GRRRRRRRRR I HATE LE..........
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Linda
Thanks for posting that. I think it is a useful " minute' - ESP. for newbies and you might wnat to consider giving it its own thread. It's short and sweet and not overwhelming.
Very good find !
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Linda, I think that was very informative and I may take this info into consideration when people ask me about my LE.
Mods, Can you pin it to the top of our threads?
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I started a thread with it.
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Girls I just had a PM from Grateful33. She hasn't been on the threads for a while. Her arm blew up last thurs from a BP. She clean forgot to mention that she had LE. She is sad. I advised her to go to her MLD girl and get wrapped, etc. Could we all encourage her. I think she needs some support from us! I am hoping she sees our vitual hugs and concern.
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Hi girls....I'm new here
Thx hugz...you are so sweet. I have been lurking and reading all the wise words of advise from everyone. I feel so lost and so stupid as I let the girl take bp on my arm last thurs while doing my echo (completely forgot to warn her) Now my mild LE arm is no longer mild esp the upper arm and axilla/trunk. I have not been able to find a custom glove to fit and the circ aid night garment that I paid $500 for does not fit either (sleeve and glove) I am so sad and lost
It helps to vent and I do have an appt for an MLD today.....but am so lost as to where to turn and am so mad at myself...grrr
Thanks ladies for listening...
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Grateful~welcome. Sorry to hear about your arm. It's easy to forget to tell people to leave it alone, you aren't the first whose forgotten for sure. Hopefully getting MLD today will be just what you need to get things under control. Thankfully you were able to get an appt. fairly quickly. Good luck today and let us know how it all goes.
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I'm guessing you'll be wrapping to get the arm back where it belongs, and then you'll be able to return to normal maintenance with your circ-aid. How frustrating, but how human to forget. We ALL want to forget LE!
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Grateful, I'm so sorry!
Mostly, I'm sorry you're busy beating yourself up over this. Soooooo easy to forget when we're in a medical facility, because our minds are already doing cartwheels trying to cope with the stress of whatever we're there for. The fact is, for those of us dealing with LE, the most dangerous place to be is in a medical facility. This should NOT have been your responsibility at all. It was THEIRS to protect you because of a legitimate medical condition, and they blew it. They are not properly taught, not in nursing schools or medical schools. Shame on them!
As for the flare you're now dealing with, part of the problem with that is that it flattens us emotionally. You're not alone in that, and some of us suspect a systemic reaction that includes an emotional component when our lymph system is overwhelmed. So take some deep breaths and give yourself room to feel distressed and frustrated, then plan how you're going to get everything back in working order. Stay extra-well hydrated, elevate that arm as much as possible, wrap if you know how (or make your therapist teach you if you don't), and be extra kind to YOU (chocolate helps here
).Keep us posted, and tell us how we can help!
Gentle hugs,
Binney0 -
I feel so lost and so stupid...
grateful
Please don't feel stupid. We shouldn't have to add insult to injury - and have indeed, been injured, all of us. Regret stings more than anything . You really must try to let it go. You have every right to be sad, and I dont invalidate that for one second, but please dont direct it at yourself.
I hope your appt. with the MLD will quiet things down, and some good advice from your LE'ist should also get you back on track. Let us know- we all care.
This could happen to any one of us.
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Just last month I went for a blood draw and without thinking I put out my "wrong" arm, luckily I remembered just as she was getting ready to put on the tourniquet, don't beat yourself up.
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Hi Ladies
I am overwhelmed by all the good wishes. Thank you so much! I feel emotionally so much better to know that I am not alone (although I wish none of us had to be here). The support really helps especially when the LE flare causes so much emotional distress.
The MLD today did help to a degree and I have been kinesio taped as it seems to works on me. I will see her again on Thursday and if not improved then wrapping it is. I do need to learn this tool. I am so new to this.
Chocolate will definitely help!!
xoxox
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Grateful. Glad you went .....you smart girl! If the tape starts to come off just cut that part off and leave the rest until you see LEist girl. Don't rip it off like a bandaid as your skin could sustain a burn like scrape like mine did and I swelled in the exact shape as where the tape was. Maybe let the girl take it off. I also tried to remove it with olive oil but it was stuck hard on because my LEist used a "stick on" spray first. Not good for me! I am overjoyed that you are taking care of yourself. I'll PM you back another day when I am not so busy.
