Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
New here
Hello! Sitting here trying to type out my story thus far is challenging. I'll start from where I believe is the beginning.
I am 34 years old, recently married to the love of my life and have no children. I began having lower abdominal pain in March of 2020, right around the time the COVID-19 pandemic was declared. I was laid off from my job, spending my days at home, rather sedentary when I began noticing the pain. It started out as little twinges throughout my belly, never on the same side, same intensity, same duration. I still got my period every month for the same duration and flow. I chalked it up to the stress of the pandemic, not working and the fear of the unknown. I went back to work 6 weeks after the initial lockdown and the pains continued. Again, I chalked it up to the stress of the environment I was working in. These pains would sometimes be a small ache on my side or have me doubled over crying. I chose to ignore the pains as COVID had made all appointments with doctors so much more and I didn't want to think anything could be wrong with me. I felt relatively healthy other than the weight that I was gaining. Again, I blamed COVID-19. I didn't feel sick at all.
Flash forward to July 2021 when I finally give in and call my GP and tell him about the aches and pains. He asks where the pain is happening the most and I tell him on the lower right side of my pelvis. Of course, this is a phone appointment and he can't determine what could be causing this type of pain. He asks me if I could be pregnant and I tell him no and he asks how I could be sure. I tell him I just started my period and he is concerned that it may be an ectopic pregnancy and asks me to take an at home pregnancy test. He also sends me for blood work and asks me to come in for a physical appointment later in the week. I get the test, take it and it is negative. I go and get my bloodwork done as well. During the appointment he palpates my stomach and pelvis on the right side, where he says he can feel something, but suspects it could be an ovarian cyst. He asks if my husband and I are sexually active and/or trying to get pregnant. I tell him that we are and that I am trying to get pregnant. He determines I need an ultrasound. He asks me if I feel sick at all besides the pain, weight loss, loss of appetite, anything and I say no, other than gaining a lot of weight and he asked how much I've gained and I couldn't be sure, but my stomach is extremely large and hard. So at the end of August, I go for the ultrasound. They do an external and an internal exam and I am on my way. A few hours later I get a call from my GP telling me they have found a mass on the right side. I broke down crying with a million questions running through my mind. Was it cancer? Was it a cyst? How long has it been growing in my guts? What's the plan now? He immediately sent me for a CT scan 2 days later and asked me to call his office when the test was complete. Again, a few hours later I got a call from him and he let me know that there were 2 large masses in my abdomen. The mass on the right side appeared to measure 24 cm x 6 cm in length and the one on the left measured approx. 15 cm x 4 cm. This is why I was feeling aches and pains throughout my sides and pelvis. Though he couldn't be sure, it appeared it could be ovarian cancer and he was sending a referral to a gynecologist.
My case was immediately referred to a gyne oncologist and in mid-September I met the oncologist. It was a surreal experience. I still didn't feel sick, I just had pains in my pelvis. I don't have cancer, right? The gyne onc's couldn't diagnose anything because they didn't know. The only way they could be sure what was going on inside my belly was with surgery. So at 34, newly married, I had a really tough decision to make: have surgery to remove both tumors, ovaries, tubes, uterus, etc and put myself in early menopause with never having children of my own, or allow them to take the larger tumor and one ovary, do pathology and see what it comes back as and possibly endure a second surgery removing everything any way. How do you make this choice when you thought your life would include children of your own? It was devastating. No one could help me make this choice and the oncologist wanted an answer for surgery in 1 week. My husband and I argued about the course of treatment because we both wanted children and I felt extremely selfish for wanting to live a long healthy life, and wanting to give up any chance of carrying my own children. We were referred to a fertility specialist who, although was very thorough was not optimistic that even removing the larger tumor there would be any viable ovary to harvest eggs from. So I still had no answers. I was lost in a sea of what if's. What if I have surgery and they take everything and it's not cancer? What if it is cancer? Tumors this large couldn't be a sign it was an early stage cancer...So I decided that I would ask the doctors to take the larger tumor and 1 ovary and try to preserve fertility UNLESS they got in there and it was much much worse than they thought it to be. I signed the consent for surgery and walked out still unsure of my decision. It felt like the best compromise of the choices, I could be okay with that...right?
