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Confused about diagnosis

User
Posted 07 Apr 2019 at 09:23

My dad had been diagnosed with enlarged prostate in 2010. In the same year he had heart failure so that was medical priority . He’s been on diuretics and goes often during the night , so presumed it was that and not his prostate acting up. 

He mentioned it to the doc in September and his psa was 7 and he was referred to urologist. They were bringing him back in 6 months but calcium in is blood was  very raised so in the meantime they brought him back. Between first and second appointment he had severe bone pain so they sent him for a bone scan.

GP gave him anti inflammatory for pain but it wasn’t always masking it. In last two weeks his health has deteriorated he couldn’t walk 6 inches without losing breath. He is in hospital a week today they diagnosed a bleeding ulcer causing the anaemia and a slight dose of pneumonia . They told him the bone scan shows cancer and are waiting for ct results . They started him on a hormone tablet and stopped it after a day. They said they are 95 percent sure he has prostate cancer with spread to bones . They want to do a biopsy but his heart is very bad and it would be extremely risky . He’s still in bad back pain and very weak . Anyone had treatment Without a biopsy . I’m his only care giver 

User
Posted 07 Apr 2019 at 10:42
How old is your Dad?

Cheers, John.

User
Posted 07 Apr 2019 at 10:53

I slightly disagree with Cheshire Chris: A biopsy is never irrelevant, as it can indicate the source of the metastases, which may be useful if cytotoxic chemotherapy is being considered, and even without that, it can inform on how aggressive and advanced the cancer is.

But from what you say, chemotherapy seems an unlikely prospect in your father's case as he would probably not be able to cope with the chemo regime. You don't say how old he is, or give much detail about the extent of the bone metastases, but I suspect that comfort and expert pain control are the priority here: has hospice care been mentioned?

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 07 Apr 2019 at 11:03
I was diagnosed last August with PC. MRI and CT scans confirmed that there was a spread and it was agreed that a biopsy would show nothing new and it was better to push on with early chemo alongside the hormone injections. So far this seems to have been a good decision. My PSA is down from 5806 to just 6.6 over about six months. Only problem for me not having a biopsy means I would not be accepted for any trials.

Best wishes

David

User
Posted 07 Apr 2019 at 18:16

Could be 50mg bicalutamide.

This is given for a couple of weeks before and a week or two after starting Zoladex.

Zoladex stops production of testosterone, but when you first start it, it causes a short boost in testosterone (called a flare) which can be quite painful if you have bone mets. The bicalutamide blocks the testosterone receptors so the testosterone flare can't get to the testosterone receptors in the mets.

Another possibility would be 150mg bicalutamide instead of the Zoladex, but that wouldn't be just for a month.

User
Posted 09 Apr 2019 at 17:02
If they did decide not to give any active treatment for the prostate cancer, it would be because they felt the treatment could cause more damage than the actual cancer. The ethical dilemma for the multi-disciplinary team (the meeting on Friday) will be whether treatment can be offered that does not make his heart problems worse.

It is unlikely that they would decide to do nothing but if they did, you would no doubt find a strength that you don't even know you have, because the most important thing would be to keep dad calm and not allow him to become frightened or distressed.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Apr 2019 at 17:18

That changes things a little. It probably means that the biopsy is no longer required.

Have the doctors told you any more yet?

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 10 Apr 2019 at 09:29
Good to have a plan: with his heart condition, he would not be able to cope with more radical treatment - but while he will benefit form the hormone therapy, that will be hard work for him, so you'll need to ensure he gets monitored carefully going forward.
.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 10 Apr 2019 at 11:15
It is very unusual for a PSA to rise from 7 to 1000 so rapidly; they might be wanting to see whether it is the common form of prostate cancer (adenocarcinoma) or one of the more rare types - there are at least 27 different types and some don’t respond to hormone treatment as well as others. Or perhaps they want to check that he doesn’t have two different cancers at the same time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Apr 2019 at 11:18

If he hasn't had any long period of hormone treatment before, then the prostate cancer is usually powered by testosterone. The hormone treatment will prevent the body producing testosterone, and that will stop the cancer growing, and it can even shrink. This should also reduce any pain from bone mets. PSA is likely to fall to single figures and can even drop lower than 1 (although possibly not with a starting point of 1000).

