With the initial diagnosis of my prostate tumour in February 2015 by a clinical needle biopsy which indicated a Gleason score of 4+5=9 a radical prostatectomy was done in March 2015 since my Urologist confirmed that the tumour was found within the capsule of the prostate gland. The post surgery pathology report was as follows:
Pathological staging :T2N0M0; seminal vesicles not involved, pelvic lymphatic nodes not invaded, perineural invasion present, surgical margins positive, no extracapsular extension, Gleason score - 4+5=9. (main points of the report)
I did not suffer any lasting post surgical side effects including urinary incontinence although I had a catheter for 2 weeks. My PSA; before surgery was 11.7 and fell to 0.127 after 25 days and 0.097 after 40 days, before taking any adjuvant treatment. I started on ADT (Zoladex 10.8 and Bicaltamide 50mg) from 27.4.2015 and still didn't experience any side effects. As advised by my Urologist and Oncologist I will be starting on radiation therapy (TOMO) from 15.6.2015. There will be 45 sessions of radiation (45 days) and the hormone therapy will continue for a period of 2 to 3 years.Sometimes I may experience side effects from radiation but TOMO will minimize them. I can be optimistic about my prognosis. However I don't ask for promises for cure from doctors in a disease of this nature!
I am glad to become a member of the YANA community so that I can benefit by interacting with others who have similar experiences and want to help each other.
Wishing good health to all,
It has been almost 6 months since my original posting and this is my first update.
Let me begin with my PSA levels :
Before surgery (RP) on 15.3.2015 - 11.7ng/ml
After RP in April 2015 before starting any adjuvant treatment - 0.079
After starting ADT (Zoladex 10.8mg - 3months) and Calutide 50mg daily. June 2015 - 0.002
August 2015 - 0.001 October 2015 - 0.003
I am on Zoladex since April 2015 and took my 3rd shot on 28 October 2015.
In the mean time I completed 38 sessions of intensity modulated external beam radiation to my prostate bed with a total dose of 74Gy using the latest 360o Helical TOMO technology. (Main purpose was to avoid undesirable side effects). Radiation period was from 15.6.2015 - 5.8.2015.After completion of radiation I experienced some pain when passing stool. But no diarreah or bleeding. This is due to inflammation of the rectum and it was relieved with some medication.
Not much noticeable side effects from continued ADT. I take healthy meals and do my usual body exercises which includes walking daily in the morning for two hours. I am fully continent ever since my surgery and also fully impotent. At my age 68 years I consider the latter as unimportant since cancer-free survival (if possible) or long term remission is more important than anything else.
After the second Zoladex injection I was also referred to an Endocrinologist/Diabetologist by my Urologist to look after my Bone Health and other Metabolic Aspects. In fact it was I who reminded him to do that! They don't seem to take a holistic approach in treating cancer which I think is not proper.
I benefited a lot by going to the Endocrinologist. In addition to the known usual tests for Cardiac, Liver, Kidney and Glycemic control functions which were found to be quite normal, the following special tests were done.
DEXA Scan, Vitamin D3 and Ionized Calcium.
Dexa Scan measures the Bone Mineral Density (BMD) by way of T-Score. Measurements are taken for the four lumber vertebre and the two hip joints. T-Score above -1.0 is normal and unfavourable scores indicate Osteopania (beginning of bone mass loss) and Osteoporosis (fragile bones). At present my BMD is good. However, same has to be checked again if I am going to be on ADT over a long period of time (Andropose like in the case of Manapose in women).
My Calcium test too proved to be good at 4.68mg/dl (Normal range : 4.36 - 5.20)
My Vitamin D3 level was insufficient at 27.8ng/ml.
Vitamin D3 (Cholecalciferol) is very important for bone health and also recent research studies have proved its importance in the treatment of cancer. D3 has the ability to even repair the mutated DNA of the cancer cells to make them normal and in some instances cause cell death (apoptosis). The desired levels are 50 and above. (normal range 30 - 100ng/ml). For cancer patients the ideal level is: 70 - 90.Blood vitamin D3 levels should not be increased without doing the test first (25hydroxy (OH) Vit.D) along with Ionized Calcium blood test. Increased levels of Vitamin D may elevate the levels of blood calcium. Excess of both or one can cause toxicity. All this blood work should not be done without the advice of a Doctor.
