The Hermit Club

wallan

Thanks Jazzygirl.... I needed the hug.

I am having my first consultation on Wednesday to see if Chemo is in the cards. It is likely according to my BS.

My pec muscle fascia was removed last time to get clean margins. I had a bad case of BC last time apparently. I'm lucky to still be here.

wallan

Jazzygirl

Wallan- I remember you said you had no node involvement, but sometimes the type of cancer and genetics (oncotype) will indicate if more is needed. I pray you hear something good on Wednesday friend.

wallan

Hi Jazzygirl:

Thanks. After the mastectomy, pathology found 5 tumors. Two were IDC 10 mm and 9.5 mm and three were ILC 3.0 mm. 1.1mm and 1.0 mm. Had clear margins on all. But BS said the cancer is "complex" and each foci can act independently of each other. So it depends on what the hormone status and her2 status are each for each one I guess. I was staged by pathologist at pTm 1b or stage 1. I will likely need radiation now too. They did book an appointment at the radiologist for Friday. Its a similar pattern to my last BC. I had multifocal disease then too. Am I freaked out? Yes.

wallan.

Jazzygirl

Wallen- dang sister. I hope it is not HER 2, my sister had that one and longer treatment cycle with herceptin. Looks like you had rads and chemo last go around.

I can see by your dx summary it is indeed complex. All different kinds going on there. We will be in your pocket on Wednesday friend.

How are you feeling otherwise?

wallan

Thanks Jazzygirl:

I am doing well otherwise. Energy is coming back from surgery. I have zings of pain now and then but otherwise pain free.

wallan

Lily55

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

Jazzygirl

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......

Teka

I am too a birdie!

wallan

nice Teka. The beauty of life.

wallan

Teka

wallan,

I hope your 1st consultation went OK?

Jazzygirl

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......

M0mmyof3

Staying indoors today. Raining again

wallan

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

Jazzygirl

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!

wallan

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.

Lily55

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..................

wallan

Lily55:

What do you mean a waiting list? For what surgery? (sorry for not knowing this)

Lily55

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.......

wallan

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.

Teka

*Hermits*

The following isn't so easy for thread members that live with BC misery............

macb04

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.

Teka

macb04, Hi and Welcome!!

I hope you're feeling less abdominal discomfort this morning.

Teka

Mud Season has arrived in the North Country!

Daughter and I enjoyed seeing in the movie theater............

Kong: Skull Island (2017)

Jazzygirl

Jazzy is busy planting pots this weekend

6feetover

FLOWERS!!! *Bounce*

Jazzygirl

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/...

Jazzygirl

A little hello from Jazzy's back yard.....

wallan

Jazzygirl:

Gorgeous! And so sunny!

Teka

Jazzy, the perfect pic of lovely tulips for Easter weekend. ;o)

*Good Morning Hermits*

Monday and Tuesday started Spring clean-up, but was sooo hot (80s) picking up sticks. I did feel chipper after soaking up sunshine.

Vitamin D............

Jazzygirl

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!