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Topic: Ocotype dx score of 22- advice?

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

Posted on: Aug 21, 2008 10:21AM - edited Aug 21, 2008 11:40AM by 4bethann

4bethann wrote:

Hello, I am new to the forum and wanted to weigh in with my Ocotype dx score of 22.

I am 50 years old, and had mastectomy of left breast two weeks ago showing a 1.2 cm tumor, invasive carcinoma with ductal and lobular features, no lymphatic or vascular invasion, all margins clear, ER & PR positive, HER2 negative, showing a low proliferative index, stage 1, grade 2. One node removed, the sentinel node, and no cancer cells found.

Below is more data from my path report:
e-cadherin positive
ERA 99%
PRA 60%
HER2 negative (1+)
Ki67 5%

I was on Premarin since 1993 and stopped July 2 with my biopsy results.

I have a strong history of sensitivity to meds so chemo really scares me. I have a heart arrhythmia that can not be treated because the meds made my blood pressure drop dangerously, so I am fiercely protective of my heart, and I know b.c chemo can be hard on the heart.

My onco doc says it's a gray area and doesn't really have a recommendation for me, saying I have a 14% chance of distant recurrance in 10 years after taking 7 years of hormonal treatment, and that chemo could possibly give me another 2 to 4 percent, which may be as low and one and as high (but unlikely) as 6%.I have a secondopinion scheduled for Monday.

This is a difficult decision and wondered if anyone had any input they might share with me?

Thank you.

Dx 7/2/2008, ILC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Aug 21, 2008 11:09AM sflow wrote:

Hi--I had IDC 8mm with an oncotype score of 22. I am 58--57 at diagnosis. I opted out of the chemo as the side effects frightened me .The benefit factor was not huge. I think age is a factor too. My doctor supported my decision.

Dx 11/15/2006, IDC, Right, <1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2- (IHC)
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Aug 21, 2008 11:28AM swimangel72 wrote:

Hi - I'm 53 and had an IDC tumor sized at .9cm and an oncotype score of 22. In the beginning, my oncologist said I wouldn't need chemo at all, just Arimidex for 5 years (the tumor was ER+ 90%). I had a mastectomy of my right breast so he felt I didn't need any chemical "big guns". Unfortunately, my FISH report came back showing I was Her2+, so my oncologist put me on Herceptin for a year - but in order for the Herceptin to work, I needed to go on some kind of chemo. He chose Navelbine for me because it's not a "big gun" kind of chemo - it doesn't cause massive hair loss or heart problems. I have one more treatment with Navelbine, then I'll start on the Arimidex - the Herceptin will be finished next April.

If your oncologist isn't giving you his professional opinion as to what course of action to take (something he SHOULD do - he shouldn't leave you stranded with this tough decision) - I'd go to a second oncologist for another opinion. It gave me a lot of peace-of-mind to get a second opinion (which agreed with the first.) Also - you can write to the online oncologist for an opinion - I got an immediate response which also agreed with my first 2 opinions, so that was also reassuring (although I wouldn't substitute a free online service with seeing a REAL doctor.) Here's the link:

Bottom line - whether or not you go on chemo, be sure your oncologist puts you on Arimidex or some other anti-estrogen therapy. Good luck with your decision - let us know what you decide to do!

3/3/08 Right-side mastectomy with immediate muscle-sparing free tram; 3/9/08 Developed abdominal MRSA staph infection and hernia;Completed 4 months Navelbine and 1 year Herceptin; Arimidex - 3 more years! Diagnosed at age 53 Dx 2/5/2008, IDC, Right, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2+ (FISH)
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Aug 21, 2008 03:45PM nash wrote:

My oncotype was 18, and I had four docs tell me I had to do chemo. However, the drivers in my case were 1) age--I was 38 and 2) hormone receptors were only moderate (ER 49%, PR 31%). If I had been a bit older and had a higher percentage of hormone receptors, like you do, I might have been more comfortable doing HT only.

