English Community

Hi everyone,

My name is Becca and I was diagnosed with very rare Sertoli-Leydig ovarian cancer back in 2015 when I was only 20 years old, luckily caught at Stage I and was resolved with surgery, but I haven't felt quite right since then. Just last week I got results of a genetic test and it was confirmed that I have a rare pathogenic Dicer 1 mutation that predisposes me tumor growth in general, as well as a predisposition to cancer in multiple organs. It is what caused my specific type of ovarian cancer. I have been in therapy since before this diagnosis, but the genetic diagnosis kind of made me feel lonelier than I ever have before. My remaining ovary could succumb to my broken genes, and I am only 31. I am just looking for support from others that get what it is like to have the weight of what if, understand the scanxiety, and I would love to hear how you have managed to make it through your hard times, because I am struggling to make it through mine.

Thanks so much, with all my love.

Hi Becca,

I haven't walked in your shoes exactly, but I have stage 3C inoperable high grade serous ovarian cancer, spread over other organs in that area.   After the shock and fear came a fierce will to fight for my life.  I dove into natural remedies to be a big part of my chemo treatment protocol. A new healthier diet, more exercise, no alcohol, meditation, researched supplements and other researched natural treatments would put my body in a better fighting position.  I was given a year to live.  It's been 4.5 years due to a great response to Taxol and Avastin and due to how proactively I'm treating my broken body.  Genes don't have to be our destiny.  There is so much you CAN do to help your body fight this. Investigate anti-cancer diets.  Check out Jane McLelland's book and Chris Wark's website.  You will find hope there and lots of good advice. Cross-reference any supplement suggested against your other drugs and chemo etc.  There is a lot of this information online.  Personally, I don't ask my oncologist anymore because he doesn't know much about supplements or natural treatments.  He admits this.  I ask my naturopath instead.  Her own dad passed from cancer and she has kept up to date on all the new studies for natural remedies (to add to chemo or immunotherapy) I use PubMed to check for up to date research.  Put your cancer type in the search bar there and see what comes up.  If you plan to have children, can they harvest and store your eggs?  Keep fighting and know you are not alone.  I'm glad you found this forum.  XX

Thank you so much for your response, that is very helpful! I am starting to learn about meditation and mindfulness and I love the idea of the natural approach, because I am on so many medications right now and I have always worried that it is more of a bandaid than a solution!

I am so happy that you are still here after that incredibly scary diagnosis, you are truly an inspiration! Unfortunately the genetic disorder I have had a 50% chance of being passed down, and I think that is too much to risk, I wouldn't want my child to have to deal with the things I've dealt with, but the worry is that I might have to consider removing my remaining ovary as a preventative measure due to the rarity of it all... It is just a lot to take in, and I have been getting stuck in unhelpful thought loops of all the things that could happen.

I am an artist so I try my best to remain creative to keep my mind occupied.

Hi @beccavrieze and welcome to the forum. Thank you for sharing your story. Every cancer diagnosis is a punch in the gut. That you have successfully fought this cancer for so many years gives other hope although I understand that it doesn't feel that way for you at this moment. When I was diagnosed with High Grade Serous OC, stage 3C in Feb 2024 I had no knowledge of this type of cancer, let alone that I was BRCA-2 positive. I didn't even know what that was. I'm treated at Princess Margaret Hospital and was given the option of genetic testing. I discovered the genetic mutation had been passed via my father. With my mutation came a higher predisposition to other cancers particularly breast cancer. I too also had a 50% chance of passing this mutation on to my son, who has a 3 year old daughter. My son opted for genetic testing and found that he had NOT inherited the BRCA-2 gene. I cried so hard when I found out. It is indeed a stress on your mental and physical being when you learn about your genetics.

I'm not sure if they gave any perspective on the "statistics" regarding your predispositions to other cancers. We tend to avoid living in the world of statistics on this site. Why? Because we are more than statistics. At times however, they can also be helpful. As an example, when I read the weather app and it says there is a 40% chance of rain, I always remind myself that there is a 60% chance that it won't. So, I try to lean into the positive side of the stats. It's just a perspective.

Do you have a support system around you? A supportive medical team? I will admit I take a lot of strength from the Teal Warriors in this forum. I always learn so much and it is a safe space to engage with individuals who 'get it'. I also have a therapist assigned via PMH who has been very helpful when I start to delve too far into my 'dark thoughts'.

Within this OVd site there is a Library section with a wealth of information in Video or PDF format. As well, there are monthly "Teal Tea's" where OVC women come together via Zoom to connect, share and support each other. There is one for 'younger' people diagnosed with OVC/endometrial cancer. You can find the sign up in the EVENTS tab above OR on the OVd main page (right side). Here you will find individuals who you may be able to relate to especially considering your age. 

Each of our journey's are different however, we are now connected with a common foe. Our collective goal via this site is to ensure you feel supported. Please keep asking questions. We will do our best to help and wrap our arms around you as best we can from a distance.💙

#Introductions #Supportandencouragement

@Alwayslearning Thank you so much! I really love that perspective, I am learning how to actively change my perspective in therapy, it is difficult to alter as the thoughts are happening but I am putting in the work!

I definitely didn't recieve the proper emotional support in 2015, oddly enough I wasn't given any resources at that time for any sort of support, so I think the genetic results have brought me back to how I felt when I was 20 because I didn't fully overcome it emotionally. I am SO happy that I found this group, and I have signed up for the Teal Tea on the 24th and am looking forward to connecting.

