I could really use some input

[DeenaH]

Everytime I think I have my mind made up about how to proceed with treatment, something happens and my head is spinning again.

As a quick recap, since I haven't had a chance to add my signature with my particulars, I was diagnosed with stage IIIC locally advanced IDC. I did neoadjuvent chemo and had a bilateral mastectomy in September. The path report showed that I still had 18/51 cancerous lymph nodes, my originally 7cm tumor was 3.2cm, and cancer was found in the fatty tissue outside the nodes. Originally my mammory and suplaclavicular nodes were also involved. With that much cancer after chemo, there is no question that I need more treatment.

My Dr. wants to go for adding Lapatinib to Herceptin after radiation. I'm supposed to start radiation next week. I have been to Stanford and CTCA for opinions in the last couple of weeks. Stanford was no help, and CTCA is recommending more chemo followed by radiation. While at CTCA, they did a CT scan, and it showed several spots on my lungs and 1 lesion on my liver. All were too small to test (largest was 4mm), and might or might not be cancer. Since I have an aggressive cancer and it was so locally advanced, it scares me that these spots could be cancer.

While I was at CTCA, the oncologist wrote an email to Dr. Slamon since I told him I wanted his opinion before I make any decisions. Dr. Slamon recommended the Lapatinib first, then TDM1, then chemo. But, he doesn't know the whole story. He didn't know I was doing radiation first, and he knew nothing about the CT scan. I've been trying to get in to see him for over a month, and still can't nail down a date. His nurse hardly ever responds to my emails. I'd still really like to get his opinion when he has seen all of my scans and reports.

I go to a support group run by an integrative medicine Dr., and he is very knowledgeable. He says the argument for doing more chemo now makes alot of sense with the cancer left in my body. They also ran a CTC Test to see if there are cancer cells in my body. IF that number is elevated, that will make me think the cancer could spread anywhre from there. Do any of you know about this CTC test? How accurate is it?

At this point I either have to put off radiation to start new chemo. What scares me is that I have spots on my lungs and liver that we don't know what they are. Other than the radiation that is targeted to the lymph nodes, chest wall and axillary area, the only other treatment I would be geting would be Herceptin. All of the doctors I have talked to agree that Herceptin alone will not be enough.

I go to a support group that is run by an integrative medical Dr. He strongly suggests that if I decide to continue with radiation, I should push for another CT scan within 6 weeks to see if the spots have changed or grown. I am also getting the results of a CTC test that shows cancer cells in the blood.

I am so unsure about which direction to go in. If you were me, how aggressive would you want to be?

1. Do my radiation and then add Lapatinib to Herceptin if my Dr. wins the battle with the insurance company. I would want follow up CT scans to make sure the spots havent changed at all. Maybe every 4-6 weeks.

2. Try to get into a TDM1 trial.

2. Postpone radiaion and do Carboplatin/Gemzar and Herceptin. This would be done at CTCA so my healthy tissue can be spared and we get the benefit of the natuepathic Dr. to help manage my side effects, etc...

I'm just so afraid of making the wrong decision here. My gut tells me that there is more cancer in my body (and possibly spread to my lungs). I feel like I need to be aggressive. Do you think after finding out about the CT scan, my dr. would opt to be more aggressive too?

Bascially if I decide to move forward with Radiation, I will be pushing to be watched like a hawk. I want another CT scan in 4-6 weeks, I want my tumor markers taken every week, my liver function every week. I also had a CTC test run to see if cancer cells are in my blood.

Any thoughts on this huge mess? I hope this was not too difficult to follow. My thoughts are all over the place, so it's hard to get it organized into a post.