Feeling nervous

[verityann]

Hi I'm Kate,

I have recently been diagnosed with OC following non urgent hysterectomy for ovarian cyst and endometriosis which was thought to be non suspicious. It is stage 1c and CT was normal so that's reassuring. I have appointment today with gynae to discuss further surgery. It is now 12 weeks since hysterectomy and i feel more anxious as the weeks go on. I have been told my surgery won't be until the end of September. I just want to get on with it now. I just wanted to say Hi you all seem so supportive. Im sure I will have lots of questions as my journey continues x

[Lyndy2]

Hello Kate! Wow, I think in the greater scheme of things you have been really lucky! 1c has a good prognosis but as OC can be a little devil for coming back, I would suggest you go with whatever they suggest for follow up treatment…might as well do it now for a belt and braces. xx

[verityann in reply to Lyndy2]

Thank you for your reply. Yes I know what you mean stage 1 is the best I could have hoped for in a bad situation. I will be having surgery and chemo to give myself the best chance. Sending best wishes to you xx

[delia2]

Hi Kate. I’m sorry about your news but it is amazing to get a stage 1 diagnosis. Try to enjoy the time before the next surgery. Indulge yourself! Feel free to ask questions or vent your feelings here. Xx

[verityann in reply to delia2]

Thank you I certainly will. Sending best wishes your way xx

[SarahBa]

Hi Kate, yes do please come back here if you have any other questions.

I had my hysterectomy in October last year and was stage 1c2 (the tumour ruptured during surgery too). As my cyst looked suspicious from my scans they did think it could be ovarian cancer but couldn't be sure until I had my surgery .

Due to my tumour rupturing the 'belt and braces' approach they recommended for me was to have chemo (single agent carboplatin once every three weeks). For me this was highly manageable and thankfully you don't lose your hair with carboplatin (I know I shouldn't be bothered about something like that in the whole scheme of things). If you decide to have chemo do come back here as we can provide you with helpful tips.

If I were you I'd ask for a copy of your pathology/histology report. I presume you haven't yet been told what type of ovarian cancer it was? I'm wondering if it might be endometrioid epithelial ovarian cancer as there is a connection between that sub-type and endometriosis. I have endometrioid epithelial ovarian cancer but never suffered from endometriosis but a small amount of endometriosis was found when they did my hysterectomy.

The wealth of knowledge and support from the many helpful women on here is amazing so you will never feel alone with what you are going through xx

[verityann in reply to SarahBa]

Thank you for your reply. I hope you are well and fully recovered . Your story sounds very similar to mine. I was told it was also endometrioid OC. I have my completion surgery booked for 14th September which I am really pleased about. Chemo will follow 4-5 weeks after surgery. Once I was diagnosed I just wanted to get on with it. The waiting around is the worst xx

[SarahBa in reply to verityann]

Yes, I feel much better now thank you. I'm not sure I would ever describe myself as fully recovered as there is always the possibility of recurrence however I am NED. I had my first quarterly check up on Friday 26th August and everything was fine which I was really pleased to hear and my CA125 was 9.

Ahead of you beginning your chemo you may wish to buy some polo mints and stool softeners. I chose not to take the anti-sickness tablets as they gave me really bad constipation and instead just took a polo mint.

[verityann in reply to SarahBa]

That's fabulous news. Thank you for the tip, I suffered really bad with constipation after my hysterectomy x

[SarahBa in reply to verityann]

Also one more tip before I forget. I had my biggest 'reaction' if I could even call it that to my first chemo treatment. I had mild tingling in my hands and feet that evening. It's called peripheral neuropathy but it went after half an hour and I never suffered from it again. Everyone is different but I think because the carboplatin was new to me my body obviously had that little reaction to it. The point I'm trying to make is that after your first treatment both your oncologist and the nurses at your hospital will ask you how you're finding it. For me I had no issues and they never had to reduce my dose. All I'd say is give it at least two treatments before asking them to reduce the dose (if at all) as you'll probably find after the second treatment your body is more used to it. Of course I will caveat this as we're all different but that was definitely my experience. I hope it all goes very well for you x

[Sashay2020]

Welcome, Kate. I’m sorry to hear you have OC, but am glad it was discovered early and that you found the Ovacome site. Please let us know how you get on. Best wishes from Louisiana,

Sashay

[verityann in reply to Sashay2020]

Thank you, I certainly will. I hope you are doing well with your current treatment. Sending best wishes xx