GRRRRRRRRR I HATE LE..........
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Linda - I tried all the AI's and the SEs were so severe the ONC took me off - Tamoxifen is my only option and they are still on the shelf staring at me - I think at this point, I might as well try them - I have my ovaries not my uterus. They said I would be ok - I am having trouble with this decision, but besides diet - what else can I do???
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That's really interesting. My MO had me on Tamoxifen for 5 years, and now I'm on AL. Had no noticeable SEs on Tamox but sure do with AL. From the AL forum: lots of women suffer from SEs, some more than others. Many would like to stop taking AL because those SEs can be very debilitating. I am only hanging in there because I want to do all I can to prevent recurrence. Fun it isn't.
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I am not on the hormonals Linda because I have severe osteopenia and have already broken 3 bones. Seems like ' nothing much' until it happens. Arimidex could set me up for a broken hip in no time.
I just dont like *any* of the options . If you "MUST" get BC, it sure is better to go in healthy. If I had to hav e a BMX, there is no way my lungs would allow me to have long reconstructive surgery.
Tamoxifen is out for me due to serious circulatory issues as well as 9 yrs of idipopathic bleeding with lots of D&Cs , hysteroscopy and eventually, endo ablation.
I dunno'. Would a hysterectomy be the answer for me ? I'm post meno. Perhaps- with a spinal of course.
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gma - HUGS. Im so sorrry. Im the 2nd one in my family.
dassi - At the end of the day BC is a hideous disease that kills. The way I see it there are NO real easy options once DX. Oh we can look on the bright side and all that (when we're able)... but theres always reminders too...It is all a choice between the LESSER of 2 evils. In other words it is a life changing event and if anyone wants to go prophy then go for it I say. It is for your life and thats reason enough.
Just in case it needs a little clarification... AI's dont work unless youre post menopausal. Appropriate blood tests can even be wrong. Such was the case with me...hence 2 years on Tamox.
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Sorry about the side effects Gma - my onc has suggested Tamox, but I'm doing pain management to try to deal with the SE's of AI's, not osteoporosis though (yippeee), just LOTS of pain issues.
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Nope.
No easy options with cancer - or with LE.
Finally canceled my MRI apt and am going in for my first post op ( year) mammo today. Very nervous - please keep me in your good thoughts.0 -
Hang in there Purple. Good luck today.
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Keeping you in my thoughts purple, good luck. I go for my one year next month.
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ok - ONC ok'd me to take a half of pill the first 2-3 weeks then go to full pill if SEs aren't bad. If they are bad, I stop and we talk.. About what I have no idea - I'm already on an anti-cancer/anti-estrogen food regime. Not sure there are any other choices.
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Wanted to post an update: I did a lot of research, and found that removing all the pelvic nodes for staging doesn't change management in early endometrial cancer, and found a great concensus article in ob/gyn literature that said for my pathology: complex hyperplasia with atypia, a "simple" hysterectomy with or without ovary removal is the proper procedure, NOT removing all the pelvic nodes to "stage" or intraoperatively if some cancer is found, as it's likely low grade.
So, I called my surgeon and she said "I completely agree with your decision to decline a lymphadenectomy" and also sent me an email of support.
I had told her that the stress of going into surgery not knowing what was going to be done, and the high likelihood that I'd get leg LE without any clinical benefit were driving my decision, and she agreed.
Saw my gyn who agrees as well.
So, not looking forward to the hysterectomy and they will take the ovaries as well, but now I know that my pelvic lymph nodes are not being removed.
And I think the NCCN guidelines are ridiculous, as they recommend staging ALL women no matter how low the grade, and then if for some reason they aren't staged, they just recommend observation for Stage 1A, grade 1-2. And higher grades, they recommend pelvic imaging for unstaged women. They acknowledge that the studies out of Europe show no clinical benefit from removing the pelvic nodes, but say it's still the North American standard to do so.
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Kira, your research and the information you have passed on to us is invaluable. I'm glad you'll be keeping your nodes.
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Thanks for your update Kira, which Ive only seen after I PMed you. We are all thinking of you. Is there a date for your Hysterectomy?
Purple, all the best for Mammo. Hang in there.
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Thank you ladies. I had no idea this first mammo would be so stressful. The left (affected ) side was fine. The right side wasnt even on my radar. After a wait in the waiting room, I was called back for 2 more shots ---of the right (UGH)
Then, she said the radiologist thinks there are 'nothing to be concerned about '. ugh again, but- could have been worse.I see my BS May 10th and see what she thinks.
Thanks so much for all the support!
kiraI saw your message on the other thread and replied.
Best of luck to you .
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Purple, good luck with the mammo!
Kira, I am in awe that you were able to get to all that research. While it is great that you have doctors that listen to you, I think they should have been able to give you all those data so you could make an informed decision. I can imagine what will happen to others in your situation that are not skilled in research. They'll end up with the standard procedure that has no benefit, and can cause LE!
Anyway, I believe you made a wise decision. If they can do it laparoscopically, that would be optimal. But I don't have to tell you that as a nurse. Wishing you a successful operation and speedy recovery!
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Thanks dassi- went okay.
Kira
Rather than lap, what about internal and spinal ? is that a possibility for you ? Hope so.
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It's being done with the robot. My gyn told me it's called a Laparoscopic assisted hysterectomy with bilateral salingo-oophorectomy.
The date is in two weeks exactly, on May 14th.
