HelloI'm 15 months post DMX and lymph node clearance on one side - no chemo or radiation. I'm doing very well and amongst other stuff, I'm working hard on my lymph system, which is in a bit of a mess! Trying to mitigate the risks of lymphedema.I wear compression stockings daily, and am wanting to get a compression top - long sleeves - like a long sleeved cami with pockets for the prostheses. I'm trying to avoid wearing the sleeves - I'd rather be in a full top, especially for the winter. The complication is that it needs to be plus sized :-)Does anyone know where I can find something like this? I've spent ages searching and can't find anything that meets all my needs / wants and I'm hoping that someone has already found one.Many thanks!

Hi @Kristen. Hello. I can't thank you enough for all your ideas - you're an absolute gem. My scars are all looking very good, thankfully - surgeon was very happy at the 12 month check up.

Excellent, always best to be prepared. I’ve had lymphoedema (left arm) for over ten years, with a good therapist and the right sleeve it’s very manageable and causes little problem. But just like cancer, avoid if you can!Best wishes.

I am not a therapist, do see one if you haven't already. But sorry I don't think I have ever seen much like that that covers full upper body and arms.It would be too hard to put on if it was proper graduated compression all over and since you don't have lymphoedema of arm and trunk/chest it would be overkill. I do see the lipoedema ladies often wear separates e.g. two separate sleeves, vest, high top leggings/pantyhose or tights and bike short type compressions in various combos. But they are ladies with lipoedema.Proper medical grade graduated compression of trunk and arms for people who need it - my first thought is brand Second Skin. They do custom. I have a lymphie friend who has a few times had trunk compression made by them, but she keeps the arm sleeves as separate so as to have more options and flexibility to don, doff and mix n match items but it helped her with trunk odema. www.secondskin.com.auI think there may be some compression sleeve in various brands who do across upper back and both arms connected- would be hard to put on.There are tummy and back ones with no breast coverage. some with upper arm, they are more for post for cosmetic surgery. eg not aussie but just to show you what i meantwww.recovapostsurgery.com/arm-and-back-compression-vest.htmlLot of the cosmetic industry related items have many weird type compression garments. But I don't think your looking for proper medical compression if your only at risk of. But either way they all have to be purchased through a lymphoedema therapist as they are all medical devices. Any thing proper compression is regulated.Remember compression is only one part of the puzzle. You are early days, and its great you are learning and trying to prevent it. Not everyone gets it. You haven't had radiation so that lowers you risk, but yes higher body weight and node removal does cause risk. Do try and see a therapist and get a Ldex score and monitored if you haven't already. Do learn from reputable sources like BCNA webinars. ALERT and LAA, not 'wellness' sites. Be alert but not alarmed and invest your time into quality self care and healing.Lymphoedema can be managed - its not the end of the world if it happens. I've been wearing compression for over 15 years. Its fine, my arm is not huge.Then there are garments that are not medical grade compression, more like active wear and may have knobs inside the fabric to help massage skin and maybe encourage lymph flow. They are not as firm, not graduated compression or as fitted, often more stretchy and there are sporty type products that are just firm and fitting for some low level support.Maybe you are thinking of those things marketed to sports and often lipedema community, not lymphoedema? Do check out Lipedema Foundation for clues.Aussie Podcasts like The Lipoedema Podcast and other lipedema sites, there maybe ladies there who may be more into compression tops for their upper arms and body.Other ideas but not exactly what you are looking for Amoena Liane singlet tops only goes to 3xlElastiqueathletics are trendy overseas, they have body suits with long sleeves but not large sizes.Some suppliers pages you can explore:- https://www.garnetmedical.com.au/default.asp- https://tynor.com.au/products/i83-compression-vest-sleeveless?_pos=7&_sid=a5cb096cb&_ss=rbilateral light sleeve, not graduated compression- https://www.solidea.com.au/product-category/lymphoedema-and-lipoedema/- https://solideaus.com/products/solidea-active-massage-compression-braless-top- https://www.opchealth.com.au/juzo- https://www.jobst.com.au/If you are at risk, but do not have lymphoedema, you really only need a round knit arm sleeve/gauntlet of low grade compression. If you have chest swelling then investing in a compression bra like haddenham prarie wear may be more beneficial for you and use of your resources, the Prima has the most coverage and goes up to a 3xl -123-132cm above chesthttps://hadhealth.com/hugger-brasIf I think of anything else I will come back and post it here and on my Fb page.But sorry I don't know of any full all over tops that are firm fitted in plus size. Shape wear maybe..?

