Hormone Lite Loses Its Mo Jo: Quality of Life In the Crosshairs

Over the past few months my PSA has risen incrementally as shown below:

April   .11

May   .18

June  .24

July   .29

Aug.  .38

Sept. .38

Oct.   .39

In response to these numbers Dr. Myers and I discussed several options via the Patient Portal including radiation, surgery, full blown hormonal therapy (I. e., complete suppression of testosterone along with its concomitant adverse side effects) and modification of Hormone Lite by substituting xtandi for casodex. We agreed on the latter, but decided to postpone action to monitor my PSAs awhile longer.

I pondered this discussion over the next few days and returned to the Patient Portal  to raise a few related concerns. I advised Dr. Myers it would give me peace of mind if I knew whether he had guidelines in mind as to when action may be indicated. More specifically I posed the following questions: (1) Will we wait until my PSA reaches a certain level? (2) If so what might that number be? (3) Is the speed of ascension a determinate? As was his prerogative Dr. Myers chose not to respond. Rather than press him for answers via the internet, I elected to revisit these concerns at our upcoming annual appointment which occurred a few weeks later on October 26.

The planned informational exchange did not occur. Au contraire! I got blindsided and bushwhacked. The meeting began as usual. Initially a medical technician conducted a few routine tests, e. g., blood pressure, weight, temperature etc.  Dr. Myers' physician's assistant continued with a few routine preliminaries. Out of the blue she dropped the following bombshell: "It would appear the casodex has ceased to control the progression of your PCa. It is also conceivable that the casodex has begun to nourish the cancer. She continued  with the following barrage: "You might wish to consider Cyberknife  intervention. There is a physician in California who has demonstrated considerable success with this technique." Her frontal attacks were subsequently supported by Dr. Myers who added the option of  PBRT. While xtandi and full blown hormone therapy should remain in the mix, Dr. Myers wanted me to understand, both of these options harbored the risk of castration resistance resulting in a painfully slow, agonizing death. In any event before deciding on a course of action Dr. Myers and his PA agreed a follow up endorectal MRI was an essential prerequisite.  Dr. Myers urged me to have this procedure performed by VCU in Richmond Virginia since it was this clinic who provided the "benchmark" examination two years ago. 

So there you have it. The tumultuous journey is back on track with a vengeance. The endorectal MRI is scheduled for November 12th at VCU. Stay tuned.

Update on Radiation Treatment for Gynecomestia

The following e-mail exchange is self-explanatory:

Patient

It's been seven weeks since the completion of my radiation treatment. My breast size and pain have subsided substantially. I am pleased with my progress to date and I appreciate the effort of the radiation oncology team.

My questions are as follows:

--How much longer can we reasonably expect further improvement?

--I expect to remain on Hormone Therapy, which precipitated my gynecomestia, for evermore. After my improvement has reached its maximum  will my breast size and pain begin to reoccur?

--What can I expect in the long term, let's say, in the next three to five years.

 

Treatment Team Representative

  You can continue to have improvement for several more months.  The symptoms should not recur with continued hormone therapy – the radiation kills the cells in the area that are sensitive to the unblocked estrogen.  Normal cells should be oblivious to the estrogen.  Hopefully, no new issues.  With this low dose, problems with delayed fibrosis are rare – in fact, I’ve not seen any.

Stay tuned.

A Layman's Mini-Primer on Radiation for Gynecomestia

For  those of you with a special interest in radiation for the treatment of gynecomestia  I thought it may be of value to provide the information contained herein. Some of this material appears in earlier entries; some of it is new.

Let's begin with a common sense criterion for determining the need for treating gynecomestia, i. e.,"when  a guy's  breast size has developed to the point (no pun intended) that he is reluctant to swim in public or exercise bare-chested outdoors."  A compassionate college professor provided this guideline in response to a thread I initiated on an internet PCa site..

