so lost, need help with my new diagnosis

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  • april485
    april485 Member Posts: 3,257
    edited June 2015

    Just wanted to send you young ladies dealing with this beast a hug. You don't deserve to be going through this at a time in your life when weddings and babies should be your focus. I hate cancer! It shows no mercy to ANYONE for any reason.

    Now that I got that off of my chest, please listen to your doctors when they tell you what you should do and then get another opinion and make your decisions based off of facts, not off of fear. Hugs!

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  • tshire
    tshire Member Posts: 239
    edited June 2015

    Justmaximom, don't worry I have been in therapy since his death. It was very traumatic for me. I tried so hard to help him, I organized benefit concerts and raffle nights getting donations from local businesses and raised $6,000 in two days for his care because he was uninsured. He passed away only 6 weeks after his diagnosis. I always wished I could have done more to help him. I miss him so much, especially now. Needless to say, I do have anxiety issues which have been greatly heightened since this diagnosis, and the Xanax prescribed is helping me.

    I spoke with my breast surgeon this morning too, and she is trying to get me into a conference (medical oncologist, radiation oncologist, and genetic counselor) tomorrow afternoon. If not then, Tuesday.

    She had very good news for me- NO evidence of lymphovascular invasion. Nottingham score 5, tubule score 2, nuclear score 2, mitotic rate score 1. Still no news on receptors and Ki67.

    It had a long explanation of the microscopic examination but I didn't really understand it and my doctor said they're just stating their findings of how they came to their conclusions. I did notice "no significant inflammatory population identified" "no necrosis seen" and "showing only mild nuclear enlargement and hyperchromasia." Also "the infiltrative-appearing glands show no p63, CK5/6-positive myoephithelial cells." If anyone knows what this means I'd love more info.

    She said my case is "cut and dry" and "not an emergency." She says she has no reason right now to think I will need chemo. She supports my inclination for a double mastectomy.

    Feeling so relieved. I know I'm not out of the woods yet, but I feel like I can see some light.

    Thank you all so much,

    Tiffany

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  • Trvler
    Trvler Member Posts: 3,159
    edited June 2015

    Tiffany, do you know if you are ER, PR and HER +?

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  • tshire
    tshire Member Posts: 239
    edited June 2015

    No, still no results on that. Should come in today or tomorrow.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    All really good thoughts. aored77, just wanting also to welcome you here, and say that we are really sorry you joined the club nobody wants to. We´re all here for you to help you make sense of things.

    to all of you.

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  • speace
    speace Member Posts: 116
    edited June 2015

    Hello tshire, I'm sorry you have to join this club we are all in. But this site has given me such great advise and inspiration. Right now your going in 100 different directions! I know , I've been there also! First, take a breath and slow down a bit. I've been learning that everything in this process is done in steps! And as much as you may just want to jump into a double mx. Don't be so quick to decide yet. You don't have all your info yet. As much as we want to go right from diagnosis to immediate treatment and then finishing and getting on with our normal lives it just doesn't happen that way. All done in steps. I'm almost done with my radiation and I have to say it's been a breeze! I researched my ass off about radiation treatment and the effects of it. And I can tell you it has come light years from your grandmother's radiation. It's safe, it's pinpoint precise. And custom made for your cancer!!! So don't run from it just yet!. I wish you all the best, please take a deep breath, get some xanax, it works wonders in slowing your mind a bit! And before you know it you will be on that track of treatment and the end will be in sight!! The happy living a good life, not the End of your life!!! Lololol

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  • speace
    speace Member Posts: 116
    edited June 2015

    If it makes you feel any better , know someone around your age who has bc. Stage 3 went through treatments and just had twins a month ago. There is lots of hope on the horizon!!

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  • footprintsangel
    footprintsangel Member Posts: 43,890
    edited June 2015

    I am a stage 3 had treatments surgeries and other cancers

    I stayed positive and said I can beat this! and kept a journal.( The journal was grateful in front and in back what I went through.

    just went off my cancer meds and I know You can do the same.

