Hello all,
new to the site, not sure exactly what to say here? Needed to talk to other ladies who have gone through and who are still going through this.
My initial panic over being diagnosed, has subsided and I only cry every now & then. I am still waiting on surgery as I am to have a radical hysterectomy and have been given an unconfirmed date of 12/12/12. The waiting is hard, especially as I was misinformed when given the result of my colposcopy which showed the cancer, that I would probably need a hysterectomy & would be operated on really quickly. I thought 'really quickly' meant within a week but here I am 5 weeks later & still waiting. Does this seem like a really long time?
Hi
Welcome to the site :o)
I was similar and had 6 weeks between diagnosis and hysterectomy. It felt like eternity so I can really sympathise. How are you meant to carry on with normal life, work etc when your whole life is in limbo? I found it very difficult and thought I had been treated slowly compared to other areas but I think it varies. I needed two surgeons to be available on the same day and was diagnosed just before they both went on holiday, on different dates :o(
There are NHS guidelines which stipulate that you should start to receive treatment for cancer within 4 weeks of diagnosis. After 3 weeks of waiting I complained to my gynae-oncology nurse that I wasn't going to be seen within the month timescale. She told me that they actually have 8 week before there is a black mark against them in terms of NHS performance. However, the very next day they called my surgeon on holiday and gave me a confirmed date. Okay, a bit later than I'd hoped but I believe that my complaining and quoting timescales did hurry them up and at the very least it did make me feel more in control.
It might be worth discussing your concerns with your gynae-oncology nurse. I wish you all the best with your surgery. The waiting is difficult but you will get through it. I remember the surgery date finally coming around and thinking now?, but I'm not ready I need more time!!!! I dealt with the lack of control by controlling what I could in preparation e.g. making meals for the freezer to eat post surgery, packing my bags early, getting my hair cut, stocking up on cards/presents for birthdays after my op etc etc anything that could keep me busy and occupied.
I felt better and much calmer after the surgery. The surgery will happen sooner than you think and can then start on the road to recovery. Despite all my anxiety and worrying about how long the surgery was taking to get organised they discovered in surgery the Lletz had already removed all of the cancer so it was all gone anyway! My surgeon reassured me that cervical cancer is very slow growing and a couple of weeks wouldn't make any difference to the long-term prognosis but I can understand the wait is still difficult.
Good luck, take care and best wishes
Kirsty xx
Hi
Welcome to the site :o)
I was similar and had 6 weeks between diagnosis and hysterectomy. It felt like eternity so I can really sympathise. How are you meant to carry on with normal life, work etc when your whole life is in limbo? I found it very difficult and thought I had been treated slowly compared to other areas but I think it varies. I needed two surgeons to be available on the same day and was diagnosed just before they both went on holiday, on different dates :o(
There are NHS guidelines which stipulate that you should start to receive treatment for cancer within 4 weeks of diagnosis. After 3 weeks of waiting I complained to my gynae-oncology nurse that I wasn't going to be seen within the month timescale. She told me that they actually have 8 week before there is a black mark against them in terms of NHS performance. However, the very next day they called my surgeon on holiday and gave me a confirmed date. Okay, a bit later than I'd hoped but I believe that my complaining and quoting timescales did hurry them up and at the very least it did make me feel more in control.
It might be worth discussing your concerns with your gynae-oncology nurse. I wish you all the best with your surgery. The waiting is difficult but you will get through it. I remember the surgery date finally coming around and thinking now?, but I'm not ready I need more time!!!! I dealt with the lack of control by controlling what I could in preparation e.g. making meals for the freezer to eat post surgery, packing my bags early, getting my hair cut, stocking up on cards/presents for birthdays after my op etc etc anything that could keep me busy and occupied.
I felt better and much calmer after the surgery. The surgery will happen sooner than you think and can then start on the road to recovery. Despite all my anxiety and worrying about how long the surgery was taking to get organised they discovered in surgery the Lletz had already removed all of the cancer so it was all gone anyway! My surgeon reassured me that cervical cancer is very slow growing and a couple of weeks wouldn't make any difference to the long-term prognosis but I can understand the wait is still difficult.
