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Topic: Black Women Face Unique Challenges to Sticking W/ Hormonal Tx

Forum: Black Women or Men With Breast Cancer —

Black Women with Breast Cancer who want to connect.

Posted on: Oct 23, 2018 10:51AM - edited May 1, 2019 12:57PM by Moderators

Moderators wrote:

Black Women Face Unique Challenges to Sticking With Hormonal Therapy After Breast Cancer Surgery
October 22, 2018

Compared to white women, black women diagnosed with early-stage, hormone-receptor-positive disease are less likely to take hormonal therapy every day, as prescribed, or to stop taking the medicine early. Read more...

Edited to clarify title of research news article.

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Oct 31, 2018 05:57AM Jinx27 wrote:

Thank you for sharing this information, I can't help but wince at the title, it almost sounds like most black patients are non-compliant, which is far from the truth. I was able to read this article and a similar one from NPR.

Whats even more interesting is that I had a personal experience with a Nurse Navigator who insinuated that I wouldn't take my medicine everyday as well, almost like she was told that black women wouldn't be compliant or might have difficulties following directions. Needless to say I was offended.

As a young African American woman who was diagnosed before the age of 40, I can definitely say that the barriers that exist for black women that were listed are correct. Like most women on in this online community, I am challenged everyday with balancing my new life with cancer. I am in chemically induced menopause and have hot flashes, weight gain, mood swings etc.

Im only able to combat these side effects because I have the tools to do so. I believe a lot of African American women need the following,

- an understanding that a lifestyle change is needed in order to increase quality of life and possible lower risk of recurrence.

- understanding that not one prescription fits all and the importance of communicating that effectively to a physician. I recently began to pay out of pocket for name brand Arimidex because I experienced horrible side effects with generic drugs (which is only covered through my medicaid insurance). All of my side effects have subsided. Not everyone can afford to do so however.

- a physician/MO who understands that African American women have stress factors that may not effect the white/caucasian patients.

- personalized/specialized care (creating fitness goals, referring patients to services (perhaps complimentary medicine) to combat side effects.

- Most MOs need unbiased nurse navigators and social workers to support them as well.

I had to do alot legwork and research to piece together a team of my own, a manual lymph node massage therapist, acupuncturist, a gym membership, a cognitive behavioral therapist and stress management. All of which can be covered through my Health Spending account through my employer.

It is my greatest hope that ALL women can have equal access to the same thing, but it's simply not true. Money and socio-economic status plays a LARGE role, unfortunately it was not mentioned in this article.

Diagnosed at 27 y/o, synchronous bilateral breast cancer. L. Breast : IDC, R. Breast: DCIS. ER 98%, PR 100% Possible mutation. 5-10 yrs hormonal therapy 08/31/2016 Tamoxifen, 02/01/2017- 06/10/2021 AI + OS,Tamoxifen 08/10/2021 -current Dx 9/8/2015, DCIS/IDC, Both breasts, 4cm, Stage IIB, Grade 3, 3/36 nodes, ER+/PR+, HER2- Surgery 11/17/2015 Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Chemotherapy 1/1/2016 AC + T (Taxol) Hormonal Therapy 8/28/2016 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin)
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Apr 28, 2019 03:53PM De1966 wrote:

This topic saddens me as a black woman age 52 now, who was diagnosed with Early Stage 1 breast cancer in September of 2018 to suggest that because I'm a black female I won't take my hormonal therapy pills. Well, I can honestly say that, I take it precisely at the same time because I have an alarm on my phone that goes off 15 minutes before I'm supposed to take it, therefore, I can get everything ready and take it on time. So, not all black females are quote-unquote not interested in their health. Being diagnosed with any stage of breast cancer is scary for any woman and seeing that this is a big scare for us all, there should not be any singling out because of a race. I feel that if you have some black females not taking their hormonal therapy medication after breast cancer surgery, it may have many factors involved, it may be, they can't afford it, it may be that they're so depressed and afraid and not having support, just maybe gave up because they have breast cancer along with other challenges they may face, that you have no clue about. A doctor doesn't know what the reason is, because as a doctor, not being God, they can only give their hypothesis on a situation instead of trying to say they're not going to take it, find out why. I feel that a LOT, not all, of these doctors are losing their bedside Manner, and the caring side of being a doctor. I am offended as a black woman because for one, I take very good care of myself inside and out and I'm not on any type of medication but my hormonal therapy pills at my age. Because I am healthy and I have no other health issues that need medication to control it.

So, will we be seeing a topic on why white females who were diagnosed with early-stage breast cancer that don't take their hormonal therapy pills as prescribed? What about a topic on all Races of female's who do that? Because I feel all Races do it.

I am not trying to offend anyone. This is just my thoughts as a black female who's been diagnosed with early-stage breast cancer and now taking hormonal therapy pills for 5 years.

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Apr 29, 2019 10:47AM Moderators wrote:

Hi De1966,

Glad to hear you're successfully sticking to your treatment regimen! Unfortunately, many women — regardless of their race or ethnicity, as you point out — have trouble with completing their hormonal therapy treatment as prescribed.

We understand how this headline may have made you feel that black women were being singled out. But what these researchers found was that black women report more side effects and face unique treatment barriers, which can make it harder for them to stick to their hormonal therapy.

The reason we reported on the study was to highlight these unique barriers black women face in hopes that they can recognize them and talk to their healthcare team about them.

Here's a quote from one of the researchers that might help clear things up: "It's not women's fault that they're having a hard time with therapy. It's a hard medication to take," said Stephanie Wheeler, associate professor of health policy and management at the University of North Carolina, Chapel Hill, and lead author of the paper, in an interview with NPR. "I think we can do a better job supporting women."

Thanks so much for your feedback on our research news coverage – it really helps us do our job at Breastcancer.org.

--The Breastcancer.org Team

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Apr 29, 2019 04:02PM Cowgirl13 wrote:

If I were a black woman I would not find this helpful or encouraging. Couldn't it be possible to take this entire post down?

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 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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Apr 30, 2019 02:46AM Salamandra wrote:

This post has been nagging at me too. Multiple Black women have given feedback and criticism. It should be acted on.

At least the title should be changed. There are ways of expressing the main idea that aren't as problematic.

But maybe the mods should think about what the value of the post overall is. Not every piece of research gets posted on BCO.

I would think it would make sense to fold this one article into a larger one about barriers to healthcare faced by Black women, or about racial disparities in breast cancer treatment and outcomes, or something more comprehensive that does cover more of the ground that Jinx27 pointed towards. It could maybe also include resources and links.

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 Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/2/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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May 1, 2019 12:57PM Moderators wrote:

Hi all,

Again, thanks to everyone for your thoughtful feedback. We hear you and have revised the article's headline to more accurately report the conclusions of the study researchers, who emphasized that they were not placing blame on the women who struggled with non-adherence in the study. Please note that the article concludes by linking readers to additional resources, including our page on Staying on Track With Treatment.

We are committed to including research that highlights racial disparities in breast cancer care in our news coverage in hopes that by discussing them they will be eliminated more quickly. With your help, we'll continue to do our best to cover these topics in as sensitive and respectful a manner as possible.

--The Breastcancer.org Team

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