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Topic: my story

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

Posted on: Jun 22, 2006 02:04PM

jinky wrote:

In 2002 i had bc,2cm ductal and lobular, had left mastectomy, er/pr+++,1 node micro,had 4 chemo.
In 2005 i had preventative mastectomy....no nodes taken.
In 2004 i lifted a small tv thinking i had the weight on my so called good arm.Within a few hours it really swelled and i put on my preventative sleeve i had for flying.
It went down and for the next year i wore the sleeve if i did anything heavy.
Never swelled again until 2005 i decided to begin knitting those scarfs (new hobby).
Well i have arthrits in most of my joints so when my knuckles all swelled and turned red and my whole hand swelled i thought it was my arthritis.It was arthritis but also lymphedema.uuugggggggg
I never thought of getting a glove for 3 weeks.
I then noticed my arm was swelling to.
Got glove and came here to this wonderful board where everyone encouraged me to go for treatment.
I now have my arm under control and i can get my hand normal if i wrap it.
When i wear my glove with a swell spot it goes down 90 percent of the way.
I don't wear anything at night and my arm stays down and my hand swells a little.
I feel i am doing well and know if i wrapped more it would probably be better.
I intend to do that but right now i am wering my sleeve when needed and glove 16 hours a day.
Thought you might like to read this and i would love th hear other stories. LE hug 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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Jun 22, 2006 03:00PM ShirleyHughes wrote:

Jinky, I went to a new therapist today. When my LE started I only measured 3 cm difference on bad side. Today, yea!, the new therapist measured only 1 cm difference. I was told I had truncal LE. However, she doesn't think so.

I loved my "old" therapist (had been released) but wasn't quite sure if she was "up" on things. My new therapist showed me how to self massage. I will be getting a sleeve for protection especially when I'm active. Will have a glove that goes right past the knuckles on my hand for flying. She told me to exercise my hand while flying.

So far mine is mild. I want to keep it that way. She also gave me the does and don'ts and be carefuls most of which I learned on this board thanks you Binney, you and others. Anytime I get the tiniest scratch on my affected arm I wash it and run for the antibiotic ointment and bandaid. I think we need some neat LE bandaids. LOL
Shirley
God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference
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Jun 22, 2006 03:05PM DoreenF wrote:

yeah ... neat LE bandaids and bandages with butterflys... to chase the LE away... wouldn't that be pretty ?
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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Jun 23, 2006 05:50AM inspiewriter wrote:

yes, we need pretty colors and prints!!!!

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Jun 23, 2006 08:39AM rrs wrote:

I read in current Time magazine about a new resistant staph infection (not in hosptials) - Now people without LE need to be careful, too. We're ahead of the game - at least that's one positive outlook for us albeit slightly twisted. Another positive thing from having LE is that I've met wonderful women on this site. Here's to us!

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Jun 23, 2006 10:19AM Binney4 wrote:

Jinky, I'd love to hear other stories too!

So here's mine: Diagnosed with ILC in left breast in February, '01. Opted for a mastectomy to avoid rads, which scared me to death. Tumor too close to the chest wall, so I did rads anyway. Lots of crazy recurrence scares later, and a couple of excisional biopsies on the right for lumps that could be felt but not seen on imaging, and I finally opted for a prophylactic on the right in early '04 (turned out there were a couple of areas of LCIS in that breast as well). Had seromas that needed to be drained, and the pain in my chest never seemed to go away. Then my right hand swelled when I crocheted too tightly for too long. All of which was diagnosed as arthritis and some other strange condition apparently known as "learn-to-live-with-it". When my hand swelled up like a balloon on a flight from Phoenix to Sitka, AK, there was finally some concensus among the medical team that indeed I had LE. But they were still unclear about what to do for it.

Being a wimp, I was no good at living with it, so started on a long seige of my insurance company headquarters. Seven months later (!), after an appeal to which I attached some 35 pages of educational materials about LE for the benefit of the ignorant appeal hearers (who are required by law to read all attachments to appeals -- heh,heh!), I finally got coverage approved for LE therapy. Yes! Did 20 treatments, asked millions of questions, and learned to wrap and massage. Six months later my left arm swelled following a low-blood pressure emergency in which the blood pressure cuff was applied to my left arm. Having already learned the massage and wrapping, I kept in touch with my therpist by phone and email but managed the therapy myself.

Well, not without a lot of blubbering. I find LE a highly emotional experience -- still -- and am flabbergasted by its invisibility in the medical community and its near-invisibility even in the bc-awareness community. Blows me away. Which is why it's such an obsession with me.

We bc ladies with LE are not (unfortunately) alone with this. There are thousands of people with primary LE, some of whom have had swelling since childhood, others who developed it out of nowhere in their 30s or 40s. They are even less understood than we are and often go YEARS without being diagnosed. They are instead accused of being obese (hello? obese legs?) and/or offered diuretics, which don't work, meanwhile suffering through constantly hardening fibrotic tissues and multiple bouts of cellulitis. None of which does anything to cool my obsessive tendencies.

