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Papillary serous sarcoma patients

2

Comments

  • joannewtta
    joannewtta Member Posts: 43
    Kvdyson said:

    I'm with you, Soup

    I'm with you, Soup. I have 3 more rounds to go and plan on keeping it for at least a year once that's finished. Mine has been feeling tender recently but worked fine during the flush last week so I'm just going to keep my mouth shut and deal with it.

    I was UPSC Stage 3 3c. My Dr

    I was UPSC Stage 3 3c. My Dr wanted me to keep in in for one year post treatment. Then out it cam in Feb 2014. Two years NED now.

  • EZLiving66
    EZLiving66 Member Posts: 1,476 **
    Editgrl said:

    Keeping mine

    I'm keeping mine in for at least a couple of years.  While I'm not fond of the large bump in my chest, which is quite prevalent since I am so tiny, I am realistic about the chances of recurrence.  It doesn't bother me much, but there are a lot of scoop neck tops in my wardrobe that I am probably going to pass on this summer! 

    Chris

     

    Since I had my port installed

    Since I had my port installed the end of October I've been wearing tank tops under my regular shirts but I wear them backwards.  Now that I have that buck-ugly scar I figure I'm going to wear them under my all summer tops too.  I have about 30 tank tops in just about every color so I am ready to hide that scar!!!

    Love,

    Eldri

  • Gardena
    Gardena Member Posts: 102

    I was UPSC Stage 3 3c. My Dr

    I was UPSC Stage 3 3c. My Dr wanted me to keep in in for one year post treatment. Then out it cam in Feb 2014. Two years NED now.

    Port removal recommendation

    I spoke w rad onco yesterday and he told me the earliest he would recommend port removal for me was 3 months after frontline treatment is done. Told me at 3 months I will have a CT / PET scan and that will be my new baseline for future treatment. Didn't really have an opinion one way or another after 3 months... made it sound like my health will dictate removal. 

  • Gardena
    Gardena Member Posts: 102

    I was UPSC Stage 3 3c. My Dr

    I was UPSC Stage 3 3c. My Dr wanted me to keep in in for one year post treatment. Then out it cam in Feb 2014. Two years NED now.

    2 years ned

    Is Awesome!! Thank you for sticking around and spreading hope to all us still working our way through this journey to ned.

  • PHK1952
    PHK1952 Member Posts: 10
    ncg007 said:

    Pamela

    Pamela...Sorry you've had to join us here.  I'll be 55 next month and was diagnosed with a 50/50 mix of endometriod and papillary serous carcinoma, stage IIIC1, grade 3.  I had surgery Aug 21st and just completed treatment Feb 22nd and after 8 long months I will return to work on April 18th.  I had a scan prior to and after surgery and dr will not do another unless there is reason to.  After surgery dr put me on 8 week leave, I would have been ready to return after 4 weeks but unfortunately I started chemoradiation 5 weeks after surgery and remained off work for the duration.  If I did not have chemo in conjunction with radiation, I probably would have worked during as the radiation itself was not bad at all for me.  However everyones experience is different, there are many woman on this board that continued to work.  My full treatment consisted of 2 rounds of chemo(Cisplatin) along with 28 external radiation treatments followed by 4 more rounds of chemo(carboplatin/Paclitaxel).  Get through your surgery and hopefully you will find no further treatment needed and if you do, you've made the right decision to get a second opinion, I got three.  Keep asking questions, we are all here to help.  Wishing you the best.

    Nancy

    Edit note:  i just noticed your subject vs post conflict, do you have sarcoma or carcinoma?

    Thank you NCG!

    I have carcinoma. upsc?

    Did you get a port?

    My surgery is scheduled for next Friday and I am trying to put my house in order.

    I am all over the map.

    Could you not wear anything binding your tummy post surgery? I am a jeans gal and may need to buy some dresses or long soft tees?

    Bests of luck on returning to work. You are a very strong person and generous. Thank you for your help!

     

  • ncg007
    ncg007 Member Posts: 136
    PHK1952 said:

    Thank you NCG!

    I have carcinoma. upsc?

    Did you get a port?

    My surgery is scheduled for next Friday and I am trying to put my house in order.

    I am all over the map.

    Could you not wear anything binding your tummy post surgery? I am a jeans gal and may need to buy some dresses or long soft tees?

    Bests of luck on returning to work. You are a very strong person and generous. Thank you for your help!

