Pain in hips. buttocks, legs and groin area after radiation and chemo for anal/ rectal cancer

Hello,  I am new here and not sure how this all works,  but here goes.  I am a  rectal cancer survival of 1 yr.  I have consistently experienced pain in my hips, buttocks, legs and groin area. Some days are worst than other but I hurt everyday. I get very stiff when I sit for periods of time and it hurts if I stand for too long as well.  My bottom hurts in my rectal area often.  I know that there is no tumor there anymore as I was awake when my last sidmoidoscopy was done and saw the area for myself.  

 

I thought that by now some of the side effects would be gone.  I read a post earlier that said that it would never get better.  I truly hope that this is not true.  I try to exercise but the area where the tumor was is still sensitive.  Anyone going through this or have any suggestions or information?  

 

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Comments

  • EvelynB
    EvelynB Member Posts: 72
    Same here

    I am glad you found this message board. The people here are so helpful and it helps to know that others truly understand what you are going through. Although I am only 3 months out from end of treatment, I am experiencing the same. I have seen alot of people post on here that also have those same symptoms. I am slowly getting back to yoga which I have heard can help with the stifness. Also, some people have physical therapy and that seems to help as well. As for the painful bottom, I too hope that will get better. Some say it does and some say it doesn't. I guess it depends on the person.  

  • mp327
    mp327 Member Posts: 4,440 Member
    EvelynB said:

    Same here

    I am glad you found this message board. The people here are so helpful and it helps to know that others truly understand what you are going through. Although I am only 3 months out from end of treatment, I am experiencing the same. I have seen alot of people post on here that also have those same symptoms. I am slowly getting back to yoga which I have heard can help with the stifness. Also, some people have physical therapy and that seems to help as well. As for the painful bottom, I too hope that will get better. Some say it does and some say it doesn't. I guess it depends on the person.  

    Pain

    Pain and stiffness in the hips is a very common thing after this treatment.  I am 7 years out from treatment and I have lost a lot of flexibility and often have pain.  Exercise helps and also not sitting for long periods of time.

    Martha 

  • IAmYusufSidi
    IAmYusufSidi Member Posts: 12
    Get the best care after anal/rectal cancer treatment

     

    Cancer and its treatment regularly cause reactions. Notwithstanding treatment to moderate, stop, or wipe out the cancer, an essential piece of cancer care is calming a man's symptoms and reactions. This methodology is called palliative or strong care, and it incorporates supporting the patient with his or her physical, enthusiastic, and social needs.

     

    Palliative care is any treatment that spotlights on lessening side effects, enhancing personal satisfaction, and supporting patients and their families. Any individual, paying little mind to age or sort and phase of tumor, may get palliative care. It works best when palliative care is begun as ahead of schedule as required in the cancer treatment process. Individuals frequently get treatment for the disease and treatment to simplicity symptoms in the meantime. Truth be told, patients who get both frequently have less extreme manifestations, better personal satisfaction, and report they are more fulfilled by treatment.

     

    Palliative medicines shift broadly and regularly incorporate prescription, wholesome changes, unwinding procedures, passionate backing, and different treatments. You might likewise get palliative medicines like those intended to take out the growth, for example, chemotherapy, surgery, or radiation treatment. Converse with your specialist about the objectives of every treatment in your treatment arrangement.

     

    Before treatment starts, talk with your social insurance group about the conceivable reactions of your particular treatment arrangement and palliative care choices. Also, amid and after treatment, make certain to tell your specialist or another medicinal services colleague on the off chance that you are encountering an issue so it can be tended to as fast as could be allowed.

     

    Palliative care concentrates on anticipating, overseeing, and soothing the side effects of disease and the reactions of growth treatment. It additionally gives complete backing to individuals living with growth and their family, companions, and guardians. Anybody, paying little respect to age or sort and phase of growth may get palliative care some time recently, after, and amid treatment. Discussing palliative care not long after a growth conclusion assists patients with bettering comprehend their guess and objectives of treatment, illuminate their desires, and keep up their personal satisfaction.

     

    Understanding palliative care

     

    Palliative care is any treatment that spotlights on averting and dealing with the manifestations of tumor and reactions of treatment. It likewise gives extensive backing to individuals living with cancer and their families. Any individual, paying little heed to age or sort and phase of tumor, may get palliative care.

