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Pumpkin

Hello,

We are newly diagnosed with Advanced with metastasis, 2 at this stage non-specific spots on the spine.  We have one consultation left before surgery to remove the prostate, which is in approximately 2 weeks.  If I understand correctly surgery will be followed by radiotherapy.

(1)  Could anyone suggest what questions are important to ask at this last consultation?

(2)  We are 2 hours from Brisbane and 1 hour from Toowoomba.  Could anyone explain the logistics of what radiotherapy requires.  I know people drive daily to Toowoomba for treatment, but the extra hour to Brisbane may be too much.  Can one drive?  Does it make you sick/tired? I'm sure just the daily commute would make you tired.  Can you sit in a car seat if you end up with sensitive skin around your lower regions.

(3) The surgery is private, however we are shocked by the out of pocket expenses even though we have health insurance.  Would having radiotherapy in the public system be inferior treatment than going private.  I have concerns about what money will be needed when future treatments are required, therefore making what we have last rather than blowing it all upfront.  Our children are 10 and 12, so I have to consider their needs financially as well.

(4) Is there one health care company that is better to be with than others?  We are with Qld Country Health.  They told me our policy covers prostate.  But the cancer care place said that radiotherapy isn't covered by health care and a ball park for a standard round of radio would be around $6K.

 

A lot to ask.  I would be extremely grateful for suggestions/advice on any or all of these topics.

Many thanks and I am already very grateful that this forum exists as yesterday I felt so isolated I didn't know where to turn and we hadn't been given any contacts yet. 

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Nev Black

I believe the Cancer Council have accommodation in Toowoomba and Brisbane where country people can stay during treatment. Take you from accommodation to your treatment centre and return you each day. That way you could return home for the weekends.

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ardee

Not clear what surgery you are speaking about ..... radical prostatectomy or spinal support surgery. Please can you clarify then I am sure you will get a better response. 

 

In the event it is an RP, that opens a number of questions. However, we do have a very good surgery tips document that is just too large to upload (36Kb). Feel free to e-mail me at rd@ancan.org, and we will send to you.

 

Onward & upwards, rick

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Barry&Bren

My dad has a veterans gold card so he likely went private but I could see no difference in radiotherapy or chemo between private and public. I myself had public chemo but not radiotherapy for breast cancer and the only difference I saw was the private ones got a booth with a curtain and the rest of us sat in a line of chairs. It was the same nurses and the same doctors in the clinic in Hervey Bay. In my breast cancer forum they are advising to go private on surgery, but public on chemo and radiotherapy. Your 6k is more likely to balloon in to 10k. The top voted cream to sooth the burning on radiotherapy is moogoo however if you are private they may give you a tube of something else. If it is a number of consecutive days in radiotherapy you may like to stay at a rellie or friends place to save so much travel.

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Charles (Chuck) Maack

If the mets are to the spine, I see no reason for surgical removal other than it may remove some bulk of the cancer that started in the prostate gland.  Also, as to radiation - where is the radiation intended? If to the prostate bed it will have no effect on the metastasized cancer in the spine.  You need some explanation as to the why and where.   

 

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Aussieflicker

Hi there - good luck! I had robotic prostectomy in Jan 2016, followed up by salvage radio in Feb last year. Your question answers from my pov!

1)  Make sure you understand the pelvic floor exercises and do them 
(2) For me, the radio was 5 times a week for 7.5 weeks. The treatment only takes 5 min or so, I arranged to be first in morning and then went to work afterwards. No pain, soreness, sensitivity but a little tired in arvo - knocked off work an hour or so early each day 
(3) I went private for surgery - wished I hadn't now - but the bastards play on your fear! My out of pocket was around $5k.My radio was public. There is nothing inferior about the public system once you are in it. Waiting is a problem sometimes but the treatment is excellent. My only serious ongoing costs are the pet psma scan which isn't covered by medicare or the insurance and that is around $700 - maybe once/year to see if they can see where the tumor (s) might be
(4) I'm with CUA - seem OK. If I was you - I would not get radio done privately
 

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Bruce Kynaston

Sorry to hear about the two  spots on the spine, but how confident is the radiologist that they are, in fact secondary cancer deposits? 

If so, treatment of the prostate is not urgent, as 'the horse has bolted'.

it really depends on that diagnosis by the radiologist.

if your doctor gently, and I repeat gently, 'thumps' over them and they hurt, then I would accept them as cancer deposits.

