uterine papillary serous carcinoma

RK_in_NY

Experts in UPSC

I am new to this discussion board.  I was diagnosed with UPSC and treated in 2012.  In 2013 it recurred and metastacized and I have been under treatment ever since.  We know that UPSC is so rare that there is little research.  I must be one of the very few, and perhaps only, UPSC patient in my gyn-oncologist's panel.  I'm concerned that he may not have time to steep himself in the latest developments.  Can anyone tell me centers or oncologists who specialize in UPSC or who treat real volumes of UPSC patients?  Are there any recognized centers of excellence? If yes, do you know any in the NYC metropolitan area?  Many thanks!

Abbycat2

RK_in_NY said:

Experts in UPSC

I am new to this discussion board.  I was diagnosed with UPSC and treated in 2012.  In 2013 it recurred and metastacized and I have been under treatment ever since.  We know that UPSC is so rare that there is little research.  I must be one of the very few, and perhaps only, UPSC patient in my gyn-oncologist's panel.  I'm concerned that he may not have time to steep himself in the latest developments.  Can anyone tell me centers or oncologists who specialize in UPSC or who treat real volumes of UPSC patients?  Are there any recognized centers of excellence? If yes, do you know any in the NYC metropolitan area?  Many thanks!

RK_IN_NY

 

Good Morning, RK, and welcome to our uterine cancer site.  I would much rather meet you elsewhere and am sorry to hear that your cancer has progressed.  I live in Florida and can go to Moffit if my remission ends and my cancer progresses.  If I lived in the New York City area, I would definitely go to Memorial Sloan Kettering Cancer Center as it is highly rated.  I doubt if you will be able to find a facility or even a gynecologic oncologist who specializes in treating UPSC.  As you said, it is rare, and from my calculations approximately 17 to 34 women in every million in the US are diagnosed with it each year (About 54,000 women are diagnosed with the various types of uterine cancer each year in the United States.) .  It is never good to have a rare form of cancer as research money is spent on evaluating possible treatment for more common cancers. In our case, endometriod endometrial adenocarcinoma. Treatment for cancer is "evidence based", so we tend to be treated with the same protocol as women with ovarian cancer. Almost all women with UPSC are offered Taxol/Carboplatin chemo combination whether or not these drugs will prove effective.  Breast cancer research seems to get the lion's share of the research dollars in an effort to "find the cure" for this type of cancer.  Not so much for uterine cancer.   I was Dx with UPSC, stage 3A. 

I wish you the very best,

Cathy

EZLiving66

RK_in_NY said:

Experts in UPSC

I am new to this discussion board.  I was diagnosed with UPSC and treated in 2012.  In 2013 it recurred and metastacized and I have been under treatment ever since.  We know that UPSC is so rare that there is little research.  I must be one of the very few, and perhaps only, UPSC patient in my gyn-oncologist's panel.  I'm concerned that he may not have time to steep himself in the latest developments.  Can anyone tell me centers or oncologists who specialize in UPSC or who treat real volumes of UPSC patients?  Are there any recognized centers of excellence? If yes, do you know any in the NYC metropolitan area?  Many thanks!

Welcome, RK!  Although, as

Welcome, RK!  Although, as Abby said, these are not the conditions I would choose to meet.  I'm sorry I have no idea where to find a UPSC expert although my PA told me that the two ladies prior to my appointment one December morning also had UPSC and we are in Green Bay, Wisconsin.  She said it's not that rare of a cancer in our "neck of the woods."  I wish there were some kind of exact numbers so I could see if it does tend to be grouped in certain areas of the country.

Anyway, this is a wonderful group of ladies!

Love,

Eldri

Lou Ann M

RK_in_NY said:

Experts in UPSC

I am new to this discussion board.  I was diagnosed with UPSC and treated in 2012.  In 2013 it recurred and metastacized and I have been under treatment ever since.  We know that UPSC is so rare that there is little research.  I must be one of the very few, and perhaps only, UPSC patient in my gyn-oncologist's panel.  I'm concerned that he may not have time to steep himself in the latest developments.  Can anyone tell me centers or oncologists who specialize in UPSC or who treat real volumes of UPSC patients?  Are there any recognized centers of excellence? If yes, do you know any in the NYC metropolitan area?  Many thanks!

welcome

So sorry that you had to come here, but glad you found this spot.  The ladies here are wonderful with advise , encouragement, and information.  I wish I had some for you.  If you were looking for someone in Montana I could tell you where to find the best.  I don't know if my cancer center has anyone else with the same diagnosis, but my doctor is sure up to date on treatment, and I feel I could not get better more caring treatment anywhere.  I hope you find a good place.  Hugs and prayers, Lou Ann

TeddyandBears_Mom

Lou Ann M said:

welcome

So sorry that you had to come here, but glad you found this spot.  The ladies here are wonderful with advise , encouragement, and information.  I wish I had some for you.  If you were looking for someone in Montana I could tell you where to find the best.  I don't know if my cancer center has anyone else with the same diagnosis, but my doctor is sure up to date on treatment, and I feel I could not get better more caring treatment anywhere.  I hope you find a good place.  Hugs and prayers, Lou Ann

RK

I also welcome you to the board. Sorry I don't have any information for the NY area. I like Cathy's input though. :-)

I hope you find someone that is caring, knowledgable and keeps your best interest in mind every time!

