Rachel-Faye Endometrioid Ovarian Cancer Stage 1A Grade 1

[RachelFaye]

I was diagnosed on 9/11 /2018 on the phone having had debulking surgery on 20/8/18.

Total abdominal hysterectomy, Bilateral salpingo oopherectomy and omentectomy .

No chemo offerered just WATCH & WAIT for 5 years.

Year 1: 3-monthly CT scans and CA125s + consultation with gynae/oncologist

Year 2: 4- monthly CT scans and CA125s+ consultation witH gynae/oncologist

Year 3: I am waiting for 1 more CT scan CA125

Gnaw worried about radiation from scans for reassurance

I am grateful but worry about a recurrence

My CA125 was always normal even when I had a very large mass

Any sharing welcome 🙏

[Ugglan]

Hi Rachel,

I am sorry to hear about your diagnosis. I remember the chock and all the fear of being told it’s cancer.

Like you, my cancer was stage 1a, but clear cell, which ment I needed chemo. I had my last treatment a year ago and have checkups with CA125 and an exam every 3-4 months. No scans unless I have a rise in numbers or worrying symptoms.

Sometimes I wish I could have more scans, like you my CA125 was low before surgery, but I also worry about radiation. It’s hard to know what’s best, but it is not really up to me to decide - where I live it is not protocol to have scans for stage 1a checkups.

It is not easy to let go and not let the worrying take over, but somehow during this year I have managed to focus most of the anxiety to the weeks before checkups. I have one coming up next week, so now it is a bit overwhelming, but then (if test are ok) life will go on and I’m ok for another few months. All the best to you, I hope you are recovering well from surgery and have support to help you handle all the stress and anxiety with this diagnosis!

Lisa

[wendydee]

Hi Rachel,

It’s great that your treatment is going so well. The survival rate is very good for stage 1. I had a very similar diagnosis and treatment, in 2002, but without the CT scans, just a CA125 and manual examination. It was standard treatment back then. However, my CA125 was 545 pre-op and went down to anything between 9 and 18 in my check ups. The good news is that I have been well ever since and have had no recurrences

(fingers always crossed!).

I’m sure your treatment plan wouldn’t involve anything that puts you in any danger. However I know that there’s a danger of radiation. It’s a balance, isn’t it. I’m sure that you could ask any questions on this or get reassurance from your CNS or the support team helpline at Ovacome.

I’ve never quite lost the feeling that it could recur, a phenomenon that I think we all have, I’m so lucky that I’ve been well for 18 years, even after all this time, I have the number of the CNS team and I can ring them if I suspect anything weird is going on.

Fingers crossed for you, too.

Love Wendy xx

[GwenHP]

Hi Rachel,

Have you talked over your concerns about radiation with your doctor? They can explain what the risks are and then you can make a more informed decision whether you want to have CT-Scans less frequently or not. It's more difficult to monitor for recurrences when the CA125 isn't a good marker for someone. For some, they only have the CT-Scan and bimanual physical to help monitor them.

The other point is to make sure to listen to your body for possible symptoms...without going nuts. To help not freak out about every twitch and pain, I kept a journal to see if there was anything that was persistent. I'd document where the pain was, how sever it was, whether it was worse or better if I had experienced it the day before, and what kind of pain it was - sharp, dull, pulling etc... Once I wrote it down, I gave myself permission to let it go and not think about it until the night before my doctor's appointment. Then I would look back through my journal to see if there was anything that was persistent that I should bring to my doctor's attention.

Once we reach NED (no evidence of disease) our next challenge is to learn to live life again without being dominated by cancer.

Best wishes - Gwen

[RachelFaye in reply to GwenHP]

Your reply I have read several times and shall return to.

I shall ask my gynae/oncologist whenever I get a consultation re radiation and more or no scans.

I am going to start a heath journal, like you do, in advance of gynae appointment.

I hope to let you know of my outcome.

Very relevant life post NED and I hope life away from under the shadow of Ovarian Cancer.... please God

🙏Rachel Faye

[enam]

Same type, same stage, same surgery but in oct 2016.Till now Ned. i have one more control, in Kune and thats it.

Of course if...always of things stas good.

My protocol Is very similar. Now it Is uvf once in year and Magnet scan ( do not know world, engl Is not my first language) so there Is not radiation and much more clear.

I worries so much. Ladies From this site helped me to stay calm in horrible days.

I didnt have therapies except op but so worries about reccurence.

Do not worry, it will be ok.

When i Got my patologa report one doctor Said

Well, in one horrible lottary you Got the Best numbers. So you did it also. Enjoy your life.