Looking at women after hormone treatment starts

RRMansWife said:

some answers
My husband is 69.
Yes, during our first 2nd opinion, they had requested the slides. I can only assume they examined them after getting them.
I thought he had an 8 Gleason, I'm not remembering where I got that. The last 2 Oncologists have said gleason of 7.
Heather

Primary versus Secondary information
I suggest that you obrtain copies of your medical records, tests, doctors notes, everything so the information that you post will be accurate and complete. ...the information that you use to make a decision will be accurate and complete.....aditionally it is a good idea to have your paperwork with you when you see a different physician.


In the US , physicians are required to provide you with copies of your medical records upon request.

Alive in Clive said:

side effects - hormone treatment
I was diagnosed last year with prostate cancer - PSA 9.7, Gleason score - 7. Underwent daily external radiation treatment for 3 1/2 months. Hormone treatment - shot every 3 months for two years. I have 1 year left.
Side effects of hormone treatment - low labido, hot flashes, shrinking of penis and testicles, loss of muscle mass, slight growth of breasts and some dizziness and depression.
I still have an eye for beautiful women, I didn't lose that.
To further my situation, after one month of radiation treatment, I went home one night and my wife proceeded to tell me she was divorcing me once I was finished with treatment. Well, she filed for divorce in March of this year.
To top it off, the radiation treatment damaged my bowel and in the last two months, I have had 2 surgeries whereby they used a laser to quarterize my lower bowel as I have had excessive blood in my stools.
On the up side, I have gained strength in my friends, support groups and joining LIVESTRONG. Their theme - ATTITUDE. This is what has saved me otherwise, I don't think I would be here writing this right now
Signed
Alive in Clive
Clive, IA

Welcome to our forum and so
Welcome to our forum and so sorry to read about your situation. I also agree with you that attitude can play an important part in our journey.

Would you mind sharing more on your pc history? I am also a Gleason 7 (3+4) and had Davinci surgery two years ago. Just curious what type of radiation treatments you had and why they immediately started you on Hormone treatment.

lewvino

Alive in Clive said:

side effects - hormone treatment
I was diagnosed last year with prostate cancer - PSA 9.7, Gleason score - 7. Underwent daily external radiation treatment for 3 1/2 months. Hormone treatment - shot every 3 months for two years. I have 1 year left.
Side effects of hormone treatment - low labido, hot flashes, shrinking of penis and testicles, loss of muscle mass, slight growth of breasts and some dizziness and depression.
I still have an eye for beautiful women, I didn't lose that.
To further my situation, after one month of radiation treatment, I went home one night and my wife proceeded to tell me she was divorcing me once I was finished with treatment. Well, she filed for divorce in March of this year.
To top it off, the radiation treatment damaged my bowel and in the last two months, I have had 2 surgeries whereby they used a laser to quarterize my lower bowel as I have had excessive blood in my stools.
On the up side, I have gained strength in my friends, support groups and joining LIVESTRONG. Their theme - ATTITUDE. This is what has saved me otherwise, I don't think I would be here writing this right now
Signed
Alive in Clive
Clive, IA

New Thread?
Sorry for your difficulties and hardships but I'm happy that you are finding support from your friends and others. Thanks for sharing your story.

If you want more people to see it and reply, I'd suggest making a copy of your message and posting it as a new thread so that people can see it in the directory.

Good luck!

robert1 said:

Options
Given the PSA level, Gleason score and number of positive cores, there is a reasonable chance the PCa may be outside the prostate capsule. Although this may not be the case, making this assumption will lead to a better treatment choice. During my decision journey, I often heard that the real measure of a treatment option is its long-term cure rate for intermediate risk patients.

Both Proton and CK have great promise, but the 5 year cure rates for both are below IGRT and Brachythearpy. There are no 10 year cure rate stats for CK, as it is too new for a 10 year history. CK has had one study so far, and it was for 5 year cure rates. It produced some impressive numbers and statistically beats surgery but did not equal the cure rates for IGRT and Brachytherapy.

Nothing is certain with this disease, but your odds may be best with a combination of IGRT and seeds. This option treats the area around the prostate to attack any escape within 6mm-8mm and puts cell killing power right at the source of the problem. It may be your most aggressive and proven option.

Good luck and God Bless You both.

robert1

Commercial
Robert,

Were you treated in Atlanta by chance? Your post sounds a bit like a commercial for PostRcison out of Atlanta which regularly uses seeds and some form of IMRT/IGRT to treat prostate cancer. Indeed they do have a good track record and their website boasts that it has a "cure" rate at 10 years of 83% overall and 88% for early stage prostate cancer. Unfortunately, their analysis of competing treatments is at odds with ads from the other side. Statistics can be slanted, as we all know, and PostRcison has an aggressive marketing campaign.

Not sure where you get the idea that CK has only had a single study. The recent study I referenced in an earlier post on this thread cited 52 sources which included a couple of dozen studies. Pub Med lists 38 studies when using search terms for "prostate" and "cyberknife."

It's true that CK has only be used to treat prostate cancer since about 2005. It was approved by the FDA in 2000 but tracking technology to achieve the accuracy needed to get sub-millimeter accuracy until later and it is still evolving. By the way, the 5-year rates exceed 90% and early results from another forthcoming study (not yet published but results shared by my radiologist) are at 94%. A cure rate is a mush term in my opinion...I think the absence of biochemical recurrence (a risking PSA after treatment) is more accurate. BTW CK is also used to treat brain tumors (since 2000), pancreas, liver, kidney, spine, lung, and so forth.

Another aspect which you did not address were side effects. Overall, CK has much lower side effects than Brachy (with or without palladium isotopes) as an unfortunate receipient of that treatment has recently documented in another thread where he describes his catherization for a year after treatment.

I'm not bashing a combination of seeds + IGRT/IMRT. It does have a good track record and like all treatments it has advanatages and disadvantages.

One thing that always piques my interest is when people start talking 10-year survival rates. Frankly, almost everyone who is diagnosed with PCA today will likely be here in 10 years. The most common cause of death for men with prostate cancer is heart disease. Even in men with recurrence after treatment, life expectancies that exceed 10 years of BCR are more common than otherwise. The other thing to keep in mind, in my opinion, is that if you base a treatment choice on a 10-year study, you're basically buying 10-year old (or longer) technology. Given the pace of medical technology advances today, I can't understand why anyone would settle for 10-year old technology just because there is a study. Given the very large amount of data on PCa from all over the world, modeling and simulation, statistical correlation, and a host of other techniques can very accurately predeict long term outcomes on shorter studies. I realize this is a personal choice and that some men are simply more comfortable with "tried and true" and other such bumper stickers. That wasn't the way I felt at all and if men are willing to do the research and investigation I think they can accurately assess whether the "latest and greatest" is with going for.

PostRcision, BTW was developed in the late 70s...so in this case choosing that dual treatment method is selecting 30-year old technology.

I'm glad your treatment worked for you.

K

robert1 said:

Trying to Help
Kongo:

No, I am not being treated in Atlanta and my choice was not ProstRcision. It is not clear to me what upset you. My posts are no more a commercial than the CK posts here.

There appears to be only one definative 5 year CK study I can find. I would like to learn more, so if you can direct me to other studies that have undergone third party scrutiny it will be appreciated. The study that is always cited involved very few patients, reported excellent results but did not cover sexual side effects. Regardless, many of us need more than a 5 year track record, and many may not. Predicting long-term results with short-term studies was not good enough for me. That's just me!

A well known Radiation Oncolgist will publish a 99.1% ten year cure rate (biochemical free)this year for the combination of external radiation and seeds with very low morbidity rates. I believe these are the best results ever published that have undergone third party scrutiny.

