I have noticed that many of you have scans after chemotherapy. I finished on 9th July my chemo. My ca125 went from 44 to 66 during chemo. After fourth chemo I was told I would have a scan if it continued to rise but it stayed same after fifth chemo so I was told no need for a scan. At my two month check up gone up 72 had examination but no scan. I have questioned this and been told latest research indicates scans do not improve survival rate. I have seen a brief summary of this research and had accepted but am wondering why others are still having scans. I life in Wales
Thanks
Sharon
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Wiganw
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It is confusing, I had a scan after 6 cycles of chemo,but I don't get blood tests or scans on my three month check, you could give the ovacome helpline a ring tomorrow and speak to Ruth Payne and ask if they have changed the protocol tel 0845 371 0554 best wishes love
HI I had three chemos then a CT scan to see if my tumour had shrunk. I was told it had shrunk and now they can operate, Im going in on the 8th October for a TAH and removal of the ovaries and omentum basically they are taking it all away. I live in Kent and Im having my treatment at Maidstone Hospital. Hope this helps Love Babs x x
Hi Sharon, I had hysterectomy and omentum removed,then 6cycles of chemo,then a CT scan.I always had a blood test when i went for my check up,but last time i went i was told they don't do them now unless symptoms are back,like Gwyn says it is very confusing.
I had a three month check up last Thursday... and my oncologist said there was no need for a three month check up anymore....as research findings are..that it doesn't prolong life... so no scan--no more ca125 blood test--no three month check up--what next ? I think it is very worrying...he also said unlike primary ovarian cancer where it is beneficial to find it early...it is not beneficial to find a recurrance early...treating a recurrance early does not prolong your life...I hadn't had a blood test for two years and I had a recurrance for over a year with symptoms...that my oncologist ignored if it wasn't for my GP sending a blood test form home with my husband I wouldn't be in remission now...best wishes love x G x
Hi Gwyn,I had the all clear September 2010,and have had 3monthly check ups since,always examined and blood test taken.Last time i went was May and that is when i was told no more blood tests ,and was put on 6 monthly check ups. It reassured me when i had blood test ,but now i find it all a bit alarming having to rely on myself to realise something is wrong if that makes any sense !!How long have you been in remission ? My next check up is November.
I've been in remission now nine months...after a recurrence...after initial diagnosis I was in remission for two and a half years.....although I would argue it was less than that as I had symptoms for over a year before my oncologist took any notice (see my comment further down) I hadn't had a blood test done for over two years but my husband went to our GP about himself she then enquired about me...he said he was worried that I had symptoms but wasn't getting a blood test she then sent him home with a form for a blood test...I had a risen ca125 and the dr told me she panicked and rung the oncologist..but he said the blood test was no good without symptoms..about a month or so later she rang me and asked how I was doing..I explained that I had symptoms and that I didn't know what else to do..she then sent me for another blood test which showed a further rise so she faxed the hospital and they then made an appointment but my oncologist said probably no need but I'll send you for a scan...well there was need and I had progressive disease and I then had palliative chemo to attempt to shrink it...with very little chance of remission..but I am in remission much to the oncologist's surprise...sorry this is so long but my view is that you do need to keep on top of things yourself love x G x
in reply to
I was told if symptoms persist longer than three weeks ie not come and go but stay... then see about it...like I said I had the same symptoms for over a year..and mentioned them every three months on my check up but to no avail !!! x G x
Thanks Gwyn, like you say i will know if it is back myself ,so far so good.So pleased your in remission again ,long may it last.
Love Sue xx
Hi Sue, I live in Wales and am having my last of 6 chemo cycles on Oct 12th. I was in clinic today and my CT scan was booked for Nov. I had TAH 5 weeks ago and not all tumours were removable so expect they want to check if the last 3 chemo's were able to remove or reduce what was left.
My thoughts exactly (see my comment below) no blood test/ no appointments/ no scan...what's left ? Like you say we will never know...we get very little support for OC as it is ..have a good day love x G x
I'm so grateful to everybody for all your personal experiences that you kindly share. It gives me more insights and understanding about what our disease involves.
