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Update on my "confusion"

AussiePup's picture
AussiePup
Posts: 19
Joined: May 2011

This is thread number 2 which I started to make it easier for respondents. If you want to see the original thread from a few days ago, it is http://csn.cancer.org/node/217641

To recap my situation … I will be 73 in a couple of weeks and during a routine physical, my PSA was 5.2, which led to a visit to the urologist and a biopsy. I had 1 core out of 12 that had cancer with a Gleason 8 (4+4). It is a stage T1c. I had a consult with the surgeon, who thinks that RP is the best course of action, but they require that I also consult with a radiation oncologist. He also advised that I was not a candidate for brachytherapy, as it is only for low risk (Gleason 6) cancers but that external beam radiation was an available option for me. He advised RP, due to my excellent health and fitness at my age. He also advised that the hormone therapy usually given along with the radiation has unpleasant side effects.

I have been researching PCa utilizing the internet resources and talking to survivors about their experience. Some of the posters on this site like Mrs PJD, Kongo and others have been very forthcoming with helpful info about their experiences that could be related to my situation. It has been deeply appreciated. My wife has also read every post and is present at my appointments.

Yesterday, I had my consult with the radiation oncologist. Some of your posts, as well as my research had gotten me excited over the possibility of either HDR Brachy or Cyberknife. He dashed both of these hopes, saying that they were not appropriate for my Gleason 8 cancer, as there was not enough controlled study data to lift them out of the experimental category, at least in an academic teaching hospital like University of North Carolina. There is also some question of Medicare paying for these treatments, especially the CK. He made a pretty strong case for a combination of androgen deprivation therapy, which would be administered by an injection in the buttocks every 3 months for 2 1/2 years and about 10 minutes of external beam radiation 5 days a week for 8 weeks, starting a week after the first injection. They would also implant 3 marker seeds (he likened these to gps satellites) via the biopsy needle. These would provide very accurate placement of the radiation by compensating for any prostate movement due to air/gas in the rectum and/or rise and fall of the bladder. He said this is a feature that a lot of hospitals doing radiation do not have available yet.

He said that if I were younger, then RP would definitely be the recommended treatment, but due to my age, he believes that his way is the best. He did explain the side effects of the hormones, which are not nice, but I believe that I could live with them for 2 1/2 years. Some of the side effects are hot flashes, fatigue and libido shutdown.

There is a lot more info that I could tell you, but I have given you what I believe to be the salient points. What I would like is to hear from some that have had the radiation treatment that I have described and their results and impressions, especially the logic they used to choose this course of action. Most of the posters that have responded to me are younger than me. I believe that my age has to be considered along with any quality of life issues.

The bottom line is that I may still be confused, but I'm definitely less than I was 2 weeks ago! I guess that's progress!

Thanks so much,

Martin

MCinNC
Posts: 32
Joined: Sep 2010

Hi Martin. I'm 57, 1 of 12 cores, Gleason 6 and have been on Active Surveillance for 9 months - so our situations are a bit different. However, as my nickname indicates, I live in NC and have made the rounds at both UNC and Duke, so I thought some of that local knowledge may be beneficial to you. Each has a "clinic" format where in one visit you can see a surgeon, radiation oncologist, and medical oncologist. In both clinics the 3 doctors confer and give you recommendations from the "group." Sounds like you've already talked to specialists at UNC, but if you're interested, you could do the same at Duke in one visit. I thought it was very helpful to get input from both and see what was agreed upon and what wasn't.

By the time I had finished meeting doctors and considering options, my favorite surgeon was Dr. Pruthi from UNC and favorite radiation oncologist was Dr. Lee at Duke. Both are experienced and highly qualified, but both also were the best communicators in their respective fields that I ran into. I liked each of these a whole lot better than the other surgeons and radiation specialists that I met.

