Anxiously waiting to be scheduled

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girlgeneric
girlgeneric Member Posts: 4
edited August 2021 in Surgery - Before, During, and After

Hello all, I'm happy to have come across this site, everyone seems very kind :) I'm hoping some of you may be able to help keep me calm maybe while I wait to be scheduled for my double mastectomy.

I turned 40 this year, and have been considered high risk for the last several years. I have IDC, stage IIA at diagnosis (Aug 2), grades 2/3, ER+/PR+/HER2-. The mass is in my left breast around 6:00-6:30 and was 3.1 cm x 1.4 cm at biopsy (July 30). At the time they didn't see any lymph node involvement from the MRI I had on July 27. I first felt the lump on July 19, about a month after my last manual exam (where neither the NP nor myself felt anything). My last mammo was Dec 2020 (nothing noted there other than a past biopsy clip and cysts etc). So it feels like it came on super fast between June through closer to end of July?

I can feel that the mass has grown since the biopsy on Aug 2 too though, and that's what has me very worried. I know it's bigger, and I'm afraid of how large it will be before I can finally get surgery, if that means it will spread before then, reach lymph nodes, make me a higher stage, etc. I'm smaller (about 34B), and when I'm laying on my back, it's the most visible point on me :/ a little unnerving.

The breast surgeon did not seem too concerned though about timing when it was 3.1 cm on Aug 3, and encouraged me to look into reconstruction options this past week. We also talked about lumpectomy vs mastectomy and that's when I decided to go bilateral. It took a couple plastic surgeon appts between Aug 4-11 before I could get enough info todecide not pursue that route. So, I've really only waited about a week, but now that I've felt how much larger the lump is, I'm worried I've set myself back by not deciding more quickly. I don't think I could have though!

I see the NP Monday, as I had that scheduled as a check in a week or so ago for my own peace of mind. I also have a separate appt with the actual breast surgeon for Wednesday too, to go over some details and they said they would talk about scheduling then. But now I just want to get it scheduled ASAP :(

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited August 2021

    Your mass might feel bigger BECAUSE of the biopsy, it's normal to have some swelling. Your scheduling is very normal.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    I agree with alice. Additionally, the vast majority of breast cancers are slow growing so don’t feel that that this is taking too much time. I think you were wise to explore recon options and get the full picture before deciding which way to go. My surgery, bmx with one step implants, was about 8 weeks after my dx as we had to coordinate the schedules of both surgeons.

    You are already in the pipeline and although it feels like it, breast cancer is rarely an emergency. Waiting is never easy but it is doubtful that the wait will have any negative impact on your situation. Take care.

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2021

    Hi girlgeneric, and welcome to Breastcancer.org.

    We're so very sorry to hear of your diagnosis, but we're glad you've found us. As you can already see, our Community is full of amazing members always willing to offer advice, information, encouragement, and support -- we're all here for you!

    We echo the members above with the notion that while it can feel like a very urgent situation, the timing between diagnosis and surgery often is less than desirable, but normal. It'll give you time to do lots of research on what to expect and recovery tips. We're all here to help you prepare for surgery and beyond. There's lots of wonderful tips here and others always offering their experiences. This thread might be a good place for you to start:

    Shopping/packing/to-do list for surgery + recovery....

    Please let us know if there's anything else we can help with while you navigate the Community! We look forward to seeing you around the boards.

    --The Mods

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  • girlgeneric
    girlgeneric Member Posts: 4
    edited August 2021

    thank you Alice and exbrnxgrl! I'm hoping you're right and it's just from the biopsy still… it was feeling so much better last week, then painful again this week, along with being so much larger


    And thank youmods… I appreciate the link about surgery prep too, I used up all my brain power making the decision to not reconstruct, and now I need to focus on the next steps…

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  • K-Gobby
    K-Gobby Member Posts: 140
    edited August 2021

    Ggirlgeneric- I found my lump and the PA I went to in my new Doctors office did a breast exam and found it too, so she sent for a mammogram, and then i was sent for a ultrasound with a biopsy just cause the guy was available on this day too. The stars aligned. In that my 2-3 turned out to be a fiver. A few centimeters bigger. No nodes in the subsequent cat scan and bone scan found anything of note in bones, liver or other. Looks like i have the sacs that could cause trouble in my stomach or colon.(i forgot) They are not cause yet. So i sailed along and my FISH test came back, finally from the first Doctor and I was to do 4 infusions. One every 3 weeks. I too participated in genetic testing at the City of Hope for a study, no cost, and BAM! Two days ago i find out i have the BRCA2 gene. It loves breast, ovaries and to spread. If I had not done the genetic testing?????? I am now doing 12 infusions, once a week. I am getting my hair cut monday, because it has been at the middle of my back for years. I have cancer, I need to let it go. I have no doubt i will cry when it is cut off. To keep or donate?

    Follow the Doctors orders. If you do not feel right, ask questions. You are going to the surgeon and looking at options. Me too. We will make the right decisions when we are armed with the information that works for us. Report back for sure.

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  • girlgeneric
    girlgeneric Member Posts: 4
    edited August 2021

    thank you so much, K-Gobby, for sharing your story and for the encouragement. I am sorry to hear you have the BRCA2 gene! I also understand about your hair, I love mine (in all it's unwieldy glory) and would be sad too <3

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  • Janewhite
    Janewhite Member Posts: 70
    edited August 2021

    K-Gobby: I used to have hair well past my waist. After my diagnosis I donated it all to Wigs for Kids and I now have very short hair. (I'm unlikely to need chemo, but that mane wouldn't survive taximofen!) I felt very good about the donation, and now that I'm recovering from surgery, I'm so glad I don't need to care for my hair. And if my hair thins, it thins.

    GirlGeneric: There is so much waiting for phone calls, and it can be super stressful. But a few days ultimately aren't going to make a big difference.

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  • girlgeneric
    girlgeneric Member Posts: 4
    edited August 2021

    thank you Jane - hope you’re recovering well

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