Join Us

We are 224,253 members in 83 forums discussing 163,465 topics.

Help with Abbreviations

Topic: Oncotype DX gray area for woman under 50

Forum: "Middle Age" 40-60(ish) Years Old With Breast Cancer —

Meet others in this age-range who share similar life issues.

Posted on: Jul 18, 2018 11:35AM

JNKK wrote:

Hi everyone, I am trying to decide if I should go for chemo or not. I scored a 24 on the oncotype test. My chance of recurrence is 15% with tamoxifen, but if I do chemo and tamoxifen, it will drop down to 7.5%. Truth to be told, I am scare of chemo. All the short term and long term side effects scare me!! So I would like to get your opinion. I am leaning toward to get chemotherapy, but would still like to hear your experience with chemo or skipping chemo treatment. Thank you in advance.

Dx 5/4/2018, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/11/2018 Whole-breast: Breast Chemotherapy 9/3/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Page 1 of 2 (51 results)

Posts 1 - 30 (51 total)

Log in to post a reply

Jul 18, 2018 11:56AM Scrafgal wrote:

I was high oncotype score, so I won't try to give you advice. Chemo was of great benefit to me, based on the data. However, you should add your diagnostic info so that others can give advice, considering your diagnosis. For example, what stage and grade was your cancer? Were you node negative or positive? These are issues that could matter prognostically, and whether you might want to opt for chemo or not.

Dx 12/2016, IDC, Right, 4cm, Stage IIA, Grade 3, 0/7 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Mastectomy: Right; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy 3/22/2017 Taxol (paclitaxel) Chemotherapy 6/15/2017 FAC Hormonal Therapy 9/25/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 10/13/2017 Reconstruction (right): Fat grafting, Silicone implant Surgery 5/9/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting Surgery 10/16/2018 Reconstruction (right): Nipple tattoo Surgery 5/9/2019 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy 7/23/2019 Arimidex (anastrozole) Surgery 9/6/2019 Reconstruction (right): Nipple tattoo
Log in to post a reply

Jul 18, 2018 12:00PM OCDAmy wrote:

I had four rounds of TC. It was totally doable and I had very few side effects. I worked during chemo only taking off the day of on Friday and Monday. I was never sick but did get a UTI and was hospitized for precaution for a few days.

Dx 2/2017, IDC, Left, 4cm, Stage IIB, Grade 2, 2/13 nodes, ER+/PR+, HER2- Surgery 11/14/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery Lymph node removal; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Arimidex (anastrozole) Surgery Reconstruction (left): DIEP flap Radiation Therapy Whole-breast
Log in to post a reply

Jul 18, 2018 12:11PM JNKK wrote:

I thought my DX is shown on the thread. I have IDC. Stage 1, phase 1, 1.2 cm tumor. Had lumpectomy on the left breast. Clear margin, no nodes involved. Currently undergoing radiation treatment. ER and PR + and HER2-

Dx 5/4/2018, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/11/2018 Whole-breast: Breast Chemotherapy 9/3/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Jul 18, 2018 12:25PM Moderators wrote:

JNKK -- in order to have your diagnosis show as part of your signature, you'll need to mark it from Private to Public in your Setttings. Let us know if you need any help doing so!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
Log in to post a reply

Jul 18, 2018 12:47PM maiyen wrote:

JNKK, I am trying to make this same decision myself so I know what you are going through. My score was 17 which is still in that grey area for women under 50, so it's been a tough one for me to figure out. Of course I'm not getting a gut feeling either.

Is your MO recommending chemo for you?

Log in to post a reply

Jul 18, 2018 01:33PM ChelseaSculler wrote:

JNKK, I got a 22 at age 49. Talk about grey... I decided against chemo. I actually haven't had an in-depth conversation with my MO about it since TAILORx came out—we played phone tag the day after and I made the decision quickly in order to start radiation within 8 weeks of my surgery. But his message supported my decision as did another MO. I second-guess a little, but most of the time I'm pretty comfortable with the decision even though it feels like I have less flexibility to screw around with the Tamoxifin now...