Okay, enough! Any other stories?
Binney
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Jun 23, 2006 11:18AM andys wrote:

I think most of you have heard my story many times - but here goes.
Diagnosed with BC in July, 2002 - multiple lesions in different quadrants so mastectomy with TRAM recon, SNB with additional node "sampling". Also had chemo, but no rads. My post-mastectomy therapist was also a certified lymphedema therapist - she felt it was unlikely I'd get le, but did educate me.

Fast forward to December, 2003 - getting out the XMAS stuff, scraped my knuckles. I cleaned, ointmented, etc. but a few days later, my hand was puffy.

I'm one of the lucky ones, my surgeon immediately wrote me an order for more visits with the le specialist. Learned bandaging, massage, reduced the swelling by 50%,got discharged. A few months later, bruised my forearm and everything swelled up even worse than before. Went to a new therapist who added exercise to my prior routine and discharged me after 4 visits. I was pretty much 100% compliant with wrapping at night and when I flew, wearing compression during the day, doing massage and the exercises but the lymphedema was stubborn - it would move into my fingers, up my arm, you name it. Started swimming during the summer of 2004 and saw some improvement, but still couldn't do without wrapping and bandaging. Fast forward to summer 2005. All of a sudden, I can go without bandages for a day or two except when I am exercising or doing other risky stuff. Wrap whenever I fly and only 1 or 2 nights a week otherwise. Look completely normal. I feel so fortunate.

Oh, and I found a lymphedema support group - some folks with primary, some bc patients with arm and chest, some men and women who had different cancers that required removal of lymph nodes in the groin area so have le in one or both legs. Another reason I feel fortunate - I can cope with the arm, but I don't think I'd be able to handle the leg.

Well, that's my story.
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Jun 23, 2006 11:24AM DoreenF wrote:

OK... Here's mine....
Diagnosed with stage 1 IDC in the left breast in April of 2005 - had a lumpectomy and SNB - one node removed... at the followup surgery appts my surgeon acknowledged that my breast was swollen still and he'd check it again at the next appt - at one point he suggested sending me somewhere for gentle massage ... (I had no idea that he suspected LE ...). I skipped chemo ... at the inital rad onc appt the rad onc noted that my breast was swollen and conjested and had a bit of heat - he prescribed an antibiotic to rule out infection ... started rads towards the end of June ... over the 4th of July weekend I felt a heaviness and burning in my arm - near my armpit and elbow that just wouldn't go away ... I do not recall doing anything unusual. My next visit with the rad onc was on the monday after the holiday ... I discussed my arm/armpit with the nurse - she went and got the Dr. and he came in and told me I needed to go to the lymphedema clinic for treatments .... that he and my surgeon had discussed me several times ... and that they'd been hoping the swelling would dissapate... yeah right... hope cures everyhing :-)

At some point during the rads treatments I got a copy of rad oncs notes ... at the very first consult the rad onc had noted that I had Lymphedema of the breast ... so... tell me... why did they wait until I experienced other symptoms to refer me to the LE clinic ???

No idea - and it wasn't that much of a time difference ... and I do love my docs.... but - which they would have been more upfront about this...

I was going to the LE clinic 2-3 times a week from July through December!!! I have never balloned up ... and have never been wrapped ... I wear my sleeve and glove faithfully ... and use my night garmet every night. I'm not doing much for my breast - MLD and a foam thing in my bra for added compression .... do not wear a compression bra or vest (day or night). I am planning to order the compression bra from Nova Scotia...

My LE seems to be well managed ... I only occasionally have pain now... I only see the LE therapist now for measurements of new garmets...
"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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Jun 23, 2006 03:31PM ShirleyHughes wrote:

I don't know how mine started. Perhaps I was just looking for something. I was told in the very beginning of this journey by my surgeon that I was a "candidate" for LE.

During rads the girls at some point had trouble in lining me up for the rads. They asked me if I noticed any swelling. So, perhaps that's when it really started.

I told my onc after rads my concern. He felt both my arms and said they do feel different. He then sent me to an LE therapist (and insisted that I SEE HER) at Duke where I received my chemo treatments. She confirmed I had LE although mild. Then she recommended for me to see someone in my own city. I had several weekly treatments and was released without learning how to self-massage. I was a bit concerned she wasn't quite up on everything such as cording.

Now, I have to get my sleeve and do the massage to keep in check.

I feel fortunate and I think my docs were very aware of this gift that we may or may not get.

I am SO grateful for Binney for providing us with so much info. I am also grateful for the other ladies who share their stories and hints on how they work with this "gift."

The therapist asked me yesterday if I had bought any books on LE and my answer was no and that I did my reading online and ON THIS BOARD.

