I'm Sharon the wife writing about our experience with prostate cancer. I say "our" as, when you are married, it is an experience you both go through. Alfred was 66 in March 2014 and is still working. Back in 2009 Alfred had a bypass. As a result he had 6 monthly cardio check ups after that and still does through our local GP. One of the blood tests they did was a PSA test. Never an internal exam. He was averaging around 3 for his PSA for several years. He had an enlarged prostate for at least the past 10 years and was up numerous times during the night to go to the loo for years as well. The PSA then jumped but all we were told was "we'll keep an eye on it as it's a bit high". We didn't think to ask what the reading was. You know what it can be like - you just assume the Doctor knows if there might be a concern. Of course you look back and think "why didn't we ask what it was". It was 5.9!! It had almost doubled in 6 months. That was in the first half of last year, 2013. If we knew then what we know now we would have insisted that we be sent to see a Urologist. Then he had his cardio check up in about October and the usual blood work but they forgot to do a PSA this time. Then in about late November Alfred was seeing the Doctor about something and having a couple of blood tests done. I mentioned that a PSA hadn't been done this time so he added that to the blood test. It came back at 9.1. The Doctor gave us a referral to see the Urologist.
Bad timing. It was the week of Christmas and everyone had now closed for the holidays. To back track a little. Alfred had a colonoscopy in December for something totally unrelated and in the results it said "a large irregular malignant feeling prostate palpable on PR examination" so we already knew what to expect when we finally saw the Urologist in January. He had a biopsy in February and while waiting for the results to come back the Urologist wanted him to have CT scans and the full body scan done so he could see all the results to look at when we went next. All the scans were clear and the cancer had only just escaped the prostate. Gleason 4+5=9. We don't know what his official stage rating is. The cancer and the tumour were only on the left side. The right was clear. He recommended radiation and hormone therapy. He started off with a hormone pill, which name escapes me, for one month. 2 weeks into the medication he was to have his first injection of Zoladex 10.8 into the abdomen. The Urologist said he will have those for 3 years. Why radiation and hormone therapy rather than surgery? The Urologist felt that there was no point in having surgery as most likely he will then need radiation later and he felt it was the best choice of action for him. And because of the position of the tumour there was also concern about the bladder and outcomes if surgery was what we wanted to do.
We saw the Oncologist next at the Cancer Centre at the nearest hospital to where we live. A 2 hour drive there and a 2 hour drive back. We had a long appointment about treatment. Alfred had gold seed implanted on the 3rd of June, and the pre-radiation appointment on June 24th. On June 19th we saw our Urologist for a follow up appointment as to how Alfred was doing, and a scheduled PSA test result. His PSA had gone down to .013. At the pre-radiation treatment we saw the Doctor, a Nurse, and a Prostate Nurse who only deals with prostate cancer patients. He also had 3 tattooed dots put on his body and a ct scan and other things as pre-preparation for the radiation treatments. We left very well informed about what was going to happen and the side effects and other bits of information such as using unscented soap, taking cranberry tablets at night, staying hydrated etc, eat healthy, exercise etc. We went home with booklets, and leaflets and folders of information. And a cute yellow water bottle that was his to keep and to bring with him every treatment!!
Radiation starts in exactly 8 days - July 15th 2014. He will be having 39 treatments x 5 days a week. At the end of each week we will receive a sheet of paper to tell us at what time his appointments are for the following week. Once a week he will see the Doctor. Once a week he will see the Nurse. And the Prostate Nurse told us that even though she doesn't have scheduled appointments she tries to see everyone who is having treatment every week. We have been very well looked after already and Alfred hasn't even started the radiation sessions. Everything has been clearly explained.
Because of the distance we are to cover to drive there and home we will be staying in the City Monday to Friday and travelling home on weekends to check mail, mow and just sleep in our own bed!
And so our journey begins.
As of Friday the 5th September Alfred has finished 39 treatments of radiation. He is doing well. The course of action now is to continue with the Zoledex for another 2 and 1/2 years. He will be having 6 monthly PSA testing and a link up between the Oncology Department of the Cancer Centre where he was treated and us at our GP's conference room where we live. Otherwise we'd have to travel nearly 2 hours every 6 months for a check up. It went well with few dramas. The staff, doctors, nurses and others involved made the whole process easy to go through.
