Conservative Treatment Options

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bestlifeforward
bestlifeforward Member Posts: 1
edited December 2020 in Triple-Negative Breast Cancer

Hi, All. Triple Negative. I have had a lumpectomy. Left breast. Stage 1. Removed 1.4cm IDC and another very small .5mm DCIS. Supposedly, the surgeon took an Atypical Apocrine Adenosis as well. margins are slightly small at 1.5mm, but clear. Two nodes taken and nothing in the nodes. Not happy with surgeon's recording of what was and wasn't done. Having to follow up closely on everything. Losing trust. Feeling that the HMO may be herding me through the system with a one-size-fits-all.

I am told that if my 1.4 had been slightly smaller, chemo would not necessarily be recommended. The happy face charts the oncologist printed from some Internet site tell me that I have a reasonable chance of doing OK for some years with no chemo. The chart reads, "Without therapy, this cancer shortens the life expectancy of a 65-year-old woman by 2.7 years. (from 19.9 to 17.2 years). It reads that the chemo would give me 319 more days. It just. Doesn't. Make. Sense. Of course, no charts, no guesses, no stats ever tell the story. BTW, the oncologist used the bulk of the consultation time trying to convince me NOT to have the chemo. After oncologist later consulted with colleagues, I received a phone call saying I NEED to have chemo. Sudden reversal.

I have requested the Oncotype DX test. It seems to me this should be done without the patient having to ask. Also, the original biopsy report suggested an MRI, which was not done. I think in such cases that test should be done as a matter of course.

I am 65 and otherwise vital. I am 99.9% convinced I will NOT do chemo. I have looked into proton therapy in lieu of radiation, but it isn't feasible. Left breast radiation could cause heart disease, though that is the one side effect the radiation oncologist did not mention in the detailed information I received. Also, the HMO said "not so much" about proton therapy, which they don't offer. Right.

I believe I should have the radiation. I know TNBC can show itself in other areas of the body, and that it can travel through the blood and doesn't need lymph node involvement. BUT I would rather have the best quality of life for my remaining years and not suffer potential and possible lingering negative effects on my life from the chemo.

All of that presented,

wondering if anyone here knows of other alternative therapies.

Wondering if TNBC and a hormone receptor positive tumor could co-exist in the same person. (Just curious. Haven't asked providers yet.)

Wondering if it is, indeed, true that chemo is not possible post radiation treatment, as has been suggested by my providers.

And anything else anyone can offer.

Thanks, in advance.

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  • moth
    moth Member Posts: 4,800
    edited December 2020

    Oncotype is not validated for triple negative cancers.

    Some people do have heterogenous tumors or 2 different tumors with different hormone markers but it's relatively rare.

    I did radiation & chemo. I didn't have any lingering effects. My hair grew back, my energy was back, I was back to living my best life within a few months of finishing chemo. (except that in spite of it all I did have a metastatic recurrence)

    you can look at a statistical outcome profile at Predict. https://breast.predict.nhs.uk/tool

    You'll need to know the Grade of your tumor as that is a significant factor. The chemo you'd be prescribed would likely be 3rd gen & you can see the outcomes between surgery only (assumes either lumpectomy+radiation or mastectomy. If you skip rads, you need to downgrade the survival numbers) and surgery + chemo.

    Ultimately whatever treatment we choose is always our choice and we just have to be content to live with how the chips fall in the future.

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  • MountainMia
    MountainMia Member Posts: 1,307
    edited December 2020

    Yes, stats are hard to interpret. You said this:

    ' The chart reads, "Without therapy, this cancer shortens the life expectancy of a 65-year-old woman by 2.7 years. (from 19.9 to 17.2 years). It reads that the chemo would give me 319 more days. '

    That doesn't mean that if YOU don't have chemo, your life will be 319 days shorter. It means the average life is shorter by that much. SO. If you don't have chemo, you might live just as long as your no-cancer life expectancy. OR you could live 3-6 years. The gamble isn't between 20 years and 17 years. It's really more like 20 years OR 4 years. THAT is the gamble.

    My stats are similar to yours with tnbc. My IDC was 1.5cm, with DCIS of 2.9cm. I was 58 when diagnosed and in otherwise excellent health. My MO also wasn't very strongly advocating for chemo, but he was quick to say my life expectancy was greater with it. I used the Predict site moth has linked. It persuaded me that I wanted to be one of the ones that had chemo.

    Good luck making your decision. Please come back through here to chew on it or ask any questions.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2020

    Hi bestlifeforward, Great input from the others. We're just chiming in to suggest that you may also want to get a second opinion, if you haven't already. It can be extremely helpful.

    To back up what moth said, here is a page on oncotype to read. Also, here is a section on triple negative breast cancer that could have some helpful content for you.

    Please stick around and keep us posted.

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  • Poppy_90
    Poppy_90 Member Posts: 105
    edited December 2020

    Just another TNBC jumping in. First of all, I am so sorry you’re going through this. My best advice to you, find a care team you trust. If you’re not happy with your doctor, it’s ok to shop around. You wouldn’t by a car from someone you don’t trust. Don’t feel like you have to stick with a doctor you don’t like. Your team is going to be so important as you work through the decisions that you will be making. You really owe it to yourself to find someone you trust.

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  • Beesie
    Beesie Member Posts: 12,240
    edited December 2020

    Not triple negative here, but thought I would pop in with a copy of the NCCN Treatment Guidelines. These are the gold standard, used by most facilities in the U.S..

    As you can see, chemo is recommended in all cases when the tumor is greater than 1cm in size. And chemo should be considered when the tumor is greater than 0.5 cm up to 1cm. So I don't know that I agree that if your tumor was 'slightly smaller', chemo would not necessarily be recommended - 4mm off a 1.4cm tumor is a significant difference in size. This translates to many millions of additional cancer cells, and longer time that the cancer has been in your breast undetected based on cancer growth rates. These factors, all other things being equal, increase the risk of metastatic progression. And that is why chemo is recommended.

    image



    As for the Oncotype test, it is only approved for ER+/HER2- cancers. Of the 21 genes within the cancer that are evaluated, both ER and PR are included and are very heavily weighted. Many women on this site who are low ER+ and low PR+ (or PR-) have had the Oncotype test and almost always end up with high scores and a recommendation to do chemo. So even if you could get the Oncotype test done, with a TN cancer, it's almost certain to result in a high score, confirming the chemo recommendation.

    None of this is to influence your decision but just to provide information related to why chemo was recommended. Good luck with your decision.


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