Can't Get Additional Treatment Options - Anyone Else Had This Problem?

Hi - Here's my background. Mother-in-law was diagnosed with stage IV stomach cancer in Nov. 2007. One week later she began chemo treatment to shrink the the tumor and have it removed surgically. After one round of chemo that included Xeloda 2-x-daily with infusions and a drip - Eloxatin and Ellence cancer had gone through all layers of the stomach though the tumor was not larger. after some infections and missing treatments she started the third round last week and we found that the cancer has spread to the lymph.

We begged our oncologist to contact MD Anderson for an appointment and were told that they will not see us until her treatment with her current oncologist is complete. really? Spoke with a very nice patient referral counselor at Sloan Kettering and he seemed to suggest they would not see us and directed us to Moffitt Cancer Center since it was closer to where she lives (Clearwater). Called Moffitt, spoke with a person who was totally bothered to take our information and said they would not see us until we provide them with all medical records-not a problem but didnt even tell me where to have them sent. Have tried the online self referrals to MD Anderson but have not heard from them.

Do we need a doctor contact? I have no problem doing all the leg work to get records where ever they need to go but feel like I am being turned away from seeking other treatment options. Like her case is hopeless. I'll do whatever we need to do but feel like I'm running into so many walls that I must be doing something wrong or maybe I shouldn't try. I just can't figure this all out and feel like we are really running out of time to do something.

I appreciate any comments.

thank you all for your bravery and inspirational messages here.

 

Mary

NYC, NY

Dear Mary, The information that they gave you about MD Anderson is false. We travelled from Georgia to MDAnderson for my husband's surgery in 2005. The oncologist at MD Anderson works WITH our oncologist here in Atlanta. We see Dr. Ajani at MD Anderson. You'll see his name come up again and again when it comes to stomach cancer research in the US. We called MD Anderson ourselves for an appointment. It usually takes about 10 to 14 days to get the first appointment. My husband is also part of MD Anderson's patient network for the newly diagnosed. Even if you aren't a patient at MDA you can call the patient network and be put in touch with a survivor of the same cancer. Keep trying! If you get someone cranky on the phone, ask for a different operator. Almost all of the workers at the big cancer hospitals are angels and your family deserves good and understanding treatment. The doctors work for YOU! Take care, Amy

Hi Amy -

Thank you so much for this information. I spoke with MDAnderson today. it does look like we need to communicate more clearly with our oncologist about the treatment he is providing because he does basically need to turn her over to MD Anderson to start care with them. And I do want them to work together. I feel much better after your email and the call to them. Thank you again Amy.  Sincerely, Mary

I am in UK. My Dad was diagnosd with Stage IV Stomach cancer December 2007. Initial investigation suggested they could operate so a planned gasrectomy went ahead on Jan 14th. It seems the cancer had attached itself to liver and pancreas so surgeon did -by-pass whilst in there to allow Dad to eat and drink normally for as long as possible.

After his initial recovery we saw oncologist last week who told us the chemo on offer would not cure this cancer just give him a few months longer. After much soul searching he decided not to go down the chemo route as ironically he feels absolutely fine. This it seems is the reason why so many are diagnosed so late. He wants to enjoy a quality rather than quantity of life.

At this point there seems nowhere to go and nothing to do. I have read and looked at so many sites uk and world wide but I am intrigued by the MD Anderson discussion. Can you advise whether we have anywhere to go with our situation as it is?

 

Thank you in advance of your response(s)

 

Alice