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Topic: Prophylactic Mast./no nodes/is that still a risk

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: May 15, 2006 11:47AM

samon wrote:

I'm sorry if this is a repeat question. I tried to access posts from last year, but I could only go back two pages since they updated this website.

I'm just getting anxious because I need a tetanus shot on Friday and I know I'm going to face opposition from the doctor and nurse as to where to give me the shot. I had Bilat. Mastectomy (one side prophylactic) with only one sentinel node removed on the cancer side. The prophylactic side had no nodes removed per the doctor and my path report. All the doctors that I see (breast surgeon, GI doctor, GYN, and general Prac. think it is unnecessary to follow any precautions on the prophylactic side since I had no nodes removed. I want to believe them, but I'm worried. I did have a BP taken a few weeks back on that side when I went to the GI doctor. They all think I'm being too worried and think I can treat my left arm as if nothing will happen. I don't know what to do. I almost feel like skipping my tetanus shot because I hate to deal with this. I'm not sure what I'm going to do in a few years when I need to get annual colonoscopies (for another condition) because my GI doctor does not believe in any risks from LE. I will need an IV every year when I have the colonoscopies and I don't think they will be willing to do it anywhere but my arm.

I have read the lymphedema web site and they always mention precautions for the arm "at risk". My question is, if I didn't have any nodes removed on the prophylactic side, is that still considered an "at risk" arm. Log in to post a reply

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May 15, 2006 12:34PM DoreenF wrote:

Good question ... and I don't know the answer. I'm sure Binney or Npat will be along soon - and they'll know the answer.

It's really surprising how many people in the medical field dismiss the risk of lymphedema ... or understand the impact that it has on your life if you do develop it. I think that if they experienced it themselves - or someone close to them did... that the attitude re: risk and precautions would be changed! (at least I hope it would...)

Hugs,
Doreen
"Cancer May Leave Your Body, but It Never Leaves Your Life" - Lance Armstrong Foundation Manifesto. Dx 4/18/2005, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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May 15, 2006 02:08PM cowgirl wrote:

hmmm I have a hard time believing they didn't take lymphnodes because you have breast lymphnodes that as they scoop out the breast come also. Maybe Binney knows more but I have a dent where my lymph has been taken from.

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May 15, 2006 03:04PM 2up wrote:

no need for "le" precautions on prophy side.......i'm in the same boat!
prohpy masts are "simple" (how ironic)masts which clinically translates to no axillary node removal......axillary dissection is what lends to complications.
hope that helps!
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May 15, 2006 03:51PM catgirl wrote:

After my bi-lat (one side prophylactic) there was no precaution on the "good" side. In fact they were careful not to do any bp or iv in the cancer side. I dont think you have risk of le as long as no nodes were removed on that side. Most likely you would know it, too. I am going through physical therapy right now on my "bad" side because I have lots of pain in that arm and very limited movement.

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May 15, 2006 04:13PM Binney4 wrote:

Hi, samon,

Reading through all these answers you can see there's considerable controversy on all this. My LE started on my prophylactic side, so you can guess what my position is on all this.

The problem is that node removal is a risk, but so is slicing around on our chests. The lymph vessels are damaged/destroyed by mastectomy (in fact, by lumpectomy as well), not to mention that those remaining can be cut off by scar tissue, which in this case is considerable. In fact, both men and women who suffer trauma to their chests (as in a car accident, for instance) can and do develop LE in their arms (and/or upper body) with no nodes removed. In the same way, any abdominal surgery (or trauma to the leg or lower body) can result in leg LE. Since most doctors of any stripe don't know much about the lymph system, it's no surprise that our requests for special consideration sometimes fall on deaf ears.

This is just another one of those questions where we get to weigh the risk for ourselves and make our own decision. But the guff you're getting from your medical team is simply uninformed and, frankly, not especially compassionate. This is your arm, and it's the rest of your life. I happen to hate LE very, very much, so obviously I would only recommend that you stand up for yourself on this. As for your GI doc, you can try educating him with print-outs from the National Lymphedema Network <www.lymphnet.org> (which are, by the way, written in medicalese by a host of very medical board members.) And you can try reminding him that his mission as a physician is "first of all, do no harm." Or failing that you can simply insist, which I've had to do. They do cave, but they may make you mighty uncomfortable in the meantime. So it's your call.

