At the request of Bluebird and for all of you on the prostate cancer journey I have taken this opportunity to record our journey down the Brachytherapy trail.
So the story begins. My husband was 44, in great health, the prime of his life and things were swell for us. He goes for his routine checkup and our doctor advised that he's a firm believer in preventative care so he's sending him for a PSA screening test – totally precautionary – everything looks good – you're young and in great shape – exercising regularly, etc. etc.
The first blood test comes back a little high – the doctor says – could be anything, stress, infection – take another test next week and we'll revisit it. Second test comes back with the same results. Hmmmm ….. doctor sends him to the urologist for a biopsy – better get this checked out – again precautionary …
He meets with the Urologist – lovely little exam – he says maybe we should just rule things out once and for all – let's arrange for a biopsy – again precautionary (I'm beginning to dislike this word by this time, it was lulling us into a false sense of security)… He goes for the biopsy, not exactly pleasant, but what needs to be done is done and we take some Tylenol and go home for some rest and await the biopsy results.
I make arrangements to attend the biopsy results with my husband. They call his name – he stands up and walks down the hall – I follow. He tells me to go back to the waiting room and the stand-off begins. I'm very stubborn when it comes to certain things – he told me to go back and I stood my ground telling him "I'm only going to tell you this once, regardless of the outcome, we are in this together and I'm not above making a scene if you don't let me in". Knowing I was serious he relented.
We waited for the doctor as the anxiety set it. In walks the young doctor and out comes the chart. There's good news and bad news … my heart was in my throat … "you have cancer" he tells my husband, "but it's early" … at that point I think we shut down – there it was on the table the big "C" word – it had been uttered and confirmed – where do we go now?
Keeping our emotions in check the doctor turned to us and said "I'm not going any further with this discussion right now. I'll give you some reading material, go home and I'll see you in a month because you are likely not hearing anything I've said to you as of a minute ago". While it might seem cold, he was right on the money – we were in shock and couldn't process anything – we wanted to run – we didn't know what to do or how to feel. Admittedly, I made it out of the office to the car and then I cried – how could this be happening?
I am inquisitive by nature so I threw myself into investigating options, definitions, outcomes whatever I could get my hands on. The month came upon us and we discussed all the options – every one of them terrified us. I had an idea of what I wanted to do but the decision was not mine, it had to be my husband's and I had to be supportive. We opted to talk to every doctor about every option and the journey began (again) …
The Urologist recommended treatments in this order – surgery if possible, then Brachytherapy and then external beam therapy so off we went to the Radiologists. The external beam radiologist was first – he was encouraging – "whatever option you choose will yield good results" he confirms. However, I would recommend Brachytherapy over external beam if you're a candidate. Candidate? What candidate? What was this a contest, you qualify or you don't? Little did we know that there were certain parameters to Brachytherapy. Slowly we were becoming overwhelmed – what if we didn't "qualify" .. He assured us that if Brachytherapy, for some reason, was not an option, we had him to fall back on.
Meeting number two was with the Brachytherapist. Lovely woman, very upbeat – not so lovely in my husband's eyes after yet another examination … We went through the usual questions, health – good; children – yes; planning on having any more – no; any signs or symptoms – NO – and that was the kicker – not a sign or symptom other than the precautionary blood test.
She sends my husband for some preliminary testing – MRI, x-ray ,etc. to see if he qualifies. His Gleason score says he does, now we had to see if his body would agree – you can't push a needle through a pelvic bone so everything had to be in alignment. Once again I found myself all alone in a waiting room –trying to make use of the unbearable loneliness – smiling at who walked by, thumbing through a magazine I didn't even have any interest in – reading the same sentence over and over and over again …
We return to the conference room and the doctor looks at him and says "you're young, we don't get very many men you're age"… My mind is screaming – I've heard that so many times now that I don't need to hear it again – it's like confirming that this shouldn't be happening. The tests come back, he's a favourable candidate. By this time we've talked the Urologist and the external beam radiologist and we know this: (a) the tumour is in a "bad" spot, bordering on another organ. If they don't cut enough, they could cut the tumour in half and leave some in, if they are generous in their removal they could nick the other organ and leave him incontinent at the age of 44 – whoa Nelly that's a big consideration … (b) external beam radiation is an option but the doctor would suggest Brachytherapy first … the meeting with the Brachytherapist is the final meeting …
We move from the conference room to the viewing room. We watch the video all about Brachytherapy – the preparations, the expectation, etc. My heart's in my throat again and my husband's turning white … breathe, just breathe, we can do this I tell myself still not quite so sure I'm convincing either one of us …
With respect to timeline, this meeting is in February of 2006. My husband was first screened in September and October of 2005 which is when the PSA appeared "spiked".
The Brachytherapy doctor comes back in to see if we have any questions – of course we have a few – she asks some more, we ask some more and she says "I'll give you my card, let me know what you decide". By that point my husband had already decided. He tells her "no offence but you're my last stop, you were the final doctor we were to meet with, we've made our decision". She looks up from her pad and he tells her "we're in – set the surgery date".