The following findings of a research paper captured my attention early on:

" In 2003 Widmark et al conducted the largest randomized trial on use of radiation therapy for prevention of gynecomastia (n=253) and found a reduction of gynecomastia rates from 71% to 28% when radiation therapy was given. For the treatment of existing gynecomastia, radiation therapy resulted in improvement or resolution of gynecomastia in 33% of treated patients, with 39% experiencing improvement or resolution of breast pain.^"

 

The following discussion with a Radiation Oncologist played a key role in my determination to proceed with radiation:

Pt.:What kind of outcome can I expect,

RO:--An eighty per cent reduction in the size of your breasts.

       --A temporary reddening of your breast tissue

        --No damage to the heart, lungs or breasts.

Pt: Please address the risk of breast cancer.

RO  The likelihood of causing such a cancer is ten thousand to one, and it would take thirty years to develop.

Pt:  Please explain the science underlying this approach.

RO: It accelerates the cell atrophy process.

Pt: What about underlying heart and lung tissue?

RO: We use only electrons which enables us to control the depth of penetration.

Pt; How long before we will see the results of treatment?

RO: The benefits of treatment should be apparent in four to six weeks. Reduction in pain and sensitivity usually precede the reduction of breast size.

I initiated and completed treatment the week of July 11th..Treatment consisted of three very brief (one or two minute?) exposures.

Thus far the improvements have been quicker and better than expected.
. Stay tuned.

.

Radiation for Gynecomestia: Dr. Myers Relents

My memo to Dr. Myers dated 6/8/16 appears below

As per our recent exchange of e-mails I met with a radiation oncologist (RO) and his physician assistant (PA). We began the appointment with a fairly detailed review of my PCa history and a thorough physical examination of my upper body. The RO concluded I am a suitable candidate for radiation treatment. which would involve three brief exposures over a one week period. "What kind of outcome can I expect", I asked.  A summary of their responses appears below:

--An eighty per cent reduction in the size of your breasts.

--A temporary reddening of your breast tissue

--No damage to the heart, lungs or breasts.

"Please address the risk of breast cancer" I requested. The PO responded: "The likelihood of causing such a cancer is ten thousand to one, and it would take thirty years to develop."

My concerns about the Cabergollne/Arimidex remedy appear below:

--It means  adding two medications to the many I now take daily.

--A few of the side effects listed for Cabergoline include dizziness, nausea and a spinning sensation. On a drug with similar side effects awhile back, i. e., Pentoxifylline, I experienced a stroke-like event during the middle of the night. The following three days I had significant dizziness, nausea and indigestion. A visit to my primary physician resulted in a brain scan. Fortunately the worst the brain scan revealed was that I no longer have the brain of a 30 year old. Less fortunately. for the past year or so, I suffer mild vertigo which comes and goes throughout the day.

 My doctor and I reviewed my medical history and medication list. He concluded the likely cause of these problems was Pentoxifylline. I discontinued its use. Suffice it to say I am reluctant to reinitiate its use or start any other drug(s) with similar side effects.

The PA mentioned the risk of osteoporosis associated with Arimidex.

Based on my research effort and my recent experience as outlined above, my preference would be to radiate.. By no means do I advocate radiation as a better option in general.  I have attempted to make a case that for me and my circumstances radiation is a reasonable approach. I hope and pray you agree. I want very much to  continue as your patient on Hormone Lite.

Respectfully,   Don O.

 

Today Dr. Myers pleasantly surprised me with the following affirmative response: "You have my ok to proceed with radiation".

 

 

 

Gynecomestia Turmoil; Dr. Myers Strongly Opposes My Inclination to Radiate

The following exchange of Patient Portal  e-mails between Dr. Myers and yours truly is self explanatory:.