To boost my insufficient level of Vitamin D3 immediately I was recommended to take a course of Vitamin D3 injections for three months at one month intervals. (each time 30,000 iu). This injection is very cheap - USD.1. With great benefits the price is unbelievable. After completion of the injection course I will have to take CAD 1000 (Colecalciferol 1000 iu) daily for some time.
I have been advised by the Endocrinologist to repeat the above tests after 3 months and see him to review the position.
I appeal to all my dear brothers who take treatment for prostate cancer to discuss this aspect of Vitamin D3 with their Doctors and avail of the great benefits of its action although it is not a cancer treatment drug. Since it is very cheap everybody can afford to buy it. That may be the very reason why multinational pharmaceutical companies don't want to develop cancer curing drugs based on the marvelous action of Vitamin D3! They are interested in introducing to the market only extremely high priced cancer drugs.
I am expected to continue my ADT for 18 months ending July 2016 which is a safe period for me with anticipated low PSA values (undetectable). Therefore at present I have a peaceful mind and I am leading the usually happy life with my family and grand children. I have a very devoted wife, two daughters and a son. All my children are married and each couple is having two kids. My second daughter and the son are residing in Australia with their families. My eldest daughter is staying close to my house with her family in Sri Lanka. She and her husband are highly involved in my unexpected sickness and give amazing support.
I do lot of research reading on the subject of Prostate Cancer. It gives lot of ammunition to fight this battle. In fact I feel half the battle is won with the empowerment of knowledge. The other half I can fight bravely. "Never say die" is my slogan. And I believe that Fortune favours the Brave.
If there is going to be any significant changes in my PSA behaviour when I come off my ADT cycle or having to change the treatment protocols accordingly, I will include them in my next update which at the most three month's time from now.
I remain holding hands tightly with my dear brothers at YANANOW and let us march together with all the courage we have until we overpower whatever is going against us !
Peace and Lasting Health be yours .....to all !
This is my second quarterly update.
As scheduled I met my Urologist for the 4th Zoladex 10.8mg injection and on the next day my Oncologist to review my present position. These consultations were done during the last week of January 2016. My PSA then was 0.008ng/ml and I had no other complications to be reported to them except impotence which I have accepted more or less as a permanent side effect of the radical prostatectomy (all sex nerves gone).
Asked whether there is any concern regarding the slight increase in my PSA from the previous 0.003ng/ml, both physicians said the values are well below the nondetectable level and the PSA might fluctuate up and down before being stabilized. And I am doing quite well. So to continue with the Androgen blockade and Calitide 50mg once daily until further advice. Next review is scheduled on 27th April 2016.
One week before my last Zoladex shot I also met my Endocrinologist/Specialist Physician to whom I have entrusted the responsibility of looking after my overall health condition in view of the aggressive cancer treatment that I am receiving.
The reports he had called for indicated that all important health aspects of concern were fine such as : Lipid profile, Liver profile, Kidney functions, Blood sugar control, B/P, Electrolytes, Vitamin D3 has now been restored to an ideal level of 90ng/ml from a previous deficient level of 27ng/ml, proper level of blood Calcium, low Testosterone level of 9.8ng/dl. These tests will be repeated and reviewed every three months. My Bone Mineral Density was checked 6 months ago by a DEXA Scan and found to be normal and this test will be done yearly.I do regular exercises and my body weight is static at 75kg. Diet is well balanced which does not include red meat, eggs and full cream dairy products. Body energy levels are fine.
