just thought you might be interested in my blog over the past year dealing with Dr. Clune and also my latest posting on the colon cancer forum I belong to.
Tom (My boyfriend) will be calling you tomorrow as from now on I don't have anything to say to anyone at the cancer treatment center and Tom is my patient advocate and will speak to you, Dr, Clune, Amy, etc for me and I will go along with any decisions Tom thinks is best for me.
I am also calling the American Cancer Society and the American Medical Association regarding Dr. Clune. Simply to ask a few questions.
Here is my blog:
http://coloncancerstageiv.blogspot.com/
Here is the latest posting on the colon cancer forum:
I called my Oncologist's office today and spoke to both the other Oncologists Assistants, they said they would speak to the Oncologist's and get back to me, not three minutes after I hung up with the second one, Amy, my Oncologist's Assistant called me and said that in that office they did not allow switching of Dr's inside the same office and no Oncologist would be able to tell me what I wanted to hear.
Tom and I were out and I broke down. It seems Tuesday I will go to get my PET scan then Wednesday I am to CALL my Oncologist and get the results over the phone (Now I have not had chemotherapy or any treatment since July 19th so I cannot see how the results of the PET scan will be anything but worse than they were and yet he will only do a PHONE consultation to tell me the news? He won't have me come into his office to explain it to me?????? How can that be?) then he won't see me for I guess another six weeks unless I do chemotherapy. I don't know how to make a decision to do chemotherapy without some help from my Oncologist but I won't get any so I guess I just will not do chemotherapy as I originally planned no matter if the cancer is standing still or has gotten worse as I just cannot take those side effects anymore, at least not without some input from my Oncologist on if say I might have a year left and the chemotherapy might give me three more months, well then I would not do it as I could not bear the quality of life with the chemotherapy but if I had a year left and the chemotherapy might give me six months or a year more than I would talk to Tom about it and decide. But how can I decide when I don't have any facts or statistics or help to decide?
So as of right now "IF" we go back in to see the Oncologist I see right now at any time Tom will have to talk to him as I will not say word one to Him and if my Oncologist will not help me in giving me the facts on both the benefits or disadvantages of doing chemotherapy right now then I will simply not do treatment. As my Oncologist said to me Monday, "You still look healthy" so I am not going to die right away and I don't know what else to do but heal from the hernia treatment then live life to the fullest and enjoy life as I did before I started going to this Oncologist and started chemotherapy.
To tell you the truth my Oncologist has me so scared that no other Oncologist will help me in the way I am asking for help, (He and His assistant both keep saying over and over again no Oncolgist will tell me how long I have or what the chances of survival are or anything close to my question) that when I even think about calling to make an appointment for another Oncologist or having to go see one and go through this whole thing again I break down and cry for about an hour before I can get myself under control. I guess I will just wait and see what my results of my Pet Scan are, figure out for myself how much longer I have then never see another Dr. again until I get to the end of my life when I have to be put on hospice.
It's my fault for not listening to my instincts when I first walked into this Oncologist's office and for being wishy washy about seeing another one during this time and now I am paying the price.
Total hysterectomy July 23 2008, mass in colon.
Colonoscopy Aug 2008
Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
July 24, 2010: Decided to stop chemotherapy
Next PET scan: Sep/Oct
Most recent CEA Level: 08/16/10: 284.8 up from 08/02/10: 163.7
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