Another Brain Met: I had two brain mets... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Another Brain Met

Tike3 profile image

I had two brain mets from my lung cancer and radiotherapy got rid of them. I have just had another scan to check progress and it seems another small one has popped up on the opposite side, I'm devastated, it's determined to get me. I'm having a CT scan of thorax abdomen and pelvis. Consultant says if clear they will proceed with radiotherapy to brain. What is she saying then, that if cancer has spread they will just leave me to die.

I have been having chemotherapy but that was delayed due to diverticulitis caused by previous immunotherapy, so out of 4 sessions I should have had I've only had two, when I start chemo again it will be almost a 3 month gap, this really worries me because the cancer has probably had time to spread all over the place. I don't know whether to just call it a day. Thanks for taking time to read, it just helps me get it off my chest.

17 Replies

Dear Tike3

Sorry to hear they have found another spot on the brain, and understandably devastating for you.

What the consultant may have meant, is if there is spread elsewhere, then the treatment plan may change from radiotherapy to chemotherapy , targeted therapies or immunotherapy.

Please do not give up yet and wait on the results of the scans that you are having. Once you have all the information and proposed treatment plan with the oncologist then you can decide on what to do.

Hope you hear from others in the forum who have been through the same, meanwhile this link will take you to our booklet on brain metastases: roycastle.org/app/uploads/2...

If you would like to discuss anything you can email ask the nurse at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

Thank you so much for your reassurance and link to booklet. It is a great help for me to have your support.

I had 5 spots zapped (2 different times) and have brain mri's every 4 months. Another small spot showed up and my Radiologist went right after it. I was on no treatment at the time as I took time off because of covid. Now it has been over a year since any spots have showed up in my brain. I know of many people who have had up to 20 spots zapped and they are doing just fine. Think of this as a minor setback. You will be fine! Just get rid of it!

Tike3 profile image
Tike3 in reply to Seaspray298

Thank you so much Seaspray who have really made me feel better, it also worries me that I've had no treatment but as you say you were the same because of Covid. You've made me think now that Yes I will be just fine! Thanks again Pam

Hi I had two brain mets treated with SRS in November 2018 then in December 2020 they came back plus another! Like you I was devastated however repeat SRS in February 2021 dealt with them. Don’t lose hope - take care best of luck ❤️

Tike3 profile image
Tike3 in reply to Elt79

Thanks Elt, it's people like you who help me to see light at the end of the tunnel and hope that it will be ok. What's SRS it must be very effective. Can I ask when you were diagnosed and has it spread anywhere else.Sending love and best wishes

Pam

Elt79 profile image
Elt79 in reply to Tike3

It’s steriotatic radiosurgery - very high dose radiation which just targets the tumours - obviously depends where they are and how big. I was diagnosed stage IV NSCLC with brain and adrenal mets in Oct 2018 with poor prognosis but still here and staying positive. All best wishes x

Tike3 profile image
Tike3 in reply to Elt79

Hi there, your doing amazingly well and your strong, there's a lot of clever stuff out there to try our best to win the fight.

I can sense you have a very positive attitude and that helps so much, I class myself as a goner most days. I'll see what my consultant says on Wednesday but doubt chemo will go ahead because of this diverticulitis.

Keep in touch and thank you for your kind words.

Pam

Elt79 profile image
Elt79 in reply to Tike3

We all have times when we think that way but just pick ourselves up and get that strength back!! You will too - hoping you have a positive meeting on Wednesday - take care of yourself you really are worth it!!❤️❤️❤️

Hi PamSo sorry to hear your latest news. I have no experience of this but its great to read other's stories about how well RT works with brain mets, even when they recur. Don't lose hope!

Sarah x

Tike3 profile image
Tike3 in reply to sassassas

Hello SarahSo nice to hear from you. How is your husband doing?

Yes, there are a lot of successful posts on here, I have to have a CT scan of thorax abdomen and pelvis first to see if anymore spread before they will do radiotherapy.

It's very cruel this disease isn't it.

Sending all my love

Pam

It is very cruel. And you’re certainly going through the mill but you seem to be taking it all in your stride, despite the bumps along the way. Credit to you! Thank you for asking, my husband is still doing well on the immunotherapy. Next scan in a month or so 🤞

Keep in touch xx

Tike3 profile image
Tike3 in reply to sassassas

I'm so happy your husband is doing well Sarah and hope everything ok with scan.

I'll let you know how I get on.

Keep in touch

Pam

Red58 profile image
Red58 in reply to Tike3

Hi Pam don’t give up your bravest person on here you willGet through it send you hugs ❤️❤️❤️

sassassas profile image
sassassas in reply to Tike3

Thanks Pam. That's lovely of you. xx

Most chemotherapy drugs do not cross the blood brain barrier. It is likely that the met was there but much too small to show up on an MRI. The delay you experienced in the chemotherapy probably had nothing to do with the development of this met.

The blood brain barrier blocks many cells from getting to the brain. Please keep us informed of any updates.

Tike3 profile image
Tike3 in reply to Denzie

Thanks for your reassuring reply.Hope you are well.

My MRI scan didn't show mets like you say, it was the brain scan

Well I'm dreading tomorrow and what Dr Summer may say, will she say there's nothing more they can do. I wouldn't have thought though Christie's in Manchester is far the best in the country.

I suppose the other scan I'm dreading is the MRI scan of thorax, pelvis and abdomen with contrast, to see if it's spread anywhere else.

Finding it hard to stay positive.

Take care Denzie and I'll let you know.

Best wishes

Pam

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