Biopsy Results are IN

k · New User Joined: 27 Nov 2007 Posts: 7

One week ago today I found out that my SO has a brain tumor. He is at home alone for two more days while I am working long hours at the office. First biopsy is scheduled for two days from now. I am having a terrible time coping with being away but trying to keep my job at the same time.

Does anyone have any sugestions for coping day to day?

Does anyone have any advise or tips for the initial biopsy procedure? What should we expect after biopsy?

I hope someone writes back.

Angie205 · New User Joined: 25 Nov 2007 Posts: 6 Location: Wisconsin

Coping can be so tough. For us it is my Mom and she has an MRI next week. I fear the worst.

Most of our news came very fast, as in within hours of onset of symptoms. The only coping suggestions I have are to be in the moment. As you move forward try to stay in whatever moment is happening. Stay in the day. You can't control tomorrow or next week, but you can control what you do or say today.

This disease is so big with so many details and side effects. If you can try to focus one day at a time, it does ease the weight of it all. It also helps your loved one feel your love and caring. If you live each day together, they can be in the moment of the day more easily as well.

I hope this helps a little. Just know you aren't alone out there and we all have been or will be in your shoes.

Take care,

Angie

ksplat · Posted: Tue Nov 27, 2007 6:44 pm Post subject: Re: coping and waiting for biopsy

Hi K
Welcome to the forum. This is a great place for support, information, a most importantly an outlet for you with your current HUGE concerns regarding your loved one.
When my Bro had his biopsy we were told almost straight away what kind of brain cancer as the surgeon knew from experience that it was a GBMIV. They will take a piece of tumour & either have a pathologist on hand to test immediately or will send it to pathology. I'm sure you will find out quickly. The waiting will be the hardest thing & with you working it's probably not such a bad thing. At least you have a diversion from your worrying thoughts. Coping on a daily basis will be difficult & I can only suggest you try to keep busy with unrelated matters (like work, also try some exercise like walking or cycling). Are you into meditation? This is also a good release for stress!
It's hard to predict what happens after biopsy because there are different kinds of brain cancers & different treatments.
Are you going to be with SO(???) for the biopsy surgery? You will need support after dx.
We are a great community of either cancer sufferers, survivors & carers & loved ones. Make sure you keep us informed after biopsy, I pray for the best possible outcome for your loved one & you.
This forum has been a blessing to me since I learned of my Bro's GBMIV. Lots of support & comfort here.
God Bless, Aussie Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman · Posted: Wed Nov 28, 2007 4:26 am Post subject: Re: Biopsy Results are IN

k, I am very sorry that you "SO" has a brain tumor. (By the way, what does "SO" stand for?)

Depending on the exact location of the tumor, a brain biopsy can be very easy on the patient with hardly any pain and a fast recovery time. Did they tell you any specifics about it? : How large it it, where it is located, etc?

Right now you are going through possibly the worst time of your life. It is hard to cope with the unknown. What kind of support network to you have around you? I know that when I was first diagnosed my family and my friends rallied around me. They did the same when it recurred 13 years later.

When you are ready, you can read my story by clicking on the link in my signature block. Also, know that we are all here to help support and inform you as best we can.

You and your loved one are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

k · New User Joined: 27 Nov 2007 Posts: 7

SO = significant other

I am so glad some people wrote back. For some reason that alone makes me feel better. We are going in today for MRI in preparation of biopsy tomorrow. I hope that we recieve results shortly after biopsy. Not that there could be any sort of good news in a thing such as this, but if there is we are hoping for it. His confusion is getting worse and worse just day-to-day. He can't remember his phone number, the year, the month, his address, and lots of words get mixed up. Not that it is funny at all ------- but he has been calling the vacuum cleaner the "jack rabbit". Yesterday he asked me to feed the jackrabbit. So, it seems to be getting worse and worse. I just want to get him some help the best I can.

Thank you to everyone who responded.

brainman · Posted: Wed Nov 28, 2007 5:54 pm Post subject: Re: Biopsy Results are IN

Duuuh

. Sorry for not guessing that SO means significant other to begin with.

I know how I feel when people reply to me... my world is not as empty as I thought. There are others fighting the same fight with me. I am not alone. That in itself is a source of comfort to me.

I am so sorry that your SO's condition is getting worse day-by-day. His biopsy is tomorrow, Thursday? I will be thinking about and praying for him. Keep us informed. Make sure you get the following information when it becomes available:

1. Cell type
2. Grade and/or Stage
3. Size
4. Specific location

All of these will influence the decision about treatments that are available to you SO and his prognosis. Make sure that his medical team know about your SO's mental status deterioration prior to the biopsy. They will need to have that in order to tell if the biopsy itself is causing a mental status change.

