John Symes is the CEO and Founder of Patient Talk. It was his experience of going through the breast cancer journey with his wife that is the inspiration for Patient Talk. He talks about his immediate reaction to the news and how he made every effort to help his wife filter through all of the information recognizing the final decisions for treatment must be the woman’s prerogative. Most importantly, he speaks to the importance of communication and how hearing other women’s stories helped guide his wife through her journey and how that became the foundation of Patient Talk mission.
My name is John Symes. I'm the CEO and founder of Patient Talk.
When my wife was diagnosed with breast cancer five years ago at the age of 48, she came home one night and she had had a mammogram, and she told me that they found something and she was going to have to go in for a needle core biopsy.
As a husband and also a father of three, it's a gut shock. It's something that you have to reflect on very, very quickly, and then you have to immediately go into support mode because I don't care who it is that's diagnosed with breast cancer, they're going to need some support to get them through that early phase of trying to figure out what to do as far as treatment is concerned.
The needle core biopsy is not fun. My wife handled it like a pro, but the tough part about the biopsy is that you're going to have to wait. We were lucky enough that we only had to wait three days to find out whether or not it was truly a cancer, but those three days are really, really tough. It's a whole other thing to go through the biopsy stage and then to finally get the result that in fact it is cancer. It's something that's going to have to be treated. A lot of decisions are going to have to be made. And tons and tons of opinions are beginning to be flying your wife’s way.
The one thing I would suggest to anybody who goes through breast cancer whether they're married or they have a significant other or they have a parent or they have a best friend, going to your initial meetings, particularly with the breast surgeon, there is so much information thrown at you. My wife's really smart and I think 10% of what the breast surgeon said actually sunk in with her.
Emotions are riding so high; anxiety levels are incredibly high. The patients themselves they just want to get this taken care of.
As the caregiver, I was doing my best to act as a sounding board for her. You have to tread lightly. As much as we all like to say as a married couple we make our decisions together, it's really not a decision at the end of the day that is made collectively. It's a decision that's made by the woman.
You can help in ways like saying why don't we go get a second opinion. Let's hear what somebody else has to say. I also think you'll find that most doctors are very open to the idea of getting a second opinion. They want their patients to have fully vetted the options that are available to them, and they really want their patients committed to whatever decision that they make. So as much as her breast surgeon was completely recommending lumpectomy, we ended up going to another doctor in the area and he made a really interesting comment. He immediately said you can always go in and have the lumpectomy and then send it to pathology. If the margins are clean, then you've made the right decision. He says you can always go back and have the mastectomy if you want it. And so ultimately that was the decision that my wife made.
From the time of the positive mammogram, scheduling the biopsy, getting a confirmation, going to the meeting with the breast surgeon, getting a second opinion, to being at the outpatient surgical center, having that lumpectomy it was two weeks. People take months and months and months to think about various types of surgeries. When you get a diagnosis of breast cancer, it's both a physical thing that you have to deal with but it is an emotional roller coaster and it's something that as a caregiver you have to appreciate how quickly the woman wants to move. You better get on that train because if you don't get on that train whatever you can provide as far as help, as far as filtering opinions, helping to come to a decision, if you're not on that train, you're left behind.
We got her to the surgical center around I think around 9 o'clock. I think she had her surgery around one. The surgery was I think about 90 minutes. She woke up three hours later. Her breast surgeon who's just the most amazing compassionate woman you could ever find was there with her when she woke up. My sister-in-law came out to be with me. My father-in-law was there. But I was the only one allowed to go back after surgery to be with my wife and it was very emotional. She was very emotional.
When your breast surgeon says to you I think we got it; I didn't find anything in the lymph nodes; you're going to do great. So that's a huge relief.
I think I might have taken the whole radiation treatment for my wife a little too lightly. I went to every appointment with her up to surgery. I offered to go to the first appointment for radiation but she was like, you know it's radiation. I can do this. Subsequently, I found out that those first few days of radiation were really hard for her.
So you have to moderate yourself from a standpoint of understanding that your wife is just not going to be feeling the same way that she did pre-diagnosis. You've got to be patient with that. You have to understand that it's going to take a little time not only for her to recover physically but also to recover mentally from it. It's exhausting mentally.
