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What Women Want Today
What Women Want Today

Episode 76 · 4 months ago

Sassy with Style - Sylvia Sunstrum Talks about BRCA

ABOUT THIS EPISODE

Sylvia Sunstrum can be found on Instagram as Sassy_withStyle   

You can find her there talkiing about Menopause & Midlife. She is a motivational speaker who is inspiring women to take control of their health & embrace Menopause through educaiton, empowerment and humor.

Join me today as Sylvia shares her story of her family's history of Ovarian Cancer and the tough decisions she had to make during her journey.

Listen in as Sylvia and I discuss the BRCA gene, her diagnosis of Breast Cancer and her personal choices for her own healing.

Please share this episode with the women in your life.

Join me on IG and FACEBOOK 

You can always email me @ terri.kellums@gmail.com

Hello and welcome to what women on today podcast. You might be asking yourself right about now. Well, what do women want? I mean we're pretty complex creatures, right. Well, I think we want it all, and I'm here to explore it with you. My name is Terry Kellums. I'm your host. Go grab your favorite beverage, I've already got my glass of wine, and let's get started. Hello and welcome to this week's episode of what we want today podcast. I'm your host, Terry Kellums. Today I have with me Sylvia's Sunstrom. Did I say your last name right? Sylvia good good. Sylvia is known as Sassy, underscore with style. On instagram. You can find her. They're talking about menopause and Midlife. She is inspiring women to take control of their health and embracement of pause through education, empowerment and humor. Sylvia, welcome to the show. Thank you so much for joining me today. Thank you so much for having me, Terry. So, Sylvia, we are connected through Instagram, like you make connections with a lot of women these days. Correct, yes, correct, and we we sort of both moved into in the space of just wanting to celebrate midlife instead of dreading it, and we're both here to encourage women to, Um, just sort of make this the best part of their life. How do you feel you kind of set on this path? Like what got you to where you are right now? Okay, we don't have a lot of time. Um, there was a few things. So, what got me into menopause and this path of midlife and and menopause in the first place was that I had an ufrectomy eight years ago so, and Ufrectomy is the removal of of your flopian tubes and your ovaries. And so, if we go back one more step, why did I do that? Well, I did that because I have gene mutation called BRACA one. And what does that mean? So, Um, my mother passed away of Ovarian Cancer Sixteen years ago and at the time not a lot was known about ovarian cancer and it's actually known as the silent killer. There aren't signs and there's no Um screening that can be done for ovarian cancer. So when you have it, yeah, when you have it, it's too late already. Oh my God. Yeah, yeah, so, Um, I wanted to learn all the information I could about that while my mom was going through the ovarian cancer and then while she was going to the doctor. UH, one time some doctor came and said, would you like to do this test and it'll help, it'll help your daughter. And of course she was, you know, all about helping me and making sure I was going to be okay, and she said sure. So she had passed before we got the results of the tests, and the results of the test were that she was a positive carrier for this gene mutation, this Braco. whathe so what does that mean for for her children? That means that we have a fift chance of carrying this gene mutation, and the gene mutation in a nutshell, basically means that I have a higher than average chance of getting ovarian cancer and breast cancer than the average female population. Um. So it's increased my risk. So what can you do? While you can be preventive, you can be proactive, Um, and one of the things you can do is have a double missectomy and have your healthy breasts removed and have an Uferrectomy and Um have your ovaries and your Filippian tups removed as Ann and that's what Angelina jolete did, right correct. So a lot of times when I just say I have the gene mutation. And then I go Angelina Jolie. People go right, but she did it the other way. So she had her breaths removed. So she had a double insectomy first and then she, I guess, had had her children. I was forty...

