Has anybody heard this: Ovarian vs UPSC

It happened to Me said:

Thanks

I just wondered if anyone else had heard of that.  Doesn't sound like it.   Thank you for your views.  I hadn't heard of that.  I'm thankful for you ladies and your posts.

For whatever reason, I'm not in a good place.  It's been 9 months post chemo. and I feel like I have the grumbles and I'm so much more sensitive and get my feeling hurt really easy.  It feels like no matter what I say, someone (the way I feel right now) basically says I'm wrong.  It's like I'm talking another language or not making myself clear anymore.  I already have trouble getting out what I want to say and words don't come to mind very quickly anyway.  I had a doctor's appointment on monday for my shoulder but ended up spilling on My doctor who is such a good listener.  He said that chemo. changes chemicals in the brain and situational depression can happen.  Am I going through a depression or am I not grieving over my cancer?  I never really had any problem through the whole process and have been very upbeat through surgery and chemo. and it just seems like I can't get back there.  I was beginning to have more good days and I was getting stronger and had 1 really good week about 4 or 5 or 6 weeks ago and WHAM I haven't had a really good day since.  I don't get it.  I don't know if I'm dwelling on this stupid cancer stuff too much or if I'm just thinking I should be further ahead with this whole thing of emotions, strength, endurance.   Right now, and I really hate to say this, but I'd almost be relieved if I did have a recurrence.  That's crazy.  I don't want it anymore, I want my life back, not my old life because I've learned so much through this experience but I want to go, do and be like I used to be.    It's like I want to growl at everyone.   

Help ladies, I feel like I'm going crazy.

Jeanette

My doctors are of the school that Ovarian PSC and UPSC are the same cancer just located in different parts of the body.  They have consulted with City of Hope, UCLA, Sloan Kettering and MD Anderson plus NCI and all agree - the treatment protocols being followed exactly mirrors that of Ovarian PSC.  It is interesting because all of the insurance forms are checked for Ovarian indicating Uterine PSC for the approvals for treatment.  I know this is unusual but found others on Inspire (Ovarian Cancer Support site) whose doctors did the exact same thing.  What my team is focused on is the type of cancer first, location of origin second.  The other thing they've done is a full family history that had them focus on my father's particular type of brain cancer as well as taking my mother's triple negative breast cancer into consideration.  It is really fascinating to me and certainly a new way of thinking. 

What you are describing emotionally is simliar to what I hear from my Chemosabes post treatment and NED.  I only had a three month window of that and am back in the fight again (whole other issue); between chemo brain, people telling them how lucky they are and trying to live in the new normal which isn't normal - that is a lot going on.  Everything has changed and everyone around you thinks it is the same as before.  There are groups out there for post treatment that might help or certainly talk to your doctors.  Even with mets and recurrence I feel I have to define this new phase since outwardly I look the same (except for my whacky chemo hair), work and am in the old routines.  inwardly I feel totally different.  So I decided to do something for me, outside of all of this and am taking up riding again.  i haven't really ridden a horse since I was a teenager - used to ride alot.  I am also getting up earlier and walking my dog to a place where I can see the whole San Fernando Valley as the sun comes up.  Very peaceful.  This stuff allows me to breathe.  And wierdly enough I felt like I couldn't ever just exhale for months.  Stay Strong.  You can do this.  And do it your way!  Hugs.

Maggie_mac said:

Ovarian vs UPSC

My post surgical pathology report states, "The carcinoma in this case involves multiple organs and sites and associated with lower grade tumor compoments in both the endometrium and bilateral fallopian tubes.  It's academic debatable whether this case is arising from the endometrium, fallopian tube or ovary or from two separate synchronized tumors.  For current clinical management, we consider the tumor as an endometrial primary."  This statement was taken directly from my surgical pathology report at the Hospital of the University of Pennsylvania [HUP].  They couldn't tell for sure so they just had to decide what to call it.  Sometimes my oncologist calls it UPSC and sometimes ovarian cancer.  What they do know is that with this cancer there is a serous component, a papillary component, and it was all retrieved from all the organs harvested.

