New website for brain tumor patients/family

[docsbydocs]

Hello to everyone on this forum. I am a neuro-oncologist, and I have started a new website called docsbydocs.com. I am the director of a neuro-oncology clinic for a large medical center in California. I started this website, mainly because I wanted patients and family members to have a place to go for up to date information about brain and spine tumors. Forums like this are a great way for patients and family to connect, but I have noticed medically-based content online needed improvement. Hence, I created docsbydocs.com. We are specialists in neuro-oncology who write articles on topics related to brain and spine tumors. We also take requests to write articles on topics by registered users. The site is completely free. We can be reached at <link deleted as per policy...please read our policies and comply> on Twitter @docsbydocs, and via email at <link deleted> We hope our site can help you get the information you may be seeking. Thanks!

[ChemoMan]

Hi

It would be nice for you to show some courtesy and ask permission before posting links which may be of benefit to our members. In your message try to provide proof that you are indeed legitimate.

I have not issued infractions or banned you at this point. further link violation will result in a ban.

Thank you

[docsbydocs]

Sorry about that. I'm really just trying to help. I am a neuro-oncologist and I do see people every day in clinic to help them deal with a really difficult situation. Would it be okay to post about my site on your forum? If you want to clear my site, that's fine with me. I know the internet can be a crazy place, but it's the best way to disseminate good information for people who need it. Thanks.

[GBMsibling]

You're a neuro-oncologist? Hey, I think you guys are great!

Your website looks like a good start. It seems like the questions people have most often about glioblastoma are about end-stage issues or about what's the best treatment available now and what's the best research in the pipeline. A lot of people want to know about clinical trials and how they can get into them. Will you be putting in some links at a later date? eg to clinicaltrials.gov, other brain tumor sites, etc?

Yes, the internet is a weird place. I sometimes post in discussion forums specific to my field of work. I'm fairly successful in my field. But if I say who I am, people don't believe me. Which feels very weird. So I stay anonymous and my opinions don't get the respect I'm used to being accorded in real life.

It's a conundrum, but since I choose to stay anonymous, I have to grin and bear it.

Which is all a convoluted way of saying... you may want to consider identifying yourself on your website. I don't know what the issues would be for you.

[NikosF]

I'd be more tempted to register for the website, if there weren't things like this in it:

1. Glioblastoma is a stage IV primary brain tumor, and is treated wtih surgery, radiation and chemotherapy.

Most NOs know to refer to GBM as a GRADE IV, not STAGE IV tumor in accordance with the WHO terminology. Yes, it is semantics and I'm being pedantic, but being sloppy is not something we want in our 'Docs', especially ones who accuse sites like the one we're on of :

I have noticed medically-based content online needed improvement

[artaran]

I have to say I agree with Nikos. A couple of things disturb me about this site. One is that no one takes credit for this site. Who is this doctor and from what medical center is he or she from? In addition to the inaccuracy of labeling GBM as a stage IV, it places astrocytomas under the category of spine tumors, but not brain tumors and has no mention of oligodendrogliomas. It also did a poor job of explaining the difference between a benign tumor and a malignant tumor.

It seems to me a legitimate website run by doctors would provide more precise and accurate information.

[BellaDi34]

I have to say I agree with Nikos. A couple of things disturb me about this site. One is that no one takes credit for this site. Who is this doctor and from what medical center is he or she from? In addition to the inaccuracy of labeling GBM as a stage IV, it places astrocytomas under the category of spine tumors, but not brain tumors and has no mention of oligodendrogliomas. It also did a poor job of explaining the difference between a benign tumor and a malignant tumor.

It seems to me a legitimate website run by doctors would provide more precise and accurate information.

I agree with your post completely. It does bother me that in the about us section it just says that it is owned and operated by a physician but never gives any other verifiable credential or where they practice. Also, having just had a Grade II Oligo removed it disturbs me not to see it listed on the site. One thing that I have learned is my recent experience is that my doctor prior to operating urged and encouraged me to check his credentials, and do some fact finding before I made a decision. So to see this type of site with no ownership makes me weary!

[dmercer]

Has anyone actually registered? I wonder what the articles are like? I'm weary of spam so I really dont want to register.

[Kermica]

docsbydocs, if you want to be of help you can do so here. Our brain cancer forum could possibly benefit from the participation of a qualified medical professional...consider that.

Good health,

kermica

[ChemoMan]

Sorry about that. I'm really just trying to help. I am a neuro-oncologist and I do see people every day in clinic to help them deal with a really difficult situation. Would it be okay to post about my site on your forum? If you want to clear my site, that's fine with me. I know the internet can be a crazy place, but it's the best way to disseminate good information for people who need it. Thanks.

Hi
The philosophy around here is that the best way that people can get information about their cancer and its treatment is by asking their doctors. You will see that as a consistent theme throughout these forums. Where we can help is by walking with our members as they go through their treatments supporting them and giving tips on how to deal with side effects and we can also help them resolve questions about treatment choices. We are also good at supporting carers who are struggling with the task of caring for their beloved family members who are suffering.
While we commend your efforts in trying to help the best place for our members to seek the type of help you offer is with a personal visit to their treating physician.

Kermica has given you an option on how you can help here. Unfortuantely we are not here to help you. Sorry but you will not be able to link to your site.

Thanks