Topic: My first day as a cancer patient

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Oct 27, 2022 11:18AM

Posted on: Oct 27, 2022 11:18AM

scifelli68 wrote:

Hi all,

I have been on a 3 month process which resulted in my test results coming back today as the following:

invasive ductal carcinoma grade 2

Ductal carcinoma in situ grade 3 with comedonecrosis , calcifications and extension into lobules.

help!!! I saw the results in MyChart this morning at around 9am and still have not received a call from my doctor (2:20pm)

Has anyone gone through a similar diagnosis? Have any advice or words of wisdom? I’m 54 years old with a family history of BC as a introduction. Any information would be appreciated.

Thank you!

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Oct 27, 2022 11:32AM lw422 wrote:

Hello and welcome; my sympathies on your reason for joining us. I know this is a terrifying time; it's always awful during the first whirlwind weeks of testing, diagnosis, and treatment. My very best wishes for the best possible outcome. Be kind to yourself.

Dx IBC, ER-/PR+, HER2-
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Oct 27, 2022 12:02PM - edited Oct 27, 2022 12:03PM by wondering44

Hi scifelli68,

I am sorry to see you got the diagnosis. I was diagnosed with IDC and extensive DCIS.

First, breathe. The dx is a rollercoaster ride, and it sux!. However, you will get through it. Try to stay off of Dr. Google. There isn't much friendly out there in that world, and it will only have your mind going to the gutter of worst-case scenarios.

One - Call your facility. It is okay to contact your doctor who ordered the biopsy for results. Let the person who answers the phone know you want to discuss the results with the doctor ASAP because you are freaking out. You should get a referral to a breast surgeon ASAP to get the ball rolling. Once you get a treatment plan in place, it does get easier, and I know it doesn't feel like that today.

Two - Get a strong support team (friends, family, therapist) to listen to your fears, unknowns, and cries. It will make a BIG difference. You may get unwanted advice. Just say thanks and let it roll in one ear and out of the other. Your best advice will come from others who have been in your shoes and your Cancer Team.

Three - You will have many upcoming appointments and treatment decisions, but you don't have to rush to make treatment decisions. I started with a nipple-sparing mastectomy on one breast and had a bilateral mastectomy a year later. It all worked out even though the year of treatments and options was tough.

Four - Cancer is not an emergency in healthcare, and you will have more waiting. That is the hardest part of it all.

Five - You will get through it. Ask as many questions as you want on these boards. There are a lot of women here who have ridden the rollercoaster with great advice and LOTS of knowledge.

I wish you the best and send hugs your way.

I didn't get a choice in getting cancer. I do get to choose how I live each day after. Surgery 8/18/2021 Lymph node removal (Right): Sentinel; Mastectomy (Right): Nipple Sparing Surgery 8/31/2022 Mastectomy (Left): Skin Sparing; Mastectomy (Right): Skin Sparing Dx DCIS, Right, 1cm, Stage 0, Grade 2, ER+/PR+, HER2- Dx DCIS, Right, 6cm+, Stage 0, Grade 3, ER+/PR+, HER2- Dx IDC, Right, 2cm, Grade 2, ER+/PR+, HER2- Dx IDC, Right, 6cm+, Grade 3, ER+/PR+, HER2-
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Oct 27, 2022 03:05PM quietgirl wrote:

just to put something in perspective because a ruling in the USA that requires information to be released to the patient, doctors that use my chart have fallen into a bit of a problem zone information maybe released to you at exactly the same time as it’s released to the doctor. You are going one persons info say the Dr is a getting a conservative 5 now if they have nothing but a paperwork day ahead of them they might be able to go through those 5 charts gather the info make some calls and start you on your way BUT what if they start their day with 3 appointments they really 6 charts to review and another 2 patients to follow up on. 11 patients in 8 hours may or may not be doable it’s going to depend. My point is just because you don’t hear within 3 or 4 hours a document hitting mychart doesn’t mean you situation isn’t important to that doctor nor does it mean they aren’t doing something to work on your info. If the doctor gave you a time frame (like I’ll call you by 6 on Thursday then obviously calling at 5:50 on Thursday makes sense 🤔. ) but if they said I will talk to you on Monday then you have to make a decision based on your piece of mind. Call on Friday wait till Monday whatever works for peace of mind. If you haven’t heard yet but always remember mychart is a blessing and a curse and chances are you will see things before the doctor wait for results if you hit view right away. Also they will know that you viewed the mychart. Which isn’t a bad thing. The doctor who did my biopsy called and said so I see you’ve seen the results and the conversation went from there.

