Hi all,
Lately I have been rather elusive....although my father was 75, his sudden illness and passing seemed quite unexpected. Thank you for the kind thoughts and condolances, I appreciate the "family" support here at our forum. I also have been elusive as my current condition seems difficult to identify or navigate as of late. After much testing, researching, consulting and contemplating; I would like to share and ask for ideas and thoughts.
In Dec I had my 9 month check up which revealed the following:
Positive Gram stain - treated with bactim
Labs - quite a few were off...I was dropping protien and sugar in my urine, blood show high phosphorus, alk phos, sugar, chlorides and a few other things were off and borderline.
Neo - appears to be functioning ok although hydronephrosis was noted and a 1 cm bone met was seen in my left saccral area. They wanted to do a bone biopsy but could not catch the lesion on a CT so guided biopsy was not possible.
I was sent home, told to return in a few monthes. They said "treating the met prior to it being symptomatic would not improve my survival rate."
At this point (late Feb), I sought another reputable cancer center. After all the testing, etc. This is where I am at:
Labs - Blood and urine show I have some stage of kidney disease and am likely prediabetic. (I have learned from seeing my fathers siblings that his mom and all his sisters have been diabetic and had kidney disease too)
Imaging - has been extensive. They see some echoing fluid from th L4 & L5 down and in the left saccral area but cannot conclusively call it mets. I have pain primarily when I am sitting or laying down and am taking pain medication 1-2 X a day to get thru the day. They are now doing additional studies on my shoulder tumor which has been labelled previously as an enchondroma (benign) as it has grown to be 6 cm now. Thoughts range from it possibly being a met to being a new primary bone cancer. All of which has me rattled a bit.
I have seen an onco urologist, orthopedic radiation dr, and an onco who deals only with urologic cancers. They all agree the lesion on the Dec films is a met. They all also agree the newest films are inconclusive. This leaves me in a strange place where I am extremely apprehensive. My original BC was difficult to dx and when it was it was worse than they thought. I fear the same thing is happening again.
The only "treatment" I have had since Dec is a nutritional one thru a naturopath. In January I began a serious nutritional program which included only organic foods and supplements. I leaned very heavily towards alkaline foods as well. I also took plant enzymes, chlorophyll, and more. Essiac tea with many added roots and herbs to assist my kidneys and liver. I did this for 1 month and stopped as my new oncourologist asked me to while testing. BTW, I have begun selfcathing 1-3 times a day as my residuals have been apx 120 cc and greater.
All this said, I have been confused and unsure how to proceed. I have tried to learn what other bone conditions can appear as met spread on bones. I have explored effects of kidney disease on bone. Even if bone mets can "dissappear" without treatment. Any thoughts here? ( Pat, Zach and Wendys- I am hoping for input
All I can believe at this point is that the nutritional approach did "something" that medicine cannot explain. I am back on the nutritional therapy and diet just incase that was the reason my imaging has gone from clearly met spread to inconclusive.
I would appreciate direction and input as I don't understand and am a bit freakedout. Thank you all for the support thru all this stuff, God Bless, Holly
