Scared Sh%&less

[OdieForever]

After some post-menopausal bleeding, I underwent a D &C and biopsy in late January of 2025. A few days later, I went online to check my results and was stunned and horrified to read the words "Endometrial Adenocarcinoma, grade 1". This was late on a Friday afternoon, and neither my GYN doctor, nor anyone else from the practice was available to discuss this with me. I spent 4 sleepless, angst-ridden nights before I could schedule an appointment with my GYN, (who was very annoyed that I had seen the results before he did).

I was referred to a GYN Oncologist and am now scheduled for a Total Hysterectomy and lymph node biopsies on 3/19. The thing that really gets to me is when doctors, as well as friends, ask me, "Why are you so upset? If you have to have cancer, this is the best kind to have. Besides, you don't need all that stuff anyway (meaning my uterus, ovaries, fallopian tubes, and cervix).

I must admit, I am very surprised and confused by the deep sense of loss (not to mention the overwhelming FEAR) that I've been feeling ever since that heart-stopping moment when I read my diagnosis. Anyway, that's my story ... and thanks for letting me vent.

[Kathy_SHARE Moderator Ambassador]

Hi,

Sorry you are going through this, but I completely understand how you are feeling. Not having a physician to talk to after a diagnosis like this is frustrating and frightening to say the least.

I had an unusual discharge which I knew was not normal after menopause, so I saw by gynecologist right away. After a hysteroscopy and biopsy, my doctor found endometrial cancer. However, she got the results on a Friday afternoon, called me with the news, and made an appointment for me to see an oncologist the following Monday. To this day, I appreciate everything she did to get the process started so quickly. She was as shocked as I was that this was cancer.

I was 67 years old when I diagnosed in 2015 with stage 1A, Grade 3 serous adenocarcinoma. It was caught very early, but since grade 3 is a more aggressive form, my doctors recommended a hysterectomy, removal of tubes/ovaries and a lymph node biopsy. They removed 16 lymph nodes. I have not had a recurrence up to now and feel very grateful for that.

Because of the electronic medical record, very often test results show up in patient portals before the provider has the opportunity to review them. It's outrageous that your doctor was "annoyed" that you saw the results before he did. He's annoyed??? You've got to be kidding! I certainly hope that your doctor is supportive and will answer all your questions. Make sure you get all the information you need to make a treatment decision. And if you are not happy with your physician, get a second opinion and find one who will listen and provide you with the best treatment advice. The one thing I've learned through all this is that sometimes we need to advocate for ourselves and that's not always easy. But we can't leave outselves in the hands of medical professionals who are not giving us the answers we need.

As for those who are asking questions and telling you not to be upset, you may need to stay away from these people for a while and surround yourself with more supportive people, like family and those friends who will help you through this.

I understand the fear and it's a scary time, but once you have a diagnosis and treatment plan, I think you will feel much more in control of things.

You might benefit from attending one of SHARE's Uterine Cancer Support Groups. The link is: sharecancersupport.org/uter...

We are a group of very supportive women who share each other's stories and experiences and are there for each other.

Please let us know how you're doing. Wish you all the best.

[OdieForever in reply to Kathy_SHARE]

Oh, thank you so much for your kind and insightful response. I was so touched by it that I cried for the first time since receiving the devastating news. And thank you for the info about sharecancersupport.org/uterine-cancer/. I will be sure to join. You have been so helpful.

[Oranglover]

sorry to hear Hiw you found the diagnosis. It should never be that way. My oncologists put a note that the results are not to be released except by them. I too was told if I had to get cancer the endometrial one was the one to get. I think they are trying to give us hope in the face of the diagnosis Try not to worry too much. I kniw that’s difficult And my advice is to not google fir info. Take care

[OdieForever in reply to Oranglover]

Thank you so much for your kind reply. It's amazing what a positive difference it makes to receive kindness and understanding at a time when I am feeling so frightened and bereft. Please know that your compassionate reply is profoundly appreciated, and I thank you for that.

[Oranglover]

hang in there! We’ve been there before you and made it and you can too!!

[Magnificent1]

I have Uterine stage 3a, since 1/2022. You are experiencing normal feelings. It sounds like your doctors are "on it". Surgery is set, then your doctors will develop a plan in response to the surgery, pathology etc. So you can move forward from one things to the next. The fact that it is low grade 1 is a plus. Try to focus on the good parts of a tough situation. Keep pressing on and know you are not alone.

[OdieForever in reply to Magnificent1]

Thank you so much, Magnificent1, for your kind and reassuring response. It feels good to know that I am not alone. Neither are you ... you are in my prayers.

[Seaglass57]

Hello there-

All of us know precisely what you are going through. A cancer diagnosis is a raging nightmare until you have a plan of treatment-even your surgery is a plan of treatment. When you have a treatment plan you are moving forward and that is how I got through my diagnosis in 2016 and recurrence in 2019. For me, it was all about putting one foot in front of the other and moving forward. It took a long time for me, but also trying my hardest to deal with one day at a time and not letting my anxiety pull me into 100 worse case scenarios. Therapy helped me to manage my anxiety, besides cancer support groups. I am sorry you have been told that this is a "good cancer" to get, because to anyone who has a cancer diagnosis, no cancer is a good cancer. Like someone suggested, surround yourself with people who understand the terror you are experiencing and find doctors you love and trust. Good luck to you, please update us, because we know this path and can offer support.

[OdieForever in reply to Seaglass57]

You have no idea how much your reply helped me ... especially the advice to not let my anxiety (which is higher than it's ever been in my life) pull me into all the possible "worst case scenarios". Thank you for understanding so well my state of a mind. Your words are of great comfort to me.

[LoveHighlands]

oh my goodness. I found out the same way. Mine read “serous adenocarcinoma stage 3b”. I had some heads up from the reaction of the OB/GYN. And the resident she was whispering to. Then a referral to a GYN Oncologist. but it was still a very scary and lonely weekend. I’m almost 7 years out from that weekend and I still remember that moment.

First of all, you’ve done a great job in reaching out to find the right support for yourself! There’s no better help than someone who’s walked that journey, so finding a supportive community like this will be a great help. I understand that there’s a share support group for those who are newly diagnosed too.

So, breathe. You’ve got this. Yes, life has dramatically changed for you and many don’t and can’t understand what it’s like. They’re lpeople that don’t know what to say so they end up putting their foot in their mouth. Then you’ll find those that can really help you with your fear and feelings. One of the best words of advice I received was “Don’t feed the fear.” So protect yourself from those who are less than helpful. I call them the “bless her heart” people. The well intentioned perhaps, but clueless. For me, it was a cousin who wanted me to forego any medical treatment and drink some grassy, manure smelling “natural “ cure Bless her heart. I’m not cow. On the opposite spectrum was a person who hit the internet and “chased every rabbit” out there. Surprising, it was me. Yeah Feeding my own fear. So, the answer for help is people in between, like this community, and hopefully your medical team. Which by the way, if they aren’t meeting your needs and supporting you, find one that does.

So breathe sister. You’ve got this. Treatment has greatly changed even since I went through that portion of my journey. And for those times when you feel you don’t have it under control? Remember, we’ve got you.

Blessings.

[OdieForever in reply to LoveHighlands]

Oh, thank you so much for your understanding and support, and especially for the term "Bless her heart people". I know exactly what you mean, and your comment gave me a much-needed chuckle. I recently had to put down my fifteen-year-old dog and I thought that things couldn't possibly get worse ... until I received my cancer diagnosis. I can't tell you how many well-meaning, but clueless comments I've received from the "bless-her-heart" people. I will take your advice to heart and try to just breathe, knowing that there are people like you and all the others in this support group who are shining a light on the path ahead. Thank you, from the bottom of my heart.

[Numbergrl]

I was there last year in May and a month later was under going surgery! And I think the biggest shock for me was the word cancer. It’s a terribly frightening word. But take a moment to breathe and talk to your doctors. That was the thing that was most helpful for me. You won’t have the total picture until the biopsy of the tissue and the report from it. It is a one day at a time process. Best wishes to you on your surgical recovery and what comes after.