Despite all the above good features of progress, whilst hoping for the best I am also preparing for the worst because my specific Risk Profile indicates a high risk prostate cancer mainly because of Gleason Score being 9 and the Surgical Margins being focally positive. I had no other negative pathological risk factors found after RP and my cancer was T2 organ contained. And I was subjected to early adjuvant treatment with IBRT and ADT double blockade. Therefore the future risk hurdles I envisage are as follows:
1. Cancer Recurrence - This will definitely happen in view of the two high risk factors that I have mentioned above. It is only a matter of time. The effectiveness of the treatment and its management will determine the time frame, whether the return will be after 5 years, 10 years or 15 years.This will be indicated by a Biochemical Relapse/Recurrence with a PSA value > 0.1ng/ml in my case.I have the opportunity to put the cancer back into long years of complete remission if my doctors treat me in the right manner.
2. Disease progression and Metastasis - This will be indicated by greater increases in PSA values despite treatment protocols. Spreading to lymph nodes, bones, and other organs and tissues within and beyond the pelvic region might take place. It will be difficult to locate where the metastases are at early stages unless we use very advanced and expensive tests. This stage will reach when the Hormone therapy fails as the cancer cells eventually become hormone refractory or hormone resistant. With the cancer progression the disease is said to be "systemic" at this stage.
I have already told my Urologist and the Oncologist that I come to them for two purposes both of which are equally important to me - For cancer treatment and cancer education. And they must give me the freedom to ask questions and clear my doubts. I also told them that I read extensively in the internet on Prostate Cancer. They said they will only be too glad and appreciated my attitude.
Everyone of us who are in the medium risk and high risk category are in a battle field.
There is no more "watchful waiting". Do or die. Do your best to to survive. Set your goal and work towards it. Nobody will set this goal for you; it is your life and you have to do it. I have set my goal between 15 and 20 years. Now I want to develop a Strategy to achieve it. Then resources will become necessary such as knowledge (indispensable), excellent doctors, innovative treatment protocols, sufficient funds, family members or friends to help - Prostate cancer support groups are a golden resource.
I know for sure, majority of our urologists and oncologists will not set any goals for us or give us a definitive strategy. They only treat us with drugs. Their treatment protocols are mostly based on decades old cancer treatment models. Yet for this battle we need a strong Strategies and it is imperative. Please look at this quotation from a world renowned oncologist :
"Prostate Cancer is like a fingerprint - requiring uniquely tailored Treatment Strategies"
The paramount important factor is prostate cancer knowledge. There is no substitute for learning and I bought the following priceless books last month from Amazon.com. to build up my knowledge on the subject.
1. Beating Prostate Cancer : Hormonal Therapy & Diet by Dr. Charlse Myers $42.99
2. Prostate Cancer Breakthroughs 2014 by Dr. Jay S. Cohen $9.75
3. Surviving Prostate Cancer by Dr. Patrick C. Walsh $14.35
(The first two doctors themselves are prostate cancer survivors)
I know, sometimes it can be a challenging task to get the agreement of our doctors to a desired Strategy and then implement same. But if there is a will there should be a way. I will try my best and keep you all informed of my progress.
For the time being think seriously of a Strategy.
I wish all my brothers at YANA and their family members a Happy New Year with Peace and Good Health!
Tribute to Terry Herbert, founder of YANA, who passed away in 2014!
This is my 3rd quarterly update and I had a low-key celebration on my First Anniversary since undergoing my Radical Prostatectomy in March 2015.
Brief summary of my case :
Pathological staging : T2cNoMx - Gleason 4+5=9, Positive Surgical Margins;no other adverse factors.RP followed by IG IMRT; ADT + Calutide : completed 1 year and started the second year in April 2016.
PSA Test Records after RP,IMRT and ADT :
April 2015 - 0.07ng/ml
June 2015 - 0.00ng/ml
August 2015 - 0.00ng/ml
October 2015 - 0.00ng/ml
January 2016 - 0.00ng/ml
April 2016 - 0.00ng/ml
I took my 5th Zoladex 10.8mg injection on 30 April 2016 (1st shot of the 2nd year).
Since I have been following a very aggressive course of treatment (RP, IMRT and ADT2) at the end of each quarter I check my main metabolic functions and the following tests were done in April 2016.
