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Topic: Waiting on Oncotype score and anxious

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: May 3, 2019 11:49PM

Pepper44 wrote:

I had a lumpectomy a week ago and my pathology report showed clear margins and no evidence of spread to lymph nodes. My tumor was 1.6cm and grade 2. Highly eR+ and PR+ and Her2-.

I’m trying to understand the likelihood or even possibility of a high oncotype score with my diagnosis. It seems the dr’s have just focused on likely radiation as a next step when we talk - but there must be a reason for doing the oncotype score. should I be mentally preparing myself for the possibility of chemo?

I guess I’m wondering is there any way to predict what the oncotype will be or others with a similar diagnosis willing to share their experiences?

This waiting is so tough. Ugh.

Dx 3/12/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 4/24/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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May 4, 2019 12:37AM KellyMSM wrote:

I don't yet have an Oncotype score and am very curious myself. My dx is similar to yours pepper44, except I chose mastectomy. Just found out today that no lymph node involvement and clear margins, but won't find out more until post op appointment on Monday. My doctor hasn't mentioned oncotype score at all, so that's definitely on my list of questions. I hate all this waiting and worrying too. It's helpful knowing others have the same worries, questions. Good luck!

Kelly Dx 3/28/2019, IDC, Left, 2cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 4/24/2019 Lymph node removal: Sentinel; Mastectomy: Left Chemotherapy Hormonal Therapy
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May 4, 2019 05:41AM Rah2464 wrote:

Bless both of you - the waiting is horrible I know. I remember walking into the MO's office trying to steel myself for a potentially high score and how I would feel. The best news is that so far you both have very good pathology - no node involvement, HER2-, and grade 2. We are so very lucky to have been diagnosed after the results of the Taylor X trial, where we have more information on how to fight this disease. We stand on the shoulders of some very brave women who participated in the trial to give some of us the option to bypass chemotherapy. I hope this holds true for both of you and that your Onco scores come back low.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/26/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/26/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 4, 2019 09:33AM Salamandra wrote:

Hey Pepper,

I had a very similar pathology and my doctors told me they did not expect my oncotype score to be high. They also told me that my treatment plan would be radiation and tamoxifen. It came back low, and they felt that this affirmed the lack of chemo and AI despite my relatively young age.

That said, there is a possibility it will come back high. That possibility is exactly why they do the oncotype test instead of just relying on the stats from pathology. There is a small subset of women whose cancer gets great benefit from chemo despite 'appearing' less aggressive based on pathology. It might also influence a doctor to encourage OS+AI rather than tamoxifen.

The only way to know, right now, is the oncotype. So there is at least a possibility of chemo. The doctors are not expecting it, clearly, but they also want to cover their bases and be prudent, so they are holding off on a final decision until the oncotype comes back.

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 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 4, 2019 12:11PM Pepper44 wrote:

Thanks everyone for your thoughts and stories. It feels like my family and friends think everything is fine after my surgery now, but I feel like there’s this cloud hanging over me still since I don’t yet know what treatment is still ahead. I guess I just need to take one day at a time.

Dx 3/12/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 4/24/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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May 4, 2019 01:42PM stayingpositive2019 wrote:

Hi Pepper44, I was in a similar boat, but my tumour grade was higher. My cancer had some non-aggressive features and a some more aggressive features (like the tumour grade). All conversations with the surgeon and the oncologists were that we thought my score on the oncotype would be low and that the worst was behind me, but of course no promises were made. I definitely prepared for the worst and hoped for the best when I went in to discuss results so that I wasn't surprised if we had to talk about chemotherapy.

So my score was 25, very middle of the pack, and due to my age (just turned 50) we decided that there was a benefit to going through chemotherapy. I want to do all that I can to reduce the chance of recurrence with no regrets. So started on April 16, I will have my second round of TC next Tuesday and will be 50% through the chemo :)

So, I would prepare yourself that chemotherapy might be part of the conversation.

Here's hoping that you get a low score!

