In June 2012 I was diagnosed with ovarian carcinosarcoma (usually described as 'rare and aggressive') at stage 1c. I've had the total hysterectomy and will shortly will be having the 6th and final (fingers crossed!) dose of carboplatin. So far the ca125 has been well below 35 and a ct scan in late September found nothing (other than gall stones).
My specific questions are:
How often should I be seeing an oncologist?
How often should I be getting a ca125?
How often should I be having a ct scan?
Is there anything else that should be happening?
All basic stuff, but I'm keen to avoid falling into an administrative hole that could be detrimental to my health. Whilst the actual treatment I've had has been good, there have been several worrying times when the admin system hadn't picked me up until I started asking for action.
Love Christine
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pixinafix
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I think it depends on where you live and your oncologist .
The general procedure is they no longer routinely give you a blood test, they don't give a scan routinely either, you will get a check up and be monitored every three months.
(ie examine your tummy) for the first twelve months.. then they might drop the check ups down to four or six months...if you are at all worried about this.....you could get your ca125 taken through your GP.....best wishes love x G x
• in reply to
I just wanted to add that the guidelines have changed somewhat since I was first diagnosed in 2008 they started doing blood tests every three months...but stopped after recent reports showed there was no advantage to this... as it didn't prolong lives the urgency that there is in finding it early..no longer applies to a recurrence...and if anything they don't want to treat it too soon as they don't want to run out of treatment options...they don't do scans unless they think there is need ie if you have symptoms and now they are starting to cut back on examinations too... my oncologist told me that there is no evidence of them finding a recurrence on three monthly examination either...so was cutting back to six months (after only nine months in remission) I did say no blood test, no scan, and no three monthly check... up what else is there left? so he agreed to see me in four months...the goal posts keep changing.. even when it's incurable...love x G x
I don't like the idea of not monitoring the ca125, so I'll try the gp route if none are being done.
Love Christine
Hello Christine,
I also had 'rare and aggressive' carcinosarcoma - but mine was stage 3c. I've been in full remission for 3.5 years.
To answer your questions:
How often should I be seeing an oncologist?
After finishing chemo they should send 3 monthly appts initially. My Oncologist was adamant that ovarian cancer patients must be seen this frequently for at least the first year, and preferably the first 2 years.
How often should I be getting a ca125?
Certainly at each oncology appontment, and more frequently if you are at all worried. Go to your GP and ask to be given a blood test on demand (within reason). The test is cheap, and if it is a good marker in your disease, an invaluable resource for your peace of mind.
How often should I be having a ct scan?
My onc. made me have one a year for the first 2 years. He said he needed a physical exam, a blood test and a recent ct scan to diagnose ov.ca.
After 3 years they have relaxed my appointments to once a year, but I can still have blood tests whenever I want one, and see the onc if I'm worried.
Is there anything else that should be happening?
Yes. You need to do all you can to support your own immune system and prevent reoccurrence. Now is the time to do all you can to support your general health. There are many books to help - Servan-Shreiber's 'AntiCancer, a New Way of Life' is my favourite. Physical and mental health are both important.
Look after yourself, and be proactive about your needs and treatment.
And thanks for your detailed reply. My local hospital which I will be referred back to does not have a good reputation, but as it is only a 10 minute walk away I want to give them a try out.
Well done you for being disease free with the 'rare and aggressive'.
Hi Isadora, I just wanted to let you know how helpful I found your info. I was diagnosed similarly to you in August and have been struggling with adjusting to the prognosis since then. Reading your message gave me a burst of optimism and a resolve to be more proactive going forwards. Many thanks, Hannah.
So pleased you are nearly there with the chemo xxx
It baffles me as to how different Hopitals and Oncologists work in the way they follow up patients after surgery and chemo . It is normally a very worrying time when the chemo has finished and one is not sure how to feel or what to think .
I was most surprised to hear from my Oncol that he did not want to see me till next March and I last saw him in September .
He does like a blood test done before each visit and he will scan again next summer but his parting shot was if there IS anything at all you are worried about its straight back to see him ...
Isadora is right when she says to look after your self and get out and enjoy your self too xxx
As I didn't spot there was a problem in spite of the huge tumour, I don't feel confident at knowing when things are going wrong.
Are you happy with the 6 month gap between appointments? Do you feel cured?
I'm not sure what I feel! Relief is in there as things seem to be going alright, but there's also anxiety. The last dose of chemo made me really weary and it's only in the last couple of days that I've stopped considering if I've enough energy to do what I was planning to do.
There have been several postings about chemo effects lasting 2 years. I had thought I'd be back to normal early in the New Year, but the New Year may bring further surgery for the gall stones which were discovered at the same time as the oc.
