I have a recurring ovarian cancer. I'm treatable but not curable.I had radiotherapy in January to reduce a recurrence and my Ca125 went down to 21. It's now 48 ash's I'm told I can't have a scan until I have symptoms which strikes me as odd. I was having 3 monthly scans and was expecting one next month. But that's not likely to happen.
I'm told this is because any further chemo I have won't be as successful as the first one. The second chemo only was affective for 4 months. So they are in no rush to start chemo again.
I could have radiotherapy if any new growth is in the same place, but without a scan we won't know if that's the case.
I can continue with blood tests which may be helpful and I see my oncologist in August. But to wait for symptoms seems ridiculous.
Is this normal? Thanks
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loobilou
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Hello loobilou, it is pretty normal to wait for symptoms. As chemo becomes less and less effective over time, the longer you can go between chemos the better.
However, patients often find this approach difficult. The medics know the science but they don’t know how it feels to live this.
I think your best bet is to talk about how you are feeling and the impact on you of not knowing what is happening. xx
I have had 2 recurrences,completed chemo August 2022. I had a CTscan April 26 this year,and on 5 June had a PET scan. As yet I have no symptoms, but do have a node which has increased in size in the para aorta.I am on watch and wait and due a further CT scan in 3 months.I know that different Oncologists have different ideas because when I was diagnosed in 2015 which was in Wales, I had very few scans, but did have blood test each month.
It is true what Lyndy said, that they try and keep you out of chemo as long as possible,which is good.
I had a second opinion last year, and was told they look at three things, how well you feel, symptoms, and CA125 .
Personally if it was me ld get a second opinion they obviously don't think it anything too worry about .But their not in our shoes and we do. And its your body , hope all goes well and dont worry it not hard too get a second opinion just different eyes and approach. Good luck love SheilaFxx
Hi - I would ask for a face to face consultation, if possible, explain that not getting a scan is causing you great anxiety, and ask if they can reconsider. Can you also email this to them so that you have on record your requests and conversations? Good luck! Xx
Well it would seem a scan every 3 months is pretty standard altho periodically they do a pet scan instead. If your body says do a scan I would pursue it. Good luck
Hi Loubilou, Yesterday, I went to a talk by Henry Marsh, the famous brain surgeon now diagnosed with prostate cancer but presently in remission, and he was asked what piece of advice he would give to a patient. "The squeaky wheel gets oiled. Press your point and don't give up." So, if a scan is what you want, you will have to press your point and, if not from your present team, then consult a second opinion, which you are fully entitled to do under the NHS. With all good wishes, Emma x
Hi - according to what my CNS told me, yes apparently it is. I was diagnosed as Stage IIIc low grade serous ovarian.o.c. in November '21. I subsequently had debulking surgery, followed by 3-weekly Carbo-taxol over 18 weeks. A CT scan was done 3-monthly; however, at my post-chemo follow-up I too was surprised to hear that as the last scan showed "no disease present" I would not be scanned again for six months. Unfortunately, the next scan six months later detected an abnormality, so I am on watchful waiting for 3 months with another CT scan then with follow-up.
Sorry to hear about your diagnosis. Stage IIIc low grade serous ovarian. [edited by moderator] I was dignosed 5 years ago. Cancer came back 3 years later. Now I'm in remission. I get a cat scan every three months. Good antibiotic, haga and Turkey tail help me through journey. Also celery juice
first thing in the morning and not drink liquid for 20 minutes helps me with my stomach issues. Pure miracle. None of the prescriptions helped. [I] stay away from sugar [edited by moderator]. I hoped this helps. Hope she feels better soon.
Thank you marmay 88o for the interesting information you have given. I'm mostly able to maintain a positive outlook on life since diagnosis; however, naturally am anxious when a new deveopment arises. I am aware that cancer thrives on sugar, so try to keep my intake to a minimum. You do not mention any medico therapy tried, so I assume you had opted for the alternative regimes you have given. I wish you continued success through your journey. Best Wishes.
