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  2. Agenda Friday 23 August 2019: Fourth Friday - NOT the last Friday - in each month. Carers: issues facing carers and resources available to carers. Jennifer Daddow from Carers Victoria will speak about issues facing carers and resources available to carers. While Jennifer is from Victoria, every state has a similar support organisation Roundtable Anyone who has a new story, an update on their journey, or questions is welcome to contribute here. You must dial in - we do NOT dial you. Landline - Anywhere in Australia - 25 cents 1300 289 804 (landline call from anywhere in Australia) (cost 25 cents) When asked, enter the Access Code 44 48 67 38# (no spaces needed) You will be asked your name when entering the conference. Mobile to that number - Anywhere - Your phone plan cost Some mobile plans may charge more for 1300 numbers. Best check your plan, or use one of the local numbers below. Mobile local - Anywhere - Your phone plan cost City Local Number Canberra 02 6210 0851 Sydney 02 9696 0774 Hobart 03 6218 0647 Melbourne 03 8687 0635 Brisbane 07 3811 0988 Gold Coast 07 5560 0956 Adelaide 08 8220 0836 Darwin 08 8989 0817 Perth 08 9460 0829 When asked, enter the Access Code 44 48 67 38# (no spaces needed) You will be asked your name when entering the conference. Phone numbers and code are only in emails. Problem? Contact Jim Time 9:30am - 11:00am Eastern Standard Time (Queensland) The formal phone-in meeting ends after 90 minutes. The lines are kept open for up to an hour after that for members to informally chat. Daylight savings times Brisbane 9:30am Sydney, Melbourne, Hobart: 10:30am Adelaide, 10:00am Perth 7:30am Winter times Brisbane 9:30am Sydney, Melbourne, Hobart 9:30am Adelaide 9:00am Perth 7:30am Daylight saving ends first Sunday in April Daylight saving starts first Sunday in October Apologies From. Late starters Maybe you haven't had access to the agenda or you have late breaking news you would like to share. Tell the chairman here at the beginning of the meeting that you would like to speak, and he will fit you in - probably later, perhaps right now if that suits. Special expert guest speakers ... Roundtable - new stories, updates, questions Any man who wishes is welcome to contribute here. Formal end The Chair will declare the formal part of the teleconference closed at his discretion, perhaps around 11am. The teleconference lines will be kept open until at least 11:30 for anyone who wishes to continue discussions, update his health, or just chat. Informal chat Any topic you like - topics we didn't reach, something discussed earlier you wish to comment on, an update on your health, how your new boat is going, moaning about the weather, anything that you wish to say. Disclaimer This Community does not give medical advice. No members are authorised to give medical advice. Ask your doctor if you hear anything here that you think may be related to your treatment. Mobile phone warning The costs of mobile calls are nothing to do with the Advanced Prostate Cancer Support Group or with PCFA. They are between you and your phone provider (Optus, Telstra, Virgin, Vodafone, etc). If you dial one of the capital city numbers given above from a mobile phone, the cost to you will be the cost on your mobile phone plan. If your plan gives you free, or low cost local calls, and you are in one of these cities, it should be free, or a local call. If your plan gives you free, or local cost national calls that should work too. Be sure - call your provider, give the number you might be calling, and check the cost for you to call that number. Speaking time We want many voices to be heard. If you are a member listed to speak below, the chair will probably expect you to take no more than about 5 minutes on presentation so there is plenty of time for others to respond. Special Guest Speakers are invited to speak for 10-15 minutes, then field questions. Guidelines No noise House - radio, TV, computer, pets, other phones, conversation Yourself - mute button, or mouthpiece away from mouth Phone - call waiting off (#43#), Mute button or hang up to leave the room. No mute button? ##4 to mute, ##5 to unmute. Cordless phone - don't carry, put on folded handkerchief to limit reverberation Other calls - Please do NOT use call waiting or another line on the same phone to take another call - members around Australia are left listening to your 'hold' music until you return. Speaker phone Please do NOT use a speaker phone, unless you are very good at keeping it Mute, and at lifting and using the hand piece when you wish to join in the conversation. Mobile phone You will need enough charge for the length of the call, or take the call with your charger plugged in. Speaking Speak clearly into mouthpiece in ordinary voice. Say who you are when signing in, and each time you speak. Listen for the gavel. The Chair may need to interrupt. It's a meeting of 20 people, not a simple phone conversation. If you are not one of the two people in the particular conversation at the time, keep your mute button down and let others contribute. Help the secretary by later emailing details for the minutes. Restarting You may hang up and sign in again as many times as necessary. Sometimes we may have to restart the meeting - dial in again. With everyone calling at once you may need to try more than once. Future phone-in support group meetings Fourth Friday of each month, except: January (One week late for Australia Day, making 2 meetings in February) and December (One week early for Christmas) Phone-in support group meeting dates 2019 23 August 27 September 25 October 22 November 20 December (one week early for Christmas) Changes or questions If you wish to update us about any changes in your health or treatment, or have a question you would like answered or discussed, or you would like to talk about joining a teleconference group, let us know. Then we can put it high on the agenda so it doesn't get lost - just reply to this email, or use Contact Jim on JimJimJimJim.com. Face-to-a-name meetings South East Queensland and Northern NSW Saturday, 2 November 2019 11:00am for lunch at noon Victoria Saturday, 10 August 2019 11:00am for lunch at noon Sydney Need a volunteer to organise a central venue: Contact Jim or Nev 11:00am for lunch at noon This message has been sent to you because you are a member of the Australian Advanced Prostate Cancer Support Group. Visit JimJimJimJim.com and click on Contact Jim if this is a problem.
  3. The machines are basically the same. There are different tracers which are not always available everywhere. PSMA PET using a Gallium tracer is the most recent and probably the best right now, but it's not covered by medicare. So typically about $700. Some public hospitals may cover it as part of their research program because it is very new. I think the big difference is in the skill of the radiologist who plans the test and interprets the results. Steve
  4. 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.
  5. 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.
  6. Barree

