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All TopicsForum: Just Diagnosed → Topic: ER/PR status...why do I not know this?

Topic: ER/PR status...why do I not know this?

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

Posted on: Jun 12, 2018 04:00AM

Krysm7 wrote:

I feel like everyone but me got this result on their pathology report lol. The report I have was given 30 hours after biopsy...could there still be more info to come? From what my GP said, I'm under the impression that I don't find this out until after they remove lump and lymph nodes. I feel like i don't know anything until these results. Yet I feel like I need to be more patient because from time I found lump to time of diagnosis was only 1 week so I was really lucky there. Just wish I knew somewhat of the course of treatment I may need...

Ps..I sure love this site, and am so thankful for all of you!!

Dx 6/8/2018, IDC, Right, 1cm, Grade 2, ER+/PR+, HER2- Surgery 6/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel
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Jun 12, 2018 04:14AM Georgia1 wrote:

Hi Krysm. That info should be in the biopsy report; you should ask for a copy from whoever did the test, or call and ask them if there is an addendum on the way. No offense to your GP, but most doctors aren't very familiar with today's cancer treatments.

There will be a second, definitive pathology report after surgery, but the preliminary results are usually good.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 12, 2018 04:38AM - edited Jun 12, 2018 04:38AM by Krysm7

thanks Georgia.

I do have a copy, no mention of ER/PR status on this report. Guess I just keep waiting. If nothing else, I will learn patience from all this


Dx 6/8/2018, IDC, Right, 1cm, Grade 2, ER+/PR+, HER2- Surgery 6/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel
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Jun 12, 2018 05:02AM SandR wrote:

I had the biopsy on a Tuesday and was supposed to have results on Thursday.  I called my Family Dr and they gave me a run around and would not give me the results.  I found out later they had the results Thursday PM and would not give them to me on the phone.  Get a printout of the pathology report and ask your DR for the ER PR and HER2 results.   I got the results the following Monday upon meeting with my breast surgeon.  My diagnosis is ER+ PR+ HER2- which means Estrogen Positive, Progesterone Positive, and HER2 negative.  I have the most common type of breast cancer in early stages.  

Hopefully, your results will not be cancer.  In case it is, my suggestion is to clear your calendar for 4 to 6 months.  Make yourself up a binder to keep copies of all your diagnosis, test results, Explanation of Benefits, Insurance Payments and stuff concerning cancer.  Before you get really scared, my experience so far has been little discomfort and surprise at how uneventful the process has been so far.  I had a lumpectomy with no pain at all during or after surgery. 

If your results are ER+ PR+ HER2- there is a test that has been all over the news lately and greatly benefited me.  When your tumor is removed, ask for the Oncotype DX test which took 2 weeks to get results.  My result was a 5 indicating Chemo was not beneficial.  Also my radiation treatments were reduced from 32 to 16.  I have 2 more and will complete radiation Wednesday.  No side effects other than 1 day being tired, at least so far . . . . 

Do not let medical staff run you over and not give your the answers you need.  If you do not understand, tell them and ask for explanation.  Hope this helps.


    


Dx 3/5/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/14/2018 Radiation Therapy 3/20/2018 Whole-breast: Breast
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Jun 12, 2018 05:20AM moth wrote:

The biopsy results should definitely have hormone testing listed. Sometimes, certain results change treatment. For example, some oncologists like to treat triple negative cancer with chemo first & then do surgery.

It's possible that they haven't done it yet & just did a rush on identifying the cells but after that they need to be stained and examined and you'll get hormone receptor status.

It's true the final pathology is usually done when the tumor is removed, but the biopsy nevertheless needs to list hormone status.

I wouldn't want to meet with the surgical or medical oncologist until I had a pathology report with that information on it.

Dx at 50; Left, IDC/DCIS 1.7 cm, Stage I, Grade 3, 0/5 nodes, pathology ER+/PR-, HER2-; Oncotype says ER-/PR-, HER2- Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy Hormonal Therapy
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Jun 12, 2018 12:57PM gb2115 wrote:

I had a biopsy on a Wednesday afternoon, knew it was cancer by Thursday at lunch, bit didn't get hormone receptor status until late in the day on Monday. I only knew about it because my nurse navigator was waiting and watching and called me as soon as she saw it. I didn't get a call from the doctor until Tues afternoon.

What I am trying to say is sometimes the results are not back immediately.

Do you have a nurse navigator where you are--someone guiding you through the process.

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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Jun 12, 2018 05:43PM Krysm7 wrote:

Thanks Everyone!

So hopefullly my surgeon will have the full results when I see him this week. Initially when I had biopsy last Thursday they said results wouldn't be in for 5 business days, which would be tomorrow. Hopefully there is a bigger report than the one I received Saturday.

I keep reminding myself that I only found my lump 10 days ago...and I'm this far already! Patience...

Hope all of you have a great day :

Dx 6/8/2018, IDC, Right, 1cm, Grade 2, ER+/PR+, HER2- Surgery 6/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel
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Jun 12, 2018 07:06PM Runrcrb wrote:

Krysm7,

You are good to remind yourself that this just started. The breast cancer diagnosis is urgent to you but rarely a medical emergency so the planning seems to go on forever. It’s OK to take time to gathering info and see doctors.

