Lymphedema before BMX...so scared

Randi64

HI all, I apologize in advance for long post...

I was dx in November with IDC and had SNB with removal of 4 lymph nodes. I am having my last round of chemo tomorrow after 20 awful weeks! I am scheduled to have BMX on 4/19.

I was told nothing about lymphedema risks after surgery and feel like I brought this all on myself . I feel so stupid as I have been a nurse for almost 25 years!  I bathed, I lifted weights, I stretched my arms over my head right away, etc. I feel so bad that i brought this on myself. I feel like I was pushing my body into the lymphedema.

About 2 months or so after surgery I noticed my affected hand and thumb were swollen. I immediately showed my oncologist who gave me an rx for PT. I  had to wait about 5 weeks to see the therapist. She looked at my thumb as said "maybe you have tendonitis, this is so mild!". I also have lots of tenderness and she stated to me "lymphedema causes no pain!" When she measured me there was a noticeable difference in thumb and area around it. She then agreed it was early LE. She saw me four times, each time saying this was probably "overkill" and then discharged me. She had me buy a glove from Isotoner which did not help at all. Six weeks have passed since I saw her and I have had to call her several times. I now have wrist swelling! My wrist is about 1cm bigger than the other. She told me to buy a sleeve. I got measured at the retail store for a Jobst gauntlet and glove. I wore them once for 3 hours, felt good while it was on. When I took off the sleeve I was noticeably more swollen! I called her yesterday and she said to come in tomorrow for her to see gauntlet and sleeve on me. She did teach me MLD on lower arm which I do every day,several times a day.

I am so nervous about all of this as I haven't even had my BMX yet! Please help me with any suggestions before surgery. My forearm and top of hand are constantly tender. I feel like everyone has been calling me and congratulating me on end of chemo and all I have been doing is fixating on this darn LE!  Thank you in advance for any help...Randi

Nordy

Randi - I am probably going to state the obvious here... but it is time for you to get a new therapist. Really. The fact that she was so flippant about your swelling... the fact that she told you to "go buy a sleeve" and did not have you come in for measurements to see progression... the fact that she said, "Lymphedema causes no pain", when we all know that it can and does. I am sorry that you were not referred to a quality LE therapist. I don't know how far you are from NYC and LI, but if you want a really, really good LE PT, I would send you to Bonnie Lasinsky at Lymphedema therapy in Woodbury. There are others on here that live on the east coast, so maybe they can help refer you to someone that has your best interests in mind. AND, do not beat yourself up!!! Please do not! LE happens... unfortunately some of us are more prone to it than others... and I am a LE trained therapist (although I never really specialized in it after my training - mostly did acute care and orthopedics) - I KNEW all the precautions and I STILL got LE. So please, please, please, give yourself a break. Find a good LE therapist that takes the time to listen to you and is on YOUR side. And ((((((hugs)))) to you. Hang in there.

Randi64

Nordy, Thanks so much for responding. She is the only LE therapist in my area. I am far from LI and about 65 miles from NYC. I looked today and saw there is a lymphedema center about 1hour 15 minutes away. Do you think I should go before my BMX or wait until after? I had weird feelings about her, but feel so vulnerable right now that I didn't trust my own instincts! About giving myself a break...it' so hard right now,but thank you!

Binney4

Oh, Randi, yikes! I'm so sorry your having to go through so much scarey chaos. Is IBC a typo (I hope!), or do you mean you now have IBC in addition to the IDC?

Randi, if you already had swelling in your thumb, then a gauntlet was the wrong garment to suggest -- it will push any swelling into your thumb and fingers, so don't wear it again until you get good help.

And speaking of good help, perhaps you want a second opinion from another well-qualified lymphedema therapist? I'll just suggest a few other questions for a second opinion. First, lymphedema is frequently tender and even painful, so that was not an accurate statement. Then too, Manual Lymph Drainage massage that only treats the arm is not going to be effective -- the MLD routine begins with clearing nodes in the neck, axilla, and groin, and then gradually moving fluid from the chest, shoulder, upper arm, elbow, lower arm, and finally the hand, in that order. Trying to force it from your lower arm without treating the neck, chest and upper arm gives the fluid nowhere to go, so it will only become congested higher up on your arm.

