My story: been having urinating issuesfor a while. At first I thought I was "getting old" but when things got worst I visited a Urologist who did a DRE and boom, I joined the club.
April 2018, Age 53 Abnormal DRE -> PSA 22 -> PET/CT PSMA -> biopsy.
I still dont have the biopsy results so I dont know about Gleason though I dont know how important is that due to the fact that anyway my PSA was over 20.
The PET/CT showed involvement of a few pelvic lymph nodes no bones or distant organs and seems its extra capsular.I'm meeting a Uro-Oncologist next Thursday.
I've been reading the posts here which are very helpful in terms of educating myself and know what to expect, but one thing that I couldn't find here is experiences on how to tell your kids when they are young.I have a 16 years old daughter very attached to her and I keep crying thinking about the moment I will have to tell her about my situation.
Any experience someone can share on this will be highly appreciated.
It's a good opportunity to thanks all the guys here which make this journey just a little bit more bearable
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dorke
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I remember that well, My Daughter was 12 at the time of my dx. My wifen and I sat down and explained things to her, telling her the truth for the most part, but certainly leaving out any gloomy prognostic terms from the Dr. At that time I prayed to be able to see her Graduate High School, currently she is 24 and Graduating from a 3 years post masters program. I wish you the best. We did not tell her till we had a treatment plan in place and I was responding well.
My son was 14 when I discovered I had high-grade prostate cancer. My PSA was never high and my doctors told me not to worry all the while until I came out of surgery when my surgeon told me I had a Gleason 9 cancer. I thought about how to tell my son for months until one day my wife told me that he already knew. Don't know if that was the best way for him to find out, but it was the way it happened for me. The disease nor the knowledge of it changed our relationship. Since that time my son has had his first crush, his first heartbreak, his first job, his first car, and, in a couple of weeks, he will graduate from high school with a diploma and two associate degrees. Life goes on; emotions about this cancer become part of a new reality, but this "new normal" doesn't have to redefine either of you. In fact, it may help refine you into the best dad you can be.
Completely agree about the new normal. The thing is that we are on the verge of the new normal.I guess that once we are all on the same page we will start our "new normal" life and get adjusted to it and to whatever life will bring .
I wouldn’t mention it until you know your treatment options. Lupron zytiga combo could work for you until she is in her twenties without anybody knowing about your condition.
Thanks IT.We are definitely going to share the situation with our daughter once we'll know whats ahead of us.As Dan wrote in his reply , we are going to leave the gloomy details and leave only those which reflect hope.But we will not be able to hide it from her
I also had a 16 year old when dx, as well as a 20&23 year old. The oldest figured out something was wrong when my wife and I kept taking time off to go to the doctors. We waited until we knew what the treatment was going to be so we would be able to answer some of their questions, and told them we we're going to fight this as a family. We were as optimistic about it as we could be. We've kept them in formed as we move forward from treatment to treatment. I to have a special bond with my youngest and determined to see her graduate college, and that's what keeps me going everyday.
If you had lung, liver or pancreatic cancer it might be time for end of life decisions. With no bones or distant organs you are in good shape...lymph nodes have the slowest metastasis...with the current treatments and new ones in the pipeline you will be around for years and probably never die from PCa...just make sure Nalakrats does not pray for you, and if he does stay away from all bodies of water because the side effect is an attack by a Gator.
Gus
Result of Nalakrats prayer...I am waiting for you...Gustave
I don't know where you live but you need to get to a large teaching hospital for your initial treatment they have all the clinical trials as well the most experience with the disease. After that you might be able to get them to work with your local MD. As my wife you want a MO who sees this everyday
I was diagnosed at 49 and I have two young kids (between 9 and 11).
A book that was recommended to me, and I found helpful with my kids was "When a Parent is Sick: Helping Parents Explain Serious Illness to Children" (ISBN 978-1-895900-91-0) by Joan Hamilton, RN, BN, MSc(A). It's a small book, that is useful for any parent, grandparent, teacher or other adult who plays a significant role in your children's lives.
The chapters included:
1. Things to consider as you talk to your children
2. Examples of what to say
3. A child's understanding of and response to a parent's serious illness (by age)
5. Children's reactions to a seriously ill parent
6. Supporting your child
9. When a parent is dying
10. When a parent dies
11. How children understand and cope with death
I felt very well prepared to talk to reveal my condition after reading this book. It's also been helpful for those subsequent conversations during the journey
If you are having difficulty finding this book, send me a chat message and I can send you my copy.
You might try to see if you can order it from the Canadian amazon (they likely ship to the USA)
When you see your doctor about your biopsy results, you might ask him/her about resources to help with your kids. In my city, it was the Cancer Clinic that had counsellors who call you to see how you're doing. When they called I explained that I wasn't sure how to help the kids through this and she gave me a list of books. She also suggested calling the kid's school to find out what they normally do to support kids in these circumstances. (In our case, they had a counsellor there who would sit down with my kids once every couple of weeks for an hour to talk things out.)
I'm sure there are other books, but that was a helpful one for us.
I wish children could be protected from all the pain and sadness of life, but both joy and sadness are part of being human. Having been on the other end, I felt resentful that I didn't know sooner. After all, was I not an integral part of the family? Why should I be left out as if I were some stranger? If you've raised her right, and I assume you have, she is not as fragile as you think she may be.
I'm impressed that you had a PSMA PET scan before a biopsy. I've only seen that done in clinical trials. Where were you diagnosed? A biopsy of the prostate isn't likely to add much information. There are some very rare variants that may affect treatment decisions, but because it is PSMA avid and your PSA was high, that is extremely unlikely.