    Pre-Treatment Concerns

    Hi Chuck, What a great article. As someone who has experienced CVD - possibly because insufficient thought was given to my situation prior to a new treatment being prescribed, I am very conscious of the need to repeatedly draw this matter to the attention of other patients. Side effects and compatibility with existing medications is something every patient needs to discuss with their medico each and every time their medication is added to or changed. My own experience is:- if I don’t initiate the discussion regarding these matters - they are not always discussed. Cheers, Barree
  7. Charles (Chuck) Maack

    Pre-Treatment Concerns

    Pre-Treatment Concerns Before any treatment is considered, it is extremely important the physician determine from the patient any other health issues that patient may be experiencing or has experienced other than that for which current treatment is being planned. A variety of blood and other tests should be considered to hopefully alert the physician to any health issues the patient may be experiencing but unaware. Prescribing drugs or treatment without due diligence could have harmful results for the patient. This is important and the patient, as well, should be certain to provide the physician a listing of any other health issues as well as medications prescribed for those other health issues. The following are just a meager sampling of what the physician and patient should be concerned as regards treatment for prostate cancer. The side effects of many drugs are so vast that both physicians and patients should take the important time to research, study, and be aware of any medications prescribed. Important to the patient is being made aware so not surprised when side effects are experienced. Lupron or any agonist/antagonist: Before testosterone reducing drugs (Androgen Deprivation Therapy/ADT) are prescribed/administered, it is important to be aware if the patient has or is experiencing any cardiovascular issues since if so, the physician prescribing the medication should first contact and discuss the patient’s issues with the patient’s Cardiologist. These medications can cause a variety of side effects and the patient should be forewarned so not surprised when occurring. Most side effects can be remedied. Casodex/bicalutamide, Eulexin/flutamide, Nilandron/nilutamide: These drugs can cause breast enlargement, so the patient should be forewarned and consider radiation to the breast area or prescribing Arimidex (anastrozole) or Aromasin (exemestane) prior to proceeding to prevent this issue. The patient should be made aware that, like the agonists and antagonist mentioned above, these medications can also cause hot flashes, sexual disfunction, and overtime loss of bone density. Since these medications can be toxic to the liver, it is important the physician is made aware if any liver issues are present. Avodart/dutasteride or Proscar/finasteride: Before the 5Alpha Reductase (5AR) inhibitor dutasteride/Avodart or finasteride/Proscar is prescribed it is important to be aware if the patient has or is experiencing any liver issues since, if so, these drugs should not be prescribed. Like antiandrogens, these medications can cause decreased libido, erectile dysfunction, and decreased ejaculate. The effects are usually mild and can improve over time. Zytiga/abiraterone: how many are aware of the percentage of deaths that have occurred with the administration of Zytiga/abiraterone to patients with already present cardiovascular disease (CVD)? How many even pre-determine if the patient is experiencing CVD? How many patients even reveal or know that they have CVD? Yet, the prescribing of Zytiga is common-place when metastasized castrate-resistant prostate cancer (mCRPC) is evident and recent studies have only now brought attention to this important concern. (“Compared with the 15.8% crude 6-month post-abiraterone mortality rate for those with no CVD, the rate was higher for each of the pre-existing CVD categories the researchers assessed: ischemic heart disease (21.4%), stroke (22.1%), congestive heart failure (23.4%), atrial fibrillation (24.4%), and acute myocardial infarction (25.6%). https://tinyurl.com/y2b7cwc5 - https://tinyurl.com/y5vqof75 Xtandi/enzalutamide: this antiandrogen recently prescribed often has a large variety of side effects. In looking up this medication, side effects can include back pain, joint aches, musculoskeletal pain. Diarrhea. Hot flashes. Peripheral edema (swelling in your hand, arms, legs, or feet). Low white blood cell count. Headache. Upper respiratory tract infection. Dizziness. Thus, important the patient is made aware of what he may experience. Sipuleucel-T/Provenge: If central venous catheter use can be avoided, perhaps complications such as line infections can be decreased. In addition, patients at high risk for thromboembolic events or with multiple risk factors for cerebrovascular or myocardial events may not be ideal candidates for Sipuleucel-T. Blood Thinners: If prescribed a blood thinner such as warfarin, Eliquis, or similar, it is important to avoid adding aspirin or Vitamin E or certain herbal supplements that also are blood thinning products. If surgery is scheduled, your surgeon should be made aware of these products so the appropriate time to stop their use is determined prior to that surgery. So much important information every patient should be aware, but more often are not.