What might be more effective, until you can get that second opinion and some training in wrapping (with special bandages) and proper MLD, is to elevate your arm as much as possible (when watching TV, riding in a car, on pillows at night), and to stay VERY well hydrated (it dilutes the lymph fluid so it moves more easily). Here's how to find a well-trained lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Randi, lymphedema is tough all by itself -- you sure as heck don't need to beat yourself up about it too! None of this is your fault, nurse or no nurse. I teach lymphedema in-service to nurses in hospitals, oncology practices, and NP nurse grad courses, and I have yet to find a nurse who was aware of what lymphedema is all about. They are ALWAYS amazed to discover how little they actually know about it, and most of them are angry they didn't know, because it's just not taught in nursing programs or medical schools. Hopefully that's changing, but it's slow. Maybe it'll help if you remember that YOU didn't cause this, your breast cancer treatment did. Nobody can outsmart LE, and it sure isn't a do-it-yourself project either. We need good information and good help, and both are unfortunately hard to find. 

Here's information about LE and surgery:
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm#GUIDELINES_FOR_SURGERY

You can do this! Please tell us how we can help. Gentle hugs,
Binney

Binney4

Oops! Didn't see Nordy's response while I was typing, and see we're both in agreement here. By all means go see her before the BMX -- it'll make you feel so much calmer to get good help. Sorry it's such a long drive, but a good therapist is worth gold. Call before you go and make sure she's someone who will address your concerns -- this is an important relationship.

Keep us posted!
Binney

Randi64

Binney, Your response & Nordy's really touched me. I was feeling really alone. Yes, it was a typo ,I have IDC. I am going to call for a new therapist after chemo tomorrow. I will get a new prescription from my oncologist. I am stunned as she told me how important it was to do the forearm MLD The four times I saw her she did do my entire body but did not do any instruction except hand me a piece of paper which explained the hand and forearm. Thanks for all of your knowledge! Randi

kira66715

Randi, one more reference that may help, the National Lymphedema Network has position papers on treatment, training, exercise, air travel.

Even well trained (135 hour course) therapists can not be optimal--but some therapists just take weekend courses, and their knowledge base is scanty. 

Here is the link to the page of the position papers:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

Randi, please don't ever blame yourself for any ot this. I'm also a health care provider and I find that when I'm a patient, there's some assumption that I don't need information--and that's just not true. After my surgery, with no post op instructions, I did a few things that increased my lymphedema risk, and knew I needed help and had no idea how to access it--the women on this board gave me the knowledge I needed to get the help I needed.

Let us know how you're doing. Just because we can take care of patients doesn't mean we don't need care and guidance, and knowing some medical stuff doesn't mean we can figure this all out for ourselves, and we shouldn't have to--IMO.

You're not alone.

Kira

Nordy

Binney - LOL, Yes, we were definitely in agreement, but you worded your response so much... nicer than I did... LOL! I am going to blame it on all those years I spent living on Long Island, that I just don't know how to sugar coat anything... Or maybe it is just my personality... LOL

kcshreve

Besides getting the care and support you really do need now, it is a good idea to have instruction as to how to proceed through your surgery, given your current LE.  I had 2 subsequent surgeries after my bmx.  There are options and ideas regarding wrapping, elevating, etc, which I'm sure a good LE therapist can walk you through.

Estel

Randi64 - I can't add any more knowledge than these wonderful ladies have already given you ... I just want to give my support, love, & prayers.  As we all know, "LE causes no pain" is BS.  I knew I had a problem when my fingers were swollen, really hurt and wouldn't go down.

Much love to you!  We're here for you and these ladies really know what they're talking about!

 {{{{hugs}}}}

Suzybelle

Hi, Randi:

I am so sorry you are having to deal with this, and even sorrier that you have no help - I echo Binney, Nordy and the rest of the lovely ladies - you need another therapist, preferably one who is not such a moron.  Honestly....LE doesn't cause pain?????? 

