Papillary serous sarcoma patients

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

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 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 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.

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 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

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 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.

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

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.. 

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 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

joannewtta said:

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.

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

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,  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

EZLiving66 said:

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 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 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 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