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Worried over decision

Steve1961
Posts: 216
Joined: Dec 2017

i serioudly don’t think ,my RO was looking after my best interested ...that’s my fsult ..now that I have done all treatments 25 EBR and hdr brachytherapy..I’m physically felling s bit better ....but emotionally a wreck ...very depressed..one haunting dilemnac...lymph node damn it ..my urgeon was going to take a dissection ..which. maybe been therapeutic as well as curative ..even though the chsnce were minimal ...so now what I radiated the prostate ok can’t go back what if in years it shows up in the nodes ..then what ..hormone treatments for  life ?.?..I don’t think that area can be reradiated and it’s cripling me bad ...I am going to ask him but I know what he will say ..don’t worry snout that now ..how can I not ..I’m pretty sure that the same areas can’t be radiated twice too dangerous .

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3250
Joined: May 2012

Steve, I do not recall your medical history with PCa. What lymph node ? HOW would anyone know it to be positive for PCa, which is what you seem to be saying (IF it is postive).

I think what you need to have addressed first is your emotional situation.  Lamenting your first-line choice can change nothing and is not fair to yourself, or probably the doctor.  To say that he was not concerned for your welfare is a serious thing. What proof do you have of that ? Sometimes the best coices and the best doctors simply fail, through no fault of their's.

I've been ejected out of a car window, run over on the street, two years' rehab learning to walk again.  Severe spinal deformities for life, inoperable. When I have X-rays the techs (more than once over the years) come out and ask to talk with me, sayng stuff like "I've never seen any films like yours before." 

Then, advanced lymphoma, a strain with a high relapse probability, and Stage II PCa.  But I wake up every day thankful.  I am no hero or special person, far from it.  Just an average Joe.

People ask me, "How did you get through all of that?"  I reply: "I didn't know I had a choice."

Try to get over this my brother.

Be Winnie-the-Pooh, not Eeyore.

Listen to this country music song, which is sort of my theme, although I have others also. It might help a little.  The lyrics are beautiful. He sings of hope, althought this singer died of alcoholism at 34 years of age. But hope is always a good thing.   

To open it, Highlight the link. Then RIGHT CLICK. Then press "Go to....."

https://www.google.com/search?q=no+stranger+to+the+rain&oq=no+stranger+to+the+rain&aqs=chrome..69i57.9695j0j7&sourceid=chrome&ie=UTF-8

Steve1961
Posts: 216
Joined: Dec 2017

Thanks I’m trying too.i do know he wasnt after my best interest and I am upset ..when he dismissed the decifer test noting high risk ..he had his reasons why . 

when I told him it could be worse now maybe 4+4  instsed of 3+4 he said that happens slot  he wasn’t worried ..when I asked him that could mean node involvmrnt  said 5 % chsnce ..when I asked about beIng young and secondary cancers he said chances of getting secondary cancers is like dying on the table ..it’s my own fault I didmy trust hi and now I have to live with the fear of secondary cancers and possible node involbmrnt ...when I could hsve chose surgery and known it all ..now it’s hsinging  me and I’m depressed over it 

backagain
Posts: 7
Joined: Jul 2011

I am sorry for your diagnosis but there is always hope and good outcomes. At age 52 I had surgery, gleason of 9, radiation and have been on hormone treatment. Now at age 66, its been recommended that I stop hormone treatments. Being that I have been able to work around side effects, its actually making me a bit nervous stopping the hormones. I hope the best for you and hope you have the same quality of life that I have experienced or better.

Clevelandguy
Posts: 426
Joined: Jun 2015

Hi Steve,

From what it sounds like is that you had radiation which I hope will be sucessful in getting rid of your cancer.  Your doctor should be monitoring your PSA at least a couple of times a year so if it starts rising you will need to look into other treatment plans.  Most of us here on this board are living six months at a time(every PSA test) so like all of us wait til your next PSA test.  If you show no other symptoms and your PSA stays at a constant level then you are good to go.  Don't worry your self over what could come in the future but try and stay focused on what is happening today.  Like the others have said stay positive and don't worry now.

Dave 3+4

Melvin10
Posts: 3
Joined: Sep 2018

I am a lot like you.  I had the radiation instead of surgery and now I regret it.  Drs. will not tell you what to do, and they will always make a case for their own treatmentts.  I almost chose surgery, but I was a nervous wrek and could not bring myself to do it in the end.

 

MudMan's picture
MudMan
Posts: 23
Joined: Jul 2018

Steve1961, my options for treatment were very similar to yours and I struggled with the "right" decision for a very stressful month.  I had my mind made up to go radiation with HT until I realized I would not be able to take my blood thinner medication for my CAD issues.  I ended up going the RP route which was done last week.  I agree with Melvin10 in that I was looking for my Uro team lead to tell me what option to choose.  Didn't happen and he would only say there are no bad choices.

If I understand your current situation your radiation treatment may have been successful and if that is is the case, don't worry and enjoy the day. 

GeorgeG
Posts: 127
Joined: May 2017

My wife and I have been through it (multiple cancers, autoimmune diseases, ...) so we understand how hard this can be so I respect your anxiety and fear with everything that you are going through. 

One thing that we have come to understand is that life has no guarantees or warranties. Very few of us go straight through to 85 and die in our sleep with no suffering. What this means is that for almost all of us, a pain, a blood test. a scan brings us into the doctors office to hear the start of our particular path for the medical bumps in our particular road to get through life. Some are a little more fortunate and deal with bad knees, kidney stones, etc and some of us get some more serious challenges like most of us here, and some get a massive punch to the face with untreatable and fast moving problems, or worse yet no warning and a stroke, heart attack, drunk crosses the centerline, etc.

