Happy to find others in this scary situation. But I’m sorry that any of us are here. My husband just turned 53 and has persistent PSA since a RP in November. Doc says persistence plus the doubling time likely means metastasis and suggested radiation and Lupron at a low PSA as our last chance for cure.
Does anyone else still have children at home that are getting a front row seat in watching this unfold? We have 6 children ages 13-22. The two youngest are 13 and 14. We have tried to be honest and upbeat, I’ve asked my girls to help me improve our diet (they like to cook). None of the kids seem to know what to say. They haven’t asked a lot of questions. I think they are scared. I know I am. It sounds like this is a long road.
Our friends are just starting to find out. My husband doesn’t care if people know but he doesn’t want to talk about it.
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I don't post often but I think I need to reply to you. I was diagnosed at 50 in 2002. At that we had children ages 26,25,20,18,16,10,6 and 2, and wanted 1 more. My preference was not to tell them anything but my wife prevailed and we told the 6 youngest who lived with us. The older 2 found out from others I had told. The 2 of them came over to see me when they found out. The 26 year old suggested that I get my affairs in order. I haven't seen him since (he is 42 now). Since we desired 1 more child my wife ruled out all of the offered treatments. We consulted with 2 urologists, 1 radiation oncologist, 1 orthomolecular physician, 1 radiation oncologist and 1 medical oncologist I had been seeing for a blood disorder. Some of them offered hope of cure, others not so much. Two days after diagnosis my wife and I began a diet change which kept the PC in check for many years.
After several years of success with the diet I gradually began eating other foods. At work I was given no accommodation for my illness. I was doing alone what was previously a 2 man job (and the customer charged for 2 men) and subsequently fell behind in my paperwork. The job was almost 100% walking all day. I was away from home a week at a time 50-75 percent of the time. I was exhausted. After a 4 hour drive home I was too tired to get out of my truck and walk in the house. I would sleep all weekend and repeat the process the next week. The company solution to this was to assign me more work. They called it "performance improvement process" ( 40 hours of a training course for a product that I was not having trouble with). In many cases a performance improvement process is the first step in the dismissal process. In 2016 my PSA rose significantly and I was considered to be stage 4 (incurable) based on bone and CT scans. I went on disability and then on to social security at 66. The saddest day of my life was when I came home with the scan results and my son, then 23, asked if everything was OK. I had to tell him it was not. I'm still walking around 3 years later and still refusing treatment. All the doctors can offer besides "You goona die soon" is ADT which offers only a poor quality of life. I don't talk about this often and appreciate the opportunity to vent. Ignore any parts you feel are inappropriate.
Thank you for your reply. We share some concerns with quality of life and treatment options. Although my husband has been encouraged to start treatment next week we are going to at least get a third PSA test and try to gather more information.
What was your staging when you first found out? It’s encouraging that you are here to tell your story 17 years later. I hope we can do the same whatever the decision ultimately is regarding treatment.
We told all of our children. My husband called the older ones one on one and the younger ones were the last to know. Hopefully that was the right approach. We think including them may make them less scared than if they found out some other way. I think they are handling it well right now.
I hope you are feeling well and wish you the best.
I think your post deserves a response. I do not understand what a "like" is supposed to mean.
Last night I attended the prostate cancer support group held in my church. We talked about HealthUnlocked and how often the wives are the ones writing for answers. Men's unwillingness to talk about or engage with their own health and health needs is not news: it is why we do not live as long and whh wf srd often emotional illiterates. I often joke that the eadiest way to make a man mute is to ask, "what are you feeling just now?" [Silence will follow.]
Such pontificating does not help you. He is afraid. He is thinking he will die. He is wondering how this happened. He is sad. He is ashamed that he may not be a provider for that lovely family you describe.
You all are doing what you can. It is often hard to get information. It is even harder to get accurate information. The best book I have found is Scholz's Key to Prostate Cancer. This site is rich with information, guidance and support. Diet is crucial, exercise is crucial, emotional tranquility is crucial. From what you describe metastatic disease is probable and radiation plus "ADT" (Androgen (the male hormones) Deprivation Therapy) will br the recommended course. Scholz's very smart book will guide you. I spent over a year getting my head around a diagnosis that I did not want. It IS a process. There id no easy way around it for your husband. My oartner being solidly behind me has made a huge difference, as you will for your husband. Please keep us informed. Everyone on this site wants to help.
Thank you for your kind reply. I just ordered the book you recommended. I imagine we can establish a new normal once a treatment is decided upon. The experience of others is certainly helpful in navigating these new waters.
