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Topic: Newly diagnosed

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

Posted on: Nov 24, 2019 04:46PM

Shelly9 wrote:

My biopsy says things don't understand can someone please tell me there opinion ? The initial levels A1 showed a few small glands and cellular clusters extending into the fat with associated microcalcifations suspicious for invasion . Immunostains for p63 ck5\6 were ordered to confirm invasion together with biomarkers . The immunostains confirm myoepitheliial cells in association with areas of dcis .However the area of concern for invasion was not evident in these deeper levels . Very worried please anybody respond !!! Also they did confirm malignant just wondering how bad it could be ? Then the diagnosis also says micropapillry and crib form associated with crib form . Sorry it's so long !!!

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Nov 24, 2019 07:17PM Rrobin0200 wrote:

can you pls share your report?

Dx 3/6/2017, DCIS, Left, 1cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 3/31/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Nov 24, 2019 07:47PM Shelly9 wrote:

how do I go about doing that ? Sorry I'm a newby 😭

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Nov 25, 2019 06:17PM obsolete wrote:

Hi Shelly, so sorry that you are finding a reason to join us, although you're in good company here. Please take one baby step at a time, and maybe inquire with the Nurse Navigator at your hospital to direct you to the correct resources on your medical team.

It's difficult to respond to your question without having seen your pathology report. Based on some of your observations, it's possible your report indicates you might have a Micropapillary DCIS mixed with Cribriform DCIS with possibly some invasive cells. The extent of any invasion cannot be fully determined until your tumor is removed for pathology review. But here's a link to one possible scenario: "Significance of Finding Micropapillary DCIS on Core Needle Biopsy" Academic Radiology, Vol 18, No 7, July 2011

It's a steep learning curve, so please take it slow and easy. Hugs to you and best wishes.

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Nov 27, 2019 08:51AM claireinaz wrote:

Sorry you're here to join us, but we are a good group with lots of support and understanding (and solid dependable information for the most part, too).

Tell (not ask) any of your doctors, before they even open their mouth to talk to you in any appt, to talk to you slowly and use "plain language", like they'd speak to their own children. I write this not to have anyone talk down to you, but to inform them to dial back the specific medical speak (that only they understand) for you until you can handle and understand your own dx. When we are in panic-fear mode, we hear very little of what is said to us about anything because we are terrified for our lives.

Ask them for hard copies of all your reports and ask for translations right then when they use a term you don't understand. "What exactly does that mean?" is a great way for them to slow down. You have hired them for care, and are paying them (through your insurance premiums); remember, they are working for YOU. You need your money's worth at this particular time in your life and this is one way to get it. Don't let anyone intimidate you by speaking in a language you don't understand. Nothing is more important than demanding the best care you can get and deserve, and explaining your dx and tx in a language you understand it is very important.

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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Dec 2, 2019 09:59AM KIDI919 wrote:

I was dx in Sept 2019 with IDC & had a lumpectomy (left) Nov.22nd. My follow up is tomorrow and I am hoping to get my questions answered. I do know my genetic testing was neg, tumor was less than a cm & it was ER+. I have been reading a lot, trying to make up my mind about how much treatment I am willing to go thru. Thank you for listening because sometimes I feel like I'm whining about nothing (when others have worse problems than BC).

Dx 9/17/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/15/2020 Whole-breast: Breast
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Dec 2, 2019 10:02AM KIDI919 wrote:

Shelly 9 I hope you get some straight answers soon. It's horrible waiting. Best of luck.

Dx 9/17/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/15/2020 Whole-breast: Breast
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Dec 2, 2019 10:14AM Yogatyme wrote:

Kidi, you are certainly not whining about nothing. You are being treated for bc and despite the stage, grade, etc, it is still bc and scary to say the least. I understand your thinking as my bc was small, caught early, etc and I have felt like I was whining over nothing in comparison to my brother who is really battlingesophageal cancer and clearly suffering. My niece reminded me over Thanksgiving that my bc is not “nothing” and has no guarantees I won’t have recurrence. I know she is right but I limit my discussions about my bc w family and look to DH, friends and this forum for my support. Take good care and don’t discount your situation.

Yogatyme Surgery 3/3/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right
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Dec 2, 2019 11:16AM KIDI919 wrote:

I thank you for your kind words. So glad to find this forum where our troubles can be shared.

