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Topic: Chemo benefit (%) based on your Oncotype DX score

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

Posted on: Dec 6, 2019 07:16PM

MikaMika wrote:

Hello, just got my results from the Oncotype DX test. Score =11, chemo benefit <1%. Could you please share your results and your decision with chemotherapy for ILC? I'm 38 y.o., had BMX on Halloween. My oncologist told me no chemo, but he willing to give me 4 rounds of Taxotere (maybe I'm wrong with the drug name) just to be sure we did everything.

What was your decision based on the test results?

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Dec 17, 2019 03:56PM thisiknow wrote:

Your info is most helpful, Beesie. It just seems there's too little difference in benefits to choose one AI over another. So should I choose one based on what SE's to avoid instead?

Could there be benefits to using one AI over another in the particular case of DCIS ...or IDC ...or ILC ...or other breast cancers.


Age 72 @dx - Oncotype 4 & 15 Dx 7/14/2019, DCIS/IDC, Both breasts, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 9/10/2019 Lumpectomy: Left, Right; Lymph node removal: Sentinel Radiation Therapy 10/28/2019 Whole-breast: Breast Hormonal Therapy 12/18/2019 Arimidex (anastrozole)
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Dec 17, 2019 08:08PM - edited Dec 17, 2019 08:13PM by mac5

Mika, for another comparison...

My Oncotype Score is 8. My Recurrence % is 5%. I was told the chance of chemotherapy working on ILC was less than 1%.

The second part of the story is my MO told me the TailorX Study eliminated women who had a recurrence of BC and those whose Tumor was greater than 2cm. I'm not “Staged" at Metastatic because there is no observable connection between my freakin huge tumor and the Cancer in my chest wall, but the assumption is its the same type.

Because I had such terrible SE's from the AI's the first time, I decided that I would only accept Chemotherapy as neoadjuvant therapy. She discussed Carboplatin, but we decided on CMF for 3 Treatments. I'll have the 3rd round December 19th and another Breast MRI on December 27th to determine if chemo has been effective. If it has, I'll have MX and probably Radiation. If it hasn't worked, then President Radiation then MX.

The AI Treatment was prescribed for a year and then MX. My tumor was growing quickly because it was visible to me. I wasn't willing to wait.

The CMF is working so far. Minuscule effect so far but effect

Let me add, I’m 69 years old with ILC. My first diagnosis was IDC and DCIS at age 60. My Recurrence Rate then was 5%.

Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/5/2019, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to lungs, Grade 1, 1/1 nodes, ER+/PR+, HER2- Chemotherapy 11/6/2019 CMF Radiation Therapy 6/5/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Dec 17, 2019 08:23PM MikaMika wrote:

mac5,

Thank you for sharing your experience.

Unfortunately, two oncologists that I spoke to don't prescribe CMF regime anymore. So, light chemo is out of game.

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Dec 17, 2019 08:44PM mac5 wrote:

Mika I had Abraxane and FAC the first time around. The CMF is harder

Dx 7/20/2010, DCIS/IDC, Left, 2cm, Stage IIIB, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Dx 9/5/2019, ILC/IDC, Both breasts, 6cm+, Stage IV, metastasized to lungs, Grade 1, 1/1 nodes, ER+/PR+, HER2- Chemotherapy 11/6/2019 CMF Radiation Therapy 6/5/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement Chemotherapy Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Dec 17, 2019 11:38PM MikaMika wrote:

mac5,

I'm sorry, I thought it is the lightest possible chemo regime in terms of side effects. It seems like I was wrong.

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Dec 18, 2019 05:56AM Brilee76 wrote:

My MO had the Endopredict test done rather than Oncotype. My score was 4.5 which is high risk. My MO said I had a 28% chance of recurrence. Chemo would lower that chance to 15% so my MO suggested it. I had 4 rounds of TC.

~Bridget (BRCA2, 7/1/19-Lupron, 12/30/19-Zometa) Dx 5/16/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Hormonal Therapy 6/30/2019 Hormonal Therapy 6/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/5/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 9/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/15/2019 Femara (letrozole) Hormonal Therapy 12/29/2019 Surgery 1/19/2020 Prophylactic ovary removal
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Dec 18, 2019 11:11AM MikaMika wrote:

Brilee76,

Thank you for your response!