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Is it ok to have ultrasound or muscle stimulation on my scapula when my LE is in that quadrant? I can't find any info on that just extreme ice and heat )which we are keeping to 10 minutes).
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I dont know Gma , but your post looks like you are using extreme ice and/or heat.
Are you ?
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We are using ice - I have read you can do it with caution - No more than 10 minutes and we are watching for any sign of LE. So far I think the exercises seem to make me slightly swell more than the ice.
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GMA I feel for you. Here is a kiss and hugz4u to comfort you
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Kira,
I posted on the tamoxifen/endometrial board to you. I really, really hope they don't take nodes in your surgery. My experience included node removal and now I have leg LE too. They warned me that I would need nodes removed as I had a positive biopsy for endom. cancer prior to surgery. This was after 2 years on tamoxifen.
I still use leg compression 24/7. Jovi boot at night ($$$) and leg compression hose during the day. I'm hoping it will improve with time like my arm & chest did. I find being active helps me more than anything else.
Best of luck you.
Betsy
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Betsy, thanks for posting. My gyn onc really hopes to avoid the node removal, but she can't say 100%, as it depends on the path during surgery, although she gave me the option to refuse it all together.
She asked for articles and I found a few, recent ones, that showed stage 1A and 1B endometrial cancer, the yield on node removal was 7% and 15% positive nodes and up to 50% leg LE.
What I like about her is that she said that some surgeons routinely remove nodes no matter what and she does not.
I put this on the hormone post:
I did find three articles that suggest routine taking of nodes doesn't help and leads to LE:
Here's a Cochrane review: www.ncbi.nlm.nih.gov/pubmed/20...
AUTHORS' CONCLUSIONS:
We found no evidence that lymphadenectomy decreases the risk of death or disease recurrence compared with no lymphadenectomy in women with presumed stage I disease. The evidence on serious adverse events suggests that women who receive lymphadenectomy are more likely to experience surgically related systemic morbidity or lymphoedema/lymphocyst formation.
But, I just read the NCCN guidelines and they DO strongly recommend pelvic lymphadenectomy for every single case of endometrial ca, even stage 1A. Scary
Betsy, did tamoxifen cause your endometrial cancer? The number they throw around is 1% risk, but I keep hearing about more and women with problems and the longer you take it and if you get endometrial polyps on it, the risk is higher. I took it for 4 years and 8 months and had polyps that required three D&C's.
Very anxious here...
Thanks
Kira
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GmaFoley - my LE, said it's fine to ice, but not use heat on that quadrant. She's also said that ultrasound is ok on my hand (thumb joint issue), but don't know about muscle stim. I've actually Private Messaged Joaquim from the Lymphedema Guru on Facebook and he's gotten back to me with answers. You can check him out at http://www.lymphedemablog.com/ I don't see a way to email him, but there is a link to his FaceBook page on his blog.
I saw that you got your Jovi-garments. When I first got mine I couldn't wear them all night (I wore a chest and back thing under a sports bra, then got a sleeve) I rarely use the chest garment any more, but do wear the sleeve, and there are many nights that I can't wear it all night because of pain, and sometimes it makes me feel quite claustrophobic.
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Kira I've just seen some of your recent posts and Im so so sorry to hear of your issues. It seems we're always gotta be on the lookout for something or another. As if BC then LE in your arm isn't bad enough then to face this.! UGH You have helped so many of us with your knowl;edge and input and just want to say we appreciate you. BIG HUGS.
The number they throw around is 1% risk, but I keep hearing about more and women with problems and the longer you take it and if you get endometrial polyps on it, the risk is higher.
I had 2 years on Tamox, and I was told 2% risk. I finished Tamox about 1yr 4mths ago and went to Arimidex. Around the culmination of the 2 years I had a few issues that led to a hysteroscopy. I had a polyp removed and all I remember being told was that it was benign so it was left at that. In light of what youve said both about the 1% and the polyps, I wonder how long that risk stands for? In NZ the medicial profession are very much against patients being "over monitored" which is a double edged sword. The reasoning holds some truth to it but it's also open to abuse.
