Husbands diagnosis

Hi LittleK83

Awful news without doubt, & I and I feel for you - but I hope this helps in even some small way?

Mine is LT parietal too

Even if it turns out to be grade 3 (as mine is)  I’m almost 8 years in and absolutely fine!!
Fit & healthy as I’ve ever been I’d say & I’m a good deal older than your husband at 63

I’m rubbish with figures now because of the area of my surgery but Big Whoop hey??

Enjoy the tennis & footy tomorrow if you can!!

))) x (((

Li

Hi LittleK83

I'm glad you've found the site and that someone has already answered. Hearing the news you've recently had is an awful and frightening time. Until you know more its human nature to fear the worse.

Until your husband has had either a biopsy or surgery to remove the mass and this has undergone pathology testing to determine exactly what you're dealing with you'll not know what lies ahead, and it may be that your worse fear are a long way from being reality. 

My suggestion would be to prepare for the visit on Wednesday. Make a list of questions and leave spaces next to each one so you can get the pen and paper out when you are there. Jot a note of the answer to each question as you ask them. You think you'll remember everything but in my experience you do not as you are trying to take so much in. And ask for explanations for any terms the doctor uses that you don't understand. 

The fact that he is booked in for surgery on the 22nd is not necessarily a bad indicator. At my appointment the surgeon got his i-pad out and booked me in for the following week. Seeing my startled response he just said his experience to delay was to leave the patient worrying for longer than need be so once the decision for surgery is made its best to get it over and done with. In hindsight he was right, it was better to get the diagnosis done ASAP and know what we were dealing with.

Like your husband I was asymptomatic until I woke up in hospital having had a series of seizures. That was 8 years ago. I've had 2 surgeries and now have epilepsy which is well controlled. 

Feel free to come and ask questions.

Stay strong, for yourself and your family.

Best wishes

Tracy

Thank you for your reply, it’s greatly appreciated.  Today has been a tough and weepy day but trying to stay strong.  I’ve started a list of questions for Wednesday and hope that we can get some answers but appreciate that we won’t know more till some form of biopsy is done.  

can I ask what grade you were diagnosed with? Also with the epilepsy have you had more seizures?

sorry if this is too personal.

kind regards 

kirsty

Thank you for your reply,

It’s good to hear that you are still fit and healthy after many years.

I will keep my fingers crossed that this is the same for my husband.

Enjoy the football

K

Hi LittleK83

No problem with the questions.

I've sent you a friendship request through this site so we should be able to communicate directly.

T

Hi. My dad has been diagnosed with a brain tumour last month after a thunderclap headache. They think it’s either grade 2 or 3 and is due to have surgery after christmas. I’ve been searching this forum to find some hope as everything I read seem to say that life is limited to no more than 2 years after diagnosis. Not knowing much about the type of tumour is really hard. I’m so glad to hear your doing well after 8 years. Can I ask for more information about your experience when you were first diagnosed? 
thank you 

M x

There needs to be a biopsy (microscope and molecular analysis) to determine the type of cancer, which results you will likely receive a few weeks past surgery. The exact type of cancer, the location and the success of surgery will determine going ahead. If it is grade 3 they will ask for radiation and chemo. If it is an oligo and grade 3 they may propose chemo with PCV before radio. Depends a bit on the hospital and on the oncologist and covid (with a covid flare up the do not want you visiting the hospital). If it is grade 2 you may do nothing past surgery. If it is IDH1/2 you may enroll on a trial. There are two/three good groups on facebook with oligo patients and other groups with other types. 

Hey akist

Can I ask if you’re a medic of some kind? I always look out for your informative posts

Most welcome - thanks

Hi Miy,

Don't believe everything that you read about two years left :)

I found that a had a tumour when I woke up in hospital having had a series of seizures. That was way back in 1998. I now just keep taking the pills (Keppra and Lamotrigine) for the epilepsy.

Nothing happened for a few years but then I had a few funny turns and then a grand mals. The tumour had grown and I needed surgery.

Mine is left parietal and grade 3. I'm still going strong after my op in 2010.
After the op I had chemo and radio.

I am hopeless with numbers now. I am a bit dyslexic too. Which is annoying as I used to be an accountant!

All this is just to say that until you know for sure, try not to think of the worst. Easier said than done, I know.

Let us know how things are going.

All the best,
Richard

No, I am just an unlucky patient with no formal medical training. Other than what I read in studies and patient testimonies, what I am being told and hear from doctors. It is amazing how many different opinions you get from visiting different doctors. And talking to patients lets you see how similar/same diseases are treated in other countries, hospitals and doctors. Unlike doctors and other medical professionals, patients have no data protection and integrity rules to follow, and speak openly about their treatments and ordeals. You can learn quite a lot by visiting the right forums.