I had my meeting with my RO this morning to go over treatment. I initially thought it wouldn't be too bad but it turns out I was mistaken.
I'll be going to have 35 treatments that will last 7 weeks. That was expected. But because the radiation will be targeting my throat area he said there will be pain and discomfort typically starting the second to third week. He said eating and more specifically swallowing will become difficult and painful and recommended having a feeding tube inserted directly into my stomach prior to treatment.
He recommended it be done beforehand because 95% of people require it and if I waited until I needed it then it may take a week to get done and by that time I would have probably gone with out food and lost weight as a result. He said it was critical that I keep up my nourishment during treatment. Some normal healthy cells will suffer the damage of the radiation and nutrition will be required to minimize damage and allow them to be repaired. So ya, I wasn't expecting and am not looking forward to that.
The feeding tube insertion procedure will be outpatient and I'll be awake through it. He said it's pretty simple. Doesn't sound simple but I'll take his word for it, until my curiosity gets the best of me and I start researching it in the middle of the night.
There were a long list of other side effects or reactions mostly temporary such as fatigue, red irritated skin like a sunburn including the possibility of blistering, loss of saliva, loss of taste, loss of facial hair at the area their radiating, can't shave because it might irritate the skin and others. Because the area of radiation is more focused and on one side I shouldn't lose all my salivary glands, but I still may experience some dry mouth. The loss of taste should recover over time, but some things may permanently taste different.
Overall it's sounding like 8+ weeks (including post recovery) of hell. On the bright side he said I can expect a full recovery with this type of cancer. So, I've just got to weigh the good with the bad and if I have to go through 8+ weeks of pain and suffering to survive another 5, 10 or 15+ years it will be well worth it.
I was initially planning to try to work through the treatments maybe spending extra time working from home. But if it turns out to be as difficult and painful as he's making it sound I might just take a medical leave the last 4 weeks or whatever is necessary. I'm going to start planning for that and if it turns out I can work then I can always do that.
I've already scheduled an appointment with my dental hygienist to have a varnish applied to my teeth to protect them through the process. I'll probably be called by the RO's office to come in to do my mask and another CT scan to ensure everything is lined up properly. The mask is like a jig or guide the robot uses to target the area that needs radiation. The radiation therapy will be IMRT which is supposed to be some advanced, highly targeted, system. I've also contacted the new oncology office next to my RO's office to see when they can get me in so that I can start chemo on or around the same time. A lot of ducks to wrangle.
So if everything comes together I will probably begin therapy Tuesday, Dec. 27. At least I'll get to enjoy Christmas dinner and maybe even New Years before things start going downhill.
Monday, December 12, 2016
Friday, December 9, 2016
Second Surgery Pathology Report
My ENT spoke with me over the phone yesterday to give me the results of the pathology from my surgery. It was nice that he didn't make me drive in to get the results since it's an hour drive to get there and our conversation lasted less than 10 minutes.
He said the pathology results came back positive for squamous cell carcinoma in the lingual tonsil tissue. There were two foci of scc; one 4 mm and the other 6 mm. He said they were very small. I wanted some scale so I looked up the average size of a green pea and found it to be 7.4 mm, so these were smaller than the size of a pea. I consider the fact that they found the cancer very good news. Now the somewhat bad news.
They were near the edge of the tissue that was removed. He said if they were at the center of the mass that was removed I would be done because that would mean he had plenty of margins to be confident that no cancer cells were remaining. However, due to the fact that they're near the edge, he's pretty confident that there are some microscopic cancer cells remaining. He said that my body may take care of the remaining cancer cells during the healing process, but he can't be sure that will happen. So he's recommending moving forward with radiation and also chemotherapy albeit a mild form of chemo that has very few side effects.
Actually, I'm kind of glad he's recommending radiation and chemo. I'm not sure I would be so confident with just a surgery. Mostly because I got that stuff going on around my Adam's Apple, even though it may be related to the surgery's I've had. By doing the radiation and chemo it gives me that extra bit of confidence that we're not missing any straggling cancer cells. I want to make sure this thing is wiped out to oblivion!
