Just found out yesterday

I'm so relieved you found your way here quickly, although I'm so sorry about your diagnosis. You are in good company here, women who have experienced the diagnosis and can help you with solid advice.

All the best in this most difficult time, as CMB wisely notes.

Deb

Caledonia, we are here for you. I also had serous, hysterectomy, BSO, chemo and brachy. 2018. Good luck on your upcoming surgery and when you feel able, let us know how you are doing.

Denise

Hi, Caledonia! It's good that you noticed the changes and pursued an answer, even if it's not one you wanted. Best of luck with your further treatment!

Caledonia, I wholeheartedly second Cmb's tips to read What do you wish someone had told you? and Tips for surgery and after? (Cmb herself is full of great info.) The post that changed my life was this one by derMaus: "Lynch Syndrome, Tumor Testing, etc. The gene mutation you refer to - Lynch syndrome - can predispose you to all kinds of nastiness, and at a younger age. Mine was not diagnosed until after I already had cancer, and blessedly few in my family have had any problems. You will definitely want to request that test if they haven't already done it. You may also want to consider two other types of testing: geonomic tumor testing, usually done by Foundation One or similar. Last May the FDA approved Keytruda (immunotherapy) for use in any cancer, regardless of origin, that has been identified as having microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR); these attributes are defined in the test. The geonomic report will also list what treatments will work for your tumor type, e.g. immunotherapy, etc. Most times insurance will only pay for F1 after you've had a recurrence, so you're likely to be assigned the off-the-shelf formula as your first round of treatment unless you advocate strongly otherwise. Currently immunotherapy is used only in cases of recurrence, not as a first line, although that may be changing soon.

The other testing I wish I'd known about is a tumor assay. What they don't tell you is that chemotherapy generally has a low success rate. Pretty much everyone here who's had chemo was sent directly to the standard regimen, taxol and carboplatin. A very few people had something different to start with - I think KVDyson had tumor testing up front and a different course of treatment - but everyone generally gets the standard package. With luck you won't need chemo but, if you do, a tumor assay can help determine what type of chemo will work on your individual cancer. Note that tumor assays can only be done on live tissue so you have to request it before surgery. If I had to do it over I'd do the assay as well as the geonomic testing, even if I had to pay out of pocket for both." 

GREAT to hear from you, Caledonia! It sounds like you are taking care of yourself in the recovery stage and we look forward to what is the plan next. I wish I had walked more after my surgery and am always happy to hear others do.

Hugs

I'd also say don't hesitate to ask for stronger pain management if you need that. I have uterine GCS/MMMT, different from you, but part of my carcinoma component is what you have: serous. You've got this!

Caledonia--I love your name, I have to say.

We are all here for you.

Deb