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Papillary serous sarcoma patients

24

Comments

  • ncg007
    ncg007 Member Posts: 136 **
    Gardena said:

    Keeping Port after treatment?

    Nancy, I just read your post - your doctor's comment about getting to two years clear reminded me of something my radiologist oncologist said to me, which was, "you dont need to worry about this cancer raging back. (I was questioning whether the time to do radiation was worth it, or was it just going to come raging back in a month). He went on to say that in my case, reoccurance would most likely happen after one year, if it was going to happen sooner rather than later. I guess the idea being that if anything is left (after the aggressive treatments and the positive response of my body), its microscopic and it would take that long to become apparent.

    I'm in week 2 of doing 25 external radiation/6 low dose cisplatin treatments. Finished carbo/taxol 5 weeks ago - I am wondering if I shld keep my port in for a year from this May 1st when I'm done w treatment. I have no problem w it, and I dont like the idea of taking it out only to have to put it back in one years time, if in fact, I need chemo again.

    May I ask, do you still have your port? Ladies who have just finished treatment, do you still have your port? How long are you keeping it? Eldri's port horror story is the reason I think I shld keep mine for awhile. I dont want to mess w a good (ie; working) thing.

    Thanks all, I love this group

    Port

    Gardena...yes my dr too said recurrence most likely 1-2 years.  Funny you should ask about port, I left my dr a message about that today.  I spent over an hour this past Friday with Onc and his PA discussing plans for ongoing monitoring and somehow missed the port topic on my list.  I would like to remove it and will have to see what Onc says.  But I am curious too to what others have done.

    Nancy

  • Gardena
    Gardena Member Posts: 102
    ncg007 said:

    Port

    Gardena...yes my dr too said recurrence most likely 1-2 years.  Funny you should ask about port, I left my dr a message about that today.  I spent over an hour this past Friday with Onc and his PA discussing plans for ongoing monitoring and somehow missed the port topic on my list.  I would like to remove it and will have to see what Onc says.  But I am curious too to what others have done.

    Nancy

    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

     

     

  • Sandy3185
    Sandy3185 Member Posts: 228
    Port

    I had my surgery on 12/05/2013 and completed chemo in May 2014. I had my port removed in Oct 2015, so about 18 months after completing chemo. I am 2 years NED and I felt like keeping my port was as if I was just waiting for the UPSC to return. I go for my quarterly check up on Friday so, as always, I'm a little nervous! But I'm actually feeling great. Good luck, Sandy

  • Soup52
    Soup52 Member Posts: 905
    Sandy3185 said:

    Port

    I had my surgery on 12/05/2013 and completed chemo in May 2014. I had my port removed in Oct 2015, so about 18 months after completing chemo. I am 2 years NED and I felt like keeping my port was as if I was just waiting for the UPSC to return. I go for my quarterly check up on Friday so, as always, I'm a little nervous! But I'm actually feeling great. Good luck, Sandy

    I still have 3 more chemo to

    I still have 3 more chemo to go, but in my mind I have planned to keep my port for a while as I have had a friend with a couple reoccurrences. I wouldn't look forward to having it taken out and then put back in. Maybe I would feel different if I was having problems with it. Oh well, time will tell.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    Soup52 said:

    I still have 3 more chemo to

    I still have 3 more chemo to go, but in my mind I have planned to keep my port for a while as I have had a friend with a couple reoccurrences. I wouldn't look forward to having it taken out and then put back in. Maybe I would feel different if I was having problems with it. Oh well, time will tell.

    I finished chemo in Dec. My

    I finished chemo in Dec. My port has bothered me since the beginning. Not horrible pain, but it reminds me often that it is there.

    I talked to my local oncologist about having it removed and he wanted me to have another check up with my surgeon first. If all is well after that, I plan to have it removed. Unless either of them say to keep it....

    Like others, I sure would hate to have another surgery to replace it but I'm counting on being done with cancer forever!

    Love and Hugs,

    Cindi

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

    Keeping Port after treatment?

    Nancy, I just read your post - your doctor's comment about getting to two years clear reminded me of something my radiologist oncologist said to me, which was, "you dont need to worry about this cancer raging back. (I was questioning whether the time to do radiation was worth it, or was it just going to come raging back in a month). He went on to say that in my case, reoccurance would most likely happen after one year, if it was going to happen sooner rather than later. I guess the idea being that if anything is left (after the aggressive treatments and the positive response of my body), its microscopic and it would take that long to become apparent.

    I'm in week 2 of doing 25 external radiation/6 low dose cisplatin treatments. Finished carbo/taxol 5 weeks ago - I am wondering if I shld keep my port in for a year from this May 1st when I'm done w treatment. I have no problem w it, and I dont like the idea of taking it out only to have to put it back in one years time, if in fact, I need chemo again.

    May I ask, do you still have your port? Ladies who have just finished treatment, do you still have your port? How long are you keeping it? Eldri's port horror story is the reason I think I shld keep mine for awhile. I dont want to mess w a good (ie; working) thing.

