cancer.gov/news-events/canc...
I know some of you have indicated your support for having 2nd surgeries during recurrence, but I'm curious as to anyone who has had 2nd surgeries and your outcome? Though this article is from 2019, it's not that old that the data would be irrelevant. Seems they see that there is no significant difference in overall survival for those who have 2nd surgeries compared to only having chemo/maintenance treatment for recurrence.
What are your thoughts?
-Steph
Hello Steph
Thank you for your post. I wanted to add that the DESKTOP 3 trial results which were published in 2020 also looked at secondary surgery and did show a survival benefit. There is information on the Cancer Research UK website here: cancerresearchuk.org/about-...
For anyone clicking through, please be aware there is discussion of survival statistics at that link.
Secondary surgery isn't suitable for everyone, and Professor Christina Fotopoulou explained more about this at a talk at our Members Day in 2019, which you can watch a recording of here: youtube.com/watch?v=Lm2euVW...
She doesn't refer to the DESKTOP3 long-term results because they weren't published at that time.
I hope this information is useful.
Best wishes
Anna
Ovacome Support
Thanks so much for this! I did not know the Desktop 3 results were published in 2020.
Yes. I can see she really knows her stuff. I wonder if there's anything specifically on clear cell & endometrioid variants (both of which I have). My team has never made a distinction between my OC & the normal OC, not in treatment or prognosis so I'm left thinking whether they're aware it's different but don't want to tell me or whether they even realise. I feel like they're merely going through the motions. Would love to see Prof C on these types if anyone has a link. She sounds so knowledgeable.
It's clear to me that a woman who's always had menstrual issues, starting from the age of 10, who's never had children, is more likely to develop OC in her 50s like me. And to develop the less common types and that possibly both the types I have are more aggressive (although no one has told me this outright) so need to be treated accordingly.
Perhaps we shouldn't just be saying that OC is the silent killer, we should be looking at risk factors and warning women. And warning them that other less general symptoms could indicate cancer, eg post-MP bleeding or painful intercourse.
Had a scan yesterday and am hoping now for some good news.
Happy New Year, everyone!
CAG xx
You are absolutely right about warning other women as the warning signs are so wide ranging. I am brca negative but my warnings to my daughter and sisters as to what to get checked and not accept the GP reasoning at the first check. I went through all that she describes in the video for 2 years with my GP. I accept everything she says about the rarity so therefore GP's are putting symptoms down to other stuff. I feel it's my job to inform other women as you rightly say about other potential risk factors they may be relevant. Although these may be anecdotal and not proved scientifically if meant early detection for some that's got to be a good thing. Wishing you well.
Yes. That's why it's so depressing that, whatever Ovacome does or Ovarian Cancer Action, there's rarely any media coverage of OC even on OC day or gynae cancer month. I have to say that two of my friends were tested and diagnosed around the same time as me after reporting these symptoms. One in her 50s like me, one in her 70s But neither of them are at my GP practice. It's so arbitrary. Wish you well too. xx
Hello Candyapplegrey
That you for your comment. I’m not aware of any talks Professor Fotopoulou has given on those specific sub-types of ovarian cancer, although she will have treated these surgically. You can always ask your team to refer you for a second opinion from Professor Fotopoulou if you wanted her expert opinion on your individual situation.
You may be interested in this talk by Professor Marcia Hall on rarer ovarian cancers: ovacome.org.uk/ovarian-canc...
The NiCCC and PEACOCC research studies are looking into treatment specifically for clear cell ovarian cancer. The trials are closed and awaiting results but if you are interested in the studies more information it is available here:
NiCCC - cancerresearchuk.org/about-...
PEACOCC - cancerresearchuk.org/about-...
Although menstrual issues broadly are not currently an identified risk for ovarian cancer, endometriosis can increase the risk of ovarian cancer. You’re right that risk of ovarian cancer is lower in women who have had two children. There is more information on ovarian cancer risk factors on the Cancer Research UK website here: cancerresearchuk.org/health...
We completely agree that it is not helpful to refer to ovarian cancer as the silent killer and as a charity this is not language we use. We raise awareness of the signs and symptoms through our BEAT campaign and clinical education programmes. There are details on our website here: ovacome.org.uk/Pages/Catego...
I hope this is useful. If there is any further information you need please do get in touch. I hope your scan results are available for you soon.
Best wishes
Anna
Thanks, Anna. I will check these out. Sounds interesting. I'm not sure my hospital has a specialist in OC so I'll ask them. Cheers Candy
Thanks so much for sharing Anna and for raising this topic Steph
Just what I didn’t want to read .Going in for second surgery next Thursday 😳
Absolutely scared stiff as it is . Now I’m wondering if it’s worth it .
