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I've just been diagnosed with a brain tumour. I have five
children. I am scared. I have no medical insurance. So far I
have received two conflicting diagnoses, one says benign, the
other malignant. I have an MA in Math from Cambridge
University. I'm a single parent. Can anyone offer me any help
at all? I can't even write how I'm feeling, it is so
extraordinary, out of reality...I can't believe this.
in a nightmare
My husband was stunned to see your post because he also was recently
diagnosed with a brain tumor. We also went through the roller coaster of
hearing that it was benign and then malignant over and over until they
finally settled on malignant. UCSF is a public hospital, so if you can
get over there it's the best place for brains on this side of the
country. We're happy to share the information we have. I don't know how
we can help, but you may ask the
moderator for our email address if you'd like to get in touch.
In the nightmare with you...
Have you contacted the National Brain Tumor Foundation? They are
located in San Francisco and they provide information, referral, support
and peers to talk to. Their number is 1-800- 934-CURE or 415-834-9970.
They keep up on the latest treatment options, doctors, etc... I am
hoping they will be a good resource for you. My thoughts are with you!
I am so sorry, it must be so scary. You need to go to UCSF where they
have world class doctors who specialize in brain tumours.
Get a referral from your doctor and make an appointment right away. You
may be eligible for medi-cal, depending on your income. Look in your
blue pages for department of health services and apply for medi-cal.
There is also another insurance for people with preexisting conditions,
called Major Risk through Blue Cross-800-289-6574.If you live in Alameda
County, Highland Hospital is the county hospital where you can get
treatment with no insurance. You also should call the American Cancer
Society. I am a social worker at UCSF, and you can email me with more
Dear Stuggling with Nightmare,
Our family's heart goes out to you. If I were facing such a crisis, I'd
hope for the best and prepare for the worst. For me, that would lining
up my ducks for my kids, making sure that legal guardians were
appointed, making sure they knew what might be coming, making sure their
schools were lined up, and the like. Not sure what ages the kids are,
but instincts are it would be best for them to remain together, and I
would do what was in my power to ensure that they remain intact as a
family. I'd be investigating what social services might be available,
and I'd be doing some deep thinking about the guardianship issue. I'd
also want to set up whatever monies I could for them.
Meanwhile, I'd be in therapy just to get through the day without falling
apart. I'm sure I'd find a support group to help with the anxiety and
distress of the situation (such as Common Weal in Bolinas). Certainly,
you'll need to confirm your diagnosis so you know exactly what you're
Hopefully, you'll have great medical care, everything will turn out
fine, and you'll go on to be their loving parent and anchor for many
years to come.
all best wishes
I have heard that UCSF is doing a new treatment on certain brain tumors.
You may want to contact them as they are state funded and I believe take
I was also diagnosed with a benign brain tumor in 2002. it was benign
but also inoperable. After talking to a lot of doctors I decided to go
to UCSF and get a experimental chemotherapy drug called Temodar. i had
to take it for one year and it shrunk the tumor and hasn't grown since.
The first thing you should do is to contact UCSF and talk to them about
financial aid and how can you see one of the doctors. You also need to
find out if your tumor is operable and what can be done about it, can it
be removed b/c that would be the best thing to do.
Good luck and don't think of this as the end of the world, there is a
light at the end of the tunnel. You just have to find it.
I know you must be utterly terrified, this is an unspeakable thing. Did
one of the doctors do a biopsy? Without that, it is just guessing about
whether the tumor is malignant or not.
Even if it is not, you need to reach out to family, friends,and, if
possible, the kids' father. You will need help to make the necessary
decisions, those decisions need to be made soon, and it will help *you*
to have a plan for your kids.
Lost two to glioblastoma
First let me say I am so sorry to hear that you are going through this.
What a frightening position to be in. I can only imagine how
overwhelmed you are feeling. If I could send a big hug through email...
