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Topic: Early detection but late diagnosis

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Sep 24, 2019 12:04PM - edited Sep 25, 2019 02:07PM by Danbee

Danbee wrote:

I'm tired of getting on these boards, talking with other patients at my cancer center, encountering other breast cancer patients and discovering that yet another woman was misdiagnosed, wasting valuable time. Can this thread be a headcount of women who's doctors initially downplayed symptoms and did not provide diagnostic proof that the lump was "just a cyst," for example.

I'll start.

  • I was 33 when I first felt a lump. First doctor said I had 'lumpy breasts' and called it a cyst.
  • Nervous I went for second opinion 1 month later. Second doctor diagnosed me with fibrocystic breast disease, like the first doctor. Still no diagnostic tool used.
  • 6 months after that went back to first doctor for another breast exam. Again, no diagnostic tests
  • 6 months after that went back to 2nd opinion doctor. He sent me for mammogram. Boom. Stage 4.

Chime in here if you were dismissed because:

  • "breast pain can't be cancer."
  • "you're too young"
  • "you don't have a family history"
  • “The bump is movable and not fixed

Chime in here if your lump was not biopsied upon first discovery. Or ultrasound/mammogram misinterpreted.

Chime in here if your doctor needs a refresher course on breast cancer (yes, it can cause pain). Cheesy...but "catch" requires two people.

My doctors gambled and I lost. And as tragic as that is it for myself and my family, it breaks my heart that my story is not unique.

One…

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Sep 24, 2019 02:13PM - edited Sep 24, 2019 02:21PM by Lexica

Yes to all of these:

  • "breast pain can't be cancer."
  • "you're too young"
  • "you don't have a family history"


...plus two US and one mammo that missed that my palpable (and obviously growing) lump was cancer. Diagnosis came after my 3rd US, 2nd mammo, 3rd exam and 8 MONTHS of this thing growing in me. After the mammo that came back birads 5, the BS that had seen me over those 8 months came in with an embarrassed 'oh shit' look like he couldn't believe it. 12 cm tumor measured via imaging before neoadjuvant chemo; 12.5 AFTER chemo. Couldn't they just have been aggressive and biopsied me first thing? I ask that to myself all the time... how much better off would I be? I know it's not stage 4, but I also know my prognosis with my stats is not favorable...

Diagnosed at 34. 2 years of Ibrance via PALLAS trial (ends 4/2020) Dx 7/2017, IDC, Left, Stage IIIC, Grade 2, ER+/PR+, HER2- (IHC) Surgery 12/15/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right Dx 12/27/2017, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 3, 5/11 nodes, ER+/PR+, HER2- (IHC) Radiation Therapy 1/16/2018 Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy AC + T (Taxol) Hormonal Therapy Aromasin (exemestane)
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Sep 24, 2019 02:18PM Trishyla wrote:

I wasn't, but my dear friend, Marcela was. She developed a large lump while breastfeeding that was dismissed as mastitis. She felt like something was wrong, but no one would take her seriously. Finally she insisted on an ultrasound and they discovered a tumor. The tumor was triple negative so they ordered an MRI just to rule out metastasis. Surprise. Stage IV de novo.

Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Sep 24, 2019 02:23PM Bheg79 wrote:

Ditto to all of this for me as well - had breast pain and a thickening in Feb. 2017 - was told many times by my GP it’s just my hormones/fibrocystic breasts (I was 37 at that time) - went to a breast surgeon and breast assessment clinic for second opinions - had mammogram and ultrasounds - was told by all of them just cystic breasts - my thickening was very palpable - went for my follow up ultrasound 1 year later and saw a different radiologist who totally listened to me this time and pretty much told me that day it was cancer - I did go on to have biopsy and stuff - I do also wonder if there would be any difference for me if they would have just biopsied it from the start. It definitely would have been smaller - makes me so mad

Dx 3/27/2018, IDC, Right, 3cm, Stage IIA, Grade 3, 0/6 nodes, ER+/PR+, HER2+ Surgery 4/17/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 6/17/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/17/2018 Herceptin (trastuzumab) Radiation Therapy 11/27/2018 Whole-breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 24, 2019 03:18PM WC3 wrote:

I found the lump when I was 36. My doctors didn't brush me off and did order testing but it was missed and I was never told the radiologist didn't see it, just that it was normal breast tissue.

I should have been referred for a biopsy or MRI.

I wasn't properly diagnosed until 2 years later.

