Hi all, I’m new today.
I went for a colposcopy yesterday after having many of the symptoms, but clear smear tests.
Within minutes of looking at me, a consultant was called in and they told me I have cancer. Before they’d even had any results. I’m having a MRI scan tomorrow. She did a painful internal examination and told me it’s definitely affecting the whole of my cervix and they need to see where else it might have spread. I had a clear smear at the end of last year and have never missed any. I’ve also got emetophobia (terrible fear of vomiting) and am absolutely terrified of going through chemo, but I’m also terrified that it might already have spread too far & I can’t bear the thought of it possibly being too late to cure.
I’ve had literally all the symptoms, some for a few years, but put them down to post menopause, & a polyp in my womb (scanned last Oct).
Only because I’ve been having a weird discharge for a few months that I’ve been going back & forth again for various swabs. This time, the nurse saw something that didn’t look right on my cervix & referred me urgently.
Even 2 days ago, I was called by the nurse to say they had reclassified me as not super urgent as my smear had been ok.
Told them I was really worried because something had to be causing it & I then rang the hospital directly myself.
Got given a cancellation for the next day & here I am now.
I’m in complete shock, had diarrhoea all night & can barely eat or drink. I’m sorry to just be posting misery, but I’m hoping that there may be someone else out there with the same phobia as me, who might give me some hope. I’ve had the phobia since I was a little girl & am now 52. Thanks for reading. Xx
Hi all, I’m new today.
Hello @Ceri - I don’t have time for a full response but didn’t want to read and run. Tr6 to hang in there - cervical cancer treatment is very good and can be curative up to quite late stages. Your story has some similarities to mine, I was stage 3B or 3C and I am still here - a year and a half after treatment. I hate throwing up also and only did once through the whole treatment - they have ver6 good antinausea meds - keep us posted and be gentle with yourself.
Thank you so much @Dar8. I’ve been reading about the side effects of chemoradation with cisplatin. I’m so scared i can’t think straight or sleep. I just keep crying. I know it’s pathetic as it hasn’t even started yet. I don’t even know what stage I am (except that they knew it was cancer immediately on first exam & before biopsy results). People keep telling me I have to be positive, but I feel like I’ll never cope. Had an mri scan yesterday & now a 10 day wait to get my stage result and treatment plan.
I’m so appreciative of your reply as I’m feeling very alone atm. X
Hi @Ceri, I know how awful the wait is before you get your staging results and treatment plan. I was diagnosed after at least a year of symptoms - my staging was 3c1, but as Dar8 said the treatments available are good, and my consultant said early on that the aim of my treatment is to cure the cancer. I had chemorad treatment - 5 weeks of cisplatin and external radio, and then 3 brachytherapy treatments. I did get nausea, but I was never actually sick - the anti sickness meds do their job!
Let yourself feel your emotions - this is a huge shock and there’s no shame in crying, or any of your reactions. You got some shit news, and you are allowed to be sad/scared/angry. There will be a time for positivity, but it doesn’t have to be right now. Big hugs, hope you get some information soon xx
Thanks so much. I hope you’re doing well now? I keep feeling very up & down. 9 days to wait before I find out. Xx
I’m doing ok, just waiting for the results of my 3 month post treatment mri - it’s been over 4 weeks now and is stressing me out (subject of a separate post lol)
As others have said, the treatment is do-able and the anti sickness tablets are very good. I had treatment for 3c 3 years ago. I am still NED.
It’s ok (and totally normal) to be shocked and scared. You will get through whatever treatment they recommend and they will listen to you.
Hang in there. Xx
Oh gosh it’s such a shock to your system isn’t it, I feel for you.
I have emetophobia just like you and my fear of beeing sick and vomiting was so big that I even tried to refuse chemo. I went for a second opinion in another hospital hoping they could treat me without going through chemotherapy
They could, but they told me I had less of a chance of beeing cured. At that moment I knew I had to choose for the chemo treatment, I felt I had to anything possible to get rid of this cancer and that I should not have my fears rule .
Easier said then done, I did mention my phobia to every single doctor, nurse and caretaker I met so that they could anticipate on it ( it’s not an uncommon phobia )
I was prescribed many different medicine to prevent and manage any nausea, and was told there were many options available if these pills ( five different ones) would not work.
I took my medicine in a very tight schedule, and was told not to wait until feeling sick, but to take them when scheduled.
I never felt sick, did not feel nauseated and did not vomit. I had six doses of chemo and it was completely doable ( aside from the mental part, it was rough)
I had 2x25 hours of brachy therapy and was given a morphine pump. I did t use it out of fear of beeing sick but it turned out I didn’t need it either. I took my paracetamol and was fine.
Just tell your team about your phobia and they will definitely work with you on this .
I am now 3 years and 8 months out, and am doing well, no evidence of disease
Wishing you all the very best and feel free to contact me in private if you want to chat
Thanks so much for replying. It gives me some hope & makes me feel like I’m not completely crazy. I’ll probably pm you if that’s ok x
Thank you for replying. . So glad you’re still NED. Xx
Please do, if there’s anything I can do to help I’d be more then happy to do so. I felt lonely during my diagnose- treatment , I don’t wish that upon anyone
Hi,first off sorry you are in this club. I had similar diagnosis,was cervix,outside cervix and small bits in lung,so mine was classed as stage 4. They have excellent treatment and excellent
nurses too care for you and a whole team of consulants who are there for you. They give you anti sickness,anti constipation,in fact anti most things if you have any problems. Unfortunatly not an anti cancer pill.
I’ve had all treatment they offered me,yes it is hard and gruelling,but i’m now 18 months out from treatment and still clear. There are hard days,but you will come through this. Take the good days and try to stay positive,i know ,easier said than done.
I will put you in my prayers
Thank you so much for replying. I’m really pleased that you’re still clear too. Long may that continue. Please do include me in your prayers. I’ll be grateful of any extra help to fight it. I’ll remember you in mine too. xx
Just to say my biggest fear was the vomiting from chemoradiation. Told my team got the anti sickness tablets and although I felt a wee bit nauseous at times wasn’t sick once it really is not as bad as your thinking. I’m 2 years clear so far. Once you start your treatment plan you are going to feel a lot stronger mentally you’ve got this x
Thank you so much. Yes, I’m so desperate to start it, but it won’t be for a while yet. Just really hoping chemorads will still be an option when I get my staging results. so pleased to know you are remaining well. Xx
Just a line to say i hope your staging results went well @Ceri and that youre feeling a bit better now you have a treatment plan!
Aww thank you so much @Georgiethallasso Sadly the pet scan showed that it’s also in nodes in my neck & rear sternum, so am stage 4B now. The plan is to keep me going as long as they can now I think. Have my first appt at the local cancer hospital tomorrow. I’m heartbroken for my boys & the rest of my family, as well as terrified for what is to come. Have joined the ladies in the advanced forum. thanks for asking though, Ceri xx
Hi @Ceri . Im so sorry to hear this, i can only begin to imagine what you must be going through. Try to keep radical hope and positivity, medical advances are incredible and treatments are changing all the time. So long as you are alive, there is hope and a chance. I dont want to push something you might not be interested in but i recently read the book ‘Radical Remission’ and it really struck a chord with me and elevated my hope levels for sure. Perhaps it might resonate with you also. Either way im wishing you all the best for this journey for you. Xxx
You’re the first person I’ve come across with the same stage as me, l had booster radiation also but they pierced my bowel and womb, l now have three spinal and pelvic fractures, unfortunately early on l developed sepsis and l was lucky that my hospital continued with my treatment but I was in ICU for all of it, I’m so happy to read your post