     

    Individuals ought to get treatment for the growth and treatment to straightforwardness reactions in the meantime. At the point when symptoms and different difficulties of treatment are all around oversaw, individuals have better personal satisfaction and report they are more fulfilled by treatment.

     

    Palliative medicines regularly incorporate prescription, nutritious changes, unwinding methods, otherworldly bolster, enthusiastic backing, and different treatments. You might likewise get palliative medications like those used to kill the tumor, for example, chemotherapy, surgery, or radiation treatment. For instance, when radiation treatment assists control with tormenting, it is viewed as a palliative treatment. That is the reason it is critical to comprehend the objectives of every treatment in your care arrangement.

     

    Kids with growth ought to likewise get palliative care. Folks more often than not work with the human services group to oversee side effects so their kids are as agreeable as would be prudent beginning from finding. Relatives, including kin, may get guiding as a component of palliative care to better adapt to the youngster's finding.

     

    Objectives of palliative care

     

    The objectives of palliative care include:

     

    Treating side effects, including agony, queasiness, windedness, a sleeping disorder, and other physical issues brought about by tumor or its treatment

     

    Overseeing enthusiastic and social needs, including uneasiness, wretchedness, and relationship issues

     

    Tending to profound needs or concerns

     

    Tending to handy needs, for example, transportation and budgetary concerns

     

    Giving backing to family, companions, and guardians

     

    Distinction between palliative care and hospice care

     

    In spite of the fact that you may listen "palliative care" and "hospice care" utilized as a part of comparative ways, they are not the same. Palliative care is given at each progression of the treatment process. It gives an additional layer of backing for individuals with any phase of cancer. Hospice care is a particular kind of palliative care. It is just furnished to individuals with disease why should expected live six months or less.

     

    In the event that you have propelled cancer, your specialist may recommend medications to enhance side effects or medicines coordinated at the tumor. In the event that you decide to stop infection coordinated treatment, this does not mean you have quit "battling" the sickness. It likewise does not mean your human services group has surrendered. Rather, the emphasis may be on assuaging difficult indications and taking into care extra backing in all aspects of your life.

     

    At the point when a man chooses to start hospice mind, an individual from the palliative care group assists with the move. He or she can likewise help address the physical and intense subject matters that accompany that decision. Take in more about hospice care.

     

    At the point when and where palliative care is given

     

    In a perfect world, palliative care ought to begin at conclusion. It ought to then proceed all through all phases of the malady.

     

    You may get palliative care in a specialist's office, clinic, disease focus, long haul care office, or you're home. The area relies on upon the medicines that have been prescribed and the accessible assets. Talk with your specialist, medical caretaker, or oncology social laborer about your alternatives.

     

    The palliative care group

     

    Various individuals may make up your palliative care group, including:

     

    Oncologist. An oncologist is a specialist who has practical experience in treating cancer. More often than not, your oncologist will serve as the pioneer of your social insurance group. He or she is responsible for planning your treatment plan and settling taking drugs and dosing. Your oncologist may counsel with other social insurance experts, for example, a palliative pharmaceutical doctor or agony authority, to make your palliative care arrangement.

     

    Palliative solution doctor. This is a specialist who has some expertise in hospice and palliative care. He or she lives up to expectations with the medicinal services group to diminish indications and reactions. A palliative prescription doctor will likewise converse with patients to adjust treatment to his or her objectives and qualities.

     

    Attendants. The medical caretakers on your group assist make do with tormenting and different side effects. They likewise go about as the principle contact for whatever remains of your medicinal services group. On the off chance that you get palliative care at home, medical attendants may visit you consistently to guarantee you get the care you require.

     

    Social specialists. A social laborer gives directing to you and your family and organizes family gatherings. A social specialist might likewise help with down to earth issues like transportation and can interface you with nearby assets. Social specialists likewise help with release from the healing center and finding in-home help, or, if fundamental, hospice care.

     

    Torment authority. Torment pros, or agony prescription specialists, are specialists at discovering the reason for torment and treating it. They may endorse pharmaceutical, prescribe a recovery program, and/or perform torment diminishing systems. An oncologist or palliative drug doctor may have the capacity to control your agony without alluding you to a torment pro.

