the beginning of the journey

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the beginning of the journey

Postby zaraxxia34 » Tue Jun 19, 2012 2:34 am

My name is Zoe and I am 34 years old, based in Buckinghamshire.

I was diagnosed with acinic cell carcinoma of the left paritod gland at the end of May.

I am under the care of Dr Thompson, ENT specialist at stoke mandeville hospital, Aylesbury/wycombe hospital. He referred me to Mr Millford at the John Radcliffe hospital in Oxford due to the rare nature of my cancer and the pregnancy that runs alongside. At the moment all looks healthy on that side of things.

I am 34 and pregnant with my second child, currently 14 weeks +2. I also have a 21 month old little boy.

I had noticed the lump in February this year but at the time I was also recovering from a broken fibula and had a rash on the right side of my face which looked like half a butterfly and so was tested for lupus and some other nasty diseases. They came back with nothing. The gp said the lump maybe related to the rash on the other side- reacting to infection on my face to which I was not convinced. However I was still dealing with not walking and then worried about a rash, which I still have and has not improved.

So I didn't return to the gp surgery until the beginning of April with my son, when I was able to walk and thought my life was back on track with things to do and look forward to, including returning to work.

I spoke to a different gp about the lump, rash and then early pregnancy. She said she wanted me to have an ultrasound scan to check out use lump which was about 2.5cm at the time.

I ended up having 2 fine needle biopsies whilst at the hospital and was told I would have a consultant appointment sent through. About a week went by and then I saw Dr Thompson at stoke Mandeville and he said the results were inconclusive- could be a mixed cell adenoma or worse.

I had to go back for a core biopsy the following week and then the week after I saw my consultant again, only to be told they had found something and it was rare but thankfully currently low grade, slow growing and hopefully contained within the gland- but not guaranteed. He couldn't offer me any more information as he was not familiar with this type and so told me of my referral to oxford.

I waited patiently for a letter to come from my New consultant and he said that from what he has so far he can operate on the tumour by removal of the paritod gland. This was recommended in my second trimester and I assumed from 14 weeks onwards.

He wanted me to have an mri scan to see the extent of the tumour and I was told to wait for an appointment. Dr Thompson had said before this point that they were not happy for me to have one because of the pregnancy.

Nothing came that week and so I rang the x ray dept and they said my notes were in a pile there but no appointment had been arranged as yet. I explained that on the letter it said urgent and I assumed wrongly that that would mean days, but in actual fact meant maximum of two more weeks. I was very upset at the thought of waiting again and explained my circumstances and said my consultant will see me once the mri has been completed.

I managed to get an mri scan two days after my phone call. Which was Friday 8th June. I was told Mr Millford, oxford consultant would receive them straight away by email. In actual fact he didn't receive them until I rang secretaries the following Wednesday and they had forwarded the scan images to him.

I had an obstetrician appointment with Dr Avanti Patil and was shocked to hear that her recommendation was indeed within the second trimester but to wait until 24 weeks- ten more weeks to wait with a tumour that is growing faster because of my pregnancy hormones.

I was concerned about the further wait and wanted some form of clarification and reassurance from either consultant whose care I am under but unfortunately I couldn't reach either of them on Friday 15th. I also wanted to have the results shared from my mri. It is now Tuesday 19th June and I am no further forward. Having spoken to Mr Millfords secretary yesterday she said she had passed on the scan results and he will be making a decision from these.

I appreciate it takes a lot of thought, careful planning and many different opinions in different areas of care for me and my baby but I feel I am being left without communication and left too long.

I am still bewildered by it all and have really struggled to find useful support and information. There seems to be very little information about having cancer and being pregnant.

To be frank, I am scared and I have no control over what is happening to me.

If you have taken interest in my circumstances and feel you can offer some input, please do not hesitate to get in touch.

Kindest regards

Posts: 4
Joined: Mon Jun 18, 2012 11:25 am
Cancer Diagnosis: acinic cell carcinoma
Relationship To Patient: Self

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