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A MyOvarianCancerTeam Member asked a question 💭
Philadelphia, PA

Has anyone here been diagnosed with high grade serous carcinoma? what has your experience been (how long you had it, treatment, prognosis). Thanks.

December 2, 2022
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Answer Summary

Members shared their experiences with high grade serous carcinoma, describing a range of timelines from initial diagnosis to recurrence, with... Read more

Members shared their experiences with high grade serous carcinoma, describing a range of timelines from initial diagnosis to recurrence, with many experiencing recurrence within six months to two years after first achieving no evidence of disease. Several members detailed their treatment journeys, including multiple rounds of chemotherapy regimens like carboplatin and paclitaxel, debulking surgeries removing ovaries, uterus, appendix, and affected bowel, and maintenance therapies such as Zejula or Avastin. A recurring theme was the emotional and physical toll of the disease, with members offering practical advice about managing post-surgical pain, staying positive through the uncertainty, and finding support in knowing others understand the relentless cycle of treatment, remission, and vigilance.

A MyOvarianCancerTeam Member

I was diagnosed with HGSOC Jan 2022. I did not have any surgery due to the large amount of small tissue implants seen during a laparoscopy done at Mayo in Rochester, NN. I had 7 rounds of chemo got my CA antigen down to normal range. My last lab work was up to 566. CT looked relatively unchanged so am waiting for my next recheck mid August. Other than becoming easily fatigued and short of breath due to pleural effusion my abdomen is always bloated and gets worse throughout the day when eating
Sometimes I feel eating is not worth the discomfort

June 21, 2023
A MyOvarianCancerTeam Member

I also had stage 3 high grade serous carcinoma which had spread to my colon last year.. I had major surgery involving removing ovaries,fallopian tubes, appendix and part of my colon. Prior to surgery my 125 antigen was 105. I joked that I was gutted like a fish but looking back on the entire process it wasn’t too bad. Of course there was pain and discomfort but you learn to listen to your body and pace yourself. I would say I was seriously on the mend and feeling stronger after a week or two. I was 78 when I started this process. I also had a colostomy so that was much worse emotionally than the surgery but I have learned to live with it. I suggest you keep a positive attitude. You will get thru this. As an update on my illness, it has been over a year since the surgery, I am off chemo and any maintenance drugs since last September. I had a scan last November and it was clear of cancer but am having another one April 26th.I’m hopeful scan will be clear but if not, I’ll deal with it. We really don’t have a choice, do we? So best to be positive and enjoy every day. Good luck.

April 19, 2023
A MyOvarianCancerTeam Member

I wish you well😀
It’s a crazy roller coaster of emotions that’s for sure xx

April 22, 2023
A MyOvarianCancerTeam Member

Debra6, I had a total hysterectomy and debulking (what an awful sounding word) on Nov 28 of 2022 and it’s still fresh on my mind. I know how it feels to be scared. I asked my doctor to give me an anti anxiety med and I do believe it helped. Your medical team will help you stay ahead of the pain. Just keep asking and they will give it to you as often as allowed. When you get home also keep ahead of the pain for a few days. And if you can, get a medical cannabis card. It has been a blessing for me. Your primary doctor should be able to help you apply for one.

December 28, 2022
A MyOvarianCancerTeam Member

Hi
I had Grade 3 aggressive diagnosed July 2020
Major surgery then left with stoma as bowel was affected
I feel extremely well and have no symptoms apart from very slight pain in left groin area
My CA 125 numbers are rising and I’m worried but can
face chemo

April 19, 2023

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