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uterine papillary serous carcinoma

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

i joined the group a bit ago. just wanted to kind of say hi in a new thread. 

my mom was diagnosed in 8/ 2012 with uterine papillary serous carcinoma.  very surreal, and ~even though we are hopeful, still scary. 1st time around she had a total hysterectomy 6 rounds of chemo, and radiation. 

she is currently in recurrance.  has just completed 3rd chemo treatment for st 4. this week, she goes in for a scan, we find out in about a week and a half if the chemo is shrinking the tumors. the tumors are on her esphogus, kidney, lungs, abdomen, and some  swelling of the lymph nodes. 

even though ,the fact that this discussion board is necessary, even has to be here is rotten~it  is , so helpful to read the posts from all of you living, and thriving with cancer. all of this, gives hope. thank you

blessings, jennie

nempark
Posts: 683
Joined: Apr 2010

I know how you feel Jennie I have been through this and when I was just recovering my daughter was diagnosed so I definitely know how you feel.  I can only tell you to hang in there and let's hope for the best.  I always remember what Maya Angelo said "however bad it seems today, life goes on and it does get better tomorrow. Love mom, give  all you can, give her big hugs and tell her how much you love her.  I remember when my daughter was diagnosed the first thing I did was to tell her that I was sorry and I apologize for anything that I said or did that hurt her.  So talk to mom, love her and discuss everything under the sun.  None of us know how things will turn out, so the best thing for us is to just love love and love mom.  Please let me know how she is doing and don't forget to take care of yourself. 

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

thank you.  sorry it took so long to respond. i am not so tech saavy, and it took me awhile to figure out how to  find this discussion again. thank you for your input. i hope all is going well with your daughter.  my mom just finished her 5 chemo.  she is scheduled for 6, and if all goes well, she will do one every 21 days- a lesser dose. glad there is a plan; but hate that it is chemo every 21 days. hate what chemo does to the healthy cells. 

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

and yes, we are spending lots of time with eachother. so grateful to have this time with her. we have always  expressed our love, and had good conversations~but lately~ i see the parts of her in me, that are her completely..like i am bits and pieces of her and my father, and it makes me.. i see where she exists in me~how much i have counted on her my whole life, and still do. i have always admired mymother, and tried to do things that make her happy.. with the exception of a brief period in my 20's where i rebeled.. i was a late comer to the teen age rebellion, i think. then when i woke up from that, i just accepted, i still want to make my parents proud. i am now 53 years old..both my parents told me they are proud of me, which is nce~but i still try to make my om happy by doing little things, i know she wants done, or can not do. it's o.k.  with me that i try to pease her. i know a lot of pole write books about breaking free from our parents and all that; but why?  what's so wrong with enjoying parents as people? mine weren't perfect; but they were perfect for me.. i learned a lot, and had a lot of fun with them. still have great fun with ,y mom. she always insistes on making everything, a kind of celebration, or event. doesn't like to wallow in sadness. feel it; but live. she has always been this way. i am lucky.  i pray we get to grow older together. i pray this works~ and gives us a bunch more time. 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Your mom and I are on the same journey in many ways.  I was also diagnosed in 8/12 but with ppillary serous endometrial adenocarcinoma. I have had 2 periods of remission but am also undergoing a reacurrence.

Family is so important.  i am glad your mom has a caring daughter.  Your support must mean the world to her.  I know how much the support and love of my children mean to me( One of them is also a Jennifer).  As you know, cancer is not easy, but I have found that the life I have now is pretty awesom as families become closer.  Prayers and hgs for your mom and you.

P.S.  I think sometimes this is harder on our loved ones.

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

thank you lou ann. how are your treatments going?

