The Fight Starts Now

I received my diagnosis on Thursday of CC 1b1 after nearly 5 years of abnormal smear results, colposcopy, hysterectomy, EUA, biopsy, MRI,  & CAT Scan so it feels like I have slipped through the net or haven't been monitored closely enough, but I'm here now so I have to face this hurdle too.

After speaking to my Gynaecolgist, I was advised to go for radiotherapy as a belt & braces approach & I would be right as rain,  so when I did recieve my diagnosis from the Consultant Oncologist on Thursday I was totally gobsmacked that I now face radio-chemo (Cisplatin) & brachy, not quite what I was advised. 

I have slowly come to terms with it over the weekend having a few low moments which I have dragged myself out of, but just feel sick with worry about what is to come, and how I am going to cope with it 

Big hugs didn't want to read and run. You sound strong minded cc is very treatable and I'm sure you will be closely looked after now. 

but again big big hugs it sounds like you have had a hard time aleady but you got through all of that so you can with this as well xx

Bless you Sarah & thank you <3

Hiya :-)

I too was a bit stunned to find that after my hysterectomy it was deemed 'wise' to have radiotherapy and then the advice was upgraded to chemo rads followed by brachy. It is generally regarded as the best possible treatment / insurance against a recurrence and it's not too tough a road to go down. I have no regrets about my treatment (though if I could have avoided the hysterectomy that would have been even better). I am absolutely sure that you will take it all in your stride as we all seem to. We're resilient us women :-)

Be lucky

Tivoli

xxxxx 

Aw I hope all goes well for you, I was initially diagnosed 1b, but several tests/procedures later I'm now a 2b. I have not started treatment yet, seems to be dragging on, but I'm sure it will be soon, I need chem, rads and brachy, i have my kick arse boots on so am not worried about me so much, just worry about the effect on my children 

 

hope all goes,well for you xx

Hello Worried Sick,

Sorry you've had to find us here.

Have I got this right you've already had a hysterectomy & after been diagnosed with CC? If so were? I hope this isn't too personal but if you read my signature you'll see why I'm asking.

Thanks,

Clare xxx

Hi Clare,

Yes that's correct. I had a hysterectomy 3 years ago as the persistent cells would not go, and I had recieved all the Colposcopy I could. I received 6 monthy check ups, an EUA for biopsy which showed cancerous cells which leaves me where I am.  This was all done in West Lothian, Scotland.  My Clinical Oncologist has written to query the treatment and advised me to put in a complaint, which I did, but now my energies are on fighting this and getting over it,

 

My very best wishes for you that you remain clear,

 

Carol x

Thanks Tracy,  

I hope you start your treatment soon and are soon on the road to recovery again.  You sound strong, so just stay focused and positive,

My Best Wishes to you & your family,

 

C X

Hi Tivoli,

 

Thanks for your reply,  I hope you remain well and you're right,  us women are resilient, we just have to be eh !

I just want the treatment over & done with now so i can move on,

Stay Strong 

C xxx

 

Hi Carol

Best of luck for your treatment hope you are feeling bit stronger. was it a full hysterectomy or ovaries left behind? Xx

Hi Sarah,

I had ovaries left as I was informed it may prevent an early menopause, no luck with that, the Menopause kicked in 2 weeks later, so it was bad advice.  I start my treatment on 30th  July,  roll on 3rd August when it's all over with,

xx

How are you doing? X

On reading though the Forum, I am seeing that a lot of CC was picked up during Colposcopy / LLETZ treatments.

My routine smear test picked up abnormal cells in 2010,  since then I had been attending hospital every 6 months, I had 2 further Colposcopy treatments and was told by my Consultant that due to there not being enough area left of the Cervix to treat, I would have to have a Radical Hysterectomy.

I had my Hysterectomy in July 2012, when My Uterus & Cervix were removed, I was advised by a GP to retain my ovaries to prevent early menopause.

