Need some feedback

CJHCJ

Hello Everyone,

Let me say ahead of this post that I feel like a real Pansy compared to you women out there who have really had to find out they had this cancer and then had to fight and fight living in the unknown after each new step until NED and even after that to some extent.  I will also apologize ahead of time if I sound like a whiner or a big baby or whatever.

Last time I posted it was about whether or not I needed to continue to have a GYN after clear pathology.  Something that has been on my mind about this experience that is really bothering me, perhaps unreasonablely, I really need some input here.  Right now I kind of look at this as "the horrible gift that wasn't really there"  So in my last post when I said my pathology was clear, I meant CLEAR CLEAR like nothing.  My pap showed Adenocarcinoma not plain ol' abnormal cells or dysplasia only the word adenocarcinoma was used in describing these cells.  In the separate cone biopsy and then total hysterectomy pathology showed nothing abnormal.  They did find one 2cm fibroid.  Other than that perfectly healthy ovaries, uterus, and tubes.

 When I talk about the orginal PAP I need to clairify that I was so flabergasted by its findings that I went and met with the pathologist and looked through a microscope with the pathologist at the actual slide with those cells and had him explain what set them apart from healthy cells and it was not difficult to see why I was being sent to a GYN ONC.

Then I had the cone biopsy and they found....nothing...not even abnormal cells.  Then the total Hysterectomy...nothing, not even anything slightly abnormal.  

Here is the tricky part for me.  I am so thankful that there was nothing there to stage...at all.  Reading the stories of the women here have helped me to appreciate that all the more.  I spent from the end of January living with a realization the the surgery could reveal in situ to some kind of high stage.  The GYN ONC said if nothing else the expectation was for some abnormal cells and based on the slide that I saw for me at 51 years old the total hysterectomy was a completely good route to go.  But being told there was nothing found was a bit of a WTF moment.  As you all know more than anyone would know, I spent a lot of time wavering between fear and bravery. I joked about it some.  Tried to calmly evaluate my life and what is important to me, told my daughters what was going on, tried to live in the future even though I didn't know what was going to happen. You know the processes our minds go through.

In general it sucked...but that was also the gift.  I got to rethink my life and it wasnt a drill.  It was the real thing and I had to wait and wait to find out what was going on in my body.  I was forced to take time to think.  I was forced to realize that really every moment for everyone is the unknow.  That even now as I and the docs. consider my body cancer free I am still living in the unknown.  For those lessons I am thankful.

It is my understanding from a few doctors that this is extremely unusual...like they have never experienced it with a patient.  It is a mystery.  In my mind there are very few scientific answers to this outcome, and many of them a stretch beyond reasonable.  Have any of you heard of anything like this happening?  In my last visit with my GYN ONC I asked her if this just happens sometimes and she said "not really"  I feel like a Big whiner for even bringing this up or for even struggling with this outcome.  In so many ways I feel like I should just cut my losses benefit from the gift of having to go through the process.  At the same time I feel like there is a mystery to be solved.  I have also wondered if those cells on the Pap test slide were mine or if there was some kind of mix up as the test moved through the OBGYN office and to pathology.  Based on the slide that I saw and my understanding of it everything I did was a good call.  After you find the adenocarcinoma cells you look for them.  On the other hand if that was not my pap test, I am not OK with that for multiple reasons.  If it was mine for sure then I can live in that mystery.   The other though that has crossed my mind is do I still need to be vigilant in watching for any other cancers.  I have told my daughters that for now they don't need to consider it part of their family medical history.  I am also being careful about what my medical records say as regardless of what one thinks about the ACA it will no doubt change drastically and insurance after cancer can be tricky.  Any other thoughts?

 

 

 

 

NoTimeForCancer

I am confused too.  I have

I am confused too.  I have seen adenocarcinoma pop up before.  So I put it in google and the dictionary, and 'adenocarcinoma' is not specific and is usually used in conjunction with a location, for example invasive ductal carcinoma. That is not meant to be derogatory, I am just curious what type of cancer they said you had?

I guess I am also curious if the cone showed nothing then why go ahead with the hysterectomy?  Why not monitor? 

I apologize if this sounds harsh, it is not meant to be.  I just can't find the right words. 

CJHCJ

NoTimeForCancer said:

I am confused too.  I have

I am confused too.  I have seen adenocarcinoma pop up before.  So I put it in google and the dictionary, and 'adenocarcinoma' is not specific and is usually used in conjunction with a location, for example invasive ductal carcinoma. That is not meant to be derogatory, I am just curious what type of cancer they said you had?

I guess I am also curious if the cone showed nothing then why go ahead with the hysterectomy?  Why not monitor? 

