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Radiation 101

SarahSmile

New member
Your radiation experience will vary based upon your radiation site; for instance, my esophagus was not radiated, so I did not experience the esophageal/throat soreness so many of us do. Radiation of the groin will carry a different set of challenges than radiation of the chest.

I'll start off the dialogue about radiation with some tips from my experience:

--> Be religious in applying the cream and ointment recommended by your radiation oncologist. Keep it up after treatment's end, because your skin will still go through changes after treatment's end. I was great with my cream and still ended up with a livid, nasty, itchy, erupting rash that they called, "Sun rash." It eventually peeled off after driving me crazy it itched so bad -- and now my skin is bright white where it peeled off and still brown where my tanned skin wasn't affected.

--> Understand that fatigue is a really common side effect of radiation, so be gentle with yourself. It's hard to imagine that something that happens in such little time can pack such a wallop on your energy level, but it does.

--> Depending on the site of your radiation, you might get a mask. I did, and they marked the mask itself daily after a quick X-ray prior to each treatment, so I did not get the tattoos that some folks do. (They're really tiny.) They laid this piece of hot plastic over my face, head and upper chest, and then did some CT scans and X-rays to line up the radiation field while the plastic sheet dried into a mold. To it they applied little sort of toggle bolts, and each treatment I would lie down on my back and they would lower the mask over my face and upper chest -- it keeps you in firmly in place so they're radiating the right part. It can be stressful lying in the thing, but unless there's a delay it should be done in just a few minutes. (My actual radiation time was 20 seconds from above and 20 seconds from below.) Just do some positive visualization or run through your day's errands or plan a trip or something if the mask stresses you. (I imagined my mass crunching and crumbling away beneath the radiation's beam.)

--> Please know that you will have to wait for a while after receiving radiation before you can have a PET scan, as the PET can easily show a false positive because the radiation is still doing its work I think like 60 days after treatment's ended.

I've got to run.....I'll be back to post more later...

I encourage all of you who've been radiated to share the benefit of your experiences with those facing rads in the future. That's what this board is all about!
 

ag2006

New member
Thanks Sarah for the valuable info!

Look forward to more entries! Please give us radiation newbies the knowledge, advice & suggestions of your personal experiences. Thank you.

God Bless,

Anne (awaiting radiation soon)
 

RayNat

New member
Cool Sarah, radiation is in the pipeline for me once my lungs are all clear so keep adding valuable advice.


Btw, if looks like on the east coast (MSK) they like to radiate before SCT while the west and south do it after SCT (e.g MD Anderson) I wonder what rationale is behind each approach.
 

SarahSmile

New member
Hi Natalia, at Emory they follow the protocols of Sloan Kettering, and in response to my very same question, my onc told me that Sloan Kettering's current rationale is that doing the rads beforehand (after collection but before high dose) is most beneficial because they want to reduce the field maximally going into the high dose so that it has the smallest area to work on. The idea is that since the high dose is the star of the show, they want to set it up for the greatest impact over the smallest area instead of doing further clean-up afterwards.

That makes total sense to me, but obviously there's more than one road to Rome.
 

ChrisRyan7

New member
I figured I'd add some more stuff from my experience:

If you're getting your neck/throat radiated, get a dental exam before rads start and ask for flouride rinse too. I was told to use only a soft bristle tooth brush and to brush gently. Rads can do a number on any teeth in the path, so get a follow-up dental appointment too.

I got sharpie marks instead of tattoos, and they re-marked them every day. Avoid white clothes and sheets for a while. I found that removing the majority of the marker and leaving just a little behind (use soft liquid soap to avoid irritating the skin) kept the sheets clean.

Ditto what Sarah said about the application of the cream. Start before you think you need it and keep it up.

I had a tremendous bout of exhaustion AFTER rads finished, about 2 months later and it lasted for about 6 weeks.

If you get your neck/throat radiated, you may lose thyroid function. Here's a link for symptoms of hypothroidism.

My treatements were like this: Arrive and check in, wait to be called, change into gown on upper half (I had my neck radiated), climb onto table, get re-marked with sharpies and position table (I had my head and chin taped into place), zap for about 15 -30 seconds from each side, dress and go home. Weekly visits with the radiation onc and weekly blood checks. I also had periodic x-rays after treatment to make sure they were hitting the right spot.

The side effects I had during treatment were loss of taste, loss of saliva on the treated side, and the sore throat. I also lost hair in the treated area, and had back problems because of the hard flat table and the position my neck was held in, and a few rounds of claustrophobia. Oh, and ear, jaw pain on that side as well.