I think first you need to get another opinion, so you can be a little
more certain what direction this is heading in and what it really means.
I know you don't have any insurance, but I'm sure there are programs out
there that can help you. Hopefully another poster will be able to guide
you in this area. The other important thing to do is take care of
yourself emotionally. Emotional well being is so vital in dealing with
any kind of illness or stress. Learn everything you can about your
diagnosis - knowledge has a certain power and being proactive can give
you the peace of mind that you are doing all you can to deal with the
situation. There are literally hundreds of support systems out there.
Just do a Google search for "dealing with cancer" and you will see. One
website I've found very helpful is:
http://www.cancersupportivecare.com/cope.html. Please look it up.
You need your support system now, to deal with the diagnosis and to make
plans for what comes next. Don't be afraid to ask for help. And don't
be afraid to be specific. If a friend asks if he/she can do anything,
say "Yes, as a matter of fact if you could do some grocery shopping for
me that would give me some free time to (fill in the blank -spend time
with kids, see the doctor, go for a hike, get financials in order).
Here, I'll give you a list." Friends want to help. I will be praying
for you and your family. Please keep us posted on your situation and if
there is anything any of us can do...
-praying for you
I am very sorry to hear about your circumstances. You must be very
scared. I just wanted to let you know that there is such a thing as a
benign brain tumor. My father was diagnosed with a brain tumor about
six months. There were several very scary days, between when it was
seen on the MRI by his regular physician and when he saw the expert
neurologist, that he thought he just needed to get his affairs in order.
It turned out, however, that it is a tumor on the skin(?) of his brain,
that these tumors are relatively common, that they are benign, that
nothing needs to be done unless it grows, and if it grows, it can be
taken out relatively easily. He just had his six-month check, and it
has not grown at all, and they do not even want to see him for another
year. Of course, there are also brain tumors that come with a much
worse diagnosis and prognosis. But my suggestion would be to take it
day by day, until you know exactly what you are dealing with. Also,
find out if you are eligible fof Medi-Cal, and if not, talk to a health
insurance broker about your options.
I am so sorry about your current situation, and I know how scared you
must be. My sister was just diagnosed with a brain tumor, and it can be
very overwhelming. If you can, try to find a support group (through
your doctor or hospital) who can help you navigate through this time.
Also, be sure to bring a friend or family member with you to all of your
appointments to ask questions and remember the answers. My sister found
a lot of good information through an online group of people with tumors
similar to hers. They were able to help her understand the choices she
was being presented with by her medical team and also make suggestions
about what types of questions to ask. It also just helped to hear their
stories and how they got through the difficult time. I don't know what
type of brain tumor they think yours is, but do some searching on the
web to find a group with a similar type who can help you begin to make
sense of your diagnosis. Remember to breathe and take it one day at a
My thoughts and best wishes are with you.
These are the kinds of crises that require a community to pull together,
so I am glad that you have posted here. First, I agree that it is very
important for you to find a good neuro- oncologist in order to get a
clear diagnosis -- benign versus malignant is crucial to find out. I
agree with the recommendations for UCSF, which has one of the country's
top programs in neuro-oncology. You can call their neurology department
and ask how much a single consultation to get a ''second opinion'' would
cost out of pocket, and you can also call their patient finance office
to find out about any possibilities for discounts. The ucsf social
worker who posted may know more about this. If UCSF does not work out,
SFGH is also a great public hospital with excellent medical care and a
very strong neurology program, though their outpatient neurology care is
significantly more hectic/rushed than at UCSF. I know less about
Highland, where the neurology program is less academic/research oriented
-- it wouldn't be my first choice, but perhaps they could refer you out
Of course the other important thing is to pursue insurance, likely
medi-cal -- since the doctors will almost certainly want
more imaging and likely a biopsy as well.
Finally, I hope you have a support system here -- people to help watch
your kids and give you some space to figure this stuff out. If not,
please do not hesitate to ask for help. However this turns out, benign
or malignant, no one should have to go thru such a thing alone.
