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Radiation or not

Kim_M's picture
Kim_M
Posts: 3
Joined: Jan 2013

 I had squamous cell cancer and had my voice box removed, I have a laryngectomy, that will be permanent. It is certainly not easy getting use to having a hole in my neck. But I figure I will learn the ins and outs and learn to live with it.

The Doctor (Surgeon) says he is sure he got all the cancer cells with the surgery but recommends Radiation, which would be 7 weeks every day (as most of you are aware), This needs to be started right away, in fact I am running behind on getting it going since my surgery was over a month ago.

My question that I hope some of you can answer is... why bother?

I am actually completely alone... I really do not have anyone to fight this for except a couple of pets and online friends that I have never met or do I think I ever will meet. The Dr thinks he got it all, isn't that good enough? 

I just don't know why I should go through the 7 weeks of Radiation and being sick.

What should I expect if I do the Radiation? How sick will I get? Is there anyone that would be able to assist me in recovery?

 

Thank you in advance for your reply and considerations.

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

Glad you found this site, there are allot of caring helpful people here. I had family with me during radiation but my insurance policy also provided for in-home nursing visits that were very helpful. Won't lie, H&N radiation in itself is easy but the side effects can be very difficult. You will get some side effects but likely not all of them and those you might get come in varying degrees. Your treatment center probably has a counseling center for cancer patients, I encourage you to talk to someone there. Maybe a local church or volunteer group can give you the encouragement. Just because you don't see a reason today doesn't mean it isn't there. I believe most on this site will go with encouraging radiation but you will receive support regardless of your decision.

Candi in STL

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

is to get every one of those nasty cancer cells that may be still hanging around.  I can't give you reasons for wanting to live many more years....well, I could give you my reasons, but that wouldn't be the same Smile.

My mom had a laryngectomy....and had 30 rads after (starting a month after surgery).  Since she didn't have chemo with her radiation, the thing she suffered from most was fatigue....I don't remember her ever mentioning a sore throat.  Much of her taste was affected simply by not being able to use her nose to smell food due to the surgery. 

I wouldn't skip it, since you've already had the surgery....why not carry the ball to the goal post?  You don't know what the future holds....this site proves that "online friends" are still very good friends.....if you meet them in person or not.

p

zaac23
Posts: 24
Joined: Dec 2010

most good surgeons get all the cancer, the outstanding ones tell you cancer cells are microscopic and although it looks like they got it all they say rads are a good idea.Is there a tumor board where you were treated, a radiation oncologist you can talk to to help make a decision, take all your options before tossing the towel. life happens one day at a time, today bad, tomorrow wonderful don,t throw away tommorow

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

 

Kim,

I agree with what Candi and Phrannie have said.  The rads will kill any lingering cancer cells they hit.  You want to be sure to get rid of it.

Regardless, your doctor will keep you on a tight leash and be watching for any reoccurrence (catch it early).

As said, the actual rads are easy; it is the (possible) side effects that will pinch you.

I was given all the options and chose surgery, rads and Erbitux, it was a bit _ _, but so far I am clear and getting better on all fronts.

I had my wife to care for me so can only speculate on a plan without her.  It is fathomable, it just will take more planning.

Best of luck,

Matt

 

MarineE5
Posts: 748
Joined: Dec 2005

Kim,

I can only echo the words of the others above. Allot depends on what is involved for you as you state that you are alone. Fatigue will become an issue in the later weeks of treatment, not at the begining as the Rad's are accumlative.

I was able to drive myself to and from my treatments that were 30 miles away. It could take as long as 1 hour in travel time depending the traffic situation. I planned my treatments for 10:30 AM so I would be later then the morning rush hour traffic and done before the evening traffic. The final weeks, I did drive, but would take a nap in the afternoon.

I had the PEG tube, so getting nutrition in was a matter of me using the gravity method and filling up.

My Best to You and Everyone Here

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Kim,

I echo what the others have said. The radiation will kill any remaining cancer cells. While you will have side effcts from the radiation, they are managable and should not be as severe as getting both radiation and chemo. 

Concerning the other statement in your post. Are there not any family members, friends or co-workers you can enlist to help when they can?Contact your doctor and/or hospital and ask to speak with a cancer counselor or social worker. It's vital you do to help you through this. A positive attitute is vital to your success. 

Positive thoughts and prayers

"T"

 

Kim_M's picture
Kim_M
Posts: 3
Joined: Jan 2013

Thank you everyone for your input. 

No I am on my own with this. no family that I can count on.  This is why I was so concerned. 

