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MarvB #196309 04-29-2018 03:48 PM
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Paul reminded me of a couple things I should tell you. My situation was definitely NOT the average one. I saw many who had similar surgeries and they made out just fine, some were sent home after only about a week in the hospital. I'll explain what I can remember but it is NOT the usual experience most patients go thru so please dont worry more after reading about my issues... When I had a trach, from what I remember, I did NOT like it but I had to have it. I had the passey muir valve trach so I could talk easier so if you must have a trach ask for that one. Tell your doc this prior to the surgery and again when he comes to sign your body prior to surgery. When I think about my trach time, I was so uncomfortable and in so much pain from major surgeries, several skin graphs, staples across my face and arm, etc. Everything hurt!!! Even my wisdom teeth hurt me which I had removed 20+ years ago. LOL! Most days I just would lay as still as possible, moving even the slightest made everything hurt even worse. Remember... consider the source, this is coming from someone who is extremely wimpy!!! I was also pretty foggy during that hospital stint. I had trouble remembering from one day to the next who came to see me or what we talked about. I was kept in a medically induced coma for 3 weeks due to complications. When I was finally awake, I felt like I was in a daze most of the time. I could not concentrate, read a book, walk without significant help, I was very unsteady on my feet and didnt even have the strength to walk to the end of the hall and forget about walking by myself... that was way beyond my limited capabilities. I could barely text (or completely understand the text conversations going on), my fingers had trouble typing and I could barely read the text message, let alone figure out what it meant. Most patients are groggy after a major surgery. Being in pain and being groggy makes it so most patients arent too concerned about a trach or any other medical devices that are used on them. Even though I wasnt a fan of the trach, it was a necessary evil. What bothered me more than the trach was something that was annoying, it didnt hurt at all, it just bugged me. I felt the blow up leg balloons that kept inflating every minute or so making it impossible to rest and get comfortable. Bottom line is while in the hospital after having a major surgery, there are so many other things that take precedence over having a trach. Try your very best to avoid anticipating a trach and how you will manage it. Thats some of the "what if" thinking that only makes things so much more difficult on patients than it has to be. Kinda like borrowing trouble. Most patients find that focusing on something positive helps decrease their anxiety over a specific treatment, appliance, etc. Im sure you will be groggy and not even notice the trach at first. Then when you do notice it, you may not be aware enough to pay any attention to it.

The SpeakIt app is what a friend of mine always used. She was a wiz with it and found it to be super simple to use.

Yes, cancer can make you feel like you are alone on a deserted island. You are NOT on your own, we're right in your corner cheering you on. Stop back frequently!!! Dont forget you have us here to help you. We understand what you're going thru, many of us have been thru similar things and know exactly how you're feeling.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
PaulB #196310 04-29-2018 03:59 PM
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Thanks Paul. I'm glad you avoided it as many times as you did. My biggest fear of the trach tube isn't that I won't be able to communicate. My wife will be there most of the time. She does most of the communicating for me now since the cancer hurts so much I can hardly talk. My fear is the feeling of not being able to swallow and to feel like I can't breath. I don't know if feels that way or not since I've never had one. That's why I was asking for input from people with experience. I think mine is going to be in for most of the week I'll be in the hospital.


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MarvB #196314 04-29-2018 07:18 PM
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MarvB,

Not to bypass Christine's post, but I’m going to bed, and not sure when I’ll be online next.

I don’t recall them being a concern, at least now. I sleep on an incline bed at home, and probably was in the hospital. They have a little humidifier they put on the stoma site, so that helps. You’re pretty much out of it the first couple of days, I was, and pain meds help (morphine), but around the 4th day I was eating a pureed meal, sutting out of bed, so breathing wasn’t too much a concern as I recall. Plus, there was several nurse assigned to the 4 bed step down room, which is like ICU, and all were very attentive, and just waved someone over if needed.

I hope this helps, and was just my experience as I recall.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






MarvB #196318 04-30-2018 09:32 AM
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Thanks Paul, Looks like you have seen you share of surgeries and treatments. I hope you're doing better now and don't have any more setbacks. As for being out of it, they said I would be up and walking the second day. They apparently don't let you lay around there. They said I would have the trach tube most of the week. That's what terrifies me. I wish I could hear from someone who has a similar feeling about not being able to breath on your own or swallow who's had the trach tube. If I know what to expect, I can try to find a way to prepare for it. Thanks again.