This treatment can last many years, but eventually the cancer mutates and learns to grow even without testosterone (referred to as castrate resistant, although the hormone therapy is being used instead of castration nowadays). When the hormone treatment starts failing other drugs are added to try and slow the cancer growth, e.g. bicalutamide (150mg, a higher dose than you're on now) typically adds something like 6 months to the effectiveness.

The loss of testosterone has side effects, most specifically to sexual function. However, there are others too such as loss of body hair obtained a puberty (and conversely, prevention and sometimes reversal of balding, loss of body odor). He may also get many symptoms of menopause, such as hot flushes, and osteoporosis. The latter when added to bone mets significantly increases risk of bone fractures, and additional medication may be given to try and counteract that.

The bone biopsies - my guess is they want to be sure this is just prostate cancer and not some other type of cancer. Prostate cancer is relatively easy to slow down in the initial stages with hormone therapy as above, but many other cancers aren't, and if they find some other types of cancer, additional treatments may be required or they could be looking at different medium term prognosis.

Edited by member 10 Apr 2019 at 11:26  | Reason: Not specified

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User
Posted 07 Apr 2019 at 10:36
It's quite common for people to have treatment without a biopsy in cases where a scan has shown clear evidence of bone mets. A biopsy essentially determines the risk that prostate cancer will spread to other parts of the body; when this has already occurred, the biopsy become irrelevant.

Best wishes,

Chris

User
Posted 07 Apr 2019 at 10:42
How old is your Dad?

Cheers, John.

User
Posted 07 Apr 2019 at 10:53

I slightly disagree with Cheshire Chris: A biopsy is never irrelevant, as it can indicate the source of the metastases, which may be useful if cytotoxic chemotherapy is being considered, and even without that, it can inform on how aggressive and advanced the cancer is.

But from what you say, chemotherapy seems an unlikely prospect in your father's case as he would probably not be able to cope with the chemo regime. You don't say how old he is, or give much detail about the extent of the bone metastases, but I suspect that comfort and expert pain control are the priority here: has hospice care been mentioned?

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 07 Apr 2019 at 11:03
I was diagnosed last August with PC. MRI and CT scans confirmed that there was a spread and it was agreed that a biopsy would show nothing new and it was better to push on with early chemo alongside the hormone injections. So far this seems to have been a good decision. My PSA is down from 5806 to just 6.6 over about six months. Only problem for me not having a biopsy means I would not be accepted for any trials.

Best wishes

David

User
Posted 07 Apr 2019 at 11:09

Originally Posted by: Online Community Member

I slightly disagree with Cheshire Chris: A biopsy is never irrelevant, as it can indicate the source of the metastases, which may be useful if cytotoxic chemotherapy is being considered, and even without that, it can inform on how aggressive and advanced the cancer is.

Nevertheless, it is quite common for no biopsy to the carried out in cases where there is clear evidence of advanced cancer!

Best wishes,

Chris

 

User
Posted 07 Apr 2019 at 12:17

Thank you he is 72 I can’t understand why they are pushing for biopsy. They told me it’s in the bones and king bones from bone scan . I’m worried about his pain levels If they go back to hormone tablets will that reduce the pain

User
Posted 07 Apr 2019 at 13:28

Originally Posted by: Online Community Member
I can’t understand why they are pushing for biopsy.

From what you've said, they do not know for certain that it's prostate cancer. It could have another origin. Bone metastases occur in many cancers (small cell lung cancer, for example), and treatment options will be very different.

For example, prostate cancer, even quite advanced, responds to hormone therapy, but other cancers almost certainly will not. It would not be helpful to give him hormone therapy (with all the side effects) if it gave no benefit. You don't say why they stopped the hormones after just one day.

I am confused as to your objections to a biopsy.

A prostate biopsy is a fairly minor procedure: hormone treatment or cytotoxic therapy are both much bigger risks for a man in the weakened condition you describe for your father, and there are ethical issues about giving a dangerous treatment that may be the wrong dangerous treatment.

I know that biopsies may not be taken where no active treatment is planned, but  - other than local radiotherapy - I don't think active treatment could be considered without a confirmed diagnosis.

Originally Posted by: Online Community Member
MRI and CT scans confirmed that there was a spread and it was agreed that a biopsy would show nothing new and it was better to push on with early chemo alongside the hormone injections. So far this seems to have been a good decision. My PSA is down from 5806 to just 6.6 over about six months.


