My honey is too young to have prostate cancer!
July 9, 2008 9:00 PM   Subscribe

My partner in crime has just been diagnosed with prostate cancer. He’s in good shape, medically speaking, as the cancer was caught at a very early stage. Could I ask a few questions about age and prostate cancer?

Hellboy’s pretty young – he just turned 38 two weeks ago – and we’re having trouble finding information about prostate cancer that’s geared towards younger patients. All of the material we’ve come across is aimed at much older men, who seem to be faced with a different set of quality-of-life-related concerns.

I was wondering if there was anyone out there in MeFi-land who might have been in this same situation, and who would also be willing to share some thoughts on their experience as a (relatively) young sufferer of prostate cancer. We haven’t met with a surgeon yet, so nothing about anything is settled, and I guess we’re just trying to gather as much information as we can at this point.

Here are a few things we’d like to ask:
- To what extent did your age influence the treatment options that were suggested to you?
- What were those treatment options?
- Was there anything that you wished you'd known before embarking upon your particular treatment?
- How did this situation affect your Procreation Plans – did you decide to freeze, em, any useful fluids to avail of at a later date? If so, did that work out ok?
- Are there particular resources that you found especially helpful?
- Is anyone familiar with the world of urology in Toronto, Canada? If so, are there things we should know about specific places and/or people?

Thanks a million for any and all thoughts on the matter. I know you’re not Hellboy’s doctor, and we are going to ask these questions (and more!) of lots of Real World medical professionals. I cannot believe that this is my first Ask Metafilter question.
posted by Hellgirl to Health & Fitness (14 answers total) 4 users marked this as a favorite
The "good news" is that prostate cancer is a very, very slow growing cancer. This means that you don't have to rush the treatment, you can take your time doing research, exploring options, getting second opinions, making decisions about freezing sperm, and the like. During this time, PSA should be tested several more times to determine what the trend line is. (Little known fact: sexual activity up to 3 days prior to a PSA test can increase the reading significantly, so lay off prior to tests to get an accurate reading.) And I assume there has been a prostate biopsy to determine the grade of the tumor. All these factors play into treatment options. In any case, you should talk to a radiologist as well as a surgeon.

I was a bit older when this happened to me (50 ish), so I can't say whether the options might be different at 38 than at an older age. As you probably know already, the main options are brachyotherapy (radioactive pellet implantation, designed to kill the tumor cells), or surgery to remove the entire prostate gland. Surgery can now be done laporoscopically, which speeds recovery greatly. But you'll want to be sure that it's done using "nerve-sparing" techniques to preserve sexual function as much as possible. Ask your surgeon about their specific experience with this. And in any event, look for a surgeon who does a lot of this kind of surgery.

Not to alarm you, but another little-known fact is that the recurrence rate, even with a low-grade tumor that has not escaped from the prostate itself, following "successful" surgery or other treatment, is high -- for surgery, it's over 50% recurrence within 5 years. Now, that recurrence comes in the form of a very low PSA reading (under 0.1 at first). It's important, therefore, to have followup PSA tests, and to insist that they use a "hypersensitive" PSA test (which has a threshold reading of .02 rather than the standard test's 0.2. If you have recurrence, the trend line on these very low readings will help determine the aggressiveness of the recurrence and indicate what kind of further treatment is appropriate. It's important to realize, however, that because it's still slow-growing cancer, this recurrence is quite controllable very long term with hormone therapy, and other treatments are being developed. (Though there is still no proven chemotherapy option.) But it does need to be monitored and treated, because if untreated it tends to travel into bones and up the spine and become a brain tumor.

Because of the recurrence rate, I recommend thinking about the most aggressive possible approach now. In my view this would be surgery, followed immediately by a course of radiation and hormone treatment (rather than waiting to see if a recurrence happens and then doing radiation/hormones). You'll find studies out there supporting this approach and tracking results versus surgery alone. (One problem with prostate studies is that it takes a long time to reach conclusions, because of the slow-growing nature of it.) (Hormone treatment, by the way, means taking drugs that suppress testosterone, which is a necessary ingredient for prostate cancer growth. During any period of hormone treatment, don't count on any sex for 3-6 months.)

