Living a long time with late stage Ovarian/peritoneal cancer

[TinaB1]

Hello All...

I hope so many people are as well as they can be.

It's a long time since I've posted. Mostly, it's because of the grief I've felt over losing so many friends here from the disease and also losing my lovely brother-in-law and my own dear, beautiful sister.

Really, I don't want this post to be a 'Too Long, Didn't Read' one, but it will be a bit long otherwise I can't recount what has happened to me.

I first encountered Ovarian in 2011 when I was taken to A and E and admitted to hospital. I was very sick and full of tears with the pain of it all. I stayed in hospital for eighteen days and the day before I was discharged, the nurse told me I'd been in a very dark place. I was told that I had Ovarian cancer and that it was advanced. That day, I had three and a half litres of cancerous fluid drained from my abdomen. It was a relief to say the least but there was still more in there which couldn't be drained as the fluid was in pockets. I don't quite know what that means, but there it is.

I was drained and physically weak and then I had chemo to face. Because I was told that I had low grade Ovarian, I was given double dose carboplatin. Taxol could be a back up. Low grade doesn't respond well to chemo but I was told at the half way point that I had had a partial response to treatment. I was elated because with low grade, a partial response is a good response. And it was a good response for me because, although I felt pretty rough at the time, I was getting about a little and smelling the roses.

In 2013, about two and a half years later, I felt very sick and had to go to the Walk-in centre after dialling the Government's Helpline. Again, it was crying time (which isn't very often in my case), and I was admitted to hospital. I felt that this would be the end. I was diagnosed with a necrotic tumour which was stuck in a hernia. I don't think it was necrotic because it had stuck in the hernia. Rather, it was a necrotic tumour attached to my intestine which was protruding through my abdomen. I was very sick and after it was removed, my surgeon told me that the cancer was across my abdomen and that my cancer was advanced. Only the necrotic tumour was removed, nothing else. I was still palliative.

It took ages to heal. The scar I mean. Early the following year, in 2014, I was referred to the local hospice.

So, there we are, the end of the 'Too Long, Didn't Read' post almost. I hope you can read to the end.

Today, I visited the skin clinic to discuss another issue with another consultant. She told me that I had pointed out from the notes that I have late stage cancer. She said that I clearly wasn't as I had survived for eleven years and that I looked well. I went through the above with her and told her that I was absolutely amazed, that despite having high grade (I was reassessed) Ovarian, I am alive. Many people I've known haven't had that experience. I feel very sad about that.

So, have I still got cancer? That's hard to say because, despite having a partial response, I haven't had a scan since September 2013. I asked my oncologist at the time whether I'd have treatment like chemotherapy if my cancer had grown. That would make sense, wouldn't it? She told me, which I already knew but hadn't taken in the enormity of the word, that I was palliative. It means that only the symptoms are treated. That also means, I now know. that other disciplines treat me with palliative in mind. It does have an impact on how a patient is treated when diseases crop up. Who would want to do any radical treatment on a person who is going to lose their life?

The reason I'm posting this is because I have survived. I haven't died. It's eleven years, as I said, Covid and all.

I was wondering if there is someone out there, like me. Having had late stage disease, I mean. Late stage survivors who've had hardly any treatment apart from a first round of chemo?

Obviously, I'm glad. I sent for my notes to check I wasn't crazy. I wanted to know that I wasn't like the guy from Sixth Sense. I wanted to know that I was getting better. And I feel that I am. Getting better, I mean.

Well, enough of this 'Too Long, Didn't Read' Post.

I wish you all well.

All good things to everyone.

Sue

[Lyndy2]

Hi Sue, thanks for sharing your story. You do seem to have been very lucky, which is great but I am a bit shocked at how you’ve been treated (or not treated!). I hope you can reap the rewards now as a long term survivor xx

[TinaB1 in reply to Lyndy2]

Hi there...

I know what you mean, but I was treated very well..

[Kblaisel]

Very inspiring story! I would ask for regular CA-125 tests to monitor. Best wishes for a long healthy life!

[TinaB1 in reply to Kblaisel]

When I was first diagnosed, my CA125 was 15 and 9 after treatment. I think anything over 35 is usually the marker. So the test isn't a good one for me. That's why it's hard to know where I'm at, but at least the dreaded ascites hasn't resurfaced. Keeping my fingers crossed!

[Kblaisel in reply to TinaB1]

CA-125 was not a good indicator for my friend’s OC. Her oncologist used a different tumor marker test. I believe it was called HE-4. That’s how she was monitored. Maybe you can ask for that test.

[TinaB1 in reply to Kblaisel]

I'll mention that to my oncologist... Thanks for the tip!

[delia2 in reply to Kblaisel]

my ca 125 is not a marker either and I asked the nurse practitioner I saw last time about HE 4 and she had never heard about it even though I got to Dana Farber, a top US cancer center. I’d like be to have something like that.

[TinaB1]

Thank you.

Yes, there are people who move on with their lives. Sometimes, they do revisit particularly when they need treatment again. I've seen that here over the years.

My aunt once introduced me to her friend who'd lived with the disease for thirty years and was still having yearly checkups at the Liverpool Women's. I was heartened by that.

[Itha]

WOW! Thanks for sharing...there is hope. Not for everyone unfortunately but for some...