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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 or high 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 12/2/2018 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.

Diagnosed at 38. Dog mom. Wife. Rancher turned warrior, currently busy kicking cancers ass. Dx 6/3/2020, IDC, Left, 2cm, Grade 3, 0/1 nodes, 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) Surgery 12/16/2020 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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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.

Diagnosed at 38. Dog mom. Wife. Rancher turned warrior, currently busy kicking cancers ass. Dx 6/3/2020, IDC, Left, 2cm, Grade 3, 0/1 nodes, 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) Surgery 12/16/2020 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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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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Jan 22, 2021 07:47PM BlueGirlRedState wrote:

SpecialK - thank you for the explanation. I will post my Qs/fears on a few forums because I'm not sure where to post. My oncologist is out all week, but I want to be ready with good questions. Has anyone else done a genetic panel like this, checking for over 600 markers? Was it helpful? She wants me to do a genetic profile of of over 600 markers to help determine the next step. Insurance is unlikely to pay, they already denied one 1 1\2 years ago specific to BC (over 20 markers looked for,nothing found), saying it was not relevant to diagnosis or treatment. The Lab says they will work with me/ my insurance if denied, and the maximum if denied would be $500. If the results would truly be helpful, I guess it is worth it, but if is not helpful, it is a lot of money wasted and more discouragement. This is BC #3 for me,and it appears to be spreading into the skin. She thinks each cancer diagnosis is a "new" cancer rather than recurrence because of time interval or location, but admits there is no real way of knowing. She has ordered a PET to see if it picks up anything regular CTs have missed. So far CTs have not found anything in bones or organs. She thinks the treatment for BC#1 and BC#2 were successful, but I am having serious doubts. She thinks the Ibrance/Arimidex for BC#3 is no longer working, and is thinking chemo. What should I ask? I did chemo in 2016 for BC#2. If I have a genetic flaw that keeps making cancer, should I just throw in the towel? Or if the flaw is identified, would it point to a targeted treatment? Yes, I am discouraged. But what should I ask? I used to scour the internet to try and get a better undertanding and write a huge list of questions, but now I just wanat to scream.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

6/2019 ER+ R-axilla. Symptom was a very swollen Right arm. Ibrance and Arimidex. 12/2020, "rash" on right chest wall and fibrotic tissue between neck and shoulder. Punch biopsy showed BC in skin. I had noticed decrease range of motion prior but attributed it to old injury, not working out at gym because of covid, geting older and older.


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Jan 22, 2021 07:57PM - edited Jan 22, 2021 07:58PM by moth

BlueGirlRedState, what brand of testing is your oncologist recommending? Was it maybe Foundation One or Caris?

Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/10/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone, Grade 3
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Jan 22, 2021 08:02PM BlueGirlRedState wrote:

moth - the Lab is CARIS, they are sending me a brochure listing markers/mutations checked, but I don't think it incudes the implications of any of the markers

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Jan 22, 2021 08:13PM moth wrote:

ok so Caris is genomic testing of the tumor, not you. It can identify some clinically actionable mutations. For example PI3K mutation might mean that Piqray would work for you. BRCA can be germline (*your* DNA) or somatic (acquired by a cell/tissue). So if someone's tumor has BRCA, even if the person is not BRCA+, they might benefit from a PARP inhibitor. Immunotherapy like keytruda can also be used if the genomic testing identifies "tumor mutation burden high" which Caris will also tell you.


Initial dx at 50. Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/10/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/10/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone, Grade 3
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Jan 22, 2021 10:53PM BevJen wrote:

BlueGirl Red State,

I think this is about the third place I've seen your same questions. I understand your anxiety, but you have gotten a lot of good information, especially in this thread.

If you are worried about cost, you should know that some of the companies that do the testing allow you to fill our a financial form online prior to doing the testing. I don't know if all of them do this, but Tempus does -- and if you are approved, and your insurance doesn't pay, you will only be liable for a small amount of $$ -- with Tempus, it's $100. And there are probably grants through Tempus, or Foundation One, or Caris that would cover the entire cost for you. You can look online, or ask your MO about this. And if Caris doesn't have this, you can ask your MO to use one of the other companies -- they are all very similar.

Good luck. And again, as I noted on one of the other threads, you should also think about getting another opinion.

Microwave Ablations of the Liver: 7/2019; 10/2020; 12/2020 Dx 11/2003, ILC, Left, Stage IIIC, 13/18 nodes, ER+/PR+, HER2- Dx 6/2006, ILC, Stage IV, metastasized to other, ER+, HER2- Dx 5/2019, ILC, Stage IV, metastasized to liver, ER+/PR+, HER2- Surgery 7/5/2019 Targeted Therapy 7/31/2019 Ibrance (palbociclib) Immunotherapy Radiation Therapy Surgery Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Chemotherapy TAC Hormonal Therapy Faslodex (fulvestrant) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal; Mastectomy; Reconstruction (left): Pedicled TRAM flap; Reconstruction (right): Pedicled TRAM flap Hormonal Therapy Femara (letrozole)
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Jan 24, 2021 08:48AM Brooklyn1234 wrote:

thanks so much for this reply, Shetland! So helpful. Yes, I am thinking of genomic testing and this information really helps me to put it in perspective.

I should mention that I am part of the Jane McLelland Facebook group that is exploring off label metabolic approaches to cancer treatment, so I wouldn’t be using the information to find a currently approved treatment. I guess that explains my oncologist’s disinterest! Information that she would consider actionable is very different from the information that I might want to act on using supplements and off label drugs.

I do feel that metabolic approaches have been a bit ignored in the mainstream, i.e. what feeds the cancer and how can we starve the tumour by denying it the substances that fuel its growth? There is a spin off Facebook group that just looks at metabolic pathways that feed her2+ positive cancer, and members look for research on various substances that could shut down those pathways.

Not sure if you are familiar with Jane, but her approach is to simultaneously shut down all pathways that could feed a particular cancer so that the tumour doesn’t switch to another one if only one is blocked. I don’t know this, but it’s possible that typical explorations of metabolic approaches haven’t taken this holistic approach in the past, i.e. a patient will be given Metformin withou consideration that glucose is just one pathway their cancer uses. Then when that fails for most people, Metformin is cast aside.

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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