hello everyone...
well after waiting 3 hours as they were running behind.. i had a brief examination (just felt around my belly and my neck) i had a blood test done and was sent on my way till september!! i know this is probably the norm but felt a bit unsure.. i told him about my bowel pain but he just said lets hope that settles down soon...
oh well im sure he knows better than me..
hope your all ok out there .. Thank you so much for the well wishes...
love
suzanne.
xxxxx
Hi Suzanne
Obviously this consultation is not as reassuring as you would have liked, but they are the experts and if there was anything of concern there they would have found it. I'm sure you will feel alot better in time and particularly when you get the blood test results back.
This is good news so do try to take things easy, as you have had such a rough ride with all of this. Our resilience gets low dealing with treatments and surgeries etc etc. Try to build yourself up over the summer months.
Lots of love
Charlie xxx
Thank you charlie..
I am going to take some time off work during the school holidays so maybe ill perk up a bit then,,
Thank you
love
Suzanne
xxx
hi Suzanne
Glad all was well . I have decided in this journey to try not to worry until my consultant says so as he is the expert . I know this easy said but this is my mantra and what im trying to do . As far as i am aware the standard monitoring is 3 monthly ca125 for aprox 1 year and then every 6 months , Will not do scans unless there are symptoms . Dnt know if this is exact
Ally
Thanks Ally..
Yes i do think you are right there. Although i am booked in for a scan on the 19th july booked by my gp not consultant because of the abdominal pains ive been getting.. im sure i will feel much better once ive had that done.
love suzanne
xx
Hi Suzanne
I know how you feel, I've just been for another of my 3 month check ups and always have the feeling that this time something will be found (must stop thinking like that). I think Ally is correct. I have been 3 monthly check ups for almost a year, next one September. My Onc told me I can go 6 monthly after that..........yippeeeeeee!!!!!
Take care
Chris x
Hi Chris
I go back in September for my three month check.. and my oncologist told me that after that it would be six months... I had my last chemo in December and scan result in January.. after a recurrence..I think it is a bit quick to be going on to a six month check I feel sure they are cutting back.. I said to him "one minute you are saying I haven't long to live and now you are stretching out my visits" I don't know where I am.. The first time around I didn't get chance to go on a six month check because of a recurrence... But I was in remission for two and half years ??? I don't understand.. when was your last chemo? I feel unsure about six months I did have a symptoms of a recurrence for over a year before he took notce though. best wishes x G x 
Hi Gwyn
My last chemo was in Sept 2010. First line, no recurrance ........yet. So not sure what the procedure is with reocurrance. Maybe some of the other ladies would have the answer.
Take care
Love Chris x x
Hi Chris
Thank you for replying... so that will be two years then in September...I was about that... on my first line... I don't know how long they would have three month check ups on recurrence....but I would be eight months in remission September... I think It is too soon to stop three monthly checkups....my oncologist is so uncaring... one minute he is telling me I'm dying the next minute he can't remember why I'm there...he doesn't spend long with me anyway the longest time was eight minutes and the shortest time was three minutes and that was when he told me that there wasn't much he could do.. and it was too late for a trial... and my tumour wouldn't go away..but it has gone..Love x G x
Hi Suzanne
Sorry you had to wait so long.. only to feel a little rejected... I think this is the norm.. I am sure my oncologist makes up the time he has lost on me... I really am in and out... I don't even have a blood test as he won't do them or take notice if I get one done with my GP.. It doesn't instill much confidence does it ? we just have to trust that they know what they are doing...
love and best wishes x G x
Hi Gwyn
really surprised you don't get blood tests. If you feel ill or get symptoms do you get one?
