What do I need to know about my type of cancer (ovarian)?

i think personally the first things i'd be asking are: where are the remaining tumors that they felt couldn't be operated on? why couldn't they and would they be able to at the larger center? Do i carry the BRCA gene (if so that could lead to more options in treatment)? What other options are there besides more chemo? Where did this cancer originate, was it my ovaries or someplace else and they are just calling it ovarian (some of the docs in the network around me actually have done this)
i personally drive 4+ hours to UVA because they have such a good cancer center...had i relied on my nearby docs i'd prob be dead now instead of how well i'm doing...in fact when they found it the first thing they said was "Do you want comfort care or do you want to try to fight this" so YES ask questions...get hard copies of your medical records from current docs., copies of all scans you've had etc and take them in with you...just in case.... Good luck!!!

Was your surgery done by a gynecological oncologist?
Do you have access to your original tissue sampling/biopsy results, to know what type of OC you have?
Did you have germline and somatic testing for BRCA-1, BRCA-2, and HRD status?
Do you know if your cancer is platinum-resistant?
Did your CA-125 go down with treatment?
Did you receive bevacizumab (Avastin) in your primary therapy?
The answers to these questions will help determine what your next steps should be. Try to gather this information and bring it to your appointment for your second opinion. (You may have to make an appointment with your original doctor to get the answers to these questions.)
Good luck!

When I read other women’s comments, I realize how very little I was told. And I didn’t know to ask and hadn’t learned to ask in anything I’d read either.

We only have 2 oncologists up here. I had one of them through my first 3 chemos. For specific reasons, I felt that she was awful from the get-go. That first impression only got reaffirmed over time. The cancer surgeon who did my surgery helped arrange for me to get switched to the other one to continue chemo and treatment after surgery. At first, I thought he was better but I’ve discovered that he’s pretty terrible as well.

I received Avastin during chemo and after. My CA125 went down from over 1700 to around 20 after surgery and 6 chemo sessions. It stayed there for a number of months. Using that low CA125, my current oncologist started telling me that I was cancer free. He also went farthe and told me that he thought I was going to be one of the lucky ones where it never came back. I told all my family and friends that. About a year from my first PET scan and cancer diagnosis, he wanted to stop treatment completely. He announced that I was cured. I said that I would like a repeat PET scan before he stopped treatment. He disagreed with me about needing a repeat PET scan. I had my 6 month checkup with my oncology surgeon, who I’ve really liked, so I just waited and asked him to order one. The PET scan showed that I had never been cancer free at all. Chemo hadn’t been completely successful. The cancer surgeon said that for me the CA125 isn’t an accurate measure. For me, finding out that I wasn’t cancer free was actually worse than the first diagnosis of cancer.

I’m still with this oncologist who would have mistakenly stopped treatment completely. Who knows when I would have found out that he’d made a major mistake? I’ve learned that I can’t trust the doctor who’s treating me for Stage 4 cancer. And in hearing all the information that other women know about their cancer type, I’m discovering that it’s when worse. That I was also never given any of the information about my cancer type that other women have received.

I will get all my records and finally work to learn what I didn’t know I needed to know. Thank you all so much for the information and help. Jo-

@jo42 I'm happy to know that our Gynecological Cancers Support Group has been - and will continue to be - very helpful for you. Your experience is the reason why I chose to continue my cancer surveillance appointments at Mayo Clinic where I had my hysterectomy. We drive 425 miles (7.5 hours of driving time one way) for my follow-up cancer care. Since there are some specialities that we do not have in my rural area of Michigan I also see an endocrinologist (for osteoporosis) at Mayo Clinic. When I had a recurrence that was spotted in physical exam (pelvic exam) by my nurse practitioner at Mayo Clinic I had 6 weeks of radiation therapy at Mayo Clinic. I chose to live in Rochester for that period of time. Yes, I could have arranged for radiation therapy locally but the expertise at Mayo Clinic and patient care far outweighs our local system.

What's next for you, Jo? You are getting good recommendations here for what to ask. Are you planning to talk with your primary care provider about a referral to a larger comprehensive cancer care center for your cancer surveillance appointments?

Jo, I’m so sorry you went through that. You’d think an oncologist would know better than to say “You’re cured!” to ANY cancer patient! Ever! My mother-in-law had melanoma in her 50s. It came back thirty years later and killed her. The best cancer patients can hope for is “No evidence of disease” (NED). If you are NED for 5 years, then you are considered to be “in remission.”
God, I hope you find a decent oncologist. Keeping my fingers crossed for you.

Yes. And I did that already. My closest is about 60 miles away in Sacramento at the UC Davis Medical Center. They have a cancer center and I have an appointment there next month. I hope I feel better about them. 🙏🏽

My husband and I adopted two children with physical disabilities. We started off taking them to UC Davis but got very disillusioned and concerned about the quality of their doctors, etc. We changed to Stanford University Children’s Hospital and drove 4 hours for their specialty care, surgeries, etc. So deciding to go to UC Davis wasn’t easy. But I have limited $ and also PTSD from a car accident caused by my cancer treatment. Driving into the crazy San Francisco Bay Area scares the bejesus out of me now. So I’m crossing my fingers that this is significantly better from what I’ve gotten so far.

I’m originally from Northern Minnesota and my sisters and I are coming back for a reunion in July. I wish I could get seen at the Mayo Clinic but I can’t figure out how. ☹️

@jo72. Going to UC Davis sounds like a very good plan. You do have some good resources not all that far away from you. I’m from the Bay Area and whenever I go home I’m OK in traffic for about 1 or 2 days. After that it’s all I can do to figure out the usual times when I can avoid traffic. Which is almost never! I feel like I spend more time in my car than with friends and family.

How wonderful that you will have a family reunion in Northern Minnesota this summer.

Have you scheduled appointments yet at UC Davis?

Yep. I’m all set for June 24th.

My son was born up by Santa Rosa and rushed to UCSF Medical Center when he was born. We used to live in Boulder Creek and when we adopted him, we continued to take him to UCSF. We loved his specialists there. A friend here was just diagnosed with breast cancer and she’s decided to go all the way there for her cancer treatment and surgery. If I feel unhappy with UC Davis, I may do that too. My son, Cory, got excellent care there.

But I lived in the Santa Cruz mountains during the 1989 Loma Prieta quake. I became an earthquake believer that day. So now, whenever I go to the San Francisco area, I go “Earthquake, don’t happen today!” 🙏🏽🤞🏽🙏🏽🤞🏽🙏🏽🤞🏽

@jo72 June 24. That’s great. I have friends who both received cancer treatment at UC San Francisco and were pleased.

I was no longer in California during the Loma Prieta Quake in 1989. I watched in on TV, though, in Candlestick Park. And then saw the effects in the East Bay when I came back home for a visit. So, yeh. I understand your prayers.

I hope you will let me know how your visit on June 24 goes.

Yes. I did that already and I have an appointment for my nearest large cancer center towards the end of this month. The Avastin that’s been keeping my tumors at bay could quit working any time. I hope that I will have access to much better medical care by then.

From getting help and support from so many wonderful women here, I’m thinking that if UC Davis’s medical providers concern me, I may have to reach out farther into the San Francisco Bay Area for better medical care. Due to very limited funds and having PTSD triggered when I drive into more crowded conditions, that may be tougher.

I have a friend who had bladder cancer that was treated at UC Davis. She said that the immunotherapy drug that was used successfully with her has now been approved to treat ovarian cancer. I’m crossing my fingers, toes, and nose hairs that might offer some more hope than I’ve been given by my current cancer physicians.