Lack of Info

Cilver · New User Joined: 25 Apr 2005 Posts: 4

I just had a Bilateral Thursday the 14th. My left was invasive ductal carcinoma and my right was optional, however came up precancer in biopsy. Thank God for instincts. My nodes were not effected despite the large size of the 2 inch toumour. I have tissue expanders in both breast sites. It conserns me that there is so little information on the recovery and what to expect. I feel like a boa constictor is wrapped around me and I wish I had some ionfo for the range of normal recovery pain and discomfort. Any experience or gooks books on the matter ? Is there a spell check on this site ? My spelling is so poor. Confused

Muttsmom · Posted: Mon Apr 25, 2005 8:22 am Post subject: Re: Lack of Info

Hi,
The tightness you're feeling is unfortuately normal. I tried bilateral reconstruction with expanders and then implants, but got no further then the expanders. Are they planning on giving you radiation? My plastic surgeon and another opinion I got from a different one both said they will no longer use expanders for ladies who have gotten or will get radiation. There is so much damage to the tissue, that the skin just keeps getting tigher. If you had the expanders put in after surgery, but prior to chemo, just my opinion, but it concerns me that you're having so much tightness already. I had to have my expanders removed because the radiated side wouldn't stretch and the expander was literally trying to push back out of my chest near the sternum area. Are you completely filled now? From what I was told, the 1st couple days you would be tight and then it would get better, which mine never did, it was tight and painful all the time. Finally after 4 months of filling and removing some saline, filling and removing, the PS went in to remove the damaged tissue from radiation and the tissue wasn't stretching and that's when he saw that it was trying to come 'back out. I doubt I'll ever try reconstruction again, but if I do it will be the LD Flap.
I don't know if I was of any help, but feel free to write me if there's anything I can do.
Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Cilver · New User Joined: 25 Apr 2005 Posts: 4

Thank You. My surgery was only about 10 days ago. I don't need radiation as the cancer was only in the breast. I'm no where near fully filled and see my PS next Monday. The tightness bothers me. When I sleep it gets worce and when I do my exercises it really gets worce. I just wonder if it's normal or not. I'm very muscular by nature and I guess I worry that my musles are non compliant with the efforts of the expanders. I expected a little relief by now. It's really hard to say since I can't find any info on what to expect after surgery. Cilver Confused

Muttsmom · Posted: Mon Apr 25, 2005 9:32 am Post subject: Re: Lack of Info

I got tons of literature when I opted for the expanders as well as the PS's head nurse telling me what to expect. I'd definately be asking for info that you can read. I know women who have had expanders and were very happy and had no problems, but I remember the PS telling me that sometimes the tightness continues to get worse after the implants are put in and the tissue heals and tightens and some opt to have them removed because of the discomfort and sometimes they will look as round as a softball and not a natural look. I'm sure mine was just telling me everything, even if it wasn't common so I could make an informed decision. Hopefully all will go well with yours and you'll be pleased with the results.
Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Cilver · New User Joined: 25 Apr 2005 Posts: 4

Where did you actaully get the literature ?

Muttsmom · Posted: Tue Apr 26, 2005 7:34 am Post subject: Re: Lack of Info

I got the literature from my Plastic Surgeon's office along with pictures of what implants looked like vs real breasts. I know when I see someone on t.v. that is larger up top then most I can tell right away if they've had implants because of the before and after pictures I saw. Not they I sit and look at women's chest..... lol Next time you watch t.v. and you see someone with a low cut dress on they will either look like you did prior to your mastectomy or they will look rounded, the rounded ones are inplants. The PS did tell me upfront that they wouldn't look like natural breasts, that they would be round and that's why he recommended the LD Flap since I was to chicken to even consider the Tram Flap, because they use your own tissue, muscle etc and they look natural. Mine gave me literature, pictures, descriptions of the procedures of all 3 reconstruction choices. After 4 months of pain and have to remove some of the saline to give me a break from the pain, then trying again, and the expanders had to be removed, I decided I'd be boobless and I'm very happy with my decision. I'm not be any means telling you that you should do as I did, you have to feel good about your decision and you'll do what's best for you Smile

_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

RachelEsther · Posted: Mon May 02, 2005 7:22 pm Post subject: Re: Lack of Info

Dear Cilver,

Just a few weeks out, recovering from both a mastectomy and reconstruction, and probably node biopsy. Well, yes, tightness is to be expected. The expanders probably feel like bricks, and the skin/tisssue inside feels a bit abraded, right? Normal, normal, normal.

You should feel better soon. When they do, that's when they will start the fill-ups! Ah, no rest for the weary. I got muscle relaxer meds for the first few weeks. For pain I took Ibuprofin, which worked just fine. I actually felt great after 2 weeks, and just some discomfort from the "brick". By the way, it will stay like a brick. But I love my silicone implant - it's soft, smushy and comfy. So hang in there.

I also had about a 2 inch tumor (plus 2 others!) and had a single mastectomy, expander reconstruction, then chemo and radiation. Since you are not getting radiaiton, you should have the most gorgeous set of breasts! And not only now, but for years to come! And it is easier with a bilat to get a matching set - my fake and real one are now at different altitudes (hey, the real one is 51 year old, it's entitled to droop a bit!) so I have to have surgery on the real breast for symmetry.

The radiation complicates things a bit, but I am getting a pretty good result anyway since radiation came when I was all stretched out. [See www.fotki.com/bcsurvivor for photos - read the Welcome for indepth info on what the story is.]

For more discussion on expanders and implants, see www.komen.org and click on Forums, then Sound Off. Search around, even in the archives, this is a topic that is discussed endlessly, obsessively, and in great detail.

By the way, make sure your surgeon doesn't overfill your expanders. If he just fills to the point of tightness, it'll be fine. I had no pain from fillups, but took ibuprofin ahead of time just in case.

Rachel
_________________
Rachel
Age 50 at diagnosis, Stage IIIA
IDC grade 1, DCIS grade 2
LB Mastectomy, Expander Recon 3/3/2004
Dose Dense Chemo completed 07/01/04
Radiation completed 09/02/04
Silicone Implant 11/22/04, removed 7/05 due to infection (dental cleaning), replaced 12/05. Reduction RB for symmetry 04/06
Tamoxifen 10/04-10/06, Arimidex 10/06 on

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