For women and girls with Poland Syndrome the underdevelopment of the breast on the affected side can be an issue. This underdevelopment can range from a breast that is smaller than the other, to complete absence of the breast. The pectoralis, large chest muscle, is also impacted and may be completely missing in some cases. Breast reconstruction is a commonly sought solution for the breast impacted by Poland’s Syndrome. Until this time or as an alternative to surgery a prosthesis may be worn.
Finding a bra or swimwear that is comfortable and supportive can be difficult. PIP-UK have spoken to the Nicola Jane (formerly Bra Clinic) to see what advice is available for these situations. Here is what they advise,
Initially I would advise you ask for an appointment to see a Breast Care Nurse this may be through your GP.
The Breast Care Nurse should be able to advise/provide a partial or full breast form/prosthesis.
( You may be entitled to a breast form and fitting through the NHS saving a lot of money and also getting correct advise and fitting).
The Breast Care Nurse may be able to advise someone they use for bra fittings.
I would advise a padded bra with pocket linings to secure the breast form.
Amoena Lara bra and Anita Tonya bra are suitable and what I would recommend
- Amoena are based in Southampton and supply some retail shops.
- Anita are London based and again supply some retail specialist shops.
- Nicola Jane have a shop in London.
If you look at the website to see what style of bra you like, because the companies who supply Nicola Jane also visit hospitals, keeping them updated with products so the Breast Care Nurse may have samples of some bras to show you.
I am aged 65 and was born with Ps, right breast missing and major pectoral muscle. I used to buy bras from M&S and I used to pay for Anita bras & my prosthesis at Nicola Jane( good mail order and shops in Chichester and London) until I found out that the NHS provide the same one free. However I do pay for my bras to be hand made by Rigby Peller. They are expensive (£250 make sure you get the VAT back) but with hand washing I can make them last a long time. I told M&S that their post cancer bras were no good for people like me, but nothing changed.
Thank you for sharing this information with us 🙂 x
I have a 10 year old daughter that has recently been diagnosed with PS, whilst I had alway noticed a slight difference in her left side I only became concerned as she entered puberty and her body started changing. We had seen a consultant and she will be referred for surgery when she’s 16/17 but we have been offered no practical help to manage the intervening years. She is very active and a member of a swimming club she is becoming increasingly conscious of her appearance.. do you have any advice for young girls as the only sites I can find are for women following mastectomies.
I am a 15 year old girl who has struggled with this same issue. The best advice I can give is to buy bathing suits that are cute, but provide more coverage. I would suggest bandeau bikini tops or finding bathing suits that allow space for a prosthetic. I started the reconstructive process at 11, so my body is a bit different because I have a tissue expander (a circular implant that stretches the skin for future reconstructive surgeries; also looks nothing like a normal breast). I was diagnosed at birth, so I’ve been to doctor after doctor and to therapist after therapist and all I can say is she has to learn how to love herself as best as she can. That’s really hard to do, and I still struggle with it, but she has to accept that her body is different and beautiful in its own way. I wish her the best:)
Thanks for replying Corena, really good advice and much appreciated!
Hi Amanda, I am really sorry we missed this comment. I hope you have found some advice since re bra’s. Its really difficult as most specialised bra sections are primarily aimed at women following mastectomies, this is the best one we have come across and been recommended. I have heard of some very positive experiences from visiting a marks and spencers bra fitting service too. We do have female trustees Shirley and Angel with Poland’s Syndrome who would be able to help further if you want to drop me a line on sam.pipuk@gmail.com I can put you in touch.
Hi I’m helen I have a daughter going on 12 and she has poland syndrome we are desperate to find a bra that works for her any help would be much appreciated
My mum made me a pad from sponge and cotton wool when I started sprouting breasts (well, breast!) to fill the left side out, then when I was 16, I had a silicone implant. That wasn’t so great, and by the time I was 24, the sac around it had calcified and I just had a hard lump instead of soft tissue. The calcified sac broke when I had a slight accident, and I had it and the implant removed. I then got busy having babies and just wore baggy clothes for a few years. In my early 30s, I had costochondritis ( https://www.nhs.uk/conditions/costochondritis/#overview ) following which I was referred to a breast nurse. She gave me a silicone breast to wear – it stuck to my chest where a breast should have been and stayed in place as long as I wore a bra. I hated it. When I was 38, I found out about tram flap surgery, (https://www.breastcancer.org/treatment/surgery/reconstruction/types/autologous/tram/what-to-expect ), my GP supported me to have it, so when I was 39, I had the surgery. It’s wonderful; I had real cleavage for the first time ever. I love how I look now, am really, really happy with the result of the surgery and would recommend it to anyone! There were a few problems following it – repeated MRSA infections, but it was still worth it!
Pre surgery, I bought all my bras from M&S, and still do now. The only thing I have to do is take the wire out of the left cup, as the blood vessel feeding the transplanted tissue crosses over my rib cage and an underwire would reduce the blood circulation to my breast.
Answering Helen: I still remember being 12 and hating wearing a bra, just because it was very uncomfortable for me, I had no pectoral muscle on my right side and just skin on my bone above my developing breast. The material on my skin was just unconfortable and the bra would never stay put on my shoulder. I find that now, sports bras are the best, plus they usually come padded. I now buy masectomy bras if I want a bit of volume, as I can add on a filler ( primark ones are good enough in the right bras). At the age of 12, I had not had any operations yet so I was really self conscious, stopped going to the swimming pool and dreaded the summer months. Eventually at the age of 18, I had a reconstructive operation with an implant under the clavicle to fill in the gap and a mammal implant to give volume to my atrotrophied right breast. With age, my breast changed and it was far from perfect so I still did not like going to the beach but managed to find the right swimming costumes. I sawed a pocket and used a filler which did the trick. Then I had three children and managed to breastfeed all three for a long time. I was proud of my breast which at the end of the day was doing what it needed to do! My right side breast affected by the syndrome was actually the one producing the most milk to my astonishment! After that, I was not so worried about my breast, having breastfed three kids, it had changed again but I was never going to go topless on the beach anyway. Recently, I have had both implants removed as the top one punctured, this after 38 years in my body. Both implants were removed as they were old but the top one could not be replaced. I also had a pneumothorax during the procedure, which Iguess happened because I hardly have anything but skin on top of shorter ribs protecting parts of my lung. I recovered well from this anyway. I was upset at first having lost my top implant, which filled a gap but also felt as an extra layer and protection, but I realised that after spending a week in the hospital ward with ladies having to go through masectomies and reconstructive surgery following breast cancer, that I was actually the lucky one. I am now 50, totally accepting my body as it is and realising that I wasted years being self conscious. I must say it is also easier now with a bit of research to find the right bras and swimwear.Your daughter needs to try on and you might just have to spend a bit more money on her but if it makes her feel more confortable and confident, it is well worth it.