Father (86y.o) has 'Advanced, aggressive' p.c. Help!

Pam

Hi, I'm new to this website, and I wondered if you could shed some light for me?

My father is 86 this month, and has p.c. He does not discuss much of his p.c. with me, so I'm pretty much in the dark. I am not sure if this is because the news is really bad and he wants to protect me, or whether he simply doesn't ask important questions while he's with the oncologist, but I doubt this, as he was a pharmacist and is a realist.

I'm left googling to try to make sense of some of the bits he tells me. It's not going to give me the accuracy I need, as I could look up things that are worse than where he is in his illness, and be worrying unnecessarily.

When I've asked him, point blank, if he knows how bad his cancer is, he'll say, "Pam, it's aggressive", or "Pam, it's advanced prostate cancer". To me, this implies that the cancer has spread beyond the prostate, probably to the bones, possibly further. He's got really weak knees now, but he attributes this to the hormone therapy. To me, it would be more in line with tumours in his knees, yet he has never said this, and to my knowledge has never had radiation to decrease obvious pain in his knees. (I thought this would be a course of treatment for bone cancer in your knees, so maybe he doesn't have any bone cancer?) I just don't know!

About 2 years ago his psa shot to 33, and he had an operation. They removed part of his prostate, but the rest of him is intact.
After that, he commenced hormone therapy (around 2 years now). His psa has been really low until recently, so I'd put worrying on the backburner.

But recently his psa had climbed a little, and his oncologist has taken him off hormone therapy, is waiting 3 months, and if psa continuing to rise, will commence chemotherapy.

This really scared me. I don't see how his psa could not rise without the hormones to keep it in check, so I see no option other than to commence chemo.
My questions are:

1) Is it normal to have a 3 mth break to see what psa does, prior to commencing chemo? Is this to make sure all hormones have left his body? (He had his hormones via 3 monthly injection into his tummy, near belt buckle).

2) Is it worth him commencing chemo? I know the side effects can be horrendous. Will chemo just exhaust him unnecessarily, or does it really offer a better quality of life for whatever time he has left?

3) Googling about p.c. patients commencing chemo is very glum. Life expectancy is about 12 months. Is this correct?
It seems ridiculous, as I am looking at a very healthy 86 y.o, with no outside symptoms, who is able to live independently, goes out alot, cooks for himself, and still has a very sharp wit. How can cancer that's suddenly able to bypass hormone therapy kill a man like this in a year?? Just seems ludicrous!

3) With no gleason score available to me, and no staging known to me, how can I possibly know how 'advanced' his cancer is?

4) Does 'advanced' or 'aggressive' mean it's gone to his bones? He's never had radiotherapy to ease any pain, but he's got terrible knees, and his back seems to bother him.

5) He's also quite breathless. An earlier xray picked up a dark patch on a lung, but he wasn't bothered by it. His doctor was concerned this week by his breathlessness, and has ordered more xrays of lungs this week. Results will be in next week. He also has a persistent cough, but has always blamed the hormones for the cough.

He lives on his own and Dept of Veteran Affairs has modified his home. He's extremely independant, and extremely private. I doubt he'd let me go to the specialist with him. But I feel so in the dark, and left out. I guess I want to know how bad he might be. I want to spend as much time with him as I can. I don't want any regrets about not spending enough time with him. But I don't want to keep asking him how bad it is, as he'll say I'm being morbid. When we've talked about it, I start to cry, and he hates that, and makes me stop, and he then talks about something else and it's clear I'm not allowed to talk about p.c.

I don't want to lose him ever, but I know I will.

Can anyone shed some light on how bad he might be, with no gleason to guide us? I remember asking him what his gleason score was once, and he had no idea what I was talking about!

I realise 86 is a great age, but he is from a family who life a long time, and 96 is quite common, so, to me, losing him before 90 seems very unfair. I'm sure that he thinks it's pretty unfair too!

Thanks,
Pam
_________________
My Dad's an oldie but a goodie. I'm going to be strong for him, so that I can help him ride the rest of the journey. I love him so much.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 742

Welcome to the forum.

I'll try to address your points and questions. I'm just a layperson, of course, so I'm just trying to fill in some information for you, not provide direct advice or second-guess a doctor.

First of all, it's very common for men in their 80's to have prostate cancer, but from what you've written, your father's cancer is a threat to him, (unlike the majority of men who have some indolent disease by that age).