When you see the breast surgeon ask for the ER/PR/HER2 status as that drives many treatment decisions. The follow up surgery adds the stage and grade details. But the hormone stuff should be available from your initial biopsy.

All the best to you as you learn more.

Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/21/2016 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/8/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/22/2017 Arimidex (anastrozole), Aromasin (exemestane) Surgery 12/12/2017 Reconstruction (right): DIEP flap
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Jun 13, 2018 03:46AM beach2beach wrote:

I remember when I had the biopsy on Thurs, by Fri I knew I had bc, but I did not get the hormonal status until I believe Tues/Weds of the following week. That waiting made me nuts too.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 13, 2018 04:07AM - edited Jun 13, 2018 04:08AM by chikita1112

You and I are having the same experience with regard to not getting information that is critical in making an informed decision. I had my biopsy on June 1, met with the surgeon the following Tuesday where I learned it was idc grade 2 but no other information. She said she would call me when the addendum came in with the hormone status as soon as it came in. I called everyday after that up until Friday when they called me with no results yet. I still don't know and am meeting with the oncologist tomorrow! At this point, we are hoping he will have it. Needless to say I have lost faith in the surgeon and am considering asking for a new referral for upcoming surgery. It's been one month now since I failed my mammogram...i found out quickly that dealing with breast cancer requires tons of patience. I hope you find out soon. The waiting is the worst.

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Jun 13, 2018 05:29AM Meow13 wrote:

It is very true that GPs don't know as much as a specialist oncologist especially one who specialises in breast cancer. I have just been talking to my brother in law, who is a general practitioner, about the differences in treatment for er+ pr- BC vs er+ pr+ BC and the oncodx newest guidelines. He was not at all up to date. I sent him links to all the info I have collected. He has a couple BC patients he prescribes tamoxifen to. He has another woman who goes to an oncologist in Boston and is involved in a study, so that woman gets her medications from the oncologist.

He wasn't aware that the pr status was an important part of the dx. Of course he understands the difference between triple negative, hormone positive and her2 positive. Interesting stuff we also talked at length about immunotherapy and dna. Someday, I hope in my lifetime we really can get essentially cured.

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Jun 13, 2018 05:29PM claireinaz wrote:

I didn't get my complete results until I met with my oncologist for the first time. I was still reeling from the shock of finding it was cancer and didn't really focus on the ER/PR answer until then. So from the time I had the lumpectomy to the first meeting with my MO, it was about 2 weeks. My surgeon shared the initial results with me when I woke up from surgery.

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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Jun 13, 2018 05:57PM Kelligirl5 wrote:

I did not know ER/PR/HER2 status until after my surgery! And then on that I am ER-, they did not test for anything but that with DCIS. It may depend on the type? I have/had Paget's Disease so my biopsy was different. It immediately showed the Paget's cells which are different from the underlying DCIS cells. I had no other signs on any of my scans, just on the skin itself so nothing else to actually biopsy. Once they did the surgery they were able to find the actual DCIS and test it.

Dx 3/31/2018, DCIS/Paget's, Right, 2cm, Stage 0, Grade 3, 0/3 nodes, ER- Surgery 5/14/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/5/2018 Whole-breast: Breast
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Jun 13, 2018 06:10PM Krysm7 wrote:

hi everyone. Thanks for all your responses.

I see my surgeon late this afternoon. Hoping I will know more after that. I am trying hard to relax, stressing won't make a better outcome. But it's so hard!

Wish me luck!!! Have a great day everyone.

Dx 6/8/2018, IDC, Right, 1cm, Grade 2, ER+/PR+, HER2- Surgery 6/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel
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Jun 15, 2018 01:48AM Primula wrote:

Thanks so much for posting about this, Krysm7. It's been over a month since my DCIS diagnosis, and I have no information on ER, PR, or HER2 status. Every doctor I've talked to so far (my primary doc, a breast surgeon, and 2 radiation oncologists) have noted the absence of the information in my records. For the first few weeks, the response was, "Oh, that stuff can take time." Now it's "Oh, maybe they didn't have enough tissue from the biopsy to perform add'l staining." They took 4 samples out of me! I've finally lobbed a question about it to the Cancer Center, but I'll be pretty annoyed if I went through all that & they didn't even perform all the standard analyses.

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Jun 20, 2018 07:05PM Krysm7 wrote:

ewww...that's a long time to wait! I don't understand what those status' mean, but I know they are important for treatment plan. I finally got mine on Monday. Are you having surgery? I've heard that sometimes you don't get those results until they biopsy the lum

Dx 6/8/2018, IDC, Right, 1cm, Grade 2, ER+/PR+, HER2- Surgery 6/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel
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Jun 20, 2018 07:26PM Peregrinelady wrote:

So, what did you find out, Krysm?
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/17/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Jun 20, 2018 07:30PM Krysm7 wrote:

ER/PR+ HER2- :


Dx 6/8/2018, IDC, Right, 1cm, Grade 2, ER+/PR+, HER2- Surgery 6/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel
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Jun 20, 2018 07:39PM Peregrinelady wrote:

👍
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/17/2016 Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)

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