Lifestyle

Life with a Pituitary Tumour | 3 Years All Clear

‘I am sorry to tell you this, but you have a tumour’

Words you do not expect to hear in your lifetime, let alone when you are 17. Hearing them words at first meant nothing, I felt the same, there was no upset , no shock, nothing, it was just like my brain blocked it all out. It was not until an hour or so after it actually hit me, I realised what was going on!

[This post is to help people going through the same or a similar situation].

At the age of 17, I was finishing up my first year in Sixth Form and found myself failing 3 out of the 4 subjects I was taking, this led to me nearly dropping out at the end of year 12. A few days after my exams however, I got the diagnosis and wanted to prove to myself that I could complete school and go to university. I did have to drop 2 A Levels due to my illness, but things did work out. Granted, it took me 3 years to complete Sixth Form instead of the usual 2, but I got there in the end! Now I am only 6 months away from my university graduation, I have spent a summer in America and have so many exciting plans over the next few months.

Diagnosis

I was diagnosed with a tumour on my pituitary gland, also known as the ‘master gland’, situated at the base of the brain. The pituitary gland controls the growth hormones, thyroid and prolactin, amongst others. I suffered some symptoms before and during diagnosis. I got the expected headaches and had trouble with my vision, of course, at the time we thought I just needed glasses (I actually did) and everything would be fine. The headaches were still there and I just thought headaches were unfortunately normal with me, something that I was learning to live with, and they would never go. Later down the line, my menstrual cycle stopped and I started to put weight on and could not lose it, despite eating the same and doing some exercise.

I was diagnosed through a blood test which determined that my prolactin levels were too high, then an MRI scan was undergone and so treatment began in July 2012.

Tablets, tablets and more tablets

I was put on medication straightaway and after around 3 months, there were signs of the tumour shrinking. I was feeling generally good and life was generally okay. I was in Year 13, and about to re-sit my exams. Everything was going well until Christmas 2012. The symptoms were coming back and I felt awful, I was struggling with school and was fatigue all the time, with my exams 4 weeks away, it was not the best time for my illness to become worse. We went back to see my first consultant after Christmas and he tried to keep telling me that the symptoms I was currently feeling were from the stress of exams and how everyone suffered the exact same symptoms when revising! After finally listening, he suggested that my dose of medication should be doubled. Well, of course I listened to him, he knows what he is doing right! Well, that was a mistake, a big one! My medication was doubled and that is when things went from bad to worse. Headaches, dizziness, nausea, fatigue, bad insomnia and lack of appetite, resulting in me losing 2 stone in under 6 months. It was not exactly the best of times, and yet I still went into school (I wonder now how I actually managed that).

I changed consultants, as the first one was not helping me at all, my medication was changed twice over the space of 3 months and I was not able to cope on them at all. Apparently I was part of the 5% of people who had bad side effects from all 3 medications. After all the stress and the long year of struggling on medication, I later found out the tumour had grown to its original size, so that year of struggling felt like a year that was well and truly wasted!

New consultant and surgery

When surgery felt like the only option left, I went to see my third consultant, and an endocrinologist, and I finally found a team that were able to help me beat this illness (third time lucky as they say). My surgery was booked for 27th January 2014, 2 weeks after my January A Level exams. It did not feel real at all (it still does not), the night before, I was very nervous, but in the morning, I was absolutely fine, no worry in sight. My operation was a great success. My consultant said because the tumour was touching my optic nerve and on a main artery, it was expected that I would need radiotherapy afterwards as some of the tumour may have to be left to avoid damaging my eyesight. Thankfully, all the tumour was removed, my eyesight undamaged and radiotherapy was not needed! Talk about the best surgeon ever!

A new beginning 

As I sit here and write this, I am excited to see what the future holds for me. I recently had my yearly check up and got the all clear. As I come up to the 3 year mark of my operation, it is clear to see how different I am as a person. I feel stronger, happier and live life to the best I can. I still see my endocrinologist every year (best endocrinologist ever!). I still hate MRI scans with a passion, and I have a feeling that will never change, but apart from that, I am all good!


The past few years have been crazy, life changing and still wonderful! From being ill and not knowing what the future held, to spending 13 weeks in America and being currently close to graduating from university!