I guess I should mention as well that I am an early childhood educator working in an early learning environment with children as young as 8 months old and as old as 5 years old. It was extremely difficult to go in to work every day with parents telling us they are expecting again and feigning excitement knowing that will probably never be me. My stomach was so distended it began to look like I was pregnant and I even had a parent ask when I was taking time off, because you know, the pregnancy...That was a difficult discussion to have and they walked away red with embarrassment when I said I had some "medical issues" that was causing my stomach to look like that.
I finally got the date for my surgery and it was November 4th, 2021. It felt like I was finally going to get some answers. Everyone that knew what was going on kept talking to me as if I was dying and looking at me like I wasn't coming back to work. I just wanted to scream "I'M NOT DYING!!!" at everyone but I knew that wouldn't help. After all, I very well might be dying, no one could tell me either way. Then I get a call: my oncologist had broken her hand and my surgery was pushed back. Thankfully, they were able to reschedule it for 4 days later.
So Monday November 8th, at 6:15 in the morning, I had to admit myself to the hospital. I was so scared because I didn't know what they were going to find and my husband couldn't be with me. My anxiety was at an all time high and when they took my blood pressure it was 141/100. I asked if I could at least have my phone with me so my husband could hear what the new oncologist and anesthesiologist's plan was. It the kindness of 1 nurse who was able to convince the doctor to let my husband come up and be with me while they discussed the plan. I don't remember much of the conversation, but having my husband with me definitely helped ease some anxiety. They were going to try and preserve fertility if they could. And then I don't remember getting wheeled to the OR but my husband says they asked if I could walk to the table and get on it and apparently I said yes. I woke up 3 hours later in recovery, groggy, disoriented and wondering what happened during surgery.
When I finally got on to the ward, my husband and my mom were both waiting for me and I don't remember much. My doctor came in to tell me again what happened during surgery (he told me after surgery, but I have no recollection of the conversation). I'm glad I had my mom and my husband both there because I recall very little from this conversation as well. He told me he was certain it was epithelial ovarian cancer and they actually removed 3 tumors from my belly: 1 the size of a large watermelon, 1 the size of a smaller watermelon (akin to the size of a cataloupe) and a smaller one from my omentum the size of a baseball. They also found some small tumors on my bladder and rectum and were able to scrape them away leaving both intact. My doctor was hopeful it was borderline epithelial cancer and I would only need surgery as a course of treatment and then monitored every 3 months for the next 5 years. He said it could possibly be low-grade epithelial cancer in which case I would need chemotherapy as well. In the hours after surgery I must have asked my husband to tell me 4 times what the doctor said. It was hard to comprehend then, and even today 1 week later: I have cancer. I still don't feel sick, not like you'd expect someone with cancer to be. I have energy, I want to go back to work, I want to be busy but I am waiting once again. I feel great, almost like myself once again, finding myself getting stronger every day.
I am 34 years old, recently married to the love of my life and have no children. I began having lower abdominal pain in March of 2020, right around the time the COVID-19 pandemic was declared. I was laid off from my job, spending my days at home, rather sedentary when I began noticing the pain. It started out as little twinges throughout my belly, never on the same side, same intensity, same duration. I still got my period every month for the same duration and flow. I chalked it up to the stress of the pandemic, not working and the fear of the unknown. I went back to work 6 weeks after the initial lockdown and the pains continued. Again, I chalked it up to the stress of the environment I was working in. These pains would sometimes be a small ache on my side or have me doubled over crying. I chose to ignore the pains as COVID had made all appointments with doctors so much more and I didn't want to think anything could be wrong with me. I felt relatively healthy other than the weight that I was gaining. Again, I blamed COVID-19. I didn't feel sick at all.