Does that rot, or what?!
Binney
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May 15, 2006 04:21PM rhymeee wrote:

Chest LE.

Son was wanting me to fly down and so I called some organization to see if they thought I should get a sleeve as a " preventative " for the mast and axillia side. While talking to this woman, she told me there was even such a thing as chest lymphedemia. I seem to remember her saying it was because there were nodes taken on the chest where the breast was. Havent done any reading on this though.
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May 15, 2006 04:55PM Binney4 wrote:

For sure, rhymee. Many of the women here have chest/breast LE (it's called "truncal LE"), and I do as well. There are recent research results out of Scandinavia showing that chest LE is a growing (but waaaaay under-recognized and under-diagnosed) condition following lumpectomy with radiation. Meanwhile, our surgeons -- who were really hopeful that the SNB procedure would eliminate post-bc-treatment LE -- are very slow to recognize the condition, and way over-estimating the success of SNB in preventing LE. Which is why so many of us hear from our doctors that we have nothing to worry about, and why so many women in the LE support groups are dumbfounded to find they've developed it.

The "to sleeve or not to sleeve" issue with air travel is yet another controversy, rhymee. The National Lymphedema Network has a Position Paper on Air Travel that you can access at www.lymphnet.org .

Hope you have a great trip to see your son!
Binney
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May 15, 2006 08:27PM rhymeee wrote:

Binney,

Sorry to hear of your LE. I have known a few with LE and they say it is very painful. Seems like we go through quite enough.

Thank you so much for replying to me!

Appreciate the link and will check it out for sure.
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May 16, 2006 04:15AM samon wrote:

Thanks everyone for all your replys.

Binney, I do feel worried about LE and some days I get quite angry that the medical community dismisses it so much. I was angry that no one told me that there could possibly be a risk on my prophylactic side. I'm not sure if I would have made a different choice though. From what you just posted, it seems like I would have had a risk no matter what I chose.

I had cancer on one side and chose the mastectomy with one sentinel node removed (no rads). Prophylactic on the other side. My other option was lumpectomy with radiation on cancer side and I was told that I would have needed a reduction (major from DDD to C) on the left side if I didn't do the prophylactic. So if I understand what you wrote, I guess I would have had the same risk on both sides even with my other options. To me the breast reduction would have been as major as a lumpectomy. I have been reading that radiation can also be a big risk. But it seems like no mater what option I would have taken, I would have had a risk. Every time I need to go to the doctor I fear the fight about the BP cuff and and shots or blood draws. I was suppose to get my cholesterol checked last year and have not done it yet becasue I don't want to deal with the fight I know will happen if I ask for it to be done on my foot. All the medical people I deal with feel the prophylactic side has no risk at all.

I just feel like this is never going to be over. Everyone (family and doctors) feel like once the mast. surgery is over and I am healed that I should be back to life as normal. I'm not sure what they think "normal" should be becasue I don't feel normal coming anytime too soon. Every time I do something that is on the list of "don't do this" list for LE I get worried that I will get LE. I can't get back to my normal life when I'm suppose to follow everything on that LE risk list. Before Christmas I cut my finger on a broken bulb from the Christmas lights and I burst out crying. I would have never worried about it before.

I really appreciate all your advice and I'm so sorry that any of you have to deal with LE.
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May 16, 2006 04:51AM ddd wrote:

So, now I'm worried that I'm getting myself in a fine "fix" too. Chose bilateral prophylactic mastectomy coming up in July, hoping in part to avoid complications like LE further down the line. I already have serious rheumatoid arthritis, receive SQ injections twice a week in alternating arms, and need blood drawn every two months. I have all kinds of weird sensations that pop up now and then with the rheumatoid arthritis, (tingling, swelling,aching, weakness). I will never be able to tell if the next time it's LE instead. I am extremely active, lift, pull, push all day long. The things that make my life worth living involve extreme use of my upper extremities. If I have to live like an invalid, then life is not worth living for me. So, now to I forego the prophylactic mastectomy? But in February I had an excisional biopsy, and the surgeon(not the one who will do mastectomies) did an awful lot of damage that shouldn't have been necessary - so I probably am at risk of LE anyway? I just want to quit this life most days.

