our story

[DiRi]

I think that the collective knowledge available on this site is very valuable. Jim Marshall has spoken with me over the phone on a couple of occasions when I was struggling to understand what may lay ahead for my husband after we received the diagnosis of his prostate cancer.  With a PSA of 100 he was sent off promptly for a bone scan that reported "widespread metastatic deposits within the pelvis and also in the right proximal femur, L3 vertebral body and 10th left rib"  The report further notes that the lesions are lytic which the urologist explains are the case with 5% of patients. The urologist requested a bone biopsy that determined the cancer to be 'adeno carcinoma' which was good news among a sea of bad news.

A subsequent visit to the Urologist got the ball rolling with some ADT starting with a 240mg dose of Firmagon to be followed up a month later with Lucrin.  This has given my husband some pain relief so must be doing the job.  .The urologist also requested a PSMA PET scan.  Results of this detail lymph node involvement/

Having had one meeting with the radiation oncologist when he asked my husband what his understanding of his condition was - my husband told him that the local GP had said to him he could expect 2 years to live - the oncologist replied in no uncertain terms "no, 10".  We didn't question his positivity. 

There has been no mention of chemo at this early stage and I am hopeful that the radiation will give my hubby some much needed pain relief.

 

I welcome any feedback that may be helpful to us at this stage.   

[metungboy]

Hi Di Ri,

the conversation about prognosis is always fraught. The difficulty thing to grasp is that the GP and the oncologist are both correct and both wrong. When people are discussing prognosis they expected to be something that is accurate and predictable. It is not. What most doctors mean when they discuss prognosis and expected years of life is a thing called a median survival. This means that if the median survival is say five years that 50% of people have died within that five years but 50% are still alive. There is no way of predicting which group you are in. This means that at the very best survival numbers are "guidelines"

I also have metastatic prostate cancer with very extensive disease in multiple bones. When I was trying to assess my own survival probabilities and possibilities I looked at things that would increase my risk and things that would decrease my risk.

The things that increase my risk of dying earlier than the average 50% median survival are the fact that I have extensive disease in the bones, the fact that I have lymph nodes that a positive all the way up the abdomen to just under the diaphragm. I also have disease in what the experts call non-axial bones. This means I have disease in my skull and my left upper jaw as well as in my humerus and necks of both femurs. The whole of the left side of my iliac crest, which is the rim of the pelvis is full of cancer.

The things in my favour are that I have no disease detectable in my liver kidneys lungs or brain, so-called soft tissue lesions.

The other thing in my favour is that I am pretty fit and this morning I rode my  bike 72 km. Yesterday I swam a kilometre and I attend the gym at least twice weekly. So how does anybody work out how you are going to go with this disease when you have some things that make it more likely you will live longer and some things that a war make it less likely you will live longer?

I am a doctor and I have discussed these issues with patients for years and there is no easy answer. The real answer to how long will I live is I don't know. It is useful to know that 50% of people with my disease will be dead in 54 months. It is only mildly useful because it does give me some guideline about what is likely to happen but I have no idea which percentage group I will wind up in.

My attitude is probably considerably flavoured by my experience with my patients. I am certainly not suggesting that my approach to my problem is translatable for your husband. I am only telling you how I have thought my way through this issue from both sides of the fence. I have done it as a doctor for years and now I am on the receiving end but my view has not really changed.

My view is to plan for the worst and hope for the best. There is considerable risk to excessive hopefulness and I have seen more troubles and more suffering and more disasters from excessive hopefulness than I have from pessimism about prognosis.

 I have not seen any problems from people who accept the reality of their mortality but strive hard to live the best they can. There is considerable evidence that a positive view about living life and enjoying life results in a more enjoyable life. There is no evidence that a positive view extends life. In some strange way this gives me a sense of security knowing that every effort that I make to enjoy my life will give me considerable short-term gain but the biology of my cancer is not my responsibility.

my hope is that the technology of cancer treatment which is at the moment changing very rapidly will change rapidly enough to give me more options. For me this is a hope not an expectation.

I also hope that what I have written for you is not too distressing but these are my views.

[alanbarlee]

G'day Di,

Your partner's Gleason score would add to the data you shared with us, since it is a fair predictor of the cancer's aggressiveness, based on the microscopic appearance of biopsy, or better, surgical tissue samples. Based on what I've read over the years, there's an increasing tendency in oncology to fight fire with fire: if you have a high GS ( 4+3 or higher) or/and a short PSA doubling time (less than a few months) , it seems to be increasingly preferred to hit the cancer hard with multiple treatments before it has had a chance to mutate to more heterogeneous / more resistant phenotypes.