     

    PHK Surgery

    PHK,  I did get a port and procedure was no difficulty, Onc says it has to remain for a year.  I am a jeans gal too and found that my abdomen was quite swollen for a few weeks.  I wore yoga pants until able to button those jeans again, which was fine because I was mostly home recouperating.  Ask discharge nurse for Abdomen Compression belt, it will help with pain and swelling.  Wishing you all the best with surgery and a speedy recovery.

    Nancy

  • Hopeful162
    Hopeful162 Member Posts: 82
    Gardena said:

    Ladies???

    Is your port staying or going? Inquiring minds want to know! :-)

    I see rad onco tomorrow, I'll ask him and report back his opinion. -G

     

     

    Port removal

    My two cents. About six weeks after I finished chemo (for UPSC, Stage 1), my port was accessed one last time for a new baseline CT scan for future comparison. My gyn-onc then said it was up to me if I wanted the port out, and I did, so it was removed. I am on the usual surveillance protocol, every three months for two years, every six months for three more years, so I am just hopeful that nothing more will turn up! I really had no problems with my port, just a few days of pain on insertion and a slight bump on my chest. I am glad I made the original decision to have one placed as it made chemo days that much easier.

    I am currently 15 months NED and feeling strong!

    Martha

  • Editgrl
    Editgrl Member Posts: 903

    Since I had my port installed

    Since I had my port installed the end of October I've been wearing tank tops under my regular shirts but I wear them backwards.  Now that I have that buck-ugly scar I figure I'm going to wear them under my all summer tops too.  I have about 30 tank tops in just about every color so I am ready to hide that scar!!!

    Love,

    Eldri

    Good idea

    Good idea about the tank tops, Eldri.  I have been layering during the cooler months with long and short-sleeved T's, but for some reason, had not thought about the tank tops.  I may be able to wear those low-cut tops after all!  Then I won't have to answer questions about my third breast.

    Chris

  • PHK1952
    PHK1952 Member Posts: 10
    ncg007 said:

    PHK Surgery

    PHK,  I did get a port and procedure was no difficulty, Onc says it has to remain for a year.  I am a jeans gal too and found that my abdomen was quite swollen for a few weeks.  I wore yoga pants until able to button those jeans again, which was fine because I was mostly home recouperating.  Ask discharge nurse for Abdomen Compression belt, it will help with pain and swelling.  Wishing you all the best with surgery and a speedy recovery.

    Nancy

    Thank you NCG❤️

    I will ask for compression belt. I am a PJ gal too. Most of them have huge waists and elastic and drawstrings. I really don't care if I hang out in them, even for leaving the hospital.

    What do you do about post-op bleeding? Don't you have to wear some kind of panty or belt. I have been bleeding for awhile so I have every panti liner made.

    Wishing the best in your recovery, too. This support group is wonderful.

     With gratitude,

     Pamela

    Thx for the info on the port. Sounds like a very good thing to have.

     

     

     

  • Lou Ann M
    Lou Ann M Member Posts: 996
    PHK1952 said:

    Thank you NCG❤️

    I will ask for compression belt. I am a PJ gal too. Most of them have huge waists and elastic and drawstrings. I really don't care if I hang out in them, even for leaving the hospital.

    What do you do about post-op bleeding? Don't you have to wear some kind of panty or belt. I have been bleeding for awhile so I have every panti liner made.

    Wishing the best in your recovery, too. This support group is wonderful.

     With gratitude,

     Pamela

    Thx for the info on the port. Sounds like a very good thing to have.

     

     

     

     I didn't have any bleeding

     I didn't have any bleeding at all after surgery. I love the fleece lounge pants. The are soft and comfy and loose fitting.  I wore them for the first four weeks until I went back to teaching and then I switched to slacks that had a little stretch to them.  The pillows at my hospital were a little on the terrible side and I wished I had brought a good one along.  Hoping everything goes well for you.  Hugs and prayers, Lou Ann

  • pinky104
    pinky104 Member Posts: 574
    Port Removal

    I haven't been on here for a little while, so I'm just seeing the port comments now.  I had stage IVb UPSC with surgery in May, 2010 and chemo thru Sept., 2010.  I am NED and have been ever since surgery and chemo.  I kept my port in for a whole three years, worrying that with stage IV, my cancer was likelky to be found somewhere else.  When it hadn't come back in 3 years, I finglly got the port removed.  The radiologists who removed it commented that they wished more people would keep theirs in as long as I did.  It was annoying to have to keep having it flushed during those 3 years, but I knew I didn't want to face being in the 63 degree temperature of the Interventional Radiology suite environment again if my cancer were to come back.  I couldn't get warm no matter how many heated blankets they put on me.  I dreaded having it removed in the same place, but they actually removed it in their office.

