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Just diagnosed with cc and I'm terrified

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kaythomas72
Just diagnosed with cc and I'm terrified

Hi everyone I hope you don't mind me jumping in on this conversation but I'm so scared at the moment I just need all the reassurance I can get..I was diagnosed with cc on Thursday (23/02/2017) I'm so confused! I've always had my smears every 3 years..my smear in nov came back with borderline cells so I had a punch biopsy which showed CIN 2 but no cause for concern my consultant said it all looked fine there and to come back for a lletz so that's what I did...a week after having my lletz I had the dreaded call that my consultant wanted to see me to discuss my biopsy they had taken during the lettz procedure...they were very good and allowed me to go in that day as I couldn't wait as in the back of my mind I knew what they were going to say..anyway he confirmed that in his words " surprisingly they had come back with what they thought was stage 1 b cancer" and then followed it up with "but you wont die from this" I'm completely devastated..I'm a mum of 4 the youngest being 11 and the thought of leaving them is impossible. I'm booked in for a MRI next week and then I have to wait till march 15th for the MDT to discuss my case but he said it's likely I will have a hysterectomy but not in my local hospital in a hospital 100 miles away! I'm really struggling to not think negative thoughts, I cry all the time, I scream and then I have my positive moments! I'm sorry for rambling but I'm terrified and that's the only way I can describe it...I just want this MRI over with so I can rule out that it's spread anywhere else...Thankyou for listening I've found this page invaluable over the last few days and am inspiration xx

Tivoli
Tivoli's picture

Hi Kay :-)

Hopefully by now you have read Lolli and my posts on the other thread but I wanted to put a note here because I don't like to see any posts go unanswered. First of all, absolutely you won't die from this and secondly, I have no doubt that your eleven year-old will be able to cope with mum being in hospital 100 miles away for a few nights with no problems. And how pampered you will be when you get back home :-)

Please, I know it has come as a terrible shock but it really isn't the end of the world.

Be lucky :-)
Tivoli

Helpme

Sorry to hear ur news i cried  a lot at start  but now  my treatment  is nearing the end i find cry  less  everyone  here is  so lovely n helpful i wud  b lost  without  it dnt b scared  to ask anythinh sorry. Im not very  helpful bigs  hugs x

Joanne turner
Joanne turner's picture

Hi I'm actually the same as you I got told I've  cervical cancer 1a on Monday and am due to have a full hysterectomy in the coming weeks at Exeter hospital in Devon!! I'm a mum of 2 and all I can do is think the same and it scares me to think I'm going to leave them !! As when u hear cancer your think of death!! Also my  consultant said the same you will not die !! But like you the thought is just there !! And like u I'm wanting the  reassurance and I was always regular with my smears too and had the  abnormal cells removed !! Then got called back my children are 7 and 4 x only just came on this site any information I would be very thankful x

kaythomas72

Hi Joanne, it's so good to talk to someone else who is going through the same as me! I've never been so scared in my life..I've gone through every scenario that I can...hope your hysterectomy goes well for you..I'm yet to know what my treatment is going to be as having MRI and ct scan on Monday I'm just hoping that the biopsy staging which is 1b doesn't vary too much to what the scans will find!

wishing you all the luck 

Kay xx

Joanne turner
Joanne turner's picture

It's not letting me wri back 

Joanne turner
Joanne turner's picture

 Sorry this is the 3rd t time I've started the message again so it's going to be shorter I feel exactly the same as you I find myself crying when I'm alone in the middle of the night when my children have gone to bed I think the worst I've even  thought today about writing my children a book just in case I do die  I think it's just natural to go through all the motions as when you hear cancer you do you feel  but it's the end   did you  receive from your hospital understanding cancer booklet ??  I wish you all the best on your journey x

kaythomas72

Im having trouble answering you back as well x

kaythomas72

Oh my goodness I'm so glad I'm not the only one thinking like this...I've also been thinking about starting a diary for each of my children...I'm beginning to think that this is all maybe "normal" behaviour after the shock of it all! i didn't receive any info from my doctor just a brief chat about how "surprised" he was that my llMetz had come back as cc and that I would have scans now and then they would decide which would be the best way forward for me at a mdt meeting on march 15th! The waiting is endless! I'm very nervous for scans on Monday and praying it shows a similar stage to what my lletz biopsy  which he said was 1b...have you had any scans yet? Xx

Joanne turner
Joanne turner's picture

I've had no scans just my biopsy showed 1a and the best treatment would be a full hysterectomy as ive completed my family!  What a shame as the book they gave me is full of information and what treatment u can have for each stage of the cancer!! I know a full hysterectomy is offed only if u have stage 1-1b ?? It's a shame u haven't had a book and information as I think it would of help you a little more!! And I certainty think we are going through the motions and thinking th same least u will no something on Monday bless u x

