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Topic: Got the call yesterday - IDC at age 40

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

Posted on: Oct 11, 2018 04:53AM

evily wrote:

Hi all! A year ago I was on this forum because after having my very first mammogram, I had to have 4 core needle biopsies and a surgical biopsy to find out I had ADH in my right breast. No biggie, right? Well, a year later now, my 2nd round of mammos showed all sorts of new crazy stuff, and last week I had 4 more core needle biopsies (two in each boob, because I am an equal opportunity human pincushion). The breast that had ADH last year came back fine, but now I’m told I have IDC in my left breast. I’m just stunned.

I have an appointment with the breast surgeon next Monday, at which point I’ll find out more about stage, grade, next steps, etc. So right now I’m in that place of not knowing much and worrying about everything. Yay.

I’m sure I will spend a lot of time between now and Monday on these forums just reading through other posts, trying to prepare myself for what questions I need to ask. If anyone has any words of wisdom, feel free to share. It sucks that any of us are here, but it’s good to know we’re not alone in our fight. :)

Cheers,

Emily

Dx at age 40 Dx 10/10/2018, IDC, Left, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 11/13/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 11, 2018 04:58AM windingshores wrote:

The wait is hard. I did get my pathology results before I met with the doctor, one time at medical records and another time through the portal, if that helps. If you have to wait until Monday, take walks and watch a lot of movies if you can, or get a few Ativan!

Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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Oct 11, 2018 05:19AM - edited Oct 11, 2018 05:19AM by Moderators

Emily, we're sorry you got such unwelcome news, but wanted to let you know that we're all here to support you!

We know you'll get lots of responses from other members here, but we recommend you to visit the section Breast Cancer 101 of the main Breastcancer.org site. It is place designed for those newly diagnosed that will help you learn more about what to expect now and what to ask your doctors. We hope this helps!

Good luck with everything. Please, let us know how you're doing!

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Oct 11, 2018 08:12AM claireinaz wrote:

It sucks, I know. And I remember the shock and then the fear and then the anger when I began to wrap my mind around the news. Just know that it's treatable and in many cases curable depending on status, grade etc. Look for as many silver linings as you can. I refrained from reading everything and avoided Dr. Google who is usually a quack when it comes to alarmist info on this disease. I did examine research related to my own subtype but when I did, I made sure it was a large sample and that the research was as current as it could be.

You'll find so much support here and that helped me as much as anything. I felt singled out and isolated, and knowing there were so many women (and men) going through this at the same time as I was made me feel more hopeful.

I also sought out women who had dx'es from years ago, and let those good stories drive my thinking. Still do.

Hugs,

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Oct 11, 2018 10:16AM gb2115 wrote:

Sorry to hear about your diagnosis. It's really hard, but you will get through this. And it's ok to be upset.

Equal opportunity human pincushion---that was really funny!


Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Oct 11, 2018 10:22AM Ingerp wrote:

Lots of sympathy from me. I was so not expecting to be going through this again. All I can say is it is what it is and you will get through it, really you will. After the “how the eff did I get here?” begins to recede, you’ll put your big girl panties on and deal with it. Hang in there, honey.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Chemotherapy 5/18/2018 Taxol (paclitaxel) Radiation Therapy 8/20/2018 Whole-breast: Breast
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Oct 11, 2018 12:51PM GreenHarbor wrote:

Hi Emily... I was in a very similar situation a few months ago. I had been getting mammograms every 6 months for 2 years on my right breast due to having calcifications. I was looking forward to only having to get an annual mammogram again, but a cautious radiologist with sharp eyes spotted something on the left side. After a needle biopsy, I was also diagnosed with IDC. I will repeat what others here have said and tell you to avoid Doctor Google. I would also be careful about the forums you visit here on BCO, at least until after you meet with your surgeon and get your pathology report. In the meantime, take good care of yourself- try and eat well, get some exercise every day, try and get plenty of sleep. Try and distract yourself as much as you can- read, binge watch a new TV series, knit... I had a really hard time at first with taking things step by step and not leaping ahead. I felt very out of control until I had met my surgeon and medical oncologist. Once I had a treatment plan and asurgery date, I felt a little calmer. I wish you the best; keep us posted! ((Hugs))

Dx 7/5/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 8/23/2018 Lumpectomy: Left Hormonal Therapy 9/15/2018 Radiation Therapy 10/1/2018
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Oct 12, 2018 11:48AM kells2357 wrote:

I too am newly diagnosed, also IDC. On Monday the 8th. A date I will always remember now. Words I have always been afraid of actually..Female cancers have always run rampant through my family unfortunately. Both sides have been affected. My mother lost her battle with breast cancer in 2001. She was diagnosed at 43, and passed at 53. I am 43 now. For years I was scared to do the gene testing (and also financially unable to). Only pretty recently did insurance companies begin to pay for it, and consider it 'preventive' instead of 'preexisting'. I have religiously been getting mammograms since I was 30. Anyway, my gynecologist took the blood samples and sent them in. That was about 4 months ago. About a month later, I was in for my annual checkup, and he informed me that I in fact had tested positive for BRCA1, with a 48.5% probablilty. That alone was a lot to come to terms with. That is basically a 50/50 chance. So, after many days of thought and talking with friends and family and doing my own research, we decided to move forward with a preventive double mastectomy with immediate reconstruction. I even had my consult with the plastic surgeon.

