Hello all, my first post.: I have been... - Prostate Cancer N...

Prostate Cancer Network

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Hello all, my first post.

soabguy
soabguy

I have been observing this site and all the great people and advice (stats in bio) that is here for quite some time, but finally decided to ask for some support and advice as to dealing with this terrible diagnosis that we all share. I am about to receive my first 1 month shot of Eligard this afternoon, with Feb. 23 the day when I will receive HDR BBT in a nearby center. This will be followed by 15 sessions of EBRT locally, starting on March 15. This has been such an emotional rollercoaster to get to this stage, and I am so tired - it seems as though depression has been a frequent companion for a long time. I am getting cold feet now and am wondering if I have made the right choice (after a long time researching and soul searching), or if I should abandon ship and ask for surgery. Anyone else out there go through this thought process? Just hoping to get some perspective from some of my comrades and maybe some tips as to how to manage this next part of the road, and how I can become more positive in my attitude - I know I must be proactive and try to see the outcome as being successful and not just feel sorry for myself. Thanks again to everyone out there for providing all the information that the medical community seems to think not important. God bless you all...

Stewart

29 Replies

You probably don't want advice from a chick but here I am. What you are feeling is normal. This is a horrible disease. My husband jumped immediately into wanting surgery, opposite of you, and sometimes I wish he didn't do that. It's SO easy to second guess yourself and worry about outcomes and obsess over your choice. What I have found is that people on the internet tend to push and favor their treatment. Just because it worked for them doesn't mean it's right for you. We all have different needs and different genetic compositions. You need to choose what seems right and then just move forward. Each treatment has positives and negatives and at this point I don't think any of them are foolproof! I repeat none are foolproof. Otherwise this forum would not exist. If it would help you though, to seek a second opinion, do so for your own peace of mind, but once you decide, just move forward.

Also, the hormones are going to make you depressed. Ask for an antidepressant if you need it and don't be ashamed about it.

This is a scary diagnosis, but there are people on this board living for a long time with PCa. You can do this. We are behind you.

CHPA
CHPA in reply to fluffyfur

Well said. People like confirmation they made the right choice and will tend to defend their position. What’s more, most on here are not professionals. Learned patients to be sure but not doctors.

But bottom line is you have a scary but survivable decease and it is okay to be worried and even depressed. I hate making choices on a topic for which I’m not an expert. Yet here you are. You will make it through which is the good news. There will be some changes and you just love with that. My numbers were worse than yours. I chose surgery. No regrets at all.

SeosamhM
SeosamhM in reply to fluffyfur

Welcome (?) and thanks for sharing your journey, Soab! Do not listen to Fluffy's self-deprecation - my wife actively helps me navigate this unwelcome voyage and this is GREAT advice and observations from beginning to end. The choices I faced - heck, face - felt unfair to me even as my innate, hormonally-driven confidence I'd been (apparently) depending on as a male my whole life was drained by ADT.

You face big decisions, but you have hope, too: "CT whole body scan and Bone scan completed Dec./2020, no evidence of spread outside the prostate." Once you come to a treatment decision, my best advice is not to focus on the treatment, oddly enough....I've strongly felt that I just showed up for most of this... Focus on all of the potential recovery paths from the treatment that truly empower - nutrition, physical-mental exercise, therapy groups, etc.

Remember that you are still you, brother...and, to echo Fluffy...we are behind you.

soabguy
soabguy in reply to SeosamhM

SeosamhM, I appreciate the encouragement. Not looking forward to the Eligard kicking in but I guess that is part of the whole journey. Best to you, and will be dropping in from time to time...

soabguy
soabguy in reply to fluffyfur

Thank You for the kind words and helpful thoughts. It took a long time to get to this point, but I do feel positive about the treatment I have chosen and believe that I do have a great chance at many more years to enjoy my family, friends, and the things I enjoy doing. Life will probably never be the same, but have actually learned through this experience to appreciate the things I always took for granted. I do wish you and your husband well, and btw - you sound like a pretty smart chick!

