Just an update on my situation, I had an appointment to see the chest specialist today. I had a plural effusion and have had 4 chest drains since March. He was a lovely guy, sent me for an x-ray and that was perfect, thankfully. He asked me did I have my results yet and I said "no". Well he said there was cancer found in the tumor, ( I had a full hysterectomy 3 weeks ago). He said you may not need chemo but he said I will leave that to your gynae consultant. I dont know how to react to this. I have to wait another week to see the consultant and this is killing me, knowing that the results are in but not being told the full story. I was relieved at first but now I am bloody mad that they can leave a person hanging in the air. I think I will ring the oncology nurse tomorrow and ask her what's the score... I am angry with myself first and foremost for not asking him more questions, but to be honest he caught me on the hop and was not expecting him to give me any type of results. On top of that I was carrying shopping (I know) and i feel that my side is going to burst with pain at the site I had the drain in (abdomen).. Am I blowing things out of proportion.. Sorry Ladies for ranting but I had to tell someone that understands what it's like. Thanks for reading this far, I know so many of you are going through a most horrible experience, but its so great to be able to put this down and read it out loud. Best wishes to you all..
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Damelza
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They could be waiting for full histology for staging. I must say they never seem that hurried and it's so frustrating. However if I learned one thing. Post op they won't start chemo for about six weeks if they advise it at all. So take some time to be kind to yourself. It's a long haul regardless of where you are at. Keep posting its good for sanity
I dont think any of us ask the right questions when the C bomb is dropped so you are not being silky just human. Its a shame you wasnt told by a gynae specialist. I typed a list of questions for my apptappt today. I felt rude consulting my piece of paper but people have questions when they buy a new car!!!! I hope the waiting passes quickly. X
I did exactly the same, had an A4 sheet of paper with loads of questions and things to clarify all under different headings such as diagnosis, type, stage grade, treatment, chemo, follow up
I didn't want to be left uninformed or with more questions at home later .
I would always say Ask, Ask, Ask, it is our body and we must have the info.
Clare x
It really saddens me that there are so many posts like yours. It's as if no really knows. They just literally read a note in front of them unaware of the impact on the patient. They must deal with this all the time why can't they fit see your questions/ concerns and tell you what you need to know. I would definitely call your nurse. I hope you get some answers.
It makes me want to try and do something when I recover for ovarian cancer awareness. Xx
You've been left with loads of questions I imagine and that's not good. I would ring your Surgeons office and let them know what the other Doc said and ask what's going on. They will be able to share what they have to date and also answer your questions so make a list.
I wasn't diagnosed until the full Pathology report came through after surgery and as the frozen section showed no cancer I was sub optimally staged as no lymph nodes were sampled. My surgery was 8th March this year and I received my diagniosis on 17th March so it took 9 days for the full report came through in.
It's not good enough for that Dr to tell you there was cancer and to leave you in limbo and in shock.
Never apologise for having a rant, I believe all us ladies have the right to have a good rant particularly when you feel you are not being informed or we have a bad day. Ensure you write questions down ready for your appointment I had an A4 piece of paper full of questions, I believe it helped my Dr as he seemed quite nervous and I think he was happy for me to ask the awkward questions.
I was informed last Thursday that I will have my surgery 3 -4 weeks post my next chemo, but I didn't ask where the surgery will take place, as the hospital I attend is for chemo only.
You'll find many people say here that waiting for results and treatment options is one of the worst times. I often come out annoyed with myself for not asking more. My last but one appointment Ingot just out lf the door three times and went back in again to ask more. In sometimes take a list but that doesn't work if they tell me something unexpected. I hope you can get more info from the team before the weekend x
I too was told very clumsily (inadvertently over the phone at teatime by a Macmillan Nurse ) and was left with lots of questions and still in shock despite strongly suspecting I knew I had cancer. It's rotten being left in limbo with so many unanswered questions. Perhaps ring Ruth the Ovacome Nurse. She won't be able to give specifics for yourself but she will at least be able to give you time to talk and answer general questions that you have.
Hope you get to see your Gynae soon to get a plan of action.
Hi, waiting, as the other ladies have said is the hard part. Once a plan is in place you feel easier. Phone your gynae cons secretary. Tell her what you have been told, you are very worried and you would like either the consultant or his nurse specialist to contact you asap.
As if pleural effusions aren't bad enough!! Horrid ghastly nightmare things. Although my situation was also very frustrating, the lung team did arrange blood tests and scans fairly quickly, although at the time it seemed like an age. It was my CA 125 marker that came back high at 2065 - at that point and in retrospect I should have asked for a referral to a Gynae Oncologist, but like you I was naive. The tests from the fluid come back some weeks later confirming cancer cells and from there on I was kept in what seemed a never ending loop which delayed my treatment.
You can ask for a referral to another specialist hospital. I did and I've not looked back since. As LA says they are likely waiting for the histology results of your op. Push for them. Once armed with those you can proceed in which direction that benefits you. I had 4 chemo then the op and just had chemo 5. You could ask why you weren't referred to an oncologist once they had the fluid results back...and did they do blood tests? Get dates and write it all down in order. Speak slowly and listen and if you don't understand the answer, ask again. This will help you map out were the delays were and how you can go forward.
What was your CA125 marker showing? If it was high, why were you not alerted sooner? Take someone with you to the consultation - or put your phone on loudspeaker and have a friend present - they can ask the questions you forget to.
Don't be hard on yourself please. This isn't your fault. You aren't the expert here and how would you have known what to ask anyway? At least you are here now where the resources and experiences of others are pure gold dust. I don't know how I would have survived thus far without it.
Ruth and the other Ovacome nurses in the team are marvellous and are good listeners if you need an ear. It is a very emotional time.
I would suggest you don't carry anything heavier than a cup of tea until your body heals. You have just undergone major surgery.
Hey, rant on, but this is not unusual, Cancer cells were found in my drained liquid, had my op and it was 6 weeks before I started Carbo /Taxol,so this is the norm. And so far I am in remission 14 months after the end of chemo.
Waiting is the hard part, but, talk to all the experts you can as we all have different journeys, just take it easy and take each day (and enjoy) each day as it comes,
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Halfway through, cold cap and scan results
6 month check up and elevated CA125 !
Update on my ongoing saga.. first think endometria.. 2 months later now maybe a Dermoid!! - but not linked to intermenstrual bleeding??
Thank you