You always have the right to a second opinion on the NHS. (Your nurse agreeing with your consultant doesn't count!) It sounds as if a second opinion might help you, as recurrent disease and low grade disease (which also doesn't respond very well to chemo) can be managed in different ways. You might find someone else's approach works better for you. Sending hugs!
i’m in a similar boat. I just underwent fourth line treatment for OVCA. . Tumors had located in my psoas muscle. My CA 125 went from 47 to 72 in six weeks. I’m going to insist on a PET scan. If you can’t get what you want at your current facility, maybe try a different oncologist? I wonder if it’s a medical billing issue …… Wishing you the Best.
Lots of good input on here so I'll just add, wonder if an ultrasound would be of any use to the oncologist in the meantime, and give you some answers, if the CT isn't preferred at this time? All the best.
Thank you for your post. I can see that many members of the forum community have shared their thoughts and experiences regarding this which I hope has been helpful. It’s also good to learn that you have had a useful conversation with a Macmillan nurse about this.
I just wanted to let you know about Ovacome’s information booklet about treatments for relapsed ovarian cancer which can be found here on our website: ovacome.org.uk/treatments-f... . This explains:
‘You may have signs that your cancer has come back, such as a rising level of the cancer marker CA125, or there may be signs of disease on a scan.
Sometimes you might have symptoms that are like the original symptoms you noticed, such as bloating. But you might have no symptoms at all. In this situation your medical team may suggest waiting until you do experience symptoms before starting any treatment. This is because research has shown that starting treatment before symptoms develop does not improve the treatment’s results.
Waiting for symptoms to begin can allow you to maximise the time between treatments and have a longer time of feeling well. If you find it too worrying to wait for symptoms to show before beginning treatment, you can discuss this with your medical team.’
We can also send this to you in the post, free of charge, if you prefer.
Several members have mentioned second opinions in this thread. Ovacome has an information resource about this too, if you would like to learn more. It can be found here: ovacome.org.uk/getting-a-se...
I hope this is helpful and that a conversation with your oncologist or clinical nurse specialist may be able to provide more insight into their recommendations. Please don’t hesitate to contact us if you have any further questions or would like to talk things through. We’re here Monday – Friday, 10am – 5pm, to help with queries or just have a chat about anything that’s on your mind. You can message us directly through this forum, email us via support@ovacome.org.uk or give us a call on 0800 008 7054.
Thank you so much Annie, that makes a lot of sense and concurs with what I was told by the Macmillan nurses here in the UK. Much appreciated. Best wishes.
I'm curious to know which hospital you're at. I had to diagnose my own recurrence as my team (inc CNS) told me I would not even get a scan annually unless I had symptoms but I had a friend with the exact same cancer as me (two aggressive types) and she was getting three- month scans at her hospital as a matter of course. My CNS added that my cancer was 80% likely to recur! They told me to book an appointment with my GP. I did have symptoms and in the end they agreed to see me and could tell just by palpating my stomach that the cancer had returned.
I'd had a consultation in April when no one did an examination and think the cancer could probably been found then if they had done.
It isn't fair - and no one seems to care - that some hospitals are proactive and others make you wait and see. Especially with this cancer.
But perhaps you should do what other people have previously advised, give them some symptoms.
What type of OC do you have?
I really hope that you pursue this. [Edited by moderator] Holding off treatment is ok and there might be science behind it but you could still have a scan and that might give you peace of mind or show you what you're dealing with.
Fingers crossed, stay strong. Do you have a family member who can accompany you in August? Taking someone along makes me feel stronger. And make sure they do an examination.
Thanks Candy, sorry you've had such a rough time of it . I'm in Brighton, in the UK. If you look at the reply from Ovacome above you'll find contact details. They may be able to help you. Their comments make sense to me. I've added an image from my oncologist of the type I have, though I think it's gone to the top of the page! I'll try again..
Yes I have a good friend who always comes with me. Hope you have good support too xx
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