I am a retired engineer, consequently, I give more credit to numbers than professional opinions. I read your bio and was puzzeled enough by your testosterone numbers. From April to October they have run the distance from the lowest percentiles to the highest ones, that is for age (10.5 -> 24.4). If this was not a test lab error or a typo, then some explanation is pending here. As to your MRI the situation may be easier. You didn't have a multi-parametric MRI that could lead to a PIRADS assesment, but a simple one used during RT planning. Yet, 6-7 months between imaging for planing and actual radiotherapy is not the best that can happen to you. I guess that your RO will not be keen to repeat the imaging and will probably say that there is no problem whatsoever. All in all, my take is that you are not being offered the best available medical care. But, do not forget, I am only a retired engineer.

soabguy
soabguy in reply to Justfor_

Justfor, yes I am puzzled as well by the wide variance in testosterone. Will definitely have to ask RO about that one. The length of time between MRI and treatment is due to six month waiting list for BBT, and of course covid not helping. The health care system is quite different in Canada, choices not so readily available as provincial insurance dictates that you stay in province if treatment is available unless you can afford to pay out of pocket to go elsewhere. For me, the cost of treatment elsewhere is unaffordable. I do believe that the standard of care might not be quite the same as larger centers in the States, but have to believe that I am getting the best available to me. Numbers are good, and retired engineers have many years of wisdom! Thanks for the reply, it is appreciated.

You could have surgery with immediate (adjuvant) EBRT, but this has a high incidence of side effects (surgery has higher risk of incontinence and impotence, and aRT has worse side effects than primary RT). The outcomes of RP+aRT and BBT haven't been directly compared, but judging by the following analysis, the outcomes of BBT appear to be better:

prostatecancer.news/2018/11...

maley2711
maley2711 in reply to Tall_Allen

It appears for men with Gleason 9-10, either max RT or max RP give great hope , at least mortality-wise, for 5 ye success?

Tall_Allen
Tall_Allen in reply to maley2711

No, you somehow misread that. What Kishan's comparative numbers show is that 5-year prostate-cancer mortality is twice as high with MaxRP.

maley2711
maley2711 in reply to Tall_Allen

" outcomes of BBT appear to be better:

prostatecancer.news/2018/11... " ???

Tall_Allen
Tall_Allen in reply to maley2711

Sorry - I meant MaxRP - corrected

maley2711
maley2711 in reply to Tall_Allen

Thanks Allen...always reluctant to second -guess you!!

maley2711
maley2711 in reply to Tall_Allen

On 2nd thought, you meant max RT or max RP has higher 5 yr cancer-specific mortality??? I'm still unsure.....guess I could reread!!

maley2711
maley2711 in reply to Tall_Allen

The 1st study you reviewed concluded...

The 5-year PCSM was:

2% for MaxRT

22% for any RP (significantly higher than MaxRT)

4% for RP+adjuvant EBRT (not significantly different from MaxRT)

27% for RP+adjuvant ADT (significantly higher than MaxRT)

10% for MaxRP (not significantly different from MaxRT)

They computed a 76% chance ("plausibility index") that the PCSM was plausibly the same for MaxRT vs. MaxRP.

The numbers you showed for Kishan....

5-year % PCSM

RP (any): 12%

BBT: 3%

Adjusted PCSM Hazard Ratio compared to BBT:

RP+ADT: 3.2

RP+EBRT: 2.0

Kishan is comparing (1) BBT + ADT (2) RP + ADT (no EBRT) (3) RP + EBRT(no ADT) ? Does he provide RP + EBRT + ADT numbers? I'm just looking at your table..not entire Kishan report.

Interesting that for the Tilki study, 10% mortality for Max RP deemed equal to 2% for max RT. So, a complication...for men who receive initial BBT, we don't know breakdown of men with more or fewer positive lymph nodes??? Just assume same numbers as for men who did RP and had LN analysis? I don't see how 10% is same as 2%...unless may BBT patients assume to be low burden of positive lymph nodes?

I assume that, in all these studies, some men received additional EBRT or ADT when recurrence or imaging showed need for additional treatment?

In any event ...for Gleason 9-10, the studies show 2-3% cancer specific mortality at 5 years for BBT......that makes a diagnosis for 9-10 much less disastrous than I would have feared? If I can overlook the possibility/likelihood of horrible treatment SEs with combined BBT and ADT!!!

