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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.

anna31
Posts: 1
Joined: Mar 2010

Hello, I am new to all of this and will be starting my first chemo this Thursday. I am 31 and have stage 3c papillary serous cancer. I can't tell you all how much your postings about your treatment has helped calm me about radiation. I'm terrified of it and what it may do to my sex life with my husband but hearing how you all have handled things has helped me out a lot. Thank you so much!
Anyway, hope to start coming here more often.
Take care,
Anna

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Sorry you are having to join our sisterhood. I too have Stage III-C UPSC. I finished my initial treatments in August 2009. All of the treatments are very scary because you do not know how you are going to react to the treatments. As you read the posts here you see how differently people react to the same treatments. I hope you have a port for your chemo. We are here to answer your questions and address any concerns you might have, or to just listen to your fears. My biggest fear before chemo was that I would be nauseated from the chemo. And I never was nauseated from the chemo. But until you go through it, you don't know what to expect. Wishing you good luck Thursday on your first chemo. Hope you have someone to go with you. In peace and caring.

Charity_
Posts: 1
Joined: Aug 2009

My Mom was just diagnosed with UPSC; stage IV.
I have so many questions... Could you help me find some answers?
How uncommon is this cancer?

They were unable to remove her uterus, because the tumor was wrapped around her kidneys. They are doing chemo in order to shrink the cancer enough to remove the uterus.
Has any of you had it done this way? Was it successful?

Mom's cancer is spreading so quickly. It spread a bunch within the couple of weeks prior to chemo.
Is this unusual?

She is getting so sick, so quickly. We are wondering about hope.

princepack's picture
princepack
Posts: 18
Joined: Dec 2009

OK. I still don't know how many here have UPSC. There are 390-some responses here. Does anyone have an "official" count?

california_artist
Posts: 850
Joined: Jan 2009

Thanks for your help.
Claudia

princepack's picture
princepack
Posts: 18
Joined: Dec 2009

OK. So, since I have nothing better to do today... I went through this blog and counted. Looks like there are 12 of us here with UPSC and 3 whose mom's have UPSC to bring us to a total of 15. I wrote down all of your screen names. You will all be on my friend's list as soon as I get some food in me. Can't eat after 11 am today because of my surgery tomorrow and it is 9:30 am now. I gotta get eating (haven't even had breakfast yet)!!!

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

When I signed on this site in January I was the 10th person with UPSC to sign on thus the Name Ro 10. On my June 16th post I wrote that we had "60 sisters" who had signed in to this site by then. I know there have been many more that have signed on since June. It is sad that we have had so many ladies and family members that have signed on to this site. It does seem that there are many more young ladies signing in. I wish the number would not increase, but I know that won't happen.

Wishing you good luck with your surgery. In peace and caring.

yougoodsis
Posts: 3
Joined: Jan 2010

This is my first post. I would love to hear back from any of you!
My sister was diagnosed 12 months ago at age 55. She was incredibly healthy in every way at diagnosis. She had surgery/hysterectomy Jan 2009, then 5 months of chemo followed by 2 months of radiation. After a clean PET scan a couple months ago, her Dr. believes the cancer has returned. I would appreciate any suggestions at this point. Has anyone had any success with alternative medicine? She is being treated by an experienced physician who is board certified in Gynecologic Oncology and Obstetrics & Gynecology. However, she had not received a second opinion.

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

Like your sis, I had no symptoms or risk factors for this cancer. I have stage 3a UPSC (diagnosed 9/08) and had surgery and chemo - no radiation. So far I'm in survellance - I am waiting on my routine blood work to see if that still holds.

I utilized "conscious decision to be well" (don't know official name for this!), healing touch (energy work - like reiki)and guided imagery during my treatment. Since I have continued both and added yoga and lifestyle changes ( improved exercise, stress mgmt and diet). I work full time now (80% during my treatment). I strongly recommend "Getting Well Again" by O. Carl Simonton - others that I know believe in his work too. I followed his recommendations to the letter. He had success with terminal cancer patients and was pioneer in western alternative medicine.

This cancer is tenacious. Maybe I'm just lucky so far - I don't know what the answer is & don't think anyone knows. I wish the best for your sister.

Read the many threads on this board for input from others. Mary Ann

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

thought I'd already posted on this thread...darn my Swiss-cheese memory!