I had a pCR to chemotherapy with only some DCIS remaining and my nose is still running from the Herceptin so here's hoping everything is gone.

But I almost didn't get it rechecked. I almost didn't make the appointment to begin with and I almost cancelled that second imaging appointment because I was tired and thought it was probably normal breast tissue like the radiologist said.

If I had not literally jump out of bed and caught the bus at the literal last minute, I think it would have been twice as big and ulcerated by the time it was discovered and I started treatment.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin)
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Sep 25, 2019 03:40AM Peregrinelady wrote:

I am not as young as most of you, but I, too, had an ultrasound that was “normal.” I thought that meant it was a fibroadenoma, since it was round and movable. Neither my pcp or radiologist at my small, rural hospital told me that I needed a biopsy or MRI. Another normal yearly mammo and it finally started hurting. 20 months after I found the lump and asked for it to be removed and given an ultrasound instead, I was diagnosed stage 2. I am saddened to see how often this happens, especially to young women. Thanks for starting this thread.
Dx 4/24/2015, IDC, Left, 2cm, Stage IIB, Grade 2, 1/2 nodes, ER+/PR+, HER2- Surgery 5/18/2015 Mastectomy: Left Hormonal Therapy 6/1/2015 Liquid tamoxifen (Soltamox) Surgery 4/18/2016 Mastectomy: Right; Prophylactic ovary removal; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 7/31/2016 Arimidex (anastrozole) Hormonal Therapy 7/19/2020 Femara (letrozole) Hormonal Therapy 3/3/2021 Arimidex (anastrozole)
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Sep 25, 2019 07:55AM Momchichi wrote:

I did not have my symptoms dismissed but a few years before my diagnosis, I asked my family dr if I needed a mammo before 40 because my cousin was diagnosed with stage 3 at age 37. She said no, didn’t increase my risk. Same dr the year before my diagnosis told me cancer isn’t painful when I asked about my breast tenderness. So not a misdiagnosis but I feel like I was lulled into a false sense of security that caused me to dismiss my armpit pain for a few months before seeking help. Luckily the new family dr got me in for imaging the same day.

Dx at 38, TN in breast, HER2 + in some nodes. TN met to L2 at 40. Dr thinks I was never HER2+ & it was a false + from neoadjuvant chemo - whaaat??? Dx 7/19/2017, DCIS/IDC, Right, 4cm, Stage IIIC, Grade 3, 16/19 nodes, ER-/PR-, HER2+ (FISH) Chemotherapy 8/9/2017 AC Chemotherapy 9/27/2017 Taxol (paclitaxel) Surgery 1/18/2018 Lumpectomy: Right; Lymph node removal: Underarm/Axillary Targeted Therapy 2/15/2018 Herceptin (trastuzumab) Targeted Therapy 2/16/2018 Perjeta (pertuzumab) Chemotherapy 2/16/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 6/23/2018 Whole-breast: Breast, Lymph nodes, Chest wall Dx 6/19/2019, Stage IV, metastasized to bone, Grade 3, ER-/PR-, HER2- (IHC) Radiation Therapy 8/11/2019 External: Bone Chemotherapy 9/3/2019 Xeloda (capecitabine) Dx 11/22/2019, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 12/6/2019 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 1/6/2020 Abraxane (albumin-bound or nab-paclitaxel) Immunotherapy 1/9/2020 Tecentriq (atezolizumab) Targeted Therapy Trodelvy (sacituzumab govitecan-hziy)
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Sep 25, 2019 10:15AM trinigirl50 wrote:

I have had mammograms and US scans since I turned 40. I was told I had dense breasts and had to do them yearly. In 2013 I felt a small lump. I went straight to my doctor who said it was moveable and probably not BC but sent me for mammogram and ultra sound scan. The technician who scanned me 'scared' me by saying it didn't look like BC but you only ever know with a biopsy. I dismissed her as 'scaremongering' especially when my Dr said I was fine.

In June 2014, I decided I wanted to try HRT because I had no energy and sex was becoming painful. My gynaecologist did breast exam but then sent me to breast specialist for an all clear before she would prescribe. Breast specialist did another mammo and US, said he saw something that looked like a fibroid (in keeping with all my previous scans - I had 3 small 'fibroids'), but I could take the HRT and we would do a biopsy in 3 months just in case. I came back for the biopsy September 2014 but was scanned and mammo'd again instead. Dr said nothing had changed since last scan so no need to biopsy. This was despite the fact that my breasts had gone up by 2 sizes. The change in breast size did not concern me, as my breasts always went up a size when I took the pill (birth control pill).

