are there alternatives to radiation?

Hi,

I have a cousin that is going through this same situation as you have stated. He had cancer under his tongue removed along with his lymph nodes. They are recommending radiation and chemo.

Our family has a history of Cancer in the family. My Grandmother and aunt both died from side effects from the radiation (not the cancer) but I've been told that the treatment has come along way since the 1990's.

I'm reaching out to the people that previously posted on here to see if they have any advice for my cousin since they've been through this already.

Thanks,

Cliff

about did I really want to jump into this conversation.  I had/have SCC/BOT/N2C/Stage 4.  I was diagnosed last September and finished treatment of Induction Chemo/30 RADs on February 1st of this year.  When I was finished with the Induction Chemo my tumor and all signs of the disease in my lymph nodes had disappeared.  Before I started Radiation I had an appointment with my  ENT and he was of course really pleased with lack of any evidence of disease.  I asked him did I really need the radiation since every indication showed I was no longer infected.  His answer was stunning and remember, he had no skin in the game as he had no association with the Rad Onc.  He said "I've only had three patients with this disease that opted to not have radiation after they were completely cleared by chemo.  One I never heard from again, one is fine and one is the only patient I've ever lost to this disease".  He too told me that there was a 98% chance of CURE if I took the RADs and a coin toss if I didn't. Needless to say my decision was an easy one even though I would have done anything to avoid the RADs.

Good luck in whatever you decide.

Joe

Concerned Family Member said:

Looking for advice for my cousin...

Hi,

I have a cousin that is going through this same situation as you have stated. He had cancer under his tongue removed along with his lymph nodes. They are recommending radiation and chemo.

Our family has a history of Cancer in the family. My Grandmother and aunt both died from side effects from the radiation (not the cancer) but I've been told that the treatment has come along way since the 1990's.

I'm reaching out to the people that previously posted on here to see if they have any advice for my cousin since they've been through this already.

 

Thanks,

 

Cliff

Radiation has changed a lot in the four years since I finshed with IMRT...

I guess the logical approach would be to learn as much as you can on the odds of which will do you in first..., cancer or side effects from treatment, or which you have the most longevity with.

Best,

John

hwt said:

Buschmann

Your cousin is lucky to have you searching for info to make an educated decision. My cancer was in the lymph nodes so I didn't have a choice. When I asked my doctor about other options, he said I could do nothing and wait to go to hospice. If the cancer had not been in the lymph nodes, I think I would have waited and if there were a reoccurance, I would have done it then. I have been cancer free a year this month.

I was diagnosed with Squamous Cell Carcinoma in the tongue and the PET Scan showed signs that it was in the lymph nodes in my neck also. This was in March 2013, I had surgery on April 9th at which time they removed all of my teeth, a small portion of my tongue, one saliva gland, and a neck dissection. The surgeon was amazed that the tumor was much smaller than expected and lo and behold that all of the nodes came back negative for cancer. I have been contemplating radiation with my wife  and it seems that there are not clear answers whether I should get this done now or see how everything goes for a couple of months. The surgeon says that he got all the cancer but it would be good to do radiation to kill any microscopic cells that may be lingering. I have read in many posts that you can only get so much radiation.... should I choose to use that up right now? Please let me know your feelings on this?

Tim_the_MusicMan said:

To radiate or not

I was diagnosed with Squamous Cell Carcinoma in the tongue and the PET Scan showed signs that it was in the lymph nodes in my neck also. This was in March 2013, I had surgery on April 9th at which time they removed all of my teeth, a small portion of my tongue, one saliva gland, and a neck dissection. The surgeon was amazed that the tumor was much smaller than expected and lo and behold that all of the nodes came back negative for cancer. I have been contemplating radiation with my wife  and it seems that there are not clear answers whether I should get this done now or see how everything goes for a couple of months. The surgeon says that he got all the cancer but it would be good to do radiation to kill any microscopic cells that may be lingering. I have read in many posts that you can only get so much radiation.... should I choose to use that up right now? Please let me know your feelings on this?

If it were me, I'd be tempted to go to a big cancer center, where they see HNC everyday, in many different stages and areas of the head and neck....and see what their recommendation is.  That is if you're not already at a big center.

Once I knew I had cancer I didn't want to do any wait and see's, I wanted to know it was gone and never coming back....but that's me.

p

My docs said to go after my cancer, primary unknown, with about everything.  I debated for some time and finally decided to take radiation, surgery and some chemo.  Side effects are tough, no doubt about that.  Maybe some forever side effects may make me wish I would have considered a different path.  Will I be "cured", I don't know, guess no one does.  If I had it to do all over again would go for radiation and everything they recommened, is it the right choice?  Will never know for sure, it was for me, I want the cancer gone, price to pay in terms of side effects almost no object.  No 100% sure thing and if it comes back I am still OK with my decision.  Odds seem good to excelent for neck cancer unknown primary, so went with  that.  Everyone is different and all have to make thier own choices. 

HobbsDoggy said:

Hit It Hard???

My docs said to go after my cancer, primary unknown, with about everything.  I debated for some time and finally decided to take radiation, surgery and some chemo.  Side effects are tough, no doubt about that.  Maybe some forever side effects may make me wish I would have considered a different path.  Will I be "cured", I don't know, guess no one does.  If I had it to do all over again would go for radiation and everything they recommened, is it the right choice?  Will never know for sure, it was for me, I want the cancer gone, price to pay in terms of side effects almost no object.  No 100% sure thing and if it comes back I am still OK with my decision.  Odds seem good to excelent for neck cancer unknown primary, so went with  that.  Everyone is different and all have to make thier own choices. 

I think we all go through that. We want to make sure we're making the right decision. 

I strongly encourage you to get a second opinion. If you have a major cancer center within 100 miles, ask if they have a cancer or tumor board where multiple doctors weigh in. In fact, get a third opinion. Try to develop a sense of confidence--and inner peace--about the decision you make.

To be honest, though, the thought that kept popping into my head as I read this thread (which was mostly posted before I started coming to this site) was: there's no way to know until it's potentially too late to save your life. Reading someone say, "I had radiation and I regret it" makes me really sad because I understand how frustrating side effects can be and the longing to have a choice that wouldn't lead to life-long consequences. I had to stop reading the dental issues thread this morning because I couldn't bear to think about what might happen to me, especially since I've been skipping the flouride trays a couple days a week lately.

On the other hand, the person saying, "I had radiation and I regret it" is still here to regret it. There's no way to know what would have happened if he/she didn't choose to have radiation. The only way to know is to not have radiation and risk discovering you should have had it when it's either too late to save your life, or the cancer is so advanced that the long-term side effects are worse because the cancer had spread to the jaw, or your voice box, or the palate.

So here's the truth, from my perspective, heading toward the year anniversary of completing treatments (June 1):

I think about the radiation (and chemo) side effects 4 times a day on a good day, 10 times a day on a bad day.

I think about how incredibly lucky and blessed and grateful I am not to have worse side effects at least 5 times a day.

I think about the joy of being alive, of walking in the sun, of going to my job (which I love), of going to a movie with my boyfriend, of sitting with a cat on my lap, of having another day on earth at least 20 times a day.

So when I think about the decision I made to have radiation and chemo, I have zero regrets. These days in the sun are worth every second of the treatments, and the hours of simple pleasures in every day far, far outweigh the minutes I spend dealing with side effects.