Medical History: 48 years old. I live in the Atlanta Georgia area. I was diagnosed in June, Stage 4, Gleason 10. 1st PSA 104.5. 2 weeks later was at 150. All biopsy samples fully involved with cancer. Lowest sample was 4+5, several 5+4, most 5+5. CT scan showed Lymph nodes involved, but bone scan was clean. 1st doctor (urologist) started Bicalutamide and TrelStar. I quickly moved to Winship Cancer Institute. My Medical Oncologist is switching my to Lupron, Prednisone & Zytiga. Radiation Oncologist suggested / got me approved for Proton Therapy. I start the process for the Proton Therapy on 9/17.
45 treatments over 9 weeks...
Work/ Life history: I am trying to continue working, but having a hard time. I am a Photography Manager for a company that works inside schools, providing yearbook photos, sports team phots, action photos, etc... My job is high stress, and 45-60 hours per week (4:30am - 7/8pm 5 days a week, and some weekend work). My job is fairly physical, involves 7000-12000 steps per day, interacting with 100s of kids a day, and I average about 150 miles of driving per day. The fatigue/hot flashes/side effect are making it impossible to do my job up the the level needed. Work has been very supportive and giving me the time I need for doctors, etc... but I can see where I am not living up to what I need to do. As for only thing else, there is no QOL. I work, go to doctors, and attempt to sleep. Despite the exhaustion, I can’t sleep more than 4-6 hours a night. I have no energy to do anything but work. On weekends, all I do is rest, trying to save up energy for the next week.
So -now the real question: Should I continue to work? How long can I continue to burn candle at both ends, without adding dire consequences? I am dependent on my insurance from work to stay alive and fight this cancer... work is obviously very stressful to begin with, and add in Covid... I have worked for 25 years for this company. I love my job, but feel like it is killing me..
The exhaustion / anxiety / side effects / stress is taking its toll...
I know y’all have been through this! Is it time to concentrate on my health? Will it get better? Is Family Medical Leave the correct option ( can go for 12 weeks)... do I have other options?
Just feeling overwhelmed and lost...
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TrashPanda72
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I feel sad to hear that at this early age you are facing this bad crisis in your life. My heart goes out to you. Its indeed a very difficult time. If I am in your shoes, I will certainly take family medical leave for 12 weeks to see what kind of improvement happens in symptoms. These 12 weeks will provide "cool mind" to re assess the current situation and the measures to be taken to face and adapt to new reality. No Body can predict outcome accurately but so many people get symptom control and go back to work after a few months. Wish you all the best.
These different doctors are burning through a lot of drugs. If I were you I would be thinking in terms of mono-therapy. You are younger as I was when I was diagnosed. Can you give some PSA information that would show progression during these treatments?
With all due respect, that is horrible horrible advice. Double-blind clinical trials (more than one) have proven beyond any doubt that early combined use of Adt with Zytega or chemo extends lives vs adt alone . And not just a little bit. The combo reduced deaths by over 40% versus Adt alone. Be careful not to listen to this advise.:.
It's all a crap shoot. It depends on each individual cancer. I was only pointing out that with each change of doctor they changed the drug. With that change he may have lost the option to return to it. I don't think that is bad advise.
Well, for Magnus the mono therapy approach did a result beyond any expectation of any trial... If I remember well he was on some trials where the trial closed because he was the only one still doing well.... so, yes, the trials have another stats, but I think the majority he would be very happy to have a stat like Magnus does....
Is there a way to reduce your role at the company and take a pay cut, while still feeling like a contributor (and still getting insurance)? My wife managed to do that when she lost energy/stamina due to several health issues.
Even without PC (and treatment-related side effects), many people get overly stressed by their workloads. What I did as a healthy man in my 30s was wearing me down by the time I was a still-healthy 50. The "solution" to that turned out to be: getting fired. My current job pays far less, but stresses me far less.
My older brother (far healthier than I) finally retired in his late 50s because, essentially being on call 24/7, he could not negotiate a reduced workload with his employers. It was THEIR loss, because he was doing the work of two. So maybe you can cut back work without work cutting you back?