  8. 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, “A 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.
  9. This is a good question, but I had my first PsMa PET Ga68 PET / CT scan in 2016, which was able to see soft tissue Pca mets in lymph nodes only 2mm in dia and maybe 2 years before anything else could. Not only that, the location of mets was then possible, co-ordinates were then available for beam radiation using Calypso SBRT so this made this RT much better aimed than before, so beam size could be reduced to a minimum for less collateral damage to surrounding healthy tissues. I found out about all this when I was first patient in Oz to have salvation RT to my PG at Epworth in Melbourne where I had had primary treatment of standard EBRT in Canberra Hospital in 2010 which did much less to kill my PG cells that was expected by doctors. I recall first place in Oz to get Calypso was Epworth, and first place to get PsMa Ga68 scans was Bridge Rd imaging located near Epworth. If the full truth were to be known about my Pca with perfect scans that have not yet been developed, I bet my Pca in PG and the first mets might have been seen clearly for first time very many years before 2009 when I was diagnosed with a real bad Gleason 9 with a low Psa 6 which was obviously diagnosed too late, costing maybe $200,000 to treat so far from Medicare and my pocket. Had PsMa Ga8 scans as they were in 2016 been around in 2008, I may have shown massively clear picture of Pca in PG. But maybe would not have spotted any mets. So If I'd had a perfectly successful RP in 2008, or maybe 2005, my Psa would have gone very low, and stayed low, to indicate I had got the darn thing in time, and there would not have been any need for ADT or RT so I'd have recovered well without incontinence or ED. But any mets that could not have been seen in 2005 would have grown and prospered without ADT and Psa would have risen to tell everyone I was back at square 1. I don't know how many men and their doctors think they have got the RP done early enough, and without leaving a single cell of prostate tissue behind, which is always likely to become cancerous given enough time. So, just how perfect would you like the scans to be? What could ever see the first Pca cell to begin away from the PG? Is it possible that some Pca develops in many men with microscopic mets being seeded elsewhere, then being killed by our immune system, and then when the number of mets goes over a threshold the immune system cannot cope and the mets survive control by IS and these live on to kill a man despite the PG being removed early enough. Scans or blood tests may never be able to accurately see presence of any cancer when the level is extremely low. But if a man were able to have his PG removed at say 40, after he's produced all the children he wants, and probably well before any microscopic Pca has formed anywhere, and all well before say 65, then its highly likely he may have no future Pca problem so there would be no need to wish for a perfect scan which seems highly unlikely to ever be devised. Most blokes are horrified by the idea of having their PG removed because it seems to be extremely important for a bloke's continued sexuality and the happiness of himself and his partner. But I really don't know just how badly a man's sexuality is diminished by a perfect RP where all nerves were spared, bearing in mind, what goes on within the PG gives pleasure during sex. Would the generation of "love hormones" like oxytocin occur? these complex issues help us bond with partners. How many men or women under 40 would f agree that any relationship was possible without sex? Not many, IMHO. But if Pca is / was heavily present in all the bloke's relatives, then the earlier he gets the darn thing cut out, the better. Meanwhile, I have survived nearly 10 years since diagnosis with Psa 0.57 and No 6 PsMa Ga68 scan report says my bone met sites are healing up after the 4 x Lu177 shots between last Nov and May. And despite what docs said 8 weeks ago about the MRI and Xrays showed for a hip joint with 2 pea sized mets in femur and pelvis nearby hip joint, I have been now able to cycle again, no pains at all, and