We thought we had handled our kids pretty well until actually the final day of my wife's radiation and we were sitting around the dinner table and it was kind of a big high. It's like treatment is over. She sat around the dinner table and she said, guys, everybody give me the high five radiation is over, right? And my 15 year-old son out of nowhere said does that mean the cancer's gone, mom? We kind of sat back and we just said what? Because the truth of the matter is that when you have a lumpectomy the cancer's gone. At that point the radiation is precautionary. Well, our son was in his third semester of high school. He's always been a really solid student and quite frankly you get caught up in what's going on, not only my wife just dealing with it herself but, as a husband, your focus skews a little bit more towards your wife and not as much as maybe focusing on the kids and we just missed it. He didn't get it when we said that when the lumpectomy after the cancer was gone. And subsequently it was the worst semester of grades he ever got.
We inadvertently dropped the ball in respects to properly communicating what was going on. You're making the effort to bring your kids into the tent of the breast cancer journey but anytime you're a parent and you feel like you've let your kid down it's hard, it's hard, it's hard, and it hit us pretty good for a few days just in trying to deal with the fact that we thought we had let him down.
You know what, the thing that's nice about kids; they're pretty resilient; he snapped back the next semester.
I think support can be defined in small measurements. I'm not even sure how at the end of the day you can define if you were successful; if you provided everything that you would have hoped to. I think you need to make the effort and as long as the effort is made I think that your loved one appreciates it. As long as you're there, as long as you are supportive. As long as you recognize that they're going through something tough and that you're not there to make it tougher. That can be the biggest mistake I think anybody can make as a caregiver is maybe overcompensating too much. One thing you don't want to do is add any stress to the situation. You want to try to take that balloon and take as much air out of it as possible and make things normal and I think particularly for kids it's really important that they see their parents are moving forward.
The best advice that I could give as a caregiver is to be there. And it's not just to be there as the husband. It's to be there as the father. It's to be there as a friend. It's to be there as a blocker and tackler.
As a caregiver, it's important to get involved and it's important to get involved early. You can be part of the decision making process. At the end of the day when it comes to breast cancer it truly is your wife's decision, and I was going to support whatever decision she made. If she decided she was going to have a double mastectomy, then I was going to support that.
I'm glad that I was able to frame the discussion a little bit and that she chose a different route, which was the route that her doctors were recommending. If her doctors were recommending a double mastectomy, then that's the recommendation. You go with your doctor's recommendation. This particular case they weren't.
It's important for you to be present throughout the decision making process. It's important to note that once the decision is made and treatment is prescribed and surgery takes place that that's not the end of the ballgame and in fact in most cases it's really only the third inning and there's a lot of innings still left to play. Stay on the field. Stay in the game and I think if you stay in the game and you are there as a middleman for all sorts of things that are flying your way; that you keep your kids engaged with what's going on; that you try to create an atmosphere that there's a certain level of normalcy at the end of the day a caregiver can only do so much and luckily enough my wife was an amazing patient. She was very strong. She was very up in as much as I know there were times where she wasn't very up.
It's a long journey and it's not one that's ever completely over but you do your best to create a good atmosphere. Try and make her laugh if you can. And I think if you stay engaged and obviously you show her how much she means to you that you can make that journey an easier one for her.
The hardest thing that you have to deal with is communication. How are you going to tell your kids? How are you going to manage parents, family? It's not a cut-and-dried situation and I think it varies certainly depending on the age of the kids. If it had happened when she was in her early 40's, our kids would have been at an age where we would have had to, I think, filter a little bit more what was going on. Our youngest son was just turning 15 and our two girls were early in their college years. Every kid reacts differently. Our oldest who takes things a little bit more in stride she handled it really pretty well. My second daughter who can internalize things she kind of put herself in her bedroom and needed to work things through a bit, and she came down a couple days later and she had written a song for my wife. It's called "Fighter" and it's just a beautiful song; it's a beautiful song; and it is a powerful song and it's uplifting; and it just it just blew my wife off the map.
[daughter singing song]