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I had chemo #20 on Tuesday, the 3rd of Doxil.  So far each time the side effects have been very different so I am still not sure what to expect.  After the next Doxil. I will have a Cscan and and an echocardiogram.  Hopefull they will show some progress.  i am so blessed with a wonderfull family as i know our mother is.  Prayers and hugs to both of you.  Lou Ann

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

hi lou ann,

i hope all is going well for you, and the doxil is proving effective.

my mom has just started doxil last week. she did thesecond, 6 rounds of heavy, then started avastin maintenance .. got 2 treatments into them, and we see that tumors are not shrinking, grew 25 %~so her dr asked if she would like to start doxil, give it a try-- or, as the dr said, if there was anyhting else you wanted to try, this would be the time. ... alternatives. 

we are starting simpson oil, carrot juicing as well. can't hurt~ and for now the doxil. (she already takes liquid chlorophyl to help with oxygen, and alkeline. it works well for her, and vit. c, and beat juiceing for kidney inflamation)

dr says she is not sure if there is 3 mos. 6 mos, or a year.. depends how she does with doxil, and if it can slow them down. 

we are also considering dca (sodium dichloracetate). my dad was on that; but did not llive long enough for it to kick in.

forgive me for saying this, if it sounds hard~ but so hard to believe potential better treatments exist.. like virus therapy- that all cancer patients with few options can't have access to now. 

if virus therapy continues to do well in  the rest of trials.. and is the mode of therapy in the future~so unreal to think those that would agree to it, could not get it now.

it seems like a pipe dream.. virus therapy.. so close, and so far. sorry, if i sound morose. don't mean to .. staying positive mostly, and enjoying our time together..but some days .. are tougher.

God bless, check in with all of you soon. thank you for keeping in touch. so grateful people are there.

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

hi , i was just wondering how the doxil went? how are you?

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Doxil is working, but working slowly,  One new tumor in my chest, but ones in my abdomen shank a little, So I will call that good news.  I usually have 2 weeks of feeling miserable and two weeks of feeling pretty good.  Last time around we were able to make a rather long trip to IL. to see ancient relatives.  I am also lucky to have a daughter, Jennifer, That is loving and caring like you are to your mother.  She is truely blessed to have  you.  Sending prayers and hugs for both of you.  Lou Ann

AWK
Posts: 364
Joined: Mar 2013

I have been thinking about you and hoping you were responding to it.  Glad you got away; we all need those breaks.  Hugs - Anne

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

sp glad yhe doxil is working for you

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2599
Joined: Mar 2013

Jennie, thank you for posting.  Please know many of us could not make it through all the diagnosis, surgery, and treatment without the love and support of our family. There is nothing like your family who knows how you like your food prepared or house cleaned, or anything like that. 

You, your mother, and your family are in my prayers.

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

hi, thank you for your input. i have read a lot of your posts. i don't post a lot; but i read alot. these discussion boards are so helpful. it feels awkward being a family member posting, i guess that is why i don't respond, or post; but with my moms diagnosis~ i find these posts on the discussion boards, specifically the upsc boards really hopeful, and helpful. thank you

Jeannemae
Posts: 4
Joined: Sep 2013

Wife was diagnosed with the above August 2013. After six round of Carbo and Cisplatin went to two other drugs for three more treatments then brachytherapy . Has matasticized to sitz bone, femur and brain with five lesions. We have traveled extensively through out this journey to Europe, scandanavia and Russia but I fear things are coming to a halt. Wife walking with noticeable limp, is now in radiation for brain and I am near tears every day. Has anyone survived with metasticized brain tumor? Hoping for tomorrow becoming increasingly hard to do. Have been married for 48 years and would be so greatful to make 50.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2599
Joined: Mar 2013

Jeannemae, I suspect that may be your wife's name, so let me tell you I am so sorry to hear everything you and your wife are going through.  I can't imagine what you are going through and while I know the women here will chime in with their support, I hope you can find someone to talk to to help you.  My prayers for you and your wife.

soul-mate's picture
soul-mate
Posts: 82
Joined: Feb 2014

http://csn.cancer.org/node/294682 this is a post from ovarian cancer discussion boards. Yes to your question about mets to brain. Hope this gives you a bit of light at the end of the tunnel. Best wishes on this journey.

SOUL-MATE

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

God bless you both..

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

hi, i wanted to  check in with everyone, see how you you all are, and how treaments are going. hope all are well. blessinsg, j

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

how are you both? i don't know if this helps you at all; but we have my mom on suppleents, as drs have released her bascially, saying see you~ but there are so many supplements out there. worht a try. how are you?

