Looking for your advice please

mikeny · New User Joined: 05 Jun 2009 Posts: 3

Hey all:

2009 has been a very rough year for me. Back in March I found out my 58-year old dad has stage 4 non-hodgkins lymphoma, which has turned into stage 1 CLL.
After numerous tests, visits to the doctors, etc, he is a "wait and see" candidate with checkups every 3 months.

Things finally settled down come May... but after a routine doctor visit, the DR ordered a biopsy because his PSA level was a bit elevated. Received the results this week, and he has prostate cancer.
Specifics are:
Stage P1C.
Gleason Score = 3+3
Latest PSA test was Jan 2009 @ 3.87
May 2005 PSA = 3.18
May 2004 PSA = 2.16

2 out of 12 cells biopsied were cancerous.

From my quick research, it appears based on the Gleason score this is intermediate and something should probably be taken care of. It seems that the PSA is not increasing terribly fast but it's definitely increasing.

The doctor recommended having the prostate removed with surgery. Right now my dad is looking at having robotic surgury done at CCE Prostate Cancer: Sloan-Kettering.

I would like to know with all the knowledgeable and experienced people here: What do you feel the next best option would be based on the diagnosis above? I looked into HiFU but that seems too skeptical at this point. What about Cryosurgery?

I'd appreciate the feedback!

Mike

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

HIFU has shown promise in low-risk cancer, and Gleason 6 is on the lower end of the risk scale.

A lot of men, like my own uncle, who have PSA that is stable or very slowly rising, and Gleason 6 cancer decide just to keep a close eye on it for a while. This is called active surveillance--an older term is watchful waiting. It is NOT--I have to emphasize this point--"doing nothing" as some people think. It's monitoring PSA closely and doing periodic biopsies as needed.

I would think that stage 4 non-Hodgkins lymphoma is a much, much bigger concern than Gleason 6 PCa, with a very slowly rising PSA.

You didn't say what age your father was. At a certain age, say, 70's and beyond, most men have prostate cancer. Yet the vast majority of them will never be bothered by it.

You ask what the next best option to surgery would be--in my mind, there are a few options for a man who is in stage 4 non-Hodgkins, and stage 1 chronic lymphoditic leukemia, who also happens to have Gleason 6 prostate cancer.

As a layperson--these are my non-qualified opinions only--I would consider (not in any particular order):

Active surveillance
HIFU --would require enrolling in a clinical trial in the U.S., or travelling outside U.S.
Brachytherapy (seeds)
External beam radiation--especially protons. As a primary treatment, proton beam therapy is famous for its low rate of side effects.

In spite of the fact that my father was treated (cured, it appears) with cryo, it's not a serious contender in my opinion. It has failed to live up to its early promise.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

mikeny · New User Joined: 05 Jun 2009 Posts: 3

Thanks replicant for the info (and congrats on your low PSA and not increasing!). My father is 58 years old, sorry I forgot to mention that!

The specific lymphoma he has is slow growing (at least it appears that way). It is small b-cell... 3 different lymphoma specialists have said he can live many years without need for treatment.

Out of the options you listed (primary HIFU and radiation), would you consider any of those over surgery as a first treatment for PC?

If proton beam therapy is done, if there is still cancer after can robotic surgery be used next? I hear that radiation damages surrounding tissue... is that true for this particular therapy? Are side effects from surgery that bad to consider alternative treatment?

Also, I thought I would put this out there:
- It seems as if his PSA is fairly high already at 3.87 when it should be < 1. What would you say is an alarming PSA level where something should be done?
- He does have some symptoms with the PC I believe. He was on flowmax for trouble starting flow when urinating. That sounds like a symptom of the PC for me.

Thanks,
Mike

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

That is a drawback to any kind of radiation--seeds, external beam (whether protons or photons). Salvage surgery can and is sometimes done, but it's far from routine. The surgery is technically challenging and there are high rates of very bad side effects. So you are correct--that is a "con" to radiation. But there are pluses as well. Chiefly--it ain't surgery. There's nothing to recover from. There are side effects possible, but they are fairly mild and temporary compared to radiation in the past. And with protons, men report an extremely low level of side effects. That is not the case with surgery.

There has been a lot of discussion about HIFU--just search this forum and you'll see we've been into it quite a bit. I'm sure notme will fill you in on his experience in Mexico. A benefit of HIFU is that it can be repeated, and having HIFU does not rule out other kinds of treatment later.

If I were you, I would go straight to your nearest bookstore and pick up "Patrick Walsh's Guide to Surviving Prostate Cancer" (2007 ed). It will help you with a lot of these questions, although HIFU is not covered in-depth.

I wouldn't want to impose any more bias upon you than I already have by suggesting one treatment modality is best for your father. He really needs to decide that himself, armed with plenty of information. What's best for one man is terrible for another and vice versa.

Given what you just wrote about the low threat level of his other disease, I would not rule out surgery. But I would give due consideration to all the other options, as you seem to be doing.

Good luck.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

johnw100

"If proton beam therapy is done, if there is still cancer after can robotic surgery be used next? I hear that radiation damages surrounding tissue... is that true for this particular therapy? Are side effects from surgery that bad to consider alternative treatment?

Also, I thought I would put this out there:
- It seems as if his PSA is fairly high already at 3.87 when it should be < 1. What would you say is an alarming PSA level where something should be done?
- He does have some symptoms with the PC I believe. He was on flowmax for trouble starting flow when urinating. That sounds like a symptom of the PC for me. "

Proton a different process: you can find more specific information on it at the "protonbob" website. Further information on it along with other treatment options and stories from men who have used the various treatments is available at the "yananow" site.

