Newly diagnosed and scared

@afraidinsd I believe some oncologists/cancer centres refer cancer patients to support groups fro their specific cancers. Could you ask your oncologist for a referral to one? Perhaps voicing your concerns in a support group would help …?

I also had high grade endometrial cancer, currently NED (no evidence of disease), with no significant markers. In my experience, oncologists will not discuss survival rates. I was a total mess, having picked up on the seriousness of my diagnosis from multiple physicians (I had 3 opinions) by what they said, what they didn’t say, their silent pauses, and their extended eye contact. I admit to googling survival rates and that set me off.
I finally contacted a few cancer support organizations: Cancer Support Community, SHARE, OCRA. I spoke with social workers who were great listeners. I could cry to them, but would never cry in front of my family. OCRA matched me with a cancer mentor who has been wonderful. I also asked my GP for a prescription to help with my anxiety and though I rarely used it, knowing it was there was a helpful. I would take one before a new experience (first chemo, first radiation) or still, when I feel the anxiety before a scan or reading a report on the portal.
Four years later, I am surprised to still be alive. I think this is why our doctors don’t throw numbers at us; it is a total crapshoot.
There have been new drugs available since my diagnosis and I hope that there will be a match for you. It’s great that your oncologist is consulting with the tumor board as this brings more knowledge into the planning.
I remember too well the panic of the stage you are now in. Sending hugs.
PS: I’m sorry that I cannot respond to the p53 question.
SHARE and OCRA have had webinars on EC genetic markers and treatments. Maybe you can check their websites and watch the recordings that seem relevant.

@ffr I'm unfamiliar with some of the organizations you mentioned. "OCRA matched me with a cancer mentor". Thank you for sharing this information. I'm going to look this up.

So sorry!!
OCRA = Ovarian Cancer Research Alliance. They support all gynecological cancer patients, not just ovarian.
SHARE Cancer Support does a lot for uterine cancer patients.
I have found both of these organizations to be most educational & supportive.
ECRF = Endometrial Cancer Research Foundation. This is a very new organization that is raising money for EC research (which there isn’t much of), as well as supporting patients.
CSC= Cancer Support Community, originally Gilda’s Club. They offer many support groups, etc.
I did not know about Mayo Clinic Connect soon enough, but it has become a wonderful resource for me recently and I’m glad that I am able to share my experience with newly diagnosed women in the forum.

Check out the websites to see what may mesh with needs.

@ffr Thank you!

Update…the tumor board met on Monday. Tuesday the nurse called to say that the board recommended POLE testing. I don’t know what that is but I won’t know results until late next week.
In addition my husband asked me for a divorce yesterday. As I have said before I struggle with anxiety and depression. The past year has been particularly difficult. My husband says he loves me but can’t do this anymore. He too suffers from depression. What do I do now? I’m going to go through this alone.

@afraidinsd First I'm going to tag @val64 as she is very knowledgeable about POLE testing. She started a discussion a few years ago on this topic and I hope that by reading through this discussion you will better understand what POLE testing is and what it is done.

- Mayo Clinic Connect: Was your endometrial cancer tested for mutations in the gene POLE? https://connect.mayoclinic.org/discussion/testing-endometrial-cancer-for-mutations-in-the-gene-pole/

-- Was your endometrial cancer tested for mutations in the gene POLE?

While I was relieved to hear that your case was discussed by the tumor board on Monday I was stunned by your news that followed about your husband and his desire for a divorce. I had endometrial cancer that was diagnosed in 2019 and I recall that punch in my gut I felt when I received that news. I've also been married and divorced and I recall a similar feeling of shock and gut punch when my now ex-husband admitted to me that he wanted a divorce. But in my case the cancer and the divorce happened many years apart. With the physical and emotional stress you are under it's no wonder you feel anxious, and depressed.

Do you have adult children or family who live near you and support you? Have you looked into the support groups recommended by @ffr? Do you already see a mental health therapist? If no, could you ask your cancer care team to refer you to their social worker? Many oncology departments have social workers who specialize in cancer and work with their patients.

@afraidinsd
Without commenting on your husband’s timing and without the expertise of Helen, I just want to say that I’m very sorry for the double whammy. If ever there was a time to reach out to friends this would be it. You need and deserve their love and devotion. Also, a trained social worker or therapist, as Helen suggested, would likely be very helpful. Remember: This is what they do.
Early in my journey when fear overcame me and I couldn’t sleep, someone (social worker or cancer mentor) recommended that I try writing things down. I still have my journal on the nightstand, though I don’t use it very often these days. But it does help me to get out my anger, fear, disappointments….. and sometimes to even reflect on my blessings. Sending hugs and wishing you strength.

@afraidinsd I am praying for you. Have y’all been through counseling? It can be very helpful. Also if you know the Lord Jesus as your Savior and Lord you can count on Him for comfort and peace. Get involved in a Bible teaching church for support. I have been a Christian for 50+ years. In Psalm 23 it says “though I walk through the valley of the shadow of death I will fear no evil for Thou (the Lord) are will me”. Cancer is a “valley of the shadow of death” not death but a shadow of it. He promises to be with those who put their trust in Him.

If you find yourself going through this alone, just know a lot of people are in the same boat and they’re doing just fine. I’m unmarried with no kids myself, and I don’t always feel comfortable reaching out to friends because of distance or what they’re dealing with. I’ve been thinking that in-person meetup groups with people in similar situations might be beneficial for me, but I haven’t had time to look into it yet. Maybe people here know of something (I'm in Los Angeles). If so, maybe we'd both benefit from learning about them.