Braintumor Support Group Survey

Explain how online support groups and/or websites have helped you deal with brain tumors.

We found treatments that we would not have found otherwise - resulted in over 8 years of extended survival after being told nothing was available and patient would die in weeks.
By sharing information with others going through the same thing, listening to their stories and what treatments have failed or succeeded for them.
People with similar experiences sharing info. Have learning from others experience and able to share my experience.
I allowed me to overcome the doom and gloom statistics found online and given by the doctors. They also allow me to plan for future treatments and to have more confidence in what the doctor's plan is. They also help you feel not so alone because many people do not understand the challenges facing brain tumor patients b/c they often look "normal."
The online support groups that I joined after my Mom was diagnosed with GBM have been a lifeline for me--mentally and emotionally. The groups are available at any time of day or night, which is very important with a busy and erratic schedule of balancing work and family life.
By knowing what treatments others are getting, I can feel more comfortable that the treatment plan prescribed by my doctor is current and mainstream.
Helps me to understand terminology, learned from experiences of others, helps me know what questions to ask, provides support with people in similar situation, the information and experiences on different protocols allows me to have meaningful participation in treatment decisions, different perspectives honored
Invaluable information. Gave me information, Could hear how others dealt with BTs, what their experiences were with all aspects including treatments, meds, emotional life, logistics, doctors, BT centers etc. Advice on BT centers and Drs.- could find out how people liked their doctors. Lots of emotional and practical advice and support. Some scientific help with articles, websites, journal abstracts.
Preparedness for all the possibilities. Dissolves some of the uncertainty. We are not alone. Broader knowledge of treatments and side effects. Motivates involvement in raising awareness and funds.
Interaction with others on the same path is supportive and educational.
Forthright answers to very blunt questions from other people going through it. The medical community is too concerned about gathering data for their trials to consider my son as a person rather than a number. My online support family has been the ONLY ones who care about my son and our family.
They have been an excellent source of information, direction, and support.
Better abale to understand the disease and its progressin. Able to help me talk with my sister about treatments I am seeing diuscssed and people' reactions to them. A place where I can relate to the people going through similar things.
Meeting other families dealing with same issues, have same questuions, also health professionals offering counsel and advice.Very warm and helpful.
Learn a minimal from Specialist's in person but Research same & more possible effective treatments.
people with similiar situation have experienced same problems - access to drugs in US better than Australia so more information
Online support groups help validate my emotions. It is a place to go where people understand what you are facing. They are a place to discuss options with people that have been through similar or same experiences.They help investigate all possibilites for treatments.
They provide a forum to exchange ideas and experiences. Pubmed has been extremely useful in formulating a treatment plan.
provide DETAILS that the real world omits. What to expect in the next stages. More on day to day living and how to cope. More understanding. How to deal with insurance, filing for disability, how to get more help for homecare, more caring. Too many physicians are hardened and afraid to get involved because of the ending.
The support group referred me to the Friedman doctors at Duke (Henry and Allan) and we chose to go there for the second surgery. Duke was more successful at getting ALL of the tumor, doing an awake craniotomy and going deeper into the speech area without any permanent damage. Dr. Henry Friedman does EMAIL - usually answering your notes within a single day and sometimes within minutes from his Blackberry now. That is just incredible and VERY stress relieving when you are upset or confused or worried.
To find out how real people have dealt with problems, not just read someones take on what might help
Better understanding and help to build confidence.
I don't think he would still be alive or in such good health if not for the information & guidance I've found in these groups. Personally, I feel the support & understanding of the BT community has been what keeps me sane & optomistic.
information has heped me modify my treatment plan, particularly in regard to supplements and 'off-label' medications.also good to hear other peoples' experiences.
very informative, explaining, instructive, source of new ideas and things to research and follow-up
we live in Canada so we are about 20y behind the U.S. in research. Being part of the online support group has given me information on other treatments that are being used and access to more current information. Our NS does not seem to have any of the current information on what the top U.S. hospitals are using and everything suggested is dismissed as "not scientifically proven"
as an education tool to keep informed about the disease, treatments, results.
feeling of "we are not alone" !Someone is there to support u and share positive info with u........
