GRRRRRRRRR I HATE LE..........
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On the good arm. It started after the LE therapist started moving the fluid to that side. The good arm at that point started to swell in the upper arm. After that we started moving everything down to the inguinals. Has been better until the last few days.
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Ok , now I am 100% pissed off!!!!
I called Luna to check the status on my sleeve. Oh, we've been meaning to call you, your PT didn't get this measurement. I did it my self, they sent it to Germany, and was SUPPOSED to notify me when it was shipped. Nothing.
Time passed. I called PT this am, asking him to check on it. Get a call from scheduling, Mark has received the garment, wants to make appt for fitting. WTH? Hmmmmm, wonder how long he's sat on this.
Called back. Come April 25. No sooner, like yesterday? No, he's going on vacation.
I really don't want to go to Moffitt unless there is nobody in Pinellas I can switch to.
I am over this guy. There just has to be somebody here.
GRRRRRRRRRRRR0 -
Funny how one phone call can change everything?
All of a sudden something came in Fri afternoon and the rest magically appeared this morning.
I don't believe that for a second. As soon as I have them in my possession I'm done with him.0 -
spookiesmom, your experience is simply incredible. Not just inept, but uncaring. And let's throw in dishonest, too. I hope you have a good alternative for your LE therapy, and that as you leave this idiot behind, that you'll take the time to write a polite but pointed letter to the PT facility manager, with cc to your physician who wrote the referral for treatment. Sheesh.
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Thanks Carol
It does seem unreal, and my LE isn't getting better by itself
Problem is, this PT facility is part of a big hospital complex. My BS is a big man on campus. All the nurses when they heard his name say if they get ca he's the one they want for surgeon. My complaint to him wouldn't even be a ripple
So I guess it's an hour or more drive to Tampa.0 -
Grrrrr - had to fly cross country for a conference - flew out from DC to San Diego on Monday and back Friday. And my trunk is swollen up like a pumpkin - I'm up 3 pounds!! I did everything right, even allocating precious suitcase room to my tribute vest and sleeve so I could wear them while I was out there. I'm in a full court press now to try to get it contained, but if it's not down significantly by the end of the week I'll have to get a scrip to see the LE therapist.
If only insurance would pay for maintenance visits with LE instead of that thing where therapy has to be of limited duration and the condition must improve. I read somewhere that Medicare was changing to allow maintenance visits for chronic conditions, so hopefully the private sector will be required to follow suit.
And of course on top of that I'm heartsick and infuriated about Boston. It's incomprehensible. That poor 8 year old boy and his family - they were just there to watch daddy run the Boston Marathon and look what happened. It's sad, sad, sad.
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Mary, I'm flying across the country on Saturday, and will fly wrapped. I do see my LE therapist, but she's an LMT and I pay out of pocket.
Just had my third D&C on tamoxifen, and resisted it, and unfortunately the pathology is not good: high grade atypia, so now I have a hyst in my near future and a new doctor--a gyn oncologist. She told me I could refuse removal of pelvic lymph nodes--only done if the path is highly irregular, which she doesn't expect.
I'm still in shock that I'd be the 1% to get endometrial cancer from tamoxifen, but I adore my gyn who despite a negative endometrial biopsy in the office, wasn't comfortable and pushed/pulled me into the OR.
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I'm sorry about your results Kira but so glad you have a great (pushy) Dr.
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Spookie, Grrrr is right.To drive a further distance to find proper care is a bummer but in the end you may be doing the right thing.
Natsfan, Maybe you should not wait and see how it goes but just make the appointment and be done with it. Double grrr.
Kira, I just can't believe it, the drugs that are suppose to help us are a double edged sword. It just doesn't seem fair. We try so hard to be healthy, do the right things and BAM! we get hit. Thank goodness you are educated in the medical world and can advocate for yourself. We will all be thinking of you and you have our support.
hugz4u!0 -
Kira I am so sorry to hear this news. I'm sending prayers your way.
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So so sorry kira
Darm drugs ! Thats just why I refuse them all. I am really sorry you have to deal with all this. It just stinks.
Thank goodness you have a good dr. and you yourself make the right decision in terms of the nodes, I am sure.
Here's hoping for an " easy" time of it for you ... you will most definitely be in my thoughts and prayers.
Take Care.
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Hmmmmm, wonder how long he's sat on this.
Sounds SO familiar!
