Good morning lovely ladies. Big virtual hugs for everyone. I am so pleased to see that most of you ladies are being kept informed/in contact even though you may not now be getting the treatment you would like or your scans and tests. I just wish I could say the same. At my last 4 month appointment I was told that my CA125 had risen again and the recent u/s showed something suspicious in my abdomen. Now I may be being paranoid but the last time I heard those words it turned out I had a stage 3c ovarian carcinosarcoma with a CA125 of just 130. My oncologist arranged a priority scan and follow up appointment which were both cancelled on 17th February. I was told that gynae/oncology would be in touch with info. I waited two weeks and heard nothing. So I tried to contact everyone on the oncology team I could think of but no-one has rung me back. I did receive a computer generated letter a week ago moving my 4 month appointment from June to July (if that happens) and a call from CT scan just to tell me that I was still on the list but I would have a long wait as it was not a priority request. When did that happen? None if this is very reassuring. So here's the thing, I was told by oncologist that as carcinosarcoma is a rare and very aggressive cancer and CA125 is not a good indicator for me they would start investigating a bit earlier than usual if it started rising and, indeed, this was beginning to happen. The u/s indicates that there may be a recurrence but I can't get anyone to talk to me about my concerns Now of course I am driving myself insane with worry and frustration. I don't want to wish a recurrence on myself but I'm building this up in my head and every twinge and ache is something ominous. Intellectually I know the risks of continuing investigations but I can't help feeling I've been abandoned and written off. My hospital is probably overwhelmed but the silence and the not knowing us driving me nuts and causing my family to worry about me.
I've just realised how long this post is - sorry. I think I've just got to the stage where I needed to vent in another direction and give my family a break.
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Mumsie13
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Hi! I can totally understand your worry, I would be exactly the same. Have you tried to speak to your nurse specialist or GP about your concerns? Maybe they could try and chase things up for you. Lots of love xx
Thanks for your reply and concern. I have tried literally everyone. If there is still a nurse specialist in gynae/onc she is not responding to messages and my GP centre is totally overwhelmed at the moment. I have just read the NICE guidelines someone posted here and confirms what I suspected for a while now - I am somewhere in the bottom three.. But goodness me, someone was quick off the mark, the guideline was only published on 17th February and my CT scan and oncology followup were cancelled the same day. Lots of hugs. Jackie
Hi Jackie are you UK based? If you cannot get an answer from your CNS can you not get in touch with PALS at the hospital. Understandingly you need to know what is going on and need reassurance . My oncologist always says the majority of the time it's the not knowing if what is going on than the knowing. Keep in trying the Specialist nurse....don't give up.....I understand how you feel and you need some questions asap. Let me know hoe you get on.xxx
I made a mistake with the dates. My appointments were cancelled on 17 March not February it just seems that long. I hope you all didn't think I was being overly dramatic. I am UK based and I have now looked at the PALS website at my hospital and it all seems a bit official - investigations and whatnot. If they actually think my concerns are legitimate in these strange and unusual times then this procedure seems likely to make a lot of waves. I think I will at least give everyone one more try before I resort to this. At least I can now tell my onc team and GP that I have read the NICE guidelines and that I am really concerned that I haven't been contacted. I didn't have this information before. I am certainly not going to give up - it's not in my nature. Thanks for your support and advice, it is much appreciated.
So sorry about your predicament, and things like this do not help us to stay calm.
I had a similar experience as the MDT meeting was Wednesday & the MacMillan specialist nurse promised to call me and let me know the outcome. I have transferred to another hospital as we moved house about 18months ago. I did not receive that call,so I sent an email to her and she responded very quickly telling me that because I was not a patient at the same hospital now she could not listen in to the MDT meeting. Well it would have been nice if she had messaged me to tell me that. Anyway I looked online and typed in Macmillan nurses at the hospital I now to attend and saw on there that there is a co-ordinater. So I sent her an email and she responded straight away saying that she would track the specialist nurse down. That was on Thursday this week,and I still did not hear, so on Friday after 12 midday I sent her another message stating that it would be nice to hear something before the w/e. About an hour or so later she came back and said that the reason I had not heard anything was because the Clinicians were still discussing my case. At the end of all this last evening I did receive the call from the lead Oncologist which put my mind at rest, after a long conversation.
What I am saying is do not give up, because someone should call you. I respect that they are all very busy, but that should not be an excuse.
