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Topic: 37y/o onco score of 27 and considering no chemo - Please advise!

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

Posted on: Oct 5, 2018 04:57PM - edited Oct 5, 2018 05:36PM by Fukcancer

Fukcancer wrote:

Here are my stats:

36 years old at diagnosis IDC. My tumor was 1.7cm stage 1. I had a lumpectomy with clear margins and no node involvement. Grade 3. ER+ (80-90%) PR+ (60-70%), Her2-. Ki67 80-90%. Oncotype score of 27.

From the beginning of this nightmare, I've been getting conflicting information. After my initial biopsy and diagnosis, the nurse navigator said chemo was unlikely and I would proceed with radiation and hormonal therapy after surgery, especially if my nodes came out negative. Now two different MOs are recommending chemo (specifically TC x 4) followed by radiation and hormonal therapy . I am terrified of chemo and am considering rolling the dice and going with the chance of distant recurrence of 18% vs. what they are saying COULD be 12% to 10% with the recommended chemo. I have also read that Taxotere can cause permanent hair loss in up to 15% of patients.

Is declining the recommendedchemo just stupid? Are there any other survivors out there who got hit with this disease in their 30s or 40s with stats similar to mine who declined chemo and have not had a distant recurrence? Please give me hope!


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Oct 5, 2018 05:14PM hapa wrote:

I would verify those recurrence risk numbers. A reduction of 3-6% in recurrence risk does not seem worth it to me and I'm surprised you have two oncologists recommending chemo based on those numbers. Were those numbers given to you by the oncologists who recommended chemo? Chemo itself carries risks aside from permanent hair loss.

Re: hair loss on taxotere, I read as study that I can't dig up right now, but it said permanent hair loss was more likely with older age, more rounds of taxotere (6 rounds vs. 4), and dosages over 100mg/m^2 (typical dosage for BC is 75mg/m^2). It also said rate was 6-10%, but that included patients with low grade hair loss, meaning people who thought their hair came back thinner than it was before.

I did chemo and I thought it would ruin my life forever but it wasn't that big of a deal. My last infusion was July 11 and I still have some peripheral neuropathy but that's about it for long term side effects.

Dx 12/8/2017, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 1/2/2018 Zoladex (goserelin) Hormonal Therapy 1/2/2018 Arimidex (anastrozole) Targeted Therapy 2/14/2018 Ibrance (palbociclib) Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 5, 2018 05:18PM Fukcancer wrote:

Thanks for your response! Sorry, the reduction rate was quoted from 18% to 12-10%. I corrected this in my post.

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Oct 5, 2018 06:18PM Cat_Lady wrote:

Fukcancer,

You're diagnoses is very similar to mine. I was 26 when I was diagnosed. Stage 1A IDC grade 3 Er+ Pr+ Her2- with Oncotype is a 14 and with Tamoxifen only my percentage of recurrence is 9% and if I had chemo with tamoxifen it would've dropped down to 5%-3%. I didn't think that small of a percentage was worth going through chemotherapy. It is a difficult decision but it is untimely only yours to decide. It does help hearing similar stories. When do you see your oncologist next?

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Oct 5, 2018 06:31PM lmurphy wrote:

Fukcancer, you fit all the medical criteria for getting chemo (ie, young age, grade 3 tumor, TailorX study results) which is why your Docs are recommending it. NONE of us wants chemo and I was against it from the get-go. BUT, I now know with chemo, I did everything within my power to prevent a possible recurrence. Yes, chemo comes with risk, but Stage IV scared me more. And, undergoing chemo (TC x4) wasn't as hard as I had feared.

