Don’t P.O. The Cancer Patient….

and don't keep them waiting on their results (lab, scans, ect.)

Adriana has been having various issues for several weeks with pain and numbness in her shoulder, hips and legs but all pelvis, abdomen, chest, brain ct and mri's came back clean, so she was referred to physical therapy for possible pinched nerves?? A couple weeks in, she developed numbness and pain in face and slurred speech. Called in to oncologists office whom ruled out stroke/bells palsy as she still had control of muscles ect. Was referred to neurology, waited 2 weeks with no call back. She called oncologists office again. Neurology was called again, finally she was offered a last minute opening for this last Thursday. Unfortunately I had to miss a portion of the appointment (the part with the Dr.) Adriana's impression was that he was on the more than 50% side that it was cancer cells in her CSF sitting on some of her cranial nerves causing the problems. He ordered a lumbar puncture for Friday which was to be followed by a second if negative results for improved accuracy then followed by MRI of the brain and spine with double contrast. He said he was determined to get to the bottom of her issues as she had similar issues a year and half ago that different neurologist explained as side effects of Ipi (only one (negative) lumbar puncture was done at the time.) Friday's procedure was done by a LPN? As the Dr. was away at a conference for a week+. The procedure went fine although he said there may have been a drop of blood. I commented the fluid was pink or peach colored and it seemed I remembered it was clear the last time. I assumed that was due to blood??He told us as it was Friday no results probably until Tuesday and to call on Wed. if no call. If negative results then second lumbar puncture likely on Thursday or Friday. So after the usual waiting stress over the weekend and beginning of the week, no call on Tuesday.

Now to the meat of things. Wednesday at noon Adriana calls the office and is told the Dr. will have to call her back with the results. No call back by Thursday morning. She calls again and is told results would have to come from Dr. (as if we didn't already know what they were by now) and that Dr. was away at conference and that they had made an appointment for her to see him next Wednesday. She hung up and told me (not in a happy tone I might add) we were going down to get the results from the records department. I suggested I keep control of the cane she now is using lest someone get hurt. On the way down, the office calls to tell her of the future appointment and she tells them that we are on the way down there now to get the lab report. They said they would have it at the desk for her but no one was available to go over it with us. No problem on our part. On our arrival a nurse practitioner (that we worked with on her brain tumor) was made available to see us.

My main point of this post is DOCTORS—We absolutely understand that we are not your only patient and you are very busy and want you to go to conferences to be as knowledgeable as you can be. We also understand that people react differently to news and the preferred method to give and hear it is in person. BUT— PLEASE DON'T MAKE US WAIT FOR RESULTS. We are not naive to our situation and most people with advanced disease have some education on the subject and that you have likely educated us as to the likely scenarios before the testing was ordered. Most of us know that many radiology reports and lab results (even if preliminary) are available in short order, often within an hour. Leaving us to speculate or worry any longer than necessary as to the results does more harm than good to our well being. A short phone call followed up by an appointment can do wonders for us.

That aside, We were told that firstly one good aspect is that Adriana's MRI's have been clear and any treatments would have a better chance of working. Her CSF was discolored (as I suspected) and did have cancer cells in it. Leptomeningeal Carcinomatosis. In addition to her appointment with the Dr. on Wednesday to discuss treatment options she is scheduled to consult with neurosurgery about possible ommaya implantation. One potential treatment may be intrathecal Depocyt. (haven't found anything about this drug here on MRF (aka Cytarabine) any help. Only chemotherapy was mentioned, no mention of any immunotherapies. I asked if administration of the drug was similar to the treatment offered at MDA in Texas or if treatment similar to their offering was available here it seems as if the nurse practitioner was put off by my question and it seemed that she said we were welcome to investigate what they had there. I took that with a grain of salt at that point as we are now trying to gather as much info as possible.

As you imagine this past week I have been combing through posts on this site, and others as well as the general internet trying to gain information. Although difficult I have tried to have a measured reaction to prognosis and survival information ranging from 4-6 weeks with no treatment to 6-8 months with treatment as well as the the optimistic reports of persons treated at MDA surviving 20 and 10 years to date.

Adriana is on Social Security Disability supplemented by Medicaid here in Washington state and we have very limited income. Please be aware that we are forever grateful for the assistance she is getting and we do not believe she would be alive today with out it. I am unsure if going some where out of the area is feasible financially or even desirable at this time due to her son's schooling.

I have to say that although somewhat prepared for this latest development it does have me quite shaken. Any help, advice, or direction is greatly appreciated. Any advice for additional questions to ask the Dr. are also appreciated.

Rob and Adriana