Oh but it seems to be worth it! From the summary of Desktop 3, seems there is a one year overall survival benefit to have surgery and chemo. You got this! 👍
Hi Sheila, just to try and put your mind at rest a year ago I had my third surgery done at the MRI for OC and found it not so gruelling as the time before, and am having a year of having a normal life, going for check up in Feb. So I’m sure everything will be good for you, I found with Covid the hospital was cleaner and there seemed to be more staff around! Chele
Hi, I sometimes find while information about OC can be interesting & helpful but I also feel it can also scare the life of you & some women can deal with it better than others. Don't worry too much though because at the end of the day we are all different & our survival rates depend on a lot of things. I recurred Sept 2020 while still been on Avastin (Bevacizumab) & just a year after finishing front line treatment. After an ultrasound & biopsy I had second surgery. I won't lie, recovery was tough for a few weeks due to an infection & I am back on chemo since March but I am back walking 6/7kms everyday, doing all my household chores, DIY & have gone on holidays abroad. I don't let OC or covid stand in my way. You go in and have your surgery with a positive mind & know that your surgeon is going to do the very best for you. You will be up doing the things you love in no time & we all have to make the most of our lives no matter how long it's for. I remember after my first big op when a stoma nurse came out to see me & I was feeling very down at the time, she said to me "you could go out your door one day and be involved in an accident or have a sudden heart attack & not survive but with OC you get a chance to live your life". I thought it was a cruel thing for her to say at the time but you know what, what she said is true, I am still here 3 yrs later so yes it is definitely worth you having your surgery. I wish you all the best & I hope all goes well for you. Let us know how you are doing when you are feeling up to it. Hugs Xx
Thanks for posting this Steph. I think it’s interesting from a wider perspective. Just reading a bit about Parps recently which is a bit equivocal about increased overall survival. I wonder if there’s something else going on? How are they measuring overall survival?
Both Parps and second surgery are relatively recent things…perhaps the evidence is not really there yet?
Also I think that even five years ago, people who had second surgery were those who had aggressive disease and few options, so many of those would not have shown much benefit?
It’s great that things have developed so rapidly but we may have to accept that the downside is not many of us have lived long term on Parps or with second surgeries…. so we don’t know what we don’t know.
OC is quite a personal disease… I don’t think my recurrence would have been operable being in the para aortic lymph nodes. But someone with a recurrence in the abdomen might be different.
I don’t know anything for definite but that’s my hunch xx
Hi Lyndy,
Thanks for your thoughtful response. I do agree with you, seems there is still no strong consensus on many of the different treatments largely due to ladies responding so differently to treatment. Our oncologist told us that surgery would only be viable if the surgeon is confident they can remove all the disease with clear margins, so it depends really where the disease presents itself during recurrence. We'll cross that bridge when we need to. Just going to live day by day at the moment.
-Steph
Not been in this position, but I would presume that, if it didn't help, treatment wouldn't be offered so think I would say "yes, please!"
I had second surgery on 9th January 2018 and my consultant told me it had just been advised that second surgery could improve outcomes in some women. I had chemo after and i have been very well up to very recently, so definitely worth it for me. Good luck Manchesterlady and hope you get 4 good years as i have had All the best
Diane (currently on house arrest for covid!) 😂
That's very good to hear Betty! I guess I was thinking, the recovery part for operations always takes a toll on the body, so curious for those who have done it and what they thought.
Hi thereThe op was a big one and recovery was tough as you would expect, but within weeks i was back walking my dog (betty) over the moor every day, but thats my sheer bloody mindedness (not to be underestimated). I did have a bowel blockage from adhesions 6 months after the second op so had a further operation for that. Bowel blockage risk does increase after abdominal surgery and i guess the more you have the higher the risk which is what you asked. Since then i have lead a ‘normal’ life with no long term effects following surgery, would i do it again… absolutely!
Diane
X
There's also the soc1 trial showing a benefit of second surgery in recurrence (link gives survival data)
thelancet.com/journals/lano...
So of 3 similar trials only GOG 0213 fails to show a significant benefit for secondary surgery. It seems this is because those chemo worked better than expected in 0213 (and it's not clear why). Even for 0213, although women didn't live longer overall, they had a longer time before the cancer returned. This might mean less time on chemo; although that would have to be balanced against time recovering from surgery.
Since 0213 was published first it grabbed the headlines & the (opposite) findings of the other 2 trials never quite managed to balance out the received wisdom.
For those with clear cell or other types that don't respond much to chemo, the benefits of surgery might be even greater. In addition, if clear cell recurrs more likely than high grade serous to come back in a way that can be helped by surgery. Sometimes in the very long term.
All in all I'm not sure there's good evidence to say surgery won't help. In some cases it will, so I'd suggest in depth discussion with your oncologists AND surgeons.
The take home message is that there are always options to explore.
Best Wishes to all
Hi Steph, I had second surgery Dec 2020 after recurring while still on Avastin. While recovery was tough for a few weeks after getting an infection, I am now back on chemo since March & am back doing all the things I was doing before the surgery. I am lucky to have a brilliant Gynaecologist /Surgeon who I trust completely & I know he wouldn't put me through surgery on less he felt it would benefit me & give me more time with my family. I am still here nearly 3 yrs after my first op. Hope all is going well for you at the moment Xx
Hi Steph. I've had second surgery (laparotomy) for my first and so far only low grade serous OC recurrence, which was followed by platin/taxol chemo plus Avastin and later Letrozole. In February I'm coming up on 4 years since that second surgery.
