Desparate and New to the Board, pls help!

My mom is 63 and was diagnosed with Stage IV EC in late April. Chest CT scan showed mets to both lungs. There are several lesions in both lungs but all under 1cm so they can't biopsy any. She had the stent placed in early May and had the PET scan the same morning. She suffered excruciating pain from the stent and was hospitalized for pain control. Her PET scan showed more mets to lymph nodes, liver, lower abdomain area etc. But the Liver CT scan did not find anything to biopsy. She was asked to see OBGYN. It looked normal to OBGYN and pap smear did not give any bad results (at least I was not notified). Then we waited for two weeks for lymph nodes biopsy which the result came back yesterday negative, despite the light up per PET scan.

We were told by her oncologist that if the mets are confirmed, she will receive chemo only. If the cancer is confined in the esophagus, she will get chemo and radiation. Now the radiation oncologist said that despite the negative result from biopsy, it does not rule out the high probability mom has disseminated disease and her treatments will be palliative, not to mention surgery. Her GI doctor convinced the radiation oncologist to give mom three weeks of radiation to control the pain since the growing tumor is pushing the stent which she is suffering day and night. We don't know what the chemo schedule or drug will be, but were told that she will have three weeks of radiation (low dosage) first, and then chemo. They are not going to give both the same time. Her radiation is schedule to start on June 24 which is three weeks away. I am DESPARATE. It has been over one month since she was dx. And we still have to wait three more weeks for any treatment.

Forgot to mention that mom has lower income insurance and her Medi-Cal is pending (disability). I was told that the disability Medi-Cal takes about 3 to 6 months to approve. Before the approval, we do not have any choice picking another oncologist or hospital for her treatment.

Any one has any suggestions on how I should talk to her Oncologists? From my reading, I see other Stage IV EC receive chemo at the same time of radiation. Is it ture?

Thank you so much for sharing.

May

Hi May,

I am so sorry to hear about what you are going through.  I know this is a very difficult time, espcecially given your medical insurance concerns.  I am not sure how lower income insurance works, or how easy it would be to choose amongst doctors in your network.  I guess I would start by doing a lot of reading online (which it seems like you are in the process of doing).  This should give you an idea of the options available, which u can present to your doctors.  I would begin by asking them how many cases like your mothers' they see per year, possible complications & quality of life, and success rates.  If you are in the los angeles area, there are some excellent doctors that I believe treat the uninsured or underinsured.  Feel free to ask me for more details if you are interested.

 I know it is difficult to wait, but it is very important that the doctors have a clear idea of what they need to treat.  Unfortuantely, this can take some time :(

 You and your mother are in my thoughts.  Stay strong, and remember that sometimes you need to speak up in order for things to get done.

 Jessica

Dear Jessica,

Thank you for the quick reply. My mom has applied the "ability to pay program" through valley connection. She can only be treated at Valley Medical Center, which is a county hospital in San Jose, Northern California area. I have been writing to the Oncologists that she is assigned to every day. We just received the negative lymph nodes biosy result yesterday, and felt that we wasted these two weeks since the doctor just won't change their mind and are not willing to treat her agressively. I will call them again this afternoon and ask for ACTIONS.

Thank you for suggestions.

May

Hi May,

I know this is an extremely frustrating and draining process.  In the event you decide you are unhappy seeking treatment in San Jose, are you and your mother open to traveling?  I know that there are other "ability to pay" programs".

 I hope that you get the answers you need TODAY so that you can start treatment!! 

~Jessica

Hi Jessica,

The possibility of traveling to get treatments is very low. I have a full time job and two young kids (9 and 4) to take care, plus a huge mortgage. My only hope is the quick approval of her Medi-Cal application, so mom could have other choices.

While mom is suffering and we are frustrated, we do recognize that life is in God's hand. In Him, nothing is impossible.

Thanks

May

On 6/3/2009 May from CA wrote:

My mom is 63 and was diagnosed with Stage IV EC in late April. Chest CT scan showed mets to both lungs. There are several lesions in both lungs but all under 1cm so they can't biopsy any. She had the stent placed in early May and had the PET scan the same morning. She suffered excruciating pain from the stent and was hospitalized for pain control. Her PET scan showed more mets to lymph nodes, liver, lower abdomain area etc. But the Liver CT scan did not find anything to biopsy. She was asked to see OBGYN. It looked normal to OBGYN and pap smear did not give any bad results (at least I was not notified). Then we waited for two weeks for lymph nodes biopsy which the result came back yesterday negative, despite the light up per PET scan.

We were told by her oncologist that if the mets are confirmed, she will receive chemo only. If the cancer is confined in the esophagus, she will get chemo and radiation. Now the radiation oncologist said that despite the negative result from biopsy, it does not rule out the high probability mom has disseminated disease and her treatments will be palliative, not to mention surgery. Her GI doctor convinced the radiation oncologist to give mom three weeks of radiation to control the pain since the growing tumor is pushing the stent which she is suffering day and night. We don't know what the chemo schedule or drug will be, but were told that she will have three weeks of radiation (low dosage) first, and then chemo. They are not going to give both the same time. Her radiation is schedule to start on June 24 which is three weeks away. I am DESPARATE. It has been over one month since she was dx. And we still have to wait three more weeks for any treatment.

Forgot to mention that mom has lower income insurance and her Medi-Cal is pending (disability). I was told that the disability Medi-Cal takes about 3 to 6 months to approve. Before the approval, we do not have any choice picking another oncologist or hospital for her treatment.

Any one has any suggestions on how I should talk to her Oncologists? From my reading, I see other Stage IV EC receive chemo at the same time of radiation. Is it ture?

Thank you so much for sharing.

May

Taker her straight to ER room you would get a better faster response.  We did the same thing for Mom and worked instead waiting for 4 weeks order.

V

Good news. After calling the doctor's office, and writing numerous emails including copying some sucessful stories of Stage IV EC treatments from this board, mom's Oncologists finally wrote me back. They both agreed that mom is going to have combined radiation and chemo which is proven to be more effective. And she is starting radiation tomorrow morning, instead of three weeks away as originally scheduled. After her radiation treatment, we will see her Medical Oncologist to talk about chemo.

Thank you for sharing and caring. GOD is listening and He is going through the path with us.

May

Glad to hear that you got some good news. Sounds like you are on the right path! Good Luck!

Payson[georgi]

Thanks! I will update tomorrow after we see the Oncologist about the action plan and I am sure I will lots of questions for you.

Take care!

May

May - I have no information to offer you but I do hope that your mother will respond positively to the treatments.  Many years ago, my grandmother had cancer and the doctors said she had 5 years to live.  She lived for another 20 and passed away at the age of 95 (not from the cancer).  I hope the treatments help your mother's pain.

Best,

Helene