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Radiation Side Effects

lemonade
Posts: 62
Joined: Feb 2010

I am so relieved to have found this discussion group. So far I am an anal cancer survivor. Was diagnosed in July 2009 - then had surgery, chemo and radiation. I finished radiation in October 2009. I am having a problem with my hips not being limber at all. I have reduced flexibility and range of movement I used to be able to touch my toes, sit cross-legged on the floor, etc. My glutes, lower back and upper thigh muscles hurt every day. This week I started (without a doctor's advice) some physical therapy movements for hip replacement patients that I found on the internet. Is this normal? Will it always be this way?

I really appreciate everyone's input. Thank you.

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

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
Posts: 62
Joined: Feb 2010

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.

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

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.

pdees
Posts: 13
Joined: May 2011

Oncology nurse called me and said when I came in for my 2:15 appointment and Dr would look at my mouth and then would give me something to help. She prescribed some mouth wash and lidocaine to take before every meal and at bed time. It has helped, so looking forward to a better tomorrow. Thanks to all that gave me things to do about my itching scalp and tooth paste. Can't say enough good about all the things I have learned on the forum. Sure perks a person up when you have problems and can go to this site and get answers.

BC331
Posts: 12
Joined: Nov 2012

Hello MP327, I am new to this sight and have just been diagnosed with anal cancer. Just preparing myself for treatment and want to be as proactive as possible. Im wondering if you also ran during your treatments? Were you actually able to? Im thinking of also taking up Yoga
as well.
Thanks for any feed back you have on exercise during the 6 weeks of treatment. =)

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

I'm very sorry to hear of your recent diagnosis, but I'm happy you have found us on this site and I hope we can help you get through this.

As for exercise during treatment, mine was curtailed due to fatigue, diarrhea and weakness. I had to stop running. However, I have a treadmill and tried to walk on days when I felt up to it. I think any exercise you can get during treatment is beneficial. My best advice is to push yourself only as far as is doable and no further during that time. Your body will be letting you know what it can and can't do, so listen to it. You will need plenty of rest and fluids. Also, I recommend getting protein with each meal or snack. Eating became difficult for me towards the end of treatment, as I had absolutely no appetite. Protein drinks were helpful, but didn't taste very good to me then!

I would definitely try to get in some walking whenever you can. Yoga will help also, keeping you flexible. You may have read on this site already that a common post-treatment side effect is hip pain/stiffness and reduced range of motion. If you can keep moving during treatment, it should help you.

I wish you all the best and hope you'll keep us posted on how things go. I hope you get started with your treatment soon so you can get on the road to recovery!

Lorikat's picture
Lorikat
Posts: 557
Joined: Jul 2011

oops.  Did not notice date. Sorry.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

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

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

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

ACW189
Posts: 24
Joined: Feb 2009

Hi Lemonade,
Yes, all concur radiation DOES in fact impact the hip, lower back, thigh and hamstring muscles. I had much tightness and aches in the thigh, groin area during/after treatment for stage I SCC anal canal. I still have occasional pain in lower back and right hip/buttock area (performa muscles?). I did have physical therapy and it helped ALOT!! I do weekly yoga -- excellent results! While I know I will never get my face to the ground in a leg split; my flexibility has improved alot -- still hurts but I CAN get my knees down to the floor in the sitting butterfly pose (great for groin). I also get a massage at least every other month and do steam canapy therapy which warms the muscles and expels toxins. Getting up from a sitting position takes a bit of concentration, as the hips do get stiff. Keep moving, best advise.
My Best,
ACW

pokeyrose
Posts: 1
Joined: May 2010

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. :))

SueRelays
Posts: 489
Joined: Dec 2009

Hi

I too had horrible pain in my hips...couldn't sleep on my side which is the only way I can sleep! When I told my radiologist, she said that the radiation will cause arthritis in the hips. Thanks another bonus....besides being thrown in to menopause. It just keeps getting better :)!! But I did find relief from acupuncture and massage. I know acupuncture doesn't work for everyone, but it has been incredibly helpful for me. Might at least give it a try!
CONGRATS on being cancer free!!!!!!!!!!!!!!!!

cbs6931's picture
cbs6931
Posts: 63
Joined: Mar 2010

I just finished radiation two weeks ago, and am noticing pain in my bones (hip, pelvic, ect)and stiffness, and did not know what to think about it. Its at its worst in the mornings when I get up. Just something else I did not expect - so its nice to know that at least others are experiencing it and it is a result of radiation. I'll make sure to get a bone density test as others have suggested, and get started back at the gym as soon as I can. THANK-YOU!!!!

