Uterine Papillary Serous Carcinoma (UPSC): any others here???

Mannhill

Nina_Canada said:

My Mom has UPSC
Hi,

My mother who is 74, and in excellent general condition, was diagnosed with UPSC and was operated on February 1st. She was stage 3C, at least that's what they are saying. She started quickly on carboplatin/Taxol chemo for 6 cycles. She had a PET scan just before her 4th cycle, which showed 4 tumors still in her abdomen.

She finished her 6 rounds of chemo, and then had another PET scan, which showed the exact 4 tumors, at the exact size they were in. It seems they did not shrink from the chemo, but remained the same.

Her oncologist directed her to the surgeon for resection of the tumors, but the surgeon asked for something called a Diffusion MRI, does anybody know about this? The news from the diffusion MRI was horrible. She has over 6 tumors in her abdomen, one located inside her colon. she is in constant abdominal pain, and there is fear for her liver because two tumors are located one in front of and one behind the liver. The Chemo was totally inefective in shrinking the tumors, only kept them at a standstill. Once the effect was off and she starte having hair growth, the cancer started very agressively to grow in her abdomen.

The surgeon said that because the cancer is so spread, it is not possible to operate her. Her oncologist established another regimen of Gemcitabine and Docetaxel to be taken every 21 days, for an undetermined number of cycles. On day 8 of every cycle, she takes Gemcitabine again.

I am really worried about my mom. I have read and researched Gemcitabine and Docetaxel repeatedly, but didn't find any reference to them being used for UPSC. I find them often linked to Sarcoma, but not to UPSC. Does anybody know about this?

Thank you so much for your site, and for the beautiful positive messages contained in it. You give us all hope. I will keep all of you in my prayers.

Nina

My mom too
My mother (late 70s) was also recently diagnosed with UPSC following a radical hysterectomy. Cells found in lymph nodes removed at the same time. We are waiting for the results of the surgeon's conference with colleagues this coming Wednesday, but the surgeon has said she thinks they will recommend 6 chemo treatments (3 weeks in between). We are feeling a bit in limbo at the moment, and I'd like to be armed with all the questions I should ask the doctors on Wednesday. We would appreciate any and all suggestions on that from you brave warriors.

Thanks for this site, it is a God send.

lindaprocopio

Mannhill said:

My mom too
My mother (late 70s) was also recently diagnosed with UPSC following a radical hysterectomy. Cells found in lymph nodes removed at the same time. We are waiting for the results of the surgeon's conference with colleagues this coming Wednesday, but the surgeon has said she thinks they will recommend 6 chemo treatments (3 weeks in between). We are feeling a bit in limbo at the moment, and I'd like to be armed with all the questions I should ask the doctors on Wednesday. We would appreciate any and all suggestions on that from you brave warriors.

Thanks for this site, it is a God send.

Because this thread is so LONG, you may want to post a new one.
This super-long thread you posted on loads so slowly because it IS so incredibly long. At one time uterine cancer didn't have it's own Discussion Board, so we used this single thread as our 'place' here. I still always suggest that anyone with a new UPSC diagnosis take the time to read this thread from start to finish as it will give you the best overview of what the journey will be like in the beginning months. Think of it as a book written especially for you and work your way through it over the course of a few nights.

But, ALSO, please start a NEW post to introduce yourself to the regulars here, since many of then have given up waiting for this one SLOW SLOW post to load. You'll find the shorter threads load pretty fast and you won't get as frustrated waiting.

But I love this thread because the large number of responses has gotten it way up there on 'Google' searches on UPSC. And, honestly, this Discussion Board is the best 'real time' information on UPSC that exists on the web.

WELCOME! I am so sorry your mother has to go through this. But we'll help all we can. You're right; she'll need chemo if she has UPSC in her lymph nodes. (((Hugs)))).

ccarrk

Twin sister just diagnosed
Hi Linda,
I am sorry about the diagnosis. Having this rare cancer must feel lonely.
My 61 year old twin sister was just diagnosed with it. We are identical so I do worry
about myself too. Thinking about getting a biopsy.
My sister had just one nodule outside of her uterus on the omentum (tissue in upper abdominal area)
so it's staged 4.
She starts chemo mid Feb. She is healing well from her surgery. I was with her for the past two and a half
weeks.
It's hard since I live 1200 miles from her and I'm the only family member to help her through this. She is single.
She does have many friends where she lives thank goodness.
How are you doing? When did you find you needed the most help during chemo? I want to be there for her
if things get hard. She lives alone.
Anything you can tell me will help. You are in my prayers. CCCK

minniejan

UPSC
I was diagnosed with UPSC on December 13,2010 (after biopsy and ultrasound) having total abdominal hysterectomy, bilateral salpingoophorectomy, omentectomy, and lymph nodes removed during the holiday period, my choice due to the grade of the cancer found upon biopsy. The UPSC has been contained within the uterus, no known involvement outside, thankfully. I will have both chemo, 3 cycles (Taxol and carboplatin) and radiation 3-5 treatments. My chemo should begin on Feb. 8th, and I am seeing the radiologist this week. I consider myself very lucky considering the aggressiveness of this cancer, but I did push and push for quick surgery as soon as I knew my diagnosis. One doctor tried to talk me out of surgery until mid-January, I quickly dropped him and looked elsewhere.
Prior to diagnosis, I was very healthy, normal weight, with only high blood pressure and some arthritis, I am 58 years old. My only symptom was very very slight bleeding upon urination, which I originally thought was coming from bladder, thankfully I quickly realized it was not bladder related. I am 5 year post menopausal but had major problems in my 40s with heavy periods and fibroids. I also had removal of some noncancerous polyps of the uterus in my late 40s.
I too have read about the high incidence of recurrance, even in early stages, especially to the lungs. I am just starting my journey.

