Would you do it again?

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"

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 

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!!!

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

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

KTeacher said:

And again and again!

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.

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 said:

Do It Again

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

 

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

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

Ladylacy said:

Do it again

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

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!

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.