Cathy

lemonade
Posts: 62
Joined: Feb 2010

Hello Everyone -

I originally posted this question. I have been on the discussion board for just a few months now. I started physical therapy about 3 weeks ago for my hips. I went to 2 sessions. I started out doing it every day and now I do it 3 X per week. It has helped immensely. I was feeling the most pain deep in the muscles where they attach to the pelvis. If anyone is experiencing this, you might want to go to physical therapy for a couple of sessions. They gave me some exercise instructions with pictures so I could remember what to do. I asked the therapist if she had worked with anyone who was having problems due to radiation. She said that she had worked with breast cancer patients who needed to get back their range of motion through the pecs and shoulder area. I am sorry that others have these problems, but at least I don't feel like I am crazy for experiencing this side effect.

Barbara

chere
Posts: 1
Joined: Nov 2010

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.

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

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
Posts: 7
Joined: Sep 2010

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

mbh97766's picture
mbh97766
Posts: 39
Joined: Nov 2010

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?

z's picture
z
Posts: 1249
Joined: May 2009

Hello,

You will still be agile. I have a job where I'm on my feet and sometimes have to lift up to 70 lbs. I play with my friends 2 1/2 year old on the floor and throw him all around. In other words I have regained all of my strength and flexibility. It just takes a little time, but it will come back.

I believe they radiate you this way to cover all the lymph nodes in the area, and I think if you were flipped the other way the radiation wouldn't be as effective. Just my guess. You will be fine, you have to get this cancer out of you. I had the IMRT which is more accurate and not a blanket radiation that zaps everything over and over. Before IMRT came out they would give blanket radiation, which causes more damage. My tx was on 6-3-09. I wish you well Lori.

AnneCan
Posts: 3693
Joined: Oct 2009

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.

sherinc
Posts: 6
Joined: May 2010

I had the same at 30 treatments from all sides and am facing many of the side affects I have read from this site. Also the loss of,before radiation " healthy tissue" I will have surgery in Jan.13. I can finally boast that I have tatoos. lol

grandma2selena's picture
grandma2selena
Posts: 199
Joined: Jun 2009

I have to say that was the hardest thing for me to deal with after my treatments. Sometimes my hip pain was so severe I couldn't walk. It has gotten better over time. I do notice my hips bothering me at times, and almost feeling like they cramp up a bit or catch in the socket. This is improving. I started my radiation in Dec of 2008 and finished them in Feb 2009. It takes time, but I do believe this will improve. My doctors told me to go for any type of exercise I could do especially walking. They labeled this condition as Radiation Recall. There is so much damage done to the cells in that area, and all those cells have small nerves, that will on occasion say they hurt still as they are trying to heal and repair themselves. Will it ever get to 100% normal, I doubt it, but yes, it does get better.

ina2525
Posts: 5
Joined: Jul 2009

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!!

James80916
Posts: 9
Joined: May 2011

Hi There...
I too dont smoke (never have) and drink wine once in a while. I moved to an 80% all natural/organic diet and am taking Curcumin to help with precancer cells. How is the diet working for you? Were on it before you came down with cancer?

My doc found a 3cm growth in my anal canal today and will be doing surgery on June 7th at which time I will find out if it's cancer or not. She said it doesnt feel like a cancer but cant tell until it's removed.

Thank you for your encouraging testimony of your healing journey.