From what you wrote, it sounds like he does have advanced disease. I'm surprised that you wrote that they surgically removed *part* of his prostate. That's the first time I've heard of what sounds like a partial prostatectomy. I would be more inclined to believe they took the whole thing.

We can't diagnose over the web here, so none of us can tell you if it's metastasized to bone. If it has, it's still NOT bone cancer. It's still prostate cancer. A small point, but important--there's no reason to go hunting for information about bone cancer if he doesn't have it.

If his doctor is moving from hormone therapy to chemo, that would be an indication that his current therapy is not working. He *MAY* be hormone refractive, where hormone therapy no longer controls the cancer. But a good oncologist will try several tricks before calling it quits with the hormone therapy. Walsh, in his book on p. 486, writes under the heading "If Your PSA Level Begins to Rise Now, What Should You Do?", talking about advanced PCa: "If your testosterone is in the castrate range and you're not on an antiandrogen, you should try taking one to see if this makes your PSA fall. Some men are helped by this. If, however, you already are taking an antiandrogen in addition to castration, estrogens, or an LHRH agonist, try stopping it. In some men, going back and forth--stopping an antiandrogen, starting another one, stopping that one, restarting another one--causes repeated declines in PSA and stretches out the time that hormonal therapy can control cancer. For example, if you are taking Casodex, and your PSA level begins to rise, you can try stopping it and waiting for about 6 weeks to see if your PSA level goes down. If it doesn't, or if it does then rises again, you can try another antiandrogen and repeat the same sequence. Some men--especially those who respond to this sequence--will respond to other hormonal approaches such as estrogens or phytoestrogens. Another option is Nizoral (ketoconozale), given along with corticosteroids."

As to your numbered questions:

1.) See above. I'm not sure if what the doctor is doing is in line with what Walsh writes, because you didn't include what medications your father has been taking. He was probably NOT getting hormones injected into him, but probably something like Lupron, which *deprives* him of the male hormone testosterone. But it sounds like we don't know for sure what has been tried so far.

2.)From what I've read, chemo for prostate cancer is not nearly as bad as chemo for other cancers. The main strategy is taxotere plus prednisone. I believe most men tolerate it well. Your father can always stop it if he decides it's not worth it. But I wouldn't be frightened of the treatment.

3.) Once chemo commences, you're right that the clock is running. But it's impossible to predict for any individual patient. Chemo is not nearly as effective against prostate cancer because chemo works best against cancers that reproduce very rapidly. Prostate cancer, even when advanced, is not nearly as fast at reproduction as other cancers. And MAYBE it's NOT time to commence chemo. Your father really needs to be in the hands of a skilled medical oncologist and NOT a regular urologist. Medical oncologists know all of the strategies and are informed about the latest research. I'm sure they bend over backwards before giving up on hormonal therapy.

3.) Good point. You don't know. At this point, really useful information to help you gauge how things are going would be bone scans and PSA scores--if your dad will share his medical record with you, those will be there. It does sound like things are pretty far along, though, if his doctor is considering chemo. If

4.)Impossible for us to tell, but bone scans would answer that. You're correct that if he has bone metastases that cause him pain, local radiation can help relieve that on a spot basis.

5.) The breathlessness and spot on his lung sound more imminently threatening (to me, just a guy on the street) than prostate cancer. Whatever is going on there, it's causing him trouble, and it sounds like prostate cancer is NOT causing any difficulty right now, unless some of that pain comes from it. It is entirely possible for prostate cancer to spread to the lung. It's one of the most common cancers to do so. I would pay very close attention to this.

I hope I don't sound cold. I wish you and your dad the best. If he doesn't want to talk about it, don't push it. Just be there for him. We on this board will be here for you, to support you as much as possible in an online forum.

If you think you or your dad might benefit from face-to-face support groups, I encourage you to call the American Cancer Society or visit the website cancer.org. ACS maintains a database of all kinds of cancer support groups across the country. ACS assistance is available 24 hours a day, and they provide information free of charge.

Best wishes. Your dad is lucky to have a daughter like you.

P.S. Johnw100 is a member who knows more than I do about advanced PCa, and hopefully he will post his thoughts here soon.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

johnw100

Pam,

It is a difficult situation when he's reluctant to share his details with you: as you said he probably wants to protect you.
I believe St Vincents has a good Prostate Cancer support group and you can access their newsletter online. It might be worthwhile if you could suggest that he attend their monthly meeting or his local group meeting. Maybe you could offer to take him to a meeting.

