Being told NO to ovarian cancer surgery

We have actually had our 1st review meeting today at the original hospital (she is now 3.5 weeks post op) and we did have the opportunity to feed back our concerns as to why surgery wasn’t offered by them, yet was done as routine surgery 200 miles away. I’m sure the Dr that held the meeting today was half expecting us to say something - which we did. Her response was that it has already been fed back to the MDT team that successful surgery was executed at another site, and that our family members case will be a ‘learning point’ to take forward. 

We could do more like approach PALS, however, I feel for our own sanity we now have to accept what happened as ‘our journey’. I am in no doubt we ended up having the surgery at the right hospital for us in the end anyway (because of the Plasmajet) and without a doubt, the best surgeon carried out a faultless operation. So all in all, we are delighted with the outcome.

I also just wanted to take a moment to mention I am not a medical expert, and I’m in no doubt there will be times when operations cannot be offered, my only advice can be is that if you are told NO, organise a 2nd opinion at a hospital of YOUR CHOICE so you know you’ve done all you can.

Good luck to you all xxx

Hello I have just been reading your posts on here - thanks for sharing. I just wondered if I could privately message you? My mum had her scan today - we are also in the North of England and I just wanted to ask a few questions. many thanks xx

Hi, so nice to read a good story like this! My Mam was told originally when she was diagnosed in Dec that she was too unfit for an operation (she is 65) this was following on from a fitness test carried out at the QE hospital in Gateshead. She is now being treat at The Freeman in Newcastle and is going through chemo, they have said that even at the end of the chemo treatment they think it is highly unlikely that she will be fit enough for the de-bulking operation. It is just a disappointment as I know that the likely hood of chemo alone getting rid of the cancer is slim. 

I know that the operation is quite a big one and the recovery process is hard. 

I am just wondering whether there are any success stories out there where people have just had chemo alone. My Mam’s tumours are on both ovaries and has spread to the abdominal wall.

Thanks

Hi tealribbon21,

If you don’t mind me asking, what exactly was it about your mums health that’s holding her back potentially from the surgery? If she is able to influence these factors, I would have hoped the hospital would help her put a plan in place so she can do as much as she can to prime herself for potential surgery?

xx

Miss Melody, I have a very similar story with my own mother. I would like to message you privately and have sent a friend request on here. My mother is now 8 months post surgery and 2 months post chemo with the '2nd opinion' hospital (who by the way had her on the operating table 3 days after seeing her in clinic). I would love to share my experience with you and hear more about how you fed back to the original hospital. 

Best wishes

Caroline

Hello Miss Melody

I read your post a couple of months ago. I have ovarian cancer, diagnosed about a year ago. Long story, but didn't want surgery after first chemo, tried to get a second opinion and referral for plasma jet, which didn't work. Meanwhile the cancer came back (or probably had never really gone) so now I am on my second chemo course, which seems to be better than the first one. That will last 6 months roughly in total. I have been told that I won't be able to have another operation as they view second and subsequent chemos only as palliative...

I am very interested if you are able to tell me in which hospital your relative had the surgery so that I can contact them nearer the time.

Thank you so much

Best

Dieneke 

Hi Miss Melody, thank you for writing about your experience.

I was told that I would probably be offered surgery after my third chemo, I am now being told I must have another chemo before surgery even though there was no sign of the cancer ( originally in both ovaries and spots on the lining of the abdomen) at my last ct scan.  I don't know why they are giving me chemo again when the cancer has shrunk to nothing and my CAS125 is down from 400 to 11.   It is good to know that I can ask for a second opinion and that is what I will do if not offered surgery after my fourth chemo.

Thank you for sharing your experience, all best wishes, Penny

Hi 

Thank you so much for this. Reading your post is like reading my own story. I have been told NO to surgery because of the cancer being widespread in the abdominal cavity and particularly where it adheres to the bowel. I am very recently diagnosed and am still in the throes of being processed before chemo.  However, they have already warned me that surgery might not be possible even after chemo  

I would be most grateful for a little more information from you if you would be so kind.  To that end, I am sending a friend request. 

I am in the East of England.

Many thanks again for your illuminating post..  I do hope your family member is now much improved.