  • bluehyacinth
    bluehyacinth Member Posts: 50
    Interesting how differently

    Interesting how differently we all have been treated. Granted we obviosly don't have the same grade and stage or presentation for that matter but still. I am Stage 3CII grade 3 UPSC, mixed but as my surgeon said UPSC since as others have said serous trumps. I started out with 28 rads with 5 concurrent Cisplatin, had to skip the last Cisplatin then 4 rounds of Carboplatin and Liposomal Doxorubicin (Dox not Taxol because I am prone to neuropathy due to another chronic condition). I had surgery in September 2015. No port here doc suggested IV which worked fine.

  • ksdehn30
    ksdehn30 Member Posts: 32
    pinky104 said:

    Port Removal

    I haven't been on here for a little while, so I'm just seeing the port comments now.  I had stage IVb UPSC with surgery in May, 2010 and chemo thru Sept., 2010.  I am NED and have been ever since surgery and chemo.  I kept my port in for a whole three years, worrying that with stage IV, my cancer was likelky to be found somewhere else.  When it hadn't come back in 3 years, I finglly got the port removed.  The radiologists who removed it commented that they wished more people would keep theirs in as long as I did.  It was annoying to have to keep having it flushed during those 3 years, but I knew I didn't want to face being in the 63 degree temperature of the Interventional Radiology suite environment again if my cancer were to come back.  I couldn't get warm no matter how many heated blankets they put on me.  I dreaded having it removed in the same place, but they actually removed it in their office.

    Pinky

    wow. Pinky you are someone who keeps my hope alive. You may have said this but where had the cancer spread that you were a stage 4?  How wonderful to be NED for so long. So good to hear!!!!!!

  • pinky104
    pinky104 Member Posts: 574
    ksdehn30 said:

    Pinky

    wow. Pinky you are someone who keeps my hope alive. You may have said this but where had the cancer spread that you were a stage 4?  How wonderful to be NED for so long. So good to hear!!!!!!

    Location of cancer

    My cancer spread from the uterus to both ovaries, the omentum, and the small intestine.  My gyn/onc said it was stage IVb because it had "gone out of the pelvis."  My lymph nodes, amazingly, were clear.  I do remember having unexplained swelling in the lymph nodes in my armpits a few years before diagnosis.  I had a physical coming up a short time later and mentioned it to my family doctor.  He was intrigued and examined me, but the swelling had gone away by the time I saw him.  At that time, he was doing my pap smears, and he had difficulty finding my cervix, although it turned out he had found it from the cells that were mentioned on the results.  I have since wondered if he had troubles because I had a "cake-like" cancer formation in my omentum that was pushing my cervix out of position.  I always had a retroverted uterus, anyway.  I went to a gynecologist again eventually, and even he didn't find my cancer for over a year.  I didn't start bleeding until a couple of months before I was diagnosed, so I had to have already been stage IV by then.  My mother had been diagnosed with celiac disease, and I suspected that was causing my problems (diarrhea before work every day and sometimes at work).  I got tested twice for that but came up negative both times.  I had also been diagnosed with irritable bowel years before, so the diarrhea could have been related to that. I'd had cervical polyps that bled about 6 times and had them removed and found to be benign every time.  I also had a benign endometrial polyp 10 years before diagnosis, which I also had removed.  I was assured by my gynecologist that the latest polyp he found when he did an ultrasound on me for bleeding would also be benign, but it wasn't.  He did a D + C to remove it and found UPSC.  Surprise!  I had 40 people coming over for my step-daughter's baby shower that weekend, and I was in the middle of doing a ton of housework when I got the "come right in today call."  Not what I wanted to hear.  It sure changed my priorities!

  • PHK1952
    PHK1952 Member Posts: 10
    Thank you for all of your support and advice

    i just came home from MGH, and my surgery. The compression belt did wonders. All the usual stuff occurred: referred pain from gas, and very tender belly. I am so grateful to have found this group. Thank you all!

    won't get results for 10 days. As many of you suggested. For now, just being home feels terrific.

