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Topic: Custom breast prostheses

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  • Posted on: Jan 22, 2010 07:38 pm, edited Jan 22, 2010 07:39 PM by darsura
Joined: Dec 2008
Posts: 67
darsura wrote:

I do not see many posts about custom breast prostheses. I would like to hear from any one who has a custom prosthesis. I would like to know if you like or do not like it, and what type you have.  I have read about Radiant Impressions and New Attitudes. I know they are expensive, and may not be covered by insurance completely, but are they worth the price?   I would also welcome any information from anyone who has knowledge of these custom prostheses.

I am very small breasted, and my "Nearly Me" prosthesis just isn't all I wish it was.  It moves in my sports bra when I exercise, falls out of my regular bra when I bend over, and I wish it had a bit of a nipple.  That is why I am thinking about going the custom route....if I hear anything positive, if insurance will cover it, and if I can find a place that does them (not so easy to find).

Thanks!

Diagnosed on 10/22/08, on my 51st birthday! Had .6 cm IDC (ER+/PR-/HER2-). Post-mastectomy learned I also had a 1.5 cm ILC (ER+/PR+/HER2-). Both stage 1 and grade 1. 0/4 nodes. No reconstruction. Oncotype score on ILC is 9. No chemo. On Arimidex.
Posts 1 - 15 (15 total)
BoobsinaBox…
Joined: Mar 2007
Posts: 164
Jan 23, 2010 06:22 pm BoobsinaBox wrote:

I have seen a thread on here about Radiant Impressions.  You might go back a couple of months and see if you get any help.  I can't tell you any more than that.  You might also check Barbara's non-profit website, www.breastfree.org.  I haven't been there lately, but she may have something about RI there.  Good luck.

Dawn 

darsura
Joined: Dec 2008
Posts: 67
Jan 23, 2010 07:44 pm, edited Jan 23, 2010 07:45 PM by darsura darsura wrote:

Thanks Dawn....I have been to Barbara's site, but not in quite a while.   I will check it out again.  And I appreciate your response.   I know of the other thread, but little response there lately.  Thanks for bumping it!

Donna

Diagnosed on 10/22/08 on my 51st birthday! Had .6 cm IDC (ER+/PR-/HER2-). Post-mastectomy learned I also had a 1.5 cm ILC (ER+/PR+/HER2-). Both stage 1 and grade 1. 0/4 nodes. No reconstruction. Oncotype score on ILC is 9. No chemo. On Arimidex.
Erica
Joined: Oct 2003
Posts: 1,897
Jan 23, 2010 08:54 pm, edited Jan 23, 2010 08:59 PM by Erica Erica wrote:

Hi Donna,

I actually don't have information on my website, BreastFree.org, about Radiant Impressions or New Attitudes, but I have looked into both these companies. I spoke with the creator of New Attitudes several years ago. From all I have heard, these custom prostheses (also called custom breast forms) are good for certain needs. If you've had a mastectomy which has left you very concave or lumpy, so that it's difficult to find a regular prosthesis that can contour to your chest surface, then these custom-made prostheses might be helpful. Also, if you've had a unilateral mastectomy (from reading your post, it sounds as if that might be true for you) and you want the closest possible match to your natural breast, the custom breast forms can do that probably better than a regular form.

It's my understanding that both the Radiant Impression and New Attitude forms are meant to be worn directly against the skin. I've held a Radiant Impression form in my hand. In the back are little holes meant to provide air circulation, but bottom line, they are made of silicone and for me and many other women, silicone is simply too sticky, sweaty, and uncomfortable to wear directly against the skin. Also, I believe the R.I. form is meant to be worn as a contact form. Some women like contact forms, but many women don't find them the most comfortable choice. Also, there are some good contact options available among the non-custom forms.

When I looked into these custom prostheses, I wasn't looking for information to provide on my website. I was looking for myself. I felt that, having undergone such a traumatic surgery, I would try to find the absolute best forms. I just wasn't convinced that it was worth the very high cost (even if covered by my insurance) to get one of these custom prostheses. 

You said you are using a Nearly Me breast form. One of my first forms was the Nearly Me Lite Tapered Triangle. While it's a nice form, I found it heavier and sweatier than other forms I've since discovered, including a couple of forms that have a microfiber backing on the silicone form, so they can be worn comfortably in a regular bra without needing a pocket. They both have small nipple protrusions. I've never had a form fall out of a pocket (I'm small also) but if that's a problem, you can always sew (or have someone else sew) pockets in your regular bra. 

I'm not suggesting that you shouldn't pursue your interest in Radiant Impressions or New Attitudes. There have been women here at bc.org who have said they have a R.I. prosthesis and like it a lot. But you might also look into some of the many non-custom options available as well. To see the ones I and other women have found particularly comfortable, you can check out the Breast Forms section of BreastFree.org. 