It has given me the opportunity to speak to people who are travelling the same journey as ourselves, rather than just doctors who can go home at the end of the day. It's also educated me about the various treatments available throughout the world.
I have become more knowledgeable and better able to understand the whole picture of the brain tumor journey
Knowing we were not alone in this, provided good info on side effects and treatment options, felt like we were in the know about all choices available. Personal support for my decisons were reinforced by the group whichwere very helpful
I have gained a lot of knowledge in alternative treatment options. I have gained a lot of knowledge about conventional treatment options I have found additional resources from the bt lists I have been able to share with my husband issues related to his that others have posted I have been able to give my husband hope from survivor stories I have been able to give my husband a better quality of life by following up on supplements mentioned on lists I have been able to share my knowledge with others in my community with newly diagnosed bts, although I am not aware that any have followed up on information I have given them.
It's helped to manage my expectations of what to expect during various treatments and now that my mom is facing hospice care.
It is helpful to know I am not alone in this journey. Also, helpful to hear about the experiences of patients who are further along in the journey than I am. People are very supportive and willing to help, and that is great. The only negative part is that you become attached to patients who ultimately die, and that's painful...it can cause me to be a little "down" for a while, but the benefits far outweigh the disadvantages.
Two main ways: 1. knowledge of treatment approaches at major brain tumor treatment centers around the USA (and world) 2. knowledge (both scientific and hearsay) concerning alternative treatments using herbs/vitamins and over the counter pharmaceuticals.
They helped me learn that the statistics are only an average and that patients can live past these time periods.
connection on, and affirmation of, issues I deal with
Dr. Musella is my hero & I love it when he posts. I have gathered sooooo much info from this forum - knowledge is strength & power. Without this info we would have had to go into this journey blindly.
Support groups (real and online) help me to feel less isolated. They give me an opportunity to learn from those who are farther along in this journey than I am... and I also get the chance to provide support and compassion for others... it's nice to be able to "give back" a little! I've also benefited from suggestions made by other patients and have received guidance on the types of questions I should be asking my doctors.
just thinking about partipating in one, but have not yet
make better, more information decisions; formulate better questions to ask doctors; enabled me to offer doctors some suggestions for alternatives; empowered me to be an a more equal footing with doctors and their staff when discussing care and options; provide a sounding board
N/A
When I was initially diagnosed, the online support group was my ONLY form of support and inofmation. Since I have a brain stem tumor, my local doctor were clueless about my treatment plan and prognosis. Honestly don't think I could have made it through the first few weeks/months without this groups support.
Support Group - Helped find a medication that we used off label to stop my son throwing up daily for the first 4 1/2 years (2 1/2 years off treatment). This was from a parent that had experienced similar symptoms in her son. From website - was able to obtain more information about a chemotherapy drug, one of two suggested at my son's relapse with Medulloblastoma, we chose the 2nd of the doctor's choice based on information we obtained and he remains tumor free since 5/2001 :-)!!!!
It gives me someone to talk to that understands what I am feeling and dealing with as a caregiver. I also learn alot of new information regarding clinical trials etc.
It makes us aware of how the 'road' goes - it also shows us most of what we are going through it part of the deal - whether we like it or not. If we have a question it is nice to be able to ask those who are going thru the same thing - it may possibly be a question someone may also find useful answers to.
It is important to distinguish between the two. Websites like those provided by organizations like the NIH, Brain Trust etc. provide generally reliable information. I look at the NIH site for information on clinical trials, for example. "Private-citizen" websites have to be taken more carefully. I find that these almost invariably express the bias of the owner/author. I am very leery of sites that offer information for sale. I also take most of what I read in online groups very carefully. These are open forums for discussion and it is up to the consumer to separate the useful from the bad. Finally, gone through two brain tumors. During my treatment for my first, in 2002, I found groups like the MIT-hosted BRAINTMR very helpful, primarily because there was a lot of patient participation. Now, since my recurrence in Nov. 2006 to the present, I find these groups, most particularly the Yahoo! group brain-temozolomide, to be very caregiver-oriented now. That isn't bad in itself, but not particularly helpful for patients.
There is a rich collection on various of topics. For Brain butor treatment, I rely on professional online resources (PubMed, Clinicaltrials.gov, etc.)
