Papillary serous sarcoma patients

13

Comments

  • pinky104
    pinky104 Member Posts: 574 Member
    #42
    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: 54 Member
    #43
    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
    #44
    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 Member
    #45
    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
    #46
    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: 790 Member
    #47
    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 Member
    #48
    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: 1,814 Member
    #49
    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
    #50
    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
    #51
    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 Member
    #52
    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 Member
    #53
    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: 3,513 Member
    #56
    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: 1,814 Member
    #57
    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
    #58
    NoTimeForCancer said:

    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
    #59
    NoTimeForCancer said:

    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: 3,513 Member
    #60
    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 Member
    #61
    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

     

    I

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