Should brain scans be automatic w/Stage IV

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Should brain scans be automatic w/Stage IV

Postby Jenn1313 » Mon Dec 19, 2016 9:02 pm

My significant other is a Stage IV patient as of January 2015. He started on Keytruda treatments in May of 2016 to treat reoccurring lung metastases after a double lung wedge resection in August 2015. The oncologist stated that they only do brain scans if there are symptoms that may indicate brain mets. In August of 2016, a new scan showed that the lung mets were indiscernible, however he started having symptoms which included headaches and tremors in the left hand. A trip to the emergency room along with a brain scan showed multiple brain mets. A right front craniotomy was done along with Gamma Knife three weeks later, and now back on Keytruda. It has been a very challenging 4 months, but I still have this burning question while trying to process all of this; with any stage IV melanoma patients, why wouldn't the oncologists order regular brain scans, if at least not for a baseline? Our new oncologist stated that the largest tumor had been there a while and I can't help but think that this could have been caught sooner had more frequent brain scans been completed knowing how this disease can spread so rapidly.
I look forward to any feedback you may have.
Thanks
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Re: Should brain scans be automatic w/Stage IV

Postby jeffb » Tue Dec 20, 2016 11:15 am

Jenn:

I'm sorry you have to go through this but you've come to the right places with MIF and in this care givers forum. There is a lot of sharing here and frank discussion.

So, I'll be frank, IMO a brain scan (specifically an MRI with contrast) should indeed have been done at least as a base line at the stage IV diagnosis and then repeated periodically (every 6-8 weeks in the case of my wife). It's always best to catch this crap early as intervention (surgery and/or radiation) is then less traumatic to the brain (and to YOU!) as there is less "total irradiated volume" when caught early. Also, the longer a met in the brain is left alone, the greater the chance and extent of any symptoms, including a bleeding stroke and possible death, depending on where they appear in the brain. One fact is that melanoma lesions can be highly "vascular" with extensive and convoluted blood supplies that can be prone to bleeding, not to mention the pressure they exert on surrounding tissue.

To be frank again, if it were me, I'd be looking for a different oncologist, one that specializes in melanoma, has extensive experience, and is connected & respected in the melanoma treatment community.

Jenn, post here in the caregivers forum as well. We may not have the disease but it certainly affects us caregivers in very deep ways too and we have our own symptoms that need attention as well.

Jeff
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Re: Should brain scans be automatic w/Stage IV

Postby Jenn1313 » Tue Dec 20, 2016 7:57 pm

Thank you Jeff, I appreciate the honest feedback and very informative response. Unfortunately, this oncologist is one that specializes in melanoma, and according to him, 85% of his practice consists of Melanoma patients. We believed we were in good hands and trusted him when he stated that there was no need to do a brain scan. We have since moved onto a new oncologist, but have lost faith in the medical system. Needless to say, I am still trying to deal with a large range of emotions each day while trying to remain strong for my loved one. I will definitely continue to post here in the caregivers forum as I am sure I will continue to have questions as we continue on our journey.
Thanks again,
Jennifer
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Re: Should brain scans be automatic w/Stage IV

Postby Catherine Poole » Thu Dec 22, 2016 1:41 pm

Specializing in melanoma means being active at a research site, not just seeing a lot melanoma patients. Those involved in research tend to be on the cutting edge of treatments. Yes, a brain scan is an excellent idea, because if there are mets, you want to catch them when they are small and easy to zap. Where are you in the U.S.? Maybe we can help you find a good second opinion.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Should brain scans be automatic w/Stage IV

Postby Jenn1313 » Fri Dec 23, 2016 6:10 am

Thank you. Yes, this oncologist is very active in research, etc., at a reputable facility so it just troubles me as to why the scan wasn't done initially. We can't change it now. We are located in Cincinnati and have a team of dr.'s that we are now working with. If you know of a specialist in the area, I would welcome that information.
Thanks
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Re: Should brain scans be automatic w/Stage IV

Postby Catherine Poole » Mon Dec 26, 2016 8:15 am

If you are up for traveling, the tops centers are in NYC, Baltimore and Philadelphia. Not much is happening in Ohio, although Ohio State has been doing more research. The scans should be done.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Should brain scans be automatic w/Stage IV

Postby Jenn1313 » Tue Dec 27, 2016 7:57 pm

Thank you!
Jenn1313
 
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Re: Should brain scans be automatic w/Stage IV

Postby Catherine Poole » Tue Jan 03, 2017 8:07 am

Keep in touch and we would be happy to help you further.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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