(I was a cancer doctor)

Bruce.

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Rozi

Hi....

1) If you're having radiation anywhere near the bowel ask about SpaceOAR gel or some other barrier gel. Also ask why you're scheduled for surgery if the PC is metastasised. depending on the amount of mets it might not be worthwhile having surgery. Some thought is that, if there rare only a few mets, that either surgery or rad to the prostate might be of benefit. Ask about ALL the possible side effects. ED and incontinence are common.

2) Search for subsidised travel over a certain distance in Qld. It's paid in other states so maybe in Qld too. I'm not sure about the sitting.

3) We have private cover put paid nothing for the radiation except the hospital excess of $500 x 2 in any year. I don't know why you'd be asked to pay. Public treatment is the same as private. Sometimes alongside the same patients. I have heard of people going public and getting the same onc that they were seeing privately.

4) We are with NIB but, as stated, weren't asked to pay for radiation. I'd be asking why the $6k figure!

 

have you had an MRI / biopsy? What is your Gleason Score?

Things to do:

1/ Start a file immediately and keep copies of all reports/results of scans, blood tests, etc. and any information regarding your Prostate Cancer. (It is your property and you are entitled to be given copies, or have it sent to your GP.) Should you at any stage change hospitals/doctors/specialists, you have your medical history available - saves time and even having to do additional tests, etc. You can also check PSA easily.

 

2/ Even though there are other systems being used e.g. PI-RADS (Prostate Imaging Reporting & Data System) and Epstein, the Gleason Score is still most widely used.

 

3/ Many hospitals and cancer clinics use the MDT (Multi-Disciplinary Team) System where, after diagnosis, your case is discussed by a Urologist, Surgeon, Radiation Oncologist and Medical Oncologist to determine the best form of treatment in your particular case.

 

4/ Familiarise yourself with terminology, different treatments, specialists, etc.

 

5/ For information regarding local Cancer support, etc, click on the links to PCFA, Cancer Council, etc.


6/Where possible, find your nearest Support Group and attend a few meetings, BEFORE making your final decisions. (Here you will be able to hear first-hand from those who have had experience in different procedures, treatments, etc.)

 

7/ Talk to your specialist about sequence of treatments BEFORE commencing a type of treatment. Should there be recurrence or metastasis later, you may qualify for more drugs on the PBS or admission to Cancer Trials. This might avoid the 'Crushing a Walnut with a Sledgehammer' effect.

 

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Pumpkin
2 hours ago, Bruce Kynaston said:

Sorry to hear about the two  spots on the spine, but how confident is the radiologist that they are, in fact secondary cancer deposits? 

If so, treatment of the prostate is not urgent, as 'the horse has bolted'.

it really depends on that diagnosis by the radiologist.

if your doctor gently, and I repeat gently, 'thumps' over them and they hurt, then I would accept them as cancer deposits.

(I was a cancer doctor)

Bruce.

 

1 hour ago, Rozi said:

Hi....

1) If you're having radiation anywhere near the bowel ask about SpaceOAR gel or some other barrier gel. Also ask why you're scheduled for surgery if the PC is metastasised. depending on the amount of mets it might not be worthwhile having surgery. Some thought is that, if there rare only a few mets, that either surgery or rad to the prostate might be of benefit. Ask about ALL the possible side effects. ED and incontinence are common.

2) Search for subsidised travel over a certain distance in Qld. It's paid in other states so maybe in Qld too. I'm not sure about the sitting.

3) We have private cover put paid nothing for the radiation except the hospital excess of $500 x 2 in any year. I don't know why you'd be asked to pay. Public treatment is the same as private. Sometimes alongside the same patients. I have heard of people going public and getting the same onc that they were seeing privately.

4) We are with NIB but, as stated, weren't asked to pay for radiation. I'd be asking why the $6k figure!

 

have you had an MRI / biopsy? What is your Gleason Score?

Things to do:

1/ Start a file immediately and keep copies of all reports/results of scans, blood tests, etc. and any information regarding your Prostate Cancer. (It is your property and you are entitled to be given copies, or have it sent to your GP.) Should you at any stage change hospitals/doctors/specialists, you have your medical history available - saves time and even having to do additional tests, etc. You can also check PSA easily.

