CSN Login
Members Online: 6

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

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was diagnosed with UPSC, and had a total hysterectomy and 25 lymph nodes removed for staging 2 weeks ago. The cancer had penetrated into the 2nd half of the uterine wall and into 1 fallopian tube, but my cervix and ovaries (all cut out now) were clear. One of the 25 nodes removed showed microscopic traces of the cancer, jumping my diagnosis to Stage 3-C. So now I have another 2 weeks to heal from my surgery before radiation and chemo begin. I had absolutely NO symptoms; this was originally caught during a routine annual PAP test this July, (which apparently never happens). UPSC is very resistant to treatment with a high incidence of recurrance. I guess I was hoping to find someone else here with the same cancer type that would tell me that the upcoming long months and months of aggressive radiation/chemo will allow me to greet the spring cancer-free. I can't find anyone who has this rare cancer.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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
Posts: 3
Joined: Jan 2011

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
Posts: 1
Joined: Feb 2011

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
Posts: 1
Joined: Mar 2011

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's picture
upsofloating
Posts: 473
Joined: Dec 2009

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's picture
Honordon
Posts: 49
Joined: Jun 2011

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's picture
upsofloating
Posts: 473
Joined: Dec 2009

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's picture
Honordon
Posts: 49
Joined: Jun 2011

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

Randumgrly
Posts: 3
Joined: Mar 2013

Cari, my mother too has stage 4. We just returned home from her surgery. I am so saddened bc the doctors are beating around the bush with her about her prognosis, and it is breaking my heart. I had to ask the aweful questions bc they wouldn't flat out tell me. I would like to know is your mom still with you now?

judyhrn's picture
judyhrn
Posts: 1
Joined: Jul 2011

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

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

Lois B.
Posts: 10
Joined: Sep 2011

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's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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))))

Lois B.
Posts: 10
Joined: Sep 2011

It's so good to know that there are so many of us survivors of this cancer. Everyday that we live and breathe we are survivors. Since the topic is on uterine cancer - I will tell you all that I am not only a uterine cancer survivor but a breast cancer survivor since l993 with no recurrence.

My stage for the uterine cancer is, I believe, a 1B, which I'm told with treatment is about 70-80% of no recurrence.

Where do you follow-up or are you on maintenance therapy?

I'll have to do as you suggest and look back over the previous posts.

deanna14
Posts: 734
Joined: Oct 2008

I was flipping back through this l oooooooo n g thread that started our journey those many scary months ago. Someone really should write a book or make a movie using all this insight we have recorded here.
I simply wish that all the stories had happy endings. I was so lost and scared... we all were and we held hands have faced this monster together. Know that I am still holding your hand and you hold a piece of my heart. You are so courageous and are facing this new chapter with such grace! Thank you for always lifting us up and encouraging the warriors. Comfort is the key in the new chapter. I know you will make the most of every moment. Enjoy... (((Linda))) Thank you for being my friend! Stay comfortable... I will be checking in on you every day.

PS... I don't like this part of the book!!

germanlady
Posts: 20
Joined: Nov 2011

so inspiring to read your story. Gives us all hope. Blessings to you

debrajo's picture
debrajo
Posts: 776
Joined: Sep 2011

I am new here so I don't know the edicate of this board. I was diagnosed July 2009, but didn't get the surgery til 12-3-09 due to open heart surgery to replace an aortic valve that was 95% calsfied due to a birth defect. After a bovine valve I "suddenly got e-coli in my blood stream. They finialy did a radical hysterectmy in Dec. I can not get a straight answer from anyone! I was staged at 1a, had fivr rounds of vaginal radiatioo=n, and six rounds of Taxol/Carboplatin. I finished all treatments since May of 10, so I am 17 months in remission. The ca125 is on average 12-14, never over 17. Everyone at the hospital walks around me like walking on egg shells! And I am tired of it! The best answer I get about survivial time is "Every one is different. I may start screaming! Can any one talk to me about odds or expections? Thanks, Debrajo

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Debrajo, you can relax. With Stage 1a, if you did the surgery and adjuvant chemo and brachytherapy, your chances of never recurring are close to 100%! Yes, it could happen; UPSC is a very sneaky and aggressive cancer. But the likihood of you recurring when caught so early and with all the adjuvant treatment you did is so very very very small. Allow yourself to believe that you have beaten this and try to stop worrying.

