hOW I got here: Newly tagged with the... - Prostate Cancer N...

Prostate Cancer Network
2,512 members1,320 posts

hOW I got here

MINE2
MINE2

Newly tagged with the BALL ... They just said, "YEP!! Yah got ..." I didn't hear the last word cause I already understood what it had to be like. The doctor spoke and disappeared so fast, the papers on his desk fluttered a few seconds before settling down. On the one hand? ;The disease. On the other hand?; treatment options, all of which seemed like customized diseases. "Take your pick," he said ,Whoossh! Out

13 Replies
oldestnewest
Darryl
DarrylAdministrator

Sounds like you need a second opinion, or, a new primary urologist. No one should feel rushed or left on his own.

MINE2
MINE2
in reply to Darryl

Yes ..., everyone in the "You-got-cancer" department, to my surprise, is as detached as you'd expect to find in an auto body shop. What is a life-or-death turning point for the patient appears to be a yawning experience for THEM.

That sacred me as much as anything else. They made it clear that I am on my own.

Darryl
DarrylAdministrator
in reply to MINE2

well, "they" are wrong. You are not entirely alone. You have all of us, here, at Malecare. And, you are encouraged to find a different urologist.

Depending on your point of view, that is either the trajedy of the current system or one of the best things about it. When it comes to deciding which treatment plan you want to undergo, you are on your own. You have to own your treatment plan. No doctor will do that for you, for obvious reasons. If you look at the statistics for all the available treatments, the outcomes are similar. They also look at only one result, if you are still cancer free after 10 years, it counts as cured. It does not look at your quality of life, such as whether or not you have a sex life, or can stay dry. To the individual, these are crucial outcomes. So, MINE2, you have a steep learning curve ahead of you as you gather information about your disease, and learn about the treatment options available to you.

MINE2
MINE2
in reply to David1958

"When it comes to deciding which treatment plan you want to undergo, you are on your own."

Thanks, however it may be a BIGGER picture than that. Yes, "on my own" But WE are all on OUR own. You see, we can choose a treatment but the MedicalPharm conglomerate, that allows only the investment-loaded, billion dollar, quality-of-life-changing, treatments through the door, 3 methods: poison, cut or burn. I never assumed God made any of these natural to the human body. [ I hope this post hasn't broken some kind of rule ]

David1958
David1958
in reply to MINE2

Mine2, you said it right, 3 methods: poison, cut or burn. I have often said the same thing slightly differently, slice and dice, cook, or frozen. But now we have HIFU too!

We all come to the diagnosis with our own opinions and biases. The doctors have their own biases too, of course. But they're supposed to know more than us. The USPSTF updated guidance for PSA for 2018 states: "For men aged 55 to 69 years, the decision to undergo periodic prostate-specific antigen (PSA)–based screening for prostate cancer should be an individual one. Before deciding whether to be screened, men should have an opportunity to discuss the potential benefits and harms of screening with their clinician and to incorporate their values and preferences in the decision. " So the decision is ours, but the "clinician" is there to guide you to your best decision. It is frustrating when there is no one absolutely correct answer, but for your doctor not to discuss the advantages and disadvantages of each potential course of action, so that your decision is not ENTIRELY made based on emotional factors, is important.

When my brother was diagnosed some 6 or 7 years ago, his surgeon (the chief of urologic surgery at one of the top cancer centers in the country) presented both surgery and active surveillance as options. "Which should I do?" my brother asked. "Whichever you prefer" was the (non) answer. I kind of lost my cool and asked "If it were YOUR brother what would you counsel?" --to which he immediately answered surgery.

There is confusion because there appear to be multiple right answers. There may be, and at bottom is the simple fact that risk assessment is far from an exact science. His disease was upgraded after the surgery. Had he done AS there's no way to know when his high-grade features would have been discovered. He's doing well, BTW.

Your doctor has IMO the absolute responsibility to help you come to a decision you can live with.

Good luck!

Even after my initial diagnosis and recommendation from my urologist (surgery, ADT and radiation) I choose to have a second opinion at Duke Cancer. Three specialists, three outlines of possible treatments, but no conclusive recommendation. It seems many health professionals are hesitant to commit to a specific route, just in case. I found the decision more stressful and aggravating than the original diagnosis. If you care to look at my earlier posts, you can see my thought process and final decision. Good luck!

MINE2
MINE2
in reply to Stellabell

Thank you for your comments. I am finding the feedback from you pts. more believable and, therefore, helpful than anything doctors and other profit-makers have offered. I will look for your postings. It's scary. My sense of hope is just like a roller coaster ride; UP / dowwwn. Did you filter-out based on side effects?