 

2/ Even though there are other systems being used e.g. PI-RADS (Prostate Imaging Reporting & Data System) and Epstein, the Gleason Score is still most widely used.

 

3/ Many hospitals and cancer clinics use the MDT (Multi-Disciplinary Team) System where, after diagnosis, your case is discussed by a Urologist, Surgeon, Radiation Oncologist and Medical Oncologist to determine the best form of treatment in your particular case.

 

4/ Familiarise yourself with terminology, different treatments, specialists, etc.

 

5/ For information regarding local Cancer support, etc, click on the links to PCFA, Cancer Council, etc.


6/Where possible, find your nearest Support Group and attend a few meetings, BEFORE making your final decisions. (Here you will be able to hear first-hand from those who have had experience in different procedures, treatments, etc.)

 

7/ Talk to your specialist about sequence of treatments BEFORE commencing a type of treatment. Should there be recurrence or metastasis later, you may qualify for more drugs on the PBS or admission to Cancer Trials. This might avoid the 'Crushing a Walnut with a Sledgehammer' effect.

 

 

3 hours ago, Nev Black said:

I believe the Cancer Council have accommodation in Toowoomba and Brisbane where country people can stay during treatment. Take you from accommodation to your treatment centre and return you each day. That way you could return home for the weekends.

Thank you.

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Pumpkin

I haven't used a forum before, so I'm not sure if you can reply under an individual persons' post.   It is a radical prostectomy.  I think the reason the surgeon gave for surgery was that if we use radiation first, then the insides harden like cement so this make it difficult if surgery is required in the future.  The non-specific spots have shown up in the Pet scan, but not showing as abnormalities on the CT scan, so they haven't been confirmed as Mets yet.  A worried wife has just jumped to that conclusion!

 

Thank you all for your responses I greatly appreciate it.

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Rozi

Hi again... I ticked that I wanted an email if you replied.... I am also new to blogs... I don't really like them and find them confusing... but I try......us wives are like that.... if your wife uses Facebook tell her to come and join me at https://www.facebook.com/groups/404323909995645/ and she'll pick up some info..... that group has a lot of files (I copied one to you earlier) that help understand :) That's true about the rad vs surgery but you need to speak to ALL the specialists before you decide.... the urologist, the medical oncologist and a radiation oncologist and ask all the questions you can think of... then YOU decide what to do...… they all have their areas of expertise and all think they know best.... good luck

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stevecavill

My only question would be, if I have metastases to bone, so the cancer had already spread, what is the point of the radical prostatectomy?  You will suffer all the (often severe, and permanent ) side effects of the RP, with little benefit as the cancer is advanced and incurable. 

 

Have you had a consult with radiation oncologist yet?  I would be asking their opinion. 

 

I had a similar diagnosis.  Gleason 9, three visible bone Mets to spine.  My urologist recommended AGAINST surgery.  I had ADT, radiation to prostate, and “spot” radiation (SBRT) Mets on spine.  All my treatment (except initial consult and biopsy with urologist) was at a public hospital in Sydney, and cost zero.  I still have the cancer, and always will, but treatment is able to manage it.

 

re pelvic radiation, it makes you tired, over time.  I was able to stop at hospital on my daily commute, as hospital was on way to work.  I caught the train, but would have been unconcerned about driving.  You do have to have a very full bladder, so a two hour drive could be problematic. 

 

What was the PET scan?  If possible get a PSMA PET, they are very sensitive and very specific.  

 

Don’t let the urologist push you into a quick decision.  Urologists are surgeons, so it’s predictable they will recommend surgery 😄

 

Steve 

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Rozi

Steve

 

I couldn't agree more.....

 

Cheers

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DarrylB

Hi Pumpkin

I am very sorry to hear about your condition, but in the nicest of ways it seems as though you are still "Drunk on the diagnosis" and that is the worst time of having prostate cancer to make life changing decisions.

My story is in this forum and many other forums all over the world. I was diagnosed with prostate cancer in 2010 and have suffered the consequences of making hasty decisions whilst "Drunk on the diagnosis". http://forums.jimjimjimjim.com/index.php?/topic/1367-my-story-darryl-baillie/

Currently, I have advanced cancer and a plethora of complications to nurse through what is left of my life. From my disaster I have been able to act as a prostate cancer patient advocate and help "newbies" through understanding their disease and most of the treatment outcomes.

I don't know all the issues you face from the scant postings but I am fully qualified to say SLOW DOWN. It is extremely important to make sober decisions and from my experience Specialists don't care about you once they have emptied your wallet. I am concerned that not only do the Doctors want to saddle you with the nasty complications of surgery and add all of the complications with radiation? Did they mention chemo yet??

Also, I believe it is extremely important to get a second opinion, you will likely find the second opinion wildly different to the first opinion.

In answer to your original post I have attached a document with the questions I should have asked but didn't. It was put together by myself, other patients and a Psychologist.  Also attached is a copy of what I have called "Prostate cancer the ugly truth" If you are being conned into robotic surgery you may need to read this document.

Bert Vortsman is a Urologist in USA. He grew up in New Zealand, became a Dr specialised in Urology, moved to Florida, opened up a clinic etc etc.

His point of difference is "HE CARES" and you will sadly find that Australian Doctors don't care!!

His website is https://urologyweb.com/is-robotic-prostate-cancer-surgery-bad-health-advice/

There is a multitude of interesting articles to read to fully understand about your newly acquired condition.

If you wish to contact me privately feel free.

In the meantime all the best and I hope I have helped in some way.

 

Questions smaller mar 17.doc The Ugly Truth Rev6.doc

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Charles (Chuck) Maack

I see it important that you determine with your health insurer, whom you remark said “prostate” is covered, what specifically is covered for treatment of prostate cancer. 

Are androgen (testosterone) deprivation (cutting off testosterone production) therapy medications (aka ADT) covered?

Are the medications Lucrin, bicalutamide, abiraterone acetate, enzalutamide, and docetaxel/Taxotere covered? (Lucrin and bicalutamide are the basic ADT medications.

With known metastases a protocol of Lucrin, bicalutamide, and abiraterone acetate has been found to hold prostate cancer cell growth and proliferation (dividing/multiplying) in check.  Abiraterone shuts down testosterone production from the three sources testicular, adrenal glands, and the which cancer cells can produce within themselves.  Yet, when prescribed in ADT, Lucrin is still considered necessary in this protocol.

Lucrin, bicalutamide, and chemotherapy with docetaxel/Taxotere is another protocol for men with known metastases, but the former protocol with abiraterone acetate rather than chemo medication docetaxel has been found less toxic and as effective in overall survival as going the chemotherapy route. 

Enzalutamide is yet another ADT medication considered much stronger/effective in blocking testosterone access to the multitude of androgen receptors on cancer cells than bicalutamide and could be considered if the abiraterone protocol showed failure.

The importance as far as health care coverage is that abiraterone (aka Zytiga) or enzalutamide (aka Xtandi) are very expensive medications that would financially doom anyone without such coverage.

If your health care covers surgical removal of the prostate gland, adjacent lymph nodes, and seminal vesicles (whereas you have remarked it does not cover radiation), then surgical removal may be preferred over the cost you are aware it may cost you for radiation as well as time away from home.  With known metastases spread elsewhere, either surgical removal or radiation are only "debulking" the amount of cancer to deal with rather than curing the cancer.  Surgical removal – more often with robot assisted laparoscopic radical prostatectomy (RaLRP) – usually means returning home the next day.  If covered by your health insurer, as well as if ADT medications identified are covered by your health insurer, the ADT protocol of Lucrin, bicalutamide, and abiraterone acetate could be your follow-on therapy to hopefully manage the metastasized cancer cells.

As I remarked earlier, if the otherwise planned radiation is to the prostatic bed (the prostate gland and its periphery which would include adjacent lymph nodes and the entry area to the seminal vesicles, this is no difference the surgical removal of these same organs since the radiation has no effect on the metastasized cancer cells.

I am a proponent of including the 5Alpha Reductase (5AR) inhibitor dutasteride/Avodart in any ADT protocol, but I suspect most physicians prescribing ADT have not done their own due diligence in recognizing the importance of this medication in ADT.

I also recommend you ask your physician to check your Prolactin level, since a level of 5 or higher means your cancer cells are being aided in activity.  If 5 or higher, then the medication cabergoline at one 0.25mg tablet every Monday, Wednesday, and Friday can reduce that level and remove that threat to cancer cell growth.

Hope this doesn’t confuse you but is important to further research and recognize the importance of considering all of the above.  One would hope that if you printed this out, your treating physician would take time to read it.

