TRIPLE POSITIVE GROUP
Comments
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Sorry I've been MIA. Lots of job hunting and a few interviews. No bites yet but maybe. Haven't had a chance to look over what's been going on the past week or so.
NickyJ my mom and her uncle both have/had LE in their legs. My mom wears support hose or stockings. It wasn't caused by surgery. Has your doctor recommended anything like that for you?
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Iago, yes. Mine wasn't caused by surgery either, it's in all my left side from the tips of my fingers to my toes since 2 months into chemo. I have PT at least twice a week and have done since November 2012. I also have stockings and a sleeve. Just bad luck I guess!
Nicky
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No bad genes. I know I was going to get LE even though I only had 10 nodes removed (left) and no rads. My BS was "oh your chances are about 5% and since your thin probably 3%." I was like yeah and my chances of getting breast cancer at my age with my risk factors and no family history was 2%. I have a family history of LE. Sadly 2 years later the protocal is not to remove level 1 nodes for tumors over 5cm unless gross disease is detected. My BS assumed I would have micormets.
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I agree. I must have had a pre-disposition. No surgery, no node involvement, underweight,and yet LE is for me a major issue. No family history though.
Nicky
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Nicky. So sorry you are dealing with so much. Hope the back problem is resolved as planned.
Lago hope someone bites for you soon. They will find out just how great you can be if they get you!
Fluff hope your foot heals fast too. To all, Much love and stay warm!
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Moon we're having the same kind of weather we keep saying stay warm to everyone. LOL
Lago it's just a matter of time then u'll have to make a decision on which job u want.
Nicky I know this will get resolved for u, u sound like everything is going according to schedule, and hopefully no pain.
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thanks Camille, I do feel better knowing there's a plan in place.
Iago, I can't believe no ones snapped you up yet; you'd be an asset to any organization!
It hasn't stopped raining for weeks here, and there's no sign of it stopping for the foreseeable😕.
Nicky
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nicky,please send some of that rain to me! and to other places in the world that are dry as my bones!
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Kath I see on the weather CA is unbelievably dry right now so I hope u get some relief. We're getting slammed here we had some more snow and now super super cold. Bad winter.
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Nicky these days its all who knows you and if the team would "want to hang out with you." My age isn't helping in some cases but I'm not a very bubbly cheerleader type. I have dry humor and formal when first meeting. I just haven't found a place that sees my personality as a fit. Also I look back and I have never had anyone hire me that was younger than me. Since all the older managers have been replaces with young people this is making things a bit more of a challenge. Also, although I am not asking for big money I can't compete with someone who is in their early 20's, living at home or with 4 room mates that can afford to work for very very low wages.
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Iago, it's just not fair, is it?
I really do hope that something turns up soon for you, though. Experience counts, too!
To all those suffering a dry spell, I'd gladly share some- actually all! Of our rain. I'd really love some cold dry winter weather right now!
Nicky
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Nicky not this cold. They have already called school off this morning due to cold weather for tomorrow.
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ok yes, maybe not that cold!! I'm quite happy to see my kids off to school in the morning!
Hope you're keeping warm
Nicky
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Oh i don't think they've canceled here yet. But it could be. Predicting -10-15.
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Dana. Ask your doc or a physical therapist about KT tape. Or google it. It will look like/sound like witch doctor crap. But-the OTs, Paramedics, sports medicine guys swear by it. And, one day I was in my office moving my wrist around with my CT (swear was related to taxol or taxotere) and one of the paramedics asked if I wanted to try the KT tape. I kind of snickered and said sure. Well-after a couple hours my wrist did not hurt at all. My tape stayed on about 10 days. I have had no pain since. That was 3 months ago. I have watched You Tube videos of this Magic Tape and it is amazing. A friend has some weird foot thing and wears what I call a racing stripe up his leg-and the pain stops. It may not cure-but try for some pain relief. Or at least google for the info. The tape for scoliosis is mind crazy.