The confusion you mentioned is par for the course. I'd encourage you to keep at it - gathering info and considering options - until your brain tells you "no mas." There is a saturation point after which more info is no longer helpful and you're ready to make a decision. I wanted as much info as possible to choose a treatment option - and worked really hard gathering and analyzing things for about 8 weeks, but there was eventually a limit to that for me. Seeing a lot of doctors was part of my process. Some I really didn't like at all. Some were not particularly helpful in choosing one option over another. But the process was helpful and I became more adept and more assertive in concentrating the doctors on the issues I felt were important rather than just listening to their usual speeches.

I will be having another biopsy this summer, and if I need to move forward with treatment my likely choices would be RRP with Dr. Pruthi or perhaps CyberKnife. UNC does CyberKnife and Duke doesn't, so I'll have to talk further to the UNC folks about that. If I was considering radiation therapy other than CK, I would definitely be considering Dr. Lee and the folks at Duke.

All this is obviously based on my impressions and experience, some subjective some objective, and yours may differ. But I would close by just encouraging you to visit both hospitals if you're in that area - it really did advance my decision making process considerably - and you may stumble across someone in the process that may really make an impression on you. Having the highest level of confidence in the doctor that will be treating you tends to clear away some of that fog and lower your stress level!

Best of luck!

Mac

AussiePup's picture
AussiePup
Posts: 19
Joined: May 2011

Hi Mac,

I certainly agree with your impressions of Dr. Pruthi, as both my wife and I liked him and what he had to say.

I was supposed to see the surgeon and radiation oncologist the same day, but the radiation oncologist had to be out of town and rescheduled. Not sure what a medical oncologist is, as have never been referred to one, but it's a question that I will be asking tomorrow!

I really thought CK looked like a great option, but as I said it's not an option for me. In fact, I have since found out that the company itself will not allow a high risk patient to use the treatment within the bounds of their normal data research, etc.. States this on their website.

The one thing that UNC has going for them with regards to the radiation treatment is the implantation of the 3 seeds to guide the radiation robot. My understanding is that Duke does not have this yet and it definitely is a plus.

The big differences in our situations are age and risk grade. You definitely have some options available to you, that I don't.

I definitely want and hope to hear from some that are closer to my age and available options and how they arrived at whatever option they ultimately chose.

I'm glad that you have validated our faith in Dr. Pruthi and wish you continued good biopsy results that may allow you to continue with the AS.

Please stay in touch and if you're around Chapel Hill, maybe we can get together? Feel free to send me an email, if this interests you.

All the best to you,

Martin

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Martin,

I'm glad you were happy with the results of your recent consultations although I question your doctor's quick dismissal of HDR Brachy and CK as not having enough data to lift them out of the experimental category. In particular, HDR Brachy has been around more than 10 years and there is an enormous body of evidence available pertaining its results. CyberKnife now has more than 5-years of data and, by the way, is approved for use by Medicare, the VA system, and most insurance companies now. (And despite the suggestion your doctor made, HDR Brachy is also covered by Medicare although I understand there are varying degrees of hassle depending upon which region of the country you live). If you do some keyword searches in the Pubmed data base (http://www.ncbi.nlm.nih.gov/pubmed/) you can find an enormous amount of data. BTW, CK is not used for Gleason 8 cases although there are some trials underway where they are doing CK boost treatment in conjunction with IMRT.

In any event, it is important that you have confidence and faith in your doctors and if you have found that at this point, you are well ahead of the game. To me, one of the most frustrating aspects of dealing with prostate cancer is the wide range of divergent opinion from so many of the so-called experts in the field, each of whom tend to speak authoritively on their point of view. At the end of the day it is left to us laymen to sort out what is the best course for us to pursue.

The IMRT radiation treatment your radiation oncologist told you about is a very common (if more expensive) treatment for low and mid-risk prostate cancer. Like CK, it is highly accurate delivery system and when used with fiducial tracking significantly reduces radiation to areas outside the prostate. Hormone therapy is often used with IMRT but you should also be aware of the common side affects associated with Lupron. There are serval postings on this forum that highlight the reaction to Lupron which range from very mild to devastating.