Diagnosed with stage 1b endometrioid and UPSC and had a total hysterectomy, bilateral salpingo-oophorectomy, omentectomy and removal of 25 lymph nodes Feb 2008. Lymph nodes & washings negative. Had 6 chemo treatments (taxol + carboplatin) but no radiation...and NED ever since.

Hugs,
Cecile

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

awesome - I wish you many more!!

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

I posted yesterday in Roll Call thread, a relative newbie to this site. I'm about to head to gyn-onc appt. re going forward with second course of chemo for new issues found Sept - Dec '09. I put it on hold over holidays and to give me time to think it over. He had commented that it's a personal choice as no real evidence that chemo ultimately prolongs life and no Rx could add to quality of life. I'm in pretty good health and have no symptoms at this time - except the constant worry and fretting, etc. My orig diagnosis was by endometrial biopsy at end of '07. Major debulking surgery Jan '08 with post-op complications from a bleeder after a clamp slipped off. Course of Taxol and carboplatin - 6 rounds; no radiation due rec. due to extensive mets thru-out abd including in spleen. CA125 normal after first few rounds of chemo.
Why UPSC??? Had taken Tamoxifen x 6 1/2 years for recurrent breast cancer - could this be a factor???
Time to head out -- btw, my Doc was quoted in San Diego Union Tribune today re new screening recs for cervical cancer - He's dept head for Gyn-Onc at UCSD Medical Ctr. I'll see what he has to say re my issues.

cathair
Posts: 3
Joined: Jan 2010

Hi there- I'm Tara and my dear friend has been recently diagnosed with UPSC. I would love to know what you think about her diagnosis. I have never been through this with someone so close to me, and as I am sure your friends were for you, I am heartbroken for my friend. Thank you so much, in advance for any advice you might have to offer. Her exact words: "I have papillary serous pleura differentiated high grade carcinoma that involves the cervix, vagina, uterus, lungs, liver, lymph nodes and breast". I know this is very serious- there will be chemo, but no surgery. I am so scared for her...
Thank you,
Tara

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Your friends diagnosis does sound very serious. If no surgery is involved, was the diagnosis made from CAT scans or PET scans. I hope your friend tolerates the chemo well. She is lucky to have a concerned friend like you. Cancer is very scary. Being there to support your friend will be important for her. Does your friend have someone to take her to chemo treatments. If not that is something you could do for her. Having a "listening ear" will also help her. Feel free to ask any questions you may have. We will try to answer them. In peace and caring.

jctavener
Posts: 2
Joined: Jan 2010

I'm sorry that I only now saw your post. I was diagnosed with serous carncinoma in June 2004 and had a hysterectomy, radiation and chemo. I have been cancer free 5 1/2 years but I also attribute this is a strong exercise regiment, weight loss and a full spectrum of anti-oxidant supplements. Email John Laird at Chatham University for consulation. I used someone else to begin but I think he's the best. Good Luck. Jo Tavener

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Wow Jo that is wonderful to hear how well you are doing. Do you recall what stage you were at when diagnosed?

On to some exercise and the anti-oxidants :-)

Annette

crummiemeals
Posts: 3
Joined: Jan 2010

My mom was diagnosed with this cancer in Jan. 2009 stage 3. She has been through many different chemos, but non seem to be helping the lymph nodes. She is now in the hospital dealing with the pain in her pelvic region and her back. We found out today that her back now has an inflamed node and the caner is on one part of the bone in her back. Can this be stopped? She will be doing radiation, but will that work?

What else should I look into for my mom? I am really looking for some guidance on what to do to help her fight this.

Thanks

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

I'm sorry that you and your mom are going through this. You are a wonderful support for her, I'm sure.

My only suggestion is to look into alternative therapies to supplement what she is getting medically. There are several threads on this board that talk of diet, meditation, massage, healing touch, etc. I used these and they seemed to help me - I have the same kind and stage of cancer as your mother.

My prayers are with you and your family. Mary Ann

crummiemeals
Posts: 3
Joined: Jan 2010

Thanks Mary Ann, I am sorry about what you are going through too. I had never heard of this before my mom told me. Do you mind if I ask when you were diagnosed? Have you been tolerating the treatments your doctors are using? That is one of my mom's biggest issues. She is having horrible side effects to the chemo.