DX at 62: OncotypeDX score=52 (ER≥12.5; PR<3.2); Path (ER=99%, PR=0%, Ki67=55%) Dx 10/2017, DCIS/IDC, Left, 1cm, Stage IB, Grade 3, 0/5 nodes, ER+/PR-, HER2- Surgery 11/14/2017 Mastectomy: Left Chemotherapy 1/13/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/31/2018 Aromasin (exemestane)
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Oct 5, 2018 07:10PM mLghtn wrote:

Hi, I'm so sorry you are going through this, it is a nightmare for sure! Now 6 months have gone by really fast for me. my dx was ER+(100%) PR+(100%) Her2- with Ki67 85%, 2.7cm tumor. I was 49 yrs old. Every cancer is individual and I was already stage 2 at dx, so I am not trying to say that I had what you have, therefore you should do what I did, but maybe it will give you some info regarding chemo and doctor's rational. They had me do neoadjuvant chemo (before surgery to shrink tumor). I did AC T chemo, they recommended aggressive chemo because of my young age(under 50), high ki67, and fast growing cancers respond best to chemo. Because the ki67 was so high, it falls into luminal B group of cancer which has higher risk of recurrence and considered a more aggressive cancer. I do not regret the chemo at all, I was terrified initially, it was not easy, but it was doable and I had a very good outcome. All the aggressive cancer was gone at time of sx and final pathology, just some ca cells left in tumor bed, no longer a mass, HR+ with a ki67=7%--so not likely to metastasize, they called it very indolent. Now, because of the chemo I have greater peace of mind as far as this aggressive cancer is not going to pop up again in my breast or somewhere else. They told me if I had a recurrence it would likely be of the slow growing type that was left after chemo, and that would take many years growing at that rate to even be detectable. In short I no longer have high anxiety that this cancer could possibly kill me. The hair loss is very scary and depressing at first, but in the big picture it became the least of my concerns. I thought being almost 50 I would have grey hair after chemo--it was really long and blonde pre chemo. But its already grown back thicker than before, more than an inch long and its not been 3 months since I finished chemo, and its the same color. You could consider cold capping with the TC ( they told me basically futile with AC T). I realize the treatment is a long journey, which looks like it might change you forever, so you don't want to subject your body to even more that might seem like over treatment. For me personally its the radiation that I want to skip out on. I figured with my great outcome why should I subject my body to more? I've been firmly talked out of this now by all of my doctors for various reasons specific to the path I was on. For me personally statistics help little because as a hospital nurse I see the statistics all the time. In other words they are all the unlucky 1% or 10% or whatever it is. So the bottom line for me was to know I did the best I could do to prevent metastasis. I will be continuing on to rads next, I hope this helps a little, wishing you well on your treatment path.

Dx at age 49, neoadjuvant chemo followed by oncoplastic surgery Dx 3/12/2018, IDC, Right, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 3/26/2018 AC + T (Taxol) Surgery 8/30/2018 Lumpectomy
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Oct 6, 2018 12:09PM - edited Oct 6, 2018 12:09PM by hapa

I have to agree with mLghtn. I thought if this cancer came back down the road and I had declined a recommended treatment, I'd be really mad at myself. As things stand, I still have a pretty high risk of recurrence (my cancer was more aggressive and further along than yours), but at least I can say I've done literally everything I can to prevent it from coming back. And having done everything possible, there is nothing else to be done so there's no point in worrying about it anymore. That's just how I think of it and what helps me feel at ease. And I also agree with mLghtn that given the choice I'd rather avoid radiation. But I'm doing that too. Good luck with your decision.

Dx 12/8/2017, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 1/2/2018 Zoladex (goserelin) Hormonal Therapy 1/2/2018 Arimidex (anastrozole) Targeted Therapy 2/14/2018 Ibrance (palbociclib) Dx 3/20/2018, IDC, Right, 3cm, Stage IIIA, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/28/2018 Perjeta (pertuzumab) Targeted Therapy 3/28/2018 Herceptin (trastuzumab) Chemotherapy 3/28/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 8/22/2018 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 6, 2018 01:00PM - edited Oct 6, 2018 01:04PM by Meow13

I am one who thinks throwing the kitchen sink at this disease is not particularly useful. I did decline chemo but mostly because the oncodx score and provided statistics fell short of convincing me.

You don't really know what is going to happen, I think surgery is definitely a good idea probably cures approximately 70% of early BC cases. You need to look at your pathology and the oncodx score together. One thing we do know is chemo kills fast growing cells. I would not hestitate to ask for other opinions. Don't dismiss hormone therapy, it too is a systemic treatment you are er and pr positive.

