BREAK the SILENCE: What are Black women NOT saying?
I was diagnosed with breast cancer in June 2010... Life changed in subtle and in dramatic ways. I am now a part of a sisterhood that I had no intention of joining... but the truth is that with or without the diagnosis of cancer, we all are a part of a community that needs to Concerned about Breast Cancer.
I don't think we are really talking about breast cancer in the black community and I want to know why not. African-American women in the District of Columbia have the highest breast cancer mortality rate in the nation! AND I live in DC!! How and why are we dying at higher rates??
As a pastor, I want to know why we pray for those with cancer and don't mention "breast" or "prostate" cancer. I have my own ideas, but I would love to know what you think. I believe the church can and must do more about healing but particulary about breast cancer.
ALSO, we talk about the impact of prostate cancer on sexuality but there is little or no conversation about breast cancer and sexuality. Sisters, why are we not talking about sexuality and breast cancer??? We need to speak up. Are we afraid or embarrassed to talk about this??
Sisters, talk to me! I will share what I'm doing but I want to hear from you. My blog is BlessedBreasts.com Check it out.
God be with you, me and all of us. Amen!
rev
Comments
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Hello,
I was diagnosed with stage 2 breast cancer in August 2009 and I live in the metro/ DC area. Maybe I could answer some of the questions you posed; from my own perspective and life situation. I'm currently dealing with weight gain, joint pain, hair thinning, and neuropathy ( some of the residual effects left over from my last chemo. tx.) I never expected to hear that I had breast cancer when I went in for my routine exam. The thing that really disgusted me, is that my previous exam was read by a (female!) radiologist who assured me that she saw two benign cysts and made the recommendation that I return in a year. If she had just suggested that I get a second opinion, I can't help but wonder if my cancer could've been caught at an earlier stage. In the end, I lost my left breast.
Part of me wonders if doctors take black women seriously when we do complain. For several months, I complained of a sharp, stabbing pain near my left nipple. I was told time after time after that initial exam, to wait until my next mammogram because the docs didn't feel anything during my office visits. For the record, neither did I. I'm not that well endowed and was told that I have dense breast. I truly believe that we aren't given the recommendation for second opinions when a suspicious lump is detected.
I also believe that financial costs or insurance coverage ( lack of ) poses problems. My insurance didn't want to cover the cost of my mammogram because it was submitted as routine instead of a follow up. It was during my routine visit that another radiologist ( a man!) suggested I get another opinion.
When I encouraged my friends ( many of them black women over 40 ) to have their mammograms; only a handful said they would. Some of them verbally told me, they'd rather not know. Didn't want to lose their hair or their breast; they felt fine though many are overweight, one is diabetic, a few have high blood pressure; many don't trust doctors. These excuses anger me.
I hate the way I look; severely depressed. I'm fat, my hair has been reduced to dry, lifeless threads on my head and my husband no longer looks at me or touches me the way I want him to. I'm here for my children. I'm alive but not living. I've completed chemo. and radiation; I'm in remission. I know I should be grateful for existing and I know that God does have a plan for me; He has plans for all of us. I'm still finding my way back.
Sable43
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Wow! Sable and Rev-great points.
It's funny. One of my best friends was dx'd with BC at age 35 and died almost 6 years ago at age 39. She lived in the DC metro area and was pleased with her care. She was in the medical profession (research) and had access to the best and brightest. I was diagnosed and still completely surprised.
One of the nurses in my church and I have done programs on BC over the past 2 years-discussing everything from risk factors-being proactive with diet with supplements, exercise, and being hypervigilant so that in the worst case scenario it is caught early.
Given the fact that we discuss so much openly and frankly-in front of the whole congregation at our Pastor's invitation and in a special session with just the women, there are still some things that I have not shared. Although I covered the hot flashes-I didn't discuss the other chemo-pausal side effects (sexual, etc) and only brieflly discussed the potential side effect of lymphedema which I have. There are so many ways that lives are impacted by this disease. Part of my issue in holding some details back is that I don't want people to feel sorry for me while I attempt to educate. I refuse to let this be any more than an inconvenience. It will not define my existence as I am victorious through Christ. So I try to balance the education portion and emphasize the need to be proactive in our health care. I agree we need to be our own advocates and must become educated to do so.
I was fortunate enough to attend a Retreat for BC Survivors (Infinite Boundaries in Wisconsin sponsored by BC Recovery). It was awesome in that I could discuss these issues with other women who actually understood what I was experiencing. It also allowed me to work thru some of my faith/healing issues vs the need to care for my temple. I understand the Sisters Network is another good avenue for African American Survivors to discuss issues, support each other and reach out to educate.
Rev I had the opportunity to check out your blog. How awesome! It was definitely a blessing. I will be referring new friends with BC to your site. I love your "invitation'. The journey is ultimately about healing and faith of us and our heart issues. God is. Or as Triple Negative (Stephanie) always said, God Is Able.
