Scan Delay - follow up

Thank you all for the replies on my scan delay question.

Not sure if this is a question or a blog but here goes.

I saw my Oncologist at the beginning of the month for first follow up and as I suspected "it's back".

I have now had the scan and will see my oncologist on Monday and have an appointment for chemo that same afternoon.

However over these intervening three weeks I have ballooned, had strabing pains, back pains and going to the GP had a water test that showed blood in the urine.

I have rung my specialist nurse a number of times explaining how much worse I am.

I am so worried that this delay has made my chances of any sort of remission disappear.

How come I keep reading a delay makes no difference?

Surely treating me while there's less of the xxxxx cells is more beneficial.

Symptoms are much worse than I was at the start of this month, then it was a bit stabby and a CA125 of 180.

So not sure what my real question is, no point asking at the hospital they are not going to say "Oh dear we should have got you in earlier, shame about that" are they?

Sorry this is a long post, difficult to get everything that happens and my desperation across.

13 Replies

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  • Hi I am so sorry that your cancer is back...but it would seem like (to me anyway) that it hadn't gone in the first place because isn't this your first checkup after chemo? It must be a worry for you..you could give the ovacome helpline a ring thy are very well informed and will put your mind at rest....speak to Ruth Payne tel 0845 371 0554 if she can she will give you the answers to your questions better than any of us can...best wishes love x G x

  • Yes your right it probably never went away, at the end of treatment my CA125 was 18, two months later at first checkup it was 180. I spoke to Ruth when I was concerned about the delay but not so bloated or painful. She was helpful, but at the end of the day all I can do is ring my allocated nurse and sectretary who while sympathetic I suspect (reasonably) that the chemo Dr says "she's coming in Monday anyway".

    I am not in agony or an emergency.

    I know the chemo Dr plan is to start weekly taxol next Monday, depending on scan results.

    I guess I'm looking for reassurance that a few weeks delay hasn't tipped my chances over the edge.

    I appreciate this forum is not for medical advice, and I think this is a bit of a moan rather than a proper question from me (sorry).

    Just feel this last week where it is back with a vengeance, symptom wise, could have been avoided if the scan had been sooner.

    Anyway thanks for the reply and hope I don't come across as a moaning Minnie.

    Thanks

    Sheila

  • Hi Sheila,

    Don't be sorry... if you want reassurance that's fine ...if it's any consolation my oncologist ignored my recurrence for over a year before I eventually got treated... and I am now in remission again :-) I hope this helps you to know this.... sending you love and best wishes x G x :-)

  • Ps No you don't come across as a moaning Minnie love G

  • Hi Sheila, I think delaying is to do with the efficacy of the chemo, if it is started too soon after the last one, and maybe 'killing more birds with one stone'. When I had a pet scan last year it revealed it was beginning to get active all over the place, where as the ct scan revealed a growth but it was unclear if it was cancer, well it was and just as well I started chemo quickly on that occasion, hope you find some peace in all this, love Diane xxx

  • According to the Mount Vernon research, delaying chemo until you have symptoms has no effect on the outcome of treatment. But I do understand how you feel. I think Gwyn makes an important point, which might be worthwhile discussing with your consultant. I hope it goes well on Monday.

  • Hi Sheila!

    No such thing as a 'moaning minnie' on this site!

    If my CA125 is under 30 it is classed as 'normal' I started out at 11,000!

    I am resisting another 'moan' at present because, despite a 'normal' CA125 test I still have 'symptoms' supposedly the effect of painkillers for my draggy sciatica which they say has no connection with the chemo.I never had it before and so many on this site are experiencing back leg & joint pains!

    I know we are a self selecting group but perhaps we should collect some data on symptoms and after effects!

    Margaret!

  • Hi Sheila

    Moan away. That's what this site is here for. I don't post much but always follow what is going on with you all. I, too, waited a good few months after my first recurrence before I started treatment (October last year). It all went well and I went into remission again in April this year. Unfortunately following a scan I had last week (which I only had because I am on a trial drug and it is part of the regime!) I have discovered that my OC is back and my CA125 has gone up to 52 (from 7 in July). I have been experiencing bowel problems, but was told this could be due to side effects of the trial drug - which I have now obviously stopped taking as it didn't do any bloody good! (no apologies for language - that's exactly how I feel!)

    I have decided, after taking advice from my Onc Dr, to 'wait and see' how things develop for a while as no serious symptoms at the moment. I am happy to do this again as I dont want chemo just yet. I know I will need it in the near future but want to delay as long as possible as I think this is best for me. This is my personal opinion based on my results and symptoms, but each of us is different and must make our own decisions based on what our bodies tell us and also the advice of our professionals - in whose hands we place our trust and indeed our lives!!

    Hope all goes well for you on Monday and your treatment does its job and blasts the nasty little blighters to smithereens!!!

    Colette xxxxxx

  • Hi Collette, it is good to see you 'come out of the closet' on here, everyone counts, you must be cheesed off about the trial, how long were you on that, I suppose we never know if something has slowed the growth down although not bringing remission, I finished 5 mths of chemo, 3 months ago and it is back, so another scan in November 26th, so no rush there. I don't mind but my symptoms are worsening quite quickly, fight on :) love Diane xxx

  • Hi Diane, so sorry to hear about your recurrence. I know you have had one or two recurrences before so I can relate to your feelings. This is my 2nd recurrence - finished last session in April. I had been on the trial drug since start of last chemo in Oct 2011 and would have continued on it until next April I think. Not sure if it had any effect at all, but then I will never know if I was on the 'real' drug or a placebo!

    I have a follow-up appointment on 5 December but I can bring that forward at any time if my symptoms get any worse. I dont really know whether any of my current, vague, symptoms are related as I have had bowel problems since my surgery in 2009.

    Good luck for your scan. I'll keep in touch on the site and we can compare notes if you like. Love Colette xxxxx :)

  • Thank you Collette, yes, do lets stay in touch, you are right 3rd recurrence for me although i think these last two times I wasn't really in remission.

    I think I should get in touch with my Dr tomorrow. It is difficult knowing what is causing the vague symptoms, a lot of it goes with the territory I can't expect 100% health really but severe pain is an indicator, I have got pain increasing in the last few days just like it was last year, love to you Collette xxxx :)

  • Dear Fats

    I'm really sorry you're feeling so worried. I think it's pretty common to leave having chemotherapy for as long as possible and this won't mean the next lot won't be effective - or less effective because of the delay.

    What does strike me is that you're not getting the reassurance and time you need at your local hospital to answer your queries. I think you should make a list of the worries you've got and go in with it. Explain how you've been so worried and check who you can ring to give you decent advice. The specialist's secretary will be no use to you. Have you been allocated an oncology nurse at your local hospital? You should take a note of the name and telephone number and get in touch with them - but you can also ring Ovacome. They are really knowledgeable and will give you lots of information and reassurance.

    Hope you can get the information you so badly need.

    love Annie xxxx

  • Thank you all for your replies and support, I had the results of the scan the other day and things are not as bad as I feared.

    Some increase in the capsules on the liver.

    Decrease on lymph nodes that had been enlarged on previous scan.

    No activity on that attached to the bowel surface.

    No sign anywhere else.

    So have just started round two with a session of weekly taxol for six weeks then a scan to see where we are.

    At the moment I am riding high on the steroids given with the chemo.

    If it had not been for the pain and constipation I might have coped better in these weeks between checkup and treatment starting but thank you all for your support.

    Sheila

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