The numbers the onc is giving you sound about right. I'll be interested in what the second opinion onc says. With your history of heart arrythmia, I'd be cautious about the chemo, too. My heart flopped around all over the place while on FAC (AC with 5-Fu). Adriamycin is notorious for causing heart problems, though, so if you do end up going with chemo, there are "easier" combos to go one, like CMF or TC.  

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Aug 21, 2008 06:04PM san4850 wrote:

There's no right or wrong answer.  Based at your pathology report, if it were me, I'd say no to chemo.  Looks like your tumor is almost entirely estrogen fueled, which can be controlled by some kind of hormonal therapy (besides tamoxifen).  Ask your onc. if he'd consider putting you on Zoladex or Lupron, which are 2 hormonal therapies.  Your tumor is small and there is no LVI.  I've seen several ladies post on this board their oncotype scores being in the 20's and have declined chemo and they say they're doing fine.  Of course everyone's different, and you need to go with your gut feeling.  Suppose you decline chemo, and in the future the cancer comes back.  Who's to say you made the wrong decision and should have taken chemo when you had the chance to do so?  You made the best decision for you with the info you had at that time.

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Aug 21, 2008 08:58PM Gitane wrote:

You are really in the middle aren't you?  I guess that's the reason the oncologist doesn't have a strong recommendation for you.  The second opinion may help.  Sometimes the new oncologist just sees things a bit differently, or explains things in a way that may help you decide. If you are seeing a cardiologist, he/she may want to confer with the oncologist.  It would be nice if they could say, "Do this and you will be cured."  However, that's not going to happen, unfortunately.  It seems that having the choice is a good thing, it means you have a good prognosis, even without chemo, and that's not bad.

I chose chemo, but my clinical features were not as favorable as yours. Like you, I was on HRT right up to diagnosis.  My oncotype dx score was 23, but I didn't know that at the time; it wouldn't have changed my decision. I had 6 dose dense AC, 4 before and 2 after my mastectomy. Now I'm taking Femara.  

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Aug 22, 2008 03:04PM stillrusty wrote:


Your stats are similar to mine- except i am still waiting for my oncotype score- I should have that very soon.- I have ILC (it also had ductal features- but they ended up calling it all ILC) two tumors, .7 and 1.3 with lots of LCIS in between the two tumors- I had a uni mast July 9th. I will be 50 in Oct. I got two opinions also. The problem with the oncotype dx test is that huge gray area. They don't know if chemo is an added benefit or not- and that is what the TailorX trial is about- half go on chemo and half get hormone only. The test is helpful if you have a low score or if you have a high score......but when it is in the middle range- you are left with the decision- and that varies from person to person. I have decided that if mine is in the gray area I do not want chemo- but that is just me. My onc from Sloan said hormone therapy only- but also, I could do chemo if i wanted- but one of the "easier" chemo tx. Statistics are tricky to understand - but for me, the overall additional benefit from chemo seemed very low. So if the final additional benefit is an extra 1% some women want that extra step- some people want to be as aggressive as they can. I have a family history of heart problems and have PVC's. I don't really want to do chemo unless I have to. If you decide to do chemo, you will get through it, and they are able to manage the side effects better today than in the past. I really hate making choices like this....because how are we to know??? I'm really hoping my score comes back low....we'll see...  I'm keeping my fingers crossed. I have a hard enough time trying to decide what color shoes to buy...let alone all these chemo choices.....

Dx 6/10/2008, ILC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Aug 31, 2008 06:43PM dalycity wrote:

Hi, 4Bet:

Just saw your posting. I also have invasive ductal (but no lobular) 1.2 cm, Stage 1, Grade 2. ER+/PR+, HER2-, clear margins, no nodes, diagnosed at 55 years, post-meno.  I think if I were in your shoes, I would not do chemo because I would protect my heart. And like the other ladies say, if your doc tells you that you are on my fence, that even he doesn't know. Best wishes,

dalycity Dx 11/30/2006, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-

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