Dx 1/22/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2- Surgery 2/13/2019 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 4/16/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy
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May 4, 2019 07:01PM - edited May 4, 2019 07:02PM by edwards750

Pepper - we truly understand your fear. I had the Oncotype test done after a micromet showed up in my Path report following my lumpectomy. My MO ordered the test because she said women had been over treated for years and this test gives them the information they need to determine if chemo would be beneficial. Also in the report is the risk of recurrence(percentages).

Fortunately my score came back@11 so I dodged chemo and had radiation instead. I can relate to the agony of waiting. It was 2 weeks before my test results came back. I have an 8% chance of recurrence. I had IDC, Stage 1b, Grade 1. I will be 8 years out this August God willing.

Try to stay busy. My thought process at the timewas to expect the worst and hope for the best.

We here for you praying for a low score.

Diane

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May 5, 2019 06:26PM momand2kids wrote:

Pepper

the waiting is the worst... Prepare for the worst, hope for the best is great advice. My oncologist told me not to worry about wigs-- all docs thought my oncotype would be low... but I figured that I would prepare anyway--went to the wig place and checked it out-- had some of my friends research chemotherapies---I am a worst case scenario girl--so it was very comforting to work all these details out. I had a very positive prognosis. My onoctype was back before the Tailor X trial--- so my score was a 26 or 27--- the dreaded gray area-- which meant I really had to make the choice. My kids were young, I was young and healthy-so I went for it.... and I have never regretted it once over the past 10 years. Yes it was hard, but I was able to work, still live my life. And I barely remember it now-and more importantly, when the Tailor x trial results came out, turns out I made the right decision!!!

You will handle whatever you have to when it comes. It is hard not to worry about it--so if you need to prepare "as if" I would say go ahead.... get the info about wigs, chemo, whatever else will help you out. Or, in the alternative, ignore all of that and act as if there will be no chemo (and literally about 70% don't need chemo (I think!). So odds are in your favor. Do whatever is going to soothe you during this challenging time.

good luck


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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May 5, 2019 06:52PM Meow13 wrote:

If you do chemo you can always cold cap too. Depending on the treatment you may not lose your hair or need a wig.

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May 5, 2019 07:15PM moth wrote:

There's really no way to predict - that's really the whole thing with Oncotype: it's looking down to gene by gene level analysis, stuff we can't tell from just looking at the cells or how it manifests in the body.
I wanted chemo from the start so that's a different way of looking at it. I wanted to do *everything* possible and the only way I would have skipped it was if my Oncotype came back clearly indicating that chemo would not not have any benefit (& even then, I probably would have tried to argue with the MO lol)

Maybe prepare yourself for having chemo and if it ends up not being necessary, it will be a nice plan to just move straight to rads.

Chemo wasn't pleasant at all & I had complications & side effects & ended up hospitalized etc, but I'd 100% do it again if I had to. Chemo these days is not like it's portrayed on tv in the old movies in the 80s and 90s. It is a lot more manageable.

hang in there - the waiting sucks. Stay busy, exercise if you can. I was just looking at my instagram from the months between surgery and start of my chemo and I was going on long walks and hikes almost daily during that time.

Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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May 7, 2019 09:08PM momahanx3 wrote:

Waiting was the worst!! This is actually the first time I’m posting but have been reading so much and this site has been so helpful. I had a bilateral mastectomy on April 1st and my Dr was pretty confident that I wouldn’t need chemo. I found out last week that my oncodx score was a 26 and because I am under 50 years old, he recommended chemo. I felt like I got punched in the gut!! He explained to me that I was “barely” ER and PR positive. Which made me almost a triple negative I was so angry! And I have been extremely positive during this whole process. Feeling grateful for having caught this so early. My husband,mom, sister, and cousin were also so angry and sad for me. It took about 5 days to wrap my head around it and get back to a grateful space, but I have managed to find the silver lining yet again. I’ve researched like crazy and met with the oncologist yesterday and feel confident that this is the best decision for me. For me I felt better when it felt like it was my decision and I wasn’t just blindly following what the doctor was recommending (and I love my Dr). I pray that your score comes back low and you can start to put this behind you! But if that’s isn’t the way it goes, I pray that you are able to come to peace with it and that you stay strong and healthy and positive throughout your treatment, Good luck 💕



