Tissue Expanders AND Ports

NYGMom

TISSUE EXPANSERS: I had a bilateral mastectomy with tissue expander’s inserted on December 8th. I am scheduled to have my first fill on Thursday. I am looking for tips, advise and helpful information that might make this process easier. My tumors were just under the skin so quite a bit of skin was removed. It is already very tight and I am quite nervous about this whole expansion project… as I call it. Please advise! Also…

PORTS: I had my port put in on January 7th. I have my brochure with all of the info about it… but I would like to hear info from you who have experienced using one. Are there things I should know that I will not find in the brochure and how long until it settles in and is no longer painful?

Thank you for your help and have a blessed evening!!

Eil4186

loved my port
I can't comment on the expanders, as I had a lumpectomy. But I did have a port and I was pretty sore for about 4-5 days. My lumpectomy and node removal didn't hurt hardly at all.

Anyway, the port was a blessing because I have small veins. It stings a bit when they poke you with the needle, but if you put on the numbing cream they perscribe one hour before it kills the sting. I actually forgot the cream a couple times and it wasn't that bad even without it. I had my port removed about 8 months after my chemo ended and it was ok, except I was very sore again for about 3 days.

A port is really very convenient and it prevents the chemicals from beating up on your veins. Plus, its easier/more comfortable than having a needle inserted in your arm/hand every time. Good luck! Eil

mmontero38

Hi Kelly and welcome to the
Hi Kelly and welcome to the club none of us wanted to join, but alas here we are. I didn't have tissue expanders since I opted to do the tram flap instead, but I did have a port. The port site was sore for about a week and then it was fine. I was very happy that I did have it since I have very small veins and the chemo really damages the veins. I had my port removed 6 weeks after my last chemo infusion. What kind of chemo will you be getting and how many infusions? When do you start? Good luck to you and hugs, Lili

Aortus

A caution for recent port recipients
My wife Moopy had her port put in 12/29/08. While we were obtaining a second opinion in St. Louis on 01/02/09 (a Friday), the oncologist discovered while doing "routine" stethoscope work that Moopy had a collapsed lung. She spent the weekend in St. Luke's Hospital having it pumped back up.

In the long run, it was positive. The oncologist stopped by on Saturday afternoon and was very optimistic and reassuring - which would not have happened had we gone home Friday evening as planned. But as it turns out, pneumothorax is a not completely unheard-of complication from having a port installed. Moopy had assumed that her hoarseness came from being intubated for the anesthetic, but such was not the case.

We are definitely not faulting the surgeon here at home: he is an excellent, highly experienced surgeon and a good, caring human being. He is the same surgeon who performed the mastectomy and neither of us would hesitate to go to him again. This is just a heads up to recent port recipients to act aggressively on any shortness of breath or any other breathing issues.

Sorry if this has already been posted before... it wasn't a fun lesson to learn.

Joe

NYGMom

mmontero38 said:

Hi Kelly and welcome to the
Hi Kelly and welcome to the club none of us wanted to join, but alas here we are. I didn't have tissue expanders since I opted to do the tram flap instead, but I did have a port. The port site was sore for about a week and then it was fine. I was very happy that I did have it since I have very small veins and the chemo really damages the veins. I had my port removed 6 weeks after my last chemo infusion. What kind of chemo will you be getting and how many infusions? When do you start? Good luck to you and hugs, Lili

Hello Lili!
...the club none of us wanted to join! I like that LOL. I will be receiving Cytoxan and Adriamycin 4 treatments (every two weeks for 8 weeks), then Paclitaxel once a week for 12 weeks. After that radiaton 5x week for 5 weeks. I start January 20th. How about you, what was your treatment plan?
Hugs back at ya! Kelly

cnwrn

Expanders and ports
Hi:

