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Topic: CYP-2D6 Tamoxifen

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Sep 22, 2019 12:48PM - edited Sep 22, 2019 02:48PM by RMC19

RMC19 wrote:

Has anyone gotten this test (CYP-2D6) to determine whether they are able to metabolize Tamoxifen? If so does anyone know if this test helps to determine those ILC Dx individuals that may respond to Tamoxifen versus those that will not? From what I am reading, certain individuals diagnosed with ILC do not respond well to (or are not helped by) Tamoxifen verses aromatase inhibitors and I didn't know If this test could help by any chance

Sorry if this is covered somewhere else, but I wasn't able to find it

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Sep 22, 2019 02:29PM ksusan wrote:

those labial are folks that will respond to to mocks Finn

^ I can get "Tamoxifen" from "to mocks Finn" but don't know what you were trying to say that's been turned into "those labial are folks." Would you clarify? Thanks.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 22, 2019 02:45PM RMC19 wrote:

Sorry, was Dictating and then mistakingly posted 2 times. Unfortunately the one with Editing is the one that got deleted of the two. Should be accurate now

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Sep 22, 2019 03:46PM - edited Sep 22, 2019 03:47PM by Spoonie77

I asked my first oncologist for this test for the same reason that you're stating. I later asked my second MO as well, neither one of them would order the test. There are some oncologists who do order the test apparently but I think this is rather a newish trend and most doctors do not have a standard of care or recommendations for that yet.

"Spoonie" who entered BC World @ 41. DXd w/MS & Thyroid Cancer @42. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamox = 0 QOL. Plan B: OS/AI = Rare allergy to OS meds. Plan C: Only option left,  Diet & Exercise. PS: Not a dr, just a Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 8/29/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Radiation Therapy 9/30/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/29/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/1/2019 Zoladex (goserelin)
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Sep 22, 2019 07:14PM Rah2464 wrote:

My MO ordered this test for me earlier this year. She used the OneOme testing group because she trusted their protocols better. I turned out to be an intermediate metabolizer. What we do not know for sure because the studies are all over the place, is whether that is truly an indicator of how well I will do on Tamoxifen. My MO took a logical approach. She said don't miss a dose, don't reduce the dose, and consult her before taking another medication or supplement to make sure they don't interfere with my processing Tamoxifen. I will probably be on the medication another year, then she will most likely switch me to an AI. What blows my mind is that we are all dependent upon a drug where we have no true indicator of efficacy. I still wonder why blood plasma concentration levels of tamoxifen metabolites are not measured after you reach full dosing levels.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/27/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 23, 2019 07:51AM - edited Sep 23, 2019 07:55AM by ShetlandPony

As I understand it, how you metabolize drugs via the CYP2D6 enzyme is a genetic characteristic of you. And whether a particular ILC will be de novo resistant to tamoxifen is a genomic characteristic of the cancer cells. So it's two separate issues. Both are worth pursuing in my opinion.

As for doctors refusing to order the test, bleep em. Just order the stupid test. It’s not your life on he line, Doc.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Sep 23, 2019 11:06AM Spoonie77 wrote:

my sentiments exactly shetlandpony!

"Spoonie" who entered BC World @ 41. DXd w/MS & Thyroid Cancer @42. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamox = 0 QOL. Plan B: OS/AI = Rare allergy to OS meds. Plan C: Only option left,  Diet & Exercise. PS: Not a dr, just a Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 8/29/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Radiation Therapy 9/30/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/29/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/1/2019 Zoladex (goserelin)
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Sep 23, 2019 11:10AM Lisey wrote:

I was tested by Kailos Genetics... It showed I'm an Ultra Rapid Metabolizer, so will do well on metabolizing Tamox. I highly suggest Kailos Complete RX... we found out we have some alleles that have a huge effect on BC.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 23, 2019 04:03PM j414 wrote:

I took the test as part of a clinical trial in 2009. My results showed that I was a slow metabolizer, so my oncologist gave me 30mg instead of the usual 20mg. I also took 30mg of Tamoxifen for 10 years. The higher dosage resulted in a couple of issues - thickened endometrium, frequent ovarian cysts and PMS that would occasionally bring me to tears. But overall, the side effects were manageable.

