Afr American Women With BC
I have been reading (and am overwhelmed with) all the information regarding Afr American women who have the poorest outlook when diagnosed with breast cancer. It is so frightening. I was diagnosed with hormone positive cancer (no chemo/rads). I am on arimidex. From what I understand, my kind of cancer is not the most common for Afr Am women. I am interested in know if others can share with me your story. Thanks.
Comments
-
Hey, Sherry...
I was diagnosed in 04 with hormone positive cancer. I've also had BRCA testing which was negative but showed some "mutation/variant of unknown significance." My mom was diagnosed with BC at age 44 and died at 49 and I have an aunt that was diagnosed with DCIS a year before I was. I was 37 diagnosis.
I think the statistics about Black women and bc are as bleak as they are because of two reasons: we tend to be diagnosed later than other ethnic groups and our cancers tend to be more aggressive or hormone negative. I know it is tough, but try not to get too consumed by the numbers as each cancer is different. More important than the stats are your personal treatment and follow-up plans, I'd say.
Feel free to send me a private message if you'd like or if I can help in anyway or if you just want to chat.
All the best to you! -
Sherry
I was also diagnosed in 2004 with this type of cancer. I had the exact same result from my BRCA testing as Felicia. My sister was diagnosed at 36 and died at 40. My aunt ( mom's sister) dx at 37 and dies at 43. Anyway I am here for you too. Nice to meet you both
Kat
-
Thank you both for the encouragement. I just went to my oncologist yesterday for my 3-month visit. He reminded me that my cancer was caught early and Stage 1, and that I am doing fine. Whew, that was a relief!!! If either of you want to contact me I'm at hickstable@aol.com. Thanks.....
-
Hey, Sherry...
Good news from the onc! - See, I told you those goofy stats are just numbers! The only thing they really seem good for is scaring the crap out of people! I think they should come with a little disclaimer: "Actual results may vary widely."
I pm'd you and Kat a little while ago. I'll send you an email as well. -
Hi Sherry,
I'm new to this site, actually this is my first posting. I too am overwhelmed with all the negative information regarding African American women who have breast cancer. Isn‘t there anything positive out there? Here's my story...found my lump in the shower last year one week after my 42nd birthday. I had no family history of breast cancer so I wasn‘t too concerned but went to the doctor to have it checked out any way. Biopsy result -Cancer. Lumpectomy of the right breast in June, tumor size 2cm, clean margins, high grade IDC with Medullary features, one positive node out of 10. Had DD chemo - 4 AC followed by 4 Taxol then 36 radiation treatments. I'm not quite a triple negative; I tested "weakly positive" for estrogen so I'm currently taking Tamoxifen. Husband and son were very supportive throughout whole treatment. I'm really trying to move on and get my life back but every week there seems to be something new and dreadful in the news regarding breast cancer and then I get depressed and start feeling "doomed" again.
-
PLilly,
This being Breast Cancer Awareness month, there are stats everywhere, which really ticks me off. Hard to hide from the "pink" if you tried!!
We've all been where you are - freaked out by the idea that this crap could come back - but I think it's important to remember that although every cancer may have similar characteristics, each one is also so very different. All the negative stats out there about Black women's survival rates don't necessarily mean that your journey will be the same. It may not seem like it now, but every day, every week, every month, every year gets a little easier. Hard to believe that you won't be thinking about cancer almost 24/7, but that day will come. You are bigger, badder, faster, stronger than the beast, for sure!
Hang in there... -
Thanks Felicia,
I needed to vent. I look forward to that day.
-
PLilly. Vent as much as you like. That day will come. Believe me when I say it...after being diagnosed all I did was think about, talk about and even dreamed CANCER all day long. When I first noticed that I didn't think about it, I was soo happy. Your day is coming...you just wait and see.
Hang in there sister...and if you need a listening ear, please feel free to pm.
-
Well! I vote for this to be a new forum!
Nicki
-
Hi,
Many African American women are diagnosed with Triplenegative Basal breast cancer. Young white women are also diagnosed with it, especially if they are positive for the BRCA 1 mutation. Not all Tripleneg cancers are BRCA 1 but almost all BRCA 1 cancers are triplenegative.
The problem lies in detection.
Yes, a triple negative cancer is more aggressive than its estrogen/progesterone positive counterpart. But that doesn't mean it is hopeless.
