Topic: Long term "high oncotype test" survivors

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

Posted on: Aug 8, 2008 10:54AM

Posted on: Aug 8, 2008 10:54AM

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.

Dx 4/1/2005, IDC, Left, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+, HER2- Surgery Lumpectomy: Left; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Saline implant
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Dec 13, 2012 01:52PM QuinnCat wrote:

Oh Cheryline, I know.  My gf was grade 3, stage 3, though triple positive, and she is alive and well over 10 years later.  I worry about my Stage 1, so I get it.

VoraciousReader - I'm not so voracious, so will look at your link when I get a nice block of time.  Thank you.

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Dec 14, 2012 06:32PM SharonS wrote:

Hello All - First sorry everyone is here.  Today was my oldest son's 30th birthday and started out great remembering that great event.  Then all the tragedy in Conn, and also the police officers shot down in Memphis, where my youngest lives.  Then a call from my breast health navigator with oncotype results.  This is my second cancer.  First in 2008, lumpectomy, chemo taxotere/cytoxan, radiation, tamoxifen for 4 years.  Then this fall found a discharge on my bra, other side.  Originally thought to be benign papilloma, but also found IDC.  Decided on BMX and tissue expanders a little over 3 weeks ago.

Now tumor is a lot like my last one ER/PR+ HER2-, 4 lymph nodes all negative....so they were just thinking aromatase inhibitor....now today oncotype is 31.....will know more Monday....but looks like chemo - AGAIN.

I am very healthy, in fact I teach it....

Right now kind of dazed......thanks for a place to vent...

Dx 1/1/2008, IDC, 1cm, Stage IIB, Grade 1, 1/21 nodes, ER+/PR+, HER2- Surgery 1/2/2008 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Chemotherapy 2/24/2008 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/19/2008 Breast Dx 10/12/2012, IDC, ER+/PR+, HER2- Surgery 11/19/2012 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/26/2012 AC + T (Taxol) Surgery 1/7/2013 Reconstruction (right): Tissue expander placement Surgery 4/30/2014 Reconstruction (right): Tissue expander placement Surgery 6/24/2014 Reconstruction (right): Tissue expander placement Dx 9/8/2015, IDC, Left, 2cm, Stage IIA, Grade 2, ER+/PR-, HER2- Surgery Lumpectomy: Left
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Jan 21, 2013 08:20AM squidess wrote:

It's been about a year, and I thought I'd post an update. This post, even though old, has stuck in my mind. It's rare anything stays in my mind for a year! But I hate to think that my gorgeous sis's with a high oncotype score have no hope.

So here's the update... much to the consternation of my cranky boss, I'm still around and kicking another year later! Closing in on the 6 year mark and healthy as a horse. (A plump horse, that is.)

I got another 5 years of either AI or tamoxifen (my choice) given my high risk. Thought I was done, but oh well, what the heck. If I've gone this far, I can do another 5 years of side effects.

I learned to ride a motorcycle this year. That is an absolute hoot! Nothing like flying down the road with the wind in my helmet (I didn't go through chemo to smash my noggin all over the pavement) and waving to the other guys on bikes. Ahhh the brotherhood of the bad-a$$!

I LOVE being this age (50ish)! I realize that just the sight of me scares the young guys at work. One little stare over my glasses and they melt into the floor and slink out of my office. That is power!! Why are we so scary at this age?

If you got a high oncotype score, for sure you are being treated aggressively. And the good news is that these aggressive cancers tend to respond better to treatment. There's TONS of hope that you have had a complete response to the treatment regimen.

My dear sisters, if you are reading this, you are alive and life is enjoyable. We're not here on this earth to worry about the end. We have all been given a second chance to find our path in life. Focus on that, and not your disease. Go find your own motorcycle and enjoy life!

~Squidess (smoooooooch! love you all! you are beautiful, you really really are!!!)

2007: 2.4 cm ER+/PR- Her2- Oncotype: 35. Flat-chested and more Bada$$ than ever.
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Jan 22, 2013 09:09AM QuinnCat wrote:

Squidess - thank you so much.  Your "stats" are close to mine (I'm almost PR-), so this means a lot. Laughing

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Jan 25, 2013 09:25AM ablydec wrote:

Ditto that.  I peeked onto this thread because my Oncotype came back 53, and I got a little spooked.  (Especially since my mother was diagnosed at the age I am now, 48, and died of it 5 years later).  But I  started my chemo, I'm doing fine, and as you - and my MO said - these are the types that respond very well to aggressive treatment.

