Need help finding a doctor in California
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Hi, All,
I went to UCSF and met with a very nice young doctor who has just gotten to be a MD. She worked under Dr. Venook and has been doing her fellowship at UCSF in the Gastrointestinal Oncology Department. Bile Duct cancer was not new to her. She wanted to take my scans and records to the cancer board but since Monday was a holiday, it was two weeks before they would meet, again. She wanted to make sure that surgery was not an option for me. It is not, so the next treatment would be more chemo. Because my last blood test was some better ( CA-19) is still very high, but it had come down and the CT scan showed no growth (and no shrinkage) so she thought we should wait another month or two before another CT scan unless I develop new symptoms or the next blood test looks worse. So, right now my treatments are on hold. Dr. Lenz’s office, also, gave me an appointment but it was not until the last of February, so I took the first one I could. Since UCSF is closer to where I live, I have decided to go there and not keep the USC appointment. I am pleased with Dr. Kelley and I appreciate that she returns my calls. I went to see a Natural Health Care doctor (ND), hoping that she can help. The oncologists that I had been seeing, said to eat anything and everything, but I want to see if diet may help. I have given up desserts and try to watch my sugar, but would like to know if there are vitamins that I should, also, be taking. When I was diagnosed with cancer, I stopped all supplements not knowing which ones might help or hurt. Without all of your encouragement and knowlege, I would not have found UCSF Gastrointestianal Dept.. Have any of you dealt with alternative teatment?
Best wishes to you.Good job Rowena in advocating for yourself. We are all proud of you and will await hearing from you as to future results. You are a very strong women with a great attitude.
Darla
Hi Rowena,
It does indeed sound like you have a plan and that you are up for the fight and facing this with a very positive attitude. Good stuff! Good luck with your app for Friday and I will keep everything crossed for you.
Best wishes
Gavin
Rowena…..good luck on Friday. The rain should have subsided and I wish for a safe travel. I agree with you in that you have gathered plenty of opinions and therefore, you are able to make a well informed decision. I would have loved to have met you but, I am leaving for Florida to attend the GI ASCO, on behalf of the Cholangiocarcinoma Foundation. Hopefully, I will be able to connect with you another time.
Best wishes,
MarionVery good, Rowena. You did well. I can hear the change in your “voice”. I would imagine its so much harder to be the patient and the patient’s advocate at the same time but you did an amazing job in a short time. We will be anxiously awaiting news from your visit. You are FAR from giving up. You may have a plan and that is the important thing. We know you are going to keep us posted! Darn good work!
Marions, Raye, and Gavin,
Thank you for your support. This morning, I got on the phone and called UCSF and finally got to speak to Robert, Dr. Venook’s coordinator. The first appointment available to see Dr. Venook would be Feb. 1, but I could get an appointment with the doctor who sees his “over-flow” patients on Friday.
She has been working with Dr. Venook for two years. I made the appointment with the understanding I could see Dr. Venook on Feb. 1st, if I still wanted to. I just didn’t want to wait that long to see someone. I got a call from Dr. Lenz’s office but I was not home when they called. San Francisco is about a three hour drive from home and USC would be about five hours+. I faxed my reports last week to Dr. Venook but for some reason the blood tests were not sent so I faxed those today. I did not have any tests done at Stanford, but I did call and asked when they were sending me their findings which I had requested on 12/17/09. They are suppose to be in the mail. I do have a letter from the doctor I saw there saying that she would recommend a round of Gemzar and Cisplatin. I will pick up the scans on the CDs tomorrow, for they requested them on Di-Com format, and the ones that I have are on a different format. These I will take with me on Friday. So, if they say that surgery is out and that chemo is my only option, I have made up my mind not to look further at this time, but go with that. Doesn’t mean that I am giving up, but to put my energy into fighting it with the means that is available to me.
I will let you know what I find out. You all have been so helpful.
RowenaHi Rowena,
I know what you are going through with the anxiety and having to play the waiting game, we have all been through that. Please don’t give up, stay positive and I am sending you loads of positve thoughts and wishes.
My best wishes to you.