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May 16, 2006 07:07AM Binney4 wrote:

samon and ddd,
I truly do understand your frustrations with this. But LE is not cancer -- no contest there. Doing all we can to destroy the bc beast is the first order of business, and it's also a statement of triumph over those bouts of despair we all face as we go through this. DO get the best treatment you can for the bc -- that's today's problem.

As for the possible tomorrows, you are smart to be aware of the possibility of LE, but the thing you need to keep in mind is that there is treatment available if it develops, and with proper care the risks and inconveniences of LE can be reduced to nearly normal. ddd, since you are active and use your arms a lot, it would be worth the effort to see a well-qualified LE therapist for base-line arm measurements and for instruction in self care. She can also fit you for garments to use as a prevention when you're going to be active and stressing your arms. All these things help and can give you the peace of mind you need to get on with life as fully and richly as you did before. A therapist can also help you differentiate between the swelling and tingling of arthritis and that of LE. An experienced therapist knows how to feel the lymph fluid under the skin and may even be able to teach you to do so as well. Here's a web site that links to lists of qualified therapists (there is no standard of therapist education mandated by law as yet, so you want to make sure the one you see is well-qualified. For details about that, see the article called "LANA is Important" at www.lymphnotes.com or the National Lymphedema Network's Position Paper on Therapist Training at www.lymphnet.org ). Anyhow, here's the qualified therapist list:
www.mylymphedema.com .

samon, I know the feeling of now having to view a paper cut as a major life event. Some of us keep a tube of antibiotic with us so we can wash and treat any skin breaks. Yes, it's an added nuisance, but it can prevent and infection that could lead to trouble, and it can give you a measure of control you don't have otherwise.

Like everyone else (family, friends, the medical folks), we too would like the bc journey to be just a dim memory, but in many ways it never will be, LE or not, as so many of our sisters on the Moving Beyond board prove every day. The bc diagnosis might have been a disaster, but prevention of further problems is just smart, on-top-of-it thinking.

If either of you need help with the nuts and bolts of getting bp on a leg, blood tests in your foot, or avoiding IVs when you're doing "procedures," there are lots of posts on here about these things, or just ask and many others will no doubt share their experiences. Unfortunately, like everyone else, we lost some valuable threads in the web site "black-out", but we're all still around here to answer any questions you have.

Wishing you a sense of returning power and control as you tackle life after bc. This part is doable, I promise!
Binney
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May 16, 2006 09:55AM AmryAnn47 wrote:

Samon,
When I had my colonoscopy last October, I went in with my "bad" R arm wrapped. Because you have to lie on your L side, they did my iv in my ankle, worked like a charm. In fact, the charge nurse thanked me because she said she had been concerned about which side the mastectomy was on because she knew she couldn't use that side.
I have been greatly blessed that all my DR's & their staffs are up to date about LE, I just wish I could find a well trained LE therapist to go along with all their knowledge since there seems to be a lack of WELL TRAINED therapists in the SA area.

I had originally planned to do a prophylactic mast on the L side because I had ILC which had not shown up on mammo, but decided not to after all the LE problems I have had on the R side (at least for now).
Mary Ann Dx 4/11/2011, ILC, 1cm, Stage IV, Grade 3, 5/10 nodes, mets, ER+/PR-, HER2-
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May 16, 2006 12:19PM ddd wrote:

I live in a third world country, there will be no specialized therapist available to me. I am honestly rethinking this prophylactic mastectomy. I have suffered all my life with horrible chronic illnesses, don't want this kind of life. I'd rather just quit now.

