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Hoping to avoid hormone therapy if I can help it...

cubsfan1963
Posts: 11
Joined: Jun 2017

Hello all,

I'm new to this forum.  I was diagnosed with PC on May 8, 2017.  I'm 53 years old, in otherwise excellent health.  I had not a physical for a few years and never had a PSA test, so my primary care physician strongly advised that I take it - so I did.  My first PSA result came back as 5.89, then took it again (after a round of antibiotics - to rule out possible spike from urine infection) and this time it was even higher - 7.09.  As a next step, I was referred to a urologist for a prostate biopsy, and got the sobering news that cancer was found in 7 of 12 cores, and that I had a Gleason score of 7 (4+3), with a clinical T stage of T2a.  The pathology report labed my results as "intermediate risk", but the 4+3 score means that risk is more aggressive.  So far I have no signs of extracapsular extension.

I am leaning toward proton therapy, and as part of my consultation with the radiation oncologist at the Chicago Proton Center he suggested that before firming up our plan of attack we should either 1) get a second opinion on my biopsy tissue - and do that at John Hopkins medical center, OR 2) see if my insurance would cover the cost of a Prolaris test - which offers a more definitive look at the biopsy tissue... the findings of which - in combination with a 3T MRI - would enable us to develop the most appropriate treatment plan.

Given the results of my initial pathology report, I was not shocked when my Prolaris test score came back as high... it was 4.3, and labeled "more aggressive".  As a result, my doc is recommending that I do short term hormone therapy (approx 4 months), and start proton treatment after I'm about a month and a half into the hormone therapy.

After everything I've read about hormone therapy, my hope is to avoid it if I possibly can. I prefer to dive right into the proton therapy and take my chances -- as to me, the quality of my life is just as important as the quantity of my life.  I will be talking to my doc tomorrow to see if that's an option.

I'm wondering if anyone out there was in a similar situation - having a Gleason score of 4+3... leaning toward radiation (proton or perhaps Cyberknife)... and no evidence of metastasis beyond the prostate capsule.  I still need to get an MRI done to confirm that finding, but right now I'd welcome input from anyone who faced this decision... what they decided... and how things worked out for them.  Sorry about this LONG initial post!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3275
Joined: May 2012

Welcome cubs,

It is actually more efficient to give a fuller explanation in the Intro, such as you did. It saves 10 questions from the guys later.

Proton therapy is a relatively rare choice.  In part because fewer centers provide it, it is expensive, and sometimes insurance won't pay. But reports usually claim that it is as successful as other modalities.  Cyberknife, which you also mentioned, it much more common, and ordinarily highly effective, with few side-effects.

The most common question here is "What should I do?", asked by the recently diagnosed. You will get a lot of responses.   But all always agree that every patient should speak to a variety of doctors (Radiation Oncologists, Surgeons, medical Oncologists) before they decide anything.

You are significantly younger than average at diagnosis, and while your particulars suggest that presently your cancer is almost definitely curable, it is of at least intermediate aggression, and your volume of involvement is high.  Getting the MRI is a good idea, but PCa metastasis can consist of only a few cells, too faint to be detected by any currently available form of imaging.  This is a shortcoming in current PCa treatment.  The MRI results will add to the equation, but not solve it.

"Quality of life" is somewhat subjective, but most would also agree that eradicating the disease is reasonably Priority 1.  Without life itself, quality of life ceases to mean much.  I hope you are cured soon; you very likely will be.

max

cubsfan1963
Posts: 11
Joined: Jun 2017

Max,

Thanks much for your perspective and reminder that eradicating the disease is priority 1, as surely that is how i see it too.  I am anxious to get my treatment started - especially after spending the past month doing a ton of online research, reading books and taking in as many other perspectives as I can.  

I will provide updates on the treatment path I ultimatley decide on and how things play out.  

Regards, Cubsfan 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3275
Joined: May 2012

Cubs,

You are obviously very up to speed on PCa.  It makes grappling with the disease much less stressful. Many people are diagnosed with a cancer and then ask "How long till I'm dead?" But PCa is not that way.  The averge guy newly-diagnosed even with metastatic (Stage 4) disease lives 5 years in the US today, but of course most cases are caught long before Stage 4.  I have personally known and worked-face-to-face with two friends who died of PCa, but both lived over 13 years with it, and virtually all of those years were high-quality, with little visible imparement.  Several new drugs have been added since they passed, and it is getting better monthly it seems.

Yes, keep researching the options. I had surgery, which was a good and reasonable choice for my particulars.  But I do not recommend to patients -- read and meet doctors until you hit upon the modaliity that you know in your gut is the correct choice for you.  I had firmly decided upon IGRT, so much so that I was not going to meet a surgeon at all. But I figured I should at least hear what a surgeon had to say. The surgeon so blew my wife and I away that I was converted instantly, and did not look back.  Some move in the opposite direction.   As Fleetwood Mac sang, go your own way.

max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Sorry you have had to join our club but you seem to have a very good grasp of the issues.