DX 49.5 Dx 3/21/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 4/9/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 6/7/2018 Whole-breast: Breast Hormonal Therapy 8/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jul 18, 2018 01:50PM - edited Jul 18, 2018 02:36PM by ShetlandPony

This is a situation where getting some expert second opinions, preferably from an NCCN center, could really help, especially as we are taking a brand new study into account. Only you can decide what is right for you, but you deserve to hear from oncologists who are up on the latest data and have the training and experience to offer good advice. Don't put up with, "It's up to you" and no advice. Make sure you get all the information about what the test results mean for you, and details of the particular chemo options. Consider whether you have other health issues that could make chemo riskier for you vs. being very healthy and able to deal with it well. And what side effects could happen and what they can do about them if they happen. I'm sorry you have to make this decision. Both choices are yucky.

JNKK and maiyen, please forgive me; I am going to be blunt. Yes, chemo is scary, but stage iv is scarier and you still end up on chemo. How strongly are your oncologists recommending chemo for you? Have you asked your oncologist what chemo she/he would prescribe and how many cycles? You might be able to negotiate for an easier chemo with a low risk of long-term side effects. They are not all the same. In the cancer treatment game, it's always a weighing of risk vs. benefit. You decide what that means to you. Which decision will cause you less worry, and less regret if the cancer should return? Are there any details about your case that would nudge the decision one way or the other?

Nobody should make a decision based on one person's story. That's why they do studies with large numbers of patients. But since you asked for experiences, I'll tell you that back in 2011, when I was premenopausal early stage, my Oncotype said no chemo; but based on this new study, it would have said yes. Just barely. No way to know what would have happened if I had been given chemo, and there were other factors that could have come into play. Regrettably, there is no crystal ball that shows the future. But if I could go back in time, knowing what I I know now and if we had the TAILORx results, I would do the chemo.

As for stage, that does not matter as much as the biology of the particular cancer. In the past, oncologists relied on stage a lot, but now we have tumor genomic testing, such as Oncotype, available to us. Biology trumps stage. A small tumor can have aggressive characteristics, or not.


https://www.genomeweb.com/molecular-diagnostics/fe...

"Women under 50 also present a more complex picture in the newly reported TAILORx results. Unlike older women who all had negligible added benefit from chemo up to a risk score cutoff point of 25, researchers saw in an exploratory analysis that there was still a small benefit from chemotherapy in women under 50 with risk scores above 15.

Individuals with scores from 16-20 had about 9 percent fewer events affecting invasive disease–free survival, including 2 percent fewer recurrences when treated with chemotherapy. The 21-25 RS group saw 6 percent fewer IDFS events."

2011 Stage I ITCs sn, premenopausal, Oncotype 16. 2014 Stage IV mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD Dx 2011, ILC, 1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 2014, ILC, 2cm, Stage IV, metastasized to liver/other, Grade 2, ER+/PR+, HER2- Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast Surgery Lumpectomy
Log in to post a reply

Jul 18, 2018 02:54PM - edited Jul 18, 2018 03:01PM by TomMorrow

My wife, age 49, just went through this decision based on an Onco score of 23. She had a lumpectomy with a 6mm IDC, Grade 1 (mitotic score of 1), ER+ (90%), HER2 -, no lymph node involvement and 12% ki67. One bad factor is that she is basically PR - (5%). First, based on an Onco score of 23, recurrence risk should be around 15% assuming Tamoxifen is taken. This is represented on the graph on page 1. The graph on page 2 is supposed to show the potential benefit of chemo. In my wife's case, we were told the potential benefit was approximately 3%. We have a primary MO who comes highly recommended. We also went for a second opinion with one of the top MO's at the Moffitt Cancer Center, a NCCN cancer center. Both of our MO's recommended against chemo, based on my wife's total profile. I posted this information in another thread, but will summarize my experience with both MO's here.

Primary MO

We had a detailed discussion of the Oncotype score (23) and the underlying studies that go along with the graphs on page 1 and 2 of the Oncotype Report, as well as the 2018 TailorX study, and how this all fits in with my wife's individual tumor characteristics and other factors (such as age). His bottom line recommendation is against chemo, as he believes the long-term risks of chemo outweigh the negligible benefits (~2% benefit) that could be achieved with respect to recurrence risk.