It certainly was a scary time and still was after, especially when you think ‘what if it comes back’, but as I feel like a much stronger person now, I just take each day as it comes, I no longer worry about the future!

If you are currently struggling from  a pituitary tumour, or something related to your pituitary gland, then make sure to visit the Pituitary Foundation, a great charity in helping and spreading awareness for pituitary conditions, or email me at littlelifeofrachel@hotmail.com.

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43 thoughts on “Life with a Pituitary Tumour | 3 Years All Clear

      1. Hi. Sorry for the late reply. After the operation I was okay, I didn’t actually suffer from any pain whilst I was in the hospital, the only pain I had was from where the equipment during surgery was used to keep my head still.
        Whilst in hospital, you will have checks and they will ask questions to see if you’re still able to, for example, I was asked who’s the prime minister? What’s the date? It got annoying after a while, but it’s part of the joys of having the operation.
        I was only in the hospital for 3 days, as they like to get you out quickly so you don’t risk developing infections etc. I did start to get headaches when I got home though, so thank god for painkillers, you will also get steroids to stop any swelling. You won’t be on a big dose, so don’t worry about hearing the word steroid. I did feel very weak after the operation, but do not rush to get back to normal. Rest was the best thing for me and then I was back in school after 6 weeks. Good luck with the operation, it’s not as bad as you would think! And I wish you a speedy recovery! You’ve got this! x

  1. This is amazing. I’m glad you pulled through and had a successful surgery. You’re a real fighter after all you’ve been through. This post is so powerful. It will be helpful to others going through the same thing. xoxo

  2. This was such an eye opening beautiful post to read! You are so strong and I really admire you greatly for posting this 💖

  3. Well done for posting this. You’ve been through so much, but at the same time you’ve come so far! I also had to take a 3rd year on sixth form (I’m in my 3rd year now) due to being diagnosed with Lymphoma right before exams, and having to take them during treatment, so in some ways, I related to this post so much.

    http://www.johannamontana.wordpress.com

  4. I can’t imagine how it must have been for you, you’re so brave for posting this. It’ll be so helpful for those going through the same thing. You truly are inspiring and such a strong person. You’ve shown that you can achieve anything you want no matter what. I’m so happy that you’ve been able to recover from it and continue to do what you aspire to. Proud of you xx

  5. Thank god for that surgeon! I’m going to school right now to be a nurse and it’s so sad that a big portion of illnesses are caused by incorrectly diagnosing already I’ll patients. It’s unfortunate something similar happened to you it sounds like with that second guy. Glad you’re feeling so much better! Thanks for sharing your story!

    1. Tell me about it! It is awful to see, especially when it actually happens to yourself! I hope everything goes well and I am sure you will be a wonderful nurse. Thank you so much. Wishing you all the best.

  6. I know exactly what you’ve been through had exactly the same and also a fellow North Wales resident. Good luck in your recover and managing the hormone replacements.

  7. Aw, you’re so strong and are a figure of inspiration to me because you’re a fighter. Better days will come, I seriously wish u all the happiness n love in the world lovely. You are strong and amazing. I hope this year is your year!

    sami x

  8. This was such an inspiring post to read and it’s amazing the journey you’ve been on. It’s great that you’ve made something good out of something bad and look at the result! This was so lovely Rachel xx

    Eleanorclaudie.com

  9. Oh lovely this made me catch my breath slightly, what a journey! Your optimism is so inspiring and has left me rather speechless, this post is amazing, love ya xx

  10. Wow girl you’ve through the mill! How incredibly strong and brave you were to carry on, truly inspirational!!
    Wishing you lots of health and happiness for many years to come

    Kisses and love
    Jazziepickles xoxo

  11. What an amazing eye-opening post. 17 is no age to have to experience things like this, but you’re so strong and I’m so glad your surgery was a success. You seem to be thriving now and I’m so happy that instead of letting this define you, you went on to kick it’s arse and do the best you could with your education. Truly inspiring!

    XO
    Ashley
    https://ashlexyz.wordpress.com

  12. Wonderful blog. Makes you realise what’s important. Thanks for sharing was beautiful I hope anyone going through something like this can use this as an inspiration.

    I’m glad you’re well now. I wish you all the best, look forward to reading your next blog.

    Check out my latest blog post if you have the time:
    http://wp.me/p7zNkT-4i

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