Tall_Allen
Tall_Allen in reply to maley2711

All good questions - I really don't have time now to answer. Assume I know what I'm talking about for now.

soabguy
soabguy in reply to Tall_Allen

Thanks Tall Allen, so much great information - I always look forward to your timely responses and pertinent data!

Hi Stewart, Welcome to the Group. I’m not a doctor so I can’t offer any medical advice. What I can offer is my own experience (so far) with being diagnosed and treated and the impact on my life. The diagnosis process was difficult for me and it’s true what they say ..... Urologists generally recommend surgery, Radiation Oncologists recommend radiation etc. I found that getting support from Malecare was and remains invaluable. I did my best to avoid Dr. Google, though it is hard !

I decided that I would look at all the knowable pros and cons of each treatment choice available and then be very honest with myself as to which “hell” I felt that I could live with. I decided that I would opt for External Beam Radiation Therapy, which turned out to be a relief as that’s all that was offered as a potential curative option (I live in Ireland and Brachytherapy wasn’t an option). I was offered surgery but was told that I’d need radiation and Androgen Deprivation Therapy (ADT) also.

In the couple of weeks before I had to make my decision I did keep changing my mind, I was scared, I never had to make (in my mind) such a life or death decision before.

So anxiety rained for a while before the depression set in, and this was before I started ADT!! It took me a while to realise that I was grieving the loss of what my life had been and wouldn’t now continue to be (that of course was very arrogant of me, how could I know the future in advance!)

It was also very normal and very human, and I needed to give my self (spelling is deliberate and an accurate expression of need) a break.

I needed to be kind to my self as I was starting a “life curveball” of an unwelcome journey with an unknowable (in advance) outcome. I could read all of the statistical analyses of all treatment options (thankfully I didn’t) but what to do?

Work out what treatment side effects that I was prepared to tolerate in conjunction with the best medical advice available to me, make the treatment decisions accordingly. Then give my self permission to be wrong, but hope for the best.

Giving me permission to be wrong was the hardest part of the diagnosis process.

The external beam radiation wasn’t too bad, having an empty bowel and full bladder each day was a bit of a challenge but achievable.

ADT hasn’t been easy, I’m on Zoladex (no choice but it achieves the same results as Eligard) for nearly 2 years (out of 3, for very high risk PCa) with injections every 12 weeks. I have experienced most of the possible side effects, some dissipated after a while. I’m left with significant fatigue and hot flushes plus headaches but have developed coping skills. I had ceiling fans installed and they really help with the hot flushes in less than 2 minutes usually.

I still suffer anxiety (but had that before cancer) and low mood but as I’m living through Covid19 lockdown number 3 it’s difficult to attribute blame!!

The one thing that I constantly remind myself to do is to live today only, today and let both the future and the past wait for tomorrow ... or the next day or week! Living one day at a time is achievable.

Hugh

maley2711
maley2711 in reply to Aodh

IMHO, excellent perspective and advice!

soabguy
soabguy in reply to Aodh

Awesome reply, tried to avoid Dr. Google myself but curiosity and fear drove me there many times. Thanks for the reply, I will use your wise perspective in my story!

I'm sure that most of us have felt at some point whether we have made the right treatment choice. Only time will tell.

What we all need to do is research, ask questions, find a really good/experienced medical team, participate in support groups like this one, and be your own best advocate.

A little information would help put your situation into perspective. What is your age, weight, general health, etc. I do think you are on right track but you might feel better if your situation fits the chosen treatment.

soabguy
soabguy in reply to Magnus1964

Magnus, I am 63 and in pretty good shape generally - considering I have not always been the picture of living a healthy lifestyle. This experience has changed the way I look at things and have changed my diet and although always active, have started to walk a few miles a day (even jogging part way!) and feel better than I have for quite some time. I did lose quite a bit of weight since dx, and am down to around 145 lbs. now. Have also just recently took up a weight training program...

Magnus1964
Magnus1964 in reply to soabguy

By your description all treatments are on the table. Your not overweight or frail. I have often thought if I made the right decisions along the way, but everything worked out to the best. I went for surgery but it may not be right for everyone, and I might not recommend it for you. In the end you have to go with what feels right for you. I would hate to make a recommendation that didn't work out.

