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Would you do it again?

Quark
Posts: 5
Joined: Sep 2013

My husband, who is due to start radiation soon after having tongue tumor removed is seriously considering not doing this therapy.  He is considering the quality vs quantity issue.  The liklihood of return of the cancer is a factor in this consideration.  So often we have read of the return regardless of chemo or radiation.  We are asking for honest assessments from all of you who have been through this.  Of course we know that this is a personal choice, but again, any opinions offered are valued.

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

Although you haven't given details of his malignancy, the odds are his surgery wasn't considered curative, or radiation wouldn't have been suggested.  I've been in that situation several times.  My first cancer was in 1998, BOT with a single positive node.  I had a radical neck disection and radiation.  I  did great.  Missed two weeks of work  with surgery, none with radiation.  Radiation didn't disable me at all, although for a long time I had low saliva and taste.  All that returned to normal, and I was cured from my cancer.

 

11 years later I had a second cancer,, not a retur of the first.  I had a very major surgery, which should have cured the malignancy.  Unfortunaely I had a third cancer develop a year after that, or maybe it was return off the other ina  new place.  I got chemoradiation that time.  The rads have caused some problems that may be permanent for me.  I can't eat solid food.  But other than that, I am pretty normal.  Dry mouth is still a bit off a problem, now 18 months out from treatment.  I am very functional, and I've been through more treatment by quite a bit than  most.

 

And I  am still alive, now 15 years after my original diagnosis.  My situation, and my results are exceptional, that is true.  BUT most people return to nearly normal after radiation.  And go  to live reasonable life expectancies.  Lacking the rads, many don't get to talk about it later.  I certainly have no  regrets.

Pat

fishmanpa's picture
fishmanpa
Posts: 1104
Joined: Jan 2013

Quark,

Yes, this type of cancer can return despite additional treatment. There is no way to predict what will happen. However, radiation and chemo/radiation are proven ways to eradicate microsopic cancer cells and especially in the case of chemo/radiation, a way to eradicate a stray cancer cell that has taken the lymph highway through your body. In addition. chemo is a helping hand to the radiation as platinum based chemo drugs radiosensitize the cancer cells, enabling the radiation to work better. 

I had the surgery and my surgeon was confident he got it all. However, my tumors were extracapsulated and my case was complicated by having an unknown primary. Statistically, the best chance at survival was to go with treatment. My surgeon called it a "mop up" operation. Think of it like carpet bombing. Throw everything and the kitchen sink at the cancer and hopefully you get it all and it never returns. 

You know what? Treatment sucks! It really does. I won't sugar coat it in the least. It was by far one of the most difficult things I ever endured and made my heart surgery seem like a walk in the park, but.... I wouldn't have changed a thing. The human body is amazing in how it recovers. I'm almost 5 months post treatment and getting better week by week. The long term effects of treatment eventually fade and we come to adapt to the new normal. 

For me, knowing I did everything I could to beat this beast makes it easier to accept things if it returns. I would hate to have not done everything in my power to beat it and wind up thinking "What If?" 

Positive thoughts and prayers

"T"

MarineE5
Posts: 745
Joined: Dec 2005

Yes, basically what Pat and T already mentioned. If your husband is getting radiation only, his discomfort will not really get into full swing until around week 3 or 4. Mine was more like week 4 and 5. His taste will leave him shortly after week 1. One thing to consider is that we "Cook" for another 4-8 weeks after the final treatments.

My Surgeon and Radiation Oncologist wanted to keep Chemo as a back-up in the event I had reaccurance. Which so far has not happened with my Base of Tongue. Like Pat, roughly after one year, I had another cancer get to me, which was taken care of by my BOT Surgeon as well. So, I am almost 9 years out of my 1st surgery and 8 years out of my 2nd.

My Best to Both of You and Everyone Here

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Yes, I would definitely do it again...

I had surgery to remove the tonsils...STGIII, sixteen weeks of ofur different types of chemo, and 35 daily rads sessions..., oh and injections of amifostine in my stomach each day before rads.

I'm not sure where you are reading your information on the likelyhood of cancer returning, but it's not accurate..

And as for quality of life post treatnent, versus quantity issue... Well to me, for what I've been through, and the majority of others here..., that's a crock.

 

While yes, treatment is rough, and it comes with a few longterm potential side effects. The quality of my life is actually better now with the few side effects, than it was before treatment.

