Hi guys! I was just wondering if I can have your opinion on an incremental increase in PSA. My dad was diagnosed in June 2015 with a PSA of 257 and a single lymph node met. He had chemo immediately and has been on hormone therapy ever since.
His PSA has been on a downward move since he started Lupron with the exception of one upward bump in July 2017 after my mom had a stroke and he was under a tremendous amount of stress. His PSA increased from .16 to .22 at that time and then continued to move downward thereafter.
His last PSA in July 2018 was .05. On Monday my dad took a fall.. it wasn't related to his cancer, he just got tangled up in my sister's hitch on her truck while he was loading something in the back and couldn't regain his balance on the uneven terrain. Anyhow, he's pretty beat up and even walking is a struggle.
Moving on to his PSA, he went and got it tested on Friday (so 5 days after his fall) and it had increased from .05 to .08.
Should we be concerned? We haven't heard from his oncologist and we don't have an appointment with him until January since he decided my dad was doing so well and didn't need to see him but every six months. Any upward movement gives me anxiety! Eager to hear what you guys have to say!
Thank you!
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Lynsi13
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Thank you for your reply! And I know that it is not a significant increase, but it’s hard to not get excited over any upward movement in this journey! Yes, the test was taken at the same lab. And the only distinct difference between this test and his last was the fall he took earlier this week. I don’t know if it has any impact whatsoever on PSA, but I know that it has added to his stress level!
He’s doing great! My PSA at diagnosis was 227 in 2015. ADT and early chemo took it to undetectable. It slowly rose to 1.8, at which point we added Zytiga plus prednisone about a year ago. PSA has been undetectable again since then.
My point is that his current PSA is great. And if it rises, there are new drugs that can knock it down again.
Please try and relax - he’s had a tremendous response. Have a great day!🌈
Thank you for your encouragement!! And you’re right about the testing! My dad is seen by a Cleveland Clinic doctor and “undetectable” is established at .04... he was .01 away from it in July and I was praying that he would achieve that “undetectable” label this time! I suppose I will just have to be happy with knowing that he is undetectable by another standard! 😊 either way, I spent the day with him and mom and he seems in pretty good spirits!
Oops, meant to reply to your earlier post, Bill! But thank you also for trying to keep the post positive. I agree that the cancer is enough negativity in itself! Although I didn’t take the post personally... I actually just assumed that English was a second language to him and tried to read between the lines. (Looks like it was removed anyhow!) 😊 Take care and thank you again for taking the time to encourage me!
first the average male without cancer is from 0-4.0 your dad doesn't have a 1.0 so why is everyone worried your below the male average so have a drink and check your psa in 6 months and see where it is at that time
Lynsi, my PSA was 415 when I was dx 19 months ago. We hit it hard with 6 rounds of chemo. With continuous ADT, it's been fluctuating from 0.1 to 0.2 back to 0.1. My Onc said, by the time my PSA significantly rises, there will be a new drug to act as an inhibitor. And we're not talking zytiga, something new from the horizon. I am not worry or thinking about it. I am enjoying life daily. I would suggest the same for you and your family. Keep us posted. Best wishes
Picking up on your references to stress. Dr Myers told me that chronic stress is a volume control for cancer. He mandated I tale an 8 week course on meditation, that doning it on my on wasn’t enough. Also, added therapy and meds
"Pressure is what comes from outside; stress is what we do to ourselves." How is your mom doing? Has she recovered well from the stroke? That would help your father a lot. Also is he getting physical therapy for his fall injuries? The more outside difficulties we remove the easier it is to maintain a positive attitude. Let your father know that his brothers here are pushing for him all the way and we're proud of you for the support you give him.
If only I had a Psa below 0.5 again! Mine seems to be hovering at about 25,
and I have had ADT since 2010, after diagnosis 2009 with a Gleason 9, 9 positive biopsy samples, agressive cells, young man's type of Pca and at age 62.
