderstanding in what she told me at the hospital, which left me thinking I may have a distant met from an unknown primary). I can't imagine waiting for so long, but I have seen many ladies have a very similar situation to yours.

You would sure think oncology staff, of all people, would have better people skills.

I have it too.  This is just an additional fact.  We have a friend who is a pathologist.  He told me that endometriosis is endometrium OUTSIDE the uterus.  AND it is developed while you are still an embyo.  The endometrial cells are depostited in the wrong place at a very early stage of. our development.  It wasn't something anyone did.  And it is always outside the uterus.

alicia2020 said:

Update

Got past the disappointment of yesterday and was in his office first thing. That was a great idea about waiting in the car MA! Yesterday it was just so late in the day, and by that time I'm not feeling well at all & I just couldn't sit there.

So I got most of the news today. Best news: No lymph nodes involved! Omentum was clean!So what I've got is only in the pelvis and I'm still Stage 2!!!

As to all the little spots...the "bumper" he removed from outside of colon and the spot on bladder..and a couple of other tiny spots, including that "nodular soft tissue" that was on CT, were adenocarcinoma. It's hard to explain, but the reason they want more staining is because the cells are slightly different than the cells from the Fallopian tube from hysterectomy. FT cells were "mild to moderately differentiated" and the cells from newest surgery were "poorly differentiated." So... they don't match exactly. Stains aren't exactly the same. Concern is if there is some other primary tumor somewhere? GO thinks nit....we'll, for one thing nothing on CT, and he didn't see anything else! Then he kind of referred to it as Peritoneal cancer...but that it's basically like ovarian cancer...I'm thinking basically a gynecological cancer that because it's kind of out there in the pelvis (not inside some closed organ) that the tumor cells brake off and are kind of randomly present. Still need chemo, but drugs and/or dosages will depend on final report.

He still believes I'm 'fixable," because it's still Stage 2 and I've now had optimum "tumor debulking." Only work for the chemo to do is microscopic stuff.

All in all we feel pretty darn good about it!

Have y'all ever heard of Peritoneal cancer?? Ever heard of a mix of adenocarcinomas? I know some have more than one kind of uterine cancer, but not two different adenos?

Thanks again for all your support! It means the world to me!

Have a great weekend, Ladies

?, Alicia

There is a board on CSN for Peritoneal cancer, but it doesn't seem to be very active. However, LorettaMarshall, who was a very active member on the Ovarian board had that type of cancer. She was a frequent poster who shared a lot of her research and experiences with others. If you search by the keyword Peritoneal a lot of posts will pop up. And if you go to the last page and work your way backwards you'll find a lot of posts from Loretta. And there are other members there who had it as well. 

But for now, it's very positive that you're still Stage 2. That increases the likelihood of a very good outcome after chemo. I hope you can finally relax a bit and enjoy the weekend.

which took place finally, 4 months from my original spotting because my gyne decided to go on a three week vacation. People have this misguided opinion that American healthcare is so great. It is great once you get scheduled for the most part. It is the getting scheduled part that is the bane of all of our existances. I have to say, going to a large, regional teaching research facility for surgery and treatment was so helpful as they did all of the scheduling for me, within days of each treatment because they know that folks come a long way to see them. My local docs! Laughable. Ridiculous, struggling to have them call me back, endured more insults to get scheduled, (my gyne's office manager told me that I was a line jumper and had to wait my turn! No offer of referral, no sympathy for a potential cancer dx, just insulting nastiness). I was polite, dismayed at their rudeness, (which the doctor feigned no knowledge) and never went back to after my hysteroscopy. I had a complication while in recovery at the outpatient surgical center and had to drive ourselves to the ER to be treated. My doctor who performed the hysteroscopy never called to inquire how I was, and was baffled as to why he should have, plus he showed up 1 3/4 hours late to the procedure. No one could find him! Horrifying, but I knew that if I started all over again I would have to wait to see a new doctor, wait to be sceduled again, and no one besides me cared. I called a few other local gyne and was told if I wasn't already a patient that I would have to wait a month or more for an initial appointment. So I said to myself, what do you have to lose besides your life! Try for the best treatment, even if it was far away and inconvenient. So I called the teaching hospital and was scheduled immediately for surgery.  I was treated with the utmost respect and quickly. My experience scared me so much that I opted to have all my surgery/chemo/rad/follow ups at a facilty 6 hours from home, because I knew I would be getting 1st rate CARE, not subjected to the whims of a sadistic office clerk and a doctor whom I now realize was incompetent who recommended I use his "preferred" GO. So many of us have dx horror stories, I was still 1a at dx, UPSC, but the forced waiting was excrutiating, probably worse for me than any of the actual treatments, mentally. Sorry to be so Debbie Downer, but I think that people should know that the waiting is common and a sad fact of many cancer dx. Those of us with UPSC will always wonder if the delay will cause us our lives in the end. 