Two heads are better than one: I used to go with my Uncle to his specialist consultations and when he had his hormone implants.
It's very handy to have someone to make relevant notes and ask the right questions.
You could point out the logic of this, but if he want's to do his own thing there might well be little you can do in that regard. It's important for him to remain active, so you can help him in that regard.

You need to read the book by Dr Myers, " Beating Prostate Cancer: Hormonal Therapy & Diet", which is the best publication on this subject to my knowledge.
A friend from Sunshine Coast who has advanced PC with bone involvement sent me a copy which has been very helpful. He has done well on hormone therapy for the past few years, and has posted his story on the yananow website where you can read the stories from men who have used various treatment options. They will also be happy to answer any specific questions you might have.

On the surface of it, and without knowing the full details, I don't know why hormone therapy would be discontinued if PSA increased a little: as Dr Myers says, most men who are diagnosed as Hormone resistant are not. A usual approach is to manipulate the therapy, as one of the alternative medications will often work more effectively.
Sometimes "intermettent" hormone therapy is used for a variety of reasons. eg if it is difficult to tolerate, or if there are severe side issues.

It's obviously not possible to know how advanced or agressive his PC really is, given the fact that he did not know what his gleason score was.

If he continues to be very private there are probably limitations as to what you can do, apart from continuing to give him support with regular contact and trying to keep him active by getting him out of the house where possible for example.

I know all that's easier said than done, but I'm sure he'll appreciate your support.

johnw100

Pam,

I should have included more information on my Uncle's situation as there are similarities:
he was also very independent, lived in his own home, looked after himself, and was very active and alert at 91 years of age.

Although I used to go to to his specialist consultations with him, we did not discuss Prostate Cancer a lot at other times. In fact I made a point not to raise the subject too often as it can easily consume one's thinking.
We made regular visits, and went with him to places of old that he might not have been to for some time.

He also had leg pain which he blamed on the hormone treatment. It was subsequently traced to circulation problems, not due to hormone treatment or PC. This limited his mobility as he had problems after walking a medium distance.

Although his PC was advanced and agressive Gleason 9, Uncle died recently from causes not related to Prostate cancer. He had problems due to food he had eaten when out one day, and being stubborn he did not see the doctor immediately. This delay caused what should have been a relatively minor problem to compromise his whole system within a few days.

Your father's lung problem is of concern: it's difficult to know whether that has any relationship to Prostate Cancer, but hopefully they can shed some more light on it soon, and assist in that regard.

In the meantime, do your best to make your time with him as pleasant as possible without dwelling on this subject. See if he wants to visit people and places he might not have seen recently.

Best wishes,

John

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

Pam,

Just a personal thought from a guy that instinctively puts himself in the role of looking out for others and being in charge (at least in my own mind).

It is easier to explain than to do, but, it is not realistic to expect your father to confide in you about a difficult prognoses when you cry from the emotional impact of the information he provides. His job is to keep you from that hurt and handle it himself. Unless you can at least convince him you are a bit more matter of fact, he will not beat you up with more information.

I fully understand that talk comes cheap but these seem to be the dynamics you are up against.

Good Luck with the challenges you and your Dad face.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

Pam

Hi Replicator, johnw100 and Hawk,

I had a really long response to your responses, but I somehow deleted it when I went to change the bottom of my profile. So, I've redone the response (below), but it is really quick and not nearly as wordy, and not as nice. Wish you could have seen the other one. Oh well.

Firstly, thanks to you all for replying so quickly. Your information about what we can do for Dad is great, and, on a personal note, thanks for helping me see that my teary responses haven't been helping my Dad at all!

I'm going to phone him once his results for his xrays of his lungs have been discussed with his G.P., and I'll try broaching the idea of me accompanying him to his next specialist visit.

I am going to make a big effort to control my tears, as I realise how unhelpful they are to him. Thanks for the advice on this, I'm not offended at all, I needed to be told.

If I get to accompany him to the specialist, I will be in a position to find out where Dad's at with p.c., and will be in a better position to know why chemo may be getting introduced soon, rather than changing hormones/dose of hormones to try to trick the cancer cells. Obviously, we'd like him to stay on hormone therapy as long as possible.

Thanks so much about warning us to watch out for his lungs. Fingers crossed there is no really bad news there!

