I am 54 and have already had radical surgery for bowel cancer in the past, which never even raised a tear. Yet here I am terrified!
I was given the all clear from colon cancer last year after 5 years. It was an expected cancer after having Ulcerative colitis for over 20 years. I had my whole colon removed and a j-pouch formed . They took loads of lymph nodes but I was told there was absolutely no chance it had spread and I didn't need chemo at that time.
When I had my smear ( which by the way was my first in 8 years- I am so angry with myself . I have no excuses - I went for all my other cancer follow up Sam scans, MRI, blood tests etc and have already had 2 mammograms. I was speechless when my GP casually reminded me about my smear when I went I to discuss she thing else!) The nurse carrying out the test warned me I would probably have a recall because of my j pouch but couldn't explain why- she had just learned of this during her training.
Only a week after my smear I had a letter regarding an urgent colposcopy- which I am having tomorrow ( and dreading because my cervix is very posterior :( ) then on Saturday ( why do these things always arrive on a Saturday when you can't phone your doctor ?) I received an appointment for the gynae oncology clinic. The letter states I may start treatment that day. Is this normal ? Can they really tell I have a cancer requiring chemo just from my initial smear?!
My GP never received the results of my smear and the locum who took the call from the lab made no notes. He said he would check up and phone me but didn't -either he didn't do it or he didn't want to face a difficult purine call with me.
For the past few days I have been on the verge of planning my funeral. I have a 13 year old on the autism spectrum, two older children who still rely on me a lot and am a single parent with no family to support me.
Not only am I worrying about dying, but I am worried about my j-pouch being wrecked by chemo and radiotherapy.
I feel so alone and have no one to talk to about this. Just typing this out has helped however .
Hi. Goodness I can understand why you are so scared. What I would say is that from the smear they can tell whether there are abnormal cells or not. The colposcopy then allows them to see how extensive it is and take biopsies to see whether there are any cancer cells present or not. Then treatment is put in place, usually lletz etc. Tomorrow you will know more as you are having the colposcopy exam. As for the gynecology appointment, I’m not sure. Could it be due to the pouch? Good luck. I’m sure things will make more sense at the colposcopy exam.
Thanks for your reply, oldhand . It was pretty terrifying seeing the oncology appointment when I haven't even been told what the smear showed! I don't know of it's the same everywhere, but where I live there is this 2 week colposcopy clinic for urgent appointments . I keep hoping that maybe the follow up appointment is just routine from that, but of course I am just wanting to try to make things seem less frightening ! It doesn't help to be going to both appointments alone!
I just wanted to wish you good luck for your appointment tomorrow bless you . I know how worrying the colposcopy / LLETZ is having not long been through it myself . You sound like you already have a lot to cope with . I hope you get sorted . Stay strong .
I just thought I would update as I am already home.
I must give a big thanks and thumbs up to the staff at [Name of Hospital removed]. This hospital gets dreadful press and reviews and I must admit I was concerned to be referred there, but all I have seen so far has done nothing but reassure me and they couldn't have been nicer.
Firstly the lovely consultant was able to tell me why I have had such difficulty with smears in the past: I have always been told my cervix is very posterior but he gave up looking posterior, did an internal and informed me my cervix is actually anterior. The colposcopy was pretty painless I have to say.
He immediately pointed out that I have a tumour and said there is nothing else it could be except cancer. He therefore couldn't do any treatment today. He immediately got the oncology specialist nurse involved and I have an. MRI Thursday to check for spread. I am then being booked in for a cone biopsy under a general ( he advised this because of my other health issues- he said they will want to do a very thorough pelvic exam and with my j-pouch it would be very uncomfortable plus he feels they will get a better margin out with me asleep.)
He said I may need a hysterectomy but he doesn't want to full my head with too much yet, he did say repeatedly that he feels this is 'eminently treatable' and there isn't any obvious spread, but he couldn't promise that of course.
I am scared but I have a team around me already and I don't have any choice but to do what they tell me to,and pray and hope for the best! This my second bite of the cancer apple so I am pretty acquainted with the whole roller coaster experience of it all.
Thanks to those who answered me yesterday- just having people out there who know exactly what you are going through is so reassuring and comforting, even though you wouldn't wish all of this on your worst enemy !!
I just thought I would update a little. I had another colposcopy last Tuesday and biopsy- I was supposed to be having it done under GA this Tuesday, however when I went for my MRI results ( thankfully clear!) the consultant was very keen to get it done straight away and get a diagnosis so she can crack on and refer me to the London Hospital for a hysterectomy. The procedure was not at all as bad as I had expected but I did find the shaking legs/arms from the adrenalin a bit of a shock as they didn't warn me about it! I was a bit silly and went to a Bryan Ferry concert a couple of hours after the procedure ( drove myself there and back like an idiot) and I didn't feel great, but I think I would have been fine had I gone home and rested for the evening . As it was I felt lousy the next day- my own fault ( but the concert was great lol!)
The consultant is very sure that this is a localised cancer like my colon cancer was and that it can be successfully treated by a hysterectomy: she says that the type will have to be discussed at a multi-team meeting and she is also debating whether they need to contact the hospital where I had my pouch created, as apparently the cervix is sitting right next to the pouch and it's going to be tricky to remove it whilst preserving the pouch. I am therefore likely to have an abdominal op rather than keyhole etc.
She has given me a timeframe of about three to four weeks for my hysterectomy. It's a little scary but the previous op I had was a nine hour operation and I was in intensive care afterwards so I keep telling myself I've done it before and I can do it again!
I am going back to hospital this Wednesday to see her colleague for the biopsy result and to discuss what happens next. This is such a roller coaster, but the good thing this time is that I am not having to chase appointments etc, so far everything I have been promised has happened like clockwork.
I just thought I would wind up my posts here .
i wasn't able to finish my radiotherapy and chemotherapy becuase I had extremely severe side effects to them. I only actually received 2 chemos and had 17 radiotherapy treatments before my oncologist advised me that it wasn't in my best interests to continue.i had to have three blood transfusions within the first two weeks because my blood count kept dropping, and I was having extreme diarrhoea and abdominal pain to the point I ended up in A/E twice, I also had ( still have ) excruciating pain in one hip that has kept me house bound for weeks. I am waiting to see whether any of these problems resolve as the effect of treatment wear off, but with regards to my gut problems I may be looking at an ileostomy if things haven't started to resolve by three months.
Very depressing end to my treatment story. I should have celebrated finishing treatment last week, instead it have been told it was all for nothing. I have to rely on the follow uo now and hope not will pick up any recurrence- although there was a bit of a pregnant silence when I asked what treatment they could offer me if the cancer does return.