Cardio vascular : Lipid profile; Blood Pressure
Bone Mineral Density : DEXA Scan (every 6 months only); Bone Profile (Blood Test); Ionized Calcium; Vitamin D3
Liver Profile : Blood Test
Renal Functions :ALT/AST; GFR & SCr.
Blood Sugar : HBA1c and FBS
So far all the above test results show good status.
Diet : Heart healthy only, with lot of vegetables and fruits (Antioxidants - important)
Body Weight: Under control with daily exercises (Brisk Walking)
Doctor Visits: Urologist/Oncologist : Once in 3 months
My prognosis looks favourable mainly because I have taken two 'Gold Standard' curative treatments namely RP and IMRT well in time followed by ADT which is though palliative is systemic (whole body) which can suppress cancer progression over a long period.However, since my Gleason score is high there is no sure way to predict.
Out of the three books I bought recently, A Guide to Survive Prostate Cancer written by Dr. Patric C. Walsh is amazing. It is almost like a 'crystal ball' because you have answers to all your questions and it is the ultimate book so complete in every aspect of the prostate cancer!
Further, I have carefully studied almost all the regimens used to treat prostate cancer at various stages with every detail and also took some time to learn cancer biology to understand better how to mange the disease properly.If something happens I know why it happens and the power of knowledge will always keep me in high spirit.I think if you don't understand the cancer you might have more trouble.
There isn't any change in the happy times I spend with my family, grand children and friends.
I wish you peace, happiness and good health all along!
Till I meet you with my next quarterly update in August 2016,
Here is my latest quarterly update.
To begin with my present PSA is 0.00ng/ml (Standard test done on 20.7.2016)
I took my 6th 10.8mg Zoladex on 28.7.2016 (Going for 2 years commencing April 2015 )
I suffer no side effects from any of the treatments including IMRT and Calutide in addition to ADT except complete impotence.This is not a worry for me at all in my specific situation.
Since I have gathered lot of knowledge on the subject I have no difficulty in managing my case and also due to a strong support network I have built up. I get excellent advice from these resources before I meet my doctors, so I feel very confident about the treatment that I receive without having to accept blindly what doctors just offer.
I have been able to maintain all my other important metabolic functions very well by doing all necessary tests with the support of a well experienced specialist/endocrinologist whom I have selected on my own. My urologist and the oncologist are good but both are conventional in their treatment approach. I met both after the last PSA test and both were happy about my condition.
My current position is about the best I can achieve considering the most aggressive type of prostate cancer diagnosed in me - Gleason 4+5=9. Fortunately I have taken timely action and the best initial treatment though aggressive from a 'quality of life' point of view.
Having embarked on an early and continuous ADT I am in a "catch 22" situation not knowing what the cancer will do unless I stop the treatment and see. Due to the circumstances of the case early withdrawal from ADT can also increase my risk of recurrence. The paradoxical rule in the novel "catch 22" by Joseph Heller (1961) which has become an interesting idiom is very useful to understand this dilemma. So even with zero PSA and no apparent symptoms I am not in a position to predict my prognosis.When I asked from a mentor from whom I often seek advice when in doubt, he put it beautifully and wisely like this. "I am aware of men like you who are stll alive and relatively healthy some 20 years after their initial diagnosis and treatment. I am also aware of men who had far less satisfactory responses to treatment and had died within 5 years.
In any situation I will do my best. I am always happy and ready to accept anything when it is clearly explained and I hate confusions.
Since my surgery (RP) in March 2015, IMRT and the present ADT, I have a feeling my bowel habits have changed somewhat. I have never had any gastro intestinal problems before and not done any tests in this system. Considering the age and the traumatic experiences my GI tract was subjected to during the prostate cancer diagnosis and adjuvant treatment, I thought of getting a colonoscopy done. I have fixed up an appointment with a Gastroentrologist next week to do this test for me. This test can disclose many important things including cancerous developments among other things.
I am enjoying life with my family members and friends as same as before. I also communicate with quite a number of YANA members from time to time and also never forget to read their updates. I follow up them in a systematic manner and this website is really, really good!
I wish you all Good Health, Peace and Happiness!
