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All TopicsForum: High Risk of Recurrence or Second Breast Cancer → Topic: Long term "high oncotype test" survivors

Topic: Long term "high oncotype test" survivors

Forum: High Risk of Recurrence or Second Breast Cancer — Managing high recurrence risk of developing a second breast cancer.

Posted on: Aug 8, 2008 12:54PM

1OUgirl wrote:

Is there any long term survivors who have had a high oncotype score.  I know that this test is relatively new but I also know that it has been on the market at least 4 years.  So I know that "long term" regarding this test isn't very long term.  I had it done 3 years and 4 months ago.  My oncotype score was 52.  My onc told me that the test had been on the market only about 8 months.  I'm just curious about others who have had an extremely high score and are still clear (so to speak).  I am doing great with no signs of any kind.  Is there alot of others out there?  By the way, I love this site.

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Apr 18, 2017 10:30PM edwards750 wrote:

Thanks Margo. I didn't know what it was called. I'm not surprised the test isn't covered. I was blessed my Oncotype test was paid for by BC/BS. No way could my DH and I afforded $5k. Genomic Labs who conducted my test did say if insurance didn't pay they would bill me on a sliding income scale.

Given the mountain of bills already incurred even that would have been tough to handle. We have a large deductible like 5k that we met in 2 months. After that 100% thankfully because I had 33 radiation treatments that were paid. I know that would have cost us 30-40k.

Insurance companies need to do a better job researching the true costs of diseases like cancer. They resist and ultimately refuse to pay for anything that in their minds is not a routine test or standard of care. In the long run approving tests like the Oncotype saves them money. Chemotherapy is pricey. Maybe one of these days..

Diane


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Apr 18, 2017 11:50PM QuinnCat wrote:

As I recall, Genomics gives a 2% reduction in recurrence if using AIs versus Tamoxifen. That was in 2012 when I had the test.

As far as BCI, someone on BCO mentioned their insurance wouldn't cover, but BCI didn't charge her, so they must have some program for those whose insurance doesn't cover them. Worth talking to them about that. I'm coming up on 5 years of AI in August, so will be researching myself. My MO was not promoting the test in 2015, but we haven't spoken of it since

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May 29, 2017 04:33PM jgio2960 wrote:

hi,

Hope you don't mind me asking now since so much time has passed but how are you doing ? Your story is very similar to my moms. Doctors weee almost positive no lymph involvement but unfortunately there was a micromet as well.


Dx 4/2017, IDC, Right, 1cm, Stage IB, Grade 2, 1/2 nodes, ER+/PR+, HER2-
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May 31, 2017 08:55AM edwards750 wrote:

Not at all. I am 6 years out this August. I am doing fine thanks for asking. Just had a mammo last week. All clear.

We have a support group at my church and one of our group is a radiologist. I asked her if I should be encouraged despite the micromet if I had a low Oncotype score. She said absolutely.

According to Genomic Labs who conducted the Oncotype test a micromet is considered to be no lymph node involvement. At least it was when I had the test done 5 years ago.

I did ask my ONC why they didn't check other lymph nodes and she said no point given it was a micromet however, had I not had the micromet my radiation treatment would have consisted of 2x a day for a week vs 33 treatments. My Rad ONC said the "express" treatment would have been risky.

Keep the faith and keep us posted on Mom.

Diane

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May 31, 2017 11:41AM - edited May 31, 2017 09:10PM by QuinnCat

Score 39 - 5.5 years out. Did max chemo, then some more.

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May 31, 2017 04:31PM Meow13 wrote:

score 34, 5.5 years out didn't do the chemo just AI.

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May 31, 2017 09:23PM ThinkingPositive wrote:

didn't have the oncotype test. Did chemo and ai. Had a node positive and was grade 3 - this the reason the dr saying doesn't matter your doing chemo so why wait for results. Now I am kicking myself for not having Oncotype done anyway. Sept will be three years fromm diagnosis. I can only assume oncotype score would have been on the higher side.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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May 31, 2017 09:24PM - edited May 31, 2017 09:24PM by ThinkingPositive

This Post was deleted by ThinkingPositive.
Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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May 31, 2017 11:37PM Meow13 wrote:

Thinkingpositive, you made it through the treatment I wouldn't look back. Glad you are ok.

I was told I was crazy not to do chemo, but when it came down to it I just couldn't take it. I think most are more afraid of the cancer than the chemo but it wasn't that way for me.