     

    Cleric. A cleric is typically partnered with a particular religion. He or she is prepared to listen to patients' and relatives' worries, particularly about death and kicking the bucket. Clerics are additionally accessible to talk about other confidence related and profound matters.

     

    Dietitian. A dietitian can help address healthful difficulties, for example, sickness or voracity misfortune. Dietitians might likewise give guidance about nourishing supplements and assist make with specializeding eating arrangements

     

    Physical and word related specialists. A physical specialist aides keep up versatility and enhance how well a man moves. Physical advisors additionally create activity projects to keep up or enhance physical quality amid and after treatment. Word related advisors commonly concentrate on day by day assignments and working, particularly abdominal area development.

     

    Tyke life masters. These prepared experts have some expertise in helping kids and their families comprehend a kid's not kidding ailment. They likewise help kin through the experience.

     

    Volunteers. Numerous palliative care projects have prepared volunteers that visit with patients who need friendship and passionate backing. Volunteers frequently perform basic errands, for example, perusing so everyone can hear or composing notes, or can just sit and talk.

     

    Sadness and deprivation organizer. A pain facilitator directs relatives who are confronting or have endured the passing of a friend or family member. They have specific preparing in social work or brain science. Take in more about despondency and misfortune.

     

    Paying for palliative care

     

    Palliative care is regularly secured by individual medical coverage arranges. Medicaid and Medicare might likewise pay contingent upon the circumstance. A healing facility social specialist can assist you with investigating installment alternatives. Take in more about dealing with the expense of cancer care.

    Discussing palliative care

     

    An essential piece of palliative think is discussing your analysis, treatment, and needs. These discussions help illuminate your objectives and desires. The best palliative care happens when patients and their families cooperate with the social insurance group.

     

    Here are some down to earth tips to assist advance great correspondence with your social insurance group:

     

    Request that the specialist clarify your determination, treatment arrangement, and forecast. Forecast is the shot of recuperation. These may change after some time so keep on having open, genuine exchanges with your specialist. Taking notes or bringing a relative or companion along may assist you with recalling a greater amount of the data.

     

    Ask your medicinal services group to clarify on the off chance that you don't comprehend a clarification, depiction, or new restorative word.

     

    Enlighten the specialists and medical caretakers concerning any agony, uneasiness, or other reactions, regardless of the fact that you feel they are not genuine. Frequently there are numerous alternatives for soothing side effects. Be that as it may, the human services group needs to think about them to assist you with feeling better.

     

    Stay informed regarding your indications and symptoms. Record what they are, the means by which regularly they happen, and how serious they are. This will assist the with doctoring recognize the reason and discover arrangements.

     

    Try not to be hesitant to make inquiries. You may need to record your inquiries before arrangements. It is critical to get some information about your social, enthusiastic, practical, and otherworldly needs, and additionally addresses about your wellbeing. Here is a fundamental rundown of things to ask the specialist to assist you with beginning.

     

     

    Talk with your specialist about the palliative care administrations accessible to you. You may need to request that be alluded to a palliative care authority. Oncologists commonly welcome the backing and data palliative care authorities give.

  • sandysp
    sandysp Member Posts: 868 Member

    I am a very impatient person and at one year I expected to feel a lot better than I did. Where I got that idea, I don't know. It's just that after all we went through to kill the cancer, it seemed like I should feel great when it was proclaimed gone. But I had a lot of pain particularly in my legs, buttocks and hips.

    Chi Gong, Tai Chi, Yoga, like you are doing help a great deal. I now do Bikram hot yoga and it is the best exercise for me and I also tried swimming, aqua robics, zumba, boot camp, you name it. Oh yeah and I walked my dogs. 

    But so much of recovery is about time. It takes time. It took me two years before I started to feel well. Because of some ongoing issues with my scans, the stress of all the checkups, etc, the relationship issues I was suffering for putting myself instead of my marriage or more specifically my spouse first contributed to feeling overwhelmed and probably as a result contributed to the fatigue. Aches and pains for me are worse when I am fatigued.

    The treatment leaves us with higher levels of fatigue for a couple of years.