debbiejeanne

deanna14 said:

Nice to "meet" you...
I am also glad to find someone who can truly understand what I am going through. I have a wonderful partner and he has been by rock through all of this, but he can only understand to an extent how i feel. I also have wonderful family and friends. I am 39 and otherwise healthy, but have always had menstrual "issues," including endometriosis. The only different symptom was spotting between periods. In retrospect I think I had more symptoms, if I had only known.
Anyway, my CA-125 the day after surgery was only 11. They didn't check it prior to my hysterectomy because from the D&C, I was only Stage I. They they found 1 positive lymph node when they did my hysterectomy. They are also doing genetic testing. My grandmother had colon cancer, mother had endometrial and brother and uncle had colon cancer.
I start radiation tomorrow. I had my "dress rehersal" today, they set my up and did xrays to be sure everything was "set" correctly.So, my first real treatment will be tomorrow. Last week we did the simulation, where they made my molds and placed my tattoos. The tattoos are 3 small black freckles, one on each hip and one on my lower abdomen. I want you to be prepared, because no one told me ahead of time... when they placed the tattoos, I had to insert a vaginal marker. It kinda freaked me out, only because no one warned me ahead of time. I will do 5 days a week for 5 weeks external, then once a week for 3 weeks internal. My external radiation is belly button down. I was to told to expect diarrhea and fatigue. Possibly bladder problems such as urgency, frequency and increased incidence of urinary tract infection. Also, the possibility of burned skin.
When I complete radiation, I will get 5 weeks off prior to starting chemo. I'm not positive, but the initial talk was 3 days of chemo every 3 weeks for 8 cycles. Taxol and 2 other drugs that I don't remember. I am trying to approach one hurdle at a time. The reason I remember the Taxol is because that is the one that makes your hair fall out. I wanted to know that so I could mentally prepare myself. It seems like a stupid thing to worry about, but I just needed to know.
The doctor told me to eat what I wanted when I could. He encourages me at each visit to eat and especially no losing weight. I have occasionally been drinking Ensure supplements since surgery. Today at the cancer center, they gave me samples of different flavors of Ensure. The auxillary at the hospital donates them, so they are given out by the case for free to cancer patients undergoing treatment.
I am certainly glad to have someone to talk to. I will keep in touch and let you know how things are going. Let me know if you have other questions or tips. Take care of you!

Dianna, I'm sorry for your
Dianna, I'm sorry for your dx. It is awful what people go thru with this nasty beast. I am here for my sister in law who has endometrial cancer of uterus and ovaries. I wanted to let you and all know that the American Cancer Soiecty will pay for a wig if you want one. They also offer a make up class and give you lots of make up. The reason for that is if you feel good about the way you look you will feel better all over. I hope this info helps you and others. Hang in there.
God Bless,
debbie

lindaprocopio

minniejan said:

UPSC
I was diagnosed with UPSC on December 13,2010 (after biopsy and ultrasound) having total abdominal hysterectomy, bilateral salpingoophorectomy, omentectomy, and lymph nodes removed during the holiday period, my choice due to the grade of the cancer found upon biopsy. The UPSC has been contained within the uterus, no known involvement outside, thankfully. I will have both chemo, 3 cycles (Taxol and carboplatin) and radiation 3-5 treatments. My chemo should begin on Feb. 8th, and I am seeing the radiologist this week. I consider myself very lucky considering the aggressiveness of this cancer, but I did push and push for quick surgery as soon as I knew my diagnosis. One doctor tried to talk me out of surgery until mid-January, I quickly dropped him and looked elsewhere.
Prior to diagnosis, I was very healthy, normal weight, with only high blood pressure and some arthritis, I am 58 years old. My only symptom was very very slight bleeding upon urination, which I originally thought was coming from bladder, thankfully I quickly realized it was not bladder related. I am 5 year post menopausal but had major problems in my 40s with heavy periods and fibroids. I also had removal of some noncancerous polyps of the uterus in my late 40s.
I too have read about the high incidence of recurrance, even in early stages, especially to the lungs. I am just starting my journey.

Welcome Minniejan! & a big hug!
I hope you've taken the time to read the long long multi-page thread you posted to, as it is like a reassuring book written just for someone starting out on this journey, and is probably the best real-time resource on the web about UPSC.

That being said, you'll want to start a NEW thread or respond to come of the newer threads on this Discussion Board, because this super-long old thread loads so slowly that most of the posters avoid opening it to respond. At one time there was no separate Discussion Board for uterine cancer, and all of us with UPSC all posted under this one thread on the Gynecologic Cancer Board. But now there is a Uterine Cancer Discussion Board where we can discuss specific topics related to our treatments, etc. And the shorter threads load MUCH MUCH faster.

