Is it worth going through debulking surgery? - My Ovacome

My Ovacome

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Is it worth going through debulking surgery?

Kez150 profile image
Kez150

Hi all, I'm a newbie after some advice please. (Apologies for the long post)

4 weeks ago my Mam (68 yr old) was told she has a large pelvic mass (14cm) most likely oc after she presented in hospital with ascites. Histology of the ascites confirmed this.

Yesterday I took her to see the gynaeoncologist who will perform surgery on her. After almost 2 hours going through everything (my Mam is quite high risk for surgery as she has cirrhosis of liver from 10 year ago) it was decided they will go in laporascopically for a good look in case of any spread (luckily no spread whatsoever shows on CT scan) and if none found they will open her up for debulking there and then (12 October) with chemo to follow.

After a month of uncertainty I thought great we are finally getting somewhere even though I had hoped for the surgery to be sooner. However I spoke to my Mam today and she is now wondering whether to bother going through with the surgery and treatment thinking she would rather have a few months with a decent quality of life!

I have told her only she can decide what she wants to do but as there is no spread showing on scans that I think having the surgery etc would most likely put cancer into remission and she could have many years to live with a good quality of life. I am shocked by her response, from day 1 she has been so accepting of this awful disease saying she has had her life and she would rather it be her than someone much younger who still had a life to live.

What can I say to convince her to have this surgery? I know it is her decision but it's as if she thinks she will be going through a massive amount of trauma just to die at the end of it anyway, when my view is that this surgery could potentially rid her of this disease for many years or even for good. Had they found metastasis I may have agreed with her but so far things are looking very positive for her.

We are all so drained at the moment with all the worry and I just do not know what to say to her.

Would you all agree that the surgery would be worthwhile? Or am I being selfish. Please could you share your experiences and offer any advice!

Many thanks,

Kerry

21 Replies

Hi lovely and welcome,

I support someone with OC when she was told initially the doctor said she will survive 6 months with chemo no operation no other options, she had chemo and after 3 Carbo/Taxol they added Avastin after 6 altogether she had a letter to see the surgeon for debulking surgery he was surprised she was still here that was 2 and a half years ago she has reoccurred twice since then she had 4 Carbo/Gem and has recently finished Carbo/Caelyx. I would advise YES YES YES have the operation it's better out than in xxx

Kez150 profile image
Kez150 in reply to CallmeMum

Thank you. Better out than in! My thoughts exactly, I just want it out of her.

CallmeMum profile image
CallmeMum in reply to Kez150

We all want the best for the people we love although there's no guarantee that once classed as NED (no evidence of disease) it will stay away 68 is still very young in this day and age to think shall I just enjoy the last few months? It's gotta be worth a go if nothing else xxx

Hi Kerry

I had debulking surgery in December 2015 followed by 6 cycles of chemo. I was 64 then and although the chemo was a rough ride, I have now recovered and am fitter than ever. I am, as far as I know, cancer free (although I'm waiting for a scan to check) and really enjoying life.

A diagnosis like your Mum's throws your emotions all over the place and I can understand how she feels. Her medical team wouldn't suggest the surgery if they didn't think it was worthwhile. Perhaps a longer discussion with her medical team or a talk to her CNS (Clinical Nurse Specialist) where she can voice her fears would help? She could also talk to the Ovacome nurse.

Sending a big virtual hug your way! I wish you all the best-keep posting and let us know how she gets on.

Lou xx

Kez150 profile image
Kez150 in reply to luluw

Thank you for your reply. I truly hope your scan results bear good news for you. I will share these comments with her and hope it sways her decision.

Can I ask which was worse to go through, the surgery or the chemo and which were you dreading the most?

luluw profile image
luluw in reply to Kez150

The chemo was worse, but I had a lot of side effects. Not everyone does. I recovered from the surgery really quickly with very little pain although I was dreading it. I had surgery for ovarian cysts back it the early 1970's and it was grim. Modern surgical techniques are amazing. My husband has recently had surgery for oesophageal cancer, an operation that is so complex it wouldn't have been possible without recent advances. He is recovering really well, partly because his surgeon told him to get as fit as he could before the op. Good advice!

By the way, the scar from my recent surgery is almost invisible now, but you can still see the old one!

love to your Mum

lou xx

Kez150 profile image
Kez150 in reply to luluw

Thank you for your reply. I think the chemo will also be the worst part for my mother. We have also been told to get her as fit as possible before surgery, even giving us a load of protein drinks to help her gain some muscle mass! I think the only weight on her is from the ascites!