The few health related things that I have from treatment are minimal. The many things I have gained as a result of cancer and treatment are huge.

I have a better appreciation of those around me, what truely matters.

Things that were once thought huge, now not so much. The things I didn't pay enough attention to, and thought not nearly enough about, are now gigantic...the people and things that truely matter.

To decide not to do anything is definitely his decision..., but not the one that I would ever make.

Best,

John 

 

CivilMatt's picture
CivilMatt
Posts: 2838
Joined: May 2012

Quark,

I was given all the choices too and selected surgery, radiation & Erbitux.  If you are saying I have a chance for a “do over”, then I want to go looking for the HPV part of the equation (and change that).

If I slayed the beast and my condition keeps improving as it has over the past 18 months, I say I got a heck of a deal, a moderate amount of discomfort for a new chance at living.  Today, my biggest issues are fatigue, lack of taste and lack of saliva, but they are all improving daily (honestly).

To make the correct choice(s) and end up cured of cancer with the least amount of side effects is everyone’s goal.  You can study this to death and do no better than someone throwing darts, it just comes down to the cancer and how well your body accepts help.  I wish it were easy and straight forward, but it is not.

Matt

phrannie51's picture
phrannie51
Posts: 3620
Joined: Mar 2012

and I can't say I didn't have second thoughts when I was first diagnosed.  I was scared for sure....the unknown is always a scary place...but reading what people had to say on here....I quit equating "dry mouth" with quality of life....I mean carrying a water bottle around doesn't seem like it even belongs in the "quality" column....neither does the fact that food isn't as good as it used to be, it's good enough.  EVERYTHING else I ever did before treatment, I'm doing now....I went back to work 6 weeks after treatment was over, I still ride my horses, I still walk my dog....there is not one thing that I used to do, that has been put on the back burner for later. 

Yes...treatment is rough...but hey, it's temporary.....once treatment is over, then it's a slow climb back to normal (or abi-normal)....but life is still out there to be enjoyed....friends, children, grandkids.....dogs, horses, trips.....it's still all out there waiting to be embraced.  He might even find something he's never done before and decide to take that on....cancer makes a bucket list something to work on early....why not? 

One of the old members told me when I first got here......"this is a bump in the road of life.....you've hit some gravel, but you'll be sailing on pavement again, soon.  BELIEVE".....I took that to heart, and saw all these other folks who had gone through what was ahead of me, and thought.....it'd be dumb to just give up.....why not give'er all I've got.  Since I've been out of treatment I've watched MANY others go through it......ask them.....how's your quality of life?  They'll tell you it's NEVER been better than now.

p

PS....we're all scared of a possible recurrance.....but with the cure rate my Dr. told me....I figure I'll get scared of one every 3 or 4 months when scan time rolls around.....inbetween, I'll just enjoy life on a daily basis....I'm delighted to be on this side of the dirt!!! Laughing

 

fisrpotpe's picture
fisrpotpe
Posts: 1320
Joined: Aug 2010

i will keep it simple, from my side of the fence

after 17 plus years, yes and i would not change anything

keep in mind, what's the first thing we hope for when told. life would be the answer

good luck with your choice, either direction will not change the support from all of us here. 

john 

donfoo's picture
donfoo
Posts: 1159
Joined: Dec 2012

Hello,

Welcome to CSN! As you state the decision lies with you and your husband only. Each person here, even ones with the exact same cancer has a unique case profile that formulated different treatment plans and different short and long term side effects.  Knowing only your husband has tongue cancer and had surgery but no idea of his medical history, medical prognosis, curative or palliative directions, standard of care adjustments due to his health challenges, makes it virtually impossible to determine his current health condition and quality of life. There are so many things not known about him I'd say the most that can be offered are personal opinions based on the slimmest of facts with personal biases, experiences, and philosophies substituting for lack of facts.

If his health is poor now, he has other chronic diseases, has lead a very long and satifying and full life, and currently endures and suffers much pain, then his reservations and reluctance about radiation treatment are understandable and rational. 

Radiation treatment alone is generally accompanied by much short term suffering but within six months most do very well. A small percentage are left with long term reduction in quality of life. If his heath is otherwise good, then his quality of life post radiation has a very good chance to be close to what it is today.

There are members here who, at various points during the course of battling cancer, decided to stop medical therapies. Some are no longer here; others are present living full and rich lives. So that is a option chosen by others too.

