Radical surgery

[cmeany]

Hi my sister has a recurrence of sex chord stromal tumour of ovarian origin with small lung spots

Chemo is not working and although we were refused surgery before chemo in our current hospital we have has a second opinion with Dr. CF in Hammersmith hospital and she agreed to do radical surgery to removed all the abdominal tumours in the peritoneum.

I fear that this may be a very challenging surgery to recover from and she will need chemo after for systemic disease and there is no certainty of benefit.

Can anyone tell me about their experience of pain and recovery post this massive type of surgery and was it worth it.

I understand everyone’s case is individual but any info would be great.

We will need to travel to Uk for this surgery and pay privately.

Thanks

[CallmeMum]

Hi lovely,

Recovery will be slow due to being a major operation but as they say in the hare and the tortoise slow and steady wins the race, if current chemo hasn’t worked then there are other options available and if they don’t work there is still the option of alternative medicines (cannabis oil) the thing is with cancer is drs have to try all different things and tweak to see what’s right for you (or your sister in this case) and sometimes can be a long process, like you I support someone with cancer and when she was diagnosed she got told celebrate your birthday early as you’ll only live 6 months with chemo it’s her 3rd year since diagnosis in March we weren’t sure who was more shocked us or the surgeon for the fact she was still on the planet (if I could have taken a picture of the surgeon I would have) she has had 2 reoccurrences since first line treatment and surgery but she’s still here currently on Niraparib as she’s not platinum resistant so please just hang in there these days there is light at the end of the tunnel xxx

[cmeany in reply to CallmeMum]

Hi CallmeMum

Thanks for your message. I agree we are not giving up hope at all yet. My concern is that she has quality time with her children ages 6 and 4 and my fear is that she has the surgery and is weakened and doesn’t get quality time. However it may well be the opposite. At the moment she is able to enjoy her family and function relatively well.

I suppose I just wanted to hear how people found the recovery period and some successful experienced to try to relieve some doubt that surgery is the way to go.

I and so happy that all is good 3 years later and this gives me hope thanks

[Lyndy]

Hello...recovery after surgery took me about 12 weeks...at least two weeks to feel ok and then the rest for (very slow) incision healing. Hope that helps...best of luck xxx

[cmeany in reply to Lyndy]

Thanks for that info- good to have realistic expectations for recovery time. 2 weeks to feel ok would be great.

I hope all is going to plan for you

X

[Hidden]

Hi there,

Your a wonderful person to support your sister the way you do. I also have sisters that would do anything to help me.

I am in the west of Ireland and my nearest oncology is UHL where they have told me surgery is not an option. Don't know whats going on in this country.

I wish you all the best of luck. I hope your sister recovers quickly and has many years to see heryou kids grow.

My thoughts are with you.

Ann Nora

[cmeany in reply to Hidden]

Hi Annnora,

It seems to be common that people are told surgery is not an option both here and in some uk hospitals.

I am glad that we got the second opinion but I really hope that surgery is the right thing to do and she can recover from it and not deteriorate.

We won’t give up yet.

I hope that you are keeping well. It’s a rollercoaster for sure.

Good luck

[Purple-iris]

Hi

Not sure how my surgery compares to what your sister needs but I had a radicle hysterectomy at St Thomas's London a year ago yesterday , including removal of omentum and stripping of disease from peritinium , they also found disease under my diaphragm which was removed . Was expected to be 3-5 hours and took 8 . 😞 My poor family waiting for news .

I was inoperable before chemo but had 4 cycles which shrunk disease and then had surgery .

Can honestly say it was the hardest thing I have been through and very scary as I had complications with breathing issues due to disease found under diaphragm, so needed to be on oxygen and also had an infection and pneumonia.

5 day stay in hospital extended to 10 . The surgeon told me it was big surgery but I was young and fit ( 53 at the time ) and would recover well . He said it would take 12 - 16 weeks . There were times when I doubted this but he was right . A year on from surgery I am fit and well , back to gym and Zumba and NED ( no evidence of disease ) 10 months post chemo . ( on Avastin till Jan as stage 4 ) Surgery was definitely the best option for me ( not sure I would still be here without it ! ) and I am hoping for a long remission ( fingers crossed and god willing ) But I totally under estimated how hard it would be in the early weeks . So important for recovery not to over do it and no bending , lifting etc .Not that I could if I wanted to . Couldn't bend to put my socks on or even lift the hair drier for the first couple of weeks . A little walking each day helped with healing and aches and pains . I coped mostly with paracetamol so didn't have terrible pain but was more uncomfortable. Good physio later is also essential . I was lucky to have some through Guys hospital , first one to one sessions and then joined one of their group classes and it had made such a difference . Your sister will defiantly need support and help with the kids for the first couple of months . It is also a physiological shock as you go into surgery feeling realatively well and come out feeling like you have been run over by a train .

I suppose she will need to weigh up the long term gain from the short term risk and pain . I can totally understand your concern regarding her quality of life especially as she has such a young family but this is also a reason to do whatever you can to stick around for as long as possible . From posts I have read on here she would be in good hands and am sure they would not be agreeing to surgery unless they felt overall it would be of benefit to her prognosis.

Love and prayers to you both. Kim x💜

My story is featured on OCA site on link below incase you are interested .

ovarian.org.uk/news-and-blo...

[cmeany in reply to Purple-iris]

Hi,

Very uplifting to read your experience. I’m glad that it went well and you had great support during recovery.

My sister already had hysterectomy omentum appendix and lymph nodes removed last year and recovered well.

This surgery is stripping peritoneum and abdominal wall.

It sounds good that you could manage the pain and are back exercising. That’s very encouraging.

There’s no way of knowing how well she will do after the surgery in terms of lengthening the time I guess. I really hope that it does and that she can enjoy that time.

I wish you a long and happy remission.

[Karencwillow]

Hi, my mum (65) was in the same position as your sister and had the radical op with Dr CF a month ago. She is a wonderful doctor, such a lovely lady Anyway mum was in surgery about 8 hours, she remembers nothing about the 36 hours that followed the surgery. She was in intensive care for 6 days as she had a pulmonary effusion so was oxygen dependant but the care in that department was second to none and you will be able to visit your sister for most of the day. she went back to the ward on the 7th day and stayed there for 4 days before being discharged. She had to then stay local for the following 10 days incase of any problems. (they stayed on site at the Hammersmith in an apartment, these are available to rent should you not want to go to a hotel) My mum would prob say the worst part was day 3/4 & the oxygen mask, the pain from the actual op was so well managed she said that honestly wasn't too bad atall! the tiredness post surgery was quite overwhelming and 4 weeks on its the tiredness that frustrates her but her op was a huge success, she had lots removed, there was a huge list of everything that'd been taken away on her letter from Dr CF back to her Oncologist. She will meet up with him in 3 weeks to discuss further treatment options for her as she is platinum resistant. Your sister will be in very safe hands with Dr CF and her team xx

[Jo-Jo1-UK]

Hi there....so sorry to hear that you sister is needing major surgery. I had very extensive debulking surgery last year at the age of 43. My pain was extremely well managed in hospital and when I came home (2 weeks later) I didn't need any pain relief at all. I was previously very fit which helped but like the others say recovery is slow. I started chemo a few months after and had numerous infections which delayed recovery. I needed quite a lot of support with the children and running the house for a some months after. Although the surgery was tough, I was very grateful for having it as I was left with no evidence of disease. I felt this gave me the best chance possible. I'm 18 months on now and doing really well. My fitness isn't quite back to what it was and I still get tired but I'm enjoying a nice quality of life. I wish your sister all the very best. Sounds like she has a supportive family around her which will help her through it. Best wishes, Jo xx

[ellseybellsey]

Hi sweetheart it took me some 10 weeks before I started feeling myself, however I think having 4 sessions of Carbo / Taxol prior to surgery and then a further 3 post surgery had a knock on effect.

I am now 13 months NED and back at work full time and enjoying life, it is major surgery but in my case it saved my life. Your sister has the love and support from you and will need this more straight after her surgery.

Hugs Ellsey xx

[cmeany in reply to ellseybellsey]

Hi so glad to hear your story and that you are back to work. Was this your first surgery- hysterectomy etc or second surgery after recurrence?

[Neona57]

I had a really huge operation and stayed in hospital for 12 days as had some complications. I didn't have much pain and felt pretty good after about 8 weeks. Then chemo started and then I felt really yuk.