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Montanan 05-19-2013 06:46 PM

Husband recently diagnosed
My husband was recently diagnosed with prostate cancer. His PSA was 11.7 with a gleason score of 7 (4+3) and 7 cores of 12 with cancer. The highest core was 70% and then 40%, 30% on one side ( all positive on that side) and then one at 5% on the other side. He is 70. I am 58 and we have been married 28 years.
I am sure that anyone reading this understands how confusing treatment options are. I was very happy that my husband's bone and cat scan were clear but then the oncology radiologist said that there is only a 13% chance it is contained and that there are probably microscopic cancer cells outside the prostate. If that is the case, what are you supposed to do? He is leaning towards radiation, maybe both internal high dose and external. Then we need to choose if they radiate the seminal vessicles or lymph nodes. He is going back to talk to the radiation oncologist with more questions. I'm hoping to hear from some folks about your experiences.

benkam 05-20-2013 04:17 PM

Re: Husband recently diagnosed
it is very confusing i agree with you. i cant help much but i am sure some one will. my husband was gleason 7 and psa 45. he decided to stay on hormone treatment only. so far still contained in prostate. he is 65 and his choice was to have a good life with out all the stuff. some times i dont think he is right but in the end its his choice.

Montanan 05-20-2013 05:20 PM

Re: Husband recently diagnosed
Thanks so much for your response. Were you ever told that the cancer is most likely outside the prostate? This was based on gleason and PSA....

bharlan 05-20-2013 09:44 PM

Re: Husband recently diagnosed
Hello Montanan,

Hopefully Tall Allen will chime in. He has extraordinary knowledge on PCa. You can do an advanced search for Tall Allen posts.

Good Luck,

Tall Allen 05-20-2013 10:54 PM

Re: Husband recently diagnosed
Thanks for the plug, Robert ;-)

I know what a shock that must've been for both of you. But you should know that many men with a similar diagnosis, which is called "intermediate risk" do get completely cured. There are several good choices for treatment, but first you might want to have his biopsy slides sent to Bostwick Labs or Epstein's lab at Johns Hopkins which are known for their second opinions. Reading Gleason grades is more an art than a science and it pays to get a reading from a pathologist who does just prostates. Sometimes there is what's called a "tertiary grade," which is the third most prevalent Gleason grade they can find.

As for treatments, I think that surgery is only a good choice when there is a high probability that the cancer is well contained. Radiation can treat an area outside the prostate where the cancer may have traveled to. It usually first goes to the seminal vesicles, prostate bed or local lymph nodes, and they can be treated as well.

Often the top cancer treatment centers will give a "combination" treatment for those Gleason 4+3 cancers. The combination refers to:[LIST=1][*]Anti-Hormone therapy called Androgen Deprivation Therapy (ADT) - It prevents testosterone from feeding the cancer cells. It is usually begun 2 months before radiation treatment because it helps the radiation work better. It may be continued for as long as 2 years afterwards to kill any stray cancer cells.[*]External Beam Radiation, called IMRT - applied to a wide area around the prostate[*]Brachytherapy Boost - either seeds or temporary implants to boost the dose just to the prostate itself. Some radiation oncologists believe the boost is unnecessary with an escalated dose of external beam radiation.[/LIST]
Other choices include monotherapy with temporary implants or CyberKnife, treating with wider margins than usual. The advantages are extraordinarily low side effects and very high cure rates. The disadvantage is that very few places offer this, and its use for intermediate risk is fairly recent.

I think you should seek out the advice of the best radiation oncologists you can find. You may have to travel outside of Montana. The closest to you that come to mind are Peter Grimm in Seattle and Robert Meier at Swedish Hospital, Seattle. But there are many good doctors and facilities, especially at NCCN cancer care centers.

Please let me know if I can help in any way and there are many knowledgeable people on this board.

Montanan 05-21-2013 07:11 AM

Re: Husband recently diagnosed
Wow, thanks so much for your thoughts and advice, Tall Allen, and thanks to the person who encouraged you to write. What are your thoughts on proton radiation?

Tall Allen 05-21-2013 10:19 AM

Re: Husband recently diagnosed
For my comments on proton, please see post #16 on the following thread:

You'd be talking about a proton boost to the prostate with an IMRT area treatment. It may work fine, but I don't see any advantage over a brachy boost with IMRT and it comes at much higher cost.

I just queried Dr. Chris King at UCLA for details of his new protocol using SBRT (e.g., CyberKnife) as a monotherapy (without IMRT) for high-intermediate/high risk cases like your husband's. This would entail only 5 5-minute treatments spaced every other day apart.

Dr. John Hayes at GammaWest Cancer Services in Salt Lake City reports 97.5% 5-yr cure rates on intermediate risk patients using HDR brachy (temporary implants) used as a monotherapy (without IMRT). This entails just one or two overnight hospital stays.

I'll also ask Dr. Demanes at UCLA if he is treating intermediate risk patients with HDR brachy.

The reason I'd be leaning towards one of the high dose rate therapies is because they offer very low urinary and rectal side effect profiles and very high maintenance of erectile function.

