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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.

deanna14
Posts: 738
Joined: Oct 2008

Peggy,
So sorry for all of your troubles. I hope your husband is doing better now and on the road to recovery.
Don't you worry about us, you just take care of your hubby and get him well and home with you where you know he will be well cared for.
We are all getting along well and have even added a new member.
Hang in there and get some rest!
Prayers to you and your husband.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

So sorry to hear what your husband and you have been going through. Is he still in the hospital? Let us know how he is doing.
I was starting to wonder what happened to you. The last time you posted you said something about getting your 3 month check-up at the end of the month. With all that's happened you probably weren't able to do that.Praying for your husband's quick recovery... Teresa

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

What an ordeal! My heart goes out to you, girl! That sounds absolutely hellish. And the bite is that they will charge you an arm and a leg for that inhumane treatment; that really puts the cherry on the top of a bad time (understatement) and poor care. All I can do is send a cyber hug, and share in your anger. ((((Peggy)))) I had EXTREMELY poor care, with the exception of my wonderful surgeon, when I was at Hershey Medical for my hysterectomy. I had no idea medical care could be that shoddy, but sometimes it really is.

8:15AM bloodwork for me tomorrow and probably a transfusion unless this pounding heart and blood roaring in my ears is my imagination.

I sent an email to the webmaster here asking if we could have our own Uterine Cancer Discussion Board instead of just this thread under Gynecologic Cancer. That way new topics we discuss could be 'searchable' for others doing research. I'll let you know if they reply. I think shorter threads within our own Board would load faster and work better. Anyone rather not, if they go along with it?

One more hug: (((Peggy)))))

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

I put my initial post on again, but do not see it. It says I have 4 posts, but have not seen any on this site. Any suggestions on how to get my initial post and picture on the site? I am all for getting it easier to load and review posts. I have had problems, which I don't know how to correct.
Peggy I am sorry to hear about your ordeal with your husband. Pancreatitis can be so painful, and stressful. Not that you need any of either.
Linda I hope your blood work goes okay, but it sounds like with your pounding heart you need some more blood. Theresa and Marge I hope you are doing well. Hugs to all of you.

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

Hi, Ro! This website has been hard to use lately. I think we have too many posts under a single thread and need our own Discussion Board like the Ovarian Cancer Sisters have.

I hope this is okay. I will go ahead and post your initial email to me, so the others here can 'meet' you.

RO's STORY:
"Unfortunately I too have USPC Stage 3-C. Our stories are so similiar its scary."

"I too found out I had an irregular Pap test. It was highly suggestive of adenocarcinoma. I then had and endometrial biopsy then and it was also highly suggestive of adenocarcinoma. I agree with whoever said "OUCH" on the biopsy."

"January 5 I had a robotic hysterectomy with removal of tubes and ovaries, 20 lymph nodes were removed and had an omentum biopsy. My tumor was so small 1.5 cm by 1 cm. It had not penetrated more that 50 percent of the uterine wall. However it was in 5 of the lymph nodes and there were metastatic cells in the abdominal washing."

"Again as you have stated the doctor said it was rare to catch it on a routine pap test. I had no symptoms at all so both my regular gynecologist and my OB GYN onocologist felt it was early stage and the hysterectomy would take care of everything. What a shock it was to get the results after surgery. Again my doctor was so suprised with the diagnosis.

"I had my first chemo Friday, 1/30/2009. I will get the sandwich treatment of 3 chemo of Taxol/Carbo. Have a rest period of 2 -3 weeks. The I will have 5 -6 weeks of radiation, then another rest period. The another 3 chemo treatments, each 3 weeks apart. I did have a reaction to the Taxol, so my 3 hour Taxol treatment ended up to be 5 1/2 hours. But at least I was able to get the full dose of medication. Due to the reaction I got double steroids, so I am hyped up tonight. Luckily I had not reaction to the Carbo".

"My daughter foung this site and sent it to me. I spent two days reading everything. I have so enjoyed reading all the blogs from everyone. They have been encouraging. I have tried to log on but they say I am not authorized to post anything. I wanted to post before my Chemo and tell my story. Can you give me any suggestions? I e-mailed the NCS site, but all they said was to make sure I was logged on. I thought I was logged on. I tried again tonight, but was given the same message. Any suggestions you can give me would be greatly appreciated. Thanks for letting me rabble on I guess it is a "hamster day" ( or night). My log in name will be Ro10, as I think I am the 10th person to join the USPC Sisterhood."

