Fallopian tube girl on your uterine page

thatblondegirl

Seriously???

So.., the GO's office just called to tell me that they don't have the final pathology report from my surgery and that it will be two more weeks before they get it. They wanted to warn me that there would be NO discussion about chemotherapy today. That nurse I'm not fond of said, "You can come in and talk about your feelings..." OMG! Are you kidding me? She said they "...still have determined the origin of your cancer cells and we can't proceed to treatment until we know that." I said, "I'm not a rocket scientist, but I would say that all roads lead to the Fallopian tube," She replied, "Not necessariy." 
I asked, "If I come today can we talk about the pathology you DO have from my surgery?" She assured me we could. I said I would come if we could do that AND I could leave there with copies of that report in my hand. She said I could.

I'm so upset, Y'all! Have any of you ever heard of such a thing? It taking 5+ weeks for pathology? And I'm scared to death that there's some new/different cancer and that's why they can't figure out "origin." After surgery he talked about removing "layers" of endometrial tissue and scarring to get cancer off that colon "bumper" and bladder. Last time I knew endometriosis originated in the uterus (and there was no cancer in my uterus, so endometriosis was present and became cancerous outside the uterus). And if the original source...the Fallopian tube... was removed August 5th and was not a part of the September 23rd pathology, how could they identify it as the source??? That's a question I will ask this afternoon.

I complained that "cancer cells are growing in my body as we speak" & that "no one but me seems to possess a sense of urgency," and she insisted that's not true. 
I asked why can't we begin treatment based on what we DO know? Nope.

Thank you for listening, friends. I just needed to vent. I'll let you know what they say later this evening. 

xo, Alicia 

 

LisaPizza

So frustrating.  I will say

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.

MAbound

Multiple Labs

My tissue was sent to 3 labs in 3 different states for testing because there was some suspicion that I had 2 separate cancers (cervical and endometrial) growing at the same time towards each other, but it was ultimately determined that the opposite was true...the cancer originated in the neck of my uterus and had grown down into the cervix as well as upward into the fundus. It was one cancer, not two, thank goodness! They also had to tease out if one of my fallopian tubes had been contaminated during handling. It took 4 weeks for my pathology to be finalized. The point is, pathology testing is rather tricky and a conscientous surgeon is going to get multiple opinions before finalizing your staging and pathology to determine your plan of treatment. So much rides on getting it right. You want him to be thorough, so it can take some time. Your case is a bit outside of the norm because of the two surgeries and a rarer probable point of origin, so I think I would take comfort from them taking more time to get your pathology right.

We all want the cancer out of us, like yesterday, when we get diagnosed, but this is a slow growing cancer and there is time to spend on testing, getting 2nd or 3rd opinions and the like before rushing into treatment. I'd start researching and looking into genetic and or genomic testing at this point because that would give your oncologist even more ammunition and guidance for treating you. Insurance won't cover it, but it can be worth paying for out-of-pocket. You don't have to hold off on treatment while doing it, either. While you are feeling this sense of urgency, I'd advise you to step-back and just breath a bit. There is time to get diagnosed correctly and get what is the best treatment for you.

thatblondegirl

Thank you!

Thank you, LisaPizza & MAbound! That is very helpful....the idea of being patient & because of my cancer type we have time to get it right. It's just soooo frustrating!

I think it was in an earlier post in this thread that I made reference to the fact that nothing is ever simple when it comes to me. Nothing! I was just really, really hoping that this afternoon's appointment would be different and we could get a straight answer & move forward.

I've done extensive reading on endometriosis becoming malignant and being found on other pelvic structures since my last post. So....it's called "etragonadal," (now there's a word I don't really want to know!)...and of course, it's extremely rare, but that's what probably happened with my bladder.

Huh.....she said this delay is all about finding the original source of my cancer....remember how I've worried that the GYN drug all my stuff out of there, so sure it wasn't cancer, that he left all kinds of cancer cells spread everywhere! And GO reported that GYN said repeatedly during my last surgery, "that wasn't there in August!" Might I suggest that HE was the source??? Just a thought..... (My goal today is to gain information, not make people mad, so I will try to keep quiet )

I'll let y'all know!

Alicia

thatblondegirl

Mistyped my new word!

Sorry that new word is "extragonada!"

Forherself

Endometriosis

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.

thatblondegirl

Wow

Thx, Forherself! I did not know that...about it always being there! 
Originally I asked GO about where my cancer was and that maybe it didn't necessarily spread in the traditional way of if, but that the endometriosis was there....in any number of spots...and then became cancerous. His only reply, "Well...we'll never know because we weren't there when it happened." I'm going to ask that same question again today and see if his answer is any different. 
Just have to wait a couple of more hours...

❤️, Alicia

thatblondegirl

Didn’t happen...

So, 4:45 pm appointment time.  6+ women crowded into tiny waiting area, with no empty chairs...all wearing masks, but actually seated shoulder to shoulder. Receptionist tells me the wait will be at least 2 hours. Says, "Do you want to wait?" I said, "Uhhhhh... H**l, No!!" I ask for my promised "pieces of paper" (the pathology they said theyDID have and would give me) No. Come back tomorow. 

I didn't feel good enough to sit in a bad chair for 2hours & what a dangerous situation with those women packed in there like sardines. No way!

I have an appointment at 8:30am. 
Let you know if I learn anything!

Good night, dear Ladies!