     Y our many stories of strength, courage,and positivity have been such a gift to me. thank you.❤️

  • Kvdyson
    Kvdyson Member Posts: 789
    PHK1952 said:

    Thank you for all of your support and advice

    i just came home from MGH, and my surgery. The compression belt did wonders. All the usual stuff occurred: referred pain from gas, and very tender belly. I am so grateful to have found this group. Thank you all!

    won't get results for 10 days. As many of you suggested. For now, just being home feels terrific.

     Y our many stories of strength, courage,and positivity have been such a gift to me. thank you.❤️

    So glad you are home

    So glad to hear that you are home and recuperating. Keep moving but don't push too much. Even just a few steps a day will make a world of difference in the near future. Wishing you a quick recovery, Kim

  • Editgrl
    Editgrl Member Posts: 903
    PHK1952 said:

    Thank you for all of your support and advice

    i just came home from MGH, and my surgery. The compression belt did wonders. All the usual stuff occurred: referred pain from gas, and very tender belly. I am so grateful to have found this group. Thank you all!

    won't get results for 10 days. As many of you suggested. For now, just being home feels terrific.

     Y our many stories of strength, courage,and positivity have been such a gift to me. thank you.❤️

    Glad you are back home!

     

    Sounds like everything went smoothly and now you can concentrate on healing.

    Don't do too much too soon and allow your body to rest.

    Chris

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    Editgrl said:

    Glad you are back home!

     

    Sounds like everything went smoothly and now you can concentrate on healing.

    Don't do too much too soon and allow your body to rest.

    Chris

    I'm glad your surgery went

    I'm glad your surgery went well. As others have said.... rest.... but make sure you walk as often as possible. This will help a lot with the gas and will help you avoid blood clots too.  Make sure you get in front of constipation too. You sure don't want to have to push anything!  Miralax and stool softeners will be a good friend to you. :-)

    Love and Hugs,

    Cindi

  • ksdehn30
    ksdehn30 Member Posts: 32
    pinky104 said:

    Location of cancer

    My cancer spread from the uterus to both ovaries, the omentum, and the small intestine.  My gyn/onc said it was stage IVb because it had "gone out of the pelvis."  My lymph nodes, amazingly, were clear.  I do remember having unexplained swelling in the lymph nodes in my armpits a few years before diagnosis.  I had a physical coming up a short time later and mentioned it to my family doctor.  He was intrigued and examined me, but the swelling had gone away by the time I saw him.  At that time, he was doing my pap smears, and he had difficulty finding my cervix, although it turned out he had found it from the cells that were mentioned on the results.  I have since wondered if he had troubles because I had a "cake-like" cancer formation in my omentum that was pushing my cervix out of position.  I always had a retroverted uterus, anyway.  I went to a gynecologist again eventually, and even he didn't find my cancer for over a year.  I didn't start bleeding until a couple of months before I was diagnosed, so I had to have already been stage IV by then.  My mother had been diagnosed with celiac disease, and I suspected that was causing my problems (diarrhea before work every day and sometimes at work).  I got tested twice for that but came up negative both times.  I had also been diagnosed with irritable bowel years before, so the diarrhea could have been related to that. I'd had cervical polyps that bled about 6 times and had them removed and found to be benign every time.  I also had a benign endometrial polyp 10 years before diagnosis, which I also had removed.  I was assured by my gynecologist that the latest polyp he found when he did an ultrasound on me for bleeding would also be benign, but it wasn't.  He did a D + C to remove it and found UPSC.  Surprise!  I had 40 people coming over for my step-daughter's baby shower that weekend, and I was in the middle of doing a ton of housework when I got the "come right in today call."  Not what I wanted to hear.  It sure changed my priorities!

    Thank you pinky

    very inspiring you are. So no spread to lungs at all?  how much chemo did you do?  What age were you at diagnosis?  How often are you scanned?  I sure hope my moM is like you someday. Uspc. Surgery April 18  And lung biopsy on Tuesday for nodules seen on ct scan. She is 70 and a two time breast cancer patient. Most resilient person I know. 

  • BabyCoach
    BabyCoach Member Posts: 95
    Yea! 'It's true: There is NO PLACE like home!

    I'm just a few days ahead of you - still walking gingerly. But definitely walking. I echo the stool softeners recommendation. I even had to rely on one round of a laxative. Just today feeling as if the plumbing is back in order. 

