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need imput on hormone therapy

Ohorvie
Posts: 2
Joined: Aug 2018

My husband has been diagnosed with prostate cancer. Psa was 25. Dr didnt tell us the Gleason score. His recommended treatment plan is combined therapy of Hormone therapy and radiation. Cancer is contained to the prostate. Bone and ct scan was clear.  We are currently getting a second opinion. We would like to know the opinions for those who have had the therapy and if they are glad they went that way for treament or if they regret it.  He will be on the hormones for 2 years. He is 65 yrs old and other than this is in great physical health. Would appreciate any info. Thanks!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

Ohorvie,

Welcome to you.  You need to get a paper copy of your husband's biopsy results.  It will be of value to you both later.  It will be free, and no doctor can reasonably refuse your request.  Even if his results are available online (very common today), get a paper copy.

His condition is probably worse than the doctor is letting on at present. A (convention) PSA of 25 is astronomical.  It is good that his CT and bone scan were negative, but they absolutely do NOT prove the lack of metastasis.  MOST doctors assume that PCa (prostate cancer) has spread with a PSA that high.   CTs are poor at detecting metastatic disease, and false negative results are quite common.

Treating metastatic PCa is tricky, and requires a lot more still than attacking early-stage disease.  But know that it is virtually always very controllable, and many men here have lived way more than a decade with cases that initially sounded worse than what you report regarding your husband.

HT and radiation are to be expected in his situation.  Surgery is counterindicated in new cases presenting with a PSA that high, so it is fitting that the doctor did not mention surgery.

Again, know that this is very likely extremely managable, and he probably will move forward with good quality of life from this development. Other here are much more conversant with hormal therapy than I am (I have never needed it myself, but have followed several friends through it).  These HT experts will hopefully write soon,

max

 

 

G53
Posts: 33
Joined: Jul 2018

Max,

I do not agree with you. A PSA of 25 is not astronomical, it just indicates a high risk PCa. I would guess a Gleason 7 or 8. I know of a patient that came to the doctor with a PSA value of 6,000. Bone mets all over, no pain. After starting hormone therapy the PSA value got down below 1.0 for a while.

If bone scan and ct are clear, surgery is still an option. I agree that there may be undetected mets but many patients get surgery if bone scan and ct are clear.

G53

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

I had a friend die with PCa, not long after his PSA hit 1,000. I know that what constitutes "astronomical" may vary, but by any criteria, a PSA of 25 at initial diagnosis is very high, much higher than average for most men (at initial diagnosis).

And it is essentially universally held that a CT is close to worthless in detecting metastatic PCa, until it is vary advanced indeed. Yet bone scans and CT continue to be routine.  A negative bone scan and CT are to be desired, but should not give an individual a false sense that they therefore have minimal disease, buecause doing so is not clinically justified.

Every book and article that I've read suggests that most doctors assume metastasis with a PSA much over 10. It is the Best Practices, and safest, way to proceed.   I've noted that you do not agree, so enough said. His thread is not a ring for us to duke out our differences of opinion.  

You might have noted that what I have written accords with what his doctors have said and planed thsu far.

max

mtop
Posts: 18
Joined: Jan 2017

Ohorvie,

I can give you some insight on my expererience with hormone therapy. Some info first;

I was diagnosed with prostate cancer at 64.  Had biopsy of prostate done 10/15, 12 cores samples taken six of which showed cancer. Four w/Gleason 4+3=7 and two w/Gleason 4+5=9, 60 to 70% of prostrate involved with tumor. Classified as high risk. Had PET and CT scans done cancer is belived to be non-metastatic. Was given choices for types of treatment. But was advised by doctors to do surgery followed by seven weeks of radiation and ADT (hormone therapy.) Which I ended up doing.

Hormone that I'am on is commonly referred to as Lupron and I have been on it for about two years now and I contribute it to keeping my cancer at bay. My PSA levels at last testing was 0.014 classified as undetectable, they have been at that level for a while now. Having said all that Lupron can come with some not so fun side effects. Many of which I currently deal with. First it was hot flashes, which went away after a short while. Right now I'am dealing with memory loss, weakness, muscle loss, tiredness (all the time,) rashes, and just recently a new fun one, bone loss in my left femur (Osteopenic.) There are many ADT drugs that the doctor may choose from, some may not have the same side effects. But ADT is given to reduce male hormones so most may have alot of these side effects. But again I only know of the ones I have on Lupron. I get one shot every three moths.

