Hi
I just found out last Tuesday that I have cervical cancer and I’m still reeling from the news.
I have had all my routine smears and all but this last one came back as normal. I went for smear in January and got letter referring me to colposcopy on Feb 11th. Had 3 biopsies done on 17th February and after what seemed like an eternity waiting they came back precancerous but needing treatment. Had a leitz procedure on 7th April and was told see you in 6 months.
Then I got a letter with appt to see consultant again. Which I did last week - even then it hasn’t occurred to me what it was about. He told me he’d sent some samples away after leitz and they’d come back cancerous. He said he believed it’s stage 1a1 but need a cold cone biopsy to check this and then a hysterectomy.
I’m still in shock - I did everything right and still have had this diagnosis. Just got letter that cold cone biopsy is scheduled on May 19th- to me that feels like an eternity away I’m scared in case the cancer spreads in the meantime.
How long did you generally wait for biopsy? And any advice on how to get my head round this all and keep things as normal as possible for my 3 kids?
Thanks
Tanya
Hi Tanya
So sorry that you've had this diagnosis, it's so hard to digest at first. Stage 1a1 is the earliest stage, so they've caught it at the right time and treatment should be straight forward. Jo's site has loads of info about treatments, so make sure you read and research this, as even though they've mentioned cone and hysterectomy, you're still entitled to have a conversation with them about alternatives. I have heard of some 1a1 cancers being treated by cone biopsy alone and no further treatment, however I think because you have had children, they will not be aiming to preserve your feritilty so may want to do the hysterectomy just to be absolutely 100% sure they get everything they need to. When I first met my consultant they had already booked me in for a hysterectomy but I was able to choose another treatment that I thought was better for me after much discussion.
19th May does seem like a long time to go, but unfortunately these things do take time - I was diagnosed in the August and didn't have my surgery til the October. The waiting is really difficult, and it's normal to worry that in the meantime the cancer is getting worse, but please be reassured that cervical cancer is very slow growing and not aggressive, so it's very unlikely that it will get worse between now and your cone biopsy.
Did they give you a CNS (Clinical Nurse Specialist) to contact? If not, try to call the consultant back to get the contact details of one, as they are super helpful and can help put your mind at rest - they're always free for a phone call or an email if you're worried about anything.
xx
Hi Tanita:
So sorry that you have to deal with all this. You're in the right place. Tons of women on here will jump in with support and answer questions.
You did do everthing right keeping up with your smears which is why this has been caught so early. Well done you.
I was recently diagnosed with stage 1A1 CC too. I had a cone biopsy (I live in the States so things may be done differently here) which showed the tumour and precancerous cells. My gyno oncologist said that the biopsy had taken out the tumour but that there were precancerous cells in situ. She has booked me in for a regular hysterectomy (not a radical one) and she'll remove the ovaries too. (I've already had my children and I'm post menopausal.) I don't know what she'd suggest if I had been pre kids or younger. I'm waiting for an MRI and Pet scan before surgery in late May.
Hang in there. Waiting is the absolute worse as everyone on here will tell you and it's only natural to want to get everything done as quickly as possible. Maybe you could give your doctor a call so that she can reassure you.
Good luck.
Hi Tanya :-)
So sorry for your diagnosis but glad you have found us so quickly. This is now the very best place for you on the whole internet and please stay away from Google! It is NOT a doctor :-) Apples and Teresa before me have given you spot-on advice :-)
OK, so you did all the right things. That's great! That's why you have been caught so early. Screening for cervical cancer cannot possibly actually prevent you from developing it, but it can certainly help to catch you in the early stages before it has become more dangerous.
Two really important things to remember at this moment;
a - this is a very slow-growing cancer
b- it's a very curable cancer
May 19th is only a bit over a fortnight away, barely enough time to find yourself a really chi-chi knock-em-dead pair of pyjamas for hospital :-) Hang around here and have fun :-) It's what we're here for :-)
Be lucky :-)
Tivoli
Thanks Apples
your advice really helped. My hubby has had the snip so I'm happy enough to have a hysterectomy as Ive the 3 babes. Im going to ring my consultants secretary tomorrow and ask about a nurse. Last week we were just bombarded with information at the appointment I didn't even get to ask many questions as I was still in shock. Thanks for sharing your story and im glad things are going well with you at the moment. Xxxx
Thanks Teresa
I've had my family but am 36 so consultant said I was young for a radical hysterectomy though I think that's the plan if the cone biopsy comes back showing changes. I'm not a very patient person so the waiting is the hardest but I'm using the time to try and get my immune system built up and myself prepared physically and mentally for the journey ahead. xxxxx
Thanks Tivoli
I was in primark today and looked at pyjamas but then wondered "will I need them for the operation?" So many silly little questions going through my head as well as the big ones. Thanks for your kind words of support. i think in my head I was getting stuck on the "in 6 weeks from biopsy to leitz procedure it changed from stage 3 precancerous cells to cancer" and was thinking what if it spreads now while I'm waiting. Gonna try a focus on the positives that my consultant seen something and sent it away so he's thorough and that 2 weeks isn't that long. Will also have to go buy myself a few pairs of pyjamas - one for hospital one for back home . Thanks again for taking the time to answer me and reassure me xxxxx
Hi Tanya :-)
Thanks so much for your quick response - to each of us!
I don't imagine for a moment that your cells have changed from CIN3 to cancer in six weeks, it's simply that there are spots of this and spots of that and it all depends upon the piece that was taken for testing.
If it's likely to be a hysterectomy then it's nighties you will want, not PJs, though PJs are fine for a biopsy. If you are told it'll definitely be a hysterectomy, come straight back here for the full shopping list, this is one aspect you will get heaps of advice about :-)
Be lucky :-)
(((((HUGS)))))
Tivoli :-)
I'm glad we've all been able to help! Keep us up to date when you find out more info, it's a great way to get advice and tips from people who've been through the same thing.
xx
