What helped you make treatment decisions following DCIS lumpectomy?

Posted by denise4sure @dposie, Oct 11, 2021

I had a stage 0 grade 1 low grade. Decided against radiation. Little difference between reoccurence percentages. Spoke to oncologist today about hormone treatment. I am 67 yrs old and working. Recommended that I take anastrozole if I do not have bone loss problems. If I do it will be Tamoxifen. I will decide soon. My greatest concerns are quality of life and side effects, which I've read comments about them here. It's a tough decision. What was helpful in making your decision?

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@beckypetty

These are the EOs I use to massage into both breast. I use 2 at a time and rotate them. They are Lemon, Pine, Clove,Orange,Rosemary,Sandalwood,Black Pepper, Chamomile, Copaiba,Frankincense and Lemongrass. I have a breast cancer coach and these are the ones she recommended for me.
I fired my oncologist. Lol. She insisted that I be put on “high risk” since I refused radiation and quit Arimidix and wouldn’t try another. She told me I would need a mammogram every 3 months. Told her I wasn’t doing that either and walked out. Went back to my DO and she agreed to set up any testing that I will need. My breast cancer coach advises me on everything, I talk it over with my dr and go from there. I’m doing great! Except I have terrible neuropathy! I find that peppermint EO helps the neuropathy pain . I make transdermal magnesium lotion and add peppermint EO to it.

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Thank you for sharing what you use. I make a lotion with peppermint and tea tree oil to put on my feet at night, I also take gabapentin.

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@texasduchess

With first breast cancer back in 2000 at age 45, oncologist said because I was "young," he recommended chemo. I could have passed on it, but with oncologist and husband both urging it, I did it, but opted for the less strenuous chemo--six sessions that probably wouldn't make me lose my hair. Turns out not doing Adriamycin chemo at that time was fortuitous as I was diagnosed with triple-neg breast cancer in same breast Sept. 2014 (and early DCIS in right) and needed to do Adriamycin chemo for that. Did six Adriamycin chemos followed by twelve Taxol chemos.

Am not being actively treated right now, but go to the oncologist twice a year for checkups--he just offered me the option of going just once a year as am six years out from chemo treatment, but I'll keep the twice-a-year schedule for peace of mind. The worst part of second breast cancer is reconstructing after double mastectomy; have had 7–8 surgeries now. Had to have implants removed in Nov 2020 and replacement of tissue expander (a lot of tissue was removed in Nov and had to grow enough skin to cover a new implant) in April.

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I am glad you are doing well, you have certainly been through it. Living with breast cancer that starts as a young woman is a challenging marathon. I am so grateful for the almost 18 years I have gained. But there have definitely been challenges. Since you are triple negative, you are not on any hormone blockers, is that correct? What is the plan moving forward for your reconstruction?

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@auntieoakley

I am glad you are doing well, you have certainly been through it. Living with breast cancer that starts as a young woman is a challenging marathon. I am so grateful for the almost 18 years I have gained. But there have definitely been challenges. Since you are triple negative, you are not on any hormone blockers, is that correct? What is the plan moving forward for your reconstruction?

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Back in 2001, I was pre-menopausal and my breast cancer was estrogen- and progesterone-positive, so I went on Tamoxifen. At that time, five years was the suggested amount of time to be on it (much later studies suggest 7–10 years for hormone inhibitors). Because of side effects (blood clot in calf and uterine changes/early cancer) and having a hysterectomy (which meant I was now menopausal), I quit taking Tamoxifen and went on Aromasin. All in all, I was on these two drugs for 8.5 years. I quit taking Aromasin 12 years ago and am not on any prescription medication.

New implants were placed in April of this year. Because my left breast was irradiated back in 2001, reconstruction has been problematic on that side. The new left implant has dropped more than the right one. I don't like how I look undressed, but I am very discouraged by continued disappointing results and having to shell out $5,000–10,000 for these surgeries (my cost after insurance).

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@texasduchess

Back in 2001, I was pre-menopausal and my breast cancer was estrogen- and progesterone-positive, so I went on Tamoxifen. At that time, five years was the suggested amount of time to be on it (much later studies suggest 7–10 years for hormone inhibitors). Because of side effects (blood clot in calf and uterine changes/early cancer) and having a hysterectomy (which meant I was now menopausal), I quit taking Tamoxifen and went on Aromasin. All in all, I was on these two drugs for 8.5 years. I quit taking Aromasin 12 years ago and am not on any prescription medication.

