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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 8, 2008 05:54PM

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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Jul 31, 2018 10:02PM DebAL wrote:

Rimroc, I agree with scrafgal. You mentioned already being 5 weeks out from surgery. I started chemo at 6 weeks. I also agree you fall in that 60 day window. Maybe a nurse navigator can help direct you to a second opinion? It's really important that you feel comfortable with your plan. Maybe your breast surgeon can facilitate things along and help line up a second MO opinion?

Dx 1/22/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- (IHC) Surgery 2/11/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 2/12/2018 Mastectomy: Left, Right Chemotherapy 4/2/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/13/2018 Arimidex (anastrozole) Surgery 8/8/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/19/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery
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Aug 1, 2018 03:16AM RimRoc wrote:

thanks Scrafgal-- I appreciate your insights. The way I see it, the procedure that most disturbed the intact tumor was the core biopsy, which was May 22 or >60 days ago. The mastectomy "should" have taken out the entire mass of glandular tissue, tumor intact. So if any cells escaped to cause trouble, I would guess it was from the biopsy.

My plan of the moment is to start chemo in the next week or two, and go for a second opinion when the appointment finally rolls around. If I hear profoundly different results, I can always just leave the practice I'm in locally...but if I get the same basic message I guess I'll just stay the course. So much is so indeterminate...very frustrating and unsettling.

thanks again for your reply

Surgery 10/23/2013 Lumpectomy: Left Dx 10/24/2013, DCIS, 1cm, Stage 0, Grade 3, ER+/PR- Radiation Therapy 10/31/2013 Dx 5/22/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- (IHC) Surgery 6/26/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel; Mastectomy: Left Hormonal Therapy Arimidex (anastrozole)
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Aug 7, 2018 02:01AM susie_2017 wrote:

RimRoc,

I'm sort of in the same boat as you. My breast biopsies stated I was Er+, Pr+ and Her-, grade 3, stage 1. I had lumpectomy and my lymph nodes(4) were clear. Then I waited for onco-score to come back. It was a high 44. Took me by surprise because my MO thought I wouldn't need chemo as I caught it early. However, my breast surgeon thought it was strange that my MO wasnt preparing me for chemo since I was a grade 3, usually a sign of triple negatives. So my oncoscore also showed me as triple negative when the actual tumor was dissected. When I see my breast surgeon she said the biopsies have the highest chance of human error and I was weakly positive. Therefore I should go by the actual tumor results of triple negative. My MO says the opposite, he said we must treat as positives. I did 6 months of AC+T chemo, and 20 days of radiation. I did get my ovaries taken out but not because I believe I'm positive hormones but because I simply didnt want a period anymore! So my big question is do I take the Arimidex or not. My DEXA scan shows me having osteopenia. I wish there was one guideline and all the docs followed it cause I'm so confused as to why I got AC+T and others didnt.

Oncotyping = 44 Dx 3/24/2017, IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 5/5/2017 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 6/23/2017 AC + T (Taxol) Radiation Therapy 1/4/2018 Whole-breast: Breast Surgery 4/18/2018 Prophylactic ovary removal
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Aug 7, 2018 07:28PM edwards750 wrote:

Dang Susie your doctors are all over the place.

I had osteopenia too - now have osteoporosis. Ugh. I took Arimidex for 1 year and then my MO put me on Tamoxifen. I had to question her about it because Arimidex attacks the bones so I had a year of that. I would talk to my MO and express your concerns about taking it.

Thing is they should already know likemy MO.

Diane

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Jan 5, 2019 06:31AM Meow13 wrote:

I am a 7 year survivor with oncodx score 34 for invasive cancer. I did 4 years AI drugs no chemo.

