NEWBIE - MY STORY (or should I say novel?)

aprylpauline · New User Joined: 23 Apr 2008 Posts: 8

I have been reading some of the stories on here since yesterday and felt compelled to share mine.

In mid October I started to get a small headache everyday, and everyday it got progressively worse. I went to the doctor and she told me that it was because I had quit smoking 5 weeks before that. She prescribed Tylenol 2's and off I went thinking nothing of it. The Tylenol did not ease my headaches even a little bit. So I went back to her and she decided that I was having migraines, she gave me migraine medication, they did nothing for my headaches. I again went back and she said she would book a CT scan, by this time it was November and the headaches were awful to the point where I could not even stand hardly. Oh, I also went to the eye doctor who told me that headaches should go away after a good nights sleep, thanks, mine didn't.

One morning I woke up with a headache that went from the back of my head to the top and down the muscles in my neck, and I had nausea. I knew something was wrong so I went to the clinic where I saw a wonderful doctor who was actually the head of trauma at my local Hospital. He brought me in for the CT (a month earlier than my original appointment from my own doc). It turned out that I had a rather large (6cmx6cm) in my right frontal lobe. My brain was so swollen you couldn't even see those two squiggly lines on either side. What are those called anyway? So onto the dexamethasone (whole story in itself really) and admitted to the H for 5 days prior to surgery. I had my surgery and my Neurosurgeon successfully removed 98% of the mass. Then came the radiation and Temodal. I am still taking the temodal and I expect to make a full recovery and am extremly positive about my life. I have read a lot of survivor stories and I expect to be one of them. I'm very happy to have found this site, and I am thankful to have people to share this with who truly understand. And I am grateful that you all took the time to read this. Bless.

ksplat

Hello Aprylpauline

Thankyou for sharing your story. It was uplifting to read of your positive attitude & approach to this awful illness.

We too are happy you have found this forum & will look forward hearing more from you.

You are in my prayers & thoughts, all the best.

Cheers, Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

aprylpauline · New User Joined: 23 Apr 2008 Posts: 8

I had my first MRI after surgery and radiation 11 days ago. I am told that it could take up to 3-4 weeks for the results. I live in Canada and when I asked why patients in the states usually get their results back within the same day or week, I was told that it is because there is an MRI on every corner there. Confused

It is very difficult to wait for these results, but I guess it is good news that they haven't contacted me with any bad news by now.

Mama 2 2

Hello Aprylpauline!

Welcome to this forum - I posted a reply to your post on the Canadian brain tumour association board and I'm glad you found this site too. I'm wondering what part of Canada you are from? We live just outside of Vancouver, BC and go to the cancer agency in Vancouver.

When this whole thing started for us, we would wait roughly 2 weeks for MRI results, and it was always just a phone call telling us everything was ok. The waiting sucked, but our surgeon was so sure he 'got the whole thing' and pretty much told us we would not have to deal with this again aside from MRI's (which would eventually be years apart), so we didn't worry too much. This went on for 3 1/2 yrs, at which point we found out it had returned - not a fun time let me tell you - they phoned and all they would say is he needed to come meet with the surgeon . . . we knew something was wrong. The really crappy thing was he was home alone as I had gone to Calgary to visit my best friend so couldn't be together for a few days upon hearing the news (though I was ready to fly home that minute, he insisted I stay).

After his second surgery and radiation, the scans remained at 6 month intervals, but from then on we would meet with the radiation oncologist immediately following the MRI, which is still the case to this day, though since it has come back once again we are now at 3 month intervals for MRI's.

Because we started off like you, I'm wondering if maybe the timing of the scan results depend on the state of the individual - perhaps when the tumour shows re-growth they decide to have immediate results?? Who knows. . . . . I do know when they first suspected a possible tumour (from a cat scan following a seizure), someone from the MRI department called to go through a medical questionnaire with him prior to him being scheduled, but they told us that he would likely have to wait 6 weeks for a scan. He was in the next day.

There are certainly flaws in our system, but we have found that when we have needed the care, it's been there for us. He did have to wait almost two weeks following his last seizure in Sept for the MRI, but we were all pretty sure that it was because the bloody thing had come back (his last scan 3 mos prior had shown what we were told was possible tumour growth, but possible scar tissue). We knew there was no need to rush in this case, with the exception that I was overdue with our second baby and couldn't make the trip with him (though I wanted to, everyone made me stay home . . . she ended up being born 3 days before the scan).

A 3-4 week wait does sound pretty long though . . . I wouldn't think it's in direct relation to how many machines there are, because it's about reading the results. Was it your doc who told you that??? Well, I hope you find some comfort in this site - I know I have - and your positive attitude is infectious, and will likely provide some solace to others. I think you have a long way to go before you write novels as long as mine though Embarassed

Take care
~C~
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

Aimster · Regular Joined: 03 Jan 2008 Posts: 35 Location: Nebraska

Hello Aprylpauline,
Thank you for sharing your story with us too am a bit confused about Smile

Hope that you will be getting wonderful MRI results soon! Waiting is very hard, even for a few days.