Dana. My grandma had BC at about that age. Many years ago though. My parents were already deceased from their Hodgkins/Non-Hodgkins. Had a sit-down with the oncologist and discussed the options. He agreed to bypass invasive procedures and go with wait and see approach. My grandma lived another-I think 15 years waiting and seeing--with no problems. A spry old chick who helped take care of the "old folk" at the nursing home in Iowa. I wish the same for your mom.
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lee, Dana and pbrain, on top of my Aunts BC diagnosis, she has been diabetic for decades. A couple years after the BC diagnosis, they found a tumor in her bladder, she had surgery to remove it, and then went through a chemo wash in the bladder several times before it through her into a heart arrhythmia, and her blood sugar was off the chart, and she had a pacemaker put in. And she is still going. My mom isn't far behind, although her solution is to not tell me anything that is going on with her medically. Drives me crazy.
My aunt was on the diabetic drug for years that they think can cause bladder cancer, and the the doc pretty much admitted that he didn't research enough how the chemo wash affected diabetics. Apparently not good.
Lago....why not start your own company and freelance? Maybe you can meet with marketing folks that need graphic designers but can't out them on staff? One of the organizations I worked for did that. He worked for us for awhile, then left to do his own thing, so we continued to used him on a project basis. It was a great arrangement.
And here in Indianapolis and around most of Indiana! seems like everything is starting late. I'm so over the cold. I have to go back to the foot doc tomorrow to have bandages changed and my first pt, which I suspect is going to hurt a lot! Contemplating a pain pill before I go.
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fluff I have been freelancing. The issue is finding clients. I have not been busy enough to make a living.
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Lago, have you tried a temping agency? Not the greatest idea but I worked for one for two years awhile back. I even could have gotten life insurance because they kept me pretty busy. But things are not the same as back then but it might be a place to try. Good luck.
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Registered with several temp agencies. Things have changed at temp agencies. They are mostly very young. They are placing the younger people. Granted I am getting some bites with the design temps but very short gigs. Just started with the other non design temp places. One won't get back to me because I'm signed up with the design side so they only see me as a designer. The other it's only been 3 weeks. Need to give them a little time.
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Hey guys - I've been MIA lately - January has been busy. I plan to go back and read through to catch up, but I need to do some crowd-sourcing . . .
Met with MO on Jan 2 about ovarian cyst - she wanted me to see an OB/GYN to deal with it. OB/GYN ran a CA 125 and when it came back slightly elevated (41) she wanted to confer with GYN ONC who I saw today. He wants to remove the solid cyst on my right ovary (and possibly that whole ovary depending on the size / location of the cyst). He also mentioned that removing both ovaries, and / or my uterus were options (I've been having lots of irregular bleeding since starting tamoxifen - who knows if it's just the cyst or something else . . . ). I don't really want to have more surgery, but I don't want to spend the next 10 years on tamoxifen having to get endometrial biopsies every 6 months, and constantly worrying . . .
What do you think?? be conservative and just let him get the one ovary and then sign-up for lots more icky monitoring and biopsies, get rid of the ovaries (so I can come off Tamoxifen) but leave the uterus? Take uterus and ovary with the solid cyst but leave the other ovary . . . so many options . . .
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Are you for sure you can come off tamoxifen? And then go on A.I.'s? The only thing i have heard some women say, women that i have known, about taking out the uterus, is that it reduces the "depth" and quality of orgasms. this was older women that i have known, when doctors were doing that to women, about as frequently as they were handing out valium scripts to them, too women who are in late their 70's early 80's, now. friends of my mom's. come to think of it, though, remembering their husbands.....eeeew. Monitoring is bad enough, but i never want another biopsy, anywhere, anytime, again. EVER. Wow, i don't think im helping here. take a little time to listen to more brilliant people? and yourself?
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McK,
I had my ovaries removed and kept the uterus. I was going to just have the whole sha-bang out...but then after extensive research realized it would be trading one set of issues for a whole other set.
The uterus acts as a sort of foundation stone for the lower abdomen. When they take it out, things fall to fill the void (eventually the rib cage looks like it is sitting on the hipbones). I've read research that says between 50-75% of women have problems (prolapsed bladder, etc) within 10 years of having it removed.
Some women don't have a choice. But if you do, you might want to consider the new potential problems you will have. The whole, if it ain't broke don't fix it mentality.