Hoping you the very best outcomes, don

katenorwood
Posts: 1808
Joined: May 2012

Most of us go into the dxing  with blinders on (so to speak).  We hear the C-word and it blows our minds !  I have a rare dx....not understood, and researched far and few between because there are too few of us.  But I have friends who are fighting hard with this dx....adenoid cystic carcinoma every single day.  Our type doesn't respond to rads., or chemo like most others.  In other words it's not currative....just gives us a few more years, in some cases a few more months.  (trials mainly....as mainstream traditional tx's won't touch it)  I need to clarify this.....if clear margins were not achieved during surgery, or if we have mets or a re-occurrance.  And this dx will return, anywhere from 2-20yrs.   

And I'll tell you something.....age range is all over the charts.  From late teens to late 80's.  I hear about quality over quanity alot.  But I have fought hard to find tx's, with little hope.  Please have your husband really think hard about this.  If rads or chemo or a unison of the two will knock this cancer out of the park.....yes please fight !  Facing the fact that my body can't handle anymore literally pisses me off.  As I am a fighter from the word go.

Re-occurrance is always an issue.  But with tx's and the type of dx.....life can be very, very good after the battle has been done.  Stay on board here, and continue to post.  These people have a way of throwing us all a life preserver to hang onto.  They know their stuff, and will help you two through this.  I hope he decides to fight, and I'll be keeping positives flowing for you both !   Katie       

Mikemetz's picture
Mikemetz
Posts: 334
Joined: Nov 2011

The mother of one of our best friends, and a good friend of ours has ACC.  Above the right temple, and spreading in every direction.  This is one of the most horrible kinds of cancer I know about, so if you have been fighting and surviving ACC for some time, you are one tough person!

Mike

 

Ladylacy
Posts: 462
Joined: Apr 2012

After my husband completed radiation, chemo and then surgery for laryngeal cancer, he said never again.  Radiation caused him to have to have his throat reconstructed during his laryngectomy.  Then one year later, the H&N specialist found a tumor at the cervical of his esophagus and said surgery was out.  This is a rare spot for cancer and cure rate very low.  He was offered radiation and chemo again.  I thought he wouldn't do it but to my surprise he did.  Radiation didn't cause the problems this time they did the first time.  But sadly it didn't help him.  He had a recurrence from the 2nd primary and spread to his lung.  He has decided quality or quantity of time and has been doing so-so since January.  He couldn't have any more radiation and chemo was the only thing offered.

This is a decision that is your husband's to make as hard as it seems to you.  My husband looked to me and I said whatever you decide I will go along with even though I and our sons might not agree.  At 76 more chemo would have been to harsh on his system because it would have been a stronger chemo then he had been on before and he had problems with Cisplatin, none with caroplatin.  

Wishing the best to you both -- Sharon

donfoo's picture
donfoo
Posts: 1159
Joined: Dec 2012

Sharon,

So glad he decided to fight on. Only he and his doctors can establish his current and long term state of health and as long as he has the fight in him, that is excellent!

KTeacher
Posts: 884
Joined: Jan 2011

I am a three timer, going on four.  I will have Cyberknife next week, wish it was offered last time.  Luckily I recovered the first two times, slower on number 3.  I still have too much life to live and I want to see my grandchildren grow up.  Yes, I would do it again, not fun but I know there is a light at the end of the tunnel.

robswife87's picture
robswife87
Posts: 175
Joined: Mar 2013

Rob would do it again. During treatment he said "NEVER" but I think he has had a chnage of heart now that he really did survive and found life is still good.

I hope we will never have to answer this question but he did tell me he would fight until it ended up being palliative. He won't just use treatment to extend for a few extra months, he would use that time to live it up.

Sandy

Quark
Posts: 5
Joined: Sep 2013

Thank you all for responding.  You are all super stars.  I mean it, simply stellar.  My husband has decided to go for it and keep on keepin'on.  Life!     Thanks again,  Quark

 

debbiejeanne's picture
debbiejeanne
Posts: 2259
Joined: Jan 2010

so glad, i did a happy dance around the kitchen!!!  i'll keep u both in my prayers and i pray tx isn't too rough on him.  keep us posted.

dj

TracyLynn72's picture
TracyLynn72
Posts: 644
Joined: May 2013

me this DURING, I'd probably would have said NO...I had a hard time.  The awesome people here on CSN urged me to fight and finish...they encouraged me like no one else!!  I know that I did EVERYTHING I could to be healthy again and I have to say that I would absolutely do it again.  

