Received a PSA test result of 126 last Friday (17 January 2014). Oncologist appointment this afternoon. Very scared.
Bone scan all clear which is a relief of sorts. 2nd PSA was 97 as opposed to 126 is of no consequence. MRI Scan next week which I guess will tell me more.
MRI found prostatic tumour. Seeing urologist tomorrow. Suggesting hormone treatment after a biopsy possibly followed by radiotherapy.
Been graded T3a and had a biopsy waiting for the results and expecting a high Fleason. Pelvic lymphs at 6mm which is not very swollen apparently (over 10mm definitely bad they say). Reading up a lot and still dont really understand why no surgery is recommended as surely its better to have the thing out than in? Asking for a second opinion at the Royal Marsden. Embarking on a new diet excluding red meats, fats etc and plan to do more exercise. Unhappy that this is happening to me but very happy that we have the NHS here and feel in good hands.
Spent the last week skiing in the Swiss Alps, the only symptoms being the ones from my biopsy. Today I learned my Gleason is 4+3 (7b) which I think is better than they expected. Both the radiologist and surgeon have said that surgery is probably not necessary because it most likely has spread with a PSA of over 100, although there is no evidence of this. However both of them said they would have surgery if it was them. So do I have surgery, hormones and radiotherapy or just hormones and radiotherapy? Any suggestions welcome. I feel I need to make a decision qickly but cant work out if the consequences of the surgery outweigh any benefit?
Hello again my new and unwanted friends. No offense but who would want to join you lot by choice! Thank you for the help and guidance from those who have contacted me. I am not alone....
Now they are not sure if the prostatic cap has been breached so I am going for a PET coline scan. Apparently this shows better if the cancer has actually spread. Trouble is its going to take time and I cant start on hormones until I have this data and so I cant make a decision on treatment. Walking around with a PSA of over 100 cant be a good thing but I am assured that the delay wont make any difference. Is this true? Should I just start on the hormones? After all with this PSA surely there is no point in surgery?
Yesterday had a CT PET scan and next week see my oncologist and another MDT team for a second opinion on all the tests and follow on treatment. I've been 6 weeks now walking around with a PSA over 100. Seems odd but I'm the only one that seems overly concerned about that fact.
Anyway by Thursday next week I will know everything I can and have a second opinion. Somehow if all the lymphs are clear the decision will be harder as the removal of the prostate will become a real option. Not sure what I'm crossing my fingers for as all the possible outcomes scare me. I feel everyday that I'll never feel this healthy and strong again.
Got my CT PET results.
Choline avid prostatic malignancy, with no evidence of extra-prostatic spread.
The doctors say this doesn't change anything with regards recommended treatment and that surgery probably won't affect the outcome, however I am certainly heading that way. Second opinion in 3 days time but its looking like Da Vinci, hormones and radiotherapy for me.
Getting near the end of the first stage of my journey. The next is to tell my kids, 2 boys, one 18 on a gap year in Australia and the other 15 at home and at school. Haven't wanted to tell them as I both wanted to know what the actual extent and prognosis might be, and I'm worried how the one that's away will cope as he is home sick already. If anyone has any words of wisdom and how they approached this dilemma I would be really happy to hear from you. Thanks so much for those who have contacted me with their experiences. My odds are not that great but I'm going for a cure which didn't even seem possible at the beginning.
Have decided on the works. The more I read the more I'm convinced that surgery will help in my case. It will be 78 days between having the PSA test and surgery on April 1st. I have no idea whether this procrastination and testing has made me worse or if I would have been better off taking hormones from day 1. Guess I'll never know. Anyway wish me luck. I'll let you know how I get on.
Well that's me done. Da Vinci on April 1st and home on the 3rd. I guess physically its not too bad. Catheter is pretty easy to get used to and the knowledge that it will be gone very soon makes it ok. One assumes continence is around the corner. Mentally its not so easy. The knowledge that none of the 3 medical professionals seen actively promoted surgery in my case coupled with the full knowledge that I have made myself 100% impotent at 52 by choice without any guarantee of a better outcome sucks. I have to convince myself daily that I made the right choice and that is really hard in the dark early hours of the morning.
One interesting side effect is that everyone assumes that the surgery has "got it" which wouldn't be the case if I'd settled for hormones and radio alone. I think I'll play along with this as whats the point going into the murky details of the unknown that is prostate cancer.
Get the clinical pathology next week which will be interesting. I am also getting as much genetic profiling on the tumour as possible carried out. Learning about PTEN and the Cosmic list etc. I figure that this information may help me in the future with new drugs (doesn't seem to be of much use now) and will also arm my two boys if, God forbid they are cursed with my faulty or missing DNA.
Now 24 days since the operation and have started on cyproterone acetate to reduce flair and am getting the path results, along with injection in 4 days time. Im dry at night but leak 4-5 times per day when straining so pads still necessary. Doing my Kegels and hope to be dry before beginning radio. My wife Ruth has been great but I'm feeling really depressed and tearful about what my life has become and what will be. It is really difficult to stay positive. Work helps. There was no nerve sparing so my penis is just a limp, leaking and useless appendage and shall forever remain so. I'm not in a good place right now but hope to be in a better state for my next update.
I received my pathology back and it was far better than they (or I) was expecting. My Gleason remained the same at 7 (4+3) which was unexpected and good. I went from T3a to T3b as there was some cancer in the seminal vessels but none in the casing, so as they are now gone so is the cancer that was within them. They took 10cm off fatty tissue from the front of the prostate where a break in the capsule was and this was also clear of cancer. Crucially he took 24 semi extended pelvic lymph node samples which were also cancer free. Although the surgeon can not guarantee clear margins around the rest of the prostate he was very upbeat about it and for the first time mentioned that magic word..."cure". With an initial PSA of 126 he was convinced that it had spread and now he is not so sure.
It is now 4 weeks since the operation. I am dry at nights and although wearing a pad am dry today and its 4pm. I do believe I will have the incontinence thing licked by next week. I am back at work and had my first hormone injection (Prostat) 2 days ago with no effects as yet. Hopefully these will be bearable. Radiation in 3-4 months time will be another thing to look forward to.
Although I am not naive enough to think I am out of the woods by any stretch, I have seen from this site just how capricious this cancer can be, I feel justified in defying the intense pressure not to have surgery. There was massive amounts of cancer in the region and a large bit of it is now in the waste bin. I hope and pray that the radio and hormones will mop any remaining cells up. In my case I feel sure I did the right thing with surgery but do not want to go through that kind of decision again for as long as I live.
I have increasingly found that my doctors at Chelsea and Westminster are merely going through the motions and with my wife and I have been self medicating through research on the net. This was not acceptable to me and I have transferred my care to The royal Marsden which so far seems 100% better. I have found a doctor who is at the top of her game and familiar with all the most up to date information coming out of Europe and the states and able to communicate it. There will be big changes in the treatment of PC in the next few years. I was happy to hear that there will be a paper out in the next weeks that will now recommend surgery for people with my initial stats. She examined my genetic biomarker tests and recommended Bracca 1 and 2 which I am waiting for the results. If proven this will also be important information for my two sons. My bloods are all holding normal except I'm a little anemic. Testosterone down to 1 ng and PSA at 0.03. I had my breast buds irradiated so hopefully wont grow man boobs. Incontinence persists in an annoyingly small way, ie just enough to not be confident without pads when going out. Otherwise so far, apart from the symptoms of the operation I have no side effects from the hormones. I will begin radiation for 7 weeks in July/August. Need to decide whether to stay on hormones for years, or as I think I will do go off after 6 months and monitor PSA. There is no actual proof the cancer has spread outside the prostatic region so maybe, just maybe I could be lucky?
