Newly diagnosed and scared

Hello: I’m sorry to hear what you are going through. I received my diagnosis of stage IIcm (p53 abn) last spring and had a hysterectomy et al in May. So yes, my tumor had that gene mutation. Myo invasion was less than 50% and there was no lymph node involvement.
I recommend you see another gynecologist/oncologist who can explain your condition and provide you with survival numbers and treatment options. You should also seek survivorship care which is available in most areas and includes behavioral health support.
The burden of a cancer diagnosis is heavy and you need to feel supported during your journey. There is hope. You are not alone.

I have p53 as well, but first you have to calm yourself and your husband. We all went thru this and right now your doctor gave you good advice, get thru the recovery of the surgery first. Then one by one you will Research. I have stage 3c2, this is a great place to start. Google credible sites and don't take AI as medical advice but information to act on. Use it to go to actual doctors . U tube has several that seem to give insight into our condition. There will be recommendations from your own doctor if you feel uncomfortable get a second opinion before you make a decision. PRAY and Relax. I'm 81 you are 54 you are ahead of it already. Looking forward to hearing more from you.

hello afraid - I am so sorry you have joined our endometrial cancer club, but I hope you find a lot of needed support here at mayoconnect.

A little background on me: I was diagnosed w/ stage IV endometrial cancer in Nov 2023. I've been NED since April 2024 following surgery and chemo/immunotherapy (Keytruda). I do not have a p53 gene mutation.

For many of us the time after diagnosis and following initial genetic/pathology reports is the worst. You're waiting for your team to develop a treatment plan. The waiting is really difficult. It could be helpful to find at least one person w/ whom you can share your worst thoughts w/out judgment. Your oncology office should have lots of (or at lest a few) people there to help you connect w/ available resources. My community oncology infusion room had a corkboard w/ info from various organizations available for support. That's how I found my local in-person support group. And one of my best friends had breast cancer many years ago and has been a great listener.

As to prognosis, I think it's waaaay too early to expect one. I asked my med oncologist for a general prognosis following my diagnosis; he explained that it was early and there were far too many variables to give any kind of prediction. First off he needed to see how well I responded to first line treatment. (It turns out I had a complete response almost immediately. My lung mets disappeared in a couple of months). You can go online and determine the median survival rate for your stage and grade, but that's not terribly informative. The median survival rate for my stage predicted I had a 50% chance of being dead by June 2024. And yet here I am in March 2026. Not even close to being dead. You will read many stories on this site of folks far outlasting the odds indicated by conventional wisdom. Part of it is that there are new treatments being developed all the time and published studies have not kept up. In sum, a prognosis right now doesn't mean a lot.

Obviously the best thing now is to get a handle on your anxiety, I'm a big believer in the power of modern pharma, which my onc office supports. I'm a fan of ativan - occasionally. And all the other usual coping mechanisms: physical (for me it's walking or yardwork); and emotional (talking to friends and support group). During a particular low point my onc offered me the service of their therapist. It's nice to know that's a possibility but I didn't pursue it. I didn't have the energy for yet another appointment.

Which leads to my last point: having cancer is a lot of work. A whole lot. There is so much to do, to learn. We can learn a lot from other's experiences and advice, but you are the only one who knows you. Right now the not knowing very much is truly challenging and anxiety producing. I hope you will find it a bit easier as you get to know/trust your team better and can rely on yourself as you realize that you have strengths you had no clue were there. One foot in front of the other, deep breaths, etc. Sending you my warmest wishes. Do keep us posted because there are tons of us reading your story who have been there and care.

@afraidinsd Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support Group. Like all the members in our group I was diagnosed and treated for cancer.

I first want to say that I have a history of anxiety and panic attacks. When I received my initial diagnosis (endometrioid adenocarcinoma, Grade 2) my anxiety did not go through the roof as I expected it to. I think my wisdom and coping skills I've gained over many years helped me a lot. So I can very much relate to how you are feeling. I was frightened and every thought seem to focus on my diagnosis. I realized during this process of radical hysterectomy followed by waiting for pathology to diagnose stage (I was stage 1a) that my worries are about what < could happen>. Not what had happened. Once I talked with my gyn/oncologist about plans and after surgery received a Cancer Survivorship Plan, I became calmer. I also learned about Hope with a capital H. Hope is optimistic outcome with a plan. Those two elements - optimistic for the best outcome coupled with how you will get there is key.

