Arm amputation for LE

amygil81

I just finished reading the book Gaudete, by Colleen McKinstrie, and it scared me silly. I've been fretting about every little twinge in my LE arm ever since I finished it.

The author is an oncology nurse, dx with BC at age 29. She had the standard treatment for BC, including axillary dissection for positive nodes. She then developed LE, which progressed despite best efforts to stop it. Because of recurrent infections, she had to have her arm amputated. Has else here ever had to consider arm amputation, or know of anyone who has?

AmyQ

Wow, that's the most drastic measure I could imagine..as far as I'm concerned, I would NOT consider amputation unless my life was in peril. Yikes, remind me to stay away from that book.

Amy

Morwenna

The only time I could envisage that happening would be if the subject developed a rip-roaring, life threatening infection, such as necrotising fasciitis, which would require immediate amputation, or presumably had such severe frequent infections that her arm was essentially a threat to her life at worst, or a severe inconvenience at best!

I would think the chances of that happening, especially if you are watchful and get any infections treated swiftly, are EXTREMELY small, and really not something to stress about.

I did have one infection in my arm, which might have been initiated by bug bites. My arm swelled significantly, with some red streaks, and it kicked off my lymphedema diagnosis, but responded quickly to oral antibiotics and a course of wrapping. I now only wear my sleeve intermittently, although I have met one person who has had several hospital admissions for acute infections. She is a keen dragon boat racer, like me!

I agree with AmyQ ...... I personally would not read that book!!!

(Edited to remove insensitive phrase)

exbrnxgrl

I agree with the previous posts. Life threatening infections would be the only reason I would think amputation is considered. I have no stats, but I imagine that this happens in only a minuscule numbers of those with LE. Yikes, I have LE in my arm and leg. I will double up on my vigilance and not read that book.

amygil81

Morwenna, that was what she was facing; recurrent infections just barely kept under control, running out of antibiotics that would work for her, facing the possibility of system-wide sepsis.

CAMommy

my mom, who had BC at age 32 and is still doing great at 75 with no recurrence has LE as be aka when she had her surgery in the early 70's they took all her lyophnodes. She is very careful if she cuts or scrapes her arm and gets treatment quickly.

glennie19

wow, that is scary,, but I would think that would be extremely rare.   Not reading that book either.

cookiegal

On the letter of medical necessity my doctor uses mentions that scenario.

Lucy55

That is very scarey about the lymphoedema ..!!

CAMommy.. That is so inspiring to hear about your Mum.. Did she know any of her stats at the time..??

CAMommy

My mom does not know her staging from back then. She had a very painful lump on her breast that she thought was a cyst. It wasn't. She was node negative though.

Tomboy

I just got that book from kindle unlimited. I had to know what happened to her.

Colleenmck

As the author of the book of which you are speaking of, I apologize that my fight for survival has "scared you silly"!!!!!!!!

My treatment was not standard, as I was in a clinical trial with very high chemo dosages. ALL of my axillary nodes were removed. The tumor was very deep with a questionable margin.

I developed lymphedema almost immediately and suffered immensely for with it for ten years. I am almost an expert in lymphedema care and was extremely meticulous and diligent in my care! I became gravely ill with sepsis on numerous occasions because of aggressive resistant infections. To complicate matters I am severely allergic to several antibiotics.

My memoir is NOT about lymphedema or just breast cancer! Your posts are rude and hurtful. The amputation was a life saving decision and I am sorry that is upsetting to you.

You missed the entire point of the book.

Colleen McKinstrie ~ Gaudete

Colleenmck

"Chopping off her arm" ....really???? How insensitive can you people be?

bythemarina

That's just terrible! Years ago an aunt had breast cancer. This is about 35 years ago, so I cannot remember much about the circumstances. Since my diagnosis, I often think about her and how she coped on a farm using only one arm. I keep brushing it off as something that happened back in the olden days before the technology and information we have today.

vlnrph

I want to thank Colleen for putting her story out there. The Amazon reviews were almost all positive (from non-LE people!) and I think that, as an oncology nurse, she certainly was aware of the risks of continued infection.

The book apparently came out originally as an electronic edition which I mentioned to my husband, our family Kindle holder, and we may download it for vacation reading soon. Her long term survival after such a young diagnosis is worth celebrating. I'm also reminded of our many military veterans who have lost limbs.