...nine. I was finished having my children at that point. And again, to me, I could still screen for breast cancer. I felt that I was living a healthy lifestyle. I was trying to be preventive and proactive in the healthy lifestyle uh genre at that point. But I couldn't accept that there was no screening for ovarian cancer and that it would be too late already if I found out I had it. So that's why I went ahead and had this operation. So what happens with that is they remove your ovaries and your flopan tubes and you are thrown into what's known as surgical menopause. Yes, and I have not really talked about surgical menopause here on the podcast before. We've talked a lot about like what age did you go through it and that type of thing. So do you know being a surgical menopause woman? Um, what the differences are like? What would you experience as a surgical menopause. Woman that might different from regular. Went through it regularly, right. Yeah, yeah, what is regular? And so so even the word perimenopause, Perry, just means around around the time. So a lot of women are saying, well, I don't know if I'm perimenopausal, I don't know. Well, if you're a woman and you're going to be going through menopause, you are in your forties, possibly even thirties. Some women I've talked to you are around the time of menopause Um, which usually happens, you know, twelve months after your last period. Well, you know t m I, but I I literally had my period still the day that I went in for surgery, and and and so. I mean I I didn't experience any symptoms per se, like hot flashes or or irregular periods. I mean the periods were getting heavier. As you get into your forties, you know, your periods change, so that would have been maybe a sign, but nothing. Nothing like no hot sweats. No, I mean I'm a loud person, I'm I'm assertive and whatever anyway, so that wasn't like mood swings. You know, it was crazy like that. When I actually had my ovaries removed, honestly, like that night I was losing my mind. I was sweating profusely. I was like talking to myself, trying to calm myself down. My heart was racing. I uh, you know, I I was hot, I was cold, and then I chalked it up to the surgery because I hadn't ever had general anesthetic before, so I thought maybe it was the anesthetic. So I was trying to calm myself down. But Oh my God. You know, that year of going through that was a huge trial and error on my relationship with my husband, you know, with my coworkers, with my kids. My coworkers were made up of more women, so it was easier for me to say, Hey, guys, I'm sorry if I'm losing it more than usual. This is what this is what's happened. Um, but with my husband to like he's like, why are you yelling, like I'm right here, you don't need to you know, and and I just I just got so frustrated. And so I think with surgical menopause, to answer your question, everything at once, every whereas with with someone going through menopause, it's gradual. It's little sprinkles here, it's little noticeable things there. It's changes there, which which is what it should be. It should be like a normal thing that our body is going through with surgical menopause. They you have no your estrogen levels are you know, and m even your testosterone is affected and and a lot of women don't realize that we actually need to stosterone. So it's a matter of that balance. Yeah, so two questions there. Um, we'll get back to the test asterones. Remind me if I forget, because you know the menopause brain right. But so when you're a surgical menopause Um woman, do you talk about that to your girlfriends, like, you know, we talk about this on the podcast, like there are certain women who say, you know, yes, I have the supportive group of girlfriends and women and Co workers and family members...

...that I felt comfortable talking to about what I was experiencing. And just as many other women that say no, I didn't really have anybody to talk to about what I was going through. So what was your experience with that? My personality is the more people I talked to, the more I can form an opinion for myself and and educate myself and and further go down into into the education of asking questions from doctors, et Cetera. Having said that, again, with the whole surgical menopause thing, uh, the more I talked about it, the more women would come out to me and say, yeah, I had a hysterect to me ten years ago, I know what you're going through, but it was all in a very quiet voice and shameful. Yeah, you know that that which shall not be named. You know, uh UH. So I was just like, what do you mean? Like, and now I understand why my co workers in their fifties and sixties that I was working with, I live in a very cold place in Canada. In the wintertime it's like minus forty five with minus two thousand windshield like I'm kidding, but I mean it's cold. It's it's flipping cold here and there. And you know, I'm walking in with my surrowse and my scarf and my hat and everything, and they got their sandals on with bare feet and I will go like, what is wrong with you? What's wrong with you? You'll find out, dear, you'll find out, dear. And everything was in a hush hush voice. So until I started telling everybody, Hey, guys, I'm going for surgery, hey guys and La, la La. But you know, my doctors told me that this was a preventative surgery and good for you and and you know you're being proactive. But nobody sat me down and said, Hey, this is what you can expect after you have this surgery done, and would you like some counseling, because maybe this is going to affect your relationship with your coworkers, your husband, your children or whoever? and Um, none of that. Such a crucial missing piece to this whole thing that women go through right is where is the emotional mental support for this? You know, we're we're still struggling, I believe, in our society to kind of embrace and make mental health more of a normal conversation. So add to that the that the woman almost feels, you know, Um, shameful or that some suddenly she's lacking in some way, less than, less than Um, like our usefulness has, you know, has has been, you know, fulfilled, you know, like there's nothing left for us to do now, you know, a sort of mentality. So yeah, I mean that uh, he hit hit maail right on the head. We need more support, UM, when we're going through this. And you know what our husbands needed to because just what you said, you know, like all of a sudden he's seeing this different part of his wife that he's never seen before and he's like what the heck? Right, very much a big clue for my husband when, Um, I was having a moment. Tell call it is when we would be driving down the road. Now I live in Arizona, so you know, our temperatures are nowhere near as extreme a Jors, obviously, but it still gets pretty cold here in the winter for us people who experience one plus temperatures all summer. But I would would be driving in the car, in his truck in the middle of winter and all of a sudden I would hit the little button to make the window go down. He would just kind of look over at me and I'd just like be like Yep, it's happening, you know, and he felt compassionate. I can tell that. He he felt, you know, like Oh gosh, she's going through this, this kind of it's awful and kind of sucks for her, but he didn't know what to do about it. Yes, you know, he didn't really know how to support me through it. You know. Yes, absolutely, and I think because you know men like to fix things right. They want they want to make things better. Um, the conversation is that much more important to like. Sometimes you don't have to fix things. Sometimes I just need to vent at you and this is what my body is going through. I have no control over it. Just sit there and listen to me vent. I know you're not my girlfriend, but this is going to affect you right now and and this is what's happening, or stop talking to me, please leave the room. I need to be honest right you know, because I'm having a mouth and you know, and part of that is our response disibility to tell them when we're not in...