    Trying to control what I can and not obsess about the path results. You do the same!

     

    Mary Ann

  • pinky104
    pinky104 Member Posts: 574
    PHK 1952

    I was 61 at diagnosis.  I had no spread to the lungs.  I expected to get breast cancer because my maternal grandmother had it in both breasts and my mother had it twice in the same breast, in different spots, 10 years apart.  My father also had cancer, prostate cancer.  All were "cured" of their cancers and died from other things.  My treatment was surgery and 6 rounds of chemo (carboplatin and taxol, 3 weeks apart).  I skipped the Neulasta shot because my little brother had died of a heart attack the week before, and Neulasta carried a risk of that.  I can't recall the exact time period for my scans.  It seems like I had two or three in the first two years, then they let me stop.  When I got abdominal pain at around 4 years out, my family doctor's office ordered a CT scan and a mass was found in my paracolic gutter, which was not where my pain was.  I followed it up a week later with a PET scan, which showed the same mass.  I scheduled an appointment with my gyn/onc, and he told me he wasn't sure what the mass was.  His nurse told me it might just be a fluid collection from having had lymph nodes removed.  My gyn/onc decided to take a "wait and see" attitude, and I had two more CT scans, 3 months and 6 months after the first appointment.  At the six month appointment, he told me he didn't think it was cancer as it hadn't grown, but he wanted to do one more scan at a year out to make sure.  After that scan, he told me the mass had shrunk a little. It was only a very tiny amount smaller, but it seemed to have rearranged its shape a bit.  Now, I'm down to seeing him yearly, and I'm due to go back in June.

    I asked if I could have genetic testing at one point since there were so many cancers in my family.  I had heard one of the BRCA genes could cause uterine cancer.  My gyn/onc agreed to the testing, but my insurance denied it a day later, after my blood was already drawn.  They did, however, approve a different test to see if Lynch Syndrome genes ran in the family.  I don't know why they approved that one and not the other, because nobody in the family had anything like that.  The results of that were negative, of course. 

     

     

  • cheerful
    cheerful Member Posts: 261
    ncg007 said:

    Congratulations Jane

    Congratulations Jane on achieving 5 years! 

    Thanks for responding and your good wishes!

    Cheerful

  • Peggylee
    Peggylee Member Posts: 13
    edited July 2016 #54
    PHK1952 said:

    Thank you❤️

    Thank you!❤️

    surgery july 6, 2016

    Sorry to say i'm a new member of this club.   according to my CT scan everything is clear I have a dime-sized tumor in the uterus.  I was diagnosed Papillary Serous Carcinoma grade 3 ....4 weeks ago.   Worried things have changed since then being it's fast growing.  Complete hysterectomy, removal of all lymph nodes (which  were clear)  I am debating if i should have them removed due to side effects.  Don't know if i'll do chemo etc as i'm sure they will want me to.  I can't believe  this is happening, I look in the mirror, look the same, feel fine.

     

  • brissance
    brissance Member Posts: 192
    edited July 2016 #55
    Peggylee said:

    surgery july 6, 2016

    Sorry to say i'm a new member of this club.   according to my CT scan everything is clear I have a dime-sized tumor in the uterus.  I was diagnosed Papillary Serous Carcinoma grade 3 ....4 weeks ago.   Worried things have changed since then being it's fast growing.  Complete hysterectomy, removal of all lymph nodes (which  were clear)  I am debating if i should have them removed due to side effects.  Don't know if i'll do chemo etc as i'm sure they will want me to.  I can't believe  this is happening, I look in the mirror, look the same, feel fine.

     

    Stay Strong

    Ahhhh Peggy, I am so sorry.  Scary crap you are facing.  Each one of know your fear.  The way you deal with the fear and your disease now is crucial.  

    I too, Have Papillary Serous Carcinoma (UPSC)..  I had a 4 cm tumor and everything else was clear but had a positive wash and had LVI.  I didn't have difficulty w/ my decision, tho.  After reading the stats on UPSC I opted for chemo and radiation, the full monte.  I want to destroy the killer inside.  Each of us are different. I don't know your health status.   I was healthy and knew in the beginning I had a darn good chance of being healthy enough to deal w/ potential side effects.  My biggest problem has been losing my hair and that is really not a big thing in the overall game plan for me.  

