I'm Staci Cornelius, and I'm 55 years old. I live in Birmingham, Alabama with my husband Henry and our 12 year old daughter. He went to see his local doctor last year, in August, for something totally unrelated to cancer. And while there, the doctor suggested that it was time to do a repeat PSA because he hadn't had one in about nine or 10 years. And the PSA showed a very high level of 45, which alarmed my husband, not so much the local doctor, but he did refer him to a local urologist, both of whom had been friends of my husband. And he repeated the PSA and it was essentially the same. So a biopsy was recommended, and the biopsy unfortunately showed cancer. The biopsy report was devastating for us, because of the number of cores that were positive and some other findings. So we had multiple appointments, both with the original urologist and then found a urologist at UAB, University of Alabama, Birmingham, an academic medical center, and that's where the biopsy was performed.
The urologist there suggested radiation as a first line of treatment, but because of my husband's history with his mom having been diagnosed with multiple myeloma several decades earlier, he decided that we really needed to seek another opinion and go to a cancer center in Houston. So we headed to MD Anderson.
The biopsy was done at UAB and I went with him. He knew, I think right away that it was cancer, because the urologist there said that he could see a very large tumor. I think he called it a big mamma-jamma tumor, and he thought it was outside of the prostate capsule. We were surpri... Or at least I was surprised by the diagnosis. I had gone into it thinking that elevated PSA could be related to something else. I think we probably should have known at that point that with the PSA that high, he was going to be diagnosed with prostate cancer. And of course, the biopsy showed that that was the case.
There were some features that were identified in the biopsy. I don't really remember what the terminology is, but we knew from those features that this was going to be serious, because of the extent of the cancer that was found in his prostate and the urologist that ran the biopsy could see that it was extended beyond the capsule. So that point, I don't even think we knew what the staging was, but we knew it was going to be a high risk type of cancer. And that's when Henry decided that we were absolutely going to seek out an opinion at a center of excellence, and MD Anderson being a quick, direct plane ride away from Birmingham, that's where we went first. We had friends who had been there for other types of cancer treatment. They showed us the ropes, where to stay, what to do, and we got there.
We met with both a genito-urinary surgeon and a radiation oncologist. The surgeon said that based on what the imaging had shown and the biopsy results, that he thought surgery was reasonable, he didn't advocate it really for it one way or the other. The UAB team had suggested that radiation therapy would be his first course of treatment. So while we were at MD Anderson, we also saw the radiation oncologist, who was female. And I just asked her point blank, "If this were your husband, what would you do?" The surgeon we have seen has told us that surgery is an option for him, even though it is outside of the prostate. And she said, "My husband is a surgeon. And he would say, I'm going to have radiation and I'm not going to let anybody operate on me, but I guarantee you I would make the decision and he would have surgery."
And when she said that, I knew at that point that surgery was the road we were going to go down, as the first course of treatment. As you can imagine, in the beginning, it was a whirlwind. I didn't expect him to be diagnosed with cancer, let alone Stage 4 cancer that was outside the prostate gland. And so, information was coming at us fast and furious. We were getting a lot of different opinions and we were receiving information about the side effects, what the surgery could result in, including urinary incontinence and potentially bowel incontinence and erectile dysfunction, sexual dysfunction.
I remember talking to one of the doctors at MD Anderson, and I can't remember whether it was a surgeon or the radiation oncologist, but they asked us, "What is your goal? What is your objective from this treatment?" And I said, "I want Henry to live. I want him to be at our dinner table every night. I want him to be helping our daughter with her homework. I want him to see her graduate from high school. I want him to see her graduate from college. I want him to walk her down the aisle."
So what might or might not happen in the bedroom in a year or two is really not the most important thing. The most important thing for me is that he is with us and he's living life with us. Initially, I had a bias for staying at home and getting all of his treatment there in Birmingham so it would disrupt our life as little as possible and impact our 12 year old daughter as little as possible. I wanted her life to be normal and to not really feel the stress of this diagnosis and the treatment that he was going to have to go to.
But as soon as we saw the doctors at MD Anderson, and even just walking around the facility, seeing that all they do day in, day out every day is treat cancer patients. And the surgeon that we talk to, all he does is operate for prostate cancer and mostly high risk, aggressive prostate cancer like Henry's. And even the radiation oncologist, she treats prostate cancer. She doesn't cross over and do radiation for breast cancer patients. They have another group that does that. So seeing how specialized they were and the volume of patients that they see for his specific type of cancer day in, day out, and that's all they did, I was absolutely convinced that's where he was going to have his treatment. Fortunately, we have direct flights from Birmingham to Houston, and that made it easier than if we had gone anywhere else outside of Birmingham, but it was still disruptive.
I thankfully have a mother who takes wonderful care of our daughter when we can't be there, and we knew it was going to be about a week away from home for the surgery. The surgeon was able to get Henry on the schedule within about two weeks of our visit. And we knew from the staging at that point that moving with some urgency was important. So we immediately got it scheduled on September 21st, and we got back home and told our daughter that's what we were going to do. She was sad about the fact that we were going to be leaving her for a week, and we knew that logistically, it would be more complicated than being at UAB, in our backyard.
We knew that afterward he would be discharged from the hospital the day after surgery, that he would have a catheter and that we would have to manage it, that he would have an abdominal drain. In fact, I don't think we even learned about the abdominal drain until the morning of surgery and that we were going to have to be dealing with that. And as it turned out, he had to have that for 44 days. But they, after surgery, taught us very quickly how to manage those things, and we were able to stay for a couple of extra nights there, at MD Anderson in the hotel attached the facility, so that we could make sure he didn't have any problems. And then we got on a plane and flew home.
And then fortunately, we had doctors there at UAB, who were already on board and were coordinating with MD Anderson and cooperating his care so we could see them for follow-up. He was able to have the drain removed at UAB and they worked in conjunction with MD Anderson. They also removed the catheter at UAB. So really, we were very fortunate to have a good team in place, back at home, to support the follow-up that was needed after the surgery. Henry's surgery at MD Anderson was September 21st, and I was there at the hospital waiting. We met with the doctor before he went into the OR and the doctor told us that he had reserved the OR for three hours. During the procedure, I sat in the waiting room with a lot of other family members of different patients, and I spent a lot of time on my iPad, FaceTiming my daughter who was worried and wanted to be reassured that everything was going okay.
As it turned out, the procedure took about six hours. So it was very stressful and I was of course, worried about what was found and what the outcome was going to be. The surgeon did come and talk to me after the procedure and at Henry's insistence and with his agreement, he let me record what he said, because Henry wasn't going to have the opportunity to hear it directly. And so, he said some things that gave us an indication that maybe he had not gotten all the cancer. He said that there was one area that he cut as much as he could, but he wanted to save some of the nerves. And so, in order to do that, it might not be a clear margin. And so, we had that information and we were somewhat prepared for what the PATH report was going to show, but just somewhat prepared.
And on Columbus Day weekend, it was a beautiful weekend in Birmingham. Henry and I were sitting outside Sunday morning after church, talking when his cell phone pinged. And he looked at it and he said, "They've just added something to my MD Anderson portal." So he immediately opened up the app and his pathology report was there for us to read. And to say it was shocking is an understatement. We both were in tears, because there were positive margins. And not only that, but the imaging from pre-op did not give a clear indication that he was going to have cancer in his lymph nodes. There was some indication in the meeting with the surgeon that there might be two positive lymph nodes, but it was a little bit equivocal. The pathology report, however, showed that of the 27 lymph nodes that the doctor removed, eight of them were positive.
There were also some other bad features that we had read about and knew what it might mean for him going forward. So reading that, sitting outside on a bench in our front yard on Sunday of Columbus weekend without being able to talk to anybody in the medical field about it, was devastating. We had been educating ourselves online. We had found AnCan, which had been a great support, and we had been reading medical literature articles and we had heard about and read about Anthony D'Amico at Dana-Farber. And Henry pulled up a video that he and his colleagues, Mark Pomerantz and another doctor had put together in 2019. And they were talking about advanced prostate cancer and how things were trending toward very specialized treatment for aggressive, advanced prostate cancer, a very personalized care.
And Henry said, "What are we going to do?" And I said, "Well, you need to contact those doctors. Just do it. Just email them and see what they have to say. We don't have anything to lose." So he got on his iPad right, there outside, and started plugging away trying to find their email addresses. He was able to find them, and he emailed both Mark Pomerantz and Anthony D'Amico that day. Dr D'Amico responded within 15 minutes on that Sunday, we didn't have to wait until MD Anderson opened on Tuesday, after Columbus Day holiday to get more information. He responded and copied members of his team and said, "I would love to treat you. I would love for you to come up here to Boston." Henry had attached the PATH report and gone over some of what was so concerning to us that was shown and other background information from his prior course of treatment and staging.
And his response, as I said, was almost instantaneous. He copied his team and said, "They will get you set up on Monday." And they did. And so, that was how we started the next part of our journey, because we knew his treatment was going to continue from there. It was becoming very clear to us over the course of his treatment and staging, that there are urologists, there are genito-urinary specialists, and there are genito-urinary medical oncologists. There are those that operate. There are those that do radiation oncology, and everybody doesn't tell you the exact same thing or recommend the exact same course of treatment. We were both really struck by that video we watched with Dr D'Amico and Dr Pomerantz and how dialed in they were to advanced, aggressive prostate cancer and the personalized individual treatment plan that needed to be put in place for someone who was Staged as Henry was, at four.
And so, we wanted to be wherever it was best for Henry to receive the best treatment. Boston, we knew was not going to be easy. It was going to be considerably more difficult and complicated than even MD Anderson. There's no direct flight from Birmingham to Boston. So he was going to have a long trip. Dr D'Amico ultimately recommended 40 sessions of radiation. That covered two months of treatment. It was going to start in January, when the weather in Boston is not ideal and continue into February where again, it's still very cold and snowy and he might have trouble flying in and out, because we wanted him to come home some and spend some time with us and not be up in Boston for the entire two months of treatment.
But at the end of the day, we knew after coming up here and meeting with Dr D'Amico and Dr. Pomerantz that this was the place that he needed to be, where his treatment could be specifically focused on his diagnosis and what his features were with the doctors who knew the best, what his treatment should be. So knowing that the surgery had not removed all of the cancer and knowing that after surgery, his PSA six weeks postop was still at a four, when it should have gone down to zero if all the cancer had been removed. Dr Pomerantz, who was the medical part of the puzzle, decided that he would wait a few more weeks before starting Henry on some different prescription medication. And he knew he had a colleague that he had trained with or been educated with previously who was at UAB, who could help direct the course of treatment so that we wouldn't have to come back and forth to Boston for that part of the treatment.
So we knew that Henry would start on the ADT to get his testosterone down to zero. And of course, we talked about what those potential side effects would be. He was still recovering from the surgery. Again, it was extensive, removing 27 lymph nodes. So we knew that he was going to have a testosterone level of zero once he started this medication, which was going to cause fatigue and other problems. And so, we started with him knowing that was going to be the first next step, was getting the prescription medication on board. And Henry would continue on that, hoping to get his PSA down to an undetectable level. And then after that happened, he would come back to Boston for the eight week course of radiation. So we went back to Birmingham and Dr Pomerantz coordinated with Henry's medical oncologist at UAB, Dr. Basu. He first started on androgen deprivation therapy that required him to be injected and the injections caused side effects, including some really bad swelling and big, really large lumps at the injection sites.
And he had two, so they were on his abdomen. And Henry being Henry, read up some more about something that could replace the injectable ADT. And I can't remember if we had a Zoom meeting with Dr Pomerantz, but we didn't come back up here. We got to meet with Dr Pomerantz by phone or by Zoom. And Henry suggested, "How about this other medication in place of the injectables, because the injections caused this." And Dr Pomerantz said, "That's not a bad idea." They talked about it. He said, "I'm not entirely confident that your insurance is going to cover that, but it's worthwhile. Let's give it a shot." And so, he ordered that, the insurance covered it all, almost immediately. And so, he started on the oral medication instead of continuing on the injections, which it cost him some pain and problems. And I don't remember how long it was after starting the medications that his PSA dropped to an undetectable level, but it did.
And it was fairly precipitous. It happened pretty quickly. Whereas before starting the medication, it was persistent at a four. Once the medication was on board, he dropped to an undetectable level very quickly, which was something we were very happy about. And Dr Pomerantz was very happy about it, as was Dr Basu. He did start having some side effects, but they were really manageable at first. He now has more severe hot flashes, but at first, the hot flashes weren't too bad. The fatigue didn't bother him too much. That has gotten worse as time has gone on that medication. So he's continued on all of that through the radiation treatment and up until today, and I believe Dr Pomerantz is going to keep him on that for at least another year. But we're learning how to manage the side effects. We sleep with three large, very noisy box fans in our room, two of which are pointed at him to help with the night sweats and hot flashes, and are learning every day some new things to help us cope with what the treatment does to his body.
Well, it is really important when the diagnosis is fresh and you are reeling from the news that your loved one has cancer, that you have to educate yourself and advocate for yourself. You have to not just accept what the doctor or the first doctor whose office you walk into says as the best line of treatment. You really should consider, even if it's going to be a little difficult and complicating for your life, to go and get a second opinion. If we had gone with the first recommendation of radiation, he never could have then gone back if it did recur and get the surgery. The only option for surgery was to do that on the front end. So if we had gone with the first recommendation to just get radiation, surgery would've never been an option. And those metastatic lymph nodes that were in his body would still be there.
The radiation could have killed it, but we don't know. And so, now we know they were removed. And it's really important to educate yourself. We called friends and family to tell them about this at the beginning. And as the diagnosis and the staging was unfolding, our world kept getting rocked because it kept getting worse and worse. And we talked to folks and a lot of people told us that they had a friend or a family member who had been through treatment for prostate cancer and that Henry should connect with them. And it would be great, because they would be able to talk to Henry and tell him, "It's all going to be okay. I went through this and I'm done and it's over." And he did connect with several folks through that way and learned when he did that, that their cancer wasn't stage four when they started and when they were first diagnosed.
And that was really frustrating for him. And so, both of us getting online and reading more about it, I stumbled onto AnCan one day. I knew he was just having a hard time with that diagnosis and what it might mean for our life together and for our family. And I was having a very hard time. And I knew that there had to be more answers out there, that we had to be able to get more information to help ourselves along this road. And somehow, I just luckily stumbled on Ancan. I registered him for it using my email address. So I still get the notifications of when the meetings are. And I got on their website and I called a couple of the founders and talk to them directly. And they were very encouraging, they were very knowledgeable, and they knew more about aggressive, advanced prostate cancer than the local people that we had been connected with through friends and family.
And it was important for us to broaden our horizon and reach out to people who had a more similar experience to Henry and not something like Stage 5 or 6. So that was really important and I would encourage everybody to seek out a second opinion, go to a center of excellence, even if it means that it's going to cost you a little bit of money on the front end to buy a plane ticket, even if it is going to be a burden on your family. It is so important to educate yourself and keep asking questions and make sure that you're on the right path for treatment, based on your diagnosis and what you've been told and what you've learned about your diagnosis. Looking back over the past year, I don't have any regrets. I feel like we did everything right. And again, Henry was the driving force at first, having gone through cancer diagnosis and treatment with his own mother and not accepting the first recommendation from the local hospital and doctors in Birmingham and expanding our horizons.
He is the one that insisted we at least get another opinion from a center of excellence. And again, I'm so glad that we did. I don't regret that for a minute. The surgery was tough. It was certainly tougher on him than me, but I'm not trained in the medical field. I did not know what to do with a catheter. I did not know what to do with an abdominal wound drain and a bag, and he had that bag for 44 days. But we figured it out and it was tough, and I think it was really hard on our daughter at that phase, the recovery from surgery. When we got back to Birmingham from the surgery, I don't think she was fully prepared for what he would look like, what he would be dealing with in terms of the abdominal drain and the catheter. And that really upset her and shook her.
But he handled it like a champ, and we got through it. Then when we made the decision that Dana-Farmer was the best place for him to be for radiation, again, we knew it was going to be hard on our family. He was going to be away from us for the better part of two months, in a city that has bad, tough winters, and he's not used to that, being from the south. But I told him when he started getting cold feet, no pun intended, that he could do anything for two months and it was the best place for him, and he needed to just pull himself up by his bootstraps and get through those two months of radiation, which ended up being a really great experience for him. He came to love the city of Boston. He's a huge Red Sox fan now. He's found some of the best local restaurants.
He made great friends with his radiation technicians, who he loves and communicates with to this day. And so, I have absolutely no regrets looking back. Absolutely, there were ups and downs and there were lots of tears and lots of hard times. We did a lot of FaceTiming when he was in Boston, and I was taking care of the fort back home in Birmingham, but it was what he needed to do. His PSA has remained at an undetectable level now, for almost a year. I think it went down to undetectable level sometime in November after he started the medication. And it's remained there. And so, we really know that he has a long life to live ahead of him. And it's because we sought out the treatment that we did and we asked questions and we read, and we didn't stop until we found the places where he needed to go.