But this particular thread is still the most wonderful, as it chronicals quite a few actual uterine cancer journeys as they unfold and provides a wealth of information for anyone starting out on this path. And the sheer number of posts makes it appear high on a Google Search for information on UPSC, and brings you all to us here. (((Minniejan)))

mgbroome

lindaprocopio said:

Welcome Minniejan! & a big hug!
I hope you've taken the time to read the long long multi-page thread you posted to, as it is like a reassuring book written just for someone starting out on this journey, and is probably the best real-time resource on the web about UPSC.

That being said, you'll want to start a NEW thread or respond to come of the newer threads on this Discussion Board, because this super-long old thread loads so slowly that most of the posters avoid opening it to respond. At one time there was no separate Discussion Board for uterine cancer, and all of us with UPSC all posted under this one thread on the Gynecologic Cancer Board. But now there is a Uterine Cancer Discussion Board where we can discuss specific topics related to our treatments, etc. And the shorter threads load MUCH MUCH faster.

But this particular thread is still the most wonderful, as it chronicals quite a few actual uterine cancer journeys as they unfold and provides a wealth of information for anyone starting out on this path. And the sheer number of posts makes it appear high on a Google Search for information on UPSC, and brings you all to us here. (((Minniejan)))

New to site...mom recently diagnosed...need help!
My mom, age 76, underwent a hysterectomy on 1-6-11. She was diagnosed with stage 4 Serous papillary carinoma. She had 3 tumors, all cancerous, removed. One was not contained...2 spots removed from stomach fatty tissue. Surgeon who did surgery is an gyno-oncologist....Hope Center in Asheville, NC. Long story short, in hospital for 15 days...complications due to sleepy bowels, colitis,etc, etc, etc. Had no symptons until 1 mo prior to surgery...found tumor during 6 month ultrasound of kidneys then started bleeding and experiencing cramping. Anyway, given option of 6 treatments of chemo...taxol & carboplatin followed by radiation. She is also a candidate for participation in research trial...2 arms...1st arm radiation with chemo (cisplatin) followed by 4 treatments of chemo (carboplatin/paclitaxel) or 2nd arm is only chemo (6 treatments...carboplatin/paclitaxel). Just got home (I live in Charlotte and brothers not in area either) from over 3 week stay in Asheville and am overwhelmed with trying to get as much info as quickly as possible to help her make the right decision. She of course is old school...no internet access and completely clueless on how to make good and well-informed decision. Her doctor was on fence about the 2 treatment plans. Says has good chance of "curing" cancer because cancer had not invaded organs, blood, etc if went with treatment plan but if came back would be fatal because of aggressiveness of cancer. Mom goes back 2-14 to meet with Chemo NP with decision. On top of that, my dad got sick at same time with viral infection and was in and out of hospital and is now recuperating in rehab facility plus has been diagnosed with dementia so that has added to stress. HELP!!!!!!! Any and all info is welcome.

mkolar

mgbroome said:

New to site...mom recently diagnosed...need help!
My mom, age 76, underwent a hysterectomy on 1-6-11. She was diagnosed with stage 4 Serous papillary carinoma. She had 3 tumors, all cancerous, removed. One was not contained...2 spots removed from stomach fatty tissue. Surgeon who did surgery is an gyno-oncologist....Hope Center in Asheville, NC. Long story short, in hospital for 15 days...complications due to sleepy bowels, colitis,etc, etc, etc. Had no symptons until 1 mo prior to surgery...found tumor during 6 month ultrasound of kidneys then started bleeding and experiencing cramping. Anyway, given option of 6 treatments of chemo...taxol & carboplatin followed by radiation. She is also a candidate for participation in research trial...2 arms...1st arm radiation with chemo (cisplatin) followed by 4 treatments of chemo (carboplatin/paclitaxel) or 2nd arm is only chemo (6 treatments...carboplatin/paclitaxel). Just got home (I live in Charlotte and brothers not in area either) from over 3 week stay in Asheville and am overwhelmed with trying to get as much info as quickly as possible to help her make the right decision. She of course is old school...no internet access and completely clueless on how to make good and well-informed decision. Her doctor was on fence about the 2 treatment plans. Says has good chance of "curing" cancer because cancer had not invaded organs, blood, etc if went with treatment plan but if came back would be fatal because of aggressiveness of cancer. Mom goes back 2-14 to meet with Chemo NP with decision. On top of that, my dad got sick at same time with viral infection and was in and out of hospital and is now recuperating in rehab facility plus has been diagnosed with dementia so that has added to stress. HELP!!!!!!! Any and all info is welcome.

