Hi All,
I’m hoping someone out there has some words of wisdom of a happy ending tale to a story similar to mine. I’m so scared.
I had a total hysterectomy for stage 1 cervical cancer in November 2014. The cancer was removed by cone biopsy prior to the TH and when they tested everything they removed there was no further cancer found (great news) I then went for my first 6 month vault smear last June and once again all clear. So when i rocked up in late December for my next 6 month check up i didn’t even think about the results until they dropped through the door.
When they arrived mid January they had found abnormal cells which was a huge shock. I got called in again for biopsy’s which confirmed VAIN III but found no cancer (at that point). I then was refereed for Lletz treatment in February and the results finally came back and I was told yesterday that the test found cancer. Apparently its very rare and the oncologist is at a loss to explain it because of the two negative results however he feels sure it is from when I had the cervical cancer as its highly unlikely that it could happen so quickly otherwise. This terrifies me as my cancer was diagnosed in September 2014 and the thought its been sitting there all this time oh my god. I am booked in for an MRI and CT scan next Thursday to see how big it is, where it is, if its traveled i just cant think straight i keep trying to take my mind off it then find myself back on google. I even found myself googling mortality rates in vaginal cancer today which was stupid of me!!! I keep trying to reassure myself i feel fit and well with absolutely no symptoms which must be positive in terms of how advanced it is as all the websites say symptoms only show with advanced stages but maybe im just kidding myself.
Has anyone out there heard of this or experienced something similar, please help
Sarah xxx
Hi
I'm so sorry you are having to go through this all again. I'm sure someone will come on and give some better advice but I just wanted to send you big gentle hugs.
The fact you have had a clear vault smear would suggest that it wasn't there to begin with wouldn't it what stage were you was your cervical cancer?
Praying that all other tests come back ok for you and the letz is all you need. Xxx
Sorry to read your diagnosis. I have no experience of this but just wanted to send you lots of positivity following your diagnosis. There is a lady on here 365days who has had VAIN and received treatment for it. She writes a blog helloverajuice.wordpress.com. If you read this it may help. Good luck.
Helen
xxxx
Hi
i had recurrent cervical cancer to the left overary which apparently is also very rare , I was treated with an op to remove the overary and chemo and radiotherapy , I'm still here , I have a few problems at the mo but so far have survived this.
I also Google , which is really bad as it puts me in a bad place mentally as I don't read anything positive so please try not to do it. It's very scary being diagnosed with recurrent cancer but I just wanted to let you know that so far I've survived , my cancer came back after about a year ,
Im now almost 6 months post treatment , and back at work now , trying get to get on with on with life
I'm sending you lots of love and positive thoughts , the waiting for scans ect is so hard , easy to say but try to be strong , you can do this , and try to stay away from flipping Google !
big higs
greeni
Hi Sarah, My cancer was stage 1a1 and they managed to get it all in the cone biopsy so when they tested what they removed there was nothing found eithin that and my margins were clear which is why its so confusing when the oncologist says it must be from then especially as my 6 month results came back clear as well.. With that in mind it makes me feel a bit more positive that its a more recent thing and therefore the cancer they have detected is very early stages....i just cant get what he said out of his head about it being there since the CC because that means its been festering. The wait is unbareable...thsankyou for your cyber hugs and prayers, im keeping everything crossed
Sarah xxx
Thanks Helen, I will look the blog up, theres so little out there about it and its never really discussed around risks following CC, I have 6 month vault smears and colposcopy checks for the next 10 years with my oncologist as part of my follow up but it never occured to me that there was a rick of further cancer, silly really they are not going to check that often for no reason :-(
Sarah xxx
Hi Greeni,
Sorry to hear about your cancer but glad to hear all seems to be well now and hope you stay healthy going forward.. It really is so scary. When i got diagnosed with cervical cancer i was actaully very calm and kept wondering when the fall out would happen emotionally but it never did, i remaind upbeat and positive through out all the treatment etc so feeling this way has hit me like a ton of bricks, i have a constant knot in my stomach and swing back and forth between positivity and overwhelming doom. Perhaps its cause with the CC they reasured me it was very early stage from the get go where as with this they just dont know.