73 y.o. with Lymphoma LNH and many Acute Chronic Diseases.

My Immune System is VERY low.

That gave me a Severe Physical Limitation. 2 walks of 0.75 km with a walker, then my Pulmonary Emphesyma Gold Grade 3 kick in and I have to rest and catch my breath.

1994 Had a work accident followed by Discoidectomy L4-L5 and Permanent Acute Lumbalgy, on Fentanyl 87 mcg/hr patches and recently on CBD and later on THC.

2004 Blood Tests showed a Acute Chronic Renal Insufficency Stade 3, which is treated as Wait & Watch ,with Blood Tests every 4 to 6 months. Stable so far.

*Prostate-specific antigen (PSA)*

*Pré-Hormonothérapie*

4.23μg/L (2001/07/18), 2.2 μg/L (2002/07/23), 1.8 μg/L (2006/07/04), 2.2 μg/L (2008/09/22), 2.4 μg/L (2009/05/20), 2.05 μg/L (2011/08/26), 2.25 μg/L (2012/08/13), 2.05 μg/L (2013/08/06), 2.77 μg/L (2014/07/28), 3.84 μg/L (2015/07/06), 1.97 μg/L (2016/06/30), 3.89 μg/L (2017/06/13), 6.8 μg/L (2019/09/10), 11.7 μg/L (2019/10/28), 13.7 μg/L (2020/01/08), 16.7μg/L (2020/03/02), 20.4 μg/L (2020/04/06),

*Per-Hormonothérapie*

1.76 μg/L (2020/05/04), 8.58μg/L (2020/05/27), 0.18 μg/L (2020/07/29),

*Post-Hormonothérapie*

0.03 μg/L (2020/09/15), 0.01 μg/L (2020/12/15), 0.01 μg/L (2021/02/11)

*Testostérone*

*Pré-Hormonothérapie*

10.30nmol/L - 294.19ng/dL (2020/05/04), 15.2nmol/L - 438.04ng/dL (2020/05/27),

*Per-Hormonothérapie*

< 0.2nmol/L - < 5.768ng/dL (2020/07/29),

*Post-Hormonothérapie*

< 0.2nmol/L - < 5.768ng/dL (2020/09/15), 0.3nmol/L - 8.6455ng/dL (2020/12/15), 0.4nmol/L - 11.5214ng/dL (2021/02/11)

Prostate went from 24.7cc to 45.86cc.

2020 March 3rd I had 6 cores out of 12 positive on the right side at 85% G4, then on a Special pre-RT Scan they found multiple tumors on both sides.

I was in the Ufavorable Intermediate Risk group with a G(4+3=7) Grade 3.

I got and injection of Eligard 45mg/24weeks on April 4th 2020 that was screw-up so I did not get the benefit of Pre-RT 8 weeks of ADT. And on Casodex 50mg/I.D. X 30 days.

So I have been on Lupron Depot 22.5mg/12weeks X 2 from 2020 May 31st &2020 Aug 24th to 2020 Nov 16th and on

VMAT-RT 3Gy X 20Fx in June 8th 2020 to July 7th 2020 and my

PSA = 0.01µg/L and my

Testosterone = 0.4nmol/L or 0.1154µg/L or 115.368ng/L or 11.5368ng/dL

On Feb 11th 2021.

Next tests on March 1st 2021 and March 11th 2021.

And a second Cystoscopy on March 3rd 2021. First one on Nov 16th 2020 showed a lot of strictures, some were relatively bigger( made the Cystoscopy very painfull).

On Oct. 2020 I started a Severe Depression and was put on Sertraline 200mg/ID plus R/V with a specialist psychologist who deals only on patients with 2 cancers and other chronic diseases.

Except for the Heat Flashes and B Size Cup Breast I feel not too bad considering my other health problems. When I look at other patients who went for RP and all the Secondary Effects they have, I am really happy about my choice which in fact was my RO decision du to all my other Health Problems and my age. In Quebec, Canada unless special exceptions they do not to RP since it involves Anaesthesia and a Head-down position which is VERY hard for the breathing..