UPSC - uterine papillary serous that has metastasized
Hello.
Saw your posting as we are seeking help for my wife, who has UPSC - uterine papillary serous that has metastasized. This was diagnosed in May, 2007 when cancer cells detected in regular GYN pap smear, no other symptoms. She sought treatment at Stanford Cancer Center, in Palo Alto, CA. Hysterectomy via laparoscopic surgery and biopsy detects UPSC. No chemo was done at this time and she seemed to recover well until Jan 2010, when CT-assisted biopsy at Stanford, CA confirms mass on vaginal cuff is UPSC. She undergoes 6 treatments of carboplatinum treatment, surgery and then external abdominal radiation therapy followed by brachy therapy. In Jan, 2011 PetScan shows 6 small spots on lungs, two in abdomen, one of which is very near the tumor that was just removed in June (disappointing as this was area with radiation). Doctors recommend Doxil. We received second opinion from doctor at MD Anderson, who stated she might consider a study, however he agreed that Doxil was best option as others stated. A week later, chemo started in Austin, TX, with a severe pain occuring where tumor is pushing against colon. Not able to handle narcotics, she has been taking high dosages of Advil every 4 hours to handle the pain. We had hoped Doxil would start help with relief on tumor pain, but 2 weeks after treatment, not happening. Doc tells us too soon to expect this.

We are not convinced that the continued regime of chemo here in the US is the ultimate answer, so we are considering traveling to Mexico and we are requesting the feedback from anyone who has any knowledge of care at the Angeles Function Oncology Hospital in Tijuana, Mexico as well as the Cancer for Hope clinic in Baja, Mexico. We have discussed with the head doctors of these hospitals/clinics but am cautions that this is right decision. Also, we are considering Klinik St. George Hospital and the Hufeland Clinic For Holistic Immunotherapy in Germany. The Mary Crowley Research Center also has been recommended.

I have searched this forum and cannot find any reference to any of these clinics/hospitals. Please, if anyone has first hand knowledge of these clinics or knows of someone who has, we would truly appreciate your response. We are so glad to have found this forum, as information is so hard to come by as we will be glad to share our experience if this will be helpful to others.

Mark K in Austin, Texas
mkolar@austin.rr.com

Momismyhero

My Mother
My mother was diagnosed with papillary serous carcinoma, stage 4c. I have read so many postings that begin with that sentence that it tears out a tiny piece of my heart each time I read a new one.
My 69 year old mother is coming home from the hospital tomorrow, after having a radical hysterectomy appendectomy, and removal of a tumor from the omentum. Her gyn/oncologist has said that its spreading, and that chemo will give her maybe a few more months. She will not agree to chemotherapy to gain just a few months more that will be spent ill, and in bed.
She has decided to use naturalpathy, homeopathy, and essiak tea.
Have any of you ladies treated yourselves with these things instead of chemo? If so, how have they worked for you? Are there other things to try?
I want to help her in any way I can. She is determined in her decision, and I support her wishes fully, even though its hard to imagine life without her. I know her strength and faith will see her thru this. I appreciate any advice you have to offer.
Thanks,
Cari

upsofloating

Momismyhero said:

My Mother
My mother was diagnosed with papillary serous carcinoma, stage 4c. I have read so many postings that begin with that sentence that it tears out a tiny piece of my heart each time I read a new one.
My 69 year old mother is coming home from the hospital tomorrow, after having a radical hysterectomy appendectomy, and removal of a tumor from the omentum. Her gyn/oncologist has said that its spreading, and that chemo will give her maybe a few more months. She will not agree to chemotherapy to gain just a few months more that will be spent ill, and in bed.
She has decided to use naturalpathy, homeopathy, and essiak tea.
Have any of you ladies treated yourselves with these things instead of chemo? If so, how have they worked for you? Are there other things to try?
I want to help her in any way I can. She is determined in her decision, and I support her wishes fully, even though its hard to imagine life without her. I know her strength and faith will see her thru this. I appreciate any advice you have to offer.
Thanks,
Cari

A second opinion is in order
A second opinion is in order when given such a prognosis. The chemo can stop the spread and resolve any notable remaining tumors. Has the cancer invaded any critical organs impairing their function? If not, she may get a lot more than a few months. Starting chemo as soon as possible post-op is essential as this can be a time when remaining cells proliferate. These days chemo is much easier to tolerate and there are many drugs that can alleviate side effects. If chemo would do so littlefor her I am unsure why they did the extensive surgery from which she must now recover. Again, I would recommend a second opinion.

I am sorry you and she must deal with this but there are treatments that are successful. This cancer has only had improved trreatment since a 2005 study showed it best treated like ovarian cancer and this has made all the difference. I was staged 4b 3 yrs. Ago and am currently in remission.

This site is frequented by many women who have been there and can provide support and advice- just ask
Annie

Honordon

upsofloating said:

A second opinion is in order
A second opinion is in order when given such a prognosis. The chemo can stop the spread and resolve any notable remaining tumors. Has the cancer invaded any critical organs impairing their function? If not, she may get a lot more than a few months. Starting chemo as soon as possible post-op is essential as this can be a time when remaining cells proliferate. These days chemo is much easier to tolerate and there are many drugs that can alleviate side effects. If chemo would do so littlefor her I am unsure why they did the extensive surgery from which she must now recover. Again, I would recommend a second opinion.

I am sorry you and she must deal with this but there are treatments that are successful. This cancer has only had improved trreatment since a 2005 study showed it best treated like ovarian cancer and this has made all the difference. I was staged 4b 3 yrs. Ago and am currently in remission.