Even though I am silent, I have been a member since early 2006 and find it helpful to hear that I AM NOT ALONE!
The online groups are a wonderful resource. It's sometimes difficult to immerse myself in the pain that comes through the emails, but this is our reality so we must live in it and through it. The messages of survivors and hope is always welcome.
Online support groups offer personal experiences with specific hospitals, doctors, and treatments so that you can better evaluate your current treatment plan as well as prepare for future treatments. They also help you deal with the lonliness or dispair that comes with the diagnosis of this terrible disease. You truly realize that you are never alone and that is amazing at 3 am! So much accumulated knowledge with a group this large as well as a wonderful, caring group of people truly here to help anyone who needs it.
It's like an intensive course that brought me up to speed on what to watch out for with neuro symtoms, what options we might have, what questions to ask, how valuable it is to seek other opinions, how helpful alternative treatments can be. My husband (patient) does not participate, but I inform him of everything I find out that can help us. Oneline support group posted strong recommendations for other practitioners who we could consult with. One is a neurosurgeon/oncologist at another NYC hospital. The other is a nutritionist expert in bt patients. Both recommendations were GREAT and they became important members of our health care team. It's been one year since diagnosis, and we never heard of the names of these 2 other practitioners anywhere else outside the support group. Imagine if I didn't join? This is not particular to my husband's case, but everyone's - Our main NO obviously has many patients to treat and think about. She cannot possibly spend the time we need answering our questions, mulling over possibilities. She is bound to patient privacy and cannot share her other patient's experiences and what worked and didn't work. So, the support group online is INVALUABLE to learn about other patients and take away what might work for us today, file away what might work later on. And it feels really good to be able to help others by sharing our experiences and decisions.
Mainly research and sharing of tx / trial info.
When I was first diagnosed I was seeking information and the websites were very helpful in finding and sorting out information. I found the online sites helpful but only participated a little. I learned a lot from reading other peoples postings and questions.
Became aware of different treatment options
mainly learning new trials and venting complaints
meeting people who are going throught the same problems. Caregivers and BT patients have insights that Drs. cannot provide
Information about symptoms, side effects of chemo and other meds. Ecourages advocacy for patient. Encourages venting.
Information, consideration, methods of understanding, a sense of not being alone, and understanding have definitely helped me deal w/my son's illness. Virtual Trials has definitely contributed on a professional level, and I believe is a postitive experience for people lucky enough to have found it. Being an active member, it is nice to not be alone with this disease.
Helped me see I am not alone. I live in a rural area and attend a cancer support group meeting monthly, but I am the only BT survivor there.
Would feel very lonely otherwise as I'm based in the UK and there's no online support group for cranios here. Also was good to realise it's not a death sentence.
Found information about the disease found best treatment facilities, and places for second opinions searched clinical trials, used Pubmed to review research and clinical trial results
Access to information taht would be impossible to find by oneself in a limited time and a stressful situation. By tha support of discssing issues with people in similar situation.
sharing feelings openly without risk of hurting nthose you love, getting a wide variety of responses from others travelling the same road
As a caregiver, it was helpful to hear what other caregivers were going through. Also helpful to hear what treatments other people were getting and what helped them.
My friend who is a resident in the nursing home where I work has felt she's benefited by hearing about other people and how they are getting along after surgeries, etc. She likes knowing there are "others out there."
learn about other treatment options, how others have coped with situatioins
My husbands tumor was diagnosed, treated, etc. in 1989. I was totally lost and alone until finding an online group of other BT families, caregivers, etc. That was in 1998 and I truly feel it saved my life. At least my sanity. There is no place on earth where you will find others who actually "get it". This beast is like no other cancer. people look and say, "oh he looks great, he's all cured now, right?"
The online group has been most important as a source of personal support for me. Like many spouses of people with brain tumors, I often feel very alone as though no one else has ever struggled with what I am going through. The support group for spouses changed that. Especially at the time that I discovered it, it really changed my life. It especially helped me recognize some of the subtle changes in my husband's personality. I almost thought I was imagining things until I heard of others with the same or similar experiences.
information on diet, emotional support guidance and how to face life in such situation and also educated on symptoms despite treatment help me cope with my husbands deterioration with great strength and help me face life and facts more boldly.