    Please try and stay strong, it will help you alot

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  • tshire
    tshire Member Posts: 239
    edited June 2015

    Update: ER+ 98%, PR+83%, HER2-. Good news I guess, except I will be going into menopause at 31. :(

    Other bad news was that my Ki67 score was 34%, high. My mitotic rate was 1, grade 1 overall, so I am super confused about that. My MO said that was unusual but she makes the chemo call on the Oncotype score though, and Ki67 is a big factor in that. I was really REALLY hoping to avoid chemo. Of course I want to live so I'll take it if they tell me to.

    I guess I am vain, I just really wanted to look beautiful on my wedding day in 9 months.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited June 2015

    tshire, hey I'm so sorry you are dealing with this befor your wedding. But it's 9 months off..odds are good you will be looking and feeling pretty perky by them. Check out the look good feel better classes that the American Cancer Society puts on in the mean time during treatment. They tell you how to fix your makeup, draw on eyebrows, lashes, etc. If you do do chemo and lose them. You can fix yourself so no one would ever guess what you are dealing with. Best of luck, lady. Hugs! Ps I'm 34...

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  • Trvler
    Trvler Member Posts: 3,159
    edited June 2015

    You're not vain, Sweetie. You're just human and young and you got dealt a crappy hand. I am sorry. When will you know if you have to have chemo? I am guessing you would do the same as me, AC+T. Come join our group if you need to. Hugs. Also, look into cold capping. At very least you could save your hair. There are threads about it on here.

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  • tshire
    tshire Member Posts: 239
    edited June 2015

    Another update- I went to a new breast surgeon yesterday and she did an ultrasound on my left breast- something no one had done before! Only mammogram, which showed up clear in both breasts. Ha.

    She found "something." Distortion, she said. I'm getting an MRI today, but I imagine if it's picked up on ultrasound it'll be picked up there too.

    If it's another cancer I don't think I can handle it. Please pray for me.

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  • Trvler
    Trvler Member Posts: 3,159
    edited June 2015

    Consider it done. Good luck.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2015

    Please let us know how it goes tshire. Keeping you in my prayers.

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    We're thinking of you tshire

    Sending gentle hugs your way



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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited June 2015

    I'm so sorry you're dealing with this, especially so young! I just wanted to encourage you a bit about the "something" in the other breast. I had the same thing happen, found IDC in my left and my tissue was so dense everything looked ok in my right, but then the MRI found another cancer in the right. It's not as bad as you might think - you're already leaning towards a bilateral mastectomy, and the staging of the cancer goes by the "worse" side, which is most likely going to be the one you already know about. I pray it's not another cancer, but please don't worry that it will make this whole terrible cancer experience much worse than it already is!

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  • tshire
    tshire Member Posts: 239
    edited June 2015

    Thank you for you kind words, thoughts, and prayers ladies! I'm so happy to report they found NOTHING ELSE anywhere- including lymph nodes! They said NO LYMPH NODE involvement seen. They're still going to do the sentinal node biopsy to make sure nothing microscopic is in there, but right now there are no tumors visible anywhere besides the spot they already knew about! And that spot is about the same size as before, my doctor said the .3mm increase is probably due to the biopsy/swelling/scarring.

    This "journey" is more like a roller coaster ride of emotions!! I still have the small tumor on the right but I'm so RELIEVED it's nowhere else!

    Thank you all so much, will keep y'all updated! Have a consultation with MD Anderson coming up next week, then we'll set the date for surgery.

    Tiffany

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2015

    Great news Tiffany!! Thanks for keeping us up to date!!

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  • shorfi
    shorfi Member Posts: 791
    edited June 2015


    Good news!!!!

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  • tshire
    tshire Member Posts: 239
    edited July 2015

    Update: Lumpectomy scheduled for 7/13. Also got my genetic results back- negative on all the "big 5" for BC in young women: BRCA1, BRCA2, CDH1, PTEN, and TP53.

    So I guess this is just some freak thing that happened to me. Or I guess it could have been the 10 years of birth control pills I was on, or my love of estrogen-rich dairy, or the extra 20lbs I never lost after college, or that I didn't exercise every day. Or I'm just incredibly unlucky.

