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Share your dilemmas and get honest opinions from other Mumsnetters.

What questions to ask at ovarian cancer diagnosis appointment?

19 replies

BastardCancerBastardCovid · 10/12/2020 16:33

My mum has her appointment next week with the oncology team. I'm trying to help come up with useful questions, and have some already but thought the collective wisdom and experience of MN is a good place to get useful tips on what to ask.

I believe the cancer is stage 3 or 4. Any guidance would be very much appreciated.

My educational background is in healthcare, but a very different kind of field (think ethics/policy/public health side of things rather than clinical - I'm certainly no doctor!) but I am comfortable with terminology and the academic side of it. So ideally, I would like quite detailed information so that I can begin to look at research papers, and for possible clinical trials etc.

Many thanks for any suggestions or signposting.

OP posts:
Notdeliasmith · 10/12/2020 16:50

I would say (gently) to be mindful that the appointment is likely to be overwhelming for your mum, and it might be best to leave questions about clinical trials etc. till after things have sunk in a bit. It's easy to get bogged down in Those sort of nitty gritty details like anatomy, and it might lead to your mum feeling like she doesnt understand.

Its probably also worth asking your mum.prior what kind of role she might like you to take. My mum very gently pulled me aside after an appointment I supported her in as I can be very "let's get the job done", detail focused in appointments and have had to learn to let dm take the lead as she felt a bit "rail roaded" and like the conversation was about a medical problem to be solved between me and the doctor and she was left out/ a byproduct.

It's likely to be a bit of a whirlwind so ask if you can take notes (can be helpful to remember things like do xyz for 6 weeks, then do x)

In general I would say get good written information where possible. Take any leaflets you can!

Find out where you can get info from, do they have a specific number you can call? Often cancer diagnosis links you in with a cancer nurse so try and get their details.

Lots of the questions will be dependent on the info given

DuckyMcDuck · 10/12/2020 16:55

Would second to try and get a contact name and number before you leave as you are bound to have questions and google is definitely NOT your friend.

Isadora2007 · 10/12/2020 16:56

Yes I agree with @Notdeliasmith that your role here isn’t to find out about clinical trials or to be anything other than a support and advocate for your mum. What does she want to know? What’s important to her? For me, minimising time away from him was vital as I had young children whose lives I didn’t want to disrupt. But other people wouldn’t have had that focus. You’re trying to intellectualise as you are probably also in shock and scared. But those emotions are okay and valid. And for your mum too. So speak to her and then do as she wants. Flowers

Saz12 · 10/12/2020 17:01

I think you need to be led by your mum; there may be things she doesn’t want to hear yet, so you need to bare that in mind.
Take a pen and paper, take notes.
But if you can get a point of contact for follow up questions that will help.

Vermeil · 10/12/2020 17:07

In my experience, as the patient rather than the one accompanying, your most useful role is being there to take in what’s said about whatever treatment regime they propose. Sure ask about clinical trials, but you’ll probably find that if she qualifies for any she’ll be approached anyway, they’re usually very keen to recruit people for any they have going, especially if it’s a research/university hospital.
My best advice is to be aware that some specialists have the bedside manner of a shitty thistle, others are great and do all they can to help and explain, but some tend to forget that they're dealing with a person, not just a tumour. Cancer is as hard mentally as it is physically, ask for a referral to oncology psychology.

BastardCancerBastardCovid · 10/12/2020 17:08

Oh I absolutely am 100% following her lead and just want to do whatever she needs.

Sorry - I didn't mean to suggest asking questions about any clinical trials or anything at the appointment.

Rather, I meant questions to establish exactly what type of cancer it is, whether it is hormone sensitive, that sort of thing. So that then I can make sure that the hospital are giving the fullest range of options possible, including giving options of anything like a compassionate use drug or a clinical trial if it was relevant.

I'm sure the hospital are going to do their very best, but at the same time, not all hospitals offer the fullest range of options or the most advanced treatments. In my personal experience and professional capacity I have also witnessed some pretty shit behaviour from consultants, quite frankly.

So I just want to make sure she is given every opportunity possible. Sorry, my mind is racing and I'm kind of offloading here.

OP posts:
DragonMamma · 10/12/2020 17:11

@Notdeliasmith has summed up what I thought reading your post.

If you’re like me, you like as much information as possible and then try and fix the problem. But the appointment is for your mum, not you. You have to be guided by her and how she wants it to go.

I can’t imagine how overwhelming it will be for her so she may want to think about clinical trials (or not) once she’s had a chance to digest it.

BastardCancerBastardCovid · 10/12/2020 17:15

My best advice is to be aware that some specialists have the bedside manner of a shitty thistle

This made me snort Grin thank you for the much needed smile!

OP posts:
BastardCancerBastardCovid · 10/12/2020 17:16

Thank you everyone, some really helpful stuff here.

OP posts:
Iremembertheelderlykoreanlady · 10/12/2020 17:18

Sorry about your mum's diagnosis OP Flowers

Are you sure you will be allowed to accompany her? My dad was diagnosed with cancer earlier this year and was told that due to covid no one was allowed at appointments with him. I hope in your case it is allowed.

joystir59 · 10/12/2020 17:20

My wife was diagnosed with 3c clear cell Ovarian cancer Oct19. She never wanted to ask about prognosis and so we never asked- I let her be in charge of what was asked throughout as this was her body her illness and she handled it in the best way she could which was to be optimistic, cheerful and positive. And not ask too many worrying questions. I made sure I listened to all that was said about the proposed treatments, timings, where they would happen, who to chase things with. I took care of travel, logistics, dog care arrangements, small she had to do us on was getting through the treatment and enjoying the good days.

joystir59 · 10/12/2020 17:21

Due to covid eventually her consultations were over the phone.

