A question lovely ladies…

[Emmacrispins]

Hello lovely ladies.

Could anybody who’s ‘watched and waited’ a recurrence before starting treatment tell me how long it was before things started to change and treatment began?

I was close to three years from diagnosis when a recurrence was diagnosed. There was some uncertainty initially about whether it was a recurrence (three very small nodules), but MDT reviewed it and I was told last November that it is indeed a recurrence. I’ve had two scans since then and nothing has changed at all.

I would love to know other’s experience of watch and wait, how long was it before things changed and at what point did treatment start?

Weirdly I feel absolutely fine, more energy than I’ve every had I think ☺️ x.

[Lyndy]

Hi Emma

I had 2.5 years on watch and wait, wouldn’t have missed it for anything! Definitely wouldn’t rush into treatment another time x

[Emmacrispins in reply to Lyndy]

Wow Lyndy, that’s a long time! Great that you were able to be treatment free with no progression for so long. Was the cancer inactive during that time, or did it just grow slowly?

Thank you for sharing your experience xx

[Lizzieanne]

So far watch and wait for,17 months. Just had PET scan and will see oncologist beginning of June it has always been progressing but v slowly. Am in no rush to start chemo which my oncologist is happy with, have asked her to say yes think we should start more chemo.

[Emmacrispins in reply to Lizzieanne]

Great that you’ve had a good long stretch without treatment, you’ve done so well.

Good luck with your scan results, fingers crossed that your treatment free time continues xx

[Lizzieanne in reply to Emmacrispins]

Thank you

[Kaitlinsmum]

Hello, I was in very similar circumstances to you. About 2 yrs after my main treatment my bloods showed a slight rise in ca125 and ct scan showed cancer was on dome of my liver. Told to watch and wait . I asked for it to be removed by surgery straight away or to have chemo straight away cos i felt scared. Was told it wasnt the right time and that parp inhibitor was keeping it at bay and stopping it from growing.Had ct scans and chat to onc. every 3 months. My bloods were checked every month when I went to collect my Parp inhibitor. I felt quite well. Got a phone call after 9 months to say it was time to start treatment. There was a bit of a delay in getting started but I had 3 cycles. CT scan showed that it hadn't worked and cancer had now gone into my liver. I have tried 2 other types of drug and now have weekly chemo. If I could turn back time I would definitely have asked for a second opinion from a different hospital right at the beginning , before it entered the liver. You have to advocate for yourself. I wish you luck. Keep in touch xx

[Lizzieanne]

Meant to say I have blood tests and PETscan every three months and can get in touch any time if I feel something has changed

[Lizz49]

Hi Emma,

Just to share my experience as I was on watch and wait recently but in the end only for a short period of about two months. The reason I progressed to a secondary debulking instead of staying on watch and wait was because I had disease on the surface of my bowel and felt that my bowels were really slowing down…my oncologist said best to intervene if bowels are playing up, and as my cancer is low grade they proceeded with the surgery (they didn’t propose chemo for the low grade recurrence)

As well as this I suppose I was getting more symptoms, quite manageable but lots of gripey pains in my side, and I think mentally for me I couldn’t have continued doing nothing indefinitely. I was happier once a decision was made to operate and now that’s done I feel more relieved. I think every case is different and if you are feeling well with no real pain or symptoms and small nodules you could carry on with close monitoring.

I hope you decide on a plan that you’re comfortable with and sending you best wishes,

Liz Xx

[Emmacrispins in reply to Lizz49]

Hi Liz, thank you so much for your reply. I totally understand your thinking, I’ve felt the same about starting treatment. I’m torn between wanting to start treatment right now and leaving everything alone and getting on with life. I’m so pleased that you’re treatment has worked out well for you xx

[Leniko]

PLEASE stay up-to-date w checkups. I was diagnosed in 2008. Had chemo and hysterectomy. Reoccurence (OVCA tumors on psoas muscle) in 2014, 2019, 2022. Various treatments chemo, radiation, immunotherapy given. I’m still here and kickin’. Don’t stop getting follow ups after 5 years. So glad I insisted on annual CA125.

[Emmacrispins in reply to Leniko]

Thank you for your reply. I’m so pleased that you’re doing so well xx

[Kblaisel]

I went 2 years after surgery before I began chemo and just started back on chemo after 3 years. In between, I was on clinical trials, but no IV chemo. I don’t pay much attention to CA-125, and I don’t rush into treatment unless I develop symptoms that make me investigate via a scan.

[Emmacrispins in reply to Kblaisel]

That sounds like a very sensible outlook. Are you on a Parp now? xx

[Kblaisel]

Not on a Parp now. I was on Olaparib during the Dana Farber trial and on Niraparib during the University of Virginia trial.

[Lind58]

my mom has been on watch and wait since October. Wishing you the best ♥️

[Emmacrispins]

Thanks for your reply. Has your Mum’s cancer progressed at all since she’s been on watch and wait? I hope everything goes well for her in the future x

[Realistic]

I had de bulking op in 2019 for grade 3 serious Ovarian cancer then on watch & wait for nearly 2 years with lymph node that gradually got bigger it was decided to do biopsy in 2019 when l woke up they,d taken nodule out completely and it was cancerous there not always apprantley but thankfully lve been NED ever since after 6 months chemo which was pretty tough but soon recovered. Im just waiting to see Surgeon for complicated hernia had 5 appointments cancelled so far pretty fed up about it but no point in moaning fingers crossed see him tomorrow at MRl 6th time lucky. Take care stay positive love & best wishes SheilaFxxx