Deciding to end treatment or not?

Momschooling

My husband has been through a lot over the last 5 years ( he is currently 63) but we are now at the point where we really need to decide if focusing only on comfort care is best. Since February things suddenly became very bad with spinal metastasis, which then turned into fractures one pressing on his spinal cord putting him at risk for paralysis. He did radiation which didn't help much to those mets, and one round of pluvicto which was absolutely terrible on him and he spent 4 days in the hospital. In the hospital everything was off balance he also developed shortness of breath and mild heart failure. He had a low sodium crisis and that's when we discovered his mets had become fractures and cancer had grown. Neuro says any surgery is too risky as his bones are extremely fragile( he already had osteoporosis from being on adt treatment). The Dr is offering one last ditch chemo option but it's harsh and he became resistant to docetaxel. The new one is jevtana ( he thinks this one has low chance of helping) with carboplatin but he said my husband would need a blood transfusion first and this can worsen heart symptoms. My husband right now feels his body can not take any treatment at all, so we are giving him a month to see if he improves and do more scans before deciding on hospice or not. I don't want treatment to kill him before the cancer and I absolutely don't want him to live long enough to become paralyzed. The oncologist says he could have him on hospice status at any point we choose which is defined by 6 months or less life expectancy and hes also leaving the treatment option open. If anyone has been through this with their spouse or is currently in hospice, how did you know it was time to stop treatment?

On_A_Journey

I'm very sorry to learn of your predicament. My thoughts are with you both.

I don't have much to offer, but I did note that your husband's osteoporosis is present because of his previous ADT treatment. Did you know that the vast majority of side effects are attributed to 'loss of testosterone' which is true, but it is actually because of the loss of the small amount of estradiol which is present in males from the automatic conversion of a portion of testosterone into estrogen?

I am not on ADT but I face the prospect of it sooner or later. Through my research I have learnt that treatment with estrogen, which once upon a time was normal, is bone sparing (and also eliminates hot flashes - which you could probably attest to!). I'm just speculating that estradiol patches will alleviate the bone symptoms at least, and result in a better quality of life.

Good luck. Again, I'm very sorry to learn of your situation. ❤️

(I'm 62 and experiencing 'biochemical recurrence').

Momschooling

https://csn.cancer.org/discussion/comment/1722669#Comment_1722669

My husband was stage 4 gleason 9 when first diagnosed, so we always knew time was limited but the adt did work for a while very well. Interesting about the estrogen...I had two estrogen positive cancers myself and took anti estrogen treatment for a period. I knew this could affect my bones but didn't realize an estrogen patch could have helped my husband.

Old Salt

Your post brings to light once again, that prostate cancer can be a VERY serious issue. I am sure I won't be the only one expressing my support to you both.

You have laid out the background of your husband's case quite well and, as a result, convinced me that providing hospice care may well be the best course of action.

Please do take care of yourself as well and call in help as appropriate.

Momschooling

https://csn.cancer.org/discussion/comment/1722676#Comment_1722676

Thank you, yes most prostate cancer is low grade and very treatable unfortunately, though those with the aggressive can get it very badly. Having said that even with this type, he had a solid 2 and a half years with minimal side effects and up until February was functioning pretty well. I am glad we took advantage of making some great memories over the last few years, but the abrupt change caught us all off guard. Cancer can be very tricky, even while under going treatment.

centralPA

I think it is important to know that hospice care (palliative care) is not giving up, it's just ensuring a highest quality of life for the remainder. They may still choose radiation for a painful met, or a chemo that slows it while not making you feel horribly sick 24/7. Or it may just be pain medication.

My father switched to palliative care at the end of his kidney cancer fight. In hind sight, it seemed like that was when the real care for him started. Up to that point, the cancer was the point. Find it and kill it. Under palliative care, he became the point. Care for the person. Does that make sense?

Momschooling

https://csn.cancer.org/discussion/comment/1722686#Comment_1722686

Right now he has a palliative care team but they told me in hospice he's only allowed comfort care no treatment, so it's confusing. Hopefully everything will become more clear soon. We were also told that it's ok to leave hospice if he changed his mind and wanted more treatment.