I didn't expect this. Today on Radio National I heard Professor Paul Davies give us a lecture on what cancer is. He thinks its DNA that evolved 3 billion years ago, well before the era of Oxygen being abundant in our atmosphere, which came about by photosynthesis in plant life evolution. The 3 billion year old DNA had other layers of control imposed upon it, and if those layers are disturbed, then uncontrolled cell growth occurs. He thought that a diet of low carbohydrates to minimize blood glucose PLUS sessions in hypobaric chamber in with O2 level could do a lot to control cancer growth. He said nothing of a cure, but a lot about how much of our DNA is able to mutate to avoid change in availability of cell nourishment or presence of chemo to kill cancer cells when they divide to form more new cancer cells. In other words, much cancer therapy makes the cancer mutate to beat anything doctors throw at it. I have no idea what he'd think about how I have had Aunty Lutetia conduct miniature atomic bombing of my Pca cells and thus no idea what sort of Worst Type Zombie Mutants the Lu177 have thus encouraged to develop to prevent any future Doctor's Potion being able to kill. But at least the Lu177 is targeted, so it gathers at tumor sites. If would be nice if chemo could be similarly targeted to make the doses given to us much lower, get gather at the tumour site in overwhelmingly large amounts to ensure the chemo worked, instead of giving us disappointing performance all too often, with lingering side effects. But what I did experience during last 2 months was to meet a single lady of 40, in my local café, an extremely unlikely event, ever, since most ppl are my age. I talked to her for hours. Turned out she believes she has healing powers and feels the presence of God, and Jesus, and I don't dispute this, although the theology invented around God so far really is all quite inadequate to describe what may be something far bigger than any of us or even Jesus. Anyway, she performed a healing prayer ceremony for my hip after I'd eventually admitted a few health bothers during our conversations. Possibly, healing may be induced by rare individuals where they merely consider the idea of the problem and request it be fixed. But I thought that if I ever cycled again it would be a miracle. Now 99% of ppl who proclaim they can heal are so often con merchants needing $$$$. But not this lady. I saw her again later, and she repeated a prayer, and there was no way I could be a fool to not accept such good will, bearing in mind most all other ladies I've met with view to marriage when I was under 50 turned out to have zero ideas on love for anything, let alone any desire to commit to anything or anyone, even to themselves. This lady was a visitor from Canada. I leave this open for you to all of you to chuckle about. But I am glad to have met enough good docs and nurses and in a timely manner to let me live this long, so I think I'm doing better than maybe 6 billion other ppl on Earth, and why I was given this opportunity is Miss Terrey. Patrick Turner.
  10. At our meeting this Friday we have a guest speaker from Carer's Victoria who will talk to us about the issues facing carers and services available. Although Carers Victoria provides services within Victoria, there are similar organisations in every state and territory that provide similar services. Please encourage your partner or carer to join in the teleconference this Friday at 9.30am to hear about issues facing carers and what sort of help is available. The meeting details will be emailed out as usual later in the week. What sort of issues would you like the speaker to cover? If we can provide her with a list in advance it will make better use of time, so reply below if you have any topics you would like her to cover.
  11. The public systems tends to have the latest machines from what I am told, but QScan also has new modern machines. The tracer is a different story - depends on the facilities for making it. RBWH make their own, but a lot of others use a different tracer. You probably need to ask the facility you are thinking of using what tracer they use, although I thing the result from the different tracers is pretty similar.
  12. You might want to consider a PSMA PET scan which is newer and gives a more detailed scan but is more expensive. I use one in Soutjport on the Gold Coast and I’m sure you’d find them in most capital cities
  13. I understand that medical imaging has it’s limitations, but are the machines that do these scans the same at every hospital in Brisbane or does any place have a later and greater machine able to provide better imaging?
  14. 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.
  15. 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
  16. Earlier
  17. Charles (Chuck) Maack