To review for any newbies, "Triple negative" is a really bad name for the cancer that strikes 30% of the population. It just makes it sound SO BAD- TRIPLE NEGATIVE... sheesh!
What it means it that the receptors on the cancer cell do not respond to Estrogen or Progesterone. That means the hormones in your body are not making it grow. That, to me personally, does not seem like such a bad thing- I was glad to know I wasn't growing the food for my cancer to feed off of.
So there are your two first "negatives"
The third "negative" is that your cancer does not have the receptor for the Her2nue oncogene. You do not WANT to have that gene! It makes your cells produce more cancer. You WANT to be HER2 NEGATIVE.
That is the third of the "triple negative"
I think docs use the term because it also means that triplenegs cannot benefit from the anti-hormonal drugs like Tamoxifen and Arimidex. We don't have to take those drugs because our cancer is impervious to estrogen and progesterone so there is no need to "stop the hormones" in our bodies .
It also means that we cannot benefit from taking Herceptin, the drug that fights the HER2 receptor in HER2positive women. OK. That is fine with me! I don't want to be HER2positive anyway so if I don't have to take THAT drug then that is another plus.
The key to triplenegative disease is that IF YOU CATCH IT EARLY you really can get RID OF IT.
So, the American Cancer Society tells us to get our first baseline mammo at age 40. IF I had waited til age 40 I would be in big trouble right now. And I had a gyn, who at age 35, told me to get a baseline. And I did. And because of it I beat my triplenegative cancer.
Young women are told "You are too young for cancer"- African American women are told "Cancer in African American women is rare"....
HOWEVER they don't tell us IF young premenopausal white and African American women DO have a cancer it most likely IS triplenegative and we want to find that as early as we possibly can so we can be treated and become NED (no evidence of disease.)
Chemotherapy works BETTER on Triplenegative cancer, thus improving its effectiveness and as a result, the survival rates.
It is something that is so very simple that can be FIXED if only we could get all the docs on board and the ACS on board AND our insurance companies on board to APPROVE SCREENING EARLIER THAN AGE 40. Because if we do, then pre-menopausal women and young African American women will have a fighting chance against Triplenegative disease.
Mammos don't prevent cancer. But they can prevent a bad outcome if you HAVE cancer if the mammo finds it while it is still small enough to be treated.
I tell every young woman I know to get screened by at LEAST age 35. It is the only way we can even the playing field.
The truth is, the stats for African American women are that they are more prone to breast cancer while young, but as they age and get post menopausal their risk of breast cancer declines, while white women's risks increase after menopause.
That info is just not out there and all of us need to spread to word so we can turn a tripleneg diagnosis into a tripleNED diagnosis for all of us.
Love,
g
-
I second that motion Nicki...as I am a Black woman.
Sheri
-
It would be nice to have a reply from the bco-admin on this topic.
Thanks.
-
I think I'll pm them with the request...
-
Thanks Felicia.
-
Hey ,
I too was diagnosed at age 40 er+pr+. I was misdiagnosed at first, once caught stage 3a . My sister was diagnosed stage 1 in her mid 30's, my father died from breast cancer .BRCA - but mutated gene. I was told by my oncologist that Black women die more because the cancers (for whatever reason) seem to be more aggressive and we are diagnosed in later stages. I wonder if it is due to misdiagnoses like myself or not going to get checked out? So far my sister is a 9 year survivor, in a few months we will celebrate her 10 years of surviving no recurrence, I am almost at 2 year mark and on arimidex(which I hate). Hope everyone is doing well.Love Benita
-
Benita...congratulations to both you and your sister.
IMHO...I think we get more aggressive breast cancers is because normally we are not proactive with our health. I have been having mammograms since I was 18 or 19 because of a lump in my left breast. Then at the age of almost approaching 50 I was diagnosed with breast cancer in the same area. I remember not feeling like getting a mammogram in 2003 because frankly I didn't want to be bothered. Then we my appointment was approaching for August 2004 I remember feeling the same way, but just went ahead and got the mammogram. Boy am I glad that I did! I often wonder if they would have found something in 2003 and if it would have been small enough that maybe I would not have had to go through all the treatments...chemo and radiation. I guess I will never know. I am just thankful that I am a 3 year survivor and hope to have many more years. I am currently on Arimidex. My body aches all the time, but I am not aware if it is from that. What problems do you have with it?
Nice talking to you.
-
I guess I'm the typical triple neg.