I apologize if this sounds harsh, it is not meant to be.  I just can't find the right words. 

no apology necessary

The reason to move forward even with a clear cone is that I had an ablation about 6 years ago so there was no ability to see what was going on in the uterus without removing it.  The cells that showed up in the pap had to come from somewhere and it might have started in the uterus.  A biopsy is always done before an ablation but it is only a small sample...and the reason I had the ablation was because of excessive bleeding not related to fibroids. 

 Being 51 and done with having children and almost finished with the ovaries there is no need to risk keeping the uterus or ovaries if adneocarcinoma cells show up in a pap.  It was never defined where they came from...that is they were clearly not cervical and they did not show up in the uterus or ovaries or tubes pathology.  It is my understaning that adenocarcinoma can show up all over the place.... lungs, bowel, it can start in the uterus and go to the cervix or vice versa...At least that is my understanding. It is just a carcinoma of glandular tissue.  The pap is only a screening test but in my mind it was like finding rodent droppings in a really big box with lots of stuff in it..You can look around in the top of the things and risk the continued presence of said rodent or you empty the box and check it all out.  It is probably not best to burn the whole attic down but at 51 a total hysterectomy isn't the end of the world.  The cells had to come from some where.  They never defined where the cells came from.

Don't worry about sounding harsh.  I'm the one trying to come to terms with what is as confusing as it is a GIANT blessing.  

Maybe the first pathology on the pap was wrong....but I saw it...looked at it have a photo of it.  and they sure did have all of the characteristics.

Maybe the pathology on the cervix, uterus, tubes and ovaries was wrong...but they knew what they were looking for and had plenty of time and plenty of material to work with.

Maybe they got them all in the pap test (no I am not going with that one).  That has actually been suggested by one medical person who was involved.

Maybe human error was involved... absolutely no one involved in the orginal pap has given any indication that they believe human error could have played a part.

Someone suggested that the immune system is always clearing "cancer" cells from your body, maybe they just caught a few on my cervix as my body was doing the work it was suppose to.

It seems to be coming down to a "we may never know"   Has anyone else heard of this happening?

NoTimeForCancer

CJHCJ said:

no apology necessary

The reason to move forward even with a clear cone is that I had an ablation about 6 years ago so there was no ability to see what was going on in the uterus without removing it.  The cells that showed up in the pap had to come from somewhere and it might have started in the uterus.  A biopsy is always done before an ablation but it is only a small sample...and the reason I had the ablation was because of excessive bleeding not related to fibroids. 

 Being 51 and done with having children and almost finished with the ovaries there is no need to risk keeping the uterus or ovaries if adneocarcinoma cells show up in a pap.  It was never defined where they came from...that is they were clearly not cervical and they did not show up in the uterus or ovaries or tubes pathology.  It is my understaning that adenocarcinoma can show up all over the place.... lungs, bowel, it can start in the uterus and go to the cervix or vice versa...At least that is my understanding. It is just a carcinoma of glandular tissue.  The pap is only a screening test but in my mind it was like finding rodent droppings in a really big box with lots of stuff in it..You can look around in the top of the things and risk the continued presence of said rodent or you empty the box and check it all out.  It is probably not best to burn the whole attic down but at 51 a total hysterectomy isn't the end of the world.  The cells had to come from some where.  They never defined where the cells came from.

Don't worry about sounding harsh.  I'm the one trying to come to terms with what is as confusing as it is a GIANT blessing.  

Maybe the first pathology on the pap was wrong....but I saw it...looked at it have a photo of it.  and they sure did have all of the characteristics.

Maybe the pathology on the cervix, uterus, tubes and ovaries was wrong...but they knew what they were looking for and had plenty of time and plenty of material to work with.

Maybe they got them all in the pap test (no I am not going with that one).  That has actually been suggested by one medical person who was involved.

Maybe human error was involved... absolutely no one involved in the orginal pap has given any indication that they believe human error could have played a part.

Someone suggested that the immune system is always clearing "cancer" cells from your body, maybe they just caught a few on my cervix as my body was doing the work it was suppose to.

It seems to be coming down to a "we may never know"   Has anyone else heard of this happening?

THANK YOU for understanding.

THANK YOU for understanding.  To go back to the question do you still need a gyn?  I can bet all the women here have heard, "with your history...." you need to continue to have mamograms, colonoscopies, etc....if there was something there once, there is always the possibility that you have something hiding or are predisposed. 

I think they have found that we all have little cellular oddities running around our system but our immune system does what it is supposed to and 'cleans it up'.  It is only when the cells cannot be contained that they create these little monsters we know.