I feel like I am living in the twilight zone of knowing I have recurrence but waiting for the chemotherapy to be commenced. Recurrance noted last October and last oncology clinic in July, Ca125 jumped up fourfold to 108 , having previously been on watchful waiting with a slow rise in Ca125 since June 2011. Diagnosed stage 4 in 2007 and been stable for 4 years. Supposed to have had CTscan, review and possibly start carbo/taxol couple of weeks after. Four weeks have gone by and no scan date, so I rang up and haha no referral could be found. Anyway eventually I have one for end of August and follow up appointment in middle September. I understand the timing issue of chemo and that a few extra weeks will make no difference after all this time but the frustration of it all. I know I am lucky to have had such a long time inbetween and at this moment manage without the chemo for as long as possible but I obviously want the best chance available. Does this seem a long wait to anybody else to be on the "watchful waiting" regime irrespective of the mix up on the scan.
I am one of the support line nurses at Ovacome and I am sorry to hear of the trouble you have experienced and having to chase up appoinments. It is very hard that you have to cope not only with the cancer recurring but also having to chase up the hospital for investigations etc. One question I would like to ask is are you experiencing any symptoms? - if you are I think it is worth pushing for something to be done sooner. If not it may still be worth telling the scanning department that you would be willing to take a cancellation if one comes up for the CT scan.
It can be very difficult dealing with the fact that you are aware that something is going on but nothing is being done about it- as you say living in a twilight zone You might like to give Ovacome a ring to talk this through or you may want ot get in touch with your specialist nurse as she will be aware of your medical history. One point I would suggest you might want to latch on to is that it sounds as if the cancer is moving very slowly as the Ca125 has been going up since last June and it sounds as if you are relatively well
Please get back to us if we can help further and al the very best
Ruth
Hi. Just to say I'm sorry you're going through this. I hope you get some answers soon and, if and when chemo starts, I hope it is effective and gives you another really long remission.
I am in the same position as you only I started my second line treatment on Wednesday of this week after only 6 months remission but even so symptoms were starting before I even got to six months so I think because of this and after having a scan my treatment started quite quickly. I know that they like to wait for symptons to appear but at least now you have your scan date and follow up appointment, always remember though we girls know our own body best and I think we know when something is not right, only we can get this through to the oncologists and push for answers rather than sit at home with the constant worry. Very good luck with the scan and for the future.
Hugs
Bettyann
Hi Northern Girl
So sorry you have had a recurrance and are having to deal with the waiting. It must be very stressful but end of August is not so far away. Hope your treatment goes well and you get into another long remission.
Just wanted to say I am sorry you are having all this worry. I will be thinking of you and wishing for a better, speedier response. I would give Ruth a ring. She may well have some practical suggestions for you to speed things up. It's enough to worry about recurrence without having to battle the system!
Love Wendy xx
It's good that you had such a long period free of disease. Have you - or has your onc - considered surgery? Apparently if surgery is possible it gives you a better chance of a longer remission post treatment. It is a very difficult time for you, but please hold onto the thought that because of your long first remission you are likely to have another good remission. This isn't just a guess, I've read a study that reported that after three years free of disease, the odds are in favour of another period of complete remission.
I wa just thinking this morning I hadn't seen anything from you and I should message you then this post showed up! Funny how that goes isn't it.
Poor you having to chase up appointments. It's enough coping with this without having to do the hospitals work as well.
My ca125 is rising since finishing my last chemo in march but as I feel well and have no symptoms I have had the summer off and will start chemo again in September. I have read loads of stuff which says it makes no difference waiting until symptoms start rather than when ca125 starts to rise. As other ladies have said because you had good results last time round you should get a good remission again.
My ca125 was 500 in April so I expect it will be over 1,000 by September. I have a scan next week and see my onc on 5th September. It looks like we will be having treatment together so maybe we can be each others support!
Just want to commiserate with you and your "watch and wait" situation. It's hard not to feel rather neglected and frightened and to think that you would maybe be better off starting Chemo quickly. I'm in a similar position.
My Oncologist has been telling me that I shall have no more chemo, despite having more tumours in my pelvis and back, plus some in my Lymph nodes, confirmed June 2011. He said the same again last December and also when I saw him recently - best do nothing. When I said it's very hard, not knowing what's going on in my body, suppose the lumps start pressing on vital things, he agreed to a scan , which I had on the 26th July.He said he will write with the results, which I haven't yet received - and that I should keep my appointment for October. However, whatever the outcome, unless things were causing a lot of pain, there will STILL be no more Chemo. I do get back pain from a tumour and sometimes a pain in the lower left side of my pelvis, but nothing I can't cope with, so I try and tell myself that maybe he's right. At least I don't have to cope with chemo side affects. Mind you, I do have my moments when I just can't see the logic in waiting for lumps to grow bigger !! Incidently, he doesn't even order Ca 125 blood tests for me - says they're not reliable
A couple of months ago I went to my follow up appointment told my consultant not been feeling well although my CA125 has been falling. I've had a CT scan which was inconclusive but showed some changes to my liver and in the pelvis. I then had to wait for them to discuss my case at MDT, then for an MRI/Ultrasound appointment which I had to chase up twice. Last Friday I went for my ultrasound and MRI only to be told that ultrasound wasn't conclusive enough for them to be able to say what is on my liver but luckily they were able to squeeze me in for a liver MRI as well as an MRI of my pelvis. I'm hoping to finally get the results this Thursday so I know how it feels being in the Twilight Zone
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