I got le after a bmx (no recon.) in Feb. 2010, and I was devastated.  I was 40 years old and was not ready for any of this.   I think the le diagnosis was harder to deal with than the cancer, and I blamed myself too - it's just easier to blame someone.  Then I blamed my surgeon, and then I decided I was done with the blame game.

Life is good - and although it seems really bleak and scary right now, there is life after a cancer diagnosis, a bmx, and even le.

I will be thinking and praying for you.  Please hang in there and let us know how you're doing.  Last year was so hard for me...it sucked on a major basis.  But it got a lot better.  It just took some time.

Hang in there, Randi!

Suzanne

Binney4

LOL! Nordy, when I read your post I was grinding my teeth wishing I could be as direct and clear as you are! (Well, you and Suzybelle too: "preferably one who is not such a moron" -- love it!)

How's the puppy, BTW?
Binney

Nordy

Binney - he is on my lap right now! Curled up and sleeping. I hope he doesn't get too big that he won't be able to sit here as I love having him cuddle on me! He is still a little mouthy - will start puppy kindergarten in a couple weeks, but he is also so smart. He will sit and down mostly on command and is learning to play fetch. The kids and I are also teaching him to 'dance' on his hind legs and jump through the hula hoop! He is so much fun. Thanks for asking!

Randi64

Hi all, Thanks so much for all of your support. It means so very much to me! I finished chemo today and feel really great about that. I told my oncologist about the referral he gave to me and that the therapist needed more education. I did call a recommended LE treatment center which is about 45 minutes away. They said there was a 10 person waiting list but that they would evaluate me before surgery. I will be seeing them on Tuesday morning! I will let all of you know how it goes.

Nordy- I have 2 dogs.. 1 is 7 pounds, the other is 85 pounds and they are best friends. Good luck with the puppy!! My children were the ones who wanted the dogs, yet I believe I get the most joy from them!

I wish everyone a wonderful night! Randi 

Binney4

Randi, sounds good! Brava for telling the onc about the therapist -- they can't know unless we speak up. I know one doctor who told his patients not to bother with lymphedema treatment because it did no good -- but in fact it was because the therapist he referred them to didn't know what she was doing! Once he found another therapist to refer them to he was amazed at how well his patients did.

What a difference you have in dog sizes! It must be so funny to see them together. Very neat!

Please let us know how your visit goes next week. Really great that they can get you in for an eval before your surgery. Whew! Gentle hugs!
Binney

Suzybelle

Randi - great news!!!!  Let us know how it goes.  So glad you got rid of the nutty therapist!!!!! 

Estel

Randi - Yes, great news!  Also ... CONGRATULATIONS on finishing chemo!  That's huge!  Sounds like a pretty good day! 

 Keep us posted on how your evaluation goes!  Blessings & love to you!  xo

Nordy

Randi - Hurray on getting a new therapist! I know it is a ways to drive, but a good LE therapist is worth their weight in gold (which, I understand right now is pretty pricey!).

kerrie389

Randi,

I am a nurse too and i also think i did too much and maybe bought the lymphoedema on myself.

I have just completed the Lymphoedema  therapist course and have learnt soooo much about my condition and how to treat it and treat other women.

The main thing i learnt was that early intervention was crucial for long terms benefits.

I had intensive therapy for a month which included massage, exercise and most importantly.. bandaging. They reduced my arm by 50% and i have just recently been able to go without wearing a glove .

Early intervention is crucial because you are preventing the lymphatic vessels from becoming overstretched to a point where there is no possible return to a normal stat... a bit like putting on so much weight and the skin is overstretched  and cant return to normal and loose skin is left behind after weight reduction.

Educate yourself and get immediate intensive therapy.

Email me if you ever want to chat about anything.

I have been told that if i am very compliant with my own therapy i may get rid of this sleeve in time. I will always have it for exercise , air travel and any high risk events... but i am very hopeful.