Jim

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

It is so great to learn that this is normal after radiation, because I have been having problems since my raidation in 2008. The doctors kept telling me that it would get better over time but it hasn't. I have good days and bad, but I have problems everyday. I use a grabber now to help me pick things up that have fallen, and I just try to keep moving my legs and hips moving even though it is painful and difficult. I have been sent to physical therapy twice for this problem for three months each time and my mobility never recovers. I think the radiation did permanent damage and there is nothing they can do to make it back to the way it was before the radiation. My radiation was done front, back and both sides, every day for approximately six months. That alone feeling and that no one understands is not there anymore because now I know there are people out there that do understand.

desertdweller
Posts: 5
Joined: Apr 2011

I also completed chemo/rad in October 2009. Since then I had a colostomy (permanent)May 2010 as the chemo/radiation did not work.The wound abcessed and had a 2nd surgery in Sept 2010 since that time I have home health nurse went on a wound vac and now preparing for hyperberic to try to heal the wound. My lower back and lifting and moving in general is very difficult. From what my Doctors say all of my problems are a result of radiation..if I had to do it over I would never have had the radiation treatment, it did much more damage than good. My Doctors never advised on these severe side effects. My life has changed drastically over the past 11 months and feel like it will never improve. I live off of Oxycodone Oxycontin and Lyrica without which I would not be able to move. I am hoping that this wound, which needless to say, is a pain in the a--!!literally. In addition to the anal cancer I have very severe psoriasis which is also contributing to my pain levels. Life is not fun at the present.

alis7910
Posts: 80
Joined: Jun 2010

So sorry to hear that you have had so much pain. If you are interested in alternative medicine, you might try acupuncture, herbs, and energy healing work, like Reiki.
Hugs to you

chelceyrose
Posts: 6
Joined: Jan 2011

I am so sorry to hear of your problems. I finished radiation for anal cancer in April 2008. The doctors do not inform you of the possible long term side effects. I now am looking at colostomy because the radiation has shrunk the anal/rectal/lower colon to where it is extremely painful to have a normal bodily function. The radiation also damaged and shrunk the female parts so intercourse is no longer a part of my life. I am now 56 - but sometimes feel 86. What I didnt even think of is the radiation causing such problems with lower back and "unexplainable" bone pain. It never dawned on me it was the radiation. I am very thankful and praise God every day to be alive - for my kids, grandkids and family. But - like you - life just isnt very much fun right now. Blessings to you desertdweller. Blessings to everyone on this website. All though I feel for each and every one of you - it is comforting to know there are others experiencing the same problem with side effects from radiation. God bless you all.

lemonade
Posts: 62
Joined: Feb 2010

I have been taking pain meds every morning since I finished treatment in October 2009. I am NED and am grateful for that. I wish the radiation dept. would recommend aftercare. They burn the hell out of you and send you on your way. I signed a form before treatment, but I think some counseling at the end of treatment would be extremely helpful.

I developed lymphedema in my legs and have to wear knee-hi compression hose every day. I also have to pump my legs every day for one hour. I live in Houston and it is so hot wearing those "socks". Say bye-bye to shorts (except for around the house) and short dresses. Buying shoes to hide the socks is a bit of a problem also. I went shopping the other day and got depressed because I can't wear the same clothes that I used to be able to wear. Those hot socks are also a real treat when I have hot flashes from the menopause that I was thrown into during treatment. I also have problems with my hands - it is either neuropathy from chemo or carpal tunnel - and have to wear braces at night when I sleep. My hands aren't as strong as they used to be and it feels like I have arthritis in them. I also have pain in my elbow that feels like tennis elbow. My hips and back hurt like hell all the time too. Oh yeah, and my knees hurt too.

Sometimes I really don't like myself very much because I am grumpy from the constant pain. This has affected my social life as well, because I just don't ever feel good. I have found myself not answering the phone and avoiding situations where there are a lot of people or crowds. I just feel more comfortable at home. Whenever I go out to eat dinner and sit for an hour or so, I get so "stove up" from not moving and I walk like I'm 90 years old when I leave the restaurant.

I am on disability and have lost a friend because of that. She thinks I am some kind of deadbeat because I am not working. Such compassion!!!!

I am grateful to be alive, but the after-effects are worse than the treatment. At least the treatment only lasts 6 weeks. I never dreamed I would feel this bad after treatment. The worst part is that everyone thinks you should be fine after treatment, and they don't understand. I am thinking about looking for a support group.