Also because I recently signed up for Imerman Angels, a support network where cancer patients can speak with a mentor who's survived the same type cancer they have. I spoke with my angel about a week before surgery who's been a survivor for 15 years now. She was a nurse at the time and was very aggressive with her cancer. She told her doctor she wanted the strongest radiation and chemo because she too wanted to be 100% sure it was gone. I don't know if I want to go that far, her cancer was a little different after all and it was 16 years ago so I'm sure things have changed. But I'm happy with my plan and I think it should be thorough enough.
I've already contacted my radiation oncologist and heard back from his medical assistant. I have an appointment first thing Monday morning where we'll have a brief meeting on what they found and where and what the treatment will entail. I also let them know about my ENT's recommendation for chemo. The MA said that they have an oncologist right next door.
(I didn't realize that an oncologist is the doctor that administers chemotherapy drugs until I just looked it up now. I already have an oncologist, but I spoke with him right before my surgery and he himself went in for surgery two days after I did and told me he'll be out for six weeks. That and the fact that this new oncologist will be part of the same Medical Center, for more fluent information exchange, and right next to my radiation oncologist it just makes sense to switch.)
Anyway, the MA of my RO is going to bring my file over to the oncologist next door and have them contact me for an appointment to get everything coordinated. So, I keep moving forward.
I'm not sure how soon I'll be able to start treatment. I believe my ENT originally said two weeks after surgery and two weeks will be next Tuesday. There some setup involved and I think they need to get approval from my insurance. So I'm guessing I'll probably start in a couple weeks. I know how long appointment sometimes take so I wanted to get the ball rolling. So if I start just after Christmas I'll be done by February sometime.
I still have significant discomfort in my throat when swallowing and talking and I'm on a soft food diet until Monday. Can't wait til Monday!! All the six-dollar burger and pizza commercials are killing me. Lol.
Yesterday I stopped my pain meds, mostly because I ran out, but was pleased to discover that I didn't really need them anymore. I don't really like having to take medications if I don't have to. Not sure if there are actually people that do, but maybe so. Wouldn't surprise me.
Oh, I also checked my weight this morning and hit 150. That kinda hit me hard. My caloric intake hasn't been what it should be but I'm not beating myself up over it. I've been doing my best with recovering and all. But 150 is where it stops. With radiation and chemo coming up I'm bound to lose weight with the expected loss of appetite so my goal now is to start regain those lost pounds. I need to be aggressive with increasing my caloric intake. Just need to hold on til Monday!! ;)
He said the pathology results came back positive for squamous cell carcinoma in the lingual tonsil tissue. There were two foci of scc; one 4 mm and the other 6 mm. He said they were very small. I wanted some scale so I looked up the average size of a green pea and found it to be 7.4 mm, so these were smaller than the size of a pea. I consider the fact that they found the cancer very good news. Now the somewhat bad news.
They were near the edge of the tissue that was removed. He said if they were at the center of the mass that was removed I would be done because that would mean he had plenty of margins to be confident that no cancer cells were remaining. However, due to the fact that they're near the edge, he's pretty confident that there are some microscopic cancer cells remaining. He said that my body may take care of the remaining cancer cells during the healing process, but he can't be sure that will happen. So he's recommending moving forward with radiation and also chemotherapy albeit a mild form of chemo that has very few side effects.
Actually, I'm kind of glad he's recommending radiation and chemo. I'm not sure I would be so confident with just a surgery. Mostly because I got that stuff going on around my Adam's Apple, even though it may be related to the surgery's I've had. By doing the radiation and chemo it gives me that extra bit of confidence that we're not missing any straggling cancer cells. I want to make sure this thing is wiped out to oblivion!
Also because I recently signed up for Imerman Angels, a support network where cancer patients can speak with a mentor who's survived the same type cancer they have. I spoke with my angel about a week before surgery who's been a survivor for 15 years now. She was a nurse at the time and was very aggressive with her cancer. She told her doctor she wanted the strongest radiation and chemo because she too wanted to be 100% sure it was gone. I don't know if I want to go that far, her cancer was a little different after all and it was 16 years ago so I'm sure things have changed. But I'm happy with my plan and I think it should be thorough enough.
