Close to Starting Treatment w/Second Thoughts

I'm sorry to re-post this again and don't expect anyone to tell me what to do, but am getting anxious with IMRT treatment coming up in June. I had originally leaned towards Brachytherapy in February at diagnosis with small GL7 (4+3) and IMRT only if there is evidence that PC has left the prostate via an MRI or CT before treatment. Then, when I saw Dr. Robert Lee at Duke Cancer Center in March, he recommended IMRT alone that would get the prostate and areas outside it, as necessary. My other doctors who initially recommended Brachy agreed with Dr. Lee's assessment. Dr. Lee also felt I would do fine with having IMRT at our local cancer center. After doing more research reading Scholz and the Seattle PCRSG review, I'm leaning back to seeds since the dose is much higher in the prostate. Maybe I saw too many doctors. I just had a follow-up with my family doc, and he said maybe I should just do intermediate HT (ADT2), and watch PSA. What a mix..... 

Irmaly, if you are around, any comments on local IMRT since we both live here? Dr. Mack seems very good, but I don't know what to ask about their equipment etc. How is your husband doing?

Robert 

Like you, I was unsure about my treatment options with the clock winding down. In my case, I had a pending surgery date only two weeks away. The best info I got from this forum was to be in control and don't let the medical deadlines dictate your decisions.

That said, it's tough since there is no medical consensus (as you're finding out) and the more opinions you get, the more confusing everything is. To the extent that you can, sift through the advice and try to determine what factors are most important for YOU. Since there's so much diversity of opinion out there and no guarantees of any treatment, I think there's value in going with what speaks to you.

Regardless, I think you'll do well and please, keep us posted. All the best to you on a most difficult decision!

Michael

Robert,

Once again you can see the value of this forum. When you posted you had three options and you couldn't decide between them. But now, with the help of your fellow members, you can narrow those three options down to a mere five.

Time101,

I'm curious, have you had a PSA test since you started Lupron?

If your PSA level is reducing, you may do very well to take some time before you make any decisions that you are not 100% comfortable with.

Unless I am missing something with your history, Your 4 month Lupron shot should be reducing the size of the what appears to be a relatively low tumor load.

Perhaps you could ask for an endorectal coil MRI which would show the current state of your prostate and you could have another one done in a couple of months to see if the tumor shrunk.

Knowing if the tumor shrunk, might make your treatment decision easier. If it shrinks you may be more comfortable with less radiation and that could be a wise choice due to potential side effects both short and long term

Whatever you do... make sure that your choice is something you are 100% confident in.

Very best of wishes to you in what ever treatment you decide on.

Edited for serious typo's.

Post Edited (MsWorryWart) : 5/13/2013 10:10:05 AM (GMT-6)

We went through the same decision-making process and opted for IMRT alone (done locally) for my husband's G7 (3 plus 4) cancer. Since he had small volume cancer and a small prostate, we concluded IMRT would be a safe bet, with less chance of urinary side effects, which he felt he could just not deal with on the job.

His experience was easy with no side effects during the procedure, a brief (several days) painless rash on his backside at the very end of treatment, and no side effects in the nearly two years since other than a month or so of very occasional 'wet farts'. He did experience the scary PSA 'bounce' for two consecutive blood draws, but it then dropped again. He is very glad he chose IMRT, and was able to get through the entire business taking very little time off from work.

The local radiologist was young and trained in Georgia. Equipment was up to date. He spent tons of time with us and answered questions honestly and realistically. Most of his patients, though, were undergoing SRT for failed surgery. We felt comfortable with him.

I wish you peace in your own decision making! It IS hard.

Juliet

Peter, my friend, "a mere 5 options now"...LOL ...that made my Monday. Laughing is the best medicine...THANKS for that.

Yooper, Dr. Lee trained with my local RO and highly recommends her, as do two other docs at Wake Baptist. Not sure yet on her success record. It would seem obvious that a Duke Center vs local cancer center (Seby Jones) may be more technically advanced, not sure, but won't have to stay away from home 7+ weeks and leave wife alone in mountains with 5 dogs to feed...even though I have a free place to stay. So far, I feel confident - she did my wife's rad for BC. But, good point to again think over - thanks!!

MsWorrywort, no I have not had PSA after nearly 3 mos. HT on 5/27. Scheduled to have one June 9. Also to have physical with RO here on 5/29. Hopefully HT is working. If not, it would have to be a rare cancer.

Yep, the closer you get to treatment jitters and second guessing may set in, for me anyway. All the docs I saw said I should do well with any of the 5 options...I mean 3. Thanks to all fellow members for your caring and advice. It means a lot to me. You're the best!!!

Robert

NC   

MrsWW,

you said...
Whatever you do... make sure that your choice is something you are 100% confident in.

Being possibly the only person on earth who has knowingly met both of you I am in the position to tell you that what you suggest just isn't going to happen. Robert is an inveterate second-guesser. All of the treatments he is looking at offer good odds of a cure with acceptable levels of side effects but there are some trade-offs and none of them comes with a guarantee. That's going to bug him, no matter what he chooses.

Robert,

She's right that being on ADT buys you time to waffle. But do remember that there comes a point of diminishing returns. Sooner or later you will find that another week of thinking about your choices doesn't get you any more comfortable with them. That is the point where you should pick a machine, drop in a coin and pull the lever.