The other suggestion is better side effect management, and one thing that has shown to be helpful is low-dose estrogen (patch or gel). Realize, the loss of T in treatment also results in a loss of E, and that can be added back to some degree.
And while you are exhausting yourself at work with lots of walking and work-related activity, that is leaving you with no energy to do what might be beneficial to maintaining muscle mass, which is weight-training or resistance exercises. If you can reserve enough stamina to do a bit of that, it may pay dividends by giving you BACK some energy. (Doing an anti-inflammatory diet might help, too.)
Personally, if I could financially afford to take a 12-week break from work to try and address these issues, and it did not threaten my future employment, I would certainly do it.
Like you, I was diagnosed stage 4 a little over two years ago when I was 48. I found the dx to be incredibly overwhelming and isolating.
It took me several months to come to terms with my new reality. I’m not sure if my side effects got better or if I just got used to them. I never took the time off work, maybe it would have helped me. My productivity went way down, but ultimately I was able to get my head back in the game.
This is probably a crunch time for you with school being back in session. I wish I could give you some good advice, this pca thing is a real b*tch. Someday soon you’ll learn how to relax again. The best I can say is hang in there man.
StayPositive1 is right on target, TrashPanda. I was diagnosed Stage 4 for my 49th birthday almost exactly 4 years ago (not my favorite gift). Not to sound overly-philosophical, but APCa is a constant journey that requires attention, thought, and energy - the very things that are initially diminished by the sudden introduction of Lupron and Zytiga. This is going to be a crazy time for you as adjust the TrashPanda machine so that you can make the best decisions, even the simple ones - e.g., when to take your meds to minimize the effects.
Believe it or not, it sounds like you are doing well for now - even if it is on some sort of autopilot, your ability to grind on in "crunch time" is a good sign. The fact that you can still outpace the average American 2 to 3 times a day bodes well, believe it or not.
Honestly? I think if we have time to ponder QoL, it is an indicator we can continue with other things. My understanding of this (after the initial phase that you are still in) has better prepared me for changes in my condition and treatments. As to that, listen to Tall Allen and check into all treatment possibilities.
As a final aside: Let me say that, to all of us parents with kids in school, you are IMPORTANT. The smart among us realized looong that we can't get a decent photo of our so-loved-but-so-frustrating child. You make the most of even the most disheveled, unprepared little monster.
The work of your peers is on many walls in my home and so well marks our family's walk through the years, and I am thankful. - Joe M.
If your work is giving you a sense of meaning and purpose, I think you should work until you can't. Our world tends to get smaller when we are sick - you are more than just your disease.
With your diagnosis, I think you should look into brachy boost therapy rather than protons. It has the highest cure rate for your diagnosis. It would involve external beam radiation to the entire pelvic lymph node area, a brachytherapy boost to the prostate, and 2-3 years of ADT. In Atlanta, Radiotherapy Centers of Georgia specialize in this therapy.
This is great advise. I considered proton therapy And found it to be almost like a cult. They have to scare people into using their expensive machines that have never proven better and other treatments.
Only good thing about that proton beam cult is the balloon to minimize hitting the bladder. I dont know why traditional radiation does not do this trick. I have bladder damage from radiation. I have been in the Gleason 8 battle for 17 years.
My damage happened 10 years ago at Kaiser when the director whimsically decided to not only hit the pubic bone lesion, but hit the prorate bed area with a lite salvage type radiation treatment. That prostate area was a mistake. There was no cancer there. I only needed to hit the cancerous spot on the pubic bone. It is now affecting the chemo I am doing today. I started getting a bleeding bladder after 3 chemo rounds and had to stop. Clots sent me to emergency 3 times. Restarted chemo recently after bleeding stopped and am using lower chemo doses. This damage will affect my survival.
Sorry to hear of your bladder damage resulting from traditional radiation at Kaiser, your example illustrates why proton patients choose protons in order to minimize radiation exposure to healthy tissues.