At first, I was pretty focused on the graph on page 2 of the report, which is intended to show the potential benefit with chemo. With a score of 23, it appears there is a potential to have a reduction of approximately 4%. But on the same page is a bar graph that shows the absolute benefit and, with respect to the intermediate range, the average is shown as a negative benefit (but up to a 4% positive benefit if you took the confidence intervals into account). In the published study, it states that "Patients with intermediate-RS tumors did not appear to have a large benefit, but the uncertainty in the estimate can not exclude a clinically important benefit," and that the benefit from chemo was "less clear" for scores in the 18-30 range. The report did note that tumors with aggressive features, such as high grade, low/no ER and higher proliferation index tended to respond better to chemo.

The 2018 TailorX study has shown that, for the age group 50 and below, there was no perceived benefit from chemo if the recurrence score was less than 15. However, there is "some benefit" if you have a recurrence score of 16-25 in this age group. If you are over the age 50, there is no perceived benefit from chemo if the recurrence score is 25 or less. The MO pointed out that there is no quantification of the "some benefit" amount that could be achieved based on the age subgroup of 50 or under. This is actually discussed in the study itself. First, the study concludes that there was no perceived benefit of chemo with a recurrence score between 11-25, without resorting to a subgroup analysis. The study was not designed to then look at subgroups within the total population and see if different subgroups can benefit from chemo. However, on page 15 of the supplemental materials, it is explained that while no subgroup interaction analysis was planned, they did look at the data to consider whether it suggests that some subgroups within the 11-25 score range might still benefit from chemo. The report states that "Because of the smaller numbers, it is very difficult to establish non-inferiority in individual subgroups, and they generally do not provide adequate power for establishing superiority of chemotherapy, so these analysis should be primarily viewed as descriptive and exploratory." Thus, the MO explained that the statement that there could be some benefit is observational only, and not backed up with proven statistics. Thus, it is necessary to look at other data points in making a recommendation on chemo.

The recommendation against chemo was based on the following factors. First, my wife's age is almost 49.5 years. Because she is closer to the arbitrary age 50 cutoff (where the study says over 50 and recurrence score of 25 or less can safely skip chemo), he felt that there could be more potential benefit with a younger patient in the 50 and below subgroup. Also, there are no aggressive characteristics of the tumor, except for the low PR (5%). He believes the recurrence score is higher than one might expect because of the low PR. Because the pathology suggests there are no fast growing or dividing cells, and the tumor was small (6mm), he would have to give a strong dose of chemo treatment to achieve a potential benefit (and again, he ballparks at about 2%). So he was effectively comparing the potential long term risks of chemo against an approximate 2% recurrence benefit (and the 2% benefit could actually be zero, as a recurrence score of 23 has the Tam and Chemo lines intersecting within the confidence intervals).

Second Opinion

The second MO explained that the 15% recurrence risk that is generally associated with a 23 score was not necessarily the percentage that we should focus on. This is because the 23 score does not take into account tumor size or grade (as examples). He was able to go to the Oncotype Recurrence Score Clinical Calculator (presumably for oncologists) and look at a subgroup analysis. By using the 23 recurrence score, 6mm tumor size, grade 1, and AI hormone therapy, he said the risk percentage we should focus on is 5%, which is what the score was recalculated as with the additional tumor characteristics factored in. If my wife took Tamoxifen instead of an AI, the percentage went up one point. We also discussed the 2018 TailorX study and how to weigh the fact that the study shows that the population tested, which had recurrence scores between 11-25, did not benefit from chemo compared to the observational statement that some 50 and younger with a recurrence score greater than 15 "could" benefit from chemo. He thought, again based on my wife's entire profile, that the study supported the no chemo decision. Both he and my primary MO calculated, at best, a 2-3% reduction which is statistically insignificant.

I will say that there was one point of divergence. My primary MO thought he would have to use a strong chemo regimen to try and obtain a benefit, given the small tumor size and low grade. A stronger chemo regimen has more long term risk, which he was focused on. The second MO said he would recommend an easier chemo regimen, where the long term risks (e.g., for leukemia or heart damage) was significantly less. However, even with a softer chemo plan, the absolute benefit was still 2-3%. So while there was some divergence on the path to the recommendation, the ultimate recommendations were consistent against chemo.

It was a hard decision, because at some level it felt like either decision was the wrong decision. But we felt like we had very experienced professionals providing a consensus recommendation and, therefore, decided to forgo chemo. Like others above, I would suggest talking with your MO and asking for their professional recommendation, rather than saying it's up to you. Understand the risks of both decisions and, if possible, obtain a second recommendation. You could also ask if the hospital your MO practices has a tumor board and have your case presented for recommendation.