Hello. I'd like to update Alfred's progress. We went to our Medical Centre today for a link up with the Oncologist at the Hospital where he had his radiation. He had a PSA test a couple of weeks ago so we were going to get the results of that and just to chat about how he's been doing. He last PSA which was done 3 months after he started hormone therapy was .013. This was before the radiation. So he finished the radiation a couple of months ago and has been doing well. It's summer here so he feels the hot flushes more than in winter. He does get tired at work but he just stops and has a bit of a rest. No other symptoms to speak of and he's doing well. His current PSA test is .009. The Oncologist said that they have gotten better technology and can now read the PSA to a 3 number reading. Hence the reading. Alfred had a cry afterward when we saw the GP as it's been a bit of an emotional week as it's been leading up to finding out the PSA results. (as well as one on the way to the Doctor's office). The Oncologist doesn't want to see him for a year and doesn't want to do a PSA until a year has passed as well. Smooth sailing so far for us.
It's been 1 year since Alfred had his last PSA test. It was due anytime now as he will have a phone link up with the Oncologist on December 2nd. He had his test a few days ago and we found out yesterday while at the Doctor to get his referral updated, that the PSA is .008. Last year it was .009. We expect the Oncologist to just ask him how he's feeling, any problems, and we'll do another PSA this time next year.
Alfred continues to live and work and get on with his life. You do get used to it being in the background of your life, but you don't think all too much about it - until the regular appointment, and the regular PSA. Then it all comes to the surface and stares you in the face. Alfred is planning to work on his diet (make it more healthy!) and as we are now going into summer he will no doubt feel those hot flushes a lot more than in winter time.
Another year has passed. This morning Alfred had a phone call appointment with the Oncologist who is the Head of the Cancer Unit at the Hospital when Alfred had his radiation treatment. It was a short 3-4 minutes conversation. The Doctor was pleased with things. He is now going to have Alfred have 6-monthly instead of yearly PSA tests and also will be checking his testosterone levels at the same time. There was a discussion as to what happens if things change and what would then be the next step.
The current PSA result was .008 like last year. In a couple of days Alfred has his last 3-monthly Zoladex needle. The Doctor did say it might be a year before the effects of the hormones wear off and he might in fact have more hot flushes instead of less for a while while his body starts adjusting hormonally again.
What has the last 12 months been like? Hot flushes and some tiredness. Alfred is 68 now and still working full time. We did wonder what it was going to be like after his radiation treatments and still being on the hormone injections - how was it going to affect his ability to work as he has a manual style job. He has been doing very well. He will be 69 in March and has decided to retire in June.
Alfred is looking forward to when the hot flushes stop and he can feel more energetic (mostly likely to walk up the beach to go fishing when he retires says the wife!!)
We are thankful for how things have been going and will now have to deal with the emotional 6 monthly blood tests. But at least there is ongoing commitment from the Oncologist and our local GP.
Alfred had his last injection of Zoledex in December and is now on 6-monthly PSA tests. Today we got the results of the first 6-monthly one and they are the same as December at .008.
Since last posting Alfred has had to start on B12 pills due to lower then normal B12. His health is good. He retired at 69 on June 30th. Rather than settle down to retirement and go fishing he is painting the house!!
Overall he's feeling well. Hot flushes are still a problem but apart from that he is up early going for a walk at least 4 days a week, trying to eat well and is enjoying retirement.
Another 6 months have come and gone and Alfred had his PSA tested along with his B12 levels, Vit D and a few other things to see how he is travelling. We are happy to report the PSA has stayed the same at .01. He still has hot flushes and is known to complain about it if you let him! He is still enjoying retirement and is able to do pretty much everything despite turning 70 in March. Next week he starts to trim the mango tree. No holding him back. Next PSA is in June 2018.
Alfred has had his 6-monthly PSA test done. As of May 2018 it has come back as .012. He still has 3-4 hot flushes a night he said even though it's been 18 months since his last hormone injection. He is still enjoying his retirement and has been working on making a small homemade ride on mower from several old dinosaurs he got from the local Dump for $5. It is not finished but he gave it a test run this afternoon and it seems to be working. I call it the Flintstone mower! He keeps himself busy and the only time there is any kind of anxiety is when the next PSA is due. He has made it to 70 years young and I am so glad to see him enjoying his retirement.
Alfred has had his 6-monthly PSA. It has risen slightly and now sits at .11 up from .012 so increasing by .098. The Oncologist's office said that in 6 months time depending on what it is doing they will discuss options. Everyone is different Alfred was told and what happens next depends on how quickly it might rise. Slow rises and they will watch it until it jumps and then from there discuss going back onto hormone therapy.