    I know I am lucky.  I am just giving you my thoughts as I am dealing with the same issue.  In 5 years I may be sorry because I chose as I did but I made my choice after study and getting information on my disease.  Just make an informed decision.. learn the facts.. lots of info on this site. most issues you will face one of these great ladies on this site has faced before and will share their info with you.  I also took my pathology report and scoured the internet for any medicial studies on my results.

    Give yourself some time and find that special strength that you have, your inner warrior princess to fight the big C...  You will do the right thing.. at least for you.  All of us here are on your side and we give you any info or support we can and you need.     

    Prayers are going your way.  Patty

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,927 **
    Peggylee said:

    surgery july 6, 2016

    Sorry to say i'm a new member of this club.   according to my CT scan everything is clear I have a dime-sized tumor in the uterus.  I was diagnosed Papillary Serous Carcinoma grade 3 ....4 weeks ago.   Worried things have changed since then being it's fast growing.  Complete hysterectomy, removal of all lymph nodes (which  were clear)  I am debating if i should have them removed due to side effects.  Don't know if i'll do chemo etc as i'm sure they will want me to.  I can't believe  this is happening, I look in the mirror, look the same, feel fine.

     

    Peggylee, I see you just

    Peggylee, I see you just posted for the first time, so I hope you come back to the site again.  You might want to ask about the lymph nodes and get some definition on how many they are taking.  Hopefully your surgeon is a gynecologic oncologist as he/she will know what they are looking at when they get in there.  If you have a chance to have someone with you when you speak to the doctor or the nurse, it helps that to have a second set of ears as you are trying to wrap your mind around this.  Uterine Papillary Serous Carcinoma (UPSC) is agressive, but not so much so that if you want a second opinion you do have time for that. 

    I hear your "I look in the mirror, look the same, feel fine".  But it sounds like they caught this early which, believe it, is great.  Try to take a breath and you have time for a second opinion.  

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    Peggylee said:

    surgery july 6, 2016

    Sorry to say i'm a new member of this club.   according to my CT scan everything is clear I have a dime-sized tumor in the uterus.  I was diagnosed Papillary Serous Carcinoma grade 3 ....4 weeks ago.   Worried things have changed since then being it's fast growing.  Complete hysterectomy, removal of all lymph nodes (which  were clear)  I am debating if i should have them removed due to side effects.  Don't know if i'll do chemo etc as i'm sure they will want me to.  I can't believe  this is happening, I look in the mirror, look the same, feel fine.

     

    Peggylee, So sorry that you

    Peggylee, So sorry that you are having to deal with the C beast. You have come to the right place for support and help with any questions.

    I don't believe your doctor will remove all lymph nodes. But they generally take enough out for testing to ensure clean margins or determine if there has been a spread in the lymph system. It is important for them to get enough samples all around to know what your stage is. I hope you reconsider your position on this.  While UPSC is a fast growing cancer it generally isn't lightening speed fast. I was diagnosed in May and didn't have my surgery until Mid-July.

    Like others - many of the other ladies here.... I made my decision to do everything recommended by my doctors to fight this ugly cancer. I am just over 6 months out from chemo and brachytherapy (vaginal radiation) and am starting to get close to normal. I'm not going to tell you that it was easy because it isn't. I will tell you that I made the right decision for myself. I am able to wake up every day happy and healthy without feeling like I have a huge threat hanging over my head.

    The beginning of this is the hardest. You are hit with so much information and the shock of cancer that it is a bit overwhelming. It does get easier once you know what you are dealing with. You will put your battle plan in place and march forward.

    There is a lot of information on this board. Please take the time to read the posts. I think you will find the best information here and gain a sense of calm just by knowing others have been through it and are still here to talk about it. If you have questions about chemo, there is a thread titled 'Ladies going through chemo...' that may help calm your fear about it (or not!). Several documented their chemo journey as they were going through it.

    Please come back with any and all questions. We are all here to help each other.

    Let us know how you are doing.

    Love and Hugs,

    Cindi

  • Peggylee
    Peggylee Member Posts: 13

    Peggylee, I see you just

    Peggylee, I see you just posted for the first time, so I hope you come back to the site again.  You might want to ask about the lymph nodes and get some definition on how many they are taking.  Hopefully your surgeon is a gynecologic oncologist as he/she will know what they are looking at when they get in there.  If you have a chance to have someone with you when you speak to the doctor or the nurse, it helps that to have a second set of ears as you are trying to wrap your mind around this.  Uterine Papillary Serous Carcinoma (UPSC) is agressive, but not so much so that if you want a second opinion you do have time for that. 