We need to keep FIGHTING against that awfull disease.

I have 1 daughter and 4 sons. 1 grand-son and 1 grand-daughter and I want to see them growing. I will SURVIVE!!!

Deciding what treatment to go with was difficult for me as it seems to be for everyone of us, but fortunately our disease is not like an appendectomy where you have to act fast and there aren't too many other options. Everyone's circumstances are different, not only as it relates directly to the clinical studies but to many other things about yourself and life that will be impacted by the decision. So you weigh it all in and you go with the best choice you come up with, in no small way supporting your own hunches which is wisdom from within, as most other wisdom you get from others, including your doctors comes from outside. You just have to accept it as your lot, be grateful you made it this far, how many other people have lost a worse battle even younger. My wife always tells me "The good thing about the bad is that it's not the worst." I try to always remind myself of that at moment of doubt or self pity. I had a friend many years ago that recommended reading Viktor Frankl's book "Man's Search for Meaning" as therapy for a bout of depression. When I read the preface I thought my friend was crazy, but then I realized that comparing my life to that of survivors of the Nazi holocaust was not as crazy as I first thought. I hope these words are of encouragement, as that's how they are meant.

soabguy
soabguy in reply to EaNa

EaNa, thank you for the thoughtful reply. I have read your post on making a decision, and am wondering if you have come to any conclusion as to your course yet?

EaNa
EaNa in reply to soabguy

Soabguy, I spent about 3 months researching, talking to urologists, surgeons, and oncologists familiar with prostate cancer treatment within my Health Maintenance Organization (HMO) and I decided that the doctors that I spoke with there inspired enough confidence that I didn't consult outside. So working under that limitation I basically had 2 options, Robotic Assisted Laparoscopic Prostatectomy or External Beam Radiation Therapy with hormones and Brachytherapy for additional "effectiveness." I'd never had surgery so this scared me a bit but I was more concerned about side effects of radiation and hormones, and if Brachytherapy was also thrown in then I would have those side effects as well. There was also the matter of impatience to get it done and over, rather than prolonging the treatment over several months. The surgeon inspired confidence and I decided to go with that. My surgery was 2 months ago and I'm doing fine, recovery has been quick, I'm age 64 and in fairly good health so this is what I expected. I never felt that I would have a problem with incontinence and that hunch turned out to be correct. As far as ED it's no worse than it was before the surgery and even if it were I had decided that that would not be my first priority. This is where the choice gets very personalized. I still haven't had my first post-op PSA check so I don't know how it turned out clinically, but as far as recovery I couldn't be happier. The toughest part were the first 3 days having the catheter, and the hardest part of it all was totally unexpected, constipation, but I may have been able to avoid that if I had anticipated it and taken more evasive action up front.

Maybe the most important thing I can share with you is that initially, when I first started researching the options I thought I could come to a decision based only on reports, statistics, and logic, but when I looked at the long term results, say 10 years out, they would be about the same either way, so then instead of focusing on the numbers and reports I paid more attention to the convenience or inconvenience of either choice and put a lot of weight on hunches, if you listen to it your body will tell you what it wants. This is where it all gets a little hokey-pokey but after 3 months of research and understanding that a flip of a coin would be just as good as going by any kind of logic, I believe that a hunch should be more reliable than a coin. Once I came to that conclusion, the decision was easy, and a great weight was taken off my shoulders, because we are not experts, and even the experts will give you different opinions, so how is a mere mortal to decide? I did the best I could with the information I had and I could do no more. It's like having 50 / 50 split in the Senate, your hunches are the tie breaker. Do your research so you don't short yourself there, when you're tired and confused remember what I said, listen to your hunches, make your decision, be happy, and move forward.

Hi Friend.I haven't read all the previous replies closely so I may be giving you a repeat. Please get a second opinion. It may confirm the treatment you have been given but It could differ. It's worth the cost, regardless. Depending on where you live you could choose M D Anderson, Sloan-Kettering, Dana-Farber, Mayo. or several others Just give yourself the peace of mind of knowing you're following the right path. I waited too long and after radiation to my pelvic bed it was discovered my metastases were in my lungs. Oops, missed :(

God speed!

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