Newly diagnosed high grade serous carcinoma

[u/Ready-Sherbet-2741]

I am now waiting for scan results to check spread. The stats on this cancer are terrible. I am 56 years old.

My symptom journey started with mild but persistent pelvic pain. Also started having changes in BMs. More D. Also, worsening insomnia. After a few weeks, I went to doctor and ultrasound showed 6mm lining but otherwise normal. Spotted blood with a BM then GP ordered a CT scan. Normal. Did a Pap smear also normal. A few weeks later a big bleed and went to ED. Then I was referred for a biopsy. I opted to go D&C/Hysteroscopy which happened last Wednesday. Gyno told me it looked like cancer after I woke up. Pathology confirmed the cancer.

Now a lot of crying and anxiety that is uncontrollable. Facing mortality with chronic insomnia is just bad. I share my home with my wonderful brother and one of my adult children still lives with me. I was widowed at 35 so my little family is everything. I am so upset that my children face losing their remaining parent. my adult child who lives at home is my best buddy.

I am being referred to the Gynaecology oncology team at my local hospital next week. Any tips for coping? Does anyone know why the cancer causes insomnia? medication?

[u/Glittering_Hurry236]

We've all been here. The early days are the absolute worst.

I was becoming hysterical constantly after diagnosis and could not function. I had a baby a few months before I turned 43 and could not believe 10 years later I could be leaving my child without a mother, and I don't know it just never occurred to me that I could get cancer, how stupid of me - but it's really what I thought...

I saw myself living to 100 in good health because I was fit and healthy and knock on wood. Nothing had ever happened to me before.

So. This was a shock. I went to my GP and bless her heart I was SO hysterical and shaking and asked for Valium and she gave me a years worth.

I'm 14 months postop and barely need it now; but I certainly needed it in the early days.

The cancer doesn't cause insomnia as far as I know but hormones do -- and loss of them which at our happens to all of us.

So, you can ask your doctor for an anti-anxiety, especially with your insomnia. For insomnia, I would say physically exhaust yourself with exercise and take Benadryl or whatever you have to do to fall asleep, especially now.

The early days pre surgery you're in right now is the worst, even if you find out, God forbid your stage three you will at least know the plan and you will have support thru your cancer center and a plan.

Endometrial cancer has a high cure rate. You have every reason to believe you will be cured. It might look gnarly. The hysterectomy absolutely sucks - losing your ovaries absolutely sucks. Becoming Postmenopausal overnight absolutely sucks. I was 53 and not menopausal before my hysterectomy.

You might need chemo, you might not you might cold cap while you do chemo and not lose your hair; you might do radiation and you might not, but you will very soon get this hysterectomy done and get your staging done.

You might only need the hysterectomy and that will be it and you'll get checked every three months for 2 to 5 years. And that's the best case scenario for endometrial cancer.

You have every reason to believe you will be cured and become a survivor.

[u/Ready-Sherbet-2741 → u/Glittering_Hurry236]

Thanks for that. My serous carcinoma is difficult to cure. It’s more of a management thing according to my reading. Late stages 3 or 4 the prognosis for 5 years is dismal (according to a scientific paper I read). I can only cross bridges when I get to them.

I will definitely look Into anti-anxiety medication. I’m currently taking paracetamol but this is not doing a great deal! It does help with some of the panic and shaking.

I am so glad you are a survivor. I live in hope.

[u/Alienspacedolphin → u/Ready-Sherbet-2741]

You never know. (I got stupidly, ridiculously lucky in how early they caught my mixed serous- two years ago at 51. Zero risk factors. The scan looked like maybe there was omental involvement, but no. Apparently they got it all with the D&C? I’m fine now. Life is good and I don’t take anything for granted. I’m just happy to be here. )

The weeks before surgery sucked so bad. I’m a statistician and have an MD (don’t practice clinically) so of course i looked things up. I had to tell my teens, who lost their dad to AML.

To sleep? I went for 10+ mile runs most days and drank more wine than was probably good for me. Do whatever you need to.

I’m a statistician- Ignore the stats. Treatments are advancing so quickly today that by the time they are published they are applicable anymore. My first husband had a cell type with an absolute shit prognosis, and lived almost 2 years past his second transplant failure. At that time he supposedly had just a few weeks. (He kept going, because new drug trials kept coming out, most of which are approved and standard)

Statistics are useful only so far as they help docs determine what treatments are better on average than others for most people. No stat ever will tell you what will happen to you. You already ‘broke’ the odds by getting a rare type, so there no reason at all that you might not be that person like me who gets stupid lucky, or that responds exceptionally well to treatment. Miracles are really very common- they happen to someone every day.

I wish the best for you.

[u/Ready-Sherbet-2741 → u/Alienspacedolphin]

Thanks for your wonderful comments. Explaining it to the kids was awful. They lost their father already. But they both assured me that they will be Ok but I’m not dead yet so will just face it as needed. Kids are amazing when they have already lost someone.

I am exercising twice a day, meditating but will also get medicated if only to get through the start.

thanks for your best wishes. I intend to keep everyone updated.