Not looking forward to having a feeding tube placed again if it comes to that and as I recall the Dr saying it almost always comes to that.

I will have a lot of questions my first visit, but I just cannot be sold as of yet.  I just had pizza for the first time in over 6 months last night, It was difficult to swallow but was heaven. I had been on pretty much liquid only because of the tumor making it so difficult to swallow. To think I will be giving that up yet again. *sigh* I will keep in touch and let you know what I decide and how it goes.

Again, Thank you

TracyLynn72's picture
TracyLynn72
Posts: 680
Joined: May 2013

 

 

I had two back to back pretty major surgeries to remove a stage II tumor which resulted in them taking 1/4 of my jaw (1 hinge, too).  The first surgery did not produce clear results, but after the second one I had a clean path report.  Then they suggested rads.  I was shocked!  I did not react well to radiation but I did it.  I had amazing encouragement from this site! The reason they wanted me to go through the treatment was to make absolute sure they got every cell.  They didn't want to leave any room for "error" so to speak. I had a tough time, but my doctor said I had almost an "allergic reaction" to radiation.  Who knows?  I did have to get a PEG and it truly wasn't a big deal.  It saved me and was more of an annoyance than painful.  Like you, I had just started being able to enjoy food again and it was so delicious!  I'm a little over 2 months out of rads and my taste buds are coming back pretty well.  I'm enjoying my meals again :) I honestly did not want to do the rads.  I didn't think I'd make it through, but like someone on this very site told me...  "Don't stop fighting.  Make sure you finish the rads so you KNOW you did everything in your power to overcome this illness."  So, I did. 

Ladylacy
Posts: 471
Joined: Apr 2012

When my husband started his journey in 2010 for laryngeal cancer, it was radiation and chemo first.  We were told that was the preferred method.  His tumor was large but had no spread anywhere.  Well they told us he was NED after his treatment.  Not true.  He had a complete laryngectomy, partial neck dissection and throat reconstruction (due to radiation) in March 2011.  I won't kid you head and neck radiation is the worse there is.  But it supposedly does kill cancer cells, doesn't mean they won't spread or return though.  He was NED for 1 year when he decided to have a TEP.  To our surprise and shock, a tumor was found at the cervical of his esopahgus.  Once again radiation and chemo, no surgery.  This time the radiation wasn't as bad on him as the first time.  His throat did close off but the specialist was able to open it without any problems this time.  The second round of radiation did shrink his esophagus. 

Since you had your surgery first, you might not experience what he experienced with his first round of 35 radiation treatments and that was the closure of his throat which required reconstruction during his largynectomy.  The only problems he had with the second round of 35 radiation treatments was the skin burned this time due to the skin graft on his neck.  Sore throat definitely but there is Magic mouthwash which helps and pain pills. 

Another site that might help you because it deals mainly with laryngectomees is www.webwhispers.com.  They are great when you have questions regarding laryngectomy.  This site is great too but there are not too many here who have had a laryngectomy.  All head and neck cancers seem to have the same side effects when it comes to the radiation.

Radiation will tire you out.  Many do radiation and chemo at the same time and that makes your sick.  Many people are able to drive themselves to and from their radiation treatments without any problems, while others towards the end need help especially when chemo is involved.  I know of those that continued to work during radiation and chemo and live alone.   We were told to notify 911 that my husband was a laryngectomee so that if a call came from our phone and no one could talk that was the reason.  I also found stickers that I have on our cars and house storm doors saying that there is a neck breather in the car or the house.   Webwhispers told me about these stickers and where to get them.

Just remember everyone is different in how they react to treatment.  Wishing you the best -- Sharon

 

 

debbiejeanne's picture
debbiejeanne
Posts: 2371
Joined: Jan 2010

kim, i am so very sorry that you feel all alone.  cancer is hard to deal with and especially if u think u r alone.  u sound like u have family but maybe aren't real close.  maybe u could tell them of ur illness and maybe they will surprise u and want to b ther for you.  i would certainly want to be there for my family member.

i too am a laryngectomee.  i had larynx cancer in 8/09 and went thru 35 rad tx.  in 2/12 the cancer came back and i had the surgery (laryngectomy).  i had family but i still felt ALL ALONE and very depressed.  this was a HUGE change in my life and i didn't know how to deal with it.  i stayed to myself and pretty much gave up on life.  it took me 1.5 years to realize that i still had a life to live!!!!!  my younger sister got seriously sick and it made me realize that my life is different but at least i'm ALIVE and CANCER FREE!!!  i wasted so much time be'n depressed over be'n different when i was actually the same person only w/o the cancer.  today i'm sorry for the time i lost be'n depressed and i live everyday!  i encourage u to think about the tx b/c your life will gt better!  the tx is rough but it is DEFINITELY  DOABLE!!  we will be here to encourage u and help u w/any questions u may have.  u can send me a pm if u want.  i will be praying for you!!  please let us know what u decide.

