Looking for advice on surgery/surgeon for Stage 3C PPC

[LM123456]

Hi Ladies,

I’ve been a member here for a while as my mum was sadly diagnosed with stage 3C PPC a few months ago. I have found your posts and support for each other so helpful. I am looking to tap into all your knowledge and get some advice from your experience of surgery.

Of course we want the very best surgeon to carry out the operation to give mum the best chance of everything being removed and get the best results and longest remission. After initial consultations at our local hospital we sought a second opinion from a highly regarded professor in London who has written the recent guidelines for treating PPC and carries out regular surgery that my mum would require. She did inspire real confidence with her experience and understanding and the explanations we had been seeking.

Now we are nearing the time that my mum will need to be operated on, some guidance would be really appreciated. We are hesitating going ahead with her in London, rather than the team in our local hospital for a couple of reasons:

Firstly, she has said that she would carry out the entire operation, including the resections of the bowel, alongside the hysterectomy, removal of omentum etc. If the operation was carried out locally, they have said a different surgeon would remove any tumours from the bowel. What is the view on the level of specialism needed for the bowel, and do you think a PPC specialist would be suitably qualified and experienced to do that part of the operation?

Secondly I have a few reservations with my mum being at a London hospital for the operation. She'd not then be local to us and I'm concerned about the travel home after the operation, as well as follow up appointments. Have any of you experienced any problems with having the operation at a hospital away from home? I mainly mean in regards to follow up treatment and appointments? Information/biopsies being fed back to the local team?

We believe the London Professor is the best qualified and has the most experience, but keen to understand how valid our reservations are. Thanks so much for any help you can offer and sending a lot of positive energy to everyone on this site. Xxx

[Lyndy]

Hello... The hospital I chose to have my treatment wasn't London but it wasn't my local hospital either and is about an hour away. Although visiting was tricky at times I never regretted my decision....I absolutely trusted my surgeon and he did a good job. Given the choice I would always go for expertise over convenience.

Follow ups were done at the hospital and yes it can be frustrating and slow.

I wouldn't put your Mum off going to London but in the end she must be happy with the team treating her...then she will feel relaxed (as far as you can when going for surgery!)

Lxx

[LM123456 in reply to Lyndy]

Thanks so much for your advice that’s really helpful xx

[January-2016-UK]

I don't know how far away you are from London and if other family members will help with visiting. Bear in mind though that your mother may not want too many visitors for the first couple of days anyway. You could try and negotiate a discount on accommodation if you want to stay. You don't need to stay locally, you could tube it in. But with mobile phones, Skype, etc. you could almost be on the ward with her. I live two-and-a-half hours from London and took a taxi from the hospital to the station, train home and then driven home. Just remember a cushion to place under the seat belt, wherever you have she has the op.

Ideally she needs a surgeon who regularly carries out this type of operation. It sounds from what you say, this is the surgeon based in London. I have all my treatment in London so I don't know about feedback to your local hospital.

All the best!

[Hidden]

Hi

I’m stage 3c oc or ppc high grade serous (they can’t decide)

My main advice would be to make sure that whatever surgeon you opt for, that he or she will be radical in their approach. There was a study conducted a little while back (the name of which escapes me right now) that proved that the more radical the surgery the better the outcomes overall.

My surgeon was very radical. He told me that during my operation that he found my bowel was stuck to my bladder (which didn’t show up on the scan) and debated whether to give me a stoma because he wasn’t overly sure that it was truly necessary but in the end he did. I was naturally devastated when I woke from surgery to this unexpected news. However, when this went to histology there was some cells burrowing through the bowel wall. He said that most surgeons would have scrapped it off the surface and not done a stoma, but I would have then ended up with an eventual bowel blockage and most likely early recurrence. Yes, my stoma was a price I paid for optimal debulking but I’m now so grateful that he did it. I’ve learned to live with it and hardly notice it now. I’m not saying it will never come back, but I’m currently almost 7 months into remission, and had another clear scan 2 weeks ago.

Let us know how she gets on

Take care, Marian xx

[LM123456 in reply to Hidden]

Thank you for your reply, I’m really sorry to hear what you have been through but it sounds like you had an amazing surgeon. Thanks for your advice, take care xxx

[Eriksendi]

My local hospital didn't offer the radical debulking surgery I needed so mine was done at a hospital about 1 and a 1/4,hours away. My husband stayed in a B and B near to me for the first couple of days so he could spend more time at my bedside. I must admit though I did not want to see any other visitors at first.

I also had a bowel resection at the same time and I had a gynaecology consultant and a colo rectal team perform my op. I already had a stoma due to a perforation. They took two pieces of bowel away from the sigmoid colon and the small bowel. Luckily both came back non cancerous. I'm glad they took it out though, just in case.

I also have stage 3 ppc.

I hope everything goes well for your mum x x x

[Sarah_t_mvp]

I went to Belgium for my surgery because I wanted the best surgeon in Europe and I wanted the plasma jet device to be used in my operation. With this device there is a smaller chance that a stoma will be required and also more chance of getting out all the cancer minimising damage to surrounding tissue and organs. For me it was a no brainier - you go to where you can get the best surgery. At the Royal Marsden they now use the plasma jet so if you insist on staying in England then I would strongly advise that you have surgery there. There is a massive correlation between the success of surgery and survival times.

Hope this is helpful

Sarah xx

[LM123456 in reply to Sarah_t_mvp]

Thank you for your reply, the plasma jet sounds interesting so I will definitely research that. I agree, we have to go where there is the best surgeon it’s just getting all of our questions answered to find them. Take care xx

[Purple_k_in_Oz]

I can’t comment on the decision making for advanced stage PPC from a personal point of view but i think there is a direct correlation with having the best surgeon and then the best overall outcome. So although the follow up is very important if I had to rank my “team” i would want my surgeon to be the best, followed by the oncologist, if that makes sense! Hopefully the oncologist’s job will be made easier by optimal surgery. Of course, if they’re both top of their field then that’s even better.

Anything left behind gives a higher recurrence risk. The London professor sounds excellent but i would be asking very direct and specific questions about her experience with bowel surgery. She’s likely an advanced pelvic surgeon as well as a gynaecology oncologist so i would expect her to have significant experience in bowel surgery but don’t assume; ask those questions to confirm. Good luck xx

[LM123456 in reply to Purple_k_in_Oz]

Thank you for your reply, really appreciate your advice. Take care xxx