    Robotic Surgery Warning by FDA!!

    I found Darryl's referenced paper interesting in the history of surgical removal of the prostate relatively and reasonably explained. However, the article though describing all the pitfalls of surgical removal of the prostate, never summed up what alternative treatment is recommended, and why that alternative treatment. It always bothers me when reading everything wrong with something, but then the writer/author/complainer failing to follow-on with his/her recommended alternative and why that alternative is worth considering. Why list a volume of pitfalls, but not have an option to be considered? Worries us with “what now” then leaves us hanging! I sent a contact request asking that very question but no response to now. Charles (Chuck) Maack (ECaP) - Continuing Prostate Cancer Patient Since 1992, Advocate, Activist, Volunteer Mentor since 1996 to men diagnosed with Prostate Cancer and their Caregivers locally and on-line Worldwide. Email: maack1@cox.net Website: www.theprostateadvocate.com My Efforts: https://tinyurl.com/yd8qz2os
  18. Barree

    MORE LUTETIUM CLINICAL TRIALS ON THE WAY

    PRINCE trial combining Lu-177 PSMA-617 and immunotherapy Keytruda (pembroluzimab) now recruiting at Peter Mac in Melbourne for patients with metastatic Castration Resistant Prostate Cancer (mCRPC). Keytruda given 3 weekly up to 35 times and up to 4 cycles at 6-weekly intervals of 177Lu-PSMA treatments. Click this link to get full trial details: https://clinicaltrials.gov/ct2/show/NCT03658447 If you require any further information please email me or Contact Peter Mac direct (03) 8559 5000
  19. DarrylB

    Robotic Surgery Warning by FDA!!

