Had my last appointment with my old oncologist today to talk about CT scan that happened on the 23 June,he said most areas had regressed except one part in my abdomen,he had mentioned avavist in his last letter that I would be a good candidate ,but today has done a total uturn and as changed his mind because he said of the blood clot I had I would not be suitable ,but if I want to try Avaist he would do the paper work but state his concerns,and also surgery was also out of the question ,so I what next ........monitor you every 12weeks ?with CA125test .......scans .........No symptoms . Oh my God what symptoms I did not have any really until it was to late and look at the mess I am in now ,and my symptoms were to do with my thyroid going .I did not get a bloated belly or the felling of being full ect ,so what in God's name should I be looking for from now on ???????????.I am so confused and deflated never mind finding a new oncologist ,I might find a new hospital or why bother ,I think I stand a better chance of fighting this cancer on my own because this last six months there as only been the first nurse who did my ultrasound and pushed my appointment through and the chemo nurse who have been there .My faith in the health profession is at a low.
Thank you for my rant Ann xxx
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cancer48
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I'm sorry, I'm a bit confused if your Oncologist is retiring/leaving is he/she not being replaced at the hospital you attend? Would the hospital not arrange this for you? Don't give up, fight for what you want. Ask for a second opinion maybe, there are lots of threads about that here on the site and many women could offer great advice.
I am sorry that you are having all this worry. If you are in the UK I think it might help you to ring the Ovacome help line. My oncologist is retiring but I was transferred onto the list of one of his colleagues a while ago and have been very happy with the way this has worked out. You might actually benefit from having a new oncologist look at your case.
You have my sympathy, I know just how frustrated and abandoned you feel sometimes. As you quite rightly say, you don't always have symptoms and when you do sometimes nobody will take them seriously. Find a different hospital and oncologist, I think that's your best course of action. Lovis x
Ok, making a few assumptions here that you have just completed your first line of treatment and this was your end of treatment scan. Its normal when scans show regression or shrinkage to put people on 3 monthly check ups and monitor CA125 and symptoms. If at the next check up there is evidence of a rising CA125 or you report symptoms then this invariably triggers a scan. I understand your concerns about symptoms because they seldom present any, Sandra never had symptoms that sparked a scan, it was mainly the trend in CA125. The 3monthly check up also gives people a break from chemo and allow the body to recover even if disease is still evident. I,m sure your old oncologist is doing everything by the book and you shouldnt lose confidence. If you do want to be treated elswhere...depending on your location then the Christie in Manchester or the Marsden in London are specialist cancer centres. There are however plenty of other places who offer a high standard of care.
Thanks Paul ,my old oncologist is old but has never explained anything to me my husband or daughter and from my first meeting with him all he wanted was to pass me on to the trials nurse ,did not discuss my chemo ,what stage my cancer was at or anything so when I did not go no his trials as it would put back my chemo by 3 weeks .so when I went to him to sign for my chemo prescription,paperwork for staining on my secondary was missing and he refused to sign for my chemo, I had to go my self and chase up the missing document by the way his Secretary had it .And the 2 appointment I had with him was no better ,but that is a tale
Ann xxx
hi cancer 48 am sorry you are losing your oncologist but I am sure there must be another oncologist he can refer you to for your check ups. In fact I would ring his secretary tomorrow and say that to her. I would also ring the oncology unit you have attending to see what plans they have put in place. By the sounds of it you are doing well but you need to be monitored every three months. If you get no joy then ask your gp to refer you to another hospital in your area. Its your body and you must look after it,
Hello cancer 48. It sounds to me as though you could do with a new oncologist. The retiring one does not include you fully in your own treatment, either by listening or by explaining. Surely the hospital must be replacing him and if so you will be transferred to a new one. I suggest you give the new one a go. Tell him/her you want full explanations of your condition and reasons for treatment prescribed. If you like him/her ask to be put on his patient list so you won't keep seeing different people. The buzz-word here is continuity of care.
Avastin can (in a small minority of cases) have serious side effects involving blood clots so there may be a good medical reason for the turn around. I am just starting Avastin and my oncologist handed me a print out from the Macmillan web site while i was in his consulting room. It gives a description of how it works and side effects. Perhaps you could get a copy. Macmillan have copies for other chemo treatments too. Always take notes at meetings and ask your oncologist to go at writing pace. It has a magical effect.
You can also write to PAL (patient advice and liason) at your hospital and give them a list of muddles you want sorted out. A well written letter can work wonders. Get someone to look over the letter before you send it to make sure it is clear and authoritative. I use a daughter for this!
The NHS is a labyrinth of paperwork, not always well joined up. Seems you are finding your way through to the vital secretaries. Go Cancer 48!!! By the way I also have to remind myself that a bad communicator in not necessarily a bad doctor. Wishing you the very best. Feeling mucked about is very dispiriting especially when energy is low but you will find a way through. Getting onto this site is a good move. XX Liz
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