xxoo

Denise 

BluebirdOne said:

I waited 5 weeks for a hysteroscopy

which took place finally, 4 months from my original spotting because my gyne decided to go on a three week vacation. People have this misguided opinion that American healthcare is so great. It is great once you get scheduled for the most part. It is the getting scheduled part that is the bane of all of our existances. I have to say, going to a large, regional teaching research facility for surgery and treatment was so helpful as they did all of the scheduling for me, within days of each treatment because they know that folks come a long way to see them. My local docs! Laughable. Ridiculous, struggling to have them call me back, endured more insults to get scheduled, (my gyne's office manager told me that I was a line jumper and had to wait my turn! No offer of referral, no sympathy for a potential cancer dx, just insulting nastiness). I was polite, dismayed at their rudeness, (which the doctor feigned no knowledge) and never went back to after my hysteroscopy. I had a complication while in recovery at the outpatient surgical center and had to drive ourselves to the ER to be treated. My doctor who performed the hysteroscopy never called to inquire how I was, and was baffled as to why he should have, plus he showed up 1 3/4 hours late to the procedure. No one could find him! Horrifying, but I knew that if I started all over again I would have to wait to see a new doctor, wait to be sceduled again, and no one besides me cared. I called a few other local gyne and was told if I wasn't already a patient that I would have to wait a month or more for an initial appointment. So I said to myself, what do you have to lose besides your life! Try for the best treatment, even if it was far away and inconvenient. So I called the teaching hospital and was scheduled immediately for surgery.  I was treated with the utmost respect and quickly. My experience scared me so much that I opted to have all my surgery/chemo/rad/follow ups at a facilty 6 hours from home, because I knew I would be getting 1st rate CARE, not subjected to the whims of a sadistic office clerk and a doctor whom I now realize was incompetent who recommended I use his "preferred" GO. So many of us have dx horror stories, I was still 1a at dx, UPSC, but the forced waiting was excrutiating, probably worse for me than any of the actual treatments, mentally. Sorry to be so Debbie Downer, but I think that people should know that the waiting is common and a sad fact of many cancer dx. Those of us with UPSC will always wonder if the delay will cause us our lives in the end. 

xxoo

Denise 

So sorry that happened to you.

I never made any appointments. For both cancers, I've been sent from one doctor to another. My gynecologist picked up the phone right in front of me and called the gyno-oncologist and sent me downstairs with an order to get pre-operative scans that same day. After the operation, the gyno-oncologist sent me to the radiologist and the geneticist, and so on.

It's been the same with the breast cancer. After the first mammogram, appointments were made for me. I was just called for a choice of the time, not even for a choice of day. Everything from extra biopsies to MRIs have been scheduled for me. I was upset that everything was happening so fast and the appointments were one after the other, but maybe that was better. For a few days I felt like I lived at that building! When I was done with all that I kind of was pleased at the routine of chemo treatments.

I think I read once that you went to a hotel near your cancer center. My cancer center is 15 min. away, but I thought of you and a hotel and I actually looked for a hotel at walking distance of the center, when I thought about you, but there wasn't any.