...the middle of something like this. Is How you can support me in these moments, you know, and just having that communication. So, while we're talking about men, it reminded me of my distaster on question, which is Um. So when you're surgical menopause, are you or and maybe this is a two part question, if you're be let me see, B R C A, Brecca right, breast Brecca one or two? Um, are you able to take h RT? You know, that's a good question and I think it's a personal question for for all women. Um, I just chose not to go that route. I just wanted to be as natural and experience it and go through it. You know, God bless my family, as much as I as much as I could control it. So it was, like I said, a year of of of growth and learning and uncomfortable things. But I mean I'm nine years out now and I'm good. I'm I'm good. But a lot of women will try to go the natural way per se and then they can't. So they do have to go on the HRT just to get them, get them over those mood swings or anxiety or whatever it is. Now, with relation to the actual Bracka Gene, uh, and the HRT and and all that stuff, I really don't know. I don't. I mean it's a gene and and and a gene doesn't necessarily like it can it can be not manipulated. That's not the right word, but it isn't the end all be also, just because I had this gene and it increased my chances and in the end I did end up getting breast cancer, but it doesn't mean that it's like the but I can't find the word. I don't want to say the death sentence. I think that, but it's it's not like it's. It's the ultimatum. Like you know, you can, you can, you can. Lifestyle and environment and attitude and and lots of combination of things still determine the outcomes of things absolutely for your health. Yeah, so here's what I've got from my audience today. Of of of the general population of women will develop breast cancer in their lifetime. It's hard for me to read these statistics. It really is Um. Fifteen to seventy two, fifty five, I'm sorry, fifty five to seventy two. Um. Who Inherit the harmful? So this is what I understand about BRACCA. Um. When you are born, you are born with two sets of these genes, when you inherit from your mother and when you inherit from your father. No one is born with two sets of harmful or the the Um? What's the word? The the likelihood that you will develop cancer? Um, because you have these genes, because those embryos most likely do not thrive and make it. So Um, forty five, let's see. So fifty five to seventy two. who inherit the Bracca one, which is what you had, and forty five to sixty nine, who have the Bracca two Um will develop breath cancer by the age of somewhere between seventy and eight years old. Um, this is sad. and Um, so you received that diagnosis which I think a lot of women fear and wonder how they might respond to it. So thank you for being brave and coming on and sharing your story today. Um. Is it less emotional for you now than it was back then? Are you able, if you're going to get emotional? Sorry, I'm an amath. Um. Um, yes, it's less emotional because for me, I've to I learned from it and and and this is just my personal thing. Um, I I feel that what you put out into the universe you get out. So, because I kept saying, I don't want to get breast cancer, I don't want to get over in cancer, I don't want to the universe is focusing on cancer. Captain. Yeah, don't part in my world. Right. So, so I feel that there was...