Dx 4/2009, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Sep 23, 2019 05:02PM Hopeful82014 wrote:

Rah, in response to your comment "What blows my mind is that we are all dependent upon a drug where we have no true indicator of efficacy. I still wonder why blood plasma concentration levels of tamoxifen metabolites are not measured after you reach full dosing levels" it's not quite the same but when I was dx. five years ago I did neoadjuvant femara rather than neoadjuvant chemo. My tumor was re-biopsied after one month to check for response (which as very strong) and I then stayed on it until surgery 7 months later. I didn't have pCR but a great deal of the tumor and nodal metastasis was dead and the growth rate of the remainder was only 1%.

I have found that information extremely helpful the past five years and, while I realize that any cancer can develop resistance, I do at least have a strong indication that endocrine therapy has been/is valuable for me.

When I started on that protocol I learned that it's in common usage elsewhere in the world but nowhere near as frequently used in the US. At the time, I figured that in five years it would be widespread here as well and I'm really puzzled by the fact that it's still the exception rather than the rule. I'm really sorry that more women don't have the opportunity to gain similar insight into the efficacy of their treatment. I suspect it all feels pretty iffy and nebulous without that confirmation.

Dx IDC
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Sep 23, 2019 06:40PM Rah2464 wrote:

Hopeful I am very glad that you had such a strong response to femara and were able to quantitatively identify what worked for you. And yes, these hormonal treatments feel in your words, pretty iffy without any kind of testing to confirm they are effective.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/27/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 28, 2019 05:39AM wanderweg wrote:

If your MO won’t order the test, is there a way to do it on your own?

weakly ER+, TNBC on oncotype Dx 5/10/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 6/10/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/6/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 8/31/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 28, 2019 08:35AM Lisey wrote:

Hi All, just as an FYI, my oncologist is more than happy to test my endoxifen levels to see if I'm at efficacy stage for Tamoxifen. If you want to see how your endoxifen is, just request the blood test, with Kaiser, it cost nothing extra. It's a simple test. Tamoxifen changes to Endoxifen when it's metabolized, so that is the sure way to know you are getting enough into your system.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 28, 2019 11:44AM wanderweg wrote:

But what if your oncologist won't? Mine feels it's not a good test, but I'm asking if there is a way I can get it done on my own, out of my own pocket?

weakly ER+, TNBC on oncotype Dx 5/10/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 6/10/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/6/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 8/31/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 28, 2019 02:52PM Rah2464 wrote:

Lisey thanks for the info glad you were able to get the blood test to check for endoxifen levels. I will have to ask my MO if she will agree to, especially since I am not a great metabolizer.

Wanderweg, I am not sure of options if your MO won't request the test. Why do they feel the endoxifen level isn't a good test? I do know there is confusion on whether the genomic testing is applicable

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/27/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 28, 2019 08:27PM - edited Sep 28, 2019 08:28PM by Lisey

1) I got my genetics tested without asking any doctor. I simply went to Kailos, purchased the Complete RX package, told them who my primary care doctor was and paid the cost on my CC. Then, I called my primary's office and INFORMED them that I'm having this test done, out of pocket and they need to sign the form for it. You don't ask.. you tell. This is your body and your money. They will go along with it, even if they think it's stupid as long as they aren't being asked to submit to insurance.

2) on the Endoxifen, yes, there are labs in the nation that will test independently. Just do a google search for Endoxifen blood test and call the lab directly.