Good luck to you and your husband, mtop.

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

The combo of Hormone plus Radiation has become common in prime treatments for prostate cancer. The hormonal component (HT) is palliative, it does not cure but it improved the attack with radiation (RT) that kills the cancer. Two therapies higher the side effects and health risks affecting the quality of life of the patient, which should be taken into account in the decision. Surely anyone can opt for radiation alone and get cured too but when the case regards aggressive type of cancerous cells then adding HT is reasonable and appropriate. The present NCCN guidelines recommends this combo and such could be the reason behind his doctor's proposal. I wonder about the Gleason rates found in the biopsy.

The RT may be indispensable in his treatment. It is HT that makes you to think twice. However, the therapy is good as it manages to stop further spread or advance of the cancer when this responds to hormonal manipulation.
HT causes chemical castration (hypogonadism) which involves all traditional menaupose like symptoms apart from changes in mood, blurred vision and loss of recognition. Some of our brain functions are affected to certain extent but it all resolves (or almost all) when one stops the treatment. My present treatment consists of hormonal ablation done intermittently. I was on HT during a period of 18 months which made me to experience almost all symptoms pointed out by the many, but some were mild and some almost not noticed. Fatigue and libido less was terrible and my testicles become sort of spongy balls. Sex took a different approach. Mood changes were there occasionally. I never took medication to counter the effects and instead I used life changing tactics like having dinners earlier and afternoon naps. I also changed my diet and started a fitness program. Overall it was fine to me but some guys have experienced nasty situations. I started experiencing a relief from the HT side effects four months since the lost of the drug's effectiveness, returning all to a normal acceptable status at the tenth month post treatment. This is my 5th year in vacations off drugs without the side effects.   

HT can cause other health risks such us kidney disease, cardiovascular issues and bone loss. One should be prepared for such occurrences with periodical tests and exams. Bone densitometry scan, ECG, Testosterone blood test, the total lipids count including those related to liver and kidney matters should be included. I would recommend you to get tested before starting HT treatment.

The survivors of this forum can help you understanding facts. Just let us know more details on your husband's diagnosis and drop the questions.

Best wishes and luck in his/your journey.

VGama

Josephg
Posts: 151
Joined: Jan 2013

Ohorvie,

I welcome you to the Board, as well.

You will find that the folks here are fantastic in providing personal information and experiences, solid layman suggestions, as well as a phenominal amount of freely-provided information that each has personally researched on PCa.  I've had both surgery and the combined hormone/radiation salvage therapy.  You can find a discussion of my personal experiences on the combined hormone/radiation salvage therapy at the link below, titled 'Salvage Treatment' and dated 10/30/2013:

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

I wish you the best of outcomes on your journey.

Ohorvie
Posts: 2
Joined: Aug 2018

I want to thank you all for your responses. The experiences of others is such a comfort. There is no greater advice than listening to those who have went through it.  Like I stated earlier, we are still waiting to go see the 2nd opinion Dr.  We go on the 14th, so we would appreciate your prayers for wisdom in our decisions! Thank you all again and God bless you!

 

Old Salt
Posts: 720
Joined: Aug 2014

that one cannot determine the seriousness of prostate cancer from the PSA value. 

Let's see the biopsy report. And yes, waiting for that is hard!

With that report in hand, we generally recommend to get a second opinion on the Gleason scores. That infomation should allow us to discuss treatment options. It's my opinion that much of what has been written in this thread is premature. 

Grinder
Posts: 438
Joined: Mar 2017

Are we assuming there is no other cause for the high PSA score, and therefore must reflect excessive antigen release from activated cancerous prostate cells... or are we assuming that there may be other causes of antigen release such as BPH or infection or sexual activity or any such combination, along with activated cancer cells?.. and the somewhat excessive PSA score is not as threatening.

I think this should be clarified for Ohorvie.