Let's not deny the real possibility of lymphedema's potentially severe consequences which might induce us to recoil from obviously difficult circumstances but instead recognize the personal strength/determination required to move forward and live well despite those issues.

AmyQ

Colleen,

None us meant any harm with our comments and as you can see, we haven't read your book. We've also stated life-saving measures would be the only means in which we could see this drastic step. You are right, LE and your outcome scares us silly, but again our comments are without malice.

Now I'm intrigued...maybe I will have to read your book to understand your perspective.

Apologies you were offended. That certainly was NOT my intent and in fact, at the time I posted you were not a BCO member so please know my comments might not have been made at all.

Amy

Morwenna

I was going to post approximately what AmyQ said above.

Apologies Colleen that you found our posts hurtful and insensitive. I for one was not mindful of the fact that you would likely be reading this.

I'm really sorry such a terrible thing happened to you, but as has been said, the gist of all our comments was that there is no reason for people to go into a fear frenzy over something that is frankly an extreme complication of something many people only suffer in a relatively mild form.

I wish you well.

exbrnxgrl

Apologies for unintended offense. I think my point, to the op, was to point out that your situation is rare, and although one needs to be aware of LE and it's potential consequences, amputation is not something to be "scared silly" of. Take care.

Binney4

Colleen, welcome to bc.org. I certainly hope you recover from your upset over the comments here. I too am sorry you've taken such offense, though I'm certainly not sorry the women here posted their honest reactions to this disturbing story.

It's the privilege of any author to derive new insight from the responses of her readers. Most of your on-line reviews are certainly positive (yes!), though personal experience with lymphedema does seem to inspire a different response. At any rate, this is certainly not the Amazon book review page—it's a support discussion board where, as you can see, we all feel entirely comfortable expressing our fears, our revulsion over this chronic and threatening condition we're dealing with, and our support and encouragement for one another--including you!

You might consider patting yourself on the back for having struck such a personal well of feeling among your readers and would-be readers here, even if you consider them to have "missed the point." Every book is personal, and the mark of its success is that every reader is able to take it personally. As authors, once we release our "baby" into the world we do relinquish control over the "point" our readers take from it.

Ladies, we've all been following this thread, feeling the threat of what seems like a new revelation of the issues involved in dealing with LE. But do remember that none of this is news—it's the reason we all know to take IMMEDIATE action at the first sign of infection. Maybe this is a good time to review the information on dealing with LE emergencies:

http://www.stepup-speakout.org/Emergencies_and_Med...

Onward!
Binney

Kicks

Colleen - Thank you for coming here and clarifying the misconceptions that had been jumped to.

AmyQ - Why was it appropriate to post anything (taken out of context) here just because the author of the book was 'not here then'? Makes no sense as an 'excuse' for them.

bythemarina - why do you assume your Aunt could only use 1 arm after BC? I don't 'farm' for a living but I do have horses that I am basically the sole care for and I can assure you that I use both my arms to do 'chores'. For me actually, the more I do, the less I deal with LE.

Binney4

Kicks, 35 years ago the LE care we have today did not exist in this country, so it's entirely possible Marina's aunt lost the use of her arm. It's amazing the advances in LE care in just the past decade! Anyone interested in learning more about the current advances in the field is invited to attend the Patient Summit at the World Congress of Lymphology in San Francisco this coming September, which attracts researchers and other LE professionals from around the world. Information here:

http://www.lymphology2015.com/program/patient_summ...

Several of the gals here will be attending, and I'm really looking forward to their reports!

Hugs,
Binney

AmyQ

Kicks

If I had known Colleen was a BCO member I might not have said anything. Btw I don't feel my original post or follow-up comments need excusing, however I am much more aware knowing the author is aware.

cookiegal

Colleenmck, it's actually really nice and interesting to meet you. Thanks for stopping by. And we hope you stick around.

Sorry if the posts offended you, it is easy to forget that authors are people with feelings.

Don't be a stranger!

