Anyone experienced the regrown brain tumor ?

newbie13

really dont know to what to say.

my wife had brain tumor surgery in November-2014, Doctor told us that they all removed the tumor completely. They didnt say anything yet about if the lump is good or bad tumor , She had her first seizure last month ,she was lifted to A&E with an Ambulance . CT test done . After wife discharged from hospital her doctor rang me to say that her tumor is re-growing , my wife need to go in to MR again this week. All my world is collapsed. still no result from Lab about it.

Did anyone experienced this regrowth tumor. ? Are all of them cancer ? Do all of them caused ..... (this word I dont want to write or mention it) ?

betsie

with mine they didn't manage to remove 100% of it but most of it (5 years ago), it did show signs of regrowth on a subsequent scan 2 yrs ago so I had a course of chemo tablets followed by 6 weeks Radiotherapy, no growth since and they feel pretty confident that if anything it will shrink back (fingers crossed). So don't panic too much yet I know you always think the worst but cross one bridge at a time and dont be afraid to ask them questions, my oncology nurse was great so approachable.

newbie13

betsie wrote: »

with mine they didn't manage to remove 100% of it but most of it (5 years ago), it did show signs of regrowth on a subsequent scan 2 yrs ago so I had a course of chemo tablets followed by 6 weeks Radiotherapy, no growth since and they feel pretty confident that if anything it will shrink back (fingers crossed). So don't panic too much yet I know you always think the worst but cross one bridge at a time and dont be afraid to ask them questions, my oncology nurse was great so approachable.

thanks for your post

but, how come it grows back only 40 days after operation? This is what makes me feel bad.

betsie

cant help there unfortunately, I think just call the consultant/nurse and talk it through

K.Flyer

You do need more information from your wife's medical team. First person to call would be the Oncology Nurse. They are the go between for the Surgeon, Radiation and Chemo people and should have all the answers you need, but sometimes you need to push for frank answers.
Some tumours can be quite aggressive while others are a bit slower moving, but unfortunately some of the slow ones can change quickly.
Do you have the full medical name for the type of tumour that it is and have you done any research on it. There are some very good information sites on the Web which can help you understand the different types and their characteristics.

newbie13

K.Flyer wrote: »

You do need more information from your wife's medical team. First person to call would be the Oncology Nurse. They are the go between for the Surgeon, Radiation and Chemo people and should have all the answers you need, but sometimes you need to push for frank answers.
Some tumours can be quite aggressive while others are a bit slower moving, but unfortunately some of the slow ones can change quickly.
Do you have the full medical name for the type of tumour that it is and have you done any research on it. There are some very good information sites on the Web which can help you understand the different types and their characteristics.

we dont have an Oncology Nurse yet, also they havent called or named the tumor . The only thing it is aggressively active regrowing. it is so unusual lump. Her surgeon advised us to start the radio therapy in coming weeks.

K.Flyer

newbie13 wrote: »

we dont have an Oncology Nurse yet, also they havent called or named the tumor . The only thing it is aggressively active regrowing. it is so unusual lump. Her surgeon advised us to start the radio therapy in coming weeks.

Belive me, I know how stressful this can be and you may get answers that you may not like to hear, but you need answers, so don't make phone calls in front of children or maybe best to be on your own.
When the tumour was removed it would have gone to the lab for a histology report to determine the tumour type. They should have had the initial findings back well before now.
Even the MRI scans could have given them an idea which type it is.
Phone the hospital today and ask "... to speak with a member of [Neuro-Surgeon's name] team, preferably the Oncology Nurse..".
They all work together as I said before, so try to get one of them to give you answers.
They may not give you too much information if the person doesn't know you, but if they give you the name of the tumour ask them to spell it out slowly for you as some of them can be right tongue twisters.
Let us know how you get on.

TherapyBoy

If or when, and how quickly a brain tumour regrows after surgery can depend partly or entirely on what type of tumour it is, where it is growing, how lucky/unlucky you are & about a thousand other things. It can be completely random.

I'm 33 now, diagnosed with a craniopharyngioma brain tumour & first had surgery when I was 10. In total I've had brain surgery for tumour removal/debulking & related problems 10 times. The longest gap between surgeries was just over 8 years, the shortest was about 8 months. I had radiotherapy in 1996 & they're talking about doing it again whenever the tumour starts to become a problem again. This type of tumour is benign, not likely to directly cause death by itself & is not cancerous.

I don't mean to frighten you with this story, just to show that tumour regrowth happens but it's not always the end of the road, and that not all of these tumours are cancerous.

When you see or talk to the doctors, ask questions about anything you are not sure of or don't understand. If you find you can't think of any questions to ask when you get in there, write them down together in the days before your appointment. When you're talking with the doctors, especially about a serious subject such as this, it can be easy to drift in-and-out or focus only on certain parts of what they are telling you, or feel overwhelmed by bad news & big words. This is completely normal. Make sure while talking to the doctors that you are not alone, or if you find you can't remember or don't understand what they said, ask if a nurse could join you for the meeting. Having a nurse sit in on doctors appointments with my parents when I was a child always helped them a lot. The nurse was not so easily distracted & was able to guide my parents through what the doctor was saying & they always said in the years afterwards that during the initial shock around the time of my first surgery this helped greatly.

Be positive!

Frito

Hi newbie

Although its a UK site (therefore not completely pertinent) this link might be helpful about what information to ask the medical team.

http://www.cancerresearchuk.org/about-cancer/type/brain-tumour/treatment/what-to-ask-your-doctor-about-brain-tumour-treatment

Good luck, I know how awful it is to watch this happen to someone you love.

newbie13

Frito wrote: »

Hi newbie

Although its a UK site (therefore not completely pertinent) this link might be helpful about what information to ask the medical team.

http://www.cancerresearchuk.org/about-cancer/type/brain-tumour/treatment/what-to-ask-your-doctor-about-brain-tumour-treatment

Good luck, I know how awful it is to watch this happen to someone you love.

Thanks, I`ve seen this website lately,have a nice day

headtheball14

I have experience of a slow growing (mine) and faster growing tumour (family)
Brain Tumour Ireland have support groups in Cork , Galway and Dublin that may be of use
Their contact email is braintumourireland at gmail.com
The most important thing is to find out what type of tumour it is. We were both diagnosed just based on scans so I'm surprised they haven't given and details.

newbie13

unfortunately , it grew back so fast ,she had her second operation last week . Awaiting for radiotherapy appointment in the coming weeks.
She has now shunt in situ for draining fluid that has tumor is producing.