I meant to ask you -- do you know what his stage was? It starts with a T, and refers to what was found on the digital-rectal exam (DRE) like T1c, T2a, T2b, etc. Also, do you know what his prostate volume was when the urologist did his ultrasound? I ask because these things can change treatment options.

If you haven't already, it's a good idea to keep your own copies of all lab reports. Even better to have them on your computer. It helps when I visit a new doctor to email the records to him before the meeting. Also, write down all your questions for the doctor and write down his answers -- it's too easy to miss something.

- Allen

Montanan 05-21-2013 10:27 AM

Re: Husband recently diagnosed
Again, thanks! The urologist thought my husband was T2b and the oncology radiologist said he was T2a or b.. I don't know the volume. I do have the pathology report but don't know how to determine volume... ?
I will be going through the sites you shared. Thanks again.

Tall Allen 05-21-2013 11:40 AM

Re: Husband recently diagnosed
If they gave the dimensions of the prostate, I can calculate the volume for you, or if you call the uro's office and ask, they can probably tell you. T2a or b is good and won't preclude any treatments.

If I haven't overloaded you already, you may be interested in reading about the results of the standard combination protocol of IMRT with a brachy boost. Ten years after treatment, there was no evidence of disease progression in 90% of intermediate risk men treated with the combo.

As I mentioned, Dr. Meier, one of the authors of that study, is now treating intermediate risk men with SBRT/CyberKnife monotherapy and has reported great results so far. After 3 years, there was no evidence of disease progression in 99% of such patients and side effects were extremely mild. You can read more details if you use the search terms "Stereotactic Body Radiation Therapy" "Intermediate Risk" ASTRO "Robert Meier"

livingatlake 05-22-2013 08:55 AM

Re: Husband recently diagnosed
Wow, Tall Allen, such good info, so concise and precise. Wish I knew you 4 years ago at the start of our journey. I would like to thank you for all of your contributions to this site and the other one. I really appreciate your the info you provide and the studies which back up your comments.


Montanan 05-22-2013 06:50 PM

Re: Husband recently diagnosed
Hi Tall Allen,
I must say that your comments are encouraging during a discouraging time. I have suggested that my husband start posting on this health board and I do believe that he will do so soon. Today, we met for the second time with the radiation oncologist, who really does seem quite capable and bright. He is quite adamant that one radiation therapy is not sufficient because of the likelihood of the cancer being outside the prostate. He does HDRT that is the 5 minute procedure, done twice in one day (and sometimes done two different times when used as a monotherapy) but he said that he would not feel comfortable doing only that therapy for my husband and would need to refer to someone else. I was surprised he was so strong in his opinion that more than one therapy is needed. Actually, both my husband and I think that the HDRT seems optimal but aren't enthused about the additional external radiation (5 weeks). Seems that the side effects are worse with the external radiation. Also, the prostate volume is 20 ML. PS Are you a prostate cancer patient- past or present? Lastly, thanks so much!

Tall Allen 05-22-2013 10:24 PM

Re: Husband recently diagnosed
He's right that not many do those as monotherapies -- you would have to go to one of the specialists I mentioned for that and travel outside of Montana.. Sorry -- I should have made it clear that they are very specialized techniques that you could probably only get from the doctors I mentioned in the West --Hayes in SLC for HDR or Meier for SBRT. If you decide to call them, you may also want to ask them (but not local doctors) about special imaging also with a 3T mpMRI with endorectal coil.

The combo therapy - IMRT or 3DCRT with an HDR boost is the standard of care. You can probably get that locally, as you've learned. It usually entails about 7 weeks of radiation treatments.

I had low risk disease and was treated via SBRT by Dr. King who developed its use for prostate cancer. Thank God, I have no lasting side effects other than practically dry orgasms (which occurs with all treatments).

Tall Allen 05-23-2013 08:24 AM

Re: Husband recently diagnosed
I forgot to mention a comment about his prostate size. 20 ml is small, which is an additional adverse feature. Sometimes doctors calculate the PSA density (PSA/prostate volume), which is .585 in his case. (The average man's prostate density is .15.) The second opinion on the biopsy and some excellent imaging may give you a more complete picture of what is going on. I know the anxiety you both must be feeling right now, but it sounds like you are taking the actions that will stop his PC.

Montanan 05-23-2013 06:03 PM

Re: Husband recently diagnosed
Hi Tall Allen,
Thanks so much for sharing your knowledge about prostate cancer. It is appreciated. Glad that you were lucky and had no side effects with your treatment. I hope my husband has the same result. My husband is researching the people and places you suggested. He did say that his calls seem to be bringing him back to the two forms of radiation offered here. I have not found any good articles on prostate volume. Do you suggest any? All the best to you and thanks for all your help.

Tall Allen 05-23-2013 08:19 PM

Re: Husband recently diagnosed
As I said, that's the standard of care. Personally, I was looking for something that had a better sexual SE profile, which is why I narrowed it down to SBRT or HDR brachy monotherapy for myself. But everyone's different in what they are looking for out of therapy. You have to assess that for yourselves.

I'm sure if you search for "PSA density" you will find lots of info on the subject.

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