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Charles (Chuck) Maack

The more I think about you, Pumpkin, the more I realize that before any physician begins any treatment you should first get an appointment with a Medical Oncologist, or be referred to a Medical Oncologist.  Since you have known metastases located elsewhere than the prostatic bed, a Medical Oncologist is the primary physician to regulate the appropriate treatment for men so diagnosed.  That could still mean a recommendation for surgical removal of the prostate gland, adjacent lymph nodes, and seminal vesicles to debulk the amount of cancer to deal with, or a recommendation for radiation for the same reason - though you are also concerned regarding the cost of radiation that your health insurance does not cover.  The Medical Oncologist, when made aware just what your health insurance will cover can take that into consideration as to subsequent recommended treatment.  If he/she considers debulking the amount of cancer that remains in the prostatic bed, he/she could work with you and your insurance coverage for the best and most appropriate treatment and direct that treatment.  A urologist, if that is your current physician considering the direction of your treatment, is not as knowledgeable in the treatment of metastasized prostate cancer, nor is a radiation oncologist; thus the reason your next move now should be an appointment with a Medical Oncologist and hopefully others following these exchanges can recommend good ones close to where you live.  Do not be pressed to surgical removal nor radiation until a Medical Oncologist considers either appropriate - neither will have an effect on the cancer cells that have metastasized and that's where the Medical Oncologist will determine the best treatment options to deal with that metastasized prostate cancer.  Please, Pumpkin, consider first getting an appointment, or referred by you current physician if not a Medical Oncologist, with a Medical Oncologist!

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DarrylB

Hi Pumpkin

i agree with Chuck.... Please see an Oncologist first... Urologists are not cancer experts.

 

all the best

DarrylB

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Geoff J

Hi Pumpkin all that I can say is just take a step backwards and slow down. Your cancer is not going to kill you next week or next month. I  can give you some information on the difference in private verses public for all your treatments and what will surprise you is that you will most likely be seen by the same doctor even across different hospitals. I live near Toowoomba and have had some of my treatment as a public patient and some covered by work cover and those treatments are treated similarly to private. Recently I was advised by a medical oncologist that I needed  to have radiation treatment to 3 mets on my spine that showed some growth when compared to previous scans. When I arrived at the radiation clinic the first thing that I wanted to know was how much is this going to cost me. No one wanted to tell me so, I put my foot down and insisted on being told what was planned as far as treatment and what would it cost. The first run around was to be told that I would need to have another bone scan of the spine and a new CT scan as well.  I asked why  these were needed and was informed that the previous scans were to "blurry" to be used. My question then was HOW was it good enough to say that I needed radiation and yet to "Blurry" to use. Simple answer which I found later is that they are paid by Medicare different amounts dependant on the different services that they provide. Total cost as a private patient (without private health cover but as I dealt with some doctors when I was in receipt of work cover I chose to continue seeing the same ones) for 5 treatments was around $12,000 and after Medicare refund it should come back to around $1500 out of pocket. Same treatment as a public patient cost around $ 11,000 and after Medicare  about $500 out of pocket. Treatment by the same medical professionals in the same hospital but we have to remember that these doctors are doing this to make a profit not necessarily because they love there job. After the run around that I received I decided to get a second opinion. Made an appointment to see Radio-Oncologist in Brisbane and in his opinion not required at this stage. This all took place around six months ago and after having an MRI last week it has been decided to have 3 mets zapped when it is convenient for me (Radio-Oncologists words not mine).

I think that what we are all saying is slow down and gather all the facts that you can before you proceed.

 

Hope that helps Geoff.

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Pumpkin

So I’m the wife, I should have indicated, sorry. I don’t know anything about cancer and it is so scary and overwhelming that you just go by what the Urologist tells you. The one my husband saw has a good reputation in a private Bne hospital.  

 

It may be a silly question, but if it is metastatic then why isn’t chemo therapy used first up as a systemic treatment to eradicate the cancer in the prostate and the seeds chemically and avoid surgery altogether.  This doesn’t seem to be done, but out of ignorance I was wondering why. 

 

So, in hindsight I am seeing that a urologist is a surgeon, thus Is bias towards surgery.  A radiation oncologist specialises in radiation, which is different to chemo.  And a medical oncologist treats using chemo?  Would a medical oncologist Have a broader view than the rad onc and Urol?