Alfred is still travelling well otherwise. He had a knee replacement in September and has been a star pupil of his physical therapist. He has his last visit tomorrow as she said that there was no need for him to return. Rare hot flushes are still felt as well but other than that he walks, rides his bike, makes things and enjoys his life.
After Alfred's PSA doing a rise and the Oncologist wanting tests to be done every 6 months, his GP decided he wanted to do them every 3 months so Alfred had one done 2 weeks ago. A call came from the Doctor's office that he wanted to see him. He also had blood tests at the same time to check his thyroid (he only has half his) and for allergies.
Alfred went this morning and the appointment was NOT due to a rise in his PSA but it was about how his respiratory Doctor hasn't done some things he was supposed to do.
Alfred's PSA had gone down! It was .11 three months ago and this reading was .06. Husband and wife are happy. Unexpected but glad. Next blood test and phone discussion with the Oncologist is in June.
Alfred had a PSA blood test last week and a schedule phone call with the Oncologist from the treating Hospital this morning.
His PSA has gone up. It was .06 3 months ago and is now .08. The Oncologist is happy with how things are. He will not be ringing anymore he says as it's 5 years since treatment. He will be sending a letter to our GP to continue to monitor him. We do get reminders in the mail from the Practice to have his PSA blood test done.
The Oncologist said that only when his reading gets to 2.0 will they do anything about anything. As for now - Alfred is enjoying his retirement and is down the shed working on the ride on mower he made. His life is about doing what he wants to do. At 71 his life is good.
Alfred had a PSA test done recently. It's been 3 months since the last one. Results are in: .08 the same as 3 months ago. His Doctor said that instead of 3-monthly blood tests Alfred will have them every 6 months for now. Alfred is travelling well still. Enjoying his life. In about a week and a half we fly to see our daughter and grandchildren in Brisbane.
It's been 5 and 1/2 years since diagnosis. God has been good to us and we are enjoying retirement. Alfred "tries" to eat well, and we walk half an hour every day. He is active, always doing some project or other in the shed. He sleeps in, stays up late, does Word Search books. Life is good with very little concerns for health. We live with the regular blood tests and the "what if there has been a big rise". We'll cross that path when it comes our way. For now, it's live in the present and find the good in people and in life.
Alfred had a PSA test last week. It's been 9 months since the last one and the PSA has gone up from .08 to .34. The Oncologist Assistant, after speaking to the head of Oncology rang Alfred to talk about it and what they would like to do.
He will have another PSA in 6 months as well as a testosterone test; then based on the results they will bring him in for a full body scan. It will solely depend on what the PSA reading is. After all that is done, depending on said results, there will be discussions about what to do further, if anything. Perhaps they will just monitor him until it goes up further.
He is doing well. Tinkering in the shed. Enjoying life. Walking regularly.
Alfred had a PSA test last week. His Doctor wanted one done after 3 months as the last one had a jump. His last PSA 3 months ago was .34 and this latest one is .4. A small jump.
Alfred still heads down the shed and potters making this or that, fixing stuff and doing things like getting on the shed roof and treating rust spots and painting.
It's been 6 years since he had his radiation treatment after being diagnosed in February of 2014. He is enjoying his retirement, has few side-effects and I am happy to say, enjoying his life at 72.
I wish I wasn't writing this. Due to Alfred's PSA rising to .4 he was scheduled for 2 scans. The cancer has spread. There is cancer in his bones - Rib 4, Rib 5, Pelvis and Prostate. He has an appointment with the Oncologist on March 12th to discuss his options for further treatment. We are taking things in our stride and will wait to see what they say.
Alfred is "well". He potters in the shed, goes fishing with his brother, fixes things, makes things, and is doing fine for someone who will be 73 in March.
A new journey is about to begin and we'll see what happens this year.
Here it is March 2022. 8 years have passed since we found out that Alfred has prostate cancer. He had a phone appointment about 40 minutes ago with the Oncologist to talk about his latest PSA test he had about 3 weeks ago. It has risen to 1.5 now. When it gets to 2 he'll be going back onto Hormone Therapy again. He doesn't like the idea of it as he had such a terrible time with hot flushes in the beginning of his original treatment. He might be having some radiation later this year on his rips if the aching from the cancer spots that are there get any worse. Still enjoying his retirement and still spending most of his afternoons in the back shed, fixing something, or working on mower maintenance etc. We are very thankful that after all these years he is still well and still with us. With a score of 9 we weren't sure if he would still be here but he is enjoying his life doing the things he likes doing. The next PSA will be in 6 months and the next course of action by the Oncologist will be decided on in that phone call.
