Secondary Debulking & the Desktop III Study

[Luci22]

Hi everyone,

I'm wondering if anyone has had a secondary debulking? How was your experience?

I've learned about the recent DESKTOP study published in 2020. It has found that it is worthwhile to have a secondary surgery followed by chemo and a parp, if the surgery is optimal. Has anyone had experience with this option? Has anyone chosen to skip surgery and do the chemo/PARP route and how did you find that?

Lots of questions I know. My mom has been given these options and she is asked to choose what she wants to do. On top of that she has a very large hernia so it would have to be added in at the end of the surgery to put a mesh in. We aren't sure what to do. Such a tough decision.

Any advice would be helpful.

Thank you!

[lesleysage]

Hello Luci22, Ovacome’s Support freephone helpline 0800 800 7054 would be a good place to start. Also requesting a second opinion is every patient’s choice within NHS and the opinion of one of the top teams, eg Prof Christina Fotopoulou at Queen Charlotte, Imperial NHS Trust or there’s a top guy at The Christie ( sorry his name slips my mind) ... but Ovacome Support team will have details am sure. Take care of yourself as you help your mum. Lx

[BellmoreBelle]

Yes, I had a secondary debulking (November 2019), followed by chemo and then Niraparib - I do believe that's the only reason I'm still here - and despite losing just about every "unnecessary" internal organ I could possibly have had taken out (e.g. spleen, gall bladder), I recovered well and felt normal really quite quickly. Plus having been through the process once over already meant I knew what I was in for...

If surgery was offered, I would take it, no questions asked.

[Luci22 in reply to BellmoreBelle]

Thank you for your feedback and sharing your experience. That's great news for you. Can I ask where your cancer recurred ? My mom's is in some pelvic area lymph nodes and the groin. Although another CT would have to be done to check for update. Onc. says he can do the surgery but will also have another surgeon who will finish up with a mesh as she has a large hernia already and doing the surgery would cause more of a hernia I think. Glad you have had good success with yours. p.s. where do you get treated? We're in Canada, ON.

[BellmoreBelle in reply to Luci22]

Hi Luci22, I recurred in multiple places - liver, lymph nodes, diaphram (they were "stripped" during surgery), various places round the abdomen etc. They'd told me beforehand, based on the CT scan, there wasn't much - and then I woke up in ICT to be told about just how many organs were gone, stripped, or resectioned! But I did recover - I have immense trust in the surgeon, and I know secondary surgery is only offered to some women. Ultimately I have recurred, but I had many months of symptom-free good quality of life before starting chemo again. My initial surgery/chemo (x2) was done in the UK on the NHS; I came to Australia last year as my Mum became suddenly and unexpectedly very ill, and I subsequently recurred while here, but I had already established continuity of care between my UK oncologist and an Australian colleague he collaborates with, so I am well looked after and they confer together about my ongoing treatment.

Wishing your Mum all the best - I admit I did not have any additional complications such as a hernia!

Carol

[JustKBO in reply to BellmoreBelle]

I totally agree. I had secondary debulking followed by chemo and have been on Rucaparib. For 15 months. Go for it. I take everything the experts advise with open arms. Good luck.

[Towergirl in reply to BellmoreBelle]

I have relapse after 4 years now stage 4a HGS and BRAC2. I’m having Chemo Cabo/toxal have been offered debunk surgery scrapping liver, diaphragm, removal of spleen and surrounding complex surgery Using desktop study. After chemo 3 cycles scan showed very little on liver and spleen (tumour above) reduced to 3cm. Finishing full 6 cycles as oncologist thinks it might removal all visible.

Op still an option but worried about having no spleen . Would be pleased to know how you coped with infections, socialising going out, holidays abroad etc. told not to worry will be on low dose penicillin by oncologist but told by surgeon quality of life wouldn’t be the same as with spleen! I’m 75 and looking for quality so I can enjoy a few years more. Going on Olaparib PaRP for 2 years but no Avastin NICE wouldn’t fund for 2nd line and I missed out at 1st line Chemo/surgery, not sure if available or not in 2018.

Would welcome any suggestions information as not many ladies mention spleen removal.

You sound so positive as do all the brave ladies on this journey. Good luck Lin x

[Riverflo]

Hi,I am in the same position as your mum except here in Spain, Niraparib is not offered after second surgery and chemo because the surgery removed the cancer, not the chemo. But I have taken the surgery option anyway because the onc and surgeon think it's the better option because it leaves the other options available in the future.

Best wishes with whatever you decide. xx

[Lockygill]

I had secondary surgery after my reoccurrence 2 years ago followed by chemo. They removed my spleen, gallbladder and scraped my diaphragm. After lots more chemo, I am now on a clinical trial and still fighting. Wishing you all the best. Gilly x

[Luci22]

I truly appreciate all the responses and words of encouragement so far! This has given me and my mom comfort to know we are not alone in this second round fight.

For those taking a parp with chemo did you have to have the BRCA gene? My mom does not have it. She only has a gene mutation called BRIP1.

Thank you!

[Maus123]

Hi Luci. I had a secondary surgery / laparotomy for my recurrence in 2018, and am glad I chose this option rather than just opting for chemo alone. The surgeon removed 32 pelvic lymph nodes (11 of which were affected by OC), and had a close look at bowels and other nearby organs (what remained after the initial debulking in 2015 anyway) and confirmed they seemed to be clear. I recovered more quickly the second time around... probably because of the reduced scope of resections.Best of luck for your mom. xx. Maus

[Luci22 in reply to Maus123]

Hi Maus, is a laparotomy less invasive? My mom may need an incision because of her hernia and repair after. How do they get to the lymph nodes that way? I guess it's all possible. We will find out with the next CT scan of she can go ahead. Thanks for your words!

[Maus123 in reply to Luci22]

Laparotomy is the big abdominal incision and more invasive... laparoscopy is key hole surgery (sp?) and less invasive. Debulking is mostly done via laparotomy, if I'm not mistaken.

So in my case, both times there was a ~30 cm long vertical incision made, so the surgeon could have a good look at any abdominal/reproductive organs and whether they seemed to be affected by tumours and needed scraping off or resection or not.

For my recurrence, they had a basic idea already that it was in some of the pelvic lymph nodes (from a preceding PET CT scan) and focused their activity mostly in that area, but also checked the bowels etc. I am not sure but I guess as a surgeon, you gently push things aside that are in the way, until you get to the target organs like lymph nodes?

Crossing my fingers for your mom. She's lucky in having a caring daughter who is not afraid of getting into the treatment details to understand implications etc. xx. Maus

[Luci22 in reply to Maus123]

Oh thanks for your kindness. I just couldn't ever let her do it alone. It's such a hard road for anyone involved and going through it. All the best to you. Thanks again.