Being told NO to ovarian cancer surgery

Thank you for this info, Miss Melody. I am about to have a scan to see if surgery will be possible ( after 3/4 chemos).  I really hope it will be, but it obviously depends on the MDT. It’s good to hear other people’s experiences and some really to offer hope. Thanks again.

Thanks Miss Melody,

I had womb cancer which was taken out Nov 16 but in Feb 18 it was all over my omentum. As nobody on the womb forum had anything to say about cancer on the momentum, I read that it has a link with ovarian cancer spread, so I thought I would look on here. 

Which has worked out, 'cause people here talk about it.

I've been told no to surgery, although I just accepted that and started chemo. But I want to know more. I think I will phone The Eve Appeal.

 Could you tell me what leading cancer site up north is? I am being treated by a leading cancer centre in Scotland, The Beatson.

I'm not saying my onc is wrong, I just want to know more.

Thanks

Alison xxx 

Hi Alison,

Without naming names (because my family members ongoing treatment will still be administered by the original hospital) I can confirm we are in England, not Scotland, so are under different consultants.

The Omentum can be surgically removed, but the most useful thing in all my research was the use of the ‘plasmajet’ device once you are laid open on the operating table. For any spots of cancer that cannot be cut out, the Plasmajet can vaporise them without penetrating too deep and damaging organs etc (a major reason why operations are declined, i.e. they are on organ surfaces and deemed ‘too tricky’ to remove surgically). 

From my research so far, some of the hospitals I think offer traditional surgery WITH the Plasmajet are:

The Royal Marsden (London)

The Royal Surrey (guilford)

Oxford

Bath

Aberdeen

As you are up in Scotland, below is an article from the hospital in Aberdeen, it’s an interesting read to say the least.....

https://www.google.co.uk/amp/s/www.eveningexpress.co.uk/fp/news/local/aris-new-lifesaving-machine-can-give-hope-to-patients-in-battle-with-ovarian-cancer/amp/

I’m an absolute believer in 2nd opinions given what we’ve been through. Hospitals are sorting 2nd opinions day in day out, it’s nothing out of the ordinary for them to be asked to arrange one. My advice for your own peace of mind would be to contact your chosen hospital (for example Aberdeen) and reach out to the gynae oncologist consultant (or their secretary) and ask if they would accept your case to look over in their MDT meeting. If they agree, then get an e-mail address from them and tell them the Beaston will email over a 2nd opinion referral. At that point contact the Beatson and ask them to do the necessaries. Simple as that. It does no harm to get a 2nd set of expert eyes to look over your case.

In all that we as a family have been through in the past few weeks/months I am SO passionate in now empowering others to take control, knowledge is power, and power gets results!!!

Good luck with everything xxx

Thank you Miss Melody! 

That is a lot of very useful information, it really is. My cancer is of the womb cancer type, but I would like to know if, when it has gone on to the omentum, (and a little bit on the bowel), there is any scientific/medical reason why this treatment is only used in ovarian cancer cases. 

I am going to phone the Eve Appeal tomorrow too. 

Your info is very helpful! This is why this site is do good when people share info that nobody else tells you, basically. 

Good luck with everything 

Lots of love 

Alison xxx 

Thank you Miss Melody.  

I think you're right about the importance of doing your own research and questioning "No" being given as a response and I'm so pleased about the benefits for your family.

It's also very important for people with the most common form of ovarian cancer (i.e. most people) to find out whether or not they have a BRCA mutation, but last October Ovarian Cancer Action found that 29% of people weren't being offered genetic testing.

May I ask whether there was a gynae oncologist in the original team who did not offer the surgery?  (I imagine there would have been as you refer to it as a leading cancer site.)  

Either way it seems concerning - that surgery was not offered if the decision was by a gynae oncologist, but a different gynae oncologist regarded it as a typical case for surgery, or if there was no gynae oncologist at the original centre then I would have thought they should have referred you to somewhere where there was.

We have to keep on our toes all the time to get the best or even just appropriate care, which can be extremely difficult while feeling very ill! 

Hi JayKay8

The whole experience felt like we were just a number rather than a patient (and a very scared one at that!!!!). When I questioned who was in attendance at the MDT meetings, it seemed like there was a different lead consultant in there every time!! Every review meeting was conducted by a different doctor (who the majority of the time hadn’t even been in the MDT meeting)!! They were purely a messenger!!! Never once did we meet a gynae oncologist surgeon and feel like we were personally known to anyone!!! 

That was until we got in with the team at our 2nd opinion site. They couldn’t have done enough for us. They were out of this world!!!!!!! And executed perfect surgery! 

The whole process has left me angry. However, I keep myself in check and tell myself at least we’ve got this far by being proactive. If by sharing my story it can help even only one other family, it’ll be worth it.

xxx

Hi Miss Melody

I'm not surprised you are angry but at least by sharing your story you might be helping others too.

I'm wondering how your story could be shared constructively with the first hospital, without it having any detrimental effects on your family member's care, so they don't make the same mistake again?  Often enough these things happen for some sort of systems failure, and from what you say about different lead consultants, different doctors who were effectively just messengers, this seems likely.  It sounds as if your family member's case wasn't considered by a gynae oncologist at the MDT meetings, for whatever reason, which is awful.

Could you raise your concerns with someone from the second team, and ask how best you could feedback to the original team?  It might be that someone from the second team could raise the issue with the management of the first team, but I guess that unless you make a fuss this will just be one of the things that is ideally on someone's "to do" list but which never gets done.

Another way of raising the issue might be by seeing if you could speak in confidence with someone from the PALS team and see if they have any suggestions.

None of this is your responsibility, but by feeding back your concerns in a constructive and effective way it might help you feel that something positive has emerged from your family's shocking experience.

Good luck and best wishes to you all.

Hi Miss Melody.

I was diagnosed in 2016 with gynae cancer of unknown primary. All that was seen was an enlarged groin lymph node through an ultrasound.which was bi opsied hence the diagnosis. 

Further CT scans showed "slightly enlarged " lymph node in the chest and abdomen. 

I was told that surgery was not an option as there was nothing to see to remove!

I endured 6 sessions of chemotherapy which had to be changed every two cycles as I struggled to cope.

A further CT showed "no visible signs " of cancer.

For 11 months after this ended I had another CT scan which showed "borderline reportable" lymph nodes, however as I was still unwell a PET scan was arranged.

This showed the 2 lymph nodes first seen, another in the right groin and speckles in the abdomen.

I am now undergoing more chemo and struggling again after 2 rounds.

How I wish I had seen your letter earlier. Maybe we should have pushed for a second opinion.

By the way we are in the North of the UK.

Good luck to everyone and thanks for your post.

Hi Miss Melody

Hi Miss Melody

It sounds like my mum is in a very similar position to your family member, and we also live in the north of England.  I've tied to send you a personal message, but think you have to be friends to do this, so I've sent you a friend request.  I'd like to discuss hospitals with you (privately) to see if we're using the same ones, if you're willing.

Thanks.

Eeyore Blue