Ok just a little recapMay 18th wake up with enlarged lymph nodes make family doctors appointment tells me doesn't think it's cancerous schedules for blood tests, chest x-rays and a needle biopsy with surgeonJune 11th was my visit to the surgeon. Expecting to have a needle biopsy it's instead a referral, looks me over touches the nodes and says' he'll do a needle biopsy but would suggest having surgery done, I suggest the needle as maybe surgery isn't necessary, he tell me "ok just to make me happy ands not think he doesn't want to try the needle" On my way out he explains he believes it's benign and should go away on his own. Has the nurse schedule for needle biopsy at local hospitalJune 22nd I thought was my appointment getting all ready to go and look at the form to see where it is, discovered the appointment isn't until July 20th, Mom calls the office explains can't understand how why we have to wait over a month, gets appointment changed to June 28th.June 28th Go to the hospital to have the needle biopsy I get called into the room where the Dr. is making jokes, (nurse had shoulder surgery, he tells her to raise her hands she does..then says grab the bottom of your top and raise your hands she giggles), lies me down and takes first sample of tissue, then attempts to take a second sample with the SAME needle, after the nurse explains you can't takes the old needle away and gives him a new one. At the end of the Needle as I am getting ready to leave he tells me now that I am looking at Hodgkin as the source of the problem. Life comes to a stop. Told to call end of the week to find out results.July 2nd call the office but closed for the Long Weekend (Glad they told me that at the hospital)July 5th Called the surgeons office, receptionist tells me they don't have the results, then says the doctors has to talk to me, I get the Surgeon on the phone and he says that" It is what we thought it was and talked about at the hospital and they need a larger sample to determine the type of chemotherapy) my moment of break down, I'm a complete mess for the next couple of days. I have an appointment for surgery on July 21st.July 7th I had an appointment with one of the family doctors we talk and he explains the situation, I discover at that point there is no definite answer as of yet what I have which means the surgeon was wrong in telling me that I had Hodgkin. I feel much betterJuly 21: Go in for my surgery somewhat nervous, first time ever been opened up, Surgeon comes up and tells me doesn't appreciate my mom bothering his receptionist and to tell her to "back off babe", go in for surgery and everything turns out well. For the next 2 weeks I call for the results I am told that they had to send out for a second opinion but can't tell me where as they don't have any idea where it is.July 30th I get a phone call from the regional Cancer care unit, I have been referred to a hematologist there. I'm under the assumption the results came back positive, no one calls me just the hematologists’ receptionist to confirm my appointment. I call my family doctor to see if any results have come in he says yes and the report says suspicious of Hodgkin, he now too believes it's Hodgkin. Tells me the Hematologist is very good. I tell him what I think of the surgeon and he tells me he's a good guy...Maybe a good guy but a lousy doctor.
August 9th Meet the Hematologist. Asks me the same questions everyone else has been asking me and no other symptoms just the nodes. Then I'm told the results from the second set of results haven't come in. I explain to her that I was told she had them. She has her assistant look into it and we discover that London has the test and still looking at them. She schedules me for blood work, chest x-rays, CT Scan and Gallium scan. I have the Blood and x-rays done right away, Gallium for august 23rd and 26th. CT September 7th.August 23rd get 3 voice mails call from the Hematologist. 1. Hematologist she and the pathologist in London talk, Hema asks if the Patho can make a call. Path explains very iffy and cannot make a definitive call. Patho asks for more tissue. 2. Hema will contact Surgeon and make another appointment for biopsy. 3. Hematologist calls Surgeon says no point in doing surgery as all tissue in that area is necrotic and nothing will be of any use, and we will just keep heading forward and get me started on treatment. Talk to a Friend of a retired Doctor and explain the whole situation explains that Surgeons have no say in the matter and to get a new one. Explain to the hematologist I would like a biopsy on the other side and with a different surgeon. I also explain with out diagnosing me I will not go through any sort of treatment. She agrees and says she will setup the appointment. Also explain will be gone for 3 weeks. I get the blood results from 3 months ago and the blood results from the recent tests...what I found is my red and white blood counts are up. Met wit the new surgeon and very nice, actually called me into his office looked me over asked me the same symptom questions and explained the dangers of doing the surgery. Oh before that I get a phone call this past Tuesday I had missed my appointment, for some unknown reason the hospital didn't call me to tell me the date so the surgeon’s office decided to talk to me directly. When I called to complain to the hospital I was told "that's unfortunate that it happened” Got my results on Thursday from the Gallium scan this scan tells of any other active lymph nodes in the system results only in my neck where we can feel them. As for the first surgeon a complaint will be filed with the CMA and the Ontario College of surgeons. I'm also considering placing in a complaint with the hospital that considered it unfortunate that they didn't inform me of my appointment. So as of now after being told and admitted to a cancer care hospital, it is not confirmed I have anything. Most people at work can't believe what I have been going through and don't understand how I've been able to handle all this; I figure I'm just more annoyed with the medical field or maybe just the healthcare system in this city. My next surgery is on September 22nd. Though after the CT results I may reconsider it after having a talk with the hematologist to say what else could it be. I think it's time to just sit back look at the physical facts we have on me and instead of trying top feed me some toxic crap for something I may not have looking at all the possible angles of what it might be. I'll keep anyone interested posted, and if anyone else has ever had a similar thing I would love to hear from you. On a side note before I end this BLOG the new surgeon did tell me on rare cases (as such in my case) it can be extremely difficult to determine Hodgkin.
