So after spending a solid 3 hours at UW Medical Center (top 5 Cancer Center in US) w 3 different docs (and 1 RN) I think i got an idea of what this treatment thing is all about. First of all, every person's tumor is specific to them, and there is no guarantee how one's tumor will respond to treatment (now or in future) and how it will behave biologically.
Based on the tumor board's analysis of my MR scans, it appears as tho the spot on my left side (that we hadn't been aware of till this point... i guess bc they weren't concerned about it until now) has become more apparent/dense (meaning, the cells have multiplied in that area). It is inoperable due to the fact that crucial brain structures would be damaged in the process of accessing the tumor site (on the left side... Not to mention the growth on the right side-as shown in the pic i posted, as well as residual tumor surrounding the resection cavity...and a couple *small* spots below it).
Initially i was set on sending out my records to numerous facilities for 2nd opinions (Swedish, Cedar Sinai, Barrows-in AZ) all of which my doc has had much experience with. However, the fact still remains that i need treatment...and it is up to me which road i want to pursue-chemo/radiation ASAP.
When i got word last wk that i would need treatment, the first recommendation was 5wks of radiation (M-F) or chemo as a 2nd alternative choice...after some research we were under the impression that chemo would make the most sense. However, we were unaware that in my case i would require TWO YEARS of chemo (temodar)!! which, of course, i would do if it was in my best interest...side effects=NO loss of hair :O)), nausea/loss of appetite/weight loss :O( Additionally, the tumor is still capable of growing while undergoing treatment and isn't likely to shrink in size (which i was unaware of!) Apparently, the goal of treatment (from the medical perspective), regardless of what method i choose, is to stop growth-- increasing the length of time bt progression of tumor...they said either way, realize that "chemo (and radiation) is in my future" (which doesnt scare me that bad, bc i know Who is ultimately in control)
I asked my Doc (chief of neurosurgery, Marc Chamberlain) what he would advise me if i were his daughter, and he said definitely radiation. This is also supported by a recent European study of low grade gliomas like mine that shows decreased rate in tumor progression following treatment. Another major factor is the fact that i currently have no presenting symptoms...if i were to do chemo first, and develop symptoms due to progression of tumor, THEN choose radiation, those symptoms are likely to be irreversible.
Having said all that, the only method of radiation appropriate for me is traditional radiation. This is because a large majority of my frontal lobe would need to be targeted in hopes of stopping growth, and covering the pertinent areas. This is a very high-tech, scientific process (as u can imagine) specific to ME and my tumor type. It is given at the highest, safest dose taking about an hour door-to-door (about 10-15min under the 'beam") which i will be completing in seattle at UW. Metaphysists and radiologists actually devise a plan to orchestrate the beams in such a way as to concentrate largely on the areas of concern, so as to spare normal brain tissue from being compromised. Major risks include avoiding critical brain structures (optic nerve and pituitary gland) where if affected could have fairly negative side effects-most reversible by drugs (aside from vision ;o)...but they said the tumor is far enough away where this shouldnt be a problem :O)) Another thing that could be scary is the possibility that my hair will not grow back after treatment (!!!AH!!!) Good thing you can find yourself a decent hair piece if need be-hahaaa :O/ then there is the usual extreme fatigue, short-term memory loss, difficulty concentrating/multi-taskin
As far as diet, supplements and alternative medicine goes...brain cancer, specifically, is unique bc there is what is known as a "blood-brain barrier." Blood is actually toxic to the gray matter of the brain and there is actually a filtering system, so to speak, in order to keep it protected. Because of this, most forms of supplementing/dieting are ineffective w respect to brain tumors. As a matter of fact, only certain meds (temodar for example) are able to target the cancer cells in the brain (bc of it's anatomical structure/function...make sense?)
SO. thats the scoop (in a nutshell)...feeling good tho...i think it's the best possible decision at this point and am confident i will emerge a stronger person bc of it! thank you ALL for your prayers, love and support--it means A LOT to have friends and family close by in times like these...cant imagine how ppl do w/o it!! (which, has inspired me to spend my time in retirement type facility(s) during this next couple months! :D!!)
0 comments:
Post a Comment