Hi @kristen. Thank you so much for all the info - I really appreciate it. I think I'm probably looking for a unicorn! My 'dog ears' are a bit tender when I wear a bra, and I've got a Liane cami and I love wearing it - it just doesn't work too well with the dog ears. It's actually the garment that made me think of a full skivvy like top. I'll have a good look at all your suggestions and see if I can find something. I'll also follow your FB and Instagram - they look to be full of great information and I'm looking forward to learning more. I don't have any issues at the moment - physio is measuring things and is happy with how I'm progressing. I've just started compression boots and that's making a difference and it seems to be getting the lymph system moving and I guess I'm trying to support that process rather than needing medical grade garments. And yes, I probably need to look at lipedema sites. I can't thank you enough - you've been very kind and generous with your information. With best wishes. Kim

This blog post popped up today and I thought of you.I don't know if Wear Ease has an Australian distributor: https://www.thecompressioncloset.com/beat-the-heat-with-our-cool-compression-camisole/PS, do work on desensitising your scars, hopefully your breast care nurse has explained that to you.

Lymphedema - compression garments

14 Replies

Kristen
Member
2 years ago
I have been lymph learning as a consumer for a long time. I do already have lymphedema thread in community pages where I post main events and info about big information days for LAA etc.
I also have a Facebook page where I love to collect lymphie stuff, separate to my breast cancer support group page. Heaps of searchable content there. Video links, webinars and much more.
Lymphoedema Lymphatics Stuff
Sutherland Shire Breast Cancer Support Group
KimF
Member
2 years ago
Hi @arpie. Hello! Hope you're well! You're right - Kristen's info is amazing. I've copied it into my notebook so I don't lose it. I'm having monthly sessions with a lymph specialist and there are no signs of problems yet. I am also doing quite a bit of work on my overall lymph system (which needs work!) and I was hoping that the compression garments would help support that process and I'm sure I'll now find something suitable.

And yes, I think it would be a great idea if @Mez_BCNA could set up a separate group. Lymphoedema has been one of my biggest worries and it's been difficult to find knowledgeable specialists. I also think general lymph health is something that we should also pay attention to, and trying to learn about that has been an extensive series of rabbit holes! Still not sure I'm on the right track!

Thanks everyone for your input!
KimF
Member
2 years ago
Hi AllyJay. Thank you so much - I hadn't thought about looking at garments for burns - great idea. I'll have a look.
KimF
Member
2 years ago
Hi @Kristen. Hello. I can't thank you enough for all your ideas - you're an absolute gem. My scars are all looking very good, thankfully - surgeon was very happy at the 12 month check up.
arpie
Member
2 years ago
@KimF I was lucky & didn't get lymphedema or cording .... some terrific info here tho - @Kristen's info is GOLD!!! And a great idea to check out the burns compression garments, @AllyJay xx

After my surgery, at my first 'checkup' - part of my 'team management' was seeing a Lymphedema specialist who explained the massaging techniques and 'signs' to look for ..... she also did a massage on me too.

A buddy in Vic has really bad lymphedema in one arm - the whole arm is more than double the size of her normal arm - but I think she is resigned to it now .... not sure if she wears compression gear - always in long sleeves ... but the hand is a give away.

