Hi SC84 and welcome

i was diagnosed with stage 2b cervical cancer in September last year and have been through chemo and radiotherapy. Now waiting for the results of follow ups. Happy to help with any questions/information if I can. xx

Hi, 

sorry to meet you under the circumstances. I guess I’m keen to know what to expect? How did you cope being told it was 2b and how treatable is it? What were your experiences like? I know everyone is different but the fear of the unknown isn’t helping xx

Hi SC

I was in shock when I was told I had cancer. I guess we all are. I discovered I am not good at dealing with a lot of information at one time and there was too much at that appointment-told me I would have a hysterectomy, radio, chemo, but the most important thing was they were treating to cure. I probably missed a lot of what they said, so have always taken my partner into appointments since then as an extra pair of ears. I just heard “this is not palliative. We are treating to cure”. 

I had my mri and then a ct scan and felt much better once I had a treatment plan. I was positive from the outset-they said they were treating to cure and I held onto that. However, there was no hysterectomy due to being 2b and the tumour growing into the vaginal wall.  The first two weeks of radio therapy felt easy. Then the side effects kicked in. I had diarrhoea and cystitis and felt awful. Radiotherapy became harder as you need to have a full bladder and I found it very difficult as I found bladder control got really difficult! Many times I was prepped on the table and radiotherapy started and then it would stop and the radiographer would come in and say my bladder wasn’t full enough and I would have to go out and drink more. That was tough and made appointments very long. Tell your consultant about any side effects and they will give you meds. I got meds for diarrhoea and indigestion! 

Chemo was no problem for me. The only thing I found was that I had insomnia due to the steroids and would be awake at 2am and have to get up and have a cup of tea! I had no sickness and on cisplatin there is no hair loss. I would just say take the anti sickness meds they give you, and moisturise your skin with the cream provided. 

I couldn’t have brachytherapy after my radiotherapy as I suffered a pulmonary embolism in December the day before I was due to be admitted to hospital.. This was described as “provoked” as it was caused by cancer and chemo. My blood was apparently sticky. So I had an extra 7 sessions of radiotherapy which I tolerated much better than the first time round. No side effects. 

Radiotherapy made me tired...so I would say rest when you need to...listen to your body. I feel great now. I’ve just had my check up and now awaiting mri results. I feel really good, and all my side effects have disappeared. I am nervous about my mri results, but I think that’s normal for all of us. 

My advice would be always take someone into appointments with you, write down questions in advance, and remember that no question is silly if you don’t know the answer! Ask questions, make sure everything is clear. I had to ask my nurse to explain things without medical terms and slow down when she was talking. She did. Fear of the unknown is just natural. Just keep thinking about the end result-treatable. Curative. Hold onto that. xx

Thank you so much! I guess I need to change my mindset as so far it’s been all doom and gloom for me! I’ve really struggled with the diagnosis as initially its was missed by a number of healthcare professionals during and after my pregnancy and my little boy is now 7mths old. I’ve had 12mths of being told it’s all normal but in fact it wasn’t. I was then told it’s probably 1b but MRI shows it’s spread slightly into left side parametrium and into top of vagina and also showing pelvic lymph node involvement so it got upgraded. I’m keen to start treatment as I just want it gone!! Had my ovarian transposition on Monday so it’s a start! 

Have you had any side effects post treatment? 

Xx

It must be so hard for you having had opportunities to find this missed by professionals. I had convinced myself I had something like a polyp or cyst but when I went to the doctor I knew by her her face as soon as she examined me it was more serious! I’m much older than you-my kids are adults-but you have a little one you need to keep positive for! Just as I keep positive for my girls. 

I do admit that I find my consultant a bit of a doom and gloom merchant and I find myself analysing everything he says and wishing he would be a bit more encouraging.  But though I sometimes feel a bit down after seeing him, I bounce back quickly. Another doctor told me it was hugely important for recovery for patients to be positive. I generally am! 

I feel so well that it’s odd to think I have cancer. I look perfectly well, I don’t feel ill. I have no side effects post treatment. They disappeared really quickly once I had finished. And the symptoms I had from my tumour-bleeding, discharge and pain (I was on 8 paracetamol a day) disappeared after 10 radiotherapy sessions and have never returned! I sometimes feel it’s all a bit surreal to have been through all of this and feel fine! xx

I had irregular bleeding throughout the latter half of my pregnancy and developed a discharge and heavier than normal periods afterward. Aside from that I had no pain or other symptoms so was really blindsided by this whole thing! After giving myself time to heal following c section like the gp said I went back to a different gp who took one look and said it didn’t look right and I was referred to see specialist. His demeanour changed instantly when he examined me and I knew it was bad! 

I hope you’re results are good news! When do you find out? Xx

Oh my goodness...that’s awful that no-one saw there was anything wrong. No wonder you were shocked to be diagnosed. So many medical people are looking up your bits when you’re pregnant, it’s astonishing that no-one saw anything was amiss. 

Still, it is what it is and you need to just face up to what you need to do and get through it, which you will I’m sure. I go back to my consultant at the beginning of April so a little while still to wait for my results which is always tough! xx

Yup, We’ve calculated that at least 15 people saw my cervix during and after my pregnancy. Never once was I offered a smear or colposcopy (I’ve learnt these should have been offered by consultant!) I hate that I’m having to go through this as I’m 34 and will never have anymore children and I face early menopause. I feel like I’m grieving for the life I was supposed to have but now can’t! However I get the impression from what you’re saying that if I’m going to get through this, then I’m going to have to pull up my big girl pants and put on a smile, grin and bare it for treatment and stay positive! :)

why do they make you wait so long for the results of your MRI? I suppose if it showed anything they would get you back in sooner? 

How awful for you-I can completely understand how bitter you would feel that life has turned out this way for you when you’re so young. It must be very hard to accept.

But, in essence, yes-you need to tackle this now and deal with it and while that’s going to be hard, you CAN do it. Not saying you will be positive 100% of the time as I don’t think that’s possible. I get down days when the negative thoughts creep in and there were times during treatment I thought I couldn’t go on and do it any more. But I did, because there was no choice and I desperately want this gone. 

I think the dates for my scan and follow up from it were wrong..I think they made a mistake and did the scan too early which means a longer wait for the next appointment with the consultant. There should be a check up 6 weeks post treatment for a chat an internal examination (which I had), a scan 3 months post treatment and follow ups from that. I’m guessing if there is an issue with my MRI results I will get an earlier appointment, and meanwhile it’s just the awful waiting time. 

Do you know when your treatment will start? xx

I think that’s what I’m struggling with the most, is accepting that this is now my life and I’m fighting it, like I have a choice! I’ll get there I’m sure and once treatment starts I’ll be in a different place as I’ll feel like I’m actually doing something. Things have moved so fast recently I don’t feel like I’ve had proper time to process it all either. 

Im waiting on an appointment to meet my oncology team to discuss/finalise treatment plan. Was expecting that this week but it would appear it’ll be next week now. So treatment (I hope) will probably commence the week after. 

Thats tough that they’ve mixed it all up for you! Hopefully they don’t keep you waiting with the results. I’m learning that I don’t like not knowing the results of scans immediately :D I’m impatient so found the wait agonising! What do they do at the check up? Is it just like when they first take a look or is it quite in depth?