I wanted to chime in with Mama 2 2, that your positive attitude is a gift you are bringing to all of us here on the forum. I look forward to getting to know you better and hearing all about your full recovery - and getting to tell you all about mine Very Happy

_________________
Amy (39)
*presumptive low-grade glioma in right frontal lobe (first observed Aug. 2007; diagnosed Jan. 2008)
*watching & waiting, but anticipating resection in the next year or so

http://cancerforums.net/viewtopic.php?p=28526

aprylpauline · New User Joined: 23 Apr 2008 Posts: 8

Mama 2 2 - Thanks for the heads up on this site.
I live in Windsor Ontario. It sounds like I am starting out pretty much the same as you and your husband (I'm assuming you are talking about your husband) as my MRI's will be every 6 months as well. I still haven't heard anything from the doctor yet. He told me that he would just be calling me to give me the results and I asked if he could just see me breifly after each MRI instead because I knew that if I got a call from him saying to come in instead of hearing him say that my results came back clean, I would freak out. He agreed. What type of tumour did your husband get diagnosed with? You mentioned that he had surgery and radiation the second time, did he have any radiation after the first surgery? I also have found that when push comes to shove, the system is not that bad, it's just the disease that sucks!
Aimster - thanks for the well wishes on my MRI, I know that it will come back clean, I can just feel it. I guess that is why I haven't been too discouraged waiting for the results. As for the positive attitude, there is no other option. Why should we all let this disease get the best of us?! It has already taken something from us but we don't have to let it take everything. It is not the destination that is important, it's the journey. No one ever knows when their time is up, if we all did, we would walk around like a bunch of cry babies!!!!!
Keep smiling Very Happy

aprylpauline · New User Joined: 23 Apr 2008 Posts: 8

I just got my results for my MRI, they said it is "stable". Can anyone tell me what they mean by this? I feel like they rushed me off the phone. Mad

Mama 2 2

Hi Aprylpauline,

I would think 'stable' would be a good thing Very Happy

. I know for us stable meant that the tumour had not shown any growth, and since I believe you mentioned that your surgery removed 98% of the tumour, this means that you should still have only about the 2% kicking around. Since they rushed you off the phone though, you may want to call and insist on a further explanation to be sure - and also because they just should make sure your questions are all answered. It's the LEAST they can do.

As to your other questions on my info - yes it is my hubby Elias who has the tumour . . . . you can read my whole novel on the link at the end of my posts, but it is an oligoastrocytoma, grade 2. They didn't do anything after the first surgery except the 6 month MRI's. The surgeon was convinced he got the 'whole thing' and told us we would likely never have to deal with it again aside from the MRI's, which would eventually be 5yrs or more apart. HA. It was the radiation onc who told us that is typically never the case with primary brain tumours.

It is my understanding from others on this forum that radiation is a one time deal as the brain can't take too much of it without the possibility of problems. Fortunately, he had no problems from the radiation - but we were told it should slow the inevitable regrowth to 10-15yrs, but it was back in 1 1/2yrs. A very small regrowth, aparently, but enough to cause a seizure. Also, they tried radiation first because my hubby's tumour does not have the 1p/19q deletion that makes the tumour more responsive to chemo, so they thought radiation would have a higher chance to work. We have managed to stay really positive through most of this whole thing, but I must admit to being totally freaked out waiting for the first MRI after he started chemo because even our neuro onc didn't sound too optimistic for the chemo to work, but it did!

It's so true what you said about the positive attitude though - what else are you going to do??? You have to live each day and in a wierd way this rotten disease does help give you perspective on what's really important in life.
_________________
~Life's too sweet to be bitter~

Our Story: http://www.cancerforums.net/about7982.html

brainman

aprylpauline, let me first tell you that "stable" is wonderful news.

"Stable" is not a very specific term usually used with family and friends when they phone a hospital or doctor's office asking for information about someone. Basically, it means that nothing has changed... no decrease in size nor increase in size. For most cancers, this is probably not too good to hear. But for a glioma, it is grate to hear that the tumor is stable because more often than not the news is that the tumor has grown. So, I rejoice with you.

You 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/

justAdad · New User Joined: 21 Aug 2007 Posts: 8

Hi aprylpauline,
May I suggest that you keep a notebook nearby at all times. Sometimes you will think of a question or wonder about something that you would like to ask your Doctor. Jot it down in the notebook so you can remember to ask them.

Also, when they give you info write it down as they explain it to you. Don't be ashamed about stopping them and asking them to repeat anything you didn't understand. Ask them to spell unfamiliar terms so you can look it up later if you want. Some doctors tend to blow through explanations, but don't let them. You need to know what is going on, what they think about it and what they intend to do.

"Stable" is indeed a good term. Since the surgeon removed 98% of the mass stable may mean that there is no visible tumor material and no changes. But to be sure, you should ask. In fact if you have questions call the doctor now! It is their job. Ask him/her exactly what kind of tumor it was. Ask them what "stable" means.

My thoughts and prayers are with you.

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