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Should I get Chemo?

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Pookie72
Pookie72 Member Posts: 1
edited June 2021 in Just Diagnosed

I'm 49 years old and I was originally diagnosed with non invasive DCIS breast cancer, small tumor (12 mm), grade 2 in January 2021, but after the lumpectomy surgery in May it was revealed that it actually was minimally invasive and was upgraded to stage 1, grade 3. After surgery, the doctor reported that they still, despite invasion, achieved clear margins. Also, I had no cancer found in the sentinel lymph nodes.

However, despite tumor removal and no lymph node involvement, the most aggressive chemo plan for 5 months is still being recommended by the doctor based on the Oncotype pathology report on the original tumor. It reads as follows:

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RECURRENCE SCORE(R) RESULT = 34

PROGNOSIS: DISTANT RECURRENCE RISK AT 9 YEARS
With Al or TAM Alone: 22%

PROGNOSIS: ABSOLUTE CHEMOTHERAPY BENEFIT
RS 26-100 All Ages: >15%

QUANTITATIVE SINGLE GENE REPORT
ER Score = 8.9 Positive
PR Score = 7.1 Positive
HER2 score= 7.6 Negative

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I'm now debating whether to go through with the chemo or not, especially after having read about the many potentially dangerous side effects of Doxorubicin and Taxol. As I understand the report, chemo would reduce the risk of recurrence from 22 to 15%. First question: am I reading that correctly? Secondly, what does Al and TAM stand for?

Considering the potentially dangerous long term side effects from chemo, I really am on the fence about this. Especially regarding the cardiotoxicity and heart damage that Doxorubicin can do.

Any input would be highly appreciated. Thank you.

Comments

  • melbo
    melbo Member Posts: 266
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    other people will weigh in here and explain much better than I can, but I figured I would throw my two cents in as well. At your age, with a grade three (fast dividing cells = more aggressive), and with doctor recommendation, I would do chemo.

    The point of chemo is to kill any rogue cells that might have escaped from your breast. If those cells are in your body, they will set up shop somewhere and start growing. Right now, your cancer is curable and can be wiped out. If any cells escape your breast and start growing somewhere else, you would be stage 4 and stage 4 is not curable and is often terminal within a few years. There are outliers at stage 4, women who do live for years, but the average statistics aren’t great. And for most of the women who live for many years, they are constantly going to doctors, undergoing treatment, and wondering where the cancer will try to kill them next.

    Stopping the cancer now, before it can ever get to that point is the reason to do chemo. Of course, even if you do chemo and follow every treatment recommendation to the T — the cancer could still come back, because cancer is a tricky bastard, but the question you have to ask is how much risk can you live with and how would you feel five years from now if you didn’t do the chemo and the cancer came back? Some people are very comfortable with the risk and the cancer never does come back. Which is awesome. But I hope you do your research and fully understand exactly what the stakes are before making a decision.

    For what it’s worth — I did taxotere and carboplatin and it was all tolerable. I have some minor liver issues (fatty liver disease) from the chemo, but as long as I watch my diet and minimize my drinking it’s just fine.

  • castigame
    castigame Member Posts: 336
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    Ms Pokie 72,

    I second with Melbo said

    With that. AI is aromatase inhibitor TAM is tamoxifen. AI is for those who is past menopause and ovaries removed. The latter is for those who is not.

    Almost 4 yrs since the last beating which was total hysterectomy. Here is my view on chemo side effect. Yes they royally suck. Makes you really tired. And the Neulasta which helps your white blood cell count could make you cry. Had 8 every 2 wks and the last one even came one day early.

    Was 47 at DX. Because I weigh a lot, my dosages were high. P.S. I really miss in the middle of chemo weight.

    If you choose to get chemo, lots of sleep and exercise as much as possible.

    It would be 4 yrs since last chemo. My heart became stronger because I walk a lot more. I think I had temporary chemo brain for about 6 months. My blood test numbers are about prechemo level. I went back to full time as an accountant after all treatments were done.

    Please let me know if you have any more questions.



  • moderators
    moderators Posts: 8,286
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    Hi Pookie72, and welcome to Breastcancer.org.


    We're so sorry for the reasons that bring you here, but we're really glad you've found us and decided to join and post. As you can already see, our Community is full of amazing members who are always willing to offer advice, information, encouragement, and support -- we're all here for you!

    You've received some great responses above so far, but we wanted to just provide some links from the main Breastcancer.org site which might help you learn a little more about what you're dealing with and help you make a decision for your care:

    Who Gets Chemotherapy?

    Talking to Your Doctor About Chemotherapy

    Oncotype DX Genomic Tests

    We hope this helps! Please keep us posted here about your decision. We look forward to hearing more about you!

    --The Mods

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    "As I understand the report, chemo would reduce the risk of recurrence from 22 to 15%. First question: am I reading that correctly? Secondly, what does Al and TAM stand for?"

    Based on a 34 Oncotype score, your 9 year risk of a metastatic recurrence with endocrine therapy alone (anti-hormone therapy, a daily pill for 5 or 10 years), either Tamoxifen or an Aromatase Inhibitor, is 22%. Adding chemo provides on average (for all patients) a 15% or greater benefit in terms of risk reduction, but the information provided does not say what your risk would be reduced to.

