Getting so concern!

Ivie25
Ivie25 Member Posts: 7 Member
edited June 2023 in Prostate Cancer #1

My husband had prostate cancer in 2005. Prostectomy completed and radiation immediately. PSA went completely zero (.01). However, urologist shared that cancer was quite aggressive after his surgery. Five years after- PSA starts increasing very slowly. PSA took years to over 4- no changes but to watch until it gets to 4.0/ Once got there they said wait until 6...  They started oncology meds. A year later- PSA increased to a bump from 5.5 to 9. CT scan showed a "mark" in pelvic done- treated with radiation.  10 treatment. PSA reduced to 1.5. One urologist shared that he was cured. Well, I know better.  His PSA after 3 months went to 7 and 3 month after is now back to 30. They changed oncology meds. His strength is gone as expected for changes in meds. It is worrisome he is not hungry and losing weight too fast. lab will be done this week and teleconference next week. The oncologist only sees him 2 minutes to say, everything is ok. He wants to change oncology back to his urologist because he felt care for and lupron injection had delay the increase of PSA for many years. he is 76 years now. I'm not sure if to be angry with the care, scream to the oncologist (by the way- my husband only went to oncology 1 year ago- after I push to get specialist care- but he is so distant and uncaring). Is it maybe too late for oncology care??? Im concern and scare, angry and feeling conflicted... Thank you for listening!

Comments

  • Clevelandguy
    Clevelandguy Member Posts: 1,206 Member
    #2

    Hi,

    What Oncology meds was your husband on? Sounds like from what you have reported a second opinion with different doctors/hospital network might be in order just to correlate the previous findings.

    Dave 3+4

  • Josephg
    Josephg Member Posts: 460 Member
    #3

    A Medical Oncologist who specializes in PCa should be your primary medical specialist in your father's case. If you are not happy/confident in your current Oncologist, then find and engage another Oncologist.

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #4

    I am so sorry that your husband received such poor follow-up care. The general 'rule' after surgery is to follow PSA very closely and take action if the value goes over 0.2. Taking action means at the very least a serious discussion with an oncologist with a lot of experience in prostate cancer. Unfortunately, that's all water over the dam. By ow, your husband's cancer has metastasized and serious therapy is required to keep his cancer under control. I cannot advise you about the preferred treatment, but I am sure that androgen deprivation therapy will be part of it. Perhaps chemotherapy should be added to regain some control. But as I wrote, I am not knowledgeable about the best treatment for a case such as this one.

    You absolutely need to find the best medical care under the circumstances (as Josephg already emphasized). Which country do you live in?

  • Ivie25
    Ivie25 Member Posts: 7 Member
    #5
    https://csn.cancer.org/discussion/comment/1706240#Comment_1706240

    A irate tone 500mg twice a day and orgovix 120mg

  • Ivie25
    Ivie25 Member Posts: 7 Member
    #6

    A irate tone. Dislike self correction 😞

  • Ivie25
    Ivie25 Member Posts: 7 Member
    #7

    Here it’s changing the word again… Abiraterone

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #8

    In other words, he is getting 'double' hormone therapy (Orgovyx + abiraterone/Zytiga). I hope that will bring the PSA down to very low. Unfortunately, there will be side effects, but they vary a lot among patients. In case he hasn't been told, encourage your husband to stay active. It may be hard, but it's worth it. Also, study (both of you, preferably) the following information:

    About ORGOVYX® (relugolix) | Patient Website

    and

    Prescription Treatment with ZYTIGA® (abiraterone acetate) | ZYTIGA® (abiraterone acetate)

  • Old Salt
    Old Salt Member Posts: 1,530 Member
    #9

    I gather that your husband is getting 'double' hormone therapy (Orgovyx + abiraterone/Zytiga). That regimen should bring his PSA down to very little. For how long, we don't know. These drugs do have strong side effects, but they vary a lot among patients. Encourage your husband to stay active (exercise); it can really help.

    With respect to the side effects, please read (both of you):

    About ORGOVYX® (relugolix) | Patient Website

    and

    Prescription Treatment with ZYTIGA® (abiraterone acetate) | ZYTIGA® (abiraterone acetate)

  • Ivie25
    Ivie25 Member Posts: 7 Member
    #10

    Things have changed lately, his PSA still going higher to 182. Severe pains for weeks, 3 ER visits all giving muscle relaxers until ct scan showed the metastasis in hip bone a bit bigger than a year ago. Hydrocodone from oncologist and recommended to go back to radiation. Radiologist suggested cyber knife. 2 days later severe pain in upper back. If sitting or lying done pain was less, trying to get up pain shot to 10 and unable to breathe and shortness of breath. When to ER- many diagnostic tests all normal except cancer is in spine too T4. He started chemotherapy on Thursday and radiation still on the plan to start after ct scanner is analyzed and planning set. He is doing ok as no side effects yet from chemo.

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