I'm coming out... :)

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Coolhart
Coolhart Member Posts: 21
edited June 2014 in Just Diagnosed

Hi everyone..I have been reading posts and gathering information that has helped and overwhelmed me at the same time..first let me say..the " Coolhart" is a combo of my maiden and married names. :)

I'm 41 years old, married and mom to two children (10,8)

Everyone here knows how up and down and roller coaster ride this Is..I feel like I can't breathe sometimes. I was diagnosed with ILC that they found on a routine mammogram. It is < 1 cm Grade 1Hormone  receptor + (both estrogen and progesterone) HER2 negative. Not in lymphatic system and lymph nodes look good on ultrasound and MRI of course they will test them during surgery. I haven't had a Pet Scan and everyone ( or so it seems) is asking me why I haven't yet..

I have decided to have a double mastectomy even though the MRI showed nothing on Right breast..my mother was diagnosed  22 years ago and I just want to get both removed. I am waiting for BRCA test results and awaiting a surgery date. 

Anyways, I wanted to introduce myself and have read over and over how the waiting is the hardest..boy you aren't kidding..I go to sleep thinking about and wake up thinking about it. I want to go back to going to sleep thinking what my 2 kids days look like tomorrow instead. I know I have to put on my big girl pants and get on with this but man it's hard..well thanks for listening and being so welcoming and informational..this has given me a " release" ..trying to remember to breathe..

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  • miss-marsha
    miss-marsha Member Posts: 28
    edited March 2014

    Hi Coolhart,

    So sorry you have joined the club, that nobody wants to be a member of! I have never had a pet scan. When I asked my Oncologist about it, she said it was like exposing yourself to 100 x-rays all at once, that is SOOOO MUCH RADIATION! I think your sleep will slowly return to you, I turned to ambien that first week. Once I had all the test results back and knew what my treatment plan would be I didn't need sleeping pills anymore. Good luck to you! For now, just breathe... The waiting was definitely the hardest part for me, too many "what if's"              

                                                                                                   Peace, Marsha

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited March 2014

    Welcome Coolhart. Im glad they were able to diagnose it from a mamo. ILC tends to be hard to find. Xanax worked for me that first month. I did have all these tests and I agree its a lot of radiation. Once you get a plan everything will happen at once. Do you want to do reconstruction? You will probably want to plan that from the start when they do the bilat mastectomy.  Good luck.


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  • wenweb
    wenweb Member Posts: 1,107
    edited March 2014

    Coolhart,  Welcome, (and as miss-marshall said) to the club that nobody wants to join, (and my addition) going on a trip that you don't want to go on!!  The waiting is the most difficult part, as is telling those whom you love and care for.  I made my husband tell all of my family members (with the exception of my mom).  It is hard to get the words out.  It takes a while to process all of the information and accept that you have been given a cancer diagnosis.  It will happen :(  And, it will become easier.  

    Best Wishes!!

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  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    hi coolhart - welcome to BCO even thought this is not the best place to meet friends. but ppl here are real supportive...

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  • Coolhart
    Coolhart Member Posts: 21
    edited March 2014

    Thanks Everyone...yes I'm planning on reconstruction. I have already met both surgeons and meet my oncologist on Friday. I need to get it together..some days I'm like " I got this..I can do this..I'm good" and others I cry. I know it will get easier..I'm just looking forward to that day..thanks again :)

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  • juneping
    juneping Member Posts: 1,594
    edited March 2014

    it gets easier....i just cried couple days ago...it happens and we are only human.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited March 2014

    Coolhart, 

    Cancer dx is hard to accept & endure. I also have lobular. I did not have a MRI, and I only had the PET Scan because I had so much cancer in the nodes. They were definitely looking for mets. Hopefully your nodes are clean. It sounds like they are. Also you might not need chemo. 

    There are several lobular threads, with knowledgable ladies that post. There are links to studies that are specific to lobular cancer. 