That "balloon" you reference is not used to protect the bladder, it's used to protect the rectum. A full bladder in advance of proton treatment and volume verified by ultrasound is used to minimize bladder exposure.
Why is it that those, having no experience with protons, find the need to disparage that form of treatment, often using erroneous information?
I also have rectal damage, but bleeding during chemo is not excessive. Colonoscopy confirmed an area that has radiation damage. Never get radiation at Kaiser.
Sorry to hear that. Having had protons I have no rectal or bladder damage. Sadly Kaiser does not offer protons, nor will allow members to go out of network for it. I've known a number of Kaiser patients that tried but all were denied out of network proton treatment.
Hope you are able to deal with the bladder/rectal issues somehow. Best of luck!
I was living in scal and looked at loma linda proton treatment as a cash treatment. Was too much money. Should have come up with the money and spent it. That decision to let Kaiser do it shortened my life by impacting chemo 10 years later. I was not as smart as I am today looking back. I moved to NCAL and switched to medicare and now get the best for any treatments, like Stanford or UC Davis. Kaiser is a death trap.
Of course, primary radiation (with an intact prostate) is an entirely different thing from salvage radiation. Salvage has much higher rates of urinary injury. The balloon protects the rectum (maybe), not the bladder. To protect the bladder, a full bladder is required during planning and during each treatment.
Interesting opinion Schwan, having been to 2 proton centers and treated at both, I found no such scare tactics used ever. Nor has the hundreds of men available for direct contact through reference lists of former proton patients.
I had a similar experience with Loma Linda. They kept talking about the Bragg Peak as if it were the holy grail, and the one published result they did have at the time was less than impressive. In fairness, proton, like all other radiation delivery systems, has gotten a lot better since then. My issue is with doctors who don't reveal the downsides. I find this to be especially true of doctors who practice focal ablation.
Yes it has improved, Rossi at CA proton in San Diego has the best available, however Loma Linda did my primary treatment, and I had no lasting side effects.
Lots of things published about the Bragg Peak now, as well as protons.
Rossi performed salvage protons for me on some nodes, without issue also. Conventional radiation, including I believe with your treating Dr, Chris King, as well as others in LA could not perform the same without possible damage.
My radiation oncologist spoke to me about all 3 types - traditional, Proton, and brachytherapy - He does use all 3 in different patient. He said the Proton Therapy had the possibility of less collateral damage. He also said, if denied coverage, that traditional external beam was the current standard of care. No scare tactics used. He said that with the spread through the lymph nodes, that the radiation was the 1st step. All along the way I was given the options and choices, without pressure. I basically said as aggressive and advances as possible.
When I originally met with the entire team at Winship, they all seemed in agreement that Radical Prostatectomy was not really an option, based on the spread of the cancer. Basically they want to kill it off as much as possible before cutting into me.
I have reached out to Radiotherapy Clinics. I have decided to step back from work and do FMLA. My few hours of feeling normal a day are all being put into work... I have decided to put those hours into my health and family..
Feel for you Panda. Is there any way you can negotiate a 12 week leave of absence? The stress, driving so many miles, not getting much sleep and being understandably preoccupied with your PCa, all add up to heightened dangers that you don't need right now.
The suggestion to investigate radiation with brachy boost is an excellent one, that I suggest you investigate immediately.
TP72: I strongly urge you to look into Brachy + IMRT as suggested by TA. I had a similar diagnosis as yours (T4N1M0 +SV), and had the procedure with good results so far (see profile).
You may not want to do it now while you can still do some level of work, but more physical limitations in the future with advancing prostate cancer may lead you to consider your current family income situation vs. your situation after possibly going onto Social Security Disablity Income (SSDI). Here's a link to several past discussions of USA men here who posted/replied about their experiences with getting SSDI.
You may also want to do some preliminary "what-if" looking around at future health insurance coverage options you might consider by exploring this site.
Some people may choose to seek the help of specialist attorney/agent/broker for some of this. It's not required, but may be helpful when the time comes.
Updating Family & Estate Planning & Medical Directives might be something to consider at your relative leisure over the next few years ahead of need, rather than later.