I was spectacularly fit at age 62. I could easily cycle 150km in a day's outing. Psa went from 6 at diagnosis to nadir ( lowest level ) of 0.08 at 2 years after starting ADT, and 18 months after the 70 Grey of EBRT X-rays to PG.
Then I had a pause in ADT, and Psa went to 8.0 in 6 months, and although I had good suppression of Pca with ADT, it was not killed off by the EBRT or by the ADT. The trouble with ADT is that its like sweeping the dirt under carpet; the dirt remains, just hidden, and in the case of Pca, the cells may seem to be asleep, in a kind of cancer coma, but they ARE very much alive, make no mistake. I had to re-start ADT, and I still have monthly injections.
After about 4 years, the chemical castration ADT totally exterminated all sexual ability, something that did not worry me because few females I should have met who I might have related to had already had a menopause, some at 40 and most were "through with sex". But castration does not stop a man's mind from desiring some female presence in his life. I am not sure any woman feels a similar desire when she goes over 50.
Over time, the comatose Pca cells will slowly find a way to grow more prolifically by making their own testosterone, and also by making more testosterone receptors so that the cancer cells can filter out a small amount of testosterone in blood, and this is made by adrenal glands that are not shut down by ADT, and may generate 3% of normal levels. The ordinary ADT injects of Lupron, Lucrin, Eligard etc merely shut down the manufacture of testosterone in testicles, ( aka "balls" )
The ADT effect is is similar to where a man has his testicles removed.
And before castration drugs were invented, men had balls removed - much cheaper than the repeated drug injections.
From very early editions of the The Lancet, a magazine read by doctors, and readable online, you can read the history of treatment of many diseases and by 1880 it became well known that eunuchs in the Chinese and Persian Empire palaces never ever had Pca. They did have other troubles, low bone density, physical weakness, but had male brains, so they became the empire civil servants and diplomats to achieve acceptable details within trade deals and alliances - without having temper tantrums or putting a sword through visiting officials from another empire. The eunuchs were found to be a safe way of having a man to manage the harem which every big-shot ruler of old days would have.
Eunuchs were sometimes known to sing very well; their voice is unique.
Some boys in Italy after Renaissance were sold to opera companies to become "castratti". These usually had some natural ability with music, and the lack of testosterone gave their voices a range of 4 octaves, powered by male lungs. Especially wonderful operas were written for them. Farrinelli was one of the most famous, and film of his life was made in 1990s, and the sound track is just fabulous.
So life without balls before 1880 could be very much better than just being one of the peasants who could hardly sing at all. A father of a boy did well if he sold his talented boy off, and the boy usually did better than boys who remained "uncut" peasants. Life in a palace making music was better than a life in a field doing hard labour, or being forced to join an army, where life was often very short.
So by observation, doctors learnt that having no working balls made a man far less prone to prostate troubles of one sort or another which often led to a horrible death. It wasn't long before the standard treatment for having difficulties urinating involved ball removal, and soon afterwards, most older men could pee like a younger man again. But only rich men could get any attention from anyone slightly "medical".
But following having balls removed, a fairly simple operation not needing too much whisky for anesthetic, the urinating problem eased off, maybe for many years, but then symptoms came on again and maybe the man began to pee blood, or he had terrible trouble with aches in his bones and maybe other organs failed because of the Pca had became active after adapting to very low testosterone levels, and it spread, like nearly all cancers do. Vastly more is now known about cancer and its spread than was known up maybe 1940.
But there is still NO CURE for Pca.
Testosterone and many other hormones were slowly identified and their function very slowly discovered. We still have a lot more to learn, IMHO.
