Advice for just starting my Ovarian Cancer journey

Good morning, Texas Mom,

I'm sorry to hear you have this diagnosis. But you're being proactive, which is great. You need to be your own advocate throughout this.

I remember one of the first things I read when I had a similar diagnosis, probably ovarian cancer but not confirmed. It said you want a very experienced gynecologic oncologist to do your surgery. I don't know how much experience the doctor has who you've been referred to, but I would proceed with caution. Ask him or her how long they have been doing this and how many surgeries they have performed. The first doctor I interviewed had only done about 50, which didn't sound like enough experience to me. If it was me, I'd opt for MD Anderson, if possible, because the surgeons there should be very experienced with this procedure. Alternatively, you could look for a good research hospital to do the surgery. If you are paying out of pocket, it might be cheaper that way, since surgeons at research hospitals don't get paid as much. I traveled to UC-Irvine for my surgery. I saw one of the top 10 gyn/oncs at the time.

When I went through this, they never did a biopsy. Regardless of your final diagnosis, they need to remove what they are seeing in the scan. So, they just go in and if it's cancer, which they determine during the surgery, they proceed with the debulking procedure. During the initial look, if they feel they won't be able to perform an optimal debulking where they can remove all the visible cancer 1 cm or larger, they will opt to do chemo first, to reduce the tumor load, and then go in later to do the debulking. An optimal debulking is essential, as it improves your outcome.

I am a huge advocate for taking an integrative approach, meaning a combination of conventional treatment and alternatives. I feel this is easier to do if you consult with an oncology naturopath. Ovarian cancer is a complicated disease and it's good to have the guidance of someone who has a background in combining treatments. Your conventional oncologist won't know anything about alternatives of how to use them. I took a combined approach and although my surgery was suboptimal, and my doctor said the tumors would not respond to the chemo, I've been NED since 2010.

Good luck. I hope this helps.

Texas girl--Oh, dear girl. I feel for you. This is a shocking thing for you and your family to have to grapple with. I'm a bit further along in the journey, having just finished 4 rounds of chemo, aggressive debunking surgery, and awaiting more chemo. What do I know now, that I wish I knew before? Well, I was so disappointed when he did an exploratory laparoscopy, and told me I needed chemo first. I thought that was a bad sign. Not so... four rounds of chemo was VERY effective at reducing the tumors (I had mets to the diaphragm, bladder, sigmoid colon... it was everywhere). The surgery that following was deemed very successful. Also - I was terrified of chemo - but didn't need to be. I was scared of nausea and vomiting - there was none. I did have a fair amount of pain following chemo, but meds absolutely helped, and I didn't hesitate to take them. I am now one month post surgery, and everyone is telling me I'm doing fantastic, so I have to believe that. I went into this in pretty good physical shape, so that's helping. MDAnderson is as good as it gets, but hoo boy - I believe you might be underestimating the costs. I went to Sloan Kettering in NYC, and haven't seen all the bills yet... but they're up there. You're doing all the right things, reaching out, getting information and seeking excellent care. Good luck --you're gonna get on the other side of this - YOU WILL!

Mr and Mrs Texas Mom--tomorrow you go for the first chemo. I'm sending lots of positive thoughts to you, from up here in PA. You'll be OK - you'll be fine! The first one is scary, but you'll get through it. This is the first step in your chemo journey. If you get the same chemo as I did, the treatment is in two parts: The first, Paclitaxel in some way interferes with cancer cell division. GREAT! The second, Carboplatin actually kills the cancer cells. EVEN BETTER! So, it's a one-two punch.  This combination works, and you'll start to see your CA 125 numbers drop. Best of luck to you--chin up, you've got this! Ruth

Mr &Mrs Texas. Good morning! I hope things are going well with your chemo treatments. I have a suggestion or two. Are you getting an injection the day after chemo for nausea? Did they tell you about taking Claritin several days before the injection and 2-3 days after? For discomfort/pain associated with chemo treatments, warm showers or tub ash’s helped me even if only for 2-3 minutes regardless of the time of day or night. I wish I had been told about the gloves and socks with coldness, as I have constant tingling in hands and feet.😁

Have your wife continue with her bowel regimen throughout time in between treatments. Once the bowels are moving they only stop up again with the next treatment. Good luck. Praying for you both