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May 16, 2006 03:29PM Binney4 wrote:

ddd, Third Wold country or no, you can certainly get access to specialized therapy. Because LE is a huge problem in other parts of the world (and especially in tropical Third World countries), your situation has already been planned for and provided for. There are complete care videos available from the National Lymphedema Network (and I believe another set is offered by BandagesPlus). These teach and demonstrate every aspect of LE therapy and self-care. And besides that, there are therapist listings for many remote parts of the world, and I have personally accessed several of them (their email addresses are posted) to get help for women in India and China. They have been more than willing to help by long distance. With the videos and someone to guide you, you'll have everything you need to get through the learning curve (should you even need to -- LE is not guaranteed, you know!)

So, yes, I can see your point, and especially your discouragement. But nothing about treating LE is in any way invasive -- there are no drugs to throw into the mix, no surgery, no new doctors. This is doable, and if you need to, you can do it. Besides, we're all here to share the journey.

I wish we hadn't lost all our files here when the board was down for maintenance, because there were a couple of threads started by women as discouraged and scared as you are (me included -- took me a long time to start to cope with this). All of them "graduated" to knowing the self-care routine they need to maintain their health. If it should ever be necessary, you can do it too.

But, ddd, the immediate problem isn't lymphedema at all -- it's your very understandable discouragement with the future (or even with the present). I don't know how to help you with that, because cyberspace is the pits for the nitty-gritty of pitching in and caring for one another in concrete ways. I know you are in pain, and sick of fighting for pain relief, mobility, and motivation. I wish we could sit down and share a cup of tea, some tears -- maybe even some laughter. And I so hope there's someone there with you who can do some of that for you. But whether there is or not, you're not alone.

Sending prayers for a few joyful surprises in your life for a change -- and plenty of cyber (((((((hugs))))))),
Binney
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May 16, 2006 05:58PM Jennifer wrote:

Just wanted to add that you can get a tetnus shot in your hip, I did when my acat scratched me on my arm on the prophylactic side. I also called a head of time for an IV in my foot when I had my colonoscopy. They said they would certainly give it a try. That's all I ask.

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May 17, 2006 02:50PM jinky wrote:

Hi Everyone, I didn't realize i could get LE in my prophylactic mastectomy....no nodes taken but i hear you.....so i will have to be careful with hangnails etc on my so called good arm.....it never stops......
I also went to town without my sleeve and my LE arm swelled a little so after this i will just not wear my sleeve at home at rest.....oh i hate LE.....hugs jinky
age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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May 17, 2006 03:09PM Binney4 wrote:

Bummer, Jinky! Still, I try to keep reminding myself that we're mighty fortunate to have the LE garments -- lots easier than wrapping all the time. Or swelling all the time.

As for the prophylactic side, it's not a bad idea to have a sleeve and glove for that side so that you can use them for air travel or any strenuous activity to help prevent LE. They last longer than the the ones we use for LE that's already developed, because you don't have to wear them all the time.

This stuff gets awfully pricey...
Binney
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May 18, 2006 04:37AM ddd wrote:

All I know is I cannot stand to live with constant worry and fear and panic. It will kill me. If I go ahead with this prophylactic bilateral, I will not change what I do or how I care for my arms. I lift up to 60 pounds several times a day. My arms get bumped, bruised, scratched. I also do repetitive arm actions. I sat down to my computer this morning, somehow a mosquito got in the house last night, and I got bit at least 6 times on one arm. I can't douse myself with insect repellent all day and all night, I am allergic to everything. I keep most of my body covered except for my arms when it is unbearably hot. My whole reason for the PBM is to get back to a normal life and not worry. Not that living with rheumatoid arthritis and chronic pain is exactly normal. I have tried so hard to do preventative things all my life, I have worked so hard to take care of my body all my life. Nothing ever seems to work anyway. For example, I now have my occasional drink twice as often as before-obviously denying myself little pleasures in life didn't get me anywhere. And that is the attitude I am now taking with everything else. If I am going to get lymphedema, it will happen whether I take every precaution or not. That's just the way life always works for me.