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Jun 11, 2017 07:44AM - edited Jun 11, 2017 07:44AM by Loral

Meow... I thought the same as you...after surgery I choose to take only Tamoxifen, no chemo, no radiation...it will be 5 years in October and I still take Tamoxifen.

Oncotype DX 34....When NOTHING is sure, EVERYTHING is possible ,so NEVER, EVER, GIVE UP HOPE!! Dx 9/11/2012, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR-, HER2- Surgery 10/8/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 12/12/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 11, 2017 02:49PM QuinnCat wrote:

Loral - looking at your path stats, hard to believe you were Grade 1!

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Jun 11, 2017 04:52PM Meow13 wrote:

Loral, happy to hear you are NED. I am doing very well despite the high risk oncodx score. I am off my AI drugs now feeling better.

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Jun 11, 2017 06:13PM skelly wrote:

Just wanted to mention something that everyone is aware of, but it makes a big difference in talking about onco scores. In the past few years, the scale has changed from 1-100, to 1-50. If we could give a "20 out of 100" or "30/50" it would be really helpful to at least me, and possibly others. Just a thought.

She does not get eaten by the eels, at this time. Dx 4/24/2017, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 5/17/2017 Lumpectomy: Right; Lymph node removal: Sentinel
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Jun 11, 2017 06:55PM - edited Jun 11, 2017 07:03PM by BarredOwl

Hi skelly:

Re: "In the past few years, the scale has changed from 1-100, to 1-50."

I don't agree with that statement, and would recommend that you check the content of your Oncotype report (see the printed matter above the first graph) and discuss it with your Medical Oncologist.

Meanwhile, Genomic Health (the sole commercial provider of the test) has done a complete overhaul of its website in the last month or so, so it should be up to date regarding the scale. The site clearly indicates that there has been no change in the scale: Recurrence Scores continue to be from 0 to 100 as explained here:

>>> Genomic Health: http://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/interpreting-the-results

>>> "Genomic Health makes understanding Oncotype DX Breast Recurrence Score test results as easy as possible. A detailed Breast Recurrence Score report is generated for each patient. The report contains the Recurrence Score result—a number between 0-100—that assesses the 10-year risk of distant recurrence [1] in node-negative patients, 5-year distant recurrence or mortality in node-positive[3] patients and the likelihood that chemotherapy will benefit your patient.[2, 4]"

You can download a sample node-negative (N0) report (copyright 2016) on this page here:

>>> http://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/interpreting-the-results

Although the first graph in the sample node-negative report only illustrates the relationship between Recurrence Risk and Recurrence Score for scores up to 50, the Recurrence Score can still be any value from 0 to 100. In fact, on page 1 of the sample report, above the first graph, in the box entitled "Recurrence Score Result" it is expressly stated (screen shot):

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Jun 11, 2017 09:52PM Optimist52 wrote:

Thank you BarredOwl for your continued and comprehensive posts to correct the misinformation which is regularly disseminated on these threads regarding the Oncotype DX test. Given that it's such an important matter with people newly diagnosed potentially making a decision on chemo based on their Oncotype test results, it's wonderful that you take the time to post links and explain the issues.

For newbies there is so much information to comprehend at a time of great stress and many people no doubt believe the erroneous figures and 'facts' posted by others. It's always wise to check out the Oncotype DX website if in any doubt about recurrence scores.

Second diagnosis PILC - Oncotype 22, isolated tumour cells in 2 nodes Dx 10/2003, ILC, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 10/22/2003 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/2/2004 3DCRT: Breast Hormonal Therapy 3/2/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 6/23/2015, ILC, Left, 4cm, Stage IIA, Grade 2, 0/9 nodes, ER+/PR+, HER2- Surgery 7/5/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 8/12/2015 Femara (letrozole)
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Jun 12, 2017 01:15AM Meow13 wrote:

I dont think I have given any mis-information and take exception to your post.

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Jun 12, 2017 02:06AM Optimist52 wrote:

Meow, I wasn't referring to any of your posts at all. I wasn't intending to offend anyone, but to say thanks to BarredOwl and her very helpful posts. I was referring to various threads here where people get the TAILORx study parameters confused with the actual Oncotype DX recurrence scores. Also someone referred to the scale having changed to 1-50 when it hasn't actually changed.

