Prostate Cancer Survivors

 

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Beware: PSA can be falsely lowered by medications prescribed for an enlarged prostate & questions.

Hi,

I am from New Jersey. Unfortunately, I lost my husband to an aggressive form of prostate cancer in July of 2016. We didn't know that the medication he was taking for his enlarged prostate could falsely lower his PSA. We also didn't know that prostate cancer could be more aggressive in younger men. My husband was 62 and was treated by a urologist for 3 years prior to his diagnosis.

My family and I still have many questions for the oncology team that cared for my husband that remain unanswered till today. I am wondering if anyone can tell me how long it takes for an aggressive prostate cancer to metastasize? I worry that waiting a few months may have been the difference in my husband's outcome. I blame myself for this, but the doctor told my husband he could wait until February to have the biopsy after his exam in December.

By May we were at a cancer treatment center. The oncologist told us that if my husband's prostate cancer went untreated with his # of circulating tumor cells at 16 & his PSA at 20 he would probably only have 5 years. He died 14 months later. After 4 cycles of chemo, his scans came back clean, his PSA was zero & his circulating tumor cell count was zero. He was prescribed an oral chemo afterward, but by December his numbers started to creep back up.

Things began to go down hill quickly, more chemo was prescribed, but then his cancer invaded his colon. Genetic Testing was done, but it took a while to get the results. Radiation was started, his tumor there went from 10cm to 1.5cm when it was completed & this was promising, but the now the cancer was in his liver and he was very weak & beat up. I asked the oncologist about a liver transplant, he told me his liver was working fine & once my husband recovered from the radiation they would start him on a promising medication based on the genetic testing in 2 weeks.

I feel that we were given false hope and that once the cancer went to his liver we should have been told that he should get his affairs in order. Oncologists and their teams need to provide hope, but also need to be realistic. By the time my husband was placed on Hospice he lived only 4 days. Hardly enough time for family and friends to say a proper good bye. I know that death comes suddenly to many, but when a person is being cared for by a team of doctors in a cancer center, they should be honest with the family regarding treatment, prognosis, & quality of life with treatment or without treatment. This is part of their job, isn't it? There's much more to this story, but I have already went on long enough. Thank you to anyone who may help provide me with some insight regarding these questions.

Beware: PSA can be falsely lowered by medications prescribed for an enlarged prostate & questions.

Jo, don't beat yourself up about this. There are no golden rules about PCa that say a cancer must behave in a particular way. Your husband was very very unlucky. Nothing you have written suggests medical negligence to me. Some men find mets start with very low PSA scores, others can go into the hundreds before this happens. Velocity of PSA growth is not predictable, either.

I have PCa in my liver, too, but it is treatable. I'm on cabazitaxel chemo at present, which I expect to deal with the problem. My mets became established on single digit PSA scores.

My blunt advice us to move on with your life, which I trust will be kind and happy.

OC in England.

Beware: PSA can be falsely lowered by medications prescribed for an enlarged prostate & questions.

Thank you very much for your reply. I appreciate it. I wish you the best of luck with your treatment and that your cancer goes away and never comes back.

All the best....

Beware: PSA can be falsely lowered by medications prescribed for an enlarged prostate & questions.

Jo Ann; Always sad to hear tragic stories such as yours. We on this site all grieve whenever such news is passed as we have a special understanding that comes with being brother victims. O.C. gave what is probably the most accurate answer there is for your questions. This is a devious, sadistic, disease that can range from seemingly harmless to killer and is totally unpredictable. When such tragedies strike, we all tend to second guess our own decisions and other's, wondering if it would have made a difference. Read some of the many stories on this site and you will see this is not unusual. Unproductive as such questioning is, it is hard not to do. Do not beat yourself up over what might have been, could have been, or should have been. Go on with life as your husband would have wanted you to do and cherish the memories you have of your time together. Sympathy and wishes for the best for you and your family, Jon.

Beware: PSA can be falsely lowered by medications prescribed for an enlarged prostate & questions.

Thank you for your kind words and insight. They are welcomed. I know my husband wanted me to be ok, and I'm doing a little better each day. I am very thankful for the time we had together and do my best to honor his memory everyday. I'm fortunate to have wonderful kids, grandkids, and friends who provide support and joy.

I will read some of the stories that are on this site, I'm sure they will be helpful. I also wish you the best with your fight and hope you are doing well. Prostate Cancer can be an awful and unforgiving disease. I hope the medical researchers can come up with better testing to catch it earlier in the future. Thank you for taking the time to talk to me.

All the best,
Jo Ann

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