Hip Pain

Wisteria83

Hi everyone!

Hip pain is my most recent post tx side effect.  The pain in my hips and lower back has been getting worse for the last couple of weeks.  It's only been 2 months since tx ended and I really didn't expect this so soon.  Every post I've read about it has said it is a late effect, so I'm wondering if it's because I've been so innactive or if it is in fact, related to the radiation.

I have an appointment next week with the surgeon, so I can wait to ask her what she thinks.  I don't think I need to call my rad onc about it unless she doesn't have any answers for me.

For those of you experiencing this, when did it start?  How long did/have you had it?  Anything help relieve the pain?  Laying in bed at night seems to make it worse since I tend to fall asleep and not move (unless I wake up for potty) so I stiffen up quite a lot.

Because I've suffered with malnutrition, I have very little muscle tone.  I've been trying to walk to build up my strength, but I'm also still dealing with SOB and fast heartrate.  Walking up stairs takes me quite a while and usually need to do it leaning forward and using my hands to help and I often need to stop and rest partway up. 

I'm still dealing with fatigue and take a nap in the afternoons.  Yesterday, I felt fairly decent in the morning so my husband and I decided to take our two ill mannered pups to the beach.  This was my first real outing since tx ended except for a couple of short trips to the store.  It's not my dogs' fault that they aren't trained.  They are only 9 months old and I've been dealing with cancer and treatment and side effects nearly since we got them 7 months ago, so I haven't been able to do much with them.  Now they are 80 lbs. of pure muscle and no manners.  Neither is really easier to handle on leash than the other, so in addition to the nearly hour long ride to the beach, and the walk from the parking lot, down a bunch of stairs with a dog that weighs 8 lbs. less than me, trying to pull me at his pace has completely worn me out.  Today, every muscle in my body hurts like a major Fibromyalgia flare and I'm fairly certain that it's from being so sedentary.  I still can't feel my fingertips because of the leash digging into my wrist and hand.  I actually broke down and took an oxycodone to help with my hip pain this morning.

I'm kind of bummed that I haven't recovered from tx as quickly as I expected, that I keep coming up with new side effects or dealing with some that I've had since the middle of treatment.  My husband is also getting impatient that I haven't bounced back.   

One last question:  Has anyone tried to drink alcohol since treatment ended?  It's summer and I'd love to be able to have a cocktail or some beer, but I'm afraid of how that might effect my bowels.  

Thanks!  ~~~Wis

 

mp327

Wis

I'm sorry to hear of your hip pain.  I have experienced that too, however, mine was not as soon after treatment as yours.  It seems that mine took 5-6 years to come on.  It's mainly on my left side.  I have trouble lying on that side for very long--it gets quite uncomfortable.  This is my theory though.  I am very small like you are--I weigh 95 pounds.  I think neither of us has enough tissue/muscle mass to protect our hips.  Of course, the radiation has not helped.  My pain is not really joint pain, as I still run and walk for exercise.  It's more bone pain, which is noticeable at night when I lie on the left side.  I always wake up in the mornings with great stiffness and pain.  I do have osteoporosis, as per DEXA scans, and I don't know if this has anything to do with the pain or not.  I, too, suffer from malnutrition, due to malabsorption syndrome (my body does not absorb nutrients as it should).  As for your fatigue, I would say that is quite common at only 2 months out.  It took me several months to overcome that after I finished treatment.  As for the pain, I am taking Tylenol 2-3 times per day.  I got a lot of relief from Advil, but had to stop taking it due to my chronic kidney disease.  Tylenol is marginally helpful in pain relief.

As for using alcohol post-treatment, I have done that plenty of times.  I used to be a big tequila drinker, but now stick to mostly wine and clear alcohol, such as vodka.  I had 2 glasses of white wine this evening.  I think over doing it is not good, but I refuse to deny myself simple pleasures.  If you want to try alcohol, I would suggest having a drink at home and seeing how it affects you.  You may tolerate it just fine.

Hang in there, things do eventually get better!