PSA still undetectable (0.03) Vit D and other bloods now normal and am still slightly incontinent (one thin pad/day). Hormones don't as yet seem to be affecting me in terms of hot flushes or other symptoms but am having bouts of serious sadness every now and then which could be down to them? Doing Gym and Pilates and taking usual supplements and avoiding the wicked animal proteins as much as possible but not entirely. Still consuming large amounts of wine in the evening with dinner. Weight stable.
Will receive results of BRCA genome testing in a month or so. Apparently all sorts of cancers are more common if this is defective. Quite common in Jewish people from central/eastern Europe apparently. Genetically I'm from that part of the world but know of no Jewish ancestry. If it is defective then the knowledge of this informs future chemo treatments and is also important for the kids to get tested in the future (50/50 chance) so they can make informed lifestyle choices.
Its hard to know how this journey will end. I cling to the hope that there has been no micrometastasis and that after this horrible period I will be cured, but realistically with such a high starting PSA I realise it's unlikely. Radio will be in July/August and then I intend to go off ADT after 6 months and watch the PSA levels closely. If anyone out there can think of a better plan than this then I'm all ears.
Best of luck to one and all.
Brca 1 and 2 genomes show no abnormality which is a relief. Have had 8 sessions of Radio so far and as yet with no side effects. Continence good. So I guess I'm holding up fairly well for a bloke with no testosterone, prostate or PSA and who is irradiated daily.
Just finished 33 sessions of radio at 66Gy. I can say for me that it was very easy and with no side effects as yet apart from maybe a little tiredness. I had all of my sessions at 8.20 in the morning which was a really good way of doing it as the hospital is empty and since you are first there is never any delays and it sets up an easy early morning regime.
Since coming off the bicaglucamide I have stopped feeling weepy and am back to "normal". I'm feeling quite positive and don't dwell too much on the cancer. Two further friends in their 50's have been diagnosed in the last month. Its an epidemic!
So Ive gone through all the stages now, shock followed by fear, then intense learning and decision making and now acceptance and calm. Its good to take stock of everything and everyone you have and view it from a different perspective.
So far I'm handling Prostat very well and am having a very few warm flushes (not too hot) so if this remains the case Ill probably go the full three years. Guess Ill just be posting PSA results for the next couple of years and then see what happens.....
Latest results show extremely low testosterone levels and undetectable PSA levels. All other bloods normal. To be expected at this stage I suppose but good none the less.
Had 3rd shot of quarterly Prostat injection last week which will take me through to one year since the operation. Despite furious exercise I am putting on weight (8kg so far) and found skiing last week very sore on the muscles. Not sure what to do in April being too scared to come of the ADT and not wanting to continue with it is one big dilemma. Otherwise feeling very well under the circumstances.
WHAT TO DO?
Any suggestions welcomed. I want to quit ADT after 4 shots of Prostat (it will be one year when the last shot leaves my system). Recommendation is 3 years and yes some literature shows that there is an improvement in survival rates if you do the 3 year thing. But here's the rub:
This stuff is bad for you increasing the chance of heart disease, diabetes etc, it makes you fat and ache all over, changes your mood and all the rest of it. It also becomes resistant.
I may not even have any cancer cells in me! The operation and radio may have got the little bastards and if there are a few left are not I make them resistant? ADT is unlikely to kill them. Would I not be better off just monitoring PSA and use Avodart first and then ADT when / if I need followed by immune modulators?
I really dont know but Im wanting to get off this stuff. Im not sure that there is a "right" answer but any insights would be welcome.
PSA still undetectable. Deciding whether to go off ADT now and just wait and see or continue and put up with the effects which are currently not too bad. Conflicting views all around. Decision needs to be made by April so I'm thinking about tossing a coin! I wish I had a Nadir after the operation. Feeling well and slipping off the diet and exercise regime a little, but feeling generally very well.
PSA 126 in Jan 2014. Da Vinci RP on 1st April 2014 Path T3bNOMO, Gleason 7 (4+3) positive margins, right seminal invasion, 0 from 24 Lymph nodes involved. Immediately went on 3 monthly prostat injections and had 37 sessions of 66 GY to the prostate bed in the hope of a cure.