I wish you the best as you navigate this, unfortunately, tricky question when the Oncotype score is in the intermediate zone. I do think we could have received a different recommendation if my wife was younger (not close to the age 50 cutoff in TailorX), had a higher grade or a larger tumor size.

Log in to post a reply

Jul 18, 2018 04:19PM - edited Jul 18, 2018 04:30PM by maiyen

Hi ShetlandPony, I am sorry for your experience and I hope that your current treatments are working for you well. I don't mind your bluntness at all and I appreciate your input.

I saw an MO for a second opinion who did not recommend chemo based on my hormone receptor status and said that Tamoxifen should be my treatment of choice, following rads. I asked about chemo for distant recurrence and he said no benefit, just take Tamoxifen. My primary MO was leaning towards not recommending chemo when I first saw her, but she wants to get the full picture from my surgical path report (I just recently had surgery). She initially stated that she's not sure if the toxicity from chemo will outweigh the benefits for me and she's at an NCI designated cancer center/teaching hospital. Both MO's are both active in current research, writing publications, specialize in breast cancer, etc.

I was fully expecting to be advised to have chemo based on the TAILORx results because to me, a small benefit is any benefit and I'm not one to shy away from a treatment plan based on potential side effects. I watched my mom's breast cancer go from early stage to IV in a matter of months so if I need to be more aggressive for myself then I will, but understand that this decision is not so black and white. I've been preparing a list of things to ask my primary MO when I have my follow-up appointment and I will include several of your questions since they would provide valuable information and I didn't ask the right ones when I saw the other MO. What concerns me about my score - 17, is exactly the same info that you posted...it's considered low and no benefit of chemo for over 50 but there still could be some small benefit of chemo for women under 50. I'd also like to ask about my Ki67 which is 30%. I know that many doctors don't even look at this any more, but some studies that I've seen say that under 15% tends to be luminal A and over 15%-20% could be considered more like or even as luminal B. I'm still trying to get clarification on this since luminal B often responds better to chemo. Finally, my Oncotype DX was done on the core biopsy sample rather than the mass removed from surgery - apparently it was ordered by the pathology lab which is not connected to either one of the MO's that I ended up choosing. Would there be the same score or is it possible that it could be different? So many questions...

Log in to post a reply

Jul 18, 2018 06:55PM TomMorrow wrote:

I'm not sure if your oncotype score would change, but my wife had a significant change in her PR percentage from core biopsy to surgical pathology. On the biopsy, she was strongly PR positive at 97%. On the surgical pathology, she was PR weak at only 5%. Both of the MO's we consulted indicated that her tumor likely had different "pockets" (I don't recall the word that was used) and that the surgical pathology was done on the whole tumor, rather than a discrete section. The low PR seems to have increased her oncotype score, compared to the result if the 97% PR from the biopsy was the actual result.

Log in to post a reply

Jul 18, 2018 08:31PM JNKK wrote:

Hi maiyen,

My MO strongly recommend that I get chemo. I was given the news on Monday. It was never part of my treatment plan. He never mentioned doing the test until I questioned it. Yes, I am getting a second opinion but from the same hospital - MD Anderson. I am sure i will get the same answer, but I want to hear it from someone else. I am also switching physician. I didn’t think our personality match at all. I will be seeing this person for the next 5 years, so I needs to I feel comfortable too

Dx 5/4/2018, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/11/2018 Whole-breast: Breast Chemotherapy 9/3/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Jul 18, 2018 09:11PM Meow13 wrote:

JNKK, idc 1cm grade 1 both er and pr positive no nodes, chemo really? How old are you?

Log in to post a reply

Jul 18, 2018 09:29PM JNKK wrote:

Meow13, I am 43.

Dx 5/4/2018, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/11/2018 Whole-breast: Breast Chemotherapy 9/3/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Jul 18, 2018 10:39PM Lisey wrote:

JNKK,

I was just barely 41 when I was diagnosed and scored a 20 on the test.  I was told no on chemo by my Oncologist and refused to agree until I took the Mammaprint test as a second opinion and it said 'low risk'.   Only then did I say no chemo.  I would suggest you look into the mammaprint.  It's great for intermediate scores like ours.  