Best wishes.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

k · New User Joined: 27 Nov 2007 Posts: 7

well we have a diagnosis
glioplastoma grade IV
everyone is upset
SO is drinking in garage
19 year old son is working overtime on purpose
13 year old son is spending as much time with friends as possible

brainman · Posted: Mon Dec 03, 2007 9:17 pm Post subject: Re: Biopsy Results are IN

k, I am so sorry about your SO's diagnosis Sad

. I know that your family must still be reeling because of it. I am sure you are aware of how bad a GBM can be. My mother died due to one over nine years ago, two months after her diagnosis. But she was 73 and opted for no treatment. Have they talked to you and your SO about treatment options?

I continue to hold you and your SO in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

In · Posted: Tue Dec 04, 2007 5:16 am Post subject: Re: Biopsy Results are IN

K, I'm really sadden by your news.

I have been following your and SO story, and was hoping for something else to be diagnosed.

Men and boys will deal with it the way they know. Let things cool down and settle a bit. Give yourself time to accept and take in what has happened. Then maybe organise dinner, and get it out. Say this is what is happening..... I feel this......, how do you feel.....? OR just say what are we going to do about this? Get it all out in the open. The boys are going to grow up really quick, and you and your partner need them and their suport , as they need you.

Fight this all together, don't keep them in the cold- let them help, think this through- make them apart of this. They are already- even if you don't know it yet. This will help them feel like they have some control and might bring you all togther.....

Just my idea.. Embarassed

Thinking of you, let us know how things are going..
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
~Car Accident- Broken Back, Ribs, Spleen
Sternum~
~Continous Cervical Cancer~

My Story-
http://cancerforums.net/viewtopic.php?t=6731

Smile

9 Lives and still kicking Smile

jenugl · Posted: Tue Dec 04, 2007 7:19 am Post subject: Re: Biopsy Results are IN

Hi K, I'm so sorry to hear of your SO diagnosis. 19 months ago I was in exactly the same situation as you. My partner was diagnosed with GBMIV and opted for surgery straight up (no biopsy) they removed all of the tumour. Then he went on to have 6 weeks of radio and chemo and then 6mths of chemo. He is still tumour free and going great. All tumours are different even when they have the same name as it depends on where it is and how big it is and how well treatment is handled by the individual. My thoughts are with you all as you go through this terrible time in your lifes. I know the turmoil that you are going through and I only wish that you didn't have to go through it. Stay strong, but allow yourself to cry and grieve. Try and get in touch with a counselor as I know personally how helpful they can be. For the first 2 weeks I probably managed a couple of hours sleep as we spent this time in different hospitals and I felt like I would never get out of the nightmare. Your emotions will be all over the place, but just remember that we are here for you. It is a great place for support, information and to get things of your chest. My thoughts, love and prayers are with you and your family. love Jen.
_________________
Love to all. Jen.
_____________________________

Partner of GBMIV survivor - so far.

http://cancerforums.net/viewtopic.php?t=9502

k · New User Joined: 27 Nov 2007 Posts: 7

I didn't give all details I guess
it is about the size of a walnut, they will not operate
he starts radiation and chemo on thursday
he is not suposed to drive, but is still doing it, which makes me extremely angry, I remind him how badly he would feel if he hurt someone else
he is just not thinking, that is why it is hard to go to work
the doctor said he won't be able to speak much more clearly than he can right now, they are just trying to further any more growth or damage
3 months to a year with treatment is what the doctor told us to expect
he has a BAD attitude that i just can't seem to pull him out of

i don't know how i am going to get him in for treatments everyday for 6 weeks, but I am trying to make arangements with some of his friends

major problem in that he really doesn't want his friends to see him like this and it is hard for him to communicate making even more embarassing to him

the little guy was in trouble at school yesterday for fighting, he said the kids won't stop asking him about his dad, he doesn't really want to talk to them about it with them

SO is so down, this morning before I left for work he said he was going to clean the clothes out of his closet and take them to Goodwill