For hair loss: You could check out taxol instead of taxotere and also cold caps.

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Oct 6, 2018 01:09PM Fukcancer wrote:

Meow, I have already had a lumpectomy. The result was clear margins and no node involvement. The surgeon said I was “cancer free”

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Oct 6, 2018 01:19PM KatyK wrote:

understandably many women ask this difficult treatment question. Really need a crystal ball - we are all different. I was late 40’s, small tumor, no lymph involvement, clear margins, radiation but no chemo. Very low oncotype of 6. Was told low risk for recurrence but sadly at 59 the bastard returned! I was not worried about recurrence, was very healthy but cancer does what it wants. My advice do whatever you can to prevent. Stage IV sucks! I wish you love, hugs and a cancer free future

Dx 7/2017, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Oct 6, 2018 01:38PM Meow13 wrote:

katyk, so sorry to hear it came back and in the bones. I am 7 years out and thinking maybe I should be looking into my original cancer more and see if there is something I can do to prevent recurrence. I don't think my mo will recommend active treatment but I can't help but think I should keep looking.

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Oct 6, 2018 01:54PM stephilosphy00 wrote:

Hi KatyK, so sorry your cancer returned while the original tumor was considered very low risk. That's why I chose to do whatever I could to fight -16 rounds chemo and almost 5 months of oral chemo, they sound terrible but actually doable!

Dx at 29. Original mass 2.5 cm. Biopsy MRI and PET/CT confirmed 1 node involved. Ki-67 score 7.5%. ER100% PR100%. Genetic testing negative. Restaged to stage IIA post surgery. Chose to do 6 cycles of Xeloda to prevent recurrence!! Dx 11/9/2016, DCIS/IDC, Left, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Chemotherapy 11/18/2016 AC + T (Taxol) Surgery 5/10/2017 Lymph node removal: Sentinel; Mastectomy: Left Hormonal Therapy 5/21/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 7/11/2017 Aromasin (exemestane) Radiation Therapy 7/12/2017 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 4/3/2018 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Zoladex (goserelin)
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Oct 6, 2018 03:40PM buttonsmachine wrote:

(I posted this reply on your other thread in the Alternative Medicine section, but this is probably the more appropriate thread for my response, so I copied it here.)

It's ultimately your decision. Because of your age, I would get an opinion from an NCI designated, comprehensive cancer center if you haven't already. You need to see someone who is a specialist in BC, not just a general MO. See: https://www.cancer.gov/research/nci-role/cancer-centers/find

You could also ask an MO to order FoundationOne testing, which gives additional information about how risky your cancer is. See: https://www.foundationmedicine.com/

My concerns are your young age and high grade. I was initially diagnosed at age 32 with Stage 1A, Oncotype 32, 1.6cm IDC, Grade 3, node negative disease. I had two local recurrences despite doing chemo, whole breast radiation, and tamoxifen. Now that I'm at a better cancer center they got it under control, but I dearly wish my cancer had been managed better from the beginning, and not treated like an "ordinary" breast cancer.

I hated the idea of chemo in the beginning too - but in my case I really did need more aggressive treatment. I'm sorry you're in this situation, I know it sucks. Hugs and best wishes to you.
Initial diagnosis at 32 years old. Chest wall resection 18 months later due to skin metastasis, probably from needle track seeding during initial biopsy. Skin graft from right thigh! Dx 8/2016, IDC, Right, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 10/1/2016 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 11/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/1/2017 Whole-breast Hormonal Therapy 5/1/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 9/2017, IDC, Right, Grade 3, 2/5 nodes, ER+/PR+, HER2- Surgery 11/1/2017 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 12/27/2017 AC Dx 1/2018, IDC, Right, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 3/13/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Right Radiation Therapy 5/14/2018 Chest wall Hormonal Therapy 6/30/2018 Zoladex (goserelin) Chemotherapy 7/1/2018 Xeloda (capecitabine)
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Oct 6, 2018 04:52PM WC3 wrote:

My cancer is strongly HER2 positive grade 3 and aggresive so chemo was strongly indicated.