I started to pen you a reply Thursday afternoon as have had a couple of busy days which is nice to be able to say .... but was using hubbys lap top and it disapeared ..... better off on the pc as I am doing now .....
In a way yes I am glad there is no apt for 6 months as it will give me a break from the hospital and I know that if there is anything that I am not happy about I will be straight back there ..... Not sure how you describe 'cured' but I feel well and happy and good to be doing things as long as I do not get too tired ....
The last dose of chemo really laid me low and hit me hard after about two weeks ..like hitting a brick wall ...but having said that the engery levels did pick up again slow but sure .
My knees and feet ache first thing in the mornings and after I have been sitting for a while ...awaiting a bone scan results ..as have Osteoporosis in the family but other than that feeling ok at the mo .
Take it steady and sure and do a little and rest a little xxxx
No worries re moan moan moan ..its what we are here for to listen and help each other if we can xxxx
That's a lovely reply! I'm waiting for what happens next as I've not got any appointments for anything. Chemo reception said they would chase it up for me which may end up as me chasing them up.
A 6 month reprieve sounds good but I just don't feel confident at detecting problems. I'm trying to regard it as a 'year out' and think life will gradually return to normal in the New Year.
But for now, the final dose is proving tough, so I'll shortly be leaving for the out-of-hours gp service. I've been having lower right abdominal pain which has started spreading, nausea and general unwellness plus a bit of vaginal discharge. So what is it? Infection? oc? gall stones? and on the phone I was asked if I still had my appendix! Really hope I'm not having an appendectomy this weekend.
Hope the bone scan goes alright. I have osteopoenia which is a stage before osteoporosis and have taken drugs to encourage the bones to acquire calcium for several years. My main precaution is not to go out when there's any ice around, so the food store always has a siege mentality in winter.
So very sorry to hear that you are not well but very glad to hear you are seeing the doctor , do hope that you can get it resolved soon ...
I had a mail from my online pen friends hubby re her progress last week and he said there is no more treatment for her but he told me not to just rely on the physical examination alone but to look at my self interrogatively ..ie waist size ..changes in ones body ..He wishes they had more scans or private scans as he thought it might have told them that the cancer was returning .
He thought maybe it would have given his wife a better chance .
I think we have to try and be a little more aware of anything new in our bodies with out worrying our selves silly .
Yes things will return to a new normal as the knowledge of what we have been through is still there at the back of your mind ..others will look at us and think oh she is fine now and doing well but for us we are living with it but determind to get on with our lives and go forward and most important of all to enjoy life again .
I have had the scan thanks but must go and get the results as they should have them now ...
Last year we bought some of those grippers you can put on the soles of your boots and shoes ..they are very good !
I was very glad to have them on my boots in the snow after my op last year .
I'm sorry to hear your penfriend has come to the end of all treatment. From reading this site one gets the impression that there always is something.
Since getting my diagnosis I've told most of my friends, but not all. It took me months to realise that the ones I instinctively didn't tell were the ones likely to gossip, and write me off.
One friend who I've known for nearly 40 years but rarely see then told me that her husband has had lung cancer for 2 years, followed by 2 brain tumours and a number of seizures this year. Whilst her 2 sons live near by, she doesn't have a site like this where she can ask stuff and let off steam. I feel very lucky that we have ovacome as I don't know always who else I could ask and neither do I want to be a moaner all the time.
Looking forward to a happy (and long!) life for us all,
Thank goodness its a wee infection and not more ...... have been thinking about you today x
Its strange how different people react to news of illness ..one of the ladies at a group I go to at our hospital has had some most awful comments from a mother at her childs school ..because she has cervical cancer ..Comments I would not repeat here .
Yes Christine we are lucky in as much as we have this wonderful net work of support here and although I am not able to attend the meeting in London next week I have written to the ONLY MP from our area that hopefullly will be attending to add my concerns and thoughts about the lack of media coverage for OC other isuses ....
Just you take it easy now and get well soon and drink oooodles of water !!!
Thank goodness its a wee infection and not more ...... have been thinking about you today x
Its strange how different people react to news of illness ..one of the ladies at a group I go to at our hospital has had some most awful comments from a mother at her childs school ..because she has cervical cancer ..Comments I would not repeat here .
Yes Christine we are lucky in as much as we have this wonderful net work of support here and although I am not able to attend the meeting in London next week I have written to the ONLY MP from our area that hopefullly will be attending to add my concerns and thoughts about the lack of media coverage for OC other isuses ....
Just you take it easy now and get well soon and drink oooodles of water !!!
I've also been told it can take 2 years for the effects of chemotherapy to work out of the system - and for some unlucky ones the neuropathy doesn't go away.