    So taking this into consideration, do try to do some form of exercise that suits you both for the stress and to aid your recovery. It helps with pain management. Like this genlemen suggested, insist on rehabilitative and/or palliative care. I visited a pelvic physical therapist and since there was considerable fluid build up in my pelvis she helped me take care of Lymphedema which I have to continually moniter and treat. I had cancer in some lymph nodes in both the groin and pelvis. Since this was not the case with yuu, it is unlikely you have this but I would still get it checked out with a good Rehabilitative Medicine specialist.

    Four years later, I am happy to report that my pain issues are no longer significant. So from this survivors standpoint, there is light at the end of the tunnel.

    All the best,

    Sandy

  • Lorikat
    Lorikat Member Posts: 681 Member
    sandysp said:

    I am a very impatient person and at one year I expected to feel a lot better than I did. Where I got that idea, I don't know. It's just that after all we went through to kill the cancer, it seemed like I should feel great when it was proclaimed gone. But I had a lot of pain particularly in my legs, buttocks and hips.

    Chi Gong, Tai Chi, Yoga, like you are doing help a great deal. I now do Bikram hot yoga and it is the best exercise for me and I also tried swimming, aqua robics, zumba, boot camp, you name it. Oh yeah and I walked my dogs. 

    But so much of recovery is about time. It takes time. It took me two years before I started to feel well. Because of some ongoing issues with my scans, the stress of all the checkups, etc, the relationship issues I was suffering for putting myself instead of my marriage or more specifically my spouse first contributed to feeling overwhelmed and probably as a result contributed to the fatigue. Aches and pains for me are worse when I am fatigued.

    The treatment leaves us with higher levels of fatigue for a couple of years.

    So taking this into consideration, do try to do some form of exercise that suits you both for the stress and to aid your recovery. It helps with pain management. Like this genlemen suggested, insist on rehabilitative and/or palliative care. I visited a pelvic physical therapist and since there was considerable fluid build up in my pelvis she helped me take care of Lymphedema which I have to continually moniter and treat. I had cancer in some lymph nodes in both the groin and pelvis. Since this was not the case with yuu, it is unlikely you have this but I would still get it checked out with a good Rehabilitative Medicine specialist.

    Four years later, I am happy to report that my pain issues are no longer significant. So from this survivors standpoint, there is light at the end of the tunnel.

    All the best,

    Sandy

    Sandy!

    I rarely come on here anymore so was really happy to see your post!  Happy you are feeling well!  Lori

  • cbokay
    cbokay Member Posts: 21 Member
    Aches & Pains/Anal Cancer

    I'm new here also and feel very fortunate to have found this site.  I've been reading through the various posts for a couple of days now, and I really enjoy the knowledge and nurturing that is shared here.  The people here are a blessing from God.

    I'm a recent anal cancer survivor, going on two years in December NED, and my oncologist says I'm doing great.  I only see him once every six months and have blood work done for him: tumor markers and whatever. 

    Beginning October 2013 I had the PICC line and chemo pack and 6 weeks radiation and two of chemo.  It took a lot out of me and I would curdle up in the chairs at the cancer center waiting for my turn to be treated.  I remember getting weaker and weaker as each week went by.  But I never realized how horribly drained I was until this year.  I lost last year.  I don't really remember it that much.  I was so weak from the disease and the medicine working in my body.  We all know what that's about, don't we?

    Okay, back on topic:

    My sister went though treatment for anal cancer five years before me and she complained of discomfort in the groin area.  And she, too, believes she will have to live with it the rest of her life. I have a hard time grasping that.  I think I would live in a bath tub with all kinds of natural healing oils, and whatever it takes to soothe the discomfort and get the healing process going.  I would like to believe it's only a temporary inconvenience.  Perhaps I'm being naiive.  Hope not.

    My pain/discomfort is located in the sacram and right hip joint.  But I don't have it every day anymore and the degree of discomfort varies.  I take Aleve if it becomes too annoying.  But you see, I'm kind of a nutt when it comes to self-healing and I have recently been using those copper rubber devices that you can place on various parts of your body.  I swear they work.  I even bought one of those long black rubber contraptions you velcro around your waist that is supposed to help you lose weight while you walk, etc.  Well I didn't buy it for that reason.  I bought it for abdominal and back support.  There is also one that wraps around the calf muscle.  And it works.  It's the pressure that relieves the pain.

