Thursday, January 29, 2009: We met with Ron's Medical Oncologist again today to bring him up to speed, but he was already up to speed! He had already spoken at length to the ENT Surgeon at UW-Madison about Ron. He said the surgeon asked him if he thought Ron could handle the surgery, and he said that if ANYONE could, it would definitely be Ron! He marvels at Ron's strength and attitude every time we see him. He also told us that the other doctors on the team do not feel that Ron is a candidate for chemotherapy after this surgery, but he wants to give him at least four treatments anyway. We said YES, you be a rebel! We definitely want it. We are trying to buy as much time as we can.
The Oncologist felt that the cancer would come back, possibly even within a few weeks or months again, but we know that we are doing what we have to do at this time. And Ron is clear that even knowing the cancer will come back, he is still willing to go through this huge life-changing surgery, so that is what we will do. The doctor did confirm that this cancer is poorly differentiated, which means it spreads much faster than "normal" cancer. We are also dealing with the Perineural Invasion, which increases the chance of recurrence. So the odds are against us, but we will fight it to the end!
UW-Madison had also mentioned to us that Ron should probably apply for disability, and we had never thought of that. He is retiring from farming now, and is selling his shares to his nephews to give us some income, but we will be applying for disability also. The MO agreed that it was a good idea, and didn't think Ron would have any problems qualifying. So we are gearing up for Monday. Ron has been deciding what he would like to eat on Sunday, and we finally decided I would make "Thanksgiving" dinner, turkey and all the trimmings. And it will be a day of thanks: thankful that Ron is still here, thankful that we have a wonderful family, and wonderful friends, and thankful that we found our wonderful team at UW-Madison.
We will also be thankful for seeing all of Ron's friends on Saturday night at the Zenda Tap! Don't forget to come and wish him well!
In Honor of My Husband, Ron
Showing posts with label Perineural Invasion. Show all posts
Showing posts with label Perineural Invasion. Show all posts
Thursday, January 29, 2009
Wednesday, December 24, 2008
Update on the future...
Monday, December 22: We had two appointments today. The first was with the RO up at St. Luke's. We were pleasantly surprised that he said the Cyberknife would be an option for Ron. He told Ron that his best chance for survival would be a second salvage surgery. His odds were 80% for the surgery. If he chooses not to do the surgery, he could have 5 Cyberknife treatments. Those odds he placed at about 60%. Ron's third option would be more chemo and IMRT radiation, with about 30% chance of survival. He was not talking about a cure, because since this is Ron's third bout with Oral cancer in three years, it most likely will come back, but we just can't say when. It could be right away again, or we could have a few years cancer free. We were offered a tour to see the Cyberknife and how it works, but we were very close to our other appointment time, so we had to leave. We left there feeling much more positive.
Our second appointment was with the surgeon who did Ron's last surgery. If you have been reading this blog for a while, you know that I was not really fond of that surgeon, but I must say he was much nicer this time. This was our difficult appointment. He explained a second salvage surgery would be much more aggressive. Basically, the entire lower right quarter of Ron's mouth would be removed and rebuilt, using hip bone, a metal plate, and tissue from the hip area. He also said that he would have to remove at least half of what remains of Ron's tongue. This cancer is below his tongue, on the floor of the mouth, and it wraps around the right side of the tongue. There is also the possibility that he would have to remove the tongue completely, called a glossectomy. This brought up the discussion of "quality vs. quantity". That is where we are now. Ron must decide what he is willing to live with. I told him that I would be there no matter what. If he has to have a trach and a PEG tube for the rest of his life, I have no problem taking care of them. I think what is bothering Ron the most is the chance that he would not be able to eat again, especially if they remove his tongue. The surgeon did say that he had one patient who could eat some things after their glossectomy. I told Ron that he would be the second! If anyone could do it, he could. And he hates the PEG tube! He really does not want one again, but I told him that we could get a different kind, one that would not irritate so much and get caught on his clothing.
