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prosthesis with textured back - anyone had problems?

49 REPLIES 49
Member

Re: prosthesis with textured back - anyone had problems?

Go girl I am sure it will be brilliant.  No looking back just onward and upward

Member

Re: prosthesis with textured back - anyone had problems?

Talking of silk , I bought some pure silk scarves , just cheap ones from EBay , but they are so soft on my scar . I put them in my bra between my skin and whatever type of boob I am wearing .

Am just waiting for my stretchy material to arrive so that I can get creating , am looking forward to what I can make and pinning my hopes of the perfect boob for me on it . LOL .
Hugs,
Jill x

Member

Re: prosthesis with textured back - anyone had problems?

Hi Seabreeze 

Nicolajane.com view all protheses, have two models in silk made by truelife. I am also very comfy in a weighted foam form. It has good shape and with the extra weight stays in place well. I would have thought that if your problem is allergy to silicone you should be able to get the silk form from the NHS or some help via a cancer charity. 

Good luck 

NetteW 

Member

Re: prosthesis with textured back - anyone had problems?

Silk? Will def check that out - thanks NetteW
Seabreeze (maybe with a silk sail?)!
Member

Re: prosthesis with textured back - anyone had problems?

Hi Seabreeze

Have a look at the website that Lavenderblue posted last night on make your own protheses. It is an America site, I think, but may be you could have a go using a neck pillow, fabric and filling. Have you tried putting an additional layer between you and allergy boob. A piece of fabric or even a sanitary towel.

Just had a thought how about putting a coat of vasaline on skin as a barrier cream. I think you can probably ditch the contact boob.

I think I read that Amoena send out trial forms. I am wondering if the silk one would work for you. It is worth trying their customer service and also the ladies at Nicola Jane.

NetteW 

 

 

Member

Re: prosthesis with textured back - anyone had problems?

Hi all,
I'm so pleased so many of you have joined this thread and with such innovative ideas!
I feel a bit like I'm going round in circles, possible allergy to prosthesis (comment from fitter in the job for about a decade when I showed her my lovely (not) pink shiny tastical skin photos after wearing one (well 3 types now) for as many minutes, pushed to hours as one can bare...litterally, without being oh so vlose to whipping the thing out on the bus!
no, not normally a flasher...but ou discomfort can do all sorts!
so, the second opinion was possible allergy, went to see bc nurse, a few days later she got back to me, " you need to request the blood test for a possibke allergy via your GP.....see GP....get blood taken for test.....weeks later the hodpital whoch tests the blood gets back to my GP sayjng...."we cannot carry out the test, it needs to be carried out by the doc responsible for fitting the prosthesis" and they destroyed the blood sample! Get this, its the same hospital who test the blood as where my surgeon onc works...talk around tearing around in a circle though at sn epically slow speed! It's now nearly 3/4 year since I should have had a prosthesis which works snd doesn't make me itchy! Tried knitted knockers but can't get it to work for me....I'm lopesided signifucant reduction from G....still surviving on a soft v v v stretchy bra which pulls the mini(er) boob over to the bigger sized original survivor!
Thank you to everyone joining this thread of increasing DIY!
xxx Seabreeze (kind of bobbing along this eve)
Member

Re: prosthesis with textured back - anyone had problems?

Hi Lavenderblue 

It is amazing what a forum can do. Before yesterday I thought I had used up all my options now I am on a new tack and i am sure it will solve my problems.

Thank you for sharing your ideas.

Good luck with your sewing I hope it also solves your problem. 

Together we are so much stronger.

Let me know how it goes.

Nette

Member

Re: prosthesis with textured back - anyone had problems?

Am on a roll here ....lol

This was the first page I read ...

https://community.breastcancer.org/forum/82/topic/754464?page=3

Love to hear how you get on , will let you know what happens with my trials !!
Hugs
Jill xx

Member

Re: prosthesis with textured back - anyone had problems?

Nette here is an url for a page all about making your own boobs

http://mastectomysolutions.com/sew-your-own-breast-forms.php.

