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are there alternatives to radiation?

Buschmann's picture
Buschmann
Posts: 8
Joined: Mar 2005

I recently had squamous cell cancer in lymph nodes. I have a strong sense, based on extensive testing and the results of my surgery, that radiation therapy may not be necessary. As far as my doctor is concerned, radiation is the obvious choice, but given the consequences I'm not sure I'm ready to accept that. I'm looking for people who have opted not to have radiation for similar cancers to find out what they did instead and what sort of success rate there is for alternative therapies.

Sdawe
Posts: 14
Joined: Mar 2005

Hi Buschmann: My husband was just released from the hospital last Sunday after tumor removal and reconstruction for base of tongue cancer. We are having the same discussions as his margins are clear. We have an appt next Thursday to discuss radiation as all of his pathology has come back looking good. I will fill you in after the appt....good luck and please let us know what you find.

Buschmann's picture
Buschmann
Posts: 8
Joined: Mar 2005

Hi, Sdawe,
They don't know where my cancer started, but base of tongue has been mentioned a lot. I ended up going the conventional radiation route after getting frustrated in finding any kind of clinical substatiation for anything else. I read up a little on essiac and decided it was far to nebulous for me to invest any confidence in it. What sounds like a reasonably clinical-sounding name turns out to be the name of the originator spelled backwards.

I just had a talk with my rad-onc about ethyol/amifostine, too. I was a little piqued that he hadn't mentioned it, after finding so many references to it at this site. As it turns out, He did research on it himself and found that it had no substantial benefit in preserving salivary functioning. In fact, the nauseating side-effect was enough to give him cause to abandon using it. I've been taking salagen toward the same end, and have found it nauseating as well.

My doc feels that because I am young (46; God, I love that someone still thinks of that as young!), I stand as good a chance of retaining salivary function without amifostine or salagen (he only gave salagen to me because I asked him for it) as I do with it.

I hope all goes well for you and your husband. It sounds like he and I are graced with great spouses. Please do let me know how things go for you.

--Jim

nckaren
Posts: 18
Joined: Jan 2004

After my parotid cancer surgery, my surgeon was convinced that I would be cancer free, but that I should see a radiologist for his opinion. He said that because my margin was so small that he thought I should have radiation. With the treatment, my odds were 98%, whereas without they would be 50/50. I naively went with his opinion and am sorry to this day. In the past year I have gone through two more surgeries to my ear and mastoid to try and help what the radiation did to my ear. They have not been successful and I now am left partially deaf in that ear for the rest of my life. They also did damage to my spine which causes a "shock like" feeling in my legs whenever I look down. They keep saying it will go away in time, but after a year I am pessimistic. Get a second opinion and do your homework. Best of luck, Karen.

Buschmann's picture
Buschmann
Posts: 8
Joined: Mar 2005

Thanks for the advice, Karen, and I'm sorry about your experiences. Here's a site I found that may be of some use: http://nccam.nih.gov/

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Jim,
I read your post with great interest. I am a regular member of the colorectal board (NO pun intended) and very recently had a good friend diagnosed with metastatic squamous cell carcinoma of a lymph node in his neck. His workup revealed a primary lesion at the base of his tongue. He is scheduled to start radiation with concurrent chemo in 10 days or so. He is being fitted with his mask for rads, and next week will have a gastric tube planted, as his docs have told him he will not be able to eat after a few of his daily radiation treatments.
What type of surgery have you had? My friend's treatment plan is to attempt to avoid surgery, but will know more after 6 weeks of rads. Have you already had a course of raditation prior to surgery?
Any info you have would be greatly appreciated; feel free to e-mail me at this site.
Thank you and good luck with your decision. Judy

Buschmann's picture
Buschmann
Posts: 8
Joined: Mar 2005

hi, judy,

Sounds like we have a few things in common; I had a colectomy 8 years ago. For that one, I had radiation and chemo prior to the surgery, and the two succeeded in shrinking the tumor and facilitating its removal. For my current squamous cell cancer, I had surger to remove 40+ lymphnodes and my tonsils. They didn't find any cancer beyond where they had already identified it, in one or two lymphnodes under my jaw. I didn't find any alternative therapies in which I felt I could invest much confidence and ended up proceding with the prescribed course of radiation. I've now had 7 of 25 scheduled doses, and I can feel the effects. I'm also having stomach problems, which are probably due to stress.