Kicks

AmyQ - you posted you ''apologized"! Also that you 'might' not have posted IF Collen had been a Member here - so it's fine to 'say' anything if 'they' are not a member here? OHW

Binney - times have changed in the yrs. Nothing was said that Aunt dealt with LE, just that had BC. As you are aware what works for me is not what is supposedly works and the only way to go. There is NO 'One Way Fits All'.

'Loss of use of arm' 35 yrs ago may have had many causes - not just LE. IF it happened at all - not all BC survivors develope LE. Nothing was posted saying that LE caused loss of arm use - just that how could Aunt have 'farmed' after BC.

Tomboy

I am reading Colleens' book, and enjoying it very much. She is a good writer, and i feel as if i am getting to know her. It is much better written than the majority of books I have read of women's lives. I am glad to be reading it.

Once, when my LE therapist wrapped my arm on a tuesday, she asked me to keep it wrapped until the next time I saw her, which was the next monday. Six days. So, when she unwrapped it, she washed her hands, and lotioned my arm, and proceeded with the manual lymphatic drainage. So, when she was done, she told me, i don't want to alarm you, but you have a red spot near your elbow on your forearm. and proceeded to draw around it with a blue pen. Then she sent me over to urgent care. This was summer and hot, and if you have LE, I am sure you know just how miserable multi layered bandaging can be then. They gave me a double dose of oral anti biotic, and then a script for more. The red spot went away by next morning. But the damage had been done. I was pissed. Because my LE'ist had loaned me her textbook, Foldi's lymphatic system one, just a couple weeks before, because she said no one else she sees was interested in learning more about it. And in that book, it clearly states that if cellulitis is suspected, immediately stop MLD. And she didn't. At a nationally recognized TX place. Yeah. And the week before that, i had been reading a book by an infectious disease doctor, who said that cellulitis should only be established by a doc like him, I don't know if that part is true, but I do believe you aren't supposed to keep going with MLD. But when I got really angry was when I read the L'ist's notes from that day. She stayed that i had kept the bandages on for far too long. What! I wanted to rip them off the day after she put them on, but i tried to do what she asked me by leaving them on until the next visit. it really undercut my trust in her, and I have never told her about it. I just let her do my arm. I don't talk to her like I used to. And so even tho I don't think that I really had cellulitis, it is on my health record. That is just wrong to me.

Especially after the fact that every time I tried to tell all my doctors and nurses about the swelling in my arm, and the acheyness of it, they ALL said, "oh, that's not too bad!". Until it was, and my arm will never be the right size, ever, because they didn't refer me until way too late.

The reason i read the textbook is because I wanted to know my enemy, and it's why I read Binneys' threads, and why I have referred many times to step up speak out.

AmyQ

Kicks, Yes it is fine to say anything as long as it doesn't violate the posting terms. I however would have been more sensitive to posting comments if I had known Colleen was a member. Geez I am done trying to defend my harmless comments to you. I feel for Colleen. I too have LE and certainly don't wish it on anyone, a member here or not.

Tomboy

I hope Colleen sticks around too, and that we can all be friends. The reactions of each, are just that: reactions. It's okay.

BarredOwl

AmyQ:

FYI, Colleen has been a member since July 31, 2015 (i.e., after you posted).

All:

Lymphedema is of great concern to most of us. I saw these early posts, and immediately went to Amazon to learn more about the book and read the reviews, which were quite positive. Like they say, any press is good press -- meaning any discussion that sends people to Amazon can be viewed as a good thing! I also googled to find out more about this medical outcome to determine it is relatively rare.

Naturally, people with medical conditions or risks have to gauge for themselves whether reading something will be more enlightening than not to them or tend to induce anxiety. It is a personal reaction, not necessarily rational, and not an indictment of the underlying literary merit of the work.

Best to all.

BarredOwl

Tomboy

Well said, BarredOwl ! Why are you barred , by the way? Curious.

BarredOwl

Hi Tomboy:

I kind of said what you said, only wordier!

Barred Owl is the common name for an actual species of owl (Strix varia), which I have seen in my yard. The Cornell ornithology site refers to it as an "attractive owl, with soulful brown eyes and brown-and-white-striped plumage". The striping is probably why it is called "Barred".

Edited to add: Just read that in addition to the stripes down its front, it has horizontal "bars" on the chest, hence "barred".

BarredOwl

Kicks

Barrd owl is a a particular owl that is in some aces