Before my mom was diagnosed with metastatic disease, one of those neighbors told my mom about her daughter. She lives in the Bahamas. One year ago, she was diagnosed with breast cancer. Invasive lobular. Just like me. We spoke and we've been in touch via email.
Kathryn de Souza just sent me an email about an event that is taking place in the Bahamas. I want to share that but first, about Kathryn, in her own words (italics emphasis is mine)
Last October, when I was 48, I noticed a thickening in my right breast while taking my newly adopted 10 year old daughter and the rest of my family to Disney World. My gynecologist was not impressed, but ordered the mammo, since it was 1 year since my last one.
I had fibrocystic breasts, so over the last several years I have had many mammograms, ultrasounds, MRI's, cyst aspirations and a core biopsy of the left breast, which were all negative. Unfortunately, the mammogram in October was not.
I live in the Bahamas, so I traveled to Florida, where further workup was done including a biopsy which revealed lobular carcinoma. I decided to have a bilateral mastectomy as lobular carcinoma frequently reappears in the opposite breast and as my cancer had proven to be, it is difficult to diagnose. I found an old mammogram result from 5 years ago which stated "patient notes thickening in her right breast".
I had a nipple sparing bilateral mastectomy November 13, 2013, with immediate implants. My lymph nodes were negative, but the tumor was quite large, 4.6cm, so I am glad that I opted for the mastectomy. Oncotype Dx testing was performed on my tumor. It was found to be Er+, Pr +, HER2 -, with a recurrence score of 10, which is very low. I chose not to do chemo, as the oncotype dx testing revealed that there would be no survival benefit from doing chemo. I am taking Tamoxifen, which I have tolerated well.
I just returned from my 1 year follow-up and all is well.
Just a side note, I have an extensive paternal family history of all types of cancer, especially breast, but all my genetic testing including BRCA were negative.
Two comments..... maybe three. Notice how Kathryn mentions what she found in a mammogram from years before her diagnosis. SHE noted thickening in her right breast. Lobular is a slow grower. And it's known for its sneaky nature. It surely seems the cancer in her breast was already growing but was undetected for years.
There seems to be some interest in exploring a paternal link with lobular breast cancer. I read it in an article several months ago and I'm sure that article has been printed and filed somewhere in what I've attempted to organize. A google search turned up this article about the observational study that appeared in BioMed Central.
Lastly, I remember discussing Onco-Dx with Kathryn. If memory serves me, her doctor's initial feeling was "Chemotherapy, definitely." This was based upon the size of her tumor. When her score came back SO low, her doctor did a complete about face on the chemotherapy. I recall sitting in on a discussion in San Antonio where tumor biology was beautifully explained by Dr. Martine Piccart. Kathryn's decision to forgo chemotherapy and the subsequent support of her doctor was a decision based upon evidence.
I also want to thank Kathryn for including me in the following email. Not only did I learn about the increased risk specific to Bahamian women, this event is a prime example of grassroots done right and a stellar show of community support.
Most importantly, I'm eternally grateful to Kathryn for sharing her story and for giving all of us a glimpse of just how a community can and should come together.
Once again, emphasis is mine.
As most of you are aware, I was diagnosed with breast cancer one year ago. I am doing well and just received a clean bill of health at my one year check up!
Many of you know that my family has participated in the Ride for Hope Bahamas since its inception in 2006. This is an incredible event- none of the funds raised goes to event organization. All of the funds go to several outstanding cancer related programs here in the Bahamas.
The Bahamas has the highest incidence WORLDWIDE of BRCA gene mutation, which predisposes women to breast cancer. BRCA gene mutation breast cancer is extremely aggressive, which is why you have heard about some famous women undergoing bilateral mastectomies when they find out they have this genetic mutation.
The Breast Cancer Initiative of the Bahamas has a screening program so women can determine if they have the BRCA gene mutation. Ride for Hope Bahamas provided substantial start up support to the Bahamas Breast Cancer Initiative (BBCI) - a multi-player program under-taking promising research into the mutations of the BRCA1 gene unique to The Bahamas. RFH's grant to BBCI & its partners at the University of Miami Cancer Center have helped fund this critical scientific work.
Hopefully this research will be the first step in overcoming the terrible legacy of aggressive and deadly breast cancer, a leading cause of death in Bahamian women. The statistics gained from studying the Bahamian population will be extremely useful to all women who are suffering from the BRCA gene mutation.
Because our population is at high risk, early mammograms are a necessity, and a luxury that is not available to many women, particularly those living in the "family islands" where there is limited medical care and no mammography machines. Ride for Hope has started a program for family islanders to come to Nassau for their screening mammogram.
The day trip includes a lecture on breast cancer risks to Bahamian women, a tour of the Cancer Caring Center, a light lunch, and the mammogram screening. Early screening is a proven method in early diagnosis which leads to dramatically higher survival rates after treatment. Over 1,100 Bahamian women in under-served communities around The Bahamas have received a mammogram, and, when necessary, a follow-up, but many more are waiting.
Another outstanding program that Ride for Hope sponsors is the Cancer Caring Center. This is a place for individuals diagnosed with cancer from the family islands to stay in Nassau to receive their chemotherapy and radiation treatments. This extraordinary facility, available to ordinary citizens, is described as “a place where pain management is understood and medical attention provided in a setting of beauty, tranquility and personal freedom, a place where family members can visit and linger.”
Sadly in high demand, the Center usually maintains a waiting list. It is a special place, worth visiting, and certainly worth supporting. A gift from the Ride for Hope to the Cancer Society of The Bahamas was used to pay off the Cancer Society's mortgage, incurred during the construction of the highly-praised Cancer Caring Center.
Created by Ride for Hope Bahamas, the Treatment Assistance Fund is administered by the Cancer Society to assist Bahamian cancer patients in financial need, making care more accessible to many patients.
Ride for Hope also funded the completion of the Cancer Society's HQ and clinic in Palmetto Point, Eleuthera. Eleuthera is just one of our family islands that has limited medical resources.
As you can see, this is a very worthy cause. As a recent cancer survivor, I would be honored if you supported my family on this ride. If you go to the website www.rideforhopebahamas.com and click on sponsor a rider, you will see an option to sponsor a family. Type in de Souza (don't forget the space!) and you will be directed to the sponsor page. It is a tax deductible donation for all of my American friends and family. For my Bahamian friends and family, I am happy to collect donations from you, or you can bring them to my home or office.
Thank you so much for your support of this event, and for my family as you have journeyed with us on our personal ride for hope this past year!
Two comments. Maybe three? Corporate sponsors have underwritten the costs of this event. Do you even SEE their names on the event page? NO. They are not splashed all over the page. That's corporate done right. The event proceeds ALL go to cover the needs of the community. In ONE event, they are funding research, helping the underserved, performing screening and BRCA testing and have helped fund a facility where treatment is administered. One event and they pretty much covered it all.
I'm impressed. I think we in the USA can learn a lesson if we borrow a page from the Bahamas. And Kathryn is one special "sister" .... and for that matter, so is her mom... for being so good to mine.
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