I will be thinking of you -- good luck with this.
I second all those who encouraged you to take advantage of the support
offers of friends and neighbors. Here's a suggestion of how to do that.
A neighbor of mine had breast cancer last year, and a friend with a
little (not very advanced) computer know-how put together an e-mail
list-serv through yahoo groups for everyone who wanted to help. Through
the list-serv (friends posted for her when she was too sick to post
herself, which was most of the time), my neighbor let people know what
she needed -- what nights she needed meals dropped off for her and the
kids and what she could tolerate (the chemo made her pretty sick), what
days her kids needed playdates or rides to and from school, when she
needed people to drop by and have a cup of tea with her or go with her
to an appointment. She is not a close friend, but I and many other
acquaintances were delighted to have a concrete way to help out.
from her children's schools, neighbors, co-workers, and many other
people volunteered to help in various ways, and because there were a
of us, no one felt that it was overwhelming. If you know someone who
could do this for you, I think it's a great way to tap into the
of people who want to help but don't know exactly what to do.
I too am thinking of you and wishing you well as you struggle through
this. My neighbor, by the way, is now doing well and threw a big party
last summer for all the people who helped her when she was sick.
My wife and I are proud parents of 2 boys, 1 seven years old and the other 7
months old. Both are relatively healthy, neither having any serious medical
conditions/complications at birth. The seven month old is generally considered
very large and healthy by most observers, including his doctor. Unfortunately
his doctor also feels his head is big, too big, and after immunization shots
today he set up an appointment for us with a specialist to examine our son for
potentially having too much brain fluid. The doctor says our son's head is in
good proportion to his body, but when they compare our son's body against
some charts, his head is too large.
We had to have an MRI done on our baby's head and spine when she was about
10 months old. It was done at Alta Imaging where they have a lot of
experience with babies. They had to give her general anesthesia
(oentobarbital) which I was worried about at first but then after the nurse
pointed out that chloral hydrate takes a few minutes to work and might wear
off. If the baby woke up during the procedure we'd have to give her another
dose and the cumulative doses of chloral hydrate would make her very sleepy
longer. With the IV pentobarbital, if she started to stir they could just
push a few mgs into the IV and it worked quickly and they could finish the
procedure plus it is fairly short acting and rapidly cleared by the body.
Baby came through MRI fine and the nurses and technicians there are great.
We sat in the room with the baby and the machine while it was going and
other than the noise it was pretty non-eventful. Hope this is helpful.
If there is a potential problem, by all means get the scan!! Many years ago
I worked with adults who were severely mentally retarded as a result of
hydrocephalis (SP?) which is where the fluid in the skull does not drain,
putting more and more pressure on the brain and causing the skull to become
enormous. I don't know if this is the condition the doctors are concerned
about, but it sounds like it could be. They can treat this condition now,
unlike 40 years ago. Also, as far as skull size Vs. body size: my son has a
very small head and even though he is petite in general, I was told by the
developmental pediatrician that head size should track age independent of
body size. Just my 2 cents. I hope all turns out well!!
my five year old was recently diagnosed with a brain stem tumor. it is inoperable
due to location. can anyone recommend any alternative/holistic modes of treatment
and/or names of centers or practitioners? we are consulting conventional specialists
at ucsf and children's hospital oakland. does anyone know who the top brain stem
tumor specialists are in the country? we are meditating daily to dissolve the tumor.
maybe there are prayer networks out there that we could contact? we are trying to
gather as much information as possible, and any insights are greatly appreciated.
I am so, so sorry to hear of your child's diagnosis. I checked with the Executive
Director of the Helen Wills Neuroscience Institute at UC Berkeley who is a terrific
neurologist, and he recommends the Pediatric Neuro-Oncology group at UCSF. He
says they just might be the best in the world, and that is where he would take his
child if he were in your situation.
