It just means margins seem to be clear, pending pathology report, and the surgeon has no way of knowing if microscopic spread has occurred. Good article in the Washington Post. It may be behind a paywall, so I'll paste it here:
"It’s a common scene: A patient recovering from cancer surgery speaks with their surgeon, who reassures them the procedure went well and that doctors “got it all.”
But those three words can sow serious misunderstandings and even medical mistrust, suggest the authors of a recent viewpoint article in JAMA Oncology. jamanetwork.com/journals/ja...
The problem lies in a disconnect between surgeons’ “got it all” phrasing and their patients’ expectations, a group of bioethicists and surgeons write, because patients may think that, if all visible tumor tissue has been removed, they are cancer free — and that might not be the reality.
Although cancers can be completely removed through surgery, cancer cells can also spread to lymph nodes and other parts of the body despite tumor removal, and follow-up chemotherapy might be necessary. Even when a tumor is removed, only pathology can confirm that there is no cancer in the lymph nodes.
Because of its plain-English simplicity, “got it all” is unlikely to be questioned by patients, the researchers suggest. The writers of the paper worry the phrase could prompt patients to refuse chemotherapy when they receive a later confirmation that there is cancer in their lymph nodes.
Other research has found that cancer patients tend to be optimistic about surgery as a potential cure for their cancer. One 2015 study of 3,954 patients who had cancer surgery found that about 80 percent of those with lung cancer and 87.5 percent of those with colorectal cancer thought surgery would cure them, despite differing prognoses for people with those diseases. That perception even applied to the majority of respondents with Stage 4 cancers that had spread to the lymph nodes.
Ultimately, though, cancer surgery usually serves two purposes: therapy and diagnosis.
“Because patients primarily hear about surgery as being therapeutic, they are primed not to consider the diagnostic function of surgery,” according to the article. The writers say surgeons should watch their words — or risk disappointing or misleading patients."
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Tall_Allen
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Assuming you can never trust anything in the business, do you have a recommended phrasing for a question, that the Doc will truly understand and that will elicit a more complete and nuanced response?
So very true and important communication point that patients and families need to be cognizant of. Instead of we got it all, at least with brain and lung ( except where they removed the entire lobe) surgeries they use a more accurate description such as “I resected the tumor but pathology may reveal the need for further treatment” I don’t see where with a radical prostectomy they would say I got it all meaning all the cancer. I had a patient about 10 years ago who had esophageal cancer and the surgeon say he got it all with clear margins and the unfortunate medical oncologist had to reveal that a CT showed just 3 months later that he had not and he passed 4 months after that. Informative post, thank you
Dear TA, This is a thoughtful posting, so thanks for it. Having been involved with PCa since 2018, now, I have heard from many fellow PCa travelers after their RPs that their surgeon told them that, "it looks like I got everything," or words to that affect only to later find themselves disappointed. I heard that from my surgeon when I had my prostate gland removed, and one needs to believe that from the surgeon's point of view - which is not good when compared to his pathologist colleague looking at things under a microscope - they believe their own eyes. But, when you read many of the reports following RPs in the med journals, more than half of the operations leave micro mets behind in the margins, so the surgeons often do not "get it all," and thus as you and the Post article explain, the patient is not cancer free. It is my opinion, and no one wants to hear this, once you are diagnosed with PCa, you've got it for the rest of your life. It is a disappointment, but I think it is reality.
I don't think I'm a rarity. The recurrence rate after radiation for intermediate risk PCa is only around 5-10%, and the new recurrence rates for high risk PCa are almost as low. Medical technology has improved.
Tall_Allen , I am new to all this PC stuff. What treatment did you initially have? I am struggling with my options. I'm in Canada so treatments are done a little different than the USA.
What side affects/collateral damage have you experienced? Could you point me in a direction as to your entire journey? Curious about where your initial diagnosis labelled you.
I think it is a good idea to have a pathologist standing by to look at frozen sections. Urosurgeons don't typically do that because of their "hot dog" attitude that they can tell without it - and, to be fair, about 90% of the time, they are right. Then, at least, they can claim "negative margins" following surgery.
Abraham Lincoln said, "The hen is the wisest of all the animal creation, because she never cackles until the egg is laid.” I wish more UROs would act like hens. The test of whether a surgeon "got it all" is only passed if the cancer never comes back.
It’s obviously true and quite predictable that the average patient would trust the ‘got it all’ assurance from the surgeon, but I think the bigger issue is the patient’s assumption that surgery is failsafe in the first place, as you pointed out . ‘Take out the prostate, take the cancer with it’ seems wholly logical to the layman.
What is shameful is that so many surgeons are ‘all in’ on convincing patients (who hardly need convincing) that surgery is the ‘gold standard’ treatment, as Dr Patrick Walsh famously put it.
