Following my journey of diagnosis and initial treatment (prostatectomy with curative intent) outlined in another post I thought sharing the ongoing PSA monitoring and the story of my recurrence was also worthwhile.
If this story helps other men with this disease to appreciate the value of monitoring your PSA then sharing the journey is worth it. I will provide comment from time to time when I see my specialist or do follow-up monitoring through the following dialogue:
13/01/17 (10 Months post op) – Like most thinks in life there is always change, so after the operation and recovery road, there was the reality of how certain body parts now functioned and the ongoing routine check ups. The former was simply how it was and time may improve some things – it is a management strategy. The later involves going for quarterly blood tests and seeing the original surgeon for follow ups.
After the removal of a prostate gland the cancer marker (PSA) identified through a blood test is meant to undetectable. For some patients that doesn’t happen and close monitoring is necessary to ensure that cancer has not spread or that consideration of follow-up treatment is reviewed in a timely manner.
In my case I didn’t return to undetectable PSA and it has been slowly rising. Nothing yet to be concerned about according to the medical team – but something to keep an eye on. 2 or 3 monthly testing will be continued to monitor the PSA. It often rises and then stabilises. All good for now with on going medical reviews. Trying not to be overly concerned and living life normally as one can….and taking time to smell the roses.
21/07/17 (15 months post op) – Been busy with life and living in Thailand as you can see from some of my blog posts. It is difficult to try to put this disease out of your mind and not think about it as every 3 month when you go for a blood test that, firstly, creates anxiety about what it will show up and then secondly, when the results come back.
My blood work has continued to show a continued rise of PSA (prostate specific antigen) ever since the first test after surgery. My PSA, using ultra sensitive blood tests, has gone from 0.03 to 0.20 now since surgery. This is not a good sign. As well the doubling time is around 6 months – another worrying sign. Because my pathology after surgery indicated my Gleason cancer grading score was a 4+3+T5 (G8) (high-grade) when considered together with increasing psa and doubling time are suggestive of biochemical failure and distant spread (not confined to the prostate bed)
The diagnosis and treatment of recurrent PCa seems to be a varied science and uncertain art. From considerable research and discussions with specialists there is no standard treatment plan but an assessment and individualised approach. This approach is often determined by the doctors own views and preferred approach – these can vary widely and very inconsistent – all over the world. Research is not conclusive on the best treatment approaches to this disease if primary curative treatment fails.
In speaking with a local specialist he has indicated the situation appears to be an aggressive cancer that has recurred. There are no imaging tests at this level of psa that can locate the cancer to determine any targeted treatments. For PCa that is not localised any longer the standard of treatment is hormone therapy (ADT) – a dreaded approach that has numerous poor quality of life side effects. Research also suggests there is no clear value in starting ADT immediately versus a deferred start – trials have indicated the same benefits and outcome.
Current thinking is to continue to monitor the psa – yes watching it rise and knowing cancer can be growing – seems a strange strategy but treatment options are only guess-work, often with terrible quality of life consequences.
So too early to panic; signs of psa recurrence are clear, but not clear on clinical cancer (PCa) recurrence so the prognosis is a watch and wait approach. Can it grow and metastasize – who knows, maybe yes and maybe no. Looking at my statistics and reviewing some available charts of likely outcomes there is only a 15-20% chance of not getting metastatic prostate cancer at 7 years from now.
I will be heading back to my surgeon in Bangkok for a follow-up probably next month again and see what his thoughts are. There is a new PET/CT scan available in Australia and now Thailand – GA68 PSMA that works very well to image PCa with low levels of psa. So an option for future consideration perhaps?
For now I’m going to see what happens with the psa over the coming months and doctors consultations. The local urologist said to me – “its best to fight the cancer and not the psa”!? So lets see how this all goes.
7/09/17 (17 months post op) – Have an appointment with my urologist next week so headed for the dreaded PSA test ahead of seeing him. On the way to the hospital the sky’s opened up and buckets of water poured down. It was the most intense thunderstorm. Arriving a bit soaked I was lucky to be able to quickly give my sample and leave. The next day the email from the hospital arrived.
This is always anxiety raising – so the result is 0.26 – way up since last test of 0.18 only 2 &1/2 months ago. So what does this mean? Development of biochemical recurrence with a rising PSA level after radical prostatectomy causes significant anxiety for patients and treating oncologist. Management of these patients is controversial. Studies and tables suggest that if you have Gleason 7 disease, but your PSA goes up within two years of surgery and the time it takes your PSA to double is less than 10 months, (this fits my profile) then your likelihood of being metastasis-free at seven years is only 15 percent. Poor odds it seems – progression is likely?
These tables are apparently designed to reassure the many patients who are going to have a long-term, symptom-free, metastasis-free interval. An average 7 year interval isn’t that reassuring in my view! According to a prostate cancer expert, Dr. Wash, he indicates that close observation is all that’s really necessary. He does indicate, however, that if your chances of progressing rapidly are high (mine seem to be with G8 & fast doubling time), you may wish to start hormonal therapy earlier or get involved in an experimental trial for more aggressive treatment. The prediction tables will help you make a more educated decision about your future medical treatment.