6 Month following my Hysterectomy, I was absolutely gobsmacked when I discovered I STILL had abnormal cells present,

I went a further 2 years of having vault smears taken, until my Consultant advised me he was going to take a few biopsy's and discuss the way forward for treatment at a meeting with his colleagues.  I later discovered this was a MDT meeting !  Whoever my case was passed onto did not follow up, and infact emigrated.  All this time I was thinking they were going to contact me for treatment until I thought, enough is enough and contacted my Consultants secretary. 

I received an appointment to go in for a Vault smear and was told I was to come into hospital as a day patient for an EUA - Examination Under Anaesthetic, where they would take biopsys.  I waited but had heard nothing from him, so again, contacted his secretary.  I was called into to meet with him at the Hospital on the Gynae ward where i was told I had some 'Dodgy' cells which were misbehaving and that again, he was going to discuss with his colleagues the best way forward for treatment.  (Another MDT meeting.  In the meantime he wanted me to have a CT Scan & MRI Scan just to make sure everything was still ok.

I received a call from the local hospital saying they were to arrange an appointment for an MRI scan, I was also awaiting an MRI Scan for a neck injury, so when I asked which scan it was for, I was informed it's a chest scan to make sure nothing has spread !!!! I tried to phone the Consultant immediately to find out what the hell was going on.  When nearly 6 days later I managed to get a hold of him, he arranged another appointment for me to come in and see him and told me it was all just routine.

When I went in, I was gobsmacked to hear him say they wanted to treat me with Radiotherapy as the cells were still not behaving themselves.  I had finally had enough by that stage and aked him outright if I had Cancer,  My heart sank when he replied Yes !!  I was told I would have a session of Radiotherapy which would burn away all the bad cells and I'd be right as rain again !!!   You can imagine just how devastated I was when I received an appointment to see the Consultant at Radiology to be told I had Cervical Cancer Stage 1b1 and that I would be receiving Chemo-Radiotherapy & Brachytherapy to treat the Cancer.   Cancer, not dodgy cells as i had been told so often.

I left that Radiology Department in a daze and cried for days, thinking my days were numbered.  I thought to myself, well at least now I know the truth,  I know what I am dealing with so we just have to bite the bullet and get on with this as best we can.  

I start my treatment on 30th July and have the finishing line of the 3rd of August to aim for.

I'm sorry for rambing on so much, but I don't want any other woman to go through the waffle and deceit as I see it, that I have had to put up with.  I put my trust and my health in the hands of that Consultant and cannot believe despite all that original treatment that I have landed here.  I am now focusing my energy on getting well again and getting through this.  

Do ask Questions, Don't let them baffle you with waffle,  and ask them to clarify what they mean.  I am an educated woman with letters after my name and cannot believe professional people deal with their patients in this manner.

On reading though the Forum, I am seeing that a lot of CC was picked up during Colposcopy / LLETZ treatments.

My routine smear test picked up abnormal cells in 2010,  since then I had been attending hospital every 6 months, I had 2 further Colposcopy treatments and was told by my Consultant that due to there not being enough area left of the Cervix to treat, I would have to have a Radical Hysterectomy.

I had my Hysterectomy in July 2012, when My Uterus & Cervix were removed, I was advised by a GP to retain my ovaries to prevent early menopause.

6 Month following my Hysterectomy, I was absolutely gobsmacked when I discovered I STILL had abnormal cells present,

I went a further 2 years of having vault smears taken, until my Consultant advised me he was going to take a few biopsy's and discuss the way forward for treatment at a meeting with his colleagues.  I later discovered this was a MDT meeting !  Whoever my case was passed onto did not follow up, and infact emigrated.  All this time I was thinking they were going to contact me for treatment until I thought, enough is enough and contacted my Consultants secretary. 

I received an appointment to go in for a Vault smear and was told I was to come into hospital as a day patient for an EUA - Examination Under Anaesthetic, where they would take biopsys.  I waited but had heard nothing from him, so again, contacted his secretary.  I was called into to meet with him at the Hospital on the Gynae ward where i was told I had some 'Dodgy' cells which were misbehaving and that again, he was going to discuss with his colleagues the best way forward for treatment.  (Another MDT meeting.  In the meantime he wanted me to have a CT Scan & MRI Scan just to make sure everything was still ok.

