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Topic: Long term "high oncotype test" survivors

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

Posted on: Aug 9, 2008 02:24AM

1OUgirl wrote:

Is there any long term survivors who have had a high oncotype score.  I know that this test is relatively new but I also know that it has been on the market at least 4 years.  So I know that "long term" regarding this test isn't very long term.  I had it done 3 years and 4 months ago.  My oncotype score was 52.  My onc told me that the test had been on the market only about 8 months.  I'm just curious about others who have had an extremely high score and are still clear (so to speak).  I am doing great with no signs of any kind.  Is there alot of others out there?  By the way, I love this site.

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Oct 14, 2019 12:46PM - edited Oct 14, 2019 12:47PM by Beesie

Meow, the 6% with high Oncotype scores who did not receive chemo were "non-compliant", since these results come from the TAILORx study and all participants with scores of 26 and higher were assigned to have chemo. So it wasn't a matter of choice; it was the study that determined that everyone with a high score would get chemo.

What this means is that while this new report is very favorable for those who have chemo + endocrine therapy, the comparative information provided about the benefit of chemo versus endocrine therapy alone is actually just an estimate using extrapolated data from a very small sample in the NSABP B20 study.

For those with Oncotype scores of 26-30, the TAILORx distant recurrence-free rates were 94.6% at 5 years and 88.5% at 9 years for patients who had both chemo and endocrine therapy. This is compared to the estimated rates of 89.6% at 5 years and 80.6% at 9 years for those who had endocrine therapy alone, based on the estimate extrapolated from the B20 study. So 5% extra metastatic risk reduction benefit from chemo at 5 years and 8% at 9 year. That seems positive.

But what if the estimates calculated from the B20 study are off by 4% or 5%? As the chart below shows, for patients with Oncotype scores 11-25 who had endocrine therapy only, TAILORx found lower metastatic recurrence rates than B20. Using a 20 score as an example, B20 projected a 10% rate of mets with endocrine therapy alone whereas TAILORx projects only a 5% rate of mets. This is a chart from Genomic Health (the Oncotype people). Compare the top and bottom charts for the 11 to 25 scores, the area highlighted in green. The bottom chart, the TAILORx results, shows approximately half the recurrence rate as the top chart, the B20 results, when comparing the "Hormone Therapy" only line.

If this same difference between the two studies extends to higher scores, which is logical but we can never know since TAILORx didn't include a hormone therapy only arm for the higher scores, it would wipe out most of the estimated (using B20) benefit of chemo for patients with scores of 26 to 30.

Above a 30 score, the estimated difference between chemo + endocrine therapy vs. endocrine therapy alone is much greater, so even if the endocrine therapy only estimate is off by 4%-5%, the benefit from chemo would still be significant.

All this to say that this new analysis of TAILORx is interesting and reassuring for those with scores above 30. However for those with Oncotype scores of 26-30, to my reading, there is still no reliable data on what benefit chemo might provide vs. endocrine therapy alone.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 15, 2019 03:23PM - edited Oct 15, 2019 03:26PM by UpstateNYer

So, if I am reading this right, by having chemo and doing endocrine therapy, with an onco score of 48, my rate of distant recurrence at 10 years is just under 15% ? My onco report showed a distant recurrence rate of 37% with endocrine therapy alone. I am therefore getting closer to a 22% benefit from having chemo and doing endocrine therapy. I guess this makes sense to me. Thanks for posting this Beesie.

Into every life a little rain must fall Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Dx 2/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, ER+/PR-, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/3/2019 Lumpectomy: Right Chemotherapy 5/8/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/7/2019 Lumpectomy Hormonal Therapy 9/5/2019 Arimidex (anastrozole) Radiation Therapy 9/11/2019
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Oct 17, 2019 02:00PM LimnoGal wrote:

This brings up my question-how much benefit do AIs provide for someone who had a weakly ER+/PR- tumor? My oncotype score was 49, and was triple negative by oncotype. I did LX, rads, chemo (TC x 4) and have a little over three years of femara under my belt at this point.

