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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 08:10PM

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- (FISH) Surgery 2/17/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 25, 2020 08:35PM - edited Mar 25, 2020 08:37PM by Beesie

Here's the TAILORx study results:

Adjuvant Chemotherapy Guided by a 21-Gene Expression Assay in Breast Cancer

https://www.nejm.org/doi/full/10.1056/NEJMoa1804710

.

The chart that I included above is in the Supplementary Appendix, Figure S8.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Mar 25, 2020 10:01PM Sshibal wrote:

My onco got back to me tonight and said, "The most benefit from chemo is from menopause, therefore we are already being very aggressive by adding ovarian suppression with Zoladex"

Hmm :|

I think i might ask for a second opinion. I'm at one of the top cancer centers in the country btw, so I'm a bit nervous to ask.

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- (FISH) Surgery 2/17/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 25, 2020 10:03PM Sshibal wrote:

Beesie - Thank you for the link!

OnlyGirl - I'm curious to know what your score ends up being!

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- (FISH) Surgery 2/17/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 26, 2020 12:02AM Beesie wrote:

"The most benefit from chemo is from menopause, therefore we are already being very aggressive by adding ovarian suppression with Zoladex"

For younger women with lower range intermediate scores, that is the theory, but I don't know if it's been proven to be true.

Maybe the question to your MO, or to a second opinion MO, should be: "If my Oncotype score had been 24, what would you have recommended?", because the RSPC model gives you a recurrence risk that is equivalent to the average risk associated with an Oncotype 24 (for someone aged 50 and under).

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Mar 26, 2020 12:01PM OnlyGirlof5 wrote:

Sshibal - Beesie has given you some really good information to work with. I would not hesitate to obtain a second opinion just because you are at one of the best centers. I believe in trusting your medical team but also to be educated and aware of your options. When the rubber hits the road, it's your body and your health and your future health. If I am not intruding, where are you being treated?

I will update with my score as soon as I get it. The wait is driving me crazy!

Beesie - thank you again for this information. I have tagged this for when I have my next MO appointment (whenever the heck that will be!)


Age at dx: 50. Oncotype score 4. ICD (2 masses) and DCIS (1 mass); 1/3 nodes microscopically positive w/EE present. Radiation decision pending post 2/27/2020 surgery Dx 12/11/2019, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 12/11/2019, DCIS/IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 2/27/2020, IDC, Left, 1cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 2/27/2020 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 4/1/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 28, 2020 04:03PM Sshibal wrote:

Ok, so obtaining a second opinion is going to take some time. I called my hospital and I would have to make a separate appointment with another MO which could take 2 to 3 weeks. I'm scheduled for my first Zoladex injection on Monday and radiation in two weeks. I'm tired of waiting, so I'm going to keep all of my appointments for now. My mom is sending all of my records to her MO, so I'm hoping he can give me peace of mind on this. Also my MO said that the RSPC hasn't been formally tested, therefore it shouldn't be the sole reason to choose chemo. I kind of agree with her, there are more studies backing up the benefits of chemo-induced menopause and Zoladex/Goserelin + AIs than the RSPC score.

I'm a grad student right now, so I have access to medical journals. I found a few that have found induced menopause + AIs to be superior to chemo:

"Goserelin was equivalent to chemotherapy in terms of disease-free survival in women with hormone receptor-positive early breast cancer in the ZEBRA and IBCSG VIII trials. While adjuvant chemotherapy followed by goserelin was no better than chemotherapy alone in the overall trial population with hormone receptor-positive breast cancer (INT 0101 and IBCSG VIII), the addition of goserelin may have improved outcomes for a subgroup of women aged <40 years, possibly due to the induction of amenorrhoea in women who still remain premenopausal after chemotherapy."

"goserelin plus tamoxifen was superior to chemotherapy in women with hormone receptor-positive breast cancer in the ABCSG 5 trial and outcomes were improved by the addition of goserelin to chemotherapy with or without tamoxifen in the ZIPP trial."

"In conclusion, goserelin monotherapy has similar efficacy to adjuvant chemotherapy in pre- or perimenopausal women with early, hormone receptor-positive (node-positive or -negative) breast cancer. Furthermore, the addition of goserelin to adjuvant chemotherapy appears to offer an advantage over chemotherapy alone in younger patients, and fewer patients remain amenorrheic after goserelin therapy than after chemotherapy. Complete endocrine blockade provided by the addition of tamoxifen to therapy including goserelin appears to improve outcomes. Thus, goserelin offers a valuable addition to the currently available options for treating pre- or perimenopausal women with hormone therapy-responsive early breast cancer, particularly for women wishing to regain ovarian function after treatment."