So this is where we are right now. We ended up cancelling the other appointments to get him ready for the PORT, since chemo will not start until after another surgery and his recovery from that. The surgeon is going to consult with the plastic surgeon and the Oncologist and get back to Ron with a surgical plan, and he can then decide to go for it or not. The surgery would be within the next two weeks. We are happy that we at least have the option of the Cyberknife. I really believe that Ron will go for the surgery again, though. He just wants to live, and that will give him the best shot. It will be a different life, but it will be LIFE and that is all that matters to us. We are headed down to Missouri tomorrow for the holidays with my sister's family again. We are leaving all of this cancer stuff behind for a few days! We wish all of you a very Merry Christmas and Happy New Year! May 2009 be kind to us all.
Also, thank you so much for the comments. We really enjoy and appreciate them!
Our second appointment was with the surgeon who did Ron's last surgery. If you have been reading this blog for a while, you know that I was not really fond of that surgeon, but I must say he was much nicer this time. This was our difficult appointment. He explained a second salvage surgery would be much more aggressive. Basically, the entire lower right quarter of Ron's mouth would be removed and rebuilt, using hip bone, a metal plate, and tissue from the hip area. He also said that he would have to remove at least half of what remains of Ron's tongue. This cancer is below his tongue, on the floor of the mouth, and it wraps around the right side of the tongue. There is also the possibility that he would have to remove the tongue completely, called a glossectomy. This brought up the discussion of "quality vs. quantity". That is where we are now. Ron must decide what he is willing to live with. I told him that I would be there no matter what. If he has to have a trach and a PEG tube for the rest of his life, I have no problem taking care of them. I think what is bothering Ron the most is the chance that he would not be able to eat again, especially if they remove his tongue. The surgeon did say that he had one patient who could eat some things after their glossectomy. I told Ron that he would be the second! If anyone could do it, he could. And he hates the PEG tube! He really does not want one again, but I told him that we could get a different kind, one that would not irritate so much and get caught on his clothing.
So this is where we are right now. We ended up cancelling the other appointments to get him ready for the PORT, since chemo will not start until after another surgery and his recovery from that. The surgeon is going to consult with the plastic surgeon and the Oncologist and get back to Ron with a surgical plan, and he can then decide to go for it or not. The surgery would be within the next two weeks. We are happy that we at least have the option of the Cyberknife. I really believe that Ron will go for the surgery again, though. He just wants to live, and that will give him the best shot. It will be a different life, but it will be LIFE and that is all that matters to us. We are headed down to Missouri tomorrow for the holidays with my sister's family again. We are leaving all of this cancer stuff behind for a few days! We wish all of you a very Merry Christmas and Happy New Year! May 2009 be kind to us all.
Also, thank you so much for the comments. We really enjoy and appreciate them!
Tuesday, December 2, 2008
Cautiously optimistic...
Tuesday, December 2, 2008. It's Ron's 56th birthday today! Guess what he got to do? Have a colonoscopy. What a lucky guy! We were given the choice between having it on his birthday or the day after, in which case he would have been doing the "prep" on his birthday, and as you all probably know, that is the worst part of the procedure. At least now he can have dinner and have a piece of apple pie (his favorite) for dessert tonight. He has gained another 5 pounds since my last post! We went down to Missouri to see my sister and her family over Thanksgiving and she stuffed him like a Christmas goose. Now to catch everyone up on what's been happening since the last post. On Tuesday, November 18, Ron saw the surgeon. He could not see any areas of concern, and his feeling was that the PET scan was done too soon after surgery to be accurate. He told Ron to go ahead and have the other tests done and come back to see him after that. Our next appointment was on November 21st with a Gastroenterologist, to take Ron's history and schedule the colonoscopy. He also did not think there would be cancer found. On November 25th, Ron had his Thyroid scan done.
