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Need a friend who knows what it's like

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Em141
Need a friend who knows what it's like

Hi everyone
I've never done this sort of thing before so here goes....
Back in March 2015 I found out I was pregnant with my 1st baby. Overjoyed to say the least!! However from day one I had bleeding, heavy with clots. I was told it was implantation bleeding, then a miscarriage but I kept doing tests and I was still pregnant. I went for a scan and there was my 6 wk old baby! Heartbeat normal no problems. I was still bleeding. On and on the bleeding went and I'd had a number of scans and the pregnancy was still ok. On closer examination, there was what was thought to be a fibroid on my cervix. Fine, not a problem, means I'll have a c-section, but ok.
This fibroid kept growing and I was still bleeding. I was referred for a colposcopy and then a biopsy was taken. The consultant reassured me that nothing looked suspicious.
Two weeks later I was diagnosed with cancer. Stage 1b2.
I was given the option of termination to have chemo/radiotherapy but I opted for chemo alone to see how I responded. Thankfully I responded well and my tumour shrank. My baby was growing well and the chemo was working.
I noticed my baby's movements were slow and unusual so went for assessment. My baby's placenta had started to bleed and come away from my uterus. My baby was in trouble. I was rushed for emergency c-section and my baby was born at 29 weeks. Small but doing well.
I then underwent a further chemo and it was decided I should have a radical hysterectomy. So I did.
At the end of November 2015 my baby was discharged from the neonatal unit and I was discharged from the gynae ward following my operation.
Just before Christmas 2015, I was given the all clear. Best present ever!
So I'm now 28 years old with a new baby and I've been plunged into the menopause!! Great! Feel very alone and no one knows what it's like!
Later in April 2016 my one and only smear result was recalled from back in 2013. In 2013 I was given a negative/normal result.
However on closer inspection- my smear wasn't normal. It was severe. I had severe dyskariosis at this point which was undetected. If I'd been diagnosed in 2013, I would not of had to have chemo, a premature baby, a hysterectomy and lose my fertility.
Please, if there is anyone out there with a similar story please get in touch. I have great friends and family but no one truly knows what it's like to be in my situation.
I'm currently all clear now of cancer and have a beautiful baby who saved my life.
My scars have healed but psychologically the pain and upset is very much raw.
Sending my love to all you ladies out there. Xx

AmyT
AmyT's picture

Hi

So sorry to hear what you have been through but so glad to also hear you are now cancer free.

I did not go through the trauma that you must have had during your pregnancy, but I was diagnosed 11 months after my baby was born. I am currently just over a week after RH and awaiting my results to see if I am now free of cancer (fingers crossed!).

I have many questions and anger over my screening history like you, as I had 5 years normal smears after a Lletz in 2008 and was put back to 3 yearly smears, the first one after a 3 yr gap i get diagnosed with CC! My nurse says all my smear results will now be reviewed - I am horrified to hear yours was reviewed and found to have shown changes but you were told it was normal - how can that happen?!!! I also had no colposcopy follow up after my Lletz and have heard that maybe i should have - I am going to request my medical notes.

I can totally understand how you must be feeling psychologically, how quickly the relief of being cancer free gets replaced by anger at missed chances to catch it early and grief at not being able to complete your family in the way you had perhaps planned? I am currently obessing about how i have ruined my daughters life by not being able to give her any brothers and sisters. Me and my partner are older (37) and we have no family who,live close by so i am so sad to think of her all by herself after we have gone and all I can think about is how much my sister was part of my life growing up and an such good support now. Also the loss of a baby feels very real as when i came home from the hospital with a swollen belly after the RH i felt there should have been a baby in there and that some one had taken it away - dreadful feeling, i was inconsolable. 

However, i know there is so much to be thankful for and we must focus on the fact that we have our babies when so many other women never got the chance. Help is out there through councelling etc so I think im going to get some. I dont want to ruin the lovely moments i should be having with my daughter and partner by focusing on what cannot be.

Always here if you want to talk - feel free to PM me

Amyx

 

2008 - Abnormal Smear - Severe Dysk. Lletz - Cin II-III incompletely excised.

2013 - 5 yrs annual smears normal and put back to 3 yr smear.

2016, July - abnormal smear - severe dysk. CC stage 1B1 grade 2, diagnosed after coloposcopy,biopsy and MRI.

2016, Sept 5th - Radical Hysterectomy. All clear following results. 3 month follow up planned.

Mad_muskrat

So sorry to hear what you have been through, but like Amy above, glad you have been given the all clear.

There are some differences between our experiences, my daughter was 2 when I was diagnosed at the age of 32, and I managed to avoid chemo and *just* had a radical hysterectomy with removal of ovaries and lymph nodes. However also some similarities - surgical menopause at a young age, all previous smears negative (I wasn't due another one until Feb 2017 but was diagnosed in November 2015), lost fertility and a smear review which admitted to false negatives (three in fact over the course of ten years).

The menopause hasn't been too bad for me as I recognised the dose of HRT I was on was too low and my GP upped it.  I now don't have many symptoms, though do experience the odd hot flush.  I went to the HRT workshop at Lets Meet last weekend and was interested to hear that I should perhaps be having regular bone density scans to ensure the dose of oestrogen is sufficient to keep my bones strong.  I have flagged this up with my specialist nurse who in turn is speaking to my consultant about it - this might be something for you to consider as you too are very young to be going through menopause.

Emotionally, I have my ups and downs, pleased that I will hopefully be here to watch my daughter grow up, but sad that I am unable to add to my family (we had been planning to try for a second this summer) and angry that potentially this could all be avoided.  I am currently seeing a counsellor although as this is through occupational health at work it is not as regular as I would like, and I intend to go private once these sessions come to an end if I can't access it any other way as it really does help I think.

I sought advice on this forum regarding my smear audit findings ( if you click on my name you can find my post easily and it may be helpful to read) and have made the decision to pursue a clinical negligence case.  I appreciate this isn't the right course of action for everyone, but for me, ensuring that if the worst should happen and I get a recurrence, my daughter, husband and I will potentially have a higher level of financial security whilst I undergo further treatment.  In addition, I believe that often changes to protocols and training procedures are only made when mistakes are flagged up and the threat of legal action is involved (a bit cynical I know!)

Please message me if you have any questions or just want to chat!

Take care

x

Zoet33

Hello,

just wanted to say that our situations are similar - at 20 weeks pregnant with my first baby I ended up in hospital with bleeding, nothing detected, then at 34 weeks I was back in and that's when they found a 3cm tumour! Hit me like a bus and within 2 weeks I was booked in for a radical hysterectomy and c section! Was faced with so much emotion and my head a lot to take in! Thankfully for me my baby was fine.   I was late with my smears!  margins were good so the chemo i was booked in for didn't have to happen.

She is now 2 and I still have times when am angry/upset/fed up that I can't ever experience another baby but I thank my lucky stars that my baby saved my life and she is happy and is the thing that makes me proud and happy.  Even now 2 years later I still have up and down days. 

today I have another check up and it always brings up all the emotions - think that's why I have had a look at the forum agaIn! This is definitely a great place to go when your finding it a little tough! 

 

big hugs and always here if you need a chat 

 

xxx

 

 

 

Looking forward to the rest of my life :) 

TessChay
TessChay's picture

Thanks for your stories!

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Moving forward from a cancer dignosis