    I also use the thinner width copper one you wrap and velcro around you waist to help with losing weight.  I suggest you wrap that around your upper thigh near the groin and see what happens.  I'll bet it will help relieve the pain.  Sometimes I sleep with the one that goes around my calf.  It takes care of horrible cramps in the calf muscle and feet.

    I'm not a health guru but sometimes the simplest methods do the trick (without prescribed meds).

    Many healing blessings to all of us.  Yours in Christ

    CB

  • islandgirlculebra
    islandgirlculebra Member Posts: 155 Member
    Me Too/What Helps

    Three-year survivor (treatment March-April 2012).  Still dealing with hip, buttock, leg pain which started immediately following the radiation.   Diagnosed in April of this year with hip bursitis and four bulging disks in lower back.  Received steroid injection in hip and then went for aquatic physical therapy.  The aquatic therapy has been a God-send. The Physical Therapy company does the therapy at the local Modern Maturtiy Center, in 89 degree water, which consists of stretches, exercises and walking. I joined the Center so I could continue doing the therapy on my own after I was released from the physical therapy. It is not a cure, but as long as I faithfully go 2 - 3 times per week, it provides me with a great deal of relief from the pain.  And doing exercises in warm water is actually fun, easy on your joints, plus I've gotten to know some very nice people and it's enjoyable on a social level. The back specialist didn't think the radiation caused any of this, but I have my doubts since I never had the hip, buttock and leg pain prior to the radiation.

  • lizdeli
    lizdeli Member Posts: 569 Member

    Me Too/What Helps

    Three-year survivor (treatment March-April 2012).  Still dealing with hip, buttock, leg pain which started immediately following the radiation.   Diagnosed in April of this year with hip bursitis and four bulging disks in lower back.  Received steroid injection in hip and then went for aquatic physical therapy.  The aquatic therapy has been a God-send. The Physical Therapy company does the therapy at the local Modern Maturtiy Center, in 89 degree water, which consists of stretches, exercises and walking. I joined the Center so I could continue doing the therapy on my own after I was released from the physical therapy. It is not a cure, but as long as I faithfully go 2 - 3 times per week, it provides me with a great deal of relief from the pain.  And doing exercises in warm water is actually fun, easy on your joints, plus I've gotten to know some very nice people and it's enjoyable on a social level. The back specialist didn't think the radiation caused any of this, but I have my doubts since I never had the hip, buttock and leg pain prior to the radiation.

    Pain after treatment

    I am six years out since my last treatment.  I too experienced the pain in my hips, thighs, groin etc.  I remember having wierd pains in my abdomen also, like mini hernias.  It was weird to say the least.  As I recall, it lasted for a couple of years, subsiding though.  It got much better.  I still have some weakness and pain but nothing like it was.  Yoga and exercise helps.  I failed at yoga lol, but my oncologist said that was the best thing for it.  There are also physical trainers out there that work wtih cancer survivors which may be helpful.  It's a long journey, try to stay optimistic and find what works best for you.

    Wishing you healing,

    Liz

  • TinaAK
    TinaAK Member Posts: 4
    I thought it was just me.

    Wow.  I kept trying to figure out what I had done to get my hips, thighs and butt so sore and stiff.  

     

    Thank you all so much!  I had no idea it was the radiation and chemo.  Maybe this will help me be a little easier on myself.

     

    Going to get back to yoga after reading all the responses, and will probably try the copper things too.

     

    Wow.

  • nonichol
    nonichol Member Posts: 170
    Pain

    I had read hip and groin pain was normal. So, I figured mine was my new normal 18 months after treatment I had a scan and they said my pelvic bone had a small crack (broken) they did a bone scan to make sure it wasn't cancer and I was relieved just a break. It hurt for another year. Not too bad though, I think I am too tough for my own good!!!!! Lol. I do have stiffness in my hips and occasionally cramping. But stretching does help. Even with side effects I am still happy to be here!!! 

    Norma

  • nonichol
    nonichol Member Posts: 170
    cbokay said:

    Aches & Pains/Anal Cancer

    I'm new here also and feel very fortunate to have found this site.  I've been reading through the various posts for a couple of days now, and I really enjoy the knowledge and nurturing that is shared here.  The people here are a blessing from God.

