4 episodes of heavy bleeding in last 18mths, thought menpause as 46. Eventually made rare visit to GP. Specialist referral, hysteroscopy and smear (first ever - hindsight is a wonderful thing), big bleed, biopsies taken. 20/4 told cc, stage 1b (expect radical hysterectomy and possibly radiotherapy) but need ct chest abdo with contrast and mri pelvic. Done. Told today 2b now chemo and radio, no operation though. Awaiting final mri with contrast. It’s jumped a stage in 3 weeks! Terrified. What do I need to do? How to tell my children? What can I expect from chemo rad? Don’t want to be here.
Hi scoops. I'm sorry you need to be here but you will find the forum a godsend because we are all going/been through what you are going through now.
Firstly, don't beat yourself up about your smear, I never missed one and still managed to get to stage 4 without being diagnosed! They've found it at a stage where an awful lot of women seem to be diagnosed and I'm sure some lovely ladies on here will give you their stories (or you could read through all the previous posts).
I don't think you would have jumped from stage 1b to 2b in 3 weeks. From what I understand it doesn't spread that fast x it's most likely that once youd had more accurate tests that's what showed up.
What do you need to do? Nothing really, you will be told everything over the next few weeks. Wait till you know for definite what's what with regards your staging and treatment before you tell your children (if that's what you feel is right for them) it'll be easy to answer their questions if you know the answers. Between my diagnosis and start of treatment I tried to prepare my body, ate healthy and took exercise and kept hydrated (really important once you start treatment ).
I keep saying this but I did a daily blog during my treatment in the treatment section of the forum - it's called finally started treatment and it shows my ups and downs. It wasn't the experience I expected, I thought I'd be so I'll but I manged to live as normal. I drove myself to and from hospital daily and was able to do things with the kids most of the time. You just have to listen to your body.
I also did a post called top tips for treatment where we all put things that helped up practically during treatment x
Your head will be buzzing at the moment, just keep coming here and asking anything you need to know. I'm sure someone will be able to help x
Thanks Philleepa. I read your diary in the wee small hours (sleep out of the question). So glad you wrote it - very helpful to see how you just dug in and got on with it. Wow incredible. Contrast MRI due this Weds and hopefully onco specialists Fri. Its complicated as we live in Channel Islands, so i will have to fly to Southampton and live there for 6? 7? weeks. Drrading leaving my family to cope alone.
Sorry that you have had to find us, but this is just the best place for you to be right now. I live on a tiny Greek island and was diagnosed with 2b in October 2011. For my chemo-radiation I travelled to the city where treatment took place every Sunday afternoon and back home again every Friday afternoon. That 48 hour weekend at home made a huge difference, even if only to launder the husband's bedclothes ;-) I'm not sure how travel time and costs compare with here, certainly it would have been cheaper for me to stay put in the youth hostel where I was staying, and less bloody exhausting as well. One weekend was my birthday so I got my husband to travel up to visit me instead, and my fabulous sister flew out from UK to join me in the hostel for ten days too. It's do-able, really it is. You will be blown away by the kindness of strangers, especially if you are having treatment away from home and family.
Everything Philleepa has said is spot-on (as always) You may find that the contrast used in the CT makes you feel a little odd but that lasts for less than a minute. Just letting you know so you aren't frightened when it happens.
Be lucky :-)
I was diagnosed stage 2b last October. Started with heavy bleeding last July, as I was 49 the doctor said it was menopause, but the bleeding carried on and I was sent for ultrasound scans which they thought showed a polyp so I then went for a colposcopy which showed I had cancer. I was totally devastated.
The beginning is the most difficult time but it does get easier once treatment starts (hard to believe but it’s true, as I found out). I got through my treatment ok, so much better than I expected and after an MRI scan and colposcopy I was given the all clear last week.
I have 3 children, my eldest are in their 20’s so they know everything and have been amazing even coming to hospital appointments with me. I chose not to tell my youngest son, who is now 7, that I had cancer I just told him I had a poorly tummy.
This forum is amazing and has certainly helped me through this, so keep posting any worries you have.
Love and hugs Mel xx
Thanks Tivoli & Mel. With your prompt responses (& Philleepa's), I feel I have friends in the same, or similar boat. Didn't stop me bawling my eyes out just now as I checked forum to see if anyone there and read your posts. I'm reeling from the 1b to the 2b, and so sure mri contrast result will show worse yet. Beside myself with panic - and odd pains everwhere!
You guys are so incredible and this website such a humbling experience. I truly hope one day to be strong enough to support the next batch of newbies just as you do now. At the moment i'm a pathetic shivering mess.
thank you all again from the bottom of my heart. xxx
Please don’t call yourself pathetic, YOU ARE NOT, you have received devastating heartbreaking news and this takes time to deal with, there’s so much to take in and it becomes very overwhelming, you will find strength.
I was the same at the beginning I cried at every appointment and there was times when I lay on the floor and just sobbed my heart out and my sister came to my rescue and picked me up.
I panicked too and the minute I was diagnosed I had aches and pains everywhere and convinced myself the cancer had spread but it hadn’t. I think we all felt like this at the beginning.
Sending my love Mel xx
Hey Scoops ;-)
Even if you do believe that you are a pathetic shivering mess right now, you'll soon be bouncing back laughing. If you had been here a few months ago you would have seen Mel beside herself, and now see her! Strong, positive and so supportive! 3 cheers Mel!
Be lucky :-)
Hi again you wonderful ladies
Still awaiting MRI with contrasts results, but meantime, flew to Southampton yesterday for consultation.
2b, several large squamous spread to parametrium , grade 3, poorly differentiated, no lymph involvement, is what we know for sure so far. Please can someone put that into English for me?
CT planning hopefully within the week.
Treatment will be 28 radiotherapy, 5 cisplatin chemotherapy , 3 brachytherapy.
Dr told me side effects could be severe and long term??? Worried about deafness and finger numbness as I'm a musician. But hey, big picture is I have fantastic chance of surviving!
Dreading leaving my beloved Channel Islands for 7 weeks :-(((, but again, bright side is I will be returning, this is apparently very treatable.
Told our children last week, initial terror and tears, but confusion because mum seems so well!? Now adjusted in an upbeat way - just a pity it's right on GCSE time. But there's never a good time to have cancer, is there. Started to tell friends etc now - I've never been hugged so much in a week!
Sending you all some of my surplus hugs!!
Hi...I had squamous also and the good news is that it doesn't appear to go very far at all. Other types can be,a little sneaky! Mine was 5cm and a 1b2 as it was big, but growing outwards and down. It sounds like you may have more than one??? And it has grown up through the cervix into the tissue at the top of the vagina? Sounds like your treatment plan is bang on...and you will be back to your islands in no time, to enjoy the rest of the gorgeous summer we WILL have this year :-) ps we also have gcse's this year xxx
Yes I have several - I really want to see a picture of them. Sounds strange maybe, but if Dr would show me MRI/CT scan images, I think I could "see the enemy"! Suppose I could ask?
It has spread sideways to the right, taking the parametrium into its grasp. Which would account for the pain on my right hand side.
Thanks for posting. Are you all ok now?
Hi...it will be two years in August since my op and all good :-) xxx
Hey Scoops hun,
Wondering how you are getting on. We're wk 3 down. 60% done! Bish bash bosh! Are you still feeling as sick? I still feel queasy but im keeping food down after a change in meds. Woo hoo. Been thinking of you xxx