@Mez_BCNA - I think those with lymphedema and/or cording really deserve their own Private Group, as it is such a specialised area - where they can share photos & techniques/solutions & info (and Kristen's post here could be STICKIED at the top as it has such valuable links!) They are both severe, ongoing side effects of BC & any new info & techniques would be added as they become available .... what do you think, girls?
AllyJay
Member
2 years ago
I do know that compression garments are used by burns victims to reduce scarring. I googled "compression garments burns", then clicked on "images" and a long sleeved, full torso compression garment was shown. Might be worth a look. There are also sites for custom made garments. Good luck.
Kristen
Member
2 years ago
This blog post popped up today and I thought of you.
I don't know if Wear Ease has an Australian distributor: https://www.thecompressioncloset.com/beat-the-heat-with-our-cool-compression-camisole/
PS, do work on desensitising your scars, hopefully your breast care nurse has explained that to you.
KimF
Member
2 years ago
Hi @kristen. Thank you so much for all the info - I really appreciate it. I think I'm probably looking for a unicorn! My 'dog ears' are a bit tender when I wear a bra, and I've got a Liane cami and I love wearing it - it just doesn't work too well with the dog ears. It's actually the garment that made me think of a full skivvy like top. I'll have a good look at all your suggestions and see if I can find something. I'll also follow your FB and Instagram - they look to be full of great information and I'm looking forward to learning more. I don't have any issues at the moment - physio is measuring things and is happy with how I'm progressing. I've just started compression boots and that's making a difference and it seems to be getting the lymph system moving and I guess I'm trying to support that process rather than needing medical grade garments. And yes, I probably need to look at lipedema sites. I can't thank you enough - you've been very kind and generous with your information. With best wishes. Kim
Kristen
Member
2 years ago
I am not a therapist, do see one if you haven't already. But sorry I don't think I have ever seen much like that that covers full upper body and arms.
It would be too hard to put on if it was proper graduated compression all over and since you don't have lymphoedema of arm and trunk/chest it would be overkill. I do see the lipoedema ladies often wear separates e.g. two separate sleeves, vest, high top leggings/pantyhose or tights and bike short type compressions in various combos. But they are ladies with lipoedema.
Proper medical grade graduated compression of trunk and arms for people who need it - my first thought is brand Second Skin. They do custom. I have a lymphie friend who has a few times had trunk compression made by them, but she keeps the arm sleeves as separate so as to have more options and flexibility to don, doff and mix n match items but it helped her with trunk odema. www.secondskin.com.au
I think there may be some compression sleeve in various brands who do across upper back and both arms connected- would be hard to put on.
There are tummy and back ones with no breast coverage. some with upper arm, they are more for post for cosmetic surgery. eg not aussie but just to show you what i meant
www.recovapostsurgery.com/arm-and-back-compression-vest.html
Lot of the cosmetic industry related items have many weird type compression garments. But I don't think your looking for proper medical compression if your only at risk of. But either way they all have to be purchased through a lymphoedema therapist as they are all medical devices. Any thing proper compression is regulated.
Remember compression is only one part of the puzzle. You are early days, and its great you are learning and trying to prevent it. Not everyone gets it. You haven't had radiation so that lowers you risk, but yes higher body weight and node removal does cause risk. Do try and see a therapist and get a Ldex score and monitored if you haven't already. Do learn from reputable sources like BCNA webinars. ALERT and LAA, not 'wellness' sites. Be alert but not alarmed and invest your time into quality self care and healing.
Lymphoedema can be managed - its not the end of the world if it happens. I've been wearing compression for over 15 years. Its fine, my arm is not huge.
Then there are garments that are not medical grade compression, more like active wear and may have knobs inside the fabric to help massage skin and maybe encourage lymph flow. They are not as firm, not graduated compression or as fitted, often more stretchy and there are sporty type products that are just firm and fitting for some low level support.
Maybe you are thinking of those things marketed to sports and often lipedema community, not lymphoedema?
Do check out Lipedema Foundation for clues.
Aussie Podcasts like The Lipoedema Podcast and other lipedema sites, there maybe ladies there who may be more into compression tops for their upper arms and body.
Other ideas but not exactly what you are looking for Amoena Liane singlet tops only goes to 3xl
Elastiqueathletics are trendy overseas, they have body suits with long sleeves but not large sizes.
Some suppliers pages you can explore:
- https://www.garnetmedical.com.au/default.asp
- https://tynor.com.au/products/i83-compression-vest-sleeveless?_pos=7&_sid=a5cb096cb&_ss=r
bilateral light sleeve, not graduated compression
- https://www.solidea.com.au/product-category/lymphoedema-and-lipoedema/
- https://solideaus.com/products/solidea-active-massage-compression-braless-top
- https://www.opchealth.com.au/juzo
- https://www.jobst.com.au/
If you are at risk, but do not have lymphoedema, you really only need a round knit arm sleeve/gauntlet of low grade compression.
If you have chest swelling then investing in a compression bra like haddenham prarie wear may be more beneficial for you and use of your resources, the Prima has the most coverage and goes up to a 3xl -123-132cm above chest
https://hadhealth.com/hugger-bras
If I think of anything else I will come back and post it here and on my Fb page.
But sorry I don't know of any full all over tops that are firm fitted in plus size. Shape wear maybe..?
Afraser
Member
2 years ago
Excellent, always best to be prepared. I’ve had lymphoedema (left arm) for over ten years, with a good therapist and the right sleeve it’s very manageable and causes little problem. But just like cancer, avoid if you can!
Best wishes.