Goblet cell adenocarcinoma found in debulking for OC, desperately looking for someone who knows about this condition

[LouieB123]

Morning all, gosh sorry for another post so soon after my last- so mum had a debulk on 10th June, and they tested all organs / tissues removed. There was a nodule on appendix so they removed that too- turns out she’s been battling TWO cancers, both of which were present in her reproductive organs (the goblet one not as much as the OC which is a Serous). After speaking with Macmillan yesterday and finding out the name, it turns out this is an incredibly rare cancer of the appendix, even Macmillan nurse didn’t know a thing about it. And it’s an aggressive one. I’m just in disbelief- there’s hardly any information even online about it! Macmillan nurse also knew very little. What I have read doesn’t sound good… so so worried about Mum, not told her how rare this is yet. Not sure what benefit that will bring and sure new consultant will tell her this when she gets to see them. I imagine this is a real long shot as it’s so so rare… but has anyone suffered this type of cancer? Thanks for taking the time to read…

Laura xx

[OvacomeSupport Partner My Ovacome Team]

Hi Laura

Following on from your previous post, I am very sorry to hear of your Mum’s confirmed new diagnosis and the uncertainty this has instigated for her and your family.

As you mention, goblet cell carcinoma is a very rare cancer and is not an area that Ovacome specialises in. However, our information manager at Ovacome has shared this website with me which I hope may be helpful as you process this news: rarediseases.org/rare-disea...

I hope that your Mum is given an appointment with her new consultant promptly and this brings clarity to the questions you have.

Best wishes

Annie

Ovacome Support

[LouieB123 in reply to OvacomeSupport]

Thanks Annie.

[Caro1958 in reply to LouieB123]

Hi Laura, Hope your mum is going on ok. I have only just read you question regarding GCC. I was diagnosed with this cancer after an appendectomy in September 2018 at the age of 59. I was referred to Basingstoke Peritoneal Malignancy centre as they are one of only 2 hospitals in England experienced in this cancer. I had a CRS (debulking of ovaries, Fallopian tubes, omentum, right hand colon and belly button removal) with heated chemotherapy washout. Sounds horrendous but was looked after by NHS brilliantly spent Just over 2 Weeks in hospital and 3 months off work. Now fully recovered and checked annually with blood tests and scans - so far all good and no repercussions. Doesnt restrict me at all. Was told that ovarian cancer quite often starts with this cancer in appendix and spreads to the ovaries. It is a curable cancer and certainly was in my case. Hope this gives you more confidence. Any questions Of my experience I will help if I canRegards

Caroline

[LouieB123 in reply to Caro1958]

Hi Caroline,

Thank you so so much for the reply, this appendix cancer has been causing so much uncertainty and anxiety for us, even until this week when waiting for further results from The Christie.

Firstly I just wanted to say that I’m so pleased to hear that you’re doing so well, that’s incredible ❤️

So mum was diagnosed with stage 3c OC in February, she was incredibly unwell. She had three rounds of chemo followed by a major debulk where they took cervix, ovaries, most of omentum, appendix etc, then three more rounds of chemo. It wasn’t until we had the results after surgery that they found out that she actually had two completely separate primary cancers.. OC serrous and appendix GCC. We were shocked to our core.

So as it stands now she is doing really well and scan clear aside from one small nodule which may or may not be anything sinister. She’s due to start targeted therapy this Saturday for the OC to keep it away.. but I’m still so worried and confused about the appendix cancer. The appendix team didn’t get back to us for weeks to tell us if they wanted to intervene with any treatment themselves, and whilst mum had a debulk it wasn’t for appendix cancer (as they didn’t know about that cancer then) so surgery will have been slightly different to yours and she didn’t have the HIPEC washout..! Every single case I’ve heard of for GCC has had that, so I’m not sure what that means? Probably questions / concerns you can’t answer but it’s just so good to chat to someone with experience anyhow.

Appendix team have said this week they’re happy for OC team to go ahead with targeted therapy and they’ll just review her in 3 months.. what a time.

Laura xx