Young and just diagnosed

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Anonymous
Anonymous Member Posts: 1,376
edited October 2017 in Just Diagnosed
Young and just diagnosed

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  • puppiesnalpacas
    puppiesnalpacas Member Posts: 13
    edited October 2017

    Knew something must have been up when I received a ton of missed calls last night, but was still hoping.

    Anyway, it's official. I'm 29 and just got dx with IDC, Grade III. So much for thinking about starting a family.

    Today has been insane. Roller coaster of emotions. Still trying to figure out what to do. So many questions but no mindset to focus.

    Got an MRI coming up and an appointment with Surgeon next Thursday.

    How did you guys get through day 1 of diagnosis? My work schedule got cleared for the week, but I don't know what to even do with myself.

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2017

    puppies,

    We are so sorry to hear of your diagnosis. We know it's an overwhelming time and you're going through a lot -- but you're doing exactly what you should be doing right now -- coming here, looking for support and advice. You're sure to find many others here who will welcome you in and help you get the information you need.

    You may want to stop in on the IDC forum to introduce yourself, as well as the Young With Breast Cancer forum -- lots of members there who know what you're going through.

    We look forward to hearing more from you and supporting you all the way!

    (((Big Hugs)))

    --The Mods

  • Mama1416
    Mama1416 Member Posts: 26
    edited October 2017

    Hi, I'm so sorry you have to deal with this at such a young age. The first few weeks are very scary and emotional. I promise you, it will get easier as you get more information and a game plan.

    Don't jump to the conclusion that you won't be able to have children. There are lots of women who have children after breast cancer.

    Take a deep breath......you are not alone

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited October 2017

    Hi puppiesnalpacas,

    I'm so sorry to hear that you've joined the club no one wants to be a member of...

    First of all, don't give up your plans to start a family. One of the referrals you may need is to a fertility expert. You'll want to mention that you want to start a family to each of your docs, so that when treatments are discussed, any impact on your fertility will get discussed. Some of the treatments might impair future fertility, so you might want to "preserve fertility" before those appointments--which is why you want to have a fertility expert on your medical team.

    What did I do on "day 1"? I think I mostly stared at the wall. Then I started doing research. Which is what you're doing here. So, a couple of additional things:

    1. Do you have a copy of your pathology report? The actual report from the pathologist, not just some patient letter. If not, get a copy. That is probably a lot of what will get discussed at your appointment with the surgeon. My surgeon game me a copy of the BC.org pamphlet about pathology reports. And my Mom's surgeon did the same. But you might want to take a look now, and read through it. It will give you information you may want to ask questions about. You can print one out from "here."

    2. That "no mindset to focus?" Almost everybody has that response to a BC diagnosis. And that makes it very, very difficult to take in what they tell you at the initial consultations with your various docs. It's just very hard to hear them talking about "your cancer." So you may want to think about taking someone with you to that appointment, as a second set of ears. You might also want to record the consultation. Ask your doc's office, but most will allow that so that you can "listen again later."

    3. You need to plan how you'll handle the mountain of paperwork you're going to get. Appointments, bills, insurance EOBs, payments, research, questions, test results & reports. You essentially want to keep your own medical record, so request copies of office visit reports, blood test results, procedure reports, imaging reports (as well as a disc with a copy of any imaging studies). A notebook, file folders or whatever. You'll be surprised how often you get to an appointment where another doc's office should have forwarded something and you discover they don't have it. It doesn't matter if it wasn't sent, was misfiled or whatever. If you've got it with you (in the travelling portion of your personal medical file w/ the latest things that you bring with you to appointments), they can make a copy on the spot. And not have to redo tests or reschedule appointments.

    4. Depending on your particular BC, you may well discover that chemo before surgery is the newest approach. Doing that lets you use your lump to discover if the chemo they've prescribed is the best one for your BC, based on the effect on the lump. It might substantially reduce the size of the lump, allowing you to have a smaller surgery. Having a consultation with a medical oncologist before is the best way to discover if you might benefit from that approach.

    5. Consider getting Dr. Susan Love's latest edition of "The Breast Book." There's lots of information there which can give you information which will allow you to ask questions of your medical team.

    6. If you aren't happy with the docs or the treatment they are suggesting, you can always get a second opinion. On anything. Pathology, imaging, MO, SO, RO, plastic surgery...everything. It never hurts to get a second opinion to bolster your confidence about what to do next (hopefully at a NCIC designated cancer center or university-affiliated cancer center). If you like what the second opinion doc says/suggests you can follow their advice with your initial medical team, or even change docs.

    7. Finally, try to relax and deal with this step-by-step. Every breast cancer is different. So what you can do now is all you can do now. Make the decisions that face you now. Don't worry about what you might have done/could have done in the past. Make lists of questions you have or worries you have. Ask your medical team. Ask here!

    HTH,

    LisaAlissa

  • Mucki1991
    Mucki1991 Member Posts: 294
    edited October 2017

    I second what's already been posted for me I worked but it was hard for me to stay focused but it did help. Consider this as far as work depending on how hard or easy your treatment is you may or may not be able to work so try to factor that in as your processing. It's a lot but you can get through this use the wisdom of these wonderful ladies. Best wishes honey

  • puppiesnalpacas
    puppiesnalpacas Member Posts: 13
    edited October 2017

    Thank you for the warm support, and the helpful advice!

    Now that I've had two more days, I am finding myself better able to think and to actually do research.

    One issue I am realizing is that my health insurance (of course I bought the cheapest) only covers my care at the community hospital, so I will need to call them and my PCP tomorrow in regards to potential costs and potential authorizations for outside referrals. Ideally, I'd like to get the opinion of a NCI designed cancer center, as you mentioned above.

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