Longer term I've had pain in the treated area and a "hump" that is scar tissue from the rads.
 

RASC_NY2

New member
Most of the good stuff has been said. Several points missed: if you are having radiation to the neck and throat, cough drops will relieve some of the throat pain. When eating take small bites and chew a lot, and then swallow-do not be in a hurry. After 3 or 4 times you will not continue to feel the initial discomfort and be able to finish your meal. The mask is very confining, make sure you are comfortable and the mask fits properly or you might experience a chocking sensation. The mask is skin tight so it must be on 100% right-have them reset it until you are comfortable. Lastly have the RAD ONC explain his radiation plan, it is fascinating: how the beams work, how critical areas are masked (as much as possible); what the clicking noise is.

If you are a male you might be discriminated against they will not give you a robe.

Use the cream etc, etc. It is really a lot of trouble for 15 min a day, in my case for 15 days. With the exception of the sore/sensitive skin in area of the radiation I think I have escaped other issues for the time being. Your hair lost to radiation will take longer to regrow then chemo lost hair-mine took almost 4 months to start. In most cases there will be radiation to the front and back of a suspect area.

Like Chris I removed the marks above the shirt collar. An alcohol wipe works wonders. I thought it was a lot easier then chemo. Be advised you might be video filmed during the treatment I was!
Tony
 

hem rn

New member
Sarah,
You mentioned that radiation of the groin carried its on set of challenges. What are those challenges? They mentioned only doing radiation on one side. How well can they block those major organs there? I'm not so worried about my ovary my baby days are over. Its the bowel and bladder that I worry about. I have only 3 chemos left
and I'm starting to try to figure out what to expect with the radiation
. Do they make you wait any amt of time between chemo and radiation or do they normally let you jump right and get started. As much as I would like a break, I finish chemo around the last week of November and I'm now at the point where insurance is paying 100% until the end of the year. In January I start my new year over. So for financial reasons it would be great to get as many in by December 31 as possible.
Thanks for any info.
Holly
 

Dee74

New member
Hi,
I'm fairly new here, but I just started my Radiation therapy on Wed. I am having my neck & chest radiated. I was given the mask to keep me in place. My treatments are very quick. I think it lasts longer for them to position you in the correct place than to give you the radiation.

It takes me about 15-30 seconds. They do front and back. I was also told that my hair would fall off in the back of my head only. Shucks, just when it was groing out. But oh well.

On my first radiation treatment, I had a sore throat half an hour after the treatment. It wasn't that bad, just a little sore, as if you are starting off a cold. But I am feeling very fatigued. This is barely my first week, I just pray & hope it doesn't get a lot worse.

I did get a tatoo, in the middle of my chest, and the rest I get sharpie marks as well. And I am using the creams they told me about. No problems with my skin....yet....

Hope this helps.......
 

ag2006

New member
Here are some links regarding radiation:

Radiation Therapy: What to Expect:
http://www.uihealthcare.com/topics/medicaldepartments/cancercenter/radiationtherapy/index.html

Radiation Therapy and You - National Cancer Institute
http://www.cancer.gov/cancertopics/radiation-therapy-and-you/page1

What to Expect During Radiation Treatment
http://www.ufscc.ufl.edu/patient/content.aspx?section=ufscc&id=23110

Radiation Therapy for Cancer: Q & A - National Cancer Institute
http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation

ACS :: Radiation Therapy Effects
http://www.cancer.org/docroot/MBC/MBC_2x_RadiationEffects.asp?sitearea=MBC

Radiation Therapy - Cancer information on MedicineNet.com
http://www.medicinenet.com/radiation_therapy/article.htm
 

everydayrose

New member
There's a lot of info here, but little on rads to the chest and sides. My rads started yesterday, and I was wondering if there were any side effects, long or short term to the lung/heart area. My tumors are located on the left lung very close to the sternum and major arteries. Any knowledge on this matter would be greatly appreciated
 

ag2006

New member
Hi everydayrose. I have the same concerns about radiation affecting my chest, lungs and heart. I am told most patients do well and with modern radiation, the side effects should not be as severe. My doctor ensured me he will only "radiate" the areas that need to be radiated and will try to avoid the heart and lungs especially. I suggest you ask your doctor about these side effects and your concern about radiation to ensure you are both on the same wavelength. Below is some information I found on the internet. It's basically pretty much what my doctor said. I also included source links. I hope this helps.