But ordinary ADT injections only shut down manufacture of T in testicles, balls. Some T is made by adrenal glands, maybe 3% of normal T level. The Pca makes more receptors while a bit comatose, so it slowly grows, and after a Psa nadir of say 0.05 it is 0.1, in following years it may be 0.15, 0.25, 0.5, 1.3, 2.8 at end of each year, so the doubling time reduces, and it relentlessly rises, and so next step is to use other drugs to interfere with adrenal gland and block the action of testosterone but this blocking action often can only keep Psa suppressed for a year, although some get 6 years. Meanwhile, the DNA of the original prostate gland tumour or DNA in metastacies will mutate to defeat whatever chemical is used to supress tumour growth I have see some men have a remarakbly long time for Psa supression, and thus have Pca remain a low total mass so they have a fairly good life, and a life that is much longer than if they did nothing, and hoped for a miracle. So the progress of Pca can be slowed, but as most cancers grow, regardless of the speed of growth, with cell divisions and new generations, mutations occur so that any given chemical for ADT or chemo action will yield some results on some Pca cells, but not on all of them.
I had 7.5 years where ADT + Cosadex + Zytiga kept Psa < 10.0.
A time was reached where nothing else could suppress my Psa, so docs had to give something to kill my Pca cells, and I might hope a lower Psa would indicate lots of good killing going on.
This year I had 5 x chemo shots with Docetaxel over 15 weeks and Psa went from 12 to
36, 26, 27, 42, 45, 36 and docs decided chemo was not working, and not likely to in future so I switched to Lu177 "theranostic" systemic radiation
that is chemically targeted to Pca cells wherever they lurk. This can be Googled to find out more. The PsMa Ga68 PET + CT scans indicated I had countless mets in soft tissues and bones after the chemo. Between the last chemo shot and first Lu177, Psa went from 45 to 25, and 5 weeks later it was 25, and presently I have no idea what it is before my next Lu177 infusion on 4 January 2019, in about 10 days time.
Blood tests will soon tell me, but Psa might be rising right now, and this does not worry me.
It worries NOBODY ELSE because although I very much like ladies, not one ever stayed long with me to have a family, so without a family, I found myself quite alone, so nobody else is worried about me much at all, only my doctors, who have not enjoyed seeing their best laid plans unable to halt the slow progress of my Pca.
That you love your father is a miracle because in so many familes, there is an absense of love where I might think there should be an abundance. But both my sisters had a poor relationship with our father who ws of a generation that was taught to ignore emotions, and use force to enforce good behaviours. I never ever heard him say the word "love", He was a Mr Hardman. But luckily I inherited the disposition of my mum, who I never saw lose her temper.
I lost a sister to Oa, at 60yo, and she'd had her only child, a daughter at 42, so the daughter had to cope with losing her mum at 17. I lost my father at 25, and despite his "short fuse" his death saddened me. My wife who stayed only 18 months had lost her dad at 15, and when I lost that wife who just tried to dissappear late one night I felt she'd died. Loss of who you love can be inevitable, beyond our control, and its where we learn that prayers don't help; no matter how fervently we wish, bad luck happens, and we have to keep going or we will perish sooner rather than later. I seemed to be a natural born coper; No matter what happened, I stayed operational, and I did not become a mental wreck, ie a casualty of life. I could have talked about it endlessly to everyone, and I tried a bit, but found it bored other ppl; I had to just cope. A voice said "Suck it up Bro".
In fact, many ppl end up with PTSD from life events and there is not much difference to them than to soldiers who have nightmares after time in Afghanistan, Iraq, or Vietnam and all wars before now. I've met weeping wives of younger men with rare cancers for which there was little treatment, and the deaths of these fellows was swift, and a terrible pain. While at a chemo ward one day, I met a fellow in next chair along, there with his wonderful loving young wife, so I tried to talk about hope as best I could. 2 weeks later, by chance, I met the wife who was with relations and friends at a cafe to arrange her husband's wake, and she came to talk to me, and was a mess of tears, but I said, in effect, "you are strong, beautiful because of this, so don't forget your man, but you should meet another who has lost his wife, and you will love again". We all deserve a chance to have love in our lives, no?
I hope she didn't go off the rails; I never even knew her name, but there were
10 ppl in her group, so she, and her son under 2yo will be fine, given time, because there is more goodwill in the world than bad will.
Unfortunately, dads and mums cannot be replaced, but then it does not seem natural that we would try, so there's good in remembering.
Today is Christmas Day, so, "Happy Christmas", and it matters not that you are a stranger. I never had a family I made myself, so I had many years to learn to appreciate being alone without suffering loneliness.
Its about 32C here, a warm sunny afternoon, and I am in a remarkably good "frame of mind" even though I am spending the whole day alone, and not missing anyone. My favourite radio station played Sassons Organ Concerto in C minor earlier this afternoon. On many days, classical music speaks to my being more than people do.
This morning I went for a little 78km bike ride to way across town, and stopped at two cafes, the second was a lunch stop. There were very nice people serving, and although I am riddled with cancer I managed very good average speed that had me feeling euphoric, and that indeed the world continues to bestow upon me much simple wonderment while Aunty Destiny permits me to live a bit longer.
Dear Aunty is a bit of a bitch of course, but she is the entity over which we have very little control.
Now there there might seem to be something crazy about some old man of 71 bicycling quickly and as far as he can, just like the younguns of 30, but at about 50 I thought I better live the life of a permanent practising athlete, lest my body rot to bits and have me appear to others as a fat horrid caricature of what I was once, and other ppl enjoy me in a better preserved version
I've cycled a total of about 240,000km since age 37, when I began because the social life with a cycling club was better than the nightlife ppl I met in bars.
I had a 12 year break from cycling but re-started on 2006, so 140,000km since then. I ran my own small business to live quite well.
Despite the sexlessness of my existence for last 15 years, and absense of a partner for 40 years, I see that I cannot be acceptably human if I didn't have a sense of humour or if I never saw any wonderment. Life does not need to be much more complex than that.
I no longer have to work, where my pleasure to please other ppl provided the propellant to keep going, even if my own life seemed empty.
Its possible my story has something that might explain myself, and the knowledge make you less anxious or worried, but remember that if anxiety and worry did not occur, maybe nothing else would either; stress provokes questions, and our own answers can be wrong, so I can't be like a hermit, so I must accept some stress, and it guides me to know me, and others, and to decide on action, after weighing the options, and its all I can do, because I like being alive.
The other thing to remember is that my journey with cancer will always be a different experience to that of others because the same treatment given to 3 men may give 3 different results.
I love your post Patrick. It is of course different to my experience as we are as you say all basically very different how we experience cancer, but the loneliness, losing my wife of 35 years a couple of years ago and all my childhood family one by one over the last few years (Brca 2 gene fault didn't help), the work..pleasing others as a cause to exist...all strikes a chord. I have recurrent PSA cancer. Still rolling though and I am only 61 (first diagnosed at 52) so totally understand. Yet to really hit the chemicals full-time as had surgery (robotic) the rads with 6 mnths ADT at first BCR...just about to hit second BCR. Onco is just saying enjoy before you get to 2020! I loved long pushbike rides as a boy but haven't done it seriously since I was about 25 and i doubt my knees would take it now..I could damn give it a go though!
Time is the Great Dismantler, and to live happily at over 50 many things cannot be done. I was just lucky to fit in the doing of about 240,000 km on a pushbike and not get flattened by the motor traffic, or break a bone. But I also spent 30 years as a builder with most as contractor doing house extensions, so I worked my bones to the limit. But I have known men who did twice all that, and look like being able to cycle to 85, and they ain't got Pca, so one is getting a bride from Thailand, just a young chic of maybe 50,
but this kind of extended youth is just not in my genes, and there ain't nuttin I can do about it. We are given a set of DNA, then born, and then what happens over next 100years is often down to luck and our choices, and abilities to make good ones, and our emotional robustness because we need that one a lot to bring up a family. Its a wonder more ppl don't have as much PTSD after 70 years alive as we see, but in fact many do, so they need our consideration to bring them to a calm place, if possible.
Thanks Patrick, I do intend to try an stay alive. I have a grave feeling it is just about to get a lot tougher for me, but you know, I have always been up for a challenge. Stay well yourself man, if not, be certain to ride well - into the sun.
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