Mesonephric adenocarcinoma...anyone?

@kirlizee
It took 8 months to get a diagnosis as the gynaecologist I had been referred to near my home kept dismissing it. It was only when I asked for my file to be sent to a cancer centre in the city did things speed up. Cancer centre immediately diagnosed after biopsy ( I had 2 previous biopsies, ultrasounds and MRI with other doc showing something but she didn’t act on it) and confirmed mesonephric cervical cancer. They also confirmed my original MRI was misread as it said was contained but when cancer centre radiologists reviewed it they said had spread. So I was classified as stage 2b and hysterectomy not an option any more. I had chemo/rads and brachytherapy x 3. Thank you for reaching back and I will check out the Reddit link. I know there is a clinical trial at Sloan Kettering in NY that is showing promising results for mesonephric cancer. I hope you continue to keep this in check and I agree it is lousy luck to get this one.

@mariannie2 I am hoping the PET scan and ultrasound guided biopsy will provide you and your cancer care team with additional information to guide your treatment.

Where are you reading the information? I stay away from Googling and try to find valid and reliable websites where I can better trust the information. What are these websites? These will generally be websites that end with .org or .edu such as MayoClinic.org. Sometimes the websites will be U.S. government websites that end in .gov such as NIH. If you find websites in other countries such as Canada then the website will end with .ca.

Another good option is to search Google Scholar. You will find articles and information more likely to be valid and reliable. You get there by typing Google Scholar in the Search bar or click on this:

-- https://scholar.google.com/

I understand feeling overwhelmed as I felt that way when I was first diagnosed with endometrial cancer and then had a recurrence two years later. Are you interested in looking for another medical opinion at a different cancer care center?

@naturegirl5
Thanks for all your research tips! I am sticking only to reputable sites for my info. I am considering getting another opinion and will be looking into this option this week. Trying to stay positive as I navigate all the hills and valleys. I hope you are doing well with your journey.

@mariannie2 i was in it! Seven months until it stopped working which was more effective than anything yet. Very positive experience, the team was great. That diagnosis delay sucks.I would be so annoyed.

@kirlizee
So glad to hear it worked for you but wish it had continued to work. Did they tell you why your cancer stopped responding to MSK clinical trial? From what I had read it seemed to be so so promising for us mesonephric people.

@kirlizee
Sorry also wanted to ask about person at Jo’s Trust who is still living after 14 years… is she chatting with you? I’m just wondering about what she had done due to length of time still living. Does she still chat on forums? Also my doctor has said at cancer centre where I am being treated they have seen quite a few women with this and they suspect more women world wide have it but get misdiagnosed with cell type. So I am thinking maybe not as rare as initially thought.

@mariannie2 Thank you for your reply and good wishes.

I have another 6 month appointment coming up in June in my cancer survivorship journey. I get very nervous before these appointments.

Here is a resource to consider as you think about getting another opinion. Are you in the U.S.? If yes, then this website offers some direction.

NCI (National Cancer Institute) Designated Cancer Centers (you will notice that Mayo Clinic is listed here):

-- https://www.cancer.gov/research/infrastructure/cancer-centers/find

Will you come back and let me know what you decide about a second opinion?

@naturegirl5
Sending positive thoughts for your June appointments. I completely understand your anxiety as I think most of us feel this. I will update as I go along. I still have PET scan this week and ultrasound biopsy the following week to get through. Then I suppose decisions to be made. Thanks for all your feedback -much appreciated!!

@mariannie2 Jo’s trust shut down abruptly last year so I don't have a way to find her but she never had a recurrence which would certainly be a better spot to be in. Only had a username and no email.

MSK didn’t have a specific reason for why the avutometinib/defactinib stopped working but there were indeed promising results for a year+ for many in the trial. Of the cervical patients, it had a roughly 1 in 3 response. The trial was designed more for ovarian patients but accepted any mesonephric gyn cancers with measurable disease.

The rollercoaster of new treatment about every 3-4 months is ultimately what gets to me. You just feel like you're blasting through options trying to buy time.

@kirlizee
Thanks for your reply. I am just now beginning to realize the roller coaster feelings. I think I was naive, perhaps wishfully so. Emotionally not great but trying to move forward. The woman at Jo’s Trust must have been caught so very early with no cell migration. I keep hearing there are so few of us but then my doctors say they have seen quite a few and feel many are misdiagnosed. I noticed MD Anderson has a registry for mesonephric like cancers and I wish another centre would start one for mesonephric as I think if people started being accumulated it may help with future research and funding. Just a thought. Thanks again for your info and sending positive thoughts to you.