Moving on.... Dx 11/2016, DCIS/IDC: Papillary, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER+/PR-, HER2- Surgery 2/11/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Balloon-catheter: Breast
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Oct 17, 2019 07:25PM Britgirl wrote:

Hi all - Greetings from the UK!!

In the UK Oncotype has only been available for the last couple of years so we don't have a thread like this. I'm so pleased to have found you!

I had an Oncotype score of 31. Unfortunately I had to fight for the test following my mastectomy (left side, multi focal (4 tumours 10mm, 8mm, 2mm, 1mm). Grade 2, ER+ HER2- no lymph node involvement. I was told I was such low risk of recurrence that I didn't need the test. Having to fight for it meant that my chemo didn't start until day 76 after surgery which really scares me. From reading this thread I see that there is a 60 day limit for chemo in the US. In UK its 90 days...but ideally should be started within 60. I've read research that states for ER+ cancer within 90 days is fine ...but still I'm scared and angry that the test wasn't performed straight away considering there were 4 tumours that weren't there 18 months previous!!

Anyhow ….I have a question for all you ladies who had a mastectomy on affected breast. Did you also have your other breast removed as a precautionary measure due to your high oncotype score? Was this recommended to you by your medical team or was it personal choice? I know there is debate in the medical profession about whether a contralateral mastectomy is helpful and in the UK it isn't done usually. But for me I feel its something I want to have done to help me move forward.

My mastectomy was in September 2018. I had a tissue expander put in which is still in situ due to having chemo and then radiotherapy. It should be changed for implant Dec/January time. I'm seeing my surgeon in 2 weeks to discuss a date. He knows I feel that I want a second mastectomy but he thinks this feeling will pass, but I know it won't. I just wanted to know how other ladies felt and their experiences.

I look forward to hearing from you x x

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Oct 17, 2019 11:36PM - edited Oct 18, 2019 12:03AM by Scrafgal


On the advice of my medical team, I kept my other breast since there was NO cancer found there and the idea of having one natural breast appealed to me. Do I still get anxiety about cancer in the other breast (or a recurrence from the original cancer)? Yes. I am not sure that my fear would ever really go away, even if I had a bilateral mastectomy!

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
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Oct 17, 2019 11:48PM nottoday wrote:

Dear Britgirl,

Welcome, and good for you for fighting for the best treatment.

I'm sure we all feel differently about prophylactic mastectomy. I did have bilateral mastectomy mostly because my 2.4 cm tumor was diagnosed 50 days after I received a negative mammogram. I felt like I'd never be able to trust those results again. I am happy with the decision. I absolutely love not having to undergo any mammograms, ultrasounds or screening MRIs. Scrafgirl is right. We all know there is a risk of distant recurrence; it's just our reality. Can't sugarcoat it. However, I'm feeling very good five years out, and I'm busy pursuing many things in my recent retirement. Just started law school. :). I hope and expect things will go well for you, too, whatever decision you make.

Dx 7/23/2014, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 10/22/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/19/2015 Aromasin (exemestane)
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Oct 18, 2019 12:05AM HikingLady wrote:

Hi Britgirl,

Sorry about your worries that you describe. The Oncotype DX is rather recent in the US, too, as far as a standard of care, and it's proprietary. It's taken awhile for the data to be confirmed as far as deciding chemo, so it's kind of new for us, too, to have that information available. I think it was around May of 2018 that the final numbers came out for Yes/No chemo above certain numbers.

I had a bilateral, and the left mastectomy was prophylactic. Why? To reduce my future breast cancer risk down to nearly zero, not completely zero, but it's quite low now. I wasn't able to face the risk of a third primary; too much wear and tear on my psyche! (see my info below for my history---#2 in 2018 was a new primary). It turns out, LCIS was found in my left (prophylactic, non-cancer) breast. My surgeon said this added to the reasons that the bilateral decision was a good one for me.

There was no pressure either way. My own surgeon, herself, had a prophylactic / bilateral after cancer in one breast, as did another partner in her surgical group, so she particularly appreciated my anxiety about this decision, and confirmed that her reasons were similar---to lower her chances a lot of going through it again.

