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Topic: Overwhelmed and Underprepared

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

Posted on: Jun 13, 2019 01:56PM

eskfrussell wrote:

Hi all! I am 26, BRCA1 positive. On my 26th birthday, I found a lump in my right breast. It felt like it was skin level, but being BRCA positive, I got it checked anyway. Doctor sent me to get a diagnostic mammogram on both breasts and a diagnostic ultrasound on the right. After the mammogram, the doctor requested extra films of my left breast and wanted to the ultrasound on both. Turns out, I was right about the right breast being nothing, but they found a spot in the left that we biopsied later that afternoon. The results came back yesterday- invasive ductal carcinoma, stage 1, grade 3 with the spot being 1.2 cm across. We don't know yet if it is ER, PR, HER2 positive or negative (results should be in tomorrow or early next week). They called and got an appointment for me tomorrow morning with a surgeon and said I would be getting an oncology appointment through the surgeon's office. I am nervous waiting for these hormone receptor results because my aunt was diagnosed several years ago with triple negative cancer. On top of that, I have no clue what plan we'll be doing, or really what we'll even talk about at the surgeon's tomorrow without having those results. I'm a bit lost on it all. I had known that I had an increased chance of cancer because of the BRCA gene, but I never thought it would actually present this early. If anyone has any info on what to expect over the next few weeks while we narrow down what is going on, it would be appreciated. I'm freaking out and knowing what to expect helps. At this point, I've only had the mammogram, ultrasound, and biopsy on the lump. Thank you all in advance.

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Jun 13, 2019 02:19PM - edited Jun 13, 2019 02:20PM by ElaineTherese

Hi!

I'm sorry you find yourself here, and so young at that. It sounds like you're following the usual path -- appointment with the surgeon, appointment with an oncologist. Yes, discussing treatment options without knowing the hormonal or HER2 results yet does seem odd, but I think these appointments will be useful.

You do want to get a sense of how much confidence you have in your medical team. You might take the time to look into the backgrounds of your surgeon and oncologist (are they newbies? do they have a lot of experience, especially with BRCA patients?). Then, when you meet them, think about your comfort level. Are these doctors listening to you? Do they explain terms you don't understand? Are they willing to fully answer all your questions? If not, you might want to look into getting a second opinion or finding a new team.

I have been visiting an oncologist for almost five years, and I will be visiting her for years to come. I feel good about my current MO, and that's a good thing because she'll be part of my life for a long time.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Jun 13, 2019 02:42PM DATNY wrote:

Eskfrussel, my heart goes to you. It's going to be tough for the next months or so, but you've got it early. It looks like you have a pretty awesome guardian angel watching over you, given how it was discovered.

Depending on the molecular signature, the treatment could range from surgery, tamoxifen and rads to chemo, surgery, immunotherapy, and rads. Chemo sounds scarry, but for someone as young as yourself, it should be reasonable (side-effect wise). Before you know it, you'll put this behind you.

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Jun 13, 2019 02:46PM Moderators wrote:

Dear eskfrussell,

Welcome to the BCO community. We are very sorry for your diagnosis and also very glad that you chose to reach out to our members and share your story. We know that you can find great support and good information here. Here is a link to some initial questions that you may want to ask your doctor as you begin this process. We can certainly offer you more links and our members can offer you their experiences. Don't hesitate to reach out to us via private message if we can be of help with your navigation around the community.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jun 13, 2019 03:19PM vlnrph wrote:

How curious that a 'nothing' lump (found on your birthday!) would lead to discovery of a suspicious area in the other breast. It is fortunate that all your appointments are happening so quickly and efficiently.

You are probably thinking about your aunt's experience: was it her diagnosis that prompted the finding of your family's genetic mutation?

Since her treatment was some time ago, know that things are different now - and better in terms of handling side effects, new therapies, etc. You may want to look at the FORCE website. It was started by those with BRCA concerns and stands for Facing Our Risk of Cancer Empowered. There are also young survivor support groups.

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Jun 16, 2019 12:35AM eskfrussell wrote:

Update: I met with my surgeon today, and because of the BRCA gene, she is recommending a double mastectomy. I meet with the plastic surgeon on the 20th to go over reconstruction options, then the two will coordinate their schedules to get it done all at once. They will be doing an MRI sometime in the next week or two just to be sure it hasn’t spread and will be evaluating lymph nodes after the surgery, then I’ll meet with oncology to decide if I need chemo and radiation. Thank you all so much for the support. It’s been a rough week, but they aren’t moving very quickly with the whole thing, which has been amazing

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Jun 25, 2019 09:41AM nleerussell wrote:

eskfrussell how are you doing after your 20th appointment? I hope everything went well. Hugs

Dx 5/30/2019, DCIS, Left, 6cm+, Stage 0, Grade 2, ER+/PR+ Surgery 7/10/2019 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement
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Jun 25, 2019 01:28PM - edited Jun 25, 2019 01:30PM by eskfrussell

Thank you all for your well wishes, and I'm sorry about the delay in replying. It was a lot to process, and I only got the hormone receptor results (FINALLY) yesterday. Luckily, it is HR+, PR-, and HER2-, which they said will be very helpful with treatment. Since the 20th, I've met with the plastic surgeon, and I've had a breast MRI done. The cancer is only in that one spot as far as they can see, and they didn't pick up anything in the lymph nodes on the scan. Because of the BRCA gene, the surgeon has recommended a double mastectomy. I'm currently waiting to find out what day I'll be doing surgery. The surgeon will do the mastectomy, and the plastic surgeon will do the reconstruction in the same surgery (sometimes within the next 4 weeks)

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Jun 25, 2019 01:42PM ElaineTherese wrote:

Glad to hear you have more information and that you've figured out your surgery and reconstruction options.

There are some threads here for breast cancer patients who are ER+/PR-/HER2- that might be helpful.

See:

https://community.breastcancer.org/forum/137/topics/858729?page=1#idx_20

https://community.breastcancer.org/forum/96/topics/872099?page=1#post_5417999

((Hugs) and good luck getting a good surgery date!

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Jun 25, 2019 02:34PM eskfrussell wrote:

Thank you ElaineTherese! I’m feeling a lot more confident now that we have a good solid plan

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Jun 25, 2019 05:33PM nleerussell wrote:

I am so glad you feel good about the plan in place! That is huge (I know it was for me) ❤️ Take care of yourself and I’m glad everything went well

Dx 5/30/2019, DCIS, Left, 6cm+, Stage 0, Grade 2, ER+/PR+ Surgery 7/10/2019 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement
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Aug 4, 2019 12:26PM msphil wrote:

hello sweetie i found the lump in shower noticed change in nipple also was in medical field then in O R then city clinic in peds was also planning our 2nd wedding was overwhelmed at diagnosis. Had my cry decided to fight with Hope and Faith had 3mo chemo before the Lmast with reconstruction which my body rejected expander removed rush to hospital by fiance with very high fever then 3mo chemo after then got married practically bald. Then 7wks rads and 5 5yrs on Tamoxifen. Praise God I am a 25 yr Survivor just had 25 yr wedding anniversary. With Hope its possible. Wrote book on Amazon and Barnes n Noble The Healings of Breast Cancer"A Physical and Spiritual Healing of Body and Soul some proceeds went to American Cancer Society I still donate for others. God Bless Mrs Phyllis Alexander

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