In this issue of no blood tests, no CT scans are necessary until new symptoms, when the cancer has already recurred, the reason seems to be it is eventually the same in the end whether you have these examinations or not. The medics maintain that our quality of life meanwhile will be better without all these examinations.
I feel it is up to the patient to decide at least for a blood test. If the patient is anxious to know what is going on, then doesn't all this anxiety affect the quality of her life?
I wasn't offered to start with a full hysterectomy, the reasoning was, it would take 2 months to recover and If I were to live according to statistics for another 18 to 25 months, 2 months would be a big chunk out of my life. In the end I had a three key hole hysterectomy. In two days I was outside taking my normal walk. I wonder what would have happened if only one of my ovaries was removed as it was first suggested by the medics?
How much does a blood test cost for somebody to have her peace of mind?
The blood test is only twenty pounds, not a lot of money for peace of mind, their argument is that for some people it makes them worry more when nothing is done after the ca125 is risen, they will only start treating when you are symptomatic... they won't go by results of a blood test unless it is accompanied with symptoms as well...In my case I had symptoms and no blood test,so logic tells me that my oncologist takes no notice of symptoms, if those symptoms are not in the place he would expect, I had a recurrance not in the usual pattern of things hence missing it... .I do have my GP with whom I can have a blood test done if and when I think it is necessary which is a good thing...I feel the reason for the cut backs in oncology is more likely to save money..but of course don't know as treating a recurrance too soon doesn't make any difference to extending life...and like you said less treatment gives a better quality of life...i guess it is a balancing act...and a waiting game as to when is the right time to start treatment again..love x G x
I know exactly how you feel and sympathise. It's getting on for six years since my diagnosis and I have had only one Ca125 blood test since finishing my one 6-session of chemo - not even one directly after finishing. My Onco says it's not a reliable test (Maybe just for me?)
I also had no scans at all until I had problems three years ago, when the cancer had returned. Told no treatment - couldn't understand why. Told, as Gwyn andothers have said, above, that the result of 10 year survey shows that it makes no difference to length of life, if there is a RECURRENCE .
On joining Ovacome, only this Spring, I was very disturbed to read of others having a good number of lines of chemo and upset that my Onco was adamant that I would have no more . However, I've seen, lately that more and more people are now being told, as I was, that quality of life is more important. I do now accept this as I have done so many lovely things that I couldn't have, if I was having repeated chemo.
Good luck and best wishes for the future, Love Solange
It's me again...I agree with you to a point... but if I hadn't been given a second lot of chemo I wouldn't be here now...so it might be where the recurrance is...I don't know.. if I hadn't have had a blood test done by my GP and showed a risen count..I would not have had a scan and not have known I had a recurrance.... at least my oncologist would not have known...as like I said he didn't pick up on it...it came back in a very dangerous place so it couldn't be ignored....love x G x
I see what you mean. Thank goodness for you GP!!. It all goes to show how we're all different. It's probably because I then had the hateful disease in my Lymphatic System as well as tumours in my pelvis. So much for me trying to be reassuring !! Sorry to anyone I may have inadvertantly mis-led ..................
Trust you to think that you've put your foot in it.."you haven't" we are all different I guess that's where the medical profession falls down if they treat us all the same...I hope they don't ...have a good day lots of love x G x
I did not have chemo as it wasn't suitable for the tumour I had but my gynae-oncologist did send me for a scan and then a second one six months later. However, he did point out to me that this CT from the trunk of the body was the equivalent of 4 years natural radiation in one go so maybe they do need to consider this when offering people scans.
