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POST RADIATION PROBLEMS HIP AND PELVIC BONE DAMAGE

lizgino's picture
lizgino
Posts: 7
Joined: May 2012

Is anyone dealing with this?  I was diagnosed in April 2011 and had my treatments (chemo and radiation) through May and June.  I was stage III so I had pretty intense radiation, including pinpoint to specific lymph nodes that were affected.

I have extreme low back pain, spasms (he says probably related to muscles trying to support joints), my hips are tight and always sore.  The pain is constant, dull and REALLY uncomfortable.   He examed me no signs of returning cancer in anal area, but did CT Scan to clear rectum and lymph nodes.

Just wondering if anyone required hip replacements down the road, or had problems walking, etc.  I'm going to begin Les Mill's flow class (yoga, stretching, ti chi etc to work on flexibility).

MD says not much can be done, and that  radiation side effects will continue.  Any guidance will help! Thanks!

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I know that our friend, Alyse, on this board has undergone a hip replacement post-treatment for anal cancer.  Perhaps she will see your post and chime in.

My experience has been with limited flexibility and tightness in my hips.  I have no problem running, but abduction/adduction of hips is limited.  Hip issues seem to be common after pelvic radiation, so we are not alone.  Many people have gottem improvement with yoga, so I hope that will work for you!

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

Hi Martha-i haven't been on in a long time...But i did notice The Hip  pain question. I wanted to say Hello to you too.Im doing well...The new hip works great..I am playing golf 3xs a week and am very active all around.I definitely stiffen in my pelvic area and have intermitten trouble with sciatica.I have started to go for massages and they seem to help alot.All in all..i am very lucky and feel almost normal...I hope you are doing well martha...its 5 years NED aug 14th.xxxooo...hugs..alyse

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I am so glad to hear from you!  Wow, it sounds like you're doing great--so happy to hear that!  Your timing couldn't have been better, as I had some hip pain over the weekend.  I think it was from too much yard work last week, when I stood for too long.  It's feeling better now.  I was back to running yesterday.  Today, I'm off to see my med onc to get the results of Monday's CT scan, so wish me luck!

I will certainly be thinking of you as you near that 5-year mark!  Mine will be on Sept. 9th.  I wish we could celebrate together!  It doesn't seem possible that it's been 5 years for me--how about you?  If we continue to do as well as we've done already, we're going to be around for a long, long time!  Take good care, my friend!  Love and Hugs!

eihtak
Posts: 835
Joined: Oct 2011

Hi, I am just a couple months ahead of you, finished treatment in April 2011 for stage 3b. I started a gentle yoga class about a year later for similar reasons and it has helped tremendously. I only go to a class occasionally now, but do the poses/stretches daily even for just a little bit. I am 54yrs old but back in the day (lol) took a lot of dance classes so was really bothered by the lack of flexability. I feel like along those lines I am close to where I was pre treatment now! Start slow with stretching and don't get discouraged. Radiation!!!!!

sephie's picture
sephie
Posts: 523
Joined: Apr 2009

lizgino,  i had such severe pain from hip thru thigh after tx for about 6 months then it lessened...also my rad. docs said that sacral insufficency fractures are very common for radiation to pelvis ,,,,, lower spine is affected also...osteoporosis is common after this tx... i do have that....try to strengthen your back muscles...  i would guess that hip replacements might be common (mostly later on in life) due to this radiation....  keep moving to try to lesson pain.....   get checked for osteoporosis also.... sephie

Angela_K
Posts: 374
Joined: Jan 2011

I think you pursuing yoga, stretching and tai chi is wise.  I had been having  hip pain growing significantly worse since my treatment ended in Jan of '11 but have found a consistent anti-inflammatory diet and consistant chiropractic care over the past 2 months has helped considerably. It hasn't been overnight, but the gentle chiropractic adjustments are now beginning to stabilize (hold) and I can truly say that I am pain-free about 90% of the time and when I do hurt, it so very manageable. My best advice is keep moving and keep your core strong to support your spine (including hips)! And seek out a reputable chiropractor. I wish I had started preventative chiropractic care years ago.

 

Blessings,

 

Angela

Sundanceh's picture
Sundanceh
Posts: 4283
Joined: Jun 2009

I'm from the colorectal board but I've found that anal and rectal can have some common ground, due to the locations of our tumors being down so low originally.

Yes, I've also had severe hip and back pain...my radiation treatments (for these areas) go back nearly 9-years now...they have always been horrible....but I've found that the condition has begun to worsen the past couple of years.

Any type of hard work or just plain bending wears me out and the pain can be intense...most of the time I ignore it...a couple of times I had to take a Tramadol because the throbbing was so bad.

My lower back suffers where they beamed me...and I now have AVASCULAR NECROSIS, which in short, means I've suffered alot of damage to both hips due to lack of blood flow to the joint.  Over time, this results in the death of the joint.  The only remedy for that solution appears to be a hip replacement.  My condition has returned to 'stable' since I wrapped up my last treatment, so I'm treating it very gingerly and pick and choose the activities I participate in

Just bending to tie my shoelaces seems like an Olympic event, LOL!