Last edited by MarvB; 04-30-2018 09:37 AM. Reason: Additional info

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MarvB #196320 04-30-2018 06:18 PM
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I was told a few days ago by the surgeon that they were going to have to remove up to 60% of my tongue, followed by radiation. I told him that was acceptable but that I didn't want any more than that removed. I got a call from his office today telling me that they reviewed my tests again and that they may have to do a near full glossectomy. I told them no. My question is, has anyone on here had or know of someone who had radiation and chemo before surgery to shrink the tumor first or whose had radiation and chemo with no surgery? I know that having the near total glossectomy is my best chance to live but, to me, it' would not be the quality of life I can accept. Maybe I'm not as strong as some of the others out here but that's how I feel. So, if anyone has had radiation and or chemo without the surgery or prior to the surgery, I would like to hear from them. Thank You


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MarvB #196321 04-30-2018 07:00 PM
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I have had radiation with chemo as my first treatment plan for my first round of OC. My second bout of oral cancer was treated with only surgery as was the third round. After undergoing rads, patients have a compromised ability to heal. My doc was trying to avoid the mandibulectomy (jaw removal surgery) which unfortunately due to recurrences I ended up getting anyway. Recovery was a very long difficult one with needing IV antibiotics for 8 months along with hyperbaric oxygen treatments (HBO) to help the healing process. The odds of my survival going into the third round of OC in 3 years was slim but somehow I beat the odds and survived and eventually I recovered. Of course my stories are NOT those of the average patients. I had complications most patients do not go thru.

You definitely have some major choices and things to consider. I know those types of life-altering surgeries are NOT easy to decide. We're in your corner no matter what you choice would be, we are still here to support you.

I had a close friend who lived only a couple minutes away from me. She went thru heck trying to save her voice. Eventually she did end up losing her voice box anyway and used the SpeakIt app to talk for her. She lived a very full, great life even without having her voice. Sadly, no matter what she did, her cancer kept coming back. She had similar feelings as you do about her quality of life after losing her.ability to talk. What helped her make her decisions was getting second and third opinions from very well qualified doctors. Maybe hearing other opinions would help you too?


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
MarvB #196337 05-01-2018 10:05 PM
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Marv, Ive been thinking a great deal about your last post since I replied. You may find this helpful, or you might not. At the very least it will give you a different angle to view your situation. Im telling you the chain of events that led me to change my decision of not to get treated to go thru with the major life changing surgery. I am going to be completely honest and explain in great detail why my mind was changed and Im so glad it was. I just want you to consider the entire picture before making the do-not-treat decision.

When I was diagnosed with my third round of OC in 3 years I was shocked. I had not felt as strong and well in many years. I couldnt believe I was now a Stage IV patient who was facing losing half my lower jaw when I was feeling great. This goes back to the feeling of everything being out of control and how as being the patient most will feel as some point they do not have any say in any of their treatment decisions. There seemed to be no options for me to decide anything. When presented with an option the first thing I said was NO! I was finally able to make my own choices. It really didnt matter to me what the decision was about, I just knew I was finally able to say NO! like I was taking some of my lost power back. The big picture of my future was bleak!!! As a single mother to 2 teenagers who had no one else, I was beside myself with trying to figure out how my children would be ok without me. You know you're in trouble when the doc says "its time for you to get your affairs in order" which was exactly what my ENT told me.

My survival odds were so low that my doc wouldnt tell me any numbers. I had made the hardest decision of my life and that was to not seek any further treatments. My thinking was it was much better and easier for my children to have their mother with them when she was feeling good and strong and able to prepare them to go on without me. When I posted my decision to not get treated, I was overwhelmed with objections from other members. They made an excellent point telling me I couldnt quit before I tried. I couldnt think of anyone who had survived 3 rounds of OC. It really bothered me thinking of every OC patient I knew and I couldnt think of a single one who got thru that 3rd round. Many patients didnt survive the 2nd round. I finally decided to go directly to the source of who knew the most OC patients. I called Brian Hill the OCF founder and asked him about knowing anyone who lived thru 3 rounds of OC. I could tell by his pause he was caught off guard by my direct question. To this day I kinda have a feeling he fibbed to me but thats ok, I couldnt be happier to still be here. Brian said "yes, there are 3 time survivors. Not many, but there definitely are some out there and if anybody could do it, I could." Between the OCF members nagging me to try instead of giving up and Brian telling me there are 3 time survivors out there I changed my mind and sought treatment.

Once I finally agreed to try I had so much to prepare before that surgery. My doc let me choose the date of my surgery and I selected 2 days after my sons birthday. I went right to work as I had only 2 months before that surgery date. I had TONS to accomplish. I gave my beloved dogs away to a friend from our forum who gave them both a forever home. I got right to work and put my house up for sale. I moved to an apartment that was close to the hospital instead of like my house was way out in the woods, 45 minutes away. I started writing letters to my children that they could read thru for many years chock full of important tips on milestones they will go thru in their life. I took them out and made some great memories. I decided that no matter what they were not going to think back to memories of their mother and think of me as someone who was weak and sat around crying about things instead of doing something about it. We went bike riding, long 25 mile rides along the river, zip lining (I chickened out after getting half way up the gigantic tree), horseback riding and all kinds of fun family adventures. I decided to have a huge birthday party for my son and told both of my children to invite as many and whoever they wanted but to invite everyone. I wanted them to be surrounded by people who cared about them just in case I didnt survive the surgery. So on Aug 22 we had a huge party in our small apartment which was a great day for everyone.