I think that's a very valid point..... too many scans are definitely not good and of course they do try to limit them...but I would have thought that they would have given a. scan at the end of treatment...to see how well the treatment has worked...routinely though is not a good idea...perhaps they can tell using others methods though..we are all different...love and best wishes x G x
I seem to have lots of scans compared to most people, but without them my dr would not have known that the cancer was back so soon as my CA125 was 15 at my first 3 month check up and the scan showed a new 4cm tumour. I'm not sure that they can say scans don't help to prolong life, although in my case my treatment following the scan didn't work so I suppose you could say it wouldn't have made any difference!
It's all very confusing the differences in treatment from one hospital to another, for example I am never examined when I go for a check up, whereas I know some people are every time.
The results of my latest scan have left me terrified so maybe it's not always best to know exactly what's going on inside you!
I'm finding all this 'won't prolong life' attitude very alarming. It feels like some oncs are saying 'as you're going to die we, won't bother doing anything else'. Whilst I accept there are some dangers with a ct scan, surely the main purpose is to identify if there have been any further malignant developments. And then discuss whether to treat them or not if there are problems. I'm already thinking that if my onc takes that head in the sand route I might enquire about getting a ct scan done privately.
I had so few symptoms - just looked very pregnant. How on earth would I know things were going wrong if I'm not scanned?
I've always had a scan after finishing chemo and also one halfway through making a lot of scans. I started my fifth line today.
As for CA125 there was only once when I did not have it taken,
I asked my GP about that and whether it was cost when I said I would be quite happy to pay my £20 to have it done he looked at me as though I was crazy and said it costs a lot more than that.
I have also asked the onc about the number of times we can safely have scans she said if I was young she would not give me as many scans but and I finished her answer as she was looking a bit flustered by saying at my age it doesn't really matter.
remember we are all individuals and we will all be treated slightly different + some hospitals will operate differently to others. The system has guide lines or so they tell me and indeed age is always something they take into consideration too. Scans are very expensive the CA 125 blood test alone costs the NHS around £20. A CT scan would be in the hundreds. But this isn`t usually the reason why they don`t offer one at a time when we feel we need one.
Usually a scan will be carried out at the time of diagnosis and again after treatment. My own CA125 had dropped from 1,800 right down to 14 but I was still given the end of treatment scan.
I was told that they may not do any more scans and certainly not straight away if CA 125 rises. This is because scans can actually trigger cancer growth or encourage growth so they don`t like to do too many. All these issues will be taken into consideration when they decide if a scan would be helpful or not.
If the CA 125 rises and they know the chemo has worked previously, then they are more likely to monitor you through the blood tests alongside the treatment. But as I say each and every individual case will differ.
In the beginning it is vitally important that we find an early diagnosis - sooooo, a scan to either diagnose or outrule cancer is usually taken out. Early diagnosis offers a much better prognosis. But once we have been through the cancer we always carry a high chance of it returning at some point. The first two years are vitally important to monitor through blood tests with OV C. then after 5 years we will often be given the all clear and not seen again.
Should the cancer return in this time or if the cancer wasn`t completly gone after 1st case, then pallative intent will be offered, this is different to pallative care which is basically care given to make us as comfortable as possible at the end of life. Pallative intent is to offer us a longer and better quality of life for as long as possible. Scans in this case makes little difference to us at this stage, all it can tell us how the cancer has shrunk or spread. This can often be detered through the blood tests and symptoms.
I hope this helps, I have tried hard to explain it as it was explained to me by my oncologists.
Love with massive hugs to you all out there fighting the battle
from Tina xxxxxxxx
My Oncologist (who is a Specialist in gynae cancers) is very clear on this. He says that, to diagnose ov.ca. he needs 3 things: a physical exam, a blood test, and a scan - NOT only one of the above. Other cancers are different (he says).
I argued with him about the number of scans he had taken of me in the first 2 years, but now they are fairly sure that ca125 is a reliable marker in me, they are happy to let me monitor that (3+ yrs in remission).
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Thank goodness for you GP!!. It all goes to show how we're all different. It's probably because I then had the hateful disease in my Lymphatic System as well as tumours in my pelvis. So much for me trying to be reassuring !! Sorry to anyone I may have inadvertantly mis-led .................. 
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