Short recap: MRI found tumors, biopsy results Gleason's 8 and 9 in majority of samples, cancer found in left seminal vesicle, all pretty grim. Local urologist recommended surgery. Went to Duke U. cancer clinic, met with surgeon, medical oncologist and radiation oncologist. Apparently surgery alone will not provide a cure. All three agreed to either:
1 Radical prostatectomy followed by 6 to 8 weeks of radiation treatments and hormone therapy or
2 No surgery followed by 6 to 8 weeks of radiation treatments and hormone therapy.
What am I missing here? I understand the psychological satisfaction go getting that damn thing out of my body, but is there really an advantage to having both surgery and radiation with hormone therapy as opposed just radiation and hormone therapy?
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Stellabell
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That was already a second opinion, from three different experts. There is apparently no difference in outcome or life expectancy. They all insist it is just a personal preference. I finally asked the medical oncologist, the one doctor who seemed the least biased, what she would recommend if the same situation applied to her father, and she said skip the surgery.
William Lee WAS the specialist I spoke to at Duke and he specifically recommended against brachy boost because of the involvement of the seminal vesicle.
HDR brachy can reach the seminal vesicles. If he is using LDR brachy (seeds) he can only treat the seminal vesicles with external beam radiation. I thought he can do HDR brachy?
My specific question was if he could use "external beam brachy boost therapy", a term I may have gotten from one of your previous posts? Since he had copies of my biopsy, redone at Duke, and my initial MRI, perhaps there were other mitigating factors I was not aware of. He seemed quite certain about his negative response.
I am also at Duke - in addition to Dr. Lee, which surgeon(s) did you speak to? Although you may be satisfied with your med onc, I recommend Dr. Berry in Cary (also affiliated with Duke). He is a PCa expert (and had his own prostate removed after PCa) and I found him to be very helpful, knowledgeable, and open to feedback.
I also saw Thomas Polascik, surgeon and Megan McNamera, medical oncologist. All three were helpful but they all said it is a coin flip as to which treatment would be best. When pressed, Dr. McNamara finally said if it was her dad, she would have him skip the surgery. Since I am over 4 hours away, in Bristol, Va. having radiation treatments at Duke is not realistic. There is an experienced surgeon here I would trust, have not yet met with a local radiation oncologist.
Seems like you are on the right track - get as much information as you can, meet with multiple MDs, and then make a personal decision that works for you and addresses what is most important to you. What I found helpful was putting together a matrix of the alternative treatments that I was offered, along with pros/cons. Filling out pros/cons took some time for me because I had to do a lot of independent research to go along with what medical experts told me. I then opted for RALP (which is coming up soon so realize that my comments are not post-treatment) and took the med onc through my rationale to see if it seemed thorough and reasonable. I did not expect him to "endorse" my decision, but did appreciate their feedback. Best of luck and I wish you all the best in making your decision and staying healthy.
I understand 2 opinions. I will tell you I had 43 fractions of EBRT (no hormone treatments) effects were tolerable, fatigue close to the end of treatments the worse. My PSA after one year .02. Before it was 6.86. I now have NO ED, no Viagra for erections. Just my opinion, I would not have the surgery. The radiation and hormone therapy would certainly be my choice.
Not according to the latest studies. Brachy boost therapy had MUCH better metastasis-free survival and prostate cancer-specific survival compared to surgery + adjuvant/salvage radiation (when warranted). Read this:
Interesting reading. I note that the studies found some significant differences with BBT, but these apparently disappeared when looking at mortality. Also there was lots of discussion about shortcomings with the study cohorts particularly that the guys in the different groups were different ages etc.
If studies corrected for these e.g. comparative groups and looked at quality of life to see if there was signficiant improvement with BBT it could be very informative.
Do you know of any reasons why brachytherapy might NOT be a good option. When I was diagnosed I was told it was inappropriate. I never thought of asking, but it may be because I had chronic prostatitis for years before and the gland was a bit of a mess!
It would take 15-20 years of follow-up to see a difference in overall survival. However, the prostate cancer-SPECIFIC mortality was already significantly different. They did correct for age and disease differences.
Brachy boost therapy carries more risk for incidence of late term urinary side effects compared to external beam alone.
It was a retrospective study. There was a prospective randomized clinical trial (RCT) called ASCENDE-RT, and there have been a couple of other RCTs using HDR brachy:
It's ethical to wait for deaths to occur, it's just very costly. They usually measure "surrogate endpoints" like biochemical (PSA) recurrence-free survival or metastasis-free survival which are good predictors of overall survival, but occur much earlier.