Wednesday, November 26th was our big meeting with the Radiation Oncologist. It was good to see him again, after 2 years. He gave Ron a thorough exam, and did find a small nodule under his tongue, and had me come and feel where it was. That was the only area that concerned him. He said that he would not agree to re-radiate until we were sure the cancer was back. He told Ron to go back to the surgeon so he could do a biopsy of the area. Only with positive results would he agree to radiation, and he mentioned that it might be a different type than IMRT. If the results of the biopsy are negative, he wants to wait and repeat the PET in January. He also mentioned that Ron has Perineural Invasion, or PNI. I didn't ask anything about it at the time, but have started to search to find out what that means. From what I understand so far, it acts as a scaffold for the cancer cells to spread. We left the RO's office feeling much more positive about the future. There were now three doctors that thought the PET results would be inaccurate so soon after the surgery. Oh, how we hope they are right. Right after the appointment we drove for 8 hours down to my sister's, and had a wonderful time visiting with all of them until Sunday, the 30th, when we drove back home.
Monday, December 1. Ron had an appointment with the chemotherapy doctor today. He said the Thyroid scan was negative. Thank God! One less area to worry about. He agreed with the RO that the surgeon should biopsy the spot under the tongue. Right after this appointment, we had an appointment with the surgeon. He agreed that the nodule was suspicious, but will not do a needle biopsy. Instead, Ron will have outpatient surgery next Monday, where the surgeon will remove the entire nodule if possible, to send to pathology. He said that he is not as certain that Ron cannot be cured of this cancer again, and said that he thought the oncologist was being too "bleak." We just don't know what to think at this point. Ron is very positive about being able to beat this again. I need to draw on some of that strength of his! Today, December 2, Ron had his colonoscopy. The doctor came out and told me that no cancer was found! He did have some small pockets of diverticulosis, but it shouldn't be a concern. Ron can't eat nuts or popcorn anymore anyway without teeth. He suggested more fiber, so I will pick up some supplements, since he also has trouble eating raw fruits and vegetables. So now we wait until Monday, the 8th, to find out the results of the biopsy. Keep praying, please. So far things are looking up!
Wednesday, November 26th was our big meeting with the Radiation Oncologist. It was good to see him again, after 2 years. He gave Ron a thorough exam, and did find a small nodule under his tongue, and had me come and feel where it was. That was the only area that concerned him. He said that he would not agree to re-radiate until we were sure the cancer was back. He told Ron to go back to the surgeon so he could do a biopsy of the area. Only with positive results would he agree to radiation, and he mentioned that it might be a different type than IMRT. If the results of the biopsy are negative, he wants to wait and repeat the PET in January. He also mentioned that Ron has Perineural Invasion, or PNI. I didn't ask anything about it at the time, but have started to search to find out what that means. From what I understand so far, it acts as a scaffold for the cancer cells to spread. We left the RO's office feeling much more positive about the future. There were now three doctors that thought the PET results would be inaccurate so soon after the surgery. Oh, how we hope they are right. Right after the appointment we drove for 8 hours down to my sister's, and had a wonderful time visiting with all of them until Sunday, the 30th, when we drove back home.
Monday, December 1. Ron had an appointment with the chemotherapy doctor today. He said the Thyroid scan was negative. Thank God! One less area to worry about. He agreed with the RO that the surgeon should biopsy the spot under the tongue. Right after this appointment, we had an appointment with the surgeon. He agreed that the nodule was suspicious, but will not do a needle biopsy. Instead, Ron will have outpatient surgery next Monday, where the surgeon will remove the entire nodule if possible, to send to pathology. He said that he is not as certain that Ron cannot be cured of this cancer again, and said that he thought the oncologist was being too "bleak." We just don't know what to think at this point. Ron is very positive about being able to beat this again. I need to draw on some of that strength of his! Today, December 2, Ron had his colonoscopy. The doctor came out and told me that no cancer was found! He did have some small pockets of diverticulosis, but it shouldn't be a concern. Ron can't eat nuts or popcorn anymore anyway without teeth. He suggested more fiber, so I will pick up some supplements, since he also has trouble eating raw fruits and vegetables. So now we wait until Monday, the 8th, to find out the results of the biopsy. Keep praying, please. So far things are looking up!
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