I've already contacted my radiation oncologist and heard back from his medical assistant. I have an appointment first thing Monday morning where we'll have a brief meeting on what they found and where and what the treatment will entail. I also let them know about my ENT's recommendation for chemo. The MA said that they have an oncologist right next door.
(I didn't realize that an oncologist is the doctor that administers chemotherapy drugs until I just looked it up now. I already have an oncologist, but I spoke with him right before my surgery and he himself went in for surgery two days after I did and told me he'll be out for six weeks. That and the fact that this new oncologist will be part of the same Medical Center, for more fluent information exchange, and right next to my radiation oncologist it just makes sense to switch.)
Anyway, the MA of my RO is going to bring my file over to the oncologist next door and have them contact me for an appointment to get everything coordinated. So, I keep moving forward.
I'm not sure how soon I'll be able to start treatment. I believe my ENT originally said two weeks after surgery and two weeks will be next Tuesday. There some setup involved and I think they need to get approval from my insurance. So I'm guessing I'll probably start in a couple weeks. I know how long appointment sometimes take so I wanted to get the ball rolling. So if I start just after Christmas I'll be done by February sometime.
I still have significant discomfort in my throat when swallowing and talking and I'm on a soft food diet until Monday. Can't wait til Monday!! All the six-dollar burger and pizza commercials are killing me. Lol.
Yesterday I stopped my pain meds, mostly because I ran out, but was pleased to discover that I didn't really need them anymore. I don't really like having to take medications if I don't have to. Not sure if there are actually people that do, but maybe so. Wouldn't surprise me.
Oh, I also checked my weight this morning and hit 150. That kinda hit me hard. My caloric intake hasn't been what it should be but I'm not beating myself up over it. I've been doing my best with recovering and all. But 150 is where it stops. With radiation and chemo coming up I'm bound to lose weight with the expected loss of appetite so my goal now is to start regain those lost pounds. I need to be aggressive with increasing my caloric intake. Just need to hold on til Monday!! ;)
Friday, December 2, 2016
HPV Immunization
I forgot to mention in my previous post that my ENT also recommended my whole family get vaccinated for HPV, minus my nine year old who should wait until he's twelve. I asked if it was really beneficial being that I've already tested positive for HPV. He told me the latest vaccine covers nine variants of HPV, seven of which can cause cancer.
What can happen is that they can team up and create a more aggressive cancer. So even though I've tested positive for it it's best that I get the vaccine to prevent infection from other strains which would increase my chances for getting a more aggressive HPV related cancer.
I also heard that there are a lot of HPV strains, with new ones being discovered all the time and asked him about that. He deferred to his intern who said that we know of around 200 strains of HPV. The vaccine covers the most common ones. Definitely worth consideration, especially for people who are not in a monogamous relationship. If only they knew about HPV and had a vaccine 30 years ago.
What can happen is that they can team up and create a more aggressive cancer. So even though I've tested positive for it it's best that I get the vaccine to prevent infection from other strains which would increase my chances for getting a more aggressive HPV related cancer.
I also heard that there are a lot of HPV strains, with new ones being discovered all the time and asked him about that. He deferred to his intern who said that we know of around 200 strains of HPV. The vaccine covers the most common ones. Definitely worth consideration, especially for people who are not in a monogamous relationship. If only they knew about HPV and had a vaccine 30 years ago.
Second Surgery - Lingual Tonsil Removal
I went in for my second surgery on Tuesday, Nov. 29th to have my lingual tonsils removed. I was scheduled to go in at 1:30 PM, then got bumped up to 12:00 PM then got pushed back to 4:00 PM. A little annoying but we rolled with it, my wife and I.
At least this time we warned them of the difficulty I had last time of getting my IV inserted. As a result of us mentioning this they prepped my arms by rolling them in warm towels and hot packs and sent in a very skilled nurse to start my IV. She was brilliant and got it the first try. I can't tell you how much of a relief this was.
I don't recall if I mentioned this previously but it took three different staff members on three different locations on my body to get my IV started last time. I almost ended up passing out. Finally the anesthesiologist got it done. Besides recovery, the worst part of the last surgery.