Sarah xxx
Hi Sarah :-)
I too was going to mention 365days. Why don't you send her a PM? I'm sure she'll be ever so pleased to hear from another woman who has had similar experiences to herself, I think that at the moment she feels like she is all alone with this.
Be lucky :-)
Tivoli
Hi Tivoli, I will do thanks...Theres not much about it on here and.. Thnaks
Stay well, sarah x
Hi Sazbee
Wanted to support you here. I'm not a doctor at all, but when I was worried sick with my issues, I read a ton of scientific reports that are available to public. From what I read it doesn't look like what you have is a cancer from that cancer - it looks more like a cancer from a virus now, so something very new and cought early. Please make sure you talk with your doctors about margins right now to understand if it's fully removed with no further rirsks, go through all scanners and hopefully all be ok. On a side note - there were/still going some researches on the impact of vitamin D on HVP virus and cervical cancer. There's some link between the two - when you don't have enough of vitamin D it might cause some negative issues with your immune system. Just sharing this idea - have no clue if it works or not buut I made my GP prescribe me vitamin D as I was insufficient of it for the last 4 years.
Wish you best of luck
I was very deficient in vit d when I was diagnosed too...been keeping an eye on my levels (doing my own bloods lol) and they have been well within normal range since...
Thanks for the advice i have googled, it makes for interesting reading. i am going to ask my doctor for a test. Helsweld how do you check your own bloods?>
Thanks Sarah xx
Lol...I am a midwife so have access to lots of bloods stuff! Xxx
When do you get results. Praying and more hugs waiting is horrible unlikely if they removed everything that is has been there as surely would have shown something in pathology.
i was 1a1 too but only told I will get 6 and 18months check ups not 10 years. Where are you based?
Xxx
Hi sarah, that's what I thought the oncologist even said he was confused as both the pathology results following my TAH and my first follow up smear came back clear. I don't know if his confusion comes from the fact than its vain 3 and already turned to cancer so the speed of it developing co not of happened in 6 months, I've tried googling it but I get nothing. Although my cancer last time was stage 1 it was grade 3 which is quite aggressive so perhaps that could explain it but then surely the oncologist would of thought of that?
I had my MRI & CT scans today but now it's the waiting game again which as you will know is just unbearable at times, my stomach is in constant knots, don't think I've been to the loo so much. Plus been on a weeks annual leave this week which has been the worst thing I could of done although it was planned before all this, I don't do well with time on my hands. The results can be up to two weeks but will hopefully be quicker, my MDT team have their meeting each Wednesday so Im keeping everything crossed they are back for this Wednesday. Hope you're well :) xx
Sorry forgot to say I'm under Tameside now, I had the TAH at the MRI Manchester but was referred back to Tameside for follow up, I thought everyone had the same aftercare plan ? Xx
oh hun you poor thing, the waiting is horrible isn't it. Really hope you get some good news soon. Can you call and explain how you are feeling and if there was any way of getting results. maybe leave message with secretary maybe.
I would have thought that all care packages would be the same too but definitely my consultant said 1 at 6 months and another 18 months. Not sure how I feel about that I have had granulated tissue so got to go back in May.
I am not sure what grade 3 means? was it the type that you had that was aggressive I know that can vary things.
Big hugs to you again and try and do some things to keep your mind off things as sitting and worrying will drive you mad. I know easier said than done.
xxxx
Sorry sarah completly missed this reply. I get my results tomorrow (i think you commented on my other thread about quick results) need to keep myself busy tomorrow or i will send myself mad. Im in a good place tonight feeling really positive which is a first this time around, maybe the bottle of wine has helped who knows but a good night sleep is on the cards too at this rate.
As you know staging is the size and spread of the cancer, where as grading is how quickly the tumour is likely to grow. With my CC cancer this was a grade 3
-
grade I – cancer cells that resemble normal cells and aren't growing rapidly
-
grade II – cancer cells that don't look like normal cells and are growing faster than normal cells
-
grade III – cancer cells that look abnormal and may grow or spread more aggressively
This makes me think that perhaps my cancer hasnt been there long but has just developed quickly if its grade 3, i will have answers tomorrow either way so no point second guessing i guess (no pun intended) thank you for your support i appriciate it, its helping keep me sane.
big hugs sarah xx
