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Renee9487
Renee9487 Member Posts: 6
edited February 2019 in Diagnosed and Waiting for Test Results

Hi, I am dealing with this diagnosis in a rather apprehensive manner. It is the not knowing that is the worst, I think. I had a lumpectomy on Jan 29 and will start radiation in early March, but am waiting the Oncotype DX results before deciding on chemo.

My grandma had breast cancer, and several physicians have told me that her cancer was unlikely to affect my chances of getting cancer. But here I am, with a dx code that says that I have a family history. I have a family history of heart disease also, and would be emotionally more prepared for heart disease than cancer...but the heart is doing great. Getting cancer has always been one of my deepest fears.

Since I am a scientist with a background in medical research, I find that looking up the scientific details of the cancer is helpful for maintaining my perspective. I'll find out all I can about the specifics of the testing, but I think I need some human perspective also. So I am posting here, since I am still undecided whether I want to attend any support group meetings. 

Anyway, hi everyone.

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2019

    Renee, welcome to our warm and caring Community! Sorry you have to be here, but we know you'll find great support to talk and vent, and helpful information to help you make the best decisions along with your medical team.

    Please, let us Mods know if there's something we can do for you. We're looking forward to hearing more from you soon!

    Best,

    The Mods

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited February 2019
    Renee, you are at what can be the worst point in your diagnosis, waiting to know what you are up against. Once you get your Oncotype, you can move forward with a plan. I, too, had drs. that didn't acknowledge my family history, which is very infuriating in hindsight. Have you received any pathology from your lumpectomy that you can share?
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  • Renee9487
    Renee9487 Member Posts: 6
    edited February 2019

    Hi Peregrinelady,

    Thank you for the welcome. I have stage 1A invasive lobular carcinoma, based on the biopsy results. But the lumpectomy path report said it is grade 2, not grade 1, so I am not sure of the exact stage now. ER+, 90-100%. PR+, 15-20%. Her2(-). Size of tumor, 1.2 cm, right breast.  I have an appointment with the medical and radiation oncologists on Mar 1, so am still waiting on details of the treatment and the Oncotype result. I only know right now that I will get radiation (but for how long?) and some sort of hormone therapy. Since I am a scientist, the path report told me a lot of info (that the pathologist did not specify) about the characteristics of the carcinoma cells which is interesting but not especially useful.

    The timing for this is especially bad (as if timing is ever good) because in November, I also was diagnosed with a torn rotator cuff, right shoulder, which will almost certainly require surgery. But now I will have to put off any treatment for that until after I finish with the cancer treatments and reconstruction. Which means that I am in constant pain for a reason unrelated to the cancer. 

    Nice to meet you!

    Renee 

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  • Runrcrb
    Runrcrb Member Posts: 577
    edited February 2019

    Rene, you asked for a human perspective so I will respond with mine. Diagnosis period was the hardest emotionally. I didn’t get active on this board until after completing my treatment-mostly because I didn’t understand how to use it. And that was fine as I look less to strangers for support than many people do. I tried a couple of local support groups but didn’t find a good fit. I was able to get the support and information i needed from family, friends and my medical team. I was even able to find a friend of a friend who pursued the same reconstruction i did.

    Sorry to read of your torn rotator cuff. I found that non-cancer things going on my life made a difference. For example the only time i cried in two years of my cancer and my husband’s cancer was the morning after I broke my elbow and couldn’t zip my own pants! I broke my elbow one week after my last radiation ☹️

    Good l

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2019

    renee...while you are waiting, if you haven't done so already...register at the NCCN's website and read the physicians verson of the breast cancer treatment guidelines. Make special note of the footnotes. They tell a lot about studies...


    I had surgeries on both of my shoulders. I feel your pain. I also had elbow and finger surgeries too! Life is messy.....


    I wish you well

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  • TB90
    TB90 Member Posts: 992
    edited February 2019

    Renee, this is definitely a club no one wants to join, but from my human perspective, it is the best source of accurate info and personal support that I have received. So welcome anyhow. Just FYI, Stage and Grade are unrelated. The fact that your cancer is grade 2 will not affect your stage. Stage refers to how advanced the cancer appears to be and grade refers to aggressiveness. But these numbers can be changed with final pathology results, additional testing yet. But it appears to be very early and only moderately aggressive.

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  • Ingerp
    Ingerp Member Posts: 2,624
    edited February 2019

    Just chiming in on the radiation. It'll likely be 20 sessions (the "Canadian protocol") or 33, with one every weekday. They both deliver the same total amount of radiation (the shorter duration is at a higher dose). The first 3/4 are whole-breast, and the remainder are boosts delivered just to the tumor bed. I had 20 sessions in 2016 but 33 last year because the chemo makes the skin a bit more sensitive to damage. The hormone therapy is typically Tamoxifen for pre-menopausal women and an aromatase inhibitor if you're post-menopausal. It's a daily pill that you'll take for at least five years (some doctors are now suggesting seven or 10 years based on recent research). So sorry about the shoulder--ouch!!

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited February 2019

    When you go for your radiation set-up somewhere down the line, make sure they know about your shoulder issues. The positioning can be brutal on shoulders, but they might be able to work around it if they're aware. Also, the set-up will determine how many sessions; the scans they do will give the radiologist the information needed for that.

    I had enough close relatives with cancer, and I've had enough cancers myself, that I was scheduled for a session with a genetic counselor and got tested. Nothing. No BRCA, no Lynch. And nothing in my pathology conveyed any genetic hints, either. Sometimes it's just crap happening.

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited February 2019

    The not knowing is definitely the worst.

    My mother and her mother both had breast cancer, but I tested negative for known mutations and the doctors said there wasn't much that would be done differently. I *ought* to have gone for a mammogram at 35, but ¯\_(ツ)_/¯.

    The only thing they're doing is trying to get me rotating MRIs and mammograms, if the insurance will pay for it.

    My lay-reading of the new staging guidelines makes it seem like you're IA. The only way to get into IB would be with grade 3 if they weren't counting you as PR+ or grade 2 but triple negative.


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  • Renee9487
    Renee9487 Member Posts: 6
    edited February 2019

    Hi Runrcrb,

    Ouch, I can certainly sympathize with you breaking your elbow. I broke mine, too, 12 years ago, and still feel pain from it. I haven't told many people about the cancer--my husband and son and my supervisor. Your experience with support groups is interesting, and I will certainly consider that as I decide whether I want to go that route. The cancer center where I am being treated also has a mentorship program, but I can't see myself doing that at all.

    Thank you for the welcome!

    Renee

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  • Renee9487
    Renee9487 Member Posts: 6
    edited February 2019

    Hi voraciousreader,

    Thanks for the tip, I will check out that website. I definitely am looking for more information, especially the super nerdy type of info.

    I sympathize about the surgeries. Whenever I go to the doctor and they ask about past surgeries, it always is an effort to remember them all!

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited February 2019

    Renee

    I don't get here often anymore- but your post caught my eye because of the similarity of your dx to mine--- I too considered support groups, but honeslty, I found the people here much more helpful (and available 24/7!) so I never joined a group-plus, after my lumpectomy, chemo and radiation, as far as I was concerned, I was done with cancer..... wanted to move on... so you may find that this group meets you needs-but if you need an in person group, I am sure your dr. office has many recommendations.

    The waiting is the worst-- truly the hardest time--- but once you have your score you can get started making a plan. My recollection about radiation was that it was 33 days-I went every morning on the way to work-- quick visits as I recall....


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