I guess "retrospective" is more feasible, If I had to wait for deaths to occur, I might be the first to go
Thanks for the links
Sorry to hear of your circumstances. I imagine it's difficult to deal with the emotional impact of your diagnosis and try to make decisions about what treatments to pursue at the same time, i.e. at a time you're probably not in the best state of mind to make life changing decisions. I also imagine that really what you'd like is ONE definitive piece of advice that would tell you exactly what would be best.
I don't really think you're going to get that. I do think you need to seek enough information to give you some reassurance that what you eventually decide on has a good chance of effecting a cure. I also think that there's a danger that you can become overinformed especially when different pieces of information contradict other pieces of information. Additionally if the information gets so technical you find it difficult to absorb.
I apologise in advance if I'm being over-presumptive, but I am trying to put myself in your shoes. So, firstly, as happened with me, you might be finding it difficult to accept the diagnosis, numbness, disbelief, hoping it might be something else. If you've already got over that, it's difficult to accept the reality of having treatment, not knowing if the treatment will really work and wondering how damaged it will leave you. Some damage is inevitable.
So you have to find a balance between what treatment is aggressive enough to get the best result in terms of the disease and is not so aggressive it makes the quality of life you're left with so poor, you might not think it's worth having.
I see there are two main things you need to consider which are - 1 how are you oing to cope with making the decision, undergoing the treatment, dealing with its effects and adjusting to a changed life after it. 2 - at some point you are going to have to trust you are doing the right thing for you.
I hope you find this forum useful in helping you with the first of these things. Guys share their experiences and give encouragment that may make you feel that you are not on your own with this. Guys have been where you are before and can see the way ahead. It would also be good if you can find a local Prosate Cancer support group. Perhaps if you say where you live, soemone can give you the details of a group where you are.
As regards the second thing. You have had two opinions of people who I presume are qualified medical experts. I can understand that you might want to check that what they're saying is right, you're seeking re-assurance. The danger with that is, the more information you seek to re-assure yourself, the greater the danger is that you'll find things that cast doubt on what you've been advised as much as things that affirm it.
In view of this I suggest you look up about the treatments that have been recommended to you from good authoritative sources. I think you need to find some trust for your physicians, particularly as when it comes to actually undergoing treatment you are in their hands. Guys on here can only really tell you their experience or opinion, guys on here are not here because they are quailfied medical experts.
My opinion is, as I believe your doctors have said, whether or not you have the prostatectomy (RP) is a matter of personal preference and therefore will not effect the outcome in terms of eradicating the cancer. Can you trust that, or do you want to go the extra to make really sure.
If you do will you be able to accept the additonal damage surgery may cause you. If the treatment works (including the RP) will you be thinking, did I really need the RP and if the treatment fails (including the RP) will you be thinking, why did I bother having the RP it made no difference.
I'm sort of looking ahead for you because the view after treatment is different than the view before it. Uppermost now is getting rid of the cancer after you may find the consequences uppermost. You will see in this forum how often the word "regrets" appears.
I'm not sure what I'd do in your shoes, I am tempted to say skip the RP.
I hope this helps, I think my key message is
- consider the emotional impact of all this, seek support
Good advice all. I am dealing well with the emotional impact, am resolved to the news and ready to get something done soon. I believe I have a realistic attitude. I have overcome heart disease (quintuple bypass) and substance addiction so I know the challenges. I think you may be right about information overload. One more meeting with local radiation oncologist and then decide.
I agree with Tim2131's observations Advice from your clinicians is paramount they are speaking from a position of informed opinion. Unlike those of us who have been down various treatment routes as patients....... They may however be speaking with a clinical slant from which ever discipline they come from Urology or Oncology ? I understand that you are in the USA North Carolina so diagnostics might be different to how we proceed in the UK ..... Tests carried out are presented to a multidisciplinary team meeting to work out the preferred treatment pathway taking into account the patients preferences and likely effect on lifestyle ....Quite importantly there are no financial constraints treatment being free at the point of need and choice of treatment available at any hospital in UK that might use a particular procedure .....As a Pca sufferer who had open RP surgery in 2005 I would advocate this pathway it worked for me.... the point is that it suited my condition at the time ..It would be unlikely anyone else would have the exact same state of Pca ...There is no golden bullet ------ No one size fits all ----- We are not a car with a misfire that the surgeon might fit new spark plugs and send us on our way .----He might clean out the Carb ( Eureatha ) if we have an enlarged prostate Transurethral resection of the prostate commonly known as a TURP, transurethral prostatic resection, is a urological operation. It is used to treat benign prostatic hyperplasia (BPH). So many reasons to take time to ask questions so you know why each treatment is offered
Sounds a lot like what I had. I had a 4+3 biopsy score and elected to have the prostate removed. In surgery they discovered that the cancer had spread "outside the package" and had reached the seminal vesicles so surgery was followed by 39 radiation treatments and 2 rounds of Lupron hormone therapy. The cancer disappeared and my PSA was <.01 for over a year but then my PSA began to rise....,02.....05....07. So, back on the Lupron. PSA is now<.01 again. My Gleason was also a 9.
