I am newly diagnosed and start treatment Tuesday next week (very nervous). I habe loitered on this board a few times for advice and reassurance from those who have been through everything.
firstly I was wondering if anyone went from clear smears to cancer. This happened to me and I'm a 2a squamous cell and from what I've read it just doesn't happen so I'm really confused and worried.
also does anyone have any advice on getting through the treatment? I'm particularly worried about the brachy.
any advice or shared stories is gratefully received as the closer I get to starting treatment the more worried and upset I seem to get.
Mine wasn't picked up on smear, but I've got adenocarcinoma so it wouldn't be. So can't really help. Sorry, just didn't want to read and run. I think the wait for treatment is awful, though mine is different from you, I'm 11 days post radical hysterectomy and have to wait to see if any radiotherapy is needed, but hopefully it won't be. Hope someone will be better placed to answer your questions, but I very much tried to focus on the positives, and the fears were worse than the recovery xx
I can't really help either. I was 2a squamous but had been a smear dodger for years. Smears are pretty notorious for being inaccurate. I didn't have radio, 'just' a radical hysterectomy. Before the surgery i was told radio/chemo may be needed after. I was offered radio after but didn't take it.
Im sure some radio girls will be along to give you some of their words of wisdom.
Hi I'm the same as Blackberry but 6 days post radical hysterectomy. Waiting to see if need further treatment. My view is that I'm lucky and that its been picked up. Try and be positive, not easy I know. The Macmillan nurses with my consultants were really good and helpful and were there to answer questions. I tried to focus on the treatment not the cancer as that seemed to help me. Sending love and best wishes.
I am the same. Had a clear smear in January 2012 (which was impossible) and got diagnosed a year later with a 7cm tumor on cervix.
I had the same treatment as you and its tough but very VERY effective. The Brachy will be ok as long as you insist on an epidural (i was in hospital for the 3 day treatment). When the epidural kicked in i was pain free and it was fine. Ive got lots of tips depending on your symptoms when you start so feel free to message me. Good luck! you CAN do it!!
My story is like yours... I faithfully had annual smears (required when on hormonal birth control). Then suddenly - cervical cancer, stage 1b2. Couldn't believe it.
As for treatment, I had the option of surgery or chemo/radiation. I'm happy with my choice (chemo/radiation combo) as it barely affected my life, and I was able to work during the entire treatment. My treatment ended about a month ago, my first follow up appointment is tomorrow.
Cervical cancer screening is pretty good, certainly better than not screening but no, it doesn't pick up every single case. If you have time on your hands and fancy reading a long tale about my entire story, then click on my name in pink. That will take you to my profile and there you will find my whole story including every treatment under the sun called 'My Big Fat Greek Hysterectomy' You should find that once your treatment starts it's not nearly as mysterious as it seems before it begins and you'll settle into it just fine. I now realise that my brachy experience is different from many here because by the time I had that I had no cervix nor womb and so placing the rods was a doddle.
When I was diagnosed, the hospital did an audit of all my past smears. They found that even though my smear before the one that led to me being diagnosed was given the all clear, it turned out to not be clear once they looked at it again. People I tell are usually horrified but it's no good moaning- they found it in the end by a smear. Life's too short to go "if only..."
Did anyone else have their past smears audited? My Dr said was what they did for all.
I do hope all u ladies are ok. I'm 2 yrs clear now. Been months since my last visit on here. Just having a catch up on news. Looking for good news. X
I commented earlier in the post but I have an update. My hospital have now admitted that my smear in January 2012 which was reported a clear was in fact a false negative and upon review showed high grade cell changes indicative of invasion. Delayed my diagnosis by 18 months. I'm suing!
I had other symptoms which were ignored at the time.
I only found out about this smear as I had a feeling it wasn't right and contacted a lawyer who asked for my medical notes. Only then did the hospital admit that they had reviewed my smears and found the error. They didn't volunteer this information until I asked via a lawyer for my records. Call me cynical but I don't think that's right.
I was diagnosed wth 1b1 in September 2013 and had never missed or been late for a smear. I'd read on this site that you could get an audit of the previous smear results but I never followed it through. Just might ask my consultant about it on my next visit.
Like Dons I am 2 years clear now. I have a MRI booked for 10th November and see my consultant 4th December. If all ok then I will go to 6 monthly check ups - yayy!!!
Good to read your post Dons - often wondered how you were getting on!