If I were lucky enough to be in your situation, I would slam the door on cancer in my mind and get on with my happy healthy life, and not give cancer another thought until it was time for my next checkup. Congratulations on your 17 month remission, and on the decades of remission that, statistically, are still to come for you! (((hugs)))

debrajo's picture
debrajo
Posts: 776
Joined: Sep 2011

Thanks SOOOOOO much for all the positive feed-back on my rant! I feel so much better and can't imagin WHY the medical pro's can't give us straight answers and just a little hope! Don't they know we are grasping at straws about all the uncharted territory? I do feel some "surviver guilt" when so many of you have been through so much more than I have. I took one round of radiation a week for three weeks and three rounds in one week and had not one problem. The last three rounds were given during my first course of chemo. Again, almost no problems outside of muscle and joint pain from the waist down three days after chemo that only lasted 1-3 days. No nausia , no stomach distress, just gained 30 pounds I CANNOT get off. So many of you went through so much and then to have it come back! God bless all of you! Please keep me posted. I don't go back to M.D. Anderson til January...I am up to the once every 4 months level.

I was told that UPSC occures, around the world, one in one million and since it is rare, almost an "orphan disease" there are no real trial studies or medicines going on. Is this true? Thanks again so much and I do think your ositive outlook will help to heal you completely! Debrajo

Loneville
Posts: 1
Joined: Oct 2011

I found this website tonight. I entered "Is ANYONE doing research on UPSC?" into GOOGLE and I found you all!!!!
Things are very different here in the UK. For one thing, money for treatment is not the problem thanks to the jolly old NHS. BUT, UPSC is so rare, that no one is doing research into advanced disease here.
I was diagnosed exactly a year ago and surgery confirmed Stage IIIC disease. After surgery, I was treated with 6 weeks pelvic and abdominal radiotherapy only. That finished in January this year 2011.
I am a Medic, now retired at 56 because of the cancer, so I was not surprised when the lousy prognosis was confirmed!
The plan for me is that when the cancer recurs, I will be treated with carboplatin alone.
BUT and BUT: part of me feels that this is not quite right.......
I am disease free 9 months after radio, my markers are down and, having been a keen endurance runner before I was ill, decided to bite the bullet and try something new. I did my first sprint Tri in July, swam a 1km open water challenge in August and took part in a 45 mile bike ride from Richmond to Windsor Castle. My current challenge is to swim the equivalent of the English Channel (22 miles), for a spinal injuries charity, in my local pool between now and December 4. I still run up to 15 miles a week.
My only problems are lymphoedema of the trunk (such a bore, no more skinny jeans for me), and bowel side effects from the radiotherapy.
Based on what you do in the States, I just wonder whether I should insist on agressive chemo now, before the cancer returns?

JoAnnDK
Posts: 276
Joined: Jun 2011

Glad to meet you here but sorry you had to find us.

Is your treatment the "standard" in the UK?

How are you monitored besides CA 125?

Did you have a lot of lymph nodes removed? How many were "dirty"?

My problem with a doctor saying "when the cancer recurs" is why not do everything one can do to prevent recurrence, especially at stage IIIc ?

JOANN

HellieC
Posts: 444
Joined: Nov 2010

Sorry that you had to join this group! I am also from the UK and I found this group a while back when Googling for research. I don't have UPSC but I have had two recurrences of endometrial adenocarcinoma (currently NED after latest surgery and chemo). The first recurrence was treated with external radiotherapy (best part of 60 Gy in total) and the second with surgery (Hartmann's) and chemo.
I am sure that the "UPSC" ladies here will have lots of advice on the "standard" treatment protocol in the US. It may also be worth taking a look at the ovarian board here, as I understand that UPSC behaves like ovarian in some ways. The first line chemo seems to be taxol and carboplatin in a lot of cases (that's what I had, too) but others have had carbo only.
Kindest wishes
Helen

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi. I am a upsc sister - originally stage 3a 3 years ago. My initial treatment following surgery was the typical 6 rounds of carboplatin and taxol (I has a functional profile of biopsied tissue which confirmed that these were best chemos for me). I did NOT get adjuvent radiation as many/most others seem to get - my doctor did not recommend radiation for me. However I had recurrence in supraclavicular lymph nodes 15 months after completion of chemo. I then had carboplatin and radiation for that. I've been almost a year NED.

I learned something from you. When I checked the NCCN guidelines which my doctor uses, I did not realize that radiation alone is an option listed there. I'm just curious what made your doctor choose this rather than chemo - let us know if you ask him.