Barbara

lemonade
Posts: 62
Joined: Feb 2010

My female parts feel screwed too - and not in the good way.

z's picture
z
Posts: 1249
Joined: May 2009

Hello Barbra,

I sure hope you will find a support group for your pain, or even a pain management facility to help ease as much of the pain as possible. I have read where anal cancer survivors do yoga to increase the flexability of the damaged areas from the radiation. Please look into the pain management, its terrible enough to have to go through this tx and then not be able to enjoy your life makes the tx that much worse. I hope you will find some relief. Lori

tobgah
Posts: 6
Joined: Mar 2011

Hi Barbara,
I just read all your posting and I am sorry that you are feeling excatly the same type of pain and problems as me. In July 2009 till September 2009 I had abdominal radiation because of I had a tumor. It was called retroperitoneal liposarcoma. I had the surgery in Nov.2009 and they remove major muscles such as Quadratus lumborium, part of my psoas and iliac muscles. Anyway until today 2.5 years later, I am still experiencing pain and some tenderness in some areas. The most thing that bother me is the fact that I feel tightness and stiifness in the lower back/hips region and the lower right front quadrant. The weird thing for me is that the more I walk, the more it becomes tighter. Sometimes, people look with disbelief when I tell them that as I keep walking the more tightness I feel in my hips and lower back with burning sensation. Then I have to stop and rest. I am also in disability and I wonder if I will ever be able to go back to work. I know that the physical demands and mental demands of my career ( HR/Payroll) will be difficult to meet especially when I am having pain and not able to move as fast as I did prior to my cancer treatment/surgery. I can no longer do any fast paced let alone do multi-tasking. When I get tensed or stressed out, my muscles starts to feel tighter and experience more pain.
It is confusing cause my brain tells me that I should be able to do things but when I attempt to do things physical movements, my body cannot do it freely without experiencinf pain and stiffness. Prior to my radiation/surgery, I already was diagnosed with arthritis on both hips and degenerative disc on my lower back. Now i am just finding out from everyone on this post board that radiation also causes arthritis development. My doctor's never mentioned anything to me about this side effects. Even now everytime I mention it to my doctor's they really could'nt tell me anything. My family doctor just keep saying that maybe becasue of the scar tissues and the extent of the muscle removals the reason why I am experiencing my pain and stiffness. I have to accept my new body ( pain & stiffness) on a daily basis. Like you said it is a daily struggle both mentally, emotionally and physically. I am grateful to still be here and that they were able to remove the cancer tumour. I just have to keep being positive, be grateful and pray that my regular CT scan will always be clear and have no reoccurrence of this nasty tumour.

After reading everyone's posting, I don't feel so alone and I realized that I am not unique in my pain/suffering post radition and surgery. I wish everyone well!

tobgah
Posts: 6
Joined: Mar 2011

Hi Barbara,
I just read all your posting and I am sorry that you are feeling excatly the same type of pain and problems as me. In July 2009 till September 2009 I had abdominal radiation because of I had a tumor. It was called retroperitoneal liposarcoma. I had the surgery in Nov.2009 and they remove major muscles such as Quadratus lumborium, part of my psoas and iliac muscles. Anyway until today 2.5 years later, I am still experiencing pain and some tenderness in some areas. The most thing that bother me is the fact that I feel tightness and stiifness in the lower back/hips region and the lower right front quadrant. The weird thing for me is that the more I walk, the more it becomes tighter. Sometimes, people look with disbelief when I tell them that as I keep walking the more tightness I feel in my hips and lower back with burning sensation. Then I have to stop and rest. I am also in disability and I wonder if I will ever be able to go back to work. I know that the physical demands and mental demands of my career ( HR/Payroll) will be difficult to meet especially when I am having pain and not able to move as fast as I did prior to my cancer treatment/surgery. I can no longer do any fast paced let alone do multi-tasking. When I get tensed or stressed out, my muscles starts to feel tighter and experience more pain.
It is confusing cause my brain tells me that I should be able to do things but when I attempt to do things physical movements, my body cannot do it freely without experiencinf pain and stiffness. Prior to my radiation/surgery, I already was diagnosed with arthritis on both hips and degenerative disc on my lower back. Now i am just finding out from everyone on this post board that radiation also causes arthritis development. My doctor's never mentioned anything to me about this side effects. Even now everytime I mention it to my doctor's they really could'nt tell me anything. My family doctor just keep saying that maybe becasue of the scar tissues and the extent of the muscle removals the reason why I am experiencing my pain and stiffness. I have to accept my new body ( pain & stiffness) on a daily basis. Like you said it is a daily struggle both mentally, emotionally and physically. I am grateful to still be here and that they were able to remove the cancer tumour. I just have to keep being positive, be grateful and pray that my regular CT scan will always be clear and have no reoccurrence of this nasty tumour.

