Breast Cancer Chronicles: So The Breast Cancer Has Spread To My Lung

12/18/2012 A couple of weeks into breast cancer radiation therapy, the radiation oncologist thought he saw something in the weekly chest X-ray. I was sent for a CT scan with contrast. Later in the day, I received a call from the radiation oncologist and was told that instead of one hilar lymph node involved, there were now three, but that was fine, he was taking my case to the Tumor Board to discuss my case, as if that would make everything better. He also wanted to see me the next day.

In all my years as a patient advocate, I have always insisted that any client faced with a life-threatening illness have someone accompany them to their visits with their doctors, so when none of my children could go with me, I panicked. But let me back this up a little. I do not like this doctor and I have not trusted him from the very beginning. Back in medical school, I am quite sure that he graduated with honors in the class titled, 'GOD 101'. Some doctors take that course, but thankfully, many others skip it. From the beginning, he treated me as if I was an idiot, and I did not like it.

My older daughter said, "Mom, Ruth is a nurse. She will go with you. Ask her." My daughter knows Ruth. Ruth ran the local GO Team during the election and I had just met her. But I called Ruth and she said, "Let's go". I picked her up, we went to the radiation center and I had my radiation treatment. The nurse said that the doctor would see me, and Ruth and I entered his office. He began by saying that the tumor board had met and that they had decided on my course of treatment. Sorry, Doctor, but I make my own decisions based on fact and supporting information. I told him to pull the CT scan up on the computer- I needed to see it. He was surprised, and maybe because Ruth was taking notes on a legal pad, he did as I asked.

Immediately, I saw only two lymph nodes (he had said there were three) in the hilar region lit up, but I pointed to a spot IN the lung that looked like it was attached to the heart. It wasn't, I knew, but that is where it is. I said, "That is NOT a lymph node. That is a mass and I can tell from looking at it that there is no way that a biopsy can be done." The doctor told me it was not a mass, it was a nodule. I know that the only difference between a nodule and a mass is the size and he was right. The 'nodule' is still under 3 centimeters. Once it grows to 3 cm, it will be called a 'mass'. He said they could actually get a biopsy, but that it would involve a major surgery. I am not willing to do that because I know what that brightly lit nodule is. It is breast cancer in the lung.

So, the tumor board decided that I should proceed with the radiation and have another CT in 2 months. Told him that was unacceptable, that the CT would be in one month. It was agreed.

I got home and put in a call to my primary oncologist. He was at the Tumor Board. I wanted his take. He said there was much discussion and many varied opinions, so I gave him mine. I told him that this was breast cancer spread to the lung. He said that every physician there agreed that it is. I told him that my best bet at this point, as I understand it, is hormonal therapy called Arimidex. He said that many there stated that this is my "only bet" to slow this metastasis.

Then I said something that I thought would shock him. I thought he might disagree. I told him that I wanted to stop the radiation immediately and start the Arimidex. Instead of disagreeing, he told me that several of the physicians there, including him, voted for that course of treatment, especially because continuing the radiation to the breast would compromise later use of radiation to the lung, if it becomes necessary. Let's see...Breast cancer reoccurrence to the breast, in which case I have a mastectomy, or reducing the size of a lung tumor so that I can breathe? Hmmm! The radiation oncologist did not give me that little piece of information. While it may not qualify as an outright lie, it is a lie of omission.

The radiation therapy discontinued that day, I started the Arimidex and will have a CT scan on January 10th.

This is MY dance with cancer! I will lead in this dance. I will decide where and when and how Cancer and I are going to dance! I will question everything, but I will trust my primary oncologist. HE has earned my trust. He told me from the beginning that he would never lie to me, and he hasn't. He also told me the other day, "Jillian, any doctor who questions your intelligence and analysis? Well, he is a fool."

Doctors are not God! They are highly trained, some better than others, some smarter than others. There are those who are not so smart and there are some who believe that they run the show. When you encounter a physician who refuses to be questioned or challenged, run away as quickly as you can. It is YOUR responsibility to act as your own patient advocate, to control your own dance.

I have had some incredible doctors! I have had my share of the not so great ones, too.

Just so you know. Social Security Disability (SSDI) has a list of what they call Compassionate Allowances. Please see the website page for a complete list: http://www.ssa.gov/compassionateallowances/

They will process claims for Social Security disability and Medicare in days, not the usual months that it normally takes. Breast cancer with distant metastases is one of the conditions on the list.

And so, my dance continues. It will, until the day the music dies...

My mother, Jillian Barclay, died broke and in debt. She received a notice for her appeal from Social Security about one month before she died and right at the beginning of in-home hospice.