Hopeful!

[Jannibags]

Hi everyone! I was diagnosed late 2019. Had full hysterectomy and, after 12 months on 3 monthly screening, now on 6 monthly. CA125 was down to 5 last time. Was pleased at first but now starting to get twitchy as 6 months seems so long! Just keeping fingers crossed I stay ok!

[Mammi]

Hi Jannibags,you don’t say what stage /grade you are but I suspect early stage as you don’t mention chemo. I was diagnosed same time as you, &still being seen 3monthly after finishing chemo last may! Even that seems a long wait so I can imagine when I have to wait 6 months 😱sounds like things are going the right way for you & consultants must be happy to let you go 6months. Don’t know about you but I am suspicious of any little twinge I get but don’t want to spend time worrying so work hard to be positive & enjoy life even in these very strange times.Just the absent family cuddles would help 🤗Take care & keep busy. Dee x

[Jannibags in reply to Mammi]

Hi Dee! Yes, it was early, I had a low grade serous 1c1! Yes, every little twinge!😨 Suppose we might lighten up as time goes on and, hopefully, stay well. As you say, strange times and suppose maybe it's harder not to dwell on stuff! Pleased to hear you've also progressed to 3 monthly screening, hope you get to 6 monthly soon too (even though it's scary. What stage/grade were you? You take care too! xx

[Mammi in reply to Jannibags]

1C3High grade.Had a scary 16cm tumour! Keep being told that I’m so lucky as very few are found in stage 1 but I don’t really feel lucky 🤔Are you in the Uk? I shall follow your progress 👍xx

[Jannibags in reply to Mammi]

Yes, in the uk, we can follow each other's progress! Not sure of the measurements but I lost 1 stone in one hit! 😱

[Mammi in reply to Jannibags]

Me too but afraid lockdown is seeing some creeping back 😆

[Jannibags in reply to Mammi]

We must try to stay positive! Whereabouts in the uk are you? I'm in North Manchester.

[Mammi in reply to Jannibags]

East Anglia,Suffolk! I’ll be happier when it warms up & can at least have a coffee in the garden ☀️

[Jannibags in reply to Mammi]

Absolutely! Or even go in a cafe!🤣My sister lives in Norfolk, near Cromer.

[Mammi in reply to Jannibags]

Cromer is lovely! .....dreams of holidays !

[Jannibags in reply to Mammi]

Yay!🤣

[triplets in reply to Jannibags]

Hi ladies....I was diagnosed in July 2016 stage 1c2. Had full hysterectomy and 6 cycles of chemo as I had a large cyst plus the tumour and the cyst ruptured minutes before surgery. So was advised to have chemo just to mop up any cells that may have been carried around in the fluid. At diagnosis my CA125 was 13, so initially was told not to worry but fortunately they were thorough. First year I had 3 monthly checks, one with the surgeon who checked me internally, one with the oncologist who did a blood test. I was then moved to 6 monthly which I am still on. It seems to come round so quickly. Of course now because of the pandemic all appointments have been telephone consultations which does worry me. My CA125 since treatment in 2016 has remained stable at 8. I have been told that if I remain well I will be discharged next time I see the surgeon which should be February 2022. I still panic at times, it’s such a scary experience but know I have been lucky. Yes I long like you to just be able to sit in the garden in some warmth, lockdown in winter is no fun. We love holidays in Norfolk and usually go to Wroxham once a year . Keep safe, keep well. Oh I live in Deal by the sea! x

[Jannibags in reply to triplets]

Wroxham! So many happy memories. Roy's are on every corner!🤣 Pleased you are doing well and hope you get to Wroxham this year. I hope to visit there if I get my Norfolk holiday in Overstrand this time!

[Mammi in reply to triplets]

Must be a strange feeling to be discharged after the five years but it is proof that youve beaten the odds & once seen never forgotten so if concerned they will always have you back! Looking back at your profile your life has certainly been a challenge( one strong lady!) but triplets wow that’s some bonus 🥰Take careX

[mary1111 in reply to Jannibags]

I had low grade 3c ovarian in 2012. I did not have any treatment apart from full hysterectomy as it wasn’t an estrogen positive cancer and also low grade so I refused chemo which was totally accepted by my oncologist. I have had no recurrence and my CA125 stays at around 5. I was also worried about every twinge for the first few years.