I am interested in hearing more about the things you are doing in your community and church.
Peace be with you!
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Rev, I love your blog -- especially this:
In the face of failed dreams, broken hearts, confusion, sadness, fear, rumors, and loss… we lock ourselves away emotionally and spiritually… and sometimes even physically. But, we need to be clear that if we follow Jesus… Jesus comes through our locked doors. We need to know and trust that Jesus is on the other side of the locked door with us!Indomitable, I so hear you on not wanting to be pitied, and on your reluctance to discuss lymphedema with your brothers and sisters. It carries such a stigma -- it's about disfigurement and distress and loneliness, and the constant reminder of our breast cancer experience. Women with lymphedema feel that, and they want to lock themselves away.
If there were no way to reduce our risk of the disfigurement of lymphedema, then maybe not mentioning it would be easier to justify. But women (and men with prostate cancer who have as much risk for leg lymphedema as we do for arm and chest lymphedema) need to know that they can act now to reduce their risk, and that if their arm or chest begins to feel heavy, achy or tingly, they can get prompt help from a well-qualified lymphedema therapist that will greatly ease the management of their condition for the rest of their lives.
I too hear Black women saying they don't WANT to know if they have cancer and, once they have breast cancer, that they don't want to hear about lymphedema either. Who does? I don't know what to do to encourage them with that first part, but we can sure make that second part a whole lot easier to face if we're willing to talk about it outloud to our communities and churches. When everyone knows about it, it begins to lose its stigma, and that is a very great gift for those of us who already deal with it.
I sure am not saying you should do something you're not comfortable with. But for me, to avoid locking myself away and to acknowledge the power of Jesus to come straight through all my own locked doors, I've had to reach out to others about this devastating side-effect of cancer treatment and try to make it known and diminish the fear.
None of this is easy, but Jesus gives us courage,
Binney -
Oh what a powerful topic. I must say I was mentored by several white women who had BC. They have no shame in discussing things in an open way. I can tell you that shame keeps our community from talking about this. I got the impression that the church is mention it during October but things quickly fade. I believe that this is due in part to us "not wanting to claim it(BC)" do we believe that education is claiming BC. I hope not. At any rate I have had some post bc issues but I am happy most days and feel no shame. I am willing to be an open book and help anyone who is suffering from this disease. What about reconstruction..that is another tabu subject.
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Happy to be apart of rather than all alone. I'm a bit emotional with all this new information and the reality of being recently diagnosed with breast cancer. I am afraid and feel now I have to rush around in order that get my life straight before it's too late. I have a wonderful support system, my family but honestly i guess no one understands better than if you have live with the diagnosis. So I thank all of you beautiful black women that made it possible where i could began to speak out after being silenced for so long. To answer the Reverend's question, I am afraid. i still don't want to discuss the issue with my significant other until i have some definitive answers, sounds a bit contradictory but I'm not all that informed so that stands a reason why women are not saying, they don't want to sound unknowledgable but the fact of the matter is that people do perish for the lack of knowledge. Since being diagnosis I have visited websites and was given a wonderful book by my aunt entitled Dr. Susan's Love's Breast book. It is the bible for women with breast cancer. Not to take place for the word of God or his promises, but information is powerful and the better informed I am, the better equipped I am able to handle the reality of being somewhereinbetween.
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I guess this is what you were speaking to about us Reverend. Not staying consi
I guess this is what you were talking about Reverend. Us not being consistent and reporting back what we find in ourselves that makes this disease all the more serious and can be devastating to our families; when we don't seek to inform and educate. I'm a little disappointed that no one has acknowledged the reciept of my message or provided me with further encouragement. I don't mean to sound self-centered in the course of my treatment. I am blessed because of websites like this that has given me a voice to spaek out across the airwaves and reach those that may be living with a diagnosis. I will stay encouraged and seek to encourage others as he sees fit. Be blessed.
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I guess this is what you were talking about Reverend. Not being consistent and reporting back what we find in ourselves that makes this disease all the more serious and can be devastating to our families; when we don't seek to educate and inform. I'm a little disappointed that no one has acknowledged the reciept of my message or provided me with further encouragement. I don't mean to sound self-centered in the course of my treatment. I am blessed because of websites like this that has given me a voice to speak out across the airwaves and reach those that may be living with a diagnosis. I will stay encouraged and seek to encourage others as He sees fit. Be blessed. Although I am somewhereinbetween in all of this I will continue to break out of my own silence.
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Somewhereinbetween--there is power in information and even more power in talking about this disease. This is a great site it provided me with much comfort during my time of struggle. I pray that all is going well for you. Feel free to pm me anytime.
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Somewhereinbetween - sorry there was no response to your initial post. We do care and want to be here for you. There are so many threads and if one is not in your favorites it can quickly roll off the active list and get missed I can say this for any (okay, most) member on BCo, that if you send a PM, especially when you just want a cyber-shoulder, you will get an answer. We do understand that even if you have a support system, if they haven't walked that journey then their support is limited, sincere as they probably will be. So, please, continue to read and post and let us know how you are doing.
Many HUGS.
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As a 39 year old black married woman with 2 young daughters 3 and 8, the last thing on my mind when I was diagnosed a few weeks ago was my sexuality. I've a PhD and I am involved in cancer research but if not for my surgeon, oncologists, sisters and husband, I would have had a radical bilateral mastectomy and ovariectomy as soon as I was diagnosed. Then I had to breathe and make rational decisions about this journey that I am now on. I have fear and frustration and irritation as the bills start to arrive. For the first time in my life, I have to slow down and take care of myself. Everyone keeps telling me how blessed I am to have caught this early. I don't feel lucky or blessed, just tired. I guess 2 surgeries in 2 weeks and all these pain meds will do that to you. In 3 weeks my life has been turned upside-down. Maybe in 1 year I'll worry about my body image but right now I am still sad about my diagnosis.
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browniefranks - just saw this and on the way out the door but wanted to let you know that you are not alone and your feelings are ABSOLUTELY NORMAL. "Everyone" has not been down the road you are now travelling so they just can't understand the emotional turmoil even an "early" dx puts you into.
And you are right, in 1 year you will feel somewhat differently, and able to handle it better but please understand that things have changed and don't hide it from them.
I would urge you to browse, cautiously, the threads here and if you want PM any poster here.(click on their name and follow the send message link) The support is there for the taking. Also, see if you have a SistersNetwork group that you can tap into for more local support.
Many HUGS.
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Browniefranks---sorry that you are here. I totally agree with Patoo's post. Ton of info on the boards. We are here to support. Hang in there and this too shall pass.
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2010 Treatment History....
May 24 - Went to a GYN appointment for uterine fibroids and doctor found lump.
June 2 - Breast ultrasound and Mammogram, discovered two clusters of micro-calcifications in left breast
June 9 - Met with Breast surgeon, she gave referral for biopsy
June 16 - Stereotypic Biopsy
June 21 - Diagnosis: 06/21/2010, Left Breast has DCIS, Grade 3 & IDC, Stage II, Grade 2, PR+ER+/ Her2+
June 30 - Lumpectomy, 2 cancerous lymph nodes removed
July 7 - Pathology report stated 11/13 positive lymph nodes; in addition, my margins are not clear.
July 14 - Met with medical Oncologist, he wants me to start chemotherapy before another lumpectomy or mastectomy surgery to clear margins. He gave me a BCRA test.
July 20 - PET scan
July 22 - PET scan results... 2 additional lymph nodes detected (possibly)... did not spread past lymph nodes and BCRA test results Negative...
July 24 - Muga test
July 26 - Port inserted
August 2 - Chemotherapy (hemoglobin 11)
August 4 - Zolodex shot
August 23- Chemotherapy, iron was given with chemo (hemoglobin 7.1)
September 3 - Zolodex shot (hemoglobin 8.6)
September 9 - Pelvic MRI
September 14 - Chemotherapy (hemoglobin 11.1)
September 16 - Flu shot, DNC Laparoscopy, to check for endometriosis (Negative)
October 5 - Chemotherapy and Zolodex shot
October 7 - FINALLY...uterine fibroid embolization... I went to the doctors about this issue when they found cancer...
October 26 - Chemotherapy
November 16 - Last Chemo
December 7 - Herceptin every three weeks to August 2011
December 13- Mastectomy / Delayed Reconstruction (was not given antibiotics?)
December 27 - Admitted for Staph infection (MSSA)
January 4- Discharged with a PICC line and a machine to dispense antibiotics at home.
January 20- Radiation starts (28 treatments)
February 28 - 28th treatments DONE
Tamoxifen (pill to be taken for five years)
Breast Reconstruction (Diep Flap) date to be determined... (Approx six months after radiations)
We are built to conquer environment, solve problems, achieve goals, and we find no real satisfaction or happiness in life without obstacles to conquer and goals to achieve.
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I just wanted to comment. I live in Idaho. There are not that many African American Women here, but what I will say is there is ALOT of older women who just do not take charge of their cancer diagnoses here. When it happened to me, I read and read and read about everything. to learn about what my pathology report MEANT and what having lymph node involvement MEANT. I went to a support group meeting last night. I was by far the youngest by 20 years. alot of women were years out of treatment. and it was daunting that some of these women did not have any clue what lymphedema was, what tamoxifen was used for (they just knew they were supposed to take it for five years), why you take tamoxifen. that there are different kinds of cancer (er+, or er- , her2+ or her2-). It's small town living up here, and people still don't talk about things like cancer. I'm from a big city originally. But wow! I was just in shock at how little women really knew or understood their diagnoses, much less what is or has happened to their sexuality!!
you have a powerful post and message.
p.s. lube lube and lots more lube!
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also, i hope i did not intrude onto this thread, i just found the message very powerful!
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hdangelbaby - positive comments are always welcome; goodness knows we have enough negative things going on.
Yes, it is a powerful mesage.
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thank you, I am feeling better. Things are becoming sort of normal now, a new type of normal.
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When I was first diagnosed I found it helped to just come and post because the positive vibes here are from people who have been there. You can make it, it just takes time.
HUGS.
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Hello to all of you and to my Sisters who have been on here a long time----Patoo, Rogam, Indomitable, these are afew of the names I recognize, it is so good to be back!! I have a lot of catching up to do, and just came in, where I thought I could fit in.
To all of you" hang in there" and don't give up on "this challenge", even though I have not been on, this "post" has been on my mind and in my prayers.
As for me I have been Blessed to have been doing pretty good. I am still getting treatments, as of Tuesday, I will be on Herceptin every three weeks and drop the Navelbine. The the neurothpy is getting "trying " at times, so we will give my body a break with the med Navelbine. My family is all well. I feel the prayers from the Prayer Warriors!!!
I will be back to post again, since my computer is up again. I have misssed you all dearly!!!
To all of the" Nubies"
that has to be here, we are sorry you had to meet us this way, but our hearts welcome you. I am coming up a "13 year survivor" come November---I am there!!! I say that, for you all to "Keep on Keeping on". To be able to talk to the other ladies on here has carried me a long ways, for different times. I always hope to be of help to someone else along the way.
The Topic: To Break the Silence----Heavy!!! I have found the body to go through all kind of changes during this journey as far as Sexuality is concerned. Sometimes it works, sometimes it does'nt, due to meds, due to emotions, and like anything else, "you do what you got to do to get by". We hope and pray to have a "sensitive mate" to go through this with us, and that can not always be. Sometimes there are "supplements" and" topic creams" that can be of help, it all goes back to "searching" for everything else that goes on this journey. That is my lil info.
Til later. Stay Blessed.
Linda C.
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iLinda - great to see you here and a super positive post, not just for newbies, but all of us.Thanks.
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Dr. Susan Love's group--ArmyofWomen.org needs African American women for a breast cancer study. I'm a member and have participated in 2 different studies--it's not
so much of finding a cure for BC but this group is focusing on finding the cause of BC. I encourage you to check out ArmyofWomen.org. They need all women to join to have a pool to draw from for different studies. Have a joyous day.
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Hi VJ, that group can contact the Sisters Network who, if they choose, can get the word out as they are a national organization with chapters nationwide (maybe in other countries as well - not sure). Sisters Network has been around for many years and is very knowledgeable about current and past studies. They are en excellent resource that should be on any groups list to contact in relation to African American women and BC.
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I happen to be about as white as they come, but I had triple neg breast cancer which is most common in black women and Jewish women. I'm neither (that I know of). If I hear of any black women with bc I am immediately interested thinking that they are 'like me'. You are right, i don't hear many stories of black women and breast cancer(thank God for Robin Roberts...) I think that there is a void that needs to he filled.
Brandy -
Thanks Patoo, great to be back!!
I hope all you ladies are having a great weekend!!
Linda C.
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@brandy...have you ever gotten a DNA test to find our your heritage? That may help in finding out why your cancer is what it is. I've read cancer is made up of many different diseases, so none of us will ever really know.
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women!! i may have something that may help all of us with the "sex" problem we are facing.
saw my gyno today and told her sex is painful (damn you chemical menopause!) and i have tried lots of different lubricants and they just seem to irritate me. she gave me some samples of "surgilube" it's what they use for the pap smears and other medical uses. she said she uses that because it doesn't irritate the mucous membranes like alot of other lubricants can, especially in us women who are put into menopause or have gone through menopause. she also said replense works well too, but i am going to try this first. she said if i liked it, she can call it into the pharmacy and get a tube of it, and insurance usually covers!(even better if it works!)
so, i will try it out in the next few days, and let you ladies know if it works well. i know what works for one won't work for another, but hell, if it helps a few of us, then that's alot to me!!!
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hdangelbaby,
Thanks for any information!!! I just add it to my "don't knows and just incases".
Linda C.
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alright ladies!!
today was the day.... to test out the "surgilube"
it is most definitely a few steps up from astroglide, for sure, there was no irritation, still having pain from the vaginal walls being thin, but it was alot better than it has been in the past!!!
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How is everyone doing?
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SHTBM, I'm good. Praying all is well with you.
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