Advice needed -- doctors disagree

Michael,
As much as I hated
Michael,

As much as I hated doctors poking and proding I would get third opinion. During my process with NPC scc III in 2000 all three agreed on org. Evaulation surgery where if it had spread to tonsils I would have woke up without them and org. Peg tube inserted. Chemo and rads where next. Later in surgery my ENT surgeon(head od h\ cancer at univ. Penn) disagreed twice. My rad thought he still saw rements of tumer in nasal cavity and wanted to put me in hsopital with tubes in nose and put balls of rad firectly in and quarenteen me for 3 or 4 days, said it would be very uncomfortable. Surgeon said it was scar tissue but it wouldn't hurt so wouldn't stand up to rad, ill cut to chase on this one God made a situation where I had really bad night prior to trearment and it was canceled, next time I saw rad doc it was apparent it was scar tissue and whole thing never happened, whew! Then at end the partial radical neck dissection, hemo onc and rad onc thought unessessary, all scans showed clean, surgeon said do it or get out of my office and I was my hands of you. I did it with no regrets. At first I wanted to side with two who said no, I was 29 and vanity was ruling and cancer was gone, but I figured with surgery it give the animal no nodes to come back too, so I went through with it and no regrets.

I hope this helps, sometimes they disagree, but somewhere in your soul you know which is right, if you feel confused I would take that clue and get third opinion and for love of God I hope he agrees with one of them. You have to 100% trust your team, you can't go in hoping he's right, you can't afford any negatiive thoughts, it takes a lot of positive energy to beat this animal, and Michael we will definitely give you all you need!

God Bless netw friend and keep us updated,

Rachel

Here's the problem

Sometimes too much is made of obtaining these multiple opinions.  There is NOT a standard treatment for this situation.  If there were, then everyone would be treated the same.  If you continue to collect opinions,  then you will find there are yet more approaches to this, thereby furthering your confusion.    The failure is in assumning that one of these treatments is necessarily the right one.  There isn't a trap awaiting you here.  Pick one and proceed.  The only exception to what I've just said is how your friend was treated.  If you really understand that she had no treatment beyond removing metastatic nodes, then she was inadequately treated.  There is NO evvidence that what was done to her is acceptable.  The fact that she is a year out is not long enough to say she is cured.  She very likely is not.

 

At some point you need to move forward.  I realize my advice is different than the other posters in this, but I feel firmly that you are better picking from a small number of well thought out alternatives, not collecting a bunch more to make your indecision worse.

 

best to you

 

Pat

 

 

3rd opinion

Hi Michael,

Obviously you need a third opinion, hoping that would match any of the 2 above. If again different, you’d need 4^th. Hope not.

Personally, if I had to choose among n options, I would go with less invasive surgical procedure, and combination (concurrent) chemo and radiation. The reason is that surgery cannot locate (let alone eliminate) minor foci of tumor growth. Radiation or chemo alone can do that (of course, radiation limited at the field of radiation). In addition, concurrent chemo and radiation is more effective than radiation or chemo alone or in succession, because chemo acts as a radiation sensitizer. The drawback is much more side effects, but if the intent is to cure the disease, it is worth it.

 

MICH4EL said:

Thanks, all

Your responses were very helpful.  I think I need to accept that chem-radiation is the best approach and hope that the biopsies identify the primary source so the radiation can be more localized.  Also, I am still thinking that getting the nodes out is a good step and if the robotic surgery is less invasive and recovery faster than conventional neck dissection, why not do that at the same time as the biopsies?

I still hope to get a third opinion.  A work colleague's husband is an oncologist at yet another cancer center and he is going to have his surgeon and radiology oncologist take a look at my situation and give me some advice.

Michael

Sorry to be the fly in the ointment

Just to remind you I am/was SCC BOT N2C Stage 4 in that lymph nodes on both sides of my neck were involved.  I went to one of the top robotic ENT surgeons in Dallas who found my primary and then said that his treatment was to remove the primary then remove the infected nodes on both sides of my neck.  The key here is both sides of the neck.  He went into great detail about the surgery in that he would effectively be making an incision (robot) from ear to ear.  At that point I asked him what he would do if I was his brother and he told me to go and get a second opinion from MD Anderson in Houston.  I went down to houston and spent two amazing days at MDA and saw everyone from the head of Surgery (who is also the director of the Head and Neck Program) to a MO, a RO, had a camera shoved down my nose to take movies of my throat and had a CT.  On the third day the tumor board met and said NO surgery, Induction Chemo and Rads.  My lead doc was the surgeon and I asked him why no surgery and his answer was with both sides infected there is a greater chance that some cancer cells have escaped (or will escape during surgery) than they were comfortable with and they have a 95% + sucess rate with this protocol.  

