Brain tumors

[jayeff]

This really is only written for two people, but I don't know how else to ensure they both see it. I had invited NC to contact me, but he didn't and later I noticed Smokey also has a brain tumor. One of my (step) daughters went through this treatment a few years ago, and I thought it might be helpful to know what to expect, particularly when it comes to deciding on the sort of questions you might want to ask your own doctors. My experience may not be typical but I found the doctors to be almost reluctant to talk in layman's terms and the process turned out to be nothing like we we led to believe (or wanted to believe) it would be like.

Initially the patient is diagnosed as having a brain tumor and at this point, that is all the doctor knows for certain. The seriousness of the situation depends on a number of things:

1. Is the tumor malignant? They can only know that it definitely is malignant (ie spreading) if the scan/x-ray shows an artifact with tendrils extending from the surface. If the exterior of the tumor is smooth, there is an excellent chance it is benign.
2. However, while malignant tumors are usually the most potentially dangerous, the present size and above all the location of benign tumors can make them dangerous too. Obviously in and around the brain are many nerve paths and a tumor can press on these nerves, effectively rendering them useless, as it grows.

Usually, after a tumor has been identified, the patient will meet in a matter of days with the team that - at this point - is going to be responsible for further treatment. Initially such treatment will almost always begin with "traditional" surgery to remove as much of the tumor as possible, although gamma knife surgery is sometimes a preferred option.

Depending on whether or not any of the patient's normal functions are already being affected, that operation may be scheduled for any time within the next 3 months or so. The doctors may give an estimate as to the operation's chance of success, but they are giving you that based on statistics. The success of your operation depends upon:

1. Whether the tumor is malignant or benign, because it is much harder to remove all traces of a tumor which has already begun to spread.
2. The location of the tumor, because if it is close to, possibly even wrapped around, critical nerves, in most circumstances they will not risk damaging those nerves and - in effect - doing the same damage the tumor itself would have done. From experience, doctors can guess, but until the operation itself is under way, not know for sure exactly what they will find in this context.

If there is even a slight possibility that any of the tumor was left behind, after 3-6 months (this depends on the extent of the initial operation and the healing time involved) the patient will be offered radiation and/or chemotherapy. Usually, because the effects on young children can be more severe, radiation therapy is avoided.

At this stage the doctors have post-op scans of anything which remained of the original tumor. Over the coming months (and periodically even after the patient gets an all clear) the patient will be re-scanned for signs that the tumor is growing. That is what will determine what further treatment is given and how often (if at all) it needs to be repeated.

If a lot of the tumor was left behind and it does show signs of rapid growth, benign or malignant, gamma knife surgery or even further traditional surgery, are possibilities.

---

Because of the treatments which are available, brain tumors in general should be feared much less than our emotive reaction to the words suggest. But apart from the potential seriousness in some cases, I wouldn't wish this condition on anyone.

A tumor is easy to see on the scans: your doctor may well show it to you. But until the operation itself they cannot be totally sure what they are dealing with. And even afterwards when they know exactly how much they were able to remove, they cannot know how anything left behind is going to behave.

So one of the worst aspects of this condition is the uncertainty you may have to endure for anything up to 2+ years unless every step produces the best result possible. That is something we discovered later, is very common in brain tumor cases, but at odds with the fairly optimistic messages the doctors tended to deliver.

What can also be crippling, is the cost. In the US that can run to around a half million dollars if the case isn't straightforward. The patient (and if a child, one or more parents) will be going in for treatment or tests at regular intervals. Most of these are in and out on the same day. Some can last for two days. The operation itself could involve 5-10 days of hospital time, start to finish.

For children in particular, they are sources of financial help. St Judes research hospital in Georgia is a wonderful hospital who work totally for free. But there are also research hospitals which will take adult patients. One key however, is to go this route before you have any treatment at all. It is fine to have the original consult and discover how urgent your case is considered to be. But while you are waiting for the first treatment is the time to think about your finances and whether you may need assisted treatment. It is much harder to be accepted into a research program after your treatment has begun.

I learned that when pressed, particularly early on when they are largely guessing what they will find later, doctors may play down what the patient is facing. My best advice would be to stay hopeful, but not allow yourself to become convinced that everything is going to be fixed at once. Do that and even routine treatment leading to a good outcome is likely to push you into depression. Be optimistic of course, but also try to be realistic about how long it can be (probably at least a year, even if things go well) before you are likely to know for certain that all is likely to be well.