Surgery 2/7/2022 Lumpectomy (Right) Radiation Therapy 3/9/2022 Whole breast, Radiation boost: Right breast Hormonal Therapy 4/18/2022 Arimidex (anastrozole) Dx DCIS, Right, 3cm, Stage 0, Grade 2, ER+/PR+
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Oct 27, 2022 03:19PM scifelli68 wrote:

thank you ladies! I did hear from my Dr. I fully understand the good and bad points of MyChart so I knew I would see the results before my Dr called me. She did apologize for that but I was not upset with my Dr in any way. It was my choice to look and I made that choice because I wanted to know. That aside, she did say it's very early stage. Very treatable and very curable. I still need the rest of my results from pathology before we know exactly what we are dealing with. I'm actually pretty calm about it. Now that I know I feel like I can start moving forward instead of being in limbo like the last 3 months.

is it crazy to say I want a bi-lateral mastectomy? I feel like I am putting the horse before the cart but I just feel so sure about it and I don't know why ..maybe because I have no clue what comes next? Sooo. What comes next? Lo

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Oct 27, 2022 04:11PM quietgirl wrote:

it’s okay to want that and it’s okay to decide it’s not what you want after getting more info or even be more sure of it. Your doctor should be able to help you shift thru your choices but as with any major decide weigh your options and then decide. It’s your body and your life and you are the one who is going to be living with it. So allow yourself to gather the info even when you want to be in the hurry up get this out of me

Surgery 2/7/2022 Lumpectomy (Right) Radiation Therapy 3/9/2022 Whole breast, Radiation boost: Right breast Hormonal Therapy 4/18/2022 Arimidex (anastrozole) Dx DCIS, Right, 3cm, Stage 0, Grade 2, ER+/PR+
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Nov 3, 2022 07:35PM msphil wrote:

hello sweetie sorry your here but we can identify with you. I too was diagnosed with idc at 42 yrs old now family history of breast cancer.. We were planning our 2nd marriages when I found the.lump in right breast had soreness under left arm before that's. Had my cry asking why me then with fiance family friends helped me thru.My faith also. Praise God for getting me thru it All a long with my oncology team. Now this year a 28 yr Survivor come back here to Inspire others. You can do this. msphil idc stage 2 0/3 nodes 3mo before and after L mast got married then 7 wks roads and 5 yrs on tamoxifen. Also our 28th Wedding Anniversary. Positive thoughts lots of Hope.

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Nov 6, 2022 05:50PM momgoose wrote:

I am in a very similar situation. I got my biopsy results 10/18 and also have IDC, although stage 1. I am waiting for the surgeons to coordinate their schedules, but I am opting for a bilateral mastectomy with reconstruction as well. I just have had a gut feeling that this is the right long-term move for me. Maybe we can walk through this together and help each other. I'm sorry you're having to deal with this diagnosis as well.

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Nov 16, 2022 04:11PM msphil wrote:

hello sweetie I was diagnosed with breast cancer without family history. We were making 2nd wedding plans when I found the lump in shower. Was diagnosed after 2nd opinion with IDC stage 0/3 nodes 3 mo chemo before and after L mast then we got married then 7 wks rads. Had reconstruction but after 1 filling of expanded it hardened and was taken out and war prosthesis gladly. 5 yrs on tamoxifen. Had cytoxin 5 Fu and adriamycin..Praise God am now a 28yr Survivor and also 28yr Wedding Anniversary.

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Nov 18, 2022 05:19PM maggiehopley wrote:

Hi Scifelli68,

I also knew immediately that I wanted to have a bilateral. My first appointment was with the surgeon and he supported that decision fully. Then my tumor biology came back Her2 positive so I was transferred to oncology for chemo prior to surgery. I ended up having 4 months to think about my decision and concluded that my instincts were right. I had a bilateral without reconstruction in September. My ob-gyn retired in October so when I met my new one a couple of weeks ago, he said "you were so smart to get both done." It is not the right decision for everyone, so do think about it, but if you know that it's right for you don't be afraid to do it. I still have 8 more months of target therapy (infusions similar to chemo but with fewer side effects) and I could not imagine having to do this again down the road with another breast.

Chemotherapy 5/25/2022 Taxol (paclitaxel) Targeted Therapy 5/25/2022 Kanjinti Targeted Therapy 5/25/2022 Perjeta (pertuzumab) Surgery 9/16/2022 Mastectomy (Left): Simple; Mastectomy (Right): Simple Targeted Therapy 10/1/2022 Kadcyla (T-DM1, ado-trastuzumab) Hormonal Therapy 10/1/2022 Arimidex (anastrozole) Dx IDC: Mucinous, Left, 2cm, Stage IIA, Grade 1, ER+/PR+, HER2+, IHC Dx IDC, Left, 1cm, Stage IIA, Grade 1, ER+/PR-, HER2+, IHC
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Nov 18, 2022 10:41PM alexander21 wrote:

Hello, I feel very sympathetic about your current situation and are going through a terrifying time. I remember when my grandmother was newly diagnosed with breast cancer last year, and it shook the whole family dynamic immediately. The doctors and researchers in their field will try 110% to make sure they reach their mission for treating your cancer.

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