Should I ask more questions?

[EchoUK]

I am 68 years old and was diagnosed with ovarian cancer in June 2006.  I had no idea I was ill until I filled up with what finally turned out to be malignant ascites and had to have several  'drains'  including one of 11.5 litres until the chemotherapy I was  given started to take effect.  I apparently had a CA125 reading of 6000 which fell to 3000 after one session of Taxol and Carboplatin and three of Carboplatin alone as I had an allergic re-action to Taxol on the second attempt and had to curtail the treatment.   I have now had six sessions of chemotherapy and am due for assessment for surgery which will be a complete hysterectomy and removal of the omentum as far as possible. The cancer has spread throughout the peritoneum due to the ascites  but is not thought to have spread yet to any major organs.
The strange thing is that since the ascites has gone down I feel very well, have put back lost weight , kept a fair amount of my hair and continue life much as usual.  I didn't expect to feel well again as I was even going shopping in a wheelchair at one time!
I haven't even enquired what stage my cancer is - apart from the usual scans, blood tests , ascites tested and a bladder biopsy I have had no surgery
Unlike many patients I have chosen not to be given any more information about my cancer than I ask for - if I feel OK I just carry on.  Am I being foolish I not wanting to know all the pros and cons as so many others seem to know every detail of their cancer??

[EchoUK]

Thanks 'AKG' - glad someone has come out in support:)

Have had my pre-op medical today and expect to be in surgery on Monday for de-bulking including removing omentum.

It feels really odd as I feel 'fit as a flea' at present so I will go into hospital feeling great and come out feeling quite the opposite.
Being in the UK I am treated by the NHS and it appears to be a totally different experience from that of patients in the US.
Apart from anything else I am happy to learn that there will be no enemas or the like before surgery as apparently that was discontinued 'some years ago'.  From what I have read on this forum the US approach is quite the opposite!

Wish me luck!

[akg]

Dear Echo,
No you are not odd ball in your approach. it sounds like you have just the right approach for you
take care

[EchoUK]

Thankyou Doctor for your response - it is a very valuable service you give.
Things appear to work somewhat differently here in England unless you are a private patient - we don't have to do the research that US patients need to do to find the right medical help. I am comfortable with my medical team, from surgeon - very approachable and down to earth lady gynaecological oncologist who is quite clear about what surgery involves - chemotherapy specialist consultant and specialist chemo nurses. My husband accompanies me to all appointments and treatments, and asking questions if he wants to. I have briefed myself through internet and books regarding aspects of the disease and treatments,
updated my will and tidied up personal affairs so that hopefully if anyone has to sort them out it will be easier! I prefer to 'jump my fences' as they come rather than fret about something that may not apply to me!
Beyond that I am looking to the future and have booked tickets for various 'events' right up to next Christmas. Just wondered if I am a bit of an 'oddball' in my approach or are there more like me?

[Annekathryn Goodman, M.D.]

Dear Echo,

It sounds like you are doing very well. I agree that surgery should be the next step. following surgery, it would be reasonable to consider a few more rounds of chemotherapy. It sounds like your question really is about how much you should advocate around your care.

I have to throw some questions back to you:
Why do you think you have not asked about your condition? It could be that you really like and trust your medical team. Many people are quite comfortable leaving the decision making in the hands of their health care providers. It could also be that it is too frightening to talk about what it going on.

Do you have a friend or family member who can come to visits with and be your advocate by asking questions and making sure that the explanations make sense? I have many patients who have delegated this role to a friend or family member. I have wonderful daughters, spouses, friends who come armed with a notebook full of questions, the list of medications, and even a tape recorder. I actually think that is wonderful and makes my patients' care better. because then we are working as a team to be sure that together we have not missed anything important.

If you are afraid to ask questions for fear that you will annoy your doctor, ask the nurse in the office. Also my personal feeling is that it is part of the physician's role to help you become an expert on your condition.

take care