My fitter sat on mine for many weeks until Josh from Lymphedivas just sent them to me ! She also lied point blank and said she had faxed it when she had not She said she called me back 3x , but her number did not appear in my call logs !This is sickening! I will never ever use that fitter again.
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Kira - rotten news. Thank heavens that your doctor decided to "treat the patient, not the lab work". Even though your lab work was fine, the doctor still had a feeling about it and pushed you for more advanced testing. Those doctors are golden.
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Mary, my gyn is amazing, it's not often that you feel like someone really did save your life. I kept having bleeding and polyps and she did 2 previous D&Cs and at my annual, even though I wasn't concerned she did an endometrial biopsy that was normal, but she had a bad feeling about it and wanted to go straight to a D&C and I asked for a hysterosonogram, and it showed abnormalities, and even in the pre-op area, I was grumbling. And had met with my onc the day before who said to complete 5 years of tamoxifen in August.
And when I discovered the pathology, on my lunch break, thought I'd print it up for my files, and she hadn't been informed, she got right on the phone, talked to me, and then called the specialist. Who wouldn't see me for a month. So I called my onc, and she suggested another gyn onc who saw me the next business day.
It isn't fair, and of course I worry about lower extremity LE, and the gyn onc discussed it with me. She will not take nodes unless she finds very advanced disease at surgery, and even then I have the right to refuse nodes until final path is back.
Ironically, I gave a lecture last year to the gyn onc's and fellows about leg LE with the robotic procedure and how they were scooping out up to 50 nodes for early stage disease....The woman I saw said that she NEVER takes them automatically.
Right now, we're scheduled for around 3+ weeks from now.
And my gyn has called me multiple times to check in.
And I tossed the tamoxifen in the trash.
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Oh Kira, I am so sorry to hear your troubles. Thank goodness you have such a great doc. I hope everything goes well from here on out. Grrrrrr is right.
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It isn't fair
You're so right, kira. It's just not fair !
Thank goodness they won't take nodes routinely. Let's hope after this, all of these issues will be behind you. ugh
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I am so sorry Kira.
So do they take nodes out when they do prophylactic Hysterectomies? I am just asking because I feel 100% sure I had a problem before this but it got worse not even a year after that surgery. Nobody mention nodes beign taken. humm My gyn went out of business in Nov. I need to find a new one and just haven't had time or rather I don't think about it till they are closed.
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Hi Kira so sorry you have to join yet another "club" no one wants to be in! I am also one of the 1% who got Endo Ca from Tamoxifen. Hope yours turns out to just be atypia. I am fine 8 years out from the uterine cancer. I'm sure you will be fine, too! Good for your proactive Gyn to have caught it early!
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Kareenie, knowing how many women I've heard from who've had significant issues from the tamoxifen, I kind of question the 1% number. Also, the risk goes up the longer you're on it, and I was almost at 5 years, and was having issues all along.
The surgeon emailed me yesterday and we're planning for the hyst in the next 3 weeks: part of me wants it done yesterday, and part of me understands that it's only an emergency to me. The surgeon I've chosen brought robotics here almost a decade ago, after a year fellowship at Mayo in robotics, but was on a long maternity leave and is getting her practice up and running again--there have to be other practiced surgeons in the OR for her first months back. The high volume guy who wouldn't see me until mid May won't respond to either me or my gyn, and this woman met me specially and gave me her cell # and returns my emails immediately. And my gyn respects her.
Kittydog: when there is invasive cancer, the surgeon will do a lymphadenopathy and remove pelvic and peri-aortic nodes. Some surgeons, if they're doing the hyst for any kind of cancer--even stage 1, take nodes. Unfortunately, just the trauma/scars/adhesions can trigger swelling in those of us who are predisposed. You can ask for your pathology and surgical report from the hospital. You have a right to it
My gyn is amazing. I fought and fought her, and she persisted.
Kira
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I was on tamox, What are some of the symptoms besides bleeding? Sounds like some girls may have had suspicions. Could you educate us.
kareenie, I am sorry that you had to take this Endo journey also, It sounds like you took a hammer to it
. Congrats to 8 years. That is fantastic
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Hugs, for me I started it when I was just turning 50 and still had periods. I did have a lot of polyps before I even started it, which caused the first D&C, and then I was continuing to have "periods" so I had a second biopsy, they found a huge polyp and this year because I was still having "periods" at almost 55, she went the biopsy route again.