    Hi All Thanks for the comments, Forums like this are excellent in not only giving information for ongoing treatment but reviewing current or past practices. I have stored/saved so many future treatment options from this website that I will likely need but as one contributor wrote he was waiting on immunotherapy to arrive in Aus... and so am I. I stand by by comment that my wife and I were lied to. We were promised that I would be back at work in two weeks... BUT!! and I would be cured once and for all!! and the list goes on and on... I was lead to all the robot manufacturers website links to absorb all the embellished perceived benefits. We were told that I would only need one night in hospital (in 2010)... I was told by the hospital prostate cancer nurse a couple of years ago that 3 nights is now standard and I certainly would agree with that. I was my surgeons 186th patient and I thought he was experienced enough - by what I researched at the time. I now understand 1000 is experienced enough and even then some surgeons never get out of the learning curve at all. I wont ramble as my story is on this forum for all to see. Some months into the 2.5 year ordeal of multiple corrective surgeries I contacted Dr Bert Vorstman in Florida. He had some good articles to copy and distribute and I asked if I could do that. He agreed and asked about my condition, he replied that my case was not uncommon in the US. To my surprise he turned out to be a Kiwi who was trained in NZ and later went over to the US to do more training and opened up his Clinic in Florida. Dr Vorstman publishes many papers on prostate cancer and his latest article gives the history of surgery and robotic surgery with all the references. He is very much a patient advocate and that is the point of difference. His latest website article is on https://urologyweb.com/is-robotic-prostate-cancer-surgery-bad-health-advice/ I think you would agree that to make your way forward it is good to know where you are coming from...... Wish all of you well... DarrylB
  20. Patrick Turner

    Robotic Surgery Warning by FDA!!

    The meaning of this is clear, surgery may or may not succeed to "get rid of your cancer" . It seems to me that very few men post here after having a successful open RP or a robotic RP and after finding their Psa went to zero and never ever rose again and they never needed follow up with EBRT, ADT, or a dismal battle with one potion after another for many years after, and, following the RP, their continence was OK and they had no ED and because they could keep their testosterone they had no bone density bothers, etc. I was 62 when diagnosed 2009, Gleason 9. low Psa 6, but Pca at PG was found to be in-operable after they opened me up, in preference to earlier idea of using robotic, which would have also failed had the doc tried to use it. Pca had probably already spread everywhere. My Pca probably began 4 years earlier, and I should have been given biopsy in 2005 not 2009, but Psa was only 3, and so stupid medical system is not required to act on Pca until Pas goes to 5. I'd had Psa tests for 10 years, and expected to get Pca, but threshold of 5 is too high. But even if my Pca had been caught earlier, when it was much less advanced, maybe not spread, surgery for RP is a risky thing because the distance from surgery to where cancer is in PG is very small, so it is very difficult for any surgeon to remove all cells containing PG DNA. If he removes all the cancer, but leaves a small amount of cells behind with prostate DNA, they may become cancerous over time. I met one man here who could see the risk, and had PG and bladder removed, and urethra cut short as possible well below PG, then had ureters joined and a stoma created so he'd wear plastic bag for rest of his life. No more getting up 5 times a night, and he didn't mind becoming instantly and permanently impotent. But he kept his balls and testosterone. It was an expensive op, but that's how he thought he could avoid the risk of normal treatment for Pca. He talked to me once about this, but never wanted to talk about it again. I'd guess this man paid a pile of dough for that op. He never said how much. About 50,000 Australians wear a bag for liquids or solids or both. But there was still a risk for this man that his Pca had spread before that massive operation. This was well before any PsMa scan could detect spread earlier than any CT scan, so he took a huge risk because he still could have had Pca spread. Meanwhile, my Psa after having completed 4 x Lu177 shots in May is still going down, now 0.57, and well down from the high of 50 after 5 shots of Docetaxel failed last year. Seems like the pile of dough I spent on Lu177 was worth it. Life is a risk. Blokes get PTSD from life events, even without taking a bullet. I was told after the failed open RP that they'd give me ADT for 2 years, and EBRT after 6 months and that definitely would work. I looked up about it online, and thought the doc who told me that was A grade B artist. And for me, he was, because the ADT and EBRT merely tickled my cancer pink, and I found that docs at St Vincents thought the "ADT + EBRT" had a 90% fail rate for men with Gleason 9. So I soon got used to BS, but lived quite a cheerful life despite the false hope expressed by some docs along the way; my life was still a lot better than about 5 billion other ppl struggling and battling away on little blue Planet Earth. Lu177 is now being used earlier in progress of Pca, and it would have been ideal for me in 2009. Its not approved. But its available where chemo fails. I did not dither about with chemo for long, I thought it would fail, so did my oncologist, and sure enough it did, and he had no hesitation to refer me to Theranostics Australia where I could buy the Lu77 for $40,000. But Pca will probably still kill me, because it tends to bounce right back like a weed in the garden that keeps coming back, despite trying to get rid of it. It snowed over last 3 miserably cold days here in Canberra but today skies are clear, and no wind, 14C and its another nice day of life above ground rather than below it. I'm going to prune my wisteria vine outside this afternoon, and am looking forward to Spring. I might just live long enough for immune therapy to become more effective than it is, or for targeted chemo, in the same way lu177 is targeted. "Always look on the bright side" Patrick Turner.
  21. ardee