 

So who prescribes the hormone therapy?

 

My husband didn’t want to read anything or know any information other than what the urologist told him. 2 days out from surgery I can see how you rush into making rash decisions out of fear. If it was me and my body, I need to know everything and probably would have tried to get a second opinion.  Even if you pushed things out by a couple of months the seeds are already out so yes the horse has bolted, so it would seem that you have got time for 2nd opinions. 

 

So, the 2 spots aren’t confirmed to be Mets yet, he said wait for psa reading after surgery to confirm or not. But he already has him earmarked for radio therapy in Dec.  I am fairly certain that our ins doesn’t cover radiotherapy. Can this be done publicly in Brisbane and is there one of those specialists who work at the Wesley and a public hospital as well?  The other option is Toowoomba for the radio therapy.  

 

I am concerned about spending all in the kitty now on treatment that can be done publicly, then not having anything to draw on if there are treatments down the track that are not subsidised. I see one treatment costing $40k for one round and multiple treatments are required.

 

Thank you

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Pumpkin

Also, my husband’s mother and 2 of his sisters had breath cancer so it is highly likely he has the BRCA mutation. I’m not sure what forum topic would have information for men with this. I did see something about parp treatment in the uk. 

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Charles (Chuck) Maack

Dear Pumpkin (the name does relate better to a woman than a man, lol)

 

I am addressing each of your concerns (I didn't address your remarks about your husband's mother and sisters breast cancer, though they are prerequisites to men being diagnosed with prostate cancer.

 

So I’m the wife, I should have indicated, sorry. I don’t know anything about cancer and it is so scary and overwhelming that you just go by what the Urologist tells you. The one my husband saw has a good reputation in a private Bne hospital.  

A patient should NEVER merely follow the doctor’s orders. Too often those orders are not appropriate for the patient’s status.  This is why forums such as this exist – to try to lead patients in the appropriate direction to personal research and study to determine why the physician is recommending (or too often demanding) a specific treatment rather than explaining the options of treatment available depending on that status.  I am so proud of caregivers like yourself who actually “care” about their loved on to seek answers to the so many questions that come up with the diagnosis of any cancer.  Yet, as much as we might help you with at least basic understanding, it is in vain if the spouse has his head in the sand and is unwilling to listen to you and what you are learning.  I hope you accompany your husband to every physician appointment and speak out to have “your” concerns addressed. 

It may be a silly question, but if it is metastatic then why isn’t chemo therapy used first up as a systemic treatment to eradicate the cancer in the prostate and the seeds chemically and avoid surgery altogether.  This doesn’t seem to be done, but out of ignorance I was wondering why. 

Chemotherapy is toxic medication that has an effect on healthy as well as cancerous tissues; it should not be administered to a patient who does not definitely require it.  There are so many pre-chemotherapy medications available to rein in and manage cancer that should first be administered.

So, in hindsight I am seeing that a urologist is a surgeon, thus Is bias towards surgery.  A radiation oncologist specialises in radiation, which is different to chemo.  And a medical oncologist treats using chemo?  Would a medical oncologist Have a broader view than the rad onc and Urol?

You have it basically correct: As noted in an online check, “urologist is a physician who specializes in diseases of the urinary tract and the male reproductive system. Patients may be referred to a urologist if their physician suspects they may need treatment for a condition relating to bladder, urethra, ureters, kidneys, and adrenal glands” and of course, the prostate gland.  The urologist is also a surgeon for those conditions and, as you note, may be more prone to recommending surgical removal of the cancer without referring the patient to learn more about the alternative of radiation to the prostate gland and its periphery.  More recently, the urologist has delved into the realm of the Medical Oncologist by administering medications for recurring prostate cancer.  This is reasonably of concern since with recurring cancer we are moving out of the training, experience, and expertise of the urologist and into the training, experience, and expertise of the Medical Oncologist whose specialty is the recognition of appropriate medications to treat recurring or advanced cancer. As you also note, the Radiation Oncologist’s specialty is the administering of radiation, thus may be more prone to recommending radiation without referring the patient to a urologist for surgical removal of the prostate gland. Often, when it appears the patient’s prostate cancer may have already metastasized (moved to organs outside the prostate gland), the recommendation to the patient is to arrange an appointment with a Medical Oncologist who can oversee his subsequent treatment, which, in addition to medications, could be referral to a urologist or radiation oncologist with the Medical Oncologist working with the physician to whom referred.

