Anyone offer hope to our devastated family?

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My husband had 40%of his lung removed in December due to lung cancer & was doing brilliantly until he fell last Tuesday & was taken to hospital where they gave us the devastating news that the cancer had spread to his brain. Our family are in pieces trying to come to terms with this. I feel very angry & bitter towards the oncology department as our GP had raised her concerns with them in February as his voice had gone weak & husky. Despite seeing the oncologist after she’d raised this & the 3 monthly scan showing minimal changes in the lymph nodes by the bronchial tube they didn’t do a head MRI. Our GP also raised her concerns with oncology a month ago as my husband had begun to stumble...they said they’d add a head CT to his next 3 monthly CT (which was due this week). However the CT department told us they’d put him on the waiting list as scans weren’t being booked.

I appreciate that everything has been thrown into chaos with Covid 19 but the advice has always been that if you have worries speak to your GP. We feel monumentally let down. My husband has been discharged & is taking steroids & anti seizure medication, apparently the oncology &MDT are having a meeting to discuss a treatment plan but we’re in the dark.

Please please can anyone offer any positive advice on any treatments they’ve had which bought more time? My husband is only 67 & we can’t just give up on him yet. He’s my rock & our sons world. I’m so very sad, bitter & desperate.

FormerMember over 3 years ago

Hi Kernowp

Sorry to read that your husband is having these problems. Hopefully the steroids and anti seizure medication will help control any symptoms he might be having.

It is so hard right now for all and it is difficult to get formal diagnosis right now for cancer patients due to the limitations. Of course you are angry and have a reason to feel that way. Sadly they are constrained from acting because of Covid 19.

Hope, I was found to have two large brain mets in April 2019... I was lucky, they managed to operate and remove both. I scanned again weeks later to be told already reoccurring. Full brain radiotherapy July 2019. 5 rounds of chemotherapy started September 2019 finished December 2019 and resulted in a NED scan. Started immunotherapy January 2020, March MRI of head seemed okay and due to get an appointment for a scan towards the end of this month. Whilst I have been incredibly lucky in some ways, I hope this gives you some hope. Ultimately he does need to be scanned properly to give him a treatment plan.

Have you contacted his team to let them know your concerns? I know you are angry with them but they may not have control over who and when they get to do the scans (though like you say, perhaps they should have acted sooner).

I hope you are getting support for yourself and accessing talking therapies in order for you to process your emotions and deal with the anger. You can call here freephone 8am to 8pm on 0808 808 00 00 to get help with pointing you in the right direction to access the help near you.

Jewel08 over 3 years ago in reply to FormerMember

Thank you Gina for your kind reply. It’s good to hear some positive news as everywhere I look it’s bleak. You have given me some much needed hope.

I wish you good luck with your next scan, I hope they continue to give you good news.

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Anyone offer hope to our devastated family?