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

I'm late to the party here, as I just checked in this morning... but I am two years into my treatment and my case is very similar to your husband's. But in my case it could have gone either way. At 65 I was right on the edge of the surgery or no surgery dividing line. Five years older and my surgeon said he wouldn't do it. My (2nd) biopsy was just over two years ago, and at G8 also I was right on the line. If there had been any grade 5 component he would have recommended radiation over surgery.

My last PSA pre-op was done early 2016 by my GP and it was 25. That was the impetus to get the second biopsy. I'm afraid that I must disagree with Max and side with G53 on this one. Although a PSA over 20 is one of the factors that classified my case as "high risk" (at that time, very high risk) everything appears to have worked out. I have been on hormone ADT for eighteen months and my PSA has been zero. I was told immediately after surgery that I would require adjuvant radition, which started one year ago and was completed with many of the more common side effects.

Do not despair, Ohorvie. Your husband stands every chance of getting thru this successfully. While the bone scan and CT are indeed poor diagnostic tools, they are intended to detect bone mets, not to rule them out. Such a finding would indeed alter the treatment plan. But it is not metastatic until it is proven to be metastatic.

I chose surgery as the first salvo to take out the motherlode of the cancer. I do not regret it in the least. It allowed the surgeon to actually get in there and see what is going on. And the post-op pathology report provided greater certainty regarding what treatment path to follow thereafter... which was far better than relying solely on external scans.

artie
Posts: 30
Joined: Jun 2018

That is a long time to be on hormones since the cancer is confined to the prostate.Hormone therapy has a lot f side effects.

SantaZia
Posts: 64
Joined: Apr 2018

Sorry, you guys have to go through this. I would recommend that you have a second opinion on your pathology report and some genetic testing done. I received a second opinion from John Hopkins which was covered by my insurance and the genetic tests; Prolaris and a PTEN test.  I am in my 4th month on Lupron 2 months to go while receiving 44 radiation treatments. Here is what the Lupron has accomplished PSA.12 from 12.7 T. Total <7 from 869. T3 MRI 9.5.18 "The prostate gland measures 3.0 x 2.6 x 3.4 cm in CC, AP, and transverse dimensions, for a total prostatic volume of 14 mL. Post-surgical changes of prior transurethral resection of the prostate gland again noted. The prostate gland now demonstrates mildly diffusely decreased T2 signal throughout, consistent with interval hormone therapy. The focal 1.8 cm PI-RADS 5 lesion seen within the right mid gland extending into the base and apex on the prior MRI is no longer visualized as a focal lesion. No other focal prostate lesions are seen."  There are side effects as everyone has pointed out. Exercise and diet will help deal with those and many use couples counseling too. But as you can see if your husband need HT it is very useful in treating PC.  Best wishes to you both.

Georges Calvez
Posts: 228
Joined: Sep 2018

I second the others that say wait for the biopsy and the Gleason score, a high PSA means that the tumour is doing what prostate cells do, they churn out PSA, particularly if they have a low Gleason score then they do it far faster than normal prostate cells.
It is indicative but there are a lot of exceptions.

GeorgeG
Posts: 127
Joined: May 2017

Sorry that you found us but we’re glad that you are here.

i agree that biopsy results are needed for a more complete picture. A PSA history is also usually used to****** the situation by understanding things like the doubling rate.

do I understand correctly that the only treatment that your husband has had is hormone therapy? Did you discuss any other treatment options at diagnosis such as radiation, surgery,  seeds, etc?

George

 

artie
Posts: 30
Joined: Jun 2018

He needs Radiation plus hoormone therapy.Hormones won't kill the cancer but will make the radiation more effective.

artie
Posts: 30
Joined: Jun 2018

has anybody taken testostorone booster to get testoterone back to normal after radiation and HT?

Old Salt
Posts: 720
Joined: Aug 2014

It would be good to know your testosterone history (current and past levels with dates). And when you stopped hormone therapy and the 'strength' of the last dose. Age plays a role as well; older guys recover more slowly, or don't (fully) recover at all. 

More in general, testosterone supplementation after prostate cancer therapy is controversial. 

Please start a new thread since this topic is completely different from the original thread.

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