Doctors say stupid things : Doctors say...

12 days ago

The Most agonizing thing I ever had happen to me was to get a biopsy where the urologist poked a needle firing gun up my rectum to obtain PG tissue samples. It was a Saturday morning, and he'd promised I'd have an anesthetic, but I was given none, and after about 3 shots it began to feel like he was using a nail gun to fasten my rectum to my spine. He wanted 12 samples, but I said NO after 9, and would have got him to taste a knuckle breakfast if he went any further. That's when he backed off, and he said "9 will do".

All 9 samples turned out to be positive. I recovered OK, but getting somewhere, or anywhere to get such small procedures done at the hospital at that time was very difficult because there were few theatres available 24/7 and loads of patients in a queue, so to treat me in a timely fashion, he broke some rules.

I later met a couple of men who had had biopsies through rectum and they'd spent 3 weeks very sick due to infection, so I was very lucky.

Another doc said that "you are not trying to have a family so you don't need to have a working Rodger".

I was 61 then, very fit, able to cycle 150km in a day, keep it up for hours if need be, but no, I was not interested in sex to make kids, but I knew once Rodger was dismissed by ADT, shielas who wanted "closeness" would try the next man along for closeness, ie, for temporary pussy destruction to brighten up their dull lives.

But most doctors since 2008-9 have been really good, and have more understanding. By the time I was 60, virtually all the extremely few ladies I ever met who were not married were mentally deranged, sexually dysfunctional, allergic to blokes, bitter, angry about the broken marriage and they had paused from men for previous 10 years because of hormonal changes.

I settled for riding bicycles instead of trying to ride a shiela :-).

Patrick Turner.

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Patrick-Turner

in reply to boseley

12 days ago

Hi Anna,

Yes, I remember Howard visiting Macquarie Park Uni where the first outlet for Lu177 was based. He had come over from New Zealand.

I recall he had pain in both hips and a high Psa and seemed doubtful about getting any benefit from Lu177.

I'm very sad to hear Howard has not got much benefit from treatments, and now appears to be having palliative care.

I think I just happened to be lucky because I went on to have the full 4 shots of Lu177 by mid May, and Psa went from 25 before I began Lu177 to 0.41 now, and all the pains I had in my bones has gone and the last PsMa Ga68 scan report shows significant healing of bone lesions so the docs say I have had a very good result. But they do not know how long this will last before the trend to a lower Psa stops, and trend reverses to upward and more treatment is required.

I recall that in 2015, Theranostics Australia was granted licence to supply Lu177 without full approval in Australia. The Aust law permits ppl to buy treatments not yet fully approved where all other standard treatments have failed, ie, all forms of hormone manipulation with ADT, Cosadex, Zytiga, Xtandi, then chemo. TA knew all about German innovations with Lu177 and

so were able to offer a benefit to 70% of men who qualified to get it - if their PsMa scans indicated they would likely get a benefit.

In 2016, an official Australian trial of Lu177 was first done with 31 end stage patients at Peter Mac in Melbourne, and a few are still alive. One man had 7 infusions. There is continuing trials going on in Aust for Lu177 combined with other things, and Ac225 is being increasingly used because it works on bone mets earlier than Lu177. But this nuclide treatment is not yet widely available and not here in my city Canberra, the National Capitol of 440,000 ppl.

I am still able to travel, and ride a bicycle, and live independently in my own house, but I know that could change any time soon.

I hope Howard has some good pain management. The best thing I heard about was sub-cutaneous pellets to give slow release of Fentannyl in small amounts. It is thought to be many times more effective than morphine, but is addictive, something that may not matter. When one of my sisters died from ovarian cancer in 2005 at 60yo, nothing worked and mets stopped her eating anything, so she went to a palliative care hospice overlooking Sydney Harbour, a nice place, they gave her sufficient morphine and she was happy enough on the day before she died, walking around chatting with me and others in the gardens there. But at night her pain increased, and they gave her button to press that increased her morphine intake via an IV drip, and as pain increased she pressed the button more and more, then lost consciousness her heart failed at 6am. She was alone, but didn't mind, her time had come. She had one 17yo daughter who did not seem to cope very well with her mother's illness. But who ever does? I lost my dad when he was 60 and I was 25yo to melanoma and I remember being told at work he was going, and by the time I got there he'd just gone, and my mum and I had a big long cry. Mum took longer than I did to recover, and I was able to move back home to live with her for 6 months until she gained strength to be fully independent. She lived on to 98, and her group of friends much increased so that by 80, there were 80 Christmas cards, but then they all began to pass away so there were few friends left when she departed.

