How do you find a Counselor to help navigate through prostate cancer?

Posted by jime51 @jime51, 4 days ago

I'm really struggling with the effects of treatment following radiation and facing a suggested 15 months more of ADT. My wife and I agree that seeing a counselor may help. We live about an hour west of Dallas TX. Do you have a recommendation for finding a counselor with prostate cancer experience?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Most cancer hospitals have some form of "social worker" to help you with these kinds of issues. I used one before treatment and she then connected me with a local virtual support group. You might try asking your Urologist/Oncologist to help you meet with one who can hopefully point you to some groups.

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Profile picture for survivor5280 @survivor5280

Most cancer hospitals have some form of "social worker" to help you with these kinds of issues. I used one before treatment and she then connected me with a local virtual support group. You might try asking your Urologist/Oncologist to help you meet with one who can hopefully point you to some groups.

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@survivor5280 Thanks. I have reached out to the oncology nurse who leads our local monthly support group at a cancer center. I may need a little extra personal/intense conversation at first. I participate in the twice-monthly online Mayo support group, also.

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Profile picture for jime51 @jime51

@survivor5280 Thanks. I have reached out to the oncology nurse who leads our local monthly support group at a cancer center. I may need a little extra personal/intense conversation at first. I participate in the twice-monthly online Mayo support group, also.

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@jime51, I second @survivor5280's recommendation of reaching out to oncology social work to help connect you with the type of counselling you desire specific to prostate cancer.

Oncology social work is an often overlooked service offered at large cancer centers. You may find this blog post, written by the Mayo Clinc oncology social work team, helpful to learn more
- How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

In case your needs also hinge on mental and sexual health, there are also counsellors who specialize in cancer's emotional effects on sexuality. See this article:
- Regaining sexual health after cancer treatment https://cancerblog.mayoclinic.org/2022/01/19/regaining-sexual-health-after-cancer-treatment/

Good idea to speak with the oncology nurse. I'll be interested to hear what you find out.

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After you get a counselor revisit the need/ benefit of long term androgen therapy (LT-ADT/LATD). There is evolving studies that indicate some patients may get marginal value beyond 6 months (ST-ADT/STDT) or no benefit. This comment is based on recently published genomic testing studies. The devil is in the details, age, metastasis status, Pet-Scan, quality of life issues, other health considerations. A lot of information relative to disease matters can be found on the PCRI.org
You-Tube. The videos have the date produced. Obviously newer information may be more relevant to medical treatment. Good Luck

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Profile picture for thmssllvn @thmssllvn

After you get a counselor revisit the need/ benefit of long term androgen therapy (LT-ADT/LATD). There is evolving studies that indicate some patients may get marginal value beyond 6 months (ST-ADT/STDT) or no benefit. This comment is based on recently published genomic testing studies. The devil is in the details, age, metastasis status, Pet-Scan, quality of life issues, other health considerations. A lot of information relative to disease matters can be found on the PCRI.org
You-Tube. The videos have the date produced. Obviously newer information may be more relevant to medical treatment. Good Luck

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@thmssllvn Thanks! I called the PCRI helpline and had a very helpful return call last night, someone near my age who started PC much earlier than I, with the experience of 12 years on ADT and now 5 years off. At my next oncology appointment in November, my original plan was to abandon the suggested 2 years on Orgovyx and change to Nubeqa after one year, taking it for six months, then taking a holiday. Following my conversation with "Jonathan," I'm going to instead suggest adding Nubeqa and taking both it and Orgovyx for six months, then going off (assuming PSA continues to be undetectable). Life for my wife and me has changed so much during treatment and I'm hoping there will be some life left afterward. At my age, testosterone returning to near normal is basically a coin flip.

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If you're having issues with fatigue and depression, also consider a psychiatrist for meds. Meds + talk therapy helped me more than talk therapy alone, especially in terms of getting energy back. I'm now at the point I just check in with the psychiatrist every three months and the psychotherapist only as needed.

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I would view it as an event driven emotional issue that most experienced therapist are well versed in. Really nothing unique in regards to struggling during a cancer diagnosis. I would suggest seeking the best therapist around. I would think anxiety around death and intimacy would be near the top of the list most of us deal with and therapist deal with people and their fears everyday.

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Profile picture for chippydoo @chippydoo

I would view it as an event driven emotional issue that most experienced therapist are well versed in. Really nothing unique in regards to struggling during a cancer diagnosis. I would suggest seeking the best therapist around. I would think anxiety around death and intimacy would be near the top of the list most of us deal with and therapist deal with people and their fears everyday.

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@chippydoo Perhaps I'm looking for more of a life coach through the treatment process: someone who can monitor me personally and recommend actions regarding nutrition, exercise, social interaction, and coping mechanisms and help hold me accountable. I lost both my dad and my younger sister to suicidal depression, and there are far too many times I would like simply to fall asleep and not wake up. I've promised my wife that I will not take actions to harm myself, but I would also like the two of us not to have to spend the next 2-3 years during which life for one of us is mostly miserable. I hope this makes sense. I think someone who has guided other prostate cancer patients through treatment could be helpful.

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Profile picture for jime51 @jime51

@chippydoo Perhaps I'm looking for more of a life coach through the treatment process: someone who can monitor me personally and recommend actions regarding nutrition, exercise, social interaction, and coping mechanisms and help hold me accountable. I lost both my dad and my younger sister to suicidal depression, and there are far too many times I would like simply to fall asleep and not wake up. I've promised my wife that I will not take actions to harm myself, but I would also like the two of us not to have to spend the next 2-3 years during which life for one of us is mostly miserable. I hope this makes sense. I think someone who has guided other prostate cancer patients through treatment could be helpful.

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@jime51 Check out a group called "Immerman Angels." They pair you with a "prostate cancer mentor" who has gone through something similar to what you've gone through. I haven't used them but a couple guys in my support group swear by them.

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Profile picture for jime51 @jime51

@chippydoo Perhaps I'm looking for more of a life coach through the treatment process: someone who can monitor me personally and recommend actions regarding nutrition, exercise, social interaction, and coping mechanisms and help hold me accountable. I lost both my dad and my younger sister to suicidal depression, and there are far too many times I would like simply to fall asleep and not wake up. I've promised my wife that I will not take actions to harm myself, but I would also like the two of us not to have to spend the next 2-3 years during which life for one of us is mostly miserable. I hope this makes sense. I think someone who has guided other prostate cancer patients through treatment could be helpful.

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@jime51, there are a variety of programs that can match you with a trained mentor. @scottbeammeup mentioned Imerman Angels. Here's the link https://imermanangels.org/

MD Anderson has a matching program called myCancerConnection https://www.mdanderson.org/patients-family/diagnosis-treatment/patient-support/mycancerconnection.html

The American Cancer Society has ACS CARES™ https://www.cancer.org/support-programs-and-services/acs-cares.html

Mayo Clinic has patient navigators https://connect.mayoclinic.org/blog/cancer-education-center/tab/patient-navigation/#ch-tab-navigation

Each of these programs are slightly different. Hopefully one matches your needs. A social worker can help you choose a combination of peer and professional services that address your specific wishes.

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