Topic: Should I do chemo despite oncotype score?

Forum: Young With Breast Cancer — Connect with those under 40 who have been diagnosed.

Posted on: Mar 10, 2020 05:10PM

Posted on: Mar 10, 2020 05:10PM

Sshibal wrote:

Hi everyone!

I'm 35 years old. My mom had BC at 55, but was aware of the lump since she was 40. Doctors didn't take her seriously, telling her that it was nothing and to just ignore it. She was eventually diagnosed with stage IIIA, ILC (ER/PR+), with 8 positive lymph nodes. She ended up having a bilateral mastectomy and pathology discovered DCIS in her other breast. She did chemo (AC-T), radiation, and hormone therapy and is now 8 years out with no recurrence.

Now here I am, in the same position my mom was in when she was younger, however I was fortunate enough to have an OBGYN who took me seriously and ordered an ultrasound. I basically caught it as early as I could have on my own. My genetic tests came back negative, so either it's not genetic or they just haven't identified the gene that caused our cancers. Nobody else in my family has had breast cancer except for a distant second cousin.

Anyway, because of my mom's experience and success in treatment, I was wondering if it's a good idea to be aggressive despite my oncotype score? I haven't received my score yet, but I'm determined to tackle this now so I have peace of mind knowing that I did everything possible. My surgeon thinks that my score will be around 25 just based on his experience with younger patients, but nothing is 100% definite yet.

Does anyone else have a similar experience and what did you end up doing?

Dx at 35. Ki-67: 5%. Mom Dx at 55, but genetics came back negative. Dx 10/2019, IDC: Tubular, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2-, Surgery 2/16/2020 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 3/26/2020 Femara (letrozole), Zoladex (goserelin) Radiation Therapy 4/26/2020 Whole breast: Breast
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Mar 10, 2020 05:37PM elainetherese wrote:

Hi!

I would wait for the Oncotype results and then decide. There's no way for you to know that your Mom's successful treatment was due to chemo. Moreover, the characteristics of your cancer could differ from hers, even if you're both ER+/PR+/HER2-.

I did chemo, but that's because it was indicated for me as a triple positive person. While chemo is doable, if your Oncotype score is low, I wouldn't bother.

Good luck!

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy; Lumpectomy (Right); Lymph node removal; Lymph node removal (Right): Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Mar 10, 2020 06:05PM KathyL624 wrote:

I was 38 and had a low oncotype (9) so chemo was not indicated. I would have done it in a heartbeat if there was any benefit but my MO showed me all the stats and it didn’t make sense

Dx IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Mar 10, 2020 06:55PM Sshibal wrote:

Elaine,

Ahh ok! I will wait and see. I guess I'm just scared of distant recurrence and get a little ahead of myself sometimes. I'm so ready to get this over with.


Kathy,

That's good to know that it's possible for the score to be so low. I always hear about people getting higher scores, so it makes it seem like chemo is inevitable. What treatments did you end up doing if you don't mind me asking? My mom's oncologist was shocked to hear that my surgeon was suggesting chemo because he wouldn't have gone that far without the oncotype results.

Dx at 35. Ki-67: 5%. Mom Dx at 55, but genetics came back negative. Dx 10/2019, IDC: Tubular, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2-, Surgery 2/16/2020 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 3/26/2020 Femara (letrozole), Zoladex (goserelin) Radiation Therapy 4/26/2020 Whole breast: Breast
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Mar 10, 2020 07:38PM minustwo wrote:

sshibal - it's usually good to stay with the original thread that you started - that way people can follow along with what's happening.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Mar 11, 2020 08:27AM Yogatyme wrote:

The purpose of the Oncotype score is to determine if chemo would be of any benefit. A low score indicates no added benefit so to put yourself through that seems unnecessary. Additionally, chemo also compromises your immune system, which puts you at risk for all kinds of “bugs”. It’s understandable that you want to do all you can to combat this beast, but your MO will recommend what is clinically appropriate without overdoing. Best wishes for you going forward

Yogatyme Surgery 3/2/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/12/2019 Mastectomy: Left, Right
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Mar 11, 2020 08:52AM alissat wrote:

I was diagnosed at 46. My oncotype was 13 & my ki67 was 30-40%. My MO said she could be convinced to go either way. Since my growth rate was high, I decided to do chemo. I decided to leave no stone unturned. Get all your numbers & listen to what your MO suggests. Best of luck to you