I told him not to do that or he will be awfully cold the rest of this winter

THANK YOU to everyone who has written to this post

I feel like I am beside myself, with no time for even a hair cut, LOL

BUT IF, ANYONE has any suggestions of how to pull this 47 year old guy out of the dumps, I am open ears
THANK YOU

ksplat · Posted: Tue Dec 04, 2007 10:03 am Post subject: Re: more info

Hi K
Sorry to hear about the GBMIV with your Husband. Where is it placed in his head? Are they not operating now because the tumour is small or have you been told it's inoperable. I guess the Drs are planning to shrink the tumour with chemo & radiation.
My Bro was told initially that his tumour was inoperable (because it was on his brainstem) but they have debulked the tumour twice already since May this year.
My Bro's tumour was only .5mm at diagnosis. These buggers grow real quick though. My Bro went through the anger & frustration too, he was determined to fight it & overcame his grief with the determination to face the treatment HEAD ON! I'm sure your SO will get over his current depression & be reenergised to face this illness head on too. With the support of his family. You must keep at him with your positive energy (even when these times are so tough). I pray he will have only a short period of darkness/self pity & he can quickly get on top of his illness & get into the treatment.
My thoughts & prayers are with you all.
Cheers, Aussie Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman · Posted: Tue Dec 04, 2007 10:26 am Post subject: Re: Biopsy Results are IN

k, my heart is breaking for you and your SO Crying or Very sad

. I can identify with him so much. It is very hard to adjust to the reality of having any cancer much less a GBMIV and being told that even with treatment you probably will not live for more than a year.

It is also hard to give up driving. It is so difficult for some of us to ask for help. The three times that the doctors told me not to drive for a 6 month period were very stressful on me and my family because I too wanted to drive.

Sunday I went to church but felt so uncomfortable because of my speech deficit. I can still speak, but I stutter... some days are worse than others. Sunday was a bad day. After church, I did not mingle with friends the way I usually do because I was so embarrassed answering, or trying to answer, the same questions over and over. It does start to wear a person down. I am not sure what you mean by a "bad attitude" but it sounds like he is still trying to grasp what is happening to him.

You do need to report this change in behavior to his medical team. They are in a better position to assess his needs than anyone on this forum or on the Internet. Your SO may be depressed and his medical team can prescribe an anti-depressant for him. I have had to be on anti-depressants at various times within the last 15 years.

I would venture to guess that he will not be able to work much during his chemotherapy. Can you take a medical leave of absence from your work in order to be with your SO? I think he will need you beside him.

Taking his clothes to the Goodwill may be a little premature. However, think about what he is really doing... setting this in order so that you will not have to after he has died. THAT is a very loving thing for him to do for you. My advice is to use that rather than trying to stop it. Just guide him to more appropriate things like:

make sure his will is up-to-date

make sure he has a Living Will or Durable Power of Attorney that names you as his Heath Care Surrogate

make sure you know what his wishes are in terms of extraordinary means of life support

do the things that he still would like to do with whatever time he has left

tape or write messages for you and your family

and, yes, at least organize his things

My father died over a year ago and left me his collection of pictures, slides, and scrapbooks... hundreds if not thousands of pictures. Dad did not do a very good job of identifying who, what, when, where on these so I am totally clueless. I wish he had take the time to walk me through them so I could have taken notes. Maybe there is something like that your SO could do WITH you.

Also, other than your SO, what support system to YOU have? You will need people to be with you during these next several months.

Try to find ways to bring joy into your lives. This may not be easy at this point. However, try to make each moment count.

I continue to hold you and your SO in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

k · New User Joined: 27 Nov 2007 Posts: 7

I don't think we have months left
I think we have weeks
got a phone call from doctor at 9:00pm
he said the tumor has doubled in size since we were first there just before thanksgiving
it is now about the size of 2golf balls
doc can not believe that he is walking or talking at all
but he is, he walks to the garage to drink
i have people checking on him while i am at work
he is not suposed to drive
i parked a pickup behind his truck and took out the fuse so it won't start
there was about 3 feet between the two trucks, his truck was in the garage
he got out today somehow, and drove around town doing errands
i am doing my best to prevent this
but it is not easy to take away previlages, and seems smart and able enough to get out

i think we will be lucky to make it through next week according to what I am being told

i am worried and scared

Noid · Experienced user Joined: 16 Oct 2007 Posts: 57

Wow..so sorry to hear things are going so bad for you. I sure hope the radiation helps. I'm in the same boat as you s.o., except for me, they are waiting and hoping mine dosent' grow so fast, as mine is slow growing.

Try not to get so down..i've seen people recover from some horrible things before, even worse than cancer...you'd be amazed. Just keep hope. Don't give up just yet.

I'll keep you in my prayers.

Noid.

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