Second diagnosis PILC - Oncotype 22, isolated tumour cells in 2 nodes Dx 10/2003, ILC, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 10/22/2003 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/2/2004 3DCRT: Breast Hormonal Therapy 3/2/2004 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 6/23/2015, ILC, Left, 4cm, Stage IIA, Grade 2, 0/9 nodes, ER+/PR+, HER2- Surgery 7/5/2015 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 8/12/2015 Femara (letrozole)
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Jun 12, 2017 07:47AM edwards750 wrote:

Other than someone posting the scores had changed for Oncotype testing I'm wondering what is the other mis-information being spread around?

It's a moot point for me because I had the test over 5 years ago. I feel encouraged with a low score realizing there are no guarantees. There are a few women on this website who also had low scores- 1 actually lower than mine- and had a recurrence.

Diane


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Aug 11, 2017 03:22AM - edited Aug 11, 2017 03:25AM by JJLA

I am Stage 2A, Grade 3 and 1 out of 5 of my lymph nodes biopsied tested positive for cancer. My oncotype score was 48 and I had my first round of chemo last Thursday. I have 5 more rounds to go of Taxotere and Cytoxan. Next up will be radiation and then hormone therapy because my cancer cells are Estrogen-positive (Tamoxifen). I'm 43 and the only one on either side of my families to be diagnosed with breast cancer. It sucks to have this disease because at the end of the day, we don't know our fates despite the tests, surgeries and medicines. But we also have to live life, enjoy our time with our friends and family, accomplish all the things in life that we want to accomplish, and above all things, try and stay positive and focused on ultimately being cancer-free :

Dx 5/12/2017, IDC, Left, 1cm, Stage IIA, Grade 3, 1/5 nodes, ER+/PR-, HER2- Surgery 6/22/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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Aug 11, 2017 12:17PM - edited Aug 11, 2017 12:19PM by QuinnCat

JJLA - I'm seeing this more and more. Patients not getting Adriamycin chemo, the "red devil," for high risk breast cancers. Does anyone know why?

PS you have a great attitude. I fret about cancer everyday and here I am over 5 years out. I fret less, but still less. I'm coming up on my 5 years with AIs and still deciding with my MO what to do, though last we spoke, decided on at least one more year. For some reason she hasn't kept up on the BCI test and she was going to do that before our next meeting.

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Aug 11, 2017 01:45PM ThinkingPositive wrote:

JJLA / Quinncat... I have the same stats as JJLA and had TC regimen. I was told by my MO that I could do either. RO told me that if I was on West Coast it would be TC and not to fret about my decision for TC over ACT. JJLA, I did not have the oncotype test, MO said it would be weeks before results and he was saying I should do Chemo no matter what... so why wait. I regret not having the test done. Always will wonder if my test results would be high. I assume since we have same stats it is very possible mine would have been high like yours. I only did 4 rounds.. as my MO said back then not much info on whether the two extra would be of any benefit to me. I will always worry.. JJLA, what did 48 represent?? I know everyone that has the same stats don't have the same results... so I am just wondering.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Aug 11, 2017 02:29PM JJLA wrote:

Hi Thinking Positive and QuinnCat, the test that was done on my mass to determine the likelihood of my cancer returning without chemo treatment and hormone therapy was Genomic Health's Oncotype DX Breast Recurrence Score (Breast Cancer Report - Node Positive, Prognosis and Chemotherapy Benefit (1-3 N+). To my understanding, the score of 48 meant that there was basically a 50% chance that the cancer would return and/or I would pass from it within the next 5 years if I did not receive chemotherapy and Tamoxifen to treat it. My report also said that if I did Tamoxifen alone, the likelihood of my 5-year risk for recurrence or mortality dropped to 30% and if I did both chemotherapy and Tamoxifen, it dropped to 16%. Basically, the test was telling me that the benefits of chemo outweighed the risks so I put it in The Lord's hands, and I'm doing these treatments and I'm hoping that 30 years from now, I can look back on this experience as something that is LONG behind me. And to Thinking Positive, QuinnCat, and all the wonderful ladies on this website, we will get through this :). My dad also has cancer (Prostate) and he is the strongest person that I know. He has lived with cancer for about 9 years but we are now in this cancer battle together. Every morning he says to me "We know, we pray, we fight!" I'm keeping his mantra in my head as I fight this thing. Ladies, we know, we pray, We fight :)!!!