Everybody will react to radiation differently. According to Cancerhelp.org, "One of the ways doctors try to prevent long term side effects is by making sure that no more than the safe amount of treatment is given to any part of the body. Each part of the body has a radiotherapy limit and this varies depending on how sensitive that part of the body is to radiation. Doctors know from experience what that limit is."

The possible side effects are:

1. Radiation treatment to the chest may cause problems when swallowing, development of a cough, or shortness of breath. When radiation treatments include the chest area, the lungs can be affected. One early change is a decrease in the levels of surfactant, the substance that helps keep the air passages open. This keeps the lungs from fully expanding, which may cause shortness of breath or cough. These symptoms are sometimes treated with steroids. A possible late effect of radiation to the lungs is fibrosis (stiffening or scarring). When this happens, the lungs can no longer inflate and take in air. If a large area of the lungs is treated with radiation, these changes can cause shortness of breath and less tolerance for physical activity. ACS Side Effects of Radiation to Chest

2. Radiation to the chest area will also cause some swelling in the esophagus -- the tube through which food passes when we swallow. The radiation irritates this area, and a patient may experience it as heartburn or a lump in the throat or chest. This can be controlled by avoiding extremes in temperature of food and liquids and ingesting only lukewarm beverages and food. Side Effects of Radiation

MORE POSSIBLE SIDE EFFECTS TO CHEST AND LUNGS (SOURCE)

1. Possible problems may include skin irritation, difficulty or pain when swallowing, and fatigue.

2. Lung radiation may cause shortness of breath. This may be temporary or permanent depending on your cancer and its treatment.

OTHER CONCERNS(SOURCE)

1. With radiation therapy to the chest, you should not lose the hair on your head or have an upset stomach.

2. Chest radiation will <u>not</u> affect your ability to have children.

Talk to your doctor about any discomfort you feel. He or she can provide treatments to help. Everyone responds differently to the stress of cancer and treatment. Doctors, nurses, social workers and support groups are available to help.

OTHER POSSIBLE LONG TERM SIDE EFFECTS

Some scarring of the lung during radiation treatment to the breast and chest may result in persistent respiratory symptoms. The breast tissue may also scar and result in changes in the way the breast feels when touched. Recent reports have suggested that radiation treatment delivered to the chest for Hodgkin's lymphoma may cause an increase in the incidence of breast cancer, particularly among younger women. Radiation delivered to this part of the body may, depending on the dosage, result in damage to the heart and its blood vessels. Side Effects of Radiation

Other Radiation Sources to chest area, etc.

Cancer Treatment Side Effects - chest/breast

Side Effects of Radiation

Radiochemotherapy for Hodgkin's Disease - Side Effects

Yahoo Health Side Effects to the Chest

Once I have more information from my doctor, I will post it here. If anybody wants to chime in and add to Radiation 101, please do. Your personal experiences will help new and current patients.

Best wishes,

Anne
 

CSMR2

New member
One thing to note is that side effects such as damage to heart and lungs increase with dosage quite markedly I think. Also I read one study (Lung cancer after treatment of Hodgkin's disease, Gilbert et al, 2003) that found the risk of secondary lung cancer increases roughly linearly with dose in the range of doses used. (Not true of other cancers I don't think.) I am not sure what doses are effective in your stage everydayrose. If you are getting conformal RT or IMRT that will be likely to help things it is thought. You could mention your concerns to your radiotherapist if he is the sort to discuss things.
 

Liz82

New member
Hi Everyone,

I just thought I'd add in some of my experiences with radiation. I know you may not want to hear this, but I found radiation especially hard to deal with. I had finished chemo and was ready to move on and had over a month off to get adjusted to some sense of normalcy. When radiation started, my radiation oncologist was incredibly insensitive and ended up calling me oversensitive and emotional because I cried in his office. So...not such a great way to start out the treatment.

Anyway, I was radiated to my neck, chest, and esophagus and unfortunately the side effects were really quite painful. I was fine the whole way through until the very last day of treatment. At this point, my throat was already quite soar and I thought it would be going away. HOWEVER, my sore throat became so bad that I was unable to eat for almost a week. I also couldn't even swallow water or my own saliva because the pain was so bad. They said it was like I had third degree burns on my esophagus. I ended up in the hospital for days, getting fluid, morphene and working on getting at least one vanilla pudding down a day. I found that anything that had the least bit of sugar in it, hurt the most. The only thing I was able to get down was fat free sugar free vanilla pudding (of course not the best staple food when you are trying to keep on weight). The pain eventually subsided, but I found that radiation really blindsided me in that I was mentally prepared to move on and have it be a breeze when in reality it was painful and landed me back in a hospital bed.