Martha

 

 

Mollymaude

Wis

I think you are about right energy wise for what you've been through. You finished treatment two months ago but after treatment you were hospitalized - from your posts you sounded like you actually felt the worst a couple weeks after treatment. It is just slow. And we want to feel better fast. I know it's frustrating, but look back at some of your old posts and realize you have made significant progress. 

As for alcohol I held off for quite awhile first because I was still on narcotics and then because it made my diarrhea worse. Probably 8-9 months after treatment I found I could drink a beer or margarita with no problems. 

As for the hip pain mine started really pretty soon after treatment like you. All the muscles that attach to your pelvis bones start shortening and scarring. For me the worst thing was sitting cross legged or putting my ankle on opposite knee. I went to PT and the stretches I was shown really helped- and I still do them. If I dig in the garden or weed my butt still gets really sore but I stretch and it's so much better. The sooner you start stretching the better. 

Wisteria83

mp327 said:

Wis

I'm sorry to hear of your hip pain.  I have experienced that too, however, mine was not as soon after treatment as yours.  It seems that mine took 5-6 years to come on.  It's mainly on my left side.  I have trouble lying on that side for very long--it gets quite uncomfortable.  This is my theory though.  I am very small like you are--I weigh 95 pounds.  I think neither of us has enough tissue/muscle mass to protect our hips.  Of course, the radiation has not helped.  My pain is not really joint pain, as I still run and walk for exercise.  It's more bone pain, which is noticeable at night when I lie on the left side.  I always wake up in the mornings with great stiffness and pain.  I do have osteoporosis, as per DEXA scans, and I don't know if this has anything to do with the pain or not.  I, too, suffer from malnutrition, due to malabsorption syndrome (my body does not absorb nutrients as it should).  As for your fatigue, I would say that is quite common at only 2 months out.  It took me several months to overcome that after I finished treatment.  As for the pain, I am taking Tylenol 2-3 times per day.  I got a lot of relief from Advil, but had to stop taking it due to my chronic kidney disease.  Tylenol is marginally helpful in pain relief.

As for using alcohol post-treatment, I have done that plenty of times.  I used to be a big tequila drinker, but now stick to mostly wine and clear alcohol, such as vodka.  I had 2 glasses of white wine this evening.  I think over doing it is not good, but I refuse to deny myself simple pleasures.  If you want to try alcohol, I would suggest having a drink at home and seeing how it affects you.  You may tolerate it just fine.

Hang in there, things do eventually get better!

Martha

 

 

DEXA scan

Hi Martha

My sister mentioned the DEXA scan to me.  I've never had one.  I don't know when it's appropriate to have one.  I wouldn't doubt that I have some bone loss since my hysterectomy some 15 years ago.  I never took HRT, Calcium or Vit. D.  Is there a particular time to have this done?

Is your malabsorption syndrome due to radiation?  How did you learn that you had it?

My left side is also worse than my right side...possibly because that's my weaker side.  But also because the first time I had a cervical fusion, the surgeon took bone from my left hip to graft into my neck and I have a good sized divot there now.

I could definitely enjoy a cocktail on the deck with my husband.  It might make me feel more normal.  It also might knock me out because it's been so long, but that's ok.  I'll for sure try it at home before attempting it away from home.

 

Wisteria83

Mollymaude said:

Wis

I think you are about right energy wise for what you've been through. You finished treatment two months ago but after treatment you were hospitalized - from your posts you sounded like you actually felt the worst a couple weeks after treatment. It is just slow. And we want to feel better fast. I know it's frustrating, but look back at some of your old posts and realize you have made significant progress. 

As for alcohol I held off for quite awhile first because I was still on narcotics and then because it made my diarrhea worse. Probably 8-9 months after treatment I found I could drink a beer or margarita with no problems. 

As for the hip pain mine started really pretty soon after treatment like you. All the muscles that attach to your pelvis bones start shortening and scarring. For me the worst thing was sitting cross legged or putting my ankle on opposite knee. I went to PT and the stretches I was shown really helped- and I still do them. If I dig in the garden or weed my butt still gets really sore but I stretch and it's so much better. The sooner you start stretching the better. 