    I hear your "I look in the mirror, look the same, feel fine".  But it sounds like they caught this early which, believe it, is great.  Try to take a breath and you have time for a second opinion.  

    lymph node removal

    This is what i was told....  removal of the uterus, cervix, both ovaries and tubes omentum all visible cancer, removal of lymph nodes In pelvis and par aortic. Thank you all, for responding.  Closer to surgrery more i'm depressed

  • Peggylee
    Peggylee Member Posts: 13

    Peggylee, I see you just

    Peggylee, I see you just posted for the first time, so I hope you come back to the site again.  You might want to ask about the lymph nodes and get some definition on how many they are taking.  Hopefully your surgeon is a gynecologic oncologist as he/she will know what they are looking at when they get in there.  If you have a chance to have someone with you when you speak to the doctor or the nurse, it helps that to have a second set of ears as you are trying to wrap your mind around this.  Uterine Papillary Serous Carcinoma (UPSC) is agressive, but not so much so that if you want a second opinion you do have time for that. 

    I hear your "I look in the mirror, look the same, feel fine".  But it sounds like they caught this early which, believe it, is great.  Try to take a breath and you have time for a second opinion.  

    won't meet surgeon

    Yes the surgeon is gynecologist oncologist. My first consultation was with his partner and after he examined me he said he wasn't going to do the surgery his partner was. I may  meet him, But,  I'll be under sedation at the time.  Guess he thought he was funny...not.   I Spoke with an advocacy nurse helpline about a second opinion and she said they would do the same Procedure. the gynecologist will remove everything and the oncologist surgeon will do lymph node removal

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,927 **
    Peggylee said:

    lymph node removal

    This is what i was told....  removal of the uterus, cervix, both ovaries and tubes omentum all visible cancer, removal of lymph nodes In pelvis and par aortic. Thank you all, for responding.  Closer to surgrery more i'm depressed

    Peggylee, when I met after

    Peggylee, when I met after surgery with one of the doctors in the practice - not my surgeon - she said, "you had a hysterectomty plus" because he took so many lymph nodes.  This is all very overwhelming, I remember that feeling, and there is nothing I can say to take away that feeling.  I promise you this, this is one step at a time and you are going to amaze yourself.  You are not alone as we are here for you.  We have been through this and you can ask us anything.

  • Editgrl
    Editgrl Member Posts: 903
    Peggylee said:

    won't meet surgeon

    Yes the surgeon is gynecologist oncologist. My first consultation was with his partner and after he examined me he said he wasn't going to do the surgery his partner was. I may  meet him, But,  I'll be under sedation at the time.  Guess he thought he was funny...not.   I Spoke with an advocacy nurse helpline about a second opinion and she said they would do the same Procedure. the gynecologist will remove everything and the oncologist surgeon will do lymph node removal

    Peggylee

    I'm so sorry that you are having to deal with this, but know that you are not alone.  As others have said, this is the scariest time when everything is just getting started and there is so much that is yet unknown.  Before surgery, I asked my surgeon how many lymph nodes he would be taking, and he told me that everyone was different and he wouldn't know until he got in there.  He ended up taking 22, 4 of which were positive.  

    I know in my case, when I talked to my ob/gyn right after diagnosis and as we set up my pre-op appointment, I asked if I would be meeting with the gyn/onc prior to surgery.  She initially said I would meet him the day of surgery as well.  When I expressed a desire to meet with him beforehand, she arranged to have him meet with me during my pre-op appointment with her, ten days prior to surgery.  But I did get the impression that at least with my situation (an HMO), it wasn't unusual not to meet the gyn/onc before surgery.

    The surgery and recovery turned out not to be that bad.  Our bodies are remarkably resilient. Once you get all of the pathology back after surgery, then you and your gyn/onc and his team will come up with a plan.  Once that is in place, you will be surprised at how much better you feel.  I know right now it's still a shock and I understand that unreal feeling of looking in the mirror and feeling great, while knowing you have this serious disease.  

    Please try to breathe right now.  Enjoy the holiday with family and/or friends, and try to put it out of your mind for at least a while, easier said than done I know.   But the more you can hold on to your "normal" routine while awaiting surgery, the better you will feel.  And if you need to vent, scream, rage, please know that we are all here for you and we understand.  

    Chris

     

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