I concur with what Max has to say above but he doesn't address your concern w/HDT.  Here's a quote from a webpage published by the National Cancer Institute:

"Hormone therapy given before other treatments is called neoadjuvant hormone therapy. Men with early-stage prostate cancer that has an intermediate or high risk of recurrence often receive hormone therapy before or during radiation therapy, in addition to receiving hormone therapy after radiation therapy. Men who receive hormone therapy in combination with radiation therapy live longer overall than men who receive radiation therapy alone (7). The use of neoadjuvant hormone therapy (alone or in combination with chemotherapy) before prostatectomy has not been shown to prolong survival and is not a standard treatment."  See: https://www.cancer.gov/types/prostate/prostate-hormone-therapy-fact-sheet

So, the apparent theory is that you will have a greater probability of survival if you are given HDT before your proton beam therapy (PBT) treatment.   Personally, I'm with you.  I would avoid HDT treatment if at all possible because the negative effects of such treatment are so great.

I'd suggest that you do as much additional research on the HDT medication that your doc wants to prescribe and on the effectiveness of using HDT in combo w/PBT for the treatment of prostate cancer and have an serious "heart to heart" discussion w/your doc about what you find out and what your feelings about it are.

However, ultimately, it's YOUR choice.  You have to decide whether you think it's necessary to suffer through the neg effects of HDT for whatever benefit might accrue in terms of your treatment.  If unsure, you could "try" the HDT med for awhile and it you find it unsatisfactory, just stop taking it.

Whatever you decide, good luck!

BTW, I was successfully treated w/Cyberkinfe 6 years ago but HDT was not suggested as a part of my treatment.

 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

As SSW researched and presented, hormone therapy with intermediate or high risk live longer with better results. 

Sp that there is no confulsion SSW was diagnosed with a low risk disease, not intermediate , so hormone therapy was not appropriate.

Below is a nine year follow up study of SBRT of which cyberknife is one of the machines that deliver this radiation, listing percent who received hormone theapy and results of treatment. I strongly recommend that you research and consider this choice of treatment.

 http://meetinglibrary.asco.org/record/119573/abstract

cubsfan1963
Posts: 11
Joined: Jun 2017

SSW & Hopeful --

Thanks to you both for sharing your guidance and points of view.  I continue to be very wary of the short and potentially long-term side effects of ADT - even if i'm only on it for 4 months.  Hopeful, that study you point out on the effectiveness of cyberknife is very encouraging, and it appears the members of the study group who also took ADT did not show significantly different results from those who did not receive ADT as part of their treatment.

THis will be a big week for me in terms of settling on my treatment choice (protons or cyberknife), and whether I can proceed without doing a course of ADT first.  CAn tell you that if I do go with Proton beam therapy that it looks like I will have to pay out of my own pocket, but they will give me the medicare rate, which will save me thousands of dollars (it's still a steep cost with that break... but it looks like i can swing it if i have to).  On the other hand, if I go with Cyberknife my insurance will likely cover it... which is also a significant considerration.  I have read that both treatments are highly targeted and do about an equal job in eradicating the cancer, but protons seem to have a somewhat better track record of minimizing side effects.

I will keep you posted on my progress... thanks again!

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Cubsfan,

Welcome to the board. You seem to be aware of our common problem and I hope you share your knowledge with us.

Regarding the combi treatment of hormonal plus radiation, as commented by Swing and Hopeful, the modality seem to have improved outcomes (35% better) in terms of lasting period before biochemical failure. The radiation portion is the one that provides cure. The hormonal simply sensitizes cells AR (androgen receptors) which makes these more affinity to receive the RT blow. In any case, the radiation alone can also do the job 100% effectively and the outcome success can be verified (via the unmasked PSA) earlier if done without ADT involvement.

Surely doctors do not look only for successes but to the overall aspects of the diagnosis. Apart from the voluminous case (7 out of 12 positive), Gleason grade 4 cells are risky and many times linked to causes of spread (extraprostatic extensions) which makes the combination therapy preferencial to your case (radiation is not repeated). The side effects from ADT can be nasty but mild to some. We all recover once the drugs' effectiveness period ends.  
The missing image study will provide a clue on the extent of the disease so that you and your doctor may decide then what may be the best option, including the type of radiation. Proton is the one that provide lesser collateral damage for its "Bragg's peak" particularity, however, when spread spots exist, IMRT or SBRT (CK) may be more appropriate. A combination of the RT modalities is also a possibility. As reference to the image exam, I would recommend you to involve a PET scan for pinpointing lesions. My doctor just informed me that the newer standards regarding image exams using the PSA as trigger threshold, is CT= PSA>20/ MRI= PSA>10/ Bone scan= PSA>30/ PET= PSA>1.20. Surely it all depends on the type of contrast agent or radiotracers.

