Newly diagnosed and scared
I am a 54 year old woman recently diagnosed with stage ic grade 2 endometrial cancer. Six days ago I underwent a total hysterectomy. Afterwards I was told I have the p53 gene and my case will be reviewed by the tumor conference next week. Other than what I can understand from my pathology report I feel I I flying blind. I am scared to death and don’t know where to turn for support. My husband is trying his best to remain calm and positive but like me he suffers from anxiety. So I don’t want to share all the thoughts running through my mind. I have no children so that is not an option. My parents are in their 80s and my mom has dementia. My siblings and I are not close mostly due to differences of opinion.
My oncologist/surgeon is highly regarded in my area but is also known for her lack of bedside manner. After receiving the pathology results I reached out with a question regarding my chances of survival. I thought that was a fair question given the news of this P53 gene mutation. The response was leave this to us and focus on healing from your surgery. That is not a sufficient answer to give to someone with anxiety. Since the news I have had multiple panic attacks and that is just 36 hours ago! I can’t imagine living like this for another 7 days.
Does anyone else have the p53 gene mutation with stage 1 endometrial cancer? If so can you shed some light on the road I am traveling on? Thank you to anyone out there…
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@afraidinsd Hello again: such devastating personal news, which obviously makes your road that much more difficult. But as inquirer noted, you have company in being alone. I offer myself as an example: no partner/spouse/roommate, no kids or siblings or workmates (retired). Not even a deep bench of close local friends. But I continue to make it through. You will, too, because you have no choice. And you will find support from the most surprising sources.
I leave it to others to advise of the organizational providers of support: your oncology office, cancer-related NGO's, support groups, therapists, other local oncology servicers (for example, I get my treatment thru a community oncology entity, but my large metro area has several top-notch university and hospital oncology centers). That's where a lot of the work comes in - contacting all those entities and finding the right fit for you. But at least it keeps you busy!
What I wanted to cover here is dealing with the feeling of being alone. We all have different ways of dealing with cancer. I decided to share my diagnosis w/ just about anybody. Managing alone w/ Stage IVC cancer is impossible. One of my biggest challenges is getting rides for all the surgeries, biopsies, procedures. I'm not inclined to ask for help, but I had to. And you know what? I cobbled together a team of drivers from neighbors to friends to acquaintances. And developed much stronger relationships while sitting side by side in the dark cold mornings navigating city streets while discussing life. (Having to be at the hospital by 6 a.m. is such an inconvenience.)
I talked about cancer in the dentist's waiting room and discovered my two fellow waitees had their own cancer stories. We had a 15-minute impromptu support group. A close friend traveled 600 miles (RT) to care for me after surgery after getting permission to work from my house remotely. Enough people stepped up with rides, meals, listening ears, snow shoveling, etc. And it's often the ones you would never expect. I predict that in the nearish time you will have somebody in your life who is a big support, and you haven't even met them yet. In some ways cancer shrinks your world, but it broadens it in other ways. It's not always horrible, there will likely be sweet moments of appreciation where you feel connected to life and humanity and the world. You may not feel that now but I hope it is in your future.
As I gained my footing I got deeper into researching endometrial cancer. I find it relaxing to watch Continuing Medical Education videos on YouTube where international cancer experts are giddy with excitement at new treatments on the horizon. Their excitement fosters my hope. It's my way of feeling in control. You will see others on this site have their own ways of feeling in control: religion, diet, exercise. I trust you will find your own approach that helps you keep your anxiety at bay.
You can do this. There are others out there, known and unknown, who are waiting to help you. You just need to reach out, and you will get support. Not everyone will be there for you, but in the end it will be enough. Truly.
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6 ReactionsCheers to what Blanchette said so beautifully. Many of us, married or not, navigate this “alone.” Indeed, many of us are caregivers for others, which can complicate our journey as well. We all find support, and hope, in surprising places along the way. You are well-positioned for a full recovery. Embrace the journey, open your heart, and you may be surprised where the journey takes you. In the meantime, we are here for you!
My heart goes out to you for all you’re going through. The Ovarian Cancer Research Alliance (OCRA) has a free counseling program for patients with gynecological cancer. (It doesn’t have to be ovarian.) Their website is
ocrahope.org . Open the menu, click Support & Resources.
Look for Steps 1:1 Counseling. Hang in there! ✌️