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Just diagnosed... what should be the order of my treatment protocol?

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boomergypsy
boomergypsy Member Posts: 4

Hi there… I was just diagnosed with DCIS, left breast. I'm not sure what my 1st, 2nd, 3rd, etc steps are - or should be - from here. Here are the medical notes from my diagnosis:

Left breast calcifications:- Grade 3 ductal carcinoma in situ, solid type with comedonecrosis. - Numerous microcalcifications are identified. - Negative for definite invasion. - Quantitative ER and PR will be reported in an addendum.

Do I see a breast surgeon first? Or, do I see a surgical oncologist first?

Thanks for any helpful feedback. Feeling stunned, confused, and of course scared.

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  • rnjen
    rnjen Member Posts: 16
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    Hello, very sorry to hear about your diagnosis. My cancer was not DCIS but this was my experience. I was diagnosed with IDC and the first step was to see a General Surgeon for recommendations on how to proceed and was given my surgical options. Next I saw the plastic surgeon for all of my plastic surgery options that they recommend. I had a double mastectomy with the General Surgeon and Plastic Surgeon working together. I saw the oncologist after surgery when I received my final surgical pathology which can change sometimes after the cancer is removed. I also did extensive genetic testing first before making a final plan due to my "youngish" age of 44. I know this is an extremely stressful time when you don't have all of the information yet or a plan of action. It is scary but it will become better when you have a plan and a team of people working with you. Wishing you all the best.

  • maggie15
    maggie15 Member Posts: 989
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    Hi @boomergypsy , I'm sorry you have to join us here. I was initially diagnosed with DCIS and referred to a breast surgeon. They will recommend any other doctors who might need to be involved (such as a radiation oncologist or medical oncologist) depending on your unique circumstances. I travelled to a breast cancer center where all specialties were on staff. I was glad I did since my small rural hospital had missed the IDC on my biopsy slides and I needed more extensive treatment.

    Sometimes surgery (I had a lumpectomy with a good cosmetic result) is all you need but the exact course of treatment depends on your surgical pathology report. As rnjen said, once you have a plan in place things get easier. All the best going forward!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,933
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    In addition to the experiences that a few members provided, have you called your doctors office and asked about this? They would definitely be a good source of info for you. Take care

  • pinkrules
    pinkrules Member Posts: 97
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    I'm glad you found this helpful forum! Your primary doctor or gynecologist should help you with the next step. Here were mine: My primary doctor referred me to a breast cancer surgeon (in the same medical facility as him but about 20 minutes away) who then, after looking at my images, ordered a MRI needle biopsy to "see what's going on in there". She then decided I should get a lumpectomy. All cancer was removed and no further surgery needed. She then referred me to the radiologist. After an accelerated five day radiation treatment, the same breast surgeon referred me to the oncologist. The oncologist then becomes your main cancer doctor who may put you on hormonal treatment. So here were my steps:

    Get a referral from your primary doctor or gynecologist

    See a breast surgeon with your recent tests results and imaging (she might even decide you don't even need surgery just yet).

    Then a radiologist

    Then the oncologist.

    I want to add...all of the above, the biopsy, the lumpectomy, the radiation were all painless for me. Concentrate on one step at a time so you don't become overwhelmed. I wish you the best, it sounds like they caught your cancer early!

  • boomergypsy
    boomergypsy Member Posts: 4
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    Thank you all so much! I feel so much better and well equipped with all your knowledge and experience. 🩷🩷🩷

  • boomergypsy
    boomergypsy Member Posts: 4
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    Hello all… thanks again for all the info and experience sharing! I have an appt with a surgeon on 1/23, so I'll know and understand even more after that. Wish me well!!

    Thanks!

    💕💕💕💕💕

  • maggie15
    maggie15 Member Posts: 989
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    It’s good that you have an upcoming surgical appointment so that you can get started on your plan and treatment. I hope it all goes well!

  • moderators
    moderators Posts: 8,173
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    @boomergypsy We're just checking in on you to see how your treatment is going, as we haven't seen you in a little while. How are things? We're here to support you!

    —The Mods

  • boomergypsy
    boomergypsy Member Posts: 4
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    Latest update: I have a lumpectomy of my left breast scheduled for 3/4. It's outpatient and would love to hear from anyone who's already been down that road about how your recovery period went. Pain levels and management? How long you were sore? Return to normal/physical activity? Also, seems like they will recommend a 5 year plan of estrogen blockers…. ugh… not looking forward to a 2nd tour of duty with menopause. Thoughts? Advice?

  • moderators
    moderators Posts: 8,173
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    @boomergypsy Our Lumpectomy Lounge thread is a great resource for more info on your surgery!

  • salamandra
    salamandra Member Posts: 745
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    Hello,

    At this point, I have had two out patient lumpectomies, one on each side.

    I'd say the pain was totally manageable with otc meds, but the fatigue was longer and harder than I'd expected.

    In both cases, the recovery from the sentinel node biopsy was harder than from the breast surgery and since you have DCIS, hopefully that won't apply to you. But if your doctor's office does recommend any kind of exercises, well, I'll just say I wish I'd done them more faithfully the first time around.

    I'm not a big exerciser but I was able to get back to my regular walking right away. I don't know about more intense regimens. My job is fairly active (teaching) and I took a week off both times, and was glad for it.

    Good luck!

  • lb13
    lb13 Member Posts: 48
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    Hi there -

    I had a lumpectomy for IDC in 2020 and will be having another lumpectomy (same breast) for DCIS next Thursday - very similar DCIS diagnosis to yours. Mine is also calcifications approx 1 inch in size. If you have not had a breast MRI, might want to ask for that prior to your surgery to make sure nothing else is 'lurking' in there. I will say I also recovered well from first lumpectomy. Didn't take more than that day off of work. This time, I am taking two days and will have the weekend to recover a bit more. I will also work from home the following week as I definitely did not give myself enough time to rest/mentally process things the first time, but I was very new to my job and paranoid! :) Wishing you the very best and a successful surgery/recovery.