    I just can't believe it happened at 31.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited July 2015

    Tshire: It is NOT YOUR FAULT. They really don't know why it happens, although one breast book I have read posits a theory. Because our breasts are able to pick up estrogen from the environment, and that is not something we have any control over. I am so sorry, and I hope I don't offend you by saying you are really much to young to be dealing with this crap.


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  • tshire
    tshire Member Posts: 239
    edited July 2015

    No not offended, I totally agree I am much too young. None of my friends have ever had breast cancer. The one friend I had with cancer is dead.

    One friend, trying to be helpful I guess, sent me an "inspirational" book about breast cancer from the mid-90s where the woman died in the end. That didn't help.

    The support groups for young women seem to be mostly for women with the genetic mutations. I still feel very alone. I still cry every day. I don't know if this will ever stop. It has to, right?

    Sometimes this board scares me, especially when I see older posts and look at the Dx signature line for the posters and realize it came back for them, often much worse. Or that it seemed not too bad at first but then....

    Sometimes it helps, like your posts, Tomboy. That Leonard Cohen quote really spoke to me. I had already planned to walk down the aisle to "Hallelujah," and now it seems even more fitting. https://www.youtube.com/watch?v=Q-jMGvvMoAg

    I have always been such a control freak, and now I realize that I have no control. I guess I never really had any.

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2015

    I am so glad you have had good news on the other possible cancer. And no nodes!!! That's great news! I am really happy you decided to have the lx. I am older than you but I can understand how you feel about the coming back thing. And the control freak thing. Hugs.

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  • tshire
    tshire Member Posts: 239
    edited July 2015

    Yes, no nodes on MRI is very good news. I pray to God they stay clear for the surgery. Please keep praying for me, if you can. This morning I woke up and I thought it was a bad dream, then I realized it wasn't. That's so hard.

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  • Trvler
    Trvler Member Posts: 3,159
    edited July 2015

    I know. I know how hard it is. Hugs.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited July 2015

    YAY, NO NODES!! I do hope they stay that way, permanently! This is the hardest part, I think, the beginning... it's just all so strange and weird. But eventually, you will feel like an old hand at it, and you yourself will be calming another woman's fears, you will see. But this time is for you, and be as gentle with yourself as possible...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    Happy to hear no node involvement was detected on your tests!

    This beginning part is very difficult. Once you have your treatment plan in place it does get better. It can be very overwhelming with all of the information coming at you at once. When I was going through treatment, I played the games on these boards. It really helped a lot, plus I got to meet some really wonderful ladies. I tried to keep my mind distracted so I didn't think too much.

    Remember, you are not alone in this....we are all here to support you. Keeping you in my thoughts and prayers.

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  • tshire
    tshire Member Posts: 239
    edited July 2015

    This is probably crazy, but I just had a terrible thought.... what if the distortion seen in the other breast on the ultrasound is ILC? And the MRI missed it? Is that possible?

    Pre-op tomorrow. I'll ask the surgeon then. Scared.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2015

    tshire, I've found the most difficult part of this process for me has been keeping my mind from wandering to the worst case scenario. Nothing has been more difficult for me than that. I'm learning to take things as they come and not anticipate. Speculation at this point will just drive you crazy. I know it's easier said than done.

    Write down all of your questions and ask tomorrow at your appointment. I keep a pen and pad right next to my bed. When questions like that come up, usually in the middle of the night, I write them down and do my best to forget about them.

    We will all be in your pocket tomorrow. Please let us know how it goes. Gentle hugs to you!!

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  • Beachbum1023
    Beachbum1023 Member Posts: 1,417
    edited July 2015

    tshire, try to deal with what you know 100%, and don't look for the what if. You have plenty to deal with. Ask the surgeon for their advice and let them guide you. Everyone here can second guess, and let their mind go "there", but don't. And we are all scared, but knowledge is power, and the more control you have the better. Do you have a treatment plan yet? And you are not crazy, just try to relax, and catch your thoughts. I wish you well. Cheryl

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