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Topic: Oncotype score of 22

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Mar 19, 2019 03:40AM

Conjuring1 wrote:

Hi,

I had a bilateral mastectomy on 1/16/19, stage 1 invasive in left and stage 0 dcis in right.

My Oncotype score came back as 22. My oncologist recommended chemo and HT since I am under 50 (I’m 44). After almost an hour of me crying she finally told me that instead of chemo I could do ovarian suppression or have my ovaries removed. I’m definitely leaning towards the latter as I really don’t want to do chemo.

Has anyone been in the same situation (stage, score and age). What did you choose and how are you feeling about it now?

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Mar 21, 2019 03:46AM - edited Mar 21, 2019 03:49AM by Toyamjj

Hi,

I was diagnosed right after Christmas and had my lumpectomy with two nodes removed on Jan 30th. I am 44 yrs old stage 2 and thankfully it has not spread, my score is 22. I began crying when she told me my score because at the time I thought that my score was extremely high. As I was crying I said I don't want to do chemo and she then said the she was not recommending chemo and that I was in that "grey area" and that she wants to suppress my hormones. She put me on lupron shots monthly and once radiation in completed ill take Anastrozole. I asked her "why not just remove my ovaries" and she said because once thats done there is no going back and she'd like to see how I do on the ovarian surpression pills first. Im 6 days into radiation Therepy and so far so good, Im doing a total of 20. I also had my first lupron shot on March 1st but I still ended up having my period this month so I plan on updating my dr when I see her this Friday.

What made you decide to get a mastectomy as oppose to a lumpectomy?

DX at age 44 Oncotype 22 Dx 1/4/2019, Right, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/31/2019 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 3/1/2019 Radiation Therapy 3/13/2019 Hormonal Therapy 5/1/2019 Arimidex (anastrozole)
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Mar 21, 2019 03:53AM Conjuring1 wrote:

Hi Toyamjj,

I decided to do a bilateral mastectomy because I did not want to take the chance of it coming back and having to go through all of this again. At the time we only knew that I had cancer in the left breast, luckily I went with the bilateral because the pathology showed that I also had it in the right breast and that it was just starting.

Is yours Estrogen and Progesterone positive? Both of mine are and that’s why I was leaning towards to ovary removal (since the shots basically so the same thing, just over a longer period of time).

I am getting a second oncology opinion next month as well

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Mar 21, 2019 04:21AM Toyamjj wrote:

Im estrogen receptor positive her2-. Ive suffered from heavy periods so ovary removal sounded like a good option to me but sine my dr recommended taking the meds first I guess I didn't really question it. Please keep me posted and ill do the same

DX at age 44 Oncotype 22 Dx 1/4/2019, Right, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/31/2019 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 3/1/2019 Radiation Therapy 3/13/2019 Hormonal Therapy 5/1/2019 Arimidex (anastrozole)
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Mar 21, 2019 04:28AM Conjuring1 wrote:

I will be taking the hormone pills for 10 years as well, the ovary removal is an extra precaution instead of chemo?

Will do!


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Mar 21, 2019 07:07AM - edited Mar 21, 2019 07:08AM by Oya80

My oncotype score is 20, so at 38yo I was in a gray area too. I was adamant that I wouldn't do chemo, so my doc suggested lupron & anastrozole. I've been on that regimen since January. While I feel a bit out of sorts due to being in chemical menopause, I'm tolerating it well for the most part.

#slaycancer - Dx @ 38, first felt lump 1 yr prior (6/2017) while pregnant. OncotypeDx 20. (According to new staging guidelines 2018, only stage 1A!) Tx-- Ovarian suppression w/AI Dx 10/15/2018, IDC, Left, 3cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 11/13/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 1/11/2019 Hormonal Therapy 1/18/2019 Arimidex (anastrozole)
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Mar 21, 2019 01:40PM Conjuring1 wrote:

Hi Oya80,

What prompted you to go with the injections instead of the ovary removal?

Are you also doing the hormone pills? My oncologist suggested I do both if I didn’t do chemo

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Mar 21, 2019 02:51PM edwards750 wrote:

Oncologists insist the survival rates for lumpectomy and MX are the same. Hard to believe but the cancer can come back on the MX scar area. It did for my sister. To be fair there are other factors involved like the type of BC. I had IDC and my sister had ILC. My BS was all about saving the breast and while my scar isn’t pretty he said I had a wimpy cancer whatever that is. I think that was his effort to keep me from panicking.

I think you just do whatever you feel comfortable with.

Diane

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Mar 28, 2019 06:51AM Oya80 wrote:

Sorry haven't logged on in a bit...

Conjuring, I'm still considering ovary removal. Everything happened so fast that I didn't want another surgery. The injections aren't bad.

#slaycancer - Dx @ 38, first felt lump 1 yr prior (6/2017) while pregnant. OncotypeDx 20. (According to new staging guidelines 2018, only stage 1A!) Tx-- Ovarian suppression w/AI Dx 10/15/2018, IDC, Left, 3cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 11/13/2018 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 1/11/2019 Hormonal Therapy 1/18/2019 Arimidex (anastrozole)
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Mar 28, 2019 10:51AM - edited Mar 28, 2019 10:55AM by kec1972

Hi there, I'm 46 and also had stage 1 IDC. My Oncotype score was 21. My oncologist said the chemo choice was up to me. I decided against it, as I just didn't think I could justify the toxicity of the chemo drugs. I did lumpectomy and radiation, and will be starting tamoxifen soon. I’m keeping my ovaries. My onc said removing them would make me”extremely unhappy” lol

Dx 12/17/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 1/7/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/20/2019 Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 28, 2019 01:20PM Conjuring1 wrote:

Oya80,

I had the opposite thought. I personally would rather have the surgery and get it done and over with instead of a shot every month. I’m worried that next year, when my out of pocket resets that pharma will raise the prices to a ridiculous amount. And since I’ve already hit the max this year, might as well just have the surgery since it won’t cost anything.