I went back to Dallas and called my ENT Surgeon and told him their findings and he then suggested, before anything else, that I talk to a local Head & Neck Oncologist at Baylor Hostpital in Dallas.  I saw the Doc two days later and he convinced me that the Anderson protocol was my best chance of sucess.  Again the reason was lymph nodes infected ON BOTH SIDES.  I decided to have the chemo/rads with the Induction Chemo first over a 9 week period.  At the end of the chemo they could find no trace of my disease anywhere.  Rads followed as a big time insurance policy.

So, here's what I'm trying to get to.  You have N2C disease, both sides infected.  Sure, it would be great if the primary could be located but like so many others here, that just doesn't happen all the time.  Often, you own body will destroy the tumor but not before some of the cells have escaped.  Chemo, almost always will kill any of the cells that are loose in your body, not just in your neck.  The Rads will try to insure they don't return.  So, would I have surgery to try and find the primary, for sure.  Would I have surgery to do anything else, not before speaking with a good head and neck oncologist.

Again,  just one guys opinion.  Your experience may vary

Joe

jcortney said:

Sorry to be the fly in the ointment

Just to remind you I am/was SCC BOT N2C Stage 4 in that lymph nodes on both sides of my neck were involved.  I went to one of the top robotic ENT surgeons in Dallas who found my primary and then said that his treatment was to remove the primary then remove the infected nodes on both sides of my neck.  The key here is both sides of the neck.  He went into great detail about the surgery in that he would effectively be making an incision (robot) from ear to ear.  At that point I asked him what he would do if I was his brother and he told me to go and get a second opinion from MD Anderson in Houston.  I went down to houston and spent two amazing days at MDA and saw everyone from the head of Surgery (who is also the director of the Head and Neck Program) to a MO, a RO, had a camera shoved down my nose to take movies of my throat and had a CT.  On the third day the tumor board met and said NO surgery, Induction Chemo and Rads.  My lead doc was the surgeon and I asked him why no surgery and his answer was with both sides infected there is a greater chance that some cancer cells have escaped (or will escape during surgery) than they were comfortable with and they have a 95% + sucess rate with this protocol.  

I went back to Dallas and called my ENT Surgeon and told him their findings and he then suggested, before anything else, that I talk to a local Head & Neck Oncologist at Baylor Hostpital in Dallas.  I saw the Doc two days later and he convinced me that the Anderson protocol was my best chance of sucess.  Again the reason was lymph nodes infected ON BOTH SIDES.  I decided to have the chemo/rads with the Induction Chemo first over a 9 week period.  At the end of the chemo they could find no trace of my disease anywhere.  Rads followed as a big time insurance policy.

So, here's what I'm trying to get to.  You have N2C disease, both sides infected.  Sure, it would be great if the primary could be located but like so many others here, that just doesn't happen all the time.  Often, you own body will destroy the tumor but not before some of the cells have escaped.  Chemo, almost always will kill any of the cells that are loose in your body, not just in your neck.  The Rads will try to insure they don't return.  So, would I have surgery to try and find the primary, for sure.  Would I have surgery to do anything else, not before speaking with a good head and neck oncologist.

Again,  just one guys opinion.  Your experience may vary

Joe

Maybe this is why my ENT

chose to wait on a dissection?  I had two nodes also, one on both sides of my neck.....all of my Doc's...the Onc, the RO, and the ENT went along with waiting.

p

up to you

Michael,

 

This can be a difficult decision for you.  I was given a selection of choices and I chose “all the above” (surgery, radiation & Erbitux).  While each of the H&N members may have similar cancers, none of our plans are or were exactly the same, but that is no guarantee of one treatment plan over another.

 

One of the most important decisions of your life and the balls in your court, there is no 100% correct choices; you just do the best you can.  Which ever path you select the final outcome will more than likely rid you of the beast.

 

Best of luck making your selection.

 

Matt