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Topic: getting pushback from oncologist re. genomic testing

Forum: High Risk of Recurrence or Second Breast Cancer — Managing high recurrence risk of developing a second breast cancer.

Posted on: Jul 1, 2020 10:48AM

Brooklyn1234 wrote:

Hi all,

I am coming to the end of treatment for a local stage 1 recurrence of my decade-old cancer. I'd really like to do what I can to understand the different pathways my cancer uses to feed itself and grow. I'm excited by the possibilities of genomic testing to help prevent a recurrence using off-label drugs and supplements. However, every time I try to talk to my oncologist about it, I get frustration and an attitude. In her opinion, I had a local recurrence of an early stage cancer; my tumour had a complete response with chemo and Herceptin, and, in her words, "you are cured -- now go live your life." (This is basically what I was told the first time around -- "your cancer is never coming back," but here I am.)

It's not that she isn't interested in genomic testing and custom treatments. She is trying hard to bring this testing to the hospital, but only for stage IV patients. Of course I understand that mets patients should be first in line. But if I save up to pay for the testing myself, she doesn't want to help me interpret the results because she thinks I'm wasting her time.

I guess I'm posting this in part to vent, but also to ask whether others have faced this same pushback from their oncologists in trying to prevent a recurrence? If so, has anything worked to change their minds, or have you been able to get high-tech testing on your own and use it? Thanks!

Dx 11/1/2009, 1cm, Stage I, 0/9 nodes, ER-/PR+, HER2+ Dx 9/2019, IDC, Left, 1cm, ER-, HER2+ Chemotherapy Taxol (paclitaxel)
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Jul 1, 2020 02:57PM Salamandra wrote:

When people write genomic testing, I thought they meant oncotype. But is that not what you mean?

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Jul 1, 2020 03:57PM Brooklyn1234 wrote:

Oncotyping is a kind of genomic testing, but I think it's only used for people with hormone positive cancer to determine if they can skip chemo. I'm her2+ and never used it because skipping chemo is not an option for me. I'm thinking of companies like CARIS and Foundation Medicine that tell you more broadly about the characteristics of your cancer.

Dx 11/1/2009, 1cm, Stage I, 0/9 nodes, ER-/PR+, HER2+ Dx 9/2019, IDC, Left, 1cm, ER-, HER2+ Chemotherapy Taxol (paclitaxel)
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Jul 1, 2020 03:59PM SpecialK wrote:

Are you talking about tests like Guardant 360 and Foundation One?

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Jul 2, 2020 01:02AM mtspacekace wrote:

Hello, I’m very very new to this not so fun game... Just diagnosed with HER2+ at 38 years old. I just got my port put in and start chemo in 5 days. If it’s any help, I’m not sure...but it was suggested by my oncologist to get genetic testing done...I met with a genetic counselor, and sent spit samples into Myriad so they can look for cancer causing genes. They said since I am so young, they want to see if they can find a reason I got this type of cancer at a young age...when there is absolutely no family history. If there is a chance I do have something that could cause cancer to return, I can look at getting a double mastectomy...and doing more screenings in the future after I’ve beat this the first time around... Is that what you are talking about? Maybe seek a genetic counselor? I’m very lucky I guess to have a pretty amazing clinic with a cancer center that is one stop shopping, they set me up with appointments with absolutely everyone before this process began.

Dx 6/3/2020, IDC, Left, 2cm, Stage IIA, ER-/PR-, HER2+ (FISH) Dx 6/3/2020, IDC, Left, 2cm, ER-/PR-, HER2+ (IHC) Targeted Therapy 7/7/2020 Perjeta (pertuzumab) Chemotherapy 7/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/7/2020 Herceptin (trastuzumab)
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Jul 2, 2020 09:54AM Brooklyn1234 wrote:

Sorry to hear about your diagnosis. I was 39 my first time being diagnosed. I know it's confusing but you're getting genetic testing, whereas I'm talking about genomic testing. Genetic is to find the risk factors that you carry, such as the BRCA mutation. Genomic is to understand more about the makeup of your tumour.

Good luck with the start of chemo. I know it's a nerve-racking time, but I find it helps just to get started!

Dx 11/1/2009, 1cm, Stage I, 0/9 nodes, ER-/PR+, HER2+ Dx 9/2019, IDC, Left, 1cm, ER-, HER2+ Chemotherapy Taxol (paclitaxel)
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Jul 2, 2020 09:55AM Brooklyn1234 wrote:

Yes, although I hadn't heard of Guardant, so thanks for letting me know about them.