 

So who prescribes the hormone therapy?

As noted above, it should be a Medical Oncologist, but Urologists have taken on that responsibility.

 

My husband didn’t want to read anything or know any information other than what the urologist told him. 2 days out from surgery I can see how you rush into making rash decisions out of fear. If it was me and my body, I need to know everything and probably would have tried to get a second opinion.  Even if you pushed things out by a couple of months the seeds are already out so yes the horse has bolted, so it would seem that you have got time for 2nd opinions. 

And you are correct in your thinking; too bad your husband isn’t following suit. 

So, the 2 spots aren’t confirmed to be Mets yet, he said wait for psa reading after surgery to confirm or not. But he already has him earmarked for radio therapy in Dec.  I am fairly certain that our ins doesn’t cover radiotherapy. Can this be done publicly in Brisbane and is there one of those specialists who work at the Wesley and a public hospital as well?  The other option is Toowoomba for the radio therapy.

So, apparently the urologist isn’t certain he removed all the cancer.  If the pathology of the removed gland, adjacent lymph nodes, and seminal vesicles indicate cancer may have spread beyond the margins of the gland or into these other organs, then salvage radiation can be reasonable; BUT, if there is a possibility that metastasis has occurred beyond those organs, then salvage radiation will have not effect on any cancer cells that have migrated well beyond those organs and it may be time to get a Medical Oncologist on board. 

 

I am concerned about spending all in the kitty now on treatment that can be done publicly, then not having anything to draw on if there are treatments down the track that are not subsidised. I see one treatment costing $40k for one round and multiple treatments are required.

Being aware that your husband’s health insurance does not cover radiation, there is little wonder you are concerned about the expense of treatment options not covered.  As I noted, if metastasis is confirmed, your husband should first visit with a Medical Oncologist. Many of the medications prescribed in Androgen Deprivation Therapy (ADT) aka testosterone reduction can also be expensive, so it would be a good idea to get together with your husband’s health insurer to make certain precisely what is covered as well as copays that may be required. 

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Geoff J

Hi Pumpkin

I have been told that Toowoomba base hospital has a couple of very capable oncologists and that if treatment is required that is not available at the base hospital then patients go to St Andrews. St Andrews has a very large and well appointed Chemo treatment room and radiation is available as well. I have used the  chemo treatment room but not the radiation. St Andrews also has robotic surgery equipment and I know someone very well that had his prostate removed there and he is very happy with his treatment. He is a patient at the base hospital and sees his oncologist there and was only sent to St Andrews for the surgery and then transferred back to the base. He had no out of pocket expenses and he has no private health cover. I am currently seeing an oncologist at St Andrews and would feel mostly positive about my treatment. Hope that helps and keep up the research you cant have too much information.

 

 

Geoff.

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Geoff J

Sorry Pumpkin I forgot to add that if you want to talk just ring or if in person I am only half an hour from Toowoomba and I am sure we could find a convenient place to meet.

 

Geoff.

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stevecavill
On 8/18/2019 at 2:59 AM, Pumpkin said:

Hi Pumpkin,

just a couple of specific answers:

 

It may be a silly question, but if it is metastatic then why isn’t chemo therapy used first up as a systemic treatment to eradicate the cancer in the prostate and the seeds chemically and avoid surgery altogether.  This doesn’t seem to be done, but out of ignorance I was wondering why. 

Recently, chemotherapy has become accepted standard treatment along with ADT (hormone treatment) for initial treatment of metastatic disease.  This was the outcome of recent drug trials called STAMPEDE and CHAARTED.  But as Chuck said, chemotherapy is quite toxic so the patient general health is an important consideration before starting chemotherapy.

 

I am fairly certain that our ins doesn’t cover radiotherapy. Can this be done publicly in Brisbane and is there one of those specialists who work at the Wesley and a public hospital as well?  The other option is Toowoomba for the radio therapy.  

I did all my radiation treatment, which was 20 daily doses to my prostate and follow up high dose targeted radiation called SBRT to my spine in a public hospital in Sydney (Royal North Shore).  This cost me nothing.  I also did chemotherapy at the same hospital, for nothing.  I would be surprised if the major public hospitals near Brisbane can't do the treatment.

Hope that helps, Steve

 

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Pumpkin

Thank you again for your help everyone.

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