Any advice on best questions to ask oncologist prior to last round of Carboplatin/taxol next week?

[hpops]

I'm 49 and was diagnosed with Stage 3C ovarian cancer last summer. I've been on 3 weekly treatment since September last year and have struggled much more emotionally than physically I would say. Partner of 25 years went off with lady friend at beginning of 2012 which was devastating. I have fantastic support from friends and family but need advice as to how best to look after myself going forwards. I plan to ask about the ibuprofen ... really interested in this. Any other key questions you can recommend that I ask? Usually have a long wait at clinic and what feels like a too brief consultation. I want to go armed with key questions!

[Hidden]

I am so very sorry with what you have been going through, emotionally and physically you must feel really drained. You are right about the long wait and then the brief time you actually spend in with the consultant, speaking from experience the longest I have spent there has been eight minutes and the shortes only three in that time (the shortest I was given a very bad prognosis having then had a recurrence) and came out with an awful lot of unanswered questions... so I requested a second visit to discuss what we hadn't discussed the first time around......I wrote everything down and wasn't going to be fobbed off with unanswered questions..... so asked blunt questions like how long In his opinion I had left ...and whether there was a possibility of another operation...and I stuck to each question in turn and felt I came out feeling more empowered...I don't know what you want to ask but as they enter your brain now jot them down and then put them in order before you go. Best wishes love x G x

[ChrisH]

I always try to have a list of things I need to ask, as I tend to forget something otherwise I forget something! I usually have a wait to see my oncologist, but when I see the gynaecologist I usually see her early, as we get there early she sees me waiting & if no one else is there see me straight away....I think she figures she can get ahead and spend more time with anyone that needs it! I have my first checkup since round 2 finished in a week, so I shall be preparing my list this week.

All the best

Love Chris

[Hidden]

Hello

I think a more significant consultation is the one you have after the post-chemo CT scan - by that time you will be a few weeks post-treatment and will have a better idea about how your body and mind are coping.

I would advise only asking questions to which you want to hear the answer.

After my most recent treatment, I asked about what he thought was in store for me next but said I did not want to get into discussion about the longer-term scenario. We all have different information needs, and it's worth thinking about what those are before such a discussion takes place.

Write things down though, as sometimes they swoop in and out of the room before you have a chance to think!

Oh, and if you end up with a registrar and are not happy with an answer, then insist on seeing the consultant.

Hope this helps!

[drdu]

Hi hpops.

Yes, ask about ibuprofen or aspirin. Also your latest CA125 result, if it is relevant to your type of cancer. They will probably want to see post CT scan, which should be a few weeks after your last chemo, but no harm in asking about ibuprofen etc now, and making them think about it. I guess you have seen my blogs. Suggest you print off any useful references from them, etc.

Good luck, and don't be too easily put off. Oncologists tend to keep saying there are no trials yet in ovarian cancer, but if we all wait for trials it may be too late for some. I realise my own experience re ibuprofen is still "early days", at 16 months after the latest I was expected to relapse, (22 months in remission) but it is impressive, none the less. If your oncologist is non-committal, then speak to your GP. As my GP pointed out, you could be on ibuprofen as a painkiller anyway, as a cancer patient. GPs can be more open-minded than oncologists, but of course the easy answer for any GP is just to say, oh I can't do that unless the oncologist says I can, and then it gets difficult. Find the most sympathetic GP you know of in your practice, often a woman! Best to discuss with a GP, rather than go it alone, as omeprazole really needed when using ibuprofen longterm, to protect the stomach. If they are only amenable to aspirin, then maybe you have to go for that. There is a bit more evidence about aspirin, but 150mg daily may be better dose than 75mg - the jury is still out on that.

All the best.

Eileen xx

[hpops in reply to drdu]

Thanks, Eileen - useful advice. I shall go prepared. Funnily enough, I used to seek out the female GPs at my practice, but was dismayed by what felt like a total lack of empathy. The most emotionally intelligent GP I have come across there happens to be a man!

[drdu in reply to hpops]

Glad that a man is empathetic in your practice. Pity about the women! Good luck. By the way if you check out my blogs again there have been some updates, and some oncologists are prescribing or agreeing to ibuprofen and omeprazole, or aspirin, as well as someGPs. So we are getting somewhere, and maybe it will be easier than you think.