Juliex
Hi Julie
No my oncologist refuses to even take any notice.... I owe my life to my GP when my husband went to see her (for himself) she enquired about me and he mentioned how worried he was that I wasn't well and that I don't have ca125 done, so she sent him home with a form for me, It showed a risen ca125 so she rung up my oncologist to tell him he said it wasn't any use as he takes no notice anyway nothing was done... then a few months later she rang me up to see how I was, I told her that I still had the pain in my back... ..she then sent me for another ca125 test it showed it was still rising..so she faxed the hospital... They made an appointment.. he then didn't know why I was there.. and said probably no need... But we'll give you a scan.. that is when I had a recurrence.. at the bottom of my back para-aotic artery it was too near major blood vessels and arteries.. so I had palliative chemo to attempt to shrink it.. he said it won't go away... but might get smaller..and I probably had about twelve months to live,
It was August..and he said that I might see Christmas.. the good news is that my tumour has gone and I am now in remission....which he insisted wouldn't happen...If I thought it was back I will get a ca125 done through my GP..she was furious with him...sorry this has turned into a saga but there is no other way I can say it.. Love x G x
I've got the opposite problem.I think my oncologist is fine, but my GP is no good. He diagnosed me with gallstones , then ibs and my diagnosis was delayed by 6 months. Was going to change GPs have now got a macmillan nurse who is better than a GP anyway, so don't feel I need to change.
So good that you are in remission after all that.
Love Juliex
Thanks Gwyn..
Yes you are right we just have to trust..
I have just had a call from my gynea,s secretary regarding a letter i sent o him about how he missed the invasive carcinoma in 2006.. he wants to see me next tuesday to discuss this, i am a little nervous as im sure he,s going to try and tell me that it was not his fault...Oh well we just have to plod on dont, we. xxxx
Hi Suzanne
Don't let him do that... Write everything down so you will remember.. and keep anything doctors letters etc that will back you up...I wish you all the best, have you got anyone that could go withyou as well... after all they have the tissue nurses with them... please try and take someone with you...love x G x
hi..
Yes hopefully my partner will come with me if not then my friend sarah will come..
xxxx
Hi Suzanne,
Will they let you know the blood results soon?That should hopefully put your mind at ease.
What a waste of time that appointment sounds.And waiting 3 hours........
best wishes,
Juliex
Thanks julie.
He never said when i would get the results but im going to ring next week to check.
love
suzanne. xx
My results are ready the day after the blood test, sometimes later the same day , not sure if thats the same everywhere. It would be good to have results before you see the Dr.
I agree with Gwyn ,about taking a friend with you.Did you make a complaint? Are PALS involved?
love and hugs
Juliex
I havent gone down that route yet i just wrote my consultant a letter with my concerns and said i was thinking of taking it further so now he has asked to see me.
xxxx
Hi Suzanne
Its so frustrating isn't it? I always have to wait ages and sometimes it seems like a bit of a waste of time at these check ups. No news is supposedly good news, but when things have been missed before its difficult to trust.
I think the key thing is to take these check ups as an opportunity to tell the oncologist what you think, not the other way around. Keep a diary of your bowel pain, each day say whether the pain is better or worse, and if you can establish any links, eg if it is accompanied by a bowel movement. Take this to your next appointment and present him with evidence.
I am glad you have a good relationship with your GP and that he is taking you seriously by getting the scan done. And obviously we all hope that this is not going to show anything sinister.
Good luck on tuesday. Perhaps you could tell the consultant how you felt about your check up not being thorough enough and that under the circumstances they should give you whatever tests or scans you want without you having to go back to your gp 
Vx
Thank you vicky..
Your advice is good im going to keep a dairy.. I am worried about tuesday. I just dont want to be fobbed off and ushered out not knowing why i wasnt treated sooner.
Thank you
xxx
Hi Suzanne
Poor thing, having to think about this as well and of course you are nervous.
Definitely bring at least one other person with you, write down beforehand what you want to say and ask him/ her to make notes. Decide beforehand what you want to get out of the meeting.Their insurers may have told them to not admit liability, but now more and more doctors do say "sorry" when they stuff up as this often makes a big difference to how patients feel .
Sadly many of us are deeply dissapointed by the care we gat from the medical profession.
Take care
Love
Charlie xxx
Thank you Charlie.
I am going to spend the weekend writing down the things that i want to ask.. I just want to know why if the cancer was there in 2006 why wasnt i told and why wasnt i treated.. why did i have to wait 5 years and allow a tumour to grow to the size of a football before any thing was done..
maybe i will just get the we are sorry we didnt inform you blah blah blah but i want to know.
You take care too
love suzanne
xx
6 month check-up: feeling great, but whoops!
Check up time
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