Hi - first question on here - Ive been reading for a little while wondering about asking this but then tonight I came across a reply to someone elses question that included the words ... "We all know that this is not a condition where they ever can say: there, all sorted - though we so *wish* they bloody would." ... and it stopped me in my tracks.
Three weeks ago I had total hysterectomy, ovaries, tubes, cervix and omentum because i had a large tumour which, before the op I had been told was likely to be borderline, but after I was told was cancer. I was told that as the op I had removed all parts that could have been worrying once the pathology results were back, and that as the omentum was clear then nothing more needs to be done at this stage. After everything I had been dreading was possibly about to be happening with me, chemo etc, to be told that its all 'sorted' seems hard for me to accept. I feel worried and keep thinking 'is that it??' 'are you 100% sure??' after all that build up. Dont get me wrong, I know this is better, I know I should be grateful, and I do feel guilty asking this, especially as so many of you ladies are having to cope with the chemo etc. but can this really be it for now? I feel a bit lost.
I was given an appointment for in three months time, and told id have another CT scan in six to re-check a leison found in my lung (which after omentum showed to be clear, I was told is not concerning to my consultant, although still to me) im having blood tests for anemia and to keep an eye on the fragmin effects but thats it. I cant help thinking that surely something more? and three months seems like such a long time.
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purdita
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You've been through the mill with a total hysterectomy and your hormones will be all over the place for a while as you recuperate and recover.
t looks as though you've been lucky. I can promise you they wouldn't tell you 'that's it' if it isn't as full-on Ovarian Cancer is beyond medical science or research and they really don't know how it will go.
You need to build up your strength, do absolutely nothing for six weeks, look after yourself and be pampered. I'd imagine 3 month check-ups are standard for your situation to monitor it for the time being.
I hope with all my heart that this is it for you and that you never have to worry about chemotherapy or other treatments.
Wishing you all the luck in the world. xxxx love Annie
Thanks Annie for replying so quickly. Part of my problem is - having read so much on the net, other peoples stories that have been similar to mine, I havent so far found anyone that didnt have further treatment after. Im hoping I'lln start to feel grateful relief but everything is still a blur yet.
Hi Purdita! I was diagnosed, operated on and histology came back as borderline. That was ten years ago. I know the possibility of it returning is there, but I thank my lucky stars I am still here, healthy and able to pass on my experiences of OC. I was tested with examination and CA125 every month at first, then 3, then 6 monthly then yearly. After 5 years I was discharged but can self-refer if I feel anything is going wrong. Do look after yourself though, as the others say...you've been through some tough experiences
Welcome and so sorry that you are going through this.
I had a borderline tumour and my other girlie bits removed and the pathology came back borderline. I am a healthcare professional in my work life and have researched all of this , too much probably. My understanding is that usually if the disease is confined to one ovary and if all other organs sampled or removed are OK then no further active treatment is needed. Chemotherapy is a lifesaver for millions but is obviously not without its problems. So it definitely sounds as if you have been given the correct advice.
Many other cancers are treated with just surgery , and when you are told that you had something without realising it and then that that is it is a bit freaky and it's not uncommon to feel a bit lost.
I see my consultant every 6 months for an exam and a scan . She does a blood test every 6 months . I had to be assertive to get the information and follow up and there seems to be no one standard.
If you have concerns , I would honestly give yourself a good 6 weeks plus before you do anything. You have had a huge shock and this will take time to get over. If you are feeling really anxious you could ask for the 3 month appointment to be brought forward , or you could write to your consultant with any queries.
At your 3 month check perhaps have a list of questions prepared , we can all help you with that if you want us to. Alternatively your GP should be getting a letter from the hospital which could have more information in it.
This is a great time to recover from an operation , I had mine in early January and I just loved those duvet days ! I have been fine since , nearly here years on and so will you.
Do keep in touch and I hope that you have lots of lovely people around you who will spoil you in he weeks to come.
Love
Charlie
Oh dear Purdita, I feel really terrible as that was my reply you quote, and I really hope I haven't caused undue distress... The thing with OC is that it does seem to be peculiar in nature. When I was diagnosed my oncologist wrote on a letter that while it was possible it could be cured it was most likely to become a chronic condition. When I asked why she said that OC seems to come back in unpredictable ways and is highly individual - so they have to err on the side of caution in making predictions. The terminology has changed these days to describing those post treatment as in remission, not cured. "No evidence of disease" or NED is a phrase I have seen used a lot - it's kind if a statement of absence of something, rather than a definite statement. She said to ignore statistics though - something I think most of us get a bit fixated on at some point.
She did out me on chemo pre- and post-op. Well yours hasn't done that, so I agree though with the above - they must really think you need nothing more right now if they are leaving it. You do not mention stage or grade but I would surmise it was simply not at any of the later spreading stages and they are confident enough in the removal. You should ask for that information, certainly though.