Best-
Megan

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

I am one of the really lucky ones. I tolerated my treatments very well - maybe this is due to the alternative therapies I practiced and still do. I learned alot from reading Simonton's Getting Well Again (I highly recommend this book) and if you want copies of the meditation tapes I used I will gladly send to you - contact me at daisyelder@comcast.net if you or anyone is interested).

I worked throughout my chemo and I did not have radiation (my doc's decision). I am now ONE YEAR post completion of treatment and will go on an adventure trip to Belize to celebrate!! I've been exercising and pumping iron like crazy for the last several months. I feel great!! Everyone says I look great and my markers are low (thank you Lord!!).

Like I said, I am very fortunate and so grateful for a wonderful quality of life. Blessings to you all, Mary Ann

crummiemeals
Posts: 3
Joined: Jan 2010

Mary Ann,

Thanks so much for your message. First of all congrats to you and the fact that you are 1 year post treatment. That is such positive news for you and your family! It is also positive for us out there looking to here this kind of information.

Wow what a great treat you to go on a get away trip to Belize, what a well deserved adventure.

I would like to get a copy of the motivation tapes and I will contact you via email. I also just bought that book from reading about it on this message board. I wanted my mom to read it, but she has been really out of it recently.

Can you give me any insight on these alternative therapies? I have been looking on the message board to try to find it.

My mom is back in the hospital for the 3rd time within the month. She got dehydrated again which made the pain really bad again. I just wish there was more I could do for her. I would do anything to help her with this.

I am trying to hold out hope that things can get better, but at times it gets hard.

Thanks so much for messaging me back. These messages have been so helpful to me!

Cheers to you!

Best ,

Megan

decemberfox's picture
decemberfox
Posts: 1
Joined: Jan 2010

Thursday, Jan. 7, 2010 was the day my Gyn. told me my lab results came back positive for cancer, uterine cancer to be specific. I am scared.

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Sorry to hear that you are positive for cancer. Do you know what stage or grade? The stage is where the cancer is and the grade is the type of cell. I was initially told that I had a Grade 3 (I believe that's the UPSC) which is the same as ovarian. However, I was then downgraded after surgery to a 2 (less aggressive).

My prayers and thoughts will be with you and all the ladies through this cancer journey. If you haven't already, contact your local cancer society. They offer many services including support for you and your family. It's an amazing organization.

Susie

Caradavin
Posts: 23
Joined: Jan 2010

I was diagnosed with it in June 2009, but am in remission. I'm sorry. I still feel like I have it. I am still on treatment and have cramps, and I am not finding it easy to believe that it's gone, really.

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

I think we all count - once we have the diagnosis we are a member of the club!! I'm glad you are in remission. That's the best place to be!!

Blessings, Mary Ann

GabbyMaude's picture
GabbyMaude
Posts: 4
Joined: Dec 2009

Hi! I was diagnosed in December with stage 4 UPSC. No surgery was advised as the cancer is metastatic and has spread as far as my neck lymph nodes. I am currenty being treated with the 'standard' chemo - taxol and carboplatin. I need to ask more about the diagnosis and understand better why I am stage 4, and why NO surgery is possible. The tumor is extensive and has impacted many organs in my abdomen. Thanks for your post, I need to have contacts to gain more information about any possible treatment for my advanced cancer. The strange reality is that although I have some attending issues (incontinance, eating problems, extreme weightloss in two months (20 lbs.) I actually feel pretty well. I am of course hoping that the chemo will significantly shrink the tumor - that with my positive attitude and visual imaging through meditation. Thanks again for your note, any information or resources welcome! Best wishes to you for successful treatment. Gabby Maude

Rona Badger's picture
Rona Badger
Posts: 1
Joined: Mar 2010

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

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I am sorry you are joining our sisters in your fight of UPSC. I too have stage III-C UPSC. I am glad you made it through your treatments. I love your positive attitude, and I hope you will get the good news on March 24. Your hair will begin to come back so you won't look like a turtle. Caring Bridge is a great tool to communicate with others and to get postive feedback from people. I am so glad you are blessed by the love of many people. That is so helpful. Look forward to hearing more from you. In peace and caring.

Barbara_Calif
Posts: 5
Joined: Mar 2010

My story is not very different than yours. Here is my story:

In the fall of 2008 I began having symtoms and went to my Dr. She sent me to a Obgyn to have a polyp removed from my cervix. Everyone said that was all that was wrong. The polyp was diagnosed as benign. The symtoms continued and I went back to my Dr. who sent me for all kinds of tests....including tests for my kidneys and bladder. By this time it was Spring of 2009. A tech, who was doing an ultrasound on my bladder decided to look around and found the growth in my uterous. In May I was diagnosed with slow growing uterine cancer. The first available date for surgery was mid-July (since it was considered a slow growing cancer the Dr. said not to worry).