I hope that you hear something very soon. Take care.xx
Thanks for your reply and support - it means a lot. I am so pleased that you have got your answers even if you had to work so hard for them! Obviously it pays to be persistent. I think you are right being busy shouldn't be an excuse. I imagine they are not seeing many patients and it doesn't take long to call to discuss the action that's being taken, or not, as the case may be.
Hello Mumsie13, I would second what another post has said which is to contact PALS first thing tomorrow and say you want a reply by Wednesday this week. I think the wait is unacceptable regardless of whether people are self isolating. All you need in the first instance is a phone call. Surely somebody can do that. I've found even before CV hit us that often we have to be pushy and assertive to often get anywhere and for things to happen sooner rather than later. Good luck and keep us informed x
Thanks for your reply. Several of you have suggested PALS. As I stated in these replies I made a bit of a mistake with the dates. All I can say is that time is moving very slowly and not knowing whether the cancer is back or not just sucks. Any I am going to use PALS as a last resort I think. I shall try to contact onc team, GP etc again next week and see how it goes. I have to say that it has just occurred to me that as my next 4 month check-up has been moved from June to July they are not planning on discussing anything with me any time soon. Hope that's not the case. I will keep in touch and thanks for your support and advice.
First of all Giant hug being sent to you. I totally agree with the last 2 posts, I'm afraid you have to be pushy and assertive sometimes to get to talk to someone. If you can't get an answer on the usual phone numbers then go by the switchboard and be insistent don't let them fob you off. Also sorry about your GP being busy but get them involved as well, it's their job and they have leverage which you don't have. All these people can do a lot in very little time. Go to it girl! All the very best and I hope you are okay. Sue xx
Thanks for your reply and support. It means so much at the moment. I got the dates wrong - not as long as I thought, it just seems it. Someone on this thread mentions that we feel so guilty for being assertive and we shouldn't. How true that is. I just want to know where I stand regarding diagnosis and possible treatment. Being left in limbo like this certainly isn't good for my health. Anyway, I am going to take everyone's addvice and contact my onc team, GP etc., again next week before I even consider trying PALS. Lets just hope I get a response this time.
In case of any use there is a trial at the Royal Marsden called Atari and I’m told that they have continued to recruit despite the Coronavirus. The trial is for clear cell but there is an arm for carcinosarcoma. The drug is AZD 6738 plus Opaparib. I have clear cell and have been on single agent AZD 6738 for the last 27 months and have so far maintained a partial response.
Thank you for your reply, it means a lot. Well this is very interesting. Being so rare, they know so very little about cacinosarcoma. With chemo I think its still a case of hit it with everything and see what happens. I live in the Midlands so I think this is probably out of the question at the moment. I have taken a note of the details. Once we find out what's going on with me and lockdown is over, (hopefully not too late for me or a trial), I will definitely enquire into this. There are so few of us with this cancer that it is not easy to carry out proper trials. Thanks for your thoughtful response.
I'm in the UK. Unfortunately the area where I live has had the biggest jump in deaths since reporting started so your kind thoughts are very much appreciated. I think we all must be feeling a little helpless now so it's reassuring to know that we are not alone in this.
Can I just apologise. I got the date of cancellation of my appointments wrong. It was in fact 17th March. It made the wait look longer than it is. February was when I had my last scheduled 4 month check-up and before COVID-19 kicked off in the UK. Perhaps I am being a little impatient.
I don’t think you are! All you want is communication which I think you’re entitled too. We always feel guilty and we shouldn’t! Take care and a virtual hug from me, sticky3006 x
Just a little information about the situation where I live in the Midlnds. It has been confirmed that we now have the highest rate of deaths in the UK. Many of our hospitals are seriously overwhelmed and the cracks are definitely showing. It has recently been brought home to us how serious things are with the NHS. A friend of ours, who is well over 70 years old, fractured his right femur a week ago and although getting an ambulance wasn't a problem finding an A and E that would take him was. The paramedics were turned away from five hospitals before they found one that would, reluctantly, take him. It was a while before our friend actually found out where he was and it turns out he was over 30 miles from his home. He said the staff are marvellous considering how stretched they are but he couldn't wait to get home. I have nothing but admiration for our NHS frontline staff. How they carry on day in day out with diminishing resources is beyond me. I just wonder how long they can carry on. Well that turned out to be a little depressing. I hope I have something far more positive to say the next time I post on this forum.
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