    Thanks all, I love this group

    Don't pay any attention to

    Don't pay any attention to the bad luck I had with my port.  The vast majority of ports heal really good and don't cause people any trouble at all.  My physical therapist had reviewed my records prior to my appointment yesterday and when I got in there, she laughed and said said she was afraid to do the testing because my leg might snap.  LOL - I told her I felt the same way!!  I've just been going through a string of bad luck hopefully that's all about to change!!!  At least, that's what I keep telling myself - ha ha!!!

    We hired a new office manager last week and she seems to really be working out great.  She's taking the online Microsoft Access class (our work data base is Access); otherwise she doesn't need much training.  Our last office manager worked for us for seven years and left right in the middle of my chemo which was really hard - luckily our son had graduated from college with a business degree and he took over for the winter.  This takes a lot of stress off me and I can go back to my 12-14 hours a week doing the bookwork.  My physical therapist said there is a new exercise class starting up for cancer survivors and she's going to get the info for me tomorrow at my appointment so I can get in it.  I just want my pre-cancer life back!!!!

    Love you all!

    Eldri

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

    Keeping Port after treatment?

    Nancy, I just read your post - your doctor's comment about getting to two years clear reminded me of something my radiologist oncologist said to me, which was, "you dont need to worry about this cancer raging back. (I was questioning whether the time to do radiation was worth it, or was it just going to come raging back in a month). He went on to say that in my case, reoccurance would most likely happen after one year, if it was going to happen sooner rather than later. I guess the idea being that if anything is left (after the aggressive treatments and the positive response of my body), its microscopic and it would take that long to become apparent.

    I'm in week 2 of doing 25 external radiation/6 low dose cisplatin treatments. Finished carbo/taxol 5 weeks ago - I am wondering if I shld keep my port in for a year from this May 1st when I'm done w treatment. I have no problem w it, and I dont like the idea of taking it out only to have to put it back in one years time, if in fact, I need chemo again.

    May I ask, do you still have your port? Ladies who have just finished treatment, do you still have your port? How long are you keeping it? Eldri's port horror story is the reason I think I shld keep mine for awhile. I dont want to mess w a good (ie; working) thing.

    Thanks all, I love this group

    Ports

    After my 1st go round surgery, chemo, radiation, both internal and external I was told I was cancer free.  2 of my doctors said go.ahead and have it taken out,  my Gyn-Onc recomended leaving it in for 2 years because if it was going to reccure it would more likely happen during the 1st 2 years.  Well. I listened to the 1st 2 and had it taken out.  Stupid ME,   7 months later I had to have it put back in when the cancer matastisized.  It was harder to get back in because of scar tissue and it now sits at a little bit of an angle.  Not everyone can access it easily.  It works find and does not hurt, but most nurses have a hard time,getting into it.  Hind sight is much better, I wish I had left it in.

    Hugs and Prayers,  Lou Ann

  • Kvdyson
    Kvdyson Member Posts: 789
    Soup52 said:

    I still have 3 more chemo to

    I still have 3 more chemo to go, but in my mind I have planned to keep my port for a while as I have had a friend with a couple reoccurrences. I wouldn't look forward to having it taken out and then put back in. Maybe I would feel different if I was having problems with it. Oh well, time will tell.

    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.

  • Editgrl
    Editgrl Member Posts: 903
    Gardena said:

    Keeping Port after treatment?

    Nancy, I just read your post - your doctor's comment about getting to two years clear reminded me of something my radiologist oncologist said to me, which was, "you dont need to worry about this cancer raging back. (I was questioning whether the time to do radiation was worth it, or was it just going to come raging back in a month). He went on to say that in my case, reoccurance would most likely happen after one year, if it was going to happen sooner rather than later. I guess the idea being that if anything is left (after the aggressive treatments and the positive response of my body), its microscopic and it would take that long to become apparent.

    I'm in week 2 of doing 25 external radiation/6 low dose cisplatin treatments. Finished carbo/taxol 5 weeks ago - I am wondering if I shld keep my port in for a year from this May 1st when I'm done w treatment. I have no problem w it, and I dont like the idea of taking it out only to have to put it back in one years time, if in fact, I need chemo again.

    May I ask, do you still have your port? Ladies who have just finished treatment, do you still have your port? How long are you keeping it? Eldri's port horror story is the reason I think I shld keep mine for awhile. I dont want to mess w a good (ie; working) thing.

    Thanks all, I love this group

    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

     

  • Gardena
    Gardena Member Posts: 102
    Lou Ann M said:

    Ports

    After my 1st go round surgery, chemo, radiation, both internal and external I was told I was cancer free.  2 of my doctors said go.ahead and have it taken out,  my Gyn-Onc recomended leaving it in for 2 years because if it was going to reccure it would more likely happen during the 1st 2 years.  Well. I listened to the 1st 2 and had it taken out.  Stupid ME,   7 months later I had to have it put back in when the cancer matastisized.  It was harder to get back in because of scar tissue and it now sits at a little bit of an angle.  Not everyone can access it easily.  It works find and does not hurt, but most nurses have a hard time,getting into it.  Hind sight is much better, I wish I had left it in.

    Hugs and Prayers,  Lou Ann

    the scar tissue of which you speak, Lou Ann

    Is the basis for my interest in keeping my port in. Like Chris, my doesn't bother me (other than the Frankenstein lump in my chest) so figure better safe than sorry. See if my doc concurs today, I'll check back later.. 

  • 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