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/Glittering_Hurry236 → u/Ready-Sherbet-2741]

Oh no I didn't see serous in your post! I'm so sorry.

Cross these treatment bridges as you get to them.

We have several women here going strong with serous - it will be a battle - and you will persevere. I have no doubt.

Valium was a God send. I've taken it before for dental appointments so I know it works.

Google is not our friend after a cancer diagnosis. Try not to google and focus on getting ready for your surgery. Planning meals and prepping them, I spent the days before surgery organizing everything I needed at shoulder height because I knew I couldn't bend down for six weeks, making meals and freezing some, loading up Netflix and Hulu with seasons and seasons of shows I would binge on the couch. I got peppermint tea and MiraLAX and Colace and a giant round donut pillow to sleep in so I wouldn't sleep on my sides, which was impossible for two months anyway. And I just kept as busy as possible and the days before surgery. I had six weeks from diagnosis to surgery day, and as the days grew closer to the hysterectomy, I would become more and more hysterical.

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

incredibly useful. thank you so much. I have my little family to help. They we will be with me all the way.

How often did you take Valium?

The amount of panic I am in is unbelievable. I think of people going through this and we all go through so much.

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

I got 10 mgs of diazepam (generic Valium) and I needed it only at night. I'd break it in half for a 5 mg dose so I could sleep. And used it in 1/4th's during the day if I needed it. I rarely used it during the day - but I did some days.

That's what these medications are for. I've been using benzodiazepines (Valium) for flights and dental appointments for 30 years. I'm not addicted to them and I use them as needed basis. I would say that a cancer diagnosis is a needed basis.

I still have some medical anxiety left. So I use I'll say 1/8th of a pill randomly at night when I get on a what if loop ..

I had skin cancer removed from my forehead, 2 1/2 months after the hysterectomy and it was not melanoma thank goodness it was basal cell, but it was on my forehead and left a silver dollar size hole in my forehead that took a very long time to heal after Moh's surgery to remove it.

And it was just one thing after the other last year and my nerves were completely an absolutely shot.

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

skin cancer - it really is one thing after another. I insist on a Valium for the dentist and it works a treat. I’m going to use as needed.

your comments were a big help. I feel like if I can manage the panic and the insomnia I have some hope of managing cancer.

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

Yes. You will manage the cancer. We have several serous here. It's definitely more harsh than endometriod carcinoma but you catch endometrial carcinoma too late. That's a disaster.

We all caught it when we caught it and just get thru the surgery then post op life begins ..

Since you know Valium you know it will work. Your nerves are shot right now due to the diagnosis and you need to sleep to cope and heal.

I'm glad you have your little family to surround you at this time and they will be a huge help 🧡

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

Yes. Just yes. Being sick with cancer is like moving to a different dimension. The rules have to change. and it’s so useful for wonderful people like you to just tell me how it is. ❤️