Alicia

MAbound

Long Waits

I loved my gyn oncologist. He was such a compassionate, patient man who let me bring in my husband to appointments and took the time to answer both of our questions even if I came in with a page of them written down. He treated each of his patients in treatment this way because we all had so many questions and decisions to be made throughout the whole months-long process.

The flip side of his being this way was that I often had to wait way past my appointment times to get my turn with him. I didn't let it get to me because I knew that he was doing for someone else what he was doing for me and he was worth waiting for. I made sure that I always took something to keep me entertained while waiting.

I imagine that Covid is making all of that a lot harder these days, but if the waiting room feels unsafe, couldn't you give them your cell number and wait out in your car till they can take you in? It's not ideal, I know, but such are the times we are living in and being adaptable will serve you a lot better than getting upset with what can't be changed. Waiting extra for appointments is very likely going to be more the norm than the exception for your foreseeable future, so I recommend being prepared for that so that it will be less upsetting. Having cancer takes the patience of Job sometimes, but you gotta do what you gotta do!

thatblondegirl

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

LisaPizza

I'm glad it's stage 2! I've

I'm glad it's stage 2! I've heard of peritoneal cancer but I haven't researched it. I know it's related to ovarian and fallopian tube cancer. 

cmb

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

Peritoneal cancer

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.

 

Kaleena

LisaPizza said:

So frustrating.  I will say

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.

You're so right about that

You're so right about that Lisa.  They never did determine my primary.  They ended up calling it Endometrial Adenocarcinoma but treating it as Ovarian.   They thought it might be MMM but wasn't sure.

 

 

thatblondegirl

Hi!

I appreciate your help, Ladies!

i did the search for Peritoneal and worked backwards and was able to find Loretta! Thx, cmb!

I've probably spent too much time this weekend online looking for answers. It's almost impossible because every case, each of our stories, are so unique. I'm just trying to understand how the pathology from from hysterectomy and from the second surgery could be different. And all cancer has been found on the left side....Fallopian tube and the new stuff. None on right. The morning after my surgery I asked the surgeon, "So, The GYN kept repeating 'that wasn't there in August!', so I KNOW what kind of cancer I have and it's slow growing. If that's true why would there be all these spots (4) only 7 weeks later? Do I have a SECOND kind of cancer that is fast growing?" He emphatically replied, "NO!" He fumbled around saying GYN was good doctor, but not an ONC...implying he didn't see/recognize that it was cancer.

Now it looks like I might have been right. Best I can tell, what's happened is the pathology has been sent for "CancerTYPEid," to try to determine origin. I found a website by that name located in San Diego...which might explain part of the delay. 

I sure am thankful all of you ladies are here to listen and offer advice and encouragement.

xo, Alicia

Forherself

alicia2020 said:

Hi!

I appreciate your help, Ladies!

i did the search for Peritoneal and worked backwards and was able to find Loretta! Thx, cmb!

I've probably spent too much time this weekend online looking for answers. It's almost impossible because every case, each of our stories, are so unique. I'm just trying to understand how the pathology from from hysterectomy and from the second surgery could be different. And all cancer has been found on the left side....Fallopian tube and the new stuff. None on right. The morning after my surgery I asked the surgeon, "So, The GYN kept repeating 'that wasn't there in August!', so I KNOW what kind of cancer I have and it's slow growing. If that's true why would there be all these spots (4) only 7 weeks later? Do I have a SECOND kind of cancer that is fast growing?" He emphatically replied, "NO!" He fumbled around saying GYN was good doctor, but not an ONC...implying he didn't see/recognize that it was cancer.

Now it looks like I might have been right. Best I can tell, what's happened is the pathology has been sent for "CancerTYPEid," to try to determine origin. I found a website by that name located in San Diego...which might explain part of the delay. 

I sure am thankful all of you ladies are here to listen and offer advice and encouragement.

xo, Alicia

It is very common

to have more than one cancer cell type in a specimen.  Serous carcinoma and exist with endometrioid.  Cell mutations are not organized.  Once they appear they can go in many different directions.  Its like the mutations mess up the cell function so other mistakes can happen.  It took me awhile to realize this too.  

 

thatblondegirl

That’s so frightening...

To think that I haven't even been able to start treatment for my original cancer diagnosis and already my cells are mutating and finding new ways to kill me. Seven weeks from my first surgery to the second, and it's been a month since then. And 2 more weeks before thry give me final pathogy and maybe get me on a schedule for treatment? It seems hopeless.

Forherself

alicia2020 said:

That’s so frightening...

To think that I haven't even been able to start treatment for my original cancer diagnosis and already my cells are mutating and finding new ways to kill me. Seven weeks from my first surgery to the second, and it's been a month since then. And 2 more weeks before thry give me final pathogy and maybe get me on a schedule for treatment? It seems hopeless.

I waited too

I had my US in January, was not able to get into the Gynecologist til March, waited a month for biopsy, then two weeks for my visit with Gyne Onc,  and two weeks more for my surgery.  You will be ok.  Cells do not grow that fast.  

BluebirdOne

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 

Fridays Child

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 

Denise, that's awful!

So sorry to hear you were treated like that!  I guess my experience was atypical.  I had my ultrasound with my GYN early one week, had my D&C/hysteroscopy that Friday, was scheduled a week later with the gyn oncologist, and had my surgery the following week.   Less than three weeks from ultrasound to hysterectomy.

 

Primavera

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 

That's so awful

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.