If I were you, I would discuss all this with my doctor. I also would change my thinking and don't "assume or expect" it will recur. That only puts a subconscious message in your brain and body.

Even though you did not ask this, I will throw in my 2 cents about exercise. I have read that MODERATE exercise helps our immune system and discourages cancer. However vigorous exercise stresses the body which in turn lowers the immune system. Hence, I would encourage you to not overstress your body while training for your race. I applaud your exercise and will be cheering for you from the States!!!

All the best. Mary Ann

germanlady
Posts: 20
Joined: Nov 2011

Hello everyone, I was diagnosed Wednesday. I feel worse again today. I think I got this dreaded disease because of taking too many medications. For over 25 years, I have been taking lots of different meds for migraines. Have had gastroinestinal problems from the meds also. Nice to find this group. Blessings on all of you, Edith

germanlady
Posts: 20
Joined: Nov 2011

Hello everyone, I was diagnosed Wednesday. I feel worse again today. I think I got this dreaded disease because of taking too many medications. For over 25 years, I have been taking lots of different meds for migraines. Have had gastroinestinal problems from the meds also. Nice to find this group. Blessings on all of you, Edith

germanlady
Posts: 20
Joined: Nov 2011

Hello everyone, I was diagnosed Wednesday. I feel worse again today. I think I got this dreaded disease because of taking too many medications. For over 25 years, I have been taking lots of different meds for migraines. Have had gastroinestinal problems from the meds also. Nice to find this group. Blessings on all of you, Edith

germanlady
Posts: 20
Joined: Nov 2011

Have my first consult with the gyn/onco This Tuesday at 9:00 a.m. Thanks for listening. I am enjoying everyones posts. Edith

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Welcome, Edith, but sorry you have a need to be here. I was diagnosed with UPSC 4 years ago, and was Stage IVB at staging/debulking surgery. You will know much more about what to expect after your gyn onc consult. Also, you will not know of any needed follow up treatment until after surgery and all pathology reports are in. Do not stress yourself with what may or may not have caused this as many healthy, active women with no prior health issues also get this disease. However you may find it helpful to read about what can affect cancer. - a book I recommend is Anti-Cancer A New Way of Life. This site will provide a great deal of information and the sharing of experiences as well as much support. Please ask any questions and use this to share your concerns, problems, experiences. We all learn so much from each other.
Annie

sleem
Posts: 92
Joined: Feb 2010

C:\UPSC\Compass Early Uterine Papillary Serous Carcinoma.mht

This link has been posted over time. Check it out. It has good history of the disease. Each of us has different backgrounds, ideas, & ways of handling UPSC. This article tells about what my journey was at MDA with 'sandwich' method. My ob/onco told me she was hitting my USPC with all that was available with both barrels. I was 1A grade 3 confined to one polyp in uterus. I'm 3 1/2 years out. I had chemo & radiation [vaginal), nodes removed even up to aorta, fat tissue from abdomen & all female parts gone. For me, this is what I selected. Everyone has their means to fight their USPC.

I limit some things in my diet, do exercise in moderation. Spoke with a nutritionist at my hospital.

This is a good place to receive support. It has helped me a lot from our fellow sisters.
Wish that you didn't have to be here too; but it is a great help.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Hi all - I'm a 45 year old pre-menopausal gal with 25 years of birth control pills in my system, so imagine my doctor's surprise when my laparoscopic hysterectomy for a fibroid turned up a grade 3 UPSC.

The hysterectomy was on 10/17/11, the path reports came in on 10/20/11 which kind of put a gray cloud over what I was thinking was a really fast recovery.

On 11/7/11 I had surgery #2 where I had a vertical incision made to take out the brachy, cervix, tubes, ovaries, nodes and omentum. Good news is that the paths came out all clear, bad news is that my uterus was morcellated during the laparoscopic hysterectomy so it looks like I'm in for chemo and/or radiation.

I go in 11/22 for staple removal (anyone got insights on what that's like?) and on 11/23 I got back in to map out a chemo schedule. Happy Thanksgiving, lol!

This thread has been helpful in managing my expectations about chemo and radiation and it's nice to have other ladies who I can relate to :)

Liz

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Welcome to the sisterhood!! Re: the staple removal - very uneventful, nothing to fret about.

I think your story speaks to the value of having a full abdominal hysterectomy from the get-go! I hope you are healing well.