Dx 5/22/2019, IDC, Left, 1cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 6/27/2019 Lymph node removal; Lymph node removal (Left): Sentinel; Lymph node removal (Right): Sentinel; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 8/19/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/6/2020 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 2/13/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/1/2020 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Surgery 8/3/2020 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Surgery 11/1/2020 Reconstruction (Left): Fat grafting; Reconstruction (Right): Fat grafting Surgery 11/9/2020 Reconstruction (Left): Fat grafting; Reconstruction (Right): Fat grafting Surgery Lymph node removal (Left): Sentinel; Lymph node removal (Right): Sentinel; Mastectomy (Left): Nipple Sparing, Skin Sparing; Mastectomy (Right): Nipple Sparing, Skin Sparing; Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander
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Mar 11, 2020 08:53AM - edited Mar 11, 2020 08:53AM by alissat

This Post was deleted by alissat.
Dx 5/22/2019, IDC, Left, 1cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 6/27/2019 Lymph node removal; Lymph node removal (Left): Sentinel; Lymph node removal (Right): Sentinel; Mastectomy; Mastectomy (Left); Mastectomy (Right) Chemotherapy 8/19/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/6/2020 Whole breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 2/13/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/1/2020 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Surgery 8/3/2020 Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap Surgery 11/1/2020 Reconstruction (Left): Fat grafting; Reconstruction (Right): Fat grafting Surgery 11/9/2020 Reconstruction (Left): Fat grafting; Reconstruction (Right): Fat grafting Surgery Lymph node removal (Left): Sentinel; Lymph node removal (Right): Sentinel; Mastectomy (Left): Nipple Sparing, Skin Sparing; Mastectomy (Right): Nipple Sparing, Skin Sparing; Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander
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Mar 11, 2020 09:51AM KathyL624 wrote:

Shibal, I had a double mastectomy and have been doing monthly lupron shots with an A.I. I chose this more aggressive path because I was uneasy about the no chemo thing, to be honest. My MO thought Tamoxifen was the way to go, but I really wanted a more aggressive treatment, even if it meant only a small increase in benefit. It was really hard to wrap my head around the fact that chemo would do more harm than good for me.

Dx IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Mar 11, 2020 02:05PM salamandra wrote:

Hey Shiibal,

35 is considered young for breast cancer. Not crazy young like 25, but still young enough that is associated with more aggressive cancer *and* doctors might be more likely to recommend more aggressive treatment.

That said, now we have the technology to know with some level of certainty how aggressive any particular cancer is. So they don't have to treat based on general assumptions, but can catch an aggressive cancer in an older patient and vice versa.

I would second to wait for your oncotype. It's not even a pure question of risk/reward of chemo, chemo is actually less effective for certain types of cancers. The science for avoiding chemo in some cases is really sound - between the lower efficacy and the risks of chemo, there is statistical reduction in overall survival.

I would also just say to not be cavalier about the risks. Some women do very well with chemo and some have permanent side effects. I was lucky not to be in a position to have to decide, but I was pretty cavalier about tamoxifen. I've never ever had serious side effect issues from any kind of medication, including hormonal, and I assumed it would be fine. It turned out that my body will not tolerate it. I'm lucky that I had no permanent side effects. But it's just luck.

So I would not see chemo as a 'better safe than sorry' thing. It's really good medicine but only if it's appropriate for your condition.

That said, the waiting and not knowing is excruciating. At the beginning it felt like so much waiting, and always something more to wait for. Hang in there.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/17/2018 Lumpectomy; Lymph node removal Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Mar 23, 2020 02:36PM Sshibal wrote:

Hey everyone!

I just got back from my appointment and my oncotype score ended up being 16. She said I'm on the threshold of it either being not beneficial at all or being 1.6% beneficial.

Basically the scores are:

0-15 = not beneficial

16-20 = 1.6% beneficial

Overall the report says I have a 4% chance of distant recurrence (with an AI or tamoxifen) within the next 9 years.

My onco is recommending that I not do chemo, because the tumors were small (6mm and 3.5mm) and my lymph nodes were negative. However my high grade did worry her, but not enough to go through with chemo. Also she wants to induce menopause and give me letrozole for 5 years and then tamoxifen for 5 years after that. I will also get radiation for one month.


Does this sound like a good plan? Anyone with a similar experience?

Dx at 35. Ki-67: 5%. Mom Dx at 55, but genetics came back negative. Dx 10/2019, IDC: Tubular, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2-, Surgery 2/16/2020 Lumpectomy: Left; Lymph node removal: Sentinel Hormonal Therapy 3/26/2020 Femara (letrozole), Zoladex (goserelin) Radiation Therapy 4/26/2020 Whole breast: Breast

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