    I'm a recent anal cancer survivor, going on two years in December NED, and my oncologist says I'm doing great.  I only see him once every six months and have blood work done for him: tumor markers and whatever. 

    Beginning October 2013 I had the PICC line and chemo pack and 6 weeks radiation and two of chemo.  It took a lot out of me and I would curdle up in the chairs at the cancer center waiting for my turn to be treated.  I remember getting weaker and weaker as each week went by.  But I never realized how horribly drained I was until this year.  I lost last year.  I don't really remember it that much.  I was so weak from the disease and the medicine working in my body.  We all know what that's about, don't we?

    Okay, back on topic:

    My sister went though treatment for anal cancer five years before me and she complained of discomfort in the groin area.  And she, too, believes she will have to live with it the rest of her life. I have a hard time grasping that.  I think I would live in a bath tub with all kinds of natural healing oils, and whatever it takes to soothe the discomfort and get the healing process going.  I would like to believe it's only a temporary inconvenience.  Perhaps I'm being naiive.  Hope not.

    My pain/discomfort is located in the sacram and right hip joint.  But I don't have it every day anymore and the degree of discomfort varies.  I take Aleve if it becomes too annoying.  But you see, I'm kind of a nutt when it comes to self-healing and I have recently been using those copper rubber devices that you can place on various parts of your body.  I swear they work.  I even bought one of those long black rubber contraptions you velcro around your waist that is supposed to help you lose weight while you walk, etc.  Well I didn't buy it for that reason.  I bought it for abdominal and back support.  There is also one that wraps around the calf muscle.  And it works.  It's the pressure that relieves the pain.

    I also use the thinner width copper one you wrap and velcro around you waist to help with losing weight.  I suggest you wrap that around your upper thigh near the groin and see what happens.  I'll bet it will help relieve the pain.  Sometimes I sleep with the one that goes around my calf.  It takes care of horrible cramps in the calf muscle and feet.

    I'm not a health guru but sometimes the simplest methods do the trick (without prescribed meds).

    Many healing blessings to all of us.  Yours in Christ

    CB

    Cramps

    I take magnesium for cramps in my feet it works. 

  • Stephen2
    Stephen2 Member Posts: 7
    Anal Cancer

    I was diagnosed with anal cancer in late 2013.  For years the dr. told me it was hemorrhoids without even examining the area  I was Stage 2 by the time I was diagnosed.   In short, I was in rehab/nursing home for one year.  Rehab gave up pretty quickly and told me I would be going home in a wheelchair.  For the remaining months they moved me into the nursing home section.  I was put into rehab after falling numerous times and developed drop foot.  I experienced terrible pain in my numb legs, feet, and ankles. I am not diabetic.  Diagnosed with neuropathy.  Suffering pins and needles and painful tingling in my numb legs and feet.  Still being treated with garbepentin, cymbalta, and other meds. The pain is less severe now but I am afraid I will be in a wheelchair the rest of my life.  I often wonder if it had been diagnosed as stage 0 or stage 1 if I would have needed so much radiation.  I am thankful for what I have, family and friends.  I hope that someday a cure will be found for neuropathy.  Sites like this one are enormously helpful so please keep on writing and, if you experience bleeding from the rectal area as I did, please, please see a cancer specialist. 

  • sephie
    sephie Member Posts: 650 Member
    Stephen2 said:

    Anal Cancer

    I was diagnosed with anal cancer in late 2013.  For years the dr. told me it was hemorrhoids without even examining the area  I was Stage 2 by the time I was diagnosed.   In short, I was in rehab/nursing home for one year.  Rehab gave up pretty quickly and told me I would be going home in a wheelchair.  For the remaining months they moved me into the nursing home section.  I was put into rehab after falling numerous times and developed drop foot.  I experienced terrible pain in my numb legs, feet, and ankles. I am not diabetic.  Diagnosed with neuropathy.  Suffering pins and needles and painful tingling in my numb legs and feet.  Still being treated with garbepentin, cymbalta, and other meds. The pain is less severe now but I am afraid I will be in a wheelchair the rest of my life.  I often wonder if it had been diagnosed as stage 0 or stage 1 if I would have needed so much radiation.  I am thankful for what I have, family and friends.  I hope that someday a cure will be found for neuropathy.  Sites like this one are enormously helpful so please keep on writing and, if you experience bleeding from the rectal area as I did, please, please see a cancer specialist. 