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May 9, 2019 08:57AM moth wrote:

momahanx, there are a few more people here like you and me - so weakly hormone + that we're almost tnbc. We're an odd little subset. IME, MOs scratch their heads about our cases because there isn't much data that they can draw on, so they have to use a lot of extrapolating and clinical judgement to create treatment plans. I hope you keep checking in as you go through treatment!

Dx at 50; Left, IDC, 1.7 cm, Stage I, Grade 3, 0/5 nodes, very weakly ER+, being treated as TNBC Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast
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May 9, 2019 03:40PM UpstateNYer wrote:

hi all, I too was told that due to my diagnosis that my onco type would not be high, despite one tumor being grade 3. The other grade 2 as a "satellite" tumor. I also did not have clean margins ,after lumpectomy so had reexcision. That reexcision showed some small amount of DCIS, so it was on to a third surgery. I was prepped and ready to go when surgeon walked in and told me my onco score was 47!!! So surgery was postponed and had first T/C chemo infusion yesterday. What a ride this has been. I will also need radiation after chemo and third surgery done to clear DCIS at margin. For those waiting, hope your scores come back low.

Dx 2/6/2019, DCIS/IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/20/2019 Lumpectomy: Right Surgery 4/3/2019 Lumpectomy: Right Chemotherapy 5/8/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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May 14, 2019 06:53PM Pepper44 wrote:

So I finally heard back from the nurse at the oncologists office and my onco score is 22, which I guess is in the grey zone. I’ll talk to the dr Friday to find out more since it seems the answer on treatment plan won’t be as cut and dry. Sigh.

I’m the type of person that would feel much better if someone told me definitely yes or definitely no about chemo. I may make myself crazy over the decision ifthe dr tells me I could go either way.

Dx 3/12/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 4/24/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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May 14, 2019 07:24PM Toyamjj wrote:

Pepper,

I am also a 22, and had the same scenario where there was no real talk of chemo because they expected my score to be low. When I sat in her office and got the news of my score and what she recommended as the treatment plan, I was relieved to hear that she wasn't recommending chemo. She said I was in the grey area but I am young and otherwise healthy she felt that putting me into menopause would be the extra reassurance I needed to help keep the cancer from returning. I take a monthly lupron shots and anastrozole daily. So far no noticible side effects unless its to early to tell? Wishing you best of luck on your treatment plan!

DX at age 44 Oncotype 22 Dx 1/4/2019, Right, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/30/2019 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 2/28/2019 Radiation Therapy 3/13/2019 Hormonal Therapy 4/30/2019 Arimidex (anastrozole)
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May 14, 2019 09:20PM Beesie wrote:

Pepper, how old are you? I'm assuming 50 or under, since you are saying you are in the grey zone, and 22 is only in the grey zone for those who are younger.

These graphs of Oncotype score and recurrence risk might be helpful. They are from the TAILORx study that was released last year. They should be fairly consistent with what your oncologist will tell you on Friday, although he/she might have data that is a little more specific to you. The top graph is for those aged 50 and under, and the bottom graph is for those over age 50. "Arm B", the solid red line, represents the 9-year metastatic recurrence rate for those in the study who had endocrine therapy only. "Arm C", the solid blue line, represents the recurrence rate for those who had chemo and endocrine therapy.

It appears that the recurrence risk at a 22 score for someone aged 50 or younger is 8%-9% with endocrine therapy alone, and about 5% with chemo + endocrine therapy. So in either case, the risk is below 10%, which is very favorable. The question is whether chemo is worth it for that amount of additional risk reduction, and that's very much an individual decision. That's the discussion to have with your MO, weighing the benefits of chemo versus the risks.