And in your deliberations, don't forget that your ADT changes the percentages for most of the treatments -- IMRT plus a period of neoadjuvant ADT has better PC-specific survival rates at 5 and 10 years than does IMRT alone. ADT has similar effects when combined with most primary therapies.

What are the AUA guidelines?
I would follow those. They're the best for you.

Hi, Time! Yes, I'm still around. Husband did great with IMRT under Dr. Lee's care. First PSA test after treatment was undetectable. Next test is in July. He feels absolutely great with no real side effects other than those still lasting from the Lupron, which he is no longer taking. Those side effects are diminishing. We are both pleased as punch.

We never even considered treatment locally. Perhaps all would have been fine, but our experience here locally had not been great, and by the time we reached Duke. we were so happy to get somewhere with a very good doc, we had treatment there. Hubby drove down every Monday AM, stayed for treatments, then returned on Fridays around noon. While I know everyone is different, he never experienced any fatigue.

I, too, wanted Brachy, and I challenged Dr. Lee on that option. Hard. In the end, I decided perhaps it was time to trust him. Here are some excerpts from our email exchanges on this:

Dear Dr. Lee, Can you weigh in?
"Combination radiation therapy: Some radiation oncologists are
combining EBRT and interstitial seed brachytherapy for patients
with stage II or III cancers.... Researchers recently evaluated the effectiveness of brachytherapy plus EBRT versus EBRT alone in the treatment of over 300 patients with advanced localized prostate cancer. Half of the patients received treatment consisting of both brachytherapy and EBRT and the other half received EBRT alone. Five years following treatment,
high PSA levels existed in only 33% of patients that had received the combination of brachytherapy plus EBRT compared to 56% of patients that received EBRT alone. Since high PSA levels are an indication of the presence of cancer, these results suggest that brachytherapy plus EBRT may be more effective than EBRT alone in the treatment of advanced localized prostate cancer."

His response:

...there is no strong evidence to support the statement
that external beam plus brachy is better than external beam alone. I
have done both and there is no obvious difference in cure rates in
my experience (and I am concerned that there may be more toxicity
with the combination; see attached paper)

My response back:

....The information I quoted was from a 2006 study with a 15 year BRFS.... (I attached the study)

His in return:

I know the Seattle group very well; Drs Blasko, Grimm and Sylvester
are all good friends and truth be told they taught me how to do a
prostate implant. I agree that external beam plus brachy is associated with less recurrences if you compare the Seattle results to results with
external radiation alone in the late 1980's-early 1990's. In the last
decade it has become possible to increase the total dose achieved with
external radiation using image-guidance and intensity-modulated radiotherapy (IMRT). As such I present external alone and external plus brachy as equivalent provided contemporary methods are used. I remain concerned about the possibility of excess toxicity with the combination.

irmaly: My radiation oncologist said the same thing about combo brachy/ebrt, and he does a lot of brachy.

He concluded my best option is external beam only, pelvic field 40-50 Gy plus prostate boost to 79.5 Gy by IGRT with IMRT.

Irmaly, glad you saw my post. Thank you for your detailed response!

I am at the final decision point and am going to stick with IMRT. However, have to make final decision on doctor and treatment center. I have a physical scheduled with Dr. Mack on 5/29 so not much time left. Questions:

1. I don't have Dr. Lee's email so will have to call his office mainly to see when I could get on his schedule. You answered the treatment questions. Dr. Lee said they have all the IMRT calculations when I saw him.

2. Dr. Mack seems to be a very good RO. Think I mentioned that Dr. Lee said if his father had PCa and lived here, he would be fine with Dr. Mack doing the IMRT. Strickly confidential - is there anything I need to know that you know:)?

3. Did Dr. Lee do an MRI to look for cancer outside the prostate - lymph nodes etc.? They don't do MRIs here. Closest is Baptist. Dr. Mack is to do 2mm slice CT...I prefer MRI to avoid more rads.

4. Does your husband go back to Duke for PSA tests or here?

Thanks again,
Robert

Time,
Well heck! So many choices with no guarantees. It sounds like you have an excellent doctor (dr Lee) and have an excellent testimonial from one of his patient's spouse (Irmaly)..She didn't gamble and had imrt with a short course of hormones. I'm glad that her husband is doing fine with no incontinence or ED..Seeds won't cover the same area outside the prostate that imrt will so if you opt for that treatment alone there is always the chance that ece will be present and raise its ugly head later..Maybe imrt is over kill but coupled with a short course of hormones it is as close to a guarantee as there is..
Seeds with radiation and maybe hormones might get the job done as well but seems rather complicated with unknown se's...My motto is "do it right the first time"..In any event, I agree with the other members to not do anything unless you are comfortable with your decision..
I'm sorry that I didn't "beat around the bush" and realize that I tend to be rather blunt and opinionated...Whatever your decision, all the best to you!
Bill

Time,
If all else is equal, you may want to consider the time factor (no pun intended). In my case, I would have needed to travel to the clinic (a 70 mile run one way) 40 times if I had chosen beam radiation. With brachy, I spent one night at the clinic and then went back for a 6 week checkup.