Low grade Stage 3b serous carcinoma

[Jo2305]

Hi all I haven't posted in a while, I'm 43 and am on my 1st recurrence after 2.5 years clear and having my third chemo of carboplatin tomorrow. I read a recent letter yesterday on my pre chemo appointment and it says I have low grade serous carcinoma stage 3b and I know sounds silly but didn't exactly know what type I had before!

Is there anyone on here that has the same as me and has anyone an idea of the life expectancy prognosis. I had full debulking surgery almost 3 years ago along with 6 sessions of chemo (carboplatin) and got the all clear after a scan. This time they say it looks like grains of rice scattered on the scan so they won't operate but I can have chemo which I'm having at the moment. I know low grade is quite chemo resistant so after my chemo tomorrow I have a scan booked in next week to see whether it's working and if so I can carry on with the next three chemos and if not I have to have something else which I don't know what yet. This time I had a very bloated stomach and had 2.5 litres of ascites drained off and have had low down period like pain but ascites has stayed away and the the period pain went after a couple of weeks post my 1st treatment and right now (for 4 weeks now) I wouldn't know there was anything wrong with me which I'm hoping is a good sign before my scan next week?!!

Anyone with similar or the same out there and if so any advice or thoughts on prognosis?

Thanks

Jo xxx

[doodoolatrice]

Hi Jo, I had full debulking surgery three years and was diagnosed with borderline OC. Just over two years later I was experiencing discomfort and a laparoscopy and biopsies confirmed it had come back as low grade and like you it was scattered all over my andomen. I've just finished six sessions of Carboplatin and my scan is clear. I'm now taking a daily tablet of Letzarole which is an estrogen blocker as they believe mine is estrogen fed. I'm assuming yours isnt as from reading your previous posts you've been on HRT. I've been told that it's unlikely I will ever be cured but that they hope to maintain it and that's all I want to know., Kerry x

[Ladyone1 in reply to doodoolatrice]

Hi Kerry just reading your reply, I too was borderline stage 2c, that was in July 13, just lately though feeling very tired again, suffering with indesgestion and lower back ache and lower section of tummy slightly bloated, in back of mind we always worry it's coming back even though told highly unlikely and I was told my was most probably estrogen fed so was never put on HRT. I was never given chemo as told it wouldn't sweep anything up. Am I silly to panic as feel daft going to doctors incase it's just simple indesgestion x

[doodoolatrice in reply to Ladyone1]

Hi, Go and get it checked out, it may be nothing but it's obviously worrying you and no you're not being daft. let me know how you get on xx

[Lily-Anne]

Prognosis is the scary part. I've had 3 years clear as stage 1C but it seems it's back. I'm worried about prognosis too, my cancer is grade 1 serous and grade 3 clear cell, and the only things I've been able to find is that clear cell is the worst scenario, so serous therefore must have the better prognosis. Because low grade is slower growing the chemo doesn't hit as hard but, and I'm no expert, that must mean the remission times are longer. I hope it works out well for you.

LA xx

[Renavf in reply to Lily-Anne]

Hi I was recently diagnosed with 1c clear cell carcinoma. Grateful it was caught in stage 1 but sucks that it's the more aggressive type. I had a total hysterectomy and start chemo first week of October. A little nervous about chemo. How wAs your experience

[LittleSan in reply to Renavf]

Hi Renavf.

Everybody is different in their response and side effects. Generally most people feel okay for the first two days after chemo because of the steroids and anti-sickness meds. Be careful not to take the second dose of steroids too late in the day or you'll be wide awake in the night. On day 3 after chemo you can feel pretty grotty - nauseous, aching and fatigued. Gradually this usually eases during the three weeks until your next treatment. I found being prone infection really restrictive but it's all very manageable really.

You'll be given lots of leaflets on how you may feel and what to expect. Remember everyone is different.

Take care. Hope your treatment goes well.

Ps. It's useful to start your own post rather than post on a reply to others. That way it will be seen by more people and it won't clog up other people's thread.

[Renavf in reply to LittleSan]

Thanks so much LittleSan. So grateful that I found this community.

[Aroha]

Hi I'm low grade 3b. Was DX March 2015, had surgery and then chemo which my cancer responded to. I can't say about prognosis as every case unique and there is not much known about low grade. Dr Gershenson from MD Anderson, Texas, seems to be the man on research for this rare form of ovarian cancer. Generally it is thought to ve slow growing, has a slightly longer survival rate but doesn't respond well to chemo, bit if a double edged sword. Private message me if you want to talk in the future. Hang in there

[Mayamazarello in reply to Aroha]

Hello Aroha ..I have been diagnosed with low grade serous carcinoma stage 2c .am desperately looking for a good doctor who can advise me what needs to be done next can you please help me ? Thanks maya

[Aroha in reply to Mayamazarello]

Hi I've only just seen your message sorry as I don't go on the site very often. I'm under Dr Banneegee at the Royal Marsden and then have a trail called LOGS for low grade. You might already had heard of it as in 4 / 5 other hospitals. I'm not sure who specialises in low grade in UK but the Marsden have been great so far. How are thing going with you? X

[Jo2305]

I'm having my third chemo today so had bloods taken on Monday, got my results yesterday and good news is that my CA125 has gone down to 14 after only two sessions as well as being symptom free makes me very hopeful it's working. It was 195 on diagnosis. Fingers crossed. Scan next Wednesday and a week in Spain booked for Saturday 3rd to celebrate my husbands 40th birthday so I'm really excited about that!!! Xx

[Jo2305]

Thanks for the replies, it's a tough battle isn't it xxx

[maz54 in reply to Jo2305]

Haha jo - ain't that the truth! !! xx

[Caro25]

Hi Jo, I have a similar story to you. I was diagnosed July 2012 Stage 1V high grade serous. I had carbo-taxol chemo then full de-bulking in January 2013 then 2 more chemo and was told no evidence of disease left. Two glorious free years then had a few vague symptoms and a scan showed lots of little bits in pelvic area. I now have period like pains though otherwise well, and like you enjoying walking my lovely whippet. I'm waiting for biopsy and oncology appt but treatment probably more chemo.

My Macmillan nurse advised to think of it as a chronic disease, that recurs but can be treated, and I find that helps. Though of course still have terrors!

There are a lot of people having treatment on and off for many years, and hopefully one day, there will be something to get rid of it completely. Hoping to keep going until then!

Lots of love and hugs xxxxx

[welshdoll]

I was diagnosed Aug 2014 with Low grade stage 3b, age 45 and was told high chance of reoccurance as low grade doesn't respond as well as high x

[Jo2305 in reply to welshdoll]

Hi Welsh doll, I received the all clear on 22nd Dec last year and am currently still well with a ca125 level of 7. My December 3 month appt will be my year so fingers crossed for that. I am working full time and feel good (touch wood). My ca125 was 195 prior to chemo last year and after 6 sessions it was 6 so I responded well and just had carboplatin same as first time. I had the all clear in march 2013 and recurred on 29th July 2015 and was more of a shock than first time I think! Onwards and upwards! Xx