I hope this doesn't discourage you, but I remember looking at this webpage hoping to find someone with my experience so I wouldn't feel so unusual....If by some chance you experience anything like this, know that it's not that strange and it does eventually go away.
Good Luck.
 

ag2006

New member
Liz, thanks for the valuable information. Personal experiences really help us here. I am sorry you went through a difficult time, especially with an insensitive doctor. I am facing radiation soon for leftover scar tissue and I just want that specific area of the chest radiated but my oncologist wants to radiate my neck, chest and possibly stomach as that's where the cancer was located during my first diagnosis. I think it's too extreme especially since I don't have cancer anywhere right now. They want to do this as a precaution and sort of like an "insurance policy", but frankly I think they are being too paranoid. After he told me that I "may" have to go on hormone replacement therapy if I get the "complete" radiation, it just made it harder for me because I've heard some horrid stories about HRT. Frankly, I feel I am too young for this HRT.

I admit I am very concerned about this right now and am trying to stay focused. The decision will be made late next week after I have all the information, but it's going to be a decision that I also make and one that I feel comfortable with.

Thanks again for your input. Keep the faith and stay strong.

God Bless,

Anne
 

CSMR2

New member
Hi Anne. You are bound to have some risks one way or the other. Most people with earlier stages get radiotherapy to the chest (normally 30Gy); the complications are not that severe and are usually considered worth the risk. In the past they would irradiate much larger areas with over 40Gy and even then it was not all that dangerous for younger people. And with IMRT you should feel even more comfortable. I don't know about the stomach though.
Have your doctors told you what they think about the relapse risk with and without?
All the best
Charles
 

ag2006

New member
Hi Charles. Thanks so much for your advice. I'm not so worried about the first option of getting only my chest radiated because the scar tissue is very small. However, what I am concerned about is my radiation oncologist said he may need to go for option 2 which is to radiate from my neck down to my stomach where the HD was located when I was first diagnosed. Thus far, the only place there is scar tissue is on my chest. I am told IMRT is not a good option for me, because it's too strong for scar tissue and in my case, it would cause secondary cancers. IMRT is for tumors which I don't have. I am getting a CT and PET scans this week then a follow up next Friday, the 17th so I should know more by that time when they re-stage me. I'll follow up. Can't wait until this is all over! Thanks and best wishes.

Anne
 

Dee74

New member
Hi everyone,

I wrote in on this issue about a week and a half ago. I am going through Radiation daily, neck & chest, and when they say neck it's from your jawbone down. I was doing fine, However I am sad to report that I have gotten the famous "Sore Throat", and my hair is falling out only on the bottom of my head, & just a bit fatigued, nothing major.

I don't mean to be a baby, I handle pain very well, but the sore throat is bad, and I'm terrified it's going to get worse, I've lost 4 pound in just 3 day's.

If it's any consolation, I handle warm beverages better than cool ones. I feel the cold makes it hurt more. And it is hard just to swallow you're own saliva. Even the reflex of swallowing is said to be damaged, I'm also having problems with that.

2 weeks in and only 4 more to go...woo hoo.......


But remember everyone's body is different & reacts differently. Not everyone has all these symtoms.

Good luck to everyone!

God Bless!
 

malnutian

New member
I was just reading this post and thinking how strange our bodies are -- we all react differently to the same treatment and have many different methods of coping.

I had less than three weeks of radiation (thankfully) and yet my reaction to it was severe, like Liz's. I couldn't eat by the end of the first week and couldn't drink or swallow for the last week of treatment and several days after it had finished. But I was so against going to the hospital for fluids that I kept popsicles in my mouth for nearly two weeks. I couldn't swallow, but just let the fluids slide down my throat. I couldn't tolerate sugar either and the least sugary tasting popsicles were banana and raspberry -- we still have bags of leftover popsicles in the freezer (from six months ago).

If I could give advice to someone going into radiation, it would be to be prepared. I thought it would be a walk in the park compared to chemo, and was heartbroken and depressed with the damage it did to me. Radiation is not always this bad for everyone, but if it is for you know that you are not alone, know that it is temporary and find any way you can to keep hydrated!!

-Mallory
 
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