A PSA of 5806, combined with scans, is a pretty firm diagnosis. Littleredcar's Dad had a PSA of 7 in September, which is really not a conclusive diagnosis, even with positive bone scans.

Edited by member 07 Apr 2019 at 13:37  | Reason: Not specified

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 07 Apr 2019 at 14:02

I’m not objecting to the biopsy they seem to want it but said it would be very complicated for him and risky due to his heart issues. They told me on Wednesday 99 percent sure and now they have told him 95 percent . They told me Wednesday they were anxious to get him started on the hormones and started that day. Then I checked his file on Friday and the hormone was only given for one day. They had a class  on Friday to discuss options but have not discussed anything with him. I asked the nurse why the hormone was stopped and she said it was the urologist decision . One doc mentioned that when they did a exam on him they found a mass on his prostate 

User
Posted 07 Apr 2019 at 14:07

Thank you for your information it’s all new to me. Do you think they will offer no treatment 

User
Posted 07 Apr 2019 at 17:48
Are you sure it was a hormone tablet they gave him, and not an injection of Degarelix?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Apr 2019 at 17:52

Thanks lynn no it was a tablet began with a b . The doc said he would be on it for the month. I’m just back from seeing him in the hospital he is hoping to be home tomorrow but is very weak. they gave him blood last week his count was 8.6 and it went up to 9.3 on Wednesday I just asked and it was 7.1 yesterday and 8.1 today 

User
Posted 07 Apr 2019 at 18:16

Could be 50mg bicalutamide.

This is given for a couple of weeks before and a week or two after starting Zoladex.

Zoladex stops production of testosterone, but when you first start it, it causes a short boost in testosterone (called a flare) which can be quite painful if you have bone mets. The bicalutamide blocks the testosterone receptors so the testosterone flare can't get to the testosterone receptors in the mets.

Another possibility would be 150mg bicalutamide instead of the Zoladex, but that wouldn't be just for a month.

User
Posted 07 Apr 2019 at 18:47

That’s what it was definitely . I can’t understand why they stopped it after a day 

User
Posted 07 Apr 2019 at 19:10

I can't make sense of it, either, though from your description, 'no active treatment' must be one of the options. But that does not mean they can't / won't do anything for his symptoms and comfort.

I suggest it's time for you - as his son and carer - to seek an interview with the consultant to be told what they're thinking.

Whatever they say, it's clear, I think, that the priority at the moment is to get his pain sorted out. If there is a hospice in your area, I'd suggest you get your GP to refer him, as they are usually the best people to advise on cancer pain, especially at home.

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 07 Apr 2019 at 19:26
The urology team may just need advice from cardiology before they decide what to do. It is true that bicalutimide is needed for a couple of weeks before starting Prostap or Zoladex hormone treatments, to prevent tumour flare. However, both Prostap and Zoladex can be problematic for men with serious heart problems. Degarelix is a bit safer for these men, and does not need bicalutimide first.

If it is decided not to give any active treatment, this is more likely to be due to interaction between treatment and the heart problems than to the actual cancer.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Apr 2019 at 19:38

If you can't get to see the consultant quickly, see if they have MacMillan nurses there. They also attend the Multi-Disciplinary Meeting (at least where I'm being treated) and they can check the notes and tell you what's going on. You can probably get to see the nurses much faster.

They will need to be sure your father is happy for them to discuss his case with you first though. That might already be recorded in his notes if you've done that before with someone there.

User
Posted 07 Apr 2019 at 19:48
I think the way that Macmillan nurses are deployed in your area is quite unusual Andy - certainly not common nationally and from what you say, it seems that your hospital uses Macmillan nurses in place of the urology clinical nurse specialists?

As littleredcar’s dad has been diagnosed whilst an inpatient, he probably doesn’t have an oncologist or urologist yet and there is unlikely to have been an MDT meeting as these are used to assess diagnostics from outpatient referrals. Being diagnosed late and via inpatient routes can be quite difficult to manage as the ward doctors need to liaise with all relevant departments, including urology, oncology, cardiology, radiology but the general admissions consultant will be the king maker.

