Hello and i need some advice. 3 weeks ago I had surgery to remove a tumor on my tongue due to the HPV virus and i also had one Lymph Node remove from my neck. My surgeon, stated that my operation was perfect and his quest to find positive margins around the areas of operation was all negative. With that he said that if i was at a more cancer progressive hospital " they would say no radiation is needed". Two weeks later my case was presented to the Tumor review board and now they are asking me to consult with a radiation doctor because my Lymph Node had cancer. What should i do? Also my surgeon also said that if i take radiation that i will have a 10% chance of this coming back to me, but if i don't it would be a 16% chance. i really don't wish to experience the terrible side affects with the RT sessions. i need to swallow and speak and on top of this i accepted an offer for another job and this may prevent me from making this change. i am worried but feel pretty good after three weeks since my operation.
Can anyone offer any suggestions? Thanks Bruce
I would go for a second opinion, preferable at a CCC. There are a wide variety of factors that may determine the likelihood of a recurrence - tumor size, smoking history, genetic tumor characteristics to name a few. Another set of professional eyes on your case would be worth it. You don't want to be doing the cancer dance a second time.
Maria
Hi, Get to a CCC and get a 2nd opinion, you must do everything possible to kill this beast once and for all, no one needs a reaccurance of this!! Do all you can to win this war!!! Here in New England I saw a whole Team of Cancer Spealists before any course of action was taken. I am now working on 7 years free!! Semper-Fi Bob
I would definitely get a second opinion and personally because you had a node involved I would agree. Rads and chemo would be the best option. Are you sure you were hpv positive? Usually oral tongue cancer is not HPV related. Regardless I would do what I can to get it now.
take care.
Bruce there are some very difficult decisions to make when facing this terrible disease. A second opinion has already been advised, which I will also suggest. The best thing you can do is to get all the info, facts and treatment plans (including a second possibly third opinion), sit down and talk it all over with your family. At some point you will need to put your faith in your medical team and do your very best to look ahead and not "what if".
Best wishes with your difficult choices.
Bruce, similar info to what I was told in 2012. This was not the time I wanted to become an expert and make one of the more important decisions about my life. This is a polarizing topic on the site. As folks above mention get several opinions, find both younger and older RO's, they tend to have differing views which are important to understand. Some factors which I considered were... Existing health, access to screening, personal ability to live with higher uncertainty, my family's ability to handle uncertainty, oral health, QOL in 15 years, etc... It is a tough one, I involved a couple close family members in help me. There is no looking back, you simply make the best personal decision based on the very imperfect info available.
Marie,
When you say that your saliva is returning, did you have radiation therapy? Can you share that experience with me. This is what i really don't what to go through because if the likely hood of this cancer coming back is only a 5% difference with or without radiation, then i will elect not to get treated.
Thanks,
Bruce
Mike,
So you had no Rad or Chemo, right? It seems that your procedure was close to mine. What made you decide to for go the treatment? i would really appreciate your comment. My doctor was great and he seem confident in stating that all cancer was removed from all affected areas.
Bruce
Cheryl, thanks for the post and yes it is HPV positive. I don't want Reds. What side effect did you have? This really scares me the most and since my doctor told me that there would be a 10% chance with RAD that the Cancer would come back and a 15% without RAD, then i would elect not to go through the RAD treatment.
Bruce, take a step back and look at the big picture. This is cancer, and a very aggressive one at that. Many patients will only have one shot at hitting it with all the tools to eliminate the cancer the first time. You do not want to fall into that category of patients who have a recurrence saying "I should have....".
Numbers may seem like a logical way to decide what treatment route to go with. However, everyone is an individual and numbers dont always tell the whole story. If they did I would not be here right now.
Being HPV+ means you are in the group of patients who respond better to radiation. The HPV+ patients have less chance of recurrence. At this time the treatment for HPV+ and HPV- is still the same but it could change to less in the future. As long as you are not a former tobacco user, being HPV+ is a good thing when it comes to having OC.
Radiation is not a walk in the park for most patients. A few lucky patients will sail right thru with little side effects and recover quickly with hardly having a day where they are very sick.
If you have had a second opinion that could help in making this decision. Have you gotten a second opinion with a CCC team of doctors?
Christine,
Thank again and i didn't even meet with my RT doctor yet. This isn't schedule until the 19th. Why do they make you wait so long after surgery? Do you have to be all healed prior to getting treatment?
As Cheryl mentioned, HPV-16 related HNC is usually in the oropharynx, like base of tongue, 90% of the time, as opposed to the oral tongue, which some say HPV-16 may occurr there, but some say it could be misclassified as oral tongue, and be an extension of BOT cancer. Another is HPV related cancer outside the oropharynx is found to respond differently. As far as RT after surgery, the ideal time is 4-6 weeks, but depends in healing.
