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Papillary serous sarcoma patients

PHK1952's picture
PHK1952
Posts: 10
Joined: Mar 2016

I am newly diagnosed with papillary serous carcinoma and needing some help preparing for the surgery and treatment to follow. Does anyone have some good articles or practical advice? My husband has multiple myeloma and there is a lot of useful info through MMRF and IMF. 

Is there anything for my type of cancer? Thank you!

phkodal@gmail.com

PHK1952's picture
PHK1952
Posts: 10
Joined: Mar 2016

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
Posts: 136
Joined: Nov 2015

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

PHK1952's picture
PHK1952
Posts: 10
Joined: Mar 2016

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's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

 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

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

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's picture
Soup52
Posts: 906
Joined: Jan 2016

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's picture
TeddyandBears_Mom
Posts: 1808
Joined: Jun 2015

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

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

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.

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

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.

Gardena
Posts: 102
Joined: Jan 2016

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
Posts: 102
Joined: Jan 2016

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

pinky104
Posts: 574
Joined: Feb 2013

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.

ksdehn30
Posts: 33
Joined: Oct 2008

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
Posts: 574
Joined: Feb 2013

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!

ksdehn30
Posts: 33
Joined: Oct 2008

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. 

bluehyacinth
Posts: 50
Joined: Feb 2016

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.

PHK1952's picture
PHK1952
Posts: 10
Joined: Mar 2016

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's picture
Kvdyson
Posts: 789
Joined: Jan 2016

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's picture
Editgrl
Posts: 903
Joined: Jun 2015

 

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's picture
TeddyandBears_Mom
Posts: 1808
Joined: Jun 2015

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

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

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
Posts: 574
Joined: Feb 2013

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. 

 

 

CindylovesMike's picture
CindylovesMike
Posts: 50
Joined: May 2016

I had mine out in Jan 6 months post chemo treatment, Mine hurt and I had a lump develop because there was a problem with the tube that comes out of it.

my onco said I could have it out if I wanted to. When I saw my surgeon his recommendation was to get them out because of infection. He said not a big deal to put it back. My next scan was clear which was 6 months later. But I don't have pain in the breast it was above anymore.

Peggylee
Posts: 13
Joined: Jul 2016

I've  been  on here different times, don't see any new posts.  Hope all is well..... did you move somewhere else?

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

There may not be new posts on this particular thread.   Sometimes threads just peter out.  But there is plenty of activity on other threads on the board and please feel free to start one of your own if you have a question.  We're here!

Also, make sure that you are logged in.  If you are not, you won't see that new posts have been made on the various threads though you will see the listing of the threads.

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