Diagnosed 3 days ago...seems like weeks

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PatsyKB
PatsyKB Member Posts: 272

I don't really have a question at this point (but I will, you can be certain of that!) but I wanted to join in now, before things get crazy.

43 years ago I had my first of several biopsies - never a cancer diagnosis until this week. IDC, Grade 1, and so far I don't know much else as we are waiting for the HER2 analysis. My cancer is ER+ (99%) but PR 0. I have an appointment with my surgeon on April 24 and I am looking forward to learning more and moving forward to the next step/steps...whatever they may be.

So far I am sharing news selectively, with very close family and friends. I tend to be a pretty public, sharing person, but this one is my story and I'm trying to manage the spread of news until I know more. I am cautious about putting out partial information too soon because people, although well meaning, can be total morons and incredibly insensitive without meaning to be.

I have been pretty pragmatic about all this and have been in a "good" mood, all things considered, although with bursts of inappropriate humor and swearing. Early this morning, before dawn, however, I had a minor freakout and the first tears and some fretting and worrying. I expect that'll happen more. Fortunately, a call to my patient navigator at my breast health center helped to calm the waters. My best friend sent me a link to the group Chic singing "Freak Out" which did a lot to boost the mood. Humor and music can be magic.

I guess I just wanted to feel part of a community of supportive women who all understand what we're going through because I sure don't know what the hell to expect and it's reassuring to know that you are all there to provide wisdom. I hope to be able to do the same, when I know anything that is.


Comments

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited April 2018

    Welcome to the club nobody wants to join! I felt as you do about telling people. I was selective about who I told. Boss? Yes. Siblings? Yes. Facebook? No. I decided early on that I didnt want to be the subject of gossip and random memes. My Sunday School class was amazing--they brought food to us for 5 months as I went through multiple surgeries and chemo.

    Interestingly, my siblings and my mother totally dropped the ball. They all live at least a day's drive away, so I never expected them to drop everything to take care of me. But their reactions were incomprehensible. My brother called me several times, literally crying about how I couldn't die, he needs his sister. I finally had to stop taking his calls. My three sisters just dropped off the face of the earth, except for occasional text messages. And my mother...God love her...her response was to tell me all the stories of her friends who had breast cancer. Every story ended with "and she DIED!" Yeah, thanks, mom. Had to stop talking to her for a while, too.

    Serious illness will show you who your real supports are. I love my mother and my siblings, but they sucked at cancer support. So, I didn't lean on them.We still have close relationships, but we don't talk about cancer. I come here to talk about the cancer experience.

    Try out some of the boards. I'm on the fast moving Lumpectomy board. It's a great group of ladies. Come on over and check us out

  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2018

    Patsy, I had a similar hormone reading mine was er 95% and pr basically 0, I was her2 equivocal so they called it her2-. I had one idc and one ilc, grade 2 and grade 1. I did the oncodx test and scored a 34. They recommended chemo but I said no. I did 4 years on aromatese inhibitors. I am 7 years with no recurrence. I feel good only some lingering pain occasionally. I had a umx and DIEP reconstruction so I feel for the most part back to normal.


    Good luck to you, stay in touch.

  • Kanga_Roo
    Kanga_Roo Member Posts: 333
    edited April 2018

    Hi Patsy,

    Welcome, and sorry you have found your way to this community. I was diagnosed late Jan this year and went through similar feelings to you. I put off telling anyone until I knew more about my diagnosis. When I decided it was time to tell my adult children, I wrote them a letter and attached a photo of my results so they could google it if they wanted and sent it all as a text so they got it at the same time. I did that on a Friday night so they had the weekend to get over the shock. We caught up over the weekend and were able to talk about it without too many tears.

    Hope everything goes smoothly, and you know there are so many knowledgeable people on this site to chat to or compare notes.

    Sending a BIG hug

    Roo

  • Egads007
    Egads007 Member Posts: 1,603
    edited April 2018

    Hi Patsy, and welcome. Yeah, the whole diagnosis thing, the emotional rollercoaster ride, the freak outs and then moments of calm....it all stinks! Especially in the beginning. All the comfort I can offer for it is to say you’re not alone, and with time we learn to deal with it and wrap our heads around it slowly. The next few months are going to be rough on you so be sure to be kind to yourself, often. Take advantage of the boards with questions or just reach out for support, we’ve got your back! I can tell you that I’m 4.5 years out and still am pretty closed mouthed about my health. None of my neighbors know (I moved after treatment), and only family know. I find that im treated differently once people know, they’re kinder, I see it as pity. I don’t want to be defined by it so I refuse to walk around with a capital ‘C’ over my head. That’s the great thing about this community, I’m just just accepted as me....warts and all. I loved your music and humour comment...I live by that mantra! When you’re boosting your mood with music, don’t forget to dance...cancer can’t steal your spirit if you don’t let it! Peace & hugs!