It gives some hope
I find the survivor stories encouraging
Because this is the 17 anniversary of her Diagnosis, I did not deal extensively with online support groups. I did find information about her tumor on trusted websites, ie Harvard, Mass. General, etc.
acceptance
Supplies much needed medical information; I am not alone with some of the problems I have and get other opinions & suggestions; Can vent to others who get it and in turn listen to them also and give support; share much humor as this is needed to overcome (sometimes) over whelming problems facing myself and family; get the latest updates involving medical break throughs, insurances, gov't. involvements and coverages.
Good source of up to date info on treatments around the country/world;good to hear from people who are in "the same boat" Re: what works for them,etc.;good for emotional support too if needed; I get specific info Re: GBM tumor treatment whereas our local cancer support group is for family members and patients with any kind of cancer ( I like the "real world" group for the emotional support)
They have provided information, comfort and support. I don't feel as alone, and that helps enormously. The information I received from the listserv in the beginning made a huge difference in our getting Phil's craniotomy done at UCSF rather than the local hospital, and it provided us with a nutritionist (Jeanne Wallace). So it has been remarkably helpful to us.
i go looking for information but cannot take it all in as i also have frontal lobe tramatic brain injury
it has helped me feel connected with other patients and carers. I don't feel so alone in helping my spouse deal with his tumour
everyone's experiences helped me deal with my husband's condition and gave me many ideas on things to try that our own doctors never mentioned...particularly with day to day care......also websites explained in more details things that the doctors talked about
Help to better understand what to expect, provides support for dealing with stress
have not used.
musella and oligo lists. provide insights into what is happening to others. Also, gets most up to date info on new therapies, results, testing sites, doctors, etc.
N/A
Lots of information with what to expect from treatment.
Getting information from google alerts.....for certain key words....
sharing information and support, knowing there are others with the same burden, pointing to treatment options, getting info on side effects or how different treatments have worked for others.
Initially, in 2001, I did participate in online support groups, but found them too depressing. Most of the chat was about someone who had died.
I have not used them for information.
n/a
Both supportive and informational, I would recommend them.
My mother was diagnosed on a Monday. That night, I began researching, mostly on .gov and .edu websites. Her neurosurgeon listened to everything I said, and it made me feel much better knowing that the information I had read was almost exactly the same as what he had to tell us. I feel he took us both more seriously because we were informed and knew what questions to ask. Finding out about the trial she ended up in BEFORE surgery was very reassuring.
Made me feel more in control/informed
Belong to a number of support groups at this time after 30+ years of dealing with an ill husband long before diagnosis. The support groups let me know I am not alone.
My online support group has helped me by giving me a resource unlike any other. Straight from the horses mouth is the term I like to use. Our brain tumor is rare so even our doctors don't know alot about it but our support group is based on our tumor and my friends there are the true experts.
Helps be know that I am not alone and also helps me get ideas of what to expect in my husband's behavior. Great help with drug side effects as far as what to watch for.
I was going online to learn a little bit more about the disease and also wanted to know what to expect from other caregivers/survivors that were experiencing the same treatment my husband was going thru. I also would give my experience and feedback.
The biggest help has been finding people who have the same illness since it is so rare.
Virtual Trials lets me view video conferences and the latest medical treatment for GBM.
During my treatment when I was in denial and unable to talk to anyone I went online and actually found a man who had the same diagnosis and not so promising news like myself and he was still around and fighting the tumor with the same grade 3 diagnosis as myself and I only spoke with him once but that information that he gave me helped me to fight and now it is almost 5 years for myself as well. I wish that I could find him again to see how he is and to thank him for how he has helped me without even knowing that he gave me hope and fight that I didn't believe I could beat the odds.
I have discussed chemotherapy options I've learned about from support groups or web sites with my neuro oncologist. I have learned which drugs might be appropriate for my condition, how they affect my quality of life, and side efects. I have shared this information along with my condition and treatments with the support groups.
na
Just knowing that I'm not alone is comforting. They are people who will listen and are willing to share experiences and treatments.