Randi64

Hi all,

I hope every one is enjoying their Saturday! I have been staring at my swollen wrist,thumb and hand and trying not to obsess over it! I am very anxious to go to the new therapist on Tuesday. I am hoping she can help me feel more at ease before my surgery on the 19th.

I just wanted everyone here to know how much each post has meant to me. It makes me feel like Im not going crazy over this! I think my family thinks I should be more grateful to see the end of chemo and that I'm on to the next stage of treatment, it's just hard to feel great with this darn arm!

I will educate myself as much as possible, but I am relying on this board for support...thank you from the bottom of my heart!! Randi

Nordy

Randi - Unfortunately, your family will never quite know how it feels to be you... If you know what I mean. Sometimes people would actually say to me, "Well, you should be glad that you are alive." You know, they don't understand that we ARE happy to be alive, but seriously, why can't we be alive and NOT have lymphedema?! I really don't think that is asking too much! Maybe you just need to print them out some information on lymphedema and hand it out to each person that says something stupid to you. (really I looked for a better word, but in my state right now that is all I could come up with!)

Marple

Randi, family (friends) just aren't able to understand the scariness of LE.  Until one has had LE one has no idea the impact it has on our lives.  We're all with you here.  Gentle hugs.

(Edit to say, posted at the same time as Nordy who said it SO much better.)

Nordy

LOL, Sharon... I have diarrhea of the mouth... LOL... or fingers since I am typing here...

Randi64

Good morning all,

I went to new LE therapist yesterday. She seemed much more informed than my previous therapist(not too hard). She thinks I have between stage 1 and 2 LE, although I only have mild swelling. There is a 5% difference betwen 2 arms, including hand. The majority of swelling is thumb and wrist. She did say upper arm measured slightly bigger as well. I showed her my small Jobst compression sleeve and gauntlet. They are 20-30mm/hg. It is comfortable but I get increased wrist swelling. She meaured me and said I measure a small. She told me to purchase new sleeve and gauntlet at 15-20mm/hg. I will see her 4 more times before surgery to do MLD and to relieve some cording in left arm. No wrapping before surgery, it's too ovrwhelming for me and she said I may be helped a lot with what she will do . What do you all think about the idea of less compression helping?  I have not purchased yet as they are not returnable at the local medical supply store.Thanks, Randi

Marple

Randi, it sounds like you are moving in the right direction with this therapist.  I wonder if you should be going to a fitter to purchase your next sleeve though.  Having said that........I think less compression is better than too much which may be why you've experienced swelling with the sleeve and gauntlet you have now.

Good luck.  Others with more knowledge than I will be along soon.

Hugs.

Suzybelle

Hi, Randi:

I have had LE since April 2010 and wore compression garments every day up until about 2 months ago, when I quit them totally (except for housework, gardening, etc.) and am now doing 24/7 kinesio taping.  I also wrap every night after using a flexi-touch machine.

I am doing much better without the compression garments. I'm not condoning this or endorsing it for anyone else, but it seems to really be working for me.  My LE therapist (who is awesome!!!) says that some women just don't respond well to compression, just like some don't respond well to the kinesio taping.  I am very thankful that the taping seems to really be working for me.

I think you just have to experiment with what works best for you.  PM me if you want more info!!!

Randi64

Good afternoon all! I had my third session with my new LE therapist and I really am happy how it's going! I have reduced the swelling in my arm and hand without bandaging! I am doing MLD the proper way now and I am wearing new compression garments, a sleeve and gauntlet which are very light compression at 15-20mm/hg. I still have a bigger thumb and wrist,but they have gotten smaller. My affected arm overall is now smaller than the other. I have BMX on Tuesday so hoping swelling stays down. Therapist says I should put sleeve and gauntlet right after surgery. thanks for all the support. Randi

Suzybelle

Great news, Randi!  I will be thinking about you and sending prayers your way.  Just please remember...it gets easier.  I had a bmx over a year ago and it was tough...but I got through it, and so will you. 

 Hang in there and make people wait on you.  That will lift your spirits.  Kidding...sort of. 

Nordy

Hurray! Good luck with your surgery!

Binney4

Randi, thinking of you -- it'll be good!
Binney