Flash forward to July 2021 when I finally give in and call my GP and tell him about the aches and pains. He asks where the pain is happening the most and I tell him on the lower right side of my pelvis. Of course, this is a phone appointment and he can't determine what could be causing this type of pain. He asks me if I could be pregnant and I tell him no and he asks how I could be sure. I tell him I just started my period and he is concerned that it may be an ectopic pregnancy and asks me to take an at home pregnancy test. He also sends me for blood work and asks me to come in for a physical appointment later in the week. I get the test, take it and it is negative. I go and get my bloodwork done as well. During the appointment he palpates my stomach and pelvis on the right side, where he says he can feel something, but suspects it could be an ovarian cyst. He asks if my husband and I are sexually active and/or trying to get pregnant. I tell him that we are and that I am trying to get pregnant. He determines I need an ultrasound. He asks me if I feel sick at all besides the pain, weight loss, loss of appetite, anything and I say no, other than gaining a lot of weight and he asked how much I've gained and I couldn't be sure, but my stomach is extremely large and hard. So at the end of August, I go for the ultrasound. They do an external and an internal exam and I am on my way. A few hours later I get a call from my GP telling me they have found a mass on the right side. I broke down crying with a million questions running through my mind. Was it cancer? Was it a cyst? How long has it been growing in my guts? What's the plan now? He immediately sent me for a CT scan 2 days later and asked me to call his office when the test was complete. Again, a few hours later I got a call from him and he let me know that there were 2 large masses in my abdomen. The mass on the right side appeared to measure 24 cm x 6 cm in length and the one on the left measured approx. 15 cm x 4 cm. This is why I was feeling aches and pains throughout my sides and pelvis. Though he couldn't be sure, it appeared it could be ovarian cancer and he was sending a referral to a gynecologist.
My case was immediately referred to a gyne oncologist and in mid-September I met the oncologist. It was a surreal experience. I still didn't feel sick, I just had pains in my pelvis. I don't have cancer, right? The gyne onc's couldn't diagnose anything because they didn't know. The only way they could be sure what was going on inside my belly was with surgery. So at 34, newly married, I had a really tough decision to make: have surgery to remove both tumors, ovaries, tubes, uterus, etc and put myself in early menopause with never having children of my own, or allow them to take the larger tumor and one ovary, do pathology and see what it comes back as and possibly endure a second surgery removing everything any way. How do you make this choice when you thought your life would include children of your own? It was devastating. No one could help me make this choice and the oncologist wanted an answer for surgery in 1 week. My husband and I argued about the course of treatment because we both wanted children and I felt extremely selfish for wanting to live a long healthy life, and wanting to give up any chance of carrying my own children. We were referred to a fertility specialist who, although was very thorough was not optimistic that even removing the larger tumor there would be any viable ovary to harvest eggs from. So I still had no answers. I was lost in a sea of what if's. What if I have surgery and they take everything and it's not cancer? What if it is cancer? Tumors this large couldn't be a sign it was an early stage cancer...So I decided that I would ask the doctors to take the larger tumor and 1 ovary and try to preserve fertility UNLESS they got in there and it was much much worse than they thought it to be. I signed the consent for surgery and walked out still unsure of my decision. It felt like the best compromise of the choices, I could be okay with that...right?
I guess I should mention as well that I am an early childhood educator working in an early learning environment with children as young as 8 months old and as old as 5 years old. It was extremely difficult to go in to work every day with parents telling us they are expecting again and feigning excitement knowing that will probably never be me. My stomach was so distended it began to look like I was pregnant and I even had a parent ask when I was taking time off, because you know, the pregnancy...That was a difficult discussion to have and they walked away red with embarrassment when I said I had some "medical issues" that was causing my stomach to look like that.
I finally got the date for my surgery and it was November 4th, 2021. It felt like I was finally going to get some answers. Everyone that knew what was going on kept talking to me as if I was dying and looking at me like I wasn't coming back to work. I just wanted to scream "I'M NOT DYING!!!" at everyone but I knew that wouldn't help. After all, I very well might be dying, no one could tell me either way. Then I get a call: my oncologist had broken her hand and my surgery was pushed back. Thankfully, they were able to reschedule it for 4 days later.