I found a site that discusses complementary and alternative therapies; the address is in one of the replies in that discussion thread in the head and neck groups. I hope it is of some use to you. Good luck to you and yours.

--Jim

Concerned Famil...
Posts: 2
Joined: May 2013

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

Concerned Famil...
Posts: 2
Joined: May 2013

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

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

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

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

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

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

Buschmann,

I opted for surgery, rads and Erbitux.

You can always have rads down the road if the cancer comes back.

Matt

hwt's picture
hwt
Posts: 1821
Joined: Jun 2012

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.

Tim_the_MusicMan's picture
Tim_the_MusicMan
Posts: 3
Joined: May 2013

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?

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hi Tim,

I was Dx'd   Tx N2b MO Stage IV HPV+   I had an unknown primary and the cancer was growing in several lymph nodes on the left side of my neck. 
My team decided for surgery (selective neck dissection) along with additional biopsies to help find the primary. All biopsies came back negative.

The point was this. If they went in and the tumors were still encapsulated then it would be radiation only. If they had broken out of their capsules then it would be chemo/rads. Either way rads would be necessary to make sure they eradicate any microscopic cancer cells that the surgery missed. 

If you're not already, I would get a 2nd opinion at a comprehensive cancer center.

Positive thoughts and prayers

"T"

 

Tim_the_MusicMan's picture
Tim_the_MusicMan
Posts: 3
Joined: May 2013

Thanks for the advice Fishmanpa and Phrannie. I am currently being seen by The Medical College of Georgia (GRU), and yes, this is a pretty big cancer center. As I had noted before, the surgeon told me he would suggest that I do the RADS thing (due to my age), if I was 80 yrs. old he said he would probably pat me on the back and tell me to have a good life. I admire this doc for the amazing work he did on the surgery and has been very honest in my opinion.  Both of my parents had cancer, my mother had breast cancer (radical mastectomy) in one breast and had cancer cells in two lymph nodes. She opted out for Radiation and Chemo.... that was 25 yrs. ago and she is now 85 and in a nursing home. Cancer has not returned. My Dad had stomach cancer from ulcers, and he also after surgery opted out for Radiation and Chemo.... He died 13 yrs later from heart failure related to a fractured pelvis. So, I think everyone can see where I am coming from. I am now going to try and get a 2nd opinion about this. My wife is worried that it may come back right away with a vengeance. I also am trying the baking soda/ maple syrup regimen along with supplements to improve immune system.... I know it sounds crazy but, I did it for 5 days prior to surgery and maybe??? that had something to do with the tumor being smaller than originally thought??? Anyway, thanks again and I will keep all of you in my prayers and will keep updating what is going on.

Tim_the_MusicMan's picture
Tim_the_MusicMan
Posts: 3
Joined: May 2013

Thanks for the reply fishmanpa and phrannie. I am currently being seen at Medical College of Georgia (GRU), which is a pretty big cancer center. I am in the process of trying to obtain pathology report in order to get 2nd opinion from another cancer center. Thanks again and I'll keep you updated.

phrannie51's picture
phrannie51
Posts: 3598
Joined: Mar 2012

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

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Actually there are a few on here that have had rads more than once....

It's tough decision no matter how you cut it...

I wasn't given a choice, more than likely I would have opted as I did... Hit me as hard as you can and hopefully kill evrything once and for all... Of course there are no guarantees whichever way you decide...

JG

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Radiation more then once, yes it's hell on earth but you got to do what you got to do, I like wakening up and seeing the sunshine

 

Still living

Hondo

HobbsDoggy
Posts: 165
Joined: Feb 2013

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. 

