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.
An Unexpected Journey: Hey Fellas, most... - Prostate Cancer N...
An Unexpected Journey
My dad basically ignored a high PSA for probably over 10 years, until it reached 5000--and would have continued ignoring it if he hadn't started getting pain and swelling in one of his legs. He went on ADT, had a good response--first Vantas and Casodex, then switching after a few years to Lupron--he also had some other repository form of med. and IV bisphosphonate (zoledronic acid). He had a great response. He was probably close to 80, so I don't know how big an issue his libido was for him, but he didn't get fat or lazy, lived to 91 (also surviving lung cancer surgery) and died of a heart ailment. I don't know how typical his experience was (and reading the advanced prostate cancer list I see it can go badly), but some people do fine.
I can appreciate that doctors don't want to over-promise and under-deliver, but there's got to be a way to balance the needs of informed consent and not crushing a patient's hope. My cardiologist is like that. Every time he checks me I leave the office thinking I'd better get my affairs in order.
Thanks D, For a nice response. Yeah I am doing a lot better now. I mainly am taking it a day at a time. I let the feelings come and go, and I do what's in front of me at any given moment. Right now I am just waiting results of Cat Scan and the approval of drug from insurance company. Best Wishes
hi there today I have read bad things about Lupron so please make an informed decision
Stephen Fry has a similar case to you and I think he is looking into radiation treatment he doesn't have your eye issue which I hope is benign don't forget the importance of a good source of iodine preferably organic sea kelp also inositol has been proven scientifically to shrink tumours please look into these issues and keep your spirits up
Please read Jimhoys recent post about Lupron fog
Thanks Lily, I will definitely look into those and I am vtakingnit a day at a time.
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
Thanks Ron, This helped a lot.
Kudos to you, Dreamweaver for your attitude in a situation with PC combined with metastases. A positive attitude has everything to do with your bodies own abilities to fight this terrible disease. I know that feeling the blues and even depression are unavoidable from time to time, but at least you have a partner to help you through it. Your case was so sudden, and you are evidently still young, so it is no wonder that your mind would be spinning with this "new normal." Keep fighting the good fight. We are all on your side.
Thanks Jeff!
First, keep smiling and enjoy life. That has helped me. I was diagnosed at 42 in fall 2015. After surgery, my psa was measurable, so I was put on ADT and had radiation. I was on ADT for 2 years I definitely had LBF, hot flashes and also had pretty regular laughing spells. I finished my treatment about 9 months ago. My brain definitely is better, fewer hot flashes and laughing spells are largely done. I'm glad to feel more sharp and normal. Because of the radiation, I have some leakage so I often wear a pad, and it is hard to control when running or drinking. Also, I wish my libido would return, but there isn't a day a regret doing the ADT and radiation. I've traveled around the world, watched my kids grow, made so many memories with my family.... life is amazing. Side effects are manageable.
Hi Jp, thanks for the words of encouragement. I am trying to stay in the moment and take it a day at a time. Right I now I am hoping that it hasn’t spread to the back of left eye, and that adt is temporary. Can I ask if you still have a sexual relationship?
Hi Jp, Thank you for your positive perspective. Your story gives me hope and I pray that my story will help someone else. Best wishes to you.
That's a tough question. I'm still very happily married but sex has been problematic... lack of libido and ability in my part... in fact this is why I'm on the forum. I'm keen to get back to business, and I will. But while i miss sex, nothing is more valuable than life.
Hi Jp, Thank you for your positive perspective. Your story gives me hope and I pray that my story will help someone else. Best wishes to you.
Also, i want to add...I'm happy to hear that you're thinking about reality. I hope you're not fearing life after. Sure, it's possible you may not have sexual complications like me, but frankly I'm living the best life. Honestly cancer has made me appreciate everything and everyone more. In fact, i literally just returned from a fun, party night in New Orleans. Did I think about cancer... never. Life is awesome
Love reply JP!
have you thought of getting a second opinion? hate to say it but there is no getting back to it. i have been on lupron for 2 years no side effects this is a forever shot, one year chemo and radiation now on Xtandi capsules working to get psa down,it's working.i get it free from maker,my share would have been $2000.talk to your dr's ask questions,STOP LOOKING AT SIDE EFFECTS,YOU GET CARRIED AWAY.
Hey Silverado, Thanks for the candid advice.
Hi. As stated previously, my partner was only diagnosed a few weeks ago. Because he is young (56) and uber fit, the treatment team (in Australia) want him to have everything to give him the best chance possible.
a) have a radical prostectomy (robotic surgery),
b) hormone therapy to eliminate testosterone
3) targeted radiation and
4) chemo (as moved outside the prostate into lymph nodes that they can see).
LOTS of side effects but we have a plan. He will continue with the gym daily as he has been doing since he was 18, meditate daily (I'm a psychologist/hypnotherapist), keep working (works for himself in non physical work), eat even healthier (but continue with dark chocolate as in his words "I don't want life to be bleak"), have lots of fun, look for passion in life (his goal is to learn the guitar - he had just started 12 months ago), be SILLY as this feeds the brain.
Basically pack in as much fun as is humanly possible as we know this helps the brain which in turn will help the body. I know it can look bleak, but have a plan and stick to it.
Don't look for the light at the end of the tunnel. Walk down and turn it on yourself!
Hey Filo, What a sweet uplifting replay. Thank you so much for taking the time to respond. It sounds like you and your partner have an amazing optimistic outlook on all of this. My natural tendency has always been to lean towards the light...lol. Right now I am taking it a day at a time. Much like your partner I have been a fitness guy my whole life. I meditate pretty much regularly and while I don't really diet, I try to eat healthy, but will grab a bag of chips if I want...lol. I don't know what the future will hold and yesterday is the past, so I am just staying in the present and doing what is in front of me. I get up meditate, work a little, hit gym, and connect with friends when schedules allow. I am fortunate enough to have a beautiful husband and we have 1 adult son and 2 teenage daughters. Showing up for them alone can take up a lot of brain power. So I am waiting on cat scan results for the concern behind my left eye, and will most likely begin hormone treatments in a week or so. Best of luck to you both. Sending good healing energy from NYC!
Hi, Sounds like you are doing lots of great things already, but have a look at this article - puts it in a readable and doable package 
Stay calm and flood the brain with healing chemicals!
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