Squidess,  I love your attitude, and that line, "Go find your own motorcycle and enjoy life!"  is a real keeper.  I will do that!  :)

Dx 9/24/2012, IDC, 2cm, Stage II, Grade 3, 0/1 nodes, ER+/PR+, HER2+ Surgery 10/11/2012 Lumpectomy: Right Surgery 11/2/2012 Lumpectomy: Right Surgery 11/23/2012 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 1/9/2013 Herceptin (trastuzumab) Chemotherapy 1/9/2013 Carboplatin (Paraplatin), Taxotere (docetaxel) Hormonal Therapy 5/20/2013
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Mar 6, 2013 10:25AM the_roadshow wrote:

Hi all,

My Oncotype DX came back with a score of 44 and I'm so glad I found this forum thread. My oestrogen receptive score was 8/8 so I was wondering if there would be any benefit to ovarian ablation/removal/suppression meds. Has anyone else been advised to have this or had it done? My onc hasn't mentioned it but it makes sense to me. If I have chemo, radiotherapy and tamoxifen, sure the tamoxifen will hopefully prevent it coming back in the breast but what about my oestrogen levels and other receptors around the body. I also got my report back in the post today (surgeon was reluctant to release it, I've been chasing him for 2 weeks) to discover on page 9 that they've left DCIS cells in the margins. Should I be worried about this - my OS never mentioned it? Thanks ladies.

Oncotype DX score 44 Hormonal Therapy 1/23/2013 Dx 1/24/2013, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 1/27/2013 Lumpectomy: Left Surgery 1/27/2013 Lymph node removal: Left, Sentinel Chemotherapy 3/14/2013 CEF
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Mar 6, 2013 12:15PM 1OUgirl wrote:

Hello, I'm the lady that started this blog and I just wanted to post that I have gotten many private messages in my private email but since I didn't know I had a place on this form for private messages and my notification of this was turned off, I have never gotten back with anyone that has private messaged me.  So sorry.  I have rectified that situation by turning my notification on. I came back to this blog and have just seen "the roadshow" posting and I wanted to reply to that.  As of April 1, 2013 I will be an 8 year survivor of breast cancer with an oncotype DX score of 52.  Praise the Lord.  But when I had my tumor removed, doc did an MRI on my breast and noticed the margins were not clear.  My doctor said that there is no question but to go back in and get EVERYTHING that remotely looked like cancer.  I had another operation to remove any remaining cancer cells and the report came back that it was DCIS.  The doctor said that they would NEVER leave any DCIS in my breast if they could help it.  It is to be removed and treated just like the cancerous tumor.  So I would unequivocally talk with my doctor about DCIS cells still left in my breast.

Dx 4/1/2005, IDC, Left, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+, HER2- Surgery Lumpectomy: Left; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Saline implant
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Mar 6, 2013 12:47PM the_roadshow wrote:

Hi 1OUgirl, congratulations on being an 8 year survivor! Thanks so much for writing back. I will definitely need to speak with the surgeon again. My breasts are small and they ran out of breast tissue but maybe that means that I'd be better off with a mastectomy. I really don't like the idea that they've left some DCIS in there.

Oncotype DX score 44 Hormonal Therapy 1/23/2013 Dx 1/24/2013, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 1/27/2013 Lumpectomy: Left Surgery 1/27/2013 Lymph node removal: Left, Sentinel Chemotherapy 3/14/2013 CEF
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Mar 13, 2013 01:32PM - edited Mar 13, 2013 01:33PM by 1OUgirl

One thing I would like to stress about the ladies that score high on the onco text.  My onc said that it is a great advancement to have this test because many ladies such as I with stage 1, no lymph nodes involved and the tumor being only 9 mm is that most doctors would have told me that to go home and live my life because I am one of the lucky one's who will probably never deal with this cancer again.  But the doctors always knew that there was a certain section of these very women with all those great stats that were coming back to the doctor with stage 4 cancer a few years later so the doctors needed a test to weed out those very ladies that truly did need much more agressive treatment.  My breast cancer was diagnosed only 9 months after this test came on the market.  I remember feeling that lump probably about a year earlier but tried to find it again and couldn't so I went on with my life.  If I had found it back then and they removed it without the onco test score, I would never had the aggressive treatment that I received and my onc says she isn't sure I would be here today.  So I thank God for that test, even though I didn't like it's results on me.

Dx 4/1/2005, IDC, Left, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+, HER2- Surgery Lumpectomy: Left; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Saline implant
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Mar 13, 2013 05:03PM - edited Mar 13, 2013 05:04PM by QuinnCat

1OUgirl - thank you for coming back and please continue to come back!  You were one of the first ER+ Stage 1's I found here with a high oncotype score (ofcourse and her2neu negative) and this many years out from treatment.  I'm sure many in your same situation have moved on, but I appreciate your posts so much. Your outcome gives me hope and I'm sure, many others.

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