Buscircles · 10/12/2020 17:25

I would come along and make notes. I had ovarian cancer in 2014 abs certainly wouldn’t have wanted anyone asking questions about histology etc.

Be an emotional support for her and write it down as she’ll struggle to take anything in.

TenShortStories · 10/12/2020 17:25

If you aren't allowed in due to covid, you may be able to have your mum call you on speakerphone so you can hear the consultation and take notes (and possibly ask a question or two at the end).

If you can go, don't forget a notepad and pen to get down key points, names of drugs etc.

crazycatladyx · 10/12/2020 18:00

I'm currently undergoing cancer treatment (possibly OC, not sure of histology yet).

I think the first thing to ask is to your mom, what does she want to do? Does she want clinical trials etc? What does success look like to her? This might sound like it has an obvious answer, but from my experience, everyone has a different vision of it.

Next would be what options for treatment there are. Not just to extend life, but to maintain quality of life too. Is surgery an option? Where is surgery undertaken? What other teams are involved? You say its stage 3/4. If its spread, has the colorectal team (for example) looked at her at MDT?

Get the name and details of the CNS (allocated oncology nurse). They will be your link to the teams and really useful at coordinating services / chasing tests etc. Also worth knowing the day that gyny onc hold their MDT. It will give you an idea of when to expect calls / plans.

Finally, I (and a lot of patients) don't like talking about stages. So far, I'm not interested in talking about prognosis, likelihood of cures and timeframes. The doctors tend to be led by you in these appointments. If you ask about times, they will probably be brutal. Think carefully about whether that would be helpful to your mom before the appt.

Wishing you both the best of luck. I can highly reccomend Ovacome and Target Ovarian Cancer for support.

florascotia2 · 10/12/2020 18:05

OP my elderly mother was diagnosed with late-stage incurable cancer a few years ago.

I don't wish at all to sound pessimistic or negative, but it all depends on how old and ill your mother is, and how far her cancer - I am so very sorry to hear about that - has progressed. I very much hope that the doctors etc can do something positive for your mother. In which case, as others have said, you should at the moment take a back- but supportive - seat, take notes, and get contact details for answering the inevitable future questions. And then be able to go through, slowly and gently, in her own time and place, all the info with your mother. I'm not saying that your mother is not intelligent or capable. But shock - and severe illness - really takes its toll.

But just in case - heaven forfend - there is not much physically they can do, can I please share my experience with you?

My mother's consultant was a whizz at medical expertise and diagnosis but- as others have suggested - psychologically pretty brutal. After saying that my mother was too old and frail to operate on and that chemotherapy would not be very effective - all, objectively speaking, true - he simply said that 'we'll have to let nature take its course'. Then he - in effect - closed the file.
The whole consultation lasted maybe 7 minutes. My mother, naturally, was totally shell-shocked.

We were then passed to his very charming nurse assistant who - in a lovely and polite and friendly way - did the paperwork to discharge my mother into the community for terminal care.

And - this is the point of my story - my mother simply could not get her head around this. She did not understand the organisational gulf that sometimes exisits between hospital diagnosis and hands-on care or support in the everyday world. To my mind, that is really, really important.

In her last months, my mother kept saying 'Why can't I see that nice nurse again?' (Such a meeting would have been of no clinical use but would undoubtedly have been psychologically supportive.) But, according to the 'system' (not criticising, just describing) the consultant and 'nice nurse' no longer had any responsibility for my mother's care. My mother's GP was excellent in organising painkilling medication and whatever what help she could send, but the community nurses and the community matron were most definitely not. My mother was 'assessed' so many times by nursing people with clipboards, but none of them ever did anything much hands-on to help. The Macmillan Nurses were involved, but sadly the local Macmillan nurse was ill herself and had not been replaced. So they visited twice in four months, I think.

All this may have been because we paid for living-in care for my mother. So she was warm and fed and comfortable and had someone to call on during the night. Very, very expensive, but it was what she wanted. Sadly, it turned out that she could not die at home. Her GP visited one day - which she did (well done her) very, very regularly - and decided that the time had come for hospice care. The hospice was a lovely place. Had my mother been willing to engage with it much earlier the people there might have helped her a lot. But she was not. It was hard to encourage her, but if the time ever comes for this for your mother, then I would encourage her to do so.

I am sorry to ramble on. Even after several years, this is obviously still raw. I think what I am saying is the biggest support that you can be is to help your mother engage - in whatever way is best for her - with all the local curative (clinical trials etc) if relevant BUT ALSO later-stage care services in a way that feels good for her. These will vary from are to area. It is often not easy to find out what's available or what would be best for any patient. You, as someone with NHS experience will be much better placed than most to do this.

Jobsharenightmare · 10/12/2020 18:10

Hi OP.

Sorry to read your mum has cancer.

I would ask:

For invasive treatment, is this really necessary?
What are the risks of the plan you are proposing?
What happens if we do nothing?
What would you suggest if this was your relative?

Best of luck.

Jobsharenightmare · 10/12/2020 18:10

Oh and lastly, are there any alternatives?

BastardCancerBastardCovid · 10/12/2020 19:39

I am so very sorry to hear of others who are going through or who have gone this process, either themselves or with a loved one. It's really, really shit.

Thank you for all the comments, they are very helpful.

My mum is only in her 50's and otherwise in good health, does regular exercise etc (well, she did before being so unwell) and is a healthy weight so I hope that will be in her favour - if surgery is an option, she should be a good candidate in terms of her general health for a big operation, I think.

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