There's a usenet group on prostate cancer with some knowledgeable people, you might want to join and post questions there, also. There are tons of other Googleable resources, as you've probably found. At a local support group, you might find other youngish victims to talk to.

If you MeFi mail me, I'm happy to answer further questions.
posted by beagle at 5:49 AM on July 10, 2008 [2 favorites]

Beagle, I don't understand what you mean when you say that there is an over 50% recurrence rate after prostate surgery, even with an encapusulated tumor. If they remove the prostate, how is a cancer in it going to re-occur?
posted by eaglehound at 7:08 AM on July 10, 2008

Eaglehound: they remove the prostate, and yes, the cancer may be "encapsulated" in the sense that there is no discernable tumor growth outside the prostate itself, but, the fact is, that's no guarantee there is no cancer at all outside the prostate that survives. It only takes one cancer cell outside the prostate to restart the process. Because it grows very slowly, it can be several years before an indication of recurrence is evident in a gradually increasing set of PSA readings, but that's what happens. The recurrence is thought to generally take place in the "prostate bed", or area where the prostate was. The treatment of choice at that point is to blast the prostate bed with radiation treatment over a period of time, and to undergo concurrent hormone therapy. Diet modifications are also recommended by some treatment centers (soy, vitamin E, cooked tomato products, etc.)

Here's an article on this. It says the recurrence rate is 15 to 40% within 5 years (depending on who studies it, I guess.) But some recurrence is after 5 years, and that takes it over 50% overall.

Note this paragraph in that story:

"These results have sparked debate as to whether all patients with pT3 disease who undergo prostatectomy should receive immediate adjuvant treatment, or whether close surveillance with salvage treatment provided early upon PSA relapse can provide a similar benefit and avoid overtreating men who do not progress," the authors said.

which refers to the thinking about doing radiation and hormone treatment immediately after surgery rather than waiting for actual recurrence. They can debate which option is better, but If I were doing it again, that's what I'd insist on. Because if there is just one surviving cancer cell, chances are better that massive radiation and hormone therapy will kill it off, rather than waiting five years when there are millions of cancer cells (still a very small cancer), and trying to kill all of them.
posted by beagle at 7:50 AM on July 10, 2008

If they remove the prostate, how is a cancer in it going to re-occur?

When they remove cancer surgically, they usually try to leave as much tissue as possible while getting the cancerous part completely out. This helps preserve function in the body. Check out the wikipedia article on prostatectomy to learn about the different ways it can be done. Odds are they won't take out his entire prostate, which is why it could re-occur.

In case you haven't already found it, the American Cancer Society is a great resource for info. I'm not sure if whether they have anything specifically aimed at younger patients, but check out their resources on prostate cancer here. You can also call them 24 hours a day at 1-800-ACS-2345 with questions, and they will help you find the information you are looking for.
posted by vytae at 7:54 AM on July 10, 2008

You know, now that I posted that, I'd like to make myself sound less certain about that top paragraph. In many cases surgeons try to preserve the surrounding non-cancerous tissue, but I don't actually know whether that's the case in prostate cancer. Regardless, I hope the linked resources help, and I wish you both lots of luck.
posted by vytae at 7:56 AM on July 10, 2008

Best answer: Here's another reference on recurrence. My "50% within 5 years" is an overstatement (it's what my doctor told me 5 years ago), but this study suggests it's 31% within 10 years. So basically, the numbers are all over the lot, but the recurrence rate is very significant, it's not a minor outside chance, and the initial treatment, therefore, IMHO, should be as aggressive as possible. Also note, in this reference, that the 10-year recurrence rate for radiotherapy (which includes brachyotherapy or pellet implants) is 44%, which is much worse than the rate for surgery. Which is why I'd still opt for surgery rather than brachyotherapy.
posted by beagle at 7:58 AM on July 10, 2008

vytae, your second comment is more correct. They DO take out the entire prostate, no ifs ands or buts. The prostate produces semen, that's pretty much all it does. The nerves that control sexual function in the penis run right smack next to it, so the trick is to cut the prostate out while leaving the nerves alone to the extent possible. In some cases, they transplant nerves from the leg to graft the nerves back together in the prostate area. Chances of preserving sexual function are pretty good. After surgery, if the nerves are successfully spared, without a prostate, you can have erections and orgasm, but will not ejaculate (so, less mess, actually).
posted by beagle at 8:03 AM on July 10, 2008

I promise to stop now, but here's one more clinical report suggesting specifically that for younger patients, surgery has far better results than radiation:

At 10 years, a 6.7-fold increased risk for prostate cancer–related death was found in younger patients who received radiotherapy vs those who had surgery. Patients with poorly differentiated tumors who received radiotherapy had a 5.2-fold increased risk for mortality vs those who underwent prostatectomy. However, the researchers write, none of the interaction tests between treatment and age, differentiation, tumor stage, or period was significant.