So looking forward to my chat with the specialist next week? Another one of life’s challenges to manage – lets look on the bright side.
9/01/18 – (21 months post op) – at the end of September 17 I visited my urologist in Bangkok and also went to Chulabhorn Cancer Hospital to check out their new scanning protocol. He was concerned about the rising PSA and doubling time noting there was a biochemical recurrence. We discussed options and a potential referral to a radiation oncologist. After some discussions it was agreed that we would hold off on this and continue to monitor the PSA.
But before my next visit, scheduled for March 2018 I would have an MRI and new 68Ga-PSMA PET/CT that detects prostate cancer recurrences with accuracy superior to conventional imaging. This scan is now available in Bangkok and is good for finding prostate cancer at lower PSA scores. The concept is to try to locate the cause (lesions) to better inform next steps/treatment plan. Blind or guessing at radiation targets isn’t something I am keen to do given the poor success rates.
Research is suggesting my GS 4 + 3 with TP5 was associated with shorter time to recurrence versus GS 4 + 3 alone. This has proven factual. Development of biochemical recurrence with a rising PSA level after radical prostatectomy can cause significant anxiety for patients and treating urologist/oncologist. Management of these patients, such as me, is controversial.
My continued PSA monitoring hasn’t provided any encouraging results. The tests that I have done locally in Chiang Mai at Maharaj Nakorn (Suan Dok/Sriphat) Hospital Special Medical Service (laboratory) show a continuing rise from 0.26 at a previous check with the last PSA reading in November of 0.36 and now in January 2018 of 0.48. The doubling time is just under 5 months.
So what are the next steps and treatment options and when should they be initiated? So many questions and so little in terms of definitive answers. There seems to mixed opinions on early treatments vs wait and see and try to find out what is causing the rising PSA. One doctor has advised not to treat the PSA but to wait and treat cancer when it is located.
Once Bio Chemical Recurrence (BCR) occurs, the patient is understood to have recurrent PCa, even if there are no signs or symptoms of locally recurrent or metastatic disease. Despite signifying the return of disease, BCR alone may have or not have an impact on either the patient’s QoL or their overall survival (OS).
The challenge faced by clinicians in managing BCR is to prevent or delay the onset of metastatic disease and the resulting morbidity and mortality, while taking into account the negative impact that treatment may have on patients’ QoL, and at the same time avoiding over-treating PCa that is at low risk of clinical progression. Physicians are faced with a number of options for managing patients who experience BCR and often the best way forward is unclear. This chart attempts to simplify the standard options.
If BCR occurs within 6 months of RP, this is a strong indication that metastasis has occurred, and a short PSA doubling time (PSA-DT), regardless of the time to BCR, is correlated with early clinical recurrence. The interval to BCR following RP in men with high-risk disease, early BCR substantially increases mortality. My recurrence may closely fit this profile.
By amalgamating the available evidence, those who may be at high risk of metastases and PCa-specific mortality have been identified as those with a PSA-DT of ❤ months, (I’m 4.5 months) specimen Gleason score 8–10 (I’m G8), or BCR within 3 years (I was about 1 year). An area of uncertainty regarding whether to classify a patient into this high-risk subgroup exists for when their PSA-DT is between 3 and 12 months – again I am fitting generally into this profile.
Once BCR has been detected, it is important to try to establish whether this represents local recurrence or disseminated/distance (i.e., metastatic) disease, or both, in order to guide subsequent treatment decisions. Importantly, metastatic disease must be acceptably ruled out before subjecting patients to local salvage treatment, owing to the significant morbidity associated with such treatments.
This is why my medical specialist is concerned about what is going on, but for now I will monitor, hold off on uncertain treatments that result in poor quality of life. Let see if any lesions can be found in the prostate bed, lymph nodes or other sites in the body first before heading down a less promising path of chemical treatments.
I have been having prostate cancer marker (PSA) monitoring blood tests every few months since my original surgery in April 2016. The PSA has been continuing to rise ever since my surgery and is now considered as recurrent PCa.
Recently I attended a Bangkok hospital seminar on this issue and have been extensively researching information on biochemical recurrence. This is to ensure I am informed the best I can be on next steps. With biochemical recurrence the next step is to try to find the source of the recurrence and then work out what and when treatment should be commenced.
08/05/18 (25 months post op) – It is concerning to have a recurrence so soon after surgery, with a high risk cancer of Gleason 8. The PSA is now at 0.71 with a doubling time of less than 5 months.
It seems that once recurrence is confirmed the first step is to determine if the cancer is localised (still in the area of the prostate gland) or has spread to other areas of the body. This involves imaging tests and checks of the PSA doubling time (for example, a rise from 0.4 to 0.8 ng/mL), to try to determine how quickly the cancer may progress.
Treatment options for prostate cancer recurrence are as varied as they are with an initial diagnosis. The choice will be narrowed by the initial treatment choice. Options presented for prostate cancer recurrence may include:
There are also treatment options for prostate cancer that has metastasized.
The problem with recurrent PCa is that salvage therapy is a difficult treatment to determine and particularly when to do something. Salvage therapy is both toxic and full of unwanted side effects that can greatly impact one’s quality of life.