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Jan 5, 2019 11:01AM kaylie57410 wrote:

Good morning to all..I was dx stage 2 18 months ago-lumpectomy-sentinel node positive--grade 3; hormone positive-was offered 4 TC or DD ACT- chose tc as I was 68-have 15 year hx mild hypertension- a cardiac risk factor-and on researching learned the ACT would have higher risk of hair loss-this more upsetting than the dx- my oncotype was 45--I chose the Tc and did Cold capping with Penguin caps= saved 75-80 % of my hair--I accepted that the TC might be about 3 percent less effective for 5 year disease free statistics,but willing to be at peace with this choice as saving my hair made all the difference for me coping emotionally. Had I been 50 years old , may have chosen differently.

I then had full course of radiation including nodes and "boost" to the tumor site-I have just passed the 1 year point on Letrozole with only mild side effects. I do have some mild hair shedding starting at 5 months in-hoping it will level off- will probably have to stay on it for 7/8 years per the newer guidelines.

I am also in the Pallas trial on the letrozole only arm' evaluating the addition of Ibrance for prevention of recurrence in early stage-will be another year and a half before results start coming out.

We each have to make the choices we can be ok with. I am disease free now- a year and a half out and moving on with life.a day at a time..best to all,Kaylie

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Mar 10, 2019 12:28PM RimRoc wrote:

Just checking in. I was diagnosed with stage 1 L breast cancer in May of 2018. I had had DCIS in that breast in 2013, so this was a recurrence. Did a mastectomy and was initially told I should just take an AI and I would be done. At my insistence, we ordered an Oncotype DX and it came back with a recurrence risk score of 50 and classified my tumor as TN. My trust in my MO is pretty low as she had said I needn't bother with the Oncotype. Now I pretty much get a second opinion on everything.

I did one treatment of TC back in August 2018 and had terrible allergic and neuropathy reactions so my MO switched me to 3 rounds of AC. So four rounds altogether. I sure hope that was enough!! I did lose all my hair. I have to say, now that I am more than 5 months post last chemo treatment, I feel just fine although my stamina is less than before all this started. I am continually saddened when I look in the mirror. Even tho I now have an acceptably stylish short gray hair do, it is NOT my usual hair and it is a reminder of having cancer. Ugh. All I can do is wait for it to grow more.

My MO started me on tamoxifen as a bone scan showed two vertebrae with osteopenia/osteoporosis. My primary care doc laughed at the idea of an osteopenia dx as the over all DEXA score was well within the normal range. He declined to treat me for osteoporosis.

Since my Oncotype was 50 and I was classed as TN by Oncotype (and my biopsies put me at only 15% ER+, 0%PR+ with only weak staining), I feel like all the estrogen modulators are pretty much a waste of time. That said, I don't find it bothersome, so I'll take the damn pill. Maybe it will help prevent a new cancer in the breast I still have.

What is REALLY bothering me (besides my hair) is this business of cutting out alcohol. I really really enjoyed (past tense) my 1-2 glasses of wine everyday. Now the research is showing for a woman my age (67), it raises my recurrence risk by about 40% (so from around 13% to around 18%). It seems tougher to give up that daily glass of wine than to go thru all the crap of the past year. I guess because it is "forever" and not just for a relatively brief period.

I find it hard to stop thinking about the fact that I had cancer and am at a non-trivial risk of recurrence. One the one hand, it has been less than a year, so maybe my degree of preoccupation is pretty normal. How long did it take you guys to quit thinking about cancer and recurrence on a daily basis? A year? Longer?? Any idea of "normal" on something like this?

Anyway, just venting. I hope everyone else is feeling well!!

Surgery 10/23/2013 Lumpectomy: Left Dx 10/24/2013, DCIS, 1cm, Stage 0, Grade 3, ER+/PR- Radiation Therapy 10/31/2013 Dx 5/22/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- (IHC) Surgery 6/26/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel; Mastectomy: Left Hormonal Therapy Arimidex (anastrozole)
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Mar 10, 2019 01:10PM DebAL wrote:

hi rimroc, Diagnosed 14 months ago I'm 9 months out from chemo. I still walk by the mirror and I'm far from the old me. But at the same time I remind myself it's just stage. I'm thankful for feeling good so the hair thing doesnt bother me too much. Im thankful its growing and just make the best of it.