There is a great deal of understanding and knowledge coming from the people that have been there. Everyone can identify with each others feelings, frustrations and levels of pain or deficits that no one else can. They can also be so educational in explaining their own treatments, responses, emotions etc. I have always been the type of person that "needs to know". This is a disease that doesn't allow me that luxury, so I cling onto every shred of information that I can get, good or bad. Somethimes I contribute and sometimes I just lurk, but I always get something out of it. When I need to reach out, someone is always there ready to help.
I facilitate both online and in person support groups, so I am probably biased
Online support groups can be a wonderful way to discover updated information, as well as finding out about treatment options that are available in different geographical areas.
comparison between more advanced use of temozolomide in USA and most of Europe and mean minded and primative/ill informed use in UK
Online groups, present an statistical average of answers, reactions, side effects, worries, pains, etc, etc, that Brain Tumor people are subjected to.
keep up with the latest developments
It's wonderfully reassuring to hear that other BT folks have problems similar to mine. Also, it's a great place to just vent, so that I don't burn out my real world friends and family. Finally, my tumor, a subependymoma, is so rare that I'd never find a real world group with other subependy patients.
For me as a parent, not the patient it is a valuable tool to see how other patients and caregivers deal with their changes in their lives and it's also encouraging to know there's always somebody ready and willing to listen
have helped by the fact that they can be bigger, making them more realistic than real world supp grps. one is aalways limited by the experiences of tne members.
I'm not the only person dealing with this. Members share their experiences and it has helped ALOT!
I don't use online support groups. I go to a place where everyone has some form of cancer. It is a very supportive group. I also have never talked to my Doctor about different treatments I was being treated by Duke University in North Carolina. My sister is a nurse so I received alot of my information through her speaking to Duke.
They have been very informative insightful and supportive
I've only used the Have a Chance/Virtual Trial site. It has made me feel like I'm not the only brain tumor survivor. I haven't done much online, except participate in the walk.
helped me to understand I was not alone. Kept me up to date on treatment plans.
Helped me to know what to expect.
Knowing that there is a group of people who know EXACTLY how I feel is incredibly helpful. Espeically since there are caregivers in the group as well as patients. Since this tumor is so rare (ependymoma) it is really important for me to find as many patients with it to find their experiences because our doctor, at a major cancer center, has only treated 5 patients with recurrent ependymoma.
Groups have helped in ensuring appropriate treatment decisions, obtaining general education regarding brain tumors, obtaining medication information (dosages, side effects, alternatives), evaluating chemotherapy and radiation options, gaining emotional support, evaluating MRI and pathology results, and many other ways. The groups are invaluable resources.
I was told that my type of tumor was most common in men and that it was not treatable with chemotherapy. I was surprised to find the number of women with this tumor and how many in total had been treated with chemotherapy. Knowing the commonalities and differences of people in my situation; I found to be quite informative.
They expand your knowledge. You have the benefit of learning from like sources which is especially critical for ependymomas because they are rare and it is hard to get up-to-date information. The emotional support is priceless; only those who go through this know wht it is really like; lots of ramifications.
I have found other caregivers that can relate to my own experiences. I draw strength from their experiences.
Makes me realize that we're not alone on this journey. Also able to compare our symptoms, treatment options, side effects with others. Feel that we're more educated when we speak to the doctors & can ask more intelligent questions.
Listening to others traveling this journey, validates the way I feel. Joyous news makes my day. Sharing sad times makes me grateful for all I have.
Provides me with info about others' reactions to treatments, impacts of treatments. Also provides me with info about clinical trials and new treatment options that might be more difficult to find without a medical degree.
Pretty much everything I know I have learned online from websites and support groups. I have posed questions to the support group and have read many informative articles about GBM online. Also, it is helpful to correspond with people that are dealing with the same thing.
I have the good fortune to have had few deficits or serious side effects from my treatments and am cancer free and have been six years. The websites have been helpful in giving me optimism if the cancer ever returned. More importantly, it has given me an opportunity to help others going through the trauma of GBM.
The members helped me on making decisions and considering other possibilities
Emotional support & understanding, information treatment, expectation level for treatment by a doctor/hospital/care center, help through the whole overwhelming process.