I'll keep you all posted on how everything goes.

Once again, thank you for all the information you have given me. It's nice to be able to talk about it in a forum like this, with people who are very informed about p.c. and care so much about fellow sufferers.

Thanks,

Pam xxx
_________________
My Dad's an oldie but a goodie. I'm going to be strong for him, so that I can help him ride the rest of the journey. I love him so much.

Pam · Posted: Wed May 13, 2009 8:47 am Post subject: Update on my 86y.o. Dad

Hi,

Just wanted to share the good news that Dad's prostate cancer has not spread to his lungs. His xrays have come back clear, just a bit of pulmonary oedema, which he says is an OK result for his age.

I told him I've been worried, and that I've joined this forum to try to get more information from people who are also suffering p.c. I explained that these people are often right at the coalface of best methods to try and prolong quality of life for as long as possible.

He was receptive to this, and touched that I cared about him so much. I said "Of course I care about you, you silly old fart!" which made him laugh. I said I'd joined this forum and was really pleased with some of the info I've seen, and that I'd posted his story and the feedback I'd received was excellent. I mentioned how people wondered about his oncologist taking him off hormone treatment to see if his psa rose again, and, if so, possibly commencing chemotherapy. I explained that the reaction to this news on the forum was confusion. People wanted to know why the oncologist wouldn't perhaps try another type of hormone therapy, instead of jumping straight to chemo? I explained that the views were that often different hormones can continue to trick the cancer cells and therefore halt the p.c. spreading for a longer time. I told Dad this was very important, and perhaps we should broach this to the oncologist if the situation arises, as if continued hormone therapy can continue his quality of life for longer, it would be worth it's weight in gold. He strongly agreed.

Interestingly, he also mentioned that his understanding was that p.c. got dangerous once it had escaped into the lymph nodes. While it was contained, it wasn't such a problem.

This hints to me that his cancer has not left the local prostate region. Hooray!

Also, when I said that people wondered if he'd had all of his prostate removed when he had his operation, (I'd said 'partially removed'), and he said "No, you are right. They removed exactly 19%". So, there you are. Fingers crossed, he's in early stages! Maybe he'll keep going to his 90th birthday and beyond!!!

I told him that the feedback on this forum had also gently suggested that perhaps I should reconsider breaking into floods of tears every time Dad tried to tell me some negative news about his illness. Perhaps I could be more of a rock? He laughed, and said the forum sounded pretty good!

Thanks guys. You've all made a huge difference to increasing my communication lines with Dad already, and your information has been invaluable.

I'll keep you posted.

love, Pam Very Happy

_________________
My Dad's an oldie but a goodie. I'm going to be strong for him, so that I can help him ride the rest of the journey. I love him so much.

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

Pam,

Are you saying they REMOVED 19% OF YOUR DAD'S PROSTATE ???

I have NEVER heard of a single case of a partial prostatectomy in my life and I have done some extensive reading, interactions with support groups, and many consultations.

That is so unheard of that I can not accept that it is accurate information. If I had to bet my house, I would bet your dad has misinformation.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

Pam

Hi Hawk,

I haven't asked him about confirming this, but I know that this is what he told me recently over the phone!

Maybe he DID have his prostate removed, and 19% of it was cancerous??? Does this sound more feasible?

Pam
_________________
My Dad's an oldie but a goodie. I'm going to be strong for him, so that I can help him ride the rest of the journey. I love him so much.

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

Total removal and 19% cancerous sounds WAY more accurate. I am sure that must be the case.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

Pam

Hi,

My 86 y.o. Dad had been on hormone therapy for some time, with great psa readings, but 3 months back, his psa climbed a little, so his urologist decided to give him a 3 month break and see what his body did.

It's been 3 months, Dad had a blood test on Monday and had his psa results back today. Not good news. His psa is 87!

That's off the richter scale, from my understanding. I was blown away by how high that number is.

He's off to the urologist tomorrow. I guess he's straight onto chemotherapy now.

We talked about it, and I said from what I understand the side effects are not as severe as chemo with other cancers, but I urged him to discuss the pros and cons of starting chemo treatment with his urologist, and that he needed to ascertain whether his life will really be extended that much if he is on chemo as opposed to no chemo and no side effects.

If the life quality is compromised alot, and the chemo really doesn't offer much extension of life (one or two months, for example), we both seem to be of the same opinion that it probably is not worth going on chemo.