Roll on to end of December 2014, I notice my left breast is really bigger than my right (it was always slightly bigger). I also notice my nipple has flattened. I went straight to gynaecologist in Jan 2015, as I was most comfortable with that Dr. I nearly walked out of the appointment because I waited over an hour to see her and my sister was waiting for me in the car. Luckily my sister said that she had already been there for ages, so I might as well stay. My gynaecologist didn't even bother to do my usual exam. She phoned the breast specialist and made an appointment for me the next day. She told me to stop the HRT pill immediately.

Breast specialist was ill, so I saw his assistant (also a Dr). She did scan, but said she couldn't see anything. I asked her if she couldn't see anything, then what was causing my left breast to be so huge and hard and the nipple to be flat. No answer. Did another mammogram and US, negative for anything.

February 2014 the breast specialist calls me in, he is recovered from illness and wants to see me. (I think my gynaecologist called him). I go in and he admits the breast looks odd although he doesn't see anything on the US. He suggests I come back and biopsy. I ask if I can do it right then. He agrees and after a short time, I get a biopsy done. Two days later he calls me in with results. BC. Four days later (due to my demands) I have a double mastectomy. Three weeks later I get the pathology back and its ILC (hence no one seeing a large mass) and it's in 20 nodes.

I am pretty sure I had LCIS (because I could never get milk out of my left breast properly when I was breastfeeding), and it developed into ILC in 2013 (when I felt the lump). I literally fed the tumour with the HRT. I am typical of HRT caused breast cancer: ILC pr-.

I can't say that the Drs did not do all the 'right things', they certainly did. But I am outraged that a breast cancer specialist wouldn't know that ILC doesn't show up as a hard lump and should have biopsied me the first time. I would still have had BC but maybe not 20 positive nodes. And if someone ANYONE (all that literature about getting a mammogram) had ever told me that mammograms are not infallible (I thought there were 100%), I would not have dismissed the Ultrasound technician and I would have had a biopsy in 2013.



trinigirl50 Dx 3/7/2015, ILC, Left, 6cm+, Stage IIIC, Grade 2, 20/24 nodes, ER+/PR-, HER2- Surgery 3/7/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 4/13/2015 AC + T (Taxotere) Hormonal Therapy 9/14/2015 Arimidex (anastrozole), Femara (letrozole) Radiation Therapy 10/1/2015 Whole-breast: Breast, Lymph nodes
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Sep 25, 2019 11:27AM - edited Sep 27, 2019 06:28PM by WC3

trinigirl50:

After my first round of imaging came back negative, I was started on birth control pills for health issues. I'm sure my cancer was already IDC at that point because it was a new lump in my upper outer quadrant, where I had no other lumps, and felt like a hard little pea. I was only on them for about 3 months before I was switched to natural progesterone only due to a serendipitous encounter with a pharmacist who thought the estradiol in the pill was counter productive to treating my problems (she was right).

I'm not sure if the progesterone fueled or slowed the cancer; it's thought that progesterone can slow hormone positive, HER2 negative breast cancer by altering the estrogen receptors, rendering them non functional, but my cancer was HER2 positive as well and there are preliminary studies that indicate progesterone can cause HER2 positive breast cancer to proliferate/spread. But throwing both estrogen and progesterone at it most likely would have been worse. I don't regret taking the progesterone because it was the most conservative treatment option at the time to my known health issues at the time, my issue could not go untreated, and it worked very well for the band aid it was, but I sure wish that little lump had been properly diagnosed and cut out first. It would have been such a simple procedure.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin)
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Oct 19, 2019 10:51PM Mominator wrote:

Sadly, late diagnosis is very common.

My grandmother had a lump in her belly. Her doctor told her not to worry about it since she was in the middle of planning my mother’s wedding.

After the wedding, they checked on the lump. By that time, my grandmother had stage IV ovarian cancer. Her first grandchild was born a few months before she died.


The gentlemen with breast cancer frequently have late diagnosis, also many of the under 35 ladies.

Mominator, BRCA2+, STK-11 VUS. My Mom dx DCIS age 62, ILC stage IIIA age 79; Mom passed 2/28/18. My Grandmother died of ovarian cancer age 48. Friend to Lori M, passed 5/25/16. Surgery 11/10/2015 Prophylactic mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/18/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/29/2017 Reconstruction (left): Silicone implant

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