Good luck.
thanks Paul and it is HPV 16 positive. it was on the way back of my tongue and about the size of a jelly bean i was told by my surgeon.
Bruce,
As stated before, you want to kill cancer with all guns firing. It is sneaky and evil and will hide and attack you and kill you if you do not get it first. Simple as that.
If the tumor board recommends seeing a RO for radiation you should run and wait at the door. Radiation therapy sucks but it will allow you to live on.
Now, there are two schools of thought. Minimally treat and hope you got it or go aggressive, all guns blasting to kill it off. Often the decision hinges on side effects and if you are very young then it seems there is a bias to use less treatments with know severe long term side effects. The older you are the more likely they are to hit you hard the first time. It takes a lot out of you and avoiding recurrence is more important. If you are you your body can take more treatment and recover better than us old farts.
Good luck, Don
Sounds like BOT, which is different, and treated differently than oral tongue, and more likely to be HPV related. BOT (oropharyngeal) can be a pesky cancer, difficult to treat, due to its deep vasculature, high lymphatics, and access to lymph nodes. p16 staining, a tumor suppressor protein, used by some institutions to identify HPV-16 positivity, is usually the case, but not always, in case it is the oral tongue, and p16 positivity, HPV negativity by other testing, can mean a more aggressive cancer. I would find out which it is oral tongue vs BOT. Early stage oropharyngeal cancers can be treated with surgery or radiation, but most are late stage, and treated with radiation and or Chemoradiation also.
Good luck with everything.
Paul,
Thanks for the comment. Yes i had surgery on the back of my tongue and one lymph node removed. They told me it is HPV positive 16.
Bruce - I really feel for you. Wish myself or anyone had the right answer for you. Unfortunately, there isn't magic answer. No one can tell you if it will rerturn or not without the rads. It's maddening!! My situation was different bec they never found the tumor the first time, ony found the node involvment, had a neck dissection and I didn't have rads. Tumor reared its ugly head the second time with no node involvement, I had TORS (trans oral robotic surgery) to remove the tumor and decided to do radiation only (chemo was not recommended) I have to say the small % difference and the fact that my RO said that either way I went would be a reasonable decision, almost put me over the edge. But he highly recommended radiation and I trusted his opinion, so went with it. I do not regret my decision with both experiences. Do I have dry mouth?yup..do I hate it?...yup..does it get in the way of my job?...yup. However, I made my decision and refuse to look back. I think the biggest thing is not to look back after you have made your decision. I can so relate to the agony of the decision. Praying for the best for you.
Bruce, it's vital to seek second opinions as several folks have suggested.
I've done it twice, and both times the treatment recommendations from two top-notch institutions have been astonishingly different. Asking the docs for the reasons underpinning their recommendations will give you confidence in your decision. In my case, after surgery one team said rads only. The other said rads plus chemo because of risk factors specific to my case, citing by number the relevant clinical trials. I'm no doctor, but when I looked those studies up my blood ran cold; I understood enough to know that I really did need to fight aggressively. I switched hospitals on that basis. My point isn't that you should or shouldn't have radiation; my point is that this decision is too important to base on just one medical team's particular experience and bias.
You don't have to wait to make an appointment with another hospital. Large teaching hospitals have better patient outcomes and would be ideal to consult.
I sense that 90% strikes you as pretty good odds. Find out if other docs are also that optimistic, since it seems crucial in your decision making. Not trying to be alarmist, but I've never heard that rosy statistic before.
I remember how tough it was to be in your shoes. Sorting out the options isn't easy. You're smart to come here for perspectives and you're on track to make solid choices that are right for you.
Good luck!
Bruce, that is correct.. No Rads or chemo. The RO's opinions were split, several recommended Rads, several recommended monthly screenings and Rads only if something developed. You should push for earlier sessions with RO's, even if you need to go out of your network, get several opinions from top Cancer centers. As Christine points out, most people can tolerate Rads and recover well.
Glad you're doing well MikeM. Especially glad that you didn't do the rads on top of that. Best wishes for many, many more.
Be well...but be diligent!
NGK, you have spark plug initials. Thanks for your concern. My whole procedure is like yours with the TORS and NECK Dissection and because of the chat site, i am going to see the RAD DR on the 19th. i want to believe he is confident in his findings and comments on the % of Cancer returning.. Maybe because my tumor was found and removed and all surrounding tongue and lymph node tissue was perfect that i can just live on observation sessions. Another issue is that i accepted another job to start in April, so with all this going on in my life, what to I do stay where i am at or give notice and start a new gig, then what if i do get RT, how bad would that be for a new start.
Decisions Decisions.