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


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 15, 2019 09:14AM Pepper44 wrote:

hi Beesie,

yes I’m 44 so that’s why it’s coming up as a discussion I guess. I started looking at the Tailor study research. Interesting stuff and thanks for sharing. I guess I’ll know a lot more after my appointment with my MO on Friday.

Dx 3/12/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 4/24/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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May 15, 2019 09:21AM Toyamjj wrote:

Pepper,

We are at the same age too, hang in there you'll know the plan soon enough. Wishing you the best and sending hugs your way.

Toyamjj

DX at age 44 Oncotype 22 Dx 1/4/2019, Right, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/30/2019 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 2/28/2019 Radiation Therapy 3/13/2019 Hormonal Therapy 4/30/2019 Arimidex (anastrozole)
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May 18, 2019 10:17PM Pepper44 wrote:

I had a first meeting with an MO yesterday and he explained my various options. As I knew, my score of 22 puts me in a grey zone for value of chemo, and basically he said I have to decide how I feel about getting the small extra % risk reduction (about 3-4%) for my situation vs the possible risks. He wasn’t recommending chemo but also said he’d understand if I felt strongly about it and wanted to do it. He also thought that ovary suppression would likely give me a similar benefit as chemo. I’m going to get a second opinion next week before deciding anything. At this point neither option is feeling ‘right’ yet, and I have so many statistics and thoughts of side effects swirling in my head. These are really hard decisions to make!

Dx 3/12/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 4/24/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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May 19, 2019 09:35AM Beesie wrote:

Pepper, these are brutal decisions, aren't they?

It sounds as though your MO is using the same numbers that are in the chart I provided in my earlier post. The good news is that your risk is low (less than 10%), even without chemo. As I see it, the questions to consider are:

- Is your risk low enough that you will be able to live comfortably (relatively comfortably, anyway) without doing chemo?

- How will you feel if you don't do chemo and you develop mets? Based on the Oncotype chart, there's a 91%-92% chance that you will never develop mets even if you pass on chemo and just take endocrine therapy. If you decide to go ahead with chemo and then go on endocrine therapy, there is a 95% chance that you will never develop mets. So even doing chemo, you will still have about a 5% risk. If you don't do chemo and do develop mets, would you kick yourself for not having done the chemo, or would you figure that you probably would have landed in that 5% anyway, even if you'd done chemo?

- How will you feel if you do chemo and develop long term side effects? The risk is relatively low for someone your age (the risk of serious/permanent side effects is higher for those who are older) but it's still possible. Would you see that as a price that had to be paid to get your risk as low as possible, or would you be angry about that, and question whether you should have had chemo, given that it was considered optional and your risk was already quite low?

Of course until you are in a situation, you can't know exactly what you will think, but you know how your mind works, how you feel about risk and what level of risk you can live with, so that's what you need to consider. The way I make decisions of this sort is not based on which option I like best - frankly all of the options are crappy and I don't like any of them - but which choice I would regret the least, should things not go according to plan.

Let us know how your second opinion goes next week.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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May 19, 2019 09:58AM mom2bunky wrote:

OP I’m right here with you, awaiting results too. I’m thinking of you...

I’ve been reading this thread but had to post to say Beesie, your post above is remarkably helpful.

Dx at 55. KI-67: 18. Oncotype: 24 Dx 3/26/2019, DCIS/IDC, Right, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 5/9/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/24/2019 Whole-breast: Breast Hormonal Therapy 7/21/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 19, 2019 10:15AM - edited May 19, 2019 10:19AM by Cowgirl13

Beesie, incredible post. This information and how you have explained it is such a great explanation of risk vs benefit. May I suggest that you create a separate post so that it is a stand alone post. This would be extremely valuable to those who are considering/struggling with these decisions.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/16/2009 Chemotherapy 8/3/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/23/2010 Arimidex (anastrozole)
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May 19, 2019 01:36PM Toyamjj wrote:

Bessie thank you thank you thank you for posting this!!! My Onco score is also a 22 and my dr did not recommend chemo for me, but sometimes I get a little nervous wondering if I should've done the "throw everything at it" approach. Reading your post reassured me that I made the right choice in not getting chemo.

