Incurable prostate cancer ..it spread to hip

tahoemom
tahoemom Member Posts: 1
in Prostate Cancer #1
My husband had his prostate removed. Few months later it spread to his hip.
Had radiation and hormone therapy. He is incurable but treatable.
PSA has been undetectable for almost a year.

My question is, if the PSA is so low , why does he have leg pain 24/7 and needs pain meds everyday. His doctor says it is from the cancer , but it is confusing.

Pain and undetectable cancer ? anyone know why?

Tahoemom

Comments

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #2
    Peripheral Neuropathy symptoms
    Tahoemom

    Welcome to the board.
    I am sorry for the painful condition of your husband. Unfortunately, low PSA does not mean that one is “cancer free”. Some varieties of cancerous cells and aggressive cancers may not produce PSA serum at all, but they are "there" alive.

    I wonder if your husband has done a bone density scan (DEXA). Many PCa patients do not know about their bone health (osteopenia/osteoporosis) and find later that they got weaker bone. This is what cancer “likes” for spreading. Particularly old fellas and the ones on hormonal treatment should be careful with this side effect of HT.

    The apparent metastases in bone may be the cause for the pain in your husband’s leg. Peripheral Neuropathy symptoms may be the "transmitter". Read this;
    http://www.webmd.com/brain/understanding-peripheral-neuropathy-basics

    Treatment to such condition is usually done with focal radiation applied to the cancer spots. However, radiation is avoided in areas previously radiated. I believe that the doctor is doing proper judgement in recommending pain relief drugs. But you could inquire with his radiologist, who has planned the isodose field of his previous RT, on any possibility for further radiation.

    There are also drugs that attack directly the cancer in bone. The most famous for its success is Alpharadin (radium-223 chloride) which you can avail on clinical trials. These trials are great opportunities for getting a relief from the cancer spread and from pain. Discuss the matter with his doctor or inquire directly in this link;
    http://clinicaltrials.gov/ct2/show/NCT01516762?term=radium-223+chloride&rank=4

    Other drugs that help in pain management in cases of metastases to bone are bisphosphonates taken for osteoporosis such as Alendronate in pills (Fosamax) and Zometa (intravenous), or the newer drug Xgeva which is a human monoclonal antibody for the treatment of osteoporosis. Zometa and Xgeva can cause Osteonecrosis of the Jaw so that your husband should do all dental repair, if any, before embarking in taking the drugs.
    Please read this info;
    http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/about-bisphosphonates-and-jaw-problems
    http://emedicine.medscape.com/article/1447355-overview

    I hope my post helps in your inquire.

    Wishing your husband luck in his journey.

    VGama
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,346 Member
    #3
    Dear Tahoemom,
    I am sorry to read of your husbands condition.

    As a lay person, my guess is that when the cancer metatisizes to the bones, there can be lesion(s) that interfer with the access that the nerves have, so therewill be referred pain in the legs. Sometimes these lesions can be elimited via various radiation treatments, cyberknife is one that is very precise, and can work in some cases.

    (Of course the pain could be unrelated to cancer, and it may be remotely possible that your husband has spinal stenosis.

    What diagnostic tests did the doctor do that confirms this metasize to the hips? What were the results of these tests?

    It would be helpful to share the details of your husband initial diagnosis, gleason score, number of cores taken and number positive, stage, and any other information that you can think of so you can receive a "best" answer to your question on this Internet site
  • Celticroots2
    Celticroots2 Member Posts: 43
    #4
    Tahoemom
    I would also like to know what tests were done to determine it had spread to his hip. Has he had Nuclear Bone Scan? As already stated it could also be Peripheral Neuropathy.
  • mrspjd
    mrspjd Member Posts: 694 Member
    #5
    More questions than answers
    Tahoe,

    From one PCa wife/mom to another, welcome here. I’m sorry to read of your and your husband’s situation and that your post generates more questions than answers. With the minimal info shared, it’s anyone’s guess about what’s going on with PSA levels and pain, whether any other health conditions such as diabetes are contributing to pain symptoms, or if metastatic PCa is systemic or focal. For instance, I wonder what specific RT and ADT txs were given and for how long. While on ADT (hormones), a class of drugs called bisphosphonates is often recommended to prevent/lessen risk for bone mineral degradation, including fractures which may be more likely to occur from advanced bone mets. Bone fractures/loss may be a contributing culprit for pain with PCa. Xgeva is often used in the prevention of fractures in advanced HR (hormone refractory) metastatic cases.