Recommendation was three years on Hormones but I can't find non-contradictory evidence for this so after 4 three monthly shots I've come off them.
I feel well apart from the impotence, weight gain and a little leakage which generally does not require the wearing of any pads.
My PSA remains undetectable at this point but will monitor every 8 weeks.
After the release of the results of the STAMPEDE trial which showed conclusively that docataxyl chemotherapy given at an earlier stage of metastasis prolongs time to progression I have been agonising as to whether or not to have chemo now. It will take a few more years to determine if Docataxyl prolongs life given at this stage but I dont think I can wait around for this data.
I am currently not officially metastatic and have an undetectable PSA but with my stats I don't believe that I am. It's possible but would be highly unusual. The current procedure is just wait and monitor PSA and when it starts rising to see what to do.
My gut and completely unscientific feeling is that if I had 1000 cancer cells in my body that 900 were removed by the surgeon, 90 by the radio, maybe 2 or 3 by the hormone deprivation and that I have 6-7 rogue cells that are dazed and weakened, hungry and weak and that at this stage some poison may just knock them off. The longer I delay the more they are consolidating, sending for reinforcements and improving their tactics to become an unstoppable army. I also feel that by the time my PSA starts going up their numbers will be in their hundreds again and that they will be strong and that I will be doomed by this stage.
My MDT team at the Marsden wont give me this treatment on the NHS, also the MDT team at the private LOC clinic are not recommending it basically because there is no data and not that they think that it may not benefit me. They are all aware of Dr Liebowitz but feel his reporting of successes are very selective.
Privately it will cost around £18,000 which Im probably going to do. The risks of Chemo are well documented and include death which is a worry, but given that if I am metastatic it will definitely increase my time to progression and that it may even give hope of a cure it may be worth the risk?
Well the Chemo is cancelled, not even the private clinic would take my cash. No evidence that it would do any good they all say. Who knows if it would have been of any use? After coming off the prostate for my 5th jab, I started again when assuming chemo was going to happen as the blokes on the stampede trial were also on hormones so thought I should do the same. I have come off them again. I guess I just feel that there is not enough evidence out there that 3 years is any better than 18 months and I want to get off it. They're horrible and I reckon the damage they do is under reported. Again, who really knows? Ill be back on them soon enough if my PSA starts rising.
Meanwhile asked for a CT PET scan, bone density, top and tail cameras and with my last set of bloods cholesterol and Vit D (which I'm beginning to think is more important than it seems). All this was happily performed by our wonderful NHS and am happy with all the results. My bone density has even improved in a weak area due to the amount of Calcium I've been taking in the form of Calcichew pills.
So its just wait and see now. I guess I'm in a way better place than I could have been with an opening PSA of 126. Although it is the case that most professionals don't see me making 60 I hope I can. Pomegranate and Lycopene and less protein and a little more exercise is what I do. Still drinking way too much wine. Since diagnosis 20 months ago Ive gained 10 kg, have no sex drive/life, wear a pad every day for safety reasons, have strange but not debilitating bowel movements, experience hot flashes and am generally a sadder, weaker and somehow a much older person. This has coincided with my kids deciding to stop being children and growing up and has made it a very difficult period in my life. I also know a lot more about Prostate cancer. Even reading my own coming to terms with this disease in this blog I find my then lack of knowledge disturbing. I can't believe the experts can be so divided in what is best practice. I so feel for the men just starting out in their ordeal with the fear and unknowing. No one deserves it.
Anyway I guess Ill post again if my PSA goes up (or doesn't). Best of luck all of you.
Had a consultation with the doc today. PSA is still undetectable, all other bloods are ok. We have decided that I will take 1 more shot of prostat and then stop. This will be 2 years of undetectable PSA with ADT. If my PSA remains undetectable for 3 months after stopping that is