"I did not have a CA -125 done yet. I asked about it at my post-op visit and he said it would probably be elevated after the surgery. I am having on with my next blood draw. I have not had a CT scan either. I will ask him when I will have my first one. He said after treatments were completed they would be every 3 months including lab and pelvic exam."

"I am a registered nurse, so I know what all can happen. Sometimes I think that makes it scarier. I have taken care of so many cancer patients, but it sure is different when it is you dealing with the cancer. I have a great support system with my husband and family and friends. So many people care about me that it really touches my heart. My husband has been having a really hard time dealing with all of this, but he is doing better this week. I was prepared for the treatment. I think he was ready for a treatment plan but not the stage of the cancer. I was just glad I have 3 chemo and then the radiation and then 3 more chemo. Although I have to say that the chemo was not as bad as I had anticipated. I know it has just been one day, but I expected I would be nauseated through the treatment and days afterwards. I was nauseated for 9 months with both of my pregnancies."

"Thank you so much for all your information you have provided."
(From our newest UPSC Sister: Roberta.)

deanna14
Posts: 738
Joined: Oct 2008

I think it is a great idea.Also a reflection of the discussion that uterine cancer needs to be more recognized!Not to mention better screening is necessary. (soapbox).

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Welcome to the UPSC sisterhood Ro, the club that no one wants to belong to, wish there was a magic pill we could take and make this go away.Someday there probably will be. For now I'm happy we have found each other, it's comforting to know we are not alone in this.
My worst days with chemo have been the evening of the third day, 4th and 5th day. Feels like I have arthritis all over my whole body, especially my feet, legs, hips and hands. Did have the hampster effect 2nd day after chemo, wow did I get alot of stuff done...
Good Luck tomorrow Linda, I will be thinking about you and hope all goes well.
Special prayers for your husband tonight Peggy....

deanna14
Posts: 738
Joined: Oct 2008

Well... the hair loss has begun. All day today, my scalp has felt tender, like pins and needles sort of. I am sitting here surfing the web as sleep escapes me tonight. I was just running my fingers through my hair and realized it was coming out. Not a lot, but behind me in the recliner are a bunch of hairs and on my keyboard. Oh well, such is life these days.
Teresa, I found pretty much the same thing you are saying with my 1st treatment. I felt good, energetic for a day or 2, then the aching started in the afternoon of the third day and stuck around off and on for about 3 days. I took hot baths and mild pain killers at night so I could rest. I didn't have any nausea or vomiting.

shortmarge
Posts: 296
Joined: Nov 2008

Peggy, I'm so sorry to hear about your husbands experience. I'm sending you cyber hugs.

RO, welcome, sending you cyber hugs too. Interesting to see how you are getting your treatment, sounds like Peggys.

Linda, hope all goes well today. Take care of yourself. I'm all for the separate board also.

Theresa, seems like we all have that 3 day afternoon start and then the fourth day sucks. You do get a little more tired each time though. Cyber hugs.

Deanna, I'm with you with the Ouch hair. I have little stubbles and it hurts to put my bandana and hat on. I kept waking up last night because of it. Cyber Hugs.

My energy is getting better but come 3:00 in the afternoon I'm ready for a nap. The bottom of my feet still bother me but all else is getting better. I feel fortunate to have not gotten the cold my husband and daughter had. Even though my hands are raw, I believe it's all about that hand washing and keeping your hands away from you face.

You are all in my prayers.

MIND, BODY AND SOUL!

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Thank you all for the support and prayers. I am home. It is not going smoothly, but if we can just hang on here for awhile it should stabilize. Then back to the hosp for surgery. It sounds as if we are all taking a day at a time toward the sun. I feel like I can not wash the smell of oncology off from me!! Our daughter is happy to have a home again. I am so glad to see a new member welcome too! It would be awesome to have our site updated so UPSC girls could find us easier. The site can be a chalange especially when not everyone knows we are here. I did not get to my scan I was 180 miles away in a different hospital. I am set to go on the 13th of Feb and planning on NED for my big fat valentine!! Sorry to hear about the hair loss pain, the neuropathy, the transfusions and the memory crap. I remember them well, but time really takes most of it away or brings it back (which way is it!!?) Can you tell I need sleep?! God bless you all .........

