New Member - 4+ Years In, What Would You Do?

Since early vs late is a controversial subject here and in the medical community as well, Im not sure being upset with the doctor for his position on it is fair. If in fact the uncomfortableness you felt was not due to his position on it but on, for lack of a better phrase, the personal or lack thereof interface, and I sense it is...then it is perfectly fair to advise your doctor of such and switch to one of your liking. Having said that, and this is why treatment choices are so difficult with this disease, I have heard some say on this forum and I agree with the statement. " I don't care a bit about his mannerisms , bedside behavior , et al, if he knows his stuff and can spare me some grief, Im fine with that." To my knowledge, and I could be wrong, there is no difference in mortality by earlier HT treatment vs late, even to the on set of symptoms. I have walshes 2nd addition and as I remember and paraphrase it thus. ' it is not the testosterone dependent cancer that will kill you , it is the HT refractory that will. Now obviously he did not meant the Testosterone dependent will not kill you if left untreated, it will, but he throws out a theory that the timing, and again I repeat... to my knowledge, studies have either not addressed the issue of mortality or have have with a conclusion, possibly wrong, that mortality is not affected twix the 2. Controversial , yes.. but all facets of Pca seem to be so. Again this is why TX decisions are so difficult for the patient. Its like the old game show Deal or No Deal. Its not until the last case is opened until you know. I have tried very hard to explain this in a way that will not upset anyone. We will see. Also if any one knows, on a factual level, about what I have written,especially on mortality rates re the timing please advise...not for me but for the threader. Good luck with your decsion and of course all decisions like this are based on yo the patients metrics, physical and/or physiological. My personal decision on this issue, based on my metrics, age, post op path, general look out on life,e.g.. quality vs quantity is to wait for symptoms, if in fact I do have a recurrence. I stand by the minimum of .2 plus 3 consecutive rises up to MSK's definition of .4 Of couse I could completely eliminate psa testing, given my decided course of action. And if/when there is symptoms treat and maybe not even then. I am 72. the best advice I can give. Once you make your decision proceed with faith in that decision. Good luck!

Cincy12 said...
It would have made a big difference to me if he'd simply taken the time to review- or ar least mention - the various considerations in some detail. I just can't stomach feeling rushed when the stakes are this high.

It would cause me to lose faith in the physician also.

In the future, how could you be sure he isn't leaving something out or shorting you on something else? Plus, at this point it appears you are moving towards a higher level of care than he is able to offer.

And I'm not impressed or distressed over what some people call "bedside manner."

A physician's manner should notable for listening, answering questions (some before they are asked) informing and communicating. He can be socially awkward,arrogant or a jerk, but he still should cover the communication bases if he is top-notch.

Thanks to all for your invaluable support and input. My husband is going to be treated at Dattoli. After weeks of research and indecision (you might call it dithering), it feels very good to have made a decision. Onward!

Hi Texan, I'm so sorry to hear that your post-surgery PSA wasn't what you'd hoped for. I know well all the questions, concerns and anxieties that news brings with it. It's clear you're doing what needs to be done to make the best decision you can for your treatment! Looking back, I wish we had been more aggressive in pursuing treatment alternatives years ago.

My husband had scans at Sand Lake earlier this month and has his first appointment at Dattoli early next week. With the holidays and a vacation we had booked, treatment was delayed longer that we would have liked. He also began some "light" HT in December. It's certainly not easy to cope with him being away from home for a couple of months, but we feel good about the decision. All of the staff at Dattoli have been outstanding to work with so far, providing prompt and personalized communication.

I can definitely relate to your wife's anxiety. I wish both of you the best of luck as you continue on your journey!

Hi Texan, The cGY is a reference to the dosing rate of the radiation. I'm not sure that the 6619 is correct, but I don't have my husband's records handy. The 33 refers to the number of treatments he received. The radiation he had in 2012 was to the prostatic bed. As you pointed out, it seems to have done little good. I assume that was because the cancer was already outside of the prostatic bed in the lymph nodes. There was no discussion about treating the lymph nodes during this period, even after the PSA began to rise. We were being told just to monitor the situation and wait. Looking back, I don't even know what we were supposed to be waiting for. Dramatic PSA rise, I suppose – which is what happened last year. The nature of PSA is that once it takes off, the numbers can get very big in a hurry.

Lupron wasn't suggested for my husband until October 2015. That oncologist took a very conservative approach to beginning HT, clearly. There was never a suggestion of chemo.

My husband is getting radiation (40 treatments, I believe) to the pelvic lymph nodes at Dattoli. The scan he had in early January at Sand Lake 2016 showed lymph node involvement but no distant mets were found. We know that this may not be curative. He has also begun HT. Although he pretty much breezed through his earlier radiation, this time it's more difficult. It is the medication he's taking to protect the body from radiation damage that is causing nausea, etc.

Everything is so stressful and hectic at this point with him so far away from home, that I hope my answer is somewhat coherent. I need to update my signature with his latest numbers soon.

This is a tough period for you, I know, but your body does need time to heal. You're much more aware of your options than we were - so kudos to you! Please continue to ask questions and learn all you can. I wish you all the best!