OC stage 3 came back

[Harp-1]

My sis was diagnosed with OC stage 3 met to omentum just last year in May. Now she has reoccurrence in omentum and colon. What does it mean and why it came back so fast. Anyone can give us hopes from same experience?

[Irisisme]

Hi Harp-1,

You don’t supply a lot of details as to your sister’s circumstances, e.g. what chemo she had or what surgery she had but recurrences are something many with OC live with.

OC is a cancer that can be lived with for many years but has a nasty habit or recurring. Think of it as a disease that must be endured. Yes, it is a life-shortener, but many on this forum have lasted many years since diagnosis - including many who have survived recurrences. Most importantly, many of us are still enjoying life, although having had to make adjustments.

I wish you and your sister the very best of luck; and a couple of hugs.

Iris🍀🤗🍀🤗

[Harp-1 in reply to Irisisme]

Thanks for support!

[testarossa71]

Hi Harp1,

Your message is a little short on detail to be able to comment but I echo what Iris has said.

[Edited by moderator] You don't say whether she has had surgery or not, but as she appears to still have her omentum, I'm going to presume that she has not. This is often removed in debulking surgery. She may be offered surgery now - possibly to remove the omentum, and/or possibly to resection the bowel (cutting out the diseased area), which may or may not lead to her having a stoma. Or her team may decide that surgery would not offer enough benefit to outweigh the potential risks. She may also be offered second line chemo - again, it's hard to know what her palliative treatment options might be with so little detail in your post.

Your sister needs to speak with her consultant (or her CNS, at the very least), and find out what second line treatments they are considering for her. They should be consulting with your sister and explaining clearly what their recommendations are, and why ('No decisions about me, without me').

Lots of women here have been living with OC for years, often with several recurrences, and are still living lives full of love, activity, and joy. Get the information your sister needs from her Onco team and you will be better informed to know what the future might hold.

Wishing you both luck and love,

Annie x

[Harp-1 in reply to testarossa71]

She had a debulking surgery back in November. They did hysterectomy and partial omentum removal. Now team is saying no surgery only monthly chemo?

[testarossa71 in reply to Harp-1]

I can't comment on why they are suggesting this - only your consultant can really do that. If your sister is feeling like she needs more information, she could try her Clinical Nurse Specialist (CNS) initially to ask for an explanation. If she doesn't get what she needs from the CNS, she can ask to have a call/appt with the consultant. S/he should be able to explain how they've reached the treatment regime they've decided upon, and answer any other questions your sister may have about that.

I find it's helpful to have a list of questions that I want to ask my consultant so I don't forget anything. I also try and remind him each time I see him, that there should be 'no decision about me, without me' - so that they know I want to be informed about and involved in any treatment decision they think might be good for me. Your sister may not feel that way, and that's fine - but she has a right to know about anything that has an impact on her health, treatment, quality of life, etc.

Your sister is lucky to have your support. I hope she gets the answers she seeks soon.

Annie x

[Harp-1 in reply to testarossa71]

Thanks!

[candyapplegrey]

it's very hard. like your sister i was diagnosed last year (in july, 2a, g3). i had full hysto, taking out omentum, tubes, lymph nodes, etc. 6 months chemo. and now less than a year since diagnosis and only 6 months from last treatment, i have a nodule at my navel and they're saying changes to liver (whatever that means). i need another op. and may need more chemo. it's depressing i know. at the moment, as i'm fit, am trying to squeeze in as many sets of tennis as i can ... and watching the olympics. and s*d the housework.

stay strong for your sister. mine is doing a great job as chief researcher for alternative treatments.

candy xx

[Belladrum]

So sorry to hear you and your family going through this. I similarly was diagnosed with Stage 3 disease in March 2020, with recurrence a few months later, and while did have second surgery, and now have a stoma, had a further recurrence, all within 9 months. No more conventional treatment available, but I am now on a clinical trial, so not sure if that is something your sister could consider/would be eligible for? Wishing you and your sister all the very best in dealing with this awful disease. X

[MarleyZ]

Hi Harp ... recurrence does seem to be part of a lottery draw some get that fast others do not, I had the full operations to to remove a tumour/de-baulking surgery and appendix removal alongside a large intestinal re-section that all happend in January 2020 this year I had a mass growth which needed removing this was in the groin area as it was leaning on the small intestine ( guess it felt left out in 2020) had another re-section done May of this year along with nodules being checked and scrapping the hard bits that gathered at the top of the under carriage of the rib cage ... all good stuff ... in reference to the your question why does it come back that fast I did ask my surgeon, its simple in that as they say cancer free after the op I had in 2020, they base that on only what they can see, any thing that is unable to be picked up can end up with a occurrence starting up again, your sister needs to ask for a PET scan etc if they havent already done that but above all she needs to know its treatable and beatable ( not cureable yet ) so tell her to be positive and look to what is being offered to her if that is an op to correct her diagnosis or chemo etc ... wish her well on her journey.

[Supermary]

Stage 3 or4 has a very high chance of recurrence

You should ask what her tumor markers and pathology report is

Some mutations are more aggressive and hence have a higher chance of recurrence

You didn’t provide much specific detail

Based on the pathology the doctors can look forward medicines that may help

They are more targeted chemos and mess

Hope this helps

Margaret

[delia2]

Hi. I am guessing by the fact that you said once a month the chemo will be caelyx and carbo? I found it quite manageable. I then went on Olaparib, a PARP inhibitor which has kept me in remission for fifteen months. As. Others said she needs genetic testing for future decision making.

[Harp-1]

Thanks all!

[Tabor]

Hello Harp-1, I feel the hurt in your post be assured you have great ladies here giving caring advice. My story started in 1999 through the years I’ve had to receive chemo treatments 4 different times with the last chemo rounds in 2018 and then was put on maintenance Rubraca because found out I’m brac2 positive. Help your sister and your self to stay strong and positive. Praying for you both. God Bless

[Harp-1]

What stage was it?

[OvacomeSupport Partner My Ovacome Team]

Hi Harp-1

I’m really sorry to hear about your sister’s recurrence. I can see that there have been lots of supportive and informative responses from the forum community, but just wanted to share the Ovacome information about recurrence ovacome.org.uk/recurrence and our factsheet on treatments for relapsed ovarian cancer ovacome.org.uk/treatments-f..., in case this may be of interest to you or your sister.

Ovacome is here to support anyone affected by an ovarian cancer diagnosis, including family and friends. On the last Tuesday of each month between 5-7pm, we run a virtual support group for friends and family, which provides a safe space to ask questions about supporting someone with ovarian cancer, meet others in similar circumstances and share your experiences. More information about this group, as well as details on signing up, are available on our website here: ovacome.org.uk/family-and-f....

If you would like to discuss any of this further with a member of the Ovacome support team, there are a range of ways to get in touch. You can contact us directly through this forum, via our Support Line on 0800 008 7054 or 07503 682311, by email at [e-mail] or via the Instant Chat function on our website. We are also available to talk by booking an individual video call if that may work better for you. All our services are available Monday – Friday, 10am – 5pm.

Best wishes

Annie

Ovacome Support