I was initially diagnosed as having 1a1 adenocarcinoma in July 2010 but due to the clear margins was told that 'it was gone, and not coming back' and that I should get on with the rest of my life. I asked the consultant was there a possibility of skip lesions and was told no. Everything was ok until January this year when I was called back following my smear, I have been told repeatedly about skip lesions since and that I required further treatment.
I am now almost 6 weeks post radical hysterectomy for what was initially 1b1 adenocarcinoma, unfortunately post surgery this was re staged as 2b due to 2 lymph nodes being affected and slight spread outside of cervix. My oncologist wants me to do 4 cycles of Cysplatin and 5FU, with 28 radiation in the middle. I have told her that I am not doing the 2 brachytherapy.
I am wondering if anyone can advise me what to expect, I am finding myself focusing on all the side effects both l/t and s/t possible. I have already had complications following the hysterectomy with my bladder not working and having to self catheterise, I also had ureter damage and required more surgery to fix it. I am also struggling to believe what the doctors are telling me as my confidence and trust has been shattered. I can appreciate why my consultant initially told me what he did, but it doesn't change how I feel.
Anyway I would appreciate if anyone could tell me honestly what I can expect with my upcoming treatment both l/t and s/t.
I was also diagnosed with 2b CC with two lymph nodes effected. I have received 28 external RTh, 5 chemotherapy and three brachytherapy. Sorry to hear about the complications you've had to cope with already, you've done so well.
I would say try not to focus on the possible side effects. Everyone responds differently. I haven't had any sickness from the chemo or skin problems with the radiotherapy. The only side effects I got were slight cystitis, occasional tiredness and slight bruising/ soreness in my veins from the chemo and slight nose bleeds also from the chemo. I did get the runs lol but sporadic. It sounds like quite a list, but the side effects were very managable and now two weeks after finishing treatment nearly all gone.
Personally, for me the treatment was easy to cope with. (The daily travelling was tiring though. ) Brachytherapy was fine, I saw it as a day to chill out and relax....had lots of tea and toast brought to me lol
Everyone is different, but it really might not be as bad you think it's going to be, so try not to focus and wait for them to happen, because they might not. If they do, then you're given plenty of meds to combat them. You've been so strong already....you can do it!!
Best wishes
Nicky :-)
P.S .....drink plenty of cranberry juice. Helps the bladder.
I was also diagnosed with 2b CC. I received 28 external radiotherapy, 5 sessions of cisplatin, and 2 brachytherapy. I was scheduled for 3 brachy treatments, but the oncologist took the decision to stop at 2 due to there being not visable sign of disease.
I agree with Nicky - try to not focus on the possible side effects, but just take each day as it comes. I was lucky and didnt suffer from most of the side effects - towards the end of my treatment my skin was a little sore - but only to touch and was sorted by applying more cream and allowing it to soak in. I did suffer with tiredness a little, but just slept when I needed too. However for two weeks after my treatment I was extremely tired, and the Drs investigated and my blood levels were through the floor and I had a water infection - the Drs were great and as soon as I called them with my symtons they had me in and got me on some tablets to help. The other side effect (and for me this was the worst) was the diarrhoea and the impact on my bowels from the radiotherapy. However, the Drs were great and gave me some creams / gels to help and a week after the treatment ended I started to see improvements, and within 3 weeks all was ok again !
Overall the treatment was easy to cope with - the worst part was the full day in the hospital receiving the chemo treatment. To help I went armed with laptop, kindle, lots of snacks and my hubby to keep me entertained !!
I see that you have refused the brachy treatment - for me this was the part that I was least looking forward too ! However, whilst it wasn't the most pleasant experience it wasn't as bad as I expected, the staff were wonderful, and at the hospital I was treated the setup is done under GA. Then the rest of the treatment was over quite quickly.
I wish you all the best and suggest that you just take each day as it comes and keep talking to the Drs and Nurses - any issues and they will help you and advise you
Thanks for the feedback it's hard not to focus on the side effects as I seem to keep falling into all the low percentages.
I am also finding it difficult to find anyone else who is on my treatment plan, I have been told by my oncologist that because I have had the hysterectomy she wants me to do 4 sessions of 5FU and cisplatin 3 weeks apart after I have the 1st 2 cycles I will be starting the radiotherapy, so altogether my treatment will last approximately 14 weeks. I have already been off work for 6 weeks with the hysterectomy and at the end of treatment I will need more surgery to remove the stent from my ureter. My oncologist doesn't want me working through the treatment and seems to think that the hard part is how I cope with the 5FU.
It's not the idea of pain that is putting me off the brachytherapy, I just can't deal with anyone else going near me down there. Over the last few years I have lost count of the number of doctors etc who have been there! I have had numerous other gynae issues along with the cancer. Who knows maybe I will feel stronger by the time that comes around.
I go on Tuesday for my first cycle so I guess I will know soon enough what to expect.
I cant help on the treatment plan side - mine has been very different to yours. I understand what you are saying about the brachytherapy, and I felt exactly the same in the build up to my treatment. To be honest I ignored it on my timetable and tried not to think about it. My hubby was a great support and pointed out that in for a penny in for a pound and that I had gone through so much that to not complete the treatment would be (in his words) ''mad......''. He also made me realise that it wouldnt be so bad (and it wasnt as bad as I had imagined) and that I would have to get used to Drs etc... checking me more frequently than in the past .... Its part of life now .....
I am sure you are stronger than you give yourself credit for - just take one day at a time.
Hi there. I had a rad hyst last sept and have been left with bladder problems. I self catheterised for a few months. My kidneys were blocked so I have had stents put in and was left with a nephrostomy bag on one side for a few months so had the catheter put back in. My nephrostomy has just been removed but I've kept the catheter. Its so much easier to manage. I have a flip flow valve so no bag on my leg and no more infections.
As far as the radiotherapy is concerned I got through 28 sessions OK. My bowels were a problem towards the end of treatment but my medical team were great and I got cream and laxatives when I needed them (my problem was constipation rather than diarriah). My skin was tender but if you lather on the cream from the beginning all the way round you'll be fine. The biggest thing was the tiredness which started about 1\2 way through and was just cumulative. I've never had tiredness like it, it was overwhelming but two weeks after radio finished I was virtually back to myself physically. I am waiting to see if I can have chemo and braccy is not on the table.
So many ladies on here say don't get bogged down with the treatment. We are choosing to live and the treatment is a short term thing when you choose life. We are stronger than we think. I would have a good talk with your medical team and weigh up the long term pros and one. They have your best interests at heart, even though it sounds like a couple of them have made bad calls.
Just wondered what treatment you had for the stage 1A1 cc? i was diagnosed in 2008 with stage 1A1, i had LLETTZ done, was told margins were clear and that i required no further treatment, only yearly smears, still contunued to have problems with bleeding etc, until eventually last year was referred back to gynae, they decided to do hysterectomy, 2 weeks later was called back to say the found stage 1B1 cc, every smear i have had since 2008 and colposcopy i had in may 2013 all apparently came back as normal, they had no idea i had cancer when they did my hysterectomy, the oncology doctor thinks they didn't clear it all in 2008 and that it's been slow growing for 5yr, i'm n ow in process of seeking legal advice as i believe i have been mis diagnosed
