I am new to this forum but have been following since first diagnosed with cc 7th August 2014. I am older lady (aged 60 but look and act much younger!). I initially had abnormal smear following all normal smears previously. Had colposcopy followed by lletz cone biopsy. I was initially told Stage 0 following small biopsy but then 2a following cone biopsy and MRI. However, MDT revised to 1b1 and this was confirmed following an EUA. It was decided for me to have radical hysterectomy (and by the way this went really well - in hospital for four days and no real side effects - had catheter in situ, but really no problem (just burst once so was very embarrassing). Came home and had some constipation for a few days, but only minimal pain. I am off work but up and walking and doing everything as normal, except heavy lifting, hoovering etc.
Anyway, I digress. The biopsy taken following the surgery showed clear margins and lymph nodes clear so that was great. However, also showed four and half centimetre tumour, deep stomal invasion and lymphatic vascular disease and now confirmed as 2a2. Was told that radical hysterectomy should not have been done.
Doctors now wanting to give me chemoradiation, but say there could be awful side effects, even late effects. Have been given all booklets to read and have been researching data;statistics on internet like mad. Have to make this decision by end of next week - so many people have different opinions.
I must say that it really helps to be positive and only way to beat the little b.......!
Hi. I had a radical in aug for 1B2 squamous cell. Pathology showed a 4.5 cm tumour with great margins but a scrap of LVSI and deep stromal involvement so I needed rads. I have done 20 with 8 to go! I had one chemo but had a nasty reaction to it! Rads are not pleasant but ok. I am interested to know why they upgraded it to a stage 2.
I'm sorry it really pees me off that they can get this so wrong, to say a radical hysterectomy should not have been done is disgraceful, this should not be happening, i was diagnosed in 2008 with stage 1A1 had LLETZ was told they'd got it all that margins were clear & that no furhter treatment was required, had annual smears after that all of which were reported as normal, continued having problems that got worse, was referred back to gynae early last year, had colposcopy which was told was normal, i was told it was my age my hormones, was offered an ablation to lining of womb to which i said no that i'd rather have a hysterectomy, that god they did the hysterectomy in Nov last year as they found out after the surgery that i had 1B1 cervical cancer, doctor couldn't apologise enough, think he knew that someone had made a mistake, had to have another operation 7 weeks later, mistakes like this should not happen
What a decision to make!! I didn't have the option of a radical hysterectomy, due to the position of my tumour. So it was radio/chemo with brachytherapy. This is a very effective treatment. It does challenge your body but it is very doable. Think of the positives of treatment, as the negatives do not affect everyone. With very best wishes Jayne x
Hi thanks Helsweld for sharing your experience with chemoradiation. What happened was when initially diagnosed as 2a, consultant looked at MRI scan and also did EUA and thought was 1b1. If tumour is 4 and half centimetres they should not do radical hysterectomy. However, I am glad they "cleared everything" - they re-staged at 2a2 as cancer had slightly spread through cervix to upper third of vagina - and as mentioned before, large tumour, deep stromal invasion and lvsi.
You are right Mandy 1969, I am not blaming the MDT. but I should have had chemoradiation in the first place and now if I have this on top of the radical hysterectomy, I am at high risk of side effects and late effects. As a 2a2 I am considered "intermediate risk" for return of cancer and now have this awful decision to make whether to have treatment or leave it. Sorry to hear of your own dilemma, but glad situation resolved in the end. No professional will put their neck on the line to give a recommendation.
My situation was a little different...I was 19 weeks pregnant also and needed to have a termination in order to get treatment so a hyst was essential...my cervix wouldn't have stood a normal birth and a section was out of the question as they didn't want to spread the cancer! We have a still birth to cope with on top of all of this Bah! I was told it is best to hit it hard and hit it once rather than waiting around in case it comes back. Good luck xxx
I was a stage 2b, had radical hysterectomy 3 years ago, followed by 25 radio, 5 Cisplatin and 2 brachy. All still well with me.
If you want the full unabridged account it's called "My Big Fat Greek Hysterectomy" about 2 pages back in 'Newly Diagnosed'
Why are they telling you that you shouldn't have had the surgery? Why are they telling you about awful side effects and late effects? I don't understand, what am I missing here?