I had my mastectomy (left breast only) on 8-1-08, with an expander and a latissimus dorsi flap (they couldn't use my abdomen because my c-section scar is vertical). The filling of the expander was not uncomfortable due to my chest still being numb from the mastectomy. They used some kind of magnet device to locate the expanders port and then injected 60 to 75 cc each time. I believe I had a total of 475cc inserted. I think they actually started inserting it a week post-op. They had inserted about 125cc immediately after they inserted the expander. Did you have any kind of skin graft performed? I had my expander removed and implant inserted on 12-17. That operation wasn't too painful, even though I also had my ovaries and tubes removed (laproscopically) and my mediport removed. My implant has 700cc in it. It has healed wonderfully, and is much more comfortable than the expander.

Regarding the mediport, as a patient I liked having one. As soon as my oncologist told me I needed chemo, I was going to ask about a port, but the next words out of his mouth were that I was to have a port inserted. My port was inserted 3 days before my chemo started. It was done under a local, with some sedation given. It was not a bad experience. I never had too much pain from the insertion. It took a couple of weeks for the swelling to subside. When I went to have blood drawn and my second chemo treatment they were unable to get a blood return, and had to use cathflo on it, which worked, but that was the only time.

I had to have my chemo stopped after 3 treatments because I couldn't tolerate it, and chose to have the port removed when I was under a general for my above mentioned operations in December (I had 3 different surgeons working on me that day). Ususally it is removed under a local in the surgeon's office. Actually, I was probably the most sore from the removal of the port than the other surgeries, mostly because the strap of my surgical bra went directly over it, but it was only sore like a cut, nothing bad.

When the port was accessed, it only hurt for a second. You cannot feel when they draw blood, or infuse fluids. It is much better than having an IV inserted each time for chemo, or phlebotomy for each blood draw. I am also an RN, and have now seen the patients' side of view of many things, and I can see why so many patient's like having a port. I wouldn't have minded keeping it longer, but in March I will be having a breast lift and possible augmentation on the right breast so it looks more like the reconstructed breast and they wanted the port out so the area could heal before the surgery.

Funny thing, when I first had the port and was showering, I would feel it and panic and think I had a lump. I finally got used to it, and now I just feel the scar and that seems odd that the port bump is gone.

I wish you the best.

Cathy

mmontero38

NYGMom said:

Hello Lili!
...the club none of us wanted to join! I like that LOL. I will be receiving Cytoxan and Adriamycin 4 treatments (every two weeks for 8 weeks), then Paclitaxel once a week for 12 weeks. After that radiaton 5x week for 5 weeks. I start January 20th. How about you, what was your treatment plan?
Hugs back at ya! Kelly

The Club
Hwy Kelly: I was diagnosed with stage 1 invasive ductal carcinoma tumor was Grade 3 which made it very aggressive. I had 7 lymphnodes removed and all were clear. They did find vascular invasion though, so I went through 8 rounds of adriamycin, cytoxan and 5FU every 3 weeks. I started on July 20th and finished Nov 16th 2007. Because of clean margins and having had a mastectomy, I did not have to go through radiation. I am now at the every 3 months stage going to the oncologist for check ups. I had my 1st mammogram in September and everything was clear. I don't know if your oncologist told you but the adriamycin will make you loose your hair. Mine started falling out 2 weeks after my first infusion. If you are going to go out and buy a wig, don't get anything too expensive. My experience and most of us here on this site was that we barely wore it. They are uncomfortable, so because I went through chemo in the summer, scarfs and baseball caps were the norm for me. Indoors, I didn't wear anything. My brother got me this very soft cotton hat, almost like the skull caps babies wear in the hospital when born, which was great for sleeping. You loose a lot of heat through your head so that helped. Feel free to post any questions you may have, as we will try to help anyway we can. The ladies and gents on this site are wonderful, caring and helpful. Cabbott is our resident expert who is wonderful in explaining procedures, latest info, etc. Hugs to you Kelly and good luck, Lili

mmontero38

Word of Caution
An other caution is blood clots. I've known a few people that developed blood clots after insertion of the port, so any pain near the port site, arm or leg should be reported to the surgeon right away. Hugs, Lili