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)
Log in to post a reply

Jul 18, 2018 10:52PM JNKK wrote:

Thank you Lisey, I will ask for it.

Dx 5/4/2018, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/11/2018 Whole-breast: Breast Chemotherapy 9/3/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Jul 18, 2018 11:02PM Warrior2018 wrote:

I have a similar diagnosis to you, am 42, scored a 19 on the Onco, and was told that I didn’t need chemo by my BS at a university hospital, a BC oncologist at Cleveland Clinic and my MO. Oh and I also saw an Integrative Onc and she agreed as well. I did have a partial mastectomy with lumpectomy with clear >4 mm margins.


AKA- Paleo Unicorn 🦄😊 Dx 3/14/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- (FISH) Surgery 4/25/2018 Lumpectomy: Left; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right)
Log in to post a reply

Jul 19, 2018 12:06AM nat_blue wrote:

I'm 51, so over the 50 boundary of the Tailorx study, but my MO at a major university cancer center didn't even feel that my little tumor needed an Oncotype test unless I had a strong interest in doing chemo. My oncologist said that the current standards don't recommend the test for certain low grade tumors smaller than 1cm. As I understand it and your MO should be able to clarify is that the Oncotype score is only a piece of the puzzle and should be combined with all the other characteristics of the tumor and the patient.

Dx 4/20/2018, IDC, Right, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR-, HER2- (IHC) Radiation Therapy 5/17/2018 3DCRT: Breast Surgery 6/26/2018 Lumpectomy: Right; Lymph node removal: Sentinel
Log in to post a reply

Jul 19, 2018 02:38AM Meow13 wrote:

JNKK, could be your age is why they recommend chemo, but still grade 1 suggests chemo might not be as effective. You could ask for oncodx or mammoprint test.

Log in to post a reply

Jul 19, 2018 08:28AM - edited Jul 19, 2018 08:29AM by Lisey

Meow, I was younger than her, with a grade 2 tumor that was bigger and my oncotype came back as a 20.  I would bet it's her PR value.. which while being positive may be just barely so.  I thought I had a low PR, but oncotype rated it around 40% rather than the 5% on the biopsy.  Her's could be the reverse.

In either case, I agree that the mammaprint would settle the matter.  Agendia works with patients too, so if it's out of pocket, you still pay very little to get the test. 

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)
Log in to post a reply

Jul 19, 2018 12:13PM ChelseaSculler wrote:

TomMorrow, thank you for posting the background to your, your wife's, and her doctors thinking. It is very close to what my decision-making process was in much the same situation although my PR was higher.

JNKK, if you can possibly talk to someone outside MD Anderson, it might help. I do think there can be a tendency for doctors in the same organizations to not have completely fresh eyes. But definitely agree, find someone you can get along with and trust! I wouldn't necessarily pick my MO as a friend, but I know he's excellent and I think I can talk honestly with him.

DX 49.5 Dx 3/21/2018, IDC, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 4/9/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 6/7/2018 Whole-breast: Breast Hormonal Therapy 8/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Jul 19, 2018 12:32PM TomMorrow wrote:

I got advice from someone in the medical profession suggesting that it is better, when seeking out a second opinion, to go to a different hospital, since the "philosophies" can differ between hospitals, but not necessarily by doctors in the same affiliated network.

My wife starts radiation, likely next week (she was mapped last week) and then it was suggested her hormone therapy will be ovarian suppression and an AI, rather than Tamoxifen. I believe this recommendation is primarily because of her very low PR.

Log in to post a reply

Jul 19, 2018 04:15PM JNKK wrote:

OCDAmy,

Did you have Taxol too or just AC? And what is UTI? Sorry, I am not familiar with different types of chemo drugs.

Dx 5/4/2018, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/11/2018 Whole-breast: Breast Chemotherapy 9/3/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Jul 19, 2018 04:17PM JNKK wrote:

Maiyen, what is your recurrence rate? Did your oncologist make any types of recommendations?

Dx 5/4/2018, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/11/2018 Whole-breast: Breast Chemotherapy 9/3/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Jul 19, 2018 04:57PM FarAwayToo wrote:

One more vote for MammaPrint. I honestly think they should switch from Oncotype Dx to MammaPrint, as the latter gives binary results. You are either high risk or low risk, no "grey areas" or sliding scale based on age. Ugh. If a test is to give info for treatment decisions, it should always be black and white.

Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/22/2018 Zoladex (goserelin) Surgery 2/27/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/4/2018 Femara (letrozole) Surgery 8/20/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
Log in to post a reply

Jul 19, 2018 06:03PM JNKK wrote:

ShetlandPon, thank you for sharing your experience and giving me advice. I am trying to get a second opinion now from another hospital, since I was told (and yes ToMorrow is right) that all the doctors at MD Anderson will give me the same advice as my oncologist. I start to think that chemo is going to be the answer. My score is on the border line, my recurrence chance is high. I don't want to get chemotherapy but if that is what I need to do to make sure that I will be here for my two kids, then I should just face it and do what I need to do.

Dx 5/4/2018, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 5/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 7/11/2018 Whole-breast: Breast Chemotherapy 9/3/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
Log in to post a reply

Jul 19, 2018 06:51PM - edited Jul 21, 2018 12:56AM by maiyen

TomMorrow, thanks for your input...hope your wife's radiation goes well. It's always helpful to hear what other MO's are recommending.

Hi JNKK, my recurrence rate is 17 and I'm also 43. I actually just got home from seeing my primary MO. After reviewing my surgical path report she thinks no chemo because I am highly ER+/PR+. If I do choose chemo, which she supports if I want to do to avoid "what if" and to gain the small extra %, then her regimen would be TC for 4 rounds. She said that I could do the Mammaprint if I want, but know that insurance may not pay for the test.

Did your MO state why he strongly recommended chemo (certain characteristics, etc)?

Log in to post a reply

Jul 19, 2018 10:02PM Lisey wrote:

Malyen, just as an FYI on the mammaprint.  My insurance declined it, and Mammaprint never billed me (yet .. it's been 2+ years).. however, Agendia said when I was deciding on the test that if they would bill me they'd only bill me $500...  Well worth it for the additional peace of mind I think . 

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)
Log in to post a reply

Jul 23, 2018 09:09AM edwards750 wrote:

I asked my oncologist why they used the Oncotype test and she said they have more history on the test. The vast majority of oncologists where I live used Oncotype. My BC/BS insurance paid the $5k for the test and Gemomic labs who conducts the testing said if they didn’t pay they would bill you on a sliding scale.

I’m wondering why insurance companies pay for the Oncotype test but not for Mammaprint. Either way it’s a barometer on your particular tumor. Insurance companies save a lot of money if they don’t have to pay for chemo so you would think they would more than willing to pay for the test.

Had BC not paid for mine I would have still had it done. I dodged chemo because my score was 11. I have an 8% chance of a recurrence.

Diane


Log in to post a reply

Jul 23, 2018 09:21AM Lisey wrote:

Edwards, Mammaprint came later to the game, but just last year, their test has been validated by the MINDACT trial.. showing that their low risk / high risk assay is very effective in dictating who can safely avoid chemo.  It's just now oncotype is in the minds of docs rather than the later Mammaprint. 

http://www.agendia.com/healthcare-professionals/breast-cancer/mammaprint/

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)
Log in to post a reply

Jul 23, 2018 11:25AM maiyen wrote:

Thanks to those of you who brought up the Mammaprint option and your experiences with it. I was hesitant to go for it while I was at my appointment with my MO last week because they were unsure of costs, but I've since called Agendia and they told me the most I would pay is $500 for both Mammaprint and Blueprint (like Lisey said). Am going to go ahead and have my MO have the tests done as long as we're okay with waiting for the results before my next treatment needs to start. I've always disliked how the Oncotype test was done with my core biopsy sample. Plus I came across a Q&A about Ki67 on Johns Hopkins "Ask an Expert" site and JHU's breast center reply stated that "starting in 2018, it will be a requirement to measure it because there are going to be major changes in the AJCC staging process for determining the stage of breast cancer". That makes it sound like there is some value in this test result. And since my Ki67 is considered high, but everything else is intermediate/low-ish (even my primary MO said that was a discrepancy between my Oncotype score and Ki67), it would be helpful to get one more test done to see if it sways high or low risk.

Page 1 of 2 (51 results)