One other thing I've learned is that, for me at least, the bra I choose is as important as the form, for comfort, shape, and appearance. And even the tops I wear make a difference. When I'm wearing a low-cut top, I prefer it to be quite clingy--that way, there's no gapping when I bend over and, even in a regular unpocketed bra, I don't feel insecure.

I hope this helps. Please let us know what you decide to do.  

Barbara

BreastFree.org
darsura
Joined: Dec 2008
Posts: 67
Jan 23, 2010 11:28 pm, edited Jan 23, 2010 11:28 PM by darsura darsura wrote:

Hi Barbara,

Thanks so much for your response.  It has been very helpful.

I presently have a "Nearly Me" oval equalizer.  It is the first and only breast form that I have been fitted with.  It is not the best one for me as I stated in my first post.  I would actually like to try a contact breast form.  Silicone against my skin does not bother me, as this is how I wear my form right now.  Can you recommend a good contact breast form?  Would I need to get fitted for a new non-custom form, or can I order one on-line to try?   If I need to get fitted, I will have to find a different fitter, as it took some time (tried on several) for her to find this one for me.

Thanks so much again!

Donna

Diagnosed on 10/22/08, on my 51st birthday! Had .6 cm IDC (ER+/PR-/HER2-). Post-mastectomy learned I also had a 1.5 cm ILC (ER+/PR+/HER2-). Both stage 1 and grade 1. 0/4 nodes. No reconstruction. Oncotype score on ILC is 9. No chemo. On Arimidex.
Erica
Joined: Oct 2003
Posts: 1,897
Jan 24, 2010 08:58 am Erica wrote:

Hi Donna,

If you go to the Breast Form section of BreastFree.org, which I mentioned in my prior post, check out the Amoena Contact form and the TruLife Silk Connect Breast Form. Both are contact forms that have been recommended by women who wear them. If you click the names of these forms on the page (in gold letters) you'll be linked to pictures of them.

If you order one of these online, you should be able to return it if it's not the right size. I would check beforehand, though. I've returned forms online, but not contact ones. Also, check out my Helpful Links section. I list online sites about which I've received good feedback. You may have to submit your own insurance, however, since online retailers usually won't handle that. Do you live in a very outlying area? If not, it might be helpful if you could find a good fitter. If there's a Nordstrom's anywhere near you, they carry Amoena forms and bras (plus they'll sew pockets into any of their regular bras) and generally have good fitters. 

Maybe your current fitter gave you the equalizer because she didn't have anything else small enough for you. One problem at local shops is that they sometimes don't carry a great selection. Even if you're very small, there are lots of forms made (in sizes 1, 2, or 3) that should fit you well. You're fortunate that you can tolerate silicone against your skin. That gives you even more options.

If you search the phrase "contact forms" on this forum, by the way, you should find even more information.

Good luck.

Barbara

BreastFree.org
darsura
Joined: Dec 2008
Posts: 67
Jan 24, 2010 10:18 am, edited Jan 24, 2010 10:19 AM by darsura darsura wrote:

Hi Barbara,

 I think you are correct about my fitter, she did not have a great selection for someone my size.  And the bras I got there fit well, but were not my style whatsoever. 

I will look at at the forms and links you suggested, and there is a Nordstrom's 3 hours from me that I will probably visit soon.

Thanks so much again!

Donna

Diagnosed on 10/22/08, on my 51st birthday! Had .6 cm IDC (ER+/PR-/HER2-). Post-mastectomy learned I also had a 1.5 cm ILC (ER+/PR+/HER2-). Both stage 1 and grade 1. 0/4 nodes. No reconstruction. Oncotype score on ILC is 9. No chemo. On Arimidex.
Erica
Joined: Oct 2003
Posts: 1,897
Jan 24, 2010 11:59 am Erica wrote:

Donna,

Since you have to travel a long way to get to Nordstrom's, make sure to call first for an appointment and make sure the fitter has the forms you're interested in, in your size.

Barbara

BreastFree.org
darsura
Joined: Dec 2008
Posts: 67
Jan 24, 2010 03:52 pm, edited Jan 24, 2010 03:52 PM by darsura darsura wrote:

Good idea Barbara....thanks again!

Diagnosed on 10/22/08, on my 51st birthday! Had .6 cm IDC (ER+/PR-/HER2-). Post-mastectomy learned I also had a 1.5 cm ILC (ER+/PR+/HER2-). Both stage 1 and grade 1. 0/4 nodes. No reconstruction. Oncotype score on ILC is 9. No chemo. On Arimidex.
Weaverani
Joined: Feb 2010
Posts: 1
Feb 8, 2010 10:48 am Weaverani wrote:

I found a pattern for knitting your own prosthesis: you can size it, weight it, use whatever fiber you like. My connection to breast cancer is that I am an OT whose final thesis and research, 25 years ago overseas!, was on mastectomy and recuperation, and how I could help.