"Organizing" your records and wishes and other stuff a little at a time rather than leaving stuff hanging can be helpful, too. Here's a link to just one of several tools that can help with that, with a typical table of contents. There are others.
1. I'm sorry that you are being hit with this at such a young age. I, like others on this site, have Stage 4 PCa. But most of us are older than you. In my case, that makes it a bit easier to be philosophical about the QOL effects and potential LOL implications.
2. Even though your job is obviously long-hours and stressful, I agree with others who have suggested that you keep working, perhaps with reduced hours if that can be arranged. I and many others have found that staying busy makes things better rather than worse while going through most Stage 4 PCa treatments.
3. Lupron plus Zytiga and prednisone is fairly standard initial treatment for someone with your diagnosis. As of a year or so ago, I thought it was hard to get insurance approval for Zytiga without "distant mets", but that has probably changed.
4. IMO, pay particular attention to Tall_Allen's treatment recommendations.
I am a little older than you and was diagnosed last year July. Sorry your getting hit with all the side effects but I am on the same Standard of Care and finished radiation (not proton) in March. Lupron, Zytiga and Pred. I have continued to work the whole time but my job is in my home but is also very stressful. When first diagnosed I wanted to be done with it and am self-employed. I almost self destructed at that point but didn't I dropped some stressful customers, but otherwise didn't change much and I am.glad now I didn't.
There's a lot going on for you "now". The treatment load will decrease over time. Dr appts, blood tests should be less often, hopefully the treatments will knock down your cancer and give you time to think once the initial treatment plan is determined. Your very active at work and exercise is important for side effects so the fact your getting them despite all of those steps tells me maybe not for you. It works for mebasnfar as fati and hot flashes but I have others that matter very little to me. 12 weeks off during radiation if it has no down sides seems like a no brainer for me so it makes me think there are downsides. I wish you the best.
Watch your weight gain once you start Lupron. If you stop work plan on staying active, weights are good as you will lose muscle mass and have to fight a growing mid section. Try to stay positive. I hope you have some support nearby, of course you will get it here, but I suspect your hospital has a group as well.
This is all my perspective and opinion hope something I said helps.
I don't know how you arrived at the decision to have proton therapy.
There is good information that radiotherapy with photons (IMRT or similar) plus a brachytherapy boost and ADT could offer a good control of the cancer for years. This treatment has a specific PC survival rate of 94% at 5 years and distant metastases free survival around 85-90% at 4 years.
cancer is extremely aggressive, and clinical outcomes
are largely unknown because
of its rarity. This study provides benchmark clinical
outcome information for patients with Gleason score 10
prostate cancer with data
extracted from a large multi institutional database.
Although this disease follows an aggressive course, most patients are free of disease at 5 years, and there may be benefits to treatment with radiation therapy and brachytherapy""
IMHO you should consult with other RO about treatment with EBRT+BBT instead of proton therapy. There is not evidence of a benefit when using protons vs using photons in localized prostate cancer. Your cancer is not longer localized since lymph nodes are involved.
I’m really sorry to read about your diagnosis at such a young age. I was 68 when I was diagnosed with Gleason 5+4 and 10 invaded pelvic nodes in 2017. I pushed for Lupron +Zytiga, and started Feb 2018 for 2 years of ADT+Z. After 6 months to shrink the prostate I had HDR Brachy boost followed by IMRT *(tomotherapy) followed by WPR (45 gy to each lymph node) followed by an extra 15 gy to each invaded node. So far so good - I’ve been off ADT for 6 months, psa < 0.015, testosterone is a bit over 100, hoping the PSA will hold undetectable as T hopefully returns.
The HDR brachy boost is something to look into, you can have it with protons if you decide to stick with that therapy. I believe HDR brachy boost greatly reduces chances of a recurrence in the Prostate after RT. The other question seems to be whether protons can treat the lymph nodes as well as IMRT does.
1. I liked Tall Allen’s reply. Also from reading this site SBRT seems just as effective as proton therapy. Proton therapy is more expensive as the machine is more expensive! Consider the brachytherapy boost.