May I ask you, what was you Ki67? Did you have intravascular invasion?

By "reccurence" you mean distant or local?

Thank you!


Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Dec 18, 2019 11:58AM JRNJ wrote:

Brilee76, It’s so frustrating how different drs do different things leaving me constantly questioning if I’ve done enough. My dx looks like yours. I asked about starting hormone therapy early and I was told it waits until the end. And I had to fight for chemo due to oncotype. My ki67 is 18. Miotic is 1. Is yours higher

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, 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 Hormonal Therapy 6/4/2020 Aromasin (exemestane) Hormonal Therapy 8/6/2020 Arimidex (anastrozole) Surgery 8/25/2020 Prophylactic ovary removal
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Dec 18, 2019 03:16PM Brilee76 wrote:

Here are my test results:

EndoPredict Breast Cancer Gene Expression Profile
- EPClin Risk Score: 4.5 (high risk)
- 12-Gene Molecular Score: 7.9
- Tumor Stage: pT2
- Nodal Status: pN1mi


RESULTS:
Breast, left, 1 o'clock, ultrasound-guided core needle biopsy
Tumor type: Breast carcinoma
Primary vs. Metastatic: Primary
ESTROGEN RECEPTOR: POSITIVE
- Nuclear Staining: 85%
- Average intensity of staining: strong
PROGESTERONE RECEPTOR: POSITIVE
- Nuclear Staining: 75%
- Average intensity of staining: strong
KI-67: LOW
- Nuclear Staining: 8%
HER2 PROTEIN EXPRESSION: NEGATIVE (Score 1+)
- Staining pattern: Incomplete membrane staining that is
faint/barely perceptible and in greater than 10% of tumor cells


- Lymph Nodes
- Regional Lymph Nodes: Involved by tumor cells
- Number of Lymph Nodes with Macrometastases: 0
- Number of Lymph Nodes with Micrometastases: 1
- Size of Largest Metastatic Deposit (Millimeters): 0.26 mm
- Extranodal Extension: Not identified
- Number of Lymph Nodes Examined: 3
- Number of Sentinel Nodes Examined: 3
- Pathologic Stage Classification (pTNM, AJCC 8th Edition)
- TNM Descriptors: Not applicable
- Primary Tumor (pT): pT2
- Regional Lymph Nodes (pN)
- Modifier: (sn): Only sentinel node(s) evaluated.
- Category (pN): pN1mi
- Distant Metastasis (pM): Not applicable - pM cannot be
- determined from the submitted
- specimen(s)


The micrometastases was found on the outside of the lymph node rather than inside so no intravascular invasion per my MO.

~Bridget (BRCA2, 7/1/19-Lupron, 12/30/19-Zometa) Dx 5/16/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Hormonal Therapy 6/30/2019 Hormonal Therapy 6/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/5/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 9/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/15/2019 Femara (letrozole) Hormonal Therapy 12/29/2019 Surgery 1/19/2020 Prophylactic ovary removal
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Dec 18, 2019 03:21PM Brilee76 wrote:

I also have a BRCA2 mutation as does my mother. It is not the known mutation. My mother had 2 different types of breast cancer in each breast last year. She rang the cancer free bell last December (2018).

~Bridget (BRCA2, 7/1/19-Lupron, 12/30/19-Zometa) Dx 5/16/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Hormonal Therapy 6/30/2019 Hormonal Therapy 6/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/5/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 9/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/15/2019 Femara (letrozole) Hormonal Therapy 12/29/2019 Surgery 1/19/2020 Prophylactic ovary removal
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Dec 18, 2019 03:37PM MikaMika wrote:

Brilee76,

Thank you so much for the update!


Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Dec 18, 2019 03:37PM Brilee76 wrote:

MikaMika - I'm gonna guess she meant distant since I have no breast tissue left?