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

PEGGY: I'm glad that you are home. We're gonna want to hear this whole sordid tale when you get past it, only if you want to share. ((((Peggy))))))

I had my bloodwork taken today and all my numbers were lousy, so I needed the blood transfusion. I only had to have 1 unit. The transfusion routine was no different than a chemo day, and I already feel better for it. If any of you need a transfusion as you get deeper into your chemo rounds, there's no need to be afraid of it. My chemo oncologist is on vacation this week, but I asked the P.A. to find out from him if it would be wise for me to plan on having bloodwork and a transfusion on my next scheduled chemo day, followed by my chemo the following day.

But I just can't guess at what today's bloodwork numbers mean, as far as how recovered I might be in 2 weeks when it is chemo time again. Have any of you ever had your blood tested at your LOW point in the chemo cycle? Today's blood transfusion was timed to help me get through the LOWEST point in this chemo round, but this is the 1st time I've ever had bloodwork drawn at this LOW point, so I have nothing to compare it to. I'll share my 'low point' pre-transfusion bloodwork numbers with all of you in case any of you can give me some idea how I'm doing. My WBC (white) was 2.22 (chemo safe range 4 - 10.8): RBC was 2.63 (safe 3.85 - 5.15); HGB (hemoglobin) was 8.6 (safe 12 - 14.5): HCT was 24.3 (safe 36 -44.5); RDW was 20 (safe 11.5 - 15.5); Platelets 126 (safe 150 - 400). This is the one they were most concerned about: ABS SEGS .73 (safe 1.8 - 7.7). I just don't know what these numbers mean. Thanks for any insight you may have.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

Hope all is better with you and your husband. Sorry your husband will have to go back to the hospital for surgery. I hope your scan comes back good on the 13th and NED will be your
Valentine. That would be the greatest Valentine. Linda thanks for posting my e-mail. I hope I can get this figured out. Hope you are feeling better. Did you get a blood transfusion? They usually make people feel better. Deanna sorry to hear about your hair coming out. I am not really looking forward to that part of it either. But I did get a wig and some hats to help prepare me for it. Theresa hope you are feeling better, too. I am on day 4 after chemo, and have not have the achy feeling yet. Maybe it is because my treatment finished so late in the day, it has not hit me yet. Marge hope your tiredness is getting better, too. I so appreciate all the tips you all have given me. I signed up for Heavenly Hats, and Look Good Feel Good Program. The American Cancer Society has been so helpful with resources.
A little more about me. I am 60 yrs old. We live in Illinois, but winter in Florida. So I will get my first three chemo treatments here in Florida and then return to Illinois for the radiation and 2nd round of chemo. We figured it was much nicer to recover from surgery in Florida rather than Illinois. And now with the chemo, this weather is much nicer. Thank you everyone for being there. Your encouragement and advice has been so helpful. HUGS to all of you.

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

Just had to offer my moral support to you, Deanna, with the rapidly impending hair loss. I know you've been dreading this since Day 1, but have probably prepared yourself for it. And you've been through so much since last fall when we started posting here, and now you have a different perspective. But even though this is small stuff in the BIG picture, I just have to give you a cyber hug because you're young and beautiful and in love, and this is your HAIR, dam* it!!! (((((((Deanna)))))))

deanna14
Posts: 738
Joined: Oct 2008

Thanks for understanding. I feel okay about it right now, except for the mess I am making everywhere. Now when I stand in front of the mirror with my bald head for the first time, I will probably shed a few tears. It is a small think in the big picture, but it is a huge thing in the daily fight. Mostly right now, I feel like I need a vaccuum sweeper attachment for my head. It itches, but I found a soak in the tub was comforting. I'm going to head to bed, can't stay awake.
Glad your transfusion went well. I'll write more tomorrow. I'll check out your labs when I'm more awake. I might be able to explain some of them for you.
Hugs of strength to all...

deanna14
Posts: 738
Joined: Oct 2008

Double posted

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Deanna, my heart goes out to you. Such an emotional roller coaster when your hair starts coming out. My head still has the buzzed look,I look like grandma GI Jane.I wear a soft gray cap around the house.My wig is really comfortable so I always wear it when I leave the house.It won't take long for you to find what works for you.
Marge, love your Army Mom picture, happy to hear you are feeling better.
Linda ,happy the transfusion went well for you and made you feel better.
Ro, happy to see your able to post now. Hope you don't get the achy bones side effect.
Peggy, hope your doing okay, know this is a rough time for your husband, daughter and yourself.Dancing with NED on the 13th will be a great Valentine for you.....