I try and stretch some to prevent becoming more rigid...treadmills are hard to walk on now...but I found that an elliptical trainer felt pretty good - it allowed me the flexibility for what seemed like a normal range of motion without the intense pain....so I'm going to be incorporating that going forward for as long as I can.

Hip replacement will at some point come into play for me, I'm sure.  I'm about to go to 52 in a month or so, and I'm going to delay that as long as possible....I've missed alot of time at work over the years with cancer and don't want to address this unti I have to.  Most doctors recommend not having to start doing replacements at such a young age, because you'd run through a few pairs.....along with associated recovery time and cost of course.

Two of the leading causes for Avascular Necrosis are:  (1) Radiation   (2) Chemo

So, I'm convinced that is more than a coincidence. 

One of the things I've found about living so long with cancer is what the don't tell you upfront in the brochures you find in the waiting room lobby.....they don't tell you what to expect if you do survive it.

Having made it nearly 9-years, I don't have to tell you that this is a lifetime in the cancer world.  And sometimes, you can get so far out, that you meet or beat everyone's prognostications and/or expectations....

I've always said we have to trade Tomorrow for Today in this fight - and we have to be able to live with the consequences of the decisions that we make - and that are made for us.  I'm sure that is in the fine print of one of pamphlets:)

My concern going forward (is/has been/will be) what reprucussions are still to come if I continue to log the years?  What changes will my body reveal from the fallout of the many treatment choices I've done?

But, we just do the best we can. 

You've been given some great advice on this topic....radiation is always a lightning rod for me....I've done it in my lung too, but that's another story for another time:)

Congratulations on your success and best wishes on your recovery!

-Craig

 

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

Sundanceh - I just saw your very thoughtful post..... You are so right, hardly any information is given to cancer patients about what to expect after treatment. Dr's seem to draw a blank when you ask them about post-treatment side effects as if they've never heard of them before....... yet when I go on this forum, it seems almost everyone has very similiar side effects after radiation to the pelvis..... Congratulations on making it nearly 9 years!! I always like hearing about long-term survivors!!! Gives us all hope and encouragement!

Angiebentley66
Posts: 1
Joined: May 2013

I had Non-Hodgkin's Lymphoma-five tumors in my left pelvis area. I had seven chemo treatments, and 20 rounds of radiation. Since completting radiation, my left pelvis bone and hip hurt continuously. I can't barely walk. My oncologist said that there was nothing that could really be done- that it's just a long-term side effect of treatment. My Internal Medicine doctor has sent me to physical therapy at a wellness center. I met with my therapist yesterday, and she is devising a plan for pool therapy. I will begin on Monday, and I pray this will help. As a school teacher, if I can't get beyond the pain, I will not be able to go back to work in the fall. There is a program called the STAR program. It is a rehab program specifically for cancer survivors. There is not one offered near my home, but you should check in your area. It is a wonderful program that offers nutrition help and physical therapy.

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Hi Lizgino,

We were diagnosed around the same time. My diagnosis was May 5, 2011. I was in an extreme amount of pain before my diagnosis, I think perhaps because of the location of the tumor(s). I had multiple tumors in the pelvic bowel adanexal in nature, one of which was ten centimeters, so there was a lot of pressure on nerves in the sacroiliac.  Like you, I also was stage III invasive squamous cell anal cancer with lymph node involvement and received highest levels of radiation. I now have Genital Lymphedema but honestly realize that the cancer in my lymph nodes as well as the trauma from two surgeries (I had cervical cancer and a hysterectomy at 25).

I guess the good news is with the Lymphedema treatments they gave me Manual Lymphatic drainage several times a week for months and taught me to do it myself. Exercise is really important with Lymphedema and since I did not want to become deformed or die from lymphedema I have been quite motivated, lol. I joined a gym. I can't believe how far I have come. I am 63 and look around and see that others much younger are not having as much fun with Zumba as I am! I also like kickboxing - can you believe it? But the best by far exercise for lymphedema is swimming.

I am not suggesting you have lymphedema, but I think a lot of people could benefit from MLD or Manual Lymphatic Drainage.

I have back pain, neuropathy and muscle spasms. I take Lyrica every day, and when necessary, Naproxen. I do not seem to suffer side affects from Lyrica. Naproxen, on the other hand can contribute to acid indigestion and since some times I eat lightly, taking with food doesn't always work.

I am also anemic both white and red blood cells. I find 5 hour energy shots (no more than two a day!) and often I don't need one are  absolutely wonderful. If you read the label, they are primarily a B vitamin shot with a little caffeine. I find the B vitamins work as well as the Naproxen some days.

Hope this has been helpful.

By the way, Angela is absolutely right about Tai Chi. I did Tai Chi with DVD's at home prior to and during treatments as well as for almost two years after as well as walking. Zumba is just Tai Chi on steroids, ha, ha! Tai Chi is a great way to slowly regain flexibility. But Zumba is a great way to have fun and move around.

All the best,

Sandy

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