Oddly, at that point some sense of relief came over me – some sense of terror too, but more of a sense of relief. We had talked and talked and talked and weighed options and met with doctors and researched – all to the point of exhaustion. Although every doctor told us we had '"time", "time" was the one thing we didn't feel we had enough of – we had lost a lot of "time" in the investigative part of this journey and we wanted some back. "We've waited long enough" he told her, "we want to move on".
Surgery was booked for two months later – more waiting, and wondering, but at least we had a date. April came and we prepared for surgery – I arranged a ride to and from the hospital because I didn't want to drive and we picked up the necessary pre-surgery supplies. In retrospect, my husband says the prep before surgery was worse than the surgery. When they say "cleanout" they mean it – not the most pleasant experience for either party. Surgery day came and we played the "hurry up and wait" game as we waited anxiously for the surgery theatre. We spoke little as words were kind of hard to come by, crossword puzzles, a fortune spent in magazines did little to pass the time. Finally the call came and off we went – I went as far as I could and then retreated to the waiting room where I tried to work on knitting a sweater – I undid it more times than I care to admit – I could have had the whole thing knit if I could have followed a pattern that day.
After what seemed like an eternity the doctor came out with the "everything went well" speech – see you around discharge at 4:00". I had nowhere to go but back up to his room – I didn't want him to be alone when they wheeled him back up. The guy in the next bed was still downstairs in surgery so his wife and I chatted the best we could – funny how nothing is off limits when your husband has prostate cancer – seems anatomical parts become a part of "normal" conversation and no one thinks anything of it … I guess it's just a form of acceptance at that point.
We got the briefing before we were released – the number of seeds implanted – 91 in all - (my husband's were "stranded" seeds meaning they were strung together like pearls) as part of an experimental study he opted for. There is less chance of migrating seeds and they apparently line the prostate better – we thought what the heck – if we can help the hospital with the study and we're not at any risk – let's do our part. We were given the list of do's and don't and what to eat and drink and general guidelines for recovery – by this time everyone just wanted to go home.
We left the hospital with a fist full of medications for different things – urinary flow and antibiotics among other things – thank goodness for pill containers or we never would have figured out what was what and when it was taken. Add a rubber ring for comfort on the ride home and we were on our way. The next few days were uncomfortable with bruising and a fear of urinating after the catheter came out (yow) but things started to settle down and fatigue settled in. For a man who's not used to stopping for anything, this sure knocked him out – I guess his body decided if he wasn't willing to listen to his body, his body would take charge and it did, and he opted on several occasions for an afternoon nap. There were days when I would have loved to have crawled in beside him and slept for a week but with two boys in the house I had to carry on.
Speaking of boys (or girls for that matter), for those of you with young children it can be trying on them. My boys were 15 and 10 at the time and they reacted very differently to their father's diagnosis. My youngest, the naïve one, simply said "well, we’ll just get it fixed Daddy" and carried on. My oldest, however, was angry, very angry that this could be happening to his Dad and in a roundabout way, to him. He was volatile and angry and it troubled me so see him going though that. We worked through it but I think he was scared – he was old enough to know the "C" word and he knew the possible outcomes. I think reality hit him too when his younger brother announced in the car and unprovoked "you know we'll have to get tested – I know you don't like needles but we're going to have to start getting tested" – he was all of 10 years old – I cried.
We saw the doctor for a follow-up one month later – May 2006. There was another MRI and more x-rays and the PSA screening test. She did another exam – scary how you somehow get used to those exams – is that normal? Results were good – prostate was "flat" and PSA was coming down.
Because my husband's job is labour intensive, he was off work for the next three months. Some people can go back after a few days, some a few weeks – his job was all or nothing so it wasn't until July when he went back. Fatigue was still somewhat of an issue but not like at the beginning.
We were back to see the doctor in August – another PSA test – with good results PSA is down to 0.95! Whoo hooo – we finally let ourselves semi-celebrate. Things are looking "good" she says – see you in November.
We attempt to take our lives back into some sort of normalcy again – busier schedules, etc. November arrives before we know it and we're back at the blood lab. Even better results this time – at six months post-surgery the PSA is 0.61 and we can go back to the Urologist in February and don't have to see the Brachytherapy doctor until June – sounds promising and we allow ourselves to relax (just a little).
Knowing you are never really out of the woods is a scary thought – results are good but the journey is never really over. There will be more tests and more monitoring and before you know it, another dreaded biopsy. Is it worth it – absolutely –but it is draining. We've attempted to use our experience as an education – I've harped on friends and family about the importance of a yearly physical. From a woman's point of view, men have it easy compared to what we go through – get a physical – trust me, it's worth it. Because of my husband's diagnosis, my family doctor now routinely screens mean at the age of 40 for prostate cancer and women for ovarian cancer – while I would prefer not to be the reason for that testing, if he can save one more family with early diagnosis, it will have been worth it.
This experience has taught me a lot – I tried to instill in my children who, by no fault of their own, are now at a 50% higher risk of contracting prostate cancer, the importance of a balanced diet and exercise, the gift of life and the love of family.
If you've made it this far in our journey, bless you, there must be a reason you're here and it's most likely because you or someone you know is on the same journey – be not afraid – you are not alone and medicine is advancing faster than you know – take comfort in that.
Our next appointment is in February, 2007, I'll keep you updated as we continue this journey. For those of you who have helped me through with encouragement, information and advise – thank you from the bottom of my heart.