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

Here is some of the information I was given regarding blood counts. Hope it helps. About 7 - 14 days after receiving chemo your blood counts may begin to fall. NADIR is the word used to define the point in time when the blood counts are at their lowest. The timing and severity of the fall depends on : the chemo drugs and dosages, your general state of health, and your nutritional state.
WBC (white blood cells)or leukocytes main function is to fight infection. There are different types of WBCs the true infection fighter are the neutophils, also called segs or polys. They are also the most abudant type of white blood cell.
RBC (red blood cells) also called erythrocytes main function is to carry oxygen from the lungs to the body. Hemaglobin (hgb) is the main component of RBC. When hemaglobin is decreased you may look pale, feel overly tired and weak and become short of breath. A blood transfusion may be needed to increase the hemaglobin. Vitamins and iron supplements may make you feel better, but should only be taken with your doctor's advice. (Raisins are high in iron, and will also help with constipation).
Platelets, or thrombocytes are the smallest formed elements in the blood and are vital for blood clotting. A decrease in the amount of platelets in the blood due to destruction or inablility of the bone marrow to make them can lead to bleeding. After chemo you may notice that you bruise more easily, or a minor cut may take longer to stop bleeding. You may see tiny pin-like dots on your ankles, lower legs and arms. The red dots are called petichiea.
You may also notice you gums may bleed after you brush your teeth. Notify your doctor if you notice these things.
Linda you body will begin to produce more red blood cells, but the transfusion helps the RBCs from dropping lower due to the chemo. Hope this information is helpful and not scary. The important thing is to try to have the best nutrition you can have, with lots of protein. Stay away from sick people and take care of yourself,practice good handwashing, and resting when you need to.
Hope everyone is doing okay. Deanna I will experience your sadness of losing your hair, soon. Hope each day is a little better for you. Marge hope you are getting stronger each day. Peggy hopes things are settling down for you a little. Day 5 after chemo and still feeling good. Hugs to all.

shortmarge
Posts: 296
Joined: Nov 2008

http://www.chemocare.com/managing/low_blood_counts.asp

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

Thanks for the information on what my blood work means; I will visit the website Marge mentioned as soon as I tell you my news.

I read on another thread on this website that someone had contacted the webmaster, and the link that sends out the emails telling you someone has replied to your posting is broken, but they are working on it. So that's the story there.

I also just got an email reply this morning from Dana Haulotte of the American Cancer Society Cancer Survivors Network®. She emailed: "Thank you for contacting the Cancer Survivors Network (CSN). We do apologize for the delay in our response. Thank you for your interest in creating a new discussion board on the CSN. After speaking with our technical team we found that a new board can be created but we are unsure if the posting from the Gynecological Cancers discussion board can be moved. If it cannot be moved do you still want a new board created? Thank you for all you bring to the CSN community."

I replied that we still would love to have our own 'Uterine Cancer' Discussion Board, but hoped that they would leave up this original thread, even if it stayed under 'Gynecologic Cancer Other than Ovarian', so that it could be accessed by new UPSC sisters using their 'Search' mechanism. And we could make a point of occasionally adding a new post to this old thread explaining where to find us now, so that this thread stays moved up to the 1st page of that Discussion Board. It will be great to have our own new posts organized in threads on chemo and radiation and neuropathy and emotional support, etc., specific to our cancer type, as a better resource for newcomers that may not have the time to read through our super-long thread looking for something specific. I hope they do it.

