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Radiation Side Effects

lemonade
Posts: 63
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: 4408
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: 63
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: 3880
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: 3880
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: 671
Joined: Jul 2011

oops.  Did not notice date. Sorry.

Nona12
Posts: 2
Joined: Jun 2015

My husband is 1/2 way through his radiation treatments for rectal cancer as  of today.  Within the last 5 days or so he is up at night with severe aches in his hips.  This is a new complaint for him.  He has never had this before.  I talked to his nurse that said hip pain should not be a side effect.   This is a man that never complains and has to be threatened to take his B/P meds daily.  ;-}.  He was almost in tearas last night with this.

The nurse did say it could be pain from bone marrow stimulation from the radiation.  HIs platelets have dropped some and that would indicate a change there.

My question is:  What can be done to ease this severe ache/pain?  It's deep.  It only botheres him at night.  He's upu around 1:30 am and stays up all day as he works.  He's home today in bed.

Any suggestion is welcomed.

 

Judy

Phoebesnow
Posts: 548
Joined: Apr 2011

Welcome! I have never heard of this so early in treatment. Have you asked the oncologist? You could ask on the colorectal board.  They have more experience with rectal symptoms.  Start a new subject, thread and you will get more attention.  You can try colon talk  amother support group.

I hope your husband finds relief soon.

lindylee1
Posts: 1
Joined: Aug 2015

thanks so much for your post. Several months after I completed radiation I suddenly couldn't cross my leg to tie mY shoe!

i have been dong stretching exercises and walking and hiking. Hiking is better than walking. I also get acupuncture and follow it with a massage. 

I am going to talk to the Dr tomorrow. I had no idea this was a side effect. 

Lindylee

jdblack
Posts: 2
Joined: Mar 2016

Hi Craig,

    Having read your account of your struggles post-radiation, it's as though I was reading my own story. I had anal cancer last year, had 35x radiation tx and 2 rounds of chemo. The radiation has done a great deal of damage to both of my hips, my lower (sacral) spine, and my anal sphincter. I am also an aged person in comparison to pre-cancer treatment. It can't be changed, so I do the best I can. I'm now 56 y/o, but feel older sometimes. My name is Jim. Thanks for your thoughtful and well-written post.....not falling on deaf ears with me!

Phoebesnow
Posts: 548
Joined: Apr 2011

hi,

 

welcome to The site.  You got lost in this old thread.  I am sorry to hear of your difficulties, hopefully they will improve with time.

Stephen2
Posts: 7
Joined: Jan 2016

HI: I am 3 years out from having Anal cancer and now am cancer free.  I do agree with Craig, it does not get any better, at least not for me.  I am now in a wheelchair and have extensive nerve damgage in both legs.  I cannot stand at all and thankfully have aides who help me quite a bit.  Still on pain meds but trying to cut down.  Will be seeing another specialist in the Fall but, truthfully, don't expect much new for my condition.  My braces don't help much, both feet turn outward so that naturally makes standing impossible.  Anyone else in a wheelchair?  I am home in an apartment for the disabled which helps a lot.  I am sorry to be such a downer but I don't mean to be.  At least I am home enjoying Netflix and my grandchildren who visit often. Not necessarily in that order) I am waiting word on an electric wheelchair which I would love to have.  My shoulder is quite sore from wheeling myself around, I also had a mastectomy on that side many years ago but, unlike now, I did not need chemo or radiation. My anal cancer was detected late, actually, since my dr. kept calling it a hemorrhoid but without actually examining me!  If anyone out there has neuropathy as I do please let me know if you have found any way at all of relieving it or making it better.  I will try just about anything.  Best wishes to all, enjoy the summer.  Stephen2  

mp327's picture
mp327
Posts: 3880
Joined: Jan 2010

I am really sorry about all you are having to deal with.  People who have not been through this treatment have no idea how much collateral damage it can cause.  I do not think you are being a downer.  You are someone who has suffered pain and disabling side effects.  I hope that if anyone has any suggestions for you that they will post.  I'm sorry that I cannot offer any advice.  Hopefully, the specialist you will be seeing can help you.  Please let us know how that goes and take care.

Martha

Stephen2
Posts: 7
Joined: Jan 2016

Oh, oh, seems it did "take."  Sorry!

Trubrit's picture
Trubrit
Posts: 3253
Joined: Jan 2013

Our Lion. Gone to live with the angels. 

Radiation is the pits, but, I'm alive because of it, so what the hey. 

I hope you are able to learn to cope with the side effects. Sadly, radiatoin can be a gift that keeps on giving. 

Gone are the days I can put my socks on without turning it into a marathon event. 

