It's Back

Hi All

 

I wasn't sure where this discussion should sit so apologies if this causes anyone upset.

 

I underwent a radical hysterectomy in August 2013 and was told I had the all clear in the September. This was after pestering various GOs and consultants for 6 years since I was 17.

 

Over Christmas I developed a cold followed by a cough like most of us and headed to my GP just to make sure it wasn't a chest infection. I was given all the usual such as menthol crystals, lozenges, decongestants and syrup. 

 

Nothing was working so I headed back to my GP another 4 times. It was only on my last visit that the doctor sent MRI for a chest x-Ray, fit my own peace of mind, and to stop me nagging. He said he was 99.9% sure it would be clear.

 

It wasn't. I had roughly 20-30 shadows across both of my lungs. I underwent a biopsy via ultrasound which was inconclusive and therefore I was referred to the (hospital name removed) where 5 nodules were removed via keyhole surgery. This was 8 days ago.

 

Thursday I found out it is cervical cancer and that my prognosis is 1-2 years. It's incurable and I will not beat this disease. It will beat me.

 

Apparently microscopic particles must have remained in my body following my hysterectomy which spread and grew in my lungs. 

 

I'm finding this quite hard to cope with and it's very difficult to speak to people in a similar situation - or those that have been here - for obvious reasons. 

 

I'm 24 and planning my own funeral. 

 

I feel let down and hard done by due to the fact I visited my GP with symptoms for years and it was all blamed on my age and the pill. I've seen this a lot in the media lately and it breaks me to know I will form another statistic of those who weren't smeared due to their age.

 

Any advice, direction or support would be great. Happy to answer questions too :) 

 

Katie

Didn't want to read and run.  I just want you to know that I'm thinking about you.  I'm the same age as you and I can't begin to imagine how you are feeling.  People like yourself inspire me to keep fighting to get the smear age lowered.  I've not been in your position, but if you ever need a friendly stranger to talk to or vent to, please send me a message.

Sending lots of love xxx 

Hello Katie - I'm so sorry to read your post, it is really saddening.  You are so frank and so truthful about how this will end for you, you are very very brave to  do so.  I wish I could give you words of encouragement but somehow I can't think of any?

I understand how you feel let down, my circumstances are totally different but I too feel let down by my doctors as I believe I should have been referred to colposcopy much sooner than I was.  I believe  that due to this delay my cancer spread to my ovaries.    

I had a radical hysterectomy too but it was followed by chemo radio & brachy - I'm sure you will be wondering why they didn't give you this treatment? I was given it because microscopic cancerous cells were found in my ovaries which were removed at the time of the surgery.  They may have travelled thoughout my body, who knows? I'm praying the chemo wil have mopped them up, but I worry every day that they are growing and multiplying.

There is no way I can give you any advice - I'd dearly love to be able to  say something to you that will be  a great help to you, God knows I would, but I know you are too intelligent to fall for any waffle I might  go over.

All I want to say is I hope you find some way to  get through this awful prognosis, I hope you have family & friends near - to be with you & support whatever you decide to do.  You are facing the thing that we all fear, I  know you must be so devastated. I don't know how that feels - yet. 

God Bless

 

Sharon

Dear Katie

You poor, poor girl - what a dreadful thing to have to go through at such a young age.  You are so brave to come out so honestly about this and if nothing else, it will certainly help others.  I have a cold at the moment and am praying it doesn't turn into a cough.

I hope and pray you have lots of love and support there for you, you certainly won't be alone with all the wonderful ladies on this site, they certainly got me through when things were tough.

I wish I could say more to comfort you, all I can say is that I'm always here if you want someone to talk to and I will be thinking of you lots.

Sending you lots of love, hugs and support.

Cheryl,xx

Hello, so sorry to hear this. This is what we all fear, you are so brave. My thoughts are with you. All my love lea xxx

My heart breaks reading your story, what an awful awful world we live in, 

i have no words to help you apart from I think you're extremely brave by sharing with us what you're going through, 

I hope one day and soon they do lower the age of cervical screening iv seen far too many cases of this and it's heartbreaking,

sending you lots of love and hugs 

 

xxx

unbelieveable. I'm so sorry to hear your story. 

Thoughts and prays are with you at this very scary time Kelly. . 

 

Katie

So sorry to read such devastating news for you. Life is so unfair sometimes.

Its the news we all fear and dread and for someone so young you seem very brave and direct. I am sure this will help you in the coming months.

Just wanted to let you know you are in my thoughts and best of luck in your ongoing treatment

Kath xx

Hi Katie,

I'm really sorry to hear your news, I know the feeling when you are told that you have an incurable diagnosis and the emotion and fear that comes with it. 

I sincerely hope that my story gives you something positve to focus on and that your outcome is as favourable as mine.

I was diagnosed in June 2010 with stage 2b adenocarcinoma and I was treated with chemo and radiotherapy ( 6 weeks external radiotherapy and 6 cycles of Cisplatin) 3 months after finishing I had an MRI scan and was told that the cancer remained but was confined to my cervix, I underwent a pelvic exetneration in Jan 2011 and was given the good news that like you after your hysterectomy they had acheved clear margins and I was all clear. I celebrated 12 months cancer free but in May 2012 I was told the devestating news that the cancer was back and had spread to my shoulder, my spine and lymph nodes in my pelvis, para aorta and chest, I began palliative chemo in June 2012 and after a gruelling 6 cycles many of which were delayed due to infections and hospital stays I finished in Oct 2012 with the news that the lymph nodes had all resolved and the shoulder and spine showed healing. On Monday this week I returned to get my latest scan results and I am still stable.

 

When I was orginally told th cancer was incurable I was told I would likely see 12 months but it would be very doubtful I would still be here after 2 years, next month marks that 2 year anniversay and I will be here!!!!

 

Often we ask and we are told numbers but every cancer is different and everyone responds differently to treatment, believe you can beat this and break everything down into small steps, for example focus on the first cycle of chemo then the 2nd and try not to look at the picture as a whole as this can be too huge and overwhelming. Planning lovely things to keep you motivated for the future also can help and gives you someting to look forward to. 

 

Has your hospital team spoken to you of treatment options available?

 

I hope that this message has brought with it some hope I know in 2012 when I looked for positive stories they were lacking but I know quite a few ladies now living with a incurable cancer diagnosis.

Good luck and keep in touch.

Lou x

 

Hi there. My cancer came back. You'll see from this site that lots of ladies beat their prognosis. The medical people can only give you their best guess. My prognosis is not good but I have not been given a timeframe. My advice is look forwards. I could be run over by a bus this week and then I would not have the luxury of analysing the situation. I have 3 girls and a husband. I have a wonderful medical team who are supportive. Sadly I have not bonded with my oncologist, but that's OK. She's doing her best for me. Feel free to pm if it would help. Some days are better than others so I focus on them. I am devastated but I am going to try not to waste my energy on worrying about what I can't change, hard I know. You will find a way to cope. Good luck and well done for getting this far and being so honest.

Karen 

Dear Katie,

I am so sorry to read your post. I am 26 (similar age group) and this isn't fair to hear that you have fought a battle and have been let down like this, I really feel for you! My thoughts are with you and you must stay in touch on here... your so brave!

Love to you and your loved ones xcx