Just agreeing to go thru treatment for that third round of OC was one of the hardest things Ive ever done, let alone doing it! I ended up having complications from the surgery and my body rejected the titanium plate used to replace my jawbone. Leeches were used to promote bloodflow to the transplanted tissue, it was unsuccessful. The mandibulectomy had to be redone. This caused me to become disfigured. I was in critical condition being kept in the burn unit due to needing so much attention from the medical staff. After 3 weeks of being kept in a medically induced coma, it was time for me to wake up. During the hospitalization my oldest child would stay in touch with one of my OCF friends who would in turn post updates. My son also posted for me. To this day I cant read his posts without crying. He came and sat with me every day I was in the hospital weather I was awake or not. My daughter who didnt drive came as often as she was able to. It was incredibly difficult for my children to see their only parent which they depended on for everything unavailable and laying there sleeping in the burn unit or then the ICU.

Once I finally was awake I was in great pain from head to toe. I was so sore after laying there for 3 weeks with barely moving. My son was who had break the news to tell me what happened and that my original surgery failed. I wasnt able to fully understand what he meant until a few days after I woke up and was able to finally hobble unsteadily to the bathroom. When I looked in the mirror I didnt recognize myself. I was shocked!!! The next time I went to the bathroom I took a much better look at the new me. It was at that moment somehow my inner strength took over. I realized that no matter what the outside looks like or what other issues I have going on, the inside is still me and there isnt anyone that can ever take that away. I reasoned all people will age and looks will always fade as people get older. So during those long 5+ more weeks I was trapped in that hospital, I prepared myself mentally to deal with my new appearance and how Im still me which can not ever be changed. During that long hospitalization, my son would walk me up and down the halls helping me to regain my strength. I had issues with healing and had a 6" long open "tunnel" that was kinda like a tiny straw that just wouldnt close. I was in great pain which is why I said in a previous post the trach and feeding tube werent fun but I had other bigger issues than those things. I knew they were only temporary and eventually I would be free from them. I had a wound vac that was like a small suction appliance attached to my neck for the unhealing "tunnel" wound to try getting it to heal. That thing ran 24/7 and drove me crazy with a whirring sound right next to my ear, definitely worse than the trach and feeding tube.

When I went home I was still in bad shape! I was very weak and unsteady on my feet. My son was there to help me but left for Marine boot camp only about 3-4 weeks into my going home. Luckily, I had visiting nurses for almost a year after going home, they came every other day to change my wound dressings and to check on my overall health. It was a long 8 months of doing HBO and picc line antibiotics 3x a day. It was a heck of a long road that took me a year until I was almost completely back to my normal self.

What my life is now after almost 9 years of surviving after that Stage IV diagnosis with a very low chance of survival is something I never could have imagined. Ive survived to have so many wonderful experiences. Ive seen my son marry a great girl who I know together they will create a long happy life together, I am a grandmother to 4 children I love with all me heart. I never imagined that being Grammy would be so fulfilling. Those little ones are always thrilled to see me and usually so much fun and well behaved with me. My oldest granddaughter, Savannah just turned 4 on 4/24/18. Even though I wasnt able to continue with my career at Verizon after going thru that huge surgery in 2009, my life now is so much better than I could have ever imagined. Brian not only helped to convince me to seek treatment that third time but he also gave me a reason to get up in the morning by asking me to become an Admin and to speak at OCF events. Ive been so very fortunate to have been able to meet in person some of my best OCF friends Ive made over the years at events all over the US. Brian is a very dear friend to me which I greatly admire. Brian was someone who saw something in me that he knew I would work trying to pass along the things Ive learned over the years to help others oral cancer patients and caregivers. Ive represented OCF in information booths at medical conferences and helped explain patients views to the doctors, nurses, dental hygienists and nurse navigators Ive met. I am dedicated to OCF and making everyone aware of what oral cancer is and how early detection saves lives. Thru OCF, I met some awesome ladies that are casting directors and was part of a TRUTH anti-tobacco commercial. More recently those same amazing women asked to include me in the CDC's Tips From Former Smokers campaign in 2012 doing radio ads. Last year I spent a great 10 days in NY making some of the CDCs latest anti-smoking commercials that are currently playing on all major networks. Do I ever think about how my looks have changed or worry about my health? Honestly Ive adjusted to my new self very quickly. Sure I still face my own set of medical issues every day but in the whole scheme of things.... I am so happy to still be alive!!! All the aches and pains and being disfigured has not been easy. I spend many days feeling pretty lousy and feeling sick but I would not ever go back and change that I opted to go thru with my treatment. Since that surgery, Ive helped thousands of oral cancer patients and caregivers get thru some of the hardest times in their lives. All those people needed someone to help them and I did as much as I possibly could do for them. Even with having a very different life now is ok. Im just so very happy Im still here and was able to finish my most important and biggest endeavor... I survived that third round of OC and was able to continue raising my children to see them become intelligent, kind, productive, and responsible adults.