It is quite interesting to read this whole set of articles too

http://mastectomysolutions.com

Hope they might help
Jill x

Member

Re: prosthesis with textured back - anyone had problems?

Hi Jill

Thank you very much. All the very best.

Nette

Member

Re: prosthesis with textured back - anyone had problems?

Hi Nette here is the url for the soft pellets

http://www.tinkerbellcreations.co.uk/tendertouch-babyfat-69-p.asp.

They are soft pellets for doll or teddy bodies .......

The site I used for the material was this below
http://janhorrox.co.uk/collections/doll-fabrics-faces-and-bodies-1/products/flesh-half-metre-units

I haven't actually used this material before , so it will be experimental ...but I have used the soft pellets before and they are amazing .
Hope this helps .
Hugs
Jill x

Member

Re: prosthesis with textured back - anyone had problems?

Hi Lavenderblue 

I have tried knitted knockers as I can sew but not knit. I have had two kk both have been huge and notat all suitable. I think I may have been unlucky because others speak well of them. I will try the doll making Web sites for the material and wait for you to let me know the link for the pellets. 

If you like you can use the messaging service on this site.

I am thinking I will get a friend to make a pattern out of muslin and go from there.

NetteW 

Member

Re: prosthesis with textured back - anyone had problems?

Hi Nette ,

I bought my pellets at a teddy bear fair , but you can buy them on line . I will check the web address for you and let you know , they were about £10 for a kilo bag . I have also just sent off for some stretchy flesh coloured material today , used for doll bodies . I plan to take a pattern adapted from my bean bag boob and have a go . I googled making your own prosthesis and found a few sites with tips and hints .
I also have a pattern from Knitted Knockers , but that makes a perfectly round boob ...which mine is not !!
Hugs
Jill x

Member

Re: prosthesis with textured back - anyone had problems?

Hi Lavenderblue 

What a brilliant idea. If you make dolls making a boob to suit you should be a doddle. I think we have to help ourselves. Where do you get the rubber pellets?

NetteW 

Member

Re: prosthesis with textured back - anyone had problems?

My consultant did suggest that I could have a reduction , but I would rather have another mastectomy to be honest and told him so . He did say that it was too soon to think of either at the moment , ( probably because my prognosis is not that good !! )
So for the moment I am stuck with a false boob of some sort . No one seems to sell the one I am interested in , which is a TrueLife Bodycool Wave Teardrop form .
I will ring Nicola Jane and see what they say about the possibility of ordering it .
I am also thinking of making my own form Nette , using soft rubber pellets that I use to make dolls' bodies with...softer and quieter than micro beads ...don't rustle . LOL . I have a Bean a Boob and that is the right sort of shape ...just too firm ..doesn't droop enough . So I might use that as a pattern and try it out .
Will let you know how I get on .
Hugs,
Jill xx

Member

Re: prosthesis with textured back - anyone had problems?

Hi Lavenderblue

I am so sorry to hear about your woows. It is horrid to not be able to get it right. Have you asked to have the other side removed? Have you asked about having a reduction on the remaining boob? My remaining boob is a reconstruction and was big. When I went flat the otherside after chemo and radiotherapy I had a reduction. For me it was more complicated but with a quick recovery. My plastic surgeon said it was the first recon reduction but it was a fairly common operation when ladies were left with one large breast. I would give it a try. I am sure you know we will never be the same again we just have to make the best of it. 

Before you buy any more forms is there any chance you could get to a Nicola Jane or Amoena shop. I think they also hold sessions at the bigger units. Ask you breast care nurse or at your nearest cancer centre. Finally maybe if you are very big and droopy you might be able to either yourself or a friend could make you a form. I am thinking of doing this using a squashy neck pillow filled with micro beads.

I hope some of this helps. 

NetteW 

Member

Re: prosthesis with textured back - anyone had problems?