Dx 9/17/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/15/2020 Whole-breast: Breast
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Dec 11, 2019 02:11PM Kikilee wrote:

Hi, I am new here...just had my second treatment 10 days ago. At first, I was handling it pretty well..maybe I was in denial a bit....After my first treatment my biggest complaint was bone pain, and broke it in sores and acne on skin...not to mention hair loss....I never got the nausea and vomitting. This second time I got a little more fatigue and some bone pain. Again,never got the nausea and vomitting..however I am getting a headache that I've pretty much had for 7 days now and I am scaring myself to death that it has spread to my brain. Can anyone tell me if it is normal??

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Dec 11, 2019 03:44PM Moderators wrote:

Hi Kikilee and welcome to,

We're so sorry for the reasons that bring you here, but we're really glad you've found us! You're sure to find our Community an amazing source of advice, information, and support -- we're all here for you!

While you may get some responses on this thread, we wanted to point you to our Chemotherapy forum, specifically the December 2019 Chemo thread, where you can talk with others currently undergoing chemotherapy so you can compare experiences. Pop in and introduce yourself!

In addition, the main site's page on Headaches lists some types of chemotherapy as a cause for this side effect. There's also some good tips to help alleviate them.

We hope this helps and we look forward to seeing you around the boards!

--The Mods

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Dec 11, 2019 06:34PM MinusTwo wrote:

Kik - if you go to My Profile, you can put your diagnosis & treatment specs and make them public. It will make it easier for people to answer if they know what your facing and what you're taking.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 17, 2019 01:48AM MsAbi wrote:

Hi - I am a “newbie inductee” to this community...certainly not by choice, but I sure am glad to know that I am welcomed in anyway 😊

In August (2019) I felt an odd, small tube like spot in my right breast but didn’t panic because I had just had a “normal” annual mammogram in November 2018...besides, there was no real history of breast cancer in my family.

Although the thought of breast cancer never entered my mind, I decided I would just mention my finding at my annual checkups in October with my Primary Care Physician and my Gynecologist.  Well, I was drop-kicked with an Invasive Ductal Carcinoma diagnosis on November 6th - and NOTHING after the word carcinoma registered that day!

Fast forward (past being zombified, petrified and cried out), I prayed up and went into fight not flight mode. I reached out to medical professionals, family members, survivor friends and organizations that could assist me in getting my journey in full gear! 

Armed with my support person and (with permission) a “re-call assistant” mini tape recorder I met with a breast surgeon and other members of the oncology team. My options and treatment plans were clearly laid out, my questions and concerns were addressed and my surgery has been scheduled  for January 3rd. I left feeling comfortable and confident with the team and the treatment plans...but I feel like I want a second opinion. Is this a reasonable thought and has anyone else felt this way???

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Dec 17, 2019 07:40AM Moderators wrote:

MsAbi, welcome to, although we're sorry you've had to join this great Community!

As we say in our Treatment and Side Effects section of our main site, "Simply getting a breast cancer diagnosis is good enough reason to seek a second opinion", so why not if you feel like it! We're sure you'll hear from other members here too but, in the meantime, if you decide to pursue a second opinion, here's more information on how to do that, from the main site. Hope it helps!

Please, let us know how you're doing.

The Mods

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Dec 17, 2019 08:13AM Badluckbdaygirl wrote:

Hi There, I have been lurking for awhile on here. I don’t know my official diagnosis, but I do know I am early stage and 7 days out from a double mastectomy and tissue expander surgery. I’m sure I have a lot of questions. One being, I opted for a double because for the last 12+ years I almost always get called back. My breasts were extremely dense and have had biopsies, etc over the years. This time it was finally positive. I am still very premenopausal and although I tested negative for the BRCA (sp?) gene, I am considering removing my ovaries as I am PR+ 98% (from biopsy). Is that extreme? I have felt comfort for the last few months from this website. Thank you for reading

Dx 10/28/2019, IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 12/10/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 12/13/2019, LCIS/DCIS, Right, Grade 2, 0/3 nodes Dx 12/13/2019, IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Hormonal Therapy 2/27/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/6/2020 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant
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Dec 17, 2019 09:52AM MsAbi wrote:

Thank you for your response, it has reenforced my decision to get that second opinion!

I am grateful for forums like this - and I will keep the community posted!


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