Just diagnosed. Never been more scared.

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varapappas
varapappas Member Posts: 8
edited January 2016 in Just Diagnosed

Sunday I woke up in the arms of someone I'd been seeing for a month. The night before we decided to be boyfriend and girlfriend. Monday morning I went to have a suspicious lump in my breast checked. I went in with high spirits. No one in my family has breast cancer, I have itty bitty AAs, I'll be fine. At 5pm they were telling me to mentally prepare for a double mastectomy. I went into hysterics. The next morning, MD Anderson, where I've been seen, called to ask me to sign a living will.

I've never been more terrified in my entire life. I was about to move home to San Francisco with a new job, I was starting a new relationship. I'm 33 and have spent years just learning to live with Crohn's disease. And surgery terrifies me. Surgery killed my brother at 32. He acquired an infection that lead to pneumonia and died.

Thursday I got a call with the needle biopsy report. IDC grade 2.

Next week I will be seen by doctors and given an MRI. The following week I will be having a stereoscopic biopsy in both breasts. I have a large tumor in my right breast (the lump i felt) and a smaller tumor growing nearby. I have lots of calcium deposits on the underside of both breasts that they intend to test. I am an ashkanazi jew and will be getting a brax test soon.

Currently this is all I know. Every time I look in the mirror I am terrified. What will my new chest look like? Will I have to endure chemo? Will I have hair? Will my new boyfriend be able to handle seeing me like this? Knowing my weak immune system and thin body, will I survive this?

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  • Mommy4two
    Mommy4two Member Posts: 10
    edited January 2016

    Firstly, big huge warm hugs. I'm so sorry you are going through this. It must be very difficult to have all that news all at once.  I'm not sure if it makes you feel better but my neighbour just started a relationship when she was diagnosed. She's had two mastectomies and they are still together happier than ever. I just saw her jogging the other day! If there is any positive here, it's that you will see how he acts in times of need and if HE is worth staying with. 


    Having an autoimmune disease on top of all this sucks. I have rheumatoid arthritis and the thought that I might have both diseases honestly pisses me off. But what I tell myself is that I have already proven to myself that I'm stronger than I ever thought possible and I can keep,doing that (although I'd rather not need to). You have already found immense strength, you are strong and brave. You can do this. 

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  • varapappas
    varapappas Member Posts: 8
    edited January 2016

    Thank you so much, Mommy4two :)

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  • reflect
    reflect Member Posts: 576
    edited January 2016

    Big warm hug from me too. It sounds like that all happened tremendously quickly and is just a lot to take on board. Please keep posting and let us know how you are doing. I understand that MD Anderson is the best, if that helps.

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  • mdg
    mdg Member Posts: 3,571
    edited January 2016

    Deep breaths..........So sorry you are joining our party. Hugs to you. I felt the same way - that was 5 years ago. I had the same worries, fears and questions. There are many options. Chemo was the hardest thing for me to imagine.....I did it though and kept my hair with cold caps. There are options. I had a bilateral mastectomy on my size A breasts. I had reconstruction done and I have a larger set now....the plastic surgeons are really amazing. You will be shocked to see what they can do! Take this one step at a time. I know it's hard...believe me! The beginning was the hardest part - too many unanswered questions and worries. As you get more information and a treatment plan, it will somehow be a bit easier. Saying some prayers for you! Hugs!


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  • Wildflower2015
    Wildflower2015 Member Posts: 279
    edited January 2016

    Hi Varapapas,

    I understand the storm you're going through as one who's newly diagnosed - we've all been there ourselves. It can be a bumpy ride until you get a firm diagnosis and have a treatment plan in place. I promise you that things will get better once you and your team have some of the pieces sorted out!

    Your all-important goal is to get rid of the cancer. I'll leave that up to the experts, your medical team. But I hope I can offer you reassurance on one side issue. Having chemo does not mean you have to lose your hair! There is a process called cold capping that works for the majority of people who try it. I and a lot of other women have successfully kept our hair during chemo through cold capping. There are several threads on this site - just do a search for "cold capping." You'll find an unmatched wealth of information on the topic and lots of support, if you end up having chemo and want to try it. Reading those threads might be a good diversion for you while you're playing the waiting game.

    Sending you a big hug! Things WILL settle down within the next few weeks. I understand that MD Anderson is one of the best facilities in the nation. You WILL get through this!

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  • varapappas
    varapappas Member Posts: 8
    edited January 2016

    @mdg what are cold caps?

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  • etnasgrl
    etnasgrl Member Posts: 650
    edited January 2016

    ((((Hugs))) to you varapappas! I'm so sorry that you have to join us, but glad that you found us as this is such a wonderful place for support, advice, and info.

    I just wanted to tell you that I get my cancer care at MD Anderson and it's a terrific place! You are in very capable and excellent hands. Every single oncologist that I have seen has been compassionate, professional, and extremely knowledgeable. The nurses are heaven sent as well!
    While I'm not happy to have cancer, I'm thrilled that I decided to use MD Anderson. Everything is under one roof......from nutritional support to mental health....all my oncologists are in one place and communicate with each other....not to mention the vast amount of clinical trials you can participate in if you so choose.

    You WILL get through this!

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited January 2016

    Hi varapappas!

    I'm so sorry to hear you're having to deal with breast cancer on top of all of the other changes in your life. Even when they're happy changes, job changes, moves, new relationships...they're all stressful. But your cancer diagnosis doesn't necessarily have to derail your plans. As Mommy4two pointed out, you're going to quickly find out a lot about your new boyfriend. But with so many moving pieces, I'd suggest finding someone you can talk things out with. A social worker or therapist, might help you think through not only the cancer issues, but what else you want.