Do I think about cancer and recurrence every day? Yes, but it enters and leaves my mind pretty quickly. I dont obsess and it's not in the forefront of my mind. Worrying wont change anything. I take each day as it comes. I dont want to worry until i have to worry. Easier said than done sometimes. Everyone is different. Some might disagree but i say enjoy life and have that glass of wine from time to time.

Exercise has helped me alot. How are you doing there? Also, if you feel you need to ask your pcp about an antidepressant please do. I will never forget something another member said. She said it makes her "care less". Sounds like great place to be. Hugs to you deb

Dx 1/22/2018, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR-, HER2- (IHC) Surgery 2/11/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 2/12/2018 Mastectomy: Left, Right Chemotherapy 4/2/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 6/13/2018 Arimidex (anastrozole) Surgery 8/8/2018 Reconstruction (left): Fat grafting, Silicone implant; Reconstruction (right): Fat grafting, Silicone implant Surgery 12/19/2018 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery
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Mar 10, 2019 01:49PM HikingLady wrote:

RimRoc I'm with you--I share some your same feelings of disorientation. I'm really doing okay mentally, but if I let myself, I can spiral into anger about everything I've been through. My Oncotype was 59 and my tumor was also Grade 3, which is another source of my anxiety, of course. I kept my hair through chemo because of Cold Capping. However, I have a completely new torso, with discomforts and weird sensations. The right side didn't want to stretch much because of previous radiation, so my new Foobs are rather small. It's disorienting to have a new shape, and weird to have the fake things in me.

In my brain is a little war between 1. Gratefulness for evidence-based medicine and a good chance of being cured, and 2. Fury that I've had so much trauma and that my Self is so different now, inside and out. Oh, plus the ongoing terror of a recurrence, of course.

I concur with DebAL that exercise can help in all ways; mental and physical well-being. And, do ask your primary doc about an antidepressant. You deserve to live with some joy. We've all been through a ton of trauma. It seems pretty obvious that it will take its toll on us in many ways.

I share your annoyance about the alcohol restriction. My husband and I barely ever drank a drop for 20 years when we had children at home. In these later years (I'm 61), we started enjoying 1-2 drinks maybe 3 times a week. Now I feel horribly worried about this. Ha ha, not quite enough to stop enjoying the drinks, lol.... My MO said three drinks a week is okay, and more is not. It feels like a huge sacrifice to give this little pleasure up. So, if I go ahead and have 2 drinks about three times a week, which I usually do, I'm doubling the amount that my MO said was safe. Terrible of me. This means that if I have a recurrence, I'll blame the martini + glass of wine that I've enjoyed so much. Or, if I comply with the recommendation, and hardly ever have a drink, and get a recurrence anyway, I'll resent the absence of those Fun Units. GRRRRR

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 11/7/2018 Arimidex (anastrozole) Surgery 1/2/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Mar 27, 2019 12:48PM nottoday wrote:

To my high-RS friends who are a few years into their AI treatment - what advice are you getting from your medical specialists on length of time to remain on? The trials results so far are not particularly clear-cut, and they often don't specifically address our high-scoring group. Obviously, I'd love to ditch the stuff after year 5 if it doesn't mean incurring a high risk of recurrence.

Dx 7/23/2014, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 10/21/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/19/2015 Aromasin (exemestane)
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Mar 27, 2019 09:04PM moth wrote:

nottoday - how strong was your ER? I think that might be more of a factor. In my case, because oncotype essentially classes me as TN my team advised against tamoxifen at all (my ER was about 10% on the pathology originally, less than 10 on the repeat pathology report)

Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC 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
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Mar 28, 2019 03:58AM Murfy wrote:

Hi nottoday! Have you considered using the Breast Cancer Index test? Might help in your decision-making.

Dx at 62: Oncotype=52; Path (ER=99%, PR=0%, Ki67=55%) Dx 10/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 11/13/2017 Mastectomy: Left Chemotherapy 1/12/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/30/2018 Aromasin (exemestane)

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