    Robotic Surgery Warning by FDA!!

    I endorse Chuck's comments. The takeaway point for me is that "overall survival, recurrence, and disease-free survival" compared to open RP may not have been adequately studied; not whether robotic RP is approved and reliable. I recall one study published last year that was inconclusive. All surgery comes with risk .... there is no guaranty and plenty of examples of men who have had bad results from open surgery. Blaming the robotic procedure may be the wrong straw man. O&U, rd
  22. Charles (Chuck) Maack

    Robotic Surgery Warning by FDA!!

    DarrylB: One should be cautious when addressing information to patients subject to prostate cancer. You flatly stated "I was clearly given the understanding the robot was FDA approved!! and it wasn't !!! - you posted false information. The reference you provide provides a recent FDA concern more specifically for women "for treatment or prevention of cancers that primarily (breast) or exclusively (cervical) cancer." It’s primary further concern is that physicians who will be using robotic surgery for any cancer are thoroughly trained and experienced before beginning any robotic procedure, and patients are encouraged to question the physician as to his experience, knowledge, expertise, number of procedures already performed, and make certain this physician is qualified. These are concerns regularly addressed on these forums when we learn of a patient being recommended for robotic surgery. From: “Robot-Assisted Prostate Cancer Surgery on the Rise:” “The first robotic surgical system for use in urologic surgery was approved by the US Food and Drug Administration (FDA) in 2000, and the system was applied to prostatectomy procedures by 2001.” https://www.cancernetwork.com/prostate-cancer/robot-assisted-prostate-cancer-surgery-rise From “Updates in Urologic Robot Assisted Surgery” last year: “The current US Food and Drug Administration (FDA)-approved da Vinci™ platform is an SS system that uses the Si™ system” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6305212/ From . 2007 Jun;8(3):197-210. Evolution of robotic surgery in the treatment of localized prostate cancer. “Presently, 7 years after its approval by the FDA, many hospitals have established for robotic-assisted radical prostatectomy programs.” https://www.ncbi.nlm.nih.gov/pubmed/17721745
  23. Bob

    Robotic Surgery Warning by FDA!!

    I underwent a radical robotic prostatectomy in 2018 for the removal of my prostate and surrounding tissue. The prior biopsy revealed that I had a high chance of having metastatic cancer, which is the case, that aside the robotic procedure was fine, my wallet on the other hand...... I wonder does Australia follow the US FDA completely or do we make our own analysis.
  24. Paul

    Robotic Surgery Warning by FDA!!

    I had robotic surgery and the procedure was a radical prostatectomy in 2011 It was a complete success The link above focuses mainly on women’s health So I’m wondering Is robotic surgery approved for prostate cancer and not yet for other procedures???
  25. My story is a dismal one, I should have been cancer free and was told absolute lies by my Urologist, yes I made a wrong decision whilst "drunk on the diagnosis"! We who have been conned into robotic surgery may want to know the FDA's (U.S Food and Drug Administration) latest warning 28 Feb 2019. I was clearly given the understanding the robot was FDA approved!! and it wasn't !!! https://www.fda.gov/medical-devices/safety-communications/caution-when-using-robotically-assisted-surgical-devices-womens-health-including-mastectomy-and?fbclid=IwAR32f8FyR1MrQyTaeGA7Ua2BRUiXWS_WFbibk91aYSjZGWo3H5bfmkorQ9c GOOD READING and I am interested in what readers think.. all the best DarrylB
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