Especially egregious is selling surgery to men who present with high Gleason scores, high PSA, and other adverse features that essentially guarantee they won’t be ‘getting it all’.
My RP has resulted in undetectable PSA so far (3 1/2 years) , but at the cost of permanent ED and incontinence severe enough it necessitated an artificial urinary sphincter, as well as extensive additional treatment I could have done instead of surgery.
’Get it all out’ sounded good enough to me to look no further than the surgeon’s office. Yet he’s not the bad guy. He told me straight up that radiation had at least an equal chance of success, but I had my mind made up.
I can empathize. After surgery, my surgeon was wildly optimistic…. good margins, lymph nodes and tissue samples all clear. Then my PSA returned immediately. It was the same with my RO. He was wildly optimistic after my IMRT and ADT. My MO just rolled his eyes and said let’s wait and see. It occurred to me that these guys are speaking from their own perspectives. The surgeon and radiologist are hoping for a cure. The MO has seen it all before and is much more skeptical.
Wow 12 years post RP. I read your bio and when did you see the first PSA increase from basically zero? In your Bio you state "slowly rising PSA from 0.03 to 1.3 as of 8/2017." But how long after RP did you see the first increase?
My PSA reached .21 in July of 2013 at which point I knew that I had BCR. Unfortunately, I waited until it rose to 1.3 in August of 2017 to have the 68Ga PSMA PET/CT scan performed in Melbourne, AU which identified metastases in several sacral lymph nodes. My urologist at UCI talked me into having them excised via the'da Vinci robot' which was the same device that was used for my RP. That LN surgery was totally unnecessary since it had little effect on my PSA. Today I would have chosen to use the relatively new 'stereotactic ablative therapy' system of zapping the identified nodes. I blew off doing nothing until my PSA reached 1.3 since I have always been totally asymptomatic.
With cancers of all types there is a common understanding that despite the best treatment even a few cells may persist in the body. For those who are "cured" (lay language-NED No Evidence of Disease is medical term) this means that those mutated cells persist somewhere and are suppressed by the immune system, fail to find a fertile location to plant and grow, are weakened, and they may never populate and divide enough to create a recurrence. Cured is a tricky term to define. Survival also; if one dies from another cause with disease intact has one been cured?
Even if they kill every last cancer cell with radiation or some other method, who's to say that the conditions that caused the cells to mutate in the first place might not cause a recurrence of the same cancer later? Just hope for the best and deal with whatever happens! Que sera sera! 🦊
Yea, I heard that before. My bones scans and CT Scan all came back clear 5 weeks before the surgery too. But a week after the surgery I get the call that there is still cancer in there.
For the life of me I don't understand why they don't start hormone therapy right then and there. Or better yet, right after you are first diagnosed with PC. I was a hell of a lot stronger back then than I am not and could have handled it better than what it has evolved into now.
After two years, almost a complete loss of muscle mass, no energy, the chemo now kicks my ass for the first seven days, I can't even function. I couldn't care less about doing anything, and I have 4 more sessions to go.
Sounds like you've done your homework and I find your comment helpful. I had RALP 2 years ago and was told right after the procedure that I had positive margins around the neck of the bladder. For the first year after RALP my PSA was undetectable but has risen to 0.2 at this point. Now talking to an RO who recommends 6 mo. of Lupron + 6 weeks of combined prostate bed and whole pelvic EBRT. Without the possibility of any scan to determine the exact location of the problem I'm faced with the decision of going ahead with the recommended therapy (shot in semi-darkness) or waiting until the PSA rises a bit more so that worthwhile scans can be made to target the therapy more effectively. You say "Do NOT let it climb beyond 1.0 to 1.5" but that seems a very high threshold for follow up after a RP. Can you clarify that statement and what would be your recommendation in my case?
Sorry to interrupt. At a PSA below 0.35, the SPPORT trial showed that you do not need whole pelvic radiation, but 4-6 months of ADT had a significant effect:
Like many patients, you are overestimating the benefit of scans. The best PET scans can only detect metastases bigger than 4 mm or those with high tracer uptake. Most of your metastases cannot be detected by any scan. You have to treat what you can't see, based on the the known path of progression. If they were to find a met, they could give it a little extra dose, but waiting until your metastases are big enough to see is a huge mistake and a self-fulfilling prophesy. If you wait, it will spread and your chance of "getting it all" will be vastly reduced.
You are one of the most experienced members of this forum and your comments are always welcomed! Thanks for the advice and the link to the study, will have a look at it.
PSMA PET is not likely to show anything at his PSA - there is little benefit to it. In SPPORT aPSA of 0.35 was the dividing line for a benefit from whole pelvic radiation. There is no need to use abiraterone with this and ADT is temporary (4-6 months), not permanent. Hopefully, you will be cured by this.
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