Some suggestions: having a port will save your veins. Get a tissue assay (functional profile) of the cancerous tissue (this will help determine best chemo regime for you). get copies of your records ongoing. ask questions (bring someone with you to appointments can help you with support, someone to help remember and ask questions). stay positive and learn about treatment options including integrative approaches. 2nd opinions are AOK if you would like one.

Keep us posted here. We care. My best to you. Mary Ann

Goldheart
Posts: 36
Joined: Sep 2013

My mom was diagnised with UPSC stage 3c, the tumour extended to uterus and lymph nodes. She has just finished her first cycle of chemo and the tumour has shurnk as well as the lymph nodes. But they still refuse to do the surgery. They recommonded 5 weeks of radiation then decide about the surgery. There is also a 6 weeks wait after the radiation for any inflmmation. I want to know when did you do the surgery? 

 

debrajo's picture
debrajo
Posts: 776
Joined: Sep 2011

Hi Goldheart, Just wanted to let you know that Daisy 366, our dear Mary Ann, passed away some months ago.  She was a true fighter.  Ro on this site I think has been batttleing this monster probably longer than anyone and could probably answer all your question.  Several survivers of long standing don't post too often.  Try Ro here or by her email through this site.   Best, debra   

Goldheart
Posts: 36
Joined: Sep 2013

I  am so sad sad sad by this news. I read all the posts and was inspired by Daisy's story. It's so hard to keep my hops up.

germanlady
Posts: 20
Joined: Nov 2011

bump

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

It is with great sadness that I make this post on behalf of my Mother, Linda Procopio. She passed away today after her long fight with Uterine Cancer. The Cancer Survivors Network Community provided Mom with wonderful support and my family is eternally grateful to you.

Mom was blessed to be surrounded by our family as she passed and knew how loved she was in this life.

Our family will keep each and every one of you in our prayers.

Blondeandblue
Posts: 1
Joined: Dec 2009

You are still an inspiration. Over the past 3 years you helped more people dealing with UPSC than you know. So many read your updates and prayed for you over the years. Thank you for being an amazing and loving person. (((((((((( Linda )))))))))) Hugs to you.

Ladyebc
Posts: 9
Joined: Nov 2003

So very sorry to learn that Linda has lost her well-fought fight with UPSC. My sincere condolences to the family that was so precious to her to all her online friends who she supported while they battled this terrible disease.

Ladyebc
Posts: 9
Joined: Nov 2003

I am so sad to learn that Linda has lost her hard-fought fight against UPSC. I always hoped she would be, like me, one of the "lucky ones" who beat this cancer.

My sincerest condolences to the family that was so precious to her and to all her online friends who she supported as they battled this terrible disease.

Therev21
Posts: 4
Joined: Feb 2013

Just got the shocking news on Monday of UPSC and I am terrified! I have a PET scan tomorrow and surgery on 2/19. Won't know my stage until surgery.
Any words of encouragement would be greatly appreciated.

Rebecca

debrajo's picture
debrajo
Posts: 776
Joined: Sep 2011

Hi!  Sorry to meet this way, but soooo glad you found us so early.  I am UPSC also and I am 2 1/2 years out of treatment!  Don't freek out to much...the diagnosis is a lot to handle now.  DO NOT RESEARCH ON THE NET!  Old stuff and badly mis-information.  Some of the reports are 20 years old!   The UPSC is a bad type of cancer and is agressive, but after surgery I had the standard six rounds of Taxol and Carboplatin and five rounds of internal radiation.  It's hard, but so very doable!  Try not to stress(very bad) rest, take this in baby steps, breath, and smile!  We are here to help, there are several UPSC ladies here besides me.  Ask ANYTHING, there is nothing out of bounds.  I am up late every night if you want to talk,my internet is spotty, but I try to get on every day.  Don't expect the worse, there is life AFTER cancer!  Best, Debrajo

Therev21
Posts: 4
Joined: Feb 2013

DebraJo,

Thank you for your words of encouragement...it means so very much and it helps! Doc told me not to go on I Internet....which, of course, I did...big mistake! No further research on my part--planning to trust my oncologist and move forward.

Thanks again!

Ro10's picture
Ro10
Posts: 1428
Joined: Jan 2009

Sorry you have you join us.  Wishing you well with your surgery and hoping that you have a low stage.  I too have UPSC.  Fell free to ask any questions you have.  Someone here probably had the same questions.  We all know what a shock it is to hear the word "cancer".   Hope your PET scan is negative.  In peace and caring. 