All treatments have side effects: it often comes down to which side issues are the most acceptable as there can sometimes be several options that can be equally effective.

THE most important consideration, regardless of which treatment is adopted is selection of a top doctor. For example a top surgeon will give you the best chances of a good recovery and outcome with limited side effects.

There is no such thing as a "normal" PSA level: various things can affect it including prostate size. Main issue is not an individual figure, but the rate of change in elevated readings.

An enlarged prostate can also produce symptoms: symptoms like frequency and urgency are often a result of this. PC often has no symptoms, especially in the early stages, but men can and often do have both PC and and enlarged prostate.

If you havn't already done so, it would be worth obtaining a print out of the biopsy report which usually contains additional worthwhile information.
Biopsy readings are subjective: what looks like cancer to one person sometimes looks more normal or a different grade to another. The slides should be sent to an expert pathologist for a 2nd opinion. This will confirm where you stand and could influence your treatment decision.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

I would second what John wrote. Sorry, but I must have skipped over the part about his PSA.

You may be thinking because of my post about my PSA being less than 0.1, that it's a normal number. As John wrote, there is no normal number. It would be unusual for a man who had never been treated for prostate cancer to have a PSA less than 0.1. Mine is that low only because of surgery and radiation. I don't have a prostate to produce PSA any longer. John's also very correct that the number itself isn't the important part, rather, what's important is the trend over time.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

davidinvan · Posted: Sun Jun 07, 2009 10:48 pm Post subject: Another Option

I'm new to this forum and I have another option for you - it's called triple blockade. Check it out at compassionateoncology.org.
I've battled PC for more than fourteen years - surgery, radition (five times), CAAT therpy and more, so I've had my share of experience - this clinic and Dr Bob Leibowitz are without a doubt the best.
Best wishes

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

Mike's dad has what appears to be low to moderate risk, probably localized cancer. The Han and Partin tables look great for him, as does the UroPredict tool on the Bostwick labs site. If it is localized, he has an excellent chance of a cure through any of the treatment modalities we've discussed.

Triple blockade is a form of hormone therapy, or androgen deprivation. Androgen deprivation is standard care for someone with advanced disease, but not for someone with early, localized, curable disease. Androgen deprivation is palliative, not curative, and it carries with it a host of serious side effects. It is a chemical form of castration--although not permanent, the effects while on the therapy are the same. I think it's a great option for someone with advanced disease, but a terrible choice for a youngish man who is likely within a window of curability.

Androgen deprivation might, however, be an appropriate adjuvant treatment, to shrink the prostate if necessary prior to brachytherapy, for example, or in conjunction with radiation, since some past studies have indicated an advantage to androgen deprivation + radiation, over radiation alone.

Standard disclaimers apply here--I'm just a layperson who is not qualified to give advice. Mike, you should investigate this on your own, and have your father do the same, if you think it is a viable option.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

I agree. I would never consider a primary treatment that is guaranteed NOT to cure me over one that offered a decent chance of a cure.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

johnT · Senior User Joined: 27 Apr 2009 Posts: 173

According to the Prostate Cancer Research Institute the recommend treatment for a Gleason 6 with a low PSA is "no immediate treatment".
This is considered a low grade cancer and can be cured by any local treatment. Waiting can avoid the side affects if one has to be treated down the road. There is a small risk, 5%, that it will spread beyond the window of cure. So this is a risk, reward decision, as all treatments have side affects that can be permanent.
If you choose a local treatment any one of many will work for low grade PC, so the the side affects of the treatment option is important in the decision.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

davidinvan

As you stated, the cancer is "probably localized", if not then there are of course a whole new set of issues. Surgery presents it's own set of problems - incontinence, impotence, blood clots etc.. Triple blockade when used intermittantly ( continuious use of proscar is a must ) to me is is a viable option to surgery. Just my opinion.

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

David, Do I understand you to say that with the likelihood of curable cancer you would op for a treatment that can not possible result in a cure and scrap the idea of a "primary treatment?"

Why would you do that especially when Hormone Therapy carries as many side effect as any primary treatment that could cure the disease. You get the negative side effects with NO chance of a cure.

If I was not interested in a cure I would do as JohnT and opt for vigilant surveillance with absolutely no side-effects.

????
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

mikeny · New User Joined: 05 Jun 2009 Posts: 3

Thanks for all of the insight. You all have been very helpful.

It looks like my dad is leaning towards robotic surgery to have the prostate removed. He has talked to a couple people who had this done and they don't complain of any side effects, and he would rather have it out for peace of mind rather than wait and see. At least 2 different doctors he has spoken with suggested doing something about it now, opposed to waiting. I think this may have something to do with his other cancer - might as well take care of it now while he is still "in good health".

So it's either way until August/September to get into NYC, or take care of it in early July locally. I think he will probably end up doing it locally in Rochester, NY.

johnT · Senior User Joined: 27 Apr 2009 Posts: 173

Hawk,
I agree that Hormone Therapy may not be an appropriate choice for localized PC because the side affects are pretty bad. I once considered this as an option for primary treatment because there is data that shows a high does of ADT3 for 13 months will cure localized PC. I don't know if "cure" is the right word, but low and stable psa has been sustained for 10 years without additional treatment. Liebowitsz has a lot of data on this protocol and my oncologist confirmed that in many of his patients ADT3 resulted in stable PSAs for a number of years without futher HT or other treatments.
There are a lot of reasons not to use this as a primary treatment mainly because the data sample is much smaller than the proven surgical or radiation options, but it is still a valid option for primary treatment for those who wish to try it. All other options are still available if it doesn't work.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

John,

Interesting info. Thanks for the post.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

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