This site is frequented by many women who have been there and can provide support and advice- just ask
Annie

New here am in 5th week of radiotherapy and Chemo
am not sure how to post so am just going for it am 47 years old and was Diagnoised on 1st April. I have Papilary serous carsnoma ( spelt badly ) in my cervix/womb my two lymphnodes in my pelvis and my kidney stem. I was rushed into hospital when I hemoraged during my papsmear test. I have had radiotherapy everyday for last 4weeks and chemo called cystiplan once a week for these weeks. 5 treatments of chemo and radiotherapy everyday.

Am told it may be in my lung and this is realy why I posted when I was first admited to hospital I had a few infections in my body I beleive that I had the left over of a bad flu from last year my first scanns showed that the cancer was maybe a shadow in my lung ( or a left over infection) ct and mri then after six days in hospital and getting my anemia fixed with blood transfusions I was sent home and come back for a PET scann. This PET scann showed not in my lung. But now my treatment seems to be hanging on a CT scann for next wednesday and if it is in my lung they say I will not be given the internal Brachy and my treatment will stop at what they have allready done.
Am realy scared I so wish it not to be in my lung . Also they told me that they do not remove this type of tumor though I read that alot of you have had Hysterectemy's I have not been given that option at all and I wonder why.

waiting for some answers I feel totally lost and just sick about the scann next week I so wish it to be clear and that my lungs are clear

thankyou for listening Donna:)

upsofloating

Honordon said:

New here am in 5th week of radiotherapy and Chemo
am not sure how to post so am just going for it am 47 years old and was Diagnoised on 1st April. I have Papilary serous carsnoma ( spelt badly ) in my cervix/womb my two lymphnodes in my pelvis and my kidney stem. I was rushed into hospital when I hemoraged during my papsmear test. I have had radiotherapy everyday for last 4weeks and chemo called cystiplan once a week for these weeks. 5 treatments of chemo and radiotherapy everyday.

Am told it may be in my lung and this is realy why I posted when I was first admited to hospital I had a few infections in my body I beleive that I had the left over of a bad flu from last year my first scanns showed that the cancer was maybe a shadow in my lung ( or a left over infection) ct and mri then after six days in hospital and getting my anemia fixed with blood transfusions I was sent home and come back for a PET scann. This PET scann showed not in my lung. But now my treatment seems to be hanging on a CT scann for next wednesday and if it is in my lung they say I will not be given the internal Brachy and my treatment will stop at what they have allready done.
Am realy scared I so wish it not to be in my lung . Also they told me that they do not remove this type of tumor though I read that alot of you have had Hysterectemy's I have not been given that option at all and I wonder why.

waiting for some answers I feel totally lost and just sick about the scann next week I so wish it to be clear and that my lungs are clear

thankyou for listening Donna:)

Welcome Donna to the group
Welcome Donna to the group no one wants to need. And I am so sorry you need tobe here.
Are you being treated by a gynecologic oncologist? In these cases it is essential to have their expertise in both treatment management and the higher level of surgical skill required. Although I am familiar with chemo before any surgical intervention, I have not been aware of going directly to radiation. Is the radiation targeted to a specific area? If the cancer has indeed spread out of pelvic area local pelvic radiation is not ususally done unless it is targeted for palliative not curative treatment.
If there is concern of cancer spread to lung area, PET/CT is best test as CT shows physical abnormalities but the PET shows whether or not there is increased metabolic activity indicating possible cancer as opposed to damage or scar tissue that is not active.
Can you request a second opinion? It is important that you get all questions and concerns answered. As far as surger or not - if the cancer appears initially to be in places that may be dangerous to access such as attached to critical blood vessels it may be postponed in hopes of deceasing cancer prior to surgery. This can also decrease potential for postop complications. I would get clarification as to why the dr does not plan to do debulking surgery.
Also, hou may want to start a new discussion as you have questions, concerns, etc. So that it will be easier for others to respond to. We like to keep this thread as a starting point to keep an ongoing thread of those with upsc and so newcomers like yourself can read thru to for an intro to others here.
We are here to support each other.
Annie

Honordon

upsofloating said:

Welcome Donna to the group
Welcome Donna to the group no one wants to need. And I am so sorry you need tobe here.
Are you being treated by a gynecologic oncologist? In these cases it is essential to have their expertise in both treatment management and the higher level of surgical skill required. Although I am familiar with chemo before any surgical intervention, I have not been aware of going directly to radiation. Is the radiation targeted to a specific area? If the cancer has indeed spread out of pelvic area local pelvic radiation is not ususally done unless it is targeted for palliative not curative treatment.
If there is concern of cancer spread to lung area, PET/CT is best test as CT shows physical abnormalities but the PET shows whether or not there is increased metabolic activity indicating possible cancer as opposed to damage or scar tissue that is not active.
Can you request a second opinion? It is important that you get all questions and concerns answered. As far as surger or not - if the cancer appears initially to be in places that may be dangerous to access such as attached to critical blood vessels it may be postponed in hopes of deceasing cancer prior to surgery. This can also decrease potential for postop complications. I would get clarification as to why the dr does not plan to do debulking surgery.
Also, hou may want to start a new discussion as you have questions, concerns, etc. So that it will be easier for others to respond to. We like to keep this thread as a starting point to keep an ongoing thread of those with upsc and so newcomers like yourself can read thru to for an intro to others here.
We are here to support each other.
Annie

Thankyou so much for your reply
and yes I started a new thread on the cervical cancer lines .
Am so new at this and I do havea ono/gen and a radio doc and chemo doc all three a good team who reveiw me once a week and I see them all mostly weekly as individuals.
Am an Aussie the hospital is Adelaide royal and seems a very good place am not sure about second opinion but if I have to I will go to Melbourne for that its my LIFE am so not ready to give up not one bit.

The Radiation is targeted at the lymph nodes in pelvis also the kidney stem only small tumour there ( have had no trouble with kidney at all ) and the cancer in womb/cervix which is 8.5 cm in cervix and 2.5cm on each lymph nodes. From what they tell me they wish to shrink kill them or make them disapear with the radio/chemo and push me into remission they say this way of treating this type of tumor has been very successful.I realy think there is none on my lungs am so scared for next wednesdays scann but am trying to stay positive.

At the moment due to extreme gastro I am on a white diet which I hate white bread pasta rice etc and meat no veg no fruit BUT as soon as I am off the radio/chemo and gastro is gone I am back on vegetarian lifestyle and organic I realy beleive that it will help cure me and its something postive I can do for my whole body

thankyou again Donns

judyhrn

New to this group and diagnosis
Hi all, my name is Judy and I am new to this group.

I was just diagnosed with high grade adenocarcinoma, papillary serous carcinoma on June 3, 2011. Of course, as each of you, the worse thing to have to hear. I had a D/C on May 31 and my doctor called me in to give me the news a few days later. I had surgery on June 25, with hysterectomy, tubes, ovaries, and some lymph nodes. Not sure why, but this doctor (GYN, Oncologist) opted not to take out the omentum. I have been reading that they usually do. I am going in to the oncologist tomorrow, Tuesday July 5, to find out the staging and treatment plan. Very worried and nervous about the whole thing.

I am 58 years old and went in to my GYN after having some post menopausal bleeding. And on from there. No other symptoms. My GYN was very surprised when the D/C path report showed that it was cancer, and this aggressive type.

I am so sorry that each of you have the need to be here, but very thankful that there are others who can understand.

daisy366

judyhrn said:

New to this group and diagnosis
Hi all, my name is Judy and I am new to this group.

I was just diagnosed with high grade adenocarcinoma, papillary serous carcinoma on June 3, 2011. Of course, as each of you, the worse thing to have to hear. I had a D/C on May 31 and my doctor called me in to give me the news a few days later. I had surgery on June 25, with hysterectomy, tubes, ovaries, and some lymph nodes. Not sure why, but this doctor (GYN, Oncologist) opted not to take out the omentum. I have been reading that they usually do. I am going in to the oncologist tomorrow, Tuesday July 5, to find out the staging and treatment plan. Very worried and nervous about the whole thing.

I am 58 years old and went in to my GYN after having some post menopausal bleeding. And on from there. No other symptoms. My GYN was very surprised when the D/C path report showed that it was cancer, and this aggressive type.

I am so sorry that each of you have the need to be here, but very thankful that there are others who can understand.

Judy
Hang in there. I'm a UPSC sister too - but almost 3 years down the road from you. I was 61 when diagnosed and very healthy and fit. Many of us had no symptoms at all!!! I agree that it's a shocking diagnosis - any cancer is. My doc had no explanation for WHY - just bad luck. Who really knows. I had no risk factors for this.

My suggestion is for you to keep written records, ask lots of questions, have someone accompany you to appointments, get a tissue assay (hopefully already underway - it will help ID best chemo treatment for you), and a second opionion if you want. Your likely course of treatment will be the standard 6 rounds of carboplatin and taxol. But others here have had some variations of this.

Try to stay calm and take each day in stride - but it's certainly OK to cry and get mad. I'd recommend you develop a can-do attitude and desire to live and love with joy. You and I have lots of life to live yet!!!! We are here for you day and night!!!!!

Your friend and partner in this journey, Mary Ann

hope_floats

lindaprocopio said:

Starting CHEMO on Monday!
I'll let Peggy or Marge respond on the Astroglide, as I am like you, "restricted" and sex is fast becoming a distant memory! HA!
I had my first consultation with my chemo oncologist today, and my chemo is starting MONDAY. The initial plan is 6 cycles of the carboplatinum/paciltaxill (sp???) we all get, once every 3 weeks. And I just got back from having my baseline CT-scan. So my stomach in gurgling from all of the contrast liquid I had. The nurse at the chemo place said everyine is different, but that I might start losing my hair as easly as 14 days, so my family may be coming for Thanksgiving to a BALD hostess! (the least of my worries, believe me!)

Information Request
Hi Linda,

I've read your many posts and wanted to introduce myself in hopes that you might be able to help with answers to the many questions I have.

My sister has recently been diagnosed with UPSC and had a full hysterectomy done, and peritoneal tissue removed from the abdominal lining.