I guess the point I want to make is that medicine is still almost as much art as it is science.  Sometimes even under a microscope the most knowledgable scientists can't give us a definitive answer.  I'm just thankful they've figured out that UPSC responds better to the treatment used to fight ovarian cancer than it has to the type I uterine cancer.  Let's just hope and pray they find someting to kill the little bas***** before they kill us! 

I hope I didn't offend anyone.  Bless you all.

p.s. has anyone found the "Spell check" on this site?

Maggie

Always good to hear from others what their docs are saying and doing!  Stay strong!

When I was diagnosed with UPSC, my gyno/oncologist, who specializes in ovarian cancer, told me that UPSC is the same CELL type as ovarian cancer and it should be treated as such. 

She's very well known here in Houston, and used to work at MDAnderson.....she has her own private practice in the med center. My second opinion was at MDA and the doctors there told me they agreed with her treatment plan, which was 6 cycles of carbo/taxol spaced 3 weeks apart. That seems to be standard treatment for this cancer. She told me that she would NEVER recommend watchful waiting only for UPSC. 

I was diagnosed in 2011 and so far so good.  I think the bottom line is that this is a very sneaky and aggressive cancer, and must be treated aggressively, no matter what the stage. There's still a lot to learn about it, but unfortunately, because of it's relative rareness, more studies are conducted on ovarian cancer than on UPSC. Hopefully those studies will help those of us with this type of cancer. 

Maggie_mac said:

Ovarian vs UPSC

My post surgical pathology report states, "The carcinoma in this case involves multiple organs and sites and associated with lower grade tumor compoments in both the endometrium and bilateral fallopian tubes.  It's academic debatable whether this case is arising from the endometrium, fallopian tube or ovary or from two separate synchronized tumors.  For current clinical management, we consider the tumor as an endometrial primary."  This statement was taken directly from my surgical pathology report at the Hospital of the University of Pennsylvania [HUP].  They couldn't tell for sure so they just had to decide what to call it.  Sometimes my oncologist calls it UPSC and sometimes ovarian cancer.  What they do know is that with this cancer there is a serous component, a papillary component, and it was all retrieved from all the organs harvested.

I guess the point I want to make is that medicine is still almost as much art as it is science.  Sometimes even under a microscope the most knowledgable scientists can't give us a definitive answer.  I'm just thankful they've figured out that UPSC responds better to the treatment used to fight ovarian cancer than it has to the type I uterine cancer.  Let's just hope and pray they find someting to kill the little bas***** before they kill us! 

I hope I didn't offend anyone.  Bless you all.

p.s. has anyone found the "Spell check" on this site?

Maggie

My cancer was first thought to be ovarian cancer, but my gyn/onc met with a tumor board and they decided it originated in the uterus and spread to both ovaries, the omentum, and the small intestine.  I was surprised they didn't find anything in the tubes between the ovaries and the uterus. I'm not quite sure how they made their decision.  Perhaps there was a difference in appearance between the cancer sites where one looked more fully developed than the other.  It certainly isn't an exact science.

It happened to Me said:

Thanks

I just wondered if anyone else had heard of that.  Doesn't sound like it.   Thank you for your views.  I hadn't heard of that.  I'm thankful for you ladies and your posts.

For whatever reason, I'm not in a good place.  It's been 9 months post chemo. and I feel like I have the grumbles and I'm so much more sensitive and get my feeling hurt really easy.  It feels like no matter what I say, someone (the way I feel right now) basically says I'm wrong.  It's like I'm talking another language or not making myself clear anymore.  I already have trouble getting out what I want to say and words don't come to mind very quickly anyway.  I had a doctor's appointment on monday for my shoulder but ended up spilling on My doctor who is such a good listener.  He said that chemo. changes chemicals in the brain and situational depression can happen.  Am I going through a depression or am I not grieving over my cancer?  I never really had any problem through the whole process and have been very upbeat through surgery and chemo. and it just seems like I can't get back there.  I was beginning to have more good days and I was getting stronger and had 1 really good week about 4 or 5 or 6 weeks ago and WHAM I haven't had a really good day since.  I don't get it.  I don't know if I'm dwelling on this stupid cancer stuff too much or if I'm just thinking I should be further ahead with this whole thing of emotions, strength, endurance.   Right now, and I really hate to say this, but I'd almost be relieved if I did have a recurrence.  That's crazy.  I don't want it anymore, I want my life back, not my old life because I've learned so much through this experience but I want to go, do and be like I used to be.    It's like I want to growl at everyone.   

