Cytoreductive surgery

Hello PocketRocket

I am sorry that you are going through all of this. Treatment can be difficult and the side effects can be tough at times. I hope that you are recovering from your chemotherapy. I am sorry that you have some neuropathy from it and I hope that given time this will improve for you. The main thing that helped for me was to keep moving as much as I could. 

I can understand the anxiety around the scans. I felt the same. I know we have to have them but the waiting for the results its really hard and your mind starts to think of the worst case scenarios and every ache and pain makes you feel the worst. But it is better to know what you are dealing with and then the doctors can help with the best treatments available. 

Taking the treatments one step at a time is a good plan. And don't be afraid to tell your team of any side effects that are causing problems. I had problems with my veins for a short time after chemotherapy- my nurse said it was normal and something about the chemo irritating them. I can't remember exactly what she said but I know they had more trouble getting blood out.

I hope that your appointment on Wednesday gives you the answers that you need and the reassurance around the questions you have about treatment. My treatments were chemotherapy and 25 sessions of external beam radiotherapy. I did not need brachytherapy because my cancer cells had grown away from my cervix. 

I have found this from the NHS about the cytoreductive surgery and thought it may be something that you would like to look at before your appointment and then maybe think about the questions to ask your consultant. It may not all apply to your situation but I thought there was some good advice about what happens after the surgery and your recovery. 

Cytoreductive Surgery (ruh.nhs.uk)

Hope this helps a bit and if you have any other questions please do ask. Good Luck for Wednesday and let us know how you get on.

Jane

Thanks Jane,

This information was given to me back in March but I forgot I’d been given it until you have just reminded me.. it has definitely helped with some questions for Wednesday and hopefully by then I’ll have a clearer picture of what they expect to do during the operation 

Thank you 

Hello PocketRocket,

I received my diagnosis after undergoing a hysterectomy and right nephrectomy in back September 2017. Fast forward a few years and the residual mass left in my right pelvis decided to have a grow spurt (all detailed in my bio). Even though my cancer is grade 1, it’s now behaving like an ovarian cancer in its recurrence behaviour.

Due to the size of my tumour, I was initially referred to the complex gynae team at the QE in B’ham for radiotherapy. Long story short, I was given the option of trying neoadjuvant chemotherapy in the first instance to try and shrink the mass to see if surgery was an option. The Royal Marsden refused point blank to operate. At this stage, the tumour was starting to invade my rectum wall, so I had nothing to lose.

I finished 6 rounds of Abraxane/Carboplatin chemo in January 2022. Even though grade 1 cancers don’t normally respond very well to chemo, mine did, so having surgery was now an option. I was given 4 weeks to recover from my last chemo cycle and had cytoreductive (debulking) surgery on the 24/02/2022. Surgery this time took 7.5 hrs (my 1st surgery was 8.5 hrs).

As for the surgery, I had quite a bit of work done, so I was in hospital for 8 days (1 night in intensive care as a formality). My surgery included an anterior resection, so I’ve ended up with a permanent colostomy (all very doable). I also had a pelvic wall resection and an upper vaginectomy. My brilliant surgeon also created an “ Omental J Flap” - this would help protect my bowel loops attached to the vagina and pelvic wall should I need general radiotherapy. This might be something to ask your surgical team about if you’re having radiotherapy after surgery. Yes, my surgery was complex, but it resulted in complete macroscopic clearance for 6 mths, so it was definitely worth it.

Regarding recovery, the physio had me sitting out of bed within 48 hrs. I had a total of 52 clips holding my abdomen and pelvis together, so I did struggle a little bit initially getting in and out of bed. I took co-codamol for about 3 weeks and struggled with fatigue (I had plenty of afternoon naps!).  If I could give you any advice, please don’t overdo things. I foolishly decided to paint the garden fence after 8 weeks and now have an incisional hernia.

To aid with my recovery, I also had 6 weeks of “well woman” physio. These sessions were invaluable as they helped me deal with some of my chemo side effects too (I was left with a balance problem and PN in my toes).

I had another recurrence in October and underwent SABR radiotherapy for a dodgy iliac lymph node that had raised its ugly head again. 

Yes, the 11 mths that I underwent treatment and surgery were tough but I’ve come out the other side. My stoma doesn’t rule my life and I’ve been back at work for 12 mths now - the only time I’ve taken time off work was either for radiotherapy or medical appts.

I completely understand your concerns about how your body is going to cope with the surgery. I was 54 when I had my op and wasn’t at my slimmest but I recovered really well. I was lucky as hubby was able to work from home for a week to look after me when I got out. We were soon fed up of each other, so he returned to work after 10 days lol. It was funny at the time, after he got in from work each day, he spent about 10 mins picking up all the things that I’d dropped throughout the day. 

Fast forward to now and the only issue I have now is a back problem. Whether this has been brought on by having 2 major pelvic surgeries and SABR radiotherapy, no one knows. For me, having surgery was a no brainier as I wouldn’t be here today if I’d declined the option.

I hope you will feel a bit more reassured after your appt on Wednesday. I don’t posted much these days but I’m happy to answer any questions that you may have.

Take care,

Liz x

Hi Liz,

thank you so much for your post. It was really informative and extremely helpful . You’ve clearly been through the mill and cone out the other end which is amazing. I’m sure after Wednesday I’ll have more questions so it would he really great to keep in touch.

My biggest issue is taking things easy and so I really appreciate your comments regarding painting the garden fence. It’s exactly the kind of think I would do. 

I’ll post an update on Wednesday once I know hr next steps 

Carmelina x