My surgery (a radical hysterectomy) was done with the use of a robot so I have five small scars and only spent one night in the hospital. The cancer had metasticized so they also took out 52 lymph nodes. My tumor was taken to a tumor board and rediagnosed as UPSC stage IIIc. I had a port inserted and began chemo in August....6 sessions, two half days each every 21 days. I had the last set Dec 7th and 8th. The main ingredients were Paclitaxelm, Adriamycin and Cisplatin.

Of course, I lost my hair, eyebrows, eye lashes.....every hair except 3 stray eyebrow hairs that were growing in strange directions (so I plucked them). I bought a red wig since I've always wondered what it would be like to be a redhead. It looks pretty good.

I began to feel much better around the middle of February. I went for walks all during the chemo and am now walking and exercising just about every day. It helps a lot. I still get twinges of numbness in some fingers and toes but less all the time.

At this point my hair is growing back in....the couple I get on occasion on my chin came back first....they must be really hardy from all the plucking I've done over the last few years. Needless to say, I have not allowed them to stay.

I am grateful for the love of wonderful friends and family. I feel really positive about the future and even when I get scared I try not to lose my sense of humor. I'm going for my 3rd CAT scan this week. My Dr. has me on an every two month visit schedule and says we're not going to remove the port...so I plan to just enjoy each day.

I am so very glad to have found you all. Barbara

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Glad you did find this site. I have found it helpful in so many ways. Glad you made it through you chemo. You are the first one who has received Adriamycin. And most of us had Carboplatin instead of Cisplatin. I hope you continue to get good results from you follow-ups. I know you will look forward to your hair growing back. Keep that positive attitude and continue to enjoy each day. In peace and caring.

Barbara_Calif
Posts: 5
Joined: Mar 2010

Thank you for the welcome note. I see that you have belonged for over a year. That's good news. How are you doing? Do you know how many women with UPSC are regularly active on the site?

Adriamycin is a trade name for doxorubicin hydrochloride. It's red and they like you to drink lots of liquid (plus what they give you through the IV) before, during and after getting it so it will wash through quickly since it can harm your kidneys. It is supposed to stop the growth of cancer cells. I wish I really understood how the doctors make decisions about which drugs a patient will get. Sometimes I feel a bit like a science project.

Barbara

RGW
Posts: 59
Joined: Mar 2010

I was diagnosed with UPSC on February 10, 2010 and underwent a radical hysterectomy and the whole shebang on March 2nd. I live in the Washington, D.C. area and am home recovering. I am the third generation of women in my family to have a gynecological malignancy. My grandmother had uterine/ovarian in 1958 (survived), my mother had uterine/ovarian in 1982 (survived), and my cousin died of breast cancer in 2008 at age 42.

I tried to read some of the postings on this site prior to my surgery, but found it too difficult. I now realize that there are so few women with UPSC, seems that they are all on this site. So, strength in numbers.

luckyandblest
Posts: 11
Joined: Feb 2010

My wife was diagnosed with UPSC in December 2009 and had surgery January 6, 2010. They took out everything. We are now in chemotherapy, having just finished her first treatment.

Barbara_Calif
Posts: 5
Joined: Mar 2010

I hope your wife is doing okay on the Chemo they have chosen for her. Please wish her well for me. I finished my chemo in December and am now feeling good. I think one of the reasons I made it through the Chemo as well as I did is because I made myself walk outdoors as many days as I could and I got great advice from an Oncology Nutritionist.

Barbara

Barbara_Calif
Posts: 5
Joined: Mar 2010

Dear RGW, I'm still not sure I'm doing this correctly. It takes me a bit of time to refind this group each time....however, I'm long on determination and have also only found women with UPSC on this site.

I was sorry to read that your family has had to face cancer so many times. I hope your recovery is going well.