Here is my regular quarterly update.
My PSA is stii remaining at 0.00ng/ml (Tested on 20.10.2016)
I took my 7th Zoladex 10.8mg shot on 30.10.2016 (Going for 2 years and only one more is remaining)
There was hardly anything to be complained and my Urologist and Oncologist were both happy about my status.
I did't do the colonoscopy as anticipated since the gastroentrologist at the consultation told me that it was not necessary in the absence of any significant clinical symptoms.
All the other tests usually I do to esure the status of the vital metabolic aspects of my overall health showed very good results.viz.
- Bone health (Bone Mineral Density - DEXA Scan)
- Vitamin D3 (Colecalciferol) - Supplement- tablets 4000iu daily
- Lipid Profile
- Blood Sugar tests
- Liver Profile
- Tests for renal functions
I am on proper diet and regular exercises and maintaining ideal body weight.
Only time will tell how long I will be in remission when I come off the present ADT2 treatment regimen. I have decided not to buy any more time with further ADT in the event of a biochemical failure because there can be remaining micrometastatic cancer cells which woud have escaped from my prostate gland even before the surgery (being Gleason 9) and some of them can be hormone insensitive. For these cells hormone therapy is totally irrelevant and if time is given they will silently proliferate and sooner or later can cause disaster.
Therefore, before this happens I want to use Docetaxel (chemo) as early as possible when the cancer burden is low and kill these nasty cells. Only antimetabolites (cytotoxic drugs) can do this killing job. I am prepared to tolerate the side effects which are known to be significant.I hope this will help me to hold the bull by its horns.
I am reading a lot, interacting with many PCa support group members (Three very active groups) and gaining knowledge and confidence to manage my disease well.
The future looks brighter for all of us with the new drugs and treatment strategies.
May all have the benefits of these and move forward with abundant hopes!
Here is my regular quarterly update since my original posting in April 2015.
I am still on continuous ADT2, two year regimen with Zoladex 10.8mg plus Calutide 50mg which will end up on 30th April 2017. During this whole period my PSA checked every 3 months has remained at 0.00ng/ml (standard test). My last PSA test was done on 25th January 2017 and my last Zoladex shot was given on the 30th January 2017. My Urologist and the Oncologist were both very happy with my progress and the condition. Before entering the ADT I had taken two best curative treatments - RP and IMRT immediately after my diagnosis in February 2015 with GS9 PCa. Post surgery pathology to summarise again: T2cNoMx - Organ confined PCa with no other involvements of spread, but GS 4+5=9 and positive surgical margin. Thus far I am asymptamatic and from the present stand point I am hoping that I should be able to achieve a stable long term remission when I come off the current ADT regimen. But there is no guarantee for such a status or for a cure. My treatment approach now is simple: Taking the best available treatment at the right time to deal with the PCa. Side effects and the quality of life concerns are of secondary importance. The primary objective is to cure or keep the PCa at bay and survive. Over the time I have learned almost all treatment options available to treat PCa and always keep abrest with the ongoing research and the new drugs used in treating PCa. I interact with an excellent PCa support group on a daily basis and what I gain from this community is amazing: This forum is "HealthUnlocked" of MaleCare. Just fantastic! You can pick up some great brains.
Whilst managing the PCa disease I am also paying serious attention to my other vital metabolic functions. All those aspects remain tip - top as mentioned in my previous reporting.
Regular exercising (Daily I do 1 and 1/2 hours brisk walking in the morning) and proper diet with body weight control, I consider as very important besides PCa treatment. My diet excludes red meat, too many eggs and dairy products and include vegetables rich in antioxidents and vitamins. daily I take broccoli, cooked tomatoes (lycopane), olive oil and black pepper (all natural supplements) along with the food I eat. I eat plenty of small fish, salmon and drink green tea (3-5 cups for a day). I also take 3000iu of Vitamin D3 daily. Avoid sweet stuff as far as possible. Despite my ADT treatment I have no blood sugar or cholesterol problems. These are all created by bad food habits and could be a major cause for cancer formation and progression too.