If you do proceed with the IMRT treatment with fiducial placement, I hope you read the article I posted earlier about dangers associated with transrectal prostate biopsies. Implanting fiducials carries essentially the same risk if it is done the same way. Some men on this forum (you may wish to read of Silverfox's experience with sepsis after fiducial placement) have suffered significant ill effects from needle penetrations in the prostate. In my own case, when I had fiducials placed for CyberKnife treatment, I insisted that the fiducials be placed via the perineum which does not involve a transrectal excursion. It is also done via ultrasound and is just as accurate as the most common (and easiest for the doctor) method of transrectal fiducial placement.

Best of luck in your ongoing journey.

K

AussiePup's picture
AussiePup
Posts: 19
Joined: May 2011

Kongo,

The last paragraph of your post made me sit up and take notice, for sure! Scary stuff! I will be checking out the references you cited, as well as some others. Thank you for bringing this to my attention. I will let you know what I find out, etc..

Regards,

Martin

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I took one shot of Lupron followed by the 40 radiation treatments over 7 years ago. At the time of diagnosis I was given a 50% chance to survive 2 years and a 2% chance to live 10.

I chose this because it was the only treatment I was willing to do and surgery is not an option if the cancer has spread and it was obvious that it had. I believe I would still be alive if I had done no treatment but can not be 100% sure.

The side effects of the Lupron are the worst of it as libido was quickly gone and never came back. The hot flashes are very real but not that big a deal and only go on for as long as you take the shots plus 6 months or so.

Had I been 73 instead of 52 I seriously doubt that I would have taken any treatmenrt at all. The progression of cancer at 52 is much faster than at 73.

I have taken a very positive attitude about my problem and got all the stress out of my life. I have a very compassionate wife who makes my life the best it can be for someone with a terminal illness. These are the kind of things that let you live longer, not a bunch of man-made drugs.

If your cancer has not spread then you need to make a plan of attack. My cancer is now present in the form of many tumors throughout my body, mainly in the spine and hip bones. The pain is horrible and must be treated. My oncologist got me into the hospice program and all my treatment for pain is provided for free.

I am still working a couple part-time jobs and plant a garden and play golf. It is not easy to do any of it but to give it up would be harder right now. I'm sure the day is coming that I will not be able to stand up but it's not today. And that is all I can ask for.

Julietinthewoods
Posts: 15
Joined: Dec 2010

Martin, I'm glad you got back to let us know about your latest consultation. I just wanted to tell you that my husband (Gleason 7, but higher PSA than yours) had nine weeks of IMRT with fiducials. It was his only treatment, with no hormone therapy thought to be necessary in his case. So, although I can't tell you much about the side effects of HT, I can at least tell you how the IMRT played out.

My husband had no issues at all with the marker placement, and after reading the latest news about the risk of sepsis with biopsy, I know we can be very grateful. As far as the procedure itself, he said it was much easier than the two biopsies he had. I don't get the impression that it is as rare as your doctor had implied, but I could be wrong. Anyway, it was an easy and very quick procedure. You will be given antibiotics much as you were before your biopsy.

IMRT was easy. He had no side effects at all until the very last treatment when we noticed a burn across his rear end. He said he couldn't even feel it, and the red mark gradually disappeared. He never experienced bladder irritation or any bowel symptoms or fatigue, although you should be aware that some men do. Also, some side effects of radiation appear later, and you will want to have your doctor explain all of that to you. All in all, the incidence of most side effects seems to be low.

The clinic he chose for his treatments was very nice, and the techs always helpful and friendly. It was a quick in and out situation as well.

Wish you luck with your decision-making!

Juliet

AussiePup's picture
AussiePup
Posts: 19
Joined: May 2011

Thanks Juliet,

Your info is encouraging, although from what the doctors tell me, most of the bad side effects are associated with the hormone treatment. When I asked about men who have IMRT as primary treatment without hormones, he said "These are men with low risk prostate cancer. In intermediate risk prostate coancer, the standard of care is 6 months of androgen blockade. I was told to expect Lupron injections every 3 months for 2 1/2 years. The side effects are kind of scary. I hope to make a decision regarding surgery vs radiation by the end of the week and will post what I decide.

