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detzler
@detzler

Posts: 6
Joined: Jul 11, 2016

Chose not to get breast reconstruction

Posted by @detzler, Jul 11, 2016

Hi to all the women out there! I was diagnosed with breast cancer, stage 1, 11 months ago. I am 59 years old. I had a right breast mastectomy and chose to not get breast reconstruction. The prosthesis I was given is hot and uncomfortable so I am finding that I do not use it. Anyone else have this difficulty? I have recently moved and need to start all over with a new oncologist. How do I choose one?

REPLY

Welcome @detzler.
I’m tagging other members of the breast cancer group who may be able to shed some light on comfortable breast prostheses. It’s a hot time of year and finding something comfortable can definitely be a challenge. @kathleensunshineobrien @carold164 @fundytide @martid @luladavis @cautiousoptimism any thoughts?

I’m also tagging @irvkay312, @cynaburst and @hopeful33250 for their thoughts on finding a new oncologist after relocating. What area did you move to, if you don’t mind telling us?

@colleenyoung

Welcome @detzler.
I’m tagging other members of the breast cancer group who may be able to shed some light on comfortable breast prostheses. It’s a hot time of year and finding something comfortable can definitely be a challenge. @kathleensunshineobrien @carold164 @fundytide @martid @luladavis @cautiousoptimism any thoughts?

I’m also tagging @irvkay312, @cynaburst and @hopeful33250 for their thoughts on finding a new oncologist after relocating. What area did you move to, if you don’t mind telling us?

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Hello ladies
I got reconstruction but many of my friends chose to stay flat . There is a grey Facebook group called “flat and fabulous ” that would be a great site to join . Also “Beyond the pink moon ” is a good site and they answer all your questions s there are thousands of survivors on the site commenting .if anyone here wants to friend me on Facebook my name is Kathleen sunshine OBrien and my profile photo is me underwater in a pink outfit

Liked by saltis

Where do you live now ?
My sisters and I all had breast cancer at the same time my one sister is on the new John legend viedo “you and I” watch it she takes her bra off and shows the world her chest with only one breast . I can ask her what prosthesis she uses

At your stage and state, I would personally undertake getting a new Oncologist who will work with you to help you learn and understand the direction you might be most comfortable with, relative to your cancer. As Colleen first noted, you should note your location. From it you can type American Cancer Society, ASCO, or local hospital cancer care item in MD Andersons, Cancer Care, Minnesota Oncology, Johns Hopkins, Stanford, etc. and after finding a suitable location make a consultation appointment and see what is significant to your case, etc.

irvkay312

@irvkay312

At your stage and state, I would personally undertake getting a new Oncologist who will work with you to help you learn and understand the direction you might be most comfortable with, relative to your cancer. As Colleen first noted, you should note your location. From it you can type American Cancer Society, ASCO, or local hospital cancer care item in MD Andersons, Cancer Care, Minnesota Oncology, Johns Hopkins, Stanford, etc. and after finding a suitable location make a consultation appointment and see what is significant to your case, etc.

irvkay312

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Also, it is good to ask around to friends and family in the area. See if they recommend anyone.

When we moved from NC to FL, I looked for a local cancer (we moved to a small town) that had a relationship with the closest Cancer Research Center. My oncology nurse suggested that and it worked well. I did get recovering from BC but have since been diagnosed with a 2nd cancer that unfortunately was found to be Stage IV when I was diagnosed. Living within a couple of hours of the big cancer center has been very useful; I am having liver resection and colon surgery there next week. I have been able to do my chemo treatments at our local center and they coordinate with Moffitt Cancer Center.

Regarding the breast prosthesis; check into the fabric ones that you fill with the fiber to make them the right shape and size. Easy to wash out and very light weight. I have found that sports bras – most of which have inserts already built in – stay put the best. Danskin makes several that are comfortable. They are harder to get on and off, though. TLC makes a camisole that works well and keeps the fake breast in the right spot but it is a bit heavy for summer. I have not found a light weight camisole that can hold everything in place. There are several made specifically for adding a prosthesis and fasten in the front. They are usually wider and don’t ride up. I have not had good luck with the “regular” ones – I think because the bra moves around more and the openings do not stay closed well (unless it is the zipper kind) Sometimes you might need to use the shields for your natural breast if you still have one, depending on the sheerness of the fabric. If you want to duplicate the “real” look – complete with cleavage, check out the transvestite entertainers websites. There are a couple that sell lots of prostheses and they are considerably cheaper than the ones through the cancer sites, plus, according to a friend who purchased some, they are lighter weight and they look VERY realistic under low cut or sheer clothing. I think heaviness is most people’s main complaint about the ones that look “real”. If you had a double – consider just going flat. I know a number of people who do. If you select your tops with ruching (sp?) and extra fabric in the right spots, it works well. I still have one breast, so it is harder to make that choice.

