Hey Fellas, most of you all know my story of having a PSA of 1.4 post-surgery, and after doing a PET scan, additional MRI's and biopsies, I am exploring possible treatments with 2 medical teams, one at Weil Cornell and the other at MSK. Yesterday I visited the medical oncologist and her advice was to go on 2 hormone-blocking drugs, Firmagon and Lupron. It seems I have a definite lymph node in my right pelvic area that is positive for pc and a couple suspicious spots in the left rear pelvic area. The kicker is that because of the extensive PET scan I did there was a spot of concern in my left eye area, and an MRI was ordered to take a closer look. That has now come back inconclusive and a CAT Scan is the next step to see if they can see if cancer is present or it is just an abnormality in the bone, which is very common. While I am grateful for the care and concern of my medical team, emotionally and mentality I am becoming weary of the fast pace of this experience. Just 5 months ago I had no idea about any of this and I just went in to have a routine check-up. My husband joined me at yesterday’s visit, and we were both feeling frustrated by the time we saw the doctor because we were kept waiting for 2 hours. I usually do 95% of these visits by myself, but I was grateful he was there to hear medical opinions of possible treatments. Before I describe what, the doctor said about treatments and lifestyle, I will point out that her personality does lean toward worst-case scenarios and over informing patients. So, she said the spot behind my eye could be nothing, but if it is cancer then doing hormones is the best treatment as they will block the production of testosterone and potentially starve cancer. But that would also mean that there would be no reason to radiate the prostate bed. However, if it isn’t cancer, that I should continue on the path of temporary hormone treatment and do radiation therapy once my PSA and testosterone levels become undetectable. During our visit, she went deeply into explaining the challenges of possibly being on hormone treatment indefinitely which really depressed me. She described weight gain, lethargy, no libido and basically said when all that becomes emotionally or physically unbearable, we could take a break from treatments for a couple of months. I asked the question of what her opinion was if I did nothing right now. She said if the spot behind my eye is cancer, that means the disease is systemic and that with no treatments I could die in a year or 2. But if that is the case and I am treating it, that I could live for many years to come. Perhaps this is a defense mechanism but part of me finds this gloomy outlook to be a little humorous. For much of my life, I have been an extroverted, somewhat masculine, physically healthy, competitive and unapologetically sex-positive person. So, for a doctor to tell me that there is a possibility that I would have to accept a life of possibly becoming lethargic, obese and sexless feels a little ironic. LMAO!!! However, I am taking this journey a day at a time. The most sensible next steps for me is to do the cat scan and start the hormone therapy treatment since that seems to be inevitable whether it is temporary or long term. I have allowed myself to feel a profound sadness around this experience in the last 48 hours, but today I have decided to be in the present and live my life as I would any day. I.e.- family, work, gym, and overall life responsibilities are what is on my plate today, and I will show up for it all. Has anyone had a similar experience? All advice/comments are welcomed.
Unexpected Journey: Hey Fellas, most of... - Prostate Cancer A...
Unexpected Journey
Sounds to me like you're balancing out our reactions and emotions about as well as anyone could. Giving yourself time to feel the sadness is realistic and in my opinion will help keep it from being hidden and then sneaking up on you from behind and whomping you when you least expect it. My own worst challenges have been personal as well as medical, and when I have tried to not acknowledge the negative emotions that have come with them it hasn't worked in the long run. It also sounds like you have plenty of positive spirit to balance out the negative. Bravo.
Yeah Jim, I am taking it in stride. Thaks for your comments and well wishes.
I tell people I went from "60 to 0 in 15 seconds". I was actually paying attention and discovered cancer early..(I thought)...but it was quickly Radiation, then PSA didn't drop to low enough, then Lupron, then HIFU, then Chemo, then Provenge...now XTANDI. NEVER got off Lupron once on. These have all been coming rapid fire over the last (almost) 5 years.
Castration IS what is sounds like...CASTRATION. It's been two years and I haven't really gained weight...NOT singing soprano yet(damn)...but sex drive, well....I've been castrated. The other treatments don't help increase libido either. So if you're in your 50's (as I was) or younger...and you start Lupron. It's a quick jump into what feels like invisibility. Life goes on in a beautiful way, but VERY different.
I'm actually jealous of your Oncologist who seems to be telling you "worst" and "best" case scenarios. My oncologist says NOTHING. That said, I keep up with the "latest" treatment plans on here...and he seems to be following the "new normal treatment" protocol (Stampede, etc).
Until you find out it's going to be "worst case"...hope for best case and enjoy every minute of life. I've been almost a year at the "aggressive, castrate-resistant, & metastatic end of worse case scenarios" and life is still good. Different but very good.
Good Luck,
John
Thanks John for your honesty. Best of luck to you my friend
I’m glad your husband was with you. You should try to have someone at every visit. The extra ears help. I had all your same fears and sadness about hormone therapy. I did intermittent therapy for a while, and I cried each time I restarted. In the end, though, the therapies I have undertaken (endured?) have kept me alive for nearly 12 years now. My husband is much happier about that than worried about the sexual effects. Best to you on your decision.
Hi Conner, Thank you so much for this. this is really encouraging and helps a lot.
I'm very impressed with your attitude. It sounds like the spot behind your eye is too small and difficult to reach to biopsy. If it stays the same size when you have hormone therapy, you will know that it is not a metastasis.