    I would suggest that you ask your MO to run the RSClin model. This is a simple computer model that Genomic Health (the Oncotype company) provides to oncologists. It takes your 34 score, and adds to that your age, the tumor size (invasive component only; how large was yours?), and the tumor grade, and it kicks out a metastatic recurrence risk estimate that is customized for you. I believe that this model also provides more clear information about the actual benefit that you will get from chemo. This information might help you with your decision.

    You can read about RSClin in this thread:

    Topic: RSClin oncotype scores

  • gretchenbuddy
    gretchenbuddy Member Posts: 5
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    Hi Pookie72, I am sorry to hear that you have these difficult decisions to make. I am newly diagnosed. I am waiting for my surgery and know I will have to face the same decisions afterwards. I was not aware that the surgical pathology report would actually spell out the risks of recurrence and chemo benefit. Does anyone know if all surgical biopsy reports will contain this data?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
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    Gretchenbuddy,

    Pookie is referring to the Oncotype report, which was developed based on an assessment of a sample from the surgical pathology. The Oncotype test is a separate test than the pathology report. A tissue sample has to be sent to Genomic Health in order for them to run the Oncotype test. This is done for most patients who are ER+ and HER2-. Normally either the surgeon or oncologist will arrange for the Oncotype test to be done and the sample to be sent.

    A surgical biopsy or pathology report will not contain any of this data. It will cover ER, PR, HER2, grade, and, from the final surgical pathology, tumor size and nodal involvement (if an SNB was done). There may be some other things in the pathology report too, but those can vary depending on the facility.

    The Oncotype test is not done for those who are HER2+. Because HER2+ cancers are so aggressive, chemo + herceptin are always recommended for tumors that are larger than 5mm, and often even for tumors that are smaller.




  • moth
    moth Member Posts: 3,293
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    Pookie, hi, I'm sorry you're finding yourself with this diagnosis.

    I understand your concerns about the risks of the chemo but also, doctors don't prescribe it if the benefits don't outweigh the risks and in your case, before Oncotype was available, a young woman with a Gr 3 tumor would have been recommended chemo just based on those two factors.

    And I just want to be clear about the risks of NOT doing the chemo. We just toss the word recurrence but what does it mean? The risk is not a recurrence in the breast. The risk is a metastatic recurrence which is a terminal diagnosis. So when you're balancing those risks, be sure to be clear that the risk of not doing chemo is the risk of it returning and killing you.

    Most people go through AC+T with side effects that are manageable and even long term effects can be managed and controlled. There is no long term solution to Stage 4 cancer.

    I think Beesie's suggestion to ask for RSClin is excellent but honesltly, I have never, ever regretted throwing all I could at it when I had Stage 1. I did what they recommended. You get one chance at kicking the bastard down.

    Best wishes to you!

  • btwnstars
    btwnstars Member Posts: 81
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    Hi Pookie, I recently went thru this decision making process and felt very similar to you. I also have early stage, clear margins and no nodes. My oncotype was 28. I really struggled last week (as Beesie can confirm!) with what to do. I did end up asking my MO for the RSClin which she is going to provide. Don’t have it yet, but in the meantime my research and talking with other survivors & medical ppl, I am choosing to go forward with chemo.

    Two things really made up my mind… one, I was putting my stats in the UK predict model, which does not take into account tumor makeup like oncotype, and at first I was focused on the 80ish ppl who surgery was all they needed. But then I realized I had to focus on the 10 possible recurrences & after applying chemo it reduces to 6-7. So for me that read like assuming I will have a recurrence and knowing I can improve my chances of survival by 30-40%.

    Also I read a personal account of someone who fell in the intermediate score range & was not advised to do chemo, and ended up with recurrence 5 years after they finished tamoxifen.

    I figured I want to try everything I can now to prevent that and kno that I did. But trust me, it took a lot of thinking, sleeplessness, and conversation to get to that point.

    It’s an individual choice and I wish you well with whichever way you choose.

  • NatureYogi
    NatureYogi Member Posts: 135
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    Pookie72,

    Melbo and Moth pretty much sum up how I feel. Back in 2013 I was DX with DCIS, stage 0, grade 3, fueled by estrogen. Had a lumpectomy followed by radiation, left breast. I was offered Tamoxifen and turned it down. No problems, eating healthy, doing yoga everyday, working out, juicing, etc. Fast forward 8 years later, I was hit out of nowhere with lymph nodes swelling on right side at a alarming rate, had ultrasound and mammogram. Mammogram was clear, ultrasound showed 7-9 swollen nodes. Long story short, I was DX with Stage 3C Triple Negative/Inflammatory Breast Cancer. They said if I had taken the Tamoxifen, it wouldn't have prevented this since it was a different type of cancer. I had no lump, and breast didn't get red and sore until later on. I'm not wanting to scare you at all, but my point is that cancer is a sneaky beast. MRI showed a mass in left breast and lymph nodes were matted by now. Oncologist got me into chemo quick and even though AC was tough, the nodes went down with first 2 infusions. I finished chemo yesterday and I will have DMX late July, followed by radiation on right side, possible oral chemo later on.

    Was this cancer related to other in 2013? Who know 's, maybe not. It was easy to treat, but what I have now is not.

    My heart goes out to you because I know this is a hard decision, wishing you peace!