New to this forum sadly not new to Cancer

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So last year I was diagnosed with both breast and bowel cancer, both were primary. Luckily an operation was enough to remove the tumour in my bowel and I didn’t need any more treatment for that, but I did have eight rounds of chemo and two weeks of radio for the breast cancer, which all finished about five months ago. 

This week I have been diagnosed with a brain tumour. I’m absolutely devastated as I was just starting to get my life back on track. I don’t know what type it is yet or what my prognosis is or treatment plan but I’m genuinely pretty scared as my dad died of the same thing at the age, I am now which is only 44.

I have Lynch syndrome and they think it’s linked to that. I don’t know there’s anyone else out there who has similar? Just wanted to put my fears out there as I’m going to need a lot of support during this time and I don’t know anyone that’s been through this

  • HI Shellbell24

    a warm welcome to the online community. So sorry to hear about all that you're going through. Life is too cruel.

    I've been supporting my husband through his stage 4 brain tumour journey since his diagnosis in Sept 2020. One thing I've learned through time is to take things one step at a time. Focus on the facts that your team have told you and steer well clear of Dr Google. He's a scary dude! 

    The family connection is also a scary thought. We're in the same position. My husband is now 53 but his mum died of a primary brain tumour back in 1993 aged 58. Seems a bit of a co-incidence but it was so long ago that her records had been destroyed so we'll never know if they are linked or not. I asked the neurosurgeon back in Sept 2020 if it was hereditary or genetic and he said no and put it down to sheer bad luck. I hope he's right for the sake of my two grown up children.

    This is a safe and supportive space so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi  thank you so much for responding. I’m sorry to hear your husband has been battling for over two years. How is he doing?

    Yes, I think I just have to take each stage as it comes. I’m still awaiting further scans which is frustrating as I can’t seem to get hold of anybody to find out when that will be the waiting I think is the absolute worst.

    it’s a shame you can’t get the genes tested to see if it’s likely to affect your kids that must be horrible. I think because I was young to be having bowel cancer that’s why they checked me and my dad had it at 32 even though that was back in the 80s and like you say, the records have been destroyed,  but they still believed me and tested me and lo and behold. I have the gene. Thankfully, my sister doesn’t and therefore my nieces don’t so that’s a huge relief.

    thank you again and I’m wishing you and your husband all the very best take care

  • HI Shellbell24

    All things considered G is doing great. He remained stable until Nov 2022 when a routine maintenance MRI detected fresh tumour growth. He was transferred to the palliative care phase at the end of February but still remains physically very active. His tumour (glioblastoma) impacted his speech/language and understanding so his symptoms are more like dementia than cancer. 

    He took a turn for the worse a couple of weeks ago and after a couple of short stays in the local hospice we know it is just a matter of time. 

    Don't let this tale scare you, please! He has been very unlucky that this was his diagnosis but he has dealt with it incredibly well. 

    Hope you get some answers soon. Not knowing is a thousand times worse than knowing,

    Stay strong.

    Love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Oh  i’m so sorry to hear that. At least he won’t realise what is going on. I think that is some relief although I think it’s harder on the family. My Nan had dementia so I know how tough that is.

    I won’t let this scare me. I know my tumour is quite small it’s just a case of whether it’s come from another Cancer so waiting for the CT scan is torture.

    Well I hope your husband is comfortable and his last days are pain-free. I know it’s not going to be so nice but,I hope your husband is comfortable and his last days are pain-free. I know it’s not going to be easy. So take care xxx

  • thank you Slight smile

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm