Brandon has been diagnosed with invasive squamous cell carcinoma which is considered rare. Based on the CT scans we did at MD Anderson the cancer has gone into the abdominal wall and into the stomach. We have finally heard back from MD Anderson on the plan for Brandon at this stage.
MD Anderson is recommending surgery to remove all or as much of the cancer as possible with the following details:
1. There will be two surgeons performing surgery on Brandon at MD Anderson. One is Dr. Merrick Ross and his team from the dermatology oncology dept and the other is Dr. Naruhiko Ikoma and his team which specializes in robotics and gastric surgeries.
2. Dr Ross will perform additional clearing of the tumors between the skin and the stomach including the abdominal wall. That means the area they already removed will need to be larger because they found more cancer remaining.
3. Dr Ikoma will be performing a robotic partial gastrectomy. This means that they will remove the cancer in the stomach using robotics and will have to remove a portion of the stomach.
Needless to say this is a big surgery and could have major lifestyle changes for Brandon. Surgery is scheduled for April 17th. We are going back to MD Anderson next Thursday and Friday to meet with both teams and to get a better understanding of how long Brandon will be in the hospital, how long to expect for recovery, possible complications, diet after surgery, impact on his osteoporosis and scoliosis, his muscle tone for the future in his trunk, any additional treatments needed, recurrence of this type of cancer and any other thing I can think of.
So I ask for your help with this blog. I am trying to make a list of questions to ask both doctors next week and things to consider. If you have had cancer treatment in the past or know of someone you think I should ask please let me know of anything you think we should consider or ask. If you have experience with any stomach surgery including bariatric surgery please let me know anything you think I need to ask or anything to consider. Or if you have any medical expertise and just want to throw a few questions or things to think about to me feel free. I am taking all of them now before we head down this path.
I am in the learning mode stage so we can make the best decisions for Brandon and know the impact for the future. Thank you everyone who has reached out to me and all your support.
Leah
Friday, March 29, 2019
Thursday, March 21, 2019
Cancer Sucks
I think we can all agree. Cancer sucks. Today I am trying to process this new foreign diagnosis for Brandon. I have to admit this is a hard one. Brandon received the results back from his cat scan with contrast from MD Anderson. It appears that the cancer has spread to the abdominal wall and into the stomach. We don't have a treatment plan yet. Brandon's doctor at MD Anderson (Dr. Merrick Ross) is recommending a consult with a second surgeon. They have asked us to come back to MD Anderson for a consult. The normal treatment for this type of cancer is surgically removing the cancer. We will want to weigh any quality of life concerns with the surgery options and hope we can come up with a good treatment plan.
A little light on the results is that the cancer has not spread to other areas. However, we wont know if it has spread to any lymph nodes until there is biopsy or if/when he has surgery.
This is not going to be a long blog today because I really don't have anything else I can say. Except Cancer Sucks. Thank you everyone for your outreach and support. It means a lot to us.
Hug your loved ones when you can and all you can.
Leah
A little light on the results is that the cancer has not spread to other areas. However, we wont know if it has spread to any lymph nodes until there is biopsy or if/when he has surgery.
This is not going to be a long blog today because I really don't have anything else I can say. Except Cancer Sucks. Thank you everyone for your outreach and support. It means a lot to us.
Hug your loved ones when you can and all you can.
Leah
Wednesday, March 13, 2019
A Blessing in Disguise
I have to say the last few weeks have been a shock for me and Brandon and one that completely came unexpected. We are going through the motions of dealing with the new diagnosis, but I don't think it has completely sunk in.
So here it is as I know it for now. Brandon has been having problems with his g-tube site for several years. Thinking back about the g-tube site and infections, his site has not been the same for at least 2 -3 years and perhaps longer. We have been to many doctors complaining about the redness of the site, the fact that nothing seemed to work to completely heal the site and one infection after another. I think at least 10 to 15 doctors have seen it, including the Mayo. All of them have said it looks like a normal infection, superficial and then would tell us medication should be used to treat the site. But prior to the redness of the site, Brandon was always the poster child for a perfect g-tube site on his stomach. It was always looking like normal skin, no issues and easy to change the g-tube/mic-key. Several years ago the site started to have issues leading to removing the mic-key to help heal the infection in Janurary. The site continued to get worse even after the g-tube was removed, more tissue continued to grow outside the outer skin. It became so bad that before surgery just to touch it would result in blood or infection shooting out if the site. In February we had surgery to remove the infection and clean up the site. Brandon was left with a very large and deep hole in his abdomen and we began using a wound vac to begin the healing process. While we were in the hospital the surgeon came to our room to inform us that portions of the infected area that he removed had come back as invasive squamous cell carcinoma. The cancer was in the abdominal wall and went down the g-tube site from the skin down to the stomach. The tumor thickness is at least 16.5 mm which is very large. They also found carcinoma in the deep margins that lead down to the stomach. We know that not all the cancer was removed from this very deep section of the wound and stopped short of the stomach. It is possible the cancer continued into the stomach.
Squamous cell carcinoma runs in our family mainly due to exposure to the sun. I have had it, both my brothers have had it, my father had it, my aunt had it. I have had it more than once. I know what it looks like. Brandon's red areas did not look like this. The skin cancers my family has had all stayed in the top layers of the skin and were well contained to the area of exposure. I think most people with this type of cancer believe that is typical for this cancer. It is. Brandon's cancer is rare. It is rare to go into the deeper tissue and even more rare to possibly go into an organ. We know we did not get all the cancer removed when he had the surgery because we didn't know it was cancer. The surgeons all said that this type of cancer likes to attach infected open sites and areas where there is scar tissue.
Luckily through a friend (thank you) I sent the pathology report to MD Anderson and they responded quickly with they want to review the actual sample. I was a little surprised because they normally don't do this type of cancer unless it is invasive. I am glad we did. They received the lab samples from Seton. Yesterday they confirmed that this was indeed invasive squamous cell carcinoma. They stated they want to see where it has spread and if the cancer is now in the lymph nodes, abdominal muscle and/or stomach. I also asked them to check a previous surgical site that has been inflamed for a few months.
We really don't know too much about this cancer's impact on Brandon's health at this point until we know how far it has spread. We are hoping that it is contained similar to what you would see with a regular skin cancer and that the next surgery will be relatively simple. But we are also prepared that it may be a much more extensive surgery. If the cancer has spread in the deeper tissue, the lymph nodes or an organ this type of cancer can be more difficult to treat. I feel like that is down the road and I am concentrating on what we know right now.
Next Monday we head back to MD Anderson and on Tuesday Brandon will have a comprehensive CT scan of the abdomen under sedation. After they review the CT scan and talk to the Austin surgeon, MD Anderson will develop a surgical plan for Brandon. I was feeling a little guilty about taking Brandon to MD Anderson as this could be fairly simple, but I talked to his integral medicine doctor today about the plan from MD Anderson and she told me there really isn't the expertise for this kind of cancer and for Brandon's multiple complications here in Austin and MD Anderson was the best place for treatment. Brandon and I are both feeling good about our decisions. MD Anderson wants to do this surgery within 1 month.
I have to say through all of this Brandon once again came through as the hero in this picture. People have poked in the wound area which is so large, stuffed materials in the wound, pulled hairs, removed surgical tape from around the site and talked about surgeries and treatments. Through all of that Brandon is going with the flow and asking when is the next gig for his band. Even though we were so tired after our visit on Tuesday he sang a little on the way home. He did stay up all night Monday and therefore I stayed up all night Monday night because he said he was worried. But he still handled the day like a pro and when he was totally bored he took a nap.
So we ask you all to say a little prayer, think positive thoughts and/or cross your fingers whatever your choice. We will take it all in hopes the tests they run next week don't show too much spread. A few of you have asked how I am doing. I admit it. I am stressed, but trying to take a little Leah time and rest as much as I can. Brandon is home each night for the next few weeks while he is attached to the wound vac machine, as we go through these tests and the next treatment. I have asked for a little extra help from a few friends to keep up with it all. Thank you all for your words of encouragement and keeping up with Brandon as we go through the latest. Life really does take twists and turns along the way. Our road has taken another big curve but all worth it for Brandon's health. If we hadn't done this surgery we would not have found this cancer and now seek treatment. A blessing in disguise.
We leave you with pictures from "Off the Beatle Path" on KOOP Radio. Brandon was able to go to the show on Monday before we headed to MD Anderson. We won a quilt made by one of the employees of KOOP radio and auctioned off during their fundraiser. Brandon was so happy. He wants it on his bed. Great timing. More later.
Leah
So here it is as I know it for now. Brandon has been having problems with his g-tube site for several years. Thinking back about the g-tube site and infections, his site has not been the same for at least 2 -3 years and perhaps longer. We have been to many doctors complaining about the redness of the site, the fact that nothing seemed to work to completely heal the site and one infection after another. I think at least 10 to 15 doctors have seen it, including the Mayo. All of them have said it looks like a normal infection, superficial and then would tell us medication should be used to treat the site. But prior to the redness of the site, Brandon was always the poster child for a perfect g-tube site on his stomach. It was always looking like normal skin, no issues and easy to change the g-tube/mic-key. Several years ago the site started to have issues leading to removing the mic-key to help heal the infection in Janurary. The site continued to get worse even after the g-tube was removed, more tissue continued to grow outside the outer skin. It became so bad that before surgery just to touch it would result in blood or infection shooting out if the site. In February we had surgery to remove the infection and clean up the site. Brandon was left with a very large and deep hole in his abdomen and we began using a wound vac to begin the healing process. While we were in the hospital the surgeon came to our room to inform us that portions of the infected area that he removed had come back as invasive squamous cell carcinoma. The cancer was in the abdominal wall and went down the g-tube site from the skin down to the stomach. The tumor thickness is at least 16.5 mm which is very large. They also found carcinoma in the deep margins that lead down to the stomach. We know that not all the cancer was removed from this very deep section of the wound and stopped short of the stomach. It is possible the cancer continued into the stomach.
Squamous cell carcinoma runs in our family mainly due to exposure to the sun. I have had it, both my brothers have had it, my father had it, my aunt had it. I have had it more than once. I know what it looks like. Brandon's red areas did not look like this. The skin cancers my family has had all stayed in the top layers of the skin and were well contained to the area of exposure. I think most people with this type of cancer believe that is typical for this cancer. It is. Brandon's cancer is rare. It is rare to go into the deeper tissue and even more rare to possibly go into an organ. We know we did not get all the cancer removed when he had the surgery because we didn't know it was cancer. The surgeons all said that this type of cancer likes to attach infected open sites and areas where there is scar tissue.
Luckily through a friend (thank you) I sent the pathology report to MD Anderson and they responded quickly with they want to review the actual sample. I was a little surprised because they normally don't do this type of cancer unless it is invasive. I am glad we did. They received the lab samples from Seton. Yesterday they confirmed that this was indeed invasive squamous cell carcinoma. They stated they want to see where it has spread and if the cancer is now in the lymph nodes, abdominal muscle and/or stomach. I also asked them to check a previous surgical site that has been inflamed for a few months.
We really don't know too much about this cancer's impact on Brandon's health at this point until we know how far it has spread. We are hoping that it is contained similar to what you would see with a regular skin cancer and that the next surgery will be relatively simple. But we are also prepared that it may be a much more extensive surgery. If the cancer has spread in the deeper tissue, the lymph nodes or an organ this type of cancer can be more difficult to treat. I feel like that is down the road and I am concentrating on what we know right now.
Next Monday we head back to MD Anderson and on Tuesday Brandon will have a comprehensive CT scan of the abdomen under sedation. After they review the CT scan and talk to the Austin surgeon, MD Anderson will develop a surgical plan for Brandon. I was feeling a little guilty about taking Brandon to MD Anderson as this could be fairly simple, but I talked to his integral medicine doctor today about the plan from MD Anderson and she told me there really isn't the expertise for this kind of cancer and for Brandon's multiple complications here in Austin and MD Anderson was the best place for treatment. Brandon and I are both feeling good about our decisions. MD Anderson wants to do this surgery within 1 month.
I have to say through all of this Brandon once again came through as the hero in this picture. People have poked in the wound area which is so large, stuffed materials in the wound, pulled hairs, removed surgical tape from around the site and talked about surgeries and treatments. Through all of that Brandon is going with the flow and asking when is the next gig for his band. Even though we were so tired after our visit on Tuesday he sang a little on the way home. He did stay up all night Monday and therefore I stayed up all night Monday night because he said he was worried. But he still handled the day like a pro and when he was totally bored he took a nap.
So we ask you all to say a little prayer, think positive thoughts and/or cross your fingers whatever your choice. We will take it all in hopes the tests they run next week don't show too much spread. A few of you have asked how I am doing. I admit it. I am stressed, but trying to take a little Leah time and rest as much as I can. Brandon is home each night for the next few weeks while he is attached to the wound vac machine, as we go through these tests and the next treatment. I have asked for a little extra help from a few friends to keep up with it all. Thank you all for your words of encouragement and keeping up with Brandon as we go through the latest. Life really does take twists and turns along the way. Our road has taken another big curve but all worth it for Brandon's health. If we hadn't done this surgery we would not have found this cancer and now seek treatment. A blessing in disguise.
We leave you with pictures from "Off the Beatle Path" on KOOP Radio. Brandon was able to go to the show on Monday before we headed to MD Anderson. We won a quilt made by one of the employees of KOOP radio and auctioned off during their fundraiser. Brandon was so happy. He wants it on his bed. Great timing. More later.
Leah
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