I am in total despair with prosthesis in general !!! Just wish I could have the other boob removed so I could be flat chested !!
The silicone prosthesis they gave me from the hospital is awful .... I don't know why I let them persuade me it was what I needed . It is huge , too big , pokes out of the sides of my bra and totally unwearable , not to mention the weight !!!
I have spent a fortune trying to find something that is vaguely wearable ,weighted foam ones , swim ones , you name it ...I have tried them ....no use any of them . I can't seem to find anything that matches my remaining boob , which is large , G cup , but droopy . Long gone south , so only fills bottom half of my bra cup....top area is none existent . LOL

I am wondering if anyone has tried a teardrop shape prosthesis .....and if this will solve my problem ? Will it droop like my poor old boob ?

Hugs,
Jill xx

Member

Re: prosthesis with textured back - anyone had problems?

Hi All

Just to add my ten pennies worth. I never go without a bra as I have a D cup recon. At night and evenings I wear a pull on bra from Sainsburys. I find them soft with loads of stretch. This means the recon is supported and it adjusts to the flat side. It will even take my weighted foam softy although it does ride up sometimes. I think you can get a similar bra that has a bit of foam padding, so a pocket, which you might be ablemto fit a softie into. The hospital sofie which is filled with just soft padding is not In my opinion much use for everyday use. The Nicola Jane foam weighted sofie on the other hand is brilliant. 

Lavenderblue, I was going to suggest that you could be allergic to silicone but others got in before me. I would suggest you try a swim prothesis as I don't think they are made from the same material but I don't know if they do partials. I would suggest you contact the two customer service depts they are brilliant either by phone or email.  Good luck NetteW 

Member

Re: prosthesis with textured back - anyone had problems?

Thanks for the info on Nicola Jane Somerset , I have been sent the cat. and did order a ' Been a Boob ' . It is much better than the softie from the hospital as it has some weight to it and so is more like my remaining boob .

I saw some bra extenders on Amazon and have found they are a boon . I am using them with my old bras so that they are very loose round the body . I use the bean boob when I go out and when at home I take the left strap off my shoulder and roll the whole left cup down so that nothing touches my scar . Not perfect but more comfy than all the soft bras I have bought which hurt round the armpit . I guess we are all different .LOL .
Hope everyone is keeping well .
Hugs,
Jillx

Member

Re: prosthesis with textured back - anyone had problems?

Hi Jill

Sorry you are having such problems. Nicola Jane just sent me their new catalogue. Noticed a note saying that in addition to the catalogue they offer more sizes and styles including up to 52 band size and up to K cup size - they suggest calling them and they will do their best to find something suitable. Might be worth a try. I don't have your problem but I have found Nicola Jane very helpful and they do have a good range. I did try the Been-a-boob mentioned below - did not work for me but I can definitely see that would be good for larger sizes as Lolly says. Best wishes - hope you find something which works.

Member

Re: prosthesis with textured back - anyone had problems?

Did send for the Bravado seamless silk , but sadly far too small in the cup for my remaining boob ! Will have to return . Shame as the material was nice and soft . So am back to the never ending problem of poor choices for gals with big boobs !! Really depressing as I am in such pain with my scar .
Hugs, Jillx

Member

Re: prosthesis with textured back - anyone had problems?

Thanks for the tip Lolly73 , that sounds worth looking at . I have the same problem with the softie , it looks really stupid as it has no weight to it and my remaining boob was a J cup before this all started .
After my WLE and radiotherapy in 2009 , my left boob shrunk to half the size , so they did give me a shell ,which I was never happy with and rarely wore . I even dug this out and tried that in my softie , but it is still not right !! Seems us big boobed gals have real problems !!
Hugs xxx

Member

Re: prosthesis with textured back - anyone had problems?

Hi, I couldnt wear my softie as it would ride up and looked stupid.  I cant wear my silicone one as i cant stand it touching the scar area as too tender. I cant go without a bra as my other side is a D cup, and with 2 children, didnt want to look different and remind them of whats happened.

 

My answer... the Been-a-Boob from Nicola Jane £30. Its got the right amount of weight, its cool, it moves naturally, u can swim in it, and most of all it doesnt sit on scar area.

 

Worth a look x

Member

Re: prosthesis with textured back - anyone had problems?