My recovery for the Ooph was less than 2 weeks, and my surgeon said an Ooph solves most all "female problems"....including with a uterus prone to cysts etc. It's the estrogen that causes the uterus to misbehave.
I had my Ooph in 2012. (Pretty sure, ha!) Not a single problem since and I STAYED ON TAMOXIFEN! I don't like the AIs and what they do to the bones.
Hope this helps
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One more thing...I don't know how active your sex life is and how it correlates to quality of life for you...but once the ovaries are gone...sex is painful. I've tried everything and there's just no getting around the fact sex pretty much sucks now. It appears women who keep even a single ovary have enough estrogen to keep things "elastic"....but once they're gone....ugh, not so much.
Would I do it all again?
I honestly don't know. I thought I could get lube and it'd be all good....but w/o estrogen the vagina loses elasticity and lubrication, it atrophies! Which is a really weird way of saying it becomes zombie like! buwhahahahaha.
I do use DHEA vaginal inserts prescribed by my Onc...helps a little bit....probably not enough to justify the expense...
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Hi Tonlee, good to hear from you!
Thanks for yet another interesting discussion here... another one of those issues that raise the question "why IS it that so often we know more about what doctors think than we know about what we collectively experience..."
So I will throw in just one moer personal experience here.
About 4 years prior to dx with bc, at age 47, I had a partial hyst for fibroids, leaving in the ovaries and the cervix but removing the uterus. I had no problems. Tamoxifen after chemotherapy 5 years later ended my sex life.
One question I do have is about the vacant area left in the body after a hysterectomy. I have wondered whether it then becomes an area for additional storage of intra-abdominal fat accumulation. Intra-abdominal fat is thought to be more dangerous than extra-abdominal fat.
It is emotionally devastating to SO casually not be told in advance what changes cause the loss of sensuality/sexuality and gender.
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Hey Alaska!
Been super busy....I really hate being the one to tell someone about the "Cons" of an Ooph or hysterectomy. But believe women should have ALL the information before making a choice.
Glad to see you!
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TonLee - I for one really appreciate your advice on this. I really agree that one should know all the pro's and con's before making a decision.
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Hi TonLee it seems like it's been a while.
I 100% agree all pros and cons should be put on the table and whatever they do should be the least invasive as possible. I realize some have no real choice in what's to be done. But the more they do, the more it catches up with the internal mechanisms of our bodies--We're made of al separate parts for a reason and sometimes we have to loose some to survive but I think it takes a toll on our bodies--so 2nd opinion always sounds good to me and if needed a third one.
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Wow, cami! good answer! i knew you were smart! (((HUG)))!!!
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Wow thanks TonLee. It's good to here from you. My OBGYN is pushing me to have a total hysterectomy I really don't want it even though I was 68% estrogen positive. Chemo and Tamox did enough to me and I want a sex life yet I turn 46 this weekend that is to young to say it's over.
I did have an oblation done back in 2009 to stop my monthly however it did not work it made it lighter and less days. Totally stopped since chemo and then all of a sudden this past Dec started to spot for a few days now nothing again. Anyway my OBGYN tells me I will have to have a D&C done every year to check for cancer because of the oblation in 2009.. Or get the hysterectomy and will be better of because of the breast cancer being estrogen positive... I am really leaning on not doing anything yet and I also want to stay on tamox not an Al. I know I am taking a risk but I want to live a little and try get my sex life back on track for a while then maybe in a year or 2 think about it.
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ang7894 - just do what you feel is right for YOU.
I am also still in my 40's and not ready to let go of my female bits. So many of us fight so hard to keep our breasts and I feel that my uterus and vagina are just as important to me.
If it's any help - I was over 90% E+ and when I had a slightly suspicious cyst on my ovary last year my gynae said "whip it all out" and my MO said "don't because it makes no difference to long term survival and you could end up with more problems". In the end I signed the surgical release giving permission to remove just the cyst and nothing else. The gynae warned me that if the cyst turned out to be malignant I'd need more surgery and I accepted that. The cyst turned out to be benign...
Jenn
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