After reading everyone's posting, I don't feel so alone and I realized that I am not unique in my pain/suffering post radition and surgery. I wish everyone well!

tobgah
Posts: 6
Joined: Mar 2011

Hi Barbara,
I just read all your posting and I am sorry that you are feeling excatly the same type of pain and problems as me. In July 2009 till September 2009 I had abdominal radiation because of I had a tumor. It was called retroperitoneal liposarcoma. I had the surgery in Nov.2009 and they remove major muscles such as Quadratus lumborium, part of my psoas and iliac muscles. Anyway until today 2.5 years later, I am still experiencing pain and some tenderness in some areas. The most thing that bother me is the fact that I feel tightness and stiifness in the lower back/hips region and the lower right front quadrant. The weird thing for me is that the more I walk, the more it becomes tighter. Sometimes, people look with disbelief when I tell them that as I keep walking the more tightness I feel in my hips and lower back with burning sensation. Then I have to stop and rest. I am also in disability and I wonder if I will ever be able to go back to work. I know that the physical demands and mental demands of my career ( HR/Payroll) will be difficult to meet especially when I am having pain and not able to move as fast as I did prior to my cancer treatment/surgery. I can no longer do any fast paced let alone do multi-tasking. When I get tensed or stressed out, my muscles starts to feel tighter and experience more pain.
It is confusing cause my brain tells me that I should be able to do things but when I attempt to do things physical movements, my body cannot do it freely without experiencinf pain and stiffness. Prior to my radiation/surgery, I already was diagnosed with arthritis on both hips and degenerative disc on my lower back. Now i am just finding out from everyone on this post board that radiation also causes arthritis development. My doctor's never mentioned anything to me about this side effects. Even now everytime I mention it to my doctor's they really could'nt tell me anything. My family doctor just keep saying that maybe becasue of the scar tissues and the extent of the muscle removals the reason why I am experiencing my pain and stiffness. I have to accept my new body ( pain & stiffness) on a daily basis. Like you said it is a daily struggle both mentally, emotionally and physically. I am grateful to still be here and that they were able to remove the cancer tumour. I just have to keep being positive, be grateful and pray that my regular CT scan will always be clear and have no reoccurrence of this nasty tumour.

After reading everyone's posting, I don't feel so alone and I realized that I am not unique in my pain/suffering post radition and surgery. I wish everyone well!

tobgah
Posts: 6
Joined: Mar 2011

Hi Barbara,
I just read all your posting and I am sorry that you are feeling excatly the same type of pain and problems as me. In July 2009 till September 2009 I had abdominal radiation because of I had a tumor. It was called retroperitoneal liposarcoma. I had the surgery in Nov.2009 and they remove major muscles such as Quadratus lumborium, part of my psoas and iliac muscles. Anyway until today 2.5 years later, I am still experiencing pain and some tenderness in some areas. The most thing that bother me is the fact that I feel tightness and stiifness in the lower back/hips region and the lower right front quadrant. The weird thing for me is that the more I walk, the more it becomes tighter. Sometimes, people look with disbelief when I tell them that as I keep walking the more tightness I feel in my hips and lower back with burning sensation. Then I have to stop and rest. I am also in disability and I wonder if I will ever be able to go back to work. I know that the physical demands and mental demands of my career ( HR/Payroll) will be difficult to meet especially when I am having pain and not able to move as fast as I did prior to my cancer treatment/surgery. I can no longer do any fast paced let alone do multi-tasking. When I get tensed or stressed out, my muscles starts to feel tighter and experience more pain.
It is confusing cause my brain tells me that I should be able to do things but when I attempt to do things physical movements, my body cannot do it freely without experiencinf pain and stiffness. Prior to my radiation/surgery, I already was diagnosed with arthritis on both hips and degenerative disc on my lower back. Now i am just finding out from everyone on this post board that radiation also causes arthritis development. My doctor's never mentioned anything to me about this side effects. Even now everytime I mention it to my doctor's they really could'nt tell me anything. My family doctor just keep saying that maybe becasue of the scar tissues and the extent of the muscle removals the reason why I am experiencing my pain and stiffness. I have to accept my new body ( pain & stiffness) on a daily basis. Like you said it is a daily struggle both mentally, emotionally and physically. I am grateful to still be here and that they were able to remove the cancer tumour. I just have to keep being positive, be grateful and pray that my regular CT scan will always be clear and have no reoccurrence of this nasty tumour. Also, I cannot sit down straight for more than 45 minutes as the pain becomes intense in my tail bone and hip area and lower back.