~Bridget (BRCA2, 7/1/19-Lupron, 12/30/19-Zometa) Dx 5/16/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Hormonal Therapy 6/30/2019 Hormonal Therapy 6/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/5/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 9/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/15/2019 Femara (letrozole) Hormonal Therapy 12/29/2019 Surgery 1/19/2020 Prophylactic ovary removal
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Dec 18, 2019 04:01PM Beesie wrote:

Brilee, even after a MX, a local recurrence remains possible. It's impossible for the surgeon to scrape away every particle of breast tissue, so either a recurrence or even a new primary breast cancer could still develop after a MX. Usually if this happens, the cancer develops against the chest wall, or up against the skin.

Generally for early stage breast cancers the local recurrence risk after a MX is about 1% -2% but the risk could be higher for more aggressive cancers or if the surgical margins are close or if the cancer is node positive and/or very large.

That said, both the Oncotype test and EndoPredict specifically measure distant recurrence risk. I know that the Oncotype test does not provide any information at all about local recurrence risk and I believe this is also the case with EndoPredict.

Here is a copy of an EndoPredict report that I found on their website. I've circled in red where it indicates that the results are specific to distant recurrence.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 18, 2019 04:06PM Brilee76 wrote:

Thanks Beesie! :) I see why you get so many compliments on your posts.

~Bridget (BRCA2, 7/1/19-Lupron, 12/30/19-Zometa) Dx 5/16/2019, ILC, Left, 3cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- Hormonal Therapy 6/30/2019 Hormonal Therapy 6/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 8/5/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 9/17/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/15/2019 Femara (letrozole) Hormonal Therapy 12/29/2019 Surgery 1/19/2020 Prophylactic ovary removal
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Dec 18, 2019 04:08PM MikaMika wrote:

Beesie, Brilee76,

Thank you so much!





Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Dec 18, 2019 04:27PM Spoonie77 wrote:

Following along. I had not heard of the Endopredict test at all until this thread. I had a Oncotype and Mammoprint done originally due to wanting to be sure of my decision.

Anyone know the differences between these tests? Do they all test the same thing but done by different companies? Thanks in advance.

"Spoonie" who entered BC World @ 41. DXd w/MS & Thyroid Cancer @42. Treatment: LX/SLNB/RADs. Plan A: 5mg Tamox = 0 QOL. Plan B: OS/AI = Rare allergy to OS meds. Plan C: Only option left,  Diet & Exercise. PS: Not a dr, just a Googler. Dx 7/20/2018, IDC, Left, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Dx 8/30/2018, DCIS, Left, 1cm, Stage 0, Grade 2 Surgery 8/30/2018 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/1/2018 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 3/30/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/2/2019 Zoladex (goserelin)
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Dec 21, 2019 10:57AM momand2kids wrote:

Mika

for what it is worth- I had an oncotype in the "gray area" which was, as the time between 18-30-- I think mine was in the mid 20's-- did 4 rounds of AC only with a lumpectomy radiation and an AI and ovarian suppression (I could not take tamoxifen). As Beesie says, it is all about your own tolerance. At the time of my dx, A/C was the standard-- I was heartened to see in the Tailor x trial that my numbers would have warranted chemo--- reaffirmed my decision. Also, last on visit they ran the numbers for the recurrence and mine were low--which also gave me reassurrance that I did the right thing-- it is hard to know in the moment--but you have data, doctors and your own gut feeling about what will work for you---- remember, nothing is permanent, you could start then stop-- try one drug, then move to another-- there are many more options available now---- best of luck!


Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/24/2008 Lumpectomy: Right Chemotherapy 1/15/2009 Adriamycin (doxorubicin) Radiation Therapy 3/22/2009 Breast Hormonal Therapy 6/14/2009 Femara (letrozole)
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Dec 21, 2019 07:58PM MikaMika wrote:

momand2kids,

Thank you so much for your response and support!

Dx 8/2019, ILC, Stage IIA, ER+/PR+, HER2-
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Dec 24, 2019 07:07AM windingshores wrote:

MikaMika, just want to say that I ended up getting 4 opinions until I felt comfortable. A lot of my testing was "discordant" and even contradictory. I would just suggest that you keep going, getting opinions and info from docs, until you feel safe about your decision. My last doc even retested some things.

