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Uncertainty with diagnosis/treatment plan
Hi there, I have read posts in this group off and on for informational purposes but have never really posted before. We are going through something with my mom right now and I just wanted to share and see if anyone has any thoughts on this situation. Sorry in advance for the long post.
Background: my mom was diagnosed at age 70 with stage IIIc high grade serous ovarian cancer in September 2017. After four initial chemos (carboplatin/paclitaxel), she underwent surgery in December 2017 (removal of ovaries, uterus, omentum) which was very successful. It was followed by three more chemos. She was declared cancer-free around Feb/March 2018, but then right around the 6 month mark of remission (sept 2018) she started feeling pain in the kidney area. An initial ct scan revealed a tumour growing in her adrenal gland, 4 cm. Another more thorough ct scan 2 weeks later showed it had already grown to almost 5cm, so we knew were were dealing with something pretty aggressive. She went back on carbo/pax immediately, but had a severe allergic reaction to carboplatin, so they switched her to cisplatin/pax. After three treatments she had a scan and the tumour was 2 cm bigger, but the oncologist theorized that because the tumour was so fast-growing, it had likely grown and then shrunk during those three treatments, and would continue to shrink. This really didn’t sit right with me, but my mom’s ca125 was going down so that seemed to indicate something was working. We kept on with a few more treatments and were expecting to see the tumour shrink. However, her last ct scan revealed the disappointing news that the tumour actually just kept growing the whole time. Last time they checked it was 10cm which to me is incredibly alarming.
The oncologist decided to take a step back to do some tests in case it turned out it’s adrenal cancer we are dealing with (which is incredibly rare). The blood and urine tests for hormones showed no out-of-the-ordinary adrenal activity. The biopsy (a rather risky procedure, which is why the oncologist was reluctant to order one until now) unfortunately came back inconclusive as to the type of cancer cells in the growth.
Where we are now: Based on my mom’s history of ovarian cancer, and the appearance of this new tumour (cyst-like filled with liquid, growing on top rather than originating from within the adrenal gland), the oncologist is proceeding with the theory that this is a platinum-resistant recurrence of ovarian cancer. My mom is set to start in Doxil and Avastin in a week. The other option was going to Princess Margaret for a clinical trial, but that would take 4-6 weeks to get set up, and it doesn’t seem like we should be waiting that long. Surgery is not an option because it’s just over a year since her last one.
I realize I’m not the oncologist here, but all of this feels very uncertain to me and I keep wondering, what if they are wrong? It still feels like a big gamble. They were already wrong once when they thought the tumour was shrinking when it actually wasn’t. I am wondering what others would do/ what questions they would ask if they were in this situation.
Thanks!
Comments
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I don’t have any information that can help your situation, as I am newly diagnosed myself, but I hope you can get some answers for your mom.
i hope while she’s waiting for some definitive answers, she is feeling ok and comfortable.1 -
Hello @pattiezee - thank you for sharing your mom's story and hope you are both doing ok as can be today.
From the details, it is good that the DR team has a plan. It can be difficult to examine all the options - treatment vs trial. The best suggestion I can offer is to assemble all the questions, the options and have a discussion with the DR, NP and cancer team to help you look at what is best for your mom / family.
I'll also private message you.1 -
Thanks for your kind words, @collegal . I hope you are doing ok as well, and feeling ok as you navigate all of this. I know that you will find some awesome support through this community! Wishing you all the best.collegal said:I don’t have any information that can help your situation, as I am newly diagnosed myself, but I hope you can get some answers for your mom.
i hope while she’s waiting for some definitive answers, she is feeling ok and comfortable.0 -
Thank you, @Flowergirl . I am glad that there is a treatment plan, and thankful that at least my mom feels ok about it. Her attitude has been, “if this is what’s next, I am willling to accept it and fight through it.” She has been so positive through all of it, and has done incredibly well, and all of that has helped the rest of the family.Flowergirl said:Hello @pattiezee - thank you for sharing your mom's story and hope you are both doing ok as can be today.
From the details, it is good that the DR team has a plan. It can be difficult to examine all the options - treatment vs trial. The best suggestion I can offer is to assemble all the questions, the options and have a discussion with the DR, NP and cancer team to help you look at what is best for your mom / family.
I'll also private message you.
Thanks for messaging me - I will check that now.0 -
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