  • PatsyKB
    PatsyKB Member Posts: 272
    edited April 2018

    Oh thank you, all...I feel like I've found a second home here. Such supportive messages are hugely comforting when I'm on the threshold of plunging into something I never asked to be part of. I am reassured - and cautioned - and I know that I/we will get through. It's just the whole "what's next" thing that haunts. That and the fact that I tend to go into things like this with my antennae up for friends armed with overly-solicitous caring or unsolicited-advice or the inevitable "Well, listen to MY cancer story..." or offers of out-there-alternative-therapies-or-woo-woo (I live in that kind of community and I am a realist a skeptic). So I have to guard against being, well, guarded.

    I decided today that if there was an up side to this - HAH - it was that it might have finally given me something I can write about on the blog I started ages ago but pooped out on immediately. So...that might be something to celebrate a little.

    Right now I am feeling ready to learn. And then, ready for anything. Until the surgeon meet the week after next however, we have a trip planned to a national park for a hike and we're going to do it. A little outdoor, red rocks and "mental floss."

    Egads007, Kanga Roo, Meow 13, and mustlovepoodles - big smooches to you.

  • MO-Beth
    MO-Beth Member Posts: 84
    edited April 2018

    Patsy,

    LOL at your caption about the unicorns. That's exactly how I felt! You're going to fit right in around here!

    Yes, go on your hike. Don't put anything off right now because of your diagnosis.

    This isn't going to be as bad as you're imagining...trust me. I was really scared of what I thought was going to be such a life-changing event. I am self-employed and was lucky to not have to do chemo. If you have to do chemo, it's, I'm sure, much harder, I don't know. But I just had to do radiation, so I scheduled my work around my radiation appointments and I drove myself to all of the radiation appointments, which were an hour away.

    You're strong...you're funny...I hate that you're here, but I can tell you're going to get through this just fine.


  • Ingerp
    Ingerp Member Posts: 2,624
    edited April 2018

    Patsy--yes BCO is an *amazing* resource. Re: freakouts, I found that they came at odd times, like when I heard I'd be a patient of my BS for five years, or the first time I realized I was entering the hospital through the Cancer Center door. Shed your tears but then buck up and get on with it. Re: sharing the information, this time around was particularly weird for me. I got the dx the day my husband was leaving the country for a week, so I decided not to tell him until he got back. I didn't feel like I could tell anyone before him, so I spent a long, lonely week watching the calendar. And both two years ago and this time I was a couple of weeks away from seeing two of my kids in person, so I waited until they could see me to share the news. I feel like it's all in how you present it--for me it's important not to scare anyone, so I'm very "no big deal, I'll be fine, just may not be a fun couple of weeks/months". I like your friend's song choice! I listened to Imagine Dragons' Radioactive quite a bit when I was in rads--always made me smile. And re: your upcoming trip, if it's in the area I imagine I'm a little jealous! For my 60th last fall I took myself to the American SW, where I had never been. Saw nine National (and two State) Parks in four days--it was jaw-droppingly beautiful. Go and enjoy!!

  • moth
    moth Member Posts: 4,800
    edited April 2018

    Hi Patsy, nice to meet you but sorry you're here.

    I love your sigline :)

    I too am ER+/PR- but in my case my ER is super weak & almost neg....

    I'll see you on the daily exercise thread too - I like to check in there as well. I think we have a lot in common. I'm vegan & also an evidence-based medicine person. I started a private password protected blog & only give the link to some people. It lets me keep people up to date without spamming their inboxes and I also like that it gives them the choice to opt out of reading. I figure everyone needs a break sometimes from hearing about cancer & this way they have to choose to go read.

    Know that it all gets better once you have a treatment plan in place. Many of us find the beginning part between dx and treatment the most frustrating. Once you're actually doing *something*, it all feels more manageable.

    best wishes!


  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited April 2018

    Patsy:

    Chiming in to say, as others have, that you're in the hardest phase of this right now. Once you have a firm treatment plan in place and more information about your diagnosis, it gets a little easier. Really.

    You've found the best place for support! I could not have made it through 2017 without these folks.

    Ask any and all questions.Someone will answer.

    {hugs}

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