Thanks Allen
Hey there Dreamweaverman, your plate is certainly full and yet your positivity and strength are unwavering. I’ve only been here a few days but I’m already feeling the fog lift because of you and other guys like you that are sharing their stories. I work at a cancer hospital and you would think I would have been more prepared, had more questions and knew something more about the recovery process.... but I wasn’t, I didn’t and I don’t. Your attitude is starting to make me think that I might be able to get off my pity pot and start showing up for my life. Thanks for the share my friend ... I’m sending good vibes for the CT! Norman
With a 'relatively' low PSA of 1.4 you might consider trying the transdermal estradiol (tE2) regimen that I have been using for nine months. My PSA was about the same as yours when I opted for sacral lymph surgery which was a palliative measure to buy me more time since I was very much opposed to subjecting myself to any form of ADT. In retrospect, I wish I had tried the tE2 route prior to the surgery. The surgery did lower my PSA to about half; however, as 'Tall_Allen' mentioned in a previous comment, none of the scans are sensitive enough to identify very small metastases. That being the case, surgery can remove the identified tumors, but will most likely leave some behind. If you look at my latest blood tests results (PSA of 0.046), you will see the dramatic/encouraging changes brought about by the tE2 gel that Dr. Richard Wassersug, PhD recommended. My QoL has not been affected in any way since starting this regimen...I'm still feeling great 14 years post RP. My best to you in this unpredictable journey, Ron
WOW! So much to deal with. With Firmagon and Lupron, I found my emotions on overdrive; from deep depression and despair to sudden feelings of elation and "can do" attitude. From doing routine activities with a sense of purpose to suddenly breaking into tears; tears of grief and loss. Kept telling myself, "it's the drugs, it's the drugs," but I'm not sure that's completely true. With all of this, the feeling of loss and grief can become unbearable; I guess, cuz there's no real end in sight (unlike "normal" bereavement).
And, one of the most troubling aspects of all of this involvement with doctors, is the lack of a shoulder to cry on; doc who just says, "how you doing with all of this? what's it like for you? what are you feeling?" One young doc did ask and after I told him my list of emotional complaints, just stopped, looked at me, put his hand on my shoulder, and said, "I'm so sorry, man. This really sucks." Followed by a long pause. That was all that I wanted; someone to listen.
So, all of which is my way of saying, "I hear you. And, am so sorry for all that you're going through. Cannot imagine what it's like each day. But, it sounds like you're doing all the 'right' things."
On a very practical note: I was never a gym bunny but I have found that exercise - yes, have to force myself to do it - really has helped me with some of my emotional roller coaster and has given me energy and a routine.
EdinBaltimore
Hi Edin, thanks so much for sharing this with me. I haven’t started yet but I am trying to gather all the information and support to begin this journey. It all feels so surreal. Just 5 months ago I was going into primary care doctor for an annual check up. Life on life’s terms is a constant reminder in keeping my sanity and serenity around all this. Be well my friend.
You were in my thoughts over the last few days as i make plans to go to Germany for a PSMA PET scan on 28th January. I wondered how you were getting on and am sorry things have progressed so fast for you. I’m not sure what to say other than I’m thinking about you and hoping the best for you. I have been feeling quite down about the situation myself not knowing what they may find in the scan and what treatment i will be facing. I have felt from the start that hormone treatment was in effect taking away what makes me a man but when all is said and done what choice do we have. We owe it to ourselves and our loved ones to fight this. That having said I don’t believe that many of the side effects need to be automatically accepted. I have no doubt that you will fight them by managing any fatigue and keeping a close eye on diet. I don’t believe your loss of libido will lessen your love for your husband or your drive to please him. I’m glad at least you got the injections working for you something I’m still trying although not with enough success and I’m beginning to lose faith that they will work properly. I have also spoken to men that have had very few side effects from hormone treatment apart from some emotional stuff in the first three months so maybe you will be one of the lucky ones. You are definitely due some luck. Either way your confidence and the assertiveness i believe you have will ensure that you make the best of a bad situation. Let us know how you are getting on as we already said I don’t appear to be far behind you. Bill
Hey Bcg, Thanks for the nice reply. I guess what I will share is that the doctor told me a couple years ago they didn’t have these sensitive scans and even if they find something it is good that we are addressing it early. I do pray you have no surprises, and that you and I can eventually be Adt free. Sending you good vibes my friend
I know how you feel, believe me! So many things to say! Lupron and no testosterone does not "starve" the cancer, it keeps it from multiplying. Each prostate cell weather normal or cancerous has a spot called the androgen receptor (AR). When an androgen molecule comes close to (or touches) the AR, the Prostate cell sub-divides and forms two cells. Without androgens the PCa is stuck. In time the cell dies off and since that cell is not supposed to be there there are no basil cells to grow new cancer cells. But the normal prostate cells can start reproducing after the therapy is over. The same with cells making testosterone. So I have been off Lupron for 9 months because I no longer have cancer and I can occasionally get an erection. However,"plugging in" is not my major goal in life as it once was. Things like cuddling, kissing, and being in love are still important. It is a libido thing. In 2007 the doctor could only "Guarantee" I would live more than 5 more years. So I got my affairs in order, I donated to organizations, but now I no longer have cancer. I am 73 years old now and a good life with positive actions. Now I have 3 other diseases, but they are under control. In 1993 a doctor told me I had hep B and so I used condoms all the time, then in 2004 a doctor told me that test was a false positive. So I was pissed off until I realized my lover died of HIV/Aids and I didn't get it because I wore condoms! So we never know what life will throw at us, and just be grateful for what we have. I go to a MCC church and good positive messages. Be kind to others and the time passes quickly. I was a drug addict and now I go to NA meetings, sponsor people and do service. Only about 50% stay with the program, but it is nice to get hugs from hundreds of friends. I was a pharmacist with CVS for many years and now I can help others with simple questions. So get involved with some local group. I sang in the Orlando Gay Chorus and that was a trip! For a while I had to drop out for health reasons and convalesce at home, but I feel better again. Do things with your lover and get involved together. Above all just keep truckin'.
Life changing journey...