I read on the Macmillan site that it's good to do aerobic exercise for half an hour 3 times a week and that this is thought to extend remission. It makes sense - but if you're not keen on sport you could also try yoga which has a similar effect on oxygenating the body. Diet also helps - as does a positive attitude.
My sister has defied the oncologists. Over the last 35 years she's had 3 different cancers - all very aggressive and 'incurable'. She has devoted her life to keeping well with diet and exercise and she is the best testament to this because she remains fit and well. I guess it's also a matter of luck and genes. I'm hoping I might be as lucky as her.
Good luck with your remission and ongoing progress. xxxx
What a variety of after care there is! To be seen every 12 weeks would be comforting, so I hope that is what is offered to me.
I'm struggling with the idea of not being back to normal for a good while as there's a strong feeling of 'just about done the chemo', therefore everything should be as it was.
Still, I'm planning on being here at least another 20 years and fully expect that these times will pass whether I worry about it or not. Best not to waste enregy worrying!
I agree with Isadora. Apart from the cat scans, blood tests etc, it is a good idea to focus on diet and general well being. The book she mentions is very interesting and makes a lot of sense. Also look into the theory of maintaining the right alkaline/acid balance of the body with a view to achieving as much of an alkaline state as possible.
It just shows how each area is different. I get 3-month post chemotherapy check-ups and I have a blood sample taken the week before each appointment. So far - I'm 12 months into remission - I saw the oncology nurse as the CA125 count remained very low. Last time it had increased so I got to see a consultant who asked if I wanted another scan.
I decided not to for the moment but have been given another blood sample bag to take in after 6 weeks to see if the CA125 trend continues.
I think we're all much the same in getting 3-month check-ups for the first couple of years. If there are any worrying symptoms I've been told to get in touch with my oncology nurse and I can see someone straight away. I know they don't like doing too many scans. Often there is a gap between the cancer returning and actually needing any treatment.
I feel much the same as you that it's easy to slip through the net with these oncology appointments and you have to keep on top of when you should be seeing someone.
It sounds as though you've done well on carbo-platin. I did too. I had the same original diagnosis as you - but a later stage - but they changed it last time I went back so it turns out I don't have the aggressive type of tumours. It's really good yours has been identified at such an early stage when it's likely they can knock it on the head.
I'm sorry I didn't see your question for several days.
It's historic really. Apparently I have a high pain threshold. Several years ago bowled into my GP saying I had a bit of a tummy-ache. I had advanced peritonitis and was lucky they caught it in the nick of time or I wouldn't have been here today with cancer instead of appendicitis. He's now warned me I have to take more care and if I have some twinges to tell the oncologist.
I've had a nagging twinge for about 2 months now but it moves. I feel it's post hysterectomy adjustments but mentioned it all the same and I felt they all went into overdrive. Gave me a 2nd blood sample request which I'm meant to take in very soon. My CA125 was 7 at the end of chemotherapy. It went up to 8, then 10 and was 15 at the last check-up after 12 months so in comparison to where I started it's doubled and is going up more rapidly but in comparison to others on the site it's a very healthy score.
As I feel well and I'm trying the Budwig Protocol and have started a better regime of exercise and weight loss I thought I'd see how things go. I feel some of the twinges are stitches stretching as I've put on weight. I have another appointment at the end of January and I'm fine waiting for that really.
The other shorter answer is 'because I have my head in the sand'. lol
I finished my chemo in July and had ca125 done then as it had increased over last two chemos it stayed same at 66. I was not convinced chemo had worked and would have liked a scan but was told there was no reason to have one.
I have not had any more blood tests or scans and won't have till I have symptoms. I am concerned as had a small area of cancer in chest area and I do get discomfort there but have been told could be scar tissue.
I also am concerned that I had a 10cm tumour before I realised anything was wrong.
Yes I do feel ancious I try to ignore the discomfort but it is not going away and think I will push harder for a scan to see if chemo has worked. Will see oncologist in a couple of weeks
My consultant is of the view 3 monthly and a scan if there are symptoms only. i was diagnosed with carcinosarcoma in April after a hysterectomy for a fibroid!
Seeing all the replies and especially the answers from people re my questions when I wonder how many people on the site have this particular ovarian cancer. There is little recent research and I wonder if we could get a feel of the number of women who use this site we could ask Ovacome to help us encourage the setting up some current research even if it is to get some consistancey in response as this is an ODD one
I'm aware of 3 others using this site who have the ovarian carcinosarcoma diagnosis. There could well be others.
Perhaps you could do a posting asking for other winners of this diagnosis to come forward if they would support you in this. I'm reluctant to contact them directly, but I would definitely be in favour.
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