Based on what you've said, youpartner r  might want to discuss with his medonc the pros and cons of chemotherapy (docetaxel with a low-dose cortico-steroid) in conjunction with your present ADT2. Based on recent and well-received large trials like CHAARTED and STAMPEDE, this combination in cases like his seems to to be moving to 'standard of care' status with early treatment metastatic prostate cancer. For many men the side effects were found to be quite tolerable, and the efficacy was substantially better than with either therapy used alone.

Similarly, post-RP radiotherapy is a proven king-hit, especially with lymph node mets. Your partner's RT specialist should be able to advise him on this - without or with the chemo addition to your ADT2.

Also, keep in mind the upcoming posibilities of treating his bone mets with radium-223 (Xofigo), or both bone and nodal mets with 177-lutetium/PSMA. The first of these has been proven overseas and by the Australian TGA (Therapeutic Goods Administration),  but is subject to the gauntlet of satisfying the government's commercial MSAC processes before it can be added to the Medicare-subsidised list. The second has had very good results in trials overseas and here, and a larger trial is expected sometime this year: he might want to ask his medonc to consider recommending him as a candidate for this trial when enrolments open.

He has lots of promising options - forget the GP's prognosis, which is uninformed and inappropriate. I agree completely with the previous member's comments on this, and on his philosophy in relation to 'playing the ball where it lies', while remaining fit, positive and  fully engaged in life.

Best wishes,

Alan

 

        

[DiRi]

Thanks Alan & metungboy - we don't have a Gleason score and did ask but were told there wasn't one because the biopsy was done from the bone not prostate.  The urologist was reluctant to do a prostate biopsy as he had seen one done in a man with similarly high PSA and the patient had a bad internal bleed hospitalizing him for 3 days.  Is it possible to have a gleason score from a bone biopsy.?  They haven't been able to determine how rapidly the psa has risen as my husband's last psa test was in 2009 when it was 2.5.  He had a DRE back then and was told all was good and GP said no need for a biopsy.  I do recall at the time watching an episode of Qantum where there suggested that too many men were being biopsied unnecessarily.  

I will certainly take all your suggestions to the next visit to the Oncologist re chemo and treatments for his bone mets.

My hubby starts radiation next week and has been told he will have 17gy for 5 days.  The nurse told him to expect that he should start to feel human again after 2 weeks post treatment.

I am wary also of excessive hopefulness or pessimism and at the moment I don't know how to feel.  I read some things that I prefer not to pass on to my husband like the statistic that only 40% or so of patients get pain relief from radiation - he is so very hopeful for pain relief. 

Thanks again

 

[Admin]

A doctor we had to give us a talk told us that the very first thing that should always be attended to is pain.

He said that if pain is not under control, you should be onto your doctor, or his nurse about a change in the pain treatment. And if that change is not good enough, you should be in touch again.

 

Jim

[Paul Edwards]

Many doctors simply prescribe Androgen Deprivation Therapy without discussing with the man & his partner the side effects of the treatment. DiRi, I don't know whether this happened to you & your partner. 

 

I would highly recommend " ANDROGEN DEPRIVATION THERAPY  - An Essential Guide for Prostate Cancer Patients and Their Loved Ones" by Professor Richard Wassersug. It's available as an ebook for US $9.99. It has excellent advice about the various side effects & how to overcome them.

 

One of the side effects of ADT is that it decreases bone density.  It is important when starting ADT to have a bone density scan to use as a baseline to monitor changes in bone density whilst on ADT.   We find that many doctors put patients on ADT without getting a bone density scan.  If your partner has not had a baseline bone density scan, he should insist on having one.

[DiRi]

 Paul, thanks for your advice - I did a bit of research when my hubby was prescribed ADT.   Its funny when I told relatives what treatment my hubby was starting and they did some research and asked me  "its got some bad side effects, are the doctors sure it will work?".  I think there was no question about refusing it as it seems to be the only thing on offer to halt the cancer growth.  When my husband finishes radiation, he will ask about having a bone density scan done for sure.  I found a fair bit of information in the Cancer Council booklet " Understanding Prostate Cancer"  relating to the side effects and relationships.

