Hi Last June I found out I had a reoccurrence of low grade OC after 20 years! Uber pecked to say the least! Staged at Roughly 3c (my consultant says they don’t usually stage a reoccurrence)I am about to finish Avastin. I had 18 cycles after chemo and huge debaulking surgery. Unfortunately not all the cancer was removed so small bits remain.
So I wondered what next it seems I’ll be on a wait and see possibly with letrezole.
I’d really like to know what the plan was for anyone else in my position.
How often was your monitoring?
How often did you have CT scans?
Where would you recommend a 2nd opinion ?
Thanks lovely people x x
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Jonich
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Hi Jonich, really sorry to hear about your recurrence 🙁 - but well done on having a 20year remission. I am in a different position to yourself but just wanted to say that I am thinking of you and wishing you all the very best for your treatment and monitoring. A second opinion never hurts, IMO. With very best wishes, take care, Mel x.
Hello Jonich, how devastating to get a recurrence and yet how wonderful to have had this length of remission. My warmest wishes to you and your family.
Monitoring: I'm at 5 years since finishing second-line chemo for clear cell carcinoma and my CA125 was tested every 3 months until just over a year ago and since it is spreading out to almost 6 months. The last reading 7 weeks ago, using a new lab and different equipment, showed a rise from a steady 8 to 15. Because I'll be moving home in the new year, well away from where I live now, another reading will be done at 3 months to see if I just have a new benchmark or its become active again.
Second opinion: I'm sure taking a second opinion for the treatment of my recurrence in Feb 2013 is why I'm still here. I was operated on at Queen Charlottes by Prof Christina Fotopoulou and team and returned to Addenbrookes oncologist for chemo. Ovacome's Support Manager, Anna, maybe able to guide you - freephone helpline 0800 008 7054.
Hi Jonich, so sorry you have to go through this again after 20 years. My mum is also low grade 3c, but for now not operable. She had 6 cycles of carboplatin/paclitaxel/avastin, which only reduced it a bit, so will continue on avastin (every 3 weeks) until progression or enough response for surgery, hoping it keeps it stable at least. Surgeon will request a PET scan as well, to see if all that CT shows is active tumor, and then re-evaluate. I guess she will have scans after 3 cycles, like she had until now. We will go for a second opinion as well, it can do no harm. Best wishes, Sara.
No wonder you are peed off about this after 20 years. What a magnificent NED time. Always worth a second opinion. It will give either reassurance or other options to think of. Both worth having.
Hi Jonich. To suffer a recurrence after 20 years is quite the whammy. Grats on making it through treatment once again.
My stage 3 borderline/low grade OC came back after about 2 years as low grade in my pelvic lymph nodes in Jan 2018. A laparotomy followed (which removed, once again, all visible cancer) ; then I had a choice of sorts: Watch and wait or chemo. Wasn't offered Letrozole at that point due to missing alignment with the German OC treatment guideline. So... 6x carb/tax chemo (plus avastin) it was, to satisfy the guideline. My ca125 remains still higher than normal at around 80-90 which is alright'ish, as long as it doesn't suddenly jump up.
I'm now on both three weekly avastin infusions and daily letrozole, plus quarterly ca125 checks and trans. vag. ultrasound exams. Plus daily B vitamins and alpha lipoic acid in a valiant attempt to reduce the chemo induced neuropathy pain in my feet.
My onc says I could ask for a big scan anytime, but think I will relax the schedule a bit in that regard (maybe once a year?) , since my ca125 seems to be a reliable indicator of brewing trouble.
Recently I added Ramipril (sp?) meds to battle the raised blood pressure (tnx avastin), plus adding a daily 20mg pantoprazole and 75g aspirin dose of my own volition.
What are you considering, in terms of going forward? Are you thinking of taking letrozole? Might definitely be worth a second opinion.
Hoping for a long chemo/trouble free time for you and me both :). All the best. Maus.
Hi Mays I am thinking of letrozole as at least it will feel like I am doing something but I do want to make an informed choice hence the second opinion. All the advice seems to be so vague around low grade. The CA 125 is a poor indicator for me which is a nuisance.. absolutely here’s to a long chemo/ trouble free time for us both! Jo x
This is hard to take but hopefully Avastin will have helped you, I hope and pray that this time round you will get another long break. A second opinion is always worth having so go with your gut feeling
I do believe that it is better to go to one of the major cancer centres for a second opinion- UCLH, Royal Marsden in London, Christies in Manchester and also Leeds I think. I went privately to the London Clinic - just to speed things up-and am now on a phase one trial at the UCLH Research Facility - back on the NHS.
I'm also a low grader. I concur with the information the ladies have given you. I myself had a 2nd surgery in London a year go as my own hospital wouldn't do it. So, my opinion is that it is always worthwhile getting a second opinion. I am now on 3 monthly CT scans with a following review. I have had my cells tested to find if my cells are oestrogen sensitive, which they are, and was then given Letrozole and, more recently, Aromasin.
Congratulations to you for doing so well over such a long period and I sincerely hope you can repeat this! xx
I guess it’s good to get a second opinion. How can a recurrence be staged?Did Dr leave any tissue behind during hysterectomy?Is it the Ovarian cancer back or is it a different cancer??its very rare for Stage 1 A to come back after so long??
Yes the omentum was removed but I have not idea if fluid was tested. It’s definitely the same ovarian cancer as I went back to the original hospital and they compared the path results. It’s a bit of a mystery as it stayed dorment for all that time through IVF and pregnancy too!
I believe it depends on the type of ov cancer. Ithink mucious types can come back after that long.No one is safe including the general public when it comes to any kind of disease.
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