Just diagnosed and awaiting surgery

[CaseyD]

Hello, 

I am 33 years old, and I was recently diagnosed with ovarian cancer. I am awaiting surgery so they can tell me what stage my cancer is in, and from there we will proceed with treatment.

I have been mostly in a state of shock for the last 2 weeks. At first, I was in denial. I kept trying to convince myself that I was just catastrophizing. But when the doctor confirmed what I had been quietly dreading, it never really sank in. It still hasn't. I keep waiting for the moment where it hits me, and I just break down. 

I'll go through moments where I completely forget about it, and then the pain reminds me. The pain is a great reminder of what I'm afraid of feeling in the coming months. I have no idea what to expect, and all I can reference are movies or shows. Something tells me they arent being very accurate lol. 

I came here looking for people to connect with while going through this process, and maybe gain some insight from those who have walked in my shoes already. Anything will help at this point. 

[Eddymu]

I am so sorry you have had this diagnosis and at a young age. A year ago I was in your position awaiting surgery and staging/grading of endometrial cancer. It is a truly terrible and confusing time and if you have pain it must be so much worse. I’m glad you have connected with the cancer council they are fantastic and also with the online community. My advice is to try and focus on getting through each day and each step of the journey. I know it’s hard but try not to look too far ahead at what might happen. Focus on on the first step which is your surgery then go from there. Write down questions as they come to you so you have them ready at appointments. Don’t be afraid to post at any time. In this community we know what it is like. Sending you love and prayers. 🙏🏻💙

[Lolie]

Hi Casey

It's over a month since my cancer was diagnosed and I've begun treatment, but it still seems a bit surreal at times.  I expect that will continue to be the case.  I haven't had that "break down" moment, so I don't believe it's inevitable.

While there are many things which will remain unknown for a while, there is no reason whatsoever why your pain should not be well managed.  Make sure your team are on top of it and that you know who to contact if your current pain management plan isn't working.

One thing which has become apparent to me from reading about the experiences of others is just how differently people can experience the same disease and treatments.  It really is a very individual thing which is why anticipatory anxiety is futile. 

I have found talking to my team about my concerns to be very reassuring.  While they will give you a lot of  information upfront, that will be based on the questions patients usually have.  Make sure you ask them about anything else you want to know which they haven't volunteered.

There are a lot of resources available from the Cancer Council and other cancer-specific charities, so make sure you use them.

[Lampwork54]

Hi CaseyD,

I'm terribly sorry for your diagnosis.  It is a shock and I don't think anything can prepare you for that.  The people who have responded to your post have given great advice.  It is just one day at a time and getting through each day the best way you can.  

I wish you well and hope your journey is the best that it can be.  Let us know how you are doing as we will be checking in often, to see.  

[HGrey]

Hi Casey! I am three years older than you and I'm about a month into my OC diagnosis. You aren't alone! I had my first surgery in January, when a large, unknown tumor started bleeding and almost took my life. The first surgery has been a very long recovery, but you will have an advantage since yours is planned and you will not have to deal with blood loss and other complications. I can tell you that after the first weeks of even a large surgery, I feel so much better. And it feels great to know that it is out! Do you know if they will be doing a laparoscopic procedure or a laparotomy to remove yours? I believe this at least partially depends on the size of any masses that they have identified. The laparoscopic procedure is much easier healing time. It's not as scary as it seems at first, and I've not been in a lot of pain since the first removal. There is a lot of frustration early on I believe (I don't know if I am stage 2 3 or even 4 yet, or whether I will need chemo), but taking it one day at a time really helps.

[CaseyD]

Thank you so much. I'm trying to stay focused on the present, and am not letting this interfere with my plans. My sister and I literally just started up a business right before that happened, so I'm distracting myself with making bulk items so that we will have plenty of inventory while I'm recovering from surgery. So that's really helping. But I dont think I will be able to relax until after surgery.

[CaseyD]

Thank you, and you're right. I never ended up having that breakdown. I did go through a bit of a pissed off stage because it's so unfair, but that passed pretty quickly. All in all, I'm doing better than I thought I would be. As far as pain, they just prescribed me something stronger. I was being stubborn and only taking motrin, but it just wasnt helping anymore. As far as questions go, I just dont know what to ask. I think my head is just spinning with all the information that's been unloaded.

[CaseyD]

Your story sounds so similar to mine. I wound up in the hospital for a couple days due to severe pain and hemorrhaging. Luckily they were able to get both under control, but that's when they found the tumor that they said was the cause of my bleeding. I finally got in with my oncologist, and the surgery is scheduled for 2 weeks from now. They are going to do it laparoscopically unless they have to take samples from my abdominal lymph nodes. They said my intestines might be affected, so that scares me. Did they just remove the tumor, or did you have a complete hysterectomy? I have until friday to decide how I want to proceed, and I'm having a really hard time. There are so many options, and each one has their own risks. This is the hardest decision I've ever made.

[HGrey]

I found through forums and the scant bit of information from people our age that get OC (it's very rare!) that it is pretty common to find out by hemorrhaging. We may even be able to consider ourselves lucky since we potentially caught it early - OC is a notoriously silent killer.

The short story is that I did not have much say in the first surgery so they erred on the side of preserving  my fertility and I only lost one ovary. I did not know that I had cancer at that point. My bleeding was so bad that they had to remove the tumor immediately during emergency surgery in which I had to have several blood transfusions to survive. It started out as a laparoscopy but they had to switch to a laparotomy because my tumor was the size of a large melon. I also had one ovary removed at that time since the tumor had essentially swallowed it. The tumor was attached to my intestines, abdominal wall, and uterus so there are worries of spreading, which influenced my later decisions.

Part of what may influence your decision is whether you want to try to preserve your fertility. That is a sensitive issue, and one that is not often discussed because OC is primarily a post-menopausal disease. You also have to consider whether you want a radical hysterectomy which results in surgical menopause; there are side effects to this procedure. I decided in the end with my doctor that I wanted to take the most aggressive route: radical hysterectomy with no hormone replacement. But you can always have the tumors removed and then decide based on what they find. Because I had already had the first surgery and they saw how much the tumor was attached to I was able to make the decision pretty easily. Are you seeing a GYN Oncologist? Seeing a specialist in gynecological cancer is what I consider the most important part of my treatment plan - they will be able to provide the best information for you to choose.

Another thing that may help you decide is knowing what kind of cancer it is. There is a lot to find on the specific types of cancer and how likely they are to spread or reoccur. The grade (different from stage) is also important. 

I'm glad that I did a search on this forum today, our situations have a lot in common and as much I wish that neither of us had to go through this, it is nice to have a "sister in arms!" I talked to someone yesterday in a very similar situation to us (albeit 15 years ago) that was diagnosed at stage 4 and has not had a reoccurrence. Hopefully that can bring you hope as it did me.