72 yr old facing TORS tonsilar procedure......HELP!!

jkinobay
jkinobay Member Posts: 276 Member
edited 4:07PM in Head and Neck Cancer #1

15 yr survivor of SCC left tonsil/lymph nodes. Had 35 IMRT and 7 Cisplatin chemo in 2007. NED until this week. Just had a biopsy for a sore throat and the results are not good. SCC again but in the base of where the right tonsil was. Waiting for PET appt. Have appt with Oncologist and TORS Surgeon scheduled for next week (4/19). I'm 72 years and beat this thing for almost exactly 15 years so no room for me to complain. However, given my age, honestly I'm scared and worried about this TORS procedure. Recovery time? What to expect in terms of being able to swallow, eat, drink? Etc. So some of you "youngsters" that are up-to-date on the latest in TORS tonsilar procedures please enlighten me. Any possibility it could be outpatient?

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Comments

  • motorcycleguy
    motorcycleguy Member Posts: 454 Member

    jkinobay,

    I apologize, in that I don't have experience to share on this particular issue. All I can do, is tell you I hope the PET Scan results and any potential surgery give you the best possible outcome.

    I'm sorry you have to go through this - and I hope there's someone on here who has "been there" and can help you through it.

    I'm sending you all the good thoughts I can!...

    MG

  • RainierRick
    RainierRick Member Posts: 3 Member

    Ok here's some info found on TORS - Transoral robotic surgery uses sophisticated technology to access hard-to-reach areas in the back of the throat. It is a type of robotic surgery that enables safe treatment in hard-to-reach areas, such as the back of the throat. The surgeon accesses the area using specialized technology that slides into your mouth.

    It is not an outpatient procedure. Typically, only a few days hospital stay. Resuming everyday activities within a few weeks. You will receive at-home care instructions that are specific to your needs. 

    Keep the faith. You've got this - even at your age!

  • jkinobay
    jkinobay Member Posts: 276 Member

    Thank you. Just got confirmation of the PET scan for Monday at 7AM. Fingers and toes crossed at this point.

    Thanks again............day at a time.

    JK

  • wbcgaruss
    wbcgaruss Member Posts: 1,407 Member

    Jkino I am not up on this either but I am sure there is a lot of reliable information out there on the net about the TORS procedure itself.

    I am sorry you are facing another round of this evil disease but just fight on and NEGU (Never Ever Give Up)

    I know you will get through this, although no matter what treatment we get as we get older we don't bounce back as fast but that's OK we just take a little longer. I have had cancer 3 times and it's never good news but the ability of the medical community to deal with it continues to improve. Just trust in your medical team and they will give you the best possible outcome.

    Wishing you the best

    Take care-God Bless-Russ

  • jkinobay
    jkinobay Member Posts: 276 Member

    Thank you Russ. Appreciate your comments and confidence. Yeah, way to early to "throw in the towel". I'm pleasantly surprised by the medical advances since my first go-around in 2007. I have a 1/2 Bro in Ark 5 yrs older than me going through the identical cancer even as we speak. He just finished chemo and rads and they were about 1/2 of what I had. And, he didn't even have surgery.


    SO, doing my best to stay positive. Take care...........stay well, be well. JK

  • jim108
    jim108 Member Posts: 25 Member

    i had tors last august, i was 69. so being 72 is not a problem if you are in decent health now and have a strong mental attitude (this doesn't mean you are not afraid, etc but to me means you do whatever it takes to get through the day). having another person around is very helpful as you likely won't feel like doing much for some time.

    i spent one night in the hospital. i'll be blunt, it was some of the worst pain i every had, razor blades on my tongue, until i was deep into the rads & chemo and then that became the worst pain - in part because it was longer.

    i was pissed that they didn't prepare me for how bad the pain would be. they also messed up my pain meds. i was on IV something or other and 10 mg of quick release oxycodone every 4 hours as needed in the hospital. upon my release the rx was for 5 mg every 4-6 hrs. well that didn't work and i told the doc and they got with the program. further my insurance company only wanted to pay for 5 days worth on the 1st rx so i paid for it out of pocket and then they got with it. had the doc write on the rx that i was a cancer patient and recovering from mouth surgery. it was a pain in the ****. you might want to check with your pharmacy and the insurance company in advance. the pharmacy also had some programs they could use to lower the cost when i paid for it in full.

    i can't remember how long the pain lasted but it was a while. swallowing was difficult and i used protein drinks as best as i could and still lost a lot of weight - so you might want to put on some weight if you are normal or below. recovery was 6 weeks and then they started the rads & chemo.

    you are not alone. the folks here have been very helpful.