I have completed 5 rounds of taxotere and carboplatin (though I believe the C in your case may be cyclophosphamide) and have one more left.

The down side is, I may be permanently infertile now and though I cold capped, I lost much of my hair and yes, there is a chance it will not grow back. I have a slightly increased risk of developing leukemia (about 2.5%) but my chance of dying from breast cancer if I didn't have chemo was significantly greater.

The upside is, as far as side effects go, while it hasn't been fun, and I have had days where I really wanted to be done with it, chemotherapy hasn't been as bad as I thought it would be. I envisioned I would be sicker than anything previously and vomiting frequently, but I haven't vomited at all and I've had very little nausea. Most of my side effects, while I have a steady trsin of them, are short lived...3 days, 4 days, 5 days. My most enduring issue has been weakness and fatigue, part of that being from chemotherapy induced anemia. My strength and energy picks up near the end of my cycle but there has been an overall decline and I tend to feel wiped out easily and have to be careful not to over exert myself lest I be overcome with something.

The side effect that actually bothered me the most was taste changes that were actually due to one of my anti nausea meds, Aloxi. It caused things...water in particular, to have a bad sweet taste that lasted most of my cycle. I just found it particularly repulsive and couldn't get it out of my mind. I would start thinking about it randomly and then almost gag, so they switched me to a different anti nausea med and now it's not as bad and only lasts a few days.

The thing I look the least forward to is the dexamethasone, which is the steroid I have to take. I take it the day before and the day after and can't eat while on it because it makes my blood sugar too high. However I don't get very hungry for that reason. Then I get withdrawal when I stop it, which makes my throat and esophagus very tender for a few days.

Not fun but not the hell I imagined. Most MOs want chemotherapy to be tolerable enough for patients to finish it and will cut down the dose or change the schedule or chemotherapy medications themselves as a last resort if necessary.




Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 6, 2018 06:00PM Meow13 wrote:

WC3, did they ever mention taking taxol instead of taxotere? I completely understand why you chose your treatment being grade 3 and her2 positive. I hope it resulted in a cure for you.

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Oct 7, 2018 07:47AM WC3 wrote:

Meow13:

They didn't. I found out about taxol from BCO. I'm not sure why my facility prefers taxotere as standard for triple positive but I live near the infusion place so weekly infusions would not have been a problem for me.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 7, 2018 11:21AM Meow13 wrote:

I have heard and saw the class action lawsuits on permanent hair loss from taxotere, not sure if taxol is that much different I think the percentage of people with permanent hair loss is less.

My mo suggested AC and T treatment for me, he mentioned either taxol or taxotere both pretty much equal results so I could see why a clinic would do only do one.

Are you cold capping?

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Oct 7, 2018 12:17PM - edited Oct 7, 2018 12:17PM by WC3

Meow13:

I am cold capping with Dignicap but I have not had excellent results. My hair is thin enough now that my scalp is easy to see and if I don't wear a hat, people ask if I'm ok.

I think for the first two infusions I didn't have proper coverage and the cap may not have been left on long enough. For my previous infusion we used a smaller cap but I think the pressure on the sensor impeded the cooling fluid on that side because most of the hair in that spot fell out after that infusion.

My parents still think it was worth it but we will see.


Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Carboplatin (Paraplatin), Taxotere (docetaxel)
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Oct 7, 2018 12:36PM Bostoniangal25 wrote:

Fukcancer, I n 41 now , and stage 1B, estrogen + 95 , progesterone + 3%, grade 3 , oncoscore was 29 . I seen director of oncology and was recommended lighter chemo taxotere and cytoxan 4 times every 3 weeks.

I m almost done with treatment and must say - it was doable , ac plus taxol is harder on body.

And I used Paxman cold caps - I have hair , not bad.

And if you want to preserve fertility- they can shut your ovaries if you want kids in the future just for treatment.

Hope you make right decision!!! Chemo is not that bad . In terms of side effects

Dx 5/30/2018, DCIS/IDC, Left, <1cm, Stage IB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Oct 7, 2018 12:51PM YoungTurkNYC wrote:

I would like to post information that most doctors fail to mention to their patients.