Thanks again to all who have responded and I wish you all continued success with your health and all other endeavors.

Martin

Julietinthewoods
Posts: 15
Joined: Dec 2010

Martin, not sure what to make of your doctor's comment, since my husband's cancer, as a Gleason 7, is considered 'intermediate risk'. At any rate, HT was not recommended for him and IS for you. One thing I have learned from all of my reading, however, is that some men have lots of side effects from HT, but others say it was very tolerable. We can hope for good luck for you.

Juliet

mrspjd
Posts: 693
Joined: Apr 2010

Hello again Martin,

Glad that you found the previous info in thread #1 helpful. Your latest consult update is appreciated. Below, with comments, are several links you may find interesting/helpful in your research and are related to the topics discussed in your posts.

HDR-B Long Term Study Data (Hypofractionation):

You may be interested in reviewing the following study data:
Int J Radiat Oncol Biol Phys. 2005 Apr 1;61(5):1306-16.
High-dose-rate intensity-modulated brachytherapy with external beam radiotherapy for prostate cancer: California endocurietherapy's 10-year results:
http://www.ncbi.nlm.nih.gov/pubmed/15817332

Adv Urol. 2009:327945. Epub 2009 Sep 1.
Brachytherapy for prostate cancer: a systematic review:
http://www.ncbi.nlm.nih.gov/pubmed/19730753
http://www.ncbi.nlm.nih.gov/pubmed/18755623

Some definitions (source: http://www.prostate-cancer.org/pcricms/node/35):
~hypofractionated: a radiation treatment that is divided into fewer individual sessions (but correspondingly higher doses of radiation)

~HDR (high dose rate radiation) aka HDR-Brachy: radiation delivered by temporary insertion of radioactive Iridium wire into flexible needles placed in the prostate through the perineum.

HDR-B is one form of hypofractionated radiation treatment (SBRT is another, but with the exception of some very limited trials for intermediate risk PCa, SBRT is currently only used for low risk PCa). Because of the HDR-B tx course to the prostate and seminal vesicle, PJD’s IMRT txs were five weeks/25 txs (not 8 wks of 40 txs), during which time the prostate bed and local lymph nodes were tx’d. Total Gy from the HDR-B and IMRT was approx 81 Gy.

High Dose IMRT:

Ten year high dose IMRT study Sloan-Kettering link:
http://www.ncbi.nlm.nih.gov/pubmed/21061333
and a related article on the same study:
http://prostatecancerinfolink.net/2010/12/13/10-year-outcomes-after-high-dose-imrt-for-localized-prostate-cancer/
Staging definitions which may be helpful:
http://www.nccn.com/understanding-cancer/cancer-staging.html
http://www.nccn.com/treatment-summaries/prostate-cancer.html

ADT:

ADT txs frequently receive a “bad rap,” not only on this forum, but also from many medical “professionals.” Sadly, there are many posts and stories from men whose lives have been negatively impacted by the sometimes devastating side effects of ADT tx. IMHO, many (not all) of the ADT side effect “horror” stories often relate to continuous uninterrupted use of ADT, sometimes over a period of 12-24 mos or longer. Of course there are the outlying cases of men receiving only one ADT injection or tx course and never recovering from the side effects. However, there are other men (perhaps the silent majority?) who have tolerated ADT well, PJD being one of them. Before deciding on any ADT tx, one must thoroughly research and understand all possible short and long term side effects and weigh the risk vs benefit for their lifestyle, QOL, and PCa staging.

When considering ADT as a tx for certain higher risk PCa staging, there appears to be emerging thought & info in the medical community to support the same beneficial outcome from an intermittent (or short course with RT—see study data below) ADT tx protocol vs one of continuous uninterrupted long term use. ADT can consist of different drugs and drug combinations as well as length of time on and off (vacation) protocols, aka intermittent ADT. A closely monitored intermittent ADT tx approach may allow testosterone (T) and DHT to be recaptured during the vacation/holiday periods which may aid in reducing or limiting side effects.