I wrote earlier about my diagnosis so I won't go through it again. I'm on a fairly short leash right now. I'm seeing an Oncologist every other month and the Gynocolgy Oncologist every three months. I just had my third CAT scan, since I was first diagnosed in August, on Thursday. Nothing new....which is great news. I've also been attending a "transitions" class for patients who have recently completed their treatment. It covers excercise, nutrition, emotional and physical changes and what information we need to track going forward. It was created by the Lance Armstrong Foundation and takes place at the Wellness Community (a wonderful support organization that provides free programs for cancer survivors and their families and care-givers). I haven't found anyone there so far with a UPSC diagnosis.

Wishing you a speedy recovery from the surgery,

Barbara

Barbara_Calif
Posts: 5
Joined: Mar 2010

Dear RGW, I'm still not sure I'm doing this correctly. It takes me a bit of time to refind this group each time....however, I'm long on determination and have also only found women with UPSC on this site.

I was sorry to read that your family has had to face cancer so many times. I hope your recovery is going well.

I wrote earlier about my diagnosis so I won't go through it again. I'm on a fairly short leash right now. I'm seeing an Oncologist every other month and the Gynocolgy Oncologist every three months. I just had my third CAT scan, since I was first diagnosed in August, on Thursday. Nothing new....which is great news. I've also been attending a "transitions" class for patients who have recently completed their treatment. It covers excercise, nutrition, emotional and physical changes and what information we need to track going forward. It was created by the Lance Armstrong Foundation and takes place at the Wellness Community (a wonderful support organization that provides free programs for cancer survivors and their families and care-givers). I haven't found anyone there so far with a UPSC diagnosis.

Wishing you a speedy recovery from the surgery,

Barbara

hope_floats
Posts: 5
Joined: Aug 2011

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

Always Hopeful
Posts: 234
Joined: May 2010

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

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Sorry you have had to join our group. I understand your statement about this board being difficult to search. This particular posting is very long. If you type in key words to the search box, you may find posting that are of interest to you. Otherwise you can start a new discussion and ask your questions, and others will address that discussion topic.

I am glad you are tolerating your chemo with few side effects. I hope that continues throughout the 18 weeks. You are one of the few that have been getting taxol every week. Most of us had the taxol, carboplatin every 3 weeks. It will be interesting to hear what your response will be to the weekly taxol.

What stage did they classify you at with 2 dots on your colon. I was diagnosed at Stage III-C as I had lymph node involvement and metastic cells in the abdominal washing.

Good luck with the rest of your treatments. In peace and caring.

Always Hopeful
Posts: 234
Joined: May 2010

You are so right about this being a long posting. I have listed it as a favorite and then find that clicking to the last page is the most expedient way of reading new entries. Thanks for you suggestions, too.

Yesterday (Wednesday, 5/5/10), I completed the first cycle of my six cycles of chemo. My white blood count was just below the normal level but my medical oncologist OK'd the Taxol treatment. I am, though, scheduled for another blood test on Monday, after which a decision will be made about how to proceed. As the nurse explained to be, I am not a candidate for Neulasta since it is slower acting over 14 days and is prescribed for those on the 3 week regimin since you need to be off treatment for the 14 days. Neupogen might be a possibility. The chemo nurse felt that the carboplatin was more of the reason for the dropped count than the taxol. I will know more after Monday, I guess.

The decision to go with the taxol every three weeks was my choice based on the recommendation of the medical oncologist. She explained the more traditional protocol of every three weeks but then stated that current research has led to the protocol that I agreed to...more effective, less side effects. At first I thought it was the regular dose divided by 3 and administered over each week. What I did find out was that more of the Taxol is being given each week than just 1/3. Thankfully, other than flushing on the second day from the Decotron which by the way makes me eat like a beast, I still have not experienced any terrible side effects. My premeds must be controlling that.

Pre meds: each week -- decodron, pecid, benedryl (all IV)
In addition: Carbo week -- Emend (one pill administered pre chemo, one pill taken each day for the next two days. (Emend is taken during Taxol only week.)
Taxol week -- Reglan (IV), pills to take at home, every six hours as needed. Only took one after the first week.

As far as my stagine goes, my gyn-oncologist, as well as the medical oncologist, have explained the difficulty in staging this. I need to verify this again. The gyn-onc refers to the serous cells as being "goofy" cells that do not play by any of the rules of usual uterine cancer cells. Even though none of my other gyn organs were involved, nor were my lymph nodes or channels, since the cells were found on my colon, an aggressive approach needs to be taken. As she said, "Other cells might be floating around and we do not want them to find a home." My feelings, "If they were there, they could be elsewhere...therefore, let's get them, if they are there."