I hope things go well for you!
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Gma, icing is fine as long as the time is restricted and there's some protection between skin and ice pack, but any extremes of temp can cause problems. Y'know how if you're having a snowball fight and your mittens get soaked and your hands get cold, they swell and sting when you come back indoors? That's called "rebound swelling, and you want to avoid provoking it.
Hope you're feeling better!
Hugs,
Binney0 -
- my LE, said it's fine to ice, but not use heat on that quadrant.
I dunno'.
I dozed off with an icepak suggested by the hospital , and woke up with (my first noticeable) symptoms of LE.
Just be careful.0 -
Thanks Musical, I read the NCCN guidelines with horror, as they routinely recommend that all the pelvic lymph nodes be taken for even low grade endometrial cancer....
I have complex hyperplasia with atypia and I found a concensus article from last year:
Lymphadenectomy at the time of hysterectomy surgery for atypical endometrial hyperplasia would result in overtreatment and increased surgical risk for the majority of patients. Endometrial carcinoma asso- ciated with atypical endometrial hyperplasia or endo- metrial intraepithelial neoplasia diagnosed in the hysterectomy specimen are usually low-grade, early- stage lesions that have a low risk of lymphovascular dissemination.16–18 The risk of a concurrent high-risk uterine carcinoma (high grade, high stage) in women with a biopsy diagnosis of either atypical endometrial hyperplasia or endometrial intraepithelial neoplasia ranges from 5% to 7%.16–18 Thus, the consideration of lymphadenectomy as a routine part of treatment for atypical endometrial hyperplasia or endometrial intraepithelial neoplasia would result in 93–95% of patients unnecessarily subjected to the risks associated with a pelvic lymphadenectomy. Simple hysterectomy, with or without oophorectomy and without lymphade- nectomy, is the most appropriate surgical treatment for atypical endometrial hyperplasia.
But then they go on to recommend frozen path and lymph node removal "if indicated"--we need to clarify that. Based on what I'm reading, I'm almost leaning toward refusing all node removal. In Europe, that's the latest trend, but it hasn't gone to America yet.
I was thrilled to have low monitoring and my initial biopsy was negative, and this was found on hysteroscopy....
I had previous polyps removed which were benign--two times....
The gyn onc asked me for articles, and she's getting them.
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You are never supposed to leave ice on very long, can't remember how many minutes she said, but I think it's something like 15. I do know heat is worse than cold, and like Binney said should be something between you and the ice, like a wash cloth. Purple, maybe what you got was some rebound swelling like Binney mentions above. Not sure what extreme icing is, doesn't sound like a good idea to me.
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Based on what I'm reading, I'm almost leaning toward refusing all node removal.
Based on what you are reading (and knowing what we do about LE ) I certainly would refuse.
No question in my mind. Good luck with whatever you decide.
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Purple, the NCCN guidelines for unstaged women, those without all pelvic nodes removed, indicates for low grade cancer, the treatment is observation.
I also found a consensus statement that recommended no node removal for the path I have, so if there's no real benefit and a lot of downside, I'm not seeing the point.
I'll be talking to my gyn and gyn onc today.0 -
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Just found out - another sister has Breast Cancer - ER+ Hers2+ - she is having surgery Weds and I live 500 miles away
.. This is 3 out of the 4 sisters now have BC within 2 years of each other. I could use the hug back... I told her about our site and Step up's site - I hope she takes it seriously...0 -
With all the risks for endometrial issues when you take Tamoxifen, wouldn't it be beneficial if those past childbearing would just have a hysterctomy? If you are genetically at risk with BRCA, for sure there are a lot of advantages. Ovarian cancer is often only found when it is already advanced. I may sound grim, but I think that with BC we should seriously consider prophylactic surgery. (whether that is a double mastectomy or the above) No, I am not fond of any surgery but the idea of getting CA again and having to do chemo again is even less palatable. It'd food for thought.
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Talked with an MO at a teaching hospital and he said he strongly recommends AI's over Tamoxifen if you're past childbearing, he puts his patients into menopause (pharmacologically or surgically). He's that sold on the effectiveness and SE differences between the AI's and Tamox! He says the info coming out of the trials as pretty overwhelming.
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