They removed 24 lymph nodes and everything tested negative, and this is wonderful news, however it is still this rare form of cancer and I have a lot of questions.

We are going to meet with her oncologist this week to discuss her chemotherapy treatments. I am a little confused as to why they still have to proceed with chemo. I know it's more than likely a preventive measure, but would just like to hear some of your stories or reasons why this may be the case.

She is a colon cancer survivor and was almost to her 5th year as a survivor when they discovered this cancer through a Pap smear as well.

Any insight would be greatly appreciated.

hope_floats

hope_floats

Rona Badger said:

Me Too - Hello Dear Ones
I'd like to tell you my story in hopes it will answer some questions for others:

On October 7, 2009, my doctor told me the biopsy report showed I had uterine papillary serous adenocarcinoma (UPSC).

I soon found out that this is an uncommon form of endometrial cancer that typically arises in postmenopausal women. I was already three years into menopause. Also, my oldest sister died of cancer when she was forty-five years old. Having a one-degree relative with cancer was another piece in explaining my health puzzle.

I always lived a very healthy life and lifestyle. My only medical problem was migraine headaches and I had a history of those going back to my early twenties.

Here is how my cancer was discovered: In early September 2009, I started bleeding coupled with abdominal and lower back pain. This is what led me to see a doctor. Up until then, I was feeling fine. Just the usual aches and pains of getting a bit older. I was looking forward to my birthday in October, when I would turn 52.

I did have a strong inkling that change was coming. Toward the end of the summer, I told a close friend that right around my birthday, I felt something big was going to happen. I didn't know what it was going to be, except that it was going to be major, and positive, and something that would change everything about the way I was going about my life. I thought this must have something to do with my career or someone I would meet and work with. We discussed this several times, as we usually talk on the phone once or twice a week. "Do you have any idea what it is?" she would ask. "No. I just know around my birthday, things will be different," I kept telling her.

Once my doctor gave me the news, I began a very fast track for treatment. My phone was ringing non-stop. There were many tests and appointments. Surgery was scheduled for October 20, when I underwent a bilateral salpingo-oophorectomy. I stayed for two nights in the hospital. The surgery went very well, and was able to be done laparoscopically, so the healing time was shorter than a full abdominal incision. I have four "holes" that are now hardly visible.

After surgery, I just lounged around in bed. On October 29, it was time for my post-op appointment and to get my pathology report.

This part is where it gets scary. The cancer spread to the lymph nodes, meaning I had Stage 3C cancer. We knew this was an aggressive type so it was not totally unexpected but we were hoping it would have been confined to the uterus. The surgery was the beginning and now I had a ways more to go.

Next was targeted radiation treatments at the site of surgery, and I had three of those in the next month. I would also have six rounds of chemotherapy. These were 5-hour IV-drip sessions, but spaced three weeks apart. My first treatment was on November 12 and I have now just finished in early March 2010.

After the first chemo, my hair started to fall out. I had my head shaved. By the fourth chemo, I lost my eyebrows and most of my eyelashes. I have skimmed this message board and laughed at the person who said they looked like a turtle without their shell! That is me. The steroids combined with the chemo gave me a very round face.

In the next few weeks, I will have an MRI and blood work. Then I will see my doctors on March 24 when they WILL pronounce me officially IN REMISSION. That is my humble prayer.

Through everything I have been blessed by the love of many people. I used Caring Bridge as a daily diary where I could write about my fears and hopes. I want all of you experiencing this to know that you can make it! Laughter is the very best medicine and the more you smile, the faster you will look and feel like your old self again! Emphasis for me on the old ;-).

Much love and many blessings, dear UPSC sisters! Rona

Thank you!
Dear Rona,

I have a sister that was recently diagnosed with UPSC. I am so confused and scared. I don't want my sister to feel this or sense this, simply because the rest of us need to keep her uplifted.

This is not the first time she has had cancer. She is a colon cancer of almost 5yrs, when this hit out of no where.

She went for a routine Pap smear and this is when they gave her this diagnosis. It hasn't been quite 5 weeks, but she had a full hysterectomy done and they removed lymph nodes and tissue from her peritoneal wall.

Me and another sister of mine have been surfing the web for more information on this type of cancer, but in all honesty I don't even understand half the information they give you in "medical terms"

I told my sister I found you all, and told her I was going to register in hopes that we might find some answers to better help our sister that is going through this. It is very hard, because she went through so much with her first cancer, that it scares all of us.

We are meeting with her Oncologist this week. The gyn/oncologist who did her surgery does not live in the same city we do, but he told us that after the hysterectomy, it seemed to be confined to the uterus alone. The results came back and out of all the lymph nodes they tested and the tissue from her abdomen, they were all negative, which is great news.

What we don't understand is why is she having to undergo chemo. Is this normal?

Your story has given me hope and came at a crucial time for me, because I want to be strong for my sister.

Thank you!

hope_floats

hope_floats

Always Hopeful said:

Newly diagnosed
Is there a more current UPSC board? I'm new to all of this and keep getting bogged down in the searching.

