Tomorrow we have multiple meetings at the cancer center and one of them will be for him to get his first 2 shots of firmagon.
We'll also go over the results from the 3t MRI he had yesterday, he already had the CT and bone scan. We're also to meet with a counselor.
It's all so much to take in...
Can you help with important questions to ask at this point?
As his wife of nearly 33 years (he's only 53) this is so complex and nothing about it seems okay enough. What have you found most helpful in general and from your spouse or significant other?
Thanks in advance, so many have been an amazing help so far.
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AuburnAngel
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It is so overwhelming, especially when you are first going through the diagnosis and starting treatment. There's just so much information coming at you and it takes some time just to adjust to the "new normal" as we say.
I have found that just focusing on taking each day, each test, each procedure one at a time. Not thinking about the future problems, treatments, outcomes, etc. helps a lot.
I needed my spouse to mainly just be there for me. Coming with me to apointments was important to me. I needed a lot of emotional support, it's just such a big adjustment to make. I felt such a profound sense of loneliness, just needed my wife to be there.
There's a lot to learn and that's important so that you can become an effective advocate. If you can help with that process that's a good thing. With what I've been able to learn, I've been able to steer my doctors away from unnecessary appointments, tests, etc. several times. If I had known more in the beginning, I could have received a better initial treatment. All in all they have done well, but it's best to be educated enough to participate in the process of decision making.
I remember when I was diagnosed 3 years ago. I had severe spinal pain and a PSA of 227. I did not know what a PSA was and knew nothing about PCa. There my wife and I were, with the oncologist telling me we needed a Firmagon shot immediately (while I was there) so I would not suffer a spinal compression.
We took the leap and I had a shot right then and there. I was in a total fog. We literally knew nothing about PCa, the side effects, or what was ahead.
We had a good oncologist and radiation oncologist. They were aware of the Stampede study which was just published. I had radiation for my spinal pain and started early chemo.
Today, after the Lattitude study was published, we learned that either ADT plus Zytiga + Prednisone or ADT plus early chemo (Docetaxyl) increases life expectancy. If your husband is generally healthy, chemo is not at all as bad as people fear.
That’s a bit of what you might hear tomorrow. Education is key. I found a book by Dr. Patrick Walsh entitled Guide to Surviving Prostate Cancer is a very informative read. You can find it on Amazon. Also the Prostate Cancer Foundation has lots of helpful information. And this forum is great - someone knows the answer to most questions.
Just take a deep breath and get through tomorrow. Then, let us know what you learn and what questions you have. We are all here to help. And we are all praying for you and pulling for you both.
I cannot stress the importance of learning about this disease and being your own advocate. It truly is not a one size fits all treatment approach. Take notes if needed and research any treatment the doctor is recommending. That will lead you into other avenues and give you a good base line on other treatment options. I also want to add don't get hung up on statistics. Most of that data is over 2 years old and we are all different in how respond.
Ask if the approach is going to be an aggressive one. Ask about what his plan is when PSA drops to a low level. That is when cancer is at its weakest point and the time to hit it with everything your husband can take. Some guys are okay with only HT and it's your decision. It will be important to have a doctor that shares in the way you want this treated.
Everyone on here was once where your husband is now. Several of us went into it with high PSA's, Gleason scores and mets anxious and with very uncertain futures. Several of us are still here far beyond what we were initially told.
Yes, all the "medical stuff" is intricate and a lot to learn. The practical logistics of the new reality of appointments and tests and all the rest can be difficult too. You might get some ideas about "Questions to Ask" at a place like this: (Our thanks again, to Allen Edel)
What I have found to be of deepest significance, though, has been the opportunity for both of us to share and support one another during the many emotional ups and downs that inevitably come with the diagnosis. Learning to be more vulnerable with one another, to express our fears and anxieties and hopes and joys, to learn to adjust to our changing capabilities and limitations, to keep a sense of humor and some perspective on the bodily changes and other side effects that come with various treatments.
The first year can have a lot of ups and downs. If you two see a counselor or a support group facilitator and are asked, "What's the hardest part about all this for you right now?", do not hesitate to dive as deeply as each of you can in the present moment and have the courage to really get your hearts' and minds' emotions out there into the open, and to talk about it. It can help you both.
Warm lingering hugs are very good, too.
Charles
(P.S. If going on Androgen Deprivation Therapy (ADT), your husband can get a lot of good laughs and social support mileage out of his Hot Flashes experiences with the post-menopausal women he may meet in everyday life or in cancer support groups. There are also some close parallels between the issues that both advanced breast cancer patients and advanced prostate cancer patients face during the course of their cancer journeys in terms of bodily changes, treatment similarities, and the coming to terms with the new realities, and learning to Live Well, despite it all.)
It is a rude awakening when you find that you, or your loved one has cancer. I found out through a 10PM phone call after we were both in bed. It is critical that you start educating yourself. The best way to start the process are two sights that have information aimed at those just diagnosed. At the very least it will help you with some of the terminology and treatment options.
When you look at these sights or others, please, please do not put much credence in the life expectancy they may list. There are tons of men here that have outlived their expected time, sometimes by decades. The issue is that there are so many new treatments coming out that are dramatically increasing survival rates.
Of course you have already found one of the best sources of information, this sight. Being a caregiver is hard. Please know you and your husband are not alone! You are now part of our family. After all, people like us we have to stick together!
I don't want to over load you with more reading sources but I second what has been said above and would simply add a new book that has come out " The Key to Prostate Cancer" by Dr. Mark Scholz. It is an easy to read resource with many contributors from the Prostate Cancer field. I like it because while it gives you the basics you can then go to the particular sections that deal with the progression of the disease relevant to you now.
Find a way to breathe.....and take care of both of you. Find some kind of stress reliever. You must take care of you while you are taking care of him or you WILL get sick too. Healing prayers for your hubby and good wishes for both of you.
We are at another transition phase after his initial firmagon shots he was switched to 3 month Lupron shots. He finished 6 rounds of Taxotere September 6th, this next week he will be redoing his CT and bone scans as well as bloodwork. Then we go over the results on Thursday to see what progress has been made and whats next. We are also scheduled to meet a radiologist Thursday. My husband is now 54 and a fulltime college student in his senior year.
So what are the questions not to miss? His PSA prior to treatment was 467 and the one taken on September 4th was 28.60. What do you think we'll be looking at? Suggestions?
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