Hormone Therapy
Has anyone had the ability to stop their hormone therapy? I was diagnosed with stage IV about 2 years ago at the age of 41. I went through 6 rounds of Taxotere along with Lupron and Zytiga. I also had a prostatectomy about 6 months ago.
Through all the treatments my most difficult side effect was my loss of sex drive. My wife and I have never had a crazy sex life but it was very important. I have been diagnosed with Asburgers and have trouble connecting emotionally with people. I think I used sex as a way to stay connected with my wife. Since my most recent surgery, I feel like my last little bit of desire and ability is completely gone.
My wife has been understanding for the most part but without my ability to connect with her outside the bedroom, she feels like we are more like roommates then in love. Plus she is only 40 and her sex drive is getting more charged while mine is nonexistent. I feel like if I don’t go off of the hormone therapy, I may lose her. I also have two young kids in the mix.
So my question is how risky would it be to go off the hormone therapy while continuing regular PSA checks? I don’t want to risk making things exponentially worse but I also don’t know what I would do without my family.
Hi Greyhair. Sorry to hear about this diagnosis at such a young age. It is understandable that you have these concerns and it shows great empathy for your wife and family that you are looking for alternatives and answers. Have you had a chance to speak with your doctor about this question? For your protection, we cannot give medical advice over the internet. I can say that I know there are treatments besides hormone therapy, although I can't speak to what the impact on your treatment or sex life would be. I want to share with you this article from the Mayo Clinic on treating stage IV prostate cancer: https://www.mayoclinic.org/diseases-conditions/stage-4-prostate-cancer/diagnosis-treatment/drc-20377972.
In addition, you may want to proactively consider talking with a professional to discuss dealing with these questions, whether singular or with your wife. I also want to share this article from our contributor Doctor Nick on "Selfless Sex - Rebuilding Intimacy," with links to additional material: https://prostatecancer.net/living/selfless-sex-rebuilding-intimacy/. Wishing you the best and please know that this community is here for you. Richard (ProstateCancer.net Team)
Hi BriK. Your concerns about about the intermittent hormone therapy are certainly understandable. For your protection, we cannot give medical advice over the internet, but I can relay to you some information I found on the topic.
This study of intermittent treatment from 2012 found "no statistical difference in either overall survival or progression-free survival was shown between intermittent and continuous ADT and suggests that intermittent might be as safe as continuous castration:" https://pubmed.ncbi.nlm.nih.gov/22502816/.
This more resent study(2016) of patients with locally advanced prostate cancer, which sounds like your case, found similar efficacy for intermittent treatment, but no apparent quality of life benefits, leaving cost reduction as the primary benefit: https://pubmed.ncbi.nlm.nih.gov/26520703/.
Finally, I would call your attention to this article from 2019, which did a meta-analysis of existing research on the topic, in light of the most recent advances in PCa treatment: https://www.urotoday.com/recent-abstracts/urologic-oncology/prostate-cancer/110712-revisiting-intermittent-therapy-in-metastatic-prostate-cancer-can-less-be-more-in-the-new-world-order.html. The authors concluded that "The evidence to date cannot exclude inferiority" of intermittent therapy and that "The best longevity is seen in patients who receive newer hormone therapies or chemotherapy in addition to continuous hormone therapy. Whether these newer therapies would be as effective if given intermittently is an important but unanswered question."
Hope this information is helpful. There are absolutely other studies out there on this topic, although these give a feel for the breadth of opinion. Your doctor should be able to provide additional information and how it might apply to your particular case, as quality of life outcomes of intermittent therapy may depend a lot on the particular side effects a patient undergoing continuous deprivation therapy is experiencing. Please feel free to keep us posted on how you doing. Best, Richard (ProstateCancer.net Team)
Hi Richard and thank you for the info and links, which i will read in full. At the moment im leaning on side of sticking with the continuous hormone therapy. I am very lucky that I have a very close and loving relationship with my wife of 40 years, and she will support me throughout whatever the future holds, we will get through this together. I am not meeting my consultant again until after my 5 weeks of radiotherapy starting on 14th May, so there won't be a change in my treatment before i see him again. I'll certainly let you know how I get on, and thank you for your helpful message.
Thank you again
Bri.
, in addition to Richard's comment, I'm including a couple from the Facebook page. If you're on Facebook, you can see it here: https://www.facebook.com/prostatecancerdotnet/posts/944585952622938?comment_id=945995065815360 "8 months of Lupron was enough for me......."
"Greyhair, I have to fully agree with Richard—listen to your doctor. I had a 6 month Lupron shot in July 2015, but it lasted a full 10 months. (As I’ve said before, for 10 months I had to look up what S-E-X meant in a dictionary.) Fortunately my PSA was undetectable after that (prostatectomy in 2013 and radiation in 2015). But I assure you I would still be on Lupron if necessary as my dad died of bladder cancer that metastasized throughout his bones just like PCa does. I was his caregiver for the last six months of his life, and I’ll do anything to avoid going like that. Our best to you. Len Smith"
I also wanted to add that it sounds to me like maybe there are a few different issues at play. You want to be able to be intimate with your wife physically, but you also want to make sure she's happy. Is she able to express what would make her happy? Are there goals the two of you could work on together to get there? If she's open to discussing it further, I wonder if there are some creative options while you're still on treatment. The second link Richard shared on "Selfless Sex" offers some ideas, and of course your wife may have others.
Todd also deals with this subject in a few of his articles. Including them all here: https://prostatecancer.net/author/todd-seals/.
I hope you'll let us know how things go for you. Please check back when you can.
- Nina, ProstateCancer.net Team
Thanks so much for all your responses. It’s good to know there is a community of people facing the same challenges. I will take a close look at the links you provided. I try to find things through normal searches but a lot of the information doesn’t really hit home with me because of my age.
@Grayhair, Just an FYI ... We have a few younger guys in our group who admit that having prostate cancer and treatment at that point in their lives was more difficult considering their desire to have an active and ongoing sex life.
While it is always a personal choice a few decided to look into doing the implant procedure. All strongly suggest that if anyone is considering this that they do a lot a research prior. All stressed the need to find a urologist that has extensive experience with that specific procedure. Two of the men indicated that they needed it redone.
At age 76 i decided to take a pass. Good luck on your journey
... Dennis(prostate cancer.net Team)
