I'm currently being treated at Johns Hopkins and finally have surgery dates scheduled after several consultations, including their multidisciplinary team. Last Friday when I was terribly frustrated and upset after talking with my surgeon (basically rushed and rude and still no surgery dates), my husband contacted University of Maryland (another center of excellence) via the web to see about another opinion. We didn't hear anything from them, and Hopkins called me Monday with my schedule. Finally, a decision made and in motion.

Well, the doctor from University of Maryland called me this morning and after discussing the particulars of my case said he didn't understand why I was having surgery when I was going to need radiation and chemo or at least radiation anyway since I have nodal involvement. He said data does not support the benefit of surgery in addition. (He was careful to caveat that he would have to see me to make any actual recommendations about treatment but he doubted they would include surgery.) He offered to see me Monday for an examination/consultation. Unfortunately, I have appointments at Hopkins both morning and afternoon on Monday for a presurgery exam and speech pathology baseline. My first surgery is scheduled next Thursday.

I know you're not medical folks. I'm looking for personal experiences - which path you chose, if you would make the same choice again if you could, and why or why not. From reading other posts here, I think I know how David and Cheryl feel. Anyone else want to weigh in on this subject?

Karen,


Why would you not try to get that second opinion if it is physically possible. That way you have no regrets that you have made an informed decision. I know that the time frame is an issue but I think I would juggle appointments however to see the doc at U of M. Some here have gotten 5 or 6 opinions (See DavidCPA).

I know this is so wrenching and hard but you might not get another chance to change your mind....good luck,

Deb

A second opinion is always a very good idea especially for someone who has other medical complications. Once a decision is made and someone goes thru their treatments its not productive for them to be second guessing if what they did was correct. This will cause undue mental anguish and worry.

Here is the NCI website which has guidelines that spell out step by step exactly which path to take for which scenario.

NCI oral cancer info

Karen,

Move those appointments and get that second opinion. Knowlage is everything and you don't want to learn something very important to your treatment after the fact when it is to late to act on it.

I know you probably feel it is important to act now and get the surgery done, but the short delay that the second opinion will cause is not enough to make a difference, while the second opinion could make a huge difference in your quality of life for the rest of your life.

You do not want to be in a situation where you are second guessing yourself forever.

hey can always cut but they can never put it back. Get that second opinion.

Karen- I am in 100% agreement about getting that second opinion. I know it feels like you're using up even more time when you feel you could actually be Doing Something, but in the long run, you don't want to look back and say 'what if".
And remember, ultimately what you do is your decision. You just want to make sure that the decision you make regarding any treatment is an informed one.
Best of luck to you!
Lyn

Hi all,

Thanks for the quick replies! It's my own fault for the misleading title (I posted too soon after the phone call and didn't word it well) but I was really hoping for anecdotal personal experiences on surgery vs. chemo and radiation, not whether to get another opinion. From you guys, I was looking for the informal "gotchas" that you rarely hear about from the medical professionals, no matter how many you consult.

I've already read the guidelines and I already know the value of multiple opinions. I went through this with my bone marrow transplant and did get many opinions before I chose Johns Hopkins. One lesson I learned is that each hospital (and each doctor) has its own protocols and they often vary widely. I'm talking about the "top 10" cancer centers here, not random local outfits. Each one believes their way is best based on their own research and experience. The trouble with cancer and associated treatments is that it can vary so much in each individual. There are no easy choices.

The reason I returned to Hopkins is that I have a history there now. All of my records are there from the past three years. My current doctors can more easily confer with my transplant doctor if there are any relevant issues. In addition to my local ENT I've had formal consultations with a variety of doctors at Hopkins, including a visiting RO from another major center, an MO, a surgeon who has expertise with graft vs. host disease in addition to head and neck cancers, and two head and neck surgery oncologists. The robot at Hopkins is in high demand and getting on their schedule in a timely manner required trading slots with another department - changing at this point is not trivial or I wouldn't hesitate to see the doctor at University even though my mind's pretty much made up at this point.