Eddie J
Posts: 23
Joined: Sep 2012

GOOD CHOICE WHILE HE IS GOING THRU THE DISCOMFORTS PAIN AND ETC ETC KEEP REMINDING HIM THAT HE IS ALIVE AND ABLE TO FIGHT THIS DISEASE NO TREATMENT WOULD TAKE AWAY THAT ABILITY TO FIGHT AND THE CHANCE TO SURVIVE

Ingrid K's picture
Ingrid K
Posts: 810
Joined: Mar 2011

I would MOST DEFINITELY do the whole treatment protocol again.   I lost 75% of my tongue and went thru all the radiation side effects and then some...my taste is still compromised, my face is still swollen, I lost all of my teeth, they had to break my jaw to get in there to make my new tongue, the nerves in my forearm were severed to use for my rebuilt tongue....and on and on.

I always say to anyone who asks.....I would go thru the surgery and radiation again in a heartbeat as I owe it to those who did not have the options that I had and did not survive.

The surgery and radiation treatments saved my life almost 3 years ago.

Hondo's picture
Hondo
Posts: 5636
Joined: Apr 2009

 

I took radiation twice and came out of it doing very well for a number of years afterward. The problems I have now started with a bad Mastoid infection that all my doctors overlooked for about 8 months. This is a call that you both need to just sit down and pray about. I am glad that I did what I did because I have had the opportunity to see my grandchildren and be a part of there lives, and that is worth anything.

 

God Bless

Hondo

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

hear he has decided to fight . I agree with everyone  even tho I had my last Radiation treatment 10 months ago and still have a very dry mouth and my taste is not completely back it is getting better every week now and I can eat anything except crackers and chips , just have to wash it down with lots of liquid . I have a lot of hope that I am cured that I would not have had if I hadn't had tx . My best to you and your Husband and be sure and stick around to ask any questions that come up . The people on here have been thru it and can give you lots of great advice .

Peggy

Bart T
Posts: 10
Joined: Mar 2013

Obviously a very personal and very important decision. After surgery, my surgeon felt I was borderline as to if I needed radiation or not, and suggested a consult with the radiation doctor. I’ve often wondered if asking the radiation doctor if I needed treatment was like asking a barber if I needed a haircut.

The radiation doctor recommended it, and in retrospect, probably downplayed the side effects, and I went through with the treatment. One way or another, I’ll never know if I made the right choice. If I live cancer free for another hundred years, I won’t know if it was because of the treatment, or if I would have made it that long even without the treatment.

I am now one year post treatment. The treatment was 5 days a week for six weeks. Prior to treatment, I was about six weeks post hemi-glossectomy and neck resection, feeling very good, and almost 100%  of my normal self. The treatment itself was very rough, but from what many tell me, I did better than most. I never needed a feeding tube, I never had to be hospitalized, and I never got screwed up with pain killers. I continued working for the first three weeks, but by the end felt so miserable that every morning when I woke up, I wished I hadn’t.

After one year, I’m doing 100% of my normal activities, but consider myself a safe distance away from 100% of my normal self. My quality of life has taken a hit; not a total loss, but a decent size ding. Everyone’s decision as to how much they are willing to get dinged up before they conclude it wasn’t worth it is a very personal and private decision that should be respected by others. It may be influenced by factors such spiritual or religious beliefs, age, family circumstances, other health issues, etc. A decision such as this also depends one’s risk aversion which is also a very personal choice. Some of us race motorcycles and jump out of airplanes, others of us won’t cross the street.

As to me, If it turns out that I I bought myself a batch of extra years because of the radiation, I’ d do it over again, but keep in mind I’ll never know if it was the radiation that would have bought me the extra years.

 

Whatever your husband’s decision, I wish you both the best, and trust you’ll respect and support his decision.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

It's easy to second guess when you are alive and surviving....

Me personally, I believe that you being here and participating in this conversation and forum is proof that you made the right decison...

It's a gamble I was willing to play..., how little treatment can I get away with and still have favorable long term results.

Best,

John

Duggie88's picture
Duggie88
Posts: 524
Joined: Feb 2010

In a heartbeat. You betcha. Without a doubt. No questions asked. Where do I stand in line. Without hesitation.

 

I hope this helps

      Jeff

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