Therev21
Posts: 4
Joined: Feb 2013

Thank you so much for your words of encouragement! Means a lot!

Rebecca

MTheresa
Posts: 6
Joined: Mar 2013

I'm new to this, too.  I had my surgery 2/7/13 and was fortunate to have stage I, if you can call any of it fortunate!  I had been spotting since April of 2012 and trying to find out the cause.  They kept thinking it was fibroids that were leaking because all of my tests came back negative until an endometrial biopsy January 2013.  Very scary.  I start treatment around the 1st of April when I'm healed from the surgery.  I'll be praying for you.  Everyone I know and love has been praying for me and I believe it has helped.  I hope you have good people around you, Rebecca.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 475
Joined: Mar 2013

Therev21,

It is COMPLETELY overwhelming and Debrajo is correct, you are not alone.  Please come back here to ask any questions.  You are lucky, you found this site early.  I just found it now and I have finished the treatment regime in December and think the women here could have helped me tremendously.

There are people here that have walked in these shoes before you and whatever we have to share we will. 

 

forida
Posts: 3
Joined: Feb 2013

Hello everyone,

My mother was diagnosed with UPSC and underwent surgery 2 days ago. Her surgeon believes that the cancer was confined to a polyp but we won't be certain until after pathology. If the pathology report indeed indicates confinment, her surgeon is recommending just observation (no chemo or radiation). This is somewhat worrisome because from what I've read here and elsewhere (for example, Dr. Lu at MD Anderson), this cancer should be treated aggressively even at an early stage. In addition, we spoke to a surgeon at Sloan Kettering who is also advocating conservative post-op treatment for early stages. I don't understand why the discrepancies. My mom is 73 with no other major health issues. Perhaps it's her age?

Anyway, we're getting ahead of ourselves and should wait for the results from pathology. At that point we can discuss all this with her doctor. In the meantime, we're making arrangements to get additional opinions.

God bless.

 

sunflash's picture
sunflash
Posts: 154
Joined: Aug 2011

Forida,

I'm glad you're seeking more opinions. I was diagnosed with UPSC which was also confined to a tiny polyp (less than 1/2 centimeter). My doctor who is located in Houston and worked in the past at MD Anderson said she would never recommend just observation for this aggressive cancer. I was treated with 6 rounds of chemo and had taxol/carboplatin which is standard treatment for this cancer. I would think that even at 73 if your mother has no other health issues she would be able to handle chemo just fine.

I do see a wide range of opinions on radiation, but chemo seems to be what most doctors recommend. This is my second cancer and I've had prior radiation so couldn't have been prescribed that, although my doctor told me she wouldn't have recommended radiation for me anyway. I've noticed that many doctors do prescribe radiation.

Please keep us posted as to what you decide to do......I know how difficult this is.

Sending hugs and prayers.........

 

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

I, too, was diagnosed with Stage 1a UPSC carcinoma, confined to a polyp, and was given several choices of treatment: 6 rounds of carbo/taxol followed by several vaginal brachytherapy treatments (generally 3 treatments, but some radiologists break the dose into 5 treatments to further minimize side effects); chemotherapy alone, radiation alone, or observation. My gyne/oncologist strongly recommened choice #1; and based on what I had read, I agreed that I wanted to hit the cancer hard and fast and give myself the best chance of "cure."

In 2005, the Yale University School of Medicine completed a study that reviewed the effectiveness of platinum-based radiation and vaginal cuff radiation in the largest group of women with Stage 1 UPSC ever to be studied up to that point. These are the study results, taken from the second article listed below:

Stage IA patients with no residual uterine disease had no recurrences, regardless of adjuvant therapy (n = 12). Stage IA patients with residual uterine disease who were treated with platinum-based chemotherapy had no recurrences (n = 7). However, 6 of 14 (43%) stage IA patients with residual uterine disease who did not receive chemotherapy recurred. The 15 patients with stage IB UPSC who received platinum-based chemotherapy had no recurrences but 10 of the 13 (77%) stage IB patients who did not receive chemotherapy recurred. One of the 7 patients with stage IC UPSC who received platinum-based chemotherapy recurred and 4 of the 5 (80%) stage IC patients who did not receive chemotherapy recurred. Overall platinum-based chemotherapy was associated with improved disease-free survival (P < 0.01) and improved overall survival (P < 0.05) in patients with stage I UPSC. None of the 43 patients who received radiation to the vaginal cuff recurred locally, but 6 of the 31 (19%) patients who were not treated with vaginal radiation recurred at the cuff. 

