The Hermit Club
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I understand that pec muscles can be removed more often with ILC due to the way it grows in order to get clear margins.........sadly Wallan I have been fighting for 5 years so far and very focused for last 3 years..........so I have no illusions......good luck on Wednesday........hope you don´t need chemo this time
xx
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Wallen and Lily- thanks for explaining this to me. I know ILC is a different animal, have another friend here who had it on both sides, BMX, clinical trial and more.
Wishing everyone here better days. Something has to give......
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nice Teka. The beauty of life.
wallan
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Teka- cut up apples for that cutie pie! Hungry!
Wallen- yes, how did your visit go today? We are here to listen if you want to talk......
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Staying indoors today. Raining again
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Hey ladies:
I loved my oncologist. She was direct and compassionate. Just the kind of person I want to treat me.
My 5 little tumors are 100% ER+, 80% PR+, Her2-. I had DCIS and LCIS. 2 IDC tumors and 3 tiny microinvasive ILC, grade 2 with a 1/3 mitotic index, node negative. The MO said the mastectomy was the correct treatment choice. She is sending for the oncotype DX test but she highly doubts I will need chemo or radiation because margins were clear. She said if this really is a new cancer my prognosis is excellent.
The question is, is it a new cancer? The MO said there is no way to tell really and it is concerning that it is my second cancer with similar biology to my first cancer. It is not "mets" though. It is new tumors, but clearly my genetics is wonky. So I am getting genetic testing now. The oncologist honestly admitted there is no way to predict my prognosis. They just don't know.
I am very happy that I will likely only need hormone therapy. She is putting me on letrozole for at least 5 years once the oncotype Dx test returns. This will take about 2-3 weeks she said to get results back. So a bit more waiting, but I feel much better that I know more of what I am facing.
I see a radiologist on Friday for another opinion about getting radiation since there is always a little breast tissue left over after a mastectomy.
I also am going to get a bone scan - MO said I am at high risk for osteoporosis since I have had no freaking hormones for 13 years
wallan
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Wallan- I am so glad to hear you like your MO and that you got a lot of good info yesterday. It sounds like you got confirmation from the MO that the surgery type was the right type for you. I have heard of several sisters here who ended up with a cancer in the other breast, often different than the first. And glad there are no mets to any other place, whew!
I am glad they are doing the Oncotype test for you. They often do if there is no node involvement and to help with chemo decisions. My results did not suggest I needed it, I hope the same for you.
I also had genetics testing and will just advise you in advance to be sure they get the proper approvals for those so you don't have those labs chasing after you for payment. I have been through three iterations of testing and the last 2 labs have come after me for payment. We got it worked out, but it was a hassle. Nothing came up in those tests as positive, but if genetics are suspected, this is good to know. It will help you to know if certain genes are involved and if you may need to be thinking about anything else or sharing that with sisters, daughters, etc.
And yes, if you have not had a bone density test to check on your bone health in awhile, good to do before you resume the AIs. Please ask your MO about Prolia or one of the other bone building drugs to help keep your bones strong. I have been doing Prolia for two plus years now and it is one of the best for cancer patients. The same drug (denusaub) is used at higher doses for bone cancer treatment. I started a thread for Prolia awhile back and will share that link with you if you end up doing that.
I think you had a very successful visit and will be here to hear the results of your next tests!
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Hey ladies:
I do not need any radiation! yeah!!
But, the radiologist told me only one tumor was measured for hormone status and her2 status. I was shocked and questioned her. She said to question the oncologist more thoroughly. All the tumors should be checked. All five.
I still do not have my full pathology report either. I do not understand why this is so difficult to get. I asked the oncology nurse for the report and she said she would print it off for me and I was to pick it up at the front desk today. But when I got it, it was only the first few pages.
Sigh.. I am going to my family doctor next week to see if he can advocate or something.
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That is fabulous news for you, so pleased----
I dont know how much longer I can keep going as found out today I have well over another two YEARS to serve on the waiting list for surgery.....I can barely see to type for tears.................I am really losing hope as I know if I get any kind of recurrence they won´t opérate and I don´t want to die as a mutant "female", especially when feminine is the last thing I feel.....I just want to feel normal and comfortable in my own skin again..................