DX at age 44 Oncotype 22 Dx 1/4/2019, Right, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 1/30/2019 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 2/28/2019 Radiation Therapy 3/13/2019 Hormonal Therapy 4/30/2019 Arimidex (anastrozole)
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May 19, 2019 03:26PM Pepper44 wrote:

Yes, thank you Bessie for such a thoughtful post. It’s helpful to think through the scenarios and consider what matters most to me. There is so much swirling in my mind but this helps me put some structure and logic to my thinking. Thanks for taking the time to share this.

Dx 3/12/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 4/24/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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May 19, 2019 09:33PM - edited May 19, 2019 09:39PM by beep7bop

I am waiting on oncotype % but I have already started anastrozole been on it a month. I saw my oncologist  and asked about this test score. They hadn't done one due to my age and medical history. I kind of went to B mode. I said I plan on living to be 100. I want the test so I can have the right to decide. I might not even agree to have it but I want that choice and I want to know.       Don't want to die because they think I am to old. Everyone what were your ER % and PR %.        mine are 95 ER and 39 PR on Left breast and 100% ER and 95% PR on Right.         

Dx 3/11/2019, ILC/IDC, Both breasts, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right
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May 23, 2019 06:49AM momand2kids wrote:

Pepper

so sorry that it is so gray-like you I like a yes/no answer. That said, I was in the gray area too..for me there were some factors that I considered--my kids were 12 & 7, I was young and healthy and (and this is only for me) I knew I would probably sleep better at night if I had the chemo-- the question I posed to my surgeon and MO was this "if I was your sister, what would you recommend?" both said they would recommend the standard of care chemo. Now, this was before tailor x results so they were basing that on their own experience (which I completely trusted). But now there is data that can really help everyone. I think your MO's comments are helpful-- but in the end, it is really about what you can live with--- if you are thinking about chemo, ask what kind they would offer- how long (mine was short-- 4 treatments over 8 weeks)....

This is a hard decision--I can only tell you that I have never regretted it but I know others who had my same dx and did not have chemo and have also never regretted it. Best of luck


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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May 23, 2019 03:19PM Pepper44 wrote:

I had a second opinion and both MOs said basically the same thing, which is that chemo is up to me and they'd support either approach given the small risk reduction it would offer. Both said if I did chemo they would give 4 x TC over a 12 week period.

I am a person that worries a lot and I'm afraid I'll always be wondering if I should have done chemo. But I do fear the potential long term side effects like permanent baldness or neuropathy. And up to this point I was only planning for rads so the thought of chemo is really throwing me for a loop.

I also work full time and my husband stays at home with the kids so this is a consideration with the impacts. While my job is supportive and I can take some leave when needed, I'm in a position where it would be tough to completely step out for a few months. And long term I need to keep working.

I'm not feeling good about ovarian suppression given instant menopause. I already struggle with depression and anxiety and I'm really afraid for my QOL with side effects (long term).

Ugh I hate this!

Dx 3/12/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 4/24/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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May 25, 2019 09:29AM momand2kids wrote:

Pepper,

not sure if this will be helpful-but here goes. I was in the gray area (pre tailor x) around 26-- had 4 chemo (A/C ) treatments over 8 weeks then radiation. Because of a blood clot during one of my pregnancies, I was unable to take tamoxifen-which meant they had to put me in menopause (lupron) in order for me to take an AI (letrozole). I did the lupron injections every month at the gyn. There was vaginal dryness and atrophy (but I worked hard to counter that- saw a pelvic floor therapist and when I am good about the exercises, it is ok--dryness was probably going to happen anyway-lots of Replens etc). I did find that something (not sure if it was the letrozole or lupron) made me a little cranky for a while-- it took about 6 months to develop a rythym on the drugs. I stayed on lupron for 3 years then went off because I figured I must be in menopause- I was right-and took letrozole for 5 years.