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- (FISH) Surgery 2/17/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 28, 2020 04:59PM - edited Mar 28, 2020 05:19PM by JRNJ

only girl, tailorx is for node negative. The node positive swog study has much less data and is older postmenopausal women. Make sure they give you the right results. I got both reports because they submitted me as node negative first. There is an ongoing trial that won't be completed for several years. Node negative will show numerical results. Node positive reports will not due to lack of sufficient data. It just says “no apparent benefit". My oncotype was 15. I went for 3 opinions because I didn't want to look back with regret. I know you like your dr but I had 2 top docs, one at nci center and other at Sloan with opposite opinions. Sloan said yes do the chemo. But recommended cmf because I was in the gray area and it had less permanent side effects. Sloan also recommended ovarian suppression and AIs over tamoxifen. I also had extra nodal extension.Sorry it's a bad time for you to see drs. And your fills are getting delayed. I start radiation Monday but I think they will delay my ovary removal.

I think oncotype can be predicted mostly based on estrogen progesterone % ki67 and miotic score. But ignores node status, lvi and ee. I am a skeptic regarding oncotype for node positive and the Sloan dr confirmed all my thoughts.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 28, 2020 05:20PM Sshibal wrote:

OnlyGirl - Oops! Almost forgot to answer your question, I'm currently at Moffitt.

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- (FISH) Surgery 2/17/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 28, 2020 06:55PM OnlyGirlof5 wrote:

JRNJ - Thanks for all of that info. It is very helpful. I will definitely be having more conversations with my MO. Until I get my score, it's hard to think, contemplate or know what direction to take. I feel like my life has been on hold for the past 4 weeks with no end in sight! I am anxious to move to whatever the next step will be.

How did the CMF go? I see in your Dx info that you started in early December.

Age at dx: 50. Oncotype score 4. ICD (2 masses) and DCIS (1 mass); 1/3 nodes microscopically positive w/EE present. Radiation decision pending post 2/27/2020 surgery Dx 12/11/2019, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 12/11/2019, DCIS/IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 2/27/2020, IDC, Left, 1cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 2/27/2020 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 4/1/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 28, 2020 08:16PM buttonsmachine wrote:

Sshibal, many people have already given you excellent advice. I was diagnosed at age 32, and my oncotype score was also 32. I did a lot of chemo. But here's the thing: chemo did a lot of damage to my body, which I still dealing with, and chemo didn't actually help me a whole lot. My cancer actually grew on chemo a couple times, and hormone medicine was much more effective for me at controlling the cancer.

Apparently that happens with young women sometimes. Here is a bit of information about this from BCO:

https://www.breastcancer.org/research-news/2007101...

I still don't regret doing chemo in my case. But for you - it's possible that the chemo will do damage, and not significantly help you. It's your decision, and you need to feel comfortable with it. I'm just trying to offer another perspective. Best wishes to you.

Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole-breast Hormonal Therapy 5/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/27/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 5/1/2018 Lymph node removal: Right; Mastectomy Radiation Therapy 5/10/2018 External: Lymph nodes, Chest wall Hormonal Therapy 7/1/2018 Zoladex (goserelin) Chemotherapy 7/1/2018 Xeloda (capecitabine) Hormonal Therapy 1/15/2019 Aromasin (exemestane) Hormonal Therapy Faslodex (fulvestrant)
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Mar 29, 2020 01:39AM - edited Mar 29, 2020 01:47AM by JRNJ

only girl, yes first step is getting your oncotype score. You are highly er/pr positive. Do you know your ki67 and miotic score? If oncotype under 11 no chemo. Between 11 and 18 is gray area for node positive. But maybe make a dr appointment for second opinion now as it might take time to get one. I waited but was lucky got in quick with both Rutgers and Sloan. My goal was to be aggressive, I didn’t want to regret doing too little. I finished cmf 3/10. Yaa!! I had 8 treatments every other week. TC would have been 4 every other week. Cmf appears to be a Sloan only thing, not too many people doing it. Less side effects and risk of permanent side effects but still annoying. Luckily I was able to take leave from work. First week felt crummy especially day 3 and 4 more from Neulasta than chemo. Second week I was in pretty good shape. Functional and doing house projects most of the time. No nausea, but acid reflux and fatigue and chemo brain and severe sweating attacks. after 2 periods on chemo it put me into menopause. Lost 90% of hair but still have some, better than losing it all. My taste buds are shot and slowly returning. I recently have hand and arm pain at night but cmf not supposed to cause neuropathy like taxol. Might be lymphedema. I've been painting my house this week and I tend to over do it. I consider it a blip in time and it's over. But some people do have more serious side effects. No regrets doing chemo. I have anxiety that I should have done the stonger chemo or should have had more nodes removed. Glad I'm doing radiation but hope it goes ok.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes, Chest wall
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Mar 29, 2020 01:48AM buttonsmachine wrote:

PS others have probably pointed this out already too - but with the coronavirus situation escalating the way it is, the risks of being on chemo might be a bigger than the benefits, in your particular case. I found this article to be helpful:

www.fredhutch.org/en/news/cent...

My immune system did not rebound back into the normal range until about two years after my last chemo. Just my experience - some rebound quicker, some take longer.

Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole-breast Hormonal Therapy 5/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/27/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 5/1/2018 Lymph node removal: Right; Mastectomy Radiation Therapy 5/10/2018 External: Lymph nodes, Chest wall Hormonal Therapy 7/1/2018 Zoladex (goserelin) Chemotherapy 7/1/2018 Xeloda (capecitabine) Hormonal Therapy 1/15/2019 Aromasin (exemestane) Hormonal Therapy Faslodex (fulvestrant)
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Mar 29, 2020 02:23AM Sshibal wrote:

Buttons, thank you so much for your insight! I don't think I've really had the chance to talk to anyone else who has similar cancer characteristics. Is it pretty common for people in our shoes to get local recurrence? If you don't mind me asking, could you tell me a little bit about your journey? I'm very scared of recurrence in any form and my chest is tiny (like a AA) so my surgeon was concerned about the cancer reaching my chest wall.

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- (FISH) Surgery 2/17/2020 Lumpectomy: Left; Lymph node removal: Sentinel
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Mar 29, 2020 09:50AM OnlyGirlof5 wrote:

JRNJ- I read through both pathology reports: biopsy and post-surgical. I do not find any mention of either ki67 or miotic scores :( The only thing I could find is the T2N1 score which relates to my IIb stage. I feel like when reading others' posts, important information is missing :(

Here is what the report said for the biomarkers:

"Tumor size: Greatest dimension of invasive focus: 3.0 cm (additional foci
measure 1.0 cm and 0.8 cm)
Histologic type: Ductal
Histopathological grade (modified Bloom-Richardson): 2
Biomarker status:
Performed on previous biopsy, SU19-XXXXX, 1:00, and reported as follows:
ER: Positive, percentage and staining: 91-100%, moderate
PR: Positive, percentage and staining: 91-100%, strong
Her2 IHC: Negative (1+)
Biomarker status: (performed on previous biopsy, SU19-XXXXX, 12:30, and
reported as follows):
ER: Positive, percentage and staining: 91-100%, strong
PR: Positive, percentage and staining: 91-100%, strong
Her2 IHC: Equivocal (2+)
Her2 FISH: Negative (HER2:D17Z1 ratio = 1.14; HER2 copy number = 1.9)|
Extensive intraductal carcinoma (EIC): Not identified
Tumor extension: Not identified
Lymph-vascular invasion: Not identified
Microcalcifications: Present in DCIS and benign breast ducts/lobules"

And for the positive node:

"Sentinel lymph node status:
Positive sentinel lymph nodes/total sentinel lymph nodes: 1/3
Size of largest metastatic focus in sentinel lymph node: 0.3 cm
Extranodal extension: Microscopically positive"

Age at dx: 50. Oncotype score 4. ICD (2 masses) and DCIS (1 mass); 1/3 nodes microscopically positive w/EE present. Radiation decision pending post 2/27/2020 surgery Dx 12/11/2019, DCIS, Left, <1cm, Stage 0, Grade 1 Dx 12/11/2019, DCIS/IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 2/27/2020, IDC, Left, 1cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 2/27/2020 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 4/1/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 29, 2020 05:23PM - edited Mar 29, 2020 05:24PM by buttonsmachine

Sshibal, I am not really sure if it's common more common for younger women, but local recurrences can definitely happen. My situation was a bit unique maybe, because my "local recurrence" was probably caused by the biopsy needle dragging cancer cells into my skin/fat tissue. Some doctors thought it was more of a "persistence" than a true recurrence, but we can never know for sure. They treat it as a recurrence. In any case, the cancer started to spread out across my skin very rapidly once it got there, so it did cause a lot of trouble.

MD Anderson did a small study on needle seeding from biopsies, and it is rare, but my cancer fit the description for people who are at risk of having this problem. My cancer was very aggressive and fast growing. As I mentioned my oncotype was 32, but my Ki67 was something like 89%... just ridiculously high. Here's the link to that study: https://link.springer.com/article/10.1007/s10549-0...

Getting breast cancer is never what any of us wanted, but it seems like you are in a good situation under the circumstances. It's good that you are at a top cancer hospital to start out with - I didn't start out at one, but I am at one now. It makes a big difference, in my opinion.


Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole-breast Hormonal Therapy 5/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/27/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 5/1/2018 Lymph node removal: Right; Mastectomy Radiation Therapy 5/10/2018 External: Lymph nodes, Chest wall Hormonal Therapy 7/1/2018 Zoladex (goserelin) Chemotherapy 7/1/2018 Xeloda (capecitabine) Hormonal Therapy 1/15/2019 Aromasin (exemestane) Hormonal Therapy Faslodex (fulvestrant)
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Mar 29, 2020 07:12PM JRNJ wrote:

only girl, a little surprising but I read not all places do ki67. My second and third opinions looked at them. Ironically miotic was low which is what Rutgers looked at and ki67 was slightly elevated which is what Sloan looked at. But I think these variables will be reflected in your oncotype. My nodes were similar, 3 mm and 2 mm. My tumor was 2.4 cm with additional focus of 2mm and extra nodal extension was 3 mm. Your additional foci is larger. Also I have ilc which is supposed to be slower growing but harder to detect, but the pleomorphic thing i have is more aggressive. Keep us updated when you get your score.

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, ER+/PR+, HER2- Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Surgery 9/24/2019 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/2/2019 CMF Radiation Therapy 3/30/2020 Whole-breast: Breast, Lymph nodes, Chest wall

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