Thank you everyone for your hints. I will look into the bras you suggest . I have a 20 inch scar from my back up to and encroaching into my right boob for a couple of inches . The most painful part is round my left arm pit and this is where I have the problem , the straps on the soft sleep bras that I have bought hurt as they have no boob weight to pull them down !
When I try to wear the softie that the hospital gave me it just rides up and irritates the scar . I am trying to not wear a bra for most of the time , but feel I need to wear one when I go out .

Member

Re: prosthesis with textured back - anyone had problems?

Definitely not having recons.  Flat and Fab sounds fun - but I am not on Facebook.  If I decide to join Facebook I will definitely have a look!  

Member

Re: prosthesis with textured back - anyone had problems?

Somerset, if you are not having recon, come and join our Flat n Fab group. I have put a link further up the page x
Member

Re: prosthesis with textured back - anyone had problems?

Jets, come and join our Flat N Fab group, I have put a link at the top of the page x
Highlighted
Member

Re: prosthesis with textured back - anyone had problems?

Hi ladies.

 

For any of you who have had either a single or double mastectomy and aren't having recon, we have a great UK group, with lots of chatter, advice and support. Some of us go flat and some wear prostheses. It would be great if any of you would like to join us. Here is a link to our page. Hope to see you there. Gill

 

https://www.facebook.com/groups/flatnfab/

 

Member

Re: prosthesis with textured back - anyone had problems?

Hi Lavendersblue,
I had a lump and some nodes removed rather than full mx but the op zone was near the middle of the breast. After lots of googling I found a number of women recommended Bravado seemless silk. I found it really good post op and through radio/post radio. It has a wide soft underband which really helps. Only comes in sm, med, large and ex large and is only intended up to D cup but if over that and you size up its okay and still v good to see you through. Is back fastening which can be a factor early on. Available from John Lewis plus fig leaves online plus I'm sure other suppliers.
Hope you find something which works for you at this stage.
Seabreeze
Member

Re: prosthesis with textured back - anyone had problems?

Hiya Lavendersblue

 

I wore a soft bra immediately but only for short periods.  to be fair i am post reconstruction and can wear M & S Adored bra with shell prosthesis.  I work 3/4 days and on the days im not in work i wear a soft bra with knitted partial (knitted knockers).  I dont think i could wear Bra everyday and i put on soft bra in the evening whilst in the house.  I am still uncomfortable now 7 months post reconstruction.  It sounds like your surgery was more involved.but hoping things pick up for you soon and you're able to get out and about with not too much pain.

 

 

Gilly

Member

Re: prosthesis with textured back - anyone had problems?

I had a radical mastectomy on 13th Jan , but am in such pain that wearing a bra is agony . How long do most folks have to wait until they feel comfortable enough to wear a bra and prosthesis ?
I have angiosarcoma directly caused by my radiotherapy treatment for breast cancer in 2009, and had to have my chest muscle as well as my left boob removed . My problem is my remaining boob is not small , so going braless is not really an option .....any suggestions .

Member

Re: prosthesis with textured back - anyone had problems?

Thank you. Just checked the knitted knockers website and they do partials too!

Just been informed by a fitter that she has never seen such a skin response as mine to wearing a prosthesis...she reckons I may be allergic to silicone...even through a layer of cotton! Great! Not!

Papermache! 3d foam cutting? Cuddly toy...(front of an angry bird!) Haha...

Member

Re: prosthesis with textured back - anyone had problems?

Btw - my knitted knockers arrived last week and I love them - much nicer then the softies provided by hospital although I'm going out completely flat at moment x
Member

Re: prosthesis with textured back - anyone had problems?

Wow Butterfly,

 

What an amazing find & what a great name - Knitted Knockers,,,, am sure I would have opted for one of these - but will soon be having matching surgery, all being well. Will definately see if my BCC nurse at hospital knows about this option.

 

Great post, thx

 

Lexilou x x

Member

Re: prosthesis with textured back - anyone had problems?

