New and freaking out

swimaddict

I started having irregular periods and flooding during the summer, particularly after an intense swim. I am 47 so I just figured it was peri menopause. Also, I had been feeling full when I wake up for the past month or so, but I chalked that up to my decades of gut disbiosis. Also, I was needing to pee more, but again I’ve had that for a really long time. And some back pain, but with lifelong sciatica, again nothing new. Other than that feeling fine. Went to get an ultrasound two days ago to make sure that the bleeding wasn’t from a uterine fibroid that I had been diagnosed with a decade ago. Well the ultrasound folks didn’t tell me that I had to drink a lot of water hours before the procedure and the tech didn’t think she’d even get any viable imaging as a result. I guess she did. The scan was at 3:30pm and the doc called me at 12:30 the next day saying that there is a tumor on my right ovary (explains the twinges of gas-like discomfort I was having during a good swim I guess). I am now waiting for an MRI and to be set up with a specialist (within the week). That timing makes me very worried. I’m supposed to do a 10k swim next week and now I’m not sure what to do. I’m feeling especially down because the past two three years have been hell with tragic deaths of my sisters children in an accident, and splitting up with my partner of 20 years. I just finished a masters and have switched my career. I have a new very supportive partner who lost his wife to a brain tumour about five years ago. Life was just getting back on track. The weirdest thing is that a friend made me a scarf for Christmas las year, teal. She said “these are going to be your teal years”. It just all seems way to coincidental. As with all new diagnoses, I’m trying not to jump to the worst case scenario, but it’s really hard not too. I am sure you all went through this too. And there is no way but through it… 

Tinazzie

Hello @swimaddict

Welcome to our community.  I’m glad you found us and hope that you will find that the emotions and anxiety you are experiencing are absolutely normal.  I think many, if not most of us, were gob-smacked blind sided by our diagnosis.  You will also find that you have an enormous amount of resilience and perhaps previously unknown strength to face and fight this disease.   

Things can get very overwhelming so try and prepare a list of questions and concerns that you have in advance of your upcoming appointment.   I wish you all the best with your MRI and next steps.  In the meantime, I hope you can still enjoy the holidays and know that you are not alone. 

Hugs!

Fearless

@swimaddict I'm so glad you found our community and thought to engage with us. And I'm so sorry you believe that post current testing there is a high likelihood of and OVC diagnosis.  But let's not get ahead of ourselves and instead talk hypothetically since there is a chance the tumour is not OVC. 

That said, your experience mirrors so many of us.  You can read story after story of gals in our community who ended up with advanced stage diagnoses because symptoms mirrored so many other conditions that investigation was not prioritized and even then precious time was lost in considering the possibility of OVC.  No turning back though. It is what it is and the important thing now is getting that MRI and proper diagnosis and if OVC a solid treatment plan. In the meantime I'm sure every awful thought you can have has crossed your mind. Some of us panic, others go numb, and others stay in total denial.  We all react differently but what is common are our fears.

If I can offer some suggestions to you right now.  Stay away from google and most Facebook groups on the subject.  They are often sources of outdated information and often promote thoughts that are not supported by viable sources.  In a nutshell, if you're freaking out now, they will just exacerbate your fears.  Do rely on the Ovarian Cancer Canada website where the information contained is supported with scientific evidence and reliable sources.  There you will find  a wealth of information from survivor stories, to videos on various topics of interest, to updates on new research and new treatments, drugs and clinical trials.  If you haven't already I urge you to order the booklet By Your Side that is an exceptional tool to inform and guide you through diagnosis to end of treatment.  Most of us have both hard and soft copies and use it as our 'bible' to help answer questions and, more importantly, assist in preparing for consultations with your cancer care team.  You can order the booklet at https://ovariancanada.org/Living-with-Ovarian-Cancer/Find-Local-Support-Groups/resource-guide-request-form

Every Thursday at 1pmET we hold a real-time online chat that you may want to join regularly or just as needs arise. You don't need to register.  Just sign in to OVdialogue and click on the discussion topic Teal Thursdays to enter the chat. And coming back in 2022 will be OCC's Teal Teas, a once a month online gathering using the zoom platform. They require registration to obtain the zoom link. I will be posting the new schedule and links on OVdialogue when announced.  Another feature that might be helpful is the search bar at the top right of your OVd home page.  Type in key words on any topic of interest and you can source previous discussions on the subject.  

I know this is an especially difficult time of year to be worrying about an OVC diagnosis and what that might mean for you, especially coming off so many recent tragedies and finally getting your life back in order and in a good perspective.  What I can tell you is that if the diagnosis is confirmed there are so many of us now who are cancer free following the end of primary care. And for those like me who have recurrent OVC that will never be cured there are more and more new drugs and treatments that are allowing us to live longer and better lives with this disease. When I was first diagnosed in 2017 with high grade serous stage 3C OVC the average life span was 3 years.  Not many who's primary treatment was not fully successful lived longer than that. But here I am, by the grace of a great care and clinical trials and new approaches to managing my situation five years later, still going strong, and expecting to be around for many more years.  Stay strong. Take each day as it comes. Rely on your cancer care team for guidance.  

And please keep us posted on how you're doing and reach out any time we can be of help...even if only a safe place to vent when needed.  You're never alone in this community.

Please try to eke out some joy over the holidays.  I wish you a season of some joy and comfort and for 2022, a year ahead of healing and great possibilities.  

Big virtual hugs for now, 
Fearless aka Kathi