    stephen

    so sorry that you were misdiagnosed..... this seems very common....I , too, was told hemmorroid but i did continue to go to the same proctologist who kept doing Digital rectal exams and saying,,, i see blood but it is not cancer!!!!!  i hurt so badly that after going to him for over a year i finally got a second opinion....he knew what it was...stage 2 no nodes no metastisis..... so i went to MD anderson since it was rare..... i had 27 rounds of radiation and the 5 fu  + mitomycin..... i am 6 years post with No evidence of disease but still have issues with pain and bowel urgency..... how many radiation tx did you have???   we all seem to have different numbers.....i do not have the neuropathy... so sorry that you do..... sephie

  • mp327
    mp327 Member Posts: 4,440 Member
    Stephen2 said:

    Anal Cancer

    I was diagnosed with anal cancer in late 2013.  For years the dr. told me it was hemorrhoids without even examining the area  I was Stage 2 by the time I was diagnosed.   In short, I was in rehab/nursing home for one year.  Rehab gave up pretty quickly and told me I would be going home in a wheelchair.  For the remaining months they moved me into the nursing home section.  I was put into rehab after falling numerous times and developed drop foot.  I experienced terrible pain in my numb legs, feet, and ankles. I am not diabetic.  Diagnosed with neuropathy.  Suffering pins and needles and painful tingling in my numb legs and feet.  Still being treated with garbepentin, cymbalta, and other meds. The pain is less severe now but I am afraid I will be in a wheelchair the rest of my life.  I often wonder if it had been diagnosed as stage 0 or stage 1 if I would have needed so much radiation.  I am thankful for what I have, family and friends.  I hope that someday a cure will be found for neuropathy.  Sites like this one are enormously helpful so please keep on writing and, if you experience bleeding from the rectal area as I did, please, please see a cancer specialist. 

    Hi Stephen2

    I am glad you found this site and I welcome you, although the reasons for any of us being here are not to our liking.  However, I'm glad you find the discussions helpful.  I am sorry for all that you are dealing with.  I have not experienced neuropathy post-treatment, but I know it is not uncommon.  I am glad your pain is now reduced, but sorry you must be in a wheelchair.  I admire your attitude, despite your situation.  I think we all have learned to be more grateful from our experiences with this disease.  Take care and please join in our discussions as you wish!

    Martha

  • sephie
    sephie Member Posts: 650 Member
    Stephen2 said:

    Anal Cancer

    I was diagnosed with anal cancer in late 2013.  For years the dr. told me it was hemorrhoids without even examining the area  I was Stage 2 by the time I was diagnosed.   In short, I was in rehab/nursing home for one year.  Rehab gave up pretty quickly and told me I would be going home in a wheelchair.  For the remaining months they moved me into the nursing home section.  I was put into rehab after falling numerous times and developed drop foot.  I experienced terrible pain in my numb legs, feet, and ankles. I am not diabetic.  Diagnosed with neuropathy.  Suffering pins and needles and painful tingling in my numb legs and feet.  Still being treated with garbepentin, cymbalta, and other meds. The pain is less severe now but I am afraid I will be in a wheelchair the rest of my life.  I often wonder if it had been diagnosed as stage 0 or stage 1 if I would have needed so much radiation.  I am thankful for what I have, family and friends.  I hope that someday a cure will be found for neuropathy.  Sites like this one are enormously helpful so please keep on writing and, if you experience bleeding from the rectal area as I did, please, please see a cancer specialist. 

    stephen 2

    hey stephen.... after -rereading  my post, i reconsidered and you do not need to tell me how many radiation treatments you had.....i am very interested in the medical side of anal cancer tx....but i just want you to feel good where ever you are.... i want you to heal more and more as time goes by.... it took me 3 years of physical therapy to learn to walk again after just a broken knee cap so sometimes it takes a very long time.... could you maybe get another physical therapist that might try again???? i did have a friend who had anal cancer tx and was placed in a nursing home to recouperate after complications.... she is doing better now.... you have wonderful family and friends which is so important....take care and i do hope that the neuropathy can be helped some.......sephie

  • Sherry56
    Sherry56 Member Posts: 2
    Anal cancer

    I had 6 rounds of chemo with 33 rounds of radiation at the same time to the area around that cancer I two experience pain not sure if it gets any better however radiation not only helps for treatment but can also do damage to the whole area done there including bones and back I suggest you see a nuero surgeon to see if it has any damage to the spine .My anal cancer has returned and it has only been 5 months since My treatments was finished now I am facing surgery for permanent colostomy. Chemo is dangerous and I myself have had severe side effects from it some of these side effects never go away would I take chemo again no way .

