Second debulking surgery

[Tealgirl7]

I am a long-term survivor. I was diagnosed in 19 years ago stage 4. I have had many treatments. I had my original surgery after chemotherapy at the beginning. I still have persisting lymph nodes and have never been cancer free. I am considering having a second surgery to remove the nodes. They are around my liver and aortic area. Has anyone gone ahead and had this and if so how did you do. Not sure I can get my team to agree and waiting for some appointments. Best to everyone and thank you for your input.

[chocolatemilk44]

Congrats on being a longtime survivo

[Tracywrif]

in answer to your question - I am not in that situation , but just wanted to say wow , 19 years stage 4 - I’ve done almost 3 years stage 4b so far so this is wonderful to hear . Can I ask , how are you symptom wise ? Are you able to lead a good ( but different) life? I’ve been left disabled after treatment due to complications with magnesium levels and carbo , so I’m adapting to living differently.

Much love

Tracy

[Tealgirl7 in reply to Tracywrif]

I am doing well . Not as active for sure but enjoying life. I am very grateful for each day.

[Robbo16]

Hi - I had 2nd debaulking surgery and removal of lymph nodes in my pelvis back in April 2022. I was then NED until August 2024 when the lymph nodes near my trachea have steadily increased in size on each two monthly CT. I have stayed on watch and wait since then as I’m currently asymptomatic but I will be having more chemo when that changes.

I hope your journey continues for many more years xx

[SopSinger]

If you're not confident in your team, could you ask for a second opinion? The Royal Marsden in London is a cutting-edge research centre, or the amazing Prof. Christina Fotopoulou at the Hammersmith Queen Charlotte is a radical surgeon, though I don't know if she does lymph node surgery. (She may have a colleague who does.)

[lesleysage]

Hello, I had secondary cytoreductive surgery for lymph nodes, one close to my aorta and another close to the renal artery. My team for diagnosis, first surgery and first line chemo said, "mortality rate too high for us to consider surgery", so as SopSinger in the previous reply shares, I am one of those who asked for a second opinion with Prof Christina Fotopoulou, back in 2013. Clearly her team was 100% successful, so I'd definitely recommend you explore the option.

As you are in Canada, if you get stuck finding a skilled enough surgical team with the top-notch operating theatre equipment that is needed, I suggest you contact Ovacome ( as Prof Fotopoulou is on their advisory panel and over the recent years numerous surgeons from all over the world have sought her guidance to learn the techniques needed. Ovacome website now has numerous references to secondary surgery (ovacome.org.uk/pages/search... and my particular story gives the criteria the surgical teams consider for achieving success (ovacome.org.uk/Handlers/Dow....

Ovacome website gives ways to access their Support team, who many of us have, and do, use:- ovacome.org.uk/Pages/Catego...

Warmest wishes.

[Tealgirl7 in reply to lesleysage]

Thanks for your reply. I have an appointment with a surgeon to talk about the 2nd surgery so fingers crossed. I spent my career as a surgical nurse so I tend to think that way. Not sure my doctor agrees but she is very open to me having second opinions. I am presently on a drug I open not sure if it is working. I have a scan in a couple of weeks so I will find out a bit more. I think I have had over 50 CT scans. Best to you

[Weaves]

I’m also stage 4. I had my second surgery Feb 2024. This was to remove cancerous para aortic lymph nodes. I had no cancer elsewhere. I’m not sure it was that successful, as the cancer was back in my para aortic & now supra clavicle Dec 2024. I have just had 5 sessions of radiotherapy on the supra clavicle node. I can’t tell you how successful this was has been, as I’m not due my follow up scan until May. But if it proves successful, then the plan is to target the para aortic lymph nodes with further radiotherapy.

I think it might be an idea to get a 2nd opinion re treatment options. I hope this helps, good luck x

[Tealgirl7 in reply to Weaves]

Thanks I am booked for a second opinion.

[Saintgermain]

Hi Tealgirl, I'm in the same situation not 19 years out they pop up in my lymph nodes if I may ask are you low grade? I recently switched my care the new Gyno/onc said she has patients that it only shows up in the lymph nodes no organs some are 15 years out.

[Tealgirl7 in reply to Saintgermain]

High grade. Thank you for your reply

[Cinemalover]

Hiya, great to hear you are doing so well after 19 years, sorry I can't help with your question but I was just wondering how you and others have had surgery being stage 4, I was diagnosed in December 2021 and was told that I wasn't eligible for surgery, I also had breast cancer stage 1 which has now gone TG, I had an ovarian reoccurrence in March 2023, but responded well again, I'm Braca 1 so am now on parp inhibitors and Avastin infusion every 3 weeks until December...doing well, good luck with your research. Thanks