2. I have been on Zytiga prednisone / Zytitiga dexamethasone for over 30 months along with 3 month shots of Zoladex. A little more tired but I put that down to lack of testosterone. So minimal side effects. I Still play soccer, work, hike golf etc.
NOT exhausted. Side effects vary from person to person but I think being younger (56 when I was diagnosed ) has helped keep my lifestyle similar and QOL similar.
I see other people on this site still biking long distances, some going to the gym a lot and others still running marathons! I also see some people drop Zytiga dose to 500mg with a ‘ fatty’ breakfast and that can reduce side effects.
A tough pathway you are following, TP72. Being as how it is your LIFE that is at stake here, a layering of priorities is called for. FMLA leave will protect your job while relieving a major stressor. We all are aware of the negative impact of stress on health and on resistance to disease. We do not want "he clocked in every day" as our epitaph. Clear thinking and good luck.
Ugh. So sorry tor hear. Only thing I can say is that everything leading up to your diagnosis needs to be re-examined. For me cancer was a re-boot. I dropped everything (even though I wasn't financially stable) and started over. How I treated my wife and daughter, what I put in my body, exercise, meditation, how I dealt with stress, etc. Based on my diagnosis, Gleason 9, major lymph invasion, I knew I needed to make drastic changes And I did. I was diagnosed in 2016. As of today, I have been off all meds since last December. My PSA is slowly creeping up. Its at .48. I am still castrate sensitive and I have a slew of treatment options. Bottom line: Break open. Live your life the way you want to live it. Happy. Stress free. Love. Clean up you diet and exercise. Become self aware. You are now in a fight, but it is winnable. Good luck.
I second recommendation from tall Allen with regard to radiotherapy clinics of georgia. I was diagnosed age fifty and had durable remission if almost twenty years. Great group with huge database of cases to base very specific treatment plan for tour specific case numbers
I am now 48, diagnosed at 46. My PSA wasn't quite as high as yours, I had lymph node involvement, but similar to you my bone scans were clear. I chose to have RP after a few months of Lupron. Things looked good for ~1 year. Then my PSA started to rise again (still only lymph node involvement, nothing visible in bone scans).
I started Lupron, Prednisone, and Zytiga. After PSA and Testosterone dropped to zero, I completed 35 rounds of radiation (Feb - March this year). I continued to work this entire time (although my hours dropped from 70 - 80 to about 40). In addition, I continued to go to the gym every day (until it got shut down for COVID-19).
For me, I needed the work to keep my mind off of treatment. I love my job and taking that away from me would have made dealing with the treatment more difficult. That being said, others that I know took the time off and they are very happy that they did it. I believe it is a very personal decision. Hopefully your company will be understanding and give you flexibility to find something that works for both sides, since it sounds like you are in a similar situation.
Hey Panda, I was 46 when dx, 54 now, Gleason 9 4+5. I am so sorry to hear you have this at such a young age.
I did a trial both chemo and adt for 6 months then prostatectomy. Question, are they scheduling you for a prostatectomy?
I worked for 4 years during bouts of chemo, Ive done 21, and adt, then I quit working. Not to get too personal but do you have some long term disability? The decision to quit work is a deeply personal one, different story for different guys.
Hope you have support, you have been hit with this horrible news just in June. Maybe you need sometime to digest all, only you know what’s best for you . 🙏
Brookwood Medical Center in Birmingham has the Cyberknife SBRT Dr Fred Dumas is the guy to discuss this with you. He took over an hour to describe his process that takes only 5 days. He can give you another option.
So sorry for you! My husband has a Gleason 9, and had two bonescans in June 2019 and July 2020 showing no bonemets at all. But a Ga68 psma petscan two weeks before the second bonescan indicated one met on the border of the C7 cervical. So the treatment options are different: they will do SBRT in 5 sessions to remove this met. The PSA started to increase quickly from 0.31 in April 28th to 0.78 in September 9th. It was a sign that something is happening.
Maybe you can also ask for a Ga68 psma petscan to be sure that the radiotherapy you'll get will irradiate all mets.
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