Able to talk with people who understand thed stresses in caring for a BT patient
It has been nice to "meet" others with the same rare diagnosis to learn what they have tried in terms of treatment and how they have coped.
Establishment of friendships with people who understand my problems much better because they've been there!!
new member
i visit yasg and yahoo groups for info on gbm and other peoples treatments etc. its a doubled edged sword. sharing hope...but so much saddness, no 1 seems to beat gbm. i talk on phone w/2 others w/gbm, i met via yasg.
Helped me realize that there is hope to live longer than what you hear from the doctor. Also that there are things to look for or be aware that might happen during treatment or when between treatments. The doctors we see do not tell us anything more than what they have too.
Well i read a lot of websites about brain tumor, and always wanted to find a solution to the tumor, because the medicine does not promise more than surgery for this type of tumor (gliosarcoma), so i tried always finding alternative ways for the treatment.
Meningioma Mommas Board. Only people with m's are allowed on the boards and we talk about our issues, concerns and treatment options. We offer and receive support to and from one another that helps bolster our spirits and offers HOPE.
to be able to speak with others in same situation,to be able to share how treatments change bloodcounts,sickness levels etc.To be able to talk when not able to sleep through worry. To get up to date information re treatments.They have been very helpful
I have not been in contact with any groups. I am now post op and did not know about any help groups. q 41 I did answer welcomes it. but really do not know as it was never discused,
helps to find others whom have dealt with similar issues
When my husband was diagnosed and operated on (all in same weekend, we had no warning and then he was operated on), his sister read lots of information from a brain tumor listserve. It has helped save my husband's life, I truly believe, because we found Dr. Henry Friedman at Duke Med Ctr, and Jeanne Wallace, Ph.D. in nutrition (www.nutritional-solutions.net) and he follows a very healthy diet and takes supplements that help support cancer patients. He's doing great, seven and a half years out!
Help me talk with people who really undersand what my family is going through. It helped me keep my sanity. Thanks.
I obtain more information verses when even as a R.N. I question my Husband's Specialist's for Information. After all this time & after many requests, still waiting for Summary Notes & MRI with Contrast Written Reports; Still Nothing!!
Found dr Kelly at NYU who operated on my tumor after other surgeons said it was inoperable.
Helps us with decisions about new treatments and trials and also very useful for supplement info. i.e., vitamins and herbs.
factual information on treatment options
It has helped me to understand the problem, and to learn about treatments that may be needed in the future as well as current treatments. It is a great resourse of information.
They provide updated information. The online support group helps in addition by knowing that others have or are going through it right now and the tips and advice and place to vent are invaluable. It has saved my sanity at times. I also get a good feeling helping with advice and support to the newcomers who are going through what I have already gone through.
My wife does not want to deal with the wealth of information that is involved in attempting to decide a course of action. Some websites have helped in clinical direction of our dealings.
Have helped mostly from an education standpoint
Voice to be heard. New stuff out there. Second ideas about same things. Very inspirational. Keeps me in the loop. Laugh at crazy ideas. Support what I already know to be true. Share journey.
We are not alone, we are able to gather strength from the struggles and benefits of others. We are able to gather "real" information from those going through what we are going through, and we get hope from the others.
Have learned a great deal about BTs. Unfortunatly there is not enough valid information anywhere in the world today that is giving me a great deal of hope of a cure being found for this terrible affliction anytime in the near future.
They validate my feelings and help me research other options.
I have learned so much about caring for my husband from real people going through the same situations. It offers me information on situations I need advice on, or future considerations I may have to make as a care provider. I get very informative answers to my questions due to the fact that the people I am asking has been through the same thing. They are able to tell me my options, I otherwise would not know about, to present to my husband's doctors and nurses. I certainly don't get many options from them. I feel their suggestions are either biased, or just ignorant of any other alternatives. I, in turn, am able to offer suggestions based on my experience to others in the online community. The online community is also a great comforter during these times because they offer emotional support as well, and that is something you will not get at the doctor's office. I feel we are able to make better, more educated decisions when our emotional needs are met, something you will not get at the doctor's office.
I run one, which I consider "fighting back."
