Going with our gut
We had a very positive meeting today with Dr. Carlson, our oncologist. I’m not sure if it is because he has so much experience dealing with crisis, but he had an amazing demeanor. He started the conversation by asking us to list all the questions we had so he was sure he answered them in our discussion. By the way he watched us when we talked, I could tell he did this not only so he could answer our questions, but also to gauge our head space. He was calm, confident, patient, and personable. I wish there were more doctors like him.
“I expect you to do well,” he told us to start, “this is the opposite of what we thought when you first came to us. You have some hard decisions to make but that is because you are in a good position.”
We talked percentages, therapies, side effects, studies, and doctors. He actually went one layer deeper and explained to us the personalities of some of the doctors who run some of the higher profile studies. Net-net he feels like for every study we could find that points to Jul’s condition being more concerning than pure DCIS, he could find an equivalent that shows it is not. As Bry commented on the last post, there is a great deal of uncertainty in these studies and it is hard to tell where Jul fits. Additionally, there is margin of error associated with the pathology report. The pathologists could have missed sections of microinvasion. Alternatively, many women diagnosed with pure DCIS treated only with surgery who have never had a recurrence could actually have had undetected invasive components to their cancers.
So it comes down to how risk adverse we want to be. Dr. Carlson told us there were four possible paths to pursue. The first, text book recommendation, would be do to nothing more. Many doctors believe that treating Jul’s cancer with a mastectomy is the only treatment needed. The second path is adding Tamoxifen as part of her treatment, the third is adding chemo and the fourth is adding both Tamoxifen and chemo.
While nice to hear that most doctor’s would recommend no further treatment, stopping with just a mastectomy feels too optimistic. Tamoxifen seems like a good bet. It is a five year treatment with relatively few side effects and will decrease her chance of recurrence in half. Chemo is the harder choice. It can have bad long-term side effects and is quite uncomfortable. It will decrease her chance of recurrence by one third. The chemo treatment he would prescribe would be four cycles, one treatment every two weeks. So it comes back to those studies. If you take the most optimistic study, the benefit you get from chemo is offset by the damage you do. If you take the most pessimistic study, then it could add some benefit. If you take the middle road, her disease-free survival rate goes from 91% to 94% with chemo alone, 91% to 95.5% with Tamoxifen alone and 91% to 97% with chemo and Tamoxifen. She would gain 1.5 percentage points by adding chemo to the Tamoxifen. Chemo for 1.5 damn percentage points.
In the end, Dr. Carlson felt this was not a decision we would be able to make objectively. He advised us to go with our gut and he told us there wouldn’t be a wrong decision. When Jul asked Dr. Carlson what he would tell his niece to do, he laughed and said that he loved his niece very much. He also said that his niece was an oncology nurse so she would probably tell him what to do. Then he confidently looked Jul in the eye and told her he would tell his niece to take Tamoxifen.
We are very encouraged by his optimism and are in the process of looking for our guts.