We got the news today that Alfred's PSA has risen to 2.2, which is an increase of .7 in 6 months. Alfred is going through the Townsville Cancer Centre and the phone call from the Doctor was short. He asked Alfred how he was feeling and then told Alfred his PSA and said that it had been discussed with him that once his PSA went up to 2 they would begin treament again - hormone therapy. The Doctor said that he would be putting Alfred in the hands of another Doctor who is an "expert" on medications and he would look at Alfred's results and decide on what medication to have him on and would ring him. We don't know when that will be. Alfred said he felt like the Doctor was in a hurry. The phone call was about 2 minutes in length. Now we wait to hear what the other Doctor suggests.
So it's starting to get interesting.
On October 19th Alfred and I sat having a tele-conference with the Oncologist at our local small hospital. He told Alfred he had "incurable cancer". That was a bit of a in your face way of telling you I thought. It was decided that Alfred would go on hormones and have a full body scan so it could be determined if he needed to have chemo. He said that in the past they would put you on hormones till the hormones failed and then do chemo, but they "have better outcomes" but doing chemo near the beginning. It would depend on the results of the scan.
Scripts and the form for the scan were to be send but after more than 2 weeks and we'd not receive anything a couple of phone calls to the Cancer Centre and it got sorted and the scripts sent digitally to the local chemist in our town.
On the 3rd of November we travelled the hour and a half to get the scan done. We had already received the next tele-conference appointment date. Alfred is take APO - BICALUTEAMIDE tablets for 4 weeks. After 2 weeks on the pills he was to have his first injection of Lucrin Depot which will happen next Tuesday the 22nd November.
We had a tele-conference today the 16th of November. The scan results were excellent. There is no difference to the one he had in Januray 2021. No chemo. Take the injection every 3 months, PSA every 3 months, tele-conference every 3 months.
Alfred has been having anxiety issues. He's not sure if it's with all this stuff going on, or the prospect of chemo etc, but he is going to be seeing someone who will help him to have coping strategies. He was assessed on the 15th of November and will have an appoiintment in 2-3 weeks so we will wait for a phone call.
For someone of 74 years of age Alferd is faring well. He spends time in the shed doing things, occasionally goes fishing off the beach, did a veggie garden this year, and is doing his best to enjoy his life and take it one day at a time. As his wife, I am doing the same. and trying to be supportive.
It's been a while since an update. Alfred is back on hormones. I think he is having his third injection next week. He had a blood test about a week and a half ago and the results are that it is now at .01 reading. That's good.
How has Alfred been? He celectrated his 75th birthday in March. He's been in hospital for the day for observation twice in the past month for things unrelated to prostate cancer. Once for very high blood pressure and once for chest pain. He has started suffering from anxiety and saw a Doctor yesterday and has been seeing someone for the past 5 months once a month to talk about coping strategies, and is now going to be taking medication. I wonder if it's related to the cancer coming back, or getting older and feeling vunerable, I don't know.
He still goes down the shed and fixes or makes things. He is having cataract surgery on the 29th of May so we are doing paperwork etc for that. It's been a rough 6 months for Alfred with different health things happening but he's still going.
Alfred had his 6 monthly tele-link at our local hospital with the Oncologiest at the Townsville Cancer Centre. PSA results are that it's still at .01, the same as 6 months ago. The Doctor was happy with that.
Alfred is doing well for someone who will turn 76 next month. He gets tired and he gets hot flushes but other that he can do whatever he feels like doing. We link up again in 6 months and do another PSA test then.
We forget about it until we see on the calendar that it's time for another PSA blood test. I (the wife) gets a little emotional about what the results will be but we take it all in our stride.
February 2014 is the 10 year anniversary from when we were officially told Alfred had prostate cancer. With a Gleason 9 score we never thought in a million years that in February 2024 he would still be here we would have been rather skeptical considering the prognosis for Gleason 9 men.
But here we are. The Oncologiest is very positive about him still having years to live with all the new things they are coming out with. All we know is .... Alfred is still here and going strong of which we are both greatful of.
Alfred's e-mail address is: createdbythepotter AT gmail.com (replace "AT" with "@")