Stretching

Stretching hurts!!  I've tried it a few times...not consistently though.  I used to be flexible, but everything has siezed up.  I guess I need to bite the bullet and just do it, because it's not getting better by doing nothing.

Yes, you are right...looking back, I have come a long way.  It just doesn't feel like it on a daily basis.  Every day is different though.  I never know how I'm going to feel from one day to the next, sometimes from morning to afternoon!  It's difficult to make plans to do anything because of this.  I was supposed to go blueberry picking with my neighbor and I blew her off three different times for three different reasons!  I feel bad about that, but I just couldn't force myself to go, because of guilt.  I'm lucky she's very understanding.

TraceyUSA

Yoga

worked for me.  I developed soreness and inflexability not long after treatment like you.  I started a weekly yoga class probably a month post treatment and it had helped tremendously. Only go as far as you body will let you, it may take you a while to regain the flexibility you had before.

As for alcohol, I enjoy my red wine once a week.  It's my Friday night treat.  I lost my taste for my pre-treatment drink of choice (vanilla vodka) and did not get it back (too bad becuase there's a lot under my bar.) 

mp327

Wisteria83 said:

DEXA scan

Hi Martha

My sister mentioned the DEXA scan to me.  I've never had one.  I don't know when it's appropriate to have one.  I wouldn't doubt that I have some bone loss since my hysterectomy some 15 years ago.  I never took HRT, Calcium or Vit. D.  Is there a particular time to have this done?

Is your malabsorption syndrome due to radiation?  How did you learn that you had it?

My left side is also worse than my right side...possibly because that's my weaker side.  But also because the first time I had a cervical fusion, the surgeon took bone from my left hip to graft into my neck and I have a good sized divot there now.

I could definitely enjoy a cocktail on the deck with my husband.  It might make me feel more normal.  It also might knock me out because it's been so long, but that's ok.  I'll for sure try it at home before attempting it away from home.

 

Wis

As you know, any of us who had not gone through menopause by the time we had treatment were thrown into it at that time.  So, I think any and all women who have had pelvic radiation should be getting DEXA scans, regardless of age, after treatment is completed.  I am actually surprised that that recommendation isn't included in the NCCN guidelines as part of follow-up, but I guess they are just focused on the cancer.  Perhaps DEXA scans are mentioned--I haven't checked the latest revision.  The first DEXA will be a baseline to determine bone density and the need for any type of bisphosphonate medication, such as Forteo, Fosamax, Prolia, etc.  You mention having bone taken from your left hip for grafting, so I would be really wanting to know the condition of your bones after that and radiation.

As for the malabsorption, it's thought to be caused by the radiation.  It's actually pretty common in people who have had radiation to their abdomen or pelvic region.  The radiation damages the intestinal lining, which is where nutrients from food are absorbed.  It also prevents fat from being absorbed, which is why I can consume 2 baskets of chips at my favorite Mexican restaurant without typically gaining an ounce (however, that many chips makes for some messy times in the bathroom because the fat in them just goes right through me like a bullet train).  My medical oncologist referred me to a gastroenterologist for evaluation because my weight never bounced back after treatment.  He thought malabsorption was the culprit.  Other telltale signs can be unhealthy fingernails, hair loss, greasy and/or pale stools.

I have pasted in a couple of links for you that may have some information that will further answer your questions.

http://www.webmd.com/osteoporosis/features/bone-density-clue-to-your-future#1

http://www.healthline.com/health/malabsorption#overview1

As for alcohol, my dearly departed medical oncologist told me when I asked if alcohol was off limits that he didn't put me through all of that just to be miserable and gave me his blessing to have a margarita now and then.  As I said earlier, I would try it at home first and see how it goes.  If you used hard liquor, you might go on the light side with it until you see how your insides react.

Mollymaude

Stretching

Yes it does feel uncomfortable to stretch but don't stretch to the point of pain. I was so stiff and inflexible when I started it was almost comical. Like just getting into the stretch position was the stretch. Or I would only be able to move the stretch a tiny amount. When you get more energy back maybe you can ask for a physical therapy referral so a therapist can show you some of the gentle stretches. Try to be patient with yourself and recovery. The fatigue was really bad for a long time, I remember feeling SO tired it was like I couldn't get through the day. But it does get better gradually.