Useful links:
http://www.usnews.com/usnews/health/...ls/tophosp.htm
http://www.stjude.org/brain-tumors/0..._18782,00.html
http://www.cancer.gov/cancertopics/f...ial-assistance

[squishypimp]

thanks for the info

[jayeff]

One thing I should have mentioned is that even if you have insurance, make sure you know exactly what is covered, whether there is a cap, etc. Because of the potential total cost involved, you may still need to find manageable but fairly large sums of money out of your own pocket.

One other thing I learned was that if all else fails, some hospitals are fairly easy to deal with regarding payment plans: even for sums much larger than those for which you might normally seek credit. If you have gone the other routes without success, it does not hurt to ask.

[=^..^=]

I used to work in a hospital and I had an opportunity to work with a guy who was the former head of the Cacner treamtnet clinic in Melbourne...

one thing he told me which realy stuck in my head is this:

that in most cases cutting a tumor out is only a temporary treatment... the studies they did at that hopsital showed the people who reovered successfully where the ones who GAVE UP the following:

alcohol
cigaretes
tea/cofee
eating meat.

obviously NC's boy doesn't do the first three but you may seriously like to look at switching samuel to a vegetarian diet.
Most people think this means eating a bit of lettuce and some beans.. far from it - theres lots of great meat replacement foods to eat.. and if you would like some recipes icq me 380-366

actually:

HERE's AN OFFER:
since NC is in montreal and I'm only an hour away..
I know that having a sick child means you don't get much done...
if you like, sometime in the next week (before i leave to live in Miami) I will personally come over and cook a big hearty vegetarian dinner for you guys if you would like.

Sometimes little things that seem trivial can mean a lot in a time of hardship.

[jayeff]

PS: if anyone reading this is in direct contact with Nocarrier or Smokey The Bear, please let them know this thread exists. It would be pointless to bounce it, since it's only of peripheral interest (if that) to others. But those two might find it helpful...

[=^..^=]

Originally Posted by jayeff

PS: if anyone reading this is in direct contact with Nocarrier or Smokey The Bear, please let them know this thread exists. It would be pointless to bounce it, since it's only of peripheral interest (if that) to others. But those two might find it helpful...

you'd be suprised the number of ppl who post here that have had/do have/ have family members with a tumor or various cancer- majority of them dont bring it here tho

[Holly]

Originally Posted by jayeff

Because of the treatments which are available, brain tumors in general should be feared much less than our emotive reaction to the words suggest.

I totally disagree. In general, a brain tumor diagnosis is one of the worst you can get, especially when 60% of all new tumors end up being the glial type. The prognosis is very grim. And the treatment outcomes haven't really changed much in the last 20-30 years.

Also, no one I knew waited 3-6 months for radiation. You could be dead in that time. It started as soon as the scalp was healed after the resection. If there was no resection, then it was immediate. Even in the kids who were old enough. And the chemo was immediate, too.

But you are dead on about the costs. Even if he's covered, there will be a lot of other expenses down the road. I've avoided posting any of that because I don't think this is the time. If you've done this, then you know what I mean.

St. Jude is in TN, not GA. I will admit, I still hope he decides to take him there.

btw- what type of tumor did your daughter have?

[PuffSex]

Thank good I have liver tumor

[NoCarrier]

Originally Posted by jayeff

Useful links:
http://www.usnews.com/usnews/health/...ls/tophosp.htm
http://www.stjude.org/brain-tumors/0..._18782,00.html
http://www.cancer.gov/cancertopics/f...ial-assistance

Thanks for the links and information jayeff! Sorry, I didn't notice any invitations..

[Holly]

Originally Posted by NoCarrier

Thanks for the links and information jayeff! Sorry, I didn't notice any invitations..

How is he feeling today? He's not still vomiting, is he? That's due to the pressure that builds up inside his skull, from the swelling caused by the tumor. They really should be able to alleviate most of that by giving him some steroids (decadron). If they're not mentioning it, I would ask. He will feel so much better.

[NoCarrier]

Originally Posted by Holly

How is he feeling today? He's not still vomiting, is he? That's due to the pressure that builds up inside his skull, from the swelling caused by the tumor. They really should be able to alleviate most of that by giving him some steroids (decadron). If they're not mentioning it, I would ask. He will feel so much better.

I think I bookmarked everything about brain tumors on the internet, I went to sleep at 4 am last night. It was not a good idea. Yes, he still has headaches, but we give him codeine syrup, it helps him a lot during the night, he can sleep. So far it's the first usual symptoms, vomiting and headaches. We caught it early.

[Holly]

Originally Posted by NoCarrier

I think I bookmarked everything about brain tumors on the internet, I went to sleep at 4 am last night. It was not a good idea. Yes, he still has headaches, but we give him codeine syrup, it helps him a lot during the night, he can sleep. So far it's the first usual symptoms, vomiting and headaches. We caught it early.