Evening Ladies

 

I used Amoena partial prosthesis befre reconstruction and currently just using a shell from Trulife.  I guess i am fortunate the cupbaord at the unit i go is full  and the Prosthesis Nurse great so have been offered good solutions throughout.  One thing i did have when i had a full prosthesis is a knitted knocker with some weight in.  Google knitted knockers.  Excellent alternative in summer and very comfortable.  Just another option.

 

Take Care  Gilly x

 

 

 

 

Member

Re: prosthesis with textured back - anyone had problems?

Hey Seabreeze,
Sorry for the delay I just gound your question here... (i dont think i am usong the forums in the most efficient way) .
for me, i have pain and firmness within the treated side , recently saw my surgeon who said this is normal following surgery and rads, rads finished in sept. Had recent scan of this breast, awaiting results, but informally was told likely tp be seroma and fat necrosis due to treatments. At this stage scanner felt biopsy was not required, as a treated area this is my new normal. Surgeon did say to keep gently massaging to reduce firmness .
My new normal is taking some adjusting to, and have to admit have not used the prothesis recently, but do dress to disguise deficit.
Have also private messaged you seabreeze.
Member

Re: prosthesis with textured back - anyone had problems?

Lexilou,
Thank you for sharing...I'm going to ask if its normal to get indentation or if it just means the product's still not right. Did you find it hurt after 3 hours or so of wearing, I don't mean the skin but actually within the reduced breast?
I'm wondering if I just need more patience before rejecting it!
Seabreeze x
Member

Re: prosthesis with textured back - anyone had problems?

Hi all,

I had WLE with reduction style reshaping of the affected breast, which has left me lopsided currently. (The surgeon said he can reduce the other side to match in due course as radiotherapy can reduce WLE side a little more). I am pleased with the resulting shaping - though have some lumpiness within the reformed / treated breast, and was fitted for an amoena partial prothesis. At the fitting this went from trying chicken fillet styled prostheses to more full breast shaped prothesis.

I find wearing it helped with confidence in the summer, but it was heavy and sweaty against my skin - surgery scars & rads. Bra fitting is not good on the treated side currently, and options are to wear the prothesis & have sweaty uncomfortable skin, or have a bra which doesnt quite do the job for either breast! Situations dictate how often the prothesis is worn & confidence needed at that time. This prothesis does leave a crisscross pattern on my skin.

Not sure if this helped - I will be opting for the reduction of the other breast in due course.

Good luck ladies, much love & confidence to be happy with your choices / fittings. x x

Member

Re: prosthesis with textured back - anyone had problems?

Thx Somerset x super helpful x
Member

Re: prosthesis with textured back - anyone had problems?

Hi Jets

I did not want reconstructions either - as you say that makes it rather important!  Like so many of these issues I think it is another where everyone is different - which is probably why everyone says try a variety.  I had heard good things about the bean bag type prostheses and lots of people clearly love them. However when I tried them I did not like them at all.  Hopefully your hospital will offer you a choice of silicone ones - they are expensive so I hope they would provide these.  I started with silicone and still very happy with them, especially if I want to look really smart or want to wear the pocketed strappy top I found!  I got the foam ones (which are much cheaper) initially because I wanted something lighter/cooler for summer weather - they are really comfortable though so I often wear them in winter now, especially if doing exercise etc.  You can also get weighted foam if you are worried about them riding up but I did not find this was a problem for me. Good luck with your fitting. I hope they give you lots of help finding something which works for you.

Member

Re: prosthesis with textured back - anyone had problems?

We do indeed seabreeze! We do indeed!
Member

Re: prosthesis with textured back - anyone had problems?

Jets,
I reckon it must be harder re a partial prosthesis since its trying to match 2 curves, the inner and outer.
Never occurred to me amount textured back. We live and learn!
Seabreeze
Member

Re: prosthesis with textured back - anyone had problems?

I seriously don't think I could face recon and this is a big deal for me - the leaflets aren't that helpful as not much about pros and cons of different types x why is everything so hard with cabcer?
Member

Re: prosthesis with textured back - anyone had problems?