Dx 5/12/2017, IDC, Left, 1cm, Stage IIA, Grade 3, 1/5 nodes, ER+/PR-, HER2- Surgery 6/22/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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Aug 11, 2017 02:53PM ThinkingPositive wrote:

JJLA, thanks for responding. That makes me feel alot better that doing chemo and hormonal therapy reduce the risk by that much!!! I am currently on Letrozole (Fermara) and have been for the past 2 1/2 years. How are you doing with the chemo? It really wasn;t that bad for me. What was the reason that you did TC vs. ACT?

And yes...we will get through this... !! Its been 3 years since my diagnosis... and so far so good...with the exception of the mostly constant worry. I have to work on that!!

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Aug 11, 2017 04:20PM - edited Aug 11, 2017 04:21PM by JJLA

This Post was deleted by JJLA.
Dx 5/12/2017, IDC, Left, 1cm, Stage IIA, Grade 3, 1/5 nodes, ER+/PR-, HER2- Surgery 6/22/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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Aug 11, 2017 05:27PM JJLA wrote:

No worries! My oncologist thought that doing the Taxotere/Cytoxan combo would be the best course of treatment for me so that's why I'm on those particular meds. So far, I've done 1 chemo cycle and the past 2 days have been great. I'm taking full advantage of it and I'm out running errands and getting things that I need to do done because I feel like myself (I almost feel a little bad that I'm out on medical leave right now ... but not too much (lol). I know that getting healthy has to be my priority right now and I'm a school social worker so being around a bunch of kids would not be a smart choice for me until my immunity levels are strong enough to handle it). The first couple days after chemo tired me all the way out. I also had to take the Zarxio shot for 5 days after my treatment and on the 5th day, I was hating life because my joints and tendons were hurting so bad. The thought of having to take those shots after each of these treatment cycles is giving me imaginary hives (lol) but I know it's a necessary evil. I took Claritin every day that I was taking the shot and Tylenol but that did nothing for me. I might have to go the Codeine route for the next round of shots if any muscle/bone pain kicks in. All in all, I'm getting through the chemo well and my anti- nausea meds worked wonders! I have yet to get nauseous or throw up - fingers crossed it stays that way :)!

Dx 5/12/2017, IDC, Left, 1cm, Stage IIA, Grade 3, 1/5 nodes, ER+/PR-, HER2- Surgery 6/22/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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Aug 11, 2017 08:14PM - edited Aug 11, 2017 08:15PM by ThinkingPositive

JJLA. So glad to hear you are doing well. I made it through 4 rounds with no nausea at all. Never took any anti nausea meds other than the ones in my IV. Was very tired and it got worse each time. My taste was gone and I lost my hair. I was thankful that's all I had to deal with!! I also took a leave but ended up going back part time after my second treatment just for a few hours a few days a week just to get out and use my mind. It was difficult because I worried about what people thought. The Clairton work for me I didn't have too much bone pain after my shot. Keep in touch and let me know how you're doing I hope all your other rounds go just as good as this one !

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)
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Aug 11, 2017 10:11PM JJLA wrote:

Thank You Thinking Positive and I will :)

Dx 5/12/2017, IDC, Left, 1cm, Stage IIA, Grade 3, 1/5 nodes, ER+/PR-, HER2- Surgery 6/22/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/3/2017 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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Aug 12, 2017 02:50AM Meow13 wrote:

My oncologist recommended ACT, but I never did any chemo just AI drugs. He mentioned my risk of 23% would reduce to maybe 10% if I did the chemo.

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Aug 12, 2017 09:14AM nottoday wrote:

Wishing you well, JJLA. My oncotype was 39 (even without a postive node!). I did 4 rounds of C/T almost 3 years ago, and now have about 2.5 years of Aromasin under my belt. At the time, my wonderful supervisors told me to take as much time as I needed, and work when I wanted to. I ended up teleworking quite a bit. I Ioved being able to think about something other than cancer and chemo! Lots of meditation also helped, and I still practice that. Sending lots of good thoughts your way!

Dx 7/23/2014, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 10/22/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/19/2015 Aromasin (exemestane)
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Aug 12, 2017 05:56PM ThinkingPositive wrote:

My MO wouldn't recommend. Gave me my two options and said it was. up to me. Told me all of the side effects and considering that heart issues run in my family I chose TC.

Dx 9/2014, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 1/17 nodes, ER+/PR+, HER2- Surgery 10/23/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 12/5/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Femara (letrozole)

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