MD Anderson also recommends adjuvant treatment for ALL patients diagnosed with UPSC unless the patient has medical issues that would make the risk greater than the benefit. The rationale is discussed in the first article listed below, an excerpt of which follows:

According to Dr. Lu, serous malignancies can be aggressive regardless of the amount of tumor present. "The recurrence risk and patterns are the main reason why we would be very nervous about recommending observation alone," she explained. "Even when there is no sign of invasion, we know that UPSC spreads in other ways and has a high recurrence reat." However, aded Dr. Ramondetta, "It's hard to tell a patient who has a disease confined to a polyp that she needs extensive treatment, especially if there is just a small percentage of serous histology present." 

I would suggest doing your research and then finding a gyne-oncologist whose treatment recommendations are in alignment with what you have decided is best.

 

http://www2.mdanderson.org/depts/oncolog/articles/10/4-5-aprmay/4-5-10-compass.html

http://www.ncbi.nlm.nih.gov/pubmed/16005947

 

Jill

 

cheerful
Posts: 123
Joined: Apr 2011

 

Hi Forida:

  I am responding to your e-mail regarding your Mother's UPSC - confined to a polyp.  I was diagnosed in February of 2011 (2 years ago) and my cancer was a large polyp - 5 centimeters.  My gyn/oncologist recommended very aggressive traetment consisting of 6 rounds of carboplatin/taxol and 3 rounds of radiation. He also recommended surgery in between to remove my omentum and check my lymph nodes.  I did have the 6 rounds of Carboplatin/Taxol and the 3 rounds of radiation, but I was very weak after 3 rounds of chemo to have gone through more surgery for the omentum and the lymph nodes so I decided not to have the additional surgery for the omentum and lymph nodes. I know just about most women have the omentum and lymph nodes removed - and I did not. My oncologist did say that if any of my lymph nodes had lit up the first few months after chemo, then he definitely would have recommended me having the surgery, but they did not so I did not have this additional surgery done inbetween. I have been having cat scans every 6 months except for the first year (I had 3 cat scans the first year) and so far, I am disease free with No evidence of cancer - for which I am very grateful and thankful.  My oncologist recommended very aggressive chemo treatment for me even though I just had a large polyp.   Actually, my gynecologist did my surgery and did not know at the time that I had cancer and then after I had my hysterectomy, my gyn introduced me to the gyn/oncologist. My gyn has known the oncologist for many years.

   After I was diagnosed with UPSC a couple of weeks in the latter part of February, I went home and looked up UPSC on the Internet and read that without getting chemo you have over a 40% chance of reoccurring.  I knew I definitely wanted to have the chemo and radiation done even when I was in his office as this is a really aggressive cancer.  To me, if you don't have the chemo and radiation, you are playing russian roulette with your life and are taking a huge gamble of whether or not the cancer will return.  I figured yes, I would lose my hair, but it would always grow back again and it was only temporary.  I immediately went out and looked for a wig and bought one a few weeks later and it looked so very natural.  Some people did not even realize I was wearing a wig as it looked very natural. My hair now has come back and looks great although the texture is not the same, but it still looks really good.  To me, I wanted to live and enjoy life and do everything I could to survive this cancer. My oncologist did tell me in the beginning that I would survive the cancer based on the histology of the cells, my age being 59 at the time and my good medical history so that was a very big relief and comfort to me knowing this.  I have since my diagnosis changed a lot of my eating habits for the better and am eating a lot healthier.

  I would not hesitate for a moment to have the chemo and radiation done. It will save your mother's life and the cancer most likely from reoccurring providing she has the chemo and radiation done.

  My oncologist is in the Phila. suburbs and has many years of experience and is one of the top oncologists in the country.  

  Anyway, your mother should be able to go through the chemo as it is doable.  I had very minimal problems with chemo although I did have constipation and could not eat for a few days afterwards and after about 5 treatments, I did have to have a transfusion and Neulasta shot as my platelets were really low and after the shot and transfusion, I felt a lot better and it did really help me feel stronger.

  I wish your Mom all the best and hopefully she will decide to go through chemo and radiation  Keep the ladies here posted.

All the Best,

Cheerful

 

   

 

 

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network