AWK
Posts: 364
Joined: Mar 2013

How are all of you doing with this?  Is your mom a candidate for clinical trials or even interested in going that route?  I just started one last week.  We will know by early September if it is working or not.  Sending hugs.  Anne

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

hi awk/ anne,

very much looking forward to hearing how you are doing with your clinical trial. i wish you prayers. please let  us know when you know anything.

 we did go to a clinical trial onc. a few days ago. she recommended an immuno/chemo trial for my mother, that my mom is applying for. seems there are not a lot of trials for upsc, as there are not a lot of people with it, as we all knnow..  i was  trying to find a clinical trial with the viro therapy at penn, or mayo etc. but as perhaps  guessed, so liitle of this group, not enough to clinical trial. basically when i spoke to them they said they clinical trial cancers they feel will benefit the maximum amount of people. i get it. it makes sense; but hard reality to hear.

   the doxil seems not to work on my mom, her tumors are growing, so she is now taking simpson oil, dca, and avemar.. as well as liquid chlorophyll , b-12, milk thissle, and a few other homeopathics, in hopes this will slow it down a bit. ( we looked into rigvir, and gcmaf, and a few other things~ anyone have experience with that?)

chemo dr pretty much said, doxil isn't working. i'm not God, so i can not say for sure; but judging by your tumor growth, and multiplication~  you have somewhere between 3-6, 11 months.  i feel perhaps, you may not make it passed the end of this year.  please enjoy the time you have with your children, and  consider, not wasting time looking for cures that do not exist.  i suppose it's an odd thing; but honest to say~. i do believe she is in my moms corner and has my moms back~ but i also believe onc, and mds only know a certain aspect of cancer fighting.  i believe there is so much out there to consider in ways to help heal from cancer. especially at this time with viro therapies in clinical trial at penn, and mayo, and other research hospitals-and immuno-therapies, we are at a game changing time with new, and hopeful therapies being developed.

for my family, we for sure, are not ready to give up on my mothers life yet. we know the possible reality facing us, but all of us have been researching on line, therapies i am sure all of you have been reading about, and/or trying as well.

  how disgusting that some humans would try to take advantage of others, scam people  at this point in their lives, with false cures, and treatments ~ just to make money.

weeding through the nonsense takes up such valuable time in finding hopefully, some things that might work~  anyway, that is where we are at with our journey~hoping for a miracle, as i am sure, we all are in each of our individual, and as a group~ journies~ how wonderful it would be  to be able to stay around long enough, with some sort of slowing therapy, until who knows, maybe the virotherapy gets properly tested, and approved, and everyone is still here to get that therapy~.

so here we are for today. in this surreal adventure.

i am sitting at the dining room table, i can hear my mother talking on the phone in the family room. i hold on to this moment. i cherish it, and i pray it multiplies beyond my expectations.

she's off the phone ow, so i am going to go in.

 thank you all for being on this site.  not having to keep a stiff upper lip, knowing you completely understand this ... no judgement, has been  a blessing. i mentioned before, sometimes i just come on and read, no commenting or signing in because i forget my password. so helps to read, and relate to all of you.  so thank you again, until next time.

blessings, jennie

 

AWK
Posts: 364
Joined: Mar 2013

So sorry to see this.  Doxil didn't work for me so we moved on to single agent Avastin for 12 treatments.  That kept my tumors stable up until my last scan.  Meaning no new growth but no reduction in size.  My notes from doctors appointments reflect phrases such as progression free survival times or the number of months without progression.  The doctors goal, and mine, is to string together a series of treatments back to back that extend that PFS.  To make this a chronic disease.

