Newly Diagnosed with GBM what can I expect?

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Newly Diagnosed with GBM what can I expect?

by optivity on Sun Aug 13, 2017 06:39 PM

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I received a dignosis of GBM less than a week ago on August 7th from Albany Medical Center Hospital in Albany NY.

I am a 61 year-old caucasian male and this diagnosis came out of nowhere.

I was not impressed with the care I received from AMCH so I have decided to seek treatment elsewhere. Either Sloan Kettering in NYC or Roswell Park in Buffalo NY are lkely alternatives.

It has been difficult to get an initial appointment with a cancer doctor and it certainly does not help that AMCH has been dragging their feet with getting my records sent to these providers (Hospital Chart, CT SCANs, MRI).

I was scheduled for a biopsy at AMCH last Friday, August 11th, but I cancelled that procedure. Did I make a mistake?

I get the impression my neurosurgeon could not get rid of me soon enough and dish me off to oncology.

So what do you suggest? Should I eat humble pie and ask my neurosurgeon to treat me or should I strive to make an appointment with an alternate provider?

RE: Newly Diagnosed with GBM what can I expect?

by hopepraylove on Sun Aug 13, 2017 07:04 PM

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Hi, I am sorry to hear of your diagnosis. My husband is also 61 and was diagnosed in February 2016. He did the standard of care (surgery, radiation, temozolomide, then higher dose tekmozolomind 5 days on/23 days off) for one full year. He stopped the chemo in April and just learned last week that there is new growth. We are currently discussing clinical trial options with University of Miami and the brain tumor center at Duke. Either of us would be glad to answer any questions. Every patient is different. I wonder why your provider wants to do a biopsy if they have already determined it is GBM. My husband never had a biopsy - he went straight to craniotomy after going to the ER with mild "absent seizures." You want to be at an academic institution (research hospital) for a brain tumor. Once the standard of care has failed (which is what they say when it returns), this is cutting edge stuff. You want to be where clinical trials are happening and you have multiple options to choose from. And excellent doctors (we are very happy with both the facilities he goes to). If you are having trouble getting medical records, I suggest you call and tell then you are coming and go pick them up and fedex them yourself. They are your records and they have to give them to you. Best wishes, Christi

RE: Newly Diagnosed with GBM what can I expect?

by optivity on Sun Aug 13, 2017 07:41 PM

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Thanks for your response Christi.

I'm not sure if I received the best care from AMCH hence the desire to seek an alternative.

My neuosurgeons basically BS'd me from the get go...

One young guy who read the initial CT scan seemed to believe he could resolve the issue, but I haven't seen him since.

Before that a young woman doctor came to see and indicated I had a major stroke -- wrong!

Now I got the head of neurosurgery who cannot get rid of me soon enough. I think he wanted to do a biopsy & run a pathology then dish me off to oncology.

Oh, did I mention I was in the hospital for more than 48 hours before they did an MRI? I had to throw a hissy fit and ask for the attending doctor to get moved up the list of patients seeking MRIs. AMCH has just 2 MRI machines.

So needless to say I'm not too impressed by the care I received at AMCH.

RE: Newly Diagnosed with GBM what can I expect?

by diazfam on Sun Aug 13, 2017 09:42 PM

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On Aug 13, 2017 6:39 PM optivity wrote:

I received a dignosis of GBM less than a week ago on August 7th from Albany Medical Center Hospital in Albany NY.

I am a 61 year-old caucasian male and this diagnosis came out of nowhere.

I was not impressed with the care I received from AMCH so I have decided to seek treatment elsewhere. Either Sloan Kettering in NYC or Roswell Park in Buffalo NY are lkely alternatives.

It has been difficult to get an initial appointment with a cancer doctor and it certainly does not help that AMCH has been dragging their feet with getting my records sent to these providers (Hospital Chart, CT SCANs, MRI).

I was scheduled for a biopsy at AMCH last Friday, August 11th, but I cancelled that procedure. Did I make a mistake?

I get the impression my neurosurgeon could not get rid of me soon enough and dish me off to oncology.

So what do you suggest? Should I eat humble pie and ask my neurosurgeon to treat me or should I strive to make an appointment with an alternate provider?

Hi optivity,

I would not hesitate to get another opinion & any physician worth the paper his/her degree is written on will have no problem making a referral for you. I would recommend calling & speaking to the nurse in the neurosurgeon's office tomorrow to see if he/she can facilitate that process for you. Whomever you choose should be a well regarded, research oriented medical team with whom you feel confident. This should consist of a neuro-onclogist, a neurosurgeon, a nurse, a social worker & possibly a therapist or a support group. With that said, you will be your own best advocate. It is your body & your choice of treatment. It is the physician/medical team's job to present those options to you.

I agree with everything that Christy said & also would recommend a family member or friend going to every appt with you to help remember all that is said. A notebook & three ring binder will be really helpful for the reams of paper you will soon accumulate. It is easy to forget names/dates/phone numbers but having them in one place will be super helpful. Take it to every appt, especially with anyone new. Include your med list with dosages, even supplements, as sometimes they can interfere with some prescription meds. Keep it updated because they will want that info at every appt.

