CSN Login
Members Online: 9

Risk taking?

hoppere's picture
hoppere
Posts: 17
Joined: Sep 2013

Hi all!

I've recently been diagnosed with adenocystic carcinoma. I found what I thought was a swollen gland on my neck and after a couple of months went to the doctor. After trying some things like an antibiotic and pilocarpine over several months, I finally talked my doctor into removing it. That's when he discovered it was a tumor, not a land. I've been fortunate enough to find an ENT/surgeon whom I feel very confident in as he went back in and got clear margins as well as removed lymph nodes. At this point, he says radiation is up to me whether I do it now or not as there is no evidence of tumor now. I know the high likelihood of recurrence so I'm wondering if I should wait for the next time around and do radiation then. I kind of see it in stages; first do surgery, then do surgery and radiation, then do surgery, radiation, and chemotherapy or clinical trial the third time around. Thoughts! Am I bonkers for this Line of thinking. I just don't want shoot myself in the foot now when I might need the radiation card later. Any experience would be greatly appreciated.

Thanks,

Beth

CivilMatt's picture
CivilMatt
Posts: 3068
Joined: May 2012

 

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's picture
hoppere
Posts: 17
Joined: Sep 2013

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

katenorwood
Posts: 1853
Joined: May 2012

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   

hoppere's picture
hoppere
Posts: 17
Joined: Sep 2013

Thanks, Katie! I did think about a tumor profile but haven't gone anywhere with that. From my readings, since I had a solid tumor with perineural invasion and lymph node involvement, it seemed as if radiation doesn't  have proven effects. This prompted my thoughts to hold off. I'm really hoping to a find more about results of various clinical trials.

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

You have clearly given this a lot of thought, and have already educated yourself as to the pros and cons of various approaches to this.  As you know, your tumor behaves diffferently than the run of the mill SCC.  In SCC it makes a lot of sense to go full court press right off the bat.  In your case, though, a strong argument can be made to not spend all your ammunition right off the bat.  Were I you, I'd make sure I got the best opinions I could avail myself to.  And if you are already convinced you have done that, personally I'd be tempted to do exacttly what you are proposing--- hold off on radiation until  the day comes you have a real need for it.    That's just my personal opinion, others may differ.  There certainly are others here with adenoid cystic carcinoma, but most of us are ordinary SCC patients, so it may take a few days for others like you to find your post.

 

Welcome to the board.

 

Pat

hoppere's picture
hoppere
Posts: 17
Joined: Sep 2013

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

hwt's picture
hwt
Posts: 1991
Joined: Jun 2012

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's picture
hoppere
Posts: 17
Joined: Sep 2013

Thanks, Candi! I appreciate feedback and appreciate your relaying the message about getting radiation twice.

meaganb's picture
meaganb
Posts: 234
Joined: May 2012

I was diagnosed with Adenoid Cystic Carcinoma last year. My tumor had invaded a nerve so I opted for radiation. It was tough, but I got through it. I tend to disagree with the mindset of "its going to come back so why not wait till next time to treat aggressively?" Even with the stats I've looked at there are still 40% of people who don't have recurrance 15 years out. It does tend to cone back after longer period of time which is different from most cancers, but no one can say without a doubt it will come back. Personally, I am glad I went through with Rads. I know I did everything I could to kill any lingering cancer cells even though surgery showed clear margins. Obviously,you have to make the best decision for yourself, but I am glad I treated mine aggressively.

hoppere's picture
hoppere
Posts: 17
Joined: Sep 2013

Megan, this is a good point about 40% not recurring 15years out. Food for thought.

hoppere's picture
hoppere
Posts: 17
Joined: Sep 2013

Megan, this is a good point about 40% into recurring 15years out. Food for thought.

katenorwood
Posts: 1853
Joined: May 2012

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

Sam999
Posts: 307
Joined: Mar 2012

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

hoppere's picture
hoppere
Posts: 17
Joined: Sep 2013

I do think taking time to think it through is my best option. Thanks!

CivilMatt's picture
CivilMatt
Posts: 3068
Joined: May 2012

Beth,

As mentioned by Pat, I am one of the SSC peeps here.  So far at 18 months post I am NED with no reoccurrence.

Also as Pat mentioned (and you know) ACC follows a different path and different treatment train.   It sounds like you have a sharp team and you have confidence in them.  Either way you go on radiation you will be under close watch and will do well.

It sure doesn't hurt to have rads at the ready.

Best of luck.

Matt

hoppere's picture
hoppere
Posts: 17
Joined: Sep 2013

Thanks again, Matt. And yes, I'm very comfortable with my team.

Duggie88's picture
Duggie88
Posts: 557
Joined: Feb 2010

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 ass 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  ass. 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

hoppere's picture
hoppere
Posts: 17
Joined: Sep 2013

I appreciate those two cents or I wouldn't have asked for it, so thank you for sharing your experience. Perhaps I sounded more gloom and doom than I meant to. I merely know that "statistically" it's likly to return. Now realistically, I KNOW that God is in control of this. Therefore He could decide to cure me. As such, why not trust in Him? If He deems it appropriate for me endure this trial again, then I can do radiation at that point. That's my thinking right now anyway. Don't get me wrong, I want to beat this.  I'm not even afraid of the radiation side effects. I'm honestly up for the weightless! but I want to be sure it's really what I should do to really be effective. Again, I appreciate the feedback from everyone.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network