Terratoma with a neuroendocrine tumour stage 1 3c, anybody

[Dottieparton22]

I think I might be clutching at straws here, anybody have anything similar. Apparently it's rare as hens teeth.I had a 5 kilo terratoma removed, it was on my left ovary. Also my appendix,left ovary and omentum along with 7 litres of fluid. No chemo as they were happy with everything.

This all happened last November. My last scan showed fluid in my stomach and where my omentum was, this was in March but they didn't tell me this until a month ago. There was talk of repeat scans and a biopsy but they've decided to wait until my next scan which is on the 24th of June. I still have a lot of pain under left rib and up and down my left side. General aches and pains and crazy fatigue someday.

I'm 49, so perimenopausal. My head is fried, just wondering if anyone out there has had a similar tumour.

Long one I know 😶😶 thanks in advance

[SopSinger]

You need to speak to your team for a real insight, however, it took about a year for all the aches and pains of surgery to subside for me. Have you asked for a second opinion from a major cancer centre? It's difficult when you have such a rare tumour, but there might be someone at the Royal Marsden in London who can access more specialised information.

[Dottieparton22 in reply to SopSinger]

Thanks so much for replying. I spoke to my nurse specialist on the phone yesterday so hopefully I'll get to talk to someone face to face when I go for my scan in two weeks. I'm in Ireland on the West Coast so travelling to Dublin for appointments, otherwise over the phone.

[SopSinger in reply to Dottieparton22]

Hope the nurse is helpful. Some of the Royal Marsden doctors do phone appointments too, so that might be an option. Hope you get some good news from the scan.

[bamboo89]

I was diagnosed with Stage 4b high grade serous AND non small cell neuroendocrine ovarian cancer back in late 2017. It was thought the high grade serous had mutated in some parts of me into the non small cell neuroendocrine, but that was just their theory. However it occurred, it took three months to get the final diagnosis because the neuroendocrine part was so rare that they kept sending it to different labs (including the Royal Marsden one) to make sure the result was accurate. I haven't yet come across anyone else who had this type of OC. I was treated in exactly the same way as if I didn't have neuroendocrine, so the same treatment as given for the high grade serous OC, so extensive debulking surgery followed by chemotherapy. I'm a bit confused by your description though - you say Stage 1, 3c - I could be wrong but don't understand how it can be Stage 1 and Stage 3C at the same time?

Miriam

[Dottieparton22 in reply to bamboo89]

Sorry it was a typo. Stage 1 c3 , got my letters jumbled. I'm still getting my head around all the letters and numbers.My terratoma had burst hence the c3, I only got it properly explained the other day. So your chemo went well, it's looking like I'll be going the same route.

It might sound strange but I'm glad to find someone who's been through a similar experience. Did they decide to do chemo straight away or wait for CT scans.

Thanks for your reply😊

[bamboo89 in reply to Dottieparton22]

Sorry, but Stage 1 c3 doesn't make it any clearer! Is it stage 1 or stage 3C would be my question.... Not sure what stage 1 c3 could mean.

Well here's my treatment story, though I'm not sure it will be relevant for you at your age - I am now 74, 67 at diagnosis and I did not have a teratoma. I had a PET scan 4 weeks after surgery which showed no evidence of disease, but they wanted me to have the usual adjuvant chemo 5 weeks after my surgery like almost everyone else does, but I decided to refuse it. Stage 4b is end stage, so having done some research, I decided I had little to gain having chemo at that point. I then had two years of relatively normal life, when I got a recurrence, at which point I had carboplatin. Another 2 years and it came back again (it never really went) and I had more chemo - should have been caelyx and carboplatin, but I had a bad reaction to caelyx so it was just carbo on its own., then onto Niraparib (a PARP inhibitor) for 7 months before it stopped working. Then last November, more treatment, this time carboplatin and gemcitibine, but my lungs couldn't tolerate the gemcitibine and it made my platelet count rise to ridiculous levels, so it was dropped after 3 sessions, and continued with just carbo again. As expected, it didn't work too well, so now they want me to have Paclitaxel every week instead for about 6 months, if it works. Which so far I have refused - It has only a 20% chance of working for me anyway and that's assuming I won't be allergic to it, l ike I am to so many drugs.

If your cancer is Stage 1, maybe that's why they didn't offer chemo, but if its stage 3C, its a mystery to me why they didn't do chemo straight away after surgery. I'm also not sure why they did not offer regular CT scans - I had them every 3 months to monitor things, but again, if you are Stage 1, perhaps that's why you haven't been monitored in such a way. Knowing whether you are Stage 1 or Stage 3 is pretty important... It may be your Staging has changed from 1 to 3c because your teratoma burst on removal. Did they test the teratoma to see if it was malignant or benign? I assume they must have done, since they removed your omentum.

[Marketlover in reply to Dottieparton22]

Hi sorry to hear you have had to join I also have been diagnosed with stage 1c3 mucinous ovarian cancer which is rare .My oncologist has not recommended chemotherapy as it doesn’t really respond .

Since listening to others here I’ve learned that a lot of other women have been in the same position as me so now I’m just waiting for my first 3 month scan which is quite daunting because of the cells which maybe still there when my mass ruptured what made it grade c3

I had a second opinion and was told the same so now I’m trying to stay positive and get on with life it’s still on my mind but I’ve got a lot of trust in the experts I think sometimes the worry is worst than the diagnosis and you have to stay positive xx

[Dottieparton22 in reply to Marketlover]

Thank you for replying. It makes me more hopeful knowing there are others in a similar situation keeping in good health 🙏 The sitting around waiting is driving me up the walls, just over a week and a half now until my scan.

I hope yours goes well 💓

[Marketlover in reply to Dottieparton22]

My scan is two weeks today I had hysterectomy end of March so fingers crossed

[Dottieparton22]

The c3 means the tumour was burst/ruptured. It was stage 1 but I was completely full of fluid. I looked 9 months pregnant before my surgery. The endocrine tumour was in the terratoma, it's all very confusing. The endocrine tumour was were the cancer was.They washed me out with dextrose to try and get everything out.I had surgery in late November, first post surgery scan in March. My next one is on the 24th.

Thanks for telling me your story, you've really been through the wars. So many different drugs for your body to have to handle.

I've asked them to write everything down for me so I can get a better understanding of it.

It was a crazy time in my life at the time so I wasn't really taking it all in.