Chellebug

Hi Kelly,
It took about 2-4
Hi Kelly,

It took about 2-4 weeks for me to feel like the port was 'part' of me. Up until then, I could feel it whenever I turned my head, coughed, or laughed. I didn't like that, but it did go away. I've had my current port for about 6 months and I lOVE it. I'm able to swim (except on the days it is accessed). My previous port worked fine too, but they had to remove it so that I could get radiation.

I took each of my older three boys with me (one time each, on separate occasions) when I went in for infusions. They were 10, 8 and 7 at the time. They were very intriqued with my power port with the 3 bumps....I told them it was a very expensive lego that the doctor put in my chest!

Sorry, I don't have any experience with the expanders. I had a bilateral mastectomy without reconstruction.

Give yourself another week or two and your port won't be so 'foreign' to you.

Blessings,
Chelle

mimivac

Port
I'm glad to have my port as well. Doctors have always had a hard time drawing blood from me because of nonexistent veins, so it helps me out. It also helps with your lab work before each chemo session. In my infusion center, you need go to another facility to get lab work (to see if your blood counts are healthy enough for chemo) done if you don't have the port. I no longer feel the port at all and have also gone swimming (in wonderful hot springs in VA) with it.

BTW, thanks for the words of caution on the collapsed lung (so sorry that happened) and blood clots. It's good to know the risks so you can take care of them. There is a solution for everything if you are informed.

Mimi

NYGMom

mmontero38 said:

The Club
Hwy Kelly: I was diagnosed with stage 1 invasive ductal carcinoma tumor was Grade 3 which made it very aggressive. I had 7 lymphnodes removed and all were clear. They did find vascular invasion though, so I went through 8 rounds of adriamycin, cytoxan and 5FU every 3 weeks. I started on July 20th and finished Nov 16th 2007. Because of clean margins and having had a mastectomy, I did not have to go through radiation. I am now at the every 3 months stage going to the oncologist for check ups. I had my 1st mammogram in September and everything was clear. I don't know if your oncologist told you but the adriamycin will make you loose your hair. Mine started falling out 2 weeks after my first infusion. If you are going to go out and buy a wig, don't get anything too expensive. My experience and most of us here on this site was that we barely wore it. They are uncomfortable, so because I went through chemo in the summer, scarfs and baseball caps were the norm for me. Indoors, I didn't wear anything. My brother got me this very soft cotton hat, almost like the skull caps babies wear in the hospital when born, which was great for sleeping. You loose a lot of heat through your head so that helped. Feel free to post any questions you may have, as we will try to help anyway we can. The ladies and gents on this site are wonderful, caring and helpful. Cabbott is our resident expert who is wonderful in explaining procedures, latest info, etc. Hugs to you Kelly and good luck, Lili

THANK YOU!
Thank you for all of this wonderful information! And bless you for all you have been through and coming out of it with such a positve and uplifting attitude:) This is an awesome web site!! BIG HUGS! Kelly

NYGMom

cnwrn said:

Expanders and ports
Hi:

I had my mastectomy (left breast only) on 8-1-08, with an expander and a latissimus dorsi flap (they couldn't use my abdomen because my c-section scar is vertical). The filling of the expander was not uncomfortable due to my chest still being numb from the mastectomy. They used some kind of magnet device to locate the expanders port and then injected 60 to 75 cc each time. I believe I had a total of 475cc inserted. I think they actually started inserting it a week post-op. They had inserted about 125cc immediately after they inserted the expander. Did you have any kind of skin graft performed? I had my expander removed and implant inserted on 12-17. That operation wasn't too painful, even though I also had my ovaries and tubes removed (laproscopically) and my mediport removed. My implant has 700cc in it. It has healed wonderfully, and is much more comfortable than the expander.