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Lily55:
What do you mean a waiting list? For what surgery? (sorry for not knowing this)
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for reconstruction Wallan.............I am just in tears all the time now as I really cannot cope with another 2.5 years to wait after 5 long years of never feeling ok in my own skin, and it catches me out at odd moments, like middle of a Pilates or Zumba class when I see a cleavage, all the summer when there are all these people relaxed in swimwear and I struggle even to get to the beach as I am so self conscious and on it goes.......I needed an ECG and another heart test and was forced to remove my bra to be connected to a 24 hour heart monitor - result I was sobbing.....in front of the nurse, who thankfully was really kind about it and managed to disconnect me next day without me having to undress..........I am in tears now typing this......and Friends really do not understand, if I ever say how I trul feel about it they say I am negative or just don´t respond.......
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Hi Lily:
So sorry that you can't get reconstruction right now. It is hard to feel selfconscious. I felt self conscious for 13 years with just one boob. I would not go swimming or wear a bathing suit in public. And of course, no revealing clothing. It is hard to feel disfigured.
Hugs to you.
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Lily55, I don't know your story, but I am wondering why you haven't been able to get reconstruction? I know how it feels to be lopsided. My butcherversary is 5 years this July. I am reconstructed with a Prepectoral implant, and I still mourn feeling normal and comfortable. I feel better since having finally got the implant last year, but it often just feels off when I am active, like dancing. I realize that this is as good as it gets, but it still feels wrong. For the past 3 days I have had some abdominal discomfort which is radiating to my back. This scares me. I am trying not to let it freak me out, but I hate always having some level of fear.
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Jazzy is busy planting pots this weekend
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FLOWERS!!! *Bounce*
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Anyone interested in gardening should joins us on the gardening thread. Lots of great posts, ideas and more. Getting busier now too....
https://community.breastcancer.org/forum/7/topics/...
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A little hello from Jazzy's back yard.....
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Jazzygirl:
Gorgeous! And so sunny!
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Teka- good to see you here again! Been warm here too, usually up to 80 which is even warm for here in April. Been busy in the gardens too.
Glad you enjoyed some warmth and sunshine. I hope old man winter has left for good!
Saw this today and thought of you!
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80 degrees... how nice. I am jealous now.. LOL
we had snow just the other day. Its rainy today at least. Snow melted.
wallan
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I hope everyone had a nice holiday weekend for those that celebrate Easter. Wondering if hermits are finding their way out of the cave after the winter?
Shared this on a few threads, my claret cup starting to bloom
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It's been so warm in the house since Sunday that our heat hasn't even been on once. Was in the mid 80s Sunday. Don't think that I have ever seen it that warm on Easter in my life
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It is starting to warm up here in my little corner of Canada.
Its not 80, but its sunny and about 55 degrees. (13 degrees Celsius). My rosebush I planted last year is sprouting leaves.
wallan
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Gorgeous day here in the Nutmeg State! WOOOOO-HOOOOOO!!! We have a bird feeder out and just got a birdbath. Yay!!! LOVE to watch the critters!!!
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Whaling- ah the Nutmeg State, place of my roots. May is always so beautiful there and coming up fast.
They call where I live now the Land of Enchantment. Sometimes we call it the Land of Dysfunction. Depends on the day.....
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It's near 60 so far. May get up to almost 70
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Jazzy: May's one of my two favorite months (the other being October). To me, May's perfect here. Can't wait!
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6feet- agreed about those being the best two months in CT. I love April here, but Sept through early Nov are my fav times here in the southwest. I think the fall is good everywhere in this country, honestly!
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Just had a really pleasant surprise happen a bit ago. Last year I reconnected with a friend from my freshman year of high school and I asked her to remind me of when her birthday was because I had forgotten when it was. Well she told me the date and it didn't dawn on me until I was going through my list of upcoming birthdays and I saw that her birthday and my wedding anniversary are the same day!!! Talk about weird coincidences!!!!!
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mommy:
That is too cool.... synchronicity at its best.
wallan
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