We did hormone studies, and my FSH/estradiol were not yet in the menopausal range, but tamoxifen was first developed as an infertility drug, similar to clomid, and it stimulates the ovaries.
It's hard to know when you're having abnormal post menopausal bleeding, if you're never really in menopause, due to tamoxifen.
What I read though, is that the toxicity and risk increases with longer exposure--the risk is up to 5x at >or=5 years exposure, and women who develop polyps--which are outgrowths of the endometrial lining--are at even higher risk.
The stated risk of endometrial cancer is 1/500, and with 5x the risk it becomes 5%
But all the reading I've been doing says tamoxifen is like having unopposed estrogen on the endometrium and poses it's own unique risk
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Hearing this - my bottle of tamoxifen is still full on my shelf - Was going to try it this next month but with everything else that is going on - I haven't.
My oncotype said I could be 6 out of 100 that could have a recurrance. Not sure I want what I have been hearing..
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GMAfoley, my oncotype score was 12=8% recurrence at 10 years if you take tamoxifen for 5 years.
The problem with statistics is, when it happens to you, it's 100%
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The problem with statistics is, when it happens to you, it's 100%
SO true!
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i see that the last post was in 2010. however, i was diagnosed ibc in 2010. the gift of le came along and no one diagnosed it as such for months . i am really pissed i left my job because of it and a few other reasons.like i lost all my benefits so why work? my hand was huge and my dr. kept saying he didnt know what it was. that it was maybe gout and i would have to live with it . i found a neew dr. (not onc) . i am now in the position of needing to work but i have no idea what i can even do now. i had a certain set of skills required for my job and now i just feel stupid. my glove seems to aways be dirty i am so angry about the WHOLE mess and really feel like NO ONE gets it. i dont even have a very supportive husband to lean on. i have a husband but he doent get it either. i am mreally really angry with my onc. nurse pract. i was desperate for an answer and she gave me an attitude and a diagnosis of cellulitis well yeah i found out later that my cellulitis most likely triggered my le since i had both at the same freakin' time! I swear i will never speak to her again . i will speak chemo nuses first if my oncs not avail.
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Rose. Ok I hear yah, You need to wrap up your docs in denial in your dirty LE bandages and stick them up on top of the Seattle space needle with the rest of the docs in denial. I will help you. I know you will have a sense of relief once they are up there!
Thankfully you found a good support system here. We can listen and offer suggestions.
google stepup-speakout.org for great help. Some of the girls here wrote that website and it has all kinds of LE answers and how to find a qualified LE therapist etc, sleeve and glove fitting etc, plus you can post here.
Regarding the dirty glove, I hear you loud and clear. I feel as though I am a walking germ factory with it on. Remove it before going into the bathrooms and put it on after coming out or put a plastic throw away glove on during bathroom or handling raw meats or germy stuff. Still I haven't figured out what to do with door handles. I try to use my non dominate hand but that is awkward. Perhaps some others will help us on this problem.
You deserve double chocolate brownies and hugs for sticking it out.0 -
kira - thinking about you! My mother was one of those who developed endometrial cancer from Tamoxifen. She was totally fine from it, though. I pray you will be too!
Don't go throwing out your Tamoxifen bottles too quickly, though, ladies. Mom stopped taking the AI's ... and within a few years her breast cancer came back with a vengeance. I get it, though, I really do. One of the reasons I went ahead with a DMX instead of a single is because I didn't want to take it if I didn't have to.
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Rose - oh my that's awful. I hope you've found a good LE therapist, they may be able to steer you in the direction of a doctor with a brain also.
Hugs - love you Space Needle comment, makes a great visual doesn't it.
I have to wear a once piece sleeve/glove, so it's even harder, I just try not to use that hand much, maybe I should get a light weight glove to cover it. Some one suggested on one of the forums, just a light cotton glove. Just haven't done it.
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Note to self and others that don't know this - Pain causes swell - even when the pain is not located where your LE is GRRRRRRRRR - Hurt myself in between the shouder blades and it is in total spasm.. saw the doctor's PA (I like her) and we discussed what to do and said first and for most - lets stop the pain - at that point I realized that is what has been causing my swell! I haven't had the pain in control for 3 days.. but found out what I could take without interfering with my other meds... working on it now...
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I found this video really interesting - short and informative. Watching it helped me understand my lymph issues better.
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