With cancer discovered in the pelvic lymph nodes and not in any distant locations, you still have a good chance (about 85%) at a complete cure. Here's an article about it:
Allen,Thanks for the link.All the info here helps me get prepared with questions for the MO which I'm seeing on Thursday.
As of your question regarding PET/CT PSMA before biopsy, it just happened that the appointment for the PET/CT was before the biopsy. Since my Urologist was quite convinced about his DRE finding + PSA level, I was approved the scan pretty quick.
My children are in their 30s with their own lives and families. So I sent them a group text in a good news bad news format. My wife still shudders that I did it like that, but at the time I didn’t feel much like talking, and the kids were all fine with it. My daughter immediately took the bull by the horns and started researching every aspect of the disease and treatment. As a Christmas stocking stuffer, she gave me the book “How not to Die.”
We have no secrets, and they are celebrating my good response so far with me.
I was Dx'd in 01/2015 and my wife wanted to tell the 5 adult kids, I said I wanted to wait.
I had an 840 PSA, GL 7(4+3) with mets to L side ureter lymph nodes (Stage IV) and I told them in March and by then the PSA had dropped significantly with the ADT( Lupron and casodex) and Taxotere - chemo.
So, I had way better news for them then and that kinda softened the blow.
One even said at the reveal " I'll worry when Dad worries".
Assume that you will start hormone therapy and stay/get fit with cardio/weights to offset possible muscle loss, weight gain, man boobs. eat healthily and prep for the journey.
When we got the news from the Urologist. Our 12 year old little Princess was waiting for us outside the Dr office. When we came out I will never forget seen her sitting there thinking how are we going to tell her... The first thing she asked us "Is Daddy ok" and he responded to her that he was fine. She asked again what happened? I guess she can see it in my face. So we waited until we got home and to tell her he had cancer. We believe in God so we talked about how we just have to trust in God that everything was going to be fine. Our daughter will be 20 next month and still very attached to her father. We have created the most wonderful memories I can only dream of. I hope that when the time comes you will have the wisdom to talk to her with a peaceful mind.
My daughter was 16 too when I was diagnosed. We are very close. I told her and explained that of all the cancers this one was one of he best because it's slow moving and very common so many treatments and many new ones on the horizon. I used it as a learning experience teaching her how important it is to take your health into your own hands and find the best doctors and do your own research. I let her help me go online researching the disease and treatments. I think it empowers her to help me find my options and to discuss those options. She actually was a great help. Allowing your kid to help (really help) I think helps them to deal with it. They don't feel so helpless. I know it worked for my family.
I was 59 and had to tell my 3 teenagers. I waited until I had a treatment plan and some more information from the doctors. Then told the kids, explaining that prostate cancer is usually one of the "lucky ones", and that treatment and survival rates are better than for most other cancers. The unknown is tough to deal with. I had radiation, then seeds. That was nineteen years ago! Keep it as positive as possible without lying and good luck!
Like you a DRE is what got me sent to a urologist and to a diagnosis of cancer. I know you are not happy to be diagnosed, but I'm thinking that you should be glad that the disease has been caught early. I am an advocate for DRE testing as my PSA was low and would not have gotten me treated. Some on this forum have disparaged DRE as a diagnostic tool.
It was important to me to show my kids I was still strong. (Not so much now, but it was important then.) My daughter was a freshman in college. I did not tell her until after I moved her out of the dorm at the end of the year. I thought that might be a buffer. I think timing matters, too. I delayed telling her and my then junior in high school son until they had completed their exams. I also told them then (and still now) I will answer any question they have honestly.
My son was 12 when I told him. His response was "Is he a beneficiary in my will?" That's when I kicked him to the side of the road
Actually my wife and I told him in a straight forward way and he was taken aback for awhile until he researched it online. The slow growing part gave him hope and he said that I would probably die from laughter. I think the pain it the ass is right. He's a great kid and he's for sale. It is much harder for you to tell your daughter than it is for her to hear it. In the back of your mind you'll always think what is she going to do if you go.
Been There, Doing That and have the Tee Shirt and Tattoo to prove it.
For me that was the hardest thing. Coming out of the closet as a person with cancer.
I was just telling someone at work (whose husband was diagnosed with colon cancer) how hard is the experience of telling people. (She was surprised that I knew).
Especially hard is telling the first few people, who tell other people, etc. etc. So everyone knows but everyone is afraid to bring it up and talk about it.
I still can’t talk about it at the club I’m going to tomorrow. It’s just too awkward. And yet they all know because people talk because I put it on Facebook and one of them “was” a Facebook friend.
If this helps you understand that everyone finds it hard to discuss.
Except my bff who just blurted it out for everyone’s benefit. 😐 and now I’m thinking about him and getting old. Anyway thanks for talking about this and getting me to share and so forth.
Kevin was 44yo when he was diagnosed with stage 4 prostate cancer and our children were 4 and 7. His prognosis was poor (PSA 2740, Mets everywhere, pancytopenic from bone marrow invasion). We told them right away that daddy had cancer but the cancer was “treatable but not curable “. I was honest with them the entire journey and we spent a lot of time together as a family. As he progressed, I discussed what dying means to them and I read many books on how to work through grief with your children. He died 21 months after diagnosis (January 2017) and they were prepared . They have handled his death with courage and strength and have adapted wonderfully. My advice is to always be honest and tell the truth when they ask questions.
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PSA Increase from 11.7 to 34.8 in 2018. Two Axumin scans negative for recurring prostate cancer.
Back From the Dr.
Have any others had "clear" pet scans before the new one? And then Suddenly with the new test....metastasis appears!
Why do Bone Scans and CT Scans if PSMA-Pet are available?
My Introduction - elevated psa, unconfirmed prostate cancer