I Was diagnosed at age 41. No family history, didn't have the typical bc symptoms, so I wasn't taken seriously when I found my lump. It grew very quickly, and went to my axilla 3 weeks after I felt my lump in my breast. I believe if the medical professionals I initially went to see would have taken me a bit more seriously and stopped prescribing antibiotics, telling me the lump was benign and I was too young to have breast cancer without even seeing the mass via mammo or ultrasound, maybe it might have been caught before it went to the nodes. Maybe I'm wrong, but who knows?
I did TAC x 6, lumpectomy and rads. I got mets to the lungs 4 months after I finished rads. That progressed rather quickly as well to other areas including the liver, even with being on chemo. Every 2 months that I've gotten a scan since May there has been progession. The chemos that I've done so far have been Xeloda/Navelbine; Xeloda/Avastin; Navelbine/Avastin; There was progression on these combinations. Xeloda was a joke, things spread horribly. I've been on Abraxane weekly for 3 weeks and see the onc tomorrow.
My mother and sister have been diligent in getting their mammograms. They are very attentive when it comes to their health. I would consider myself the slacker. I just turned 41 when I found my lump, so was pretty on time in getting the mammogram. Although if I didn't have a lump, I probably would have waited.
I'm very blessed, though because I'm making do. I could be alot worse off right now.
Ferne
-
Hey Shor,
The Arimidex gives me terrible pain, nausea,diarrhea,lightheaded,memory loss(maybe from chemo or lack of estrogen). I feel 90 years old and I am only 42 . I was very proactive about my breast care , given my history. My doctor insisted it could not be cancer and I knew it was. He finally sent me to his colleague who sent me for needle biopsy and confirmed cancer. This went on for 3 months. My going back and forth to him insisting something is very wrong. I had my yearly mammo/sono (I had yearly mammo/sono since age 35 due to family history)in August,found lump in October , diagnosed stage 3 cancer in December.The cancer was very aggressive and spread very quickly. I had no signs of cancer in mammo/sono in August , the lump was 10 cm. in December. That is why I say is it our not being diligent or misdiagnoses? Good luck with the Arimidex(can take the pain as long as it does it's job), fd411 good luck to you with your treatments,how are you doing? How are the hot spots ? Any signs of shrinking? I am praying for you and shor. . Love , Benita
-
I've read (can't for the life of me remember where) that women with a family history should begin mammography at least 10 years before the age their relative(s) were diagnosed. That would have been at age 34 for me, but like shorbr, I've had lumpy breast for as long as I can remember (first biopsy at 16) and had been having mammos every other year since age 25. My cancer was found when I was 37.
I also remember hearing something about African-American women possibly getting baseline mammos at age 35 instead of the traditional age 40. The rationale, I believe, was that since our cancers tend to be more aggressive, early baseline mammos would help give the roadmap for comparison a little earlier.
I'm still amazed by the number of people from this very board who tested negative for BRCA but had a mutation of some sort - meaning a possible culprit gene that hasn't been adequately studied or named yet. What's the deal with that?
I worry about my female relatives - especially those younger than I was when diagnosed. I had no clue that having fibroadenomas and other benign breast changes put a woman at a higher risk for developing bc. I remember my OB/GYN mentioning the idea of having a proph. bilateral mast about six months before my dx. I wish I would have done the research and seriously considered it then, but hindsight is always 20/20...
All the best to you Benita, Fern, Sherry, Kat, Lily, Shorbri, Gina and Nicki... -
Felicia, that is true about that stat.
and since most African American Women get basal triple neg disease it is very rapid in its growth- so the earlier the better in the scans. It is all there is to have a fighting chance.
Ferne, my friend, what an amazing woman you are. I feel so blessed to know you. Prayers as always my friend. And as Steph says,
God is Able.
love to all,
g
-
Hello wonderful ladies,
Question - right now, a year after chemo, I'm just getting blood tests to check my liver function and tumor markers counts every three months plus a mammogram twice a year. Should I request a scan to make sure the cancer hasn't spread? I have no symptoms but because my tumor was an aggressive grade 3 shouldn't I have something other than a blood test?
Thanks again,
PLilly
-
Hi my name is Chantal Im 23 yrs old was dx on Aug 2 07 Im a triple negative. 4 out of 34 nodes positive. I have a appt. on the 9 Nov for genetic testing. I have had a aunt and two cousins die from breast cancer. Just wanted to say hi and I am here for support.
-
Chantal,Plilly,G and Felecia
I have to compose my self,23 years old, May God be with you, I am praying for you my young sister. Plilly , I am only getting blood test also ,unless there is a reason for a scan, bone pain headaches or some other reason. I go every 3 months for checkup with primary, oncologist, neurologist and breast surgeon. Felicia, I too have that mutated gene, I wonder what that is too? I worry soo much about my daughter who is 17. I already stated my history and her fathers mother died of breast cancer. I am taking her in February for her first breast check by a gynecologist, her pediatrician and I have been debating the idea of getting her a mammo or at least a breast sono. Any advice from anyone. I am so scared and confused about this how early is too early given our history. God bless all of you my sisters ..stay strong in the fight. I am praying for you. Much Love Benita
-
Hello ladies,
Since I was diagnosed, I think my older sister has been in touch with a breast specialist. She wants to get my niece seen and has been educating her. My sister has always had benign lumps and has been followed for some time. I knew nothing about the 'female problems' in my family until I got this lump and had to go for testing. I needed some kind of history to bring with me, although one doc brushed it off.
Hi Benita, I'm doing OK. I'll be on the Abraxane a while longer. I think it's doing some good :-) My hot spots are still hot. Onc says things are still not too good. But I'm not going anywhere just yet!
Chantal, I'm so sorry about your diagnosis. My prayers are with you.
hi g!
Ferne
-
It's getting to the point that I'm starting to dread seeing a new post in this thread - in a "glad to know you, but sorry we have to meet HERE" kind of way. There are too many women with this stupid disease! And bless your heart, Chantal! 23 is so incredibly young to be dealing with this mess...
Every October, when pink becomes my least favorite color (because it is freaking EVERYWHERE), I think about all the money that is raised for BC research. There are some wonderful treatments out there, but there is so still more to do! All these weird mutations, triple negative cancers, HER2++, just seems like there is so much further to go...
I did pm the moderators about moving this thread elswhere, but haven't heard back yet... -
I sent a PM to the moderators about a week ago to see if thread could be moved and haven't received a response yet.
-
Thanks Felicia for doing the leg work. I am sure they will probably respond to you quicker than me...since you are familiar around here.
-
Benita...so sorry that you are suffering with the Arimidex. I have to say for myself that I am relatively okay...just the normal aches and pains, but I attribute that to getting older (53). Other than that, I feel fine. Had an ultrasound guided needle placement about 3 weeks ago in my right wrist for carpal tunnel. Boy...that pain would wake me up in the middle of the night. One of the physicians in my department did the procedure, and I have been pain free ever since. And it could be too, that since I have lost 20 pounds I feel much better. Simply cutting out the cookies and candy did it for me. I started this in February and have lost the weight ever so slowly, but my blood pressure has even gone down to the normal range along with my glucose level.
Hope you are doing well today.
-
Hello all,
I finally changed to Femara , I hope the pain is at least a little less severe. I do not mind some paid, (it beats the alternative by far), but I would appreciate some relief.Thank you for asking Shor. I hope everyone is doing well. Do you all have family history? What are some ages of diagnoses? What stages of diagnoses? My sister and I both are ER/PR+ Her- .No one but my Dad and my sister and I have cancer in the entire family. My family either you live to be 100 or you die young of something odd, the cancer is so rare and now so evasive ,the only 2 girls my mom has and we both have breast cancer. My mom and her 4 sisters do not have it. Ages ranging from 70 to 55.Just curious about other women and their history and how this is effecting how you will teach your daughters , nieces, cousins about breast awareness, health and image. You are all in my prayers .Love Benita
-
I guess I have a strong family history of bc: mom diagnosed at 45 (died at 49), aunt at 52 (four years ago; still alive) and me at 37 (3 years ago). My aunt and I had a history of benign breast lumps and both ended up with DCIS. No one else in the family has any other cancers that we know of.
The issue for me is my dad's side - LOTS of heart disease there, so I need my estrogen! I'm on Tamoxifen now, but my OB/GYN thinks removing the ovaries once my five years are up is what I should do. Knowing that no one on my father's side (save for an uncle who just had open heart surgery) lived much past 60, The heart's the thing. I'm relatively healthy (save for this cancer thing, lol) - but heck, so were they. They just dropped dead one day of a massive heart attack. Lovely legacy, huh?
Benita - hoping you find some relief soon on Femara...
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team