I'm 25, I got my first screening letter and booked myself in, this was less than 2 months ago. Now I have been told I have cancer (only 4 days ago) and that I am waiting to see what stage my cancer is at. I find out on the 9th of June with I know doesn't seem like a long time away but right now it feels like a life time away and a life time of wadding through treacle. Until today I was fine, I was actually confused why I was taking it so well. Then I read through my mcmillan pack and it has all become VERY real and really hard to deal with. I just wondered if anyone had any advice on how they got through there 'waiting game'?
My nurse was supposed to call me today to introduce herself as she has been away on holiday and I haven't heard a sound, I'm scared, feel very alone as my family doesn't talk about feelings and just want the wait to be over. If only I could wake up and it be the decision day of what the plan is for my care/treatment.
I have been told that if it hasn't spread it should be stage 1B but am waiting on a MRI and CT Scan to work find out if its 1B1 or 1B2 and whether my tumour is small enough to have a trachelectomy. I feel very very lucky if I can but it's also very hard to not worry about it being worse. Then I don't really understand the treatment plans from there as I didn't take much else in when the consultant told me.
Any advice would be greatly received!
Laura x
Hi laura
Im sorry to hear of your news , I'm also new to here. The waiting is the hard part not knowing or what to exspect . I was diagnosed 3 weeks ag with 1b1 cervical adenocarcinoma , this was found out with abnormal glandular cells . 10 days later I had a MRI to see the depth and if it has spread , 3 days after that I had my results , it was bigger than they originally thought but thankfully hadn't spread, which staged me at a 1b2. They was going to do a radical hysterectomy on the 12th June same day I was supposed to go on holiday , we were ready to cancel it but my consultant said a few weeks won't matter And to have the holiday and have the hysterectomy when I get back which is the 27th June . Your case will go to a multidisciplinary team which will then be decided what treatment is best for you . Firstly they said I would need all 3 radical hysterectomy, chemotherapy and radiotherapy therapy. But I was told last friday I have to go back two weeks after my op to find out results to see if I need chemo and radiotherapy. I think I've had to wait to long for results. but it can seem like it's forever , please let me know how you get on and if you need support this is the right place to be . Take care x
Hi Laura,
please try not to worry. My consultants thought I'd be 1b and the scans confirmed they were right. Many others on here say exactly the same thing.
im not sure the Macmillan pack helped me either! I read the first few pages and had to put it down! This bit, where you're waiting in this horrible limbo, is absolutely the worst bit and I didn't come on here as I thought if I look any thing up it's going to scare me. But I wish I had as I would have got lots of reassurance.
Just try try to push any scary thoughts out of your mind. It's hard but just think, it's early, the scans are just to make absolutely sure. It will be treatable and I'm sure you will get the trachelectomy. You're young and early stage so if they can do it they absolutely will.
Take each day and each appointment at a time. stop allowing your mind to wander and taunt you. You have to think positive.
good luck. Xxx
Oh and treatment wise... if they do the trach, then they'll probably take the lymph nodes too to make absolutely sure it's not gone there. If it hasn't then the trachelectomy is the treatment and you will be monitored afterwards.
Even though I've had an MRI and CT scan already, with a trach theres quite a few pre assessments to go through before the op. This is where I am... just had an MRI today with a probe up my foo! Next week, camera. All fun and games! But just to prepare you as I thought I'd just get a date for the op! I didn't realise I'd be going to several appointments first. But it's all specialist equipment for a specialist op.
xxx
Hiya Hun. Sorry to hear your news. I was diagnosed on 26th April. I was officially staged on 10th May. During those 2 weeks I had an EUA and MRI scan. I've just had my radical hysterectomy with lymph node removal and my ovaries were removed too, sometimes they leave these in. I'm on day 5 post -op and I'm feeling ok, still sore, but ok. The waiting is the hardest part, it was driving me insane, and you start thinking everything is due to cancer. Good luck with your treatment plan. Xxxx
Hi kazza
so glad you are recovering well, I was diagnosed with 1b2 adenocarcinoma the 10th may, my radical hysterectomy is booked for the 27th june , have you any tips or advice? Do you have to have further treatment, I was told I was told i need to go back 2 weeks after the op for results , is this just standard procedures? Hope you having plenty of rest and up and about soon take care x
Hi Lisa, 2weeks after op is the norm I think. With regards to advice, take nighties in and not pj's, this is because of the catheter. Take some peppermint teabags in, this really helps to ease the pain from the gas they pump you with. And the main bit is to be patient with your body. remember it has to heal and you need to rest. Xxx goodluck
Omg yes, that!
Sorry, have just found this forum after diagnosis four days ago. Had scans and biopsies and waiting for stage.
I think everything is caused by my cancer. I have slight UTI type symptoms so I'm convinced it's gone to my bladder. My belly is a bit swollen so I'm convinced it's in my liver.
This waiting is awful!
I feel quite tearful having found you all. Think I've just hijacked someone else's thread..... so sorry xx