There is a problem with trying to extrapolate large studies to individual cases. Some would say that the doctors come with their own set of biases, and that is not wrong. But the statistics don't tell exactly what your doctor can on exam.
It is very frustrating when doctors tell you to "flip a coin". I remember going in with my brother about 10 years ago to consult with a very well-known surgeon. My brother had come up from Florida to be treated in NYC. The surgeon basically told him to flip a coin--RP vs. active surveillance. I got annoyed and asked what he would tell HIS brother, and he said surgery with no hesitation whatever.
Some of the guys here have tons of experience. I only know what I've learned from the history of my cancer, and that of my dad and brother, and the literature I've plowed through over years. That does NOT make me an expert. And, with respect, neither does the experience of the other guys here make THEM experts.
If you've gotten multiple opinions and you've been told that your prognosis is generally equivalent with either surgery or radiation with adjuvant ADT, then your decision has to be made on another basis. That means you've got to get all the information you can, not only about how you're most likely to keep cancer at bay, but your personal preferences about side effects and what treatment keeps your options open.
As a patient, I have my own biases. One of the biggies is that should primary therapy fail, it is a lot easier to do radiation after surgery than the other way around. My biases have come from not only from knowing some prostate cancer patients who (to be fair) may have been mishandled, and my own experience as a dentist needing to guide a patient who needed surgery after having had radiation to the head and neck. But I also know people who have had curative RT and are doing well many years later. I also had a father who had very widespread and advanced PC who was managed for many years with hormone therapy, and who eventually died at 91 of an unrelated cause.
It sounds as if you've generally gotten good advice. I also know that choosing between good options can be difficult. But it's still better than having to choose between bad options.
Yeah, it's rough. It's not a situation unknown to me as a dentist. Sometimes there really are multiple good options (the bad options are often easy enough to see). You've got to explain the advantages and disadvantages of each as you (as a clinician) see them. Then you have to try and find out how important each advantage and disadvantage is to the patient. I see it as part of a doctor's job to try to tease out what the patient is likely to find advantageous of one path over another, knowing that it's never an exact science--and having the humility to know when you're right and when you're wrong.
I'm sympathetic to the doctors who know there's not always one conspicuous right answer. They still should help patients find the best answer for THEM.
That's what I call person centered. No one should have the ultimate authority over anyone except themselves and a good practitioner - in any profession - should help a person find out what they believe is best for themselves.
Well, after careful consideration I have decided to skip the surgery and start hormone treatment followed by eight weeks of radiation therapy. Brachy burst was a consideration but both radiology oncologists I consulted were concerned because of seminal vesicle involvement and the fact that the biopsy showed cancer cells so close to the margin of the prostate (17 of 20 samples 8 or 9 Gleason's.) You want to do everything possible, of course, and at first skipping the RP seemed like taking a short cut. There is also something psychologically satisfying about getting that sucker out of there. However, since every expert I spoke to said surgery would have to be followed by eight weeks of radiation anyway, and the rate of staying cancer free afterwards was relatively the same whichever route I chose, there seemed no reason to risk the possible complications and added side effects that RP would bring. I guess only time will tell, but I am relieved that the decision has been made.
Stellabell, I'm not one to pray - but I am wishing you only good things and a positive result. If I had the information and recommendations you had - I strongly suspect I would make the same choice (and indeed may be doing that once all the scans / 2nd opinions are in.)
I'm so sorry to hear about your situation. I can only tell you that i had the surgery and have no regrets in doing so. Yes, there are downsides, but knowing that the tumor is gone is a big relief. Would I do it again? Yes, in a heartbeat.
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