[Jannibags in reply to mary1111]

Hi Mary! That's so encouraging and I'm so pleased you're still well. My CA125 was 5 at my last screening and 6 at the previous ones. So I've been stable for just over a year now. But we never relax do we?🥵

[Mammi in reply to mary1111]

Great to hear that your doing so well Mary.My ca125 is stuck on 8 🙏🏻Same as Jannibags, stable for 1yr. So you are our inspiration🤗

[purfekt10]

I spoke with my oncologist and we decided that I will have a CA 125 test every 3 months and will see him every 6 months.

[Jannibags in reply to purfekt10]

👍😘

[Eleybelly]

Hi ladies, Had to reply as your posts resonate so much. I was diagnosed with low grade serous 1b Jan 20 with full surgery last Feb. I see the surgeon every 3 mnths and one CT last Aug. I was expecting a further scan in Jan but despite some symptoms he said not till April or even Aug as "too many scans can be harmful" How often do you ladies get scanned and do you have CT's? My CA125 has been 7 throughout so I feel a scan is the only way anything will be picked up despite me advising of back ache, pelvic aches and constipation - all of which my surgeon doesn't seem concerned with.

Twitchy is exactly how I feel too, constant worry of recurrence.

Smiling at the Norfolk refs - I too love the area and holiday in Overstrand and Cromer

Kate x

[Mammi in reply to Eleybelly]

Yes Kate mine have been CTs but only before & after surgery & end of chemo last May.I too mentioned backache, side stitch & constipation but consultant said these were nothing to worry about & most likely from the surgery which we should appreciate is massive! My CA125 stays at 8 🤞🏻&consultant stressed that CTs are in themselves dangerous & can awaken cancer cells so best used sparingly, I trust his opinion 🤗 concentrate on the thoughts of a holiday 🌴🌞🧘🏼‍♀️Xx Dee

[Jannibags in reply to Eleybelly]

Hi Kate, sorry you're feeling so twitchy but totally get it! I've turned into a proper hypochondriac but so scared of ignoring stuff, that's what got me in trouble in the first place! We just can't afford to sit on our laurels can we, but difficult to get the balance right between being vigilant and actually enjoying life! Particularly in these strange times. I haven't been having scans at all, I've had face to face (or, more accurately, face to fanny 🤭) with my consultant every 3 months. She has checked CA125 and done internal examinations each time. I think she's of the opinion that, it looks ok, feels ok, ca125 is ok and I'm not having any symptoms, so it's ok! What else can they do? We all know we could be growing something at any time but, can only rely on regular checks and being watchful of anything that doesn't seem right, and pray!🙏 And try the best we can to enjoy life! I know it's hard, but try not to worry, it's all very recent and understandable that you do!

[Mammi in reply to Jannibags]

Same I rarely visited the doctor pre C. Find it odd that I’ve never had an internal but a few CTs, must know what they’re looking for .Trouble is I think we all crave reassurance, lucky I have a very patient husband 😆xx

[Jannibags in reply to Mammi]

We've become a bit needy haven't we? But understandable and it's good that your husband is so supportive!

[Mommoo65]

It's great progress when we can move to an appt. every 6 months! I was diagnosed 3b Fallopian Tube cancer with mets to abdomen in 2015. CA125 was only 45! After 6 chemo treatments and debulking my CA125 hovered at 6-7 for almost 5 years so my oncologist said we could stop having that test. He pretty much thought it wasn't a good marker for me. Well, right at 5 years I recurred in an inguinal node! Large lump I neber knew was there.! I had to wait to get a CA125 because of Covid, but when I did it was 85!! For me that was huge! CT scan showed lump in node but nowhere else, thank God

So, when I felt secure going into a hospital during a pandemic I had surgery and radiation, and my CA125 is back at 6. AND we're back to every 3 month visits. 😒 I told him that CA125 was sneaky and he did admit even tho 85 isn't a shocking number, it did signal that the lump in my inguinal node was troublesome and we will continue them.

[Jannibags in reply to Mommoo65]

That CA125 was sneaky, but sounds like your oncologist is on the ball and you're doing well! Hang in there girl, you've got this!👍😁

[Mommoo65]

I told him I keep him on his toes! 😁

[Jannibags in reply to Mommoo65]

🤣 Well done you!