Post Op Appointment with Oncologist - what to ask??

Hi Rackelsi

sorry to hear you are feeling anxious. I was diagnosed stage 3A as spread to one of my ovaries. They were worried as to whether it had spread to a lymph node as MRI had highlighted a prominent but now enlarged lymph node, but PET scan didn’t show anything up. They told me they had removed everything in op, but no one can tell f there are microscopic cells, and hence why the further treatment for me. At each stage they have told me there may be no cancer cells left in my body.

They have stressed the further treatment is for preventative reasons. I’m not even thinking survival rates, but doing everything I can to prevent it coming back.  My background is a statistician, and my oncologist when he knew this referred my to a worldwide trial re the treatment I am receiving, and when I looked I was surprised at how few cases were used to come up with the stats, and treatments are improving all the time, so some of the survival rates are now out of date.

dont worry about missing any questions tomorrow, you will have the opportunity to ask any other ones you think of afterwards. They know it can be a lot to take in at the time.  For me, and not saying this will be the case for you, they proposed 25 lots of radiotherapy with two lots of Cisplatin on days 1 and 22 of the radiotherapy. They then said 4 further lots of chemo Paclitaxel and Carboplatin every three weeks.  At my first meeting with oncologist, I asked for the further chemo to be kicked into the long grass and just discuss the radio with Cisplatin. My oncologist completely agreed with my request, and also stuck to it, he didn’t raise the subject again until I raised it with him, and this was just after finishing the radio. This gave me some control and allowed me to take things in steps I was comfortable with.

good luck for tomorrow

Hi Rackelsi

I found the stage you are at now hard. I had recovered from the surgery and felt quite well and was really worried about which further treatment I would need, how it would happen and especially about side effects. I worried about long term prognosis and doing the treatments and what would happen if I did all the treatment and it came back. 

It is also hard when they say they have got it all but you still need treatment. The way it was explained to me was that it was a sort of mopping up of any potential tiny cancer cells that were too small to be seen on a scan. In time, in some people, if tiny cells remain, they have the potential to set up again and cause further problems. My consultant also said that it was far easier for them to prevent a recurrence by doing adjuvant treatment than to wait for a potential recurrence and then try to deal with it. 

Googling for info is natural but scary and is not particularly accurate. All that google can do is to give a set of statistics, at a specific time, about a general group of people. It does not know anything about you, your specific results, how your body will respond to further treatment, your general health, medical history. When you have you post op results they will be quite detailed in information and it is the whole picture that can potentially give a prognosis from your consultant but even then it is an educated guess. So its not a case of googling stage 3 and that is all that is needed. 

I tried to get my head around it by thinking- I have done the surgery. It removed all visible cancer. I had chemotherapy to mop up any stray cells whole body wise. I had radiotherapy to mop up any stray cells in my pelvic area. I would then be checked every 12 weeks for 2 years and any recurrence would then hopefully be caught at an early stage. I was also told in detail about the signs of recurrence to look out for. So I had all the treatment and I will deal with a recurrence, if it happens in the future. Sometimes thinking too much can be overwhelming. I tried to deal with surgery first. Then Chemo. Then radiotherapy. Then check up appointments.

So questions tomorrow...

Perhaps make a list if it helps- of things you want to ask however the consultant is likely to be checking how you have recovered, giving you your post op results and explaining them. They will then explain which further treatment they recommend and tell you about them. I would not worry too much about thinking ahead of questions as I think just be guided by what is said. I always had a nurse in with me and found that afterwards she took me to a separate room and gave me a chance to ask questions. She also gave me a card with a number to call if I needed. After each consultation I would also get a report with everything on sent via post. My GP would get the same notes sent electronically and would often receive them first. So there will be plenty of chances to ask questions and get further clarification.

Good Luck for tomorrow. In the meantime we are here if you need us. 

Jane

Hi Rackelsi 

Obviously some great advice from Waidh & jane2511 . All I would add is that I took a note pad and made bullet points while the oncologist was going through my further treatment so I could remind myself afterwards.  I would take someone with you, my husband was with me, for extra support if needed. 

And don't Google, the info is on here and more up to date.

H 

Thank you so much for your really helpful reply. I had been making a real effort to avoid the statistics and focus on me being an individual, but my other half through me! 
How did you do on the treatment? I hope you are doing well? 

Thank you for your advice and reassurance, as ever super helpful Jane2511. I am usually pretty on it, you explanation of the post op follow up treatment makes total sense. One stage at a time, as Waidh also recommended. 
Hope you are doing well. 

Thanks Sbird. I think I am more worried about my partner being there tbh as he tends to hear one thing and  it the whole picture! Hope you are well. 

I’m doing OK generally, just had the second of the Paclitaxel/Carboplatin today.  I got through to week 4 of the chemoradiotherapy when fatigue kicked in. But recovered fairly well after the end of that. Started chemo 3 weeks later, side effects haven’t been too bad, but mentally the last two weeks have been a challenge, probably not helped as I was supposed to be on holiday last week. Feel more positive now as two down two to go …..I might just be seeing that chink of light at the end of the tunnel.

I'm quite well considering, thanks.  I've done 5 of 6 paclitaxel and carboplatin chemo, I've had a few side effects but all manageable. 

H 

It sounds like you are doing so well coping with it all! I guess knowing you should have being enjoying yourself but are still in the thick of it all is going to be a tough one. Glad that light is peaking through and I hope it keeps shining brighter and brighter - you on the last bit of that tunnel hopefully! 

Glad you are nearly there. Have you got anything in store after that? Good to hear side effects have been manageable for you - I hope I cope as well as you!