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/StockButterfly8080]

The beginning of my symptoms similiar to yours. I thought I had an UTI as I have lupus as well. went to Dr and had blood/urine/swabs, all normal. Then all symptoms disappeared. 2 weeks later back again. Pelvic pain so bad I couldn't walk. Onto biopsy and then 2 weeks later got a phone call. An oncologist who told me it was Mesonephric Like Adenocarcinoma. She'd never treated it before so they were going to 'try' radiation. Had my first week and all good. I have always had bad sleeping so Dr prescribed a light anti depressant that I take around 8pm. I sleep really well. Still wake up sometimes in middle of night but overall I am sleep a lot better. I've made a decision to not fear it. I'm really glad you have a lovely family to support you. Don't forget you can talk to the nurses at your hospital and ask any questions or concerns you have.

[u/Ready-Sherbet-2741 → u/StockButterfly8080]

Great comments - thanks. May I ask which anti-depressant? Lack of sleep is my kryptonite currently.

I really like the idea of not fearing it. When I think about it logically fear does not help - it is like guilt completely pointless. But logic and my brain in panic are two different things!

the tip on talking to nurses is great. hopefully I’ll get to see the oncologist very soon.

Hope the radiation does the trick.

[u/no-user-names- → u/Ready-Sherbet-2741]

“Fear doesn’t help”, no it doesn’t, but it’s TOTALLY understandable. And panic too. BUT try to use the fear and panic energy positively to motivate yourself to get in the best possible state of fitness before surgery (core muscles, pelvic floor, heart and lung health). That’ll make recovery from hysterectomy so much easier.

And motivate yourself to be the outlier. There’s a book based on research, not woo woo (although a little woo woo has slipped through from her interviewees!) called Radical Remission. People dismissed from the health service with untreatable stage 4 cancers who have been told to go home and live their best life for as long as possible. Then they became NED.

The book lists the things they all had in common that they did. There are 10, and her latest research has just added another - exercise. (Radical Remission by Kelly A Turner)

[u/Ready-Sherbet-2741 → u/no-user-names-]

I will have a look at that. I’ve upped my exercise to manage stress so hopefully that will help.

[u/blue-violet- → u/Ready-Sherbet-2741]

I’m so sorry you are facing this diagnosis and am wishing you all the best.

Maybe check into cyclobenzaprine, which is a mild muscle relaxer. I take only 5mg before bed. It helps me sleep and even greatly lessens the jaw clenching I do all day and night. (This predates my cancer and hysterectomy.) If I take the full 10 mg dose I’m still very groggy after 8 hours sleep.

Sending you good thoughts.

[u/Ready-Sherbet-2741 → u/blue-violet-]

thanks for that. I will check it out.

[u/StockButterfly8080 → u/Ready-Sherbet-2741]

I'm in Australia, not sure of which country you are in and/or if meds are the same. Mine is called Loxalate 10mg. I was anxious too and not sleeping well at first. It's a lot to process so take your time. Thank you for your kind comments. A lot of good people on here too. I wish you well.

[u/Ready-Sherbet-2741 → u/StockButterfly8080]

Also in Australia. Thanks for the drug name. Have decided to whatever necessary to keep panic under control so I can manage. Thanks for your best wishes and to you too.