Its nice to hear from you, I cannot be dry eyed about this, and I guess all you can do is care, and wait for what will be a relief, and then try to rebuild a life for yourself. I don't fully know how to do this because I never had a wife who wanted to stay long, so I'll depart and be very alone, and just be grateful for being with whoever is around at my end. I sure cannot live forever. I have met women who have lost a man, and most get over it.

You'll probably dampen the shoulders of quite a few ppl, but that's fine, let that happen, its natural. I hope your strength surfaces.

My Best Regards,

Patrick Turner.

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boseley

in reply to Patrick-Turner

11 days ago

Thanks Patrick,

Sorry this is so short, but very tired as going up to the hospital about three times a day. We have three adult children and one grandchild. We are doing all we can to get Howard back in his own home, but I that seems to be a process that can not be rushed. The kids are being very supportive even though they don't live locally.

I do hope that you have a strong network of friends, all you need are a few really good friends. I am lucky in that respect, but on saying that I feel Howard has been ripped off, he always kept himself fit, didn't smoke etc. Just doesn't seem fair, but life isn't always fair. My father was also 60 when he died of cancer, so I know the grief my own children feel....very difficult.

I am however very happy that Lu177 worked for you and gave you such good results. I hope one day it will be frontline treatment, followed by Actinium. Still a lot of research to be done. Thankfully Lu is now available in NZ for men this side of the ditch.

Regards and best wishes

Anna

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Patrick-Turner

in reply to boseley

11 days ago

Hi Anna,

I think many men and their families feel "ripped off" when there is a diagnosis of a fatal cancer despite the practice of living a healthy life, and having regular yearly health checks including tests for presence of cancer, such as the Psa test. I had Psa tests yearly, and expected to get the disease.

We all begin lives where cancer is the least of our concerns, something only old ppl get, and we won't get it because we are all going to live forever, or to 105, which ever comes first, with good health.

I gave up smoking at 34, when I was up to about 1/2 a packet a day, and a GF said "Patrick, you need to give up smoking because you smell when we go to bed together..." and I replied, "Veronica, tomorrow I give up completely". Then she said "Ah, you men, you make promises you cannot keep..."

Well, tomorrow came, and I did give up, cold turkey, and never smoked a cigarette again. Veronica better enjoyed her 10 months with me, and might have made a nice wife, I hoped she would, but like all those I dated and who lived awhile with me, they could not resist the urge to do more travel OS, and "try out" other men.

So her love turned into a distracting panic as commitment threatened, and off she fled. I stayed put, I had customers to please in my business, and a house loan to repay, so no OS trips for me. So even when we are young, we often just don't get what we want, or when we do, it does not last.

Men need to get their PG removed when Psa creeps up to about 2.5. When treatment is arranged, it might then be 3.0, and an RP usually then might prevent the spread that happens when the RP is a bit late, and with my Psa at just over 5.0 in 2009, I had advanced Pca, inoperable, and spread to many places that could not be seen in scans.

I don't have many close friends I could rely upon for any support when I need palliative care, and no family, so I'll cope as a loner when the time comes, just like I have with everything else for 90% of my adult life. But here there is some palliative support for ppl wanting to die at home surrounded by family, or maybe without family, because I saw how the man next door died over about 3 months after an 18mth battle with lung cancer.

An unmarked white van used to arrive daily and a nurse lady would attend him, probably to give increasing pain relief with opioids.

I have seen other friends die in hospices, because they had nobody to care for them at home, similar to me, and when my time comes, I'll go with a smile, no use being angry about anything.

But right now I am back on my bicycle, and feeling better each day, and I have a follow up appointment with a radiation doc at hospital tomorrow that involves about 40km cycle ride, and I really like Dr Klieven, a beautiful lady doctor, but this time there is nothing to arrange for me, and maybe she just gives me a few good words of advice.

I'm glad Lu177 has come to NZ. Theranostics Australia was looking to establish a branch in NZ, but maybe there are other medical companies who might have done it. Many "baby-boomers" like myself are getting Pca so business is booming.

Try to look after your own health, and if there's any sign of something not right, get it treated early, make sure you have preventative scans.

My sister who died from Oa had doctors tell her for a year she had bad indigestion but it was advanced Oa. Then after the hysterectomy she was told by surgeon "we got 80% of it, and chemo will get the other 20%" and nothing could have been further from the truth. AFAIK, there is no theranostic treatment for women's cancers yet, but there should be, and no doubt research is continuing. I first heard about theranostics when our ABC TV had article about a 72yo lady who had multiple mets in her liver, but docs at Peter Mac in Melbourne had a theranostic fix for her and her scans looked like mine, same sort of thing, and docs were confident to give her many more years of life.

But nearly all treatments for cancers are temporary fixes, like applying weed killers or mowing or using a hoe to stop the weeds, which tend to grow back again.

Must research is being done to get our immune systems to recognise our cancers and deal with them, but cancer is clever to hide from the IS and be seen as healthy cells. Immune therapy, IT, is somewhat very unpredictable and unreliable so far, but a few ppl have had excellent response with Provenge, and this works best when a person's altered white cells keep passing on the alteration to future generations of white cells so the cancer killing continues, and last longer than for the action by treated white cells for only one life cycle of such cells.

I might last long enough to get a benefit from IT, but at present it has immense cost in US.

So take care Anna, seek support from others who have a similar loss. Enjoy your family, and make the best of life you have left. What else can anyone do? I don't have all the answers, but was lucky to cope well so far,

and maybe lucky I have not had to cope with a partner's problem. I would never have minded that if I had had a partner who led to two of us enjoying love for the many years.

Being my age at 72, and while posting here, and while visiting hospitals as often as I do, I am well reminded that life is fragile, many have a worse problem than mine, so I have to try to be cheerful with all I meet.

Its a very nice spring day here of 18C but was -3C last night.

We could do with some rain.

Patrick Turner.

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Princeps

in reply to ronronHU

12 days ago

I was diagnosed 2 years ago with a 4.2 PSA and a Gleason of 7 (3+4). I resisted the RP and radiation ( wary of ALL associated side effects. I had genetic testing done (PROLARIS) which told me I had a 7% chance metastasis over the next 10 years. Good odd; in my favor.

Armed with that info I went back to same urologist who scoffed at it and still said surgery was his advice, he was a surgeon; and in hindsight, a vet pompous ass.

I have seen 9 urologists until I found one who agreed to monitor me every 3 months with an MRI and PSA test for

“ active surveillance”.

2 years later (2019) ; the PSA and MRI have remained stable.

😉😁👍

I suppose I may be fortunate, however I belong to 2 support groups aside from this website and have encountered too many men who are permantly scarred ( both mentally and physically) from trusting their doctor)

I am 63 ( and in excellent health and physical shape) and wager I need to keep this boat afloat for anther 25 years max; I made a calculated decision and threw the dice...

My quality of life; my decision.

Most doctors do not seem to understand that.

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ronronHU

in reply to Princeps

12 days ago

Frank,

I moved to Thailand 14 years ago, shortly after my RP. I have a nice condo on the beach just north of Pattaya in Banglamung. Medical care facilities are very good if you can afford to go to private hospitals which are still far less expensive than in America. Actually the government hospitals are not bad if you don't mind spending a half day there. All Thais are treated for only 30 baht (one US dollar)...foreigners pay much more, but still a bargain. HIV drugs for example which I understand are quite expensive in most countries, are only 30 baht for a 90 day supply for Thais...I think foreigners pay about $100. For anything major I go back to the States since Medicare does a good job of paying there; however, pays nothing out of the country. I can buy most pharmaceuticals here...many without a prescription.

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billyboy3

12 days ago

I have to take exception to this posting Darryl. There are good and poor doctors as is in any field. Some are just ignorant, some arrogant, some poorly brought up. That said, for those of us thankful enough to still be alive, it is ONLY because of the very hard work and dedication of many in the science and medical field!!!!!!!!

Maybe we need to do a second post of appreciation and good stories. The doc who started with me and has since passed away himself with cancer, gave his entire life to helping those with cancer, nonstop for 40 years!!!!! I am only here today because of his extra, over the top work on my behalf, and did not make a single penny more for the many hours he spent with me and others inflicted with PC. Nicholas Bruchowski was a great man in this field. He lost his wife to cancer and it became his nonstop mission to do everything he could in his live to help tho had this lethal enemy enter into their lives.

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Bebby1

in reply to Bebby1

12 days ago

I have been a practicing registered nurse for over thirty years, and could write a book about things I have heard Drs say.

It beggars belief at times, but I’m old enough and experienced enough to call them out !!!

Inappropriate, cruel, dishonest, are just a few adjectives.

On that same note, I have witnessed the kindness of angels also .

This site does not discriminate

It is not unkind

It does not dash all hope

Yes, we need our medical specialist, but our souls need people who understand the pain and torment and worry, and who offer great advice for lots of side effects

When we leave that medical office, our diagnosis remains the same

Our anxieties don’t change

We need to share and care

And that’s why I’m here

I gain so much from every level here, and can then sit with my husband and say “ hey look at this “

Thank you all

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Bluebird11

12 days ago

I do have another one.. This was our introduction to PCa. It was traumatic. We went for a biopsy. Well known doc. We knew nothing. I really didn't know anyone with PCa. He did the biopsy, using a color doplar at the time. Seeing his recent high PSA and Alk Phos, he handed us a prescription for Lupron and Casodex. I asked kind of stupidly, will these be hard on his liver. He was washing his hands and said, we'll test him in about 3 weeks to check. He walked out of the room. He never said prostate cancer, nothing.

We were sitting in the waiting room to make an appt when the nurse who assisted us walked by. I stopped her and asked can you tell me about these drugs. Her response was these are chemical castration drugs. My husband turned white, we had to help him into a private room where he cried. That was our introduction into ADT. This was 2007, leading research and teaching center.

Though, through it ALL.. actually it helped us to get strong and make our own decisions. So, in a back handed way it was a gift for us to not depend on the medical system without our complete congruence. We are GRATEFUL.... we found very early as in life.. look for the silver lining.. it is there, we may not like it or want it.. but this is life.. and we trust it...

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Lulu700

in reply to Bluebird11

11 days ago

In the spring at our place in the desert we have mating rituals of the crows . Sometimes 10 of them flirting and playing in the thermals above . They chase each for days on end .. Once in a dark wood at 7800 ft near our cabin we were walking lulu and there in the darkest part of overgrowth there as a stump . On this stump the master f ceremonies giving his directive and all around him were 100 others listen to every word . It was amazing . Ravens are bigger ,travel in pairs and diamond shaped tail.. It’s difficult to tell sometimes .The Navajo believe that the crow is the messenger to the other side .. They are one of the most intelligent birds. Having their own language and facial recognition of good or bad humans .. We love the magpies in Colorado . Better paint job ..still basically a crow ... But only one Bluebird11 on HU .. Take care bird lover, we are also fans ..

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Bebby1

8 days ago

Hello to all

Any input on bad dreams

My husband quick history

Diagnosed Feb2018

Gleeson 10 adenocarcenoma

Stage 4

Extensive Mets

Heavy lymph involvement

Commenced cosudex

Soon after docetaxal

Was on zoladex third monthly

Recently changed to eliguard due to excerise program it promoted and helped with

Only two treatments Docetaxal as became neutropenic and hospitalised

many times

Resistant to cosudex within few months

Now on enzalutamide and xtiva injections monthly for bone

Bone pain managed with low dose Targin (opiate slow release) twice per day

On Effexor which has greatly reduced the hot flushes ( Aussie)

And....general outlook improved as that drug primary use is antidepressant

Long story short

Lately he has been having terrible dreams

No recall but wakes feeling terrible and feels like he is done something wrong

Looks tired

Worries about the severity of the dreaming

But pushes through daily

Goes in to work for three to four hours

( after that becomes foggy tired and of no use he says)

Any thoughts ??

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