Hi all, I had my pre chemo appointment with my onc yesterday, my sister came along with me and i surprised myself by asking for my scan results, trouble is i am none the wiser really.
He said the results were not clear due to my type of cancer, which is stage 4 Papillary Serous Adenocarcinoma High grade.I know i have 'bits' on my diaphram', and a small amount of fluid around the bowel area, but he said just because we can't see where the disease is, it doesn't mean it's not there, he also said there could be hundreds of spots or it could be layed between my bowels and he said he was more interseted in whether the treatment was working more than where it was.
My CA125 results were still pending, but because i have felt better for the last 2 weeks than i have for a while, i am to carry on with the Caelyx, next session wednesday the 10th and the last one on the 8th of may. He did say he did not expect my CA125 to drop dramatically, only to stabilise it and give me a break before i need another course of treatment. He was pleasant and talkative for a change, but although i am quite pleased with myself for asking i feel no further forward.
Love and Best Wishes to all
Adele xx
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Please don't beat yourself up about feeling non-the-wiser about the scan results. It's good you asked some additional questions because it gave the oncologist a chance to continue a discussion with you and you've obviously benefitted as he was so pleasant and talkative. It augurs well for future appointments.
I worked in a medical school for 10 years and have a huge respect for the years of training these people have done. They have had years of treating patients and you'd expect them to have a greater understanding and intuition than us even though we do try to research and understand what is going on.
Well done you for asking but I will disagree you are no further forward. You have a lot more knowledge under your belt than before and understand the process. I think you've taken a massive step forward and I have a huge admiration for the way you're processing that information.
How did you find Caelyx from the point of view of side-effects? Do you feel it's been worthwhile?
Let's hope it gives you a nice long break from chemotherapy.
Love Annie
Hi Adele, we are all differant but if Sandra had her bloods taken yesterday I would be on the phone by 9am getting the results. Although Sandra hates me doing it because she is frightened of the results, I can honestly say 9/10 times the results have been in her favour and hence cheers her up. Not everyone would like to do this for fear of getting bad news. Ref Caelyx, we have experienced this chemo ourselves and it worked well at shrinking the disease, I keep my fingers crossed it will do the same for you. Ref your scan being vague, I would treat that as good news and something to celebrate because anything large should show up I would have thought. Keep your chin up and good luck on the bloods. Love Paul x
Ummm. I see from your profile that your CA125 actually rose at the last reading. Your onc is saying that he can't really tell from the scan what's going on, and your CA125 rose at the last reading?
It occurs to me that he's in something of an information vacuum. One possible solution would be for a PET scan, which should be more revealing. Another would be a second opinion, which I've mentioned before.
The Ovacome help line should be abke to talk thru the options with you. Always remember that it is your cancer and you have the right to know as much or as little as you want.
I see you're in Nottingham. I'm in East Yorks, if you like we could meet up somewhere mutually convenient for a gripe. I am the same age as you and I have a similar cancer, though it's stage 3c high grade and has so far been docile in the face of treatment.
Annie, it does feel like a massive step for me, i didn't know i would ask until the words came out, i feel more able to face reality now and deal with whatever comes next.
Regards Caelyx, i have found it tolerable, side effects quite minimal, 2 or 3 days of feeling rough and a little nausea but not bad at all, and yes i feel it has been worthwhile, if this horrible disease remains stable for the next few months, at least i will have the summer without treatment, i seem destined to spend my winters having chemo.
I felt comfortable talking to my onc which i agree augurs well for the future, i am not a rock the boat person and tend to trust what i am told, not sure that is a good thing though, will have to wait and see if that changes as things progress.
Paul, i agree that the vagueness of the scan results is good news, and i know this proberbly sounds ridiculous but it felt like a bit of an anticlimax, building myself up to ask the question and then still not knowing exactly where it is, although of course i am relieved nothing large showed up. I am not so concerned about the blood results, i have felt alot better and symptoms have subsided, i can usually work out for myself whether treatment has worked or not, my body shouts very loudly when it doesn't.
Hi Chrystynh, i have thought about the pet scan option but i doubt i would get it i'v heard it's quite expensive and you have to apply for it, but it would not hurt to ask. After the end of first line treament i asked if i would be scanned and he said no they would just monitor me by my CA125. I will ring the Ovacome helpliine as you suggested it might help clarify a few things.
Yes, i would like to meet up, i am yet to meet anyone with this disease and gripes are good for the soul.
Just wanted to comment as I have been told similar regarding the disease that can't be seen. I was told I have lots of little patches of low-volume disease all over, so its likely there are ones that are too small to see and this is typical of serous disease. Its horrible to think that this is going on inside and that the doctors don't seem particularly bothered by it. I got myself in a right state about it, but have managed to come to terms with it now. The way they have explained it to me is that as long as I continue to feel well, and as long as there is no high volume disease, then they don't want me on chemo yet, though I know it will come at some point in the future. They also told me adding all the little bits together is probably less than the size of a tennis ball and that made me feel a bit better.
Since you are already having chemo, you are already having the best treatment that you can. In other words, even if they were able to identify any more areas of disease, it would not affect the treatment you are having. So, carry on the good work and I hope you continue to feel well for a long time to come.
Incidentely, my last treatment was caelyx and that finished 3 years ago, so you can see it did a good job of dampening the fire.
Hi Vickyem, thankyou for your comment, i'm happy that caelyx worked for you, i can only hope that i too will have a good break from chemo and continue to feel well.
I agree it is horrible to think about what is going on inside, i think of it as the beast within.
Your comments about low volume disease have explained it to me in a way my onc failed to do. I have picked up so much information from the people on this site. You are all invaluable.
Love Adele xx
Hi Adele,
Thinking of you and sending my best wishes love x G x
I can't add much but sympathy for this horrid information gap. At the start of all this I had to run through the entire gamut of scans each time being told "we aren't sure we can see what's going on" despite already knowing it was cancer of some kind. Knowledge is strength and power. Reckon checking with Ruth is a good idea - arm yourself with some different questions and angles which might give you some more intelligence. Not what the doc doesn't know but what he can deduce from what they see so far... If that makes sense?
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