Radiation will follow the chemo. The gyn-oncologist believes in dealing with one thing at a time so we have not gone into great detail about this. Initially I was somewhat taken aback by this but have come to realize that it takes so much energy to absorb and understand things that are happening now. However, she is forthcoming with any questions I do have.

One of the major issues I am now dealing with involves my job. As a NYC middle school teacher, I have almost enough sick days accumulated to get me through the rest of this school year. I am also blessed with dear friends who are willing and able (according to the guidelines) to donate some of their days to make up the difference. My chemo treatments, if everything goes according to schedule, will end the end of August, to be followed by internal radiation. I have begun to explore the possiblities that exist for me for the next school year and am toying with applying for a Restoration of Health Sabbatical at 60% pay. This will enable me to stay on payroll with my current benefits. Although I believe in always being hopeful, the reality is that only time will tell when that hopeful wish has been realized. I don't really know much about the radiation's effect or, for that matter, how I will tolerate the rest of the chemo. Some have mentioned Social Security Disability to me but from what I have researched, I don't think I fit the criteria, nor am I sure it is best for me at this time. I would appreciate hearing from anyone who might have investigated this further.

Well, Ro, this has become a rather long posting. I might, as you suggested, cut and paste it into a new discussion thread.

Thank you so much for responding to my posting. I wish you continued health and peace...JJ

hope_floats
Posts: 5
Joined: Aug 2011

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

boo.brantley's picture
boo.brantley
Posts: 1
Joined: Jun 2010

My beautiful wife was diagnosed with UPSC in March 2010. Her tumor was very large and situated so that surgery was not possible. 3 rounds of carboplatin/paclitaxel later the ct scan showed a significant shrinkage and surgery was scheduled for a June 1, 4 weeks later. Surgery revealed Stage IV, Grade 3, with a metastasis to omentum, which was not removed in the radical hysterectomy. She is recovering well from surgery. We are seeking a radiology oncologist to guide us through the radio therapy world. Hopefully we can find a doctor to do another round of chemo therapies. Any suggestions in choosing a good oncologist for the continuation of the battle? Does anyone know anything about the use of monometric or fractional chemo in the fight of this particular type of uterine cancer?

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

Many oncologists are unfamiliar with this rare and aggressive cancer. Find an experienced gyn-oncologist to guide you. And get a second opinion or more if necessary.

I am pursuing alternative treatment (healing touch, massage, yoga, diet) along with standard western medicine. Check with your docs about any dietary change while getting chemo.

Best wishes to you and your wife. This site is a good support and information resource.

Mary Ann

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Welcome to the site, but sorry to hear of your wife's diagnosis. I had 3 chemo treatments and then radiation and then 3 more chemo treatments. They call this the sandwich treatment. I had my surgery before the treatments though. I was diagnosed with UPSC Stage 3-C. Some people on this board have had the fractional chemo. One for a recurrence, and some as intial treatment. Most have had the chemo every 3 weeks.

Glad your wife is recovering well from her surgery. You will both remain in my prayers. Looking forward to further posts from you or your wife when she is up to writing. In peace and caring.

phyllisj
Posts: 2
Joined: Nov 2009

I started this journey in April 2008 but unfortunately only found this site in Nov 2009 when I had my 1st reoccurrence. It came back very heavily as it was not picked up for about 5 months. ( I'm in Montreal, Canada and as you may know we have Medicare. As a result, everything is paid for, which is very nice, but at the same time we do not have enough Drs. or money for the system to actually have the most timely delivery of services at all times.)

In any case, what I'm really curious to know is if anyone else is now similarly dealing with reoccurrence and if so, what chemo etc. are you receiving? I am now a stage 3, although after hysterectomy back in June 2008, I was stage1b. With the reoccurrence, I was put on carboplatin and caelex for an indeterminant number of rounds once a month. Next week I get #8 and am also scheduled for #9 on July23. I will then have another Pet/CT scan which will help them to decide where to go from there. My last Pet/CT, in April 2010, showed a good reduction of metastacies but also showed 3 new "spots".

Thanks for all the wonderful posts. I haven't read them all but they were very informative.
Best to all.

Nina_Canada
Posts: 1
Joined: Aug 2010

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

Mannhill
Posts: 3
Joined: Sep 2010

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's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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
Posts: 2
Joined: Jan 2011

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
Posts: 88
Joined: Dec 2010

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.

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