Fukcancer, your doctor was not in a position to tell you that you are "cancer free" after a lumpectomy. As a matter of fact, this is patronizing misinformation. A lump should be viewed as a collection of cells that can and do break off from the tumor and have the ability to get into the bloodstream or into the lymphatic system. These cancer cells start freely circulating throughout the body. A lumpectomy does nothing to kill these freely circulating cancer cells. Chemo, hormonal therapy and other systemic therapy which is delivered to the entire body as opposed to just the tumor site are able to kill these cells that have escaped. The more aggressive the tumor (such as grade 3), the more likely that cells have already broken off and escaped. Oncotype is one tool in determining the aggressiveness of a tumor and assumes that you will take hormonal therapy (and determines solely whether chemo is beneficial). One of the reasons why cancer returns is that some of these cells may set up shop somewhere else in the body if they are not killed; and in some instances, they are not activated or remain dormant for many many years but they nonetheless get activated/return. The goal of the systemic therapy is to kill as many as possible of these cancer cells which may have escaped.

It is of course entirely your decision as to how you wish to proceed, but I feel that doctors do patients disservice by treating patients with kid gloves and not giving them information that the doctors know about the nature of a tumor and what systemic therapy is used for.

Dx 10/14/2012, DCIS, 6cm+, Stage 0, Grade 2, 0/6 nodes Dx 10/14/2012, ILC, 1cm, Stage IIA, Grade 3, 0/6 nodes, ER+/PR+, HER2- Dx 10/14/2012, IDC, 2cm, Stage IIA, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 10/24/2012 Mastectomy: Right; Prophylactic mastectomy: Left Surgery 10/24/2012 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/9/2012 AC + T (Taxol) Surgery 5/28/2013 Reconstruction (left); Reconstruction (right) Surgery 7/8/2013 Prophylactic ovary removal Hormonal Therapy 7/15/2013 Femara (letrozole)
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Oct 7, 2018 12:53PM YoungTurkNYC wrote:

As a clarification to my post above, cancer cells can get directly into the bloodstream without going through the lymph nodes.

Dx 10/14/2012, DCIS, 6cm+, Stage 0, Grade 2, 0/6 nodes Dx 10/14/2012, ILC, 1cm, Stage IIA, Grade 3, 0/6 nodes, ER+/PR+, HER2- Dx 10/14/2012, IDC, 2cm, Stage IIA, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 10/24/2012 Mastectomy: Right; Prophylactic mastectomy: Left Surgery 10/24/2012 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 12/9/2012 AC + T (Taxol) Surgery 5/28/2013 Reconstruction (left); Reconstruction (right) Surgery 7/8/2013 Prophylactic ovary removal Hormonal Therapy 7/15/2013 Femara (letrozole)
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Oct 8, 2018 02:32PM momand2kids wrote:

Hi there

so sorry you find yourself here-- your question about chemo--- I was in my40's when dx'd. I was ILC, ER/PR+ no nodes -all signs pointed to no chemo--- had a lumpectomy and we were talking radiation-- then my oncotype score came back at a 26 or 27... so, it took me about a minute to decide (although I did check with my surgeon and oncologist--both said if I was their sister, they would recommend chemo)... I had 2 young children, a good career, a good life-- it seemed like a small thing... so I did 4 rounds of A/C over the course of 8 weeks. Lost all my hair, but it came back and is thicker than ever (and it was pretty thick beforehand). I worked through most of chemo, some days less than others! It has been almost 10 years and I don't have any regrets. Yes,there are some side effects, but for me, they were minimal.... and honestly, I can barely remember chemo now.

I have said this often, but the way I decided was to think about what would be the decision that would allow me to sleep at night--- and doing chemo was that decision for me. Not a sleepless night (about this) since then. I have an annual mammogram, an MRI every other year and a few clinical exams with PCP, gyn and onc.... I literally almost never think about this.