Love and Hugs,

Cindi

Editgrl

hermothersdaughter said:

****n 853~ for some reason

imgn 853~ for some reason when i write this, it keeps blotting out the letters

i m g n  853  -- maybe it's blotting it out because it is in clinical trial?

I think it's because

"i-m-g" is often part of the file name for photos or images and I don't believe the site allows those to be posted within the board.  Just for giggles I tried just entering img  (those letters in sequence) and it blocked it out.

melchick13

hermothersdaughter said:

the trial is at fox chase in

the trial is at fox chase in phila.  it is a targeted chemo trial.  imgn 853  it works for some, and not for others like most things.  

fox chase is really an excellent place to go.  they are not only very knowledgable which of courseyou need a cancer treatment place to be~, but also very comforting, and a comfortable place to be for patients.

 we were at penn for a bit with my mom, and also with my dad. penn was really not as comfortableand when they were done.. they were done kinda, but they are good~ 

anyway, i have someone at penn med who looks up clinical trials for me. so far my mom was not eligible for any of them~except this one at fox. fox chase you may already know has a whole cancer research unit. if anyone is interested, you might want to check with them.

Fox Chase Trial

Hi everyone! I am new to these boards but have been reading your posts for a long time.

My mom was diagnosed with hpsc in late 2013. She had a full hysterectomy and went through 6 rounds of chemo and 28 radiations. It has now come back. She just had a 3.5 cenimeter tumor removed from her abdomen and they found cancer cells in her omentum. I am trying to research what should be her next course of treatment. Her oncologust at Abington Memorial Hospital recommends more chemo. She may be a candiate for a trial using Hormonal Therapy (Tamoxifen/Medroxyprogesterone) or Everolimus and Letrozole. We have to wait for her catscan to come back to see if she even qualifies for the trial. Her incision is still healing and doesn't look great. It's red and bumpy and her oncologist has even shown concern that the cancer possibly came back already in that area (her surgery was on 1/25/16). So, I'm scrambling.....wondering if we should get a second opinion. Just like everyone else on here I want her to get the latest, most effective treatment for her particular case. Please enlighten me on anything that is new and working. I live very close to Fox Chase and can easily take her there or Penn if need be.

Thanks so much!

Melanie

 

 

 

melchick13

RK_in_NY said:

Experts in UPSC

I am new to this discussion board.  I was diagnosed with UPSC and treated in 2012.  In 2013 it recurred and metastacized and I have been under treatment ever since.  We know that UPSC is so rare that there is little research.  I must be one of the very few, and perhaps only, UPSC patient in my gyn-oncologist's panel.  I'm concerned that he may not have time to steep himself in the latest developments.  Can anyone tell me centers or oncologists who specialize in UPSC or who treat real volumes of UPSC patients?  Are there any recognized centers of excellence? If yes, do you know any in the NYC metropolitan area?  Many thanks!

Sloan Kettering is known to

Sloan Kettering is known to be the very best!

NoTimeForCancer

RK_in_NY said:

Experts in UPSC

I am new to this discussion board.  I was diagnosed with UPSC and treated in 2012.  In 2013 it recurred and metastacized and I have been under treatment ever since.  We know that UPSC is so rare that there is little research.  I must be one of the very few, and perhaps only, UPSC patient in my gyn-oncologist's panel.  I'm concerned that he may not have time to steep himself in the latest developments.  Can anyone tell me centers or oncologists who specialize in UPSC or who treat real volumes of UPSC patients?  Are there any recognized centers of excellence? If yes, do you know any in the NYC metropolitan area?  Many thanks!

RK, I am sorry to hear your

RK, I am sorry to hear your cancer has recurred but glad you have found us.  I am near the end of the book"The Death of Cancer", which is written by a former head of NCI, and he says there are some hospitals that really handle some cancers better than others.  I read DESPERATELY to see if he mentioned a hospital that is the "go to" hospital for gynecologic cancer, but alas, he did not.  If you are in NYC I think you really have a great selection to pick from.  Sloan and Albert Einstein are NCI designated cancer centers in the NY area.

 http://www.cancer.gov/research/nci-role/cancer-centers/find

 

Peggylee

EZLiving66 said:

Welcome, RK!  Although, as

Welcome, RK!  Although, as Abby said, these are not the conditions I would choose to meet.  I'm sorry I have no idea where to find a UPSC expert although my PA told me that the two ladies prior to my appointment one December morning also had UPSC and we are in Green Bay, Wisconsin.  She said it's not that rare of a cancer in our "neck of the woods."  I wish there were some kind of exact numbers so I could see if it does tend to be grouped in certain areas of the country.

Anyway, this is a wonderful group of ladies!

Love,

Eldri

EZLiving66 2/16 post

I read some older post and came across your comments 2/16.  Re: WI, when I met with my oncologist surgeon 7/21/16, he stated a patient prior to me was also dx with papillary serous that day.  This was in Madison, WI.