My gyn says I can't lift for 12 weeks. The gyn onc said more like 6, and I'm seeing her next week, so we'll see.
Work is well aware that I'll be out. And I told them today about the lifting restrictions, so we'll figure it out.
I really wish this had never come up, but I'm so glad I found/was referred to a gyn onc who listens and cares. As my gyn says "she has a heart". From the woman who dragged me kicking and screaming into the OR for the D&C I insisted I didn't need...She said you complained, but you came.
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We're all thinking of you Kira and we're right there with you. We wished this never came up for you as well! However since it has, it is great that youve got a good gyn. Doesn't matter how much we know in the back of our heads what might come up, we can never really prepare for ops like these. Theres always that UGGH feeling and thats natural.
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Kira thinking of you. I am glad you did your research. I have a very swollen right leg this week. Now I wonder if I did the right thing but yeah I would have it all over again. Surgery is not bad at all. I don't remember the not lifting..just the two weeks of no driving. That was tough with a child in school.
So my grrrr Weather would you make up your mind. Hot or cold. I am sure that and the ham I had last week is playing a role in my swelling.
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Sending good thoughts to all of you... I've been off line long enough that I'm not even going to try to respond to you all individually just know I'm thinking of all of you.
My mom has been back in the hospital for a while now and I'm not hopeful she'll make it back home. Now to top off a lousy run of news, it seems one of my old dogs has had a stroke. He's holding his own right now but...
To make this on topic, I haven't been exercising, I've been eating all the wrong things and I'm sure I'll pay for it. GRRRRR. On the good side, today was the last day of classes for a while so maybe things will calm down at work.
Miss you all, and I'll try to check in soon.
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kira - thinking about you!
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Lots to grrrrrrr about but have to say this:
My LE arm has been hurting so badly. Was sad tonight because really wanted to make some cabbage soup (my favorite and it's cold rain outside) but knew it wasn't a good idea because of the state of my arm. My brother graciously cut up all my veggies for me so not only could I make cabbage soup but also some cauliflower soup. It made me smile and it was a true highlight in the midst of a lot of LE grrrrrs.
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Cindy, goodness, you've been hit awfully hard lately!
But I have to say I love your spunk and spirit. Wish I lived close enough to pitch in. Short of that, please know you're in my thoughts and prayers.Dawne-Hope, care to share the cabbage soup recipe? Very neat brother! He must like cabbage soup too.
Gentle hugs,
Binney0 -
Binney - Here's the 'recipe' although I've greatly altered it to my tastes. I love garlic and tomatoes so I've added loads more than the original recipe called for. The one I found was very streamline and I've added lots and lots of veggies to it.
Here is my modified version:
Ingredients
* 3 tbs of olive oil (but depending on how many veggies I throw in, sometimes I increase it)
* 1/2 onion, chopped (but I generally use a whole one since I don't put salt in)
* 2 cloves of garlic (but I ALWAYS use more, again since I don't put in salt. I've used up to 6)
* 2 quarts of chicken stock (8 cups...I buy organic, low salt chicken stock)
* 1 teaspoon salt (I rarely put in, sometimes just a dash)
* 1/2 teaspoon black pepper (I double it and put it a teaspoon)
* 1/2 head cabbage, cored and coarsely chopped (I use a whole one)
* 1 (14.5 oz) can Italian-style stewed tomatoes, drained and diced (I use 2 cans and I've experimented with a lot of tomatos ... and I prefer diced tomatoes ... 2 cans, low salt and I don't drain them). I do love tomatoes
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I add celery (a whole bag), carrots (a whole bag), I chop up radishes (about 8) in my food processor and throw all of that in the pot:
Directions:
1. In a large stockpot, heat olive oil over medium heat. Stir in onion and garlic (and in my case, the carrots, the celery, the radishes and whatever other veggies you might throw in).
2. Stir in chicken stock, salt, pepper. Bring to a boil, then stir in cabbage. Simmer until cabbage wilts, about 10 minutes (with all the veggies I have in there ... this may take up to 30 minutes).
3. Stir in tomatoes. Return to a boil, then simmer 15 to 30 minutes, stirring often.
Yum, yum, yum!
Tons of veggies with little or no salt!
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Dawne-hope, thank you! Man, that sounds great--gonna make it this week!
Yum!
Binney0 -
When we had an overabundance of cabbage one year I looked for a soup recipe and found none that took my fancy. Whe would think on a GRRR hating LE thread we'd find a cabbage soup concoction of note. Thank you. I love cabbage, especially from our garden.
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Cindyl
I hope your lot improves. Seems like one too many curve balls to be playing with at once.
You take care .
(((hugs)))
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i will take all the double chocolate brownies that come my way thank you very much! and yes the space needle will do just fine . thank you hugz.
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here's my latest grrrr. I have swelling in my neck. My FP thinks it is from neck stress but I noticed his notes said that and maybe LE. great. It's down some but not totally. Thankfull the muscle spasms have eased off. Go away swelling.
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Is there a test for diagnosing LE. My legs have been bothering me and I was wondering if I could have LE in my legs also. I get so tired of complaining, but it seems like I get one part of my body feeling good and another part of my body goes haywire.
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Kitty
That just STINKS!Go away go away go away swelling! have you seen your LEist?
Guygirl
Dont feel like you are coimplaining. We are here to help each other - ar at least lend a sympathetic ear when we cannot! In ' what way are your legs bothering you ? can you describe this ? Have you INCR your exercise/walking lately or done anything that might cause them to " bother you "?
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