After elucidating their current status, Nancy and Dan MacMillan provide parting advice to patients and caregivers who encounter a diagnosis of small cell lung cancer.
PUBLISHED May 17, 2019
Nancy MacMillan: At this point I am three weeks postradiation. What I have looked forward to now is on April 15, I believe I’ll start back on Tagrisso [osimertinib] for my non-small cell lung cancer. I’m not quite sure what’s really going on at this point, and we will have to wait a little bit longer for some of the swelling and inflammation to go down. But on May 13, I will have a CT [computed tomography] scan with contrast as well as a brain MRI [magnetic resonance imaging], because small cell cancer is very aggressive, and one of the places that the metastases might become a problem is in the brain. So I have opted not to go for a prophylactic allover brain radiation that I was offered, but I am going to go to have more brain MRIs from here on out to make sure that if anything happens that we are able to start radiation on metastases that might be in my brain.
At this point immunotherapy is not one of the options I had, but who knows what research out there might provide that option for me. From the get-go, the beginning, I received targeted drug therapy, which was one of the last options that they used to choose. But for me in this situation, the Tarceva [erlotinib] that I took really came before the chemotherapy and radiation I receive now that I am a patient with small cell lung cancer.
But I am open to any therapies that become available. I must admit I did pass on the clinical trial for the prophylactic whole-brain radiation after doing my own little bit of research and discussion with a few folks. And obviously I’m not sure if I’m canceled out forever on that. It might be that I would have to that if it becomes necessary. But my husband and I discussed much more and are just waiting until this next scan in May to see if I’m able to hold my own for a while with the radiation and the chemotherapy.
Dan MacMillan: One of the things, as I mentioned earlier, is that Nancy’s first oncologist — who was absolutely terrific and who sent us to her second oncologist — told us right from the beginning that this may be like trying to treat a chronic disease, and we don’t know what’s going to come in the future. We had no idea that small cell lung cancer was coming our way and what kind of treatment it would require. But so far I feel that we’ve been guided in the right direction every step of the way by the wonderful physicians who have treated her, spent so much time explaining her options, and tried to include her and me into the decisions.
Nancy MacMillan: And the children.We had conference calls.
Dan MacMillan: Yes, into the decisions about what her treatment would be. And for anybody out there who’s undergoing a similar situation, I surely hope you have access to that kind of help, because that’s absolutely critical every step of the way.
If I have any words of wisdom to give to somebody in a similar situation about being a caregiver for someone like this, I would say get informed. Try to learn as much as you can about the disease so that you can be included in what’s going on, what treatments are available, what treatments are being given, which are not, and why. And try to anticipate as much as you can what the patient is going to experience. Because nobody will ever figure it out, but you just have to be ready for anything and everything. And as I said earlier, we don’t know where we’re going, but we like where we’ve been, and hopefully we’ll continue going in that direction for as long as we can.
Nancy MacMillan: I as a patient would say to someone who’s newly diagnosed that you have to get over the shock and awe of it, but you also have to realize that it is OK to ask questions. And if your friends want to talk about it with you, that’s something that’s more beneficial to you. Of course, making it your whole identity is not want you want because, as my daughter told me at the beginning of this, “Mom, you still have a life to live.” So live your life as much as you can.