That said, we agree that it's only when death is staring you in the face that you cling on by the skin of your fingernails whether you are 18 or 80!

Does anyone have any idea on the quality of life on chemo for p.c.?

Is it worth not commencing treatment if quality of life is severely compromised?

Does anyone have an idea of life expectancy a) on chemo, b) with no chemo and no further treatment for p.c.? i.e. I know no one can answer exactly, but I'd like some idea of whether I'm looking at one christmas or five christmasses?

Does chemo treatment really make a difference to living longer?

Pam
_________________
My Dad's an oldie but a goodie. I'm going to be strong for him, so that I can help him ride the rest of the journey. I love him so much.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 742

Pam, from what I've heard over the past few years, chemo for prostate cancer is not as terrible in terms of quality of life, as it is for other cancers. It's also not as effective, unfortunately.

But before your father goes to chemo, there may be more tricks the doctor can try in terms of hormone suppression. A good medical oncologist would be the expert on this.

Best wishes.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

The common chemo used in PC is also commonly used with other cancers. The difference (I think) is that other cancer treatments often use combinations of drugs.

Even thought the chemo for prostate cancer is somewhat less severe, I think it would not be a picnic for a man in his 80's. I too would get too a prostate cancer medical oncologist and look for a few new tricks with hormone therapy as well as some phase II or phase III clinical trials. Most cancer centers have staff that try to match you to qualifying trials. Some of these trial "vaccines" are very easy on the system as are some of the other treatments that seem to slow cancer in patients that fail standard hormone therapy.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

Pam · Posted: Thu Jul 16, 2009 11:48 pm Post subject: Thanks for your prompt reply

Hi Hawk and Replicator,

I knew you guys would talk to me fast. I love how I never feel alone on this forum!

Dad rang me today after returning from the urologist. He has returned to hormone therapy. He didn't elaborate on why chemo was not the chosen path, and I had to make the call really quick as I had a tradesman here drilling holes in concrete (very noisy).

I said I was delighted to hear he was back on hormone therapy, as this was something I was hoping the urologist would consider before just whacking him onto chemo. I asked if the urologist seemed positive, and he said 'yes'. He seemed in OK spirits, which is great.

I'll talk to him more later, but yes, I was worried about a man his age going on chemo too, especially when there's not much meat on him to start with!

I'll know more later, and will come back to the forum when I know more, to talk to you.

Thanks always,

Pamela
_________________
My Dad's an oldie but a goodie. I'm going to be strong for him, so that I can help him ride the rest of the journey. I love him so much.

bkinne828 · New User Joined: 27 Jul 2009 Posts: 6

Pam, et al:
Just found out today that my 91 year old Dad's PSA is 2475. John, he sounds a lot like your uncle. Up until 3 weeks ago, he was active (working out, going to lunch, driving). He had an appointment with his urologist he didn't tell me about until after. He said that the Dr. would call with his PSA results. I asked him a couple of days later, and he said it had gone up and was around 100. The urologist wanted him to see his oncologist (last appt. was in Sept. Told to come back if there was pain), but he didn't think it was necessary. After that he wasn't able to sleep, was not communicating as much, not himself. He just kept saying it was insomnia so I took him to his regular Dr. He prescribed something for sleep that gave him relief, but I still had the nagging question of what was causing this. He got a little relief. Today my sister called his urologist. He told her about the PSA and said that my father was most likely in his final days. He says he's not in pain, he said that the sleep medicine helped him breathe. Is it possible for this man to be functioning like he is, with a decent appetite, interest in the Cubs and days away from leaving us? My brother, sister and I spoke with him today (he lives with me) and told him that we had made an appointment with his oncologist for Wed. a.m. He was diagnosed with PS at the age of 80, has had radiation, Lupron shots. I know this sounds disjointed, but that's the way my mind is racing. I just want to be sure he isn't trying to be too stoic, and I want to keep him with us at our home for as long as possible. He is such a good man. Is it too much to hope that maybe he'll be spared the pain my mom suffered when she passed from cancer. The mind boggling thing is he won't admit he had cancer. Never has. He said the spot they saw on his spine was just a callous where he leaned against the bleachers at my niece's soccer games. I just don't know what to expect. I want to have care in place in case he does start to hurt. He has to go up and down stairs to get to his room. He says he's not ready to move. I am floored.
janie

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