Results day not as good as I'd hoped - Low grade serous

[Jo2305]

Hi all

After 24 weeks of weekly taxol 3rd line and feeling really well throughout results day on Monday.

Consultant said he was pleased generally with the scan although there are still some small bits left and a few have calcified. My CA125 has come down to 29 from 100 so within the normal range although my normal has been about 6 or 7 in the past. I have got fluid on the liver which hasn't shrunk throughout treatment so he wants to speak to a liver specialist to see whether they suggest surgery to remove, (in which case he said it might be worth removing some of the remaining bits at the same time) or just draining it or leaving it as I can't feel it at all but he showed it to me on the scan and it looks quite big. Apparently they won't come back to him for 2 - 3 weeks probably so I'm waiting again to get another appointment with him when he's spoken with them.

So upset as was so hoping for NED (had that the last 2 times) although I know low grade is quite chemo resistant. Feeling well but scared .....

5am lying awake listening to the thunder and lightning.

Jo Xx

[Jonich]

I am awake too... I was told on Monday that I have a reoccurrence of ovarian cancer spread in the abdomen and attached to bowel. I last had OC 20 years ago which was caught at stage 1a so it's been a big shock it's come back after all this time. It's low grade and I see the chemo doc tomorrow to discuss the plan. I know that low grade doesn't respond to chemo that well so it's all rather daunting....

Jo

[Jo2305 in reply to Jonich]

Wow 20 years is amazing but I can imagine it was a huge shock. I was diagnosed in 2012 and the 2 lots of chemo I had before this brought me to NED and this one has shrunk to the point that my CA125 levels are normal so there is hope. All the best to you xx

[Jonich in reply to Jo2305]

Thank you.. being a bit new can I ask what NED means?? It's so good to hear your CA125 is normal. All the best to you too Jo x x

[Jo2305 in reply to Jonich]

NED means 'no evidence of disease'. Basically they can't see any cancer on the scan results although often with this hideous disease there are microscopic bits floating around which are not visible even on the scan.

[Jonich in reply to Jo2305]

Thanks that makes sense. I currently have extensive disease .. so I'm aiming now to get to NED. 😉. At least I have youngish age on my side according to the doc so that's a bonus...mind you I was 32 last time.. totally right description it's a hideous disease for sure!! X

[Jo2305 in reply to Jonich]

I was 40 when diagnosed now 45 and generally fit and healthy so I'm hoping this will help xx

[Jonich in reply to Jo2305]

I am sure it will help! I will keep everything crossed for you! X

[Jo2305 in reply to Jonich]

And the same to you keep us posted xx

[thomas62 in reply to Jo2305]

HI Jo,

Do you know what calcification means? I'm sure your Oncologist will be doing the best for you. Perhaps some nice treats for yourself in this interim period!

Gwen x

[ScardyCat40 in reply to thomas62]

It’s quite common with LGSC and often means old disease

[thesilent1 in reply to Jonich]

Hi Jo, what a shock for you, 20 years free of the disease to learn that its back! Just wanted to say Hi, and welcome to our club, the one that none of us really wanted to be a member of. Ann xx

[Jonich in reply to thesilent1]

Thanks Ann for the welcome! You are sooo right I it's not s club that I'd planned to revisit! This forum didn't exist last time round so it's good to be amongst fellow members.. jo x x

[thesilent1 in reply to Jonich]

Yes, we are all very supportive on this site and you know that old saying, its good to talk. xx

[Lily-Anne in reply to Jonich]

Hi

That's really good, 20 years. They may offer you surgery, and if they don't I would ask for another opinion before committing to anything. My one wish is that I had thought more carefully at the beginning about what I wanted rather than jumping on the treadmill.

Welcome to the party

LA xx

[Nancy222 in reply to Lily-Anne]

Hi Lily-Anne,

I know this is an old post, but do you recall what you meant when you said you wished you had thought more carefully at the beginning about what you wanted rather than jumping on the treadmill? I'm intrigued. Many thanks. Nancy

[thesilent1]

Hi Jo, I'm sorry you didn't get the results you'd hoped for. I know what that's like as I didn't get back to NED after second line treatment. I know its hard waiting but your oncologist seems to be doing what he can for you. Some nice days oiut while your waiting to hear might help you forget, even for a little while. Take care. Ann xx

[Jo2305 in reply to thesilent1]

Thanks Ann, all the best to you too xx

[ScardyCat40]

Hey Jo don't be scared I think you have had a good response. I am also low grade serous and I have never been NED I have always had some low volume residual disease but I have remained stable and not required treatment for about a year between treatments

Are they going to drain the fluid around your liver?

[Jo2305 in reply to ScardyCat40]

My consultant is going to speak with the liver surgeons to see the best way forward for the cyst so could mean drain/op or do nothing for now I really don't know until I hear, it's going to be 2-3 weeks according to my consultant so it's just another waiting game and then I'll get an appt to go back in and see him.

Thank you for your response it's made me feel a bit better xxx

[Lily-Anne]

I have to say 29 is great. I know I won't be NED this time as I have been before, however low grade serous has a massive advantage. It can stop growing on it's own and sleep, with a little muddle of cells every now and then. NED is not active, not always absent, so try not to worry it can be as good as before.

