Hello service67,

I am sorry to hear your sister has just been diagnosed with a brain tumour and had it removed 5 days ago. I am pleased that the surgeon says the operation has been successful but it must be a very emotional time for your sister and I am sure she appreciates all your support. You are doing the right thing in avoiding googling as this will only make you feel more worried. We have some information on brain tumour surgery and recovery here which you might be interested in having a look at.

I just wanted to welcome you to our forum and I hope that you will meet others here who have been in a similar situation and that they will be along soon to answer any questions you may have and tell you what the next steps might be. One of our lovely members [@Parmz]‍ was diagnosed with a brain tumour in 2012 and she may be a good person for you to connect with and she might be able to tell you more about what to expect in the coming weeks.

We are all here for you anytime you need to chat and I hope you will hear from others soon and that they will share their story with you. Don't hesitate also to give our nurses a call on this free number 0808 800 4040 if you feel like talking things through with them.

Best wishes,

Lucie, Cancer Chat Moderator

Hi Service67

Sorry to hear about your sister's tumour.

I am almost in the same situation as she is. I got diagnosed with a brain tumour in late October and got operated on early December. I too was told by the surgeron that they removed the whole tumour mass which was in right frontal Lobe. I was recovering well from the surgery but more bad news hit me in 3rd week of December.

The histology reports confirmed it is a Malignant WHO grade 3 tumour . They almost confirmed its a Oligodendro Glioma but more molecular tests are pending to confirm this 100%. I was told I need 6 weeks Radiotherapy and followed by that a round of Chemo depending on the remaining cells.

The malignant tumour cells infiltrated  to near by brain tissues in the tumour location so with these treatments they are trying to kill more malignant cells to stop a new tumour growth.

I'm having an appointment next week to discuss the Radiotherapy treatment plan.

I'm 35 years old Male. The oncologists are positive that the Radiotherapy can give me a good clean up of these malignant cells that are microscopic which is impossible to remove through surgery.

Right now I'm just staying positive to next set of treatments.

Good luck to your sister, keep posted on the type and grade of tumour. Wish her speedy recovery!

Regards

K

Hi there

sorry about your sister

i will keep this short

i used to wake up with headChes every morning and I used to get really bad de ha vue symtomps,this was in 2011 I then ended up in hospital & lied to a nurse that I had passed out at home she told a doctor who asked me to  come in for a cat scan the next day which I did they then did an MRI & transferred me to a day ward where they waited until my parents arrived any way when they came I was 28 at the time they told they had found a growth on the right hand side of my brain

i wS transferred to Charing Cross hospital the same night

where I was put on anti seizure meds  

i had surgery then I did 6 weeks ofradiotheraphy mon tofriday oral chemo for 6 weeks

aftEr testing the cancer they found out it was a grade 3 astrocytoma last Jan 2018 everything started againheadaches de ja ve etc so I phoned my oncologist who told me to come in for a scan so I went a week later they called me back and told me it has come back

since 2012 I was safe my whole world has been turned upside down I celebrated my 2 year wedding anniversary in Oct 2018

the best thing you can do for your sister which I found helped me was I told everyone to treat me normal not to google things and take on day at a time

if u ever to talk I.m here 

We can all beat this horrible disease 

kind regards

parmz xx

Hi Parmz 

Nice to see your post and sorry that your tumour has come back again. But good to see that you are being positive and taking it one day at a time.

As you see in my earlier post, I am waiting for my next set of treatments for my Grade3 Glioma which was operated in December.

So for your new tumour that has come back, is it in the same location as original one? Or different place?

What have the Docs said about your next treatment plan?

Good luck to you and as you said we can fight this only by staying strong !

Regards 

K

Hello K and Parmz ,

Thank you for taking the time for your replies..

It was very bad news on Friday, my sister has a grade 4 gio (I cant remember the last bit, and Im not googling it). She now has radition and chemo starting next week,but this is to limit its growth, as there will be no cure for her. My sister is the sort of person who wears her heart on her sleeve, and I just cant believe its happening to her. I am so devasted for me, our family, and most of all, her.

I cant believe the strength of character you have for going through what you are yourselves, and taking the time to reply.

I wish you both the very best with your recoveries, and thank you.

Nigel 

Hi k

yes it’s back in the same place frontal right lobe; I can.t have any more surgery as it’s so fast growing and the docs have said by the time the operation site heals I will be left with a hole I. My head so we just have to wait until the chemo starts to slow it down. I forgot to mention when I had surgery in feb 2018 my wound started leaking CSF they tried to put a shunt in to drain it away but saw my bone flap was infected so had to cut it out so no I have no bone flap either

can I suggest if you r not scared of heights once you are better do a sky dive I’m so glad I did it before my surgery last year it’s amazing best thing I have ever done. I also plan to go Mexico once better to do shark cage diving with the great white sharks

all the best

parmz x

bloody hell, you dont pull your punches.

I'm emotionally weak, just came out of a depression. I help others on a forum for it, and do a good of it.

This is something beyond me, but take your point about treating my sister normally. Have done so, so far.

Thanks

Hi Service67

Sorry to hear about the GBM diagnosis for your sister. 

When I first heard of my Grade 3, I was shocked, sad and so confused too but every day after that I felt better and i realise the fight is not going to be won in a day or two. It's lifelong and somehow got to find ways to keep the positive energy up and keep moving.

I am now doing more of reading in to the diet side of things as I strongly believe food plays a major role in any health issue be it big or small. It's bizarre the Docs don't give any tips or warning with regards to diet. I am eating a low carb diet for last 1 week and this is after extensive reading in relation to Cancer and healthy food. I'm now  eating mostly Organic fooda and wild or free range meat etc. I will be able to tell if this does any wonders when I start my radiotherapy end of this month and with latest scans they can see the tumour growth.

But for sure, have decided to stay away from Sugar or Carbs. If you get chance look up for Logan Sneed in YouTube who is a GBM cancer survivor and living healthy after 3 years of diagnosis and treatments.

Good luck to your sister. Prayers for her..

Regards

K

Hi Parmz

It's terrible that you are dealing with the recurrence of the old tumour again and I understand it's come back as a higher grade? But you are doing well as far as I can see to cope with it. More than hope I say your Chemo will kill those Cells faster again and you will be  back soon. 

During your remission did you follow any diet or was there any suggestions or precautions given about your lifestyle in terms of eating, exercising etc?

Sorry for lot of questions.

Now coming to Skydive idea, in 2015 I booked a dive in Dubai but could do it for 4 days in a row due to bad weather. My first thought post surgery was to book that again this year and do it if I'm allowed.

The Shark cage thing is so exciting too, I wish you do that once you recover fully.

As mentioned earlier if you get chance look for dieting ideas and let me know your thoughts.

Good luck.

Regards

K

Hi K

in terms of diet I pretty much ate what I wanted but I have looked into the keto diet all about healthy green veg and fruit, my best advice do what you want light exercise is good but listen to your body, if u need to rest you should rest, don’t yourself, 

Listen to the docs but also try and live each day to the max which can be hard,

i also made made a bucket list to keep me motivated so I have stuff to look forward to

tc

parmz xx