Ned without debulking surgery

[Centriole]

Hello

I’m hoping everyone is doing well.

I’m not able to find a lot of information on those who are unable to have surgery.

Are there of any you out there who did not have surgery and have reached NED?

Thanks for any insight you can provide

[Nicky100]

Have they given you a reason for no surgery? Have you considered a second opinion? I was also told I could not have surgery- so found a second opinion and they told me that I COULD have surgery. This has saved my life so far. I can always send you the details.

Chemo can result in NED. Each person is very different, do what dorks in one, might not work in another and vice versa. Your body is unique and you are not a statistic.

There are some cases of people actually refusing surgery ( different course of action) and having very good results. Have you seen the website or read the book: RADICAL REMISSION- by Dr Kelly Grant? It’s superb. It is a wonderful book to read and very uplifting.

Here is the link to her website:

radicalremission.com

It’s chock full of properly researched stories of people in remission and how they achieved it.

xxxx Nicky

[Centriole in reply to Nicky100]

Thank you. I will take a look at that.

It is my family member who is affected by this horrific disease.

Her pattern of spread is such that the surgery would not be able to get everything and they feel it would impact quality of life so they did not do.

After chemo her ca 125 only got down to 100 but has started to rise on avastin up to 300 after 3 doses. Waiting for a scan.

I was just hoping to understand a little more of other options to keep her hopeful.

[Nicky100 in reply to Centriole]

Look at Patricia Peat’s website. It has a lot of info on it.

[harpist_UK]

I have had no surgery. I was also told that diffuse spread meant that they would not be able to get all the cancer out and that some of my deposits were near major blood vessels - I am 3C, diagnosed November 2015. They said my quality of life would be better without. They got my CA125 down to 20 (from 13,000!) on chemo alone with Avastin added in from Feb 2016. They never said NED - there were always 'one or two nodules' and of course microscopic disease they cannot see. I absolutely reclaimed my life after this treatment and during the Avastin treatment - my CA125 did fluctuate on the Avastin, but despite the odd rise there was nothing to see on the scan - it held it very effectively. Since July 2016 I have been on and off chemo and am unfortunately now platinum resistant, but my quality of life until recently has been pretty much ok. There are lots of different views on the surgery thing. I was reviewed 3 times but they always said no. A friend who had surgery and was declared NED sadly passed away this spring. So you never know. It's always worth getting a second opinion to help you evaluate. All the best!

[Centriole in reply to harpist_UK]

That you for that. Keep on fighting!

[Zena41]

I was told no to surgery due to the surgeons at my trust did not feel they could do it all.

So I got a second referral to London and she did the op I now have a clear scan 🙏🙏

[IrishMollyO]

Hi there

I thought your question and story was familiar so I looked back to 5 months ago. I was one of the ladies who replied to you who became NED with no surgery seven years ago. I am now 73 and was diagnosed with stage 3c PPC. I reacted very well to chemo. I recurred in my lymph nodes in 2015 but after Carboplatin I became stable again.. I have just recently completed treatment for a totally unrelated Breast Cancer.

You may not have got many replies as I suspect there are not that many women who got by with chemo only. I do hope you find more replies to reassure you. Take care

XXX

💚💕

[Bliney]

For surgery I had a second opinion at Queen Charlotte's Hammersmith in West London and all the cancer was removed. I also had diffuse spread everywhere including round the major vessels. It might be worth a second opinion