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May 18, 2006 02:20PM jinky wrote:

Binn did you have any nodes removed on your prophyactic?
Thank you for the idea of wearing a sleeve on my good side if i do strenuous activity. I would never think of that.
I am very very lucky i don't have to wear anything at night....i did wrap my hand today and it went right down.....i think you just have to go with it....wrap sometimes.....LE garments etc.
I feel i am in control of LE now but i know tomorrow that it could change and i am not taking it lightly.
Thank you so much for all the help....LE hugs jinky
age 2, grade 1, 4 chemo, 5 yrs tamoxifen, femara 48mts, preventative mastectomy 2005 Dx 4/30/2002, ILC, 2cm, Stage II, Grade 1, 1/11 nodes, ER+/PR+, HER2-
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May 23, 2006 02:14PM sherry7 wrote:

ddd, its easy to read between the lines of your post and see and feel your pain. Hon, if you do not have LE at this point why torture yourself by worrying about something that is not a problem yet. RM is a horrible thing on its own, let alone BC and concerns about LE. Be kind to yourself. It would be great if you could do some counciling I am concerned for your repeated comments. Life can be overwhelming at times, limitations, pain, identity issues and so on. But life is a great gift, start appreciating it one little bit at a time. Smell a rose, watch a butterfly, take a warm bath with lovely candles. There is life after BC and LE, I am searching for it myself as we speak. Breastcancer.org has a chat room that is very helpful for BC survivors as well as LE.
Be well and good to yourself. Blessings, love and light, sherry
let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 27, 2006 01:18PM Sige wrote:

This is probably a stupid question, and I am sorry if it is, but here goes anyway:

I sleep on my left side, with my arm up under my pillow/head. This is the side that I have had a surgical biopsy on, and the side that I will be having a SNB & lumpectomy on June 5. I have really been enjoying sleeping on my left side (since I wasn't able to since I was healing from my prior surgery) and I know I won't be able to sleep that way for awhile after surgery.

Sorry so lengthy, but question is this: If I have only 2 nodes taken out on my left side, as well as the surgery, am I risking LE by "compressing" my arm under my pillow/head??

If so, I will switch sides of the bed with my partner now and start getting used to sleeping on the other side.

Just one more thing I never really thought about...thought the risk of LE was only when you have NO nodes...??!!??

Peggy
"Religion is about creation, and for that reason religion should be about the earth." - Laurie Cabot Surgery 3/25/2006 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 4/3/2006, DCIS, 1cm, Stage I, Grade 3, 0/22 nodes, ER+/PR+, HER2- Radiation Therapy 8/1/2006 Breast, Lymph nodes Hormonal Therapy 9/22/2006
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May 27, 2006 02:12PM Sige wrote:

AARGH...and does that mean no backpacking??? Jeez! And is the fact that I've had a surgical biopsy already putting me at risk?

I'm not one to worry before I need to worry, but I've seen a lot of posts that say "I wish I had followed the advice before..."
"Religion is about creation, and for that reason religion should be about the earth." - Laurie Cabot Surgery 3/25/2006 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 4/3/2006, DCIS, 1cm, Stage I, Grade 3, 0/22 nodes, ER+/PR+, HER2- Radiation Therapy 8/1/2006 Breast, Lymph nodes Hormonal Therapy 9/22/2006
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May 29, 2006 11:21AM Sige wrote:

...killed that post pretty effectively...

"Religion is about creation, and for that reason religion should be about the earth." - Laurie Cabot Surgery 3/25/2006 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 4/3/2006, DCIS, 1cm, Stage I, Grade 3, 0/22 nodes, ER+/PR+, HER2- Radiation Therapy 8/1/2006 Breast, Lymph nodes Hormonal Therapy 9/22/2006
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May 29, 2006 03:02PM NPat wrote:

Peggy,
About changing sides when sleeping... I have LE in my left arm and prefer my left side when sleeping... I tried various positions and made myself miserable... so now I don't worry about what side I end up on... I just make sure I have my night sleeve on and close my peepers. Habits are hard to break. I would avoid any elastic sleeved gowns or PJ's. As far as back packing, make sure the pack evenly distributes the weight on your shoulders and back... not binding your arms and no underwire garments... they pinch off lymph flow also. I wouldn't stop what you enjoy... we need some quality of life but be vigilant.
Pat
NPat
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May 29, 2006 05:41PM sherry7 wrote:

NPat, I may have asked you on another thread. Should I be wearing something on my arm at night. I have heard of wrapping and you mentioned above your night sleeve. The more I learn here the more I am convinced the real knowledge on this subject exists only here. How do we know when we need more garments? Do we wait til our body does something else? Love your opinons. Sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 30, 2006 03:04PM AnnaM wrote:

ddd: I hope you have someone to talk to; you are having a hard time and need encouragement. My heart hurts for you.

samon: I share your frustration with doctors/medical personnel. I haven't encountered a single one who takes my concerns seriously. It is only here that I feel heard. I don't know what I would do if I didn't have Binney and NPat's postings to help me hold onto my determination to do everything possible for myself.

As for the sleeping question: I had bilateral mastectomies with SNB in September of last year and tried to sleep only on my back for the longest time. Now I do sleep on both sides and on my back. You can't give everything up. You have to give yourself whatever comfort you can. What we have sacrificed already is a lot, right? We can't sacrifice our sleep.

I wish I were 20 and really smart. I would go to medical school, become a doctor, specialize in LE and become a world leader in teaching doctors to hear women's concerns about this issue. Sure it isn't life-threatening, but quality of life is pretty important as far as I'm concerned, and I don't want to sacrifice my quality of life to somebody else's ignorance and stubborness.

Sorry, I ranted, didn't I?

Anna
Bilat. MX + DIEP 9/2005, 0/9 nodes and 2/2 nodes; IDC,
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May 30, 2006 05:15PM NPat wrote:

Sherry,
A certified LE therapist will determine if you need compression at night. My LE is aggressive and I was massaged and rewrapped daily for 6 weeks. The garments that were ordered did not fit right. Big mistake, I got them on a Friday... wore them all weekend and by Monday, my arm and had had blown up again. We had to start all over for another 6 weeks of massage and wrapping. Finally, I got custom garments that have controlled the swelling. My therapist told me after the first fiasco that I must use night time compression. Many of the gals wrap themselves and do a great job. Fortunately, my insurance pays for a night garment that is like a fancy egg crate mattress tube and two compression sleeves that slip over it (with a little tugging). I look like half of the Michelin Man. The egg crate padding forms lymph channels that drain the lymph at night. When I first saw the selection of contraptions my LE therapist recommended as options... I wanted to cry and couldn't imagine sleeping in one... but you learn to make yourself as comfy as you can. I do not need to wear chest compression at night for the truncal LE as long as I wear a very supportive, tight, nonbinding bra during the day. If I notice more swelling, I wear the bra at night. I am not faithful with the massage... I must admit but I am compulsive about wearing my garments. This website shows all the garments. The opera shown is what I wear.
http://reidsleeve.com/opera.htm

Anna, I agree with you... we need quality of life... don't we? Yeah, if I were 28 instead of 58, I would go to med school also. I have made some headway with my doctors in treating LE and everyone except the surgeon has referred patients to the LE therapist. He still thinks LE is a "normal" side effect of breast surgery... sigh... I try to speak to as many groups as possible about LE and have made some headway with nurses but we have to get the info to the providers that make the referrals. I am a reformed dummy about LE. Too bad that I had to get it in order to learn... God knows how stubborn I am... Sigh...

Pat
NPat
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Jun 24, 2006 07:19PM Janicelee wrote:

ddd,
I'm sending you some positive thoughts. You sound so down and discouraged. This is so tough and deciding on more surgery is always hard. I hope that you have a friend or family that will hold your hand while you sort things out.

Sige,
I went backpacking a couple times last summer. I found that making sure the pack was weighted evenly helped. Also, you can widen the cushion on the straps by sewing on extra padding from the fabric store. I used the inserts that one would use in a swim suit. Very attractive!! I also found that taking a couple thin "blue ice" pads helped. At night or at lunch, I'd put them in a river or a lake, then stick them in a clean sock and put them under the strap of the backpack, in my bra and tucked in the side of my bra.
Sometimes you can find flat and skinny blue ice pads. They worked well.

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