So Monday November 8th, at 6:15 in the morning, I had to admit myself to the hospital. I was so scared because I didn't know what they were going to find and my husband couldn't be with me. My anxiety was at an all time high and when they took my blood pressure it was 141/100. I asked if I could at least have my phone with me so my husband could hear what the new oncologist and anesthesiologist's plan was. It the kindness of 1 nurse who was able to convince the doctor to let my husband come up and be with me while they discussed the plan. I don't remember much of the conversation, but having my husband with me definitely helped ease some anxiety. They were going to try and preserve fertility if they could. And then I don't remember getting wheeled to the OR but my husband says they asked if I could walk to the table and get on it and apparently I said yes. I woke up 3 hours later in recovery, groggy, disoriented and wondering what happened during surgery.
When I finally got on to the ward, my husband and my mom were both waiting for me and I don't remember much. My doctor came in to tell me again what happened during surgery (he told me after surgery, but I have no recollection of the conversation). I'm glad I had my mom and my husband both there because I recall very little from this conversation as well. He told me he was certain it was epithelial ovarian cancer and they actually removed 3 tumors from my belly: 1 the size of a large watermelon, 1 the size of a smaller watermelon (akin to the size of a cataloupe) and a smaller one from my omentum the size of a baseball. They also found some small tumors on my bladder and rectum and were able to scrape them away leaving both intact. My doctor was hopeful it was borderline epithelial cancer and I would only need surgery as a course of treatment and then monitored every 3 months for the next 5 years. He said it could possibly be low-grade epithelial cancer in which case I would need chemotherapy as well. In the hours after surgery I must have asked my husband to tell me 4 times what the doctor said. It was hard to comprehend then, and even today 1 week later: I have cancer. I still don't feel sick, not like you'd expect someone with cancer to be. I have energy, I want to go back to work, I want to be busy but I am waiting once again. I feel great, almost like myself once again, finding myself getting stronger every day.
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Comments
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@curiosityinspired
Welcome to our community and our thanks for sharing so much of your story, which I know is only a part of your life. Sometimes writing it all down can be cathartic, other times very difficult. I hope the extent to which you've shared has given you measure of peace.
As Moderator for this site I have read hundreds of stories over time and often feel I've numbed myself to some degree. But I have to admit yours brought out the Kleenex and the tears, something I haven't experienced in a long while. I only wish I could just embrace you in a hug and tell you everything will be alright in the end. But I can't. So the best I can give you myself is to welcome you here; to a community 900 strong across our country, each member with their own experience and story to share and desire to support you through this journey of ups and downs and twists and turns as you need us. You, I assume, have a strong personal network of family and friends supporting you. Think of us as an extension of that. A safe and non-judgemental place you can ask the questions you need to ask, to share the thoughts and feelings you may hold back with others. No matter what is going on ....you will never be alone.
Your shock at being diagnosed is shared by almost every one of us. OVC is a silent disease, sneaking up on us with it's vague symptoms that can be attributed to so many other ailments, and being largely not well understood most often the disease of last consideration to investigate rather than first. When I look back myself, I believe I was symptomatic over three years before the disease was diagnosed and then only as a result of investigation into a respiratory issue I had. As a result so many of us are not diagnosed until advanced stages. From the description of your GP's actions you were indeed fortunate to have one who moved forward as quickly as he did to investigate your complaints. It's not usual and we often to advocate for ourselves to get the attention need.
I am so glad to hear you are getting stronger. The anxiety you are feeling relative to next steps for you are natural and normal. It's one of the toughest pieces of our journey to handle...the waiting. Regardless of next steps I hope you have or will reach out for professional support. I am assuming your cancer centre has a social work department. Their staff can be enormously helpful maintaining perspective and balance and with local resources to support your needs, both physical and emotional. This is usually arranged through a referral from your cancer care team.
If you haven't already, please ensure you bookmark and use the OCC website as a resource. https://ovariancanada.org It is chalk full of information, resources, stories and programs that are extremely useful in guiding you along the path you're on. As newly diagnosed they offer a booklet you can order either hard copy or soft copy or both called By Your Side to guide you through diagnosis through the completion of primary treatment. https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources
Every Thursday at 1pm ET our group here participate in a live online chat that I host. It's a great opportunity for immediate feedback to questions or concerns but also a great opportunity to connect with others in our community, many of whom are new to the disease, many in treatment and many more long term survivors. We chat about everything under the sun....from the weather, to Covid, to the holiday season to our disease itself. It's a fun, informational and often distracting hour each week. To participate you need only sign in to OVdialogue as you normally would and then click on the discussion topic TEAL THURSDAY..... to enter the chat. That said, since all conversation becomes archived you can explore past chats any time. Love to see you there whenever it suits you.