After reading everyone's posting, I don't feel so alone and I realized that I am not unique in my pain/suffering post radition and surgery. I wish everyone well!

txrn
Posts: 1
Joined: Apr 2009

Barbara,
It has been a year since you posted this message and I hope that your pain is now gone; however if you are still having pain and thinking about a support group I would be happy to share experiences with you. I live in your area and have also experienced the same painful side effects.

sherinc
Posts: 6
Joined: May 2010

hello Barbara,
I am 2.5 yrs from conclusion of radiation/chemo. BLAH BLAH . I too am grateful no joke to be alive. Farah had the same cancer as I did and she died 2 years from diag. Farrah did not take the conventional treatment that I and it appears so did most of us. I guess that I am a survivor but is that before 5 years or after? Jeez I am so confused about this point. Your comment about everyone else around you feels all is healed and its time to move on . I can so relate to this. Its like all the world says ok you are treated therefore you are done with being sick. I feel like I am alone in my world. I will have surgery to repair some of the damage from the radiation and continue to survive. Blessings to all.

Ann_i_
Posts: 47
Joined: Oct 2011

I also have Psoriasis and a colostomy (though currently labeled temporary.)

My psoriasis has added complications, trying to maintain a waffer over my stoma while having an allergic reaction to adhesives and then having the blisters turn into psoriasis has made life with a colostomy interesting. (to say the least)

My elbows are bad (mostly because I pretty much lived with supporting my weight on them and still do to a large extent. Just can't seem to break the habit now.)

I'm currently going through a break out phase with my psoriasis so my arse and hips and legs are breaking out, the area under the waffer is all broken out and my hands are breaking out. (I don't usually have breakouts on my hands so I get worried when it hits my hands/palms/soles of my feet.) I'm hoping the break out won't get too severe at this time. (I've got enough on my plate.)

Angela_K
Posts: 374
Joined: Jan 2011

Martha is so right. Exercise helps tremendously. I am 3 months post and have had some trouble with flexibility but have incorporated daily yoga and mat Pilates and it has helped tremendously. I would suggest at least a stretch routine in the mornings and evenings. You will find simple mat Pilates sequences on-line that you might consider. Pilates makes long & lean muscles, promotes flexibility and builds a very strong core while using movements in your natural range of motion. Google Joseph Pilates to get the history of this form of rehabilitative exercise.

Hope this helps. LOVE your profile name, by the way!

Angela

sissy310
Posts: 300
Joined: May 2010

Wow...this thread was very interesting...I too have a lot of stiffness in the hip lower back area and agree, this isn't chemo, this has to be radiation as this area was the area that was zapped. I have not gone back to the gym yet but renewed and will be going in a week or so. Expect to do Treadmill and some light weight training. I have found when I get up in the morning I am so stiff I feel like I'm 163 and not 63. I was always very active and limber so this is new to me to be this stiff - it actually annoys me so I purposely move around and do more.

