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Diagnosed with 1b1 - new

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Nat83
Diagnosed with 1b1 - new

Hello ladies,

I have been silently following the forums onhere and also on mumsnet for the last 6months of my journey. Unfortunately it cumulated to being diagnosed with 1b1 yesterday. I am a bit shell shocked to say the least, as I had an Mri scan first which came back clear, as at the same time a biopsy sample which also came back with "only"cin3 and Cgin. I thought I had got away with it. I felt so lucky. Within a week I had the lletz procedure carried out, and was told I would have another smear in 6months. I knew the removed areas would be sent into the lab, but didn't give it much thought, as I thought the worst that would happen would be they wouldn't have the clear margins, and there might be a micro tumour, And they would just suggest another lletz. Instead they called me in yesterday and sat me down and told me they found cancer. After a few seconds if stunned silence I asked them what this meant, and asked about the margins, but they kept shaking their head, and I didn't understand. They said if I already had children, they would just do a hysterectomy, but because I don't have any children yet, and would like a family they suggested I may be able to have a trachelechtomy, where they remove the cervix only. I would still need to have lymph nodes removed also. 

Every time I had one result and thought it was fine I would have another worse diagnosis than I thought, and I'm so scared that there is more than they know, and I'll end up needing more invasive treatment. I'm not sure why they havent just offered a cone biopsy first. The cancer they found was just 7mm wide, but was an adenocarcinnoma, which is the cells on the innerlining of the cervix. So this might be the reason? The trachelechtomy is just an option at the moment, and as I said I'mpreparing for the worst, as it might have spread to my womb already, although just on a mircscopic level, as the MRI was clear. 

 

Out of interest has anyone Had a coil fitted in the past, as I am wondering if this pushed the hpv higher up into my cervix? The dr said it wouldn't have. Also I have an ectopy, which is where the inner cells protrude from the cervix thereby making them More prone to being attacked by hpv?

 

On a positive note my ex has agreed to donate his sperm to freeze some embryos for me later, and another friend out of the blue offered to be a surrogate for me. I am so happy I have the support form my family and friends but at the same time I hope it doesn't come to this! It is hard to stay positive for my friends. I could hear the shock in my exes voice. Also all my family live abroad, and So do many of my friends. So I am quite lonely in my flat although I have one or two close friends where I stay. Finding a support group would be really helpfull. Does anyone know of any in Scotland?

Thank you all for listening, and I hope to find some support on here

Nat x

 

Smear test 2nd jan 15 - hpv16 positive, smear normal

Smear test 5th feb - minor changes

Went to gum clinic to ask for colposcopy 12th feb due to vaginal bleeding after sex.

Colposcopy 18th march - results took six weeks, unsatisfactory sample

Colposcopy 11th may - cgnic and cin3, possibly cancer cells too, but they weren't sure

Colposcopy 26th may - cgnic and cin 3 only

Blood samples for kidney and liver 27th may -normal

Mri scan 12th June- all clear

Letz treatment - 19th June. Two 1cm bits removed.

Results 8th July - cgnic, cin3, and cancer 1b1 <7mm

Waiting to see gynae-oncologist

 

 

 

 

Smear test 2nd jan 15 - hpv16 but pap normal

Smear test 5th feb - minor changes

Went to gum clinic to ask for colposcopy 12th feb due to vaginal bleeding after sex.

Colposcopy 18th march - results took six weeks, unsatisfactory sample

Colposcopy 11th may - cgnic and cin3, possibly cancer cells too, but they weren't sure

Colposcopy 26th may - cgnic and cin 3 only

Blood samples for kidney and liver 27th may -normal

Mri scan 12th June- all clear

Letz treatment - 19th June. 3x4cm removed

Results 8th July - cgnic, cin3, and cancer 1b1 - 12x3mm

trachelectomy and lymph node removal scheduled 21st August

 

Moonfish

Hi Nat,

i am so sorry to hear your news, it is tough going and we are here for you. I am at a similar stage to you, having had a clear MRI yet a LLETZ which found the top of the adenocarcinoma but not sure about the edges - I am fuzzy on this detail too but but a radical hysterectomy is suggested as I am older than you. I was hoping for a cone biopsy but it does not seem to be enough in my case. I have an ectopy too, I remember now you mention it. I don't know much about coils. 

It is a worry about the unpredictability of it all, especially during this diagnosis stage. It is also a reason why the gynae cancer teams are so marvellous, working so hard to go step by step and to help us as much as possible. I do hope that your surgery can be minimal and successful. If you have nurse specialists at your hospital they seem fantastic.

How lovely of your ex! And your friend! I hope you can surf on those love waves in spite of everything- and your friends will not mind if you aren't always positive, I blubbed quite horribly on some today as I was very wobbly.

M xx

June 2015 Severe changes, biopsy, adenocarcinoma, MRI, LLETZ... Rad Hysterectomy booked for 4th August rearranged for 11 August.

All clear 18th August 2015. Started Mistletoe therapy (Iscador) in September, Stopped after a bit.