Look at Max in the post above. He has been through the ringer and is still swinging away at life and positive. Do the level of research that you are comfortable with, challenge the doctors at the level that is appropriate, get second opinions, come here for guidance and then commit and be confident that you made the best decision with the information available to you at the time. Then don't look back, even if you may have screwed up, you can't change it. Negative emotions only make the bad go faster and get worse. After the news, rinse and repeat.

On any new day all we can do is make the best new decisions possible. Sunk cost is sunk cost. There are so many examples of people getting a gut punch and then picking them selves up and charging toward the goal. You see it in sports, medicine, business. Life or their own mistakes kicks them in the a** and they just keep improving the process and never give up. One of my best friends has a very aggressive and dangerous cancer and was only supposed to live 3 years in his early 40's. He is comming up on a decade with ZERO cancer in his last scan but his road has been very tough with very advanced cancer at one point. Surgeries, radiation, chemo ...He is one of the most thankful and happy guys I know, I love hanging out with the guy.

Every week that we are all still here talking, helping, sharing is another week that we get to enjoy life and share good times. Get rid of the toxic thoughts and toxic people in your life and make every day count. In the end you will have more good and wonderful days than people that don't have cancer but can't get to a peaceful and happy place. Don't stop fighting and hoping but make some peace with this and cut yourself some slack, this s**t is hard. You have many good years or decades ahead of you, make 'em count.

 

George

 

Steve1961
Posts: 216
Joined: Dec 2017

Just wondering cam the pelvic area be rasizted twice anyone know 

G53
Posts: 33
Joined: Jul 2018

If just the prostate has been radiated you can radiate the lymph nodes later. You may also be able to add a boost to a specific area with hdr brachytherapy or SBRT. But all that has to be discussed with the RO.

G53

Steve1961
Posts: 216
Joined: Dec 2017

I did have a hdr boost ...what the hell was I thinking ....when I first went to see this mad scientist he wanted to do one in the morning then stay there all day and night with the catheter in me on pain meds and do it again the next day ...WTH I must have been out if my mind to even think about that ...now thT I look back this man is crazy who would do something like that .,maybe an 75 year old ..I can’t believe  he even offered it to me ...(content removed by CSN staff)...all they care about is their numbers and I fell fir it ...I git every side effects t in the book ...I hope God won’t curse me ..but this guy should ha e told me I was better off with surgry at  my age .....I swear if I see him in the street I will punch him I the face 

brizee
Posts: 5
Joined: Aug 2018

They should never offer any form of radiation to a healthy person under 60.  I wish I had the surgery, but I was scared of it.

brizee
Posts: 5
Joined: Aug 2018

Anytime you leave in the prostate. and if you have a long life expectancy, that's more time for the cancer to come back. The only thing they offer then is lifelong ADT.  It's criminal.  But radiation units are a moneymaker for the urology practices.  Think about it.  You are in a copnfused, vulnerable state and they make an appointment for you with a RO and surgeon that is part of their practice.  Like the next day.

They should have psychiatric social worker on staff to help with these decisions.  There are some oncology groups that have them.

brizee
Posts: 5
Joined: Aug 2018

Here is what they should tell you.  If you have surgery, you can have radiation later if you need it.  If you have any radiation, you cannot take out the prostate, and your future options are very limited.  If they would state it in those terms, the choice would be easy.

ASAdvocate
Posts: 113
Joined: Apr 2017

There are several non-surgical salvage treatment options should there be a recurrence after primary radiation. Surgeons only tell you that surgery is very difficult afetr radiation. That is true, but the message is false by omission.

https://pcnrv.blogspot.com/2017/09/focal-salvage-ablation-for-radio.html

 

Old Salt
Posts: 720
Joined: Aug 2014

There are many options if primary radiation fails. 

But please let's not start another surgery vs. radiation 'battle'. They both have advantages and disadvantages. 

RocketsFan2018
Posts: 6
Joined: Aug 2018

Exactly the way it was put to us.  Plan A is surgery,  Plan B is radiation is Plan A reocures.  Very hard to to put Plan B first and try for surgery second.

brizee
Posts: 5
Joined: Aug 2018

Sorry, but I feel they sameway you do, but it took me 2 years to feel it.  It happened because of my PSA went from 0.33 to 0.5.  Which was a rather large jump from previous levels.

Steve1961
Posts: 216
Joined: Dec 2017

Well I saw quite a few ...that’s where I got confused..one surgeon did say that thete is no plan b ...I guess I was just deep down scared of surgery...the last  surgeon whom I respected a lot ..did say at first to take it out hands down but stsrted talking about radiation as well ..which confused me  oh Well ..all I know is that they do salvage radistion at my hospital and another one svross the bay so if it does come back I can take it Out fir sure ...but the radiation screwed me up bad 

Melvin10
Posts: 3
Joined: Sep 2018

What happened was that you were feeling a great deal of anxiety.  Anxiety produces cortisol whch impairs your memory and even the ability to think straight.  You will forget what has been said in your meeting with docs, and other information.  You will have lots of confusion.  I bought a book called The Decision, about how to decide what treament to pursue when diagnosed with PC.  It had a helpful cheat sheet that described the surgery vs radiation issue.   I bought it June of 2016, by the middle of July, I forgot I even bought it  That's what stress can do.

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