New implants were placed in April of this year. Because my left breast was irradiated back in 2001, reconstruction has been problematic on that side. The new left implant has dropped more than the right one. I don't like how I look undressed, but I am very discouraged by continued disappointing results and having to shell out $5,000–10,000 for these surgeries (my cost after insurance).

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I was diagnosed in 2004, estrogen positive, and her2 positive. Underwent multiple surgeries but was refused a bilateral with no reconstruction. Went through chemo, then oopherectomy, started tamoxifen, and then radiation. Then after 5 years of tamoxifen, I walked away for a few years trying to outrun it. Then it came back, more chemo with herceptin, it was only approved for recurrence so I didn’t get it the first time. I went on anastrazole for years. I am now MBC but progression free. I still wish they would have given me a bilateral. They are very disfigured and painful. Still doing the hot flashes 17 years and counting. The good news is, that if I feel cold, just wait, pretty soon I will be warm again. Lol. I am glad you are treatment free right now, but I am hoping they can work out reconstruction for you.

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@volkswagon

I was on Arimidex for 10-12 months before my 2nd mini stroke. Arimidex and Tamoxifen both have strokes as a side effect. I was told it is not a common one but my drs were not surprised by mine.

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I'd like to bring @trixie1313 into this discussion. She is a breast cancer survivor and also experienced a thalamic stroke. Although I don't know if it was related to breast cancer treatment.

What side effects do you experience after the mini-strokes, Volkswagon?

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No studies have shown that essential oils can treat or prevent cancer in people.

- Can Using Essential Oils Help Treat Cancer and Its Side Effects? https://www.cancer.net/blog/2021-07/can-using-essential-oils-help-treat-cancer-and-its-side-effects

Article excerpt:
"Maybe you have a favorite tea tree shampoo or lavender bubble bath that you use to relax. Scents from essential oils like these may make you feel happy and refreshed, and they are often valued parts of self-care rituals.

And during cancer, essential oils may be useful for some people in helping to relieve certain side effects of cancer and its treatment, such as anxiety and difficulty sleeping. Because of this, some people may wonder if the benefits of essential oils extend to helping treat or even prevent cancer. The simple answer is no. No studies have shown that essential oils can treat or prevent cancer in people.

However, their uses in relieving certain side effects are valuable to many people with cancer. Here, learn more about the benefits and risks of using essential oils during cancer, including the research behind their use in relieving side effects." Read more https://www.cancer.net/blog/2021-07/can-using-essential-oils-help-treat-cancer-and-its-side-effects

Here are additional helpful and evidence-based articles:
- Aromatherapy (breastcancer.org) https://www.breastcancer.org/treatment/comp_med/types/aromatherapy
- Aromatherapy With Essential Oils (National Cancer Institue) https://www.cancer.gov/about-cancer/treatment/cam/patient/aromatherapy-pdq
- All You Need to Know About Essential Oils and Cancer (Everyday Health) https://www.everydayhealth.com/cancer/all-you-need-know-about-essential-oils-for-cancer/

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@colleenyoung

I'd like to bring @trixie1313 into this discussion. She is a breast cancer survivor and also experienced a thalamic stroke. Although I don't know if it was related to breast cancer treatment.

What side effects do you experience after the mini-strokes, Volkswagon?

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@volkswagon @colleenyoung
I had a couple of small TIAs about 10 years ago so I don't think my thalamic stroke was related to chemo/radiation/aromatase inhibitors. But it was a whopper. WAKE UP CALL on my blood pressure! When talking with my oncologist about a possible switch in the future, I reminded her of stroke and so Tamoxifen would be off the table.

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@colleenyoung

I'd like to bring @trixie1313 into this discussion. She is a breast cancer survivor and also experienced a thalamic stroke. Although I don't know if it was related to breast cancer treatment.

What side effects do you experience after the mini-strokes, Volkswagon?

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The only side effect is that I will sometimes have problems with finding a word for a minute. People usually just fill in that word, they are use to it.

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@dposie I know that the people who have the most side effects or issues tend to post more but I hope there was helpful information here. Are you comfortable sharing what you decided for treatment? Did you get answers to some of your questions about treatments?

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I had to have 2 surgeries and then it came back that they did not get it all again. I decided to do a Mastectomy and I am lucky that I did. Because they would not have gotten it all.

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