Monitoring

[27-359]

Good morning ladies

I shall be finishing Avastin in August and at my oncologist appointment this week, asked how it would be monitored when treatment finished. I expected that i would at least have regular blood tests to check CA125, but was told that nothing would be done and they would rely on me to contact them if i felt i had any symptoms!

I pointed out that i had never had symptoms and was told that if it reoccured i would have. What do you think? Has anybody else been cast adrift like this, because that's what it feels like.

Jenny

[harpist_UK]

I finished Avastin in February and am on 3 monthly checks. At my first check this week I had standard blood tests and CA125 and a physical examination. All was looking good except CA125 up slightly so they are scanning on the basis of that just to check there's no activity. Of course everyone is different and if you were NED, Jenny, then you might be different from me as I wasn't quite that. Chemo is my main treatment - I haven't had surgery as they reckoned my quality of life would be better without it.

[Hidden]

I don't like to generalise, but that doesn't sound right to me. 3 monthly check ups for the first year, with clinical exam and bloods, are routine in my experience. I would raise it again at your next clinic, and seek clarification/confirmation so that you are absolutely sure that this is how your clinic operates. An anomaly like this would really bug me, and I probably wouldn't be able to wait till my next clinic appointment to check this out! I have phoned my clinical nurse specialist or the Onc's secretary on a few occasions when something has been niggling me following a clinic. You really don't need to be worrying about things like this while you are in treatment. Hope everything gets cleared up x

[27-359 in reply to Hidden]

Yes, I won't let it go. When he sees those big girl pants he will know I mean business!

[Katmal-UK]

Hi Jenny

I'm shocked by the response you got. It just doesn't sound right. As far as I am aware you should be having regular check ups, starting with 3 monthly then going on to 6 months after a couple of years. At least that's what happened to me after I finished on a trial for Avastin back in 2008. I, like you, have never had a symptom and I've recurred twice. I definitely think you need to check this out. Hope you get this resolved and they really don't just intend to cast you adrift. xx Kathy xxx

[27-359]

Hi Kathy, A couple of people have told me that this is the policy in my area, but I will make it clear that I am not happy with it.

[Hidden]

Yes you describe that exactly as it feels cast adrift. I am sure you can contact your CNS when needed and also will have follow up appointments with your oncologist, you need to have those, and should ask for them. You will do fine really, its a stage we go through and perhaps best is to contact a Macmillan Centre or ask if there is any support centre near your home or hospital,

[27-359]

Thanks. I feel strong enough to fight my corner, so am hopeful that it will be sorted to both our satisfaction.

Jenny