No breast at all means no erotic sensation, and I'm sad to have none at all. For 15 years after #1 cancer in 2003, I did still have one breast that 'worked' that way. My right breast had no sensation at the nipple after lumpectomy + radiation, as is quite common. And, in fact, the lumpectomy and radiation DID cure, for sure, 100%, the 2003 #1 cancer. Which means that at the time, that decision (lumpectomy, no prophylactic bilateral mastectomy) was a reasonable one for me. I knew, of course, that I had an elevated risk (because I'd had a breast cancer) of having it again, and when #2 came along, of course, I kind of wished I'd had a bilateral in 2003! But, who has a crystal ball? My particular situation, of getting another, 2nd breast cancer after a first one is cured, is kind of unusual, but it does happen.

If I were you, I'd get super familiar with all of the risks and benefits of the decision of having your other breast removed. Surgical risks (lymphedema, complications, healing time, mobility) and benefits (reduction of risk of future cancer) and discomfort decisions (tissue expanders, reconstruction yes or no) and keep collecting data to make this difficult decision. There won't be an easy path, just the one that you feel the most comfortable with and committed to.

If you feel comfortable doing so, put your information settings (biography, DX, TX, etc.) as Public, and they'll appear below your post; it's helpful for me to see others' information, to have a context for conversations, etc.

Dx 3/2003, IDC, Right, <1cm, Stage IA, 0/2 nodes, ER+, HER2- Surgery 4/9/2003 Lumpectomy Radiation Therapy 6/10/2003 3DCRT: Breast Hormonal Therapy 8/8/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/25/2018, IDC, Right, <1cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 5/22/2018 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 6/25/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 11/6/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 18, 2019 05:40AM Britgirl wrote:


Thank you for your considered replies. Its interesting and really helpful to know what other women have chosen to do and why.

Scrafgal - I know what you mean. The anxiety about recurrence would still be there even if I had a second mastectomy, but for me I think I would feel that bit more reassured.

nottoday - I agree with you about not having to have mammograms with a bilateral mastectomy. I had my first annual surveillance mammogram on my right breast in August. Throughout July I was in a complete panic with the build up to it. Then there was a delay in the results so I had to wait 4 weeks through August for the result. (In the UK you don't get the results straight away on the NHS, theres usually a 2-3 week wait. Not sure if that's similar in the US). I really don't feel I can go through that every year. Like you experienced, mammograms aren't always right...and that's scary too. I can see why bilateral was the best thing for you after that. It sounds like you are enjoying life and that's what we have to do.

Hikinglady - you're so right in saying who has a crystal ball! There's so much uncertainty with this horrible diagnosis. I guess we just have to do what feels right for ourselves. Yes I'm trying to get together as much information as possible to make an informed decision. That's why its so helpful to have found you ladies who've already been there. Incidentally it was only through my own research that I found out about the Oncotype DX test in the first place. It was never mentioned to me by my medical team!! I haven't added any diagnosis information yet but will do tomorrow when I sort out my diagnosis letter - so I get it completely right!

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Oct 18, 2019 10:57AM UpstateNYer wrote:


By any chance did you have genetic testing done? That would definitively answer the question for you. In the end, you have to do what's right for you. There are pros and cons to both, as others can attest to. I have gone through a lot with doing the lumpectomy. I needed 2 surgeries, then chemo (onco score of 48), then 3rd surgery, then 16 radiation txts. I will need mammograms and MRI's regularly. When I asked my SO about mastectomy, she told me, "No". I wish you the best of luck. So sorry to hear it took so long to start your chemo. But, in my opinion, you did the right thing in receiving it.

Into every life a little rain must fall Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Dx 2/8/2019, IDC, Right, <1cm, Stage IA, Grade 3, ER+/PR-, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/3/2019 Lumpectomy: Right Chemotherapy 5/8/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 8/7/2019 Lumpectomy Hormonal Therapy 9/5/2019 Arimidex (anastrozole) Radiation Therapy 9/11/2019

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