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! jlevin
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 questions. monica
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 dealing with. 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 all patients. anon
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. Christine
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. Anon
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 time.
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 to UCSF.
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. Emily
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. Parents from her children's schools, neighbors, co-workers, and many other people volunteered to help in various ways, and because there were a lot 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 goodwill 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. villager
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. Jonathan
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. Cindy
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!! Anonymous
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 my family.
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. elizabeth
I have no recommendation, but I do want to write that our prayers/wishes are with you and your family. chris
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 number: 310-352-1880. Good luck.
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: http://www.thehealthresource.com/
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. Kathy
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? Thank you. Shirley
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://hope.abta.org http://www.cancer.gov/cancerinfo/wyntk/brain 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. anonymous
Shirley, 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 themselves.
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. bandita
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.