Récurrence and scared

[Blue_Lady]

Hello everyone, I was informed last week that my cancer has returned. I was diagnosed in June of 2019 with OC stage 3C, was operated for TH and BSO had 2 trials of chemo which brought my CA125 down to 45. I was placed on harp inhibitor, Zejula as maintenance but unfortunately after only 5 months my CA125 had shot back up to 397.

I’m waiting for my oncologist to let me know what the treatment plan will be. In the meantime, I have been doing my research on different treatment plans and trials. I would like to know if anyone has approached their current doctor about getting a second opinion and how did they respond. Did they facilitate in sending the necessary medical documents to obtain treatment options.

Thanks for your suggestions ´

[Ruebacelle]

hi. stay calm. this is a recurring but manageable disease at least for a while. Here in France it is the law that you are entitled to a second opinion but i think in any case it is a good idea especially if your gut instinct tells you to do it. I did it finally and was put in touch with a world famous rare disease oncologist in Lyon who has been in charge of my treatment since. I have confidence in her and that is the most important thing. Some times a specific line will not work so we move on to the next My lirst and second lines (carbotaxol then carboavastin) worked and i was in remission for a year. the next 2 (carbogem then caelyx) did not work and the cancer was back and spreading. on my 5th line, in the 6th year, taxol weekly, and it is working well. There are women who have posted getting great results with carbogem so you never know. each person is different, reacts differently, so stay calm, find people you trust, do the research, pay close attention to diet and what is recommended and what isnt, and make it a game, a challenge. I have a large pillow on which is embroidered: Stay calm and drink champagne. That is on the off week when not on chemo. Hugs from France.

[WildflowerTheWarrior]

I’m so sorry it has recurred and that you are scared. We all would be as it’s our biggest fear. But do try to stay calm as Ruebacelle has said. It’s manageable. You are entitled to a second opinion. Your doctor has most likely had other patients want a second opinion. Your doctor will comply. I’m sure of it. It’s your life and your cancer. You need to do what’s in your best interest. Stay strong. Keep the faith. We’re all behind you in one or another. Keep us posted.

[Neona]

I went for a second opinion. I didn’t ask my oncologist but wrote and informed him of what I was doing. I asked my GP to do the referral.

[delia2]

Hi. If you’re in the US which I’m guessing because you said Zejula rather than Niraparib you shouldn’t have a problem getting a second opinion. I’ve had four over time. You should contact the closest major cancer center. Their website will walk you through it. With Covid you can probably do a phone consult. Your doctor has to send a sample of your tumor and you can request the scans etc. I go to Dana Farber now after getting a second opinion there early on. I also went to MD Anderson and found it impressive but overwhelming. At this point you might be looking for a a trial.

[GwenHP]

I would definitely seek a second opinion. Most gyn/onc are very receptive. And if they’re not, that might be an indication that you should consider changing doctors anyway. One of the things I’ve done from the beginning is to ask for copies of test result, surgical reports and pathology reports whenever I have something done. That way I’m not dependent upon someone in a busy practice to forward my medical records. I can do it myself. I’ve pretty much trained them now to bring a copy in when they come to discuss any results with me.

Couple of questions: who did your surgery? Was it a gynecologic oncologist? What chemos were you given? Carboplatin and taxol?

I was surprised to see that they they stopped chemo after 2 cycled when your ca125 was 45. Did they have a reason to believe your normal ca125 was above the standard?

As others have said, please stay calm...and yes I fully understand that is so much easier said than done. You have us to vent and cry when the uncertainty gets to you or shout joy from a rooftop when you get good news.

Stay safe and best wishes - Gwen