There is no doubt that chemo can be hard-- and it sounds like your drs. think this is the way to go. You get to decide. Just because they think it does not mean you have to agree to it. I would suggest that you think about how you might be feeling a year from now-- if you don't do it, will it worry you? If you do do it, will it worry you? To me, this is about your own mental health for the future-- what is the decision that will bring you the most peace? You cannot predict the future-- but the results of the long Tailorx trial are in and lots of people don't need chemo-- check it with your drs. Or get another opinion..... but in the end, the decision is yours. I wish you the best of luck with this. If you go with chemo, see what the options are-- there are lots of chemo options.


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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Oct 8, 2018 03:14PM etnasgrl wrote:

I was 41 when diagnosed. I had a lumpectomy with clean margins, no cancer in the lymph nodes. 

My oncotype came back with a 27. I declined chemo, but went forward with radiation and now Tamoxifen. My oncologist at the time told me that he was unsure if the benefits to chemo outweighed the risks. I just did not want to put my body through the trauma of chemo without knowing for sure it would benefit me. 
In my opinion, cancer is a crap shoot. I know of women who have done chemo and yet the cancer comes back. I know of women who did not do chemo and the cancer came back. Vice versa. 
Doing chemo does not guarantee that you will remain cancer free.....that being said, gather as much info as you can and then make the best decision for you. That's what I did and I have ZERO regrets. I am actually, 3 years later, still very happy that I declined chemo. Without a doubt, it was the right decision for me! 

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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Oct 8, 2018 04:00PM voraciousreader wrote:

this year, the TailorX study was completed. The research focused on what to do with patients who got “intermediate “ Oncotype DX scores. Many patients moved out of the dreaded intermediate zone. Based on the score of 27 and under 50, chemo is now recommended.



Here is the study.....


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


You should also familiarize yourself with the SOFT/TEXT study as well.

http://www.ibcsg.org/News/Pages/TEXTSOFTPressReleaseASCO2018.aspx




Bottom line, you need to do what you think is best for you. I would also recoomemd several opinions. You can request that a Tumor Board look at your results and you can always get a second opinion.


Good luck.




Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Oct 8, 2018 05:38PM Sadlynew2018 wrote:

Hi everyone! So, I’m 41 and additional stats below. My onco score was 27. My MO recommended chemo to me even before finding out about the single lymph node involvement. I agree 100% with the comments above - it’s whatever helps you sleep. I am risk adverse and scared of most things. So I’m throwing it all at it. Others may be different. It’s a truly personal choice which has no right or wrong. Just take time to think it over. It will come to you. I wish you luck with your decision either way. It’s certainly not an easy one.
Dx 8/9/2018, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 8/28/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 9/5/2018, IDC, Right, 3cm, Grade 3, 1/15 nodes, ER+/PR+, HER2- (FISH) Surgery 9/10/2018 Lymph node removal: Underarm/Axillary
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Oct 8, 2018 06:09PM Bostoniangal25 wrote:

sadlynews, I have almost identical dx score was 29, 1 of 3 lymph nodes just small micromet, I decided to do chemo because I m 41! Almost done with it! What is next for you? I believe - me going through hormonal therapy , brr😩not wishing to do it, but have too- have 3 kids ..

Dx 5/30/2018, DCIS/IDC, Left, <1cm, Stage IB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Oct 8, 2018 07:49PM Sadlynew2018 wrote:

hi Boston! We have 3 kids too! So yes, I completely understand! I’m so jealous that you are almost done! I start tomorrow morning (yikes!) with ACT regimen. Trying to figure out how the heck I am gonna to be able to sleep tonight! This blog has been golden in understanding the possible SEs.

How was your treatment? Did you have a finish line date?
Dx 8/9/2018, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- (FISH) Surgery 8/28/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 9/5/2018, IDC, Right, 3cm, Grade 3, 1/15 nodes, ER+/PR+, HER2- (FISH) Surgery 9/10/2018 Lymph node removal: Underarm/Axillary
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Oct 10, 2018 07:46PM Bostoniangal25 wrote:

hello Sadlynews! Sorry I missed your message here! I finished my 4 Taxotere cytoxan treatments!!! Today! Feeling a little bit tired I didn’t sleep enough last night!

