Message for all new members

[G9doingfine]

Hi ,

I am seeing a common theme in many strings and I thought it would be good to pass this strong bit of advice on to all new members on this board - you MUST become your own advocate !

I have been to hospitals on both coasts , both well known institutions with great reputations . At each , I sensed that my Drs actually cared about me, and would spend any needed time with me IF (and only if) the need for the time was driven by me and my questions . Otherwise , I believe they couldn’t get out if the room fast enough.

I am not faulting them in any way - as I said , they would stay as long as needed. But they certainly weren’t offering additional thoughts or guidance or recommendations .

So my point here is that YOU must be prepared with questions. Write them down ! You will forget some of them . Ask them all ! You will be surprised how many times a treatment decision is actually YOUR CHOICE . This has always baffled me as I am not a Dr., yet the treatment choice is left up to me ?

Remember too - surgeons want to operate, radiologists want to radiate, etc. GET second opinions !!!! I actually think I may have altered my original treatment had I known more about this disease and my options. Let’s face it , when diagnosed , it blows you away and it’s hard to sort everything out . Ugh.

I’m almost 3 years in and I still wonder what to do next . This board and the devoted contributors have been an amazing source of information and inspiration to me. Thanks to you all !

I love the phrase - “You are a statistic of 1”

That’s great advice. You are unique . Stay in the moment . Help yourself with exercise , some dietary changes , and lifestyle changes . Hopefully , you have the support of family and friends .

I know the good people on this board are here for you ! Wishing everyone the happiest of holidays and a wonderful 2019!

[NPfisherman]

Great advice...know where you are at with this disease, listen to your Oncologist or Oncologists--I have a medical and radiation...look at the trial results....be knowledgeable...there are no stupid questions for the MD...exercise, cut out sugar...spend time with the ones you love....Happy Holidays to you as well...

[cesanon]

Good advice.

[cesanon]

I would add, do your own investigation on side effects. They always do a poor job at this

[Ian2017 in reply to cesanon]

Good advice. My biggest frustration is the general lack of 'lateral thinking' when it comes to the side effects of various treatments. I have found that most times the oncologist will simply pass one on two another specialist rather than say "hey, I have seen that effect before, why don't you try this or or that ..". I appreciate that there are sometimes liability issues involved but some degree of broader thinking would go down very well!

[harryb48]

My philosophy;

The squeaky wheel gets the grease! You have to be vocal, ask tons of questions and be persistent!

[Mathes72]

My feelings exactly, the Dr. Staff, every one is there to do there job. if you are lucky they are nice an respectful, my cancer center is part of a large hospital group,in a small town,they are all great,but I have not been invited over for dinner. they too have separate lives an problems,a doctor told me many years ago you have to be your own advocate.if you do not look out for you no one will(family exception)

[Hawk56]

So, some of my "rules".

I am in charge. Not my doctor. They need to be consulted and their opinions and ideas should carry weight as I make my decisions. But I never forget: it is my life, my today, and my future. I have made the best possible, fully educated decisions that makes sense for me, in my case, long life..

Don’t Walk In Cold to an Appointment. To make sure I do the best thing for my individual prostate cancer, I need to educate myself.

Knowledge will empower my BS detector. When two top urologists told me ADT is what I need and did not want to talk about imagining and combining other therapies such as radiation and chemotherapy, I didn’t just have to accept their advice on faith.

I walk in the door ready to start the conversation at a different level. I don’t have to spend time talking about the basics, things like GS and clinical stage and what they mean. I already know. I can have an intelligent discussion about the merits of a particularly treatment for my cancer, my likelihood of being cured, and risk of side effects.

I won’t blindly accept the opinion of a non-specialist – I know that my cancer requires a team approach.

[whatsinaname in reply to Hawk56]

And, importantly, how did your doctors react to you ?

My quacks (here in Bombay) get offended that I should so much as dare to query them.

Their sarcastic reply to me is that I "google" too much

Fortunately, we have a lot of doctors (quacks) here and one can always get a second, third fourth or even fifth opinion. But, it requires time, effort, money and a lot of patience. To find the most knowledgeable, dedicated and caring amongst them.