Wisteria83

mp327 said:

Wis

As you know, any of us who had not gone through menopause by the time we had treatment were thrown into it at that time.  So, I think any and all women who have had pelvic radiation should be getting DEXA scans, regardless of age, after treatment is completed.  I am actually surprised that that recommendation isn't included in the NCCN guidelines as part of follow-up, but I guess they are just focused on the cancer.  Perhaps DEXA scans are mentioned--I haven't checked the latest revision.  The first DEXA will be a baseline to determine bone density and the need for any type of bisphosphonate medication, such as Forteo, Fosamax, Prolia, etc.  You mention having bone taken from your left hip for grafting, so I would be really wanting to know the condition of your bones after that and radiation.

As for the malabsorption, it's thought to be caused by the radiation.  It's actually pretty common in people who have had radiation to their abdomen or pelvic region.  The radiation damages the intestinal lining, which is where nutrients from food are absorbed.  It also prevents fat from being absorbed, which is why I can consume 2 baskets of chips at my favorite Mexican restaurant without typically gaining an ounce (however, that many chips makes for some messy times in the bathroom because the fat in them just goes right through me like a bullet train).  My medical oncologist referred me to a gastroenterologist for evaluation because my weight never bounced back after treatment.  He thought malabsorption was the culprit.  Other telltale signs can be unhealthy fingernails, hair loss, greasy and/or pale stools.

I have pasted in a couple of links for you that may have some information that will further answer your questions.

http://www.webmd.com/osteoporosis/features/bone-density-clue-to-your-future#1

http://www.healthline.com/health/malabsorption#overview1

As for alcohol, my dearly departed medical oncologist told me when I asked if alcohol was off limits that he didn't put me through all of that just to be miserable and gave me his blessing to have a margarita now and then.  As I said earlier, I would try it at home first and see how it goes.  If you used hard liquor, you might go on the light side with it until you see how your insides react.

Links

Martha, thanks for those links.  They were informative and helped me understand both issues more clearly.  I have an appointment with my PCP next month too, so I can talk to her about scheduling a scan and possibly checking for malabsorption syndrome as well.  I haven't been able to hit 90 lbs. yet post tx no matter what I eat.

Sadly, my experiment with fruit smoothies didn't work out.  I started making them with fresh fruit, yogurt, almond milk and. protein powder, hoping to gain some nutrition and calories.  Fresh fruit doesn't agree with me right now...causes diarrhea.  So I've switched it up to include ice cream, one banana, protein powder and 1/2 & 1/2.  More calories, but I miss my fruit and it's summer now!!!  Maybe I should add some vodka to my next one!! Haha!!

Wisteria83

TraceyUSA said:

Yoga

worked for me.  I developed soreness and inflexability not long after treatment like you.  I started a weekly yoga class probably a month post treatment and it had helped tremendously. Only go as far as you body will let you, it may take you a while to regain the flexibility you had before.

As for alcohol, I enjoy my red wine once a week.  It's my Friday night treat.  I lost my taste for my pre-treatment drink of choice (vanilla vodka) and did not get it back (too bad becuase there's a lot under my bar.) 

Yoga

Thanks Tracey,

I live in the middle of nowhere, so the nearest yoga classes are about 45 minutes away.  I bet I can find some beginner things on YouTube, though!  Thanks for the idea!

You can ship your vodka to me...to add to my smoothies!

Wisteria83

Stretching

Mollymaude,

Just rolling over in bed is a workout, because even just doing that hurts!  I do need to be more patient with myself.  I've been out of treatment now for longer than I was in it, but I always forget that the radiation is still doing it's thing and time is what I need.

Paying medical bills monthly has eaten up our budget, so I don't want to add more bills to the pile unless it's unavoidable.  Maybe YouTube will have some good gentle stretching exercises in addition to the yoga that Tracey suggested.

mp327

Wisteria83 said:

Links

Martha, thanks for those links.  They were informative and helped me understand both issues more clearly.  I have an appointment with my PCP next month too, so I can talk to her about scheduling a scan and possibly checking for malabsorption syndrome as well.  I haven't been able to hit 90 lbs. yet post tx no matter what I eat.