How are all my UPSC sisters today? I am in my Nadir week, and largely housebound, hiding from germs and viruses, but it is freezing cold here anyway. I vowed to start daily mild exercise today (leg lifts, yoga) as I am tooooo sedentary for my own good. I feel so much better since my transfusion, a lot of it 'psychologically' better, as that breathlessness and pounding heart, although fairly mild, was SCARY. Now I don't feel so fragile. The sun is shining brightly on the snow outside, and I love sunshine! Be happy today, my friends.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

Marge , I checked out the site and it has so much information on all side effects, and good recommendations on how to help with the side effects. Thanks for sending it. I have a lot of information from my nursing career, but it is sure different when you are the person going through everything. It still amazes me all the current information you can find on the internet. We sure could not be checking things out at the library like the old days. I think like others have said I hav "chemo brain" due to the pre treatment steroids and taking the steroids 3 days after treatment. I feel I can think a little better today. I am on day 6 post chemo, and still no problems. That fear of the unknown sure plays havoc on one's mind too.
Linda I am glad you are feeling better. I like the new picture. I guess next week I will have my "new look", too. Continue to take care of yourself. Enjoy that sun and snow inside. Keep warm. Deanna hope you are adjusting to your new look also, and things are going well for you. Theresa hope you are doing okay. I am sure you have a harder time taking care of your daughter. My heart goes out to you. Peggy hope you and your husband are doing okay, too. HUGS to all.

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

RO: I was worried that we finally have you posting with us, and thaty as soon as you got comfortable with the process, we had this thread moved!! (Or did you post this before the move?? maybe I am celebrating too soon!) I didn't have the email addresses of all the UPSC sisters, but emailed as many of you as I could to give out new location on this website. We have now been granted our OWN Discussion Board, a new UTERINE CANCER listing in with the main listing of all the other Discussion Boards. http://csn.cancer.org/forum/189

So now, when you come into the website, and go onto the list of Discussion Boards, pass by the ‘Gynecologic Cancer other then Ovarian’ discussion board and scroll on down until you see ‘UTERINE CANCER.’ They moved our old thread here, and I suggested that everyone start there in our old thread, reading any posts that may be new to you. But instead of just hitting ‘REPLY’ to continue our chatting, if you want, feel free to create a new thread within our Board. This way we can have separate topics (chemo; radiation; side effects; various drug research, etc.) which will make it easier for new UPSC Sisters to SEARCH on just what they need to know that day, as opposed to reading our wonderful long rambling discussion of everything and anything. This should make our posting have less glitches since the individual threads won’t get so crazy-long.

If any of you have Teresa’s or Beav’s or any of our other UPSC Sister’s email addresses, please email them and give them the new address: http://csn.cancer.org/forum/189

I don’t want to lose anyone with the move!

deanna14
Posts: 738
Joined: Oct 2008

It's great to see uterine cancer listed now. It is a giant step in the right direction, I think. This is quickly becoming a peeve of mine... breast cancer, ovarian cancer... all other female cancers. I am finding out that uterine cancer is much more common than I would have guessed before I was diagnosed. What are other things we can do to push for more face time for uterine cancer? There definately needs to be better screening for uterine cancer. I actually read on the ACS website that women in my position (positive for, or suspected to be positive for Lynch Syndrome), should have routine ultrasounds. My brother had his colon cancer 6 years ago and I told all of my doctors my family history and still no one said anything about rountine ultrasound as I could be genetically predisposed to uterine cancer. How do we get the information out there?
Okay, I'll step off my soap box. Good job Linda on getting this new board!

deanna14
Posts: 738
Joined: Oct 2008

After that little rant, I forgot to ask if anyone else is having problems with their fingernails? Mine are very soft,hangnails and splitting, a couple down into the quick which is very uncomfortable. Would appreciate any ideas or suggestions? I have started using a cuticle oil, I have no idea if it will help. I thought maybe it would moisturize anyway.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

Check out the site Marge listed above chemocare/managing side effects/skin care. Nail changes is listed under there. I found I have some hangnails starting, too which is very unusual for me. I have very strong fingernails, so I don't know if I will need to keep them short. I have used cuticle oil, but also used a moisturizing lotion around the fingertips to keep the hangnails from going deeper. You are right it is painful. I have a friend that had fingernail and toenail problems due to chemo. I will e-mail her for her suggestions, too.

deanna14
Posts: 738
Joined: Oct 2008

Thanks Ro, I will check out the chemocare site.

california_artist's picture
california_artist
Posts: 860
Joined: Jan 2009

Hey,
Great job on the new bloggy thing. UPSC does tend to get lost in the shuffle.