I didn't mention previously, while in the hospital as an "outpatient," two different nurses or CNA's said, "oh you had a hysterectomy, now your a man."  Being I'm 71, it didn't bother me as much as a woman who may have been child bearing age....  quite tasteless.

As I stated previously, pathology stage 1B, 67% into uterine wall, lymphatic vascular invasion present.  Being I did not have them remove lymph nodes,  I'll be giving into chemo soon.  It seems some of you had a ct-scan or pet-scan prior to chemo.  Two doctors said it's too soon due to scar tissue and healing after surgery.  Also, some woman are using a "cooling cap" and they don't loose their hair.  My oncologist said it could stop the chemo from preventing brain cancer.  Friend of mine said, she knows of a lady that used it and is now helping others that are having chemo....  who knows.

I spoke with a woman today that was cured from breast cancer with immunotherapy.  Any updates on trials for UPSC???

Hope everyone is doing well.

Peggylee

henhill

Hello to all-

Hello to all-

I just joined this board after suffering a recurrence.... only 4 months after I completed treatment.  I have stage 3a UPSC and recieved standard Taxol/Carboplatin followed by radiation, followed by brachytherapy.  Now, I have 4 spots in my para aortic lymph nodes, but was told they are so small I should forgo therapy at this time.  I am just coming around to accepting that I now have to "live with cancer", and hope that I can share information on here with you folks.  MGH in Bosaton has the new Immunotherapy trial going on, this is the medication that is keeping Jimmy Carter alive.  It is a MERCK product and I was told that it is being used for UPSC in case anyone here is interested in that route.  My doc said he thought it was a "down the road" medication for me, since I am having no symptoms and my tumors are barely visible.

TeddyandBears_Mom

Hi Henhill,

Hi Henhill,

So sorry to hear about your recurrence. That must be scary to know it is there and be on a wait and see kind of thing. A couple of our ladies here are on immunotherapy now.  Hopefully they will see your post and offer up some advise or information for you.

I hope you continue to have zero symptoms and the tumors stay small for a long time.

Love and Hugs,

Cindi

henhill

Thanks... scary is too mild!

Thanks... scary is too mild!  But I am coming around to a personal "truce".  I am not sure about the "no treatment at this time", but my oncologist in 

providence is on vacation, so I won't know why until then.  I suspect that once you are "palliative" care there is no chasing a cure after that.

 

Kvdyson

henhill said:

Hello to all-

Hello to all-

I just joined this board after suffering a recurrence.... only 4 months after I completed treatment.  I have stage 3a UPSC and recieved standard Taxol/Carboplatin followed by radiation, followed by brachytherapy.  Now, I have 4 spots in my para aortic lymph nodes, but was told they are so small I should forgo therapy at this time.  I am just coming around to accepting that I now have to "live with cancer", and hope that I can share information on here with you folks.  MGH in Bosaton has the new Immunotherapy trial going on, this is the medication that is keeping Jimmy Carter alive.  It is a MERCK product and I was told that it is being used for UPSC in case anyone here is interested in that route.  My doc said he thought it was a "down the road" medication for me, since I am having no symptoms and my tumors are barely visible.

Henhill, so very sorry to hear of your recurrence. Thankfully the spots they found are small. There are some others who post on this site whose spots disappeared or decreased after more treatments. Hoping that your doctors are able to come up with a good plan to help you beat back this beast! Kim

Gmascookie

Peggylee said:

EZLiving66 2/16 post

I read some older post and came across your comments 2/16.  Re: WI, when I met with my oncologist surgeon 7/21/16, he stated a patient prior to me was also dx with papillary serous that day.  This was in Madison, WI.

I didn't mention previously, while in the hospital as an "outpatient," two different nurses or CNA's said, "oh you had a hysterectomy, now your a man."  Being I'm 71, it didn't bother me as much as a woman who may have been child bearing age....  quite tasteless.

As I stated previously, pathology stage 1B, 67% into uterine wall, lymphatic vascular invasion present.  Being I did not have them remove lymph nodes,  I'll be giving into chemo soon.  It seems some of you had a ct-scan or pet-scan prior to chemo.  Two doctors said it's too soon due to scar tissue and healing after surgery.  Also, some woman are using a "cooling cap" and they don't loose their hair.  My oncologist said it could stop the chemo from preventing brain cancer.  Friend of mine said, she knows of a lady that used it and is now helping others that are having chemo....  who knows.

I spoke with a woman today that was cured from breast cancer with immunotherapy.  Any updates on trials for UPSC???

Hope everyone is doing well.

Peggylee

CNA/nurse comm

hi peggylee. This is my first post here. My mom has USPC and received the same comment about her gender "transformation". So rude. concerning because these people obviously don't get it. Sorry you had to hear that unintellible comment. We're also in Madison & I might guess you have the same dr. Rose? curious to know how you are, what treatments you've done, etc. my mom's recurred late this summer. She isn't up for another round of chemo given the poor results. I'm hoping to hear some positive treatmeant results. She's been doing Gerson diet, Budwig, IV vitamin C but I can feel a lump on her neck. Maybe time to reconsider conventional treatments.