I received a call from the local hospital saying they were to arrange an appointment for an MRI scan, I was also awaiting an MRI Scan for a neck injury, so when I asked which scan it was for, I was informed it's a chest scan to make sure nothing has spread !!!! I tried to phone the Consultant immediately to find out what the hell was going on.  When nearly 6 days later I managed to get a hold of him, he arranged another appointment for me to come in and see him and told me it was all just routine.

When I went in, I was gobsmacked to hear him say they wanted to treat me with Radiotherapy as the cells were still not behaving themselves.  I had finally had enough by that stage and aked him outright if I had Cancer,  My heart sank when he replied Yes !!  I was told I would have a session of Radiotherapy which would burn away all the bad cells and I'd be right as rain again !!!   You can imagine just how devastated I was when I received an appointment to see the Consultant at Radiology to be told I had Cervical Cancer Stage 1b1 and that I would be receiving Chemo-Radiotherapy & Brachytherapy to treat the Cancer.   Cancer, not dodgy cells as i had been told so often.

I left that Radiology Department in a daze and cried for days, thinking my days were numbered.  I thought to myself, well at least now I know the truth,  I know what I am dealing with so we just have to bite the bullet and get on with this as best we can.  

I start my treatment on 30th July and have the finishing line of the 3rd of August to aim for.

I'm sorry for rambing on so much, but I don't want any other woman to go through the waffle and deceit as I see it, that I have had to put up with.  I put my trust and my health in the hands of that Consultant and cannot believe despite all that original treatment that I have landed here.  I am now focusing my energy on getting well again and getting through this.  

Do ask Questions, Don't let them baffle you with waffle,  and ask them to clarify what they mean.  I am an educated woman with letters after my name and cannot believe professional people deal with their patients in this manner.

Hi WorriedSick,

I have just read your post above and I am apalled! My mouth has dropped open, literally! If it makes you feel any better at all, when my cancer was spotted the first thing that happened was an ultrasound and the next thing I was marched off for a chest X-ray. Presumably if you have been staged as 1b1 this means you have now had your scan results? I am glad to hear that your case is now, finally, being taken seriously and that you are being offered the complete 3-course banquet of therapies.

Please do your level best to enjoy the next five weeks before your therapies begin, treat yourself well, you really deserve it. I am here beside you all the way.

Be lucky :-)

Tivoli

xxxxx

Hi Tivoli,

 

Thank you so much for your kind and very supportive reply.  Yes I've had all my scans and results now, so it's just a matter of the treatment starting on the 30th June (not July)as I said in my last post. 

I really hope that all is well for you now and you are cancer free and living life to the full,

Bless you,

 

Carol xxxxxx

Hi Worriedsick, 

I begin my 3 course feast (thanks Tivoli,  that made me giggle)  on the 29th.  The stress and worry your medical team has put you throughis unbelievable.  Please make a formal complaint so the multitude of failures can be investigated and lessons can be learnt.  No-one should have to endure that. 

I hope your treatment goes well.  Lets keep our fingers crossed that tbe list of side effects stays away. 

Best of luck

Rachel. X

Hi Rachel,

Thanks you for your kind reply.  I have already put in a formal complaint, as advised to by the Consultant Oncologist who has also requested a full breakdown of my appointments to establish the facts of what has happened so he can submit a complaint also.  It won't change the journey I am now on, but if it prevents that catalogue of errors occuring with any other womans treatment / diagnosis, then it's worth it.

I hope all goes well for you throughout your 3 course Feast !!! Tivoli certainly has a great way with words :-)

Wishing you the very best of luck,

Carol x

 

Poor you worried sick certainly a rough ride for you and thank god you chased them and didn't think no news is good news.  I think you are right you need to focus on your journey now and be positive. Big hugs xxx

Hi Sarah T,

 

Thank you & bless you xxx