Risk taking?

Beth,

Welcome to the H&N forum, where being bonkers gives you the edge.

I had all the choices you did and chose surgery, radiation & Erbitux.  I  wanted the cancer gone , gone , gone.  If I had a do over, I would make the same selection.  What swayed my decision was when the ENT spoke of residual cancer cells left behind, that is when I said  let’s do it.

If your team is good and they keep you on a short leash, it is more than likely they will catch a reoccurrence in time.

Cancer is bad stuff, you need to pin your ENT down on the seriousness of your choices.  Throw the what if it was your Mom or wife, what would he say then.  You really need to squeeze your team for the drop dead truth.

It is possible you could shoot yourself in the foot, but I hope not.  Rads change your way of living (hopefully temporarily), they test you on your resolve.  Today, things are much better and improving all the time.

Matt

hoppere said:

Muchas gracias

Thanks, Pat.

 

I appreciate your input. So far I've seen two doctors who are on the Adenocystic Carcinoma Research Foundation site (one in Illinois and the other in Indiana), spoke with three radiation oncologists, and two medical oncologists. Although some of them say to do the radiation, they can't say any reason why other than its "standard of care". They know it will come back regardless. I also understand that I'm limiting my chances of doing radiation again if I do it now.

Beth

Sorry you had the need to find our site but glad you did. I'm SCC and currently dealing with a recurrance. I had surgery of the jaw with clear margins, rads and chemo but seems some microscopic cells got thru to my carotid cavity and by the time found were inoperable. I just finished SBRT tx at Mayo. The original radiation was pretty hard on me. My first instinct would be to save the rads. In my situation, I have to wonder if those horrible rads helped keep this recent tumor at bay for awhile???? Dr. at Mayo said "don't let anyone tell you that you can't be radiated twice". There are several here with multiple radiation tx.

Prayers for the strength and guidance to make the right decision for you.

Candi in STL 

hoppere said:

Thanks

Matt,

 

I truly appreciate your candor. I actually did pull the if it was your wife/daughter card and he said, "Ya know, that's a tough question and the right one to ask. But I don't have to answer because it depends more on your personality. If it comes back five years down the line, will you beat yourself up about it. Or are you comfortable with the decisions you make now?" Here are my thoughts on this: it's coming back regardless. Even as I read all of your posts, I know that because of the fact that the tumor was solid, there was perineural invasion, and some lymph nodes were involved, there's no doubt it's coming back. I guess I'm thinking that I'm buying myself some time between now and next time for there to be more positive results from a clin iCal trial to where I can jump in after I do radiation the next time. From what I've read and several doctors say, this cancer isn't all that radio sensitive, right? Have you had it come back yet? Or are you currently in the clear? 

Sorry for the questions but I'm trying to gauge people's experiences.

 

Beth

Just read your reply to Matt.  To answer a few of your questions.....we are either NED (no evidence of disease.....) or stable condition (meaning they couldn't get it all, but it's slow growing) or in mets.  In my head and neck area I'm in stable disease.  My lungs aren't in as good of shape.  You have connected with a wonderful support group already, and our gang here is fabulous.  Our dx is rare....not well studied, with few ready answers.  Pathology.....make sure you get the proper answers......ours is made up of cribform.....tubular....solid.....mainly all three.  (this would come under the term histology.  I have done a tumor profile.....but in my case, no matching trials at this time.  Don't think past the positives for today.  That is a dark place to be in, and man we waste alot of precious time.  Stay in the know, and keep all your records.  As with many dx's sometimes need 2nd or 3rd opinions.

Radiation.....chemo.....not really good evidence as of today it will make a difference.  But still your choice.  Know your team, trust in your choices.  Again I'm here to try to give some advice, and I know the walk your on.  Hugs sent !  Katie   

katenorwood said:

Hello Beth !

I too have adenoid cystic carcinoma.  Mine was in my right submandiblar gland.....after surgery I was told they didn't get clear margins.  So I attempted radiation.  Later communicated with an org. that has the much needed information you should have.  www.accoi.org and www.accrf.org both have current up to date information for you and your doctors.  If they were able to get clear margins with surgery you should be good to go !  A few others on site have our dx....and were able to complete rads.  They will probably pop in here.  Also I don't know if you use FB at all, but there is a group there too with good info. for you !  Re-occurrance.....yeap, but sometimes not for many, many years !  If you have any questions....I'm here always.  Remember we are our best advocates, and knowledge is power !  Best of luck !   Katie

Hi Beth,

I had the same dilemma and to this day I sometimes wonder if i chose the right path. I went with radiation but there are lot of side effects of radiation and sometimes i wonder which path is best.  i did have a very small .01 cells seen in my lymph nodes so my doc said to go with radiation. 

i would say take two additional different docotros opinion (insurance covers two, you can talk to them to see if they will add third). 

also look into diffent type of radiation e.g. Proton radiation that seems to much lesser side effects.

if you are still in dilemma, i would say go for the radiation. Yes, you will suffer but have a gurantee that cancer is gone. It is tough choice, since tumour is gone, you may want to take some time to think it thru.

sam

In your second post you mention that you know it is coming back. A big part or most of the battle is a positive attitude. That being said if YOUR opinion is it will come back then kick it's **** now and do the radiation. My surgeon told me he was sure he got it all but to make sure he suggested radiation. He didn't sugar coat it and told me I was going to have a couple of months of hell. I chose hell and kicking some  ****. As Matt stated I would do it all again in a heart beat. The minor losses caused by radiation out weigh the big loss.

Just my $.02

      Jeff