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Topic: Newly Diagnosed and Frustrated

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Jan 17, 2020 10:56PM

Meg5000 wrote:

I had a biopsy of two masses in my left breast (2.5 cm and 1.5 cm). There is also suspected lymph node involvement. I was told it's invasive mammary carcinoma, but I don't know what type. I tried to get a copy of my report, but was told it was being held. I had a breast MRI this morning. I have a consultation with a surgeon on January 29.

I'm frustrated with the lack of information and the wait to see a surgeon. Do you always see a surgeon before an oncologist?


Dx 1/10/2020, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2+
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Jan 17, 2020 11:04PM - edited Jan 17, 2020 11:05PM by WC3

I originally was directed to a surgeon who referred me to an oncologist but I switched to a more comprehensive center where I saw them both on the same day.

I've heard of women who didn't meet their oncologist until after surgery. I'm not a fan of that sequence of things.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 17, 2020 11:23PM Meg5000 wrote:

That sounds better than what I'm doing. My referrals are going through a radiology center.

Dx 1/10/2020, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2+
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Jan 18, 2020 12:06AM - edited Jan 18, 2020 01:34PM by MinusTwo

I knew an oncologist who had treated a friend. I had him recommend a surgeon. Along with getting a recommendation from my GYN. Those were both doctors I trusted.

Meg - the reports are yours. It doesn't make sense why you can't get a copy.

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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Jan 18, 2020 10:38AM momand2kids wrote:

Hi

it is alot of hurry up and wait... I saw the surgeon first to figure out what we were going to do-- then I picked an oncologist at another hosptial, so I did not meet her until after the surgery-but truth is, they cannot do much until they have a pathology report that really tells them what is going on-- I was more in a hurry to have the surgery----but there is alot of stopping and starting in this process-- you have to be your own best advocate...



Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/24/2008 Lumpectomy: Right Chemotherapy 1/15/2009 Adriamycin (doxorubicin) Radiation Therapy 3/22/2009 Breast Hormonal Therapy 6/14/2009 Femara (letrozole)
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Jan 18, 2020 02:03PM WC3 wrote:

For triple positive and triple negative breast cancer, though there is some controversy about it, some places like to do chemotherapy first to see if it's working.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jan 18, 2020 04:28PM windingshores wrote:

You should be able to get your pathology report. Do you have a patient portal? Or go to the medical records department.

The results are relevant to what you do next. Some people do "neoadjuvant" therapy meaning before surgery. You need to know whether you are HER2+, or ER/PR+, grade and possibly other info like ki67%.

I met the surgeon and oncologist on the same day. But didn't really deal with oncology until after mastectomy. It could be different for you though.

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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Jan 19, 2020 02:17PM Georgia1 wrote:

Hi Meg. I'm so sorry you are in this early, frustrating phase; everything does seem to move so slowly. If you want to be proactive before your January 29 appointment I would suggest:

  • Check out the surgeon you will be meeting with. Does he/she specialize in breast cancer? Published articles or led a clinical trial? Work as part of a breast cancer center?
  • Then I would research surgeons at other nearby hospitals and book a second opinion appointment now.
  • Also get copies of all of your reports and scans.
  • You might also want to order a book called "Navigating Breast Cancer" by a nurse named Lillie Shockney. It is really clear and valuable information.

Best of luck and stay in touch with us. We're here to help, and as others have said a surgeon is often the first step.

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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Jan 19, 2020 03:13PM smc123 wrote:

Meg5000, My process moved pretty quickly and I was still fortunate enough to get a second opinion . I was diagnosed on Feb 1 and had my first round of chemo on Feb 23. I was triple negative and both MO’s advised chemo first...then surgery, and last radiation. My process with two different hospitals was first I met with surgeon then with MO recommended by surgeons. I ended going with the second opinion hospital that was able to schedule all of my additional tests quickly. The first hospital had me waiting 3 weeks for additional tests while the other was able to haveall of my tests completed within 3 days. Hang in there...it’s very overwhelming...I was blessed with a friend good with research and told me about the 2nd hospital. I probably would have stuck with just my gynecologist recommendation but my friend researched things for me and I got the second opinion. I was so grateful for her help. Good luck

Dx 2/1/2016, IDC, Left, Grade 3, ER-/PR-, HER2- Chemotherapy 2/23/2016 AC + T (Taxol) Surgery 8/1/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/4/2016 Breast, Lymph nodes Surgery 4/3/2017 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jan 19, 2020 09:20PM AliceBastable wrote:

I'd be MUCH less concerned about a surgeon publishing articles or doing research. All those do is take time away from doing actual surgery or having patient contact. Researchers are researchers and surgeons are surgeons. They're not interchangeable, nor do they overlap.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jan 19, 2020 09:43PM smc123 wrote:

I probably could have done a better job explaining myself...my friend did not research medical journals or published articles of surgeons. She spoke to other breast cancer survivors and looked into other treatment centers for me. It was so helpful to me and I will be forever grateful for her help. Because of her “research” I got a second opinion from a hospital/treatment center that was not on my original radar. The second opinion hospital was a better fit for me.