Joanne turner
Joanne turner's picture

I think also depends where u live I'm in Devon, Torbay !! There really good down here and seem to not mess around I'm going Exeter for my op x

Mrs-G

Hi

I had the exact same as you,regular smears,colposcopy Doctor said very unlikely anything sinister would come back. Then I too got that phone call to come in,i knew straight away what they were going to say. Next day MRI had to wait a week for the results. I too was staged at 1B. Terrified wasnt the word,I came out of the hosptial with more cancer booklets than I knew what to do with!

Yes its very scary even though they say you will be fine there is still that nagging doubt in your mind all the time,mine didnt go away until all this was over. I was booked in for a radical hysterectomy 4 weeks later. Miles away from home but if thats where you need to be to get the best treatment than so be it. I think the worst time was meeting the professor and hearing all the things that could go wrong but they have to do this just be prepared. I wasnt and it was a huge shock.

Thankfully I dont want anymore children so having the hysterectomy was fine if it got rid of the cancer. Im now 2 months after the op and I feel great its hard to imagine that all that happened in a few months. 2 weeks after the op I got the all clear,and thats it!

So you will get through this,yes you will worry like mad and be so scared but it is manageable,im the biggest wimp going and I survived!

 

November 2nd 2016-cc diagnosed 

November 3rd 2016-MRI scan

November 8th2016-staged at 1B

December 15th-Radical hysterectomy with lymph node dissection 

January 4th 2017- All Clear

 

Joanne turner
Joanne turner's picture

How did ur hysterectomy go and how u feeling is that the cure x

Mrs-G

Hysterectomy was scary,had a real fear of being put to sleep. But before I knew it i was coming round. Unfortunately I had a reaction to morphine so it took 2 days t get the right pain relief that worked for me,soon as that was sorted I improved massivel. I stayed in 4 days only because of the pain relief. 

I found the catheter the worst to be honest.just because it's such a flipping pain! Had to be in for 10 days soon as that was out I felt much more like myself. The incisions heal really quickly but you do have to be careful I walked  a little bit each day which helped. Drink loads of peppermint water in the hospital this really helps with the wind I drank gallons of it! 

one of the Macmillan nurses said to me about day 5 or 6 you might find you just can't stop crying it's like it suddenly hits  what's happend.  And it did I woke up crying! What a mess I was all day but the next day I was fine again. 

Just don't push yourself do what feels fine for you take all the help you can get and rest,loads! In four weeks I was back at work part time. I do have trouble with numbness where the lymph nodes were taken out,i can't tell I need a wee until I'm absolutely burstin. Then I need to go straight away I can't wait that can be a nuisance but it's all manageable it could of been far worse! 

Luckly after they tested everything my surgeon told me all the cancer had actually been removed during the lletz procedure. All the hysterectomy results showed was pre cancerous cells so I would of had the op anyway but that would of been lovely go of known that after the lletz then I wouldn't of worried about them finding more cancer when I was operated on. so I have no more treatment lymph nodes were clear just waiting for ,y check up in two months.

im sure y will be fine it will all be over with before you know it xx

November 2nd 2016-cc diagnosed 

November 3rd 2016-MRI scan

November 8th2016-staged at 1B

December 15th-Radical hysterectomy with lymph node dissection 

January 4th 2017- All Clear

 

slb97

Hello ladies

You can see from my signature what my journey involved and I'm fine now. Emotionally I experienced a real roller coaster but kept reminding myself that my consultant said I would be absolutely fine and it's extremely rare to get a reoccurrence. My first check up will come round shortly but I'm optimistic although not looking forward to that colposcopy chair again! Take care and best wishes to you all xx

Smear 20.6.16

Lletz moderate changes local anaesthetic 26.7.16

Letter inviting appt 19.8.16

Appt 23.8.16 diagnosed 1a1 consultant thinks all removed at lletz

MRI 30.8.16

Follow up appt with consultant 16.9.16. Officially 1a1 squamous, tumour removed, no lymph node involvement or CGIN but unclear cin margins 

Choice of hysterectomy or Cone - chose Cone 28.9.16

All clear from cone! Check up colposcopy April 17

Ultrasound June 17 - fibroids with one near cervix

2 colposcopies - unable to take smear due to scar tissue Aug 17

Normal smear, HPV clear, Nov 18, clear Jan 20, next due Jan 21

More Information

Cervical cancer