Radiation Side Effects

Making Lemonade out of Lemons
Hi there

I normally post on the colorectal board - my name is Craig.

I look over from time to time since Joanne started this particular board. Your post on radiation got my attention - I just made a couple of replies to other posts on the same topic, so it's the topic of the day for me.

The answer to your question is YES. It will always be that way.

I had 25x treatments in the left and right hip and up the back end as well. The collateral damage has been enormous. It's been over 5 years now since I had this done and it is only getting harder to move around as the years pass.

Biggest problem seems to be when I try and bend over to put on socks and shoes or pick something up off the floor. Also, if I get down on the floor on my knees or try and sit on the floor and get up, I have a really tough time doing that - move like a very old man and need furniture to prop myself on to give me a hand.

I was only 43 when this happened - the radiation "aged" my body exponentially. I worry about the long time prognosis and what I can expect as I get older. It's a sobering thought.

Driving a car or sitting in a chair sometimes gets me stiff and I have to sort of unkink but then I can get going ok.

I walk on a treadmill and climb the stairs at work to try and keep as flexible as I can, so I don't get totally unable to do anything.

Reading your comments about bending and sitting really struck a chord with me. Everyone always thinks it's chemo - but it's RADIATION that does this and nothing else. I've talked about this on the colorectal board, but it falls on deaf ears.

It's nice to meet you BTW - I hope this post helps you some and lets you know that you are not the only one who suffers from this affliction.

If you run into something good, please let me know - I'd be willing to try it.

Kindest regards,
-Craig

lemonade said:

I was also looking at the
I was also looking at the CRC board for this topic, since this a new group and most people used to go there for info. I noted in a post to that group that all of my joints do not hurt i.e. my ankles, just the area where they did the radiation. So the chemo theory doesn't make sense to me. The radiation may make the pelvic area susceptible to arthritis or other problems since the area is permanently affected by the radiation. I am thinking about going to an orthopedic doctor about the problem. How did Lance Armstrong get through all of this? I would probably feel better too if I had personal physicians, nutritionists, etc. to give me a heads up on what to expect. I think the doctors should give you information on what to do AFTER treatment is finished. Their response seems to be that "everyone reacts differently" and "we'll see you in 3 months" as opposed to be alert to the following side effects that may occur. Then you can be proactive about heading them off at the pass and start doing something about it. I also had rotator cuff repair in April 2009. (Cancer treatment started 7-09). They immediately started me on physical therapy and I did it religiously. I hope I am not starting the stretching exercises too late, if they help at all.

Hip/pelvic stiffness
Hi Lemonade--

I completed 6 weeks of chemo/rad for anal cancer in Aug./Sept. 08. I am not as flexible in the hips and pelvic region as I used to be due to the radiation. However, I am a runner and lift weights for exercise and it has helped me tremendously. I really believe exercise is vital in keeping things from "seizing up." One thing that radiation can do is damage/weaken the bones. If you have not yet had a bone density test, you should have one to assess the condition of your bones post-radiation. I had my first one about 6 months after my treatment ended and it showed that I have osteopenia, which is the precursor to osteoporosis. I take many supplements now to improve my bone health, including calcium, magnesium and vitamin D. Weight bearing exercise is very important in keeping bones strong, so I still run 6 days/week. If you are unsure of what exercises to do to increase flexibility and range of motion for the hips, have your physician refer you for one visit to a physical therapist for instruction in an exercise program. I have never done yoga or Pilates, but many who have had pelvic radiation will attest to the benefits of both, which you might try. I wish you only the best in dealing with these issues and hope you can find ways to improve your flexibility. Unlike the above poster, I don't necessarily believe that nothing can be done to decrease these side effects.

lizdeli said:

Hips....
Hi Lemonade
Welcome to the forum. Happy to hear that you are survivor! The hips...yes they do ache. My right hip and the thigh area right below have bothered me since treatment ended (9/09). I can't say it hurts, its more of a dull ache. And I do get stiff now and then when I try to get up. I'm barely 50 and had a bone density test a year before my cancer diagonosis and my bones were in great shape. I attribute it to the radiation. My tumor was on the right side so I assume I was zapped more there than the left. My left side hardly ever bothers me. Exercise seems to help and if I wasn't so lazy about it, I'd probably feel better. :-)

Wishing you well.
Liz

Hi Lemondade
Glad to have you join us. I had radiation in mid '08. Like Liz I have a dull aching pain, most of the time, in my hip and thigh area. Mine is on the left side which is the side that had more of a concentration of radiation to zap a lymph-node. It seems to be aggravated by sitting for long periods and walking up/down stairs. For me, any attempt at trying to be more flexible and active (even though it is uncomfortable) is helpful. I try to walk 3-4 times a week and some days when I start out I am really stiff but by the end of my 2 miles there is such an improvement. I have noticed that the cold weather also seems to affect it. I hope yours improves with time.
Kind regards,
Joanne

hip stiffness
Hi, I have been cancerfree since Feb 2008. My biggest complaint since tx has been muscle stiffness in my hip area. I have talked to my drs but they aren't much help. I have tried yoga, physical therapy, acupuncture, exercise and even bought an infrared sauna. Nothing really seems to help except water aerobics, I just don't get to the pool often enough!! The drs never really warned me of this side effect and my rad dr said its not common. I've been on enough boards to know that it is quite common. I guess my advice would be to keep moving to keep yourself as limber as you can. In the last two yrs my hips haven't gotten any worst but haven't improved either. Don't let me discourage you though, if I lost 20 lbs I probably would feel some better. )

chere said:

Radiation late effects
Hi. I'm new to this forum and am not sure if this is the most appropriate place to post my comments. I was treated with chemo/radiation for anal cancer in 2002. Since then I have had the following events:

1. October 2005: Total right hip replacement after 2 years of severe arthritic pain.
2. February 2009: Surgery to remove right groin lump which turned out to be benign undiagnosable tissue.
3. September 2009: Breast cancer (DCIS) diagnosed; lumpectomy and followup surgery to create clean margins plus 2 months of radiation therapy.
4. April 2010: Surgery to remove regrowth of right groin lump; again tissue was benign, but femoral vein was nicked and now is 1/3 of normal size in groin area.
5. November 2010: Total left hip replacement after a year of off-and-on pain.

I believe that all these events except the breast cancer are downstream results of my 2002 pelvic radiation. My radiation oncologists deny the connection. The second occurrence of the groin lump was definitely scar tissue as a result of the first groin lump surgery, but all my doctors are clueless to explain the first groin lump. The first groin lump had to be removed as it made my entire right leg swell. No doctor can give me any idea whether this problem will recur.

I have not seen or heard of any experience like mine, but I'm hoping that someone has. Thank you.

Hi Chere
You have had quite a time of it since your treatment for the anal cancer. I'm sorry it's been a rough road for you. I think there are SO many things that can happen as a result of the radiation--it does some real nasty things to us. The hip pain is something I've experienced and seems to be quite common among many of us. Based on comments by some who have been through this treatment, some doctors seem to be quite clueless or in denial when it comes to long-term side effects of radiation. Thank you for sharing all of this with us. We all need to be aware of what can happen. Take care.

ejn58 said:

Get Massages
I went through chemo/radiation in january and february this year and had the stiffness. I started getting massages in April/May and it helped me get going. I got away from them and started having more back pain. Went for a massage a couple weeks ago and it again was an improvement. I will stay on a more regular schedule now. Keep pushing forward! Eric

Something else to look
Something else to look forward to, yea! I've always considered myself extremely agile and flexible. I'm the 50 year old that is usally sitting cross legged on the floor with the kids at family gatherings. To consider losing that ability makes me want to cry. I will do everything in my power to stay limber throughout this ordeal. I have a question, and one I will ask my doctor when I begin my treatments, but if we are targeting the anus with radiation, they why do they not flip us over on the table, and go at it from the rear. Why is the radiation given through the pelvis area?

mbh97766 said:

Something else to look
Something else to look forward to, yea! I've always considered myself extremely agile and flexible. I'm the 50 year old that is usally sitting cross legged on the floor with the kids at family gatherings. To consider losing that ability makes me want to cry. I will do everything in my power to stay limber throughout this ordeal. I have a question, and one I will ask my doctor when I begin my treatments, but if we are targeting the anus with radiation, they why do they not flip us over on the table, and go at it from the rear. Why is the radiation given through the pelvis area?

I am from the CRC board.
I wanted to tell you that I can sit cross-legged after 25 rounds of radiation with chemo. In fact, I think I do it rather well. I don't know that my onc would like me to do it; she doesn't even like it when I cross my feet (worried about bloodclots).When I had radiation it was given to me from all 4 directions. The table didn't turn over, the radiation machine approached from all directions.

Radiation Side Effects
4.5 years ago, when I was diagnosed with early Stage 2 anal cancer, this site did not exist. I had the standard chemoradiation treatment (called the Nigro Protocal) and ended up hopsitalized for 2 weeks because of the radiation burns, pain, no white blood cells etc. However, I am a VERY grateful cancer survivor!! Truth of the matter though, no one told me much about treatment, let alone addressed long term side effects. I did as much research as the internet allowed me to in 2006.

Like one of the posters on this site, I felt like I had aged 15 years or so after treatment. Luckily, I have been an ardent gym type for the past 12 years and this came in very handy when I was healing because I had established a standard of physical agilty, strength and cardivascular fitness. It took me at least a year of intense working out before I reached my prior level of fitness.

Like all who have posted, I have serious hip issues. I have gone from no arthritis to advanced arthritis in the left hip in 4.5 years. I took up yoga 3.5 years ago (yin yoga is my preferred type) and this has really helped to keep stiffness at bay and maintain range of motion. I highly recommend yin yoga for all those whose who have survived this most difficult treatment.

One of my many take home lessons is that movement is good, stagnation not so good. Or put another way, if you don't use it, you lose it.

I have a very clean diet, don't smoke, don't drink alcohol, try to eat organic, eat no processed foods, no white or white sugar and am moving to a plant based diet. I have taken an interest in Traditional Chinese Medicine and highly recommend Paul Pitchford's authoritative book, "Healing with Whole Foods: Asian Tradition and Modern Nutrition".

I wish you all the best of luck as we continue our healing journey!!