Very importantly, OCC runs a monthly series of zoom chats called Teal Teas. One of the three each month is dedicated to young survivors like yourself who's needs and issues can be very different from those of us who were diagnosed at later years in our lives. I am cc'ing one of our team here, @jiselle16 with a request tor reach out to you directly. She is a young survivor like yourself, who's story somewhat mimics yours and has been instrumental in bringing this group together. With holidays approaching November will be the last Teal Teas of this season, the one for young survivors being held on November 24 @ 6PM ET. For more information and to register to participate go to: https://ovariancanada.org/Events/Find-Local-Events/2021/November/Teal-Tea-November-24-2021
Finally, what you many not be aware of is that OVC has been largely very ignored over the years. However, with thanks to the advocacy of OCC, and recent support from our federal government and some of the provinces, we have made great strides in research and the introduction of new treatments and drugs and programs so that now so many more of us are living long and productive lives. Where in past, in my personal network of survivors, the fact that I am recurrent would be the norm I am seeing me in the minority and so many of them now clear of disease long term. But even for someone like me, I'm beating the odds. My prognosis in early 2017 was 3 years. I am now in treatment for my third recurrence, which is going very well, and in my fifth year of treatment. My life may be different from what I had imagined it to be, but it's still a great life, as I know yours will be too.
Please stay in touch. Feel free to reach out to me in private message if there is anything I can do for you myself. Please continue to use our chat room to ask questions, research topics, and just talk about how you're feeling when the need arises. In the meantime, know you are in the thoughts of every one of our community.
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@curiosityinspired. Welcome to our group. Not a group you would chose to be in but a great emotional support when you find yourself here. I echo what fearless has said. This disease is like a huge roller coaster. Unexpected emotional highs with lows as well. In this group you will find that others have experienced what you might be going through and offer support, or just knowing that you are not along is a comfort. I am a 66 year old mother, grandmother and when I found out that I had ovarian cancer I was relieved that it was not my daughter or younger sisters, for that would have been unbearable. I am hoping that you can talk to the younger teal sisters in the group to get more support and join the thursday teal live talk sessions. These 66 years old shoulders are strong and welcome to help carry some of your burden. I also would love to give you a big huge hug. Teal sister gayle1
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@curiosityinspired Thank you for sharing your story. I too like @Fearless - Vol Mod had a few tears while reading your story. I wish I could give you a hug! Your story mimics so much of mine - I too was diagnosed in the process of starting a family, at age 31 and 9 months after getting married. I know the agony involved in making that decision for surgery, it's so tough. So very tough. The shock of diagnosis takes a while to sink in, it's something we've all experienced, so please know you aren't alone. We are here to help you through this! One day at time was my mantra.
There are some videos on Ovarian Cancer Canada's website profiling survivors describing their path to diagnosis and treatment. This might be something you may want to check out.
Feel free to send me a DM if you have any questions or are just looking for some peer support from a fellow young survivor. As was previously mentioned, I would really encourage you to attend one of the upcoming Teal Teas. This week at the Teal Tea we had 5 young survivors from all across the country with different types and stages of ovarian cancer, but there were so many commonalities amongst us. It was like chatting with old friends! While I'm so sad you are going through this, the sisterhood is here to support you.
Sending you a great big teal hug! 0 -
@jiselle16 and @Fearless - Vol Mod @gaylestorm Thank you all for your kind words. I feel so overwhelmed at times with this disease that I can't make heads or tails of what is happening. I have taken your advice and signed up for the upcoming Teal Tea in February (for young survivors). I'm part of a support group here at home for young adults with cancer and it is helpful to hear that others are feeling the same way. I'm hopeful that being able to talk with other young women who are dealing with ovarian cancer can better relate to what I am feeling.
Thank you all again
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