Thanks to everyone for good wishes this morning. I don’t know about you but I can pretty much tell just what level of news I’m being given by the way my specialist greets me! Today I was greeted by a nurse who told me she was chaperoning, and there I had it the confirmation that my remission was at an end!
My specialist then went on to tell me he nearly called me last night to ask me to bring someone with me but thought it might freak me out, ‘yes’ I replied ‘I would have thought you were giving me three weeks to live!’
Anyway I’m now looking at second line treatment plans, they are having a MDT meeting a week Monday and I’ll see him the day after to find out what my options are.
Do any of you have any advice re the best course of action to offer optimal results long term? I’ve told him I’m open to surgery if it’s an option, however due to the spread it may not be. I’ve been in remission since December 2016 so that’s a positive, I’m high grade serous, negative gene thingy (can’t remember the name).
I’d appreciate any questions you think I should be asking, anything really, I’ve had a bit of time to get my head around things as I knew at the last scan 5 weeks ago that there were changes.
Really any advice appreciated from anyone who has been though a recurrence.
I’m sorry to hear your news, I haven’t had a re occurance yet, but if I was offered surgery to keep the b.....s at bay, I would always go for that and a mop up operation with chemo after.
I’m sure you will get better advice from the other ladies, but whatever your options I wish you all the best ,
Thank Carole, I think that’s definitely my view too, just based on what I’ve read so far. Thanks for replying, it’s really appreciated. It’s been a tough day so far, the support on here always keeps my spirits up. X
I’m sure it has been tough my lovely, I don’t know how I would cope second time round,but, it’s a case of having to isn’t it?.
There’s no other option, I have too much to do and too many people who need me. I’m sure that is the case for you also.
My attitude I think would be, Ive done it once, I can do it again, I’m a tough old bird when I need to be and we are both strong, we have come this far haven’t we?
So right! We get our heads around things first, I suppose because we know our own bodies best. I’ve hated telling others today, I feel like I’ve let them down somehow which is blinking ridiculous.
I love your attitude and yes I have totally whipped it once and will do again.
My son has been amazing but at 12 I suppose it doesn’t really land in the same way as an adult, it’s been a blessing. His view definitely is you’ve done it once you will do it again so I’m not worrying!
I am 10 weeks post second surgery and had 2 chemos now x for me i felt it was the best option. All cancer removed again and all biopsies (other than the main lump) were negative.
Its been harder this time as bowel involvement and thats my only symptom but its getting better each week and i would do it all again given the choice. This time i knew how to pace myself and without needing the hysterectomy bit i think its been slightly easier.
I can't think of any questions you could ask that aren't obvious, Lisa, but just send hugs and agree with others. You know you can do this as you've already proved it first time around ❤️️❤️️
Hi sorry that you are facing a recurrence, but you have been through this before and so kind of know what to expect! I myself have had 2 recurrences and I am quite well after being diagnosed in 2012 stage 4. I wish you well and really hope you can kick it's a.. again. Take care Pam xx
Pam that’s so reassuring, thank you for taking the time to post. There Such inspirational stories of long term survival on here, it gives me real hope that i’ll See my son out of school.
Hi Lisa, You have the right attitude I had my first recurrence 6 months arfter first line and I've been on chemo for the best part of over 3 years, my history is as soon as I go off chemo it starts up again. I've just finished my 5th line of treatment carbo/ caelyx.
So you can see there are option I hope when you have your meeting your team will come up with the best plain for you..take care Lorraine xx
Lisa I think we are only a a couple of months apart with first line I finished Oct 16, I am also having a recurrence and waiting to find out next steps. all in all it’s been 5 weeks since biopsy. Surgeon said he will wait to see what pet scan comes back with before a decision is made ref Surgery MDT meetings Friday mornings, not sure if they got pet scan results for Friday gone, as not heard anything yet.
I’ve just finished second line treatment (carbo/gem) and I wasn’t suitable for surgery because it was all little bits spread around and about - nothing substantial enough or restricted to a specific area to make it worthwhile.
The chemo has pretty much knocked it all back and my CA125 was comfortably in the ‘range’ by the end of treatment, but a little patch remains on my liver. Bit gutted about that, but am now on Avastin (private insurance) and will see if that helps.
Good luck with your options.
Vicki x
Hi Vicki,
That sounds very similar to me, I've said I'll do whatever but my surgeon did say it was more likely Chemo would be suitable because of the spread.
Sorry to hear about your Liver, I know don't have any in my lungs but forgot to ask about any other organs. My surgeon drip feeds bad news so maybe he's saving that for next time.
Would you have had Avastin if you did not have some remaining. Did you have to see a different oncologist or does yours do private work? My current guy doesn't do any private work, I'm worried that I'm being given the NHS line and not being told what the best chemo combo would be.
Looks like Florida is off for me, but my lovely friends are taking our son, which has taken a lot of the pressure off. I hope you have a fantastic time.
Hi Lisa. I recurred after 10 months remission last November. But I am waiting and watching because not symptomatic and only small spot showing on Pet/Catscan. No-one has mentioned surgery to me apart maybe a day surgery to remove spot from lymph node but its too small to find at present. I have always understood that if you recur more than 6 months past chemo, you go straight back on original chemo of carbo platinum and taxol. I notice in USA they sometimes add avastin during or after but not sure why. When I said I maybe didn't want taxol again, actually don't want either but not much choice, I guess, was suggested maybe carbo doxil (also known as caelyx). I looked it up and its says once a month rather than weekly but again, not sure. Didn't like side effects of doxil but some women said it was easier on them than carbo taxol. My oncologist suggested a clinical trial but I looked at it and feels too early on 1st recurrence and only up to 15% success rate for non genetics like me.
Anyhow, do ask lots of questions, pro's and cons and alternatives, cos though they will always know alot more, we do have some choice about what we choose! Sending hugs. Its really tough and disappointing when we recur, especially for 1st time but hang in there.
Thanks Tara108, yes it is blinking disappointing isn't it? I expect to be put on the same as before but I really want to understand Avastin and what it adds to the dynamic. I know there are limits in the UK NHS about when you can have it but want to understand why that is, is it benefit/oucome related or cost.
Like you at my last ct 5 weeks ago I didn't have a lot and was initially waiting until the end of April to rescan but my leg is really swollen so they re-scanned and it's a mass pressing on a vein so although there is not much what there is is having an impact. I do think it seems better to wait if possible from what I've read about overall effectiveness.
Hi Lisa. I to have just been given the news that its back. Not sure about you but I sort of new it was back. I had a scan in January showed a small amount on my liver and my ca125 has gone up to 200s. I saw the onc on Thurs and she has told me to wait as long as possible before we start chemo. I am having another scan in Apr. I hope I can make it that long already struggling with pain in abdomen and back. I like you have had to cancel a couple of holidays it's sh.t isn't it another summer out the game. I really know what your saying about asking questions but for some reason when I get in the room your mind drifts to another place. I hope you can easy time through this next battle ahead and can look forward to some good times.
Claire xxx
Ah Claire, I'm sure both of us have plenty of good times ahead. Timing sucks but then there never is a good time really, if I'm not ill for the summer it would be Christmas and with a 12 year old that still big on the list of important dates. I hope all goes well for you with your next round.
Hi Lisa. Really sorry you’re facing a recurrence. I was told I wasn’t suitable for surgery second time round and had taxol and carbo/cisplatin. When I had a second opinion, the surgeon said he would have recommended a combination of chemo and surgery. It’s now 14 months since I finished that chemo and the CT report received on Friday shows slight progression so probably more chemo later this year. Surgery may well have given me longer. Hope this helps. All the best Jo xx
Thanks Jo, did they tell you why you weren't suitable for surgery? My surgeon did say he may keep surgery in reserve for another time, I need to ask more questions but I'm rubbish on the day. Things just slip my mind, need to write a list.
I'm on my 5th recurrence and have a pretty normal life. I'm now on weekly Paclitaxel, without side effects apart from fatigue, which I solve by long hours asleep! Try to keep positive although the waiting is horrible, I know. Gina xx
Gosh Gina you are doing so well, I'm loving hearing stories like yours, you obviously have had to be extremely strong-minded to cope with the number of treatments you have. Just what I needed today, thank you. Take care xxx
Strong-minded yes but also extremely lucky as recurrences have all been in the pelvic region. That's good news apparently. I hope you also have a guardian angel - so keep positive and you'll get through it too xx
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