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Advice needed -- doctors disagree

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Hi, everyone.  I have received two different treatment recommendations for my

Tx, N2c, M0 metastatic squamous cell carcinoma with unknown primary.  Do any of you have advice on the pros and cons of the two options?  Here they are:

1. Mayo Clinic is recommending doing a single robotic surgery to remove affected lymph nodes on both sides of my neck, do biopsies of tongue, tonsils and throat, and try to locate the primary source of cancer and remove the cancerous tissue.  After the surgery, they are recommending radiation only.  This is different from the standard treatment according to the Comprehensive Cancer Center Network guidelines,but they are recommending the lymph node removal because they have the robotic surgery equipment that makes the surgery less invasive and with shorter recovery times.  I don't know why they are recommending only radiation and no chemo.  I have asked about this.

2. The Humphrey Cancer Center is following the CCCN guidelines and recommending not removing the lymph nodes, but doing a tonsillectomy and biopsies to try to identify the primary source of cancer and then do a combination of chemotherapy and radiation treatment.  After this, I would get another PET scan and if there is still cancer in my lymph nodes or other site, they would do surgery to remove the cancerous tissue.

To make this more complicated, I learned that a friend of mine had the same diagnosis as me a few years ago (metastatic SCC with unknown primary site) and she had surgery to remove the lymph nodes and do the biopsies but they did not find the primary site.  What is unusual is that she did not receive any radiation or chemotherapy treatment afterwards.  She is cancer free after more than one year.

Maybe I need a third opinion!!??

Michael

 

 

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I honestly think I'd get a 3rd opinion. I would be too confused at these 2 treatment plans to make a decision. I guess both of these options could be the right way to go but I just would not be able to make a decision if I were you.
In my case I had a biopsy and my surgeon came out and said that I'd need chemo and rads in his opinion but it would be the onc's who would finalize that plan. Both of my onc's agreed and so for me it was easy, all 3 said the same thing.
If for nothing else than piece of mind, I'd get the 3rd opinion.
As for your friend, she is very very lucky but she really needs to stay on top of that and get regular re checks. Hers is a more rare occurrence and if I were you I wouldn't consider that an option at this point.

Good luck and please keep us posted.
Billie

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

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

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Michael,

I have a friend who went through this too. He initially sought treatment locally (at the same hospital I started at) for BOT SCC cancer. They recommended removal of the tumor and nothing else. Well, the cancer came back with a vengence within a year! 

So, long story short, he went to Johns Hopkins. It was he and his partner (who sings with me in a duo) that recommended Johns Hopkins.JH recommended the same thing that Mayo did for you and for me. For me personally? After my 2nd opinion and looking up the doctors involved I felt very confident seeking treatment at JH. It was a gut feeling. When three oncologists, highly respected in their field, along with several other team members come in, poke and prod you for 25 minutes, go over all the details of your case and agree, it certainly envokes a level of confidence. Since then, everything that has taken place has been coordinated and spot on. I've never seen such responsiveness from a hospital or doctors before. My friend is now 18 months NED. 

I don't find it unusual or a coincidence that the recommendations at JH and Mayo are the same being they're tops in their field. The only exception is the chemo. I can tell you that I was told rads only unless the tumors had broken through their capsules (which they did). You said you asked about chemo and didn't get an answer? I also don't find it unusual that Humphrey is recommending what they are as that is what was initially recommended for me as well. For me, it was a gut feeling that they were just following protocol and hoping for the best. At JH, I felt they were much more aggressive and pro-active in going after the beast. 

Anyway... you have to feel comfortable and confident in the team and facility treating you. That's the bottom line. What does your gut tell you? I've learned to trust that feeling. 

"T"

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

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

 

 

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

a third opion might be the way to go....the only "option" you've mentioned that I would be totally uncomfortable with is your friend who had no chemo and no radiation...that one would make me VERY nervous.

I think the neck dissection is possibly a 50/50 thing with different Dr.'s having a preference.  Some Dr.'s see the lymph node involvement and instantly go for the dissection.....some (like mine), decide to go for radiation and chemo.....with a PET scan at 3 months to see if those two treatments will knock out the lymph node involvement....if it doesn't they will do the dissection at that time.  The problem is tho....IF the lymph nodes light up after radiation, surgery is harder due to the changes in the tissue that rads can cause.  When I started treatment, the node on one side of my neck was at least the size of a golf ball....but the third week of rads....it was almost gone....and it was gone totally by the 5th week.  PET scan at 90 days after treatment showed no cancer at all in my nodes. 

The thing I don't get about the Mayo's thoughts on treatment is why....with two lymph nodes involved are they saying no chemo.....radiation will kill the cells within it's striking range....but chemo sets those cells up to die....plus, it mops up anything that might have escaped the nodes....

p

corleone's picture
corleone
Posts: 144
Joined: Jul 2012

Hi Michael,

Obviously you need a third opinion, hoping that would match any of the 2 above. If again different, you’d need 4th. 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.

 

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

in a more scientific and knowledgable way than I can say it Laughing.  I was thinking too.....if I'm going to already feel crappy, why not add the chemo.....and give me the extra security of not facing this again? 

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

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

MarineE5
Posts: 744
Joined: Dec 2005

Michael,

The advice by the others is spot on. I'll keep my reply short by stating this. If I had to make a choice between the 2 that you posted, I would select option 1 the Mayo clinic option. I had 2 nodes involved on my right side, which I had found on my own when the lymphnode was maybe the size of a BB. By the time I finally had the surgery, 2 lymphnodes were involved, no leakage, so no Chemo. Radiation only. That was over 8 years ago.

Cancer was my enemy, I wanted it our of me, attack.....

My Best to You and Everyone Here

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

I agree Marine...

I have a true unkown primary. Two tonsillectomies, biopsies and laryngoscopies didn't find the enemy. So the hell with the primary, let's just go for it! I had nodes taking over in my neck. It looked like I had the mumps! I wanted "Jack" out of me! My ENT/Surgical Oncologist is confident he got it all out. He said the chemo/rads are a "mop up" operation and insurance that we get anything else too small to see. 

Congrats on 8 years!

"T"

 

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

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

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

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

katenorwood
Posts: 1804
Joined: May 2012

Michael,

We have different dx's, but the same mind set.  Information can only take us onto uncharted waters.  We need to write down what we don't understand or have questions on and ask the experts.  Saying this you have to trust your team.  Do you ?  That's exactly what it comes down to.  I like and agree w/Pat's post.  Everyone has a different approach on how they come to terms with this.  Trust your instincts, and trust your team.  Continue to let us know how you're doing, and remember alot of the group has vast experience with what you're going through !  Katie 

debbiejeanne's picture
debbiejeanne
Posts: 2227
Joined: Jan 2010

i had cancer of the voice box and only received 35 rad trmnts, no chemo.  1 1/2 years after finishing trmnts the cancer was back at a stage 3.  i will always wonder if it would have come back if i'd received chemo also.  since then i've had a complete laaryngectomy and i hate it.  if i had it to do over i would ppush for the chemo.  at the time, i just didn't know enuf. 

whatever you decide,  you will be in my prayers.

God bless and may he help you make this difficult decision.

deb

CivilMatt's picture
CivilMatt
Posts: 2807
Joined: May 2012

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

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