E xx

[Whippit]

Dear HPops

You've had a serious amount of trauma in the last year and really there's no sticking plaster in the world that heals the devastation caused by a broken relationship. If it's any comfort at all could I mention that time does heal but not necessarily very quickly That, and being in a position to tie off ends, and to work towards independence and financial security. No wonder you feel you've struggled more emotionally than physically. I'm sure the backdrop to your diagnosis was far more challenging emotionally than anything else you've had to deal with.

I think in your situation I'd want to go in to the oncologist and tell them it's not enough to be looking after the problems in my abdomen - I need help with my head and my heart too! You might guess from this that I've been in your situation but fortunately for me it was some years ago. Sadly the medical profession and support services are compartmentalised so it may be you need to ask questions of a whole range of people to sort everything out.

I think Bellabee's advice to only ask questions of your oncologist you want answers to is excellent. I for one can only deal with bite-sized chunks of information and I was happy not to ask too many questions. I've never asked 'how long can I expect my remission to last' or what is the next stage because I take the view I need to operate in the present and deal only with the most pressing issues. This 'head in the sand' attitude has stood me in good stead since diagnosis as I've been able to enjoy life and have had very few side-effects.

I'm glad to hear you have such supportive friends and family. I guess the advice you need to help you 'go forwards' might be as much from them as from the oncologist. In some ways this last appointment might well be one where you've exhausted all cancer-related questions at previous appointments and feel relatively comfortable going ahead with that aspect of things. The next step is the post-chemo six weeks check which will give you a lot more detail as to how effective the chemotherapy has been this time and what the next steps are. I'm hoping beyond all hope that the next step is hearing that the treatment has been a success and the advice will be to enjoy a good long remission. Hopefully you'll come to see this opportunity as a door opening on a new and fulfilling way of life for yourself.

Please let us know how you get on.

Love Annie xx

[Hidden in reply to Whippit]

Hi Annie,

Like you after my first diagnosis and treatment...I didn't ask how long my remission will last, because it's like asking how long is a piece of string, but on a recurrence of cancer I did ask my oncologist's his opinion on how long I had to live, it is a very different scenario when you are told there's not much they could do it is now incurable...I needed to know then.... to prepare myself and my family,we are all different.... I couldn't stand to bury my head in the sand...but this knowledge has stood me in good stead as well, because to me every day is a bonus... but I am not a worrier and like to face things head on... so I guess there is no right or wrong way and I too would advice to only ask the questions you want answered...some of us want to know everything others don't... simple!

Lots of love x G x

[hpops in reply to Hidden]

Thanks, Gwyn - good advice. It is helpful to have different people's perspectives as it makes you think about the best way forward for yourself. It all adds to my sense of being a bit more proactive rather than just letting it all happen TO me. I have often thought of the different stages I have gone through after the initial diagnosis...a bit like stages of grieving perhaps? I am in a place now where I am ready to pick up the reins.

Thanks for your thoughts.

H xx

[Whippit in reply to Hidden]

Dear Gwyn

I completely agree with your approach and will hold you up as a model when I reach the stage when they say there's not much they can do for me. At that point one has to be pragmatic and let the family know exactly what to expect. I see this as two different phases in our disease.

What is really brilliant is that you've been given this prognosis but still enjoy your family and your life. I think this is something to shout about because generally people get the impression that when you're told 'there's no more to be done', it's chips. You're a shining example that we can continue for a good long time and have happy and fulfilling lives.

May this happy state continue for a long long time Gwyn.

Loads of love xxx Annie

[hpops in reply to Whippit]

Hi Annie, thanks very much for such a comprehensive reply. It felt really good to have someone understand the added emotional complexities from having had a long term relationship break down. I have had a series of counselling sessions after a referral by the clinical nurse specialist - these have been really helpful but I am not out of the woods yet. I do think that your approach of not asking too many questions and dealing with the resulting 'bite-sized chunks' of information is the way forward for me. I learnt that going too far forwards with information or even imagining possible scenarios was just too overwhelming and had a debilitating effect. Thanks for your positive thoughts... I'll keep you posted.

H xx