Now I am a knitter, and together with a friend, we are knitting these prostheses. I would love to donate a few . The link to the pattern is here: 

www.knitty.com/ISSUEfall05/PATTbits.html

Not being a breast cancer survivor myself, I don't know if these are for comfortable, but the reports I've seen on the web seem to say they are. Supposedly they can be put into any sort of bra you already own. And they don't rub on the scar.

MRSROCKYTOP…
Costa Rica
Joined: Oct 2008
Posts: 147
Feb 11, 2010 02:37 pm MRSROCKYTOP55 wrote:

Weaverani, I sent you a PM.  Kathy


Diagnosis: 11/17/2008, ILC, 1cm, Stage IIb, Grade 3, 1/6 nodes, ER-/PR-, HER2+
eyashar
Tempe, AZ
Joined: Feb 2010
Posts: 1
Feb 23, 2010 01:52 pm eyashar wrote:

Hi Donna,

I have had Radiant Impression Prosthetics for mover 10 years.  I LOVE THEM!!!  They look and feel like the real thing!  I live in Arizona where the temperature can get up to 120 degrees.  They do get a bit sweaty but I take a towel and wipe the sweat.  It's worth it!!!  I was 29 when I found a lump in my breast.  Was told it was nothing.  Don't worry.  I have 2 aunts on both sides of family diagnosed with breast cancer. Nine months later the 1 cm "nothing" was over 4cm and had spread to my lymph nodes 4/19 were positive. I was diagnosed with stage three ductal carcinoma.  I chose to have a double masectomy.  I did chemo and radiation and reconstruction (very painful.) I had an infection for six months on the side that had radiation and had to remove the implant,  Soon after I choose to remove the right one as well.  I remember the day I went to pick up my new boobs.  My fitter attached them with adhesive to my body and I started to cry.  I rarely use the adhesive, they fit comfortably in my store bought bra and for the most part they are part of my body.  I am about to pick up my third set. I have small, medium, and large, Feel free to call me if u have any questions 480-584-2483.  Good luck!!

 Sincerely,

Elizabeth. 

darsura
Joined: Dec 2008
Posts: 67
Mar 16, 2010 11:00 pm, edited Mar 16, 2010 11:02 PM by darsura darsura wrote:

Thanks Elizabeth for posting about the Radiant Impression custom form.  I am looking into them.  Finally their website is up and running: http://www.radiantimpressions.us/pages/contact_us.html, and the customer service representative I have been in contact with has been most helpful.  I only wish my insurance company was as helpful!

Diagnosed on 10/22/08 on my 51st birthday! Had .6 cm IDC (ER+/PR-/HER2-). Post-rightsided mastectomy learned I also had a 1.5 cm ILC (ER+/PR+/HER2-). Both stage 1 and grade 1. 0/4 nodes. No reconstruction. Oncotype score on ILC is 9. No chemo. On Arimidex.
Alicia
Joined: Aug 2008
Posts: 147
14 hours ago Alicia wrote:

I'm probably going to have to lose the implant for my radiated breast due to recurrent infection. I'm tired of surgery and I'm thinking I'm just going to do without recon. Are prostheses comfortable?


Diagnosis: 6/2008, IDC, 1cm, Stage IIa, Grade 3, 3/17 nodes, ER+/PR+, HER2-
Erica
Joined: Oct 2003
Posts: 1,897
12 hours ago, edited 12 hours ago by Erica Erica wrote:

Alicia,

They can be very comfortable and very lightweight. You might start exploring the idea of wearing prostheses (also called breast forms) by checking out my non-profit website, BreastFree.org. In it I provide Personal Stories (several are by women who "deconstructed"), Photographs, and advice and information about Breast Forms, and Bras and Camisoles. I'm always looking for the most comfortable, attractive options. If you read through the site carefully, I really think you'll get a good idea of what's available. Many of those who contributed to BreastFree.org are women I met here at breastcancer.org.

Also, check out my BreastFree Blog. One of my posts concerns searching for the perfect breast form. The comments are helpful, too.

Barbara

BreastFree.org (http://breastfree.org); What, Me Worry? (http://whatmeworryblog.blogspot.com)
Alicia
Joined: Aug 2008
Posts: 147
6 hours ago Alicia wrote:

Erica,

What a great website! I saw it mentioned in passing, but your note convinced me to check it out. I think it will answer a lot of my questions. Right now I'm trying to decide whether to remove the tissue expander or take a low dosage of antibiotics for about six months to try to suppress the infection. I'm not hopeful it will work because I've already had two surgeries to replace the infected implant, and right now my priority is to be healthy and feel better. Thank you for sharing your site with me. 


Diagnosis: 6/2008, IDC, 1cm, Stage IIa, Grade 3, 3/17 nodes, ER+/PR+, HER2-

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