I'm glad I opted for it, as all visible tumors were - once again - removed. Also, I understand that for my type of OC, surgery is pretty much one of the best treatment options around... so I'll kiss the hand of any oncologist who will offer me another chance at having a go at me with a sharp knife (better not be a dull spoon!) for my next recurrence, if and when it happens. 
But every disease and woman is unique, so your mileage may vary..?
Anna & the ladies also posted some good information and links.
All the best for you and your partner. Maus.
I had five surgeries between 2000 and 2012 and have been in remission since.I know that is very rare and I am suffering from bowel adhesions but I never thought that I would get to 60 let alone 70 which I did this year.I planned my funeral in 2004 and wrote a will both of which need updating now. Radical surgery isn’t for everyone but I weighed up the odds each time and wasn’t forced into it.Good luck Viv
Hi tutti, did you ever have a bowel obstruction after all your surgeries? I read that you suffer from bowel adhesions. I just came home from the hospital from having a small bowel obstruction, which was so painful. I’ve had abdominal surgeries from my cancer and a few other things. My dr. told me that I have many abdominal adhesions and that gives me a higher risk for an obstruction to occur. I was diagnosed with Fallopian tube cancer stage IV in Oct. 2019. Just sending you best wishes from the U.S. Donna.
I’ve had more bowel obstructions than I can list here!Initially they were severe and I was hospitalised for several days but in the last few years I have been advised to follow a low residue diet mostly beige coloured food which goes against everything I know and love about food so I generally follow it but still eat fresh fruit two or three times a week and when I have pain stick to a soup day.I also have to take laxatives now daily which can result in wind and looseness.I had a colonoscopy recently and they think because of narrowing of the colon near my Stoma everything gets stuck there. massage also helps in the middle of the night and walking around.Hope this helps Tutti
Hi tutti, sorry that you had to go through those. I had two severe ones before also. The first one was after my ruptured appendix and the second one was after my cancer surgery in Jan. 2020. At least I didn’t have to have surgery to open these up, but oh so painful. I see that you have a stoma, so that can create a problem also. Abdominal surgeries are tough for sure with the bowel complications. I’m just going to adjust my diet too. I have a good appetite usually and love to eat food that probably interferes with my intestines. Right now, the dr. said soft foods 6 meals a day and go at it slowly. If I get pain, then I have to drink liquids for a few days so it can settle down. All in all ,it’s a real pain and you know it. Thanks for sending me a message and I wish you health and blessings along your journey. Your teal friend, Donna. Hugs
Hi Steph and everyone ,Thanks for sharing the article .
I’ve had three surgeries since 2016 when I was first diagnosed . Best of luck to anyone preparing for surgery or undergoing treatment .
Happy new year ,
D
Hello, I had second surgery last summer, a big un ( you can read my posts if wish more info) and ended up with stoma. I was fit and recovered quite well but it was tough initially. I find the chemo side effects much, much harder to deal with , to try put it in perspective for you . The most important thing was surgeon was positive he could clear it all( and liaised with prof C at my request) and as far as we are aware he managed to do that. I am having problems with a hernia now and await results of scans to check progress this month. For me, and its a very personal decision, the fact that surgery was an option and my best chance to have a good filleting and get rid of this vile disease was what made me go with this choice. I wish you well whatever you chose x
Sorry to jump in and sorry if this has been discussed previously but as the thread relates to surgery I wonder if anyone has had Plasma Jet surgery which seems (in some cases ) to be pertinent to OC.I've copied, in part, the summary from the Royal Marsden:
'During Plasma Jet surgery, cancer cells are removed from structures such as the bowel and diaphragm, without causing damage to the surrounding tissue. This means there is often no need to resect or remove the tissue in these areas.
“Previously, many women undergoing extensive surgery for ovarian cancer had to have parts of their bowel removed in order to eradicate the disease. Extensive removal of bowel tissue can mean that a stoma is required, which has a serious impact on a patient’s quality of life after their surgery and the amount of time they need to spend in hospital afterwards.
With the PlasmaJet, there is less need for bowel resection'
Hi! I have not heard of this method for surgery but it sounds like a much better option, since it reduces damage to tissue internally. I did find this publication on plasmajet surgery online - pubmed.ncbi.nlm.nih.gov/334...
Seems the conclusion is that it is just as effective as traditional method of surgery. If it causes less internal damage, I would definitely opt for this if there is an option.
I had plasma jet surgery and was deemed to have a successful surgery and an exceptional recovery. I think this was because I haven’t really had the complications from major abdominal surgery.
They said it wasn’t so much about outcome as quality of life. I wasn’t cancer free after surgery as even with plasma jet they couldn’t get everything without too much damage to surrounding tissue.
I would recommend asking about it if available.
Hi, I had 3 surgeries and am hear living a good life still with stage 4 effectively. I think surgery with the right surgeon will usually have (even a slightly) better outcome, but I will read this and have a look- thanks for sharing. xx
2nd recurrence. 4 chemo combos all failed. Any suggestions? 
2nd recurrence
Facing chemo for the 2nd time and frightened
Recurrence
