Hi. I haven’t been officially diagnosed yet. I am having surgery in a couple weeks to remove a large mass that they believe is from my left ovary and on top of my uterus. (The mass prevented them from seeing that ovary on the ultrasound. ) I know it is growing because the pressure and pain is increasing every few days. I am 55 and have been postmenopausal for 5 years. Elevated ca 125 that has increased since first blood test 6 weeks ago, As I said, I don’t have an official diagnosis so maybe I shouldn’t be posting here yet, however the gynocologist and surgeon both said it is unlikely that it is benign. Of course, I keep googling to see what the chances are that it is benign. The waiting is difficult…can’t keep busy enough. I am nervous about the surgery…I am a wimp when it comes to pain!
Welcome to OVdialogue @Brenda. I'm glad you found us and happy that you chose to engage now rather than later. The information you'll find here will help you plan for the journey ahead if your diagnosis is OVC.
I can only remember all of the emotions I went through before my surgery and final diagnosis. Although for me, my oncologist was pretty clear it would be OVC. The waiting for final confirmation and for the important details around type and stage was rough. And for someone who'd never gone through surgery before, the prospect was daunting. Like you I worried a lot about pain post surgery. I knew it could be managed in the hospital but what about when I went home. And, of course, the more I googled the disease, which I knew nothing about, the more terrified I became.
So from a survivor to someone waiting, here are some thoughts to share with you.
I was diagnosed High Grade Serous OVC stage 3C. The type I have is the most common and also the most aggressive and 3C is considered advanced stage, which most of are at diagnosis due to the vagueness of symptoms and time involved to get to a diagnosis. That said, while all the statistics indicate I shouldn't be here now, I am in my 5th year living with the disease, having just finished treatment for my 2nd recurrence, and a continuing strong prognosis for even longer term survival. That's me. Of my local group who share a similar diagnosis, only one other shares recurrence. 4 others are going into their 5th years free of cancer following their primary treatment. We all respond differently to treatment.
As for pain post surgery, like most my surgery was extensive. I was given two options to manage pain. Self administered morphine following surgery or an epidural block that would be inserted during surgery and left for a few days. I opted for the block and never once felt any pain or discomfort. By the time I was released home I had need of nothing more than a couple of occasional Tylenol. Was I just lucky? Perhaps. But I do believe in ensuring good communication between you and your medical team and not playing the martyr. The more they know how you feel and your fears the better they are equipped to help you manage through any discomfort, in fact totally avoiding much of the time.
Of course the outcome of your surgery will inform your final diagnosis and treatment plan moving forward. Just remember, whatever the case, you are not alone. OVdialogue is a community of close to 900 survivors....some long term, some still fighting, some in first stages of treatment and some, like you, waiting for diagnosis. We've all walked in your shoes at some point and are here to answer your questions, share our experiences, and when you need it, just be a shoulder to lean on.
The Ovarian Cancer Canada website is a phenomenal resource of information on this disease, all of of which is vetted for accuracy. There you will find videos on a multitude of topics, information on current development in research and treatment, and resources available and upcoming to support you. I suggest you familiarize yourself with it if you haven't already. https://ovariancanada.org
Order the booklet By Your Side from OCC. It is a very useful guide to help you through your current stage and all the way through primary treatment. I keep it and it's successor for those with recurrence, Still By Your Side, as a reference tool on my desk at home. They come in both hard and soft copy and I have both. And not only are the booklets informative, they are also helpful in framing the questions you should be asking as you meet with your treatment team. https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources
Finally, if I can offer any initial comfort to you, it's that treatment of this disease has made significant progress over the past few years. As I said to a friend recently, if I had to get this disease I'm glad it's now and not earlier. For myself, my primary treatment was as successful as it could be for someone with a predisposition for recurrence. At that point, thanks to strides in treatment, I was admitted to a clinical trial that managed my cancer for close to two years, the trial only expecting a 6 month window of success, and then my current treatment for the most recent recurrence has again been enormously successful. Those in my situation often suggest that our disease is becoming likened to others like diabetes....where with treatment one can co-exist and live a long and good life.
I hope this helps somewhat. Please do let us know the outcome of your surgery and if an OVC diagnosis, how we can help. And feel free to continue to ask questions or use this group as a sounding board in the interim. We are all here for you.
Best wishes in the interim
Thank you for your reply. I so appreciate it. I ordered the guide you mentioned and it is a terrific resource. You've made me feel better about the surgery too!
My current mindset is to stay positive and, as you note, there have been great advances in treatment.
It feels like a dream to me though because I feel quite well (other than being more tired than usual and having very sllight abdominal pain). I just don't feel sick. That's what makes it strange.
Thanks. I've always been a believer that the more educated one is on this disease the more control one has over their future. I know the waiting can be stressful in itself. If you have more questions or just feel the need to share how you're feeling please feel free to join our weekly live online chat which I host on Thursdays at 1pm EST. You need only sign in, click on the Discussion topic "Teal Thursdays..." to join in the conversation. Love to have you with us.
In the meantime, our thoughts and best wishes are with you.....
@Annie1950 Thank you! Just at the beginning of this journey and I have really appreciated the support I've received here.0
Hi @Brenda - glad you found OV Dialogue! The site will be an invaluable resource for information and support. As fearless said, we have all walked in your shoes. My doctor didn't think I had ovarian cancer but the pathology indicated Stage 1 Clear Cell. There was a breach in the tumour and the concern was some of the cancerous cells spilled into my abdomen. I was treated with six rounds of chemo and five years later there is no evidence of disease.We all have a different story, diagnosis and treatment can vary from patient to patient. Don't be afraid to ask questions because more than likely someone here will have an experience to share with you.My pain level after surgery was treated with Motrin and Tylenol and I found it to be sufficient. Here again, everyone's tolerance is different. Be sure and discuss with your doctor beforehand as fearless suggested.Stay strong! You got this, girl!1