Dr. Charles “Snuffy” Myers, a nationally known oncologist (who has PCa) has an excellent and well-regarded website. Here’s a link to his presentation on intermittent ADT:
http://askdrmyers.wordpress.com/2010/07/27/intermittent-hormonal-therapy/
You might also take a look at a recent study (previously posted on the PCa forum March 29) published in the March 24, 2011, online edition of The Lancet Oncology titled “Short Course of Hormone Therapy Boosts Prostate Cancer Survival, researchers found.” The link is:
http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(11)70063-8/fulltext
A related article:
http://health.usnews.com/health-news/family-health/cancer/articles/2011/03/25/short-course-of-hormone-therapy-boosts-prostate-cancer-survival-study

If you haven’t already done so, I suggest you send your biopsy slides out for a second opinion to a respected and well known PCa path lab such as Johns-Hopkins. Here's a link about PCa path lab options for 2nd opinions: http://csn.cancer.org/node/212732. If possible, a consult with an oncologist specializing in PCa might be a good idea in order to obtain an independent assessment of your case.

Martin, I hope this gives you some add’l info to consider as you review and evaluate your tx options. If we can be of add’l help, please let us know. If you like, feel free to contact us via the CSN internal email feature.

Best,

mrs pjd

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Very good advice, mrspjd.

AussiePup's picture
AussiePup
Posts: 19
Joined: May 2011

Mrs PJD,

I'm overwhelmed with your post! Thank you very much ... I will checkout each link that you have referenced, as well as share some of your research with my doctors.

I'm touched that you would go the "extra mile" for me, which is just what you've done!

I will be forever grateful for your efforts and will definitely keep you posted.

Thanks again,

Martin

BRONX52
Posts: 156
Joined: Apr 2010

MRSPJD
Excellent advice and well detailed. Good job !!

FreddyJoe
Posts: 42
Joined: Dec 2010

I wonder about the injections in the buttocks, mine were in the abdomen, and as these shots last for 3-6 months they sometimes leave a tender lump that I would rather not have to sit on. I had the treatment your doctor talks about with the 3 markers inserted and guided like a GPS, it seemed to be very comfortable with no resulting problems. It was covered by Medicare. The 2 or 2 1/2 years of injections, I was not so happy with.

mrspjd
Posts: 693
Joined: Apr 2010

The injection site for LHRH drugs (luteinizing hormone releasing hormone) such as Lupron is typically the buttocks. The injection site for GnRH antagonists, such as the currently available Firmagon (degarelix), is commonly the stomach.

According to one source, a tender lump/knot may be more common with Firmagon (degarelix): “The one place where degarelix appears to have a 'downside' compared to leuprolide (Lupron) is that (because there is an initial 'loading dose' of 240 mg of the drug), it is associated with a high incidence of temporary injection site reactions at the time of the loading dose…” Many of the posts in the “dedicated” Firmagon thread seem to confirm this injection site side effect.

During the 9 months on ADT3 as part of his primary neo adjuvant tx for T3 PCa (which also included HDR-B and IMRT), PJD rec’d three separate 22.5 mg injections of Lupron, each lasting three months. The injection site was the buttock. We had read helpful info posted in an older thread on this forum that relaxing the buttock muscle upon injection eased post injection tenderness/sensitivity. PJD never developed any knot, swelling or lump after any of the Lupron injections. While there was some tenderness/discomfort at the injection site, he reports that it subsided after several hours and he had no discomfort sitting or standing or playing golf. ;)

SeattleJ
Posts: 32
Joined: Mar 2011

I also received my 2 Lupron shots (during a 6 month period) in the buttocks--one on each side (nice to be balanced). There was some tenderness each time for a day or so, but nothing serious. It certainly didn't keep me from doing anything.

John

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