...a lot of healing to be done in my generation, my my my mom's mom, SOM my maternal grandma. They don't know she passed away of a woman's disease. So let's call that ovariant concert. My mom passed away of ovarian cancer. My Mom's sister has ovarian cancer, had ovarian cancer. Um, so it stops here. It stops here. So I'm doing my healing, I'm doing my generational healing and I it was brought into my body for a reason and I caught it very early on. It was stage one. I found it. I do self rest examinations monthly and I've gone for mammograms every month as well since my forties because of my history. Every month or every year, part of okay, every year, God, check myself every month, go for mammograms once year. and Um, I found the lump and uh yeah, so it was like, you know, to me, the university, here you go. You know what are gonna do with this? You have to face this. Now you have to face this. So what are you gonna do? Do you think you grieved? Do you think you would do absolutely, Oh my God, Um, I didn't sleep for probably a week. You know, everything went through my head. I was a mess, I was I felt Um, you know, you're looking for answers, and it wasn't the why me? I knew why me in the sense that I carried the gene and Gosh, Jarnett, you got me kind of thing. But I was looking for answers. Okay, I have it. Well, let's that's it. We're done. Let's stop this. How we're gonna stop this? What are we gonna do? and Um, because I wanted to work with with with a team that was a healthcare team, not just UH medical, western medicine team. I wanted to work with an int integral healthcare team. That was difficult because they don't like talking to each other, and I'm not gonna say which one doesn't like talking to to the other one. But so when I was talking two different natural past etcetera, uh, they were all the main thing they said is this is a scary thing. You need to process it, but you need to move on, because if you don't sleep and if you don't get your rest, your body is gonna, you know, not be able to heal itself. And right now you're in fight or flight mode and and you need to you need to rest. You need to rest. And so I did grieve and and I grieve for everyone. I grieve for myself, I grieve for my future grandchildren. I grieve, you know, for my children. I have two boys, so if I had, if I had perhaps daughters, it would be a different story. But I mean they car they can carry the gene as well. Man, you have breast cancer as well, Um, but I grieve for everybody, my mom, my grandma, and then that's when I looked into generational healing and different modalities of helping myself to heal. Now I'm not out of the woods. I actually got um a very aggressive form of breast cancer which is known as triple negative breast cancer. Um. So it's not hormone fed per se, and they like to what I call throw everything at it, even the kitchen sink. So Um. And with any cancer, they, the doctors, give you a five year survival rate. So you have to get through that, that five years to be able to say beat cancer. But in my mind and in my heart and in my world right now, I've I've beat cancer. Cancer was here to teach me a lesson. I am learning. This is an ongoing process. It's a chapter in my life, but is it is not going to consume my life. And and other than that, which you just said very beautifully, Um, what other mindset changes do you think you or or other women who have gone through this? What kind of mindset changes did that lead to? Like did you? Did you start doing things differently? Did you live a little differently?...

Like tell me about how that works for you. Um, I'm not sure if I lived a little differently, but I was more more open to two things, Um, and and even with my husband, like, Um, uh, you know, reaching out to angels, reaching out to my angels. Look, looking, looking at angel numbers around me. Um, I got a book on how to communicate with your angels around you and it came in Amazon and I ran and I opened it up and my husband's looking at me and so, Oh, you got a new book. I said Yeah, and he says, let's see, and I showed him and I was embarrassed for a second and uh, I said this is going to help me, and he said whatever's going to help you, I am here for you, you know. So I think just and it wasn't like I was hiding it, it wasn't like you know, but but still, like, I mean, I'm a religious person. I I believe in in God, I believe in spirit and I believe in angels and I believe in Astals and I believe in in the universe and everything that can that can help you. So I think I just opened up. I opened up more, Um and and accepted things coming into my life as lessons or blessings and I looked at it that way. I think that's beautiful and it's something that I've talked about here before. Is, you know, like exposing yourself to resources and maybe the first time you hear it you might think and then and then you go. But what if, like if that is the thing that can, you know, make this change in my life? So I'm very open to that as well. And, Um, that's amazing and awesome. And your friends and family, I imagine we're a great support to you. It sounds like your husband was very supportive. It was hard. I was diagnosed during lockdown. I actually lost my actually lost my job. So I was at a job for twenty years. They just continued my position. Um, then I was doing all the paperwork. I just squeaked by. I turned fifty five, so I squeaked by and because I was in an unionized position, I could bump people. So I said I'm not going to bump anybody. I feel horrible losing my job. How about me walking up to somebody and saying you're out, I'm in because I have more seniority. So I asked if I could go for retirement if I was eligible. So I was eligible for retirement. So I ended up retiring and then got all the paperwork in place and then was diagnosed with breast cancer. So not even able to really go back and and and use my benefits, if you will, for for any of the treatments or or, you know, sick time or time off or anything. Well, help us understand that a little bit. Something in the United States, you know, where our health care system is different than yours. To help us understand those of us who live outside of Canada. How does that work for your health care system? So you had benefits through your job, but then there's also like Um, right. Yeah, so I had benefits through my job. So if I was still working, I would have had a certain out of paid sick time off, so I could have gone for my surgery and Um still been guaranteed my position to come back to and taken that time off to heal and go through the surgery and gotten paid a certain amount of time for that, and then any medications that I needed would have been paid at a certain percentage with regards to my spending account or my health account through work as well. Now, through through losing that. Uh, we still have a healthcare system in place where we're not paying every time we go for surgery. So then I was covered under that umbrella. So, UM, yeah, so Canadian citizens have both. But a lot of times, uh so, for example, the medication. So, so it depends on what you choose as well. So I chose to have a lump ECTOMY, so I chose to not have a double miss actomy. And and uh, I chose to have a lump ectomy, so they removed the cancer surgically in my breast. Now, if I chose to have a what...