Side effects were a big concern, yes. Since every expert consulted believed I would be best served by a full round or radiation treatments even after a RP (tumor in seminal vesicle, 17 of 20 biopsy samples positive at 8 or 9) I decided to forgo the extra side effects and opted to skip the surgery and do ADT and radiation alone. Long term results, from my research anyway, seemed almost equal either way. In week 3 of IMRT now. Right decision? Confident now but who knows.

I had Proton Beam radiation 9 years ago

No side effects. Good luck with your decision. I sent you an earlier post with more details, but it wasn't posted?

There is a new intervention used to protect the rectum from radiation... a sort of jell, positioned as a barrier between prostate and rectum. It REDUCES side effects. It is called, SpaceOAR . So, I am surprised YOU had no side effects from the Proton beam.

I recall that moment as if it were yesterday instead of 20mo’s ago!! I could’t help but to think that they would be of more help deciding. My Dr. did however go over the pros and cons to help with my choice!! Second opinions are the same.

I hope I am not breaking any rules, I am new on this site as of today but am enrolled in a number of groups all of which have given me the information that the healthcare pro’s didn’t / wont and advise you to do the same!! If I sound ignorant at times, please bear with me the reason will be made clear below! I hope that voicing my fustrations will hopefully reduce yours. Sounds like they stated the same!!!

I chose Radiation for my treatment. Both RT and surgery are accompied with Hormone therapy. Recovery period would interfer with work and was told sucess rates were similar.

And now the rest of the story.

The RT was a cake walk, inconvient at best by dropping what you are doing in the middle of every day for weeks. left me with a minor bowel issue!! Thus is the first (of what I found to be fairly common) things they didn’t tell me. Some men (I now using that term loosly) experience, lets call it “cold shower syndrone” and the last thing you want to do is lay on your back, pants to your knees, with the technicians hovering over you while getting into position for your treatment. You know they’re profesional but it doesn’t lessen the humiliation!!!! I was sitting in my Urologist office after I had completed my 44 treatments when I pointed to the picture of the guy cut in half on the wall. Told the Dr “I want to look like that again”!!!! He discribed me to a tee and sent me to mens health for penile rehabilitation. Said I should have mentioned it sooner!!!

Now the HT (Hormone Therophy), first learn to say to yourself “but at least I’m alive”. You’ll likely say it often.

It’s what they don’t tell you and will not admit that it is a result of the drug, in my case Eligard.

The’ll warn you of the comon side effects which are all commonly associated with menopause (hot flashes, mood swings....) Omitting (at least in my case (and many many others that I have read about)) the excessive weight gain, the joint pain, mussel loss, chronic fatigue, rage..... but the one that I never saw coming was the mental fog (AKA Lupron Brain).

BUT AT LEAST I AM ALIVE

LB (Lupron Brain) is a term I stumbled upon in my searches when I was looking for Elegard side effects. Lupron is an older treatment but basicly the same drug, administered diferently. LB was a show stopper for me and although denied by my Urologists, I found to be quite common in support groups.

My Oncologist admitted to me that he did not believe in LB until a close colleague of his complained of it forcing him to leave the pratice.

The worst part of LB is you can see how stupid you’ve become. You see the math problem but can’t solve it. You know the word but need to ask what it is!!! Too many examples!!! I build hospitals, schools, waste water treatment plants...... for a living but now I sit there with two pieces of a toy with no idea how to assemble it!!!

BUT AT LEAST I AM ALIVE”

Get used to bring your questions to your appointments and hearing “ thats not caused by.......” but keep in mind, if;

*your hips and knees (joints in general) are killing you

*you need help with many common lifting tasks

*you have trouble with rectal hygiene

*you want to tear off someones arm and beat them with the stump

*you can stand crouds and noise

*you have to refer to your chest as your breast now and if touched you’ll shoot through the roof (yes, after they zapped them)

*you immediate want a nap upon waking up from a nap

*you cry like a school girl left home on prom night

*you don’t skip an opertunity to pee and don’t trust a fart

*etc.

.....It is likely a result of your treatment and god willing, this too will pass!!!!

I pray that my story is a worst case scenario as I am sure some may respond, And I hope and your treatment will be a breeze!!

Know this, You are likely in for the most emasculating couple years of your life!!!

BUT AT LEAST, YOU ARE ALIVE

You may also like...