I am getting a second opinion next week though ..


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Mar 28, 2019 01:22PM Conjuring1 wrote:

kec1972,

Wow, she didn’t suggest removal or suppression?


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Mar 28, 2019 02:03PM - edited Mar 28, 2019 02:12PM by kec1972

No he didn't. He just recommended tamoxifen for 5 years, possibly 10. Maybe because all my genetic testing came back negative?

Dx 12/17/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 1/7/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/20/2019 Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 28, 2019 02:05PM Conjuring1 wrote:

kec1972,

I’m definitely asking the oncologist when I go for my second opinion about this option...thank you

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Mar 28, 2019 02:09PM - edited Mar 28, 2019 02:12PM by kec1972

Please keep us posted! I have a few friends who have also gone through BC in their 40's and I know ovarian suppression/removal was never discussed. I don't know why for some women it is recommended and for some it is not

Dx 12/17/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 1/7/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/20/2019 Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 28, 2019 02:13PM Conjuring1 wrote:

kec1972,

Yes I will be on Tamoxifen as well. Because my Oncotype score was 22, she initially recommended chemo. After my severely adverse reaction to that recomshe said she would be comfortable with ovary suppression or removal (since my BC is hormone positive).

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Mar 28, 2019 08:50PM Salamandra wrote:

No suppression is necessary for tamoxifen.

But studies have shown that ovarian suppression/removal plus AI are more effective for preventing recurrence of certain types of cancers. My understanding is that doctors are more likely to recommend it as a first line of defense for progesterone negative cancers, for example, or more advanced stage. But for women who cannot or will not take that option, tamoxifen is still a lot better than nothing.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 31, 2019 02:54PM momand2kids wrote:

Hi

I ended up with a lumpectomy and chemo and lupron-- no one thought I should remove my ovaries-- I honestly found the lupron more difficult than the chemo!!! But this is such a personal decision and you can only do what you can do with the information that you have. I hope you can come to a decision that gives you peace


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Apr 1, 2019 10:39PM PatRN10 wrote:

Hi,

I was a bit older than you at diagnosis (52) but Oncotype 23. I decided to do chemo as my ER was only 25%.

I did OK until after the last treatment when I did not take Neulasta and was hospitalized with pneumonia.

Do what feels right to you on advice of your medical team. I could not tolerate the AI's so feel good about my choice despite the side effects.

Pat: Dx age 52, ER 25%, PR 25% , Oncotype score 23 Dx 4/9/2015, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 5/15/2015 Lumpectomy: Right Radiation Therapy 7/19/2015 Whole-breast: Breast Chemotherapy 10/8/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 10/29/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 11/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 12/10/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Apr 2, 2019 12:24AM kec1972 wrote:

Pat, did you discontinue AI’s? I’m due to start tamoxifen soon but have decided I will not continue if it ruins my QOL

Dx 12/17/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 1/7/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 2/20/2019 Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 2, 2019 05:11AM Conjuring1 wrote:

I know this sounds and is actually extremely vain, I’m too scared of losing my hair to do chemo.

I had my second opinion today and she was adamant about me doing chemo...I just can’t do it. It’s only giving me an extra 3.5-4% right

I think I’m going to move forward with ovarian removal and AI for 10 years.

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Apr 2, 2019 05:44AM Meow13 wrote:

Conjuring, it is ok, you do what feels best for you. I was 53, post menopausal er+ pr- grade 2, stage 1, my oncodx came back 34. I chose not to do chemo, I did 4 years AI drugs.. Going on year 8 cancer free.

I understand your fears of chemo I too had the same reaction.

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Apr 2, 2019 06:31PM Conjuring1 wrote:

Thank you, Meow13.

I’m glad you’re 8 years cancer free!

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Apr 15, 2019 09:57PM etnasgrl wrote:

I was 41 when diagnosed and had the Oncotype Test done in 2015. My score was 27. Back then, that was considered in the intermediate zone. Given my age, my oncologist wanted me to do chemo. I declined. 
My reason? Chemo comes with a whole array of side effects. Some can be pretty severe and life long. My oncologist was honest with me and told me that he didn't know if the benefits of chemo outweighed the risks. I just could not see putting my body through all of that, if I didn't know for certain that it was receiving some benefit. 
I moved forward with radiation, followed by Tamoxifen. Tamoxifen created havoc in my body. In 2017, I had a hysterectomy. (But left my ovaries.) In 2018, I almost died from an ovarian torsion and had my left ovary removed. Then this year, I had my remaining ovary removed after a softball size cyst was discovered. Both the torsion and the cyst were caused by Tamoxifen.
I am now 44 and in surgically induced menopause. Not fun! 

Anyway, sorry for rambling. Just wanted to share my decision with you and let you know that I have zero regrets about not doing chemo. I wish you all the best. Make the decision that you feel is best for you and don't look back! Smile

Diagnosed at 41. Dx 11/5/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 12/9/2015 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 1/12/2016 Whole-breast: Breast Hormonal Therapy 2/17/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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