Pt. 4/19/16  Dr. Myers' Capitalized Response Embedded

For the reasons stated in my latest  on-line journal entry, I have postponed implementation of the Cabergoline/Arimidex plan; see below:

"Before the ink fully dried on my charted course of action, I changed direction. A recent note to a cyberspace buddy contains the following update; "Based on a number of my advisors like yourself, I  have placed Dr. Myers' prescription for counteracting gynecomestia on hold. I intend to explore radiation more thoroughly. I will also give more thought to delaying any action until such time I can no longer  tolerate my body image and/or pain."

Hopefully you will continue to answer any questions on this topic if and when they occur."

 I VERY MUCH DISAGREE WITH THIS APPROACH

............................

Pt. 4/22/16  Dr. Myers' Capitalized Responses Embedded

I value your knowledge, expertise and judgment far too much to adopt a treatment plan you strongly oppose. For my own peace of mind, however, I would like to proceed with my research effort. I would do so, however, only with your concurrence. If you approve I will proceed as follows:

(1) Consult with a radiation oncologist to hear what s/he has to say about the effectiveness and likely side effects radiation would have on a person of my age and degree of involvement

 REASONABLE

 (2) Secure a better understanding of (A) the manner in which my gynecomestia is likely to progress and (B) whether non-treatment is an appropriate course of action for my circumstances.

THIS IS A VERY PERSONAL DECISION. REDUCTION MAMOPLASTY WOULD ELIMINATE THE PROBLEM, BUT IS SURGERY

If either of these choices appeal to me particularly, I would appreciate the opportunity to discuss my findings with you at our next regularly scheduled meeting (or sooner if indicated).

WE CAN DO IT BY PHONE IF YOU WISH

I conducted a fair amount of research before I sought you out as my PCa physician. This research effort paid off immensely. I will be forever grateful for all you have accomplished in my behalf. As I indicated toward the end of our scheduled appointment last October I doubt that I could have achieved a better outcome with any other practitioner....anywhere. In closing, please be assured I am prepared to follow your lead on this issue.

 HOWEVER, IT NEVER HURTS TO BRING OTHER EXPERTS AND CONSIDER ALL OPTIONS

.............................

PT 4/29/16 Dr. Myer's Capitalized Response Embedded
Your favorable  response to my proposed research effort is very encouraging. I will proceed as planned. At some point I may choose to discuss my findings by phone as you suggest. I will consider this as an opportunity to further my research effort.

Please be assured I would like very much to continue Hormone Lite under your care for as long as possible. I hope to avoid any action or statement that would jeopardize this arrangement..
I WOULD SAY THAT IF RADIATION IS THE OPTION YOU SELECT, I WOULD RATHER STOP THE CURRENT TREATMENT RATHER THAN PUT YOU AT RISK FOR RADIATION

JUST UNDERSTAND THAT I  THINK THE  RISK OF ADT LIGHT AND BREAST RADIATION IS TOO HIGH FOR BREAST CANCER.
 .....................

Pt 4/30/16  Dr,Myers' Capitalized Response Embedded 

 I very much appreciate your additional perspective on my research effort. It will be a topic for discussion when I meet with the radiation oncologist. Thank you!
HE WILL DENY ANY RISK. ASK  HIM  ABOUT THE BREAST CANCER RISK OF SCREENING MAMMOGRAPHY DONE REPEATEDLY. THEN ASK HOW THE ACCUMMULATIVE RADIATION DOSE OF MAMMOGRAPHY OVER TIME COMPARE WITH THE DOSE HE WILL BE USING ON YOUR BREASTS. 

.....................

Pt  5/1/16

Will do.

Gynecomestia Decision Tabled Until Further Notice

Before the ink fully dried on my charted course of action, I changed direction. A recent note to a cyberspace buddy contains the following update:

" Based on a number of my advisors like yourself, I  have placed Dr. Myers' prescription for counteracting gynecomestia on hold. I intend to explore radiation more thoroughly. I will also give more thought to delaying any action until such time I can no longer tolerate my body image and/or pain."

Stay tuned.