Dx 2/1/2016, IDC, Left, Grade 3, ER-/PR-, HER2- Chemotherapy 2/23/2016 AC + T (Taxol) Surgery 8/1/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 10/4/2016 Breast, Lymph nodes Surgery 4/3/2017 Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Jan 20, 2020 06:24AM godisone wrote:

Your anxiety and frustation is so understandable. I had a similar experience and i met my surgeon first. I was so terrified with the dsclosure that I couldn't even think of the requirement of a oncologist i just wanted to get rid of whatever was inside me.It was only a month after the surgery that i realised about the oncologist. I found it with the help of Google with reviews and everything and I am glad i found a good one( atleast, i think so. He is patient, smiles often and is a phone call away).

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Jan 20, 2020 07:01AM April0315 wrote:

It certainly felt like things were taking forever to get moving. I also met with my surgeon when diagnosed before anyone else. She referred me to all other specialists.

Hang in there. I also had a nurse navigator that I wish I had used more. Do you have access to that? They can really help get the ball rolling and make sure nothing gets missed.

Dx 2/28/2019, IDC/IDC: Papillary, Right, Stage IB, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 4/12/2019 Lumpectomy: Left, Right Dx 4/18/2019, ILC, Left, 2cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Chemotherapy 5/12/2019 AC + T (Taxol) Hormonal Therapy 10/15/2019 Femara (letrozole) Surgery 11/15/2019 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right)
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Jan 20, 2020 09:12PM Meg5000 wrote:

Thanks for the responses! I was able to obtain additional information today. The pathology report showed that both lesions in my left breast are grade 2 invasive ductal carcinoma with positive ER. I also got my MRI results that showed an additional lesion in the left breast and also two lesions in the right breast that did not show on the mammogram. I'm really scared about the right breast and want a biopsy before I see the surgeon next week. The results indicate that the lesions could be DCIS and the doctor who spoke with me about the results said that was a good thing. I disagree. If this is really bilateral breast cancer, it's not good at all. The doctor told me to see the surgeon next week, although I think the right breast should be biopsied first. The MRI report suggests it.

I'm looking into a cancer center, there is only one in the city that I live in.

Dx 1/10/2020, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2+
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Jan 20, 2020 09:31PM Legomaster225 wrote:

Meg, I think it's ok to meet with the surgeon now but I would still try to get the biopsy on your right side if you can before your appointment. I met with the surgeon first, then the oncologist. I then met with the RO and we had a tumor board meeting where they were all together to go over the plan. I too have bilateral cancer. I had neoadjuvent chemo and one lymph node was positive before chemo but it was free of malignancy at surgery. My left breast was supposed to be prophylactic :-(

Do you have a nurse navigator or tumor board at your hospital?

Diagnosed at 50. Currently 54. Oncotype score 39. One node positive at diagnosis negative after preadjuvent chemo. Bilateral cancer discovered at BMX. Left breast was supposed to be prophylactic. :-( Dx 12/3/2016, IDC, Right, 3cm, Stage IIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Chemotherapy 1/19/2017 AC + T (Taxol) Dx 6/22/2017, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 6/22/2017, IDC, Left, <1cm, Stage IB, Grade 1, 0/0 nodes, ER+/PR+, HER2- Surgery 6/22/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 8/22/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/17/2017 Hormonal Therapy 9/9/2018 Aromasin (exemestane)
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Jan 20, 2020 09:46PM Meg5000 wrote:

I'm going to push for a referral for a biopsy. I want the full picture so I can discuss my options. I don't know if the cancer center has nurse navigator or tumor board. If it turns out to be bilateral, I'll get one opinion locally and a second at Mayo in Jacksonville. There is not a lot of information online about bilateral breast cancer, as I'm sure you know.

Dx 1/10/2020, IDC, Left, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2+
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Jan 20, 2020 10:51PM Emelle wrote:

I didn’t get to see my oncologist until after the surgery. He dropped past whilst I was still an inpatient. Chemo couldn’t commence until the wound had healed as the chemical cocktail can affect the healing. When you see your surgeon he should be able to provide you with a copy of your results, or at least write down the stage and type of cancer down. This is so important as it affects the types of drugs you are given during treatment.

Sometimes, when the tumour is large, you might have to do chemo first to shrink the tumour before surgery. In this case, you would see your oncologist earlier.


Triple negative and ER-/PR- HER2+ tumours grow faster than other types of breast cancer. If your surgeon or oncologist knows you have these they will be anxious to start treatment ASAP - Do not delay treatment, which I was tempted to do at the time...which looking back was completely ridiculous! In my case, my tumour tripled in size in the 9 days from diagnosis to surgery which meant I went from Stage 2 to Stage 3 cancer during that 9 day wait time.

Good luck with your treatment.

Dx 7/16/2014, IDC, Right, 5cm, Stage IIIB, Grade 3, 1/10 nodes, ER-/PR-, HER2+ Surgery 7/24/2014 Lumpectomy: Right; Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Silicone implant Chemotherapy 8/27/2014 CEF
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Jan 24, 2020 04:41PM - edited Mar 30, 2020 12:21AM by sarahlayng

Because some of you are discussing medical records/portals and second opinions, we wanted to let you know we've partnered with Ciitizen, a new service that can help you collect and organize your entire health history in a secure online profile — at no cost. Through this, you can have digital access to all of your medical records whenever you need them.

To learn how Ciitizen can help you take control of your health information (a daunting task for many!), keep it organized, and make it easy and secure for you to access it, visit www.ciitizen.com/BCO.

You can also share your experiences in this Topic on managing medical records. Thank you and we really hope this can be helpful to you ! (PM us with feedback or questions)

p.s. for now, only for those getting treatment in the US

To send a Private Message to the Mods: community.breastcancer.org/mem...

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