Regarding the mediport, as a patient I liked having one. As soon as my oncologist told me I needed chemo, I was going to ask about a port, but the next words out of his mouth were that I was to have a port inserted. My port was inserted 3 days before my chemo started. It was done under a local, with some sedation given. It was not a bad experience. I never had too much pain from the insertion. It took a couple of weeks for the swelling to subside. When I went to have blood drawn and my second chemo treatment they were unable to get a blood return, and had to use cathflo on it, which worked, but that was the only time.

I had to have my chemo stopped after 3 treatments because I couldn't tolerate it, and chose to have the port removed when I was under a general for my above mentioned operations in December (I had 3 different surgeons working on me that day). Ususally it is removed under a local in the surgeon's office. Actually, I was probably the most sore from the removal of the port than the other surgeries, mostly because the strap of my surgical bra went directly over it, but it was only sore like a cut, nothing bad.

When the port was accessed, it only hurt for a second. You cannot feel when they draw blood, or infuse fluids. It is much better than having an IV inserted each time for chemo, or phlebotomy for each blood draw. I am also an RN, and have now seen the patients' side of view of many things, and I can see why so many patient's like having a port. I wouldn't have minded keeping it longer, but in March I will be having a breast lift and possible augmentation on the right breast so it looks more like the reconstructed breast and they wanted the port out so the area could heal before the surgery.

Funny thing, when I first had the port and was showering, I would feel it and panic and think I had a lump. I finally got used to it, and now I just feel the scar and that seems odd that the port bump is gone.

I wish you the best.

Cathy

Thank you Cathy for all of
Thank you Cathy for all of your helpful information. No I did not have any skin grafts. It was not an option for me. Sure wish it had been.I go for my first fill tomorrow. BTW that is a beautiful baby in your pic!!

Redgrl

Tissue expanders/ no port
I just joined and saw your post.. My expanders were placed December 15,2008.. I got myself sooo worked up over the fill and I felt nothing at all when my surgeon did the actual fill.. I have had 2 fills so far they were done 5 days apart, and I never felt the needle go in.. The syringe is kind of intimadating though.. Good luck..

NYGMom

Redgrl said:

Tissue expanders/ no port
I just joined and saw your post.. My expanders were placed December 15,2008.. I got myself sooo worked up over the fill and I felt nothing at all when my surgeon did the actual fill.. I have had 2 fills so far they were done 5 days apart, and I never felt the needle go in.. The syringe is kind of intimadating though.. Good luck..

I HAD MY FIRST FILL
I HAD MY FIRST FILL YESTERDAY AND YOU ARE RIGHT... I FELT NOTHING. ITS FUNNY HOW WE CAN GET OURSELVES WORKED UP. I WAS SO NERVOUS. ONLY ONE OUNCE ON EACH SIDE BUT IT'S A START!!!

cnwrn

NYGMom said:

Thank you Cathy for all of
Thank you Cathy for all of your helpful information. No I did not have any skin grafts. It was not an option for me. Sure wish it had been.I go for my first fill tomorrow. BTW that is a beautiful baby in your pic!!

You're Welcome
Hi:

You're welcome, I'm glad you found the info helpful. I'm glad that your fill went OK today. It is scary when you don't know what to expect, but now you know it isn't too bad.

Thanks about the comment on the baby. That is my grandson, Braedon, who was born 10-24-08. I agree, he is beautiful! I intend to get another photo like this every couple months to compare our hair! I know have about 1/4" of black hair (with white scattered at the temples). My hair was brown before (of course, the white was there before too!).

I wish you the best. Keep us informed on how everything goes for you.

Cathy

mmontero38

NYGMom said:

I HAD MY FIRST FILL
I HAD MY FIRST FILL YESTERDAY AND YOU ARE RIGHT... I FELT NOTHING. ITS FUNNY HOW WE CAN GET OURSELVES WORKED UP. I WAS SO NERVOUS. ONLY ONE OUNCE ON EACH SIDE BUT IT'S A START!!!