     

  • mp327
    mp327 Member Posts: 4,440 Member
    Sherry56 said:

    Anal cancer

    I had 6 rounds of chemo with 33 rounds of radiation at the same time to the area around that cancer I two experience pain not sure if it gets any better however radiation not only helps for treatment but can also do damage to the whole area done there including bones and back I suggest you see a nuero surgeon to see if it has any damage to the spine .My anal cancer has returned and it has only been 5 months since My treatments was finished now I am facing surgery for permanent colostomy. Chemo is dangerous and I myself have had severe side effects from it some of these side effects never go away would I take chemo again no way .

     

    Sherry56

    I'm sorry to hear that your cancer returned and that you are now facing surgery with permanent colostomy.  I hope it will go well and that you recover quickly.  Please keep us posted.

    Martha

  • pializ
    pializ Member Posts: 508 Member
    mp327 said:

    Sherry56

    I'm sorry to hear that your cancer returned and that you are now facing surgery with permanent colostomy.  I hope it will go well and that you recover quickly.  Please keep us posted.

    Martha

    Sherry56

    I am sorry to hear of the return of AC. There was a young man from England on this forum and his Mum needed a permanent colostomy after the return of AC. In the 'old' days, it was all they had on offer pre chemo radiotherapy. 

    I hope your surgery and recovery are uneventful & that you let us know how you are doing. 

    Best wishes

    Liz

  • Stephen2
    Stephen2 Member Posts: 7
    sephie said:

    stephen 2

    hey stephen.... after -rereading  my post, i reconsidered and you do not need to tell me how many radiation treatments you had.....i am very interested in the medical side of anal cancer tx....but i just want you to feel good where ever you are.... i want you to heal more and more as time goes by.... it took me 3 years of physical therapy to learn to walk again after just a broken knee cap so sometimes it takes a very long time.... could you maybe get another physical therapist that might try again???? i did have a friend who had anal cancer tx and was placed in a nursing home to recouperate after complications.... she is doing better now.... you have wonderful family and friends which is so important....take care and i do hope that the neuropathy can be helped some.......sephie

    Anal Cancer

    Hi, Sephie  Please, you can ask me anything you like,  I had 7 weeks of radiation, five days a week.  I would have answered sooner but I had trouble finding this site.  Right now I am waiting to hear if I am eligible for an electric wheelchair.  I had a mastectomy many years ago and my arm really starts aching when I wheel myself around.   My neurologist is sending me to a Physiatrist (not Psychiatrist) on Monday.  I am hoping that they can at least give me more comfortable braces for my legs.  I will keep in touch and let you know how this latest round turns out.  Look forward to hearing from you soon.     

  • sephie
    sephie Member Posts: 650 Member
    Stephen2 said:

    Anal Cancer

    Hi, Sephie  Please, you can ask me anything you like,  I had 7 weeks of radiation, five days a week.  I would have answered sooner but I had trouble finding this site.  Right now I am waiting to hear if I am eligible for an electric wheelchair.  I had a mastectomy many years ago and my arm really starts aching when I wheel myself around.   My neurologist is sending me to a Physiatrist (not Psychiatrist) on Monday.  I am hoping that they can at least give me more comfortable braces for my legs.  I will keep in touch and let you know how this latest round turns out.  Look forward to hearing from you soon.     

    stephen2

    you had more radiation than i did.... i find it very interesting ( or disturbing) how different tx is for the same stage ...( if i remember correctly  we were both stage 2 no nodes no metastisis).....this definitely could contribute to your neuropathy..... i do so hope that the physiatrist can help with both your arms and your legs..... thinking great thoughts for you.... thanks...sephie