Oh we'll off for my check up with oncologist tomorrow.
Only my second since chemo finished. Very apprehensive as had some bloating and indigestion. No ca125 or scan since chemo finished so hoping they will give me a scan as have some chest pain as well. Ruth very helpful last week to put my thought in order. Oncologist a bit like the secret service so not looking forward to it.
Sharon
Couldn't the indigestion and bloating just be normal? I've felt sick a lot of the time over the last few weeks and was told by my oncologist that it's just part of recovering from two ops. It is the secret service compared to gynae, she told me I was sensible for not having Taxol because of my back problems, so why suggest it in the first place?
I'm sure you will be fine and wish the best of luck
LA x
Dear Sharon
I was trying to work out whether you're in Wales or just over the border. I have had a CA125 test before each 3-month check up and this helps to inform what goes on.
It sounds as though your oncologist is really a bit unhelpful. I think it is possible to ask for another if the hospital is large enough. I wasn't at all comfortable with my first oncologist whom I saw throughout my chemotherapy treatment. She wasn't an Ovarian Cancer specialist and whilst she was very nice she was rather dour and downbeat. Once my own oncologist returned from Maternity Leave I felt a lot better.
What is your oncology nurse like? Mine's really friendly and helpful, and in fact is more informative than anyone else at the hospital. My GP also has access to my hospital files and notes from his PC and will always answer questions. In fact I prefer to see him as he knows me well and is probably the best placed of all of them to provide help and support.
I do wish you luck tomorrow. Take in a list of questions you'd like answered. It might also be helpful to use the Symptom Tracker on the Ovacome site and take this in as it will enable you to give a better picture. I'm a bit surprised they won't do a CA125 test and yet they're talking about a scan. My hospital say they would prefer to avoid scans if possible.
Good luck. Let us know how you get on.
Loads of love xxx Annie
Hi Sharon,
I do think the indigestion and bloating is probably from the op .I had the same
when I went for second 12wkly check up and my onc told me it takes quite a
while for everything to settle down after chemo has finished. I have been taking
Aloe Vera juice from Holland and Barrett and it really helps with this problem.
Hope you go on ok tomorrow and all is well.
Take care
Angie x
Thank you all for your good wishes. I am in north Wales just over border. They don't do ca125 or scans as a matter of course even though my Ca125 was 72 when chemo finished in July. This is due to changes following a trial done showing not improved survival rates. I would like a scan as I have some spread into chest cavity on my scan before op. I have heard he is retiring soon so may get a new one then.
Hopefully all will go well
Sharon
Dear Sharon
As you're in Wales I think you'd be entitled to ask for a parity of treatment that you would have received in Cardiff. There was research to say that survival rates didn't improve with CA125 tests and of course it doesn't because there are other symptoms to go on before things get that critical. I don't think survival rates are relevant here - it does at least give you another measure of what's going on inside alongside other tests, scans, etc.
I really hope the visit goes well.
Love and best wishes, xxxx Annie
Hi Sharon
Thinking of you for your appointment tomorrow, even though I work in healthcare I still find it difficult to think of all the things to get straight in my appointments - in that sphere I have found the nurse specialist to be so helpful, she came with me in to my last appointment as my husband couldn't come. So I really hope they make up for your Mi6 onc.
Xxxx
Hi Sharon,
I hope it all goes well today.
Do remember that the treatment you are getting is YOUR treatment, and that you have a right (even a need) to feel trust in it. If you want tests - especially ca125, which is cheap and easy- ask for them. It is important that you have what you feel you need, and are not being treated in the dark by doctors 'who know best'. The truth is, they do not know much about this condition, and tend not to give enough weight to the power of knowledge and control that we patients can exercise.
If you'd like your ca125 checked, go to your GP and set up a testing regime (3 monthly during the first year is usual). If the count is rising, you will at least have an 'early warning' of possible recurrence, and if not; reassurance. All this assumes that it is a good marker of your disease, of course - it is not for everyone.
Don't let the medics leave you feeling powerless - there is a lot you can do to take control over your situation.
Very best wishes.
Isadora.
I hope your concerns prove groundless. I know how you feel - I think we all stress before a check up, imagine symptoms as wrose than they are, etc..
Also, I don't know where you are, but I would consider seeing another oncologist. There are lots of good ones out there, just as there are far too many not so good ones.
My first oncologist was lugubrious and, I felt, useless. I found another who is upbeat and positive and although I have to travel a couple of hundred miles it is easily worth it. I believe this oncologist's attitude has greatly helped my recovery.
You have a right, for example, to have copies of your oncologist's letters. Just ask, you usually have to fill in a form. Take someone with you and be assertive, even if it goes against the gran.
Thinking of you. Cx
Hi Sharon
I also suffered in this way after the op. I'm still getting my three monthly check ups (next one due on Thurs) and ca125 test. I do so agree that we have the right to know what's going on inside our bodies - we are not children - and I think you have received good advice from the other ladies. I think it really does help if you take someone with you.
Very best wishes
Mary xx
Dear Sharon
Do you see the onc in Wales or Chester or do they send you to Clatterbridge? My sister did not find the onc there very informative for her breast cancer last year! She lives in Wwallasey now but lived in Connah's Quay years ago!
My onc in York put me on lansoprazole in 2011 for the indigestion after my first lot of chemo and I have taken it ever since. I have tried to give it up but when I do the problem comes back. The turmeric (holland and Barrett) is also good for digestion and has the added benefit that it may also help to slow down the C cells. It is also a NICE recommendation that women over 50 with symptoms should be given CA125 tests as a diagnostic tool as raised CA125 is an indicator for further investigation. I get a CA125 test before every review as my cancer is a secreter! Your profile gives no indication of your age but I am sure that, if CA125 is an indicator for your cancer then you should be having the test as a matter of course!