I didn't realize how stiff I was until I went for my first annual pap in years and could not put my legs in the stirrups. The left leg was okay but the right leg was so stuff in the hip/back area I just could not do it. I honestly did try and kept thinking what the hell? Why isn't my leg doing what I want it to do? The pain was excruciating when I tried. So we had to improvise. Now I'm more determined to do stretches and exercises to keep as limber as I can. I could relate to much of what everyone was saying - even putting on socks and sometimes pants is hard - not the left side, the right side. I expect to try a lot of what was suggested here. Marilyne

melbas2
Posts: 108
Joined: Aug 2010

I am 7 months post treatment and the stiffness is unbearable most days.I used to be a corporate trainer for IHOP, which meant I flew the states to open new stores and train the staff. I would go 150 mph for 12 - 14 hours per day, now I'm lucky to get out of bed. I've applied for Cleaningfora reason, and I've been the next on the list for 3 months. My husband & I are so sick of take out ffood, but I can't stand long enough to cook, or wash dishes, it takes me forever to vaccuum or do laundry because I hurt so bad. Since my appt with my surgeon last week, I am finally seeing and feeling improvent in my butt. So now that the weather here in Nebraska is finally getting warm I'm going to try to start walking. I may have to use the walker at first, but I'm hoping it will help with my flexibility. The other side effect I'm having a hard time with is the constant itchin and the insomnia. My onc prescribed Ambien and I usually take it around 10, 10:30. I'll sleep til abot 12:30 or 1, then I'm up for 3 or 4 more hours, so I'm constanly tired. If any one else is going thru this I' appreciate any and all suggestions. Thanks, Melodie

Captain11
Posts: 88
Joined: Apr 2011

Hi, I am glad I found this topic. I completed my treatments in Mar 2010 and have been cancer free since. I just had a PETscan and will learn the results next week. I hope everything is still okay... I have had constant stiffness in my hips and my calves as well. Also, I have the neuropathy in my feet; more in my left than in my right, which is odd, since I am left-handed... The worse part of this for me is that I have a balance problem. I went for phys therapy, and was told that the balance is in the ankle and that the ankle can't send the message to the brain, or something to that effect. I did pool therapy, which helped immensely for the balance and trying to strengthen the hip muscles, but the chlorine in the pool was terrible on my pelvic area (I assume from the radiation). Is anyone else having a balance problem as well??? Also, while in the shower, if I close my eyes while washing my hair, my balance is gone. As far as the mouth sores, I had dry mouth and couldn't eat for at least 3 days. I used Biotene toothpaste, mouthwash, and lubricating mouthgel. My dr also prescribed BMX mouth solution, which also worked well. The main problem with the drymouth for me was that I couldn't eat or drink anything spicey, hot, chewy, etc. Most foods dribbled out of my mouth as though I was on permanent novocaine. Does anyone else still have any rectal bleeding or hemorhoids?? Mine will not go away and they still have breakthrough bleeding when I strain. I have no urinary problems though. I was diagnosed in June 2009 with stage 3B anal cancer. My first round of chemo and radiation shrunk the tumor, a lot, but I still needed more, since the cancer spread to the lymph nodes, but wasn't detected until after I completed that first round of chemo. Has anyone else been unable to return to work. My previous job, (from which I was terminated due to long term illness) required that I drive a lot and interview people. This is very difficult for me now because of the stiffness and the balance problem. My primary care doesn't think it is safe for me to drive since my feet go numb. Also, it is difficult for me to stand for more than 5 minutes without feeling weak and having to lean on something or sit down. Does anyone else have that problem? I thought I could just get through the treatments and go back to my old life...

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

My first question is why, if you were diagnosed in June 2009 with stage 3B anal cancer, you just finished treatment in March 2010? Thank you in advance for a little clarification on that. As for neuropathy, I've experienced some of that. However, due to a neurological condition that I have, I'm unable to blame that on radiation or chemo for my anal cancer, which I received in 2008. So I don't know if it's from the treatment or the other problem. As for continuing to have periodic rectal bleeding, I have bouts of that, especially after periods of constipation and hard bowel movements. It is radiation proctitis, meaning that the blood vessels in the area that was treated are closer to the surface and are easily irritated by passing stool. I do have some hip stiffness and have lost a lot of flexibility. I try to stretch often and keep exercising, which seems to help.

