Bowel Cancer and brain tumours. Is there hope?

Hi 

Welcome to the forum ! So sorry to hear about your dad ! It’s very tough to hear cancer has spread but it does not mean he does not have treatment options . It often depends on size and location of the spread but difficult as it may be right now he may get a good plan that helps him .

I am going to tag in  has he has more knowledge than me with navigating a spread to the brain . 

We are here to support you both !

Did your dad ever go for a colonoscopy? A very difficult way to find out about his diagnosis and it will take time to find more solid ground .

Take care ,

Court 

Hello Denisep,

I'm sorry to hear of the difficulties you are faced with, it is clearly a very worryingg time for you , your dad and family. 

With the information you have been given so far it must be hard for you to make sense of it. These early days are extremely challenging when we know little or understood what we are being told.

From what you've said it seems you are facing the possibility of dealing with bowel cancer with a potential spread to the brain. You said your dad had a seizure,. My symptoms was speech problems. My tumour only appeared after 2 years in treatment for other parts of my body.

I underwent open surgery for a single brain tumour, it was very frightening but surprisingly was very straightforward with practically no pain. It did come back and I had to have it done again 6 months later. I have scans every 3 months. I have had spread to other parts of my body but remain well and active. Nothing is ever certain in this journey but hope is a powerful weapon both emotionally and physically. Doing the best to look after ourselves as a patient is important, I walk every day for at least 3 miles and eat well and healthily.

With a potential secondary brain tumour the medics usually act very quickly, usually with surgery. They may prescribe steroids such as dextamethasone to reduce any brain swelling and Kepra to manage potential seizures. Options are potentially open surgery, stereotactic surgery ( SRS which is specialist radiotherapy), which is brief and painless,  I've had both.

It's an anxious time for you and am sure you feel overwhelmed. Ask lots questions on Tuesday and write anything down to remind you of what has been said and if you don't understand what is being said, ask again. Afterwards your best point of contact will probably be your specialist cancer nurse.

I hope that all makes some sense, it's a lot to take in. Please ask if there is anything else I can help with.

Best wishes

Martin

Thank you so much Court and Martin, I really appreciate you taking the time to reply to me, especially as I’m probably not making much sense at the moment.

Everything you said was very helpful, heartening and I’m grateful. It’s also good to start to learn some of these terms. I feel I need to research so much but at this point before we get word on Tuesday, I am just too terrified. 

On Wednesday it was potentially brain tumour, but by Thursday the spots of bowel cancer were found. So it’s hard to know where to start, so I’m very grateful I came here.

I’m so mindful of taking up your time but I would appreciate if you knew what sort of questions I could potentially ask on Tuesday or will that be based on what they tell us? 

Again, thank you so, so much for your kind words and encouragement. The past few days have been a whirlwind but as daddy keeps saying ‘where there’s life there’s hope’.

Hi Denisep

I'm sorry that you're going through this. It's a terrifying time for you and your family. Stay away from Google. The bowelcanceruk.org.uk site have a list of questions that you can print off, really helpful. There are lots of success stories on there. Take a pen and paper with you or maybe you could record the meeting. Once you know what you're dealing with and there's a treatment plan in place, it'll feel a bit easier. The fear that you're experiencing can make you feel unwell so do look after yourself. I've been there and it's awful. It's good that your dad's being positive, always helps. Medical treatments are so advanced now, where the impossible has become possible so hang in there.

Cheryl x 

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/questions-to-ask-your-healthcare-team

https://www.bowelcanceruk.org.uk/about-bowel-cancer/diagnosis/questions-to-ask/

Hi Chalet

I meant to do this yesterday but busy packing in between posts and totally forgot ! Thank you for reminding me . 
Hope these help  I also wanted to reassure you that you are not wasting anyone’s time . We are here to support you and your dad because we know exactly how frightening this whole thing this and by getting more information and support can reduce our fears . Of course there is my memory to overcome ! I have missed a few posts this week so apologies for that but we are most definitely here for you .

take care ,

Court 

Hi Denisep,

In relation to questions, I think the main question I would ask is "what is the main priority". Depending on the results of all the investigation, I expect it will be dealing with the brain then bowel second. When my brain tumour came to light, everything else was relegated to second priority. However, until you know the full picture it is hard to say. I see Court has sent you a link which will be useful to have to hand. With the "abnormalities" in the brain, ask which parts of the brain are affected, eg memory, speech, vision etc. Mine was in the area that controls speech and language, located on the very surface (the Dura). As I said previously, it is frightening but be hopeful, it is quite incredible what they can do.

Good luck on Tuesday and will be thinking of you all.

Martin

Hi everyone,

Thank you so much for your last messages, they really mean the world right now. Thank you also for the questions. I’m so grateful.

Well unfortunately today the MRI scan confirmed there are two tumours in the brain, central and temporal lobe frontal I think. So it’s consistent with metastatic cancer and they believe the bowel cancer has spread to the brain. We’ve spoken with the bowel cancer surgeon, tomorrow he will have a colonoscopy and biopsy of the bowel which will tell us more. He said we’d have to treat the brain first with radiation (don’t know yet which type, but hopefully speaking with neurology soon). They will do that first (and they said hopefully appointment is in weeks rather than months) because doing anything with the bowel might create infection meaning that radiation couldn’t go ahead. After that they would treat the bowel cancer with chemotherapy. For now, scans don’t show spread anywhere else but they said that doesn’t mean it mightn’t be there. Daddy asked for time, but they couldn’t say. We’re hoping oncologists will be in touch soon and give dates for treatment. I’m just holding out for some good news, if there ever can be.

Sorry I forgot to answer this before, the way it was affecting him were slight slurred speech and waves of heat around his face. This started 3 weeks ago, he noticed it but it wasn’t until the tremor type seizure that he went to a and e. He was feeling these sensations again so they’ve upped the dosage of steroids. They also were saying that he will be prescribed the ant-epilepsy medicine.

So with this news, is it all about how he responds to the treatment? Should I be asking anything else at this stage?

As always, thank you so much again

Denise

Hi Denise,

I can't think of anything else right now. It seems that they have a plan and yes I expect that things will move quickly with treatment of the brain, that was my experience. Although it is very frightening with the brain I think you will feel more reassured once treatment starts. As I said before the uncertainty of everything can be overwhelming, hang on in there it's quite incredible what they can do.

Thinking of you

Martin