I get treatment in Leeds but get reviews in York. This time (breast cancer) I get the op in York and radiotherapy at Jimmy's in Leeds. I never cease to give thanks for Jimmy's and the first rate care I have had throughout!
Look after yourself, pamper, pamper and in any spare time left pamper some more! Whatever your thing is indulge yourself! It will help to distract you and make you feel better!
I was full of hubris and feeling so well in remission after a recurrence 9 months after the end of the first lot of treatment when the b****r hit me with a new form! Breast this time! Still I am a bloody minded old bird and refuse to give in!
Download a version of the old Suffragette hymn by Dame Ethel Smythe! It stirs the blood and makes one determined to fight back!
Thinking of you and sending positive vibes!
Love Margaret xxxxxxxxx
Just a step aside re the lanzoprazole -- I have seen several references to needing to "wean oneself off" proton inhibitors like lanzoprazole and some people have done it successfully - why don't you start a 'question' on this Margaret, it could be useful...
Had not thought of that but the stoma can produce indigestion symptoms too! I just take one lansoprazole each morning. I have managed a week without it before I get symptoms but, as I have a small hiatus hernia with resulting reflux (especially if I eat chilli) so I do not really try giving up very seriously!
Good luck with that appointment, I hope it all turns out ok- my fingers are crossed for you.
Love
Sue
X
Hi. My Mother died of Ovarian cancer and I took part in research at Kings College Hospital for many years and when this finished I had a check at the Mary How Trust in Pulborough. A few years ago I was found to have cysts in one ovary but fortunately they dispersed. Last year my Doctor said that I could have a CA125 blood test which came back OK. This year he again agreed and I had my blood test but the Path Lab came back and said that they would not do it this time. I am upset that my Doctor agreed and they have gone against this. Waiting to hear back from my Doctor. If they will not do this now, can I have it done privately?
Any advice would be appreciated.
Very best wishes
Angie
It is not expensive to get a ca125 done, so it does seem odd that they won't do it, I wonder if you were more assertive with you GP they might then a agree for you to have it, perhaps go to a different doctor at your practice. Explain to them your worries and ask the reason why. Best wishes love x G x
Hi Sharon,
I think we might have the same oncologist, I go to Clatterbridge (I live in Chester) I had my operation in the "womens Hospital Liverpool" my oncologist is like the secret service as well
(like getting blood out of a stone) best wishes love x G x
Good luck tomorrow - and up with no sh*t put: demand the answers you need, I agree with the above about writing a list - also suggest you put it down firmly and visibly in front of you so she can see it exists - and do not let her divert you. Her job is to treat you as a person, not a 'cancer case'
Sue
xxx
Thanks Gwyn. If my Doctor doesnt get back to me re the CA125 test, I will make an appointment to see him again. Very best wishes Angie
I asked if I could pay for my CA125 privately, once I had gone past the five-year mark, and the specialist nurse said there was no need for me to pay for it. She set it up for me and I had it yearly after that. I don't bother now, as I feel I would recognise any signs that things may be going wrong........I hope! My sister also given a yearly CA 125 if she wants one, she hasn't had OC but because I have had it, she is given this chance. If you have a contact with the hospital, ask if you can see a Gynae/oncology nurse.
All the best
Love Wendy xx
Hi Sharon, I hope things have gone OK with your appointment. Some of these oncologists are very blunt and sometimes do not seem to understand how insecure we are feeling. I have found that the specialist nurse is so much better to get info from. She has the skills and time and the understanding to explain anything I ask. Let us know how things are going with you
Love Wendy xx
Thanks Wendy. I will just keep on pushing to get one done. Thanks for your advice as it is helpful to know that other people who are at risk of getting OC have been able to have a test. As my husband currently has prostate cancer and had a melanoma stage 2 removed last year it makes me very aware of having checks. Our Doctor dismissed the melanoma for 18 months and when my husband said it itched, was told to put germalene on it! Eventually after going back again the Doctor took it out as it was bothering my husband and it turned out to be a melanoma. He then referred him to a Dermatologist which he should have done months before. Fortunately he now has regular checks by the Dermatologist.
Love Angie xx
Hi everyone
My appointment went well. The oncologist was not available and I saw my gynpcologist who I find much more approachable and is never in a rush. He listened to my concerns and gave me a thorough examination and found nothing. He has had a ca125 done due to symptoms so much happier.
He also explained a little more about my original diagnosis which was complex due to different things in different parts. It was a bit worried my biopsy is. Not on my file so may be why my oncologist was vague.
A lot happier now and more confident in making any decisions in the future. Once again thank you all for your support.
Sharon
Hi Sharon,
I'm so pleased for you, you must be feeling so relieved now. If my body
is anything to go on...I still get lots of twinges and bloating 1year after
my op. My oncologist says this is normal and that your body takes time to
adjust after a big op and 6months of chemo.
Make sure you don't do too much and gets lots of rest when you feel tired.
Easy said than done at this time of year!
Take Care
Angie xx
That's great - glad it went well Sharon and you got your CA125 test.
S
xxx
6 month check-up: feeling great, but whoops!
Check ups after chemo finishes, 3 monthly or 6 monthly?
6 month check up and elevated CA125 !
First check up after all clear - what's the usual procedure?
my check up