Laralyn's picture
Laralyn
Posts: 430
Joined: Apr 2012

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.

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

That was so well said !! I so agree with you !! Some of my family and my caregiver didn't think that I needed raditation and didn't want me to have to go thru the side effects because after my surgery the path report showed no Cancer , but I wanted to be more sure "it" was gone . So guess what I had a recurrance within 6 mos. after treatments on Lymph glands a couple of inches further down on my neck and this time the Path report showed 1 lymph node/gland with the same SCC ! I am so glad that I went ahead and had the Radiation treatments . I am now going to MDA to see what I am to do next.

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

The internet is full of alternate treatments, therapies and what not.

Surgery, Chemotherapy, nothing, prayer, natural remedies, vitamins, voodoo, water, naturopathic, Chinese, acupuncture, mind-body, proton therapy, pet-therapy, hypnosis, exercise, aroma-therapy, Biological and Pharmcologic Therapies, Antineoplastons, Gaston Naessens Therapy (714X), Revici Therapy,  Hydrazine Sulfate, Immune Therapies, Immuno-Augmentative Therapy (IAT), Issels whole-body immune therapy, Herbal Therapies, Harry Hoxsey formulas, Essiac tea, Mistletoe (Iscador)...as used by Suzanne Somers, Pau D'Arco, Chaparral, Nutritional Therapies, Wheatgrass Therapy, Macrobiotics, Moerman's Anti-Cancer diet, Metabolic Therapies, Gerson, Oxygen Therapies (including Ozone), Hyperthermia, DMSO therapy, Chelation, Live Cell therapy, Energy Medicine, Bioelectric Therapie, apricot seed kernels, papaya leaves and stalks, and lemon grass ……………………..to name a few.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Ill take the prayer and lemon grass please. I agree with the second opinion and a 3rd if needed because everyone being so different it is hard to say what will work or will not work. For some people Radiation and Chemo will work the first time and others it doesn’t. Then there are some people that can take an alternative treatment and it will work for them but not for anyone else. I don’t think there is a reason other then our genetic make-up, the same reason why some people get cancer and others don’t. I had radiation twice and chemo once and it did not work because the cancer came back a 3rd time. I do know that if someone has a strong positive outlook going into treatment it has a tremendous effect on there outcome of treatment. Other people who have a lot of friends praying for them tend to do better then someone who has no one praying for them. The way I look at it, do what you think best, make a choice and stick with it keeping as positive as can be, after all it’s your body.   

Ladylacy
Posts: 457
Joined: Apr 2012

When my husband was diagnosed with laryngeal cancer in 2010, we were told that the way to go was radiation (35 rounds) and 3 chemo.  We had hoped that would work, but it didn't and in 2011 he had a complete laryngectomy, partial neck dissection and his throat had to be reconstructed due to radiation completely closing off the back of his throat.  We were also told that he couldn't have more radiation.

Fast forward to 2012 when they found a tumor at the cervical of his esophagus.  Very small and surgery we were told wasn't a good option due to his prior radiation.  Now my husband said many times that he wouldn't undergo anymore radiation after the first time, well when faced with this new and rare spot for cancer we were told, he elected to undergo another 35 radiation and 7 chemo treatments.  Well the second time around it wasn't as bad but he did have a peg tube inserted once again before treatment.  Now after a follow-up PET/CT scan (second one since treatment ended) the cancer is back and has spread.  My husband elected no more treatment.  The only option was chemo since the cancer had spread to his right lung.  He said quality of time was more important than quantity.

On this journey, and after reading his PET/CT scans, I have had many questions.  The main one each time is if the PET/CT shows clear, then why did the cancer return.  I was told that no PET/CT scan, viewing by the specialist down the throat or in your throat, cannot find cancer cells that are tiny and this is why they suggest after surgery radiation and/or chemo.   So guess what I'm trying to say is that, although radiation is hard and H&N radiation especially, no one can predict the outcome.  And like all treatment, radiation/chemo/surgery each person responds differently to treatment. 

Wishing you the best outcome with your decision.  Sharon

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