Except for sexual intercourse which I don't worry at all, I am enjoying life to my heart's content with people whom I relate to. I have a closely united family of three children and six grand children who always flock round me and my wife.
I am reaching 70 on the 16th of April. Life is beautiful and worth living. I see many rainbows in the sky.
May happiness and peace creep into every one's heart with soothing and healing prayers!
Love to all
As usual I am back with my update after 3 months from my last one posted in February. This update is relatively more important because I have come to the end of my initial treatment regimen which began in March 2015 : RP + IMRT + ADT. Hormone Therapy was continuous for 2 years with Zoladex which ended in 30 April 2017 as planned (8 shots 10.8mg). Fortunately I didn't suffer any troublesome side effects from any of these treatments except 100% impotence which I accepted as a known consequence. Up to date my PSA has remained undetectable for the entire period of 2 years. I have no other health issues.
Since I am a member of two other very good PCa support groups which interact on a daily basis, I put my question to them "WHAT SHOULD I DO NEXT?" after briefing them about my case and the current situation after treatment. All who responded to my question opined that for the present I don't need any further treatment except the careful monitoring of my PSA. I agreed with this.
But I am aware I have 2 high risk factors potentially dangerous : GS-9 and Positive Surgical Margins. I don't know exactly how long I can remain in remission with undetectable PSA with no further treatments and when a biochemical failur would occur. I am well informed and I am proactive.I am prepared to use any strong weapon in this battle with no loss of time.
I have read in Dr. Myres's book "Surviving Prostate cancer : Hormonal Therapy & Diet" that when he brings his patients to complete remission by using ADT, he gives them Avodart (Dutasteride) which is a 5AR inhibitor that will suppress the synthesis of DHT used by the PCa cells, when the patients stop their hormonal therapy. He says, this will help them to remain in remission for many years. Since my situation is also similar, I decided to follow the same approach and from today I will be taking one Avodart per day. (My doctors have no objection).
Many a time including the last one my PSA test indicated 0.008 and I am a bit impatient to see it after 3 months next off my 2 years ADT. I hope it will not change!
Best of luck to all my friends here at YANA
Greetings to all!
Here is my regular quarterly update.
Past 3 months, off my initial treatment RP + IMRT + ADT (2 years continuous) my current PSA remains stable at 0.008 ng/ml as of 30.7.2017. For the past 2 years this figure has not changed when checked at 3 months intervals.
Last month I did a COLONOSCOPY to ensure that I have no problems in my gastro intestinal tract. The investigations revealed that everything is normal.
I have been experiencing joint pains over a long period of time. Since PCa also may induce bone issues, I did a Bone Profile blood test to check the serum level of Alkaline Phosphatase. The result was in the normal range - 126.5 u/l. (Ref. Range : 98.0 - 258.0 u/l). So with this result and the undetectable PSA I think my joint pains are due arthritis.
At present, things are well under control and I am having a wonderful time with my family and friends.
May you all be happy and stronger to live longer as you so desire!
Here is my regular quarterly update.
Latest PSA checked every 3 months has remained at the same level - 0.008ng/ml. (Nearly 2 years and 7 months now)
All other test results related to the vital metabolic body functions too indicate normal status.
However, last week I consulted my Urologist and the Oncologist as usual although no treatments are required at present.
Obviously the only potential risk I am facing is a possible RELAPSE because my PCa is GS9. Since I have taken the most aggressive treatment well in time and managed my case very carefully, I hope I will continue in my present remission long enough. But there is no guarantee. Thus I am quite prepared to handle any situation if there is going to be a biochemical failure.
Otherwise,I am enjoying a very much relaxed life with my family members and friends. I can easily get drowned in music and also reading good novels gives me the opportunity to live in different times and understand human behaviour from different perspectives. All in all I can easily forget the time I have to live whilst sitting on a Time Bomb!
May you all be blessed with courage to fight against this Beast and see the light of a Winning Battle to live long with your loved ones!
Sisira's e-mail address is: ksisira1947 AT gmail.com (replace "AT" with "@")