The waiting is awful!!!

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Anonymous
Anonymous Member Posts: 1,376
edited April 2018 in IDC (Invasive Ductal Carcinoma)
The waiting is awful!!!
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  • Kanona7795
    Kanona7795 Member Posts: 54
    edited March 2018

    I have been trolling this site for over a month now, but have been too scared to comment or share.

    I was diagnosed with IDC on Jan 25, 2018. It was my very first mammogram and I didn't want to do it. I thought to myself I'm still to young for a mammogram so I rescheduled it 3 times. After meeting with the BS in our town we decided to get a second opinion. I was just so scared and wanted to go somewhere where they deal with this every day all day long. On Feb 15 we finally were able to get into UAB which is a research & cancer center. I liked having a team of doctors that looked over my case and then all came in to give me their best form of treatment. I was told I was a good candidate for a clinical trial and if I didn't go that route then I would do standard chemo first before surgery. But in the mean time I would need a MRI guided biopsy so that was done on Feb 28. I have decided to join the clinical trial which wasn't really my first choice but I love the team of doctors and that is what they are pushing. So now I have to wait again for more test and after those test are done another 2wks for the Mammaprint to come back. My anxiety has gotten so bad I can't sleep or turn my mind off. Is this normal? Do people really have to wait this long to get a treatment plan together? Is it bad that I hope the mammaprint doesn't come back low so I can do chemo? I'm so scared that just taking Tamoxifen won't kill everything!! Sorry for the rant I just need to write this all down.

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  • operamom1
    operamom1 Member Posts: 40
    edited March 2018

    Waiting is terrible! I had a 4 week wait between my surgery and getting the results of my Oncotype test. I was worried about getting a low score because I wanted to make sure I hit my cancer with every available treatment. My score did come back low and I am frankly relieved now. I don't know what Mammaprint results look like, but with the Oncotype they show you your risk recurrence on Tamoxifen, and on Tamoxifen and Chemo. My results showed there would be no benefit with chemo in the treatment plan. Seeing the results on paper made me feel better about all of it. My oncologist was very good at putting my mind at ease about only being on Tamoxifen (after radiation). I asked a lot of questions in my last appointment. For example, what happens to those cells that are not hormone receptor positive? What happens if I don't tolerate Tamoxifen well? I wish my recurrence risk were 0, but that doesn't happen for anyone. We do what we can do and take care of ourselves and hope and pray for the best outcome -- that there is NED and it never comes back.

    I'm sorry you are in this limbo state. I hope your results come in and that your treatment plan is settled very soon!

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  • rgoossen
    rgoossen Member Posts: 34
    edited March 2018

    The waiting is the worst. I'm waiting on Onco Type DX testing to determine the course of my treatment.

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  • bella2013
    bella2013 Member Posts: 489
    edited March 2018

    Kanona775, you are doing everything within your power and control to face your possible cancer diagnosis. The waiting is the worst part of this journey. It’s very encouraging to hear that you have a breast cancer team. Yes, it is normal to be freaked out and scared. In this journey, it’s very important to understand your choices and to choose the path that you feel is right for you. Don’t feel pushed into a decision. This is your body and your health. You have one huge advantage already...you love and trust your team. That will help you immensely as you journey to being cancer free.

    This site provides a wealth of information, resources and support. Chime in often and share your concerns and victories with us.

    Blessings...

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  • Kanona7795
    Kanona7795 Member Posts: 54
    edited March 2018

    Thank you ladies!! Your words of encouragement is just what I needed to hear. As much as I hate being part of this club it is comforting to know I’m not alone on this journey.

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  • ksusan
    ksusan Member Posts: 4,505
    edited March 2018

    Welcome! The waiting is hard.

    You've been "lurking." "Trolling" means you'v been posting inflammatory comments deliberately to upset people.

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  • Kanona7795
    Kanona7795 Member Posts: 54
    edited March 2018

    Oh yes I mean lurking!!!


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  • Bec-Ky
    Bec-Ky Member Posts: 216
    edited March 2018

    I'm in the same boat! Diagnosed on my first mammogram ever.... And in January!

    I have many of your same fears... And am currently waiting for my onco score.. Which was screwed up and was forgotten to be sent out for 2 weeks post surgery. So I'm almost at the next 2 weeks waiting on results and want to get started on treatment while there's a possibility of a zillion microscopic left cancer cells... growing... (in my mind of course)

    Hate waiting!!!

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  • Kanona7795
    Kanona7795 Member Posts: 54
    edited March 2018

    Bec-Ky I pray you get your results soon and finally some peace of mind. Everyone keeps telling me that the waiting is the hardest part and man do I believe it. I finally did my last set of scans (Bone, CT, MRI, EKG, Eco) and my final biopsy for the mammprint. I’m doing Neoadjuvant treatment before surgery so hopefully that will start on the 28th. I’m just ready to start fighting this thing. Plus I love my family and friends but if one more person questions my decision about treatment I’m going to scream. I know they all mean well but I’m now on anxiety meds as well as depression meds to control my emotions. Does anyone else have a well meaning mother that tells everyone she sees your business?? I do and that just adds to the stress.

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  • Perez598
    Perez598 Member Posts: 2
    edited March 2018

    Just diagnosed today with IDC with a 3.7 cm tumor. I have an appointment next week with a surgeon who may or may not do surgery because he may refer me to oncologist to shrink tumor first. The tumor is in the left lower portion of my breast and I felt it so it is closer to the front I believe. They told me no staging could be done until tumor is removed so I don't even know what my prognosis is. I am freaking out and so scared and nobody in my family has had any cancer so they don't understand the waiting. I wish I had a plan and can move along towards recovery.

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  • Kanona7795
    Kanona7795 Member Posts: 54
    edited March 2018

    Perez598 I’m so sorry you are in this horrible spot. I know exactly how you feel and the waiting only seems to make it worse. The BS who diagnosed me wanted to cut first but my second opinion suggested Neoadjuvant chemo. It has taken 2 months to finally get thru all the test, scans, and come up with the right treatment plan. My family drove me nuts because they didn’t understand why it just wasn’t getting taken care of right away. You will make it pass the wait and worry part! I finally broke down and started taking anxiety meds which ha really helped. I also started my first round of chemo on March 28 and it feels so good to finally have started treatment.

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  • BlueSky1969
    BlueSky1969 Member Posts: 65
    edited April 2018

    I am losing my mind: Began Feb 28th in Vancouver BC w Mammogram, called back for another plus US, then skid's for Core on Mar 22, results last week, see surgeon Tues am. Haven't told my kids or many people. It's been gruelling...

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