Has anyone had any discussion with their doctors about hormone therapy. UPSC often is progesterone receptive and does respond to forms of progestin therapy, but neither of the oncologists I've seen have been willing to even test for progesterone receptors. My brother. at the same age as I was when diagnosed with my cancer, was diagnosed with prostate cancer, a very aggressive form, and was given hormone therapy when he asked, after his cancer returned a year later. The treatment brought his number down to zero, and he's been fine since, five years. So I was thinking and reading, and wondering due to the similarities about hormone therapy for me.
Ah, any ideas????
Love and kisses
Claudia
claudiaallen27@yahoo.com

deanna14
Posts: 738
Joined: Oct 2008

I am 39 and my gyn/onc and radiation onc both said the goal is for me to never take HRT.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

I have not been able to use the Uterine Cancer discussion board. It's the darndest thing! I click on the discussion board and I can click on all the other topics and they come up. I click on uterine cancer and it won't load, say's "OOPS! can't find the web page you are looking for". I've e-mailed CSN and AOL with my problem... each blames the other for the problem.
Hope everyone is doing well. Have you been losing your hair yet Ro? Deanna, I imagine yours is gone now. Takes awhile to get used to, but then you find a way to deal with it knowing it won't be forever.Linda, hope you get through your 5th chemo with no problems on the 16th. I will be having my 3rd on the 17th.

deanna14
Posts: 738
Joined: Oct 2008

I have a very...very thin layer of hair on top. I am starting to get used to it. It won't be gone forever! Had chemo # 2 yesterday and I have to say it is hitting me harder this time. This too will pass. Good with yours next week.
Take care and God bless.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

Glad to hear from you Theresa. Hope all is going well for you. If youput your e-mail address on the site, maybe one of us could e-mail you the site Linda e-mailed us to get started on the site. This is day 12 post chemo. I combed my hair this morning and the comb was full of hair. Pieces have been coming out through the day. I showered this afternoon, but was afraid to dry it with the hair dryer, so I let it dry naturally. My head is beginning to itch, so I guess more will fall out as the week goes on. Deanna hope you are feeling better today and don't have the munchies so bad. Linda hope you are feeling a little stronger and don't have that whirring in your head. Marge hope you get your CT scan results soon, and it is good news.

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

I can see in your photo that you've always had beautiful hair, so I know this is hard. I don't care who you are, or how prepared you are mentally, losing your hair is HARD. Big hugs, Ro. The bald head is your badge of courage; try to keep it in perspective. We all shed tears over this when it happens, and some mornings when I go in to wash up and see myself in the mirror, a few tears still squeek out. Other times I just have to laugh at how funny I look. (((Ro)))

deanna14
Posts: 738
Joined: Oct 2008

I so thought I was going to be prepared for it and I still cried. I have been forcing myself into social situations all weekend and the last couple of days. I think that has helped me, just hold my head up and not even acknowlege it. I'm gonna wear it like a medal, kinda like a purple heart or something. Sad to say... this has been one of the hardest things. When it first comes out, it makes it all so much more real. It makes the cancer more real and the chemo more real. However, each day that it is gone, it gets easier and it begins to feel like a symbol of the fight I'm/We are going to win!
Just remember, you are not alone in this!
Lots of hugs, prayers and blessings... it will be okay.

maylynne's picture
maylynne
Posts: 8
Joined: Feb 2009

Diagnosed in March 2008. Radical hysterectomy April 2008. Chemo 3 treatments, radiation 5 weeks.
1 brachy therapy treatment.
Stage 3a due to a few cells in the peritoneal cytology, otherwise barely a Stage 1a.
I will be having my first follow up in the next couple of weeks.

I have always been extremely healthy, so this diagnosis was quite surprising.

I had minimal side effects from chemo and the radiation. I am back to my normal energy levels. I just got back from 2 weeks in Puerto Vallarta.