As for working - I work full time and at the time of dx I was working in a fast paced executive position-- I had my chemo on Fridays and found that I usually "worked at home" on Mondays and Tuesdays. I was not sick but queasy and tired. Then I was back in the game on Wednesdays. I think it was right for me. I work with hundreds of people-I did not speak widely about my dx at the time-- so each day I could focus on my work and did not have to talk about cancer all day--it was really a relief and made me feel "normal". I was just really careful about not picking up any germs (I work in a university--so many opportunities to get sick!!)

We did not change our kids's schedules at all -they still had play dates, school, music lessons,--my h had to do more (cooking dinner) but overall I think we kept them on track and did not make a huge deal out of this. I suspect that they barely remember it-- I have had 2 other low level cancers since then and again, we keep the trains running and just keep moving forward.

You have to do what works for you-some people find working through chemo to be too much-- and that is ok-- my onc really encouraged it so I just did what she said. There are probably people in your workplace who are going through chemo right now and no one knows. I did buy 2 human hair wigs. My treatment started in January and I shaved my head pre-chemo- then by July 4 I was no longer wearing the wig and had a super short haircut for the summer. None of this is ideal. The best advice I got when I started chemo was "do everything they say to do, take all the drugs when the say to" because they really do have this down to a science.

All of that said, you may choose not to do chemo- and that is also up to you. I think it is hard when you have 2 same opinions and there is no clear path. But in the end, you have to live with the decision. Someone once told me - when you have a hard decision to make- wake up one day and decide yes I will do that- and live with that all day. On the next day, wake up and decide- no I will not do that- and live with that. On the third day, the decision might be clearer.

I had my chemo every other week. When I asked why it was so close together (many of my friends had it every 3 weeks) my onc said "you are young, healthy and we want you to get through this and get on with your life" . I really appreciated that.


happy to answer any questions that you have-- be confident that you will ulitmately make the best decision for you and your family.


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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May 28, 2019 05:47PM - edited May 28, 2019 06:52PM by mom2bunky

just got the call with my Oncotype: 24.

No chemo for me. So grateful for the TailorX study.

Onward toward radiation.

Thinking of you all my dears.

Dx at 55. KI-67: 18. Oncotype: 24 Dx 3/26/2019, DCIS/IDC, Right, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 5/9/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/24/2019 Whole-breast: Breast Hormonal Therapy 7/21/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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May 28, 2019 07:24PM Pepper44 wrote:

hi all.

Thanks to everyone for continuing to share your stories. They’ve all been helpful. I’ve been agonizing over my decision for the last week but have decided that I won’t do chemo and will move ahead to radiation. It seems my risk reduction with chemo would be about the same as with doing ovarian suppression (in addition to hormone inhibitor) so I’m going to pursue that and see how my body responds. I just couldn’t justify the impact to both my short term quality of life and potential long term side effects of chemo for something that ,might, help a little bit.

This has been a very difficult decision for me and I hope I can start to feel comfortable that it’s the right one and avoid the ‘what ifs.’

Dx 3/12/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 4/24/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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May 29, 2019 09:03AM - edited May 29, 2019 09:03AM by mom2bunky

Pepper, congrats on making a decision, and apologies if I hijacked your thread.

I think I'll always have a niggling doubt. But I do feel it's the right decision for me and I hope you do too. I plan to be even more careful than I was before to help keep this from ever coming back.

Part of my anger about all this is the "dammit I did everything right and I still got it!" But there are areas for improvement, I know. And I'll do them.

Dx at 55. KI-67: 18. Oncotype: 24 Dx 3/26/2019, DCIS/IDC, Right, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2- (FISH) Surgery 5/9/2019 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/24/2019 Whole-breast: Breast Hormonal Therapy 7/21/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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