I can imagine it feels very precarious to you. In reality though its no different than what they do with those they put on chemo for a while - after that its off you go, on your own until the next checkup, schedules for which are sometimes 3 months or 6, but again individual. This is highly pertinent for me today, ironically. I have my very last chemo tomorrow then I'm on my own. And trying hard to be calm about it but inwardly quaking at the 'no more treatment' thing. So, believe me, I truly empathise, as do all the others on here who have no doubt had those feelings too. Keep reading here -- follow Anne's advice and focus on healing from the op too -- and don't bottle up the fears.
I was at stage 2c with high grade large tumor that had broke out, I did have six months of chemo after surgary. The day after my operation the macmillon oncologist came to see me and told me all about the surgary and what it meant. He was so positive, he said that by the spring I`d be "All Sorted and finished".
I had another CT scan after the treatment finished which confirmed there was no cancer left. I also went for 12 weekly appointments in the oncology clinic for 18 months after the treatment ended and now I have 16 weekly appointments. I think they keep a close check on us for the first five years. The longer we stay cancer free the better our chances and the lower the stage of the cancer the better our chances too. There can be a cure for this when caught early enough and it sounds that yours has been, hence why no chemo ness.
I do know that the oncologists I have seen are all hopeful for a cure with me which is really quite remarkable considdering the circumstances.
I think what the macmillon oncologist meant that as the surgary went so well they expected a good outcome + by the spring (from October to spring) the treatment would be finished and then really was it.
They can never say thats going to be it forever in a day but I`m sure its gone for now and therefore there is really no more to be done other than keep an eye on us. Yes, it really is done for now sweetheart, get well and enjoy! This sure does change you, you suddenly start to really appreicate the small things and stop sweating over the smaller stuff.
We all have the fears that never really goes but when we can chieve the happiness of the good in life, it sure does help sweetheart.
And you will, we have all been through what you are going through right now and many of us still are doing.
A message to everyone:-
Cancer is a word that cannot be avoided so it is real hard to forget and move forward - I don`t think any of us can actually do that and none of us should expect to either.
There is so much publicity about cancer these days all to raise awareness but sometimes you just don`t want to talk about it or hear about it again, that day comes after you have come through the many other challenges this disease sets for us. It also puts our emotional turmoil on edge, this is so normal too.
I think most of us go through the many stages of dealing with it, one would even with a slight scare.
Its something that scares everyone I feel.
But I have lost three friends in their 40`s suddenly with no illness, none of can tell what our future brings, and we never know when disaster strikes. We just need to pray its no time soon.
I totally understand the question, as I have thought that too especially after reading the Cancer Research UK website. I had a cyst removed which the consultant was confident was benign he was as shocked as me when it came back cancerous. After having my omentum, uterus, remaining ovary and cervix removed the biopsy showed no evidence of cancer as it was contained in the left ovary and cyst which was removed. I start chemo on 3rd Jan as a precaution, and my treatement is considered curative, but I'm still nervous about it. What if it's wrong. My 2 CT scans came back all clear too. The consultant said it's a journey and at the end it will feel strange after all this hurried treatment but to get on with the rest of my life, yet someone else said if it comes back it will be incurable, which does make you feel confused.
I trust my consultant, not over keen on the oncologist though, and although I really don't want to go am starting the chemo next week, they said it may be I am having chemo needlessly but it's better to be sure there was no contamination during the first surgery.
I'm sure that it will be in the back of my mind for every niggle and wish I had taken the pill even though my husband has had a vasectomy, just to protect myself, for the last few years.
Take the word of the expert for it, if they say they have no concerns then be happy, and enjoy your life.
Hi, thanks so much to you all for taking the time to message me back. You've really helped. Ive read and re-read ... and re-read again. It does make sense to me, lots of what you've said, but it still doesnt seem real all this.
I think the time of year makes it that way too, a bit unreal I mean. I think how can this possibly be happening now - with all the chrismas stuff going on too? Ive four kids, the smallest two at 9 and 6 so all the usual christmas stuff still has to be done. I suppose thats a good thing because given too much time Im fairly sure I would have wanted to crawl into a corner and bawl my eyes out.
I caved in and spoke to the macmillan nurse the other day too, asked her a list of questions I had been nervous to ask before and she reassured me some - well it was actually my darling husband that spoke to her - I feel very odd about talking to her personally - if it doesnt sound a bit crackers I feel a bit like I shouldnt be mithering her now as the cancer has gone hasnt it, so I cant help feeling nuisancy. Its likely I misread the situation the day I got the results because I was a bit of a wreck that day, but It did feel a bit like I was being shuffled out ... 'right youre all done .... next pls' and I was still feeling the 'what?', 'why?', 'why me?' and 'what now?' frenzy.
I received a book, sent to me by the hospital, called 'What now' but Im not sure it helps me, more ladies who've got a way to go with their treatment. Im wondering how I should feel myself now - should I just shake myself up and get on like nothing happened? Maybe thats the way?
PRchick/Sue, please dont worry - it was a good thing I read your comment, it made me make the first step to contacting you ladies on here properly and Im certain itll be good to be able to talk some things over on here. I hope yr last chemo went ok and that your managing the end of treatment ok.
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How quickly do you get scan results?!
Very quick and drastic rise in CA125! 
Monitoring after Chemo finishes
Quick update - haven't posted for long time