My best wishes to both you and your husband xx

Hi Kerry

Can understand your concern . It's so difficult as we only want the best for our loved ones but it has to be their decision in the end . Looked after my mum when she was diagnosed with congestive heart failure and you have to tread very carefully .

I was diagnosed at age of 53 stage 4 and inoperable so needed chemo first to shrink tumours , fortunately it was successful and they could then operate but I remember feeling very scared . Also remember asking if it was worth going through the extensive surgery when they told me at stage 4 there is a good chance the cancer will come back .

Your mum is probably overwhelmed and still in shock and has to process her diagnosis . I had radicle debulking surgery ( 8 hours ! ) and then 2 more chemos . Am now NED and enjoying life again ( surgery was last November ) .

There are many ladies on here getting second opinions to find surgery ( where they have complications ) so I would advise that if your mum is being offered surgery ( despite her other health issues she should seriously consider it . Great advise for her to discuss with Ovacome helpline and again with her CNS . If she needs to discuss again with her team they should do this.

I coped well with chemo and apart from aching legs and thinning hair ( wore cold cap ) had little side effects and in all honesty my surgery was much worse . But was much bigger and more extensive than I think your mum needs. I had complications due to spread under my diagram and some breathing issues . But now I am almost a year on I would honestly go through it again tomorrow if it meant having a better chance of fighting this awful disease and spending more time with my family . I paid for a private app (£250) to discuss my planned surgery with another specialist oncology surgeon who put my mind at rest that it was the right thing to do .

Maybe your mum just needs to talk through her concerns but at the end of the day all you can do is provide her with all the information for her to make her decision.

Best wishes and keep in touch love Kim x

Kez150 profile image
Kez150 in reply to Purple-iris

Thank you so much for your reply Kim. I am so pleased you have NED after what you have been through.

I am so pleased to have found this site and all you lovely ladies, you are all an inspiration to many.

I am going to see my Mam tomorrow to show her this site and encourage her to talk this through with her CNS.

Take care, Kerry x

Kez, I can understand your mother feeling the way she does. This disease diagnosis is horrifying. It takes awhile to learn your options and make decisions. Give your mom a bit more time to consider the possibilities. At diagnosis I was convinced I would rather just "naturally" let the disease take it's course rather than "suffer the treatment". The decision went out the window very, very quickly as I could no longer eat and breathing was becoming difficult. I WASN'T READY TO DIE! I decided since, without treatment I would suffocate within days, that I'd rather TRY TO STAY ALIVE. I figured I was so ill I had nothing to lose. I've now been in pathological remission for 13 months and intend to go right on living every single day. Hugs to you and yer mum, Tesla in Seattle

Hi Kez, my mum was like your mum. My mum was suffering with depression & couldn't see anything good from having any treatment. I wanted her to have chemo & I was hoping that some where down the line surgery but she refused it all. She was given 6 months my mum lasted 6 months.

When I found out I also had oc I decided to take everything including surgery. All I can say thank God I did.

I know where you are coming from but my mum had made her mind up & no one even her favourite daughter was going to change her mind.

The fact the cancer hasn't spread I would try & convince her life is worth living. Please keep us up dated. Take care Cindyxx

Hi Kerry, This is a hard one to give advice on I will tell you my history,I'm 72 have serious 3 OC

when I was diagnose my family were told that I would not see the year out, it will be 3 years this October. It,s not always been easy but I've manage and still kept my part time job.

I'm now on my 5tth line chemo in three years and this treatment is going well.

So if you ask me am I glad I had surgery yes I am.

It does sound from your post that surgery would be of benefit, she needs to talk with her surgeon again this might put her mind at rest also maybe a second opinion from a oncology surgeon before she decides..give her my pest wishes Lorraine xx

I was diagnosed in April 2014, stage 3c clear cell ovarian cancer removed 2 lb mass, debulking 2 ND surgery removed 15 lymph nodes and finished debulking. 18 rounds of chemo in 14 weeks 14 of which were stomach wash. Stomach wash chemo is uncomfortable but didn't hurt. It supposed to add 18 months to 3 yrs onto your life and keep reoccurring at Bay. I'm a fighter I say fight for everyday. Best regards no matter what she decides. Liz

Hiya, I'd suggest she do the surgery, I had a very fast growing cyst which encapsulated my cancer, it grew so very fast from being apple sized to 6 month pregnancy gestation size over a 6 week period, the surgery literally saved my life. The chemo was an added bonus. It's amazing what they can do now, all surgery carries risks but the upside can be so very good. I'm still alive 3 years on. I had other complications too, I had an embolism and hypercalcaemia which the anaesthetist took on board, I was really very well looked after as I'm sure your mum would be. I think we have to grab the opportunities given. If her doctor thinks the surgery is really viable then she should have it, it is, however, her choice though.