Marv, I hope you will see that even though things havent turned out exactly as I had expected or planned for, my life is still a very good one. Sure I have my challenges but Im here to fight them and to me its worth it. Living with a disability is definitely not an easy thing to do! Please dont just say no to the surgery without thinking of the whole picture and how much you mean to those who love you. Consider what a great future you can have even if you arent able to be the same as you currently are. Please stop to consider those who are the closest with you and how you would feel if they were the ones who were refusing necessary medical treatment knowing it will save their life. Being different isnt always a bad thing! Im positive you can do so much good in this world no matter what your challenges are. Your future will be changed no matter what your decision. I know plenty of others who have overcome adversity and gone on to live awesome lives despite having some medical challenges. We have someone here who immediately comes to mind... MissKate. If you read her posts you will see how she has been thriving and thats after having a full glossectomy. I know you have it in you to overcome whatever is thrown at you. I wish you had the confidence in your capabilities to step back and take a good look at everything before making the decision to not have the surgery. As I mentioned before, we will support whatever you decide to do about your situation. I apologize that I have temporarily ignored your decision of not having surgery to write this extra long, detailed post that is a plea for you to keep going. I just couldnt get it out of my head that you too can benefit from all those people who years ago encouraged me to keep going and to try before just quitting. I promise to not nag you further, just please at least consider all of your options before making your decision.

Feel free to PM me if you want to discuss this further.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
MarvB #196338 05-02-2018 12:09 AM
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Marv,

Welcome to OCF and very sorry you have a need to join our group. You’ve been given great advice and there isn’t much I can add. As you can see from my signature, I’ve been dealing with oral cancer since 2005 and had my share of problems, misdiagnosis and recurrence. I know Christine personally (remarkable person) and as she stated most people with oral cancer do not have a recurrence and leave this forum once their treatment is done. When I had a recurrence one doctor recommended having most of my tongue removed. I was terrified of that prospect but did schedule that surgery. Fortunately I went for another opinion at one of the best hospitals for oral cancer in the country, and was given the option of a far less invasive surgery. That was in 2010 and I’m still here.

I gave birth to 2 sons without pain medication, but oral pain is IMHO far worse. There are many pain medications that can help you with that. I was on the fentanyl pain patch for many months post-radiation - powerful medication but it does help. Opioids do help and are prescribed for many OC patients. There are many mouth rinses to help numb the pain and help you eat. It is difficult to eat and maintain proper nutrition when you are in pain. I lived for many months on smoothies. A good blender (ex. Vitamix) really helps. I’m also claustrophobic and anxiety mediation did help. The treatment isn’t easy, but it is only temporary. Take a day at a time and focus on the future. This forum is a great resource to connect you with people who have been through treatment before. So ask questions. Wishing you the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
MarvB #196339 05-02-2018 04:32 AM
Joined: Jun 2007
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Marv, Susan2992 was there with me in the hospital back in 2009 when I went thru that major surgery and recovery. She sat with me thru some of my darkest days and would check up on me while I was home too. She's someone who helped to encourage me to keep going and Im so glad I did. Thanks Susan!!!!

Susan's correct in advising a second opinion, or third or even a fourth opinion. Going to CCCs where you should encounter the best skilled professionals in the country may help in lessening the amount of tissue removed. In the big picture, the surgeon will have a much clearer view of how much will be taken once hes in the OR and can actually see what they're dealing with.



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
MarvB #196349 05-05-2018 01:02 PM
Joined: Apr 2018
Posts: 39
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Susan and Christine, Thanks for the advice. I did go to another hospital and got a second opinion. They said that, based on the CT scan and the PET scan, 60% removal of the tongue was an optimistic estimate. That it would be more like 80 to 90%. I told them the same thing I told the people at U of M hospital. That I would not have that much removed. They offered an alternative which U of M didn't. They said the could do platinum based chemo along with seven weeks of radiation. He said, because I was stage IV he recommended surgery because that was the preferred option based on conventional medical wisdom but that he had very good success with the chemo/radiation approach. My question is, has anyone on here chose that option and what was the outcome. It seems like everyone I see on here so far who had cancer of the tongue had surgery. I'm wondering if it's because those who didn't have surgery aren't around to post about it or if I just haven't been on here long enough to find those other people. Thank you to anyone who can help.


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