Seriously, he needs a steroid. The codeine is just for pain. The steroid will actually reduce the swelling that's causing him the pain, especially when he first wakes up in the morning, which is when it's usually the worst. Call his doctor and ask about it. Insist that they prescribe him one.

I hope he feels better soon.

[Dirty F]

Originally Posted by squishypimp

thanks for the info

Its pretty fucked up that you even sigwhore in these kind of threads man. If this was my board you would be banned ages ago.

Fucking retard.

[NoCarrier]

Originally Posted by Holly

Seriously, he needs a steroid. The codeine is just for pain. The steroid will actually reduce the swelling that's causing him the pain, especially when he first wakes up in the morning, which is when it's usually the worst. Call his doctor and ask about it. Insist that they prescribe him one.

I hope he feels better soon.

He's currently taking more scanner tests right now in Montreal.. I was supposed to go with my wife, but will all the drama about the radio station stuff, I decided to stay. I have to take of my 7 year old daughter anyway she's home with me right now.. I'm gonna call her and ask her about the steroid treatment. Thanks!

[squishypimp]

Originally Posted by Franck

Its pretty fucked up that you even sigwhore in these kind of threads man. If this was my board you would be banned ages ago.

Fucking retard.

what is the problem, the man provided info and i was being nice and thanking him for the obvious effort he placed on writing that post for the community here at GFY.

stop the hate Franck, i see no one else including yourself thanking him for his time to post that for the community.

[jayeff]

Originally Posted by Holly

St. Jude is in TN, not GA. I will admit, I still hope he decides to take him there.

My apologies... I don't know why I mentioned the state and didn't simply say Memphis. As to the rest, I'm not going to argue with you since I was talking from experience, not opinion, and we went through this less than 4 years ago at the Barnes Jewish Hospital in St Louis (children's hospital and then the adult one). BJH is ranked in the top 10 hospitals in the country, so I doubt their treatment was very different from what most others are likely to offer.

I was deliberately avoiding specifics (such as mentioning steroids), because that is like second guessing whoever is treating the child. I have no pretensions of medical knowledge and no wish to confuse those involved further. I do know however - and the St Judes website confirms this - that glioma is a generic term, therefore you cannot draw many conclusions from its use.

My intent was solely, in the very limited way anyone can, to try to smooth out the emotional roller coaster a little for someone who is affected by this condition.

[Holly]

Originally Posted by jayeff

As to the rest, I'm not going to argue with you since I was talking from experience, not opinion, and we went through this less than 4 years ago at the Barnes Jewish Hospital in St Louis (children's hospital and then the adult one). BJH is ranked in the top 10 hospitals in the country, so I doubt their treatment was very different from what most others are likely to offer.

I'm sorry if that made you mad, that wasn't my intent. For the record, I am speaking from personal experience also, as I just spent the last 14 months of my life taking care of my father, who died from a glioma type tumor. I moved in with him the day we found out and I never spent a night away from him until he passed. This included flying all over the country to various hospitals for clinical trials, including scorpion venom, IL 13, Gleevec, Hydroxyurea, Carboplatin, Avastin, etc., and dealing with Henry Friedman at Duke. I'm also one of the facilitators in the bt support group here, and he received his radiation with a little boy with a brain stem glioma.

While I don't agree on the waiting 6 months to start radiation or chemo, since I know that is not standard protocol anywhere we dealt with, I'm sure things change and maybe that's why it's different. I was very interested to read your post and I was mainly wondering what type of tumor your daughter had. If it's too personal to share, I understand.

[sharp]

Originally Posted by squishypimp

what is the problem, the man provided info and i was being nice and thanking him for the obvious effort he placed on writing that post for the community here at GFY.

stop the hate Franck, i see no one else including yourself thanking him for his time to post that for the community.

Your post was 1 minute later. You didn't read it.

now back on topic.

[scottybuzz]

one thing the internet has helped with is medical information. and how most stuff can be found in USA. before... who knows.

[budz]

great post, that was very thoughtful of you

[SmokeyTheBear]

hey thanks jayeff someone else pointed me to the thread.. very informative. i learned a few things.. great thread

[iamkathi]

My first husband died of a glioblastoma in 1990. He had been diagnosed in 1984 and lived longer than any of the others in the study he was in. He lost his sence of taste and smell after the first resection and developed a tremendous sence of humor.

My prayers are with you. Read everything you can and make the doctors talk to you in plain english and make you understand. I was notorious for " Let me just ask you one more thing.." And I talked to all of the nurses and the family members for comfort and information.

There are others here that have been through similar illnesses and can offer support or give you questions for your doctors.

Please let us know what we can do to help you and your family through this terrible time.