Hi - I just joined. My husband was diagnosed with metastatic prostate cancer in September at age 53. His PSA at one point was over 800. We have 3 kids. We had just sent our oldest two off to their first year of college. Our youngest (16) is home. We were very honest with them about his situation. We felt it was important that they know the truth as the one at home would be seeing whatever was to happen up close and personal. It was hard for the ones away at school. They don't ask too many questions either. We have told them that dad will likely be on medication for the rest of his life, kind of like a diabetic. We also told them that he will not be cured, but will be treated. We have been lucky, if you call it that. My husband is on zytega and prednisone and gets a lupron shot every 4 months. He has responded incredibly well. His last PSA was 0.1. (yes - zero point one!!) We attribute much of his success to a complete change of diet and daily workouts (5 days a week). I highly recommend the book Radical Remission.
My advice is to be as honest as you feel your kids can handle - don't lie to them - they will never forgive for that, but if you don't think they can stand every detail, tell them what they need to know. When my husband was first diagnosed, it was all anyone in the family spoke about. I finally had to tell them all to shut up - we would not let the cancer define us as a family and I didn't want it to be all my kids heard every time we all got together. I had to tell them to get it together because my husband, kids and I did not need to hear their worries or see them crying. It's hard for everyone and you will find yourself on both sides of the support fence.
The best thing you (and your husband) can do is to just take one day at a time.
A belated Hello! Was thinking of you as we drove in for our monthly PSA check. We have two daughters who were in there mid twenties when this started 5 years ago. There are many more treatment options than radiation and lupron. You should ask about then on the main page. I’m fairly shocked about your doctors response. Our girls got to know their dad a little better because Bill first reduced working then went out on a disability at 66. I work part time and Bill is at home with the dogs. Sometimes it’s hard not to stew in between the long waiting periods with this illness. You are going to always be busy with life, and youth, that is going to be great too but maybe twinged with a bit of sadness. So glad you posted. Get some more info about treatment options. Then hold on to the moments. Ps the best thing I did was to schedule a massage or counseling sessions the day after the doctor appts. The build up to the appt and the stress of the appointment seemed to really lead to a crash the day after.
Thank you. We’ve had a break from doctors appointments and we are feeling more “normal”. I can see some distance from appointment to appointment being a good thing.
We are revisiting options again. And hopefully learning to let the important things shine through.
Sounds like you have a good grasp on the situation-I hope I feel that way soon.
It sounds not great but actually . . . you will get into the "new normal" of living with prostate cancer, and there are valleys but then, usually/often, long periods of stasis. It is important to get a big picture. If you have not tried getting an appointment with a prostate specialist at a research hospital, you might get a lot of information and solace from that. It was the best thing we did during the first few months of hell/diagnosis. It has not been five years of hell but those first few months are really daunting! Like most, our MedOnc sees a lot of different cancers - particular interest and sees more prostate but he goes from prostate to pancreas to breast or whatever. We live in Hawai`i and so we made an appointment at UCSF (where we used to live and have friends to stay with) and saw a specialist there. He had reviewed all the records/scans/bloodwork in advance, and he came in and told us what we were looking at and all of the options laid out in the future. He's done this for us at a few critical junctures and it really made us feel like we had some control over the disease, well, the treatment of the disease. We see him 1-2x/year. He is a consulting oncologist, and our MO here really appreciates having him on board (as he should).
If you can manage a consult with a researcher who specializes and deals only in prostate cancer, it might really help you with treatment options. Fiver years ago, early chemo was a brand new thing. Literally months before my husband's diagnosis, they released the CHAARTED study results for early chemo with Advanced Prostate CA at diagnosis, so we did that. (We also changed from our original MO here who was young and not very aggressive, and had not considered this. The new MO here was like, yup, let's set that up.)
He also just told us that there are now trials to see if prostatectomy is a good call early on even in metastatic prostate cancer. The theory is that because men are living a lot longer even with a stage IV diagnsosis to start, it might be good to remove the prostate early so it doesn't cause problems later on. We were told "never operable" because it was "out of the capsule" - OK. But now, my husband does have tumors growing from prostate into urethra, so we can see how that might be a good idea. Of note, we do understand the hesitancy to remove the prostate because it can have significant complications. No regrets but just to say two things: (1) prostate cancer treatment is advancing in relative leaps and bounds, which is cause for a lot of hope; (2) the motivation behind removal for Stage IV is *because* men are living a lot longer with advanced disease.
My husband was diagnosed five years ago. The first 18 months were pretty radical with chemo and then Provenge and Xofigo. We threw the Prostate Kitchen Sink at it! He did OK during the treatments, continued to work for some of it, but after all that, and with the miracle of Xtandi (for him) he had more than two years of not much happening. He has done 3-4 bike century rides, working part-time, and enjoying life. We are now faced with progression and more chemo, but the next treatment might come up while he is doing that.
You really do live one day, and then about six months at a time. Absolutely right, whoever said here, you have to not let the cancer define you (you have to learn that and remind yourself of that), but it's just part of the new normal, and there can be benefits to that normal as well.
We don't have kids (although they would be right in this age range if we did), but I agree - honesty. They know or suspect, and it's better for them to really know and for you to all be in it together.
Best wishes - it will get "better" (in relative terms).
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