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  • AndreaJ50
    AndreaJ50 Member Posts: 889
    edited March 2014

    Welcome to your  new "soft place to fall"!!! 

    Lots of people care, but only those who have heard "the diagnosis" truly get what you are feeling, first hand.

    Best advice anyone told me here was to just Breathe! Everything is so new for you, and such a shock, no doubt. But it is true that it gets easier to cope, and you will cry less and smile more as time goes by. I am sure everyone here would like to turn back the clock to before they got the news that changes everything. But you will be surprised at what this journey will give you too. You are much stronger than you ever thought, and there truly are blessings all around you.

    For now though don't be afraid to come here for support, or to vent, or to share your news or ask questions. But remember...Breathe!!

    Take care,

    Andrea

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  • Okiemomof4
    Okiemomof4 Member Posts: 54
    edited March 2014

    Hi Coolhart,

    Again, welcome to the club no one wants to be a member of. But this forum is so wonderful. The ladies and gentleman on it are so supportive. There's just something about talking to someone who really gets it. Your friends and family can be super supportive, but they don't always get it.

    I didn't have a pet scan either. I didn't have lymph node involvement so I think my onco didn't want to expose me to that much radiation.

    Be kind to yourself. Take it one step at a time. You will feel better after you have a plan. And ask for anti-anxiety meds if you feel you need them. They can really help during the time of uncertainty. I promise you will get through this!

    prayers!

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  • Lojo
    Lojo Member Posts: 303
    edited March 2014

    Coolhart,

    Your situation and mine are so similar... it gets easier. I'm 41, dx in the fall, mother who had BC, lobular, two kids about the same ages as yours ... 

    I had a chest x-ray, abdominal CT scan, bone scan and MRI but no PET scan.

    You'll get through it.

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  • Coolhart
    Coolhart Member Posts: 21
    edited March 2014

    Thanks everyone..I appreciate all your kind words and support. I feel like I'm noticing every ache and pain and think the worst immediately ..did anyone else do this? I ask because it's nice to know if I'm going crazy or not ;)

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  • JaMan
    JaMan Member Posts: 6
    edited March 2014

    I'm 3 months post-surgery and still 'coming out' to friends and co-workers. That to me has been the hardest part. (This is my first post, so I'm still sort of hiding.) I agree with the others, the waiting was horrible.

    Also, I'm a runner, and although I'm happy to be running again, I am so slow, it's very discouraging. Anyone with post-implant running experience, I'd love to hear about it.

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited March 2014

    Coolhart, you are not crazy, but I know it feels like it. When I was first dx, my legs felt like rubber. I kept thinking I would buckle. I walk in races, half marathons. So, I knew it was all stress, anxiety, but my body was a noodle. It is a slow process, I was dx last July & still in disbelief some days, but trying very hard to get back to a normal life.

    Keep posting, we all have been there or still there...

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  • Coolhart
    Coolhart Member Posts: 21
    edited March 2014

    does anyone know if it is a good sign the lymph nodes look normal on ultrasound and MRI..would they look different..I know they won't know for sure until surgery but was wondering if anyone knew..they told me it was but my mind is racing..I keep telling myself the " good things " we know..one minute I'm ready to fight fight fight and the next I can't breathe.

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  • Dancermom1999
    Dancermom1999 Member Posts: 122
    edited March 2014

    Hi Coolhart:  My lymph nodes looked normal on the MRI also...my doctor said that it was an 80% chance that there was no cancer but of course would not be able to know for sure until surgery.  My lymph nodes turned out to be clear...think positive...odds are very much in your favor.  Best to you.

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  • msphil
    msphil Member Posts: 1,536
    edited March 2014

    sweetie, that is what we are here for to listen and help when we can, we know what u are going thru, been there, and all your emotions are what we felt well I know I felt them, and all while making wedding plans,I was so overwhelmed and had my cry and felt sorry for myself and then I went on to fight for my life, and with my Faith and family support, I am now and 20 yr Survivor(Praise God) this year.msphil (idc,stage 2,0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen)

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