I will not bash CK as I believe it to be excellent. At the same time belittling IGRT + seeds does not look to be a good plan as it is documented as the most effective and proven treatment possible. This is not 10 year old technology. EBRT has evolved into IGRT, and CK for that matter, and 5 year Brachytherapy results alone exceed results for CK. The seeds are much smaller and implantaion has improved greatly.

I am not trying to sell anything on this site. My goal is to share what I have learned and make sure that knowledge is backed by long-term facts and results.

You made a solid choice, and i wish you the absolute best.

robert1

Appreciate Your Help
Robert,

Not upset at all, and I certainly didn't mean to belittle IGRT+seeds as it is obviously an effective treatment and I look forward to reading any new studies that can post such impressive long term statistics with low morbidity.

If you copy and paste the web address below it gives a good comprehensive overview of CK, several recent studies (not just small numbers like the initial King study) and it also addresses sexual side effects. Briefly, the Katz study (author of the paper) with more than 300 patients reports a 100% BCR free rate at 5 years with 86% full sexual function.

http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf

My only beef is when some (perhaps unintentionally) throw out facts like "only one CK study, etc.) which are just not true. A single study implies, by its very nature, that the methodology is still experimental which is simply not the case here. Didn't appear to be touchy.

K

Kongo said:

Appreciate Your Help
Robert,

Not upset at all, and I certainly didn't mean to belittle IGRT+seeds as it is obviously an effective treatment and I look forward to reading any new studies that can post such impressive long term statistics with low morbidity.

If you copy and paste the web address below it gives a good comprehensive overview of CK, several recent studies (not just small numbers like the initial King study) and it also addresses sexual side effects. Briefly, the Katz study (author of the paper) with more than 300 patients reports a 100% BCR free rate at 5 years with 86% full sexual function.

http://www.tcrt.org///mc_images/category/4309/04-katz_tcrt_9_5.pdf

My only beef is when some (perhaps unintentionally) throw out facts like "only one CK study, etc.) which are just not true. A single study implies, by its very nature, that the methodology is still experimental which is simply not the case here. Didn't appear to be touchy.

K

From an RT Fan
Kongo:

I don't know where my treatment decision will lead. Hopefully we both made the right one.

I stand corrected. Thank you for sending me the CK link. My intent was to identify that long-term (7-15 year) CK studies do not yet exist, so there are things we cannot yet know. While this may not be important to everyone, it will be critical for many of us, if not most guys.

The studies listed in the review article you sent me have very short follow-up relatively and relatively small numbers of patinets compared to other treatment options with longer track records. The recent 5 year paper by Chris King is widely considered to be the cleanest and best CK study. It is not mentioned in the article as it is too new. That paper shows 5 year BRFS of 92% for CK. Just as a comparison...Zelfesky published 95% at 5 years with 81 Gy IMRT. By the way, Sylvester will publish a 99.1% BRFS 7 year result this year in Cancer. I previously thought it was 10 years. Please pardon my error.

As a comparison to the cathater issue you mentioned, R. Meier reported a couple of cases of bladdeer neck necrosis (grade 4 late toxicity) with Cyber Knife on a protocal specifcially written to look at toxicity and BRFS. No treatment option is without its scarey stories.

As I mentioned CK is great, has produced excellent 5 year results, and could very well be the future of RT, but people should know that the data is relatively preliminary (compared to several other Radio Therapy treatment options). If the estimate on alpha/beta ratio is off even a little with the limited CK info., the results could suffer significantly (late local recurrence, toxicity, etc).

As a 55 year old man, I was very focused on 10 & 15 year results to the extent they exisited. They do exist for external radiation and seeds, and they are superior, so that explains the what and why of the choice. Like all of us, I calculated the odds and made a decision that seemed best for me.

Again, I wish you the very best and hope that our exchange and contributions helped the couple in our thread and others.

robert1

2ndBase said:

Hormone Treatment
Take it from someone who has been there 8 years ago and is now in hospice care,the hormones will not make you go blind but it will seriously affect the preception and totally take away the desire if continued and most times if only given one shot. You learn to live with it.

