Hi,
Recently diagnosed with S3 Ovarian Cancer and have been given a choice of primary debulking surgery followed by 6 rounds of chemo or interval debulking with the surgery in the middle of 6 rounds. Worried that PDS is more risky/ radical although I’ve been told that it wouldn’t be.
Any advice/ experience most welcome!
Thanks
Hello, my experiences of surgery and chemo were in 2011 & 2013, here was no choice in 2011, just surgery followed by 6 rounds chemo and by 2013, the 'ingredients' in my situation dictated secondary surgery followed by the 6 chemo rounds again.
I am pretty sure there has been more research since, so I think I'd ring the Ovacome freephone helpline 0800 008 7054 and ask the team what information they have.
Warm wishes for whichever option you decide on.
Hello Bookclublover
I had interval debulking because I wasn’t eligible to have psd. I think the critical element is that they need to be able to get everything visible. If there’s any risk they can’t do this then it might be best to hold off.
You could ask for a second opinion from another surgeon? xx
I'm sure that each case is different, but here is my experience so far. I am also Stage 3 and my surgeon didn't give me a choice to have the surgery first, he says that the outcome will be better if I have some chemo first. I completely trust his opinion (my first reaction was could they please just "get it out"). A scan can only give so much information and I had a laparoscopy so he could see what he was dealing with.
I am a little bit surprised that they are asking you to make this decision - we are not the experts. I think you need to ask for more information on exactly what is there and what the different scenarios are likely to be - you need to be more informed to make this choice.
Yes, these are all the things I’m worried about. On the other hand, if I’m in the small percentage of patients for whom the 3 chemo rounds doesn’t shrink the disease, I could potentially in more trouble…
Where are you being treated? I’m in Glasgow area and the wait for surgery is awful- some women on Interval debulking end up having 6 rounds first because of surgical availability. Means that decisions on timing of surgery are determined by resources rather than any “plan”. Consequently many of the women here end up having the surgery done privately in England.
Hi. I’m sorry for your diagnosis. And having to face choices so huge.
I wasn’t given a choice. Although I suppose I could have questioned it, but I just did as I was told. Being totally ignorant of the process . The plan was ids but the half way scan revealed only a partial response and Onc didn’t want to risk surgery in case they couldn’t get it all, so she opted to complete the 6 rounds, which I’ve recently finished. I had my scan yesterday so just waiting on results now to see where we go from there.
Good luck whichever choice you make.
Bev x
HiI wasn't given a choice. Surgery first remove uterus omentum and appendix. A month to heal (over Xmas) and then a presurgery scan. The tumour had gone wild in that month and spread everywhere. A few factors may have contributed. I had 2 iron infusions in that month. Cancer likes iron. I was anaemic and perhaps just needed one dose. No one advised me to micro dose aspirin to prevent surgery trauma induced metastasis. 25 mg per day post op helps. I ate ALOT of sugar. It was Xmas time and I comfort ate. Avoid sugar completely post op. Even minimal fruit. By the time chemo started I had new 2aries everywhere including my chest.
The good news was that now the cancer was growing so fast it was very susceptible to chemo. It all disappeared after round 2 of 6 rounds of chemo. I am still well nearly 2 years later (although the cancer is back and growing slowly.) I have refused further chemo as long as I am well.
The advantage of surgery first is that you are stronger. The advantage of surgery later is that there may be less or none to remove. If the chemo does not work and needs to be changed, surgery later would be safer once chemo has been altered and is working.
Hi. I don’t think they would give you a choice unless they were confident they could remove everything up front. You should ask specifically for example whether a colostomy would be more likely if the surgery was first. Good luck! Xx
I agree that they should probably not give you a choice but that is the way medicine works now. I had interval debulking after 4 treatments. I also had a radical neck dissection because that's where my disease became at first apparent. I then follow with three rounds of chemo. That was 17 years ago stage 4 and I am still here to tell the story. Good luck with your decision. The problem is everyone reacts differently and no two cases are the same
Hi, all the research points to better outcome if you have 3 rounds of chemo, then debulking, then chemo again. Reason being that they have a better chance of removing all the visible signs of cancer
Hi - I was diagnosed as Stage IIIc, and was admitted 2 weeks later for laparoscopy, and debulking. Six weeks later, being offered chemotherapy with the disappointing advice that low grade serous ovarian cancer is highly resistant to chemotherapy. I had options, to take the severest form of chemo - Carbo-taxol, to just take Carboplatin or to do nothing... I opted for the first. 18 months later it was confirmed that the chemo had failed. Now, just having commenced Letrozole hormone therapy. It all having happened so fast, at the time I was still dazed and rather like a rabbit in headlights. In hindsight, knowing what I do now, I could have asked about trying Letrozole rather than chemotherapy as apparently it has been given as adjuvant 1st line treatment. A CT scan 6 weeks after surgery showed No Evidence of Disease, so possibly Letrozole would have been better than the more aggressive chemotherapy. This is, of course, my story. Your type may respond well to chemotherapy. I wish you all the best with your treatment. xxx
Hello, it’s very worrying to make decisions about surgery. My surgery for debunking was after 4 cycles of chemo, decided at their weekly multi discipline meeting of surgeons and my oncologist. My oncologist said the decision was to kill or greatly reduce the tumour first, this worked. There is a time line between chemo and surgery don’t let it go over 2 months, should be one for best benefit.
On recent recurrence spread I was offered another debulk surgery but declined as it was risky taking my oncologist advice to go with Chemotherapy as I responded well last time.
We’re all different and it’s a journey of discovering what works . Ask many questions re scan and what it means, your CA125 reading and don’t be put off, having surgery at the right time is important.
Good luck and best wishes x
Hi
I had three rounds of
Chemo(carbo platin taxol)
debulking then
Three more
Rounds of chemo
It’s really a decision based in many factors with your surgeon and oncologist
Mine made sense in 2020 get as much as you can with the chemo , go in take out what is visible, then more chemo to mop up anything left behind
Hope that helps
Hi Bookclublover,
Sorry you find yourself here and with this decision to make.
The ultimate goal of either surgery is to remove any visible cancer.
I think both offer the same in terms of PFS.
My Surgeon who is a a trained Ultra radical surgeon advised me to have surgery first but she was pretty confident from the imaging she could get all the cancer. She did say if I wanted to, I could do Chemo first and have interval surgery but I followed my gut and went with her advice.
My surgery was extensive but my body recovered really well. I started Chemo 6 weeks later.
It's a very individual decision, maybe speaking to your Nurse or the Ovacome support line may help?
I think there's pros and cons to both but I wasn't disappointed with my decision.
Good Luck 💙
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