Help ladies, I feel like I'm going crazy.

Jeanette

Hi all again!

Like Jeanette, I too have been in a bad place.  I went through surgery and chemo and my friends said I showed everyone how to deal with cancer with my upbeat mood.  Well my mood went from upbeat to being a witch.  I met someone right after I was finished with chemo and married him, now we have parted ways.  He claims most of it is my fault but it takes to to ruin a marriage.  Plus my 93 year old mother, who had a bowel blockage last year which was positive for lobular carcinoma from her left breast cancer of 11 years ago, lived with us, and we had no opportunity for any kind of spontenaiety.  She absolutely drives me crazy sometimes I cannot have any privacy unless I leave the house and I do, a lot!  I do Zumba 2 times a week, Pilates 1 x a week and I got out to lunch with lady friends at least 2 times a week. Anyway, like all the rest I'm 3 1/2 years out from my diagnosis and I'm waiting for the recurrence to hit.  Like some have said, it would almost be a relief because I know it's going to happen at some point.  Does this sound pessimistic? I like to say I'm being a realist. Oh well, go through cancer, chemo, loose your hair, feel sick all the time, have chemo brain and see how much fun it is.  I also had to take care of mom who had broken her hip 18 days after my hysterectomy.  I had to do chemo and take care of her.  After chemo it would have been nice to have someone fix me a bowl of soup.  I had to be the "soup fixer".  Don't get me wrong I had friends drive me to chemo, doc appointments, clean the house etc.  It was just that I couldn't take care of just me and just lay around. And I have a brother who lives 2 hours away who wouldn't help at all. Oh well.  I guess I'm having a pity party tonight!

pinky104 said:

Ovarian vs. UPSC

When I was getting my results a week or so after my surgery four years and almost 7 months ago, my gyn/onc told me he had originally thought my cancer was ovarian cancer.  However, he ran my case by a tumor board at the hospital, and the consensus came back that it had started in my uterus. 

A few days ago, my sister went to see a different oncologist at the recommendation of her family doctor.  The family doctor had seen in my sister's records that my mother had breast cancer twice (two different spots in the same breast), and my mother's mother had breast cancer that was bilateral.  The family physician rcommended that my sister see an oncologist to test for the breast cancer gene and see if she should have her breasts removed as a preventative measure. When she went, she told this person that I'd had UPSC which had mets to both ovaries, the omentum, and the small intestine.  The nurse practitioner said my cancer threw a monkey wrench into the whole story. She thought my cancer had probably been misdiagnosed.  Apparently, ovarian cancer goes hand in hand with breast cancer caused by the breast cancer gene defect, but UPSC does not share this pattern.  When I go back for a recheck of my latest mass, I think I'll ask my gyn/onc how the tumor board decides where the  cancer starts.  I wonder if there's a difference in the size or quantity of cancer cells, or if they can tell which ones are more mature somehow. It'll be interesting to find out.     

While I am not intimately familiar with the details the common things I have read on it include history of uterine, colon, breast cancers.  And it crosses male and female on the colon.  Worth checking out.  I have been tested for it and a variety of other things lately via genome testing.  I was told I "hit" on 20 possible defects out of thirty.  Awaiting a meeting with a genetic counselor at UCLA.

AWK said:

60 Minutes tonight 12/7

If you can check out the segment online it is about genomic testing and this particular physician's view that type of cancer is the driver and not necessarily the location of the cancer.  My team follows that school of thought.  The common denominator is that my doctors here, along with the physician profiled - are all from UCLA.  although my broader team includes doctors from MDAnderson, NIH/NCI, Sloan Kettering and now Dana Farber has been added to the list of consultanting physicians.  Super interesting!

I saw the clip at the beginning of the show and there was nothing that was going to keep me from seeing that piece!  Please GOD, let him be on the right path!!!