Due to spotting on Feb. 28, 2010, I had an endometrial biopsy on March 1 and was diagnosed with cancer on March 4th. I, too, have the rare and aggressive form of uterine cancer... uterine papillary serous carcinoma. The pathology reports started off wonderfully...no other gyn organs were involved NOR were my lymph nodes affected. Great news! Here comes the however...two "dots" were found ON my colon during the surgery...they were uterine cells. My gyn-oncologist refers to these cells as "goofy" cells that do not follow any of the uterine cancer cell rules. So, they are treated aggressively and as if they were ovarian cancer. I have followed my medical oncologist recommendation of an 18 week, 6 cycle regimin of carboplatin (every 3weeks) and taxol (every week). After this I will also require internal radiation. I started chemo 2 weeks on (4/28) and luckily have experienced few side effects. Tomorrow is Week 3 of Cycle 1...Taxol.

I would appreciate being directed to the most current board, if this is not it, since I have already gathered so much information from all of the postings I've more haphazardly located. Thanks.

JJ

Current UPSC Board
Hi JJ,

Did anyone every respond to your asking about a current UPSC board? I was just curious. I've left a couple of post as a reply to two other members, and I don't see that they are writing back.

I would just really like to know. I had a sister diagnosed not even a month ago, and has already gone through her surgery, but had answers and am very worried.

Please let me know.

Thank you,

hope_floats

Lois B.

USPC Survivor
Good Evening Linda,

Was just googling around and found this website. You are only the third person that I know that has had USPC. I was diagnosed with this in July 2008, underwent total hysterectomy, six rounds of chemo and five (I think) rounds of internal radiation. I live in Florida and was limited in my choice of Gyn/Oncologists. Well, after all the treatments - the doctor ordered a PET Scan and CA125 - the PET showed something going on in my lung and the CA125 was elevated. Then he called me to say I needed to come in to see him to discuss the options. I was not a happy camper but you have to do what you have to do. I saw him and he said now I'm treatable but not curable. So, I went for a second opinion - this doctor said to wait a while and repeat the tests. My daughter in-law who lives in Texas and is an RN said why don't you go to MD Anderson in Houston. So, I figured perhaps I could qualify for a trial and help someone down the road. My husband and I went to MD Anderson - and it was at that time I had another PET scan and blood work. Instead of waiting around the hospital for the results I told the doctor she could call me at my son's home in Texas and give me the results. Well, to make a long story short - she calls me on Friday - here I am with my granddaughter and husband at the community pool. The doctor told me she doesn't often have good news but after the studies and discussion with the specialists, I didn't have a recurrence and did not need further treatment. She said she'd see me in three months. Now it is September 2011 and I'll follow-up in six months' time. I'm so grateful to have found a group like this one.
To give and receive encouragement is a blessing. Hope to hear from you.
Lois

lindaprocopio

Lois B. said:

USPC Survivor
Good Evening Linda,

Was just googling around and found this website. You are only the third person that I know that has had USPC. I was diagnosed with this in July 2008, underwent total hysterectomy, six rounds of chemo and five (I think) rounds of internal radiation. I live in Florida and was limited in my choice of Gyn/Oncologists. Well, after all the treatments - the doctor ordered a PET Scan and CA125 - the PET showed something going on in my lung and the CA125 was elevated. Then he called me to say I needed to come in to see him to discuss the options. I was not a happy camper but you have to do what you have to do. I saw him and he said now I'm treatable but not curable. So, I went for a second opinion - this doctor said to wait a while and repeat the tests. My daughter in-law who lives in Texas and is an RN said why don't you go to MD Anderson in Houston. So, I figured perhaps I could qualify for a trial and help someone down the road. My husband and I went to MD Anderson - and it was at that time I had another PET scan and blood work. Instead of waiting around the hospital for the results I told the doctor she could call me at my son's home in Texas and give me the results. Well, to make a long story short - she calls me on Friday - here I am with my granddaughter and husband at the community pool. The doctor told me she doesn't often have good news but after the studies and discussion with the specialists, I didn't have a recurrence and did not need further treatment. She said she'd see me in three months. Now it is September 2011 and I'll follow-up in six months' time. I'm so grateful to have found a group like this one.
To give and receive encouragement is a blessing. Hope to hear from you.
Lois

Hi, Lois, and welcome to the group!
Welcome welcome! Yours is an encouraging story; 3 1/2 years with no recurrances! WONDERFUL!

This long long thread probably brings more women to us than anything else, as it has always shown up on a Google search on UPSC on the 1st page. When you have time, you may enjoy reading the whole thread, as it is like a book written especially for only us, full of 'real time' experiences. Before we had our ouw "Uterine Cancer" Discussion Board, we all posted on this same thread under the "Gynecologic Cancers" Discussion Board of Cancer Survivor Network (CSN). But since then CSN has given us our own Uterine Cancer Discussion Board, and now you can post on specific topics, etc. Because this particular thread is so LONG, it loads so slowly that you may not get many responses. I suggest that you scroll up this page, and look at the column on your left, clicking on 'Discussion Boards'. Once you click on Discussion Boards, scroll down to the Uterine Cancer discussion board and click on that. Then please post a new discussion there, so that everyone can 'meet' you. ((((Lois))))