Thanks Mike and will get a few opinions, but my ENT cancer surgeon really sold me the first time. i appreciate the response. Why didn't you go through RT? Also how long do you think i can wavier this decision before actually deciding? my operation was on Feb 12 and my 1st RO meeting is on March 19th.
Thanks,
Bruce
Mamacita,
Thanks and my hospital is pretty top shelf and is a teaching hospital and when i do see the RO, i will ask for my files and research to get a second opinion. Recommend any hospitals or treatment centers in the Chicago land area?
Thanks,
Bruce
Hi Bruce, I know that the University of Chicago Cancer Center (1-855-702-8222) is very highly rated. Another option could be the Lurie Center at Northwestern (1-866-587-4322).
When you call for an appointment, the hospital will take care of obtaining copies of all the records needed (usually scans and pathology and operating reports). I know you've got an eye on the calendar and that would be the fastest approach. I was amazed to learn that some hospitals and large health care providers can even access all of your records electronically with your consent. Convenient but scary too!
Your job situation is quite a dilemma. Would the new employer provide immediate health insurance, or is there a waiting period? I think the new health care law allows up to a 90-day delay.
Really sorry you're facing all this, but glad you found this Forum.
Lynn
i had a similar procedure--robotic removal of primary BOT and modified neck dissection to remove lymph node may 10 2013---my margins were clear and only one node had cancer and no extracapsulary extension---nonetheless radiation was recommended---i finished rads on august 7 ---worked full time as lawyer for all but last week of radiation and two weeks thereafter---checkup every 3 months and cancer free for 6 months now--some lingering dry mouth and taste issues from rads otherwise back to normal--i decided on radiation because i am otherwise healthy and wanted to fight when i was strong--don't let employment drive your decision--there are always jobs--good luck
timm, I'm weighing robotics vs. radiation. How did you decide to do robotics? And, how large was your primary tunor as well as the lymphs?
Bruce, I think you are doing fine on the timeline.. I recall my doctors guidelines was to start Rads within about 6 weeks of surgery. Similar to you, the surgeon was exceptional, I could tell from his knowledge, experience, honesty, etc.. He was confident of the surgery outcome. He initially assumed I would complete radiation. After interviewing the first RO I was disappointed in the lack of 'alternatives' discussion, if I hadn't read the NCCN guidelines they might have skipped the discussion. Only after requesting additional opinions, and getting percentages similar to yours, was I able to work to a decision. The main reason I took the higher risk route was my existing oral condition. I didn't have the gift of naturally good teeth, I had just done periodontal work, and some gum restoration, and I want to do a bit more. It seemed like rads might be just enough to cost me my teeth within a few years, I really wanted to keep them much longer if possible. The surgeon confirmed he would do the regular screening for any sign of reoccurance, we met every 6 weeks for past 2 years, now it is every 10 weeks. He is very thorough with a scope down in the primary tumor area, as well as externally around neck and shoulders. As i look back 2 years it's hard to really sense if it was a reasonable trade off or somewhat short sighted.
Mike
Mike,
Thanks i will going the observation route starting in Mid April and will be taking a new job too. Just curious... since i sort of latched on to your story and you are the only one that responded with the No Rads decision, have you changed or modified your diet in any way. i.e. vitamins, supplements, more fish etc.
Bruce
Hey bruce!
Glad you were able to make a decision. Be well. I'm rooting for you!
Bruce, glad you made a decision. No change in diet, already benefit from home cooked healthy foods. I'm keeping up the exercise which seems like the best medicine. Doing the over 50 daily vitamin, but not religiously. Light alcohol, which is no change for me.
Areas to watch closely are the tumor location, and the neck, especially down toward collar bone. Dr checks everything, I do the careful neck & upper shoulder check all the time. I believe HPV grows a bit slower than other forms, so the 1, 2, and even 3 year milestones are key. From what I'm told 5 years is the target to discontinue the regular dr visits.
Mike
Hi Bruce, glad you've reached a decision. For me it was a huge relief just to have a plan. I think others have chosen the path you and Mike are taking, but may be less likely to participate in the Forum. Good luck in the new job, hope you check in from time to time!
Lynn
Thanks for the support. i hope and pray this issue will stay away. Being Positive and riding on my surgeon's comments regarding the low % of this cancer coming back again.
Bruce
56
10/31/2013 had super painful ear ache in right ear cancel
went to a normal ENT and he found nothing.
11/2/2013 pain subsided and went on with life
1/6/2014 discovered "cherry tomato" size lump on my lymph node in my right neck area
2/5/14 CT PET scan light up of tongue and tonsil
2/12/14 robotic surgery- to biopsy tongue and tonsil area for negative margins, then neck dissection to remove one lymph node and back the robot to cut out jelly bean tumor and affected tonsil. all area around removed cancer shown negative for cancer.
3/12/14 decided to go the observation of every two months route for now.