Thoughts & Questions
Hello RRMansWife:

You may be further into your search by now. Hopefully your options are becoming more clear.

Given your husband's staging and situation, if you choose a RadioTherapy option please make absolutely certain that they will be treating his lymph nodes (multiple locations) and seminal vesicles. This is very very important, and not all of the RadioTherapy options are well suited for this task or have a solid history for treating these extra targets.

The good news is that there are RadioTherapy options that are well suited to treating the prostate, lymph system and seminal vesicles.

God Bless you,

robert1

robert1 said:

Thoughts & Questions
Hello RRMansWife:

You may be further into your search by now. Hopefully your options are becoming more clear.

Given your husband's staging and situation, if you choose a RadioTherapy option please make absolutely certain that they will be treating his lymph nodes (multiple locations) and seminal vesicles. This is very very important, and not all of the RadioTherapy options are well suited for this task or have a solid history for treating these extra targets.

The good news is that there are RadioTherapy options that are well suited to treating the prostate, lymph system and seminal vesicles.

God Bless you,

robert1

Facts, opinions & semantics: sorting it out=challenging at best
The medical/scientific community has historically relied on a compilation of long term research study data tracking large cohorts/groups over an extended period of time in order to prove (or disprove) study hypotheses in clinical trials and understand potential short term & latent tx side effects, including BCR rates for PCa. The more research data collected AND the longer the studies, the more reliable (or unreliable) the findings and study conclusions and, therefore, more accurate statistical predictions. While statistical formulas and scientific equations may utilize short term, recent, clinical trial data (for example, 3-5 yrs) to calculate long term predictions, they are just that: statistical predictions--not validated solid evidence. (Note: If you’re the one who falls on the “wrong side” of the statistical predictions, some say that you may as well throw all the statistics, predictions and study results out the window.)

In Katz’ paper titled “CyberKnife Radiosurgery for Prostate Cancer,” he acknowledges and emphasizes the need for long term follow up to “…confirm the SBRT/CK data and optimal dosing for CK-delivered prostate SBRT.” “We eagerly await long-term follow-up to further validate the efficacy and minimal toxicity of CyberKnife SBRT for prostate cancer.”

Similarly, in the King & Freeman study titled “Stereotactic body radiotherapy for low-risk prostate cancer: five-year outcomes,” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3022740/?tool=pubmed) the authors conclude that ongoing clinical trials are underway to “further explore this [SBRT/CK] treatment approach.”

After many long hours of research, multiple consults with PCa specialists, and face to face talks with survivors, we included the findings of long term (10+ yrs) PCa clinical trial data in our evaluation of various txs appropriate for PJD's stage of cancer. He insisted on seeing solid evidence from long term studies that included participants dx’d with PCa staging similar to his (T3). Long term research data validated that the RT txs he was considering had been refined and had evolved to have a safe and effective protocol, including, but not limited to, radiation dosing. In addition, multiple long term study findings with large cohort groups replicated and confirmed the data, ensuring that those txs might have the best chance of successful outcome with the fewest side effects (short & long term), low BCR rates, and high OS rates.

IMO, downplaying long term, 10+ yr, successful clinical data related to certain tx modalities is oversimplification at best, and is not indicative of, nor does it equate to: “buying 10-year old (or longer) technology,” or settling “for 10-year old technology just because there is a study.” Furthermore, reducing the issue to “…some men are simply more comfortable with ‘tried and true’ and other such bumper stickers” is, IMO, unfair to men who have made tx choices based, in part, upon multiple long term study findings consisting of proven and replicated solid evidence.

Comparing tx study data for different PCa tx modalities, including success/failure rates, toxicity, short and long term side effects, etc., can be challenging (and confusing) without first considering one critical factor: the study participants. Their PCa profiles/characteristics (PCa staging) and the number of participants with “like” or specific profiles in common are important factors to understand when reviewing study findings. That info can tell you a lot about the study outcomes.

