Brain tumour? Please help.

Please bare with me, I know already that what I’m saying is stupid and ignorant but please let me explain the situation. This may be quite long, so I hopefully won’t have to add anything else. 

Back in Feb of this year I had a case of the flu, and it was actually flu and not just a cold - I was unwell for about a week and subsequently when I got better I felt the lymph nodes on my neck were enlarged, I left it 10 days to give them chance to go down as I thought it was flu related and then mentioned it to the doctor when I was there for a different reason as a bit of a ‘just letting you know’ and was expecting her to say well it’s just the flu they are fine. 
However she sent me for a full neck ultrasound, the lymph nodes were actually fine in the end, but my doctor called me back into the office a week later (already knew it was bad because this never happens) and they found a 2cm tumour in my thyroid gland, my whole life collapsed and I felt like I was watching a film.

I was absolutely terrified, I couldn’t do anything, I had subsequent scans, biopsies, appointments all pointing to the suspiciousness of this tumour all of which took 2 months, until I had surgery to remove the tumour in May - after my surgery was surgeon told me that they found a further tumour behind my left lobe of thyroid gland, extra tissue and they removed all of my level 6 lymph nodes as a precaution. 

But let me emphasise the impact those 2 months had on me, I was like a mad woman, my OH (other half) had to quit his job as I couldn’t function, I was the crappest mother because I was crying all of the time, I was praying to a god that I had never praised before and I wasn’t sleeping - even though in my case the prognosis was a good one. I started writing my children letters for each of their birthdays. It was a eye opening experience and I’ll never forget it.

It seems it was one of the lucky ones. Despite multiple specialists and my surgeon saying there was only a 5% chance this wasn’t cancer, it all turned out benign, and the suspicious lymph node was actually extra thyroid tissue with an old bleed on.
I cried happy tears as did my whole family and I felt like I could run for miles, after previously feeling so drained I couldn’t even get out of bed. 

In the weeks after my surgery I started suffering strange symptoms, I could hear my heartbeat in my right ear (most of surgery was done on right side), my eyesight was starting to become strange and I just didn’t feel great. 
I booked an optician appointment and he said I was having issues with my tracking - it continued so I went to the doctor, she said it sounded like I was suffering from inter-cranial hypertension and if it continued to go to A and E, it did continue for about a week but then the hearing my heartbeat in my ear went away and I think my eyesight has improved slightly. The optician did mention that I had some old inflammation at the back of eye probably from an old infection. 

However, and this is the main point, every single day for the past 3 months I have had a headache, and it isn’t all over, it’s on the right side of my head at the front and it feels I can pinpoint it, possibly just above my right eye half way down my forehead, it isn’t anywhere else and it starts within a minute of me waking up and lasts all day, and it’s been months. I’m terrified I have a brain tumour, there’s surely no other explanation for this and I don’t want to go through what I went through at the beginning of the year. The wait was agonising and I don’t want to become that person again, I have almost resigned myself to the fact this is a brain tumour and I’m trying to be oblivious to this fact. 
It makes it worse because after I had the all clear, we decided to try for another baby and I am 13 weeks pregnant. I don’t want to go through what I went through and I’m terrified, my partner thinks I’m being stupid but he never understood what I went through, unless you’ve been through it I don’t think anybody does.

  • So sorry to read your news, I know what its like.  In 2011 I worked for a doctor and was feeling unwell.  He just said it was because I was grieving for my husband who had died 7 weeks earliet of mesothelioma ( asbestos). I had been telling him and his wife who was the nurse that I was not right. Again they ignored everything I said until I went out for lunch with a colleague and I collapsed . She got me home and demanded the doctor get me a scan. Next day I was dianosed with a grade 4 glioblastoma. I am apparently a marvel as I am still here 8 years after my surgery, radiotherapy and chemo.  Been left with extremly bad legs and cannot walk too far, but hey I am coping with the love of my son and family.  I was frightened to, but all I can say to you is just eep going day to day and try to stay positive.  I know that sounds bland, but I truly believe being positive helps.  Its been a learning curve for me as I used to do so much, and now I can only do small things.   Stay strong, and pray, it truly helped me. 

  • hi, sorry to hear youve been through so much and now feeling poorly again. I apologise in advance that I cant really offer advice regarding brain tumours which I sincerely hope it is not, but, i can offer advice regarding benign intracranial hypertension, as I have this myself. The symptoms you have described certainly fit the condition which are very similar to a brain tumour indeed and can be very scarey. However, it is a benign condition but symtoms are distressing. As you have also said you are pregnant may I please recommend you revisit your GP for further testing ( various basic tests will help diagnosis a suspected case of benign intracranial hypertension) as it is best to get it sorted sooner rather than later to avoid worsening symptoms. Treatments vary greatly depending on severity so I cannot offer advice on treatments, sorry. As you are pregnant I advise you to see your GP as early as you can as weight increase often aggrevates symptoms of this benign condition. I hope this may have been of some help to ease your concerns a little and I wish you all the very best, take care and good luck, Karen. X

  • hey just wanted to ask, is everything ok now? Are you healthy and well?

  • Hello, thanks for checking up on this post.

     

    I am realitively well, I still have the headaches on and off but as my pregnancy progresses they calmed down significantly. Possibly hormonal linked. Doctors couldn't offer any sort of scan because of risk to baby. I am 8 months pregnant now and actually suffering heart issues instead - this could be pregnancy related or there may be something else going on. X

  • P.s. I had my optic nerve checked twice and 0 swelling. 

  • Good luck with everything.

    Enjoy your soon to be here bundle of joy. x