New Diagnosis, Questions regarding 1st trip to oncologist

Carl · New User Joined: 15 Feb 2008 Posts: 1

Hi All - First off thank you for being here. This is such a frightening scenario and knowing how others have been here already is so comforting. This week my mother was diagnosed with Pancreatic Cancer. She had unexplained swelling and discomfort and shortness of breath last week serious enough to go to the ER. The doctors thought gall bladder, congestive heart failure, until finally doing an endoscopy to find a 7" mass I think at the tail (forgive my sketchy details - this is all new), and it is on a main vein or artery. My suspicion from what I have read is that because of where it is, surgery won't be an option until possibly it shrinks. My mother is 71 but incredibly youthful - most would think by looking at her she was 50, and like so many I have read about, we thought in great health before this. It is an incredible shock.

Monday we have a first visit to the oncologist so I am going with her - but this is a first visit. From what I understand she also has an appointment with an Oncologist at Sloane Kettering but the first appointment available was March 10th. Her doctor was not in Friday but the nurses said he will make some calls on Tuesday to see if he can get her in faster. Again from what I read Sloane Kettering is really one of the best so I would prefer her starting there but waiting 3 weeks to do anything would be out of the question. She is strong and currently relatively healthy so now would be when chemo should begin. Hopefully the doctor will get her in sooner because I just feel better about Sloan Kettering.

She has a cousin who is a Pacreatic Cancer survivor in complete remission so yes, the odds are against her but yes, the possibility remains for more time and so far her attitude is incredible. She wants to fight - she would have had the surgery already if it was an option and she has prepared herself for tough chemo. I don't know how she is doing it but as it is always with my mother I am inspired. This woman is an angel on earth and our prayers to God are to just give us more time to love and learn from her.

My questions are a few so if those with experience can help it would mean so much. Her first fear was insurance. She has an HMO open access with AETNA and medicare supplementary. I don't know how it came up but she is already planning the Whipple Surgery which I told her last night to prepare herself that very well may not happen for awhile - that from what I read because of the vein they wont consider it until they can see how the chemo is working and after the tumor shrinks. I understand she just wants it out - I am sure that is a natural feeling but it has to be at a stage where it is operable. She must have been already planning this surgery and someone said with her insurance it has to be preapproved. I am familiar enough with HMOs that all major surgery needs preapproval and I think this is totally normal but just to give her one less thing to worry about for when and if that time comes - has anyone had any trouble with HMOs covering this type of surgery? I know it's probably not in the near future but I just want to ease her worry.

Next is Monday's appointment. As I said before this is what she is calling her first opinion - but not her first choice of oncologists. I think we are going there because he will see her and she is so anxious to get this going. What are the questions we should be asking. What is the information we need to know about her condition, obviously treatment options, should we be asking this oncologist experience questions? What about diet restrictions? If you all could think of what info we should walk out of that office with that would be really helpful.

My other question is what should we be doing for her besides the obvious. We are all being strong around her - leaving the tears for private. Trying to bring laughter, love and distraction from this awful situation. I read post about the importance of owning this and I am so proud of how she is. She is talking about her fears, she is talking about her doctors, she is interested in learning about the illness, but she is also continuing to live - unlike myself who would be curled up in my bed. She is just an amazing woman. At her home I wanted to do some cooking so she can just pull things out of the freezer. What are foods I should avoid for her? I have always read sugar is so bad for cancer - actually feeds it and I think I read high protein, low fat but again would like to hear your thoughts. Her husband actually also has cancer - prostrate and is set to begin his treatment in a couple weeks as well so this is something important for both of them. Neither are waisting - both appear healthy at this point but I know once treatment begins things will be really hard. I wat them well nourished so they are strong for battle.

Thanks so much - your advice is so needed.
Carl

brainman

Hi Carl, I am very sorry about your mother's Pancreatic Cancer. I am not very clear on one fact: have they already done a biopsy? At this point, most of your questions should be about the biopsy (stage, size, location in the Pancreas) and treatment options (is surgery an option?).

If I were you, I would get a notebook and start a medical journal. I would spend some time between now and Monday looking through other post in this forum and writing down any questions that you have. Take the notebook with you to her appointment and ask her medical team all your questions and writing their answers in the journal. I have had such a journal since I was first diagnosed in 1992. It always amazes me how questions seem to fly our of my mind whe the doctor comes into the room. But if I have them in my journal, I can be reminded of them.

You and your mother are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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