It's great to have this site as this cancer is rare and I have only been able to find a couple of people who have told their stories awhile ago.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

So very glad to meet you. So sorry to have to meet you like this though. Puerto Vallarta sounds like a piece of heaven. I am in the middle of Mn. (and so very sick of winter.) Tell us more more more!! God bless you for joining us here. Peggy

maylynne's picture
maylynne
Posts: 8
Joined: Feb 2009

Thank you Peggy.
I will write more when I can, I still find it difficult think about it. I worry about every little ache and pain. My hair has grown back, still quite short. It came out more gray than before and very curly. I have aching calf muscles at night, this is probably from the chemo. All in all I am still here and doing well I feel. When first diagnosed I did not think I would be here now, so I live each day to the fullest.

With this supportive group I do not feel alone now, and hopefully I will be able to talk about it all.
Maylynne

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

It is a very difficult journey and as I have said in the past it is the most difficult journey of your life for your life. I was NED for many months before I would quit looking at other people with envy saying to myself why are they well and doing what ever they want to do while I am stuck with this crap.... then it dawned on me. I am done with cancer. I still have many many days when I feel a twinge or somethng new for pain and panic, but I have convinced myself that I have no more of a percentage of getting cancer than anyone else that I meet on the street. It took me awhile to feel that way... but now I do. It has helped me alot. Even if I did get cancer recurrences now I feel that I have been through it once and will now know how to make better decisions the second time. We are all here to help you get through what ever bothers you the most. Just ask!! We are all sisters now. God bless. Peggy

maylynne's picture
maylynne
Posts: 8
Joined: Feb 2009

Thank you Peggy.
You said it all, that is what goes through my mind.
I have to spend some time reading all the posts to get to know you all.
Maylynne

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

ARGH! Triple post. SORRY. I KNOW I should only click on SUBMIT once eben if it takes an eternity to actually DO anything. & yet I click again. (blush)

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

Sorry. It posted 3 times and I am EDITing out my duplicated messages. As long as I have the floor anyway (HA!), when you talk about peritoneal cytology, do you mean they found cancer cells on the 'washing'? And that alone can jump your diagnosis to Stage 3? I did not know that! They found microscopic cancer cells in 1 of the 25 lymph nodes they removed in my surgery and also found cells in the peritoneal cavity washing liquid, but I didn't know that could affect staging decisions. I am considered Stage III-c. You make me feel really good about my chances of being CURED. My CA-125 is now in the normal range and I've had 2 clear CT-scans, but I am still in the midst of treatment. When my treatment regime is over, I hope I can stop being afraid. Survivors like you and Peggy really give those of us in treatment justifiable hope.

maylynne's picture
maylynne
Posts: 8
Joined: Feb 2009

Yes that means the "washings". Positive washings can happen at surgery, when a few cancer cells escape, particularly with laproscopic surgery. Not sure if it happens at surgery whether it is different to it happening before. From what I have read, certain articles
claim that they are not sure about the positive cytology and how it affects the prognosis. It may just mean that the cancer is aggressive. My surgeon told me that I just had a few cells, and that is why I needed pelvic radiation.
There was a lot of discussion as to whether I really needed radiation as the cancer was in a polyp. I am glad they decided to do the radiation.

So from a stage 1a I was upped to a 3a.

Once you get through your treatments, you will be able to be a lot more positive. The protocol that was used for my treatment is determined by the Canadian Cancer society.(British Columbia) They are supposed to be one of the best Cancer agencies. Time will tell.
I have been reading some of your posts, and you are a brave lady, keep it up. The sex thing is also ok, once you are healed after radiation you use a dilator. I was told for 1 year. I have had no problems so far. The first time one is a little nervous, as you feel rather fragile.
Also eat a low fibre diet during radiation, it helps the bowels. Talk to you soon. M

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

Sorry to meet under these circumstances, but so glad that you have found us. If you read all of this long long thread, you'll learn more about UPSC as it is TODAY (not all that old scary stuff you come upon online with Google searching!) than any book. We don't use this long long thread much because it loads so S-L-O-W-L-Y due to the number of posts. So feel free to start a new thread if you have a particular question, or post under any of the shorter threads if you are frustrated by the slow loading of this post.