sephie's picture
sephie
Posts: 521
Joined: Apr 2009

i am 23months post tx and still have bleeding after even soft BM. i do not strain . it is getting better because i can go for days and not have bleeding then it will bleed again. so it takes time. yes, i also have balance problems that i did not have before but never thought about it being due to tx but could be, i guess. i have just now after 23 months been able to sit for any length of time but it still irritates my anal area if too long. just now getting more energy but get tired at 5 pm. i move constantly and do not lay around as much . it takes time. sephie

Captain11
Posts: 88
Joined: Apr 2011

Thanks for your input, re the rectal bleeding and balance problem. I sure hope it will get better. As it is now I am unable to work, or at least anything near to what I was doing, and now it is creating a financial situation for me. Weird thing of all is that I was a caretaker for my father, then my mother, both of whom are now deceased. Then my husband was diagnosed with esophogeal cancer in June 2008. His cancer was surgically removed, but he had mega mega mega difficulties with infections, etc, so much that he was in ICU for 11 weeks, totally medicaed and sedated, after that for another 5 weeks in recovery and rehab until being released from the hospital. I was his care giver from then on until I got diagnosed in June 2009. Both of us are disabled now, and the money is very tight. We are at less than 40% of our previous income, but with medical bills and medical insurance sky-high. I am totally disheartened, which I know I betted shake because stress is not good for reuperation. Any suggestions, anyone?

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

I also still bleed and it will be 3 years this fall. (September 12th was when I was told I was cancerfree). I still had a small portion of the tumor in August, so sometime in there I became cancerfree. I do not bleed daily(well at least not that is noticable), but I do still bleed, and I have had a few scares since when I bleed heavily for a few days to a week at a time, but each check the doc said there was no cancer evident.I have had polyps removed a couple of times since, but was told those were cancerfree. Anyhow, I have been told that I may never be bloodfree cause of the damage that has been done. I just need to notify the doctors if the blood is consistent for more than a week.

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

Hi, I have had problems with balance every since I had my radiation. I have come close to falling a few times. If it would not have been for something close by to grab or a family member I would have. I have told my doctor about this many times. Some days I can walk better than others, but I have had problems ever since the radiation. My doctor has been refusing to give me any pain pills for quite some time. I rushed myself off of them and had to fight ever time after that to get any type of medication to the edge off so I can get around. I think he let me have maybe three prescriptions over about a 8 month period of time, and then told me no more. Yay me. All because I am allergic to some of the milder meds, he has decided I can't have any meds. I haven't had pain meds in over a year and the pain on many days in severe. Sometimes it is just the weakness in the muscles driving me mentally crazy as I can't do many things, but there are days were some pain meds would sure help me get through. The lower back, the hips, the thighs, and I already had bad knees before all of this and have arthritis so yeah, this is just wonderful when trying to get around. I have used canes off and on throughout my recovery and it helps but I just feel stupid having to use canes at my age. I was caring for the elderly and mentally challenged before all of this. I would pick up clients and carry them from their beds to chairs, and back, or from wheelchairs to beds or chairs, and now I can hold a baby but I don't trust myself to walk around with one. I have had days where I have to tell my legs to move many times before it seems the signal will get down to my legs from my brain. The doctors have been told of this also on many occasions. Sometimes my husband just gets up and comes to move my leg for me so I can get it started on moving. I do a lot of leg lifts throughout the day, and bending and stretching also. It helps, but not much.

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

Have you been evaluated by a neurologist? From some of the symptoms you are describing, I am wondering if perhaps this could be nerve-related, such as nerve damage. It would be worth doing in my opinion. If that leads nowhere, you should consider seeing a pain management specialist. It sounds like your doctor is more concerned about you getting addicted to some type of medication than helping ease your pain. I would seek help elsewhere. Just a couple of suggestions.

Worden4's picture
Worden4
Posts: 24
Joined: Jun 2009

Yes, my husband and I both have talked and have decided it is time to find a new doctor becuase we think he is hearing me, but not listening. There are a few other things that have happened that has made us think I need a new doctor also. A neurologist has not been something I have thought about but you could be right. That could be my answers. Thanks. He says, it is becuase the pills are highly addictive, and also because our insurance is pushing him to suggest other natural methods that do not include narcotics. Either way, I am tired of being miserable. I want to have a fulfilling life. I am grateful to be alive and have my family, but I am not mmuch good to them in my condition now.

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