Sadly, my experiment with fruit smoothies didn't work out.  I started making them with fresh fruit, yogurt, almond milk and. protein powder, hoping to gain some nutrition and calories.  Fresh fruit doesn't agree with me right now...causes diarrhea.  So I've switched it up to include ice cream, one banana, protein powder and 1/2 & 1/2.  More calories, but I miss my fruit and it's summer now!!!  Maybe I should add some vodka to my next one!! Haha!!

Wis

You are welcome--I'm glad the links gave you some good information.  I have trouble with fresh fruit and veggies--not all the time, but it can happen at any time.  I still cook a lot of fruit in the microwave, such as peaches, apples and pears, with a sprinkle of cinnamon.  I rarely have issues if I cook the fruit. 

If you are now adding more fat into your diet, that should help with gaining some weight.  However, if you don't gain weight and notice your stools becoming greasy, pale in color, and they float, that could be a sign of malabsorption syndrome, especially fats.  One more reason I always look before I flush!  lol!!  And try that splash of vodka!    My favorite is Grey Goose Citron! 

jajmom

January 2017 Diagnosis

Hi Wisteria

My hip pain started almost immediately after my treatment stopped. In the beginning I could not even lift my leg to put my foot through my underwear! I wondered as well if the pain pain was caused by my lack of exercise during treatment and recovery or from the treatment itself. I still am not certain. I also have lower back pain and overall body stiffness. I am 53 yaers old and I resemble a 99 year old when I get up from sitting or riding in a car. I have had some improvement with the hip pain in the last month but I am crediting that to me being more active as I regain some of my energy. I also credit the body aches and pains to the same! But, instead of exercise eventaully making me less apt to be stiff and sore (in better shape) it seems to cause it. Overnight rest usually alleviates the distress. I so miss my Zumba class, I just feel there is no way I could even try to go back. Between the stiffness, fatigue and bowel urgency I am just too intimidated to try 

I too need my afternoon nap. It is almost impossible to keep my eyes open after lunch, even after sleeping for 8 hours each night. It took a while after treatment ended to even feel as though I could handle an alchoholic drink. I have since then enjoyed both wine and beer. I would say that its gasto-intestinal effect was no worse than what I usually contend with. I do not, however, partake as frequently or as much as I would have in the past.

I am also a little frustrated at the slow recovery. After effects were not discussed at all by my radiologist and oncologist. I guess their thinking is just to get us throught the matter at hand. I did have a follow up CT scan and was scoped by my surgeon. I am happy to say that the tumor was gone and lymph nodes were no longer evident. I will be examined by my surgeon every 3 months for the next 2 years.

I wish you well in your recovery and prognosis. It is always nice to be able to share and sometimes commiserate with those who are in similar situations. I am deeply saddened as I was writing this... my dear friend just called to tell me that a mass she had removed from her rectum was found to be malignant. You almost expect and wish that by going through this ordeal yourself your friends and family might be spared, unfortunately I have just found this to be untrue....  I hate this damned disease.

 

xxsarahxx

I actually was just in with

I actually was just in with my new oncologist today with this same complaint.  My hip pain started after treatment. I am young (39 at diagnosis) and am fit and very flexible, so this pain was not normal and completely out of the ordinary for me. I brought it up several times with my oncologist, radiation oncologist and surgeon, but it was never received with very much enthusiasm.  That is, they said they didn't think it was related to my cancer or cancer treatment because it was outside the field of radiation.  We recently moved several states away from where I was treated and I had my first follow up with my new oncologist at Michigan just this afternoon.  After evaluation, he is thinking it may be bursitis and indicated that he had seen this before after pelvic radiation.  He also ordered hip xrays, stating that there was another rarer condition that he wanted to rule out (that he has also seen occur).  Unfortunately, I don't remember what he said the other condition was!

