I'm so afraid of leaving my daughters

By KevDog24

1 min read

I just turned 59 in Jan of this year.

Diagnosis and prognosis

December 1 of last year's routine PSA came back at 63. I'm like what!!!??? Biopsy showed 4/12 samples positive. Gleason 8 (4+4) Negative CT Urogram and bone scan. Had Robotic RP Jan 4. The path showed stage 3a. Not in seminal vesicles but margins not clear and extracapsular involvement identified. PSA 7 weeks post-op 23. They are setting me up for PSMA and GU Oncologist.

Anxiety about the future

I fear I'm in for a tough next year or so. I'm so afraid that I'll just die in a year or two. I have two 13-year-old daughters that I want to see grow up and I have a career that is meaningful that I want to accomplish some things instill. I can hardly sleep.

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Albien12 Member
 <inline-mention username="KevDog24" user-id="4554939"/> I read your post and just had my 7 week ultra sensitive test, waiting on results and have been thinking of this post for a few days. My recommendation is to stay calm because you are at the beginning of this journey and the right frame of mind matters. Weigh the positives: you are young, it was stage 3a, your PSMA test is an advancement in viewing that is far better than anything else out there and the literature suggest that if you have an issue they will be able to target it more precisely, you and your doctor are being proactive, you still have the option of radiation which we all risk post prostatectomy. I am not as versed as many on this site, but 47yo and trying to live to my fullest. I have three girls and I too am afraid and didn’t want you to go without some positives to think about. God bless
Dennis E. Golden Moderator & Contributor
I was diagnosed with a Gleason 9 and did surgery in 2013 - it came back and did radiation in 2018 along with hormone therapy- post op PSA today is 0.02 The PSMA scan should help identify where cancer may located. With any luck it will be in clusters that can be treated with radiation. I am not an MD but would suggest that with treatment you most likely will be around for some time. 
1. KevDog24 Member
 <inline-mention username="Dennis Golden" user-id="3259730"/> thanks everyone for all of your replies and well wishes. I want to catch everyone up. I'm in a MUCH better state of mind, body and soul. PMSA showed no cancer in prostate bed but there are 5 perirectal nodes that are involved. Before the PMSA, they would have irradiated that prosatic bed and surrounding lymph nodes and missed all of my cancer. 5 weeks after the post-surgical psa, which was 23, I had another PSA drawn which was down to 9. I'm assuming that that was due to a change in diet. I cut out all red meat and any chicken that was grown on steroids or antibiotics. And generally tried to cut down on meat and dairy significantly. Initially, after the PMSA, my GU Oncologist told me that he thought that I might need surgery, or I might do radiation. And that he was thinking about recommending Lupron times one year and chemotherapy times 18 weeks. But that he wanted to have a tumor board meeting at Indiana University Health. The tumor board met that next week and they were very optimistic. They didn't feel the surgery was a good option due to the location but their genius of a radiation oncologist feels that he can reach all of the areas of cancer with this technology. So at some point in the next few months I will have 36 to 38 treatments of radiation spread out over 7 weeks. I am obviously very grateful for this. So the plan is to take Eligard injections, which is a lupron equivalent, times 2 years, and Zytiga and low dose prednisone orally daily times 2 years as well. Combined with the radiation they say that I have a decent chance of cure, but that even if not I'm not cured I have 10, 15 or 20 years left. For several months I've been incredibly depressed, and suffering from extreme anxiety and panic attacks. I happen to be an emergency physician, and at the time of the surgery I took 42 days off for the surgery. Before and after the surgery whenever I had a patient suffering from medicine to cancer I would carry it for days and it would send me into a downward spiral. As of January 1st, 4 days before my surgery, I became the medical director of our brand new emergency department and so I was facing a great challenge in my job, one that I relished, while facing a severe life threat and a severe threat to the well-being of my daughters at the same time. But now I am feeling much better. For several months all I did was work, transport my daughters to school and their activities, and then stay in bed. But now I'm back to doing my activities. I'm working out again, I'm practicing my trumpet again. I'm laughing again. I'm happy again. They listed all sorts of side effects from the medications and frankly I seem to be incredibly lucky is I've not had any of them. I had a little bit of nausea at the beginning but two and a half weeks into these treatments and I feel great. I've suffered from some of the side effects of the surgery itself. I'm still having trouble with incontinence and I'm working on that hard before I have my radiation. And although I have had decent success with some spontaneous erections a workout dysfunction has been a problem. The penis pump, was adequate for sex, but barely. It wasn't very enjoyable, but a few weeks ago I started taking trimax and it is a Wonder drug. My girlfriend and I are having great sex now. And I'm very happy with that aspect of my recovery. Thanks everyone for your support. And I would just say for the younger man who has been diagnosed to has young children himself, I know it seems daunting and very scary, but as everyone has said there are treatments out there and give yourself a break find someone to talk to and you have a long way to go. 
2. KevDog24 Member
 <inline-mention username="KevDog24" user-id="4554939"/> Sorry for that sloppy nature of the edit. I was going to go back and edit it but I accidentally sent it and I can't find a way to edit it.
Bellalola Member
Thank you, tomorrow he goes for Pet MRI. The bone and cat scan were clear. I hope this will be too
1. Bellalola Member
 <inline-mention username="Dennis Golden" user-id="3259730"/> I have read that the doctor only knows what the pathology is once the prostate is taken out. Your dr is right . 
2. Dennis E. Golden Moderator & Contributor
 <inline-mention username="Bellalola" user-id="4573193"/> What I did not realize was my surgeon was working with a pathologist throughout my 5 1/2 hrs of surgery - who apparently was examining and reporting back on tissue samples. The wonders of modern medicine.👍 Yes once the entire gland is out the pathologist can do an complete analysis ... Good luck with all of this. ... Dennis(ProstateCancer.net TEAM)
Dennis E. Golden Moderator & Contributor
Bellalola What I did not realize was my surgeon was working with a pathologist throughout my 5 1/2 hrs of surgery - who apparently was examining and reporting back on tissue samples. The wonders of modern medicine.👍 Yes once the entire gland is out the pathologist can do an complete analysis ... Good luck with all of this. ... Dennis(ProstateCancer.net TEAM)
Dan Franke Moderator & Contributor
Good luck KevDog24. Your not alone in this. DanF, moderator, <a href='https://prostatecancer.net' target='_blank'>prostatecancer.net</a>.
Bellalola Member
Well all test and scans are in, no spread. Still deciding on whether surgery or radiation is our best option. He wants surgery. I am on the fence now because, being Gleason 9, having PNI, and prostitution extension, I am thinking how can the doctor get clean margins. Dr says he can. The finger like extension is only mm or so out. I don’t know what to advise him to do. If they leave behind cells and you have to wait 6 months to heal before they start radiation, won’t it spread?? Wife to Gleason 9 70 year old, healthy man. 
1. SamuelTaylor Community Admin
 Thank you for reaching out, <inline-mention username="Bellalola" user-id="4573193"/>. It's difficult to make a decision on this, of course. I think that a conversation between you, your husband, and his doctor is the best path forward. It's difficult to advise anything because each person's experience will be so different. Make sure that going into the conversation with the doctor, you have all questions written down and address each individually. -Samuel, Team Member 
2. Dennis E. Golden Moderator & Contributor
 <inline-mention username="SamuelTaylor" user-id="4231218"/> Agree Sam - every patient is different in how the PCa impacts them and how you as "the patient" respond to the various treatment protocols