Big hugs to a new UPSC Sister ((((Maylynne)))))

DaughterNo1's picture
DaughterNo1
Posts: 14
Joined: Apr 2009

My 76 year old mother has UPSC and I would like to share her story so others might be encouraged. She lives in Central Calif. in a city of about 120,000 people. In March 2008 mom had a hysterectomy and was diagnosed with uterine cancer. Her oncologist said she had "garden variety" uterine cancer. He did NOT tell us she had UPSC (I don't think he even knew). The cancer was limited to the pelvic area. She had 5 weeks of radiation, 5 days a week,chemo once a week and brachytherapy. (She never lost her hair and the side effects were blessedly minimal) A CT scan showed a small tumor on her liver which was removed completely by the amazing and wonderful Dr. Nicholas Nissen at Cedars Sinai Hospital in Los Angeles. After she healed from that surgery, she had a PET scan that showed the previous pelvic cancer "spots" were gone but now there were 2 small spots near the aortic lymph nodes. Mom had a second 5 week course of radiation and chemo. Before this course was done we had decided to seek a 2nd opinion because her oncologist was so un-enthusiastic and indifferent, did not offer a lot of information and spent very little time with her. He met with her in December to discuss the final PET scan and said with the report looked good and she should come back in August for another PET scan. We asked why she had to wait so long for a follow up and he said her insurance wouldn't cover another PET scan so soon. We didn't feel 100% relieved because the report stated that there were "residual" spots that might be inflammation; the doc said those spots MIGHT go away in a few weeks.

On 4/1/09, we met with Dr. Beth Karlan, a women's cancer specialist at Cedars Sinai, had a new PET scan (insurance OK'd - no problem) and found out that my mom was cancer free and in remission! She will have another PET scan at Cedars in July.

Last week, mom felt tired and had a little back pain. Her gen. practitioner gave her a blood test and told her she was having a heart attack! She was immediately admitted to the local hospital and this past Monday she had heart surgery: a quadruple bypass. She is doing well and will be released in about 4 days. I have since learned that chemo and radiation can damage heart valves and doctors should check for heart damage during or after cancer treatment. My mother is slim, eats healthy and is in great shape for her age but her family has a history of heart disease. She had complained to her onocologist several times about feeling a pressure in her chest and shortness of breath - but her oncologist and radiation oncologist both told her it was just due to the radiation.

Sorry for this long post, I am finally ready to make 2 points:
First - Remission is not impossible with UPSC - Dr. Karlan has several patients who have been in remission for 15 years or more.
Second - always get a 2nd opinion, and ALWAYS go to a gynecological oncologist for any type of womens cancer.

Best wishes and good luck to everyone!

deanna14
Posts: 738
Joined: Oct 2008

Thanks so much for sharing your mother's story. It is very encouraging to hear about her remission from UPSC. Thank the Lord that her heart symptoms were caught and treated and that she is doing well.

God Bless you and your mother!

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

I too appreciate you sharing you Mother's story with us. It is wonderful she has been in remission for 15 years. That sure gives us a lot of hope. I hope she recovers soon from her by-pass surgery.

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.

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

What a blessing you are to have made it a point to share that encouraging and hopeful story with us! THANK YOU! Each of us with UPSC will sleep a little easier with the reinforcement to our determination and the hope that you have bolstered up. BIG HUGS!!

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

What a blessing you are to have made it a point to share that encouraging and hopeful story with us! THANK YOU! Each of us with UPSC will sleep a little easier with the reinforcement to our determination and the hope that you have bolstered up. BIG HUGS!!

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

What a blessing you are to have made it a point to share that encouraging and hopeful story with us! THANK YOU! Each of us with UPSC will sleep a little easier with the reinforcement to our determination and the hope that you have bolstered up. BIG HUGS!!

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

There are so many new women posting with UPSC that I wanted to move this old thread up to page 1, and encourage those with the time to sit down and read this from start to finish, like a book about having UPSC. I think you will find it well worth your time, and the best resource on the web for 'real time' information and experience. ENJOY!

livealot's picture
livealot
Posts: 19
Joined: Jan 2010

I just found this site this morning and then this afternoon I found your postings. it is so wonderful to see these posts from the women with the same dx as me- UPSC- stage 4. I didn't have time to read through the entire list of postings but I would love to know how you are doing today. hope all is well and would love to "talk" to you.
elizabeth

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