So, may be something to investigate.  If it's out of the ordinary for you, it's completely possible that it really is something.  It's really is such a **** disease because there are so many side effects from the radiation, that it's hard to know what is what and when to press on your doctors and when to know it's just something that you may have to manage long term.

I will say, though, that while I do think my original team was very good, I am, after today, actually really glad that I was forced to see new doctors and, as a result, get a second opinion on some of these things I've been dealing with post-treatment as I'm feeling like they are bringing some new ideas to the table.

Just some ideas!  I'll try to update in a few weeks after I go back for my follow up!

 

 

 

Wisteria83

jajmom said:

January 2017 Diagnosis

Hi Wisteria

My hip pain started almost immediately after my treatment stopped. In the beginning I could not even lift my leg to put my foot through my underwear! I wondered as well if the pain pain was caused by my lack of exercise during treatment and recovery or from the treatment itself. I still am not certain. I also have lower back pain and overall body stiffness. I am 53 yaers old and I resemble a 99 year old when I get up from sitting or riding in a car. I have had some improvement with the hip pain in the last month but I am crediting that to me being more active as I regain some of my energy. I also credit the body aches and pains to the same! But, instead of exercise eventaully making me less apt to be stiff and sore (in better shape) it seems to cause it. Overnight rest usually alleviates the distress. I so miss my Zumba class, I just feel there is no way I could even try to go back. Between the stiffness, fatigue and bowel urgency I am just too intimidated to try 

I too need my afternoon nap. It is almost impossible to keep my eyes open after lunch, even after sleeping for 8 hours each night. It took a while after treatment ended to even feel as though I could handle an alchoholic drink. I have since then enjoyed both wine and beer. I would say that its gasto-intestinal effect was no worse than what I usually contend with. I do not, however, partake as frequently or as much as I would have in the past.

I am also a little frustrated at the slow recovery. After effects were not discussed at all by my radiologist and oncologist. I guess their thinking is just to get us throught the matter at hand. I did have a follow up CT scan and was scoped by my surgeon. I am happy to say that the tumor was gone and lymph nodes were no longer evident. I will be examined by my surgeon every 3 months for the next 2 years.

I wish you well in your recovery and prognosis. It is always nice to be able to share and sometimes commiserate with those who are in similar situations. I am deeply saddened as I was writing this... my dear friend just called to tell me that a mass she had removed from her rectum was found to be malignant. You almost expect and wish that by going through this ordeal yourself your friends and family might be spared, unfortunately I have just found this to be untrue....  I hate this damned disease.

 

PAIN PAIN PAIN

jajmom,

Turns out that I was just going to write a post about this...and an update.  The pain in my hips, in my opinion is from the radiation.  No one can convince me otherwise.  I didn't have it, and now I do.  The back ache is a whole different story....to be continued in my next post.

At my last visit with my rad onc, my Dr. gave me a two page list of late stage side effects.  Hip pain was on the list.  I just didn't expect it so quickly after treatment ended.  I have appointments next month with both oncologists and I'll raise the issue then.  I don't know if it's coming from the bone or ligaments or tendons...I know the muscles are extremely tight and I'm no where near as flexible as I once was.  I have Fibromyalgia, so the regular joint and muscle aches and pains are something that I'm used to.  This is not that.

I've very sorry to hear about your friend.  This damned disease is the worst.  It's not something you would wish upon your worst enemy, and you want to hope that it spares your loved ones.  There's no predicting who it's going to touch, and no bargains you can make.  As for napping...I'm a firm believer that naps are beneficial to healing.  If you sleep 8 hours a night and still need a nap?  Guess what?  You must have needed it!  That's straight from my rad onc's mouth.

Best of luck to your healing.  I know about the stiffness, fatigue and bowel urgency,  I can totally relate.  The only place I go anymore is to the dr.  More about that in my next. post.