In terms of clinical trials I am in one that is being tested across a variety of cancers.  In my case the trials the oncologists look for mirrored either certain characteristics such as no response to two lines of chemo, inoperable and all mets are solid tumors or in other cases my genomic mutations that are targeted are in the trial.  I am the only uterine patient in my trial although there are ovarian, lung, etc in it.  There isn't much of anything specific to UPSC out there, I have it too.  So start with a broad net.  There is a trial out there for Cabozantinib that might be worth checking out.  I was pulled out the day before I was due to start because of a met on my heart.  

there is another thread out there talking about when to stop treatment.  This is something we discussed with my doctors awhile ago and in my mind it is when the treatments start to cause other problems that aren't temporary or of course if and when my disease progresses in an uncontrolled fashion.  I went through this with my father years ago and really thought it out.  The last four months he had with us he wasn't in treatment and we had great conversations, he spent time with long term friends and his siblings, my parents went to Epcot and Disneyworld.  My siblings and I agree that the time was important although very painful too.  

 You are a blessing and comfort to her as is your family I am sure.  I wish we could do more for you here.  Sending prayers and hugs and as our friend Ro always signed off - in peace and caring.  Anne

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

So sorry to hear this. My thoughts and prayers are with your mother, you and your family. Keep making good memories and checking into research.  Just because the medical community says you have so long does not always mean that it is true.  A friends father in law was told 4 years ago that he had 6 months and he he still amount us.  My father and grandmother both lived over a year after they were told that their time was very limited. New treatments are on the horizon.  Lou Ann 

pinky104
Posts: 574
Joined: Feb 2013

You're so right about estimates of death.  My dentist's father is in his 90's, has lung cancer, and has refused any treatments.  He's lived 3 or 4 years beyond what he was told to expect, and he's no worse.  My father had a heart attack at 42 and was given 6 mos. to live.  He lived another 42 years!

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I am always amazed when doctors give a time frame for when a person will die. My gyne oncologist told me two months ago that I could "expect a reasonable quality of life for two more years- maybe more". I guess he is trying to prepare me for the inevitable recurrence as I was diagnosed with UPSC, stage 3a. It has been almost 2 years since learning that I had adenocarcinoma. I don't know to what extent I will fight this disease. If I am going to die from this anyway, what is the point of the debilitating treatments?  Not sure what I would do.

I do hope that you, Anne, and Lou Ann and jennie's Mom and soul mate's wife respond well to treatment.

My father was diagnosed with 5 separate cancers in his lifetime: prostate; urinary bladder; lymphoma; basil cell skin cancer and squamous cell skin cancer. He died from old age, just shy of his 98th birthday! The point is, nobody has a crystal ball.

Cathy

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Great response Cathy!

It just urks me when doctors tell patients when.   If they can tell when, then they can cure it too then.   They play a guessing game and only look at statistics.   Well like someone here said, your a statisic of one!

I think doctors should give us their advice and opinions, but I think its up to the patient what is best for them.  

My best to you, Cathy!

Kathy

Maggie_mac
Posts: 32
Joined: Mar 2012

When I was diagnosed with UPSC stage IVb, almost 4 years ago, I found information on line that the 5 year life expectancy for this Dx was between 9% and 18%.  When I met with my chemo oncologist for the first time, he volunteered, without my asking, that he could not estimate my longevity.  He told me I was a sample of 1 and no estimates would be valid.

This prognosis helped me live and enjoy every day.  In the last 4 years I've had a step daughter marry a wonderful guy and deliver two equally wonderful little boys.  Like everyone else, both here and everywhere, we don't know when our earthly mission will be completed.  I try to live my life here to the fullest, and trust that tomorrow I'll be where I belong.      

AWK
Posts: 364
Joined: Mar 2013

For all I have gone through and the tons of doctors appointments, consults etc I have never asked about prognosis.  I am much more interested in living and moving forward.  But that doesn't diminish my family's fear nor concern.  My job is to keep us all on that path of new memories but to let them share their fears too.  We have had many poignant moments over the last two plus years and will have many more ahead.  Next year alone we have a wedding, a new baby on the way and a big trip planned ( come hell or high water according to my husband).  I have learned to live more in the moment through all of this and because of that I have had amazing experiences.

hugs to all.  Anne

Lou Ann M's picture
Lou Ann M
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Joined: Feb 2015