SO, THANK YOU LADIES.
Shirley
God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference
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Jun 23, 2006 03:41PM AnnaM wrote:

And I thank all of you sisters. Jinky, what a great idea! You cannot imagine how important this thread is. Thank you, thank you, thank you!

Anna
Bilat. MX + DIEP 9/2005, 0/9 nodes and 2/2 nodes; IDC, <1cm, Stage IIa, Grade 3, ER-/PR-, HER2+; 4x A/C, 4x Taxol and 1 yr. weekly Herceptin
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Jun 23, 2006 04:13PM NPat wrote:

I had a lumpectomy and axilllary dissection May 5, 2004. In August I noticed that my left arm and hand were swollen and realized that this sure looked like LE but being a dummy (and a nurse practitioner to boot) decided to wait 3 weeks until I had a follow-up with the surgeon. He walked in the room and immediately said, "You have lymphedema. How long has your arm been swollen?"
When I told him 3 weeks, he gave me one of those looks... I was fortunate to have a surgeon who picked up LE symptoms and immediately sent patients to therapy to the local LE clinic. Now I had been practicing in this community since 1988 and had NEVER heard of a LE clinic. All I ordered were lymphedema pumps... when I picked up LE... (which was rarely) or I treated it wrong with diuretics.

Anyway it took me 6 weeks of wrapping to get my arm and hand down. My first set of garments came on a Friday. I wore them all weekend and my arm and hand reswelled all over again!!! Another 6 weeks of treatment and I finally got into custom garments.

I always wear my garments... except my glove in clinic... hand washing fetish... Oh, that resistant staph (MRSA) started in hospitals and now is in the communities.
We have overused antibiotics to include antibiotic soaps, cleansers, etc and are paying the price.

Anyway, I discuss LE with all my patients who are at risk. I face resistance because many say, "Pat, I was told that this is just a little swelling and is nothing," or "I was told this (swelling) was normal," or "You want me to go to a WHAT and get a massage.... I don't want to be wrapped up like a mummy."

I have even unbuttoned my blouse to show them the swelling in my chest to show how this rotten stuff can involve more that a few fingers. Some go and get treatment... but honestly, I think I am the only one I know that wears the garments faithfully. It is very frustrating for me. This site has been great to provided encouragement to keep on fighting this curse. Binney has been the best! She is so well informed and is my cheer leader.

Pat
NPat
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Jun 24, 2006 03:53PM florencedonna wrote:

Dear Ladies,
Your stories are helping me be properly cautious about my affected arm. I don't have lymphedema (yet) but I worry about my risk of it because I've had puffy hands for years before I had breast surgery. We got a puppy in the middle of the 12 weekly Taxol and we can't clip his nails because I am too afraid of having my affected arm scratched or bit. This sounds kind of trivial but the puppy scratch I got while trying to hold him while my DH clipped is the worst injury I've had to my "bad" arm so far since I was diagnosed in October 2005. (I guess we'll go to a groomer)

Thanks, Donna
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Jun 26, 2006 09:13AM sccruiser wrote:

I was diagnosed with BC in May 2004. Had stereotactic needle biopsy that confirmed it was DCIS with slow growing, very aggressive cancer cell type. Had lumpectomy and SNB June 2004. Started radiation in July 2004 & completed in Aug 2004. complained of pain in breast, areas hardening and swelling in arm, also pain under arm. had slight infection and given antibiotics. when i asked about possibility of lymphedema, i was poo-pooed and told not possible. rad onc even went so far as to say problem not caused by rad. made two airplane trips--both 5 hrs each. told didn't need to wear sleeve. by mid sept in agony--pain in breast excrutiating. requested biopsy of hard masses in breast. denied and told would go away. by nov i was unable to work, doubled up in pain and out of my mind! finally surgeon agreed to do biopsy & refer me to Lymph therapist. trouble getting appt. finally got one mid dec. yes, had lymphedema. put on neurontin, taught MLD, compression sleeve forday time, jovi for breast @ night, also TENS unit. all helped somewhat, but just kept to low pain level. told surgeon would not live this way. chose to have mastectomy w/TRAM flap recon in Mar 2005. diagnosed in Feb 2006 w/ truncal LE. am currently seeing LE therapist. Have extensive Jovi equip. for nighttime, compression sleeve & daytime bra pad, use Kinesio tape on belly, swimming exercises, MLD, etc. etc. etc. am on neurontin 4x , tramadol, etodolac 2x daily, and vicodin @ night if pain is bad.stress & heat make mine worse. this really sucks!!
so glad to have found this website and thread. everyone here is awesome!!
have a question: how many of you diagnosed (or knew) that you had LE and had to convince the dr? my pain management dr just said to me, "you know more about LE than most drs." i thought it was kind of him to tell me that!
grace
One must still have chaos in oneself to give birth to a dancing star

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