God bless you.

dj

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

I guess it really boils down to your decision . I was told it was up to me . My family didn't want me to go thru it , I guess because the path report from my Lymph Node surgery showed no Cancer ( my Biopsy did ) My ENT , Rad Onc and my Family doctor all said if it were them they would have the Radiation treatments. However My ENT did say we "could" just watch it and wait , but I decided I didn't want to have to watch it and worry about it . Like someone said they will watch you closely but I was afraid it wouldn't be found soon enough . I only had to drive about a mile but I drove myself everyday for 33 treatments, I did get a little weak towards the end and my Husband did most of the cooking ( but that was mostly for him anyway ) but you could cook frozen dinners in the Microwave.  You will probably wind up mostly on Ensure , Boost ,soups etc.  so you won't need to cook much during the last part of treatments. You may or may not need a tube , I didn't because I was very overweight and my doctors didn't like me losing so much but no one ever mentioned me getting one . Like they say on this forum everyone is different .Good luck to you on whichever way you and your doctors decide to go .Please hang around this Forum with us and let us know what you decide and how you are doing .

Peggy

Grandmax4's picture
Grandmax4
Posts: 583
Joined: Dec 2011

the people on this board are some of the kindest,caring knowledgable people I've ever met, and yet, I only know them on-line.

In November 2011, I had surgery to remove my epiglottis, my surgeon used the di vinci robot to do a radical neck dissection. I knew there was the possibility of chemo and/or radiation. The lymph nodes all came back negative and I was spared these treatments..IF, my surgeon( who I love and will trust til the end ) had said I needed the treatments, I would not have though twice, they would be done.

I don't know your circumstances, but, it's time to start reaching out..we have almost become family on this board...it really is an amazing feeling to know you can come here and always find support.

We welcome you to the club that no one wants to belong to~~best of luck with your decision

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

Radiation or not....

As mentioned, it's your choice and decision...

As my ENT whom I totally trust and saved my life put it to me this way...., and this was after I already had my tonsils out (STGIII) and had TPF.

You could stop here, but I highly recommend you continue treatment. For me that meant an additional seven weeks of daily rads, and weekly chemo..., along with the amifostine injections in my belly each day just before rads.

He said he has had some that didn't continue and so far so good..., a few that didn't and it didn't work out in their favor.

To me I went with the most aggressive and pro-active regime' offered...

Kill it straight out, full steam ahead...

Radiation is the one treatment that keeps on giving, you'll have various side effects going out to two years or longer.., most deminish within the first year or so. It's brutal, but you can get through it...

But, at least the chances of being here for many years is greater..., that's the plus.

I guess it always comes down to how lucky are you, or do you feel...?

Best,

John

 

NelsonOng's picture
NelsonOng
Posts: 43
Joined: Aug 2013

As for me I do.  I have a biopsy (Aug 2012) and was benign.  MRI and CT scan reports, no word of C.  Decided to postpone my surgery cos of my holiday trip and marathon in Dec 2012.After I am done with, fixed my surgery on 24 Jan 2013 and was told to do another CT scan and MRI.  Still no word of C.  Surgery done and surgeon says he did a very clean job.  But post Histopathology report says SCC Stage 4 and lymph nodes not affected.  ENT recommended RT and chemo.  I also go ahead (becos I love myself) knowing what I will be facing with the side effects of RT and chemo.  Kim, if you love yourself, my advise is GO AHEAD and don't wait.  Yes, radiation on the head and neck area is brutal and there are side effects but after post treatment it will slowly gets better and better.  God Bless You.

jim and i's picture
jim and i
Posts: 1599
Joined: May 2011

Well everyone has pretty much covered it. However, my questionis this:If you have no reason to live then why did you have the surgery? If you start something, finish it. There are many resources out there. Talk to the counselor at the cancer center. Don't let the word counselor turn you away. They are not going to analyze you or talk you into doing something. They are basically resource people who provide you with answers to questions and where to get help. I think you are just scared and you have every right to be. When it seems there is no one who cares, remember God cares. And we at this board care. We are here to support you and encourage you and that goes a long, long way.

Debbie

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