Hugs, ~Wis

Wisteria83

xxsarahxx said:

I actually was just in with

I actually was just in with my new oncologist today with this same complaint.  My hip pain started after treatment. I am young (39 at diagnosis) and am fit and very flexible, so this pain was not normal and completely out of the ordinary for me. I brought it up several times with my oncologist, radiation oncologist and surgeon, but it was never received with very much enthusiasm.  That is, they said they didn't think it was related to my cancer or cancer treatment because it was outside the field of radiation.  We recently moved several states away from where I was treated and I had my first follow up with my new oncologist at Michigan just this afternoon.  After evaluation, he is thinking it may be bursitis and indicated that he had seen this before after pelvic radiation.  He also ordered hip xrays, stating that there was another rarer condition that he wanted to rule out (that he has also seen occur).  Unfortunately, I don't remember what he said the other condition was!

So, may be something to investigate.  If it's out of the ordinary for you, it's completely possible that it really is something.  It's really is such a **** disease because there are so many side effects from the radiation, that it's hard to know what is what and when to press on your doctors and when to know it's just something that you may have to manage long term.

I will say, though, that while I do think my original team was very good, I am, after today, actually really glad that I was forced to see new doctors and, as a result, get a second opinion on some of these things I've been dealing with post-treatment as I'm feeling like they are bringing some new ideas to the table.

Just some ideas!  I'll try to update in a few weeks after I go back for my follow up!

 

 

 

xxsarahxx

I'm so glad that you are able to get other opinions.  It does seem like once their job is done with you, some oncologists pat you on the head and pass you on to whoever's next in line for your care, and maybe they just don't know what comes after treatment.  I'd like to give them the benefit of the doubt, but sometimes you just can't.  

Also,  I think it's pretty amazing that you broke the site's filter because you were actually able to write a cuss word without it being filled up with ****!  Congrats!

I'm keeping paws crossed that your hip x-rays show negative for whatever that rarer condition is.

xxsarahxx

Wisteria83 said:

xxsarahxx

I'm so glad that you are able to get other opinions.  It does seem like once their job is done with you, some oncologists pat you on the head and pass you on to whoever's next in line for your care, and maybe they just don't know what comes after treatment.  I'd like to give them the benefit of the doubt, but sometimes you just can't.  

Also,  I think it's pretty amazing that you broke the site's filter because you were actually able to write a cuss word without it being filled up with ****!  Congrats!

I'm keeping paws crossed that your hip x-rays show negative for whatever that rarer condition is.

lol!  i didn't even realize I

lol!  i didn't even realize I was swearing!  oh well, i stand behind my characterization!  let's be honest, i think we should call a spade a spade and refer to anal cancer as it is!  it is a *&!% disease.  literally and figuratively.

Wisteria83

xxsarahxx said:

lol!  i didn't even realize I

lol!  i didn't even realize I was swearing!  oh well, i stand behind my characterization!  let's be honest, i think we should call a spade a spade and refer to anal cancer as it is!  it is a *&!% disease.  literally and figuratively.

lol xxsarahxx lol

I agree wholeheartedly with your assessment of this disease!  Literally and figuratively!  I'm glad you were able to inject some levity here...I feel like all I've done since I joined this site is to complain constantly.  I know others have the same complaints and others have had it harder than me.  I'm going to try to come up with one positive thing a day to feel gratitude for.  Today's dose is this:  I'm grateful for everyone here at this site who offer up their thoughts and prayers to others while still feeling **** themselves.  There.  I said it too.  Let's see if I can break the filter too!

scmomof3

Hi -- regarding pelvic pain -

Hi -- regarding pelvic pain -- another possibility is that the sacroiliac joint in the pelvis is being pulled by the stiffer tissue from the radiation.  I'm not sure where your pain is, but mine is directly in the bone at the bottom of my bum.  It radiates into my left femur.  My chiropractor has actually fixed it several times on his table, but it won't hold.  Another therapist who works on my lymphedema arm (from breast cancer years ago) has been able to help with the tissue that is pulling from the anal sphincter to the pelvis.  

Generally oncologists, etc., do not have many tricks in their bags when it comes to quality of life after tx.  After my breast cancer, I found the following therapists, who greatly improved my QOL:  medical massage therapist, Chikly method lymphatic massage therapist and a good chiropractor.  Of course, all of this takes money.  My therapies are covered at 50% by my admittedly good private insurance.

SCMomof3