While he is still an inpatient, have you tried reading his notes?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Apr 2019 at 20:27

Thank you for your words of wisdom. I’m in Ireland we don’t have McMillan nurses. They mentioned a class about my father on Friday . I’m just really worried and concerned they won’t give any treatment . I don’t think I’m strong enough 

User
Posted 09 Apr 2019 at 15:47

His psa is now 1000

User
Posted 09 Apr 2019 at 17:02
If they did decide not to give any active treatment for the prostate cancer, it would be because they felt the treatment could cause more damage than the actual cancer. The ethical dilemma for the multi-disciplinary team (the meeting on Friday) will be whether treatment can be offered that does not make his heart problems worse.

It is unlikely that they would decide to do nothing but if they did, you would no doubt find a strength that you don't even know you have, because the most important thing would be to keep dad calm and not allow him to become frightened or distressed.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Apr 2019 at 17:18

That changes things a little. It probably means that the biopsy is no longer required.

Have the doctors told you any more yet?

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 10 Apr 2019 at 07:58

Apparently he is going back on tablets today and 3 monthly injections . They mentioned radiology too and a possibility of a bone biopsy 

 

User
Posted 10 Apr 2019 at 09:29
Good to have a plan: with his heart condition, he would not be able to cope with more radical treatment - but while he will benefit form the hormone therapy, that will be hard work for him, so you'll need to ensure he gets monitored carefully going forward.
.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 10 Apr 2019 at 09:58

What am I to expect from the hormone treatment . Has anyone had psa risen so quickly to 1000. 

What is the need for the biopsy of the bone 

User
Posted 10 Apr 2019 at 11:15
It is very unusual for a PSA to rise from 7 to 1000 so rapidly; they might be wanting to see whether it is the common form of prostate cancer (adenocarcinoma) or one of the more rare types - there are at least 27 different types and some don’t respond to hormone treatment as well as others. Or perhaps they want to check that he doesn’t have two different cancers at the same time.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Apr 2019 at 11:18

If he hasn't had any long period of hormone treatment before, then the prostate cancer is usually powered by testosterone. The hormone treatment will prevent the body producing testosterone, and that will stop the cancer growing, and it can even shrink. This should also reduce any pain from bone mets. PSA is likely to fall to single figures and can even drop lower than 1 (although possibly not with a starting point of 1000).

This treatment can last many years, but eventually the cancer mutates and learns to grow even without testosterone (referred to as castrate resistant, although the hormone therapy is being used instead of castration nowadays). When the hormone treatment starts failing other drugs are added to try and slow the cancer growth, e.g. bicalutamide (150mg, a higher dose than you're on now) typically adds something like 6 months to the effectiveness.

The loss of testosterone has side effects, most specifically to sexual function. However, there are others too such as loss of body hair obtained a puberty (and conversely, prevention and sometimes reversal of balding, loss of body odor). He may also get many symptoms of menopause, such as hot flushes, and osteoporosis. The latter when added to bone mets significantly increases risk of bone fractures, and additional medication may be given to try and counteract that.

The bone biopsies - my guess is they want to be sure this is just prostate cancer and not some other type of cancer. Prostate cancer is relatively easy to slow down in the initial stages with hormone therapy as above, but many other cancers aren't, and if they find some other types of cancer, additional treatments may be required or they could be looking at different medium term prognosis.

Edited by member 10 Apr 2019 at 11:26  | Reason: Not specified

User
Posted 10 Apr 2019 at 17:02

He’s just been to radiology and told he’s starting treatment this day next week. I’m only family member and work full time - will this be every day ? 

User
Posted 10 Apr 2019 at 17:17

It depends what they're doing - you will need to ask.

Curative radiotherapy to the prostate/pelvis is usually 5 days a week for at least 4 weeks (and usually more). I don't know if radiotherapy is ever given to the prostate palliatively (can't think why it would be).

Palliative radiotherapy to mets is I think usually a lot less in frequency, sometimes just a once-off to a specific area.

User
Posted 10 Apr 2019 at 20:27
They might be planning to give palliative RT to stabilise some bone mets and reduce the pain, in which case it will be either 1 visit or daily for a few days (usually a maximum of 5). Since they have not suggested a few months of HT first, it doesn’t seem like they are suggesting the radical version of RT, which is between 4 and 7 weeks of daily visits.

Would your employer allow you to have some time off, even just to go to the first session and find out what’s what? The appointment for RT is usually very quick.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 10 Apr 2019 at 21:28

I think my employer will be good I hope so 

 
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