[metungboy]

ADT is still by far the most effective treatment and it was worked out in the 1940's!

the side effects aren't fun but they are better than a much quicker death. I was worried that without testosterone I would not be able to maintain my muscle mass and strength but I have been able to increase it slowly. I was very cautious because I have extensive bony disease and I don't want to break.i have been attending a very controlled gym called KIESER and have had a physiotherapist and exercise physiologist help me design a program.i am steadily increasing the weight and I am now doing this without their supervision. It is only 2 sessions per week at the moment but I think I will soon go to three. As I have posted before I also swim and bike ride when I am in the less onerous part of the chemo cycle.ADT for me is worse in some ways than chemo because it doesn't wear off. Chemo is worse when it is at its worst but it does stop. I think of it as a bit like a short severe pain compared to a prolonged mild pain. I know what I would choose but I have no realistic other choice.

[MBarry]

Hi Di

I'm just new to this site and sorry to read your story. I have had Stage 4 PC since Nov 2015. Still trucking along pretty well at this stage.

One thing that did strike me is that you seem to be seeing a Radiation Oncologist and a Urologist. Apologies if I am reading this wrong but I would strongly suggest that you seek an opinion from a Medical Oncologist.In my experience they have the best overall knowledge of modern medical response to cancers (as I say, in my opinion!). Best to try and find one who specialises in Prostate Cancer.

Best wishes

Martin

[metungboy]

Hi Di,

Turf wars are common in medical and surgical treatment.

I am a doctor with bad disease and the most useful doctor so far for me is my GP.

She is a "generalist" star and fills the gaps left by the "narrowists". When I was working as a full time doctor I used to refer to "specialists" as " limited practitioners".

 They are a great resource but they often don't get the perspective I need.

The most important thing is to find someone in the system you trust and understand and then use them to interpret the often complex and contradictory stuff you get from everywhere.

It really does not matter which medical stream they come from.

Does the person get you or not?

For me it is my GP.

Her skills are amazing.

She is across the issues, not the detail, far more skillfully than the good but "limited practitioners" I see.

 

 

[DiRi]

Hi - Barry, so glad to hear that you are doing well and yes, we now have an appointment to see an Oncologist. Our last visit to the Urologist was of little value and they said we would now be in the hands of the Radiation Oncologist.  With the 5 day radiation treatment nearly finished and the first injection of Lucrin due at that time, I guess the Oncologist will let us know if chemo will be of benefit.

I've got lots of questions for the Oncologist, now that I'm armed with a bit more information.

I understand exactly what you're saying too metungboy about finding someone who you feel you can trust and understand - we are dealing with the Public System and I understand that the Multi-Disciplinary teams can be of great advantage, but it would be great to deal with one person!

 

 

[metungboy]

multidisciplinary teams definitely bring benefits. They also have problems.

The benefits are the accumulated wisdom and knowledge of various experts, but the problem that often arises is that there isn't a single practitioner who is driving the process. This results in time wasting and often lack of clarity for the person that matters, that is you or your loved one, the patient. So if you are in the public system you need to find someone, as I have said in previous posts, that you trust and someone who will "own the problem" and guide the process. That person needs to have a very good general knowledge of the system and of the illness but does not need to have the highly specific knowledge of  a radiation ecologist or medical oncologist or urologist. I have been a participant in multidisciplinary meetings and there is often considerable disagreement about which way to go. Eventually an agreed path is reached, but the answers are not always clear and each craft group brings a view and sometimes a prejudice.

Despite all of these problems there is considerable benefit and this has been proven in multiple disease streamsl.

For you to get the best of both worlds you need your "champion", and as I have said before this can be anybody in the disease management business. For me it is my GP. Whoever you choose should help you decrease your contact with the other specialists and health providers to the minimum required. I have arranged to decrease my contact with nearly all of them except for at the moment my medical ecologist as I am having chemotherapy, but I do not waste my time sitting in a multitude of health providers waiting rooms just to be patted on the head or reviewed. There are a minimum number of reviews that are required when processes are changing but one person can nearly do it all and if they can't they know what is needed from the other providers. This way I feel I get the best of the multidisciplinary team without the problems.

 

Also have a look at this.   Click on this link to read about The Impact of Exercise on Cancer Mortality, Recurrence, and Treatment-Related Adverse Effects

[Paul Edwards]

Thanks metungboy for the article about exercise and cancer.   There's plenty of other material in the forum about the benefits of exercise.

 

Dr Mark Moyad who will speaking to us next month believes that Australians are world leaders in the research into exercise and prostate cancer, particularly Prof Rob Newton and Prof Daniel Galvao and their team at Edith Cowan University in Perth.

 

One of the co-authors of the paper mentioned by metungboy is Dr Prue Cormie, now at the ACU Melbourne, but formerly at Edith Cowan.  We have had Prue Cormie speak to us previously.