All the best, Hawk56. More power to you.

[Hawk56 in reply to whatsinaname]

With the exception of one, all have come around to my way.

[4luvofrob]

As always, excellent advice ... what you have stated has certainly been our experience....

the amazing people on this site have been invaluable in helping me to advocate for my Rob...I only wish I could better keep up and know just the right questions... I do ask a lot from what I learn through this site....but often find myself getting lost as I try to explain when the doctor seems to not be on the same page......I recently scheduled an appointment with a new oncologist for a second opinion on Rob's situation.... I hoping to form a good communication ..... and find more interest in exploring all the options and determining what is the best for Rob. Blessings on all of you....

[Break60]

I agree. You need to know your disease status thru research and let your doctor know that you know thru smart questions.

[j-o-h-n]

I think giving a bottle of wine to your doctor every now and then helps with having a good rapport with him/her/it. Especially if he/she/it drinks the whole bottle while you're consulting with him/her/it.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 12/18/2018 7:09 PM EST

[Drphil1938 in reply to j-o-h-n]

Only if he or she will share.

[j-o-h-n in reply to Drphil1938]

Okay I get it.... Rome wasn't built in a day...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/22/2019👀 11:08 AM EST

[tallguy2]

You have nailed it. Thank you.

[Shepard]

I agree with your advice. I do my best to stay informed and am thankful for "HealthUnlocked" as it stimulates me to go to places I would not think of on my own. My Doctors express gratitude that I come to consults prepared with good questions and am able to engage in meaningful conversation. My Doctors have given me choices and I commit to those we select. They have come to believe in me and know that they are not wasting their time in treating me. I follow "our" program religiously. From the beginning, in 2010, I accepted my patient responsibility and I believe this approach has been helpful in carrying me through some difficult times to the present time of better days.

[JimVanHorn]

I went to a radiologist (who only charged me $30,000. for 42 radiations instead of $130,000), but he was an a-hole! I had already decided to have the radiations, but he actually showed me a picture of the skeleton of a human body with the bones colored in on the left side and the floating bone on the rib cage colored in. Then he look me straight in the face and told me that was my skeleton. I began to laugh and he became angry. He said that since the floating bone had cancer it meant that my right side would soon be consumed with cancer if I did not get 42 radiations. I had already decided to have the radiations but he was just ridiculous. I told my oncologist and he just laughed and I got my 42 radiations for $30,000. Three years later I needed 30 more radiations, but I had Medicare and they charged me $42.00. So I had Eligard for 6 1/2 years and now I have no more cancer! So just keep truckin'.

[Je1234]

I agree. They don’t really pay attention to the details.

[jfoesq]

Great advice. The one thing I would comment on is when the doc leaves a particular treatment selection up to the patient. I believe there can be 2 reasons for that. The first is- there are many different treatments available (radiation, surgery, along with numerous different medications) and there haven't been enough studies done for them to "know", which are the best ones to use in a particular case, and in which order to use them. The 2nd reason is that the risks and side effects of certain treatments may be something some patients are willing to accept to increase their chances of living as long as possible, while others may be willing to trade-off some life expectancy for less side effects and a better quality of life (QOL). So- as long as the pros and cons are presented accurately to a patient, it should be the patient who decides which treatments he wants to pursue.

[cdwalston]

Great comments. Can’t overemphasis a second opinion, if not a third. Prior to my second opinion, I was misdiagnosed for 6 months with prostatitis, multiple ER visits, allergic reaction to the sulfa antibiotic, and ended up self-catching for four months. During my misdiagnosis, my PSA was checked only once and I still have the medical records! Be your own advocate!

[shueswim]

Well said - you’ve put into words what I’ve been thinking for a while now.

[robobob7777]

Remember too - surgeons want to operate, radiologists want to radiate,

and oncologist want to drug you. This is all true. It has been proven in the Canadian med industry, Just read a headline about this problem in Canada.