Nat83

Hi moon fish,

 

Thank you for your very supportive response!! Despite all the blubbering you areclearly very passionate about helping other people. That's very nice of you :)

I have to keep it short as need to try and get some sleep, but can I ask what grade/stage cc they have diagnosed you with?

 

Thanks, nat

Smear test 2nd jan 15 - hpv16 but pap normal

Smear test 5th feb - minor changes

Went to gum clinic to ask for colposcopy 12th feb due to vaginal bleeding after sex.

Colposcopy 18th march - results took six weeks, unsatisfactory sample

Colposcopy 11th may - cgnic and cin3, possibly cancer cells too, but they weren't sure

Colposcopy 26th may - cgnic and cin 3 only

Blood samples for kidney and liver 27th may -normal

Mri scan 12th June- all clear

Letz treatment - 19th June. 3x4cm removed

Results 8th July - cgnic, cin3, and cancer 1b1 - 12x3mm

trachelectomy and lymph node removal scheduled 21st August

 

amyrose

Hi nat, I had exactly the same diagnosis as you in jan 2012. I had a tracelectomy and I have been clear since. The reason when they don't do a cone is the type of cancer is unpredictable and they want to make sure there is nothing left. It is for the best. The doctors tell you straight. If there was more to say they would tell you. I can honestly say the treatment wasn't that bad. A bit uncomfortable but not terrible. I was out of hodpitsl in two days. I put it behind me pretty quickly. Please try not to worry. with such an early stage the outlook is really good. Hopefully this time next year you will hsve all of this behind you. Keep the faith and trust what the professionals tell you xxxx

Nat83

Hi amyrose,

It's lovely news to hear thhav you and others in similar situations have had such a good outcome. I do hope I'll be in that position, and possibly even lucky enough to still have children. The first gynae who saw me told me I should be expecting this, but I decided she was scaremongering me unnecessarily, especially when the next biopsy came back clear. I felt it was all over and was just in the middle of getting my life back on track when the lletz results came through. So much drama, andobviously terrified. The waiting on appointments is the worst.

Thank you for your positive messages and I hope I can get things sorted soon and back to normal agaIn. 

 

Nat x

Smear test 2nd jan 15 - hpv16 but pap normal

Smear test 5th feb - minor changes

Went to gum clinic to ask for colposcopy 12th feb due to vaginal bleeding after sex.

Colposcopy 18th march - results took six weeks, unsatisfactory sample

Colposcopy 11th may - cgnic and cin3, possibly cancer cells too, but they weren't sure

Colposcopy 26th may - cgnic and cin 3 only

Blood samples for kidney and liver 27th may -normal

Mri scan 12th June- all clear

Letz treatment - 19th June. 3x4cm removed

Results 8th July - cgnic, cin3, and cancer 1b1 - 12x3mm

trachelectomy and lymph node removal scheduled 21st August

 

Moonfish

I hope you got some sleep. I think I'm 1b something  - my Doc does not mention grades, I only knew about them from here. Husband has no recollection of her mentioning. It will probably be in the letter she will send outlining our meeting. Keep breathing! ;-)

June 2015 Severe changes, biopsy, adenocarcinoma, MRI, LLETZ... Rad Hysterectomy booked for 4th August rearranged for 11 August.

All clear 18th August 2015. Started Mistletoe therapy (Iscador) in September, Stopped after a bit.

Nat83

Hi moon fish,

Managed Some  sleep , but it's always a bit of a challenge these days. My journey of worrying about this started so longago, that I actually seem less worried now. Maybe I should just start expecting worse. And then that way I'll cope better. WHo knows, what a cruel joke we are being played, but we are so muchluckier then some. The only good thing in this at the moment is knowing that thousands of women have hysterectomys and they're all fine. I also feel lucky that this new procedure has been deemed a safe enough option.  There is no doubt that if I am lucky enough to still have kids, I will definitely have a hysterectomy after. It seems so part of Who I am, having a womb, it's seems strange to think I could be a woman without it. Oh well.

Smear test 2nd jan 15 - hpv16 but pap normal

Smear test 5th feb - minor changes

Went to gum clinic to ask for colposcopy 12th feb due to vaginal bleeding after sex.

Colposcopy 18th march - results took six weeks, unsatisfactory sample

Colposcopy 11th may - cgnic and cin3, possibly cancer cells too, but they weren't sure

Colposcopy 26th may - cgnic and cin 3 only

Blood samples for kidney and liver 27th may -normal

Mri scan 12th June- all clear

Letz treatment - 19th June. 3x4cm removed

Results 8th July - cgnic, cin3, and cancer 1b1 - 12x3mm

trachelectomy and lymph node removal scheduled 21st August

 

Kimmyd82

Hi Nat 

I'm so sorry to hear what ur going through.  My situation is a bit different but the uncertainty and waiting is just awful.  I was wondering where in Scotland ur from? I'm from Aberdeen and have struggled to find a support group, albeit I think it would be massively helpful as could do with meeting people going through this.