Woohoo. Glad it went well
Woohoo. Glad it went well Giants fan. LOL Hugs, Lili

rjjj

In the news
In watching the News last nite they gave a warning on numbing cream (with litacane) that stated it has known to cause death from heart problems a side effect??? I am going to be asking about this.

I was sore for about a week from having my port put in, but was told by my oncologist that she thinks everyone should be "born with one"! I have not had any trouble with it except the first blood draw i only put the numbing cream on for 10 min. before instead of an hour and it hurt more than the first time it was used...my fault i guess. I am still very glad i had it, as i wathched my mom about 20 years ago go through the veins until she had none left and in the end they had to go through her toe. They had no nausea medicine like they have now either and the vomiting etc. was so very hard on her. I am so delighted that science has come so far in these 20 years

God Bless

Jackie

cnwrn

rjjj said:

In the news
In watching the News last nite they gave a warning on numbing cream (with litacane) that stated it has known to cause death from heart problems a side effect??? I am going to be asking about this.

I was sore for about a week from having my port put in, but was told by my oncologist that she thinks everyone should be "born with one"! I have not had any trouble with it except the first blood draw i only put the numbing cream on for 10 min. before instead of an hour and it hurt more than the first time it was used...my fault i guess. I am still very glad i had it, as i wathched my mom about 20 years ago go through the veins until she had none left and in the end they had to go through her toe. They had no nausea medicine like they have now either and the vomiting etc. was so very hard on her. I am so delighted that science has come so far in these 20 years

God Bless

Jackie

Lidocaine
Jackie:

Lidocaine can be used IV when a patient codes, so I know Lidocaine can affect the heart, but I have never heard of problems from lidocaine cream regarding the heart. Lidocaine patches are used transdermally for localized pain (such as the back or knees) on patients, worn for 12 hours on and 12 hours off. Again, I have never heard of heart problems from them either. Of course any med can cause allergic reactions or toxicity.

I never used any kind of numbing agent when my port was accessed and it only hurt for a second or two when it was accessed. The nursed would always count to "3" so I would know when they were going to access it. By the time they said "3", the poking pain was there and gone.

Take Care,

Cathy

VncvrKat

I know this is an old thread, but wanted to ad to it. Mines kind of different, I had my port 5 months prior to my double mastectomy surgery.

Unfortunately both my surgeon and plastic surgeon hated that it was there, but I have stomach issues and use a port everyday.

I'm also so excited that your fill ended up going on. I saw that needle. I got so scared, stressed myself out and then realized I was numb in the area and I didn't even feel it.

Which I hope, my PS said it's possible that the some of the nerves can grow back. I'm hoping over time this happens.

I also have alot of scar tissue on my right breast right at the port in the expander I had a previous port there that had a massive infection at the port site. I was concerned about issues filling expander and nope, the magnet was able to register thru it, it went really well.

I think this is all my experiences in this subject.

Thinking of all,

Kat

DC2

As someone who has survived two different types of cancer (age 26) and now age 49, I had a port and it was the BEST THING EVER!!!! One treatment in the arm was enough for me. Speeds up treatments, decreases discomfort, and makes blood draws a breeze. I am the poster child for ports!!

Fills with expanders--I can only speak for myself, but I did not feel a thing. After my double mastectomy, I had no feeling where my new mounds were going to be. It is like my chest area is asleep. I can feel pressure, but no feelings or pain. I also did not get to keep my nipples. If you were lucky enough to qualify to keep your nipples, that might be different.

My biggest message to anyone fearful of double mastectomy, reconstruction, and/or lypo for fat graph ting, is this--it was not nearly as bad as I thought. My surgeries and aftercare were not painful experiences. Tylenol and Ibuprophen was all that was needed--even the day of surgery.