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.

David,

The scariest part is that the oncologists are so specialized and so compartmentalized in their specialties that even they seem to know next to nothing about each others specialties. This is not a time when I'm happy about being on the bleeding edge.

My brother had the TORS done with the hope of having reduced radiation on the back end. This was absolutely outside the protocol at MD Anderson where they were recommending all radiation and chemo but his surgeon was able to prevail at the tumor board and that�s the way they went.
They were closing him up when the surgeon noticed a small stringer of material that turned out to be additional cancer that did not show up on the scans.
They had hoped to do 55 Gy. Of radiation after the surgery but after noticing the small stringer, they ended up doing the whole 70 Gy. That the rest of us have had. The tumor was just above the voice box about grape size.

Thanks for the info, Kelly. Hindsight. If only we had crystal balls to predict our outcomes! Is he regretful that had the TORS or simply disappointed that it wasn't enough (not that it matters much in the end, I suppose)? Sometimes it is best to go contrary to the standard but oh so hard to know when. I also tend to be cursed with overthinking everything.

Wow, you and your brother both had head and neck cancers? Is there other family history for this? I was surprised my tumor is HPV+ because my grandmother died from oral cancer plus I was a heavy smoker for a lot of years.

My first cousin had a tumor in the same place my brother did but I have 8 other siblings with no problems at all.

When I was diagnosed with the recurrance I was talking with my brother and he said his throat was bothering him just a bit. I told him that I would hound him every day until he got it checked out. Thats when he found out he had cancer.

Good thing we have a big family as they were working double time going back and forth between Texas and Michigan helping us both out. I started treatment first with my brother following by a month.

Karen, I haven't gone through the surgery yet (it's on Thursday), but my doc (one of the best around) advocates the surgery as a necessity. My personal view is that I want them to do everything possible to kick this bitch to the curb so it doesn't come back, and he is of the same view, so surgery first, then the the chemo/rad to kill off the stragglers.

Not sure if that helps as I haven't been through it yet, but for what it's worth, that's my view.

All my best to you!

Karen, all I can do is give you our experience. My husband got 3 opinions:

1. Mayo Clinic; surgery then chemo and radiation (this from the ENT/surgeon)

2. MD Anderson: first plan, surgery, then chemo. second plan, chemo then surgery, then radiation

3. University of Chicago: chemo then chemoradiation. Surgery only as a salvage procedure.

It was very interesting, every other patient we saw at Mayo had obviously had major surgery, giving us the impression that hospital leaned more towards surgical solutions. We did not care for the rad onc at MDA (at all!) and their vacilating plans made us uneasy. We went with U of C because their plan made the most sense to us as my husband's cancer was HPV+ and responds very well to this kind of treatment. Best of luck in your decision, I know it's not at all easy. Ana

Thanks for all the input! Based on both empirical and anecdotal data, I'm pretty much convinced that chemoradiotherapy is the best first line treatment for most HPV+ cases. Nonetheless, in my case, I've decided to proceed with the surgery. I spoke at length with my RO who is also the head of my multidisciplinary team at Johns Hopkins. They're concerned about the potential for a combo of radiation and chemo having a negative impact on my MDS (possible relapse) or my graft versus host disease (possible exacerbation). Thus, they hope to avoid chemo altogether. They'll make a recommendation about radiation after the status of my lymph nodes is confirmed. If deemed advisable, they still hope to use a slightly reduced dose. I'm already at high risk for MDS relapse because I had multiple complex chromosome abnormalities and all three cell lines affected. I guess I'll also be at higher risk for scc recurrence without the chemo. It feels like I'm walking a tightrope here! Unfortunately, there's a lot of guesswork involved due to the rarity of this combination of factors. I'm wearing my lab rat t-shirt I got at NIH last year when I volunteered for their graft vs. host disease study. I never dreamed that my rat career would grow more extensive.

Karen,

My first go around with this disease was treated with radiation only (no chemo). That was to my primary site in the soft palet. That cancer never returned. My recurrence was in a lymph node in my neck. I'll have to assume that a few cells got away from the primary and the radiation they did give me to the neck missed them or was ineffective.