    Following RP, I wonder whether ART, SRT, or focal RT was used (or combination) for txs or isolated tumors, etc. Bone and/or CT imaging tests, MRI, along with newer imaging tests such as F-18 CT/PET, or the less available C-11 Choline imaging, may determine whether PCa metastasis is systemic or focal in nature and may identify to what extent and the location of any bone or soft tissue distal tumor(s). Distal metastatic bone tumor(s) located on or near the spine (where PCa likes to hide) or the pelvic region may cause spinal disc compression and/or press on sensitive nerve endings which may cause pain to radiate to the extremities, such as the legs and feet, leading to peripheral neuropathy. Side effects from certain chemo txs may also lead to peripheral neuropathy. Depending on scope, type and location of previous radiation delivered, in rare cases nerve damage from RT may be causing pain. Blood clots from surgeries may also play a role in pain and peripheral neuropathy. All this info may help the PCa onc to determine appropriate txs to mitigate pain, especially if all other unrelated PCa causes of pain have been ruled out.

    A knowledgeable and experienced PCa oncologist should be able to provide more substantial answers to your questions than “it is from the cancer.” If he can’t or won’t, perhaps a second opinion is in order. I hope your husband finds some relief from the pain soon. All the best to you both.
  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member
    #6
    mrspjd said:

    More questions than answers
    Tahoe,

    From one PCa wife/mom to another, welcome here. I’m sorry to read of your and your husband’s situation and that your post generates more questions than answers. With the minimal info shared, it’s anyone’s guess about what’s going on with PSA levels and pain, whether any other health conditions such as diabetes are contributing to pain symptoms, or if metastatic PCa is systemic or focal. For instance, I wonder what specific RT and ADT txs were given and for how long. While on ADT (hormones), a class of drugs called bisphosphonates is often recommended to prevent/lessen risk for bone mineral degradation, including fractures which may be more likely to occur from advanced bone mets. Bone fractures/loss may be a contributing culprit for pain with PCa. Xgeva is often used in the prevention of fractures in advanced HR (hormone refractory) metastatic cases.

    Following RP, I wonder whether ART, SRT, or focal RT was used (or combination) for txs or isolated tumors, etc. Bone and/or CT imaging tests, MRI, along with newer imaging tests such as F-18 CT/PET, or the less available C-11 Choline imaging, may determine whether PCa metastasis is systemic or focal in nature and may identify to what extent and the location of any bone or soft tissue distal tumor(s). Distal metastatic bone tumor(s) located on or near the spine (where PCa likes to hide) or the pelvic region may cause spinal disc compression and/or press on sensitive nerve endings which may cause pain to radiate to the extremities, such as the legs and feet, leading to peripheral neuropathy. Side effects from certain chemo txs may also lead to peripheral neuropathy. Depending on scope, type and location of previous radiation delivered, in rare cases nerve damage from RT may be causing pain. Blood clots from surgeries may also play a role in pain and peripheral neuropathy. All this info may help the PCa onc to determine appropriate txs to mitigate pain, especially if all other unrelated PCa causes of pain have been ruled out.

    A knowledgeable and experienced PCa oncologist should be able to provide more substantial answers to your questions than “it is from the cancer.” If he can’t or won’t, perhaps a second opinion is in order. I hope your husband finds some relief from the pain soon. All the best to you both.

    Peripheral Neuropathy
    Questions

    What was his Gleason score?

    What is this PSA right now or last test?

    Has he had a CT/PET scan and Bone scan and did it show PC in this hip or bones?

    Is he seeing a specialist for Prostate cancer since it is bad?

    Like in my case Gleason score 4+5 (9) low psa, prostate cancer in lymph nodes.

    Also have legs and hip pain from Peripheral Neuropathy cause by the type cancer medicine I was on and Diabeties II will cause major problems with PN. The PC will only cause problems if it is in the bones or Lymph nodes. He maybe needs to see a Neuro Specialist.
  • jimmytt3
    jimmytt3 Member Posts: 6
    #7
    Hip pain

    Tahoe

    I too have terrible hip pain and difficulty walking post radiation treatments for Prostate cancer.  Radical prostatectomy done March 2016 and 39 radiation treatments October-November 2016.  Difficultly with hips began in July 2017.  My MRI’s determined osteoarthritis in both hips and bursitis in left hip. I too am concerned that this is radiation related. Neither my Oncologist, Urologist or Radiologist discussed this as a possible side effect. The pain is constant and taking pain meds does not seem to be a long term treatment plan I would want to engage in. 

  • Old Salt
    Old Salt Member Posts: 1,505 Member
    #8
    Try to look forward

    Very sorry about the pain, but I strongly suggest that you look forward and get help from appropriate specialists. Trying to find a link to the procedures you underwent is not going to solve the pain issue.

  • Chuckect
    Chuckect Member Posts: 45
    #9
    radium 223 link

    checked the radium 223 link and it seems to be out of date or inactive..  i will check with my oncoligist next time i see him.. thanx for the tip..

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