The King & Freeman 5 yr study consisted of a total of 41 participants who were identified as “newly diagnosed, with biopsy-proven prostate cancer presenting with low-risk features.” The participants’ low-risk status featured organ-confined disease. The specific prerequisite criteria for King’s low-risk classification group of participants included a “pre-treatment PSA of 10 ng/mL or less, Gleason score of 3+3 or lower and clinical stage T1c or T2a/b.” Patients with a “Gleason score of 3+4 were included if present in 2 or fewer cores and involving less than 5 mm aggregate tumor length.” (BTW, based on the info provided thus far by Heather, it would seem that her husband, Ed, would not qualify or fit within the low risk profile defined in King’s SBRT mono tx study.) In general, patients with low risk staging, early dx & tx have the highest odds for “cure” aka low rates of BCR, fewer side effects and quicker recovery time.

In fact, for men identified with low risk, organ confined PCa who are newly dx’d and tx’d early, most PCa tx modalities, including all forms of RP and RT, even AS (active surveillance), have excellent odds for successful tx outcomes, low BCR rates, including reduced scope and intensity of potential side effects and quicker recovery times. Age, PSA history, and/or pre-existing health issues also are important factors to consider. While overall tx time length may be shorter & therefore “more convenient” (when did cancer become “convenient?”) for certain txs such as SBRT/CK, IMO, the “convenience” factor seems less important than choosing and evaluating a tx based upon a known and proven long term successful track record.

I, too, am a “fan” of RT, including both standard IMRT and hypofractionated RT aka SBRT or CK. (After all, RT was part of my husband’s primary txs.) I believe SBRT currently shows promise as a viable tx option for LOW RISK, PROSTATE CONFINED DISEASE, as recent findings seem to indicate. Many may view SBRT/CK as non-experimental, especially for men with staging definitions that fall within the low risk characteristics defined by King for the 41 participants that comprised the King/Freeman 5 yr study.

IMO, SBRT also may hold promise in the future as a tx for INTERMEDIATE/HIGH RISK PCa, especially when used as adjuvant therapy with other tx protocols. It’s just too early to know or predict. Currently, most SBRT studies appear to advocate for SBRT/CK as a mono therapy which may not prove adequate in the tx of higher risk PCa. While a few very limited studies have finished and others are underway with higher risk PCa participants, and preliminary results “look good,” IMO, the bottom line is that long term SBRT trial data is needed using a large cohort of intermediate-high risk PCa patients in order to study effective, optimum & safe dosing protocols (which are currently unclear), adjuvant txs, short & long term side effects, and long term rates of BCR/F & OS.

Perhaps it’s just a matter of semantics; however, the comment in a previous post that “A single study implies, by its very nature, that the methodology is still experimental which is simply not the case here” is, IMO, confusing and misleading at best, especially with regard to men dx’d with higher risk disease. Treating intermediate-high risk PCa with SBRT/CK (as mono or adjuvant therapy) is still considered experimental. That doesn’t mean it might not be an effective tx for certain higher risk patients…it means one needs to be an informed medical consumer/patient who fully understands the potential risks as well as the possible benefits.

BTW, it’s interesting to note the following: Under the “Conflicts of Interest” section of Dr. Katz’ paper, disclosure is appropriately made that Katz received speaker’s honoraria from Accuray, Inc. (Accuray is the manufacturer of CyberKnife); Dr. Freeman (King & Freeman 5 yr study) is listed on the Accuray website as senior manager of clinical development at Accuray and an oncologist affiliated with a radiation oncology practice; and, as of this writing, Dr. King is utilizing a another manufacturer’s brand of RT equipment (not Accuray’s CK) to deliver SBRT.

The facts are out there and anyone can form their own opinions after reviewing the literature.

mrs pjd