The staff mentioned on several occasions that I would be meeting with my doctor, which didn't happen last time, before surgery but I was prepared to insist on it if need be. I was relieved when I saw him and I knew I wouldn't have to push for it. It's always nice to be able to talk to your doctor before and after surgery. Last time his physician's assistants gave me wrong information before and after surgery. This time I was determined to get it from the horses mouth, as it were, before and after my procedure.
I wanted to make sure that when he had me on the table and before he removed my lingual tonsil that he scoped my throat and went all the way down past my Adams Apple which is where I'm experiencing the most pain and discomfort. I also wanted him to make sure that there wasn't anything going on down there. He insured me that he would. He also explained that he would be removing both lingual tonsils.
I met with my anesthesiologists one of whom said a prayer for me. They then administered the sedative that would "relax" me and before I even got to the operating room I was out.
I awoke about four hours later in my recovery room with my wife by my side. The surgery only took a couple hours. Post surgery is a lot of checking vitals and making sure everything starts working again.
The only thing I had trouble with was urination. I initially thought there was something wrong with me. I just didn't feel the need to go, but apparently that's a side effect of the anesthesia. I had to be "drained" once with a catheter. I've never had that done before and the discomfort motivated me to get on-board the pee train, sorta speak. I knew that if I tried, I could go a little, whether I felt it or not. Now all I had to do was go more often and I could keep my bladder below the point, approximately 500 ml, where they would have to catheter me.
Apart from that everything else was pretty normal. I was able to drink clear liquids, protein juice and jello, and take my medicine, with the aid of the Aloe Gloe I brought. I stayed overnight and began an advanced liquid diet the next day consisting of creme chicken soup, sherbet and pureed pears. The soup was good and I was able to finish it which was a significant accomplishment because it allowed me to get the calories needed to heal quickly. The sherbet was ok but after I saw all the sugar it had I put it aside. Nutritionally it was just not going to contribute to my healing so why bother. The pureed pears were too acidic and burned going down so I left those unfinished too. I also had one of the vegan protein drinks I had brought; another moral booster due to the calories and nutrition it provided.
In the afternoon they finally gave me the news that I could go home. I think that's always welcome news when in the hospital. Everyone was really nice and attentive there, but, as they say, there's no place like home. I heard my doctor was in the building so I asked if he could come by before I left.
He came in the room with a couple interns, I believe. I'm not sure since he didn't introduce them. He was under the impression that we had specific questions for him ready-to-go but I really just wanted to talk to him about the surgery. He seemed kind of put-off, but my wife got the ball rolling and it turned out to be a very informative conversation.
The obvious question, which he had already informed my wife who in turn informed me, was that initial pathology didn't find any squamous cells in the tonsil tissue. They'll be sending that out for a detailed analysis which should come back in five days. He said they removed an area about the size of two half-dollar coins stacked on top of each other. I was surprised at how large of an area they took out in relation to the relative little pain I felt. He also took out a ridge of suspicious tissue in my throat and that was healthy too.
He did scope my whole throat again going below my Adam's Apple and he said all the tissue looks really healthy. He said this will be my last surgery, at least for awhile unless it shows up somewhere else.
I asked him where else it could be hiding. He said either my immune system got rid of it, my body formed a cyst around it somewhere, or it's somewhere very, very small. I then asked if at such a small size could it still have spread to my lymph node? He nodded and said, "Yes.".
He also acknowledged the contribution I made in discovering the discrepancy in radiology images to his interns. He said I am the person responsible in bringing it to their attention that images were missing when transferred between databases. He let me know that they had a meeting that very morning with radiology where he had some firm words expressing his dissatisfaction with the discrepancies in the system and was determined to get it corrected. That made me feel good to think that I may have had a part in finding a flaw in a system that, once corrected, will insure people can be diagnosed more accurately.
Despite him being a little put off by having to come down without me having pre-scripted questions he ended up being very forthcoming and communicative with the conversation even venturing into the jovial realm at times. I'm sure the pumpkin bread my wife brought him and his staff had a little something to do with that.
At least this time we warned them of the difficulty I had last time of getting my IV inserted. As a result of us mentioning this they prepped my arms by rolling them in warm towels and hot packs and sent in a very skilled nurse to start my IV. She was brilliant and got it the first try. I can't tell you how much of a relief this was.