Oncotype 8, but grade 2 or 3 (depending on hospital), ki67% 18, focal LVI (lyphatic), ER/PR+ and HER2- (had a positive, negative and equivocal and last doc did a retest with more cells)

Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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Dec 24, 2019 05:19PM Whatjusthappened wrote:

I've seen a lot of mention of the RSPC calculator on this thread. Is that something that is new? I had my Oncotype done about 9 months ago and have never heard of the RSPC calculator. My Oncotype was a 13 with a recurrence score of 13% as well. No number given for chemotherapy benefit, only "no apparent benefit," because of the node positive status (which I also just learned on this thread from JRNJ).

I've often wondered about the accuracy of the Oncotype for my individual situation. My understanding is that the Tailorrx study excluded tumors over 2cm. Mine was multifocal with the largest at 4 cm. Also, as ShetlandPony noted, is is not clear how well it predicts recurrence in ILC vs IDC. I was 48 at the time of diagnosis.

I wonder if it is worth asking my MO to run the calculator at this point? I remember him being a bit puzzled by my results (he thought the recurrence rate should be lower), and it seems like he would've run it then had he known about it at the time.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Dec 24, 2019 07:02PM Beesie wrote:

The Oncotype RSPC model is not new - the first mention of it on this site was in 2011 - but it seems to be very rarely used. I don't know why that is. It takes 2 minutes to run, and doesn't it make sense to try to make the Oncotype results more specific to the individual?

The report that everyone receives with their Oncotype score gives the same % metastatic risk to everyone who has the same score - well, there is the node-negative version and the node-positive version, and there is now a 50 and under score vs. an over age 50 score. But if two people both are node-negative and both have a 29 score, and one is aged 65 with an 8mm grade 1 tumor and will be taking an AI, and the other is aged 51 with a 3.8mm grade 3 tumor and will be taking Tamoxifen, isn't it reasonable to assume that the metastatic risk may be different for these two patients? That's what the RSPC would tell us.

Whatjusthappened, at this point it's too late to change your treatment plan so any new information might just cause you concern. Is that worth it to you?


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Dec 24, 2019 08:40PM Whatjusthappened wrote:

Bessie, that's a good point- I don't know if it would be worth it not. I have a science background and am the kind of person that likes to have all the information. It bugs me that there is more information I could've gotten, irrational as that may be. I certainly wouldn't go back and push for chemo or anything, but that knowledge could be helpful for future decisions (whether or not to stay on AI's for instance).



BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Dec 24, 2019 08:54PM - edited Dec 24, 2019 08:59PM by JRNJ

What just happened also note Tailorx is a node negative study. Node positive is still ongoing. I got both reports because they made a mistake and submitted me as negative. But if it makes you feel better the Rutgers dr said no chemo for dx like ours even with node positive. But I was determined to do chemo and Sloan said yes. I agree that another report might just worry you if there is no chance of changing treatment. Unless chemo is a possibility. It's really not perfect science either way. I looked up trends data and was surprised to see the metastatic rate has not changed at all In 50 years. And people with chemo still go metastatic. So it may just be predetermined. And I'm a little miserable now going through it. I’m an OCDengineer and still have a hard time believing the “limited” data studies. I'm going to get ovaries removed too. How are you feeling after that? Hot flashes?

Pleomorphic Multifocal, Extra nodal Extension, Lymphovascular Invasion. TEs removed due to infection Dx 8/15/2019, LCIS, Right, 6cm+, Grade 3, ER+/PR+, HER2- Dx 8/15/2019, ILC, Right, 2cm, Grade 3, 2/5 nodes, 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 Hormonal Therapy 6/4/2020 Aromasin (exemestane) Hormonal Therapy 8/6/2020 Arimidex (anastrozole) Surgery 8/25/2020 Prophylactic ovary removal
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Dec 24, 2019 09:49PM Whatjusthappened wrote:

JRNJ, I think with your diagnosis I would've pushed for chemo too, but I'm sorry that you're having a hard time going through it. How long do you have left? I don't regret not getting it, since almost everything I've read leads me to believe it wouldn't be that effective anyway.

Having the ovaries removed was not too bad. I did get slammed into menopause, and started Arimidex a week later. The combination of those two things has been hard. The hot flashes were pretty bad, along with some other SE's. I'm on a break from the Arimidex right now, so the hot flashes are still there but not as intense.


BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)

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