Anyhow; although we spend a great deal of time on these boards discussing the different chemo options, effects, and effectiveness and so on, chemo is only a small part of the equation. It�s the radiation and surgery that carries the big load on killing the cancer, chemo only weakens it and not by that much. I have heard we can get up to a 10% boost to our survivability rate over 5 years with the addition of chemo, but my MO said he only figures in 5% given all the variable studies he has seen. I was never that worried about the chemo side of things as I wanted to make sure I was choosing the right BIG GUN to kill the cancer radiation wise. I have done both IMRT and Cyberknife. I would spend more time with your doctors discussing the radiation methodologies than worrying about chemo. There are a number of different options on the radiation side you can look at and I would make sure your team has considered all of them.

I found that some institutions will not consider different radiation options because they do not have the equipment on site. I was at University of Michigan and after the IMRT treatments left some residual cancer they called the game. They had me in for my palliative chemo meeting where they effectively were telling me I only had a short time left to live and the chemo would give me an extra few months. Two weeks later I was getting cyberknife treatments at the University of Pittsburgh. I finished that up with a clear scan a few months ago and will go back for my 6 month PET at the end of this month (just about the time U of M said I would be getting close to dying). U of M did not have Cyberkife technology in house.

Kelly,

I truly hope you keep telling this story, not to give false hopes to people who can't be cured but to spur those on who need to advocate for themselves and seek other opinions before throwing in the towel.

I think I speak for all of us here that we are elated that you are still here with us and we are rooting for that clear "Halloween" scan.

Deb

Kelly,

Everything Deb said and more! Thank you for the excellent suggestions and ideas.

Karen

Kelly,

Wow, I'm so happy for you that you didn't sit there and let them put you on palliative care. Were your doctors not aware of procedures that were taking place outside of their facility? Just because they don't have the equipment doesn't mean they shouldn't educate the patient of their real options. I'm glad you knew well enough to look elswhere because I am sure there are plenty of people out there who don't. I hope they all find this site and realize that they are not limited by the abilities of their current facility.

Penny,

Actually it was another doctor at U of M that told me about the University of Pittsburgh. After they discovered that I had residual cancer it was thought I could have surgery to remove it. It was the radiation oncologist who called me and told me that the surgical staff had decided that surgery was not an option (the tumor was too close to an artery). When I asked him what my options were, he told me they had scheduled me to see the Medical Oncologist in three weeks to begin palliative care. It was at that point that I asked him for recommendations on a where I could go to get a second opinion. He told me he would recommend the University of Pittsburgh and Sloan Kettering. He did say that Sloan might have a surgeon willing to take me on but did not tell me why he recommended Pitt.

I found out later that the head ENT at Pitt sat on a board with my RO at U of M and was aware of their program with cyberknife. I used the three weeks between the bad news and the MO meeting at U of M to travel to MD Anderson in Houston, Pitt in Pittsburgh and Sloan Kettering in NYC, so I had options in mind before I got back to Michigan. I attended that meeting mostly to get my MO�s opinion regarding my options because I really trusted his judgment. He was only casually aware of the cyberknife treatments being offered for recurrences. He did not think it would work but admitted he had not read any of the literature out there regarding cyberknife as a course of treatment for recurrent cancer. I asked him if they had cyberknife at U of M and he said they did but it was not being used in head and neck treatments and he had no familiarity with it as an option.

So I guess the take away from all I went through is that certain institutions get all wrapped up in their own standard course of treatment or whatever trials for new treatments THEY offer but are not well informed about what else is out there in the wider world. I had to get on my horse and ride to find that out. I went to Pitt because my RO said it was an option. I had no idea why until they told me what they were doing by email just before I got there. I�m glad I kept looking for more options as I may now be able to attain the one goal I set for myself when I was first told I had cancer. I want to see my son graduate from high school. He just entered his sophomore year.

What about Univ of Chicago? They are supposed o be great and you are near them it sounds like.....

I never made it to U f C although I have a friend who is a doctor there. I should have checked them out but I was going on the recomendations of the doctors familiar with my case ( not that that is a good thing as I found out). I only had so much time to work with.