Information is power. Always looking out for he latest treatments and clinical trials being offered.
Enabled me. I didnt feel so alone. Was able to learn from others experience. Was able to take steps ahead of changes because everyone shared experience on disease progression. Developed many friends who "get it" and was able to vent frustration about the "real" world and how cruel it can be.
I seem to use them more for information and just "listening." I plan on becoming more involved,
Educating myself has made me feel more in control and I have a clue what is going on with my husband.
Other in the on line support group they get what you are going through.
Improved my education of brain tumors and helped with my own morale.
KNOWLEDGE, HOPE AND KNOWING YOUR NOT ALONE
seeing that we are not alone and not completely crazy seeing what others are going through seeing symptoms from others proceeding with caution on the subjects posted by people
It's nice to know I'm not the only one w/ this, but, it's disheartening to find few in my age bracket
websites....give helpful understanding information..what to expect, etc.
While my husband died three weeks ago, I have fully maintained throughout our two-and-a-half-year struggle that he would have not done as well as he did for as long as he did without the ongoing exchange of information through the Braintemozolomide, THE Brain Trust, and the Caregiver online support groups. They became a lifeline for me, as a caregiver, and for him, as a patient. They are part of our family and are our closest friends.
My wife is on three online support groups. She has provided me with information she obtains on those groups. They have been tremendously helpful through her. For example, when all of this started, it was information from the btcaregivers that helped me to choose UCSF as a place for surgery and treatment rather than being treated locally. I'm so glad for that.
They explain somehow the reality of the situation and when you now what are you dealing with it becomes somewhat easy to prepare yourself. everytime my mom has breakdowns I know what I have to do (relatively) or what to expect. They inform you and open your eyes.
Great peer experiences, treatments, side effects, outcomes. Helps with insurance navagation. Experiences with Doctors and tumor centers. All positive - all the time.
I don't visit on line support groups or website. I only am involved in a real life support group, share experience with other members and my doctor (at times.) He is pretty aloof about online support groups, articles, internet. He feels there is a lot of misleading information and the patient can misunderstand what is being said
Just gives me an extra place to talk about things.
I tried following the Yahoo group, but it seemed too depressing. So many deaths. Also, they often discuss alternative treatments. I am biased toward medically tested treatments.
Confirmation of doctor information.
To feel that you are not alone. Ideas for alternative treatments.
I have read success stories. This is what gets me through this knowing there are successes and people living many years
There have been people with the rea issue able to spent the time to help me with my questions
I have not been in any support groop's
It has helped to know that others have the same symptoms, the same outcomings, they are dealing with the same things as me. I'm not alone.
he doctor doesn't always provide enough information, so it is helpful to have somewhere else to go.
found information I could not find anywhere else. By information I mean experience of ppl.
lets me know that i am not the onlyone dealing with these matters
It is good to see how others are dealing with the actual use of the drugs/treatments my son is having. Also it is helpful to see the statistics can be wrong!
I have not used online support groups but have gone to the Brain Tumor websites frequently during and after my diagnosis. It was extremely comforting to access these resources as I, like most people, knew nothing about brain tumors until the day I was diagnosed!
I should have joined a support group six years ago. I am going to start looking for to join. I have no family. My spouses family is/has been in total denial
Provides more information -primarily on survivors and their responses to treatments and institutions; secondarily on treatments per se.
It just feels really good to know there are other people out there that I can relate to, in good times and bad. Since a large part of the brain tumor list is made up of caregivers, and it is simply me with the brain tumor, sometimes I just have to look away because the tears are coming to my eyes, knowing that I may be facing that too.
provide awealth of information and experience one would otherwise be isolated from
It is very helpful and informative it gives patients hope where sometimes the doctors don't.
Can find out more from online easily Drs do not always know the answers to questions.
support from other people
People at the BRAINTMR group us very supporting and helps answer questions I have.
I've only been at this for a couple months. So far it's been most helpful in realizing I'm not alone.
Knowledge is power and power is comfort. Despite the sad stories that are amidst the encouragement, there is always help. It also helped to hear about other side effects and ways to avoid them, etc.

Brain Tumor Support Group Survey

Explain how online support groups and/or websites have helped you deal with brain tumors.