I will write about my SE the day after - it s when u had them before!

Why are you taking Ac-T it is a bit stronger chemo ?

I hope it went well, my friend took it- she said she felt fine first 4 , then felt tired after !!! But she finished!!! And so you will!!! Sending positives wibes and prayers your way!!!❤️❤️❤️❤️

Please write me back, wants to know!!! Irina

Dx 5/30/2018, DCIS/IDC, Left, <1cm, Stage IB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Oct 16, 2018 08:48AM Pamela23 wrote:

Fukcancer--this may be easier to read concerning the new finding on intermediate Oncotype scores.

https://www.cancer.gov/news-events/press-releases/...

I TOTALLY understand where you are coming from. I was a 28, just calcifications so Stage 1 but Grade 3. Told I'd only do rads + tamoxifen until the Oncotype score came back. I got a 2nd opinion and at the time 2 years ago, I was in the gray area between 18 and 30. I wish this research came out before I went through chemo, but I'm still not sure what I'd have done. One side says, hit it with everything you have while the other says is the benefits worth the risks for such a small percentage drop?

Fast forward 2 years. I STILL cannot taste. Only had 4 rounds of TC. Huge quality of of life issue. I was also thrown into menopause in my mid 40s so had to deal with the side effects of hot flashes, low libido, vaginal dryness, vaginal atrophy which some of this has resolved but sex will not be the same!! Loss of the smaller nerves (unfortunately that included my clitoris). All this for "insurance" that it'll decrease my chances of recurrence. They don't tell you chemo can't kill stem cells. I think all of us can attest to some sort of chemo PTSD. The physical changes as well--some girls gain a ton, I lost quite a few and was on the low end to begin with. The hair loss was traumatic even though I cold capped.

That said, I got through it. I dealt with each side effect head on. I switched to a whole food, plant based diet as well as supplements and feel amazing. I learned a thousand lessons on that journey which were invaluable. Yes, it SUCKED!!! But I have 3 kids and I did what I thought was best at that time. I cold capped which helped a lot but throughout the year still lost 75% of my hair but I'm a year ahead in growth of the other girls who didn't use one. So if you choose to do it, there is "the other side" but know it's a LONG journey. They said to can take up to 2 years to heal and I feel that is true. Emotionally and physically. I still question whether I did the right thing but the changes I made--from revamping all my cosmetics to pardon free, to changing out to glass storage containers from plastic, drinking filtered water, green tea daily as well as some other chlorophyll rich additives like spirulina and barley wheat grass in my smoothies, exercising 4-5 days/week, taking care of ME by getting enough sleep, cutting down on alcohol, even tried yoga, cutting down on sugar and processed foods. It really changed my life. I'm not sure I would have been so determined if I didn't have the motivation of wanting my energy back so much. Because it REALLY takes away your energy and depletes your immune system. So something good DID come out of it. I'm putting my health above everything because at the end of the day, that's all you got.

Unfortunately no one can ,make this decision but you. Please research, research, research. I just got done watching some of the Truth about Cancer documentary. Maybe that can help you make a decision. Episodes 1 & 2 are worth watching.

Any doctor will go by protocol to prevent a lawsuit.

Good luck!

9/15/2016, IDC, Left, 5mm, Stage IA, Grade 3, ER+/PR+, HER2- Dx 9/15/2016, IDC, Left, <1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 10/6/2016 Lumpectomy: Left Chemotherapy 11/15/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/20/2017
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Oct 16, 2018 02:27PM - edited Oct 16, 2018 02:29PM by Bostoniangal25

Pamela 23, thsnk you for posting about that stupid Tamoxifen SE, I m 41 and have to take it soon!!!! I hate it already, but I also have 3 kids , I m just dreading about it. Can they give different dose ?

Did you ever heard about treating vaginsl atrophy with Mona Lisa touch? My oncologist in Boston recommended it

Dx 5/30/2018, DCIS/IDC, Left, <1cm, Stage IB, Grade 3, 1/3 nodes, ER+/PR+, HER2- Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant Surgery 7/3/2018 Mastectomy: Left; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)

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