I have been to clan and the Maggie centre at the hospital and they have been lovely but I think they are better with helping with general info and support whereas I think talking to someone who is going through this could be helpful. 

 

This is site has really helped me.  Feel free to give me a shout 

Kimmy

Nat83

Hi kimmy, 

Im not sure what yoursituation is,but I hope you're in a good place. 

I used to live in Aberdeen for 8 years, and do really miss it. Now I live just outside of Glasgow. They siad i will be treated at the beatson centre, but got conflicting information as my oncologist will be in glasgow royal infirmary. 

Apparently though the trachelechtomy can only be done in London?? 

Anyway, I have joined the Scotland support group which is run in Glasgow. The next meeting is not till the 22nd August. Maybe worth trying toadvertise on here asking for any other people in Aberdeen affected who would want to organise something?

Nat

Smear test 2nd jan 15 - hpv16 but pap normal

Smear test 5th feb - minor changes

Went to gum clinic to ask for colposcopy 12th feb due to vaginal bleeding after sex.

Colposcopy 18th march - results took six weeks, unsatisfactory sample

Colposcopy 11th may - cgnic and cin3, possibly cancer cells too, but they weren't sure

Colposcopy 26th may - cgnic and cin 3 only

Blood samples for kidney and liver 27th may -normal

Mri scan 12th June- all clear

Letz treatment - 19th June. 3x4cm removed

Results 8th July - cgnic, cin3, and cancer 1b1 - 12x3mm

trachelectomy and lymph node removal scheduled 21st August

 

Kimmyd82

Hi Nat

im doing ok was diagnosed a few weeks ago and had scans etc and waiting for staging results and treatment on wed.  I think I have a 2a but not been confirmed yet so bit of a tough time.  I might ask around for any aberdonions as I think meeting people going through the same thing would be helpful, particularly as there seems to be a lot of regional differences in the support and information you are given at my stage.

 

im glad you found a group and hope it is helpful.

 

kimmy

sarah85

Hi Nat,

I can guess just how scared you are right now and am sending you lots of good wishes. I was in a very similar situation to yourself all too recently. Diagnosed with cancer following a cone biopsy in April for CGIN....aged 30 with no children yet. The diagnosis completely knocked me for six and I'm still working through everything now but I'm now on the other side! If your tumour is smaller than 2cm they can do the operation vaginally with only 4 small holes in your tummy to take the lymph nodes....I had this done on June 15th and they've since told me I'm all clear :)

The surgery recovery has been a trial...I'm awful at sitting still...but it's so do-able. I stayed in hospital for 3 nights and since then I've slowly got stronger with a couple of small setbacks but all is good now. 

The world seems like a scary place when all this is going on...you don't know why the hell this is happening to you and I personally found it very difficult dealing with the prospect of my own mortality and the possible loss of my fertility. I also felt I was being a huge miserable burden on my partner and friends and family but it gets better I swear!

I was encouraged to write a diary by a counsellor and this has really helped me to analyse and process my journey in my head. I've never kept a diary before so I was sceptical but I really enjoy offloading into it now. I also took time to think about my life up to now and thought about what having cancer could do for me...what could it make me better at?? I've written a bucket list with this in mind and it's made me more focussed on what I want from my life...sounds cheesy but it's kept me feeling positive. Maybe you could try this? And I would definitely recommend some counselling as spouting all your emotions and anger out at someone who doesn't know you personally is such a relief....I felt there were only so many times I could do this with my family as I felt such a burden. You can access this through the hospital usually but I went through occupational health at work.

If you have any questions about the surgery or anything else please PM me. It's bloody difficult but I promise you'll be on the other side soon and just getting the op out of the way is such a relief mentally.

Big hugs, Sarah xx

 

 

 

Abnormal smear results showing CGIN March 2015

Cone biopsy April 2015

Diagnosed with adenocarcinoma stage 1b1 May 2015

Booked for vaginal trachelectomy plus laproscopic lymph node removal booked for 15th June 2015

All clear received July 2015.. No further treatment required :)

Lymphoedema in left leg and groin

Sarah T

Hi Nat 

I think I responded to you on another post but just wanted to say hi again and hope you are doing ok? well as ok as you can be.  Xxxx

Sarah thanks for your post I might try writing a diary it might help me I know I am going to struggle not being as active as I normalls am. I have found the waiting for the operation very stressful I am nervous but just want it out of the way now. Hope you continue recovering well. Xxxx

Up to date with smears and all previous smears normal

March 15 smear test came back borderline with HPV

April 15 Colposcopy and biopsy

April 15 result cin3 

lletz treatment 30 April 15

June 15 a 5 week wait to be told cc stage 1a1 was found in biopsy

Mdt meeting decided hysterectomy recommendation as other areas of cin3 and cgin too  

pre op and ultrasound

Total Hysterectomy 20th July 15 - Biopsy found no further cc 

 May 16 granulated tissue removed biopsy clear 

 

More Information

Cervical cancer