Sorry you did not get more replies.  I have Nicola Jane lightweight foam prostheses and Trulife silicone ones, both of which work for me - but I tried a couple of other types which were uncomfortable so did not go for them. Neither of mine has a lattice structure but not sure if this is because they are full not partial or because the manufacturers have a different approach.  Might be worth looking at both their websites - I just looked at their partial prostheses online and some don't seem to have the lattice structure which is obvious in pictures of the Womanzone and Amoena ones. You could try asking them which partial prostheses, if any, don't have the lattice - maybe your hospital would then consider getting something specifically for you if you identified it and they don't have it? I am sure something will work for you - just hope you find it quickly as it is no fun being uncomfortable.

Member

Re: prosthesis with textured back - anyone had problems?

Hi,
Amazing, my post has had 177 hits and only 3 responses!
Not sure whether that's saying loads of other women have had problems or are seeking answers! Or there are lots of women too scared or reluctant to post messages (if that's you please join and post!)

Thanks to Jets, Somerset and June for responding.
I tried 2 different sizes of a prosthesis from Womanzone and with both ended up with diamond lattice indentation which really hurt. Both looked a good fit and felt ok for the first few mins.

Then tired an amoena prosthesis with a fairly smooth back (only about 3 grooves) and had a similar problem. For a couple of hours until it started hurting I was able to wear a normal top and felt really good! I'm not aware of still being swollen from radio over the entire area...But again it's started hurting so back to the hospital, again.....

I think this is a real post code lottery, from a bit of research it appears some hospitals have huge cupboards with a vast array of shapes and sizes in stock and others, unlike where I started....where it's a case of old mother Hubbard...with a bare cupboard or only basics for those who have had a full mx and none or 1 if you are lucky of shells, worst still for partials.

Hopefully the next one....something out there must fit me surely!

Seabreeze
Member

Re: prosthesis with textured back - anyone had problems?

I've my first prothesis appt at hospital in March - people say try on variety but I don't know if it's common for all trusts to offer multiple choices? Thx for the original post as it makes me more aware of possible issues tondiscussv
Member

Re: prosthesis with textured back - anyone had problems?

Hi Seabreeze

 

Here is a link to the publication that Somerset mentioned  http://www2.breastcancercare.org.uk/publications/treatment-side-effects/confident-choice-breast-pros...

 

Best wishes

June, moderator

Member

Re: prosthesis with textured back - anyone had problems?

Hello  Somerset

 

Welcome to the forums. 
Just to let you know we have a helpline should you want any support or practical information, the free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.

 

Best wishes

June, moderator

Member

Re: prosthesis with textured back - anyone had problems?

Hi Seabreeze

Can't help with partial prosthesis specifically as I need full prostheses but I do sympathise with difficulty with fittings and as nobody else seems to have replied I hope this may help.  I did not really have any advice from hospital and not measured so when I could move on from softies I needed some help! Luckily I got some great help from one of the commercial suppliers - some of them have shops and do fittings.  I found one with a shop I could get to - they were listed in the BCC publication on clothes and prostheses and I then looked at their website and called them before visiting.  I have now been back several times - brilliant staff at the two of their shops I have visited. They advised on sizes and let me try different prostheses (and pocketed bras etc). This was really useful to me as I find it hard to work out whether something I see online is going to fit/be comfortable - and there are lots of different types of prosthesis so hard to know which will work.  I avoided buying something which sounded good online but when I tried it did not suit me at all. Ended up with prostheses I am happy with.  Maybe BCNs are restricted in what they can offer you so if you can it might be worth looking at the BCC publication and trying elsewhere.

Good Luck!

Member

prosthesis with textured back - anyone had problems?

Anyone else tried one of these and been left with what I can only describe as an apple piecrust diamond lattice imprint all over the residual breast, which hurts.
My understanding was it should help with air circulation and cooling not make be look like a lattice and an irritated pink itchy one at that!
Not sure if the size of the partial prosthesis is wrong or if they just don't tend to work....
Any advice or comments appreciated...I suspect I may be driving bc nurse mad but if I'd ever been measured properly or able to try on more than 2 I may have been sorted!
Any comments appreciated.
Thanks Seabreeze