"According to our study, surgery appears to offer prostate cancer patients the best survival chances at long term," said Dr. Bouchardy. "The effect of treatment on prostate cancer mortality at short- and long-term is only one of the aspects to take into consideration when deciding the best treatment approach for a patient with localized prostate cancer."

posted by beagle at 8:13 AM on July 10, 2008

In regards to the procreation questions, you might want to talk to Fertile Hope--they are a nonprofit organization that helps young cancer patients preserve their fertility. I don't know too much about them past their basic mission, but perhaps they can direct you to other resources for younger cancer patients.

My best wishes to Hellboy for complete remission.
posted by min at 9:31 AM on July 10, 2008

Response by poster: beagle – thanks so much for taking the time to share so much knowledge and information. It’s been a slow slog through the mountains of info available on-line, so we really appreciate your having pointed us to some very up-to-date articles. We definitely didn’t know about the significant recurrence rate statistics (!!), so that will be a good point to discuss with a surgeon.

The study on the long-term outcome of surgery vs. radiation is hidden behind a Medscape & eMedicine log-in page, but the snippet you included here gives a good sense of the gist of the article. We may still take you up on that generous mefi-mail offer, but you’ve given us lots of great information already! We can’t thank you enough.

vytae – thanks for helping to clarify the whole recurrence issue, and for posting the American Cancer Society information.

min – there’s lots of useful stuff on that Fertile Hope page, so thanks a million for directing us to it, and for the well wishes!
posted by Hellgirl at 10:08 AM on July 11, 2008

The "good news" is that prostate cancer is a very, very slow growing cancer. This means that you don't have to rush the treatment, you can take your time doing research, exploring options, getting second opinions, making decisions about freezing sperm, and the like.

Luckily I don't have direct experience, but I am told that while prostate cancer is very rare in younger men (esp. 38) when it occurs it grows more quckly than the typical old geezer prostate cancer. Supposedly this is the normal for many cancers (e.g. breast cancer in a woman of 38 vs. a woman of 68) Not to cause panic like you've got to decide upon something in fifteen minutes, but it still might be good to deal with this fairly rapidly.

Doctors or cancer survivors are invited to excoriate and pillory me if I am incorrect.
posted by xetere at 11:29 AM on July 11, 2008

Response by poster: Hey xetere - no worries on the panic front. There's nothing much that anyone could suggest that I haven't run through in my very active imagination many, many times already.

Hellboy does seem to be getting a fairly expedited run through the medical system thus far, so maybe it is generally true that young-person-cancer tends to be burlier than old-guy-cancer - we had considered that one. However, I haven't been able to find any definitive reports or studies that back up the idea. I'd certainly be interested in reading anything that might touch on the subject, though, so if you do find anything, please pass it along!
posted by Hellgirl at 6:22 PM on July 11, 2008

Please make sure you discuss this with a surgeon that really, really knows their stuff when it comes to managing prostate ca. You'll want to discuss very carefully things like doubling times, the actual locations of the tumor foci (if known, usually via ultrasound). Frankly, I suspect laparascopic surgical removal will eventually render other treatment options (other than watchful waiting) obsolete. The only issue is that many surgeons are just learning the technique and you want someone that's done at least 50-100 already.
posted by docpops at 7:14 AM on July 12, 2008

Response by poster: Laparoscopic surgery does seem to be the name of the game, docpops, with the robotic-assisted variety on the fast-track to surgical stardom in the coming years. The human kind of laparoscopy seems to be fairly commonly done in these parts, but we'll be sure to check out the surgeon's familiarity with the procedure. Thanks!
posted by Hellgirl at 6:15 PM on July 12, 2008

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