Good luck making your decision hugs and love ❤️Xx Jane

When I was diagnosed with oc in 2008 aged 58, I convinced myself at first I wouldn't have long to live whatever happened, & thought I didn't have the courage to have a big operation. However, after thinking about it, I had the op, thinking that if I did, there was a chance that they could get rid of it, or at least make my situation much better. They did remove the thing, & I went back to work. Fast forward 9 years - I have had recurrences. At the beginning of this year, I was advised to consider having another big operation. I was 67, & the surgeon said the surgery at the time was risky but 'doable'. At first I found the prospect daunting, knowing some of the risks, but decided after some thought to go ahead. After a 7 hour operation, he told me he'd removed all the cancer he could see. I am now feeling well - better than I had felt for some time, & glad I went for it. I don't feel my life is over yet, & I'm now 68. I still have checks - have a scan in 2 weeks time, & an oncology appointment the following week. Di

Thank you all for you valuable input.

I hope all your results are good.

My mother is now feeling a little more positive about the surgery but is really uncomfortable with ascites at the moment. I think this is the worst thing for her, especially as her surgeon said she may still have the ascites after the op until she has chemo and she is fed up with trailing to the hosp to get drained.

She was initially drained middle of August where they took 6 litres. 3 weeks later we had to have it drained again as she was so uncomfortable and they took 12 litres from her. It has now been 1 week from then and she is needing it done again. I have just arranged with her CNS to get it done on Monday morning and she's advised us to try to pencil in another drain appointment for the end of sept.

Do any of you wonderful ladies have or have had similar issues with ascites? Is there anything we can do to slow it down or to ease it?

Take care all x

kat98116 profile image
kat98116 in reply to Kez150

I had terrible ascites, which actually led to my initial diagnosis in the emergency room back in May. I looked 6 months pregnant. It was decided that they would do chemo first before surgery. I had 4 rounds (12 treatments) or carbo/taxol, and by the third or fourth treatment the ascites was gone. Also the tumors had shrunk, which put me in the best possible shape for surgery, which I had 3 weeks ago. Have they considered some chemo first before the surgery to help manage the ascites? I certainly don't know if that's appropriate to your case, but my onc told me chemo was the only way the ascites was going away. So sorry for what your mom (and you) are going through. I'm 63 and my daughter is my primary caregiver, and it's rough for her. Bless you for being there for her.

Kez150 profile image
Kez150 in reply to kat98116

Hi Kat,

I don't think they have considered chemo first although they are aware the fluid is building up fast. We have to update the surgeon (gynaeoncologist) if she has any drainage or if anything else arises, so perhaps they may reconsider her treatment when they realise she is going to need almost weekly draining. It's just quite difficult as her CNS is here with us in Carlisle, when she needs drained we have to travel to Whitehaven (just over an hours drive away) and her surgeon/surgery is at specialist gynae cancer centre at Gateshead (about an hour and half away), so all the travelling is tiresome especially for my mother when she is so uncomfortable from the ascites.

I hope you are recovering well from your surgery. Do you need to have further chemo if you had it before surgery?

Take care, Kerry x

CallmeMum profile image
CallmeMum in reply to Kez150

Hi lovely,

Always best to try and get chemo after surgery to mop up any remaining cells unfortunately for my special person her Onc failed to do this and she had a reoccurrence 6 months later I do wonder if she'd have had more chemo or a stomach wash if she'd have reoccurred so easily.... xxx

kat98116 profile image
kat98116 in reply to Kez150

Ugh sorry about all the traveling for treatment. I can only imagine how this adds to the stress. I am recovering very well from the surgery; lucky for me it was robotic and less invasive that the front cut. Yes, I will have 6 more rounds of chemo starting in 2 weeks to "mop up" the speckles of cancer (a term used by my surgical oncologist) that are still around the omentum. It's a lot, but he is very research oriented and says that gives me the best chance for a cure. I'm stage 4 PPC. Keep us posted on your mom and hang in there.

Caroles1 profile image
Caroles1 in reply to Kez150

Hi Kez,

I was diagnosed in August 2014 and ascites were terrible, I lost masses of weight and looked very pregnant.I kept being drained over a 3 week period before my op.I was diagnosed as 1 c, after the op I had 6 months carbo/taxol chemo and have been in remission since.

I didn't find the op or the chemo that bad to get through and I consider myself very lucky.

Hope that helps to put a positive spin on it all, I was 58 years of age.

Carole xxx

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