...if I chose to have a double missectomy? Then, Um, uh, lots of medications, uh, special surgical braws afterwards, things like that. All that stuff costs money and that's not paid for. So that's all out of talket. Okay. Yeah, okay, so that's a big decision. You have to make it. Yes, and and and chemotherapy and and things like that. So a lot of it is covered, but a lot of the medications aren't covered. If you're not feeling well, etcetera, etcetera. So yeah, Gotcha, Gotcha. Yeah, and Sylvia, so you have taken Um Lemons and made lemonade. I'd like to say, and so I would love it if you would share Um. How are you using your experience and you're just overall outlook on life now to give back to other women. Share with my audience how you're doing that. I just want other women to know that this is such a beautiful stage of our lives and and and, just like you know, getting your mensies and becoming a woman and then, if you have the opportunity to carry a baby and have children and be a mom is another beautiful stage and phase in our lives and you know, celebrated. Menopause, Midlife should be celebrated. Absolutely. It's another phase of our life. It's another chapter of our life and a lot of women are living into their eighties. So imagine this is another thirty years of our life like this. This is great. This is a this should be an awesome celebrated time. The kids are grown, you have a different relationship with your family, maybe our grandparent, you don't have your period anymore, vacation whenever you want and Nester me, you know, some some women are just moving up in their career and deciding what they want to do and it's it's not to be whispered, it's to be celebrated this time in our life. Absolutely, and, like I said, I'm a coffee drinker. So actually I take lemonade and turn it into coffee. I love that. That's what I like. And I think just to live healthy and educate yourself. I think educating yourself and doing your own research is so important. Don't take anything at face value. Please, please, do your own research and do what's best for you and and even if it turns out that that's not what's best for you at that time, that's the best decision you made at that time for yourself. So absolutely, yeah, absolutely, and I notice on instagram you are doing a summer lunch and learn program tell us a little bit about that. Yeah, so this summer I started at the end of June and we're going to go into August. Lunch and learn and it is based on menopause. Is So there are so many symptoms of menopause. So each week I'm going to have a different guest on and they're either by experience or by education and expert at what they're talking about, and lots of great topics and I've actually saved in in my feed so you can go back to the very first one and and play them, and they're all half an hour because, you know, I encourage people to go outside, go for a walk, put your earbuds in and listen to the to the live podcast. I love it and I said it at the beginning. But do you want to share again where they can find you on social media? Sure, Sassy, underscore with style. Thank you so much, Sylvia, for being here. I have one last question for you today, based on the name of the podcast. What we want today? What do you think women want today? Oh, whatever we can get. It's a great answer. It's a great answer. I'd like to say. I think we want it all, so I think we should go on it all. Very much. So, Sylvia, thank you so much for being here with me today. I look forward to stay connect with you on instagram and absolutely enjoy the rest of your day. Thanks, Terry. Thank you so much for joining me. I hope you've enjoyed today's conversation as much as I did. If you'd like to continue the conversation, come on over and join our private pace book group. What women want today.

I'd love to hang out with you some more there. Any resources mentioned in today's episode will be in the show notes. You can find me on facebook and Instagram at what women want today podcast, or visit my website at what women want today Dot Com. Please remember to subscribe, download and share. Leave me a review. It helps other amazing women find the show and become a member of our community. One last thing for you today. You are not alone. You are worthy of love and a fulfilled life. Now it's time to go after it.

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