Good luck, take care and best wishes
Kirsty xx
Hi there, so sorry you have had to find this site, there are a lot of very lovely ladies who will be able to give lots of good advise here. I was diagnosed with cc stage 1b earlier this year, i to had a RH in June. I waited about the same time as you and yes it seems a very long time, but just try to remember that cc is very very slow growing so the time you have to wait wont make any difference to the cc, i know it's the waiting around that does your head in, try and stay possitive and before you know it this will be all behind you. Take care and try and treat yourself to something nice.
Juliex
khall92 & julie x Thank you for your replies, it is good to 'talk' with others who know exactly what you're going through. I've been off work for 5 weeks already now since the Doctor who performed the Colposcopy told me that I had cc. I've workded for the same company solidly for 30 years only taking time off to have my 'children' who are now 22 & 18, and have found it hard putting in the time whilst waiting. Maybe a stronger person could've stayed on at work & only took time off when the operation date came, not me, my head exploded there & then. Strangely I can't wait to have the operation, (radical hysterectomy) I feel I just need to have it removed then I can move on to the next step.
Again, thanks for giving me your support, xx
Hello!!!
you will find lots of support here, I was diagnosed in sept after 1 st ever abnormal smear as you will see from my signature trail. the waiting after was horrendous but this site was a world of knowledge and my husband and young children were a massive distraction For me!!! To be fair my op was 4 weeks after I was told, however this was a free slot my surgeon had by chance I think as he said ...." As you have a young family and a little one starting school, do you want to put it off a few weeks???" To which I replied no thanks chop it out!!!
My point is that he was not concerned overly about doing it ASAP within reason..... I said the quicker the better, but he said a few weeks won't make a diff anyway If I need to make arrangements. So don't be worried about the time scales, hopefully your specialist nurse can chase for you (think mine grew tired of me LOL!) that's what they are there for though.
Hope all goes well, sending hugs and keep us posted x
if you are being offered the op I'm guessing you are stage one as was I, its almost 100% curable with surgery so chin up, But i know its hard X x
Bex. X
Hello and thank you for your message, much appreciated.
Yes, I'm stage 1B1 - and I haven't even considered my odds in the long term, I can't see past the operation date, I can't wait for it to come. I feel it has been a really long wait, almost 18 months since this all kicked off, so I was more than concerned with having to wait 7-8 weeks since diagnosis for the operation, the date of which is actually still unconfirmed, anything could happen that would delay it. I'm still really anxious, having always been a worrier. Still, I'm hoping to be able to gain some new friends through this site as I go through this journey. Again, thank you for your message.
__
June 2011 - smear 'cell changes'
Dec 2011 - repeat smear ' still 'cell changes' recommend 6 months hormone treatment
June 2012 following hormone treatment - abnormal cells
October 1st 2012 - colposcopy
October 22nd - seen by Colposcopy Doctor - cc found
October 25th - MRI
Nov 5th - EUA staging confirmed 1B1 - told by surgeon Rad. Hyst. & Lymph Node dissection required
12/12/12 - Unconfirmed date of Hyst - still waiting.
Hi,hopefully your operation will be done in a couple of days.I was lucky enough to only wait 3 weeks for my op from the date of the diagnosis but that seemed like an eternity.Playing the waiting game is a hard thing to do, i know.I kept busy stocking the cupboards and freezer up, cleaning the house from top to bottom, having my hair cut, packing a bag, notifying friends of what was going to happen, etc.It will be three years in January since i under went an extended hysterectomy. They removed 13 lymph nodes to send to the lab to be tested and it took 6 weeks for the results to come through.Thankfully the cancer had not spread and no further treatment was required.I have visited my specialist every 6 months since then for smear tests and even now i get so stressed out waiting for the results which to date thankfully have been clear.If all remains clear at my next check up in Jan i go on to 12 monthly check ups.The best advise i can give you is think positive !! I must admit after the op i did stop poeple coming round to see me.I did not want any negative vibes. For the first time i put myself first and concentrated on the recovery from the op. I was very lucky as i had no complications during or after the operation.Do as the Doctors tell you which is nothing.Don't be tempted to raise a finger to do anything.My scar goes from under my belly button to you know where and rather than being embarrased about it i am very proud of it as it saved my life.Good luck with everything and ...........take good care of you !!!