I also have never asked about life expectancy, and none of my doctors have brought it up.  All three seem to agree that I will be on chemo the rest of my life, but they also agree that I could remain stable for a Long time.  They used to mention chemo holidays but not so much anymore.  I will live life fully while I can.  Trip to the coast in Sept.  New great grand baby in March and do hope my 33 year old decides to get married at sometime.  4 kids and only 2 grandkids, seems like I am getting cheatd a little.  Hugs and prayers Lou Ann

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

yes, agreed

pinky104
Posts: 574
Joined: Feb 2013

That's pretty amazing that he survived all those different types.  I've had two, basal cell carcinoma and UPSC, and I feel luck to have survived those.  All those diagnoses must have been unnerving to him.  A nurse in my mother's nursing home years ago told me that people who live very long lives are almost always very stubborn.  They have to be to live that long.  Your father must have had great determination to get past all those obstacles and die of old age.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

My Dad aged slower then other people. When he was in his early 90's, he used a gas powered chain saw to remove 5 or 6 massive trees. They were an invasive specie and should never had been planted in the first place, but still- IN HIS 90's! He had such energy. He didn't seemed worried about cancer and perhaps his daughter should take note of that! On 11/20/13, I asked my oldest sister to tell my Dad that I had cancer (as he lived with her) and she told me she just couldn't do it. He passed away later that same day.  

Lou Ann M's picture
Lou Ann M
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Joined: Feb 2015

What a stong stong man.  I am sure he knows and is in your corner.  He would have understood.  My 95 year old mother-in-law knows I have cancer and understands quite well.  She still sneaks out and digs up her flowers and moves them when no one is watching.. I think people of their generation are much stronger than we are. Lou Ann

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

i love reading that cathys dad made it to 98. that is awesome. my mom got accepted to a clinical trial. began tests for it today. it will be a life long thing. 10 weeks, then every 21 days for life... which we have hope and pray will be for years to come. it is an immunotherapy trial at fox chase.  

Lou Ann M's picture
Lou Ann M
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Joined: Feb 2015

So glad that your mom made  into a clinical trial.  Hoping it helps and she goes on for years and years.  Her successes will benefit all of us.  Hugs and prayers  Lou Ann

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

I am glad to hear that your Mom has been accepted into a clinical trial. I wish both you and your Mom the very best. She truly is blessed to have such a loving and supportive daughter- you!

Wishing all of you the best! 

Cathy

 

 

AWK
Posts: 364
Joined: Mar 2013

When you are comfortable would you mind sharing some information on the trial?  it is helpful to the rest of us - the name, research number or drugs involved would be great.  The trial I am currently in is for Aldoxorubicin and Gemzar; patients with solid metastatic tumors that are inoperable and have failed at least one or more lines of treatment.  I failed three - so To speak.

Good luck to you and your family.  Keeping her, and all of you, in my prayers - Anne

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

      clinical trial didn't work~   worked for the first 2 treatments, then  the tumors started growing again. we aren't sure what we are going to do now. she is not eligible for a clinical trial, as right now~ well, they don't know if she will be  around long enough to do a trial. and  her dts say there us no traditional therapies now that will work.

      i don't know, as her child~i can never give up on her. i can not give up praying for healing. 

this is what we are doing now , and searching for alternative treatments~

we may start her on mistletoe this week.

anyone have any luck with alternative treatments, mistletoe, GcMAF, any other suggestions. we are now at the point .. i guess where it is easy to be scammed because we just want to help her heal from this cancer  ... we are praying a lot.. i am at a loss for what to do

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

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.

hermothersdaughter's picture
hermothersdaughter
Posts: 29
Joined: Feb 2015

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?

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

"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's picture
melchick13
Posts: 2
Joined: Feb 2016

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

 

 

 

RK_in_NY's picture
RK_in_NY
Posts: 1
Joined: Jan 2012

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's picture
Abbycat2
Posts: 644
Joined: Feb 2014

 

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's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

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

Peggylee
Posts: 13
Joined: Jul 2016

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

Gmascookie
Posts: 5
Joined: Dec 2016

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. 

 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

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's picture
TeddyandBears_Mom
Posts: 1556
Joined: Jun 2015

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

melchick13's picture
melchick13
Posts: 2
Joined: Feb 2016

Sloan Kettering is known to be the very best!

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