As an aside to that, I also have a couple of practical recommendations for you:
Sign up with www.caringbridge.org
There you can make an easy webpage for your child that you can refer people to for
information when you are least able to give it. You can post updates, details on
condition, treatment, etc., and won't have to spell these things out to each person
who asks or whom you want to tell but just don't feel like it. This has been great for
Do your prayers, and enlist others to do them. We do ours every day at Noon, and
asked others to do the same. It has helped me to know how many friends, family
members, etc. want to help at this time when everyone feels so helpless.
My best to you and your family at this most trying time.
I have no recommendation, but I do want to write that our
prayers/wishes are with you and your family.
A family friend had a condition whereby numerous tumors appeared
spontaneously. I don't have the name of the condition, sorry.
Some were inoperable due to location (spine, etc) and after
seeing MANY doctors, he found a Chinese practitioner who with
acupunture and other treatment, has at least halted the onset of
new tumors. I thought of him as soon as I read your post.
The doctor is Dr. Shaolin Ma. (?sp) L.A. based, here's the phone
There's a group in Arkansas that offers a terrific
service--reviewing the medical literature for any condition to
find the most current info, including alternative treatments, and
also identifying the top physicians in the country for that
condition. The link is:
It was formed years ago by a woman who had some kind of cancer
herself. It gets high recommendations in the medical community.
I used it recently for a rather obscure condition and found it
very helpful. The founder was the one who did the research for
my report and she was wonderful on the phone--compassionate,
helpful, kind. It costs around $200-300 for the report but if
cost is a concern they'll reduce the rate or do it for free.
If you're going to Children's and UCSF the odds are you're
probably already getting the best possible care, but there just
may be something new or experimental that they can find for you,
or another physician expert to consult. I have a 5-yr-old boy
and can only imagine what you must be going through. My heart
goes out to you. Best of luck in your search.
Hi Everyone -
My brother's best friend has just been diagnosed with brain
cancer and he needs surgery. Can anyone recommend a surgeon, as
well as any advice on how to help this guy?
I don't know about specific neurosurgeons for adults but here are
some excellent web resources for information about brain tumors:
http://www.virtualtrials.com/ (go here first)
http://www.brainlife.org (an ''academic'' oriented site)
Each of the above sites has plenty of links to other sites. UCSF
is one of the premier brain tumor treatment centers. If you need
a pediatric neurosurgeon look no further than Dr. Peter Sun at
Children's Hospital of Oakland.
I am so sorry to hear that this is happening to a loved one. My husband was
diagnosed with a b.t. just last August. I am happy to talk with you or your
brother or his friend about our experiences and what I have learned, which is
quite a lot.
As for your question about a surgeon, where does your friend live? If he is
nearby, UCSF is definitely the place to go. They are one of the foremost ''brain
centers'' in the U.S. Their surgeons, namely Dr. Berger and Dr. MacDermott (my
husband's surgeon), are reputed to be some of the most aggressive surgeons,
meaning if it can be got out, they'll get it out. In our case, the tumor was not
resectable and the craniotomy was useful only for the biopsy it yielded. That
said, they will also review potential ''side effects'' of resection (removal) with the
patient and allow the patiend to decide which risks they are willing to take for
The other two brain centers I would consider are Dr. Keith Black at Cedar Sinai
in Los Angeles, and Dr. Friedman at Duke.
I recommend the book PRESCRIPTION FOR NATURAL HEALING for their section
on preparing for and recovering from surgery. I wish we'd used it, but only
came across it later.
All the best to you and to your friend in
dealing with all that lies before you.
My brain tumor was removed 3 1/2 years ago by Dr. Mitchell
Berger at UCSF. He was a complete godsend. He is not only an
amazingly gifted surgeon, but a true healer. I had complete
confidence in his aggressive approach to removing the entire
tumor. I live fully to tell the tale.
I'd be more than happy to lend support. Take care.
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