    Jim

  • jkinobay
    jkinobay Member Posts: 276 Member

    Thank you Jim. I appreciate your insight. I'm doing my best to remain positive........one day at a time. PET/Onco Consult Monday, TORS Surgeon Consult Tuesday. My Doc gave me some 1mg. Ativan for the PET (hate the tube). I'll get through this and I have an amazing support team. But like everyone, I'd rather be looking at it in my rearview mirror. HA HA


    Take care, a Blessed Easter weekend

    Jim K

  • Remington25
    Remington25 Member Posts: 78 Member

    Jim ~ I also had TORS but my surgery was much more than just the TORS (soft palate removed, part of tongue removed, 1 tonsil, epiglottis, etc...) I have recovered AMAZINGLY well but it was excruciating pain and I was in the hospital for 5 nights. As everyone on here says, YOU WILL GET THROUGH THIS if you keep your mind positive. Please keep us posted if you feel comfortable doing so!

  • tmarmil0715
    tmarmil0715 Member Posts: 9 Member

    My husband had a TORS and radical neck dissection on April 13th, 2022. He had pain for about 10 days, which he took Oxycodone 5mg every 4 hours for. Had surgery on Wednesday and was discharged home on Friday. Full liquid diet for 10 days.

  • RainierRick
    RainierRick Member Posts: 3 Member

    Thanks for the update - hope you continue to have strength to support him... Tell Jim to keep getting better! We're all keeping him in our thoughts and prayers. Looking forward to good news update in his recovery process ..

  • jkinobay
    jkinobay Member Posts: 276 Member

    Sorry I dropped off radar for a bit but here's an update. I had the TORS, right tonsil base along with radical neck dissection, on May 26 in Tucson, Az. Dr. Bearelly at Banner. Amazing man with an amazing team and staff. Inspires confidence, doesn't sugarcoat, lays it all out there and presents his case for his recommendation(s). The very best you can do with a Doctor like that is study his recommendation, then commit 150% and don't look back. And if you can't commit 150%, look for a second opinion. But once you are locked on..........stay with it. Don't second guess.

    Original biopsy in April indicated SCC, p16 positive but the post-op final pathology report indicated negative for all HPV strains. Confusing, because on my first go around in 2007 with SCC, Left tonsil, pathology indicated p16 positive. Which, as is widely known now was in effect, good news because p16 SCC is less aggressive and responds better to treatment. On my left side, according to a recent PET, my 15 year NED clock is still running and I'm sure the p16 positive contributed to that success.

    So this new cancer on my right side was fortunately caught very, very early and the TORS was able to get it all. Post op CT's indicate NED on both sides now. As insurance though I am undergoing 30 IMRT treatments of much lower dose and shorter duration in the mask. All good news. Compared to 2007, I had 35 treatments average 30 minutes in the mask. This time 30 treatments average <10 minutes in the mask. In 2007 I had weekly CISPLATIN cocktail for 7 weeks. This time, NO CHEMO..................WAHOOOOOOOOO!!

    At 73yr old and having had all the radiation and chemo in 2007, my time to recover from the TORS and especially the RND were much longer than anticipated. In fact I'm still having issues but it's all part of the "NEW-NEW" normal. Biggest concern is that my right shoulder dropped about 2 inches from nerve/muscle damage due to the RND and is somewhat painful and considerably weaker than before but Docs say that may improve over time. Concentrate on the IMRT, PT later, they say.

    So thanks again to all of you who commented. I promise to stay tuned in in better fashion and to definitely make many more annual ROLL CALL's. Take care

  • jkinobay
    jkinobay Member Posts: 276 Member

    OH, and a question for all............Have any of you personally tried, or have confident information from someone who has, using CBD Gummies or Oil products for aches/pains, anxiety, sleep-aid, etc.? I know the FDA is a long ways from qualifying or endorsing but you hear so much anecdotal information you have to wonder if it is by far for the most part hype or super-marketing, or if in fact there are products out there that legitimately make a difference. I have tried a couple based on family member's who had positive experiences. But, to be honest I can't tell much, if any, difference.

    Your thoughts? Useful, or NO? A particular product that seems to be more effective?