Gynecomestia Part II: For Better or Worse Decision Made: Nothing Ventured Nothing Gained

Rather than add to the increasingly complex array of supplements and medications I take on a daily basis, my layman's inclination was to undergo radiation therapy. In the absence of compelling evidence to do so, however, I have decided to accept Dr. Myers' recommendation.

The following recent e-mail exchange provides additional perspective:
Patient

Assuming they are not equal, which of the two treatment options:  (1) radiation or (2) the combined medications of Arimidex and Caberloline would be more effective in

:--.Reducing breast size and sensitivity

--Arresting further development

Dr. Myers

"2 is safer and nearly as effective"

Patient

My decision has been far more difficult than I imagined. Rather than agonize any further, I intend to abide by your knowledge, judgment and expertize. If you would initiate a prescription  for Cabergloline and Arimidex I will get started ASAP.

For the record...I am concerned about two precautions listed for Cabergloline,  namely use with alcohol and use with blood pressure medication. As you may recall I typically consume one or two beers  most evenings, and I take Losartan on a daily basis.

 Dr. Myers

"JUST TO BE VERY CAUTIOUS. START WITH ONE CABERGOLINE A WEEK. AFTER ONE MONTH GO TO MONDAY THURSDAY FOR ONE MONTH. THEN MONDAY WEDNESDAY FRIDAY."

As indicated in the title of this entry: "Decision Made..."  Stay tuned.

Gynecomestia: A Productive Dialog With Dr. "Snuffy" Myers on a Troubling Hormone Lite Side Effect

An unedited e-mail exchange between Dr. Myers and yours truly appears below:

Patient

Following our highly productive regularly scheduled meeting last October, a concern has evolved to the point that I would appreciate your professional guidance on an appropriate course of action. My breasts have enlarged to the point that their size and shape must now be apparent to others depending to some extent on my attire on any given day. For perspective think in terms of a one-eighth to one quarter cup of gelatinous material underlying each nipple overlaid by a relatively hardened area the size and shape of two fifty cent coins stacked one on top of the other. Breast sensitivity is also a problem. On a scale of one to ten with ten being the most painful think in terms of level  three point five when I turn over in bed.

My questions are as follows:

(1) What are my treatment options?

(2) Which of these options would you recommend?

(3) Is timing a consideration? Too early? Not soon enough?

(4) In my particular case is no treatment my best choice?

(5) If we choose to take no action at this juncture what can we expect in terms of further development? I have been on Hormone Lite for roughly two and a half years. Is my breast size and sensitivity likely to double in another two and a half years?

I suspect I have over-used the Patient Portal in the not-too-distant past. You may have noticed I have sharply curtailed my use of this valuable resource over the past several months. Please be assured I intend to continue to  limit my use  as we proceed

Thanks again for your conscientious professional care.

 

Dr. Myers

THERE ARE FOUR OPTIONS:
1. DO NOTHING AND LIVE WITH THE CHANGE IN YOUR BODY
2. START CABERGLOLINE AND ARIMIDEX THREE TIMES A WEEK. THESE DRUGS WOULD BLOCK PROLACTIN AND ESTROGEN, THE TWO HORMONES THAT STIMULATE BREAST GLAND DEVELOPMENT. ONCE THE SYMPTOMS SUBSIDE, WE WOULD TAKE THE NUMBER OF PILLS TO FIND THE LOWEST DOSE THAT WOULD CONTROL THE PROBLEM.
3. RADIATION TO THE BREAST. THIS DOES CAUSE RADIATION DAMAGE TO THE SKIN. THERE IS A THEORETICAL RISK OF BREAST CANCER, BUT I THINK THAT RISK IS VERY LOW AT YOUR  AGE.
4. REDUCTION MAMOPLASTY.

I RECOMMEND OPTION TWO.

 

Patient
I very much appreciate your prompt and thorough response. The ability to access you directly as these issues arise is an absolute blessing. I expect to get back to you very soon with a request for two prescriptions.