I don't recall if I mentioned this previously but it took three different staff members on three different locations on my body to get my IV started last time. I almost ended up passing out. Finally the anesthesiologist got it done. Besides recovery, the worst part of the last surgery.
The staff mentioned on several occasions that I would be meeting with my doctor, which didn't happen last time, before surgery but I was prepared to insist on it if need be. I was relieved when I saw him and I knew I wouldn't have to push for it. It's always nice to be able to talk to your doctor before and after surgery. Last time his physician's assistants gave me wrong information before and after surgery. This time I was determined to get it from the horses mouth, as it were, before and after my procedure.
I wanted to make sure that when he had me on the table and before he removed my lingual tonsil that he scoped my throat and went all the way down past my Adams Apple which is where I'm experiencing the most pain and discomfort. I also wanted him to make sure that there wasn't anything going on down there. He insured me that he would. He also explained that he would be removing both lingual tonsils.
I met with my anesthesiologists one of whom said a prayer for me. They then administered the sedative that would "relax" me and before I even got to the operating room I was out.
I awoke about four hours later in my recovery room with my wife by my side. The surgery only took a couple hours. Post surgery is a lot of checking vitals and making sure everything starts working again.
The only thing I had trouble with was urination. I initially thought there was something wrong with me. I just didn't feel the need to go, but apparently that's a side effect of the anesthesia. I had to be "drained" once with a catheter. I've never had that done before and the discomfort motivated me to get on-board the pee train, sorta speak. I knew that if I tried, I could go a little, whether I felt it or not. Now all I had to do was go more often and I could keep my bladder below the point, approximately 500 ml, where they would have to catheter me.
Apart from that everything else was pretty normal. I was able to drink clear liquids, protein juice and jello, and take my medicine, with the aid of the Aloe Gloe I brought. I stayed overnight and began an advanced liquid diet the next day consisting of creme chicken soup, sherbet and pureed pears. The soup was good and I was able to finish it which was a significant accomplishment because it allowed me to get the calories needed to heal quickly. The sherbet was ok but after I saw all the sugar it had I put it aside. Nutritionally it was just not going to contribute to my healing so why bother. The pureed pears were too acidic and burned going down so I left those unfinished too. I also had one of the vegan protein drinks I had brought; another moral booster due to the calories and nutrition it provided.
In the afternoon they finally gave me the news that I could go home. I think that's always welcome news when in the hospital. Everyone was really nice and attentive there, but, as they say, there's no place like home. I heard my doctor was in the building so I asked if he could come by before I left.
He came in the room with a couple interns, I believe. I'm not sure since he didn't introduce them. He was under the impression that we had specific questions for him ready-to-go but I really just wanted to talk to him about the surgery. He seemed kind of put-off, but my wife got the ball rolling and it turned out to be a very informative conversation.
The obvious question, which he had already informed my wife who in turn informed me, was that initial pathology didn't find any squamous cells in the tonsil tissue. They'll be sending that out for a detailed analysis which should come back in five days. He said they removed an area about the size of two half-dollar coins stacked on top of each other. I was surprised at how large of an area they took out in relation to the relative little pain I felt. He also took out a ridge of suspicious tissue in my throat and that was healthy too.
He did scope my whole throat again going below my Adam's Apple and he said all the tissue looks really healthy. He said this will be my last surgery, at least for awhile unless it shows up somewhere else.
I asked him where else it could be hiding. He said either my immune system got rid of it, my body formed a cyst around it somewhere, or it's somewhere very, very small. I then asked if at such a small size could it still have spread to my lymph node? He nodded and said, "Yes.".
He also acknowledged the contribution I made in discovering the discrepancy in radiology images to his interns. He said I am the person responsible in bringing it to their attention that images were missing when transferred between databases. He let me know that they had a meeting that very morning with radiology where he had some firm words expressing his dissatisfaction with the discrepancies in the system and was determined to get it corrected. That made me feel good to think that I may have had a part in finding a flaw in a system that, once corrected, will insure people can be diagnosed more accurately.
Despite him being a little put off by having to come down without me having pre-scripted questions he ended up being very forthcoming and communicative with the conversation even venturing into the jovial realm at times. I'm sure the pumpkin bread my wife brought him and his staff had a little something to do with that.
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