Gavin
Rowena,
To add to Marions reply I can clarify that Dr. Gores has patient’s doctors approach him first. If accepted to the program you will meet with some very excellent doctors who will do the prep work with you before you see Dr. Gores. One of these people is Dr. Lasordo, and he is an excellent hepatoligist and surgeon. When you eventually meet with Dr. Gores he will spend all the time you require to talk with him. He sets aside the entire Wednesday for liver patients in the transplant program for ample time to talk. I know personally he works a 70 to 80 hour week with all the other activities he’s involved with.
Also as Marion mentioned Dr. Lowy has looked at your records, so progress is being made.
I was in the same position as you are right now, anxious and waiting for information and hoping for good news. Don’t give up yet and keep on pushing ahead.
Raye
rowena….I understand your frustrations. Many of us, on this board, have had similar experiences. I can’t advise you on what to do but, I would like to share some thoughts with the hope that others will do the same.
The way I understand it:
you have already consulted with Dr. Fisher at Stanford
and Dr. Gores from the Mayo Clinic.
Dr. Gores is willing to speak with your oncologist (something. I would consider)
Dr. Lowy, UC San Diego has already taken a look at your records
Dr. Lenz, USC, you are awaiting a response
Dr. Venook, UCSF, you are awaiting a response
Do you have a copy of the original records you had mailed to Dr. Lowy?
Did your visit with Stanford entail another set of testings? If yes, then you might want to wait for those records. If no, then the original records should be sufficient enough to take along to either, Dr. Venook or Dr. Lenz.
Rowena, you should be proud of yourself. You are gathering many opinions from several outstanding physicians familiar with this cancer. I suppose that I would take the first appointment available from either, Dr. Lenz or, from Dr. Venook. I don’t have the answer to this but, it might be worth finding out: are either Dr. Lenz or Dr. Venook willing to look at your records without a personal visit from you? Hang in there. You are nearing the point of clarification. Others may come along and share some of their thoughts, also.
Thinking of you and sending all my best wishes your way,
MarionMarions
I made several calls today and found that Stanford had not returned my slides to Monterey and they would be mailing me my records in 5 days. I requested these on the 17th of Dec. I made a call to Dr. Venook’s office to see when I might be scheduled for an appointment. They took the message but no one called me back. I, also, called Dr. Lenz’s office about making an appointment and talked to Lee and he was to call me back. I am trying to keep from getting stressed but time is passing and I need to make a change soon. I can really feel some change in my liver. It was a week ago today that I called Dr. Venook’s office and I still do not have an appointment.
I will call both Dr. Venook’s office and Dr. Lenz’s office again tomorrow and see if I can get someone to help me. I don’t know why it takes so long for them to return my calls. Hopefully, I can fax my records to Dr. Lenz tomorrow and get in to see him. I wonder which one is better. Dr. Venook is closer to where I live, so that is why I called him first. After reading all the good things about Dr. Lenz, I am wondering if I made the right choice. I can always go back to my oncologist but he just has not had the experience with the bile duct cancer.rowena…good luck. The retrieving of records can be a really time consuming. I hope that you will be successful. You might also want to ask Dr. Venook’s team whether they are able to request the records from Stanford on your behalf. You may also want to inquire whether Stanford can transfer the records to Dr. Venook that is of course only, if you can get through by phone. And, try to ask for duplicate copies so that you always have your own set.
Best wishes,
MarionYou’re most welcome Rowena. I’m as curious as you are about the lack of information that should have been provided to you.
Raye.
I found your response most interesting. I had not heard of Dr. Hemming. I am wondering why Dr. Lowy from UCSD did not mention him to me when I sent him my reports and talked to him. In order for him to review my records, I, also, had to send him a check for his time ($250.00). If I do not like what I hear from Dr. Venook, I will get in touch with Dr. Hemming. Thank you for bringing him to my attention.
RowenaMarions,
I contacted Dr. Venook on Monday and talked to a Jose and then Robert, Dr. Venook’s “go between” called me Wednesday (1-6-10) and told me they had sent me a new patient packet and some of the things I needed to bring. I faxed my reports to them that afternoon. I will call them the first thing on Monday and will let you know. I am having a hard time reaching the records’ department at Stanford or any department for that matter. I need to know if they will send me my records and what they did with my slides. I will call Monterey, also, and see if they sent them back like they said they would. When I call, I am told to wait for the next available person who never shows up.
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