I'm more than a little annoyed that your gyn/oncologist did not answer question about survival rates. I do not have the P53 gene. I was certainly want to know from my treating medical provider what all of this means and I think your question is very reasonable. We are not medical professionals here on Mayo Clinic Connect however as you already see we do offer our support and share our own experiences. In my experience my doctors answered my questions about survival. They also said what @blanchette shared. By the time something is published (which can take a few years from the collection of the data to publication) the information is a few years old. My surgery and all of my follow-up appointments have been at a national cancer care center (Mayo Clinic). My gyn/oncologist works with others in her field and benefits from the scientific knowledge available at Mayo Clinic.

I also recommend avoiding Google searches and AI. Our director @colleenyoung wrote an excellent blog here on Mayo Clinic Connect on what AI can do and what it does not do well. Relying on AI for your health and medical information is one of the many areas AI does badly and many of us have caught misinformation that is downright frightening. In addition, many of the websites that come up in a Google search contains information that is not reliable or valid and is downright scary.

Mayo Clinic Connect--Can you trust AI for health advice:

-- https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/can-you-trust-ai-for-health-advice/

Do you see a mental health therapist? Do you already practice skills you have learned such as exercise (walking), mindfulness-based meditation?

Great advice here, especially about doing your own research and using tools like AI to better understand (but not as a final authority). I use ChatGPT after hearing on LAist radio that they're contracted to develop tools for the medical community. You can paste in your entire medical report and get a simple interpretation, then ask it follow-up questions about your specific situation. I then discuss what I learn with my oncologist for the things that matter most to me. I was diagnosed with stage 1 endometrial cancer and had surgery last June. I researched everything from difficult choices I had make with my oncologist (chemo vs no chemo) to the supplements that may help me to help myself.

I have serous cell endometrial cancer. It is stage 3C1--much worse than your diagnosis. I too have p53 mutation. Chances of my survival are slim. But I'm still here int he third year after my diagnosis. Like you I had a radical hysterectomy - everything removed) and it took 6 weeks to heal sufficiently to begin chemo treatment. I could not opt for radiation since I've had my life-time exposure.
Now, as far as getting an answer to your survival probability, oncologists don't like to answer that since they don't know. Everyone is different, or responds differently to treatment. My oncologists refrained from answering me when I asked: How long do I have?": the first one didn't answer, just mumbled something I couldn't hear and then when I asked to speak up he got agitated and ran out of the room. The second one said she didn't know and everybody responds different to treatment. the treatment I'm on now is Enhertu. It's working well.
So, I would take your oncologist's advice and focus on healing first. Try not to stress out, easier said than done, but know you're in capable hands. You can always google the odds, keeping in mind that everybody is different.

Oh my goodness! Thank you all so very much for your support! Your words have given me hope that I did not have yesterday.
As @inquirer suggested I put my pathology results into CoPilot and ask for a list of questions. I have them printed and ready to ask when I meet with my oncologist.
Again thank you so much for your support! I will keep you posted along this journey.

@inquirer Thank you for your excellent advice. I'd like to share and caution that pasting your entire pathology report into ChatGPT opens up confidentiality issues. ChatGPT is not HIPAA compliant and so when any of us submit or upload or paste our personal information into this tool it is "out there" in the internet. I suppose one might paste a few sentences here and there into ChatGPT without any identifying information.

@afraidinsd Fantastic! Also, if your oncologist has been practicing as long as mine (over 30 years), I like to ask them to speak in terms of what they’ve personally seen in patients like me.

For example, the standard statistic is that 30% of Stage 1 patients recur. But when I asked about his own patients who were in my situation, he said it was under 5%. I attributed that to his aggressive surgical approach and the specifics of my particular case.

I try to get past the doctor giving me standard jargon you can find on the internet and instead get real world insights based on his own experience. It'll tell you a lot about him. You want to know that he is an aggressive fighter.

@naturegirl5 Thank you Helen. I specifically asked Chatgpt about that and it said the data is gone and not retained (especially when you don't have an account) after each session is closed, but I guess it could be misleading me in some way.