It took a lot for me to be okay with that decision. But I was. It was better than getting cancer I thought. So, one of the pre-op tests was a breast MRI. A few days after the MRI was done, my doctor called me back and said it showed something that needed further evaluation. So he ordered a breast ultrasound. When I went for that, they ended up doing a biopsy right then. Well, Monday was when I heard the words. The C word. Yuck. I freaked out, left work, cried with my sweet husband for a couple of days. Had my first meeting with the general surgeon on Wednesday. He is wonderful. He spent over an hour with me. Talking, explaining, answering questions. This coming Monday the 15th, I have another consult with the plastic surgeon. I haven't seen an oncologist yet, I have been approved and I know who the doctor is, they just haven't called me for an appointment yet.

It's crazy and miraculous at the same time to think that if I hadn't planned on getting the girls chopped off to PREVENT cancer, I wouldn't have known that I already HAVE cancer! By the way, the mammo I had in August was 'perfect'......

I have read some amazing and inspirational things in these forums. I have total admiration for everyone here :-) xo

Kelly

Kelly
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Oct 12, 2018 03:06PM - edited Oct 12, 2018 03:07PM by Dovely

Green harbor, I totally agree on the point about being careful about what forums you visit here as well. This is an amazing resource, but it can feed your fears if navigated to quickly without the right info. And every case is different.

Dx 10/9/2018, DCIS/IDC, Left, 1cm, Stage IB, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 10/18/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 10/24/2018 Lymph node removal: Left, Right; Mastectomy: Left, Right Surgery 11/7/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 12, 2018 03:38PM evily wrote:

Thank you all for for your kind words and advice! I have done very well with avoiding Dr. Google these last couple of days. I am fortunate in that I am currently on vacation with my family, including my aunt who is a breast cancer survivor. She has providing me great support and wisdom. And my family has been providing excellent distraction!

I got a call today from my Oncology Nurse Navigator and she had some more pathology results for me that seem encouraging: Grade I, hormone receptor positive, and HER2 negative. I remain very optimistic about what the future holds. :)

I'll be back on Monday after I meet with my surgeon and know more about my treatment plan. I am so thankful for this supportive place!

Dx at age 40 Dx 10/10/2018, IDC, Left, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 11/13/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 12, 2018 04:28PM star2017 wrote:

looks like you caught it early. Best wishes to you

Dx@37, pregnant, BRCA2+ Dx 9/2017, DCIS/IDC, Right, 6cm+, Stage IIIA, Grade 3, 4/8 nodes, ER+/PR+, HER2- Surgery 10/17/2017 Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 11/29/2017 AC + T (Taxol) Surgery 4/18/2018 Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Radiation Therapy 5/21/2018 Whole-breast: Breast, Lymph nodes Surgery 10/24/2018 Prophylactic ovary removal; Reconstruction (left): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 13, 2018 07:36AM claireinaz wrote:

Hi Kells,

Welcome to the club none of us wanted to join. I'll simply say that this is was the best place I could have found for support and information. Let us know what your status is, and when you do know, there are other discussion boards where you'll find what I did: kindness, encouragement, good outcomes, great information for treatment and treating side effects from that treatment, and everything else you'll need to navigate through this chapter of your life. It's only a chapter, and not the epilogue, so try to remember that. You'll get through this, and it sounds like you have a wonderful husband who will be there for you. I did too, and couldn't have done it without him.

One thing I did do--to both the original poster and for Kells: I was careful who I talked to in the beginning. I found so many people wanted to share horror stories about their own family member or friend who had a similar dx and although they were well-meaning, they weren't helpful. I only wanted to know about women who were years out from their dx. Just know that oftentimes well-meaning people can really throw us off and turn a positive feeling into a negative one.

Hugs

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Oct 17, 2018 04:28PM msphil wrote:

I agree sweetie we re not alone thru this and with Hope Positive thinking I 've gotten through it all now a 24yr Survivor Praise God we can make it. msphil idc stage2 0/3 nodes 3mo chemo before and after Lmast at age 42 no family history and making wedding plans for our 2nd marriages.got married after chemo before 7wks rads and 5yrs on Tamoxifen.

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Oct 17, 2018 04:57PM evily wrote:

Again, thank you all for your kind and encouraging words. Despite the rough road that lies ahead, I am feeling very positive and am grateful to have this forum as a source of support. I have met with my breast surgeon and plastic surgeon now. The breast surgeon said that although she hardly ever makes this recommendation, given my age, breast density, and rapidity of changes in my breasts over the last year (KI-67 is 60% !!!), she is recommending a bilateral mastectomy. I actually had a feeling this would be the recommendation before I even went in, so I wasn't too upset. Frankly, I am ready to be done with my little cancer factories before they start churning out worse cancer. I am hoping for direct-to-implant for reconstruction, but we won't know for sure if that is an option until I get into surgery. Tentatively scheduled for November 13. I'll also be undergoing genetic counseling. I may not need any radiation or chemo, which would be a blessing. I will need to be on hormone therapy though. Ugh. Well, whatever it takes to be well and live a long healthy life. I WILL beat this! :)

Dx at age 40 Dx 10/10/2018, IDC, Left, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 11/13/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant

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