    You mentioned a new job and a move...do you already have a start date for the new job? Have you given notice at your current job? Are you moving to be with new boyfriend? Are you moving away from family/friends? returning to family/friends? All those might have an effect on the choices you ultimately make.

    I'd find out what treatment will mean before changing your plans. Because you don't have to stay in Texas to be treated (unless of course you want to!). They have good treatment facilities in San Francisco, and I'm sure that MDA can either refer you, or transfer your care after your surgery, or even prepare all of your treatment plans to be carried out by local oncologists. (MDA does that for cancer patients from all over the country.) You simply need to decide what you'd like to do.

    On the cancer diagnosis/treatment. It sounds like there's a pathology report out there (from the needle biopsy that reached the conclusion that you have IDC grade 2) that you don't yet have a copy of. [BTW, just in case there's any confusion, grade 2 refers to how much the cancer cells differ from normal cells/how quickly they divide. The scale is a range 1-3, yours is in the middle. Your cancer can't be "staged" until they know more about it...generally after surgery. From what you know so far, you could be Stage 1. It's simply not possible to know based on the needle biopsy results you have back so far.]

    You've had experience dealing with a serious illness, so some of this will be very, very familiar to you. Plan to get copies of everything. There will be imaging reports (and disks of the actual images), procedure reports, pathology reports, test orders, test results & and office notes. Ask for copies of everything. While MDA is very integrated, if you need/want to get a second opinion (or see a doc who isn't part of their system), you'll want to have your own copies not only to study yourself, but to supply to the second op. doc when copies you've requested be sent don't arrive as scheduled. (It happens more often than you think!) For example, if you've had blood tests yesterday, but the doc you're seeing today would like blood tests, often showing them the results from yesterday's tests (that you have) means one less set of tests!--or at least allows them to look for changes.

    At some point in the next week or so they should be having a meeting with you to discuss their findings and proposed plans. You'll want to record that meeting (or meetings) if possible. If it isn't allowed, make sure you have a seconds set of "ears" with you to take notes. Are you the kind of person who likes to learn from books? websites? If so, there are books that can be helpful.

    You'll want to get the results from the BRAC test back ASAP, as it may change your views of what surgery to have. For example, if it was negative, you might be able to consider a lumpectomy. If it was positive, you would want to strongly consider mastectomy.

    There is time for you to sort out what is going on. Take a deep breath, organize and learn. Then get someone (who isn't emotionally involved) to help you think through it all.

    We'll help if you want us to!

    LisaAlissa

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  • varapappas
    varapappas Member Posts: 8
    edited January 2016

    These responses mean so much! Thank you!!

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  • Jujubee16
    Jujubee16 Member Posts: 28
    edited January 2016

    Oh hunny, my heart goes out to you. I promise you that the panic and fear you have right now will subside for the most part. I'm turning 33 tomorrow and I was diagnosed on 12/31. Nice way to start 2016. Once the big tests were done and I was given a team of doctors as well as a treatment plan the will to live kicked in. The fear was replaced with the instict to fight. The same will happen to you sweetie. Once the initial shock wears off you will start to see everything differently. Your health and life will take precedent over hair, boobs, everything. You're young, strong and beautiful. See this as the blessing it is. My aunt died of this disease because she found out far too late. You will beat this. You're one of the lucky ones. Please keep us posted on how you're doing and if you have any questions .....I'm a newbie but I research everything lol...the student in me. I'll be happy to help answer anything I can. We are women....women are creatures of beauty, wisdom, love andoing strength. Can't wait until both of us post on here that we are cancer free. God bless you and stay strong...one day at a time xoxo

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited January 2016

    I think, but not 100% sure there is a cold cap thread. You wear cold caps during the chemo infusion, supposed to help prevent hair loss. I've heard women ice their fingernails to help prevent problems there too. This info came too late for me, have no first hand experience.

    If you and the new bfare meant to be, it will work out.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited January 2016

    Hey lady, just joining in here to give you some encouragement. Sounds like you have a lot on your plate in addition to stupid cancer! Good thing you found it and are getting it taken care of. It might not seem like it now, but that is a lucky thing! I was diagnosed at 34...so I get where you are at with all this. As scary as it really is, believe that you will come through with flying colors! You are young and the odds are in your favor. Sending good thoughts- as you find out more and get a plan in place it will start to seem like just another job, I promise!

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  • NoWhyToIt
    NoWhyToIt Member Posts: 87
    edited January 2016

    Hi--I hope all your test results are coming back with positive news. Hang tight until you have all that. I am 2 years from diagnosis and it was very bleak for me. Lots of nodes, Stage 111, etc, and I am really feeling fine now. All the chemo and scary stuff is behind me and you would never know it happened. Seriously, even my hair is back to mid back length. Try to think of it all as temporary. Just a bad period ahead but then it will all be over. So many women make it through it all. And don't worry about anyone else but yourself.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited January 2016

    Varapappas, don't be worried about the living will.....everyone asks about that.....don't that personally..and also there is a group on here for the type of Jewish woman that you are.


    Best wishes for you and hopefully everything will work out smoothly for you. We know that are scared. When your plan is in place, it does get somewhat easier

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  • msphil
    msphil Member Posts: 1,536
    edited January 2016

    hI sweetie i was diagnosed while We were preparing for Our wedding 2nd for both then at 42 while in shower i found the lump i thank God He had sent me the man who would stand beside me thru all this n i had Lmast n we have been married for 22yrs this yr couldnt have sobe it without his support so i pray that ur man is also there for u im also 22yr Survivor we got married as planned. msphil (idc stage2 Lmast chemo rads 5yrs on tamoxifen).


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