I thought the storm was great, while sipping on a bottle of Gaviscon lol

LA xx

[Jo2305 in reply to Lily-Anne]

Ah thank you Lily-Anne you've made me feel a bit better regarding that, just have to wait and see what the liver surgeons come back with. Good luck with your treatment and I hope it knocks it back again!

Xxx

[Orsolini]

Jo - I am so sorry. As you know I can well understand having just slogged through assorted chemo regimes for nothing. I now realise that this disease is always about waiting - waiting for the next appointment, waiting for treatment results. Don't be scared. Feeling well is a good thing! - Nicola xxx ps. I also take solace in Lily-Ann's post.

[minard]

Hi Jo - I hope you're feeling a little better today. Sitting up awake at night is always the absolute pits isn't it? I too have had a chemo treatment that didn't have the desired effect so can well relate to your disappointment - particularly if you'd been feeling well.

If I were you, I'd try to use the waiting time as positively as possible. After all, none of us really knows what's ahead of us - so get out there in the summer sunshine (if it's still with you?) and make the most of feeling well right now. All the best x

[Wigan2]

As a low grader myself I think it's really positive that your ca125 has come down and you have shrinkage. Hopefully you will get plenty of time between treatment as slow growing.

[koffeekat99]

Hi Jo2305

I'm a fellow low grader (3b). I've never been NED as I have some tumours in awkward places which couldn't be removed with the others in surgery. I've been wandering around with these tumours for 2.5 years (and however long I had them before diagnosis too) with no treatment. I decided on 'watch and wait' on doc's advice, with a view to being able to have chemo at a later date. Originally I thought not being NED would mean that I'd always have some kind of cancer symptoms or constantly be aware of it, but that hasn't been the case.

Whilst being NED would most certainly be preferable to knowing I've got tumours it hasn't stopped me being able to do things in life.

Do you know what the calcification of the tumours actually means? I was just trying to look it up and it sounds like it's to do with tumours being older. However, it's a bit unclear as to what effect calcification has on how the tumour behaves, i.e. is it good or bad, does it slow down or stop a tumour being able to grow, etc? There is a study to suggest that it's more likely to happen in low grade.

Hope you managed to get some sleep last night.

X

[Jo2305 in reply to koffeekat99]

Hi Katfish

I was diagnosed in October 2012 with stage 3b low grade serous and funnily enough after 'the op' with everything removed he still suggested chemo was a good thing so I had 6 rounds of carboplatin and didn't recur until July 2015 when I had another 6 rounds of same but only lasted till Jan 17 this time so only a year after finishing chemo. Isn't it funny how different consultants have completely different opinions. Now this time after 3rd line I have small bits remaining and because I've always had chemo in the past and I've just finished I was worried it might grow back fairly quickly as still visible but judging on your post hopefully not. Perhaps he'll just watch me this time. Just waiting to see what to do about the fluid attached to my liver.

As I was quite upset in my meeting I didn't ask him what calcification actually means and what the calcified tumour would do so none the wiser, I'll have to wait till my appt in a few weeks and ask him - again I couldn't find much on the internet.

I feel so well I've been on a couple of holidays this year so that has been nice. I am 45 now (40 when diagnosed) how old are you if you don't mind me asking?

Do you get your CA125 checked at appointments, if so do you know what it is? Like I said in my post it was 29 when chemo finished 2 weeks ago so in the normal range which should hopefully be a good thing !

Glad you're keeping well and all stable in your body

Xxx

[koffeekat99 in reply to Jo2305]

Hi Jo2305

I was also officially diagnosed when I was 40 (though I was very ill for most of the time that I was 39!). I am now 42.

It does seem possible that it depends on your consultant as to what advice you get about chemo. Although I believe that the advice I received was from the whole MDT rather than just from my oncologist on her own. I also spoke to the chemo specialist at length who spent a lot of time with me explaining the likely success rate of chemo with diagrams of the life cycle of cells, etc.

I don't think the team had dealt with many people with low grade OC at that point as I was given a rather grim prognosis initially that has not come to fruition, and seemingly is at odds with the prognosis that other low graders had received at other hospitals!! It did mean that I re-evaluated my decision of having no chemo based on their advice and limited experience, but then after going through it all again and looking at other people's experiences I have decided that it was the right thing for me. I will never truly know if it would have made a difference to me to have had chemo straight after surgery, so there's no point rehashing it all with 'what ifs'.

I can understand you not asking about calcification. I tend to write my list of questions before I go to my appointment so that I don't get distracted by anything else that is said.

I never get my CA125 checked. I don't know what it is at the moment, I know it was very high pre surgery but I can't remember exactly what it was (in the hundreds I think). I don't know what it was post surgery. That's not because I have my head buried in the sand. As I knew post surgery that I still have tumours I wasn't sure how helpful it would be to monitor my CA125. So I've decided to use the measure of how well I feel rather than anything else. Similarly the oncologist said that if I feel well then they wouldn't be that keen to start treatment with me anyway. I find that works for me, though I understand why people do monitor their CA125 regularly.

May I ask if you have experienced many symptoms of OC, either before you were diagnosed or each time before you have had treatment?

X

[ScardyCat40]

Hi Jo,

I was diagnosed with LGSC about 7 yrs ago. I have had 3 lines of treatment and never really been NED and CA125 is usually outside the normal range. However I have still managed to live a relatively normal life.

I hope you get some useful answers from the liver specialist.