So for now I continue to monitor and explore the cause of the recurrence and hoping to undergo an advanced 68 Gallium PET/CT scan, suitable for lower level PSA, in the coming months in Bangkok to try to find the recurrence site and to discuss options with my specialist.
01/09/18 – It all starts again? – So this journey has been continuing since my last update. My most recent PSA result showed 0.91 – it has continued to climb. Something is growing and producing PSA.
It was time for the new specialist scan, 18F-PSMA PET/CT at Chulabhorn Hospital Cyclotron Center. On the 19 July I undertook the procedure and the following week received the result. – 4 mm focal PSMA avid lymph node at right internal iliac node that favored metastatic disease. Ok, not the best news. This now means I have stage IV metastatic prostate cancer – at least there is a known source for the rising PSA and a target for therapy – if I want to deal with it.
So being in Bangkok I had appointments with 2 urologist and 2 radiation oncologists at both Chulubhorn and Siriraj Private Hospitals to discuss the situation and options. Hormone therapy and radiation treatments to prostate bed and pelvic lymph nodes were suggested. I also returned to Chiang Mai and had an appointment with a recommended urologist and radiation oncologist at Sripat Hosptial. The urologist suggested the option was to commence hormone therapy followed by radiation treatments. After a further consultation with a local medical oncologist about the situation and suggested options I decided to pursue treatment.
The thinking and options were based on the fact that the metastatic location was known, there was a clear recurrence and likely other micro-metastatic cancer lurking. Get it early before it grows or spreads was behind the thinking – right or wrong? – only time will tell. The plan is 6+months of ADT and 33 radiation treatments to the prostate bed, pelvic lymph nodes and the metastatic lymph node using the Tomotherapy machine at Suan Dok Hospital.
On the 28th August I received my first leuprolide acetate (Enantone L.P) injection that is to last 3 months. You can google this drug or Lupron to find more details on its actions and efficacy. It stops the production of testosterone the hormone that feeds prostate cancer. It brings you, chemically, to castrate levels. This can then cause a wide range of side effects in men. Some get few and others get many of the known side effects. Searching the internet will give you information of the listed side effects which can be unpleasant and impact negatively on the quality of life. So far I have not had much in terms of side effects but only 3 weeks into this – and am told it normally takes up to a month before you see these.
On Monday 17th September I have started with 33 radiation treatments. After an initial planning CT the radiation oncologist explained the treatment plan, likely impact to adjacent vital organs and side effects explained. The first day on the machine involved getting me positioned and the doctor confirming the radiation plan and target areas. Now I have had two treatment and it takes about 2 hours a day involving travel to and from home, time at the hospital preparing, waiting and doing the treatment (that only takes about 15/20 minutes – for 4 minutes of radiation).
So there you have the next step in the journey. I will be taking a PSA and testosterone test next week to see how the ADT is working to lower both. For now its business as usual and waiting to see if and when side effects appear. I try to eat soft foods and lower carb meals. Walking the dog daily is also a good therapy. I will report back later in the treatment plan.
1/12/18 – journey update – I finished my 7 weeks of radiation therapy on 2 November. The radiation was delivered in 3 phases for a total of 66 GY – Phase 1 was 23 sessions of whole pelvic; Phase 2 was 7 sessions of lymph node & prostate bed, Phase 3 was 3 sessions to prostate bed only.
On the 29 November I had another 3 month injection of Enantone LP (leuprolide) 11.25 mg- Leuprolide is a gonadotropin-releasing hormone (GnRH) agonist. It works by decreasing levels of certain hormones produced by the testes and ovaries. This prevents the growth of certain tumors that need these hormones to grow.
The journey has been tolerable although there has been some unpleasant side effects during the treatments. While radiation itself is painless, residual damage and build up of radiation caused me some urination and bowel pain when going to the toilet. Some bladder pills and bowel medication helped to control the discomfort. In terms of the hormone treatments I have been fairly lucky – compared to what I read of others experience. I have had the odd hot flash (tolerable), extreme tiredness (combination of radiation + hormones), and the odd bout of feeling malaise and unwell.
I do find that motivation is often lacking and my tiredness comes on mainly in the afternoon. While it hasn’t limited me from general work and life activities, I have found that limiting late afternoon outings to be beneficial. I have cut back on my public events in my role over this period as a result.
The next doctors visit is in 3 months after the hormone therapy is finished then onto some monitoring of PSA and testosterone recovery. Time will tell if these secondary treatments after my prostatectomy will be successful in either – eliminating PCa or putting it into remission.
Always Hope & Life’s Happiness
The positive thing in dealing with this is hope. There may be a good chance that this cancer can be treated successfully. Treatment options continue to evolve and new research helps doctors determine what treatment — or combination of treatments — are most effective for recurring prostate cancer.
Thought Piece on all this
Waiting, uncertainty and what to do and when to do it – is a bit of a mind game. One must look positively, however, on life so some advise I saw recently is helpful to be focused on: “Stay as fit and healthy as the hand you’ve been dealt allows; live in the present and soak up all that makes life enjoyable, for whatever time you may have”.