Good luck

Hello, I turned 70 on July 10th. Twenty eight years ago, I had a
preventative bi-lateral mastectomy at Mayo Clinic. I later found I was one
of the first they had ever done. I chose reconstruction and had nothing
but discomfort and pain. Two years ago, I had the implants removed and I
am very satisfied and comfortable. I was fitted for double prosthesis and
yes, they are hot, however, once used to them, they are not too bad. I
have gradually been going without them, and use them mainly for “going out
occasions”. I had residual skin flaps and I still have my own nipples, but
the look is not pretty, in close fitting clothing. I have tried camisoles,
and undershirt type things, and the puckering of my clothing across the
front, remains. I am gradually learning to live with it, and trying to
feel less self-conscious. It is difficult. I am on your journey, my
friend. Be brave, is all I can offer you for advice. Cherril

@cherril

Hello, I turned 70 on July 10th. Twenty eight years ago, I had a
preventative bi-lateral mastectomy at Mayo Clinic. I later found I was one
of the first they had ever done. I chose reconstruction and had nothing
but discomfort and pain. Two years ago, I had the implants removed and I
am very satisfied and comfortable. I was fitted for double prosthesis and
yes, they are hot, however, once used to them, they are not too bad. I
have gradually been going without them, and use them mainly for “going out
occasions”. I had residual skin flaps and I still have my own nipples, but
the look is not pretty, in close fitting clothing. I have tried camisoles,
and undershirt type things, and the puckering of my clothing across the
front, remains. I am gradually learning to live with it, and trying to
feel less self-conscious. It is difficult. I am on your journey, my
friend. Be brave, is all I can offer you for advice. Cherril

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Wow so proud of you to have done that 28 years ago I wish I would had done it they told me 8 years ago to do it I didn’t and I got stage 3 breast cancer so did my 2 sisters . There is an awesome Facebook page called ” flat and fabulous ” you may want to check it out they all help each other . Again wow so awesome you did that 28 years ago .

Hi @yyyy, It looks like you tried to post a message, but it is blank. Let me know if you’re having any problems with the site or email me here https://connect.mayoclinic.org/contact-a-community-moderator/

We have moved from Pennsylvania to northwest Ohio. I am closest to the town of Findlay, Ohio. I am currently checking medical reviews for the oncologists located in Findlay. I will also check into all the sites all of you told me about!

@detzler

We have moved from Pennsylvania to northwest Ohio. I am closest to the town of Findlay, Ohio. I am currently checking medical reviews for the oncologists located in Findlay. I will also check into all the sites all of you told me about!

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Do you live near Cincinnati I have lots of friends there who are survivors . I was also on the news there about 2 years ago for a breast cancer project called ” grace project ” I can get you names if you are near there .

@detzler

We have moved from Pennsylvania to northwest Ohio. I am closest to the town of Findlay, Ohio. I am currently checking medical reviews for the oncologists located in Findlay. I will also check into all the sites all of you told me about!

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I think I am about 2 hours northwest of Cincinnati. I would be interested in any names. I will also look up the “grace project”. Thanks!

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I’ve worn a breast prosthesis for almost 25 years and recently (now living in AZ) found mine to be very warm. I found a website that makes very comfortable and inexpensive prosthesis. A friend who belongs to the group knitted me two and I love them. They fit well, are washable and can be worn in a swimming pool. Here’s the website: http://www.knittedknockers.org/

First, knitted knockers are great! Second, I have a local oncologist but when I was diagnosed with a 2nd cancer Stage IV, they referred me to the closest research cancer center. They coordinate my care (sort of) and I receive chemo locally; am having major surgery at the Moffitt Cancer Center next week, which is about 1 1/2 to 2 hours away, depending on traffic. Although I certainly respect my local oncologist’s wishes that we coordinate with Moffitt and I absolutely feel that, in the case of my surgery, it is the best thing I could do, the distance is difficult. I personally would not want to go through hours of chemo and have to add 4 hours of travel time to it. Just something to think about; if you can find a GOOD local Cancer Center you will eliminate a lot of stress.

Just my opinion, of course. Hang in there!

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