SUE (from the CRC forum) 

mp327's picture
mp327
Posts: 3880
Joined: Jan 2010

I am so sorry to hear about Craig.  I did not know of his passing.  He came here often to offer us in the anal cancer group encouragement and support and gave us some smiles along the way too.  How sad it makes me to know that he is no longer with us, but thanks for letting us know.  May he rest in peace.

Martha

westie1981
Posts: 1
Joined: Dec 2016

Hi there I am very new to this site and newly diagnosed with anal cancer just 2 weeks ago.  I have Crohn's disease which I have been treated for with an immunosuppressent just 8 months or so ago.  I had a routine colonoscopy and asked the surgeon to pleeaaase take off the hemorroids as they are excruciating.  He just said no it would have to be by general anaesthetic.  This was done within weeks.  It was really sore and the sutures came out unintentionally, so it was an open wound, it became infected, no follow up was needed I was told when discharged. 7 weeks went by and I had a telephone call from the hospital with an appointment to see an oncologist!  2 very intense days were spent trying to get answers from my doctor, the hospital etc.  It turns out I have squamous cell carcenoma and thought he sample was clear on one side the other side was in doubt so it means going through surgery again and removing the Crohn's portion of my bowel too.

I am feeling very let down by the doctor who removed the lump.  How long does a biopsy take to test? Is it normal to take 7 weeks?  I'm not sure what further treatment is needed but the thought of radiotherapy 'there' horrifies me.  Are there any alternatives?

My gp's have treated me for hemorroids for at least 12 months without even examining me, this can't be right can it? I've moaned about them enough and the fact the creams did nothing. They have also said the immunosuppressents could have caused this cancer. I'm so confused by all this and feel very let down by the medical professionals I have seen.

mp327's picture
mp327
Posts: 3880
Joined: Jan 2010

I became angry as I read your post and learned how long it took for you to get your biopsy results.  This is SO not right.  I was diagnosed in 2008 and my doctor had my biopsy results within a few days.  I am so sorry that your journey has gotten off to such a bad start.  I hope that things will go better from here on out and that the other doctors who will be involved in your treatment have experience in treating anal cancer. 

I can understand your fear about radiation, as it can be a tough road for some people.  However, the course of treatment is relatively short, as compared to treatment for other types of cancers.  Typically, it will be 5-6 weeks at most, and there are lots of things that can be done to relieve some of the bad side effects.  You are already hooked up with all of us here and I can tell you the advice from those who have been through this already can be invaluable.  There are many here who will be forthcoming with tips and advice to help you get through this.  All you need to do is ask.

So that you are well-informed about what lies ahead regarding treatment, I urge you to get on the website for the National Comprehensive Cancer Network at www.nccn.org.  You will need to do a quick registration first, but then you'll have access to the latest guidelines for the treatment of anal cancer, along with a lot of other good information.  Education is key when talking to your doctors about treatment.

As for alternative treatments, there are none that I am aware of.  This treatment (chemo/radiation) has a high rate of success.  It will not be a fun few weeks, but getting the most successful treatment is what will rid you of cancer.  I wish you all the very best and hope that you'll keep us updated as you move towards getting a treatment date and plan.  You can do this!  Take care.

Martha

Stephen2
Posts: 7
Joined: Jan 2016

Hi, tried responding to this post yesterday but it seems it didn't "take."  I agree, it will always be this way.  Since my radiation in 2013 the nerves in my legs are not lined up or connected to the muscles as they should be.  In the beginning the pain was horrific.  It has calmed down a bit but is still with me and I think it always will be.  I cannot stand at all so I am in a wheelchair probably for the rest of my life.  I am sorry this sounds so discouraging but, after reading some of these posts, I realize it could be a lot worse.  Rehab was tried but stopped after about three sessions.  Since my legs couldn't support me there wasn't much that could be done.  Is anyone out there in the same situation?  Also, if anyone has found a different or better way to deal with this, please let me know as i would certainly be interested.  Seeing another specialist in the Fall and keeping my fingers crossed but feel this is permanent.  Best to All of you, Stephen2   

lizdeli's picture
lizdeli
Posts: 567
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!!!!!!!!!!!!!!!!

Anonymous user (not verified)

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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: 63
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: 3880
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: 1391
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: 3692
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

JuneD
Posts: 2
Joined: Oct 2016

I dont know where my texts keep going but I have severe hip and back upper middle since I had WBRT in early July this year. I feel like an invalid if I dont take my pain meds gonna try and post 

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: 63
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: 63
Joined: Feb 2010

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

z's picture
z
Posts: 1391
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!

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