I felt good about the path I've decided on but the doctor on the phone this morning was so anti-surgery, I wondered what I was missing. I described in detail my diagnosis and my history but he still seemed set on the "by the book" protocol for small HPV+ tumors, to the point of seeming close-minded. I asked him what the downside of surgery was and he didn't give any other answer than "data doesn't support that it adds effectiveness" in addition to chemo and radiation, even after I told him that the goal is to avoid chemo and avoid or minimize radiation based on my past medical history. I had the feeling that I wouldn't hear anything different from him if I rearranged my schedule to see him Monday (he had no flexibility on his schedule). There wouldn't be time to get all of my records and slides to him. My diagnosis was not questionable from any of the labs or doctors anyway, only the proposed treatment.

I know I want the tumor removed surgically with TORS, and I don't want to reschedule that procedure. I wasn't so sure about the MRND. As a happy coincidence though, I already had an appointment with my hematologist today, a doctor I've been with for 3 years who I trust 100% and with whom I also have great rapport. He's not a head and neck specialist but as a hematology oncologist, he knows a whole lot about lymph nodes. He also is OPEN to other ideas and wants to hear underlying reasons for opinions, even when he disagrees, before offering his advice, something that seemed lacking in my primary surgeon at Hopkins and the University doctor who called me today. He's affiliated with the smaller local hospitals but the practice he's in partners with University of Maryland for referrals on cases they don't handle. He generally encourages getting multiple opinions and was very supportive through my transplant. We talked at length today - more importantly, he listened to everything I said and also reread all of my reports from the other consultations. In the end he was supportive of the MRND and also with proceeding as soon as possible.

Having said all of that (way too verbosely, no doubt), I'm STILL interested in PERSONAL experiences regarding surgery vs. chemo and radiation, especially any "gotchas" that caused you to have regrets.

If the David you refer to is me then your correct in suspecting how I feel. With HPV+ SCC more doctors are now realizing the importance of the cancers' improved response to the radiation and chemo relative to HPV- SCC. There are many that would like to reduce the radiation by performing surgery first but that has yet to be tested so now we are left with the full amount of radiation. Even 6 years ago Moffitt told me that they would not do a ND because the radiation/chemo would do the trick. I don't even know why they/you are trying to remove the Primary? If I were you I would sit down with U of M and listen and then I would also question JH why the need for surgery with a HPV+ finding when you are getting chemo/rad? JM2&3C's

David,

Yep, I meant you :-). The reason for the surgery is to avoid altogether or at least minimize radiation and chemo because I have had so much chemo already for my other cancer and because they are worried about exacerbating my gvhd (graft versus host disease) with the radiation. The doc from University talked to me on the phone quite awhile and said basically what you did about current thinking in HPV+ tumors, which all makes good sense to me if it weren't for my extenuating circumstances. He was not offering new or different choices than I had already heard or any new data regarding my options. Surgery isn't a choice I made lightly, and if I couldn't have gotten TORS, I wouldn't haven chosen that route for the primary.

What I am going to do is talk with the radiation oncologist at Johns Hopkins again to reaffirm why he wanted to avoid radiation on me. The medical oncologist was also very specific about wanting to avoid chemo in my case.

I'm STILL interested in hearing any new information from patients' personal experiences that any of the doctors may have failed to mention.

Hi, Karen
unless you have a better crytal ball than I do, you're not going to know the optimal decision for your specific case, but it seems to me that you have made a very good decision with the information available to you. It is possible that we as caregivers and patients err in not taking the time to look at more options because we feel the clock ticking so very loudly.
I know that you take the path that you choose with courage and strength.
Maria

Karen,

I'm sure you will make the right decision for you and you do present challanges the "normal" HPV+ SCC patient doesn't bring to the table which I have NO knowledge of to even post on so excuse me for sounding so compelling. That was not my intent. Over the years I have witnessed so many unnecessary procedures on HPV+ people that I have becomed programmed to respond the way I do.

I would be interested to hear what reduced rad JH is talking about. I have recently read where some are thinking a 20% reduction in radiation (56 gys vs 70) may be the next threshold to try.