Hi there (Silver by the way is my lovely blue merle collie called Silver who gives me loads of hugs and support!!).
Thanks for all your support ladies and it does sound like the treatment is "doable" and I think I am going to go down the route of one cycle chemo/radio/brachy 28 days altogether. Better to risk side effects I think than have it come back and even spread.
I think it may be because of my age and history if IBS that they say I should be wary of side effects. They also pointed out to me that radiation can cause some cancers, especially in the bowel area, can cause double incontinence, pelvic fractures and lymphoedema so scared me half to death. They went to great lengths to talk to me about long-term chronic side effects and late effects - that is why I am confused and worried. The surgeon who carried out the radical hysterectomy said he personally would not have further treatment, but that his opposite number (another surgeon) said he would.
They pointed out that if they had known this was a 2a stage cc, I would have had the chemoradiation and the rad.hyst would not havebeen done.
Thanks Janey and Tivoli for telling me about your experiences - treatment does not sound too bad after all.
Helsweld, am so sorry to hear you have had to undergo a termination in order to beat the cancer. What a terrible experience for you. I do feel for you.
I had a RH jan 14 and decided to not have chemoradiation.
I was told I had a 10% chance it would come back and that radio would reduce that chance to 7 or 8 % I felt that the risks outweighed the benefits. I now have VAIn and have undergone surgery earlier this week to see if I have a recurrence of CC and if the VAin is just Vain or is indeed vaginal cancer.
If I had had Radio earlier and this had happened I would left with nowhere to go rather than chemo or a pelvic externeration. As I haven't had radio yet that is still an option for me. (Radio can only be done on the same place once)
I don't have a crystal ball and it is impossible to say if I had the radio earlier this would not of come back anyway.
It was a tough decision to make then but I still believe it was the right one.
Push your doc for percentages. If I was told there was a 50% chance of it coming back and radio would have reduced that to 25% I would probably have chosen to have it.
Ultimately it's your decsion and whatever you decide will be right for you. xxx
I think your comments, Rebecca01 and 365days show how one option is suitable for one person than another and neither is right or wrong. Just makes choosing a bit more complicated. I am now feeling that for my circumstances that treatment would be the best option. I do agree, 365days, that it is certainly worth asking the question about the percentage ratio of likely recurrence with radio compared to without. I have already asked some questions to clinical oncologist but now have some more to ask her tomorrow before finally making this decision by end of week.
This forum has been really useful and thanks for taking the time to respond to my query. Good luck to you all!
I had chemo radiation in2012. Just over a year later I developed severe radiation proctitis, so severe I need frequent transfusions. The only treatment that can help is hyperbaric oxygen therapy which the NHS will not fund. They would rather pay for transfusions for the rest of my life. Very few people are aware of such severe side effects and help is few and far between. My quality of life is affected and I go from hospital to hospital for checks, blood counts and transfusions. Just be aware!
Yeah, I had a spot of bowel urgency too (what a delicate way to put it :-) ) It also triggered my shingles, but nothing else. I accept that I was lucky and it could have been worse.
Hi there, I had a rh and decided against further treatment because the margins were clear. The cancer came back. I have now had radiotherapy and chemo. I think if you are relatively fit and well you will tolerate the treatment well. You are told about all the side effects so you are forewarned but they do not effect everyone. We are all different so you will respond to the treatment in your own way. Just make sure that you talk it all through with a consultant you are happy with. Good luck x
Just up-dating. After much soul-searching, internet research and speaking to family/friends, made decision to go with chemoradiation treatment, which will start on 8th December for 28 days (25 radio/3 brachy/5 chemo). Think I will tick off each day. Am a little worried about side effects, but keeping positive and hoping to keep as active as possible throughout. Thanks everyone for your help and advice on this forum - I really have taken the comments on board. Janis
Hi Silverado, I had RH last November. Found out the tumour was aggressive and I also had LVSI present. I subsequently had 25 sessions of RT as I was deemed high risk of recurrence. I am suffering with bowel problems from it but I feel that I have given myself a chance of it not coming back. Hope everything goes ok with your treatment love. Lea xxx