Standard of care is normally surgery to remove as much of the tumor as possible, followed by chemo - Temodar is first line- then radiation, which can either be whole brain or proton. Not to defend the neurosurgeon you saw, but maybe explain your feeling of being "shipped off"...ours repeatedly told us that he was just the "knife guy", lol. He said the neuro-oncologist & my son were the "captains" of the ship & other than surgery his input was pretty limited. I would think your main priority should be to obtain a reputable neuro-oncologist. Again, since you have already accumulated some records, I would call the surgeon's office tomorrow to see if they have recommendations or to provide them with the name of the person to whom you wish to be referred. Then, you can call AMCH medical records & tell them you need all your records for a referral & that you would like to pick them up. If there are a lot, they may tell you 24 hrs, but when they are ready, you can take your ID & get them. Make a copy for yourself & fed-ex them or drive them if it's close. That way, you know they are there and have your own copy in case you need to provide them to someone else.

I wish you the very best & hope that you are able to make some progress with your appts this week. If I can answer any other questions, don't hesitate to ask.

Take Care,

H

RE: Newly Diagnosed with GBM what can I expect?

by optivity on Mon Aug 14, 2017 12:05 AM

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Thanks H, I will be more proactive regarding my treatment this week.

I don't understand why my neurosurgeon was so quick to write me off last week? Perhaps he saw something on the MRI he did not like?

I'm told I have 3 brain lesions (1) large on the left upper part of my head, which is about 5 cm & (2) smaller on the right.

He really has not spent a lot time with me or answered my questions. His office assistant is difficult to reach preferring to let her phone to go to voicemail and then not returning my messages on a timely basis.

Overall I've had a very poor experience at AMCH. Lets hope things improve this week.

RE: Newly Diagnosed with GBM what can I expect?

by diazfam on Mon Aug 14, 2017 02:07 AM

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I'm not sure why either. It doesn't make much sense. Did he say the tumors are inoperable? Whether they are or aren't, you should already have a referral to an oncologist that specializes in GBM, usually a Neuro-oncologist. Also, ask to speak specifically to his nurse and see if he/she can get you the referral or find out why you don't have one. If that doesn't get you anywhere, just call the place you want to go and see what they need to make an appt. It is a frustrating and overwhelming process, especially starting out. And unfortunately, there are way too many of us that are in need of being seen.

Good luck this week. I hope you are able to get your records & the appt made!

RE: Newly Diagnosed with GBM what can I expect?

by optivity on Mon Aug 14, 2017 11:53 AM

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I do have an ucanny knack to piss off some people so perhaps my doctor just doesn't like me?

Regardless, he should be more professional.

The only thing he shared with me last Monday 7/7 is he wanted to a biopsy, run a pathology and put me in touch with oncology.

I will give his office until noon today before I call them.

I'm dual tracking this for a 2nd opinion. I have reached out to Sloan Kettering and I got in touch with Roswell Cancer Institute late Friday.

RE: Newly Diagnosed with GBM what can I expect?

by diazfam on Tue Aug 22, 2017 07:32 PM

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Hi, how are you doing? Just checking in to see if you were able to get appointments made?

Take care,

H

RE: Newly Diagnosed with GBM what can I expect?

by hksal on Thu Aug 24, 2017 05:22 PM

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Hey Dude, 

Glad to hear you're in New York. I had surgery with Dr. Jeffrey Bruce at Columbia 2 years ago, and he is the best. They have a whole brain tumor team there who can work with you on diagnosis and treatment. Definitely make an appointment to see him. The neuro oncologist there is Dr. Andrew Lassman, and he is top notch as well. I had surgery there as well as the 6 weeks of RT + Temodar and I'm on my second year of monthly temotar now. Go see them and get it checked out. 

RE: Newly Diagnosed with GBM what can I expect?

by optivity on Thu Aug 24, 2017 08:26 PM

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So a lot has happened since I was here last.

Last Thursday I met w/the medical team from Sloan Kettering located in NYC, which is led by Dr. Tabar. She is a neuro-surgeon & she performed a Craniotomy on Friday to remove as much of the tumor as possible.

There is a 5" incision at the top of my skull. I was discharged on Monday & I am recovering in Albany NY at home.

I have an appointment on Thursday Sept. 7th to receive my medical diagnosis based on the pathology report.

Then I have a decision to make. Either accept treatment from a neuro-oncologist in Albany or from a neuro-oncologist in NYC.

Presumably I will take some combination of chemo & radiation but what I'd like to ask is I don't feel all radiation machines are equal. So what should I do?

Do I accept treatment in NYC w/Dr. Taber managing the case or do I accept treatmeant up in Albany, again w/Dr. Tabar managing the case?

The good news is I am recovering well. I am regaining strength on my right side. I am struggling less to articulate my thoughts into words and my sense of balance has been restored.

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