I do not understand why ladies don't just take the bulls by the horn and do the work themselves. If I waited for another human to decide I deserved something, I'd still be waiting.. or dead (since I had to demand to get an US because the mammo didn't see my lump and no one believed me). Be active in your care, not passive. Do what is best for you and TELL your docs what you need, don't simply ask and wait for them to grant things like you are a child and they are a parent.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 29, 2019 10:54AM wanderweg wrote:

Jesus, Lisey, that's a little harsh and insulting. Exploring options and discussing (rather than demanding) things with a physician whose opinions and expertise you trust doesn't mean you are acting like a passive child. There are many ways to have agency in your own treatment, not just one way.

weakly ER+, TNBC on oncotype Dx 5/10/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 6/10/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/6/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 8/31/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 29, 2019 05:10PM - edited Sep 29, 2019 05:11PM by ShetlandPony

Perhaps if the testing company simply requires a physician's order, your PCP or NP could sign?

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn . Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+Her2- grade 2, mets to breast , liver. Taxol NEAD. 2015,2016 Ibrance+letrozole. 2017 Faslodex+Afnitor; Xeloda. 2018,2019 Xeloda NEAD
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Sep 30, 2019 08:02AM Lisey wrote:

"But what if your oncologist won't?

That was the question right? Well if they won't GO AROUND THEM. Simple. Doable. be your own advocate and find a work around. And honestly, none of these tests require a physician to initiate. The Medical Pathways Kailos test does ask for a doctor (any doctor will do) who they will get sign off from. And you just pick a doctor and inform them what you are doing. Tests are way different than treatment. Tests don't change your body or affect your care.

And yes, exploring options and discussing is great, but if they 'WONT' (which sure doesnt' sound like a discussion to me) and you want it... then action will be up to you and it's your choice to be a force of nature and make things happen..

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 30, 2019 05:03PM gb2115 wrote:

Hey Lisey...why wouldn't your oncologist order the genetic testing? You mean like for BRCA? I thought that was pretty standard??

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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Sep 30, 2019 05:11PM wanderweg wrote:

Lisey, again - you are way off base. I was asking a simple question about whether anyone here knew if patients could direct order a test. I wasn't even saying necessarily that I wanted to do that. I have a stellar team, they are very responsive to discussions and questions, and I prefer a collaborative partnership with them. What I sure as hell don't need is someone who doesn't know me at all trying to offer unsolicited advice about turning myself into a "force of nature."

weakly ER+, TNBC on oncotype Dx 5/10/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 6/10/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/6/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 8/31/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 30, 2019 10:15PM AliceBastable wrote:

A lot of people are on insurance plans that are restrictive about additional testing and require referrals for EVERYTHING. Many of those plans also require the patient to stay within a network. And not everyone has the financial wherewithal to pay for extra testing out of pocket. To imply that these people just aren't being proactive enough is rather insensitive.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Oct 1, 2019 08:28AM - edited Oct 1, 2019 08:43AM by Lisey

QB2115 and Alice, this is not standard genetic testing. This is pharmacogenetic testing, which is not covered by insurance anyway. It only costs $300 and you don't need an oncologist to order the test, you can do it yourself. Insurance has no stake in this and no one can stop you from ordering the test straight from the lab. also, you can do genetic testing like BRCA on your own too ladies.. no insurance, no permission from Doctors.

Wander, I was responding to this question. "WHAT IF YOUR ONCOLOGIST WONT"

That question is a blanket WONT... thus you simply go around them and order the test yourself. If you are now saying that is not at all what your oncologist said, then I'm not sure why you'd ask the question. The term "Won't" doesn't imply discussion or conversation it is a blanket NO. My whole point is if a doctor gives you a NO, when you want to do something that cannot harm you.. go do it yourself, pay out of pocket (it's cheap) and bypass your doctor.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 1, 2019 09:20AM wanderweg wrote:

Lisey, again, my question wasn’t how to order my oncologist to sign a form but about non-signature options. If you don’t know if that’s an option, you can say that. Or if you know it is not an option, you can say that instead. Or if you know that it IS an option, you can say which website doesn’t ask for a doctor’s signature. I just wanted the resource for my information. I may or may not ever feel like that’s something I want to pursue. What I am NOT asking is your opinion about how to manage my care or what sort of relationship I should have with my oncologist

weakly ER+, TNBC on oncotype Dx 5/10/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 6/10/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/6/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 8/31/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 1, 2019 09:41AM - edited Oct 1, 2019 01:50PM by mac5

This Post was deleted by mac5.
Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/5/2019, ILC, Right, 6cm+, Stage IIIB, Grade 2, ER+/PR+, HER2- (FISH)
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Oct 1, 2019 10:13AM Lisey wrote:

Hi Mac5, you may want to post your question as a new thread, as this is only about the CYP2d6 test. :)

Ok Wander, I feel I did answer all those items, but if you choose to disregard my answers then it's up to you. Bottom line is this:

1) You can order the Tamoxifen test directly from Kailos Genetics or another certified lab. I personally recommend the Complete RX test as it does more than just tamoxifen and is super beneficial. Insurance is not billed and has no knowledge of any of this.

2) You pay with a credit card and tell them your doctor's contact info - which doesn't have to be your oncologist, it can be any doctor, even a holistic one.

3) you then inform that doctor you are ordering a test, paid out of pocket and just need them to sign for it. You don't ask permission, you inform them that is what you want and since it's not being billed to insurance, they need to do it.

4) You then decide if you want to request an endoxifen test from your doctor.. and if your doctor 'WONT', you then decide to bypass them and do the testing yourself through numerous labs across the country that test for Endoxifen.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 1, 2019 10:30AM wanderweg wrote:

Lisey, while I do appreciate that information, my question was about testing without a doctor’s involvement at all. It was really a straightforward question. But your answer sounds like a roundabout way of saying that you don’t know a way to do that. Beyond that, I don’t really have another question.

weakly ER+, TNBC on oncotype Dx 5/10/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 6/10/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/6/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 8/31/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 1, 2019 10:54AM Lisey wrote:

Correct Wander, you do need 'a' doctor to sign an acknowledgement that they agree to receive the results - but you don't need a doctor to order the test. It does NOT have to be your oncologist though, it can be any doctor, including your GCP, your holistic doc. Honestly, all docs will sign for it if you push them - given it costs them/insurance nothing and is simply an extra test you want, so this just doesn't seem like an issue at all.

Oncotype =20, ER 95%, PR 5%, ki67= 30%, Mammoprint = Low, Blueprint = Luminal A!!!! TEs= Iron Bra of Death - not worth all the complications for foobs that I'll never feel. Flat and fealess now. Dx 5/11/2016, IDC, Right, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Surgery 6/1/2016 Lymph node removal: Sentinel Surgery 6/14/2016 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/6/2016 Mastectomy: Left, Right Hormonal Therapy 7/14/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 1, 2019 12:58PM wanderweg wrote:

Yes, yes I got it, Lisey. I understand what you’ve explained, just wanted that one specific piece of information. I’ll decide for myself if I ever want to pursue that

weakly ER+, TNBC on oncotype Dx 5/10/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 6/10/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/6/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 8/31/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 1, 2019 03:50PM Rah2464 wrote:

Wanderweg my MO specifically cautioned me about genomic testing related to accuracy of their testing protocols. She wanted me to use a very specific provider that she felt had more stringent processing requirements. It is very easy to get cross contamination if lab protocols are not followed, potentially giving someone a less accurate result. Interestingly enough, my GP, who read over a copy of my test results, did not add them to her file.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/27/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 1, 2019 04:19PM wanderweg wrote:

Rah - My MO said he doesn't use the test because there is not yet a good standard for validity of the testing. He said he wouldn't make a decision about treatment based on the results, which is why I decided I wouldn't pursue it at this time. In the future, I might.

weakly ER+, TNBC on oncotype Dx 5/10/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR-, HER2- Surgery 6/10/2018 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 8/6/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 8/31/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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