    Take care, and thanks again

  • wbcgaruss
    wbcgaruss Member Posts: 1,407 Member

    Jkin Welcome back after going through another trial of this evil disease. Sorry, you had to go through this again I hope cancer never darkens your door again. I believe they have improved knowledge of this disease and treatment ts since 2007 your first go around. So glad the cancer was caught early and the TORS got it all. but I think one of the best factors is you had a great doctor and a great medical team and you really know it and you really appreciate them. I praise God for your many Blessings. I am with you on appreciating doctors and teams working to get you through. I would say through any of my cancers I was Blessed with the best of people who were smart and caring and just wanted me to get through the trial at hand and did everything in their power to make it so. Wonderful for you this time that you got fewer radiations and less time on the table and no chemo. Less and no of any of this treatment is good news I celebrate with you. You and I and all the other H&N veterans on here know we sure don't need any more leftover side effects. The shoulder you can deal with later with physical therapy, mine hangs down from my last operation also but one more thing you learn to live with. Can you share a first name with us?

    As far as the CBD oil I have not used it. I know of people that have used it with mixed results. They seem to be pushing it as a cure-all but I don't think it lives up to its name. I think the problem is it is made by many different small companies and the ingredients vary a lot as to what you are really getting in there. Also if you search it and read you have to be aware of side effects and it can interact with the medications you are taking. Heres a comment from the Mayo Clinic--


    And here is some info from the University of Connecticut--


    The main thing is I am so glad you made it through all this and you are another example on here of our rally cry for everyone--Never Ever Give Up.

    Wishing You the Best

    Take Care God Bless-Russ

  • RainierRick
    RainierRick Member Posts: 3 Member

    JKINOBAY

    Welcome back - I am glad to get your update!

    You and I are the same age! I celebrated my 5th year 'Bell Ringing' anniversary. You've been through a whole lot more than I have and, in some cases, probably not as much as someone else - but commonly we are all still on the road to recovery and grateful to be alive! They say you only live once.... not so, in my opinion, - you only die once; you live every day.

    I appreciate your CBD question as well as the response Russ posted earlier about CBT - I plan to look into it. There may be a well-deserved benefit for the both of us. !

    I will stay 'tuned in here' in support while you are in IMRT - keep us posted along the way as you feel up to it... best regards, thoughts and prayers - Rick

  • jkinobay
    jkinobay Member Posts: 276 Member

    Thank you Russ. BTW, my name is Jim..........very glad to make your acquaintance although we all wish it were under perhaps different circumstances. Very much appreciate your kind words of supportive wisdom. I wish this had been my first time but the Good Lord decided otherwise so I'm dealing with it.

    Today will be #12 of 30, so next Monday will be 50% and cause for celebration. I'll keep you posted.

    On the CBD, I agree. I think it is a flash-in-the-pan cottage industry that is long overdue for regulation. There probably are real benefits from the right distributors but weeding through the snake-oil salesmen is tough. Hopefully the FDA can reign them in someday and give we consumers a level of confidence that we will actually get "as-advertised" products.

    Take care..................God Bless and keep on a keepin on. JK

  • jkinobay
    jkinobay Member Posts: 276 Member

    Thank you Rick. Very much appreciate your kind words.

    I learned a very long time ago that if I catch myself feeling down or even a little sorry for myself then all I have to do is look around and immediately see someone who would probably gladly change places with me. There is a patient in my daily radiation waiting room that is about my age and in a wheelchair who looks to be no more than about 100lbs. He has difficulty speaking and you can tell that he is not doing well and does not feel well. I see him and do my best to communicate but it is difficult for him. So, my situation is nothing compared to his.

    I'll keep you posted as this adventure continues. Today is #12 of 30 so next Monday will be 50% done and cause for celebration.

    Take care and may God Bless. JIM

  • jkinobay
    jkinobay Member Posts: 276 Member

    PS: I took the liberty of copying your images. They are great and to the point.

  • Remington25
    Remington25 Member Posts: 78 Member

    jkinobay ~ Thank you for coming back to post an update. I am sorry the recovery from TORS wasn't as good as it could have been, but you are cancer free so that is a great thing. Please keep us posted throughout your radiation as I'm sure there will be others in your shoes and your posts can be information for the next person that goes through it a second time.

    I also looked at CBD and medical marijuana to help with my pain initially but I'm glad I didn't personally. I know of several people that swear by CBD so if you do try it please post about your experience with it.

    Good luck with the final half of treatments!!!