Dx 11/1/2009, 1cm, Stage I, 0/9 nodes, ER-/PR+, HER2+ Dx 9/2019, IDC, Left, 1cm, ER-, HER2+ Chemotherapy Taxol (paclitaxel)
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Jul 2, 2020 10:43AM SpecialK wrote:

mtspacekace - just wanted to expand on genetic versus genomic, breast cancer diagnosis and testing has a steep learning curve! Genetic testing determines whether things in your genetic makeup (mutations) cause an increased risk for cancer, and which kinds. Genomic testing is done on the tumor material itself after a diagnosis to determine whether, and which, treatments are likely to be beneficial or effective. There are different kinds of genomic testing that are available depending on the hormonal and Her2 status, and/or stage. You may have seen reference to the genomic testing OncotypeDx, which is for early stage ER+/Her2- patients to help determine whether chemo may be beneficial. The genomic test Mammaprint has a more broad application and is less restrictive on the hormonal and Her2 status, and it is also used to determine the benefit of chemo by assessing aggressiveness of the tumor fir early stagers. Genomic tests like Guardant, Caris, and Foundation One are used for advanced stage patients who are trying to determine which chemo/meds will be effective for them. Advanced stage patients are likely to have tried a number of treatments already and require more specific information about effectiveness to make an informed decision about further treatment. Genetic testing is often done at diagnosis, and usually prior to surgery, because it helps determine risk and may inform your surgeon to make a specific type of surgical recommendation, as well as recommend additional screening or treatment options, or referrals to additional specialty physicians. An example would be bi-lateral mastectomy rather than lumpectomy, and removal of ovaries if one is found to be BRCA positive. These surgeries would minimize future risk based on genetic information. Another example might be mutations that may increase colon cancer risk and prompt referral to a gastroenterologist and initiate colonoscopy earlier than the standard.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Jul 2, 2020 11:51AM MinusTwo wrote:

Great explanation Special K. I learned a lot. Thanks.

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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Jul 2, 2020 08:33PM mtspacekace wrote:

thank you specialk! There is so much to learn.

Dx 6/3/2020, IDC, Left, 2cm, Stage IIA, ER-/PR-, HER2+ (FISH) Dx 6/3/2020, IDC, Left, 2cm, ER-/PR-, HER2+ (IHC) Targeted Therapy 7/7/2020 Perjeta (pertuzumab) Chemotherapy 7/7/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 7/7/2020 Herceptin (trastuzumab)
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Jul 4, 2020 03:17AM - edited Jul 4, 2020 03:21AM by ShetlandPony

Brooklyn, since you mention pathways, I assume you are thinking of genomic testing of the tumor.

When I read the NCCN Guidelines for additional targeted therapies and associated biomarker testing for recurrent or stage iv (M1) disease, I see only four tumor mutations/characteristics on the recommended list: PIK3CA, PD-L1, NTRK, MSI-H/dmmr. This must be because the committee believed the targeted therapies for these have strong evidence to recommend them. However, oncologists often test for more mutations and possible treatments using tests such as Foundation One and Guardant 360. As far as I could tell, there is no NCCN recommendation for using even limited genomic testing with local recurrence.

Since you have been treated successfully, genomic testing would have to be done with tissue from a biopsy or surgery before treatment. I don't think it is a matter of who is first in line, but that such testing is used for patients with metastatic disease when they progress and the next treatment must be chosen. Even if you had tissue tested, the treatments the report suggests are not ones used or approved with early stage, recurrence or not. Your treatment was obvious, and you hit the cancer hard with chemo and herceptin. Did you have a different chemo this time? And did you resume herceptin after being off of it for some years? Did you and your onc discuss other Her2 directed therapies and the idea of using a different one this time? (I do not know if any other than herceptin are approved for local recurrence, but if not there might be a trial.)

Another thing to know is that when bc is metastatic, it often starts out with few mutations and gains more over time under the pressure of many different treatments. So even if you got the tissue tested, chances are the cancer had not gotten to the point where it would show most mutations, since you do not have metastatic disease. For example, the PIK3CA mutation recently found on my report was not there when I was first diagnosed stage iv, but occurred after years of treatment. MSI is associated with having lots of mutations, again something that typically happens later in the mbc natural history. I wonder if there is a clinical trial that looks at the genomic profile of locally recurrent tumors?

I am not a doctor but these are my thoughts on your question, and you can ask your onc to comment on them. I understand your idea. I think your oncologist should be more patient in explaining her answer to your sensible question.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD

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