Thursday, April 10, 2008

Q and A With My Oncologist

I sent the following eight questions to my oncologist in an email and she was good enough to call me up and answer them one by one. I took notes on my laptop (I guess law school was good for something--taught me how to take notes really fast!) and have modified them somewhat for sake of clarity and privacy when posting them here. I sent her these questions in response to her phone call a couple of nights ago when she told me that although the nodules in my lungs (one in each) did not light up on the PET scan, they are most likely cancer and I would have to decide what to do now. I decided to wait for 3 months and then talk to a radiologist and a lung surgeon (same one who did my last lung surgery) about getting these things out of me. This is not exactly what she said--as I said above, I made some changes and left some things out.

1) Are the nodules in my lungs cancer? What factors influence the answer?

Probably but they are not changing [growing] by leaps and bounds. The only way we can tell [if they are cancer] is by removing them. They are too small for a needle biopsy. They are too much on the periphery for a broncoscopy. The type of tumor you have does not always light up on PET so we can't exclude cancer because of the negative PET.

2) Why wait 3 months to address them? Won't waiting increase the chance of metastasis?

This is personal preference. We can cut 'em out but most likely they will come back in other areas. Pretty much equal [waiting versus not waiting]. You have plenty of lung capacity left and young healthy people don't have a problem [healing from lung surgery]. Not easy to tell if waiting will increase metastasis. These could be tiny primaries [so not metastasis from the big tumor I have removed in September].

3) Are these nodules metastasized from the big tumor?

They could be tiny primaries. Waiting is not going to increase chance of metastasis. We don't know if they are secondary or primary.

4) If they are secondary tumors, then why is it that I have 3 secondary tumors all in my lungs only and nothing in the rest of my body?

Chemo was an attempt to treat everything--the rest of the body where there may be cancer that is so small we can't see it. Chemo did not (if they are cancer) affect these. I [the oncologist] am more willing to use more local methods to treat these small things like ablation or surgery. If we went with surgery, they would just take wedges out (segments rather than lobes). Radiologists specialize in ablation, and in your case they would insert a needle with an umbrella-like (the inside of the umbrella) aperture into the tumor and then freeze or burn it (cauterize it) to kill it.

5) Does the fact that metastasis is limited to my lungs affect the way it should be treated?

Because it is limited to your lungs, I am more willing to use local methods to treat it.

6) Perhaps it is now time for me to seek a clinical trial. Do you know of any that I would qualify for?

I suggest you check with MD Anderson [in Houston, Texas] to see if they sent off the EGFR mutation. MD Anderson might have a clinical trial using Tarciva (a pill), which blocks the EGFR pathway.

7) What is your opinion of the immunization trials where a vaccine-type reagent is made from a tumor to use in attempts to instruct the cells to reject it? I know that type of treatment requires tumor cells, so if I were going to pursue that treatment it would have to be done before any cauterization is undertaken.

There is good data with vaccine treatment from Glaxo Smith Kline. They need tumor tissue because they test the tumor to see if it excretes what they will give you the vaccine against. Most likely the vaccine will not help by itself. The thought is there is some kind of tolerance that blocks people's immune system and don't let the lymphocytes kill the tumor. You have no tumors more than one cm in size which will limit the trials you are eligible for. (I do not remember exactly how she put it, but the oncologist pretty much said she did not have much hope for this type of therapy.)

8) You seemed really calm on the phone. Is that because this is not too serious or because you are very used to having to deliver this type of news?

If these are cancer, they are not very big and are not the cause of your cough or shortness of breath (my shortness of breath is due to the fact that my lung capacity was reduced when the two lower lobes of my right lung were removed in September 2007!). We have some time to make a decision on what to do. Both the surgeon and the radiologist are willing to do it if you are willing to do it...

I do not recommend radiation therapy for you. Radiation is not a one stop shop; you have to go back. Also, your tumors are so small. It would be better in your case to do surgery or ablation. Lungs are more difficult to do radiation on because lungs move.

I should add that the oncologist did emphasize (I think I noted it once above) that the cancer will be back. Once these tumors/nodules are removed, I should expect to see others eventually. The fact that I have good lung capacity is good (from her perspective) because it means that they can open me up and whittle on my lungs a few more times. She did not say that--I am saying that because that is one of my worst fears and it is coming true. Now that I have cancer, the allopaths (The Medical Establishment) have their hooks in me because their treatments are the best/most effectively proven. I have no choice but to submit to their poking and probing and cutting. And I will have to be grateful for it since it will keep me alive to be with my darling boy a bit longer and a bit longer and a bit longer...

So now I have enlisted the help of my FIL. He is finding out for me if my tumor was ever tested by MD Anderson for EGFR and if not, if it can be. Once we know that, we can perhaps pursue this clinical trial. Or not, if it is not right for me. If we do a clinical trial which involves a lot of traveling, we're going to have to take the house off the market. Did I mention the house went on the market yesterday?

1 comment:

Anonymous said...

I've been checking in on your blog and, of course, hoped for better news for you. I am glad the growths are so small and there is time to choose a plan carefully.

My Aunt recently went to MD Anderson and it was very impressive. Everyone she worked with was so professional, kind and willing to answer any and all questions.

Best of luck to you,