Best wishes,

VGama

cubsfan1963
Posts: 11
Joined: Jun 2017

VGama, 

Thanks much for your input.  I hadn't heard the benefit of hormonal therapy explained like that (in terms of how it sensitizes cells AR, making them more receptive to being taken out by RT), so that was very helpful.  

Sounds like you've been thru ADT as part of your treatment, and that in your case you fully or mostly recovered from it once you ceased taking it.  

There are so many side effects linked with ADT (loss of libido, erectile dysfunction, shrinkage of testicles and penis, hot flashes, breast tenderness/growth of breast tissue, osteoprosis, anemia, loss of muscle mass, weight gain, fatigue, depression, etc.)... and most of them scare the heck out of me.  But if in your expereince most of these tend to go away or lessen over time, that would be helpful to know.  Also, if I'm only on something like Lupron for for 4 months, might the odds of long-term issues be lessened (vs being on a 6-month or 1-year plan)?

I'd welcome any thoughts you or others may have on that based on your own experience.  Thank you!! 

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Cubsfan,

I was on ADT during 18 months. This is a long period in which I experienced many side effects, however, apart from fatigue and loss of libido, they occurred occasionally, were mild, never bordered me or were unnoticed. I still had sort of handicapped sex in spite of my spongy balls. ADT drove my testosterone down gradually to castration levels of less than 1 (normal levels are between 250 and 800 ng/dL). The recovery period took about 3 months, starting as soon as the drug's effectiveness period ended (plus the half-life of 7 days). I could feel the difference because the symptoms progressively stop existing. It all accompany the increase of the testosterone.

Surely not everybody has the same experience and, in your case the period of 4 months (probably only one shot) is minimal. You can read about my experience (used drug and its results) in these links;

https://csn.cancer.org/node/244938

https://csn.cancer.org/node/236528

I will start again ADT as my main therapy as soon as the PSA reaches a level between 2.0 /2.5 ng/ml. I am just in a long vacation off drugs free of the traditional side effects. This period has lasted 5 years. Before starting ADT I will have a 18F choline PSMA PET exam to verify any possibility for an oligometastatic treatment.

Please note that treatments for PCa depend much on the location of the bandit. No one can expect to hit the bulls eyes in the dark. One must have targets to shoot the beams. The image study is very important in any of your decisions. I would spend money for having the best  diagnosis before deciding on a therapy. Look for sophisticated image exams, get second opinions discuss with your family and decide.

Best,

VG

Old Salt
Posts: 720
Joined: Aug 2014

The proposed hormone therapy will be for four months. This is relatively short and you (Cubsfan) already made the point that recovery, especially at your age, should be uneventful. Vasco (previous message) and I agree with that scenario. 

The list of side effects of testosterone deprivation is long, but the effects vary A LOT from person to person. Age plays a role as well. We tend to hear from those who were most troubled by them. And many of the side effects can be minimized by taking an active stance (exercise etc.) against them.

I (a 70+ guy) had hormone therapy for 18 months and recovery took about a year. 

Finally, hormone therapy is also used to shrink the prostate prior to radiation. This is more relevant for those with enlarged prostates. What about yours?

cubsfan1963
Posts: 11
Joined: Jun 2017

Thanks for your insights, Old Salt.  It's so helpful to me to hear from those of you who have been fighting the battle for a while and sharing your collective knowledge and experience with each other.  I'm very grateful to have found this forum...

As for the size of my prostate, at the time of my biopsy (May 1, 2017), its volume was 27.7.  I've heard for a man my age (53) a volume of 25 is average, so was told it's about normal.  Does that sound right to you?

 

Josephg
Posts: 155
Joined: Jan 2013

I had the combo treatment of HDT (Lupron) and IMRT, at the recommendation of my Ongologist.  He advised me that the combo treatment was showing better results.  For me, it was an opportunity to possibly beat the bandit, so I decided to go all out with the treatment.  That was about 3 years ago, and I have no regrets, regardless of the eventual outcome.

But, as the folks here have stated, each person needs to make their own decision, based upon their research, and what they believe to be the best option for their own situation.

My experiences with the combo therapy are detailed here.

http://csn.cancer.org/comment/1414101#comment-1414101

I wish you the best of outcomes in whatever treatment plan that you choose.

cubsfan1963
Posts: 11
Joined: Jun 2017

Very helpful to hear about your experience, Josephg.  Thanks much for your perspective, and for sharing that link to details about your combo therapy!

 

GeorgeG
Posts: 127
Joined: May 2017

It's an indivual thing and only you can decide what your priorities are. My wife and I have been through 4 cancers together and in some cases we opted for follow on chemical treatments and in other cases we did not. I am at biochemical failure after RP and getting ready for salvage radiation. I opted for short term ADT with radition. I went to a few doctors for recommendations and was told none, 6 months or 2 years of ADT (the protocol in the salvage setting has more disagreement thatn the primary treatment setting). As stated above, the studies are pretty clear that ADT during primary radiation has a meaningful improvement in the outcome. especially in intermediate and high risk patients. One study that I saw concluded that around 15% of patients will have permanent symptoms of low testosterone after short term ADT and 85% will feel normal after some period of recovery. Hormone therapy is no joke for sure, its powerful stuff. My testosterone went from 636 to 33 in 3 days (Firmagon) and It's not great but it is manageable. Any major intervention into the human body carries risks as does surgery, radiation, etc. You'll have to decide if you want to add a statistical benefit to your most likely outcome or forego that because you want the least amount of physical complications. Only you can answer that. I can tell you that if you were to progress (I hope you don't) into a more dangerous status, your outlook on what is acceptable to tolerate might change. Mine did.

My advice to you is play the movie forwrd for all cases and see which combination turns out to be best for you:

No ADT, was cured.

No ADT, was not cured.

ADT , was cured

ADT, was not cured.

Basically you need to figure out if you would be remorsefull if you end up in trouble and did not elect for ADT. I am not you so I can't tell you what's best. We had a friend turn down treatment for another type of cancer and took his wife on a cruise and then threw a party while he still felt good. Then he died peacefully some months later. That's extremely brave and something that not everyone could do. Most that I have met are the opposite and want to fight with all of the tools. We alsways weight the risks and benifits and then decide if the improvement is worth the downside. I can only confirm that the studies indicate ADT when added to primary radiation improves the outcome statistically for more advanced cases. I was surprised to discover that I would put a lot of weight on what my wife wanted to do in my case because she is going throught his with me and the look in her eyes when I was thinking about "toughing it out" was devastating to me. Now she is more hopeful and because of that so am I. You will discover a lot about yourself, some of it will be good.

Best of luck, in some ways this is the hardest part. 

cubsfan1963
Posts: 11
Joined: Jun 2017

I appreciate your thoughtful insights, George.  As I continue to gather valuable input from folks like you and others on this forum who have been thru it, as well as reading various clinical studies and other reserach, I'm beginning to lean toward opting for the ADT in conjunction with radiation - especially if i can keep the ADT to a short duration of 4 months.  I'm certainly seeing and hearing a lot about how it helps boost the effectivness of the radiation treatments in the short run, and helps lower the likelihood of the recurrance of PC in the long run (providing the initial radiation treatmetns are effective in ablating the cancer in the first place).

I'm still pretty young (53), so hopefully my body will bounce back well from the ADT.  All of this feels sort of like a calulated roll of the dice, but like a "good" gambler, I think I should do what I can to get the best odds working in my favor.

I will update my post later next week following the outcome of a 3T MRI and additional PSA test I'm having done early next week (my first since my biopsy on May 1).  My doc and I should be armed with everything we need at that point to make a final determination on my treatment path.  Thanks again...

 

 

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

I like the way you are advancing with your researches. Surely you should do what you can to get the best odds working in your favor.

The 3tMRI will provide a good picture of localized lesions but one picture alone can distort the results. A multiparametric analysis may give you a better understanding in the study. It all resumes in verifying if extraprostatic extensions exist (at localized lymph nodes, prostate bed and surrounding tissues). The typical Image study cannot distinguish cancer when tumours are small in size (CT:<1.2 cm/ MRI: <0.8 cm). A multiparametric approach done by a PCa radiologist have lesser probabilities of errors.

The importance of such guessing lays in the choice of the RT modality. Proton, CK, IMRT, etc, are all proper for a contained case. Extra prostatic extensions are better dealt with photons (IMRT and/or CK). The particulars distinguishing the modalities are the Bragg's peak of Proton; Hyperfractionation of CK; and versatility (Intensity modulated) in IMRT. All got the potential of IGRT, however, some Proton facilities require a static approach (a cast is done in advance) but organs are known to move (never at the same millimetric location). 3D attacks with IMRT makes the time under radiation sorter, which is good in some isodose areas. High intensity delivered in one section has demonstrated to be more effective than if delivered in smaller fractions. This is in particular good in those cases where the cancer is contained (the whole gland seen as one tumor). Another aspect regards the existence of prohibitive ulcerative colitis. Radiation will affect part of the collon so that a colonoscopy should be carried out in advance to define the field of attack. 

In other words, your investigation should not end with the result of the MRI. You can go further to find the best weaponry for the attack. The choice will then be the best at your hands to proceed with determination.

Best wishes,

VG

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