I am just at the beginning of learning my risk statistically and have a formal appointment with the geneticist on July 2nd to hopefully understand it more, I know I am waiting for at least 5 referrals to different specialists so it is just a lot to process and wait for. Waiting for results is always anxiety inducing, which I am sure every single wonderful person here can understand. I have a great support systems with friends and family, but as great as they are I think I needed people who have been in a similar situation and can relate to all the feelings associated with it.

Thank you so much for the warm welcome, I am happy to be here!

@beccavrieze I'm so glad you have signed up for the Teal Tea. It is another form of connection to people who 'get it'. I'm also glad you have therapy support now and a strong support system around you. 

As you wait for your referrals to get actualized may I make a suggestion? If you aren't already, write down everything you are feeling (whether emotionally or physically) and all the questions that pop into your head. You may even find that you repeat yourself in what you scribe however, that will then emphasize to you what the most important items are for you for clarity. I keep a journal where I record all my questions for my upcoming appointments. The appointments could be three months away and I find it's important to capture what I'm thinking when I'm thinking it. Of course I'm twice your age so it's could just be an 'older brain' thing 😃.  A few days before an appointment I go back over what I've captured and organize it in preparation for that appointment. I make sure I'm focused on the information for that specific doctor e.g., what I may need from my GP is different from what I may need from my oncologist. We often find we don't get the amount of time we would like with a specialist so being organized in advance can help ensure you maximize the time you have.

I appreciate as well all the sage advise from our other Teal Sisters such as @LeslieA @Meinvan and @HorseGirl 💙

Keep asking those questions!

#Supportandencouragement

Hello Becca,

   I am glad you found us. This is a safe place to ask questions, get support, and learn from each other. There is so much collective wisdom here! I was diagnosed in November 2024 with high grade serous carcinoma, stage 3C. I knew absolutely nothing about ovarian cancer and it took months for me to process that this was actually happening and I was in a fight for my life. At this time of writing, I have been NED (no evidence of disease) since last August, and I have enjoyed many months of feeling well again. I agree with others that stats are rough estimations, but not overly helpful given the individuality of our bodies and how they respond. We are far more than those numbers. 

   As BellaDonna suggested, there are things we can do to stay as well as possible. All kinds of things for the body, mind and spirit. I noticed that you are an artist. I use art as a therapeutic avenue as do several other teal sisters. I found that art expressed my feelings far more powerfully than other means. I hope that you find creative/meditative avenues that give you some respite during this stressful time. 

@beccavrieze, hello and welcome to this group.  Glad to hear you have an appt with a geneticist, I'm hopeful they will be able to tell you a lot, and all the other specialists you are seeing soon.  I believe knowledge is power.   It's scary to know that we have this gene and that gene, but it also allows us to closely monitor for things and hopefully catch them in early stages.  From my screening I found out I have NF1 mutation, and when I read about it I found out it predisposed me to certain cancers such as breast, ovarian and colon and my life expectancy for this mutation is 15 years shorter than average.  A scary thought in my mind.  All my siblings have had a different type of cancer, breast, colon and now ovarian.  1 thriver, 1 fighter, 1 butterfly.  I don't know if they have the same mutation but I think it's important for us to know and talk about it.  Recently, talking with my niece she said she was thinking about getting genetic testing, but her brother didn't want to know.  I said it again to her, knowledge is power, the more we know the more prepared we will be for what the future holds.  Anyways, I'm babbling on,  but welcome here.  We are here for you.🩵🫂

Hi Becca, and welcome to OV Dialogue. You have come to the right place for support.  When I was first diagnosed with OV cancer in 2023, I was very upset and worried, and took comfort in communicating with many people in this group, especially@Strongwoman who has now passed.  May I offer some advice?  You have TODAY, and worrying about negative consequences is stealing your joy.  Yes, your concerns are legitimate.  But as long as you have two feet and a heartbeat, you owe it to yourself to ENJOY your life.  Try not to let that noise in your head about cancer ruin your NOW.  
My younger brother just died from oral cancer last Thursday, four days after his 60th birthday. When I was diagnosed with OV cancer in 2023, never did I imagine that he would be gone before me.
Life is short, and death is certain for everyone.  It is scary to contemplate our mortality.  Seize your moments and LIVE with purpose. Sending love and support your way.

@HorseGirl a wise perspective indeed. Also, I too miss @Strongwoman who was one of my initial connections on OVd 😔

I'm very sorry to hear of your brother's passing. My condolences to you and your family. A tragic loss no doubt and at such a young age.

You are correct that life is indeed short. We never know what may befall us on any given day. I always say that while death is inevitable, it is never expected. It's strange as we know we are mortal. Living for the 'now' is indeed good advice.

#Supportandencouragement

I have been on that combo for 4 of my 4 1/2 years with cancer.  But right now I am only on Taxol, since January.  In January I had a complete bowel obstruction and another in May.  So my oncologist took the Avastin out and will withhold it for another 4 1/2 months or until he feels my intestines have fully recovered. Avastin can cause side-effects like hot flushes, sleep disorders, constipation OR the runs.  Leg pain in thighs (daily Claratin non-drowsy 24 hour formula helped a great deal).  The worst side-effect (rare) is bowel perforations so I have to stay off it until the intestines are completely healed.  So far my scans are stable and my CA 125 is in the 80's but it spikes whenever I get an infection or body trauma.  During the obstructions it climbed to the 140 to 160 range but my scans showed no new cancer.  It's all over my organs in my abdomen but so far so good. :)

@BellaDonna1959 thank you for sharing. I'm always amazed at how long our bodies can tolerate treatments. Glad that your scans remain stable and the CA125 is in a lower range for you. The gold standard CT not showing any new cancer is also a blessing. Sending you lots of positive thoughts and energy!! 🤗

#Treatmentandsideeffects #Supportandencouragement