January 2015
Hi Sandy
Speak up to your doctors about pain and speak loudly. There are plenty of options for treating pain and keeping you pain free.
Sailor
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August 2014
G'day RBX4
Don't worry too much if you don't get on the robotic surgery. My understanding is that the outcomes are no different to ordinary prostatectomy. It is sixteen years since I was diagnosed, I still have the cancer and they are running out of options for me, but what the hell, I am enjoying life! Currently ticking Uluru off the bucket list.
Cheers
Sailor
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July 2014
Hi Eva 15
I was diagnosed sixteen years ago at age 52 with a very aggressive prostate cancer (Gleason 5 + 4 = 9) and up until now have had life with a very good quality. I have travelled extensively and until the last two years it hasn't had much effect on my lifestyle. A bit more planning ahead and dealing with side effects of ongoing hormone therapy. A Gleason 7 tumour usually has good outcomes, with a range of treatments available and therapies for if the first treatment doesn't work. It is not good that he has been diagnosed so young.
Us men are funny in the different way we handle such situations. Some want to be very private and not discuss things, others the opposite. I don't know what your father is like, but which ever way just let him know that your are concerned and that you love him. Don't overwhelm him as with prostate cancer you are in for the long haul and he will need you their in the future, such as when he is having treatment. Don't be afraid to get in touch with the cancer helpline 13 11 20, you don't have to have cancer to use their services and also see if there are ways you can support your Mum.
Take care
Sailor
I'm not afraid of storms, for I'm learning how to sail my ship. Louisa May Alcott
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July 2014
Hi Catnip
This is not unusual and quite a few people who have had cancer treatment experience the difficulties that you experience. It could be worth getting some help if it is hindering you getting back to work that you enjoyed. Try ringing the Cancer Helpline 13 11 20 and talking to a nurse counsellor about recommendation to deal with this sort of thing. Or you could talk to you GP about seeing a psychologist on Medicare. It is well worth it and it took me too long before I saw a psychologist.
Best wishes
Sailor
A ship is safe in harbor, but that is not what a ship is for. Anon
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June 2014
Hi everyone
It is quite a while since posted on this part of the site. It has been a bit of a traumatic journey over the last twelve months.
For those new to the site I have advanced metastatic prostate cancer first diagnosed sixteen years ago. So I am one of those who has lived through a lot of treatment and with cancer for a long time.
The latest scans show that the cancer is still mainly in the abdomen where it i still strangling the left ureter, the tube that drains from the kidney to the bladder, but now there are also some metastases in the rib cage. So far no pain which is a good thing. Most of what I have to endure is side effects of treatment, after late side effects. Twelve months ago I was on a clinical trial of a new drug, but that only worked for about four months. Since then I have been on three different drugs, none of which has worked, so all pain for no gain, whilst the cancer relentlessly grows and spreads. Because the cancer is strangling the left ureter, I now have a tube in my left side that goes directly into the kidney - a nephrostomy. The drainage bag for that is on my left leg. Surgery twelve months ago left me with no bladder control so I have "condom drainage" and bag on my right leg. So I am even footed, if not even handed. Currently I am on hospital as the kidney decide to bleed and I was passing a lot of blood through the nephrostomy. Could be an infection of a side effect of the current drug, which is not working anyway. Unfortunately the drug also make you throw up and messes round with temperature so it could be either.
There is still some hope, a new drug will hopeful be approved in July and all the experts say it is what I need.
Cheers
Sailor
But to every sailor comes time to drop anchor
Haul in the sails and make the lines fast
You deep-water dreamer your journey is over
You’re safe in the harbour at last. Eric Bogle, Safe in the Harbour
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June 2014
Hi Tashie
Short term memory loss is a side effect of a lot of cancer treatment. I first got it sixteen years ago from hormone therapy. I've now learned to manage it. I just write things down. Wherever I am likely to be I have a note pad and write down things as I think of them and write up a "to do" list of things that I have to attend to, then tick them of as they get done. I gave up using a paper diary and went to one on the computer and it links to my 'phone and I set it up to give me a reminder of any appointments or things that have to be done on time. I even use it to remind me to take medications at the prescribed time.
I don't think that herbs or potions help.
We are stuck with these things and just have to kern to manage them.
Cheers
Sailor
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February 2014
Hi there Gong Traveller
I had a Gleason 9 cancer and still have it fifteen years later. Gleason seven is considered, from my understanding, to be at the upper end of the probability of a good outcome. Make sure you get hold of the "Localised prostate cancer a guide for men and their families". If you urologist doesn;t have a copy, Google it and odwn load it. That will explain the options and the liklehood of you ending up with side effects. I had no side effects from my initial treatment, it was only following salvage treatment for a recurrence four years down the track that these occurred. Don;t be afraid to explore the options for different types of treatment. Don't be afraid to seek a second opinion. Ring the Helpine 13 11 20 and ask to talk with people from cancer connect who have had the different types of treatment available. Whatever you do, don't rush. Prostate cancer is slow growing and you can afford to take your time deciding what to do. Also ask about penile rehabilitation following treatment.\ if you have some initial ED.
Cheers
Sailor
An incorrectly identified mark is a hazard, not an aid, to navigation. Alton B. Moody
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December 2013
Hi There all you good people,
It's about time that I gave people an update on where I am at present.
After three months of chemotherapy my blood markers were going up rather than down but my blood counts were taking a nosedive. A CT scan showed that the main mass on my left side hadn't changed in size but now I have a new mass this time on the right side. It explains that the lower leg lymphodema is now in both legs not just the left. So the decision was to take me off the cytotoxic chemotherapy and put me on one of these new targeted drugs that costs an average persons salary. Fortunately it is now on the PBS so it isn't costing me anything. I am extremely grateful that I live in Australia and that we have the PBS and not like some other countries where the rich can afford therapy but the average person can't.
I don't know whether it is working but after a week on it I am beginning to feel human again. Just shows how easy it is to overlook the side effects of the drugs we are on.
Still have all the plastic plumbing an that is a real negative. I would like to suggest that the CEO's of the companies that make such equipment and their chief designer wear it for a week, then maybe, they would realise that we are not all sitting in wheelchairs, but some of us are active and want to lead a normal life.
So sailor keeps on sailing.
Cheers
Sailor
For the truth is that I already know as much about my fate as I need to know. The day will come when I will die. So the only matter of consequence before me is what I will do with my allotted time. I can remain on shore, paralyzed with fear, or I can raise my sails and dip and soar in the breeze. Richard Bode First You Have to Row a Little Boat
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November 2013
Hi Melinda
Can I support what Samex has said. I understand that something like 60% of cancer patients will suffer some sort of depression. For most it will not be what is called clinical depression, but sadness, moodiness, flying off the handle. Talking to a psychologist is really really helpful, but most of us wait to long to do it. I know I did. Part of it is about making transitions and they are uncomfortable times. So see you GP and ask about seeing a psychologist through the medicare scheme.
However, remember, life will never be the same again. You have been through a traumatic experience and you will live with that. I remember in a TV show some years ago, the cricketer Simon O'Donnell, twenty years afar his experience of lymphoma, saying that having cancer in your thoughts everyday is part of the life sentence of cancer. WE all live with it. You are not alone.
Cheers
Sailor
He that will not sail till all dangers are over must never put to sea. Thomas Fuller .
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November 2013
Hi John
For the first part prostate cancer is usually fairly slow growing, with typically the time it takes for the cancer to double in size being in terms of months and years. Do you have some PSA results over time? If you google PSA doubling time there are several doubling time calculators the you can use and the PSA doubling time is a good indicator of the cancer doubling time.
For the second part, you are all on a steep learning curve. This is another reason to get in touch with a up port group, there are people there who know an awful lot about prostate cancer, from their own and others experience. In this game knowledge is power.
No, I didn't have surgery as the urologist who I saw fifteen years ago recommended radiotherapy rather than surgery, as it may have spread beyond the prostate. In hindsight it was a very good recommendation as I had no side effects until it recurred four years later.
Cheers
Sailor
She said, 'I'm home on shore leave,'
though in truth we were at sea
Procul Harum - A Whiter Shade of Pale
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