HealingWell
Search Close Search
☰

How do you know if enough time has elapsed for HT to be effective?

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/22/2012 7:26 AM (GMT 0)
I've read a couple of cases that are extremely similar to my husband's. It seems in each of those cases, they were on HT for at least a year before there was a significant reduction in the tumor. In both cases, the tumor was completely gone after 18-24 months. My husband has only been on HT for 8 months. (I don't say ONLY lightly)

Since my husband's medical onc is stating that "right now is your ONLY chance of attaining a possible remission," which would be accomplished by removing his bladder, prostate, seminal vesicles, nerve bundles and lymph nodes.... We are curious as to why the sudden urgency, when it is possible that continued HT could possibly resolve the tumor at least off of his bladder.

Many people tell us that choosing life over a bladder is a no-brainer and we totally get that. However, life with a bladder would be optimum.

We are also aware of the many cases of men with a much lower risk tumor still needing radiation and then possibly HT after surgery. Why should we believe this surgery on an extremely high risk advanced person would produce better results than those with much better stats going into surgery?

about a month ago, the urology onc said that there was no hurry for surgery as long as the "pause" button was still in place. We are wondering what has changed in their urgency, as his PSA is now at .1 with no indication that the pause button has been lifted.

I think we asked so many questions in an attempt to get those answers that we ticked the med onc off, yet still never got a solid answer.

We do have a 2nd opinion coming in a week and would like to be better armed with questions that might actually generate answers.

Any thoughts?
Posted 2/22/2012 7:33 AM (GMT 0)
"CONCLUSIONS

• RP appeared to be insufficient as a single treatment for patients with SVI.

• The findings of the present study suggest that adjuvant ADT combined with RT after RP for patients with SVI confers a substantial benefit on 5-year bNED survival."

Source:http://onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2011.10332.x/abstract

Considering once his bladder is removed, he is precluded from having RT, that leaves us where?
Posted 2/22/2012 12:52 PM (GMT 0)
I certainly am no expert on this.
I have been following your posts though and it seems to me that the doctors were trying to find the best life extending solution to a relatively young person's extensive prostate cancer.

I thought that their goal was to first debulk the tumor using HT and then to debulk and possible even eradicate the cancer through surgery. It seemed like a good plan to me - but counterweighing that were the qol issues because of the location of the cancer that would mean loss of the bladder and probably the nerves resulting in potential importance issues.

The thing is that I don't really understand the alternatives. The issue with HT is that for many the tumor cells eventually gets hormone resistant. If your husband does high dose brachytherapy instead of surgery where will that leave the cancer in his bladder. Or is the thought to do RT with HT over the long term and skip out on the surgery option altogether?

I note that you mention other patients you found in your research with similar cases. What did they do?

Regards,
An
Posted 2/22/2012 7:57 PM (GMT 0)
An...thank you for your reply.

In the two other cases, a longer period of HT resolved the tumors off of the bladder and in one case, completely off the prostate as well.

He is not a candidate for brachytherapy because of the size of the tumor. RT and HT is an option instead of surgery, and one we are considering.

I guess what we are really wondering is why not let the HT work its magic a little longer to see if it at least resolves off of the bladder. His initial weak stream is back to normal, and he has no other symptoms other than those typical of HT side effects.

We're just getting so many mixed signals... first, no surgery or RT until HT could debulk, then they were going to do chemo, then no chemo, then zytiga, then changed mind to chemo... had chemo, no surgery needed as long as the "pause" button was in place, and now this urgency to do the surgery as his ONLY window of chance to possibly attain a remission.

If the HT debulked the tumor by 25% in 6 months, maybe it would debulk it 50% by 12 months? His PSA has continued to drop from 57 to .1 on HT alone. We're trying to understand the urgency when we feel that the chances of him being in remission beyond the knife or RT are slim to none. Much less aggressive cases seem to have proven that.

Yes, they will remove the bundles without a doubt... so permanent QOL issues are surrounding us.

Maybe a better question would have been, "Does one become hormone resistant sooner if there is a larger tumor load to attack?"

Again, thanks!
Posted 2/22/2012 9:06 PM (GMT 0)
OK, so let's post that question:

"Does one become hormone resistant sooner if there is a larger tumor load to attack?"

I have no idea. I believer that it would depend on the strain of PCa more than the amount of PCa.

I expect that John T. or Ralph might have more guidance on that?

Posted 2/22/2012 10:22 PM (GMT 0)
142... Should I actually post the question as a new topic?

Don't want to be a bigger pest than I already am. :)
Posted 2/22/2012 10:46 PM (GMT 0)
MsWorryWart,

I would ask Dr. Scholz that question when have your consultation. That way I would think about framing the question .. your husband's cancer is systemic and a systemic treatment approach (HT, chemo, Provenge, etc.) will be core. So, in that context, does having a more invasive type procedure such as surgery or radiation buy more time more time before the cancer becomes hormone resistant? If it does buy time, how much more time (ballpark)? Which approach buys more time? Surgery or radiation? Once you have that rough answer, then it becomes a personal decision. For example, if removing the bladder buys 5 more years or 10 more years or more? Is it worth it? If surgery and radiation buy the same amount of time, I would certainly opt for the radiation. Not sure this helps but at least that is way I tend to think when adding more treatments. Another point about buying time, the systemic treatments may be much improved in 10 years. So, 10 more years could turn into more at a later time with treatment advances.

Posted 2/22/2012 10:52 PM (GMT 0)

MsWorryWart said...
An...thank you for your reply.

In the two other cases, a longer period of HT resolved the tumors off of the bladder and in one case, completely off the prostate as well.

He is not a candidate for brachytherapy because of the size of the tumor. RT and HT is an option instead of surgery, and one we are considering.

I guess what we are really wondering is why not let the HT work its magic a little longer to see if it at least resolves off of the bladder. His initial weak stream is back to normal, and he has no other symptoms other than those typical of HT side effects.

We're just getting so many mixed signals... first, no surgery or RT until HT could debulk, then they were going to do chemo, then no chemo, then zytiga, then changed mind to chemo... had chemo, no surgery needed as long as the "pause" button was in place, and now this urgency to do the surgery as his ONLY window of chance to possibly attain a remission.

If the HT debulked the tumor by 25% in 6 months, maybe it would debulk it 50% by 12 months? His PSA has continued to drop from 57 to .1 on HT alone. We're trying to understand the urgency when we feel that the chances of him being in remission beyond the knife or RT are slim to none. Much less aggressive cases seem to have proven that.

Yes, they will remove the bundles without a doubt... so permanent QOL issues are surrounding us.

Maybe a better question would have been, "Does one become hormone resistant sooner if there is a larger tumor load to attack?"

Again, thanks!

Hi MrsWW,
A larger tumor volume could possible contain more androgen independent tumor cells (because of it proliferation rate) and it can be more difficult to control and become resistant sooner. That said, your logic makes sense because of your husband's response to 8 months of HT and recent chemotherapy. The proposed surgical treatment is certainly a life changer. Why change the present course before it stops working? There are many new and potentially effective therapies in the horizon. Walk before running...and question the value of such radical surgery at this time, Ask what would be the downside of doing it later, if needed.

RalphV
Posted 2/23/2012 1:08 AM (GMT 0)
According to Dr Myers 1 out of 1 million prostate cancer cells will turn refactory. (over a million cells can be the size of a pin head). Just doing the math says that the larger the tumor burden the more cells will turn refactory.
He uses this arguement for starting HT as early as possible. Debulking tumors is a standard practice. Bladder involvement adds a major complication to this as the effects are much more than simply removing the prostate or some lymphnodes. You would really have to look at the complications arising from a bladder removal.
JT
Posted 2/23/2012 1:08 AM (GMT 0)
According to Dr Myers 1 out of 1 million prostate cancer cells will turn refactory. (over a million cells can be the size of a pin head). Just doing the math says that the larger the tumor burden the more cells will turn refactory.
He uses this arguement for starting HT as early as possible. Debulking tumors is a standard practice. Bladder involvement adds a major complication to this as the effects are much more than simply removing the prostate or some lymphnodes. You would really have to look at the complications arising from a bladder removal.
JT
Posted 2/23/2012 3:49 AM (GMT 0)
Southern Comfort.. thank you! Yes, if we had a ballpark of say.. Survival rate is approximately 5 years with HT alone and 5.5 years with surgery. Well, he feels like those extra 5 months aren't worth the QOL losses. So he would abandon the surgery for the time being until the next rounds of troubles present themselves.

RalphV...Thank you! We too, are hoping if the HT can continue working until some new treatments on the horizon might give him life and QOL!

JohnT... Thank you for the info on the refractory stats. Yes, removing his bladder alone, does not come without significant additional risk and complications.

Thank y'all so much for taking time to reply. I often feel like a pest beating the same horse... but as I think deeper about certain aspects, I end up with unanswered questions. I do believe that knowledge is power and I want to be as powerful as possible in helping my husband survive this with the least amount of collateral damage possible.

It gets confusing when out one side of the mouth they are talking about keeping him alive 20 years and then out of the other, suddenly the discussion of him becoming hormone refractory at the average of 18 months.... of which he has already used approx. 8 of those months. Yet, can't tell us what changed.

Again, thanks so much. Truly appreciate the help.
Posted 2/23/2012 4:23 AM (GMT 0)
From what I've learned regarding HT and effectiveness, it depends on:

1) The percentage of PC cells that are already independent and more importantly

2) The ability of the PC cells to build a workaround

So, it stands to reason that the larger the tumor burden, the more of the bad cells you;d have. Hence, hit it sooner rather than later.

Mel, who is getting closer to HT, again

Posted 2/23/2012 11:39 AM (GMT 0)
I have read that even in advanced cases surgery extends lifespan by removing the oldest and therefore the most dangerous cancer in the body.

I am not sure that waiting for the HT to debulk to 50% is where you want to get to as it still is 50% of a lot of tumor. I get why the doctors want to remove the main tumor- they want to remove the vast majority of it and I imagine then hit the rest with HT, chemo etc.

Of course this doesn't make it any easier for both of you, the qol issues and the choices are not easy. I wish you all the best.

Regards,
An
Posted 2/23/2012 1:25 PM (GMT 0)
Sounds like you have to get not a 2nd opinion, but 3rd and 4th. I mean, there are probably many cases like your husband out there and doctors who have treated them. Before such a risky OP, I would get as many opinions as possible. Did I understand right, that the doctors are planning to remove prostate, bladder and some lymph nodes? Do they know where exactly the cancer is, or are they just guessing?
Posted 2/24/2012 9:37 AM (GMT 0)
Mel... Do you know if there is any way of testing the different types of cells and/or their ability to work around?

An38... I understand your point. I mentioned 50% as we are only hoping to give the HT a chance to possibly resolve from the bladder and then have surgery to remove the prostate and nodes...

SpecialLady, I am trying to set up a 3rd appointment. Yes, you understood correctly. They will remove his prostate, bladder, and all lymph nodes, and create an Ileal Conduit/stoma.

They have scans showing it is clearly into the bladder trigone area and he has had one lymph node biopsied which indicated adenocarcinoma. The other larger nodes were too dangerous to biopsy.
Posted 2/24/2012 1:34 PM (GMT 0)
ARe you guys still scheduled to see Dr Scholz? If he is going to have the surgery, where would that be done? I am following your post and thinking about you guys!

Cajun Jeff
Posted 2/24/2012 4:36 PM (GMT 0)
Worrywart:

No, they do not know how to test for this. Otherwise, they would have a superb handle on how well HT would be likely to work.

Mel

Posted 2/24/2012 5:47 PM (GMT 0)
Mrs. WW,
Although there is no practical way to measure the ratio of androgen-dependent to androgen-independent cells in a patient’s tumor load, one clue is the PSA response after a period of deprivation. In your husband’s case HT controls the androgen-dependent cells while chemotherapy affects both types of cells. At present your husband’s response to this combination treatment is working well.

Recently (in the last 5 years) science has been using a test to measure circulating tumor cells (CTC) to try to measure the efficacy of applied treatments. This is something you might consider.
See:
tinyurl.com/7rcz3xv

There are several new products in the research pipeline. These are promising for PCa patients. Some are approved others will be approved in the near future. To name a few: MDV-3100, ARN-509, Zytiga, TAK-700 and Provenge. Stay positive and keep doing what you are doing for your husband.

RalphV
Posted 2/24/2012 10:10 PM (GMT 0)
Cajun Jeff... Yes, we see Dr. Scholz in a week. The surgery is scheduled for mid March at MD Anderson. Time is drawing near...

Mel... I agree. And by the way, in case I overlooked thanking you for the head's up on where to stay... Thanks! We did book there.

RalphV... Thanks for the info. We did ask the Med Onc at MDA about CTC test and he said he didn't see any value in it. That sort of removes some off our confidence. That and the fact he said he never heard of Dr. Scholz. Name didn't even ring a bell to him. Of course he did give us 5 names of his "friends" at other academic institutions, but we don't want a friend. We want an unbiased opinion.

All of this is really starting to get to us.

We asked about putting the surgery off for a bit to let the HT continue and Med Onc was adamant that NOW was his ONLY shot of a possible remission, yet couldn't tell us why or what had changed. That alone instills more fear and apprehension.

I don't like fear instilled decisions. We agree that life over a stoma is a no-brainer, but prove the urgency, state your case, and then we can wrap our brain around it. Vague answers... not so much.

Thanks all!
Posted 2/25/2012 5:34 AM (GMT 0)
Here is an article on HT, it say's memory loss is a side affect of hormone therapy
and this article says that hormone therapy actually causes cancer to spread
this article really makes it sound like i would be better off without hormone theropy


http://drleonardcoldwell.com/2011/11/10/prostate-cancer-treatments-spur-cancer-to-grow/

is this true? do you agree with or know anything about this? what do you think?
Posted 2/25/2012 8:25 AM (GMT 0)
Jaxxum... there is t least one part that is sort of screwy to me and immediately grabbed my attention...

“It’s always been assumed that blocking the androgen receptor will stop all prostate cells from growing, but we have found that that’s not the case."

I think that is incorrect. I think it has been assumed that it will stop androgen dependent cells, and that androgen independent cells are not fazed by HT because they have somehow learned to produce their own fuel.

So, I have to disagree with his statement. I don't recall anyone ever telling me that HT will stop ALL cells from growing. Quite the contrary.

Also, I am having trouble determining how one of the sources listed actually backs up his claim.

I do know that since HT, the tumor shrunk about 25% and that the symptoms he had prior to HT are now gone... except the usual side effect of said HT.
Posted 2/25/2012 2:40 PM (GMT 0)

MsWorryWart said...
Jaxxum... there is t least one part that is sort of screwy to me and immediately grabbed my attention...

“It’s always been assumed that blocking the androgen receptor will stop all prostate cells from growing, but we have found that that’s not the case."

I think that is incorrect. I think it has been assumed that it will stop androgen dependent cells, and that androgen independent cells are not fazed by HT because they have somehow learned to produce their own fuel.

So, I have to disagree with his statement. I don't recall anyone ever telling me that HT will stop ALL cells from growing. Quite the contrary.

Also, I am having trouble determining how one of the sources listed actually backs up his claim.

I do know that since HT, the tumor shrunk about 25% and that the symptoms he had prior to HT are now gone... except the usual side effect of said HT.

What do you mean "it's always been assumed"?......AND wouldn't your PSA levels tell you what is really going on with your PC cells.
Posted 2/25/2012 4:04 PM (GMT 0)

MSWW said...
Thank y'all so much for taking time to reply. I often feel like a pest beating the same horse...

MSWW,

Don't ever feel like that...you are amazing in your search for the best treatment option....keep up the great work...post as often as you'd like...a plan will develop...

JL

Posted 2/25/2012 4:50 PM (GMT 0)

jaxum said...
Here is an article on HT, it say's memory loss is a side affect of hormone therapy
and this article says that hormone therapy actually causes cancer to spread
this article really makes it sound like i would be better off without hormone theropy


http://drleonardcoldwell.com/2011/11/10/prostate-cancer-treatments-spur-cancer-to-grow/

is this true? do you agree with or know anything about this? what do you think?

Jaxum and all,
This is a prostate cancer mouse model study. The authors generated a hypothesis. Studies in mice have resulted in PCa cures. In effect the hypothesis here is an explanation of why ADT as a therapy almost always fails in time and is not curative.

Why some men diagnosed with advanced prostate cancer respond poorly to androgen deprivation? The answer is that in such patients, the tumor load which typically starts being androgen-dependent in early disease progression is becoming more and more androgen-independent in time even BEFORE diagnosis. This natural evolution to androgen independence in prostate cancer is the cause of poor response to androgen deprivation. This is why early androgen suppression is recommended by some experts.

The authors offer this hypothesis to explain the failure of ADT to be curative. Unfortunately they do not offer a solution for the androgen receptor to be only a suppressor of disease promotion. It seems that the new and improved antiandrogens in the research pipeline might fill this void...

The article in question can be seen at:
tinyurl.com/7e59mqf

RalphV
Posted 2/27/2012 6:57 PM (GMT 0)
My husband had his Prostate removed because they did not think the cancer had spread.  However, they ended up also having to remove his seminal vesicles, lymph nodes, and nerve bundle.  The cancer had also spread to the outer wall of his bladder, so the surgeon removed the growth but left the bladder.  He is now on monthly injections of Fermagon, which is apparently the Gold standard for Stage 4 PC.  Both PSAs since surgery have been <.1.  I sound more optimistic than I am.  It will undoubtedly rear it's ugly head again at some point in the future.

I understand the QOL issue.  I don't know how my husband would have handled that.  He is already dealing with depression and anxiety, pain, and exhaustion.  Most doctors do not deal with the concept of QOF.  They are trained to prolong life.  You need answers to your questions.  Sadly, you'll probably have to be a pain in the patootie to get them from your doctor as it seems to make him uncomfortable.  Too bad.  Please keep posting.  You've helped me more than once - let us return the favor!

 

✚ New Topic ✚ Reply
12