I had a rough winter. If you read my last post, you know I ended up with cervical cancer. Throughout the winter and into the spring my situation seemed to get worse with every visit. For most of that time, I felt great, so it was perplexing to hear that I had not only one but two serious, life-threatening health issues that required ongoing treatment for the rest of my life. I had been doing so well. What happened? This is what happened.
Getting a second premature cancer diagnosis in less than four years is never a good thing. As I said in February, I consider my first cancer diagnosis to be a necessary evil. I was miserable, in a toxic environment and I needed to get out. Breast cancer was not the way out I would have chosen, but it worked. I made the important and necessary life changes. I got my life back in time to recognize and appreciate what I have. I felt well and was moving forward. The second cancer diagnosis erased, at least for a little while, all that good, hard work I had done. It was a punch in the gut. Not only took the wind right out of my sails, but it also capsized and sunk the boat.
Capsizing boat
The first time, four years ago, it took me less than 24 hours of wallowing in self-pity to buck up, realize I could do it and even recognize that it was just what I needed. The second time took a lot longer to process. Since I felt like I was already doing the things I needed to do, whatever lesson to be learned here seemed cruel and unusual. How can I make sense of this? In time I came to accept it and consider it a reminder that life is short, it isn’t fair, and there are no guarantees. So make the most of it.
Live life now and without regret.
I still couldn’t quite believe that this was happening. I needed major surgery, a radical hysterectomy, but then it would be over. Surgery is still a major hurdle. Not something to take lightly. Things can always go wrong, but I should be able to get through it, recover and then be back to myself, and doing the things I love and enjoy, the things that make life worth living. Instead, it got so much worse.
The surgery turned out to be a cakewalk. The first few days were hard, but I knew I was getting better. I had minimal pain, nausea but no pain. And even the nausea was virtually gone by day two. On day eight I had a follow-up appointment with my GYN oncologist. This would be the moment of truth. How much damage had this new cancer done? How far had it grown and would I need any more treatment? I was apprehensive but felt confident. I am healthy and strong. It is not possible that this cancer will be so invasive I will need more treatment. But even if the news was much worse than anticipated, at the very least I expected a definitive answer.
This would be the moment of truth. How much damage had this new cancer done? How far had it grown and would I need any more treatment? I was apprehensive but felt confident. I am healthy and strong. It is not possible that this cancer will be so invasive I will need more treatment. But even if the news was much worse than anticipated, at the very least I expected a definitive answer.
One of the things I learned through both of these cancer diagnoses is that it is better to know. There is a period of time when you first hear of your diagnosis that is just awful. The finding out part takes some time to get through. But once you become used to the information, the healing process begins. You can see and prepare for what comes next, even when it’s bad. I preferred knowing what I was dealing with instead of wondering. Through this experience, every time I went to the doctor the news worsened. But every time after a period of adjustment I would accept it, realize it could be even worse, decide how to deal with it, and move on. And then it didn’t seem so bad. Knowing was much better than the waiting and worrying.
I preferred knowing what I was dealing with instead of wondering. Through this experience, every time I went to the doctor the news worsened. But every time after a period of adjustment I would accept it, realize it could be even worse, decide how to deal with it, and move on. And then it didn’t seem so bad. Knowing was much better than the waiting and worrying.
Not only did I not receive a definitive answer on the cervix cancer, but breast cancer re-entered the conversation. The cervix cancer was borderline. My GYN oncologist said I might benefit from radiation, but he wasn’t sure so he would discuss my case with his colleagues and get back to me. Not exactly the win I was looking for. In addition to that news, there were several small foci of breast cancer cells in my uterus.
What does THAT mean?
Again my GYN oncologist wasn’t sure. He said to follow up with my medical oncologist. So here lies another problem with our health care system. You might think that cancer of the breast and cervix would have some overlap. That one oncologist would be able to put these two cancers together and come up with a long-term plan considering both. Not the case. Breast and cervical cancer require treatment by two different oncologists. One couldn’t comment on the other.
So now I have these two problems. Related and similar yet very separate. One of the hardest parts of the winter for me was forming a mindset that dealt with both of these life-threatening problems. For two long months, both of these problems nagged at me. I searched for a mentality that would allow me to move on with my life without fixating on cancer. Just when I would feel like I had a handle on one, I would remember about the other one which would erase any progress.
Neither my GYN oncologist nor my medical oncologist knew what to make of breast cancer in my uterus. My medical oncologist suggested I go to Dana Farber. So I did.
Sadly, the whole experience was awful.
The physician there said I had metastatic breast cancer and should be treated as such, which included two different medications and frequent surveillance with serum markers and imaging. She did not acknowledge the unusual circumstances of my situation, which was the whole reason I went there in the first place. My local medical oncologist knows how to treat metastatic breast cancer but is that what I have?
It is according to Dana-Farber. Of course, that information was not what I wanted to hear, and it did not sit well with me. She also delivered it so poorly; I couldn’t help but disagree. I felt like a challenge: I will prove you wrong.
She talked at me, not to me. In fact, when she asked to hear my story, as I was talking, her face was completely blank, no nodding, no expressions to indicate that she was even listening. There was no discussion, no back and forth. She had all the answers, and I should listen.
Perhaps if this opinion had been delivered in a more compassionate, empathetic way I might have listened, agreed it was appropriate and accepted it.
But it wasn’t, and I didn’t.
After I had walked out of the appointment, I knew I was never going back. She was not on my team. Maybe the advice will be the same, but I am going to look for a doctor who can talk to me and include my unique, individual circumstances in a conversation and plan.
I needed a getaway.
My brother lives in Texas, and we had never been to visit him. Now seemed like the right time. So as we were discussing plans for a trip, it occurred to me that MD Anderson, another large world renowned cancer center is in Texas.
I love penguins
Maybe I could see someone there.
My brother did a little recon and connected me with the chairman of the breast oncology division there. My experience at MD Anderson could not have been more different.
Dr. Tripathy considered my unique situation, and we had a lengthy conversation about it. He did not classify me as a typical metastatic disease patient, only recommended one medication, which I was already on, and advised against frequent surveillance.
He said the type of breast cancer I had, lobular cancer, can do what it did to me. It can be present in minuscule quantities which never end up causing clinical symptoms. The decision to treat metastatic disease is based on symptoms, which I don’t have and there is a good chance I will never have. He also said that in the absence of symptoms frequent surveillance doesn’t help. You don’t do any better, you just get treated for longer and have less quality of life.
I was elated after my appointment. I had become accustomed to getting a beat down in the doctor’s office. Finally, someone who will talk with me, understands the nuances of my situation, and has some serious cred, is telling me I’m good. This is what I thought all along but needed someone with broad medical knowledge and experience to confirm.
This sh$%storm is finally over. I can go back to my life doing the things I have been doing which are good for me and feel confident about it. I still might end up with symptomatic disease, but that has always been the case. I will be more mindful of that fact but not obsess: life is short, it isn’t fair, and there are no guarantees. So make the most of it. Live life now, well, and without regret.
This news gave me a new lease on life. I didn’t think I needed both medications and all that surveillance. It was an immense relief to hear from a respected physician that my hunch was correct. Based on conversations both with patients and friends I have the feeling others might have reacted differently to this situation. The default response is to treat. More is better. But as in my case, additional treatment may not improve outcomes and can have significant side effects. Yet, it seems people prefer treatment; doctors want to offer patients something. Nothing, except follow up every so often, feels inadequate. Psychologically it feels better to be in active treatment. This is one of the reasons many women struggle with depression and fear when they finish their breast cancer treatment. It’s hard to return to your old life without worry, doubt, and fear.
Do you agree? What would you do in my circumstances? Do you want to do everything you can, even if it might be unnecessary? Does the manner in which doctors deliver their opinion affect how likely we are to comply? Do we keep looking for doctors until we find one who tells us what we what to hear?
Any other comments? I’d love to hear from you.
