Conversations:
Shakeya, thanks for talking to Conversations today. Before we talk about the exciting things UCAN is doing. Let me first ask you, what is endometrial cancer/ uterine cancer?
Shakeya Allen – Uterine Cancer Awareness Network
Endometrial cancer is cancer contained inside the body of the uterus. Most people know it as uterine cancer.
Conversations:
Yes, it’s often thought it as the same but there is a slight difference in the definitions that most people are not aware of . . . although true enough, they are used interchangeably.
Shakeya Allen – Uterine Cancer Awareness Network
Absolutely there are several versions and definitions of the disease depending on your diagnosis.
Conversations:
Yes. And uterine sarcoma is considered a different condition.
Shakeya Allen – Uterine Cancer Awareness Network
Absolutely.
Conversations:
Shakeya, how/ why did you start Uterine Cancer Network (UCAN)? And can you reference your URL so our readers can find you?
Shakeya Allen – Uterine Cancer Awareness Network
I started UCAN because I was diagnosed with adenocarcinoma at age 27, I was not aware of the disease because no one talked about it. I had symptoms early on but because there was no public awareness I didn’t know what it was. I made a vow that If I survived one day I would start an organization to bring public awareness to this disease! You can find us at www.uterinecancerawarenetwork.org
Shakeya Allen – Uterine Cancer Awareness Network
www.uterinecancerawarenessnetwork.org
Conversations:
That’s compelling. I know we talked about this before, but it’s stunning to me that there are hundreds of breast cancer non profits and virtually none for uterine.
Shakeya Allen – Uterine Cancer Awareness Network
There are none for uterine cancer and I don’t understand why. The uterus is a very important organ.
Conversations:
Yes it is. It’s very shocking. Do you think it’s just because it’s a personal thing that people don’t want to talk about it? Like that’s an area you don’t talk about?!
Shakeya Allen – Uterine Cancer Awareness Network
I believe so it’s such a private area so most women are afraid to talk about it but I believe if more attention was given to the disease and more public awareness women would know its okay to talk about these things. But the Doctors have to start bringing it up first and showing their patients and making them aware that this disease exists and the only way to get the proper testing is to bring up the symptoms to them.
UCAN has a saying if we talk about our breast why can’t we talk about our uterus?
Conversations:
Certainly true. Let’s pick up what you were saying. What are the symptoms of uterine cancer? What should women be aware of and concerned about?
Shakeya Allen – Uterine Cancer Awareness Network
Irregular periods is the main concern, pelvic pain, abnormal discharge, bloating, pain during intercourse.
Conversations:
Thanks for that. Uterine cancer, like most cancer, is generally very treatable if caught early enough. For early stage cancer, what treatments are available?
Shakeya Allen – Uterine Cancer Awareness Network
Depending on the stage there is radiation,chemo, and hysterectomies.
I say women are their best advocate and must make sure they choose the best methods they feel comfortable with. And ask as many questions as needed.
And if they don’t feel comfortable with a Doctor find a new one.
Conversations:
Many women are unfortunately diagnosed stage 4 and then treatment and prognosis can be sadly challenging.
Shakeya Allen – Uterine Cancer Awareness Network
Yes. Anytime someone is diagnosed at a late stage. It’s sad. But I say don’t give up keep your faith I have seen miracles done.
Conversations:
Yes and there are always new developments in treatment – immunotherapy, targeted therapy, stem cell transplants for lymphomas and leukemias . . .
Shakeya Allen – Uterine Cancer Awareness Network
I believe if more research and attention is given to endometrial cancer there would be more treatment options for us also.
Conversations:
Yes, it’s all about the research.
Shakeya Allen – Uterine Cancer Awareness Network
Most women don’t understand that our yearly PAP is not a screening method for uterine cancer at this point there is not one.
Conversations:
For breast cancer, for instance, there is targeted therapy for Her2+ which has turned a terminal disease into chronic for many women.
Shakeya Allen – Uterine Cancer Awareness Network
That’s sad, like you said it’s all about research. We have to keep up to date research because cancer is cancer regardless of where it originates.
Conversations:
Shakeya, turning to UCAN. Is UCAN local or regional or national organization? What are the objectives of UCAN? Is it awareness, support, research? What is your mandate?
Shakeya Allen – Uterine Cancer Awareness Network
UCAN is a national IRS approved 501c3. Our objective is to bring public awareness to uterine cancer while providing resources and support to those already affected by the disease.
We do that by trying to educate teen girls at the start of their menstrual cycle about the disease so they know early on what to look for as far as symptoms.
We educate women on what to look for as well as how to help monitor their daughters cycle as well.
We are providing free awareness posters to Gynecologist around the United States to help educate their patients also.
Conversations:
What types of programs do you have for education? Do you have any specific programs or initiatives that you want to highlight?
Shakeya Allen – Uterine Cancer Awareness Network
Since Covid, we have only been able to conduct virtual seminars. We teach nutritional information to cancer patients, we do virtual support groups for survivors to talk about uncomfortable issues such as infertility or sexual ou issues because of the disease.
Since Covid, we have been providing free masks to patients, caregivers, and survivors.
We provide UCAN bags to patients getting ready to have their cancer surgically removed. There are so many different areas that we are trying to contribute to because there is such a lack of awareness and support regarding endometrial cancer.
As funding progresses we will be adding our chemo bags to help women make it through their first couple chemo appointments also. Such as gas cards to get to their appointments, protein drinks on the days they can’t eat and other items as well.
Conversations:
Speaking of funding, how is UCAN funded at this point? Do you have annual fundraisers? Initiatives?
Shakeya Allen – Uterine Cancer Awareness Network
At this point we are only funded by my personal funds is how we have been getting by. We just started doing small fundraising events and soliciting for sponsors but because no one understands uterine cancer it’s hard to get support. Besides my personal funds we have gotten a few private donations which help out tremendously.
Conversations:
That’s very gracious of you to self fund this, Shakeya. How big would you say the UCAN community is at this point? How many women are you reaching/ touching on an annual basis?
I see you have a membership section on the UCAN site . . .
Shakeya Allen – Uterine Cancer Awareness Network
We were just IRS approved in September of 2019. We have a community of over 1000 women that we provide support for. We are striving to reach out to more women every day! And express the importance of learning about uterine cancer. But because they never see a commercial or posters in the Doctors they don’t think it’s as important as it is.
Yes. Our membership section is free it’s a community where patients and survivors can communicate and encourage each other.
It’s also a place where patients or survivors can ask privately for support.
Conversations:
Shakeya, where do you see UCAN going? What are your goals for the organization? Where would like to see UCAN be/doing in the next several years?
Shakeya Allen – Uterine Cancer Awareness Network
My goal for UCAN is to become the Susan G Komen for uterine cancer. We want to be able to bring so much more awareness to this disease, we want to be able to provide resources and support to those fighting this ignored disease, we want to be able to educate women and teen girls all over the United States especially in areas where there are disparities! We just want every woman to know if you have a uterus you are at risk!
Conversations:
Those are ambitious goals, Shakeya! Susan Komen has an enormous footprint!
Shakeya Allen – Uterine Cancer Awareness Network
I want to be the first to start the conversation and talk about the embarrassing things that come along with this disease such as infertility which I will never know what my DNA could have created all because of this disease so this fight is very personal. I want to talk about my irregular periods and how my cancer was discovered, I want to be the first to talk about my beard and mustache that grows because I was put into menopause at 27. I feel if I talk about another woman will feel comfortable and next thing you know we will all talk about it like breast cancer!
Conversations:
That’s powerful, Shakeya.
Shakeya Allen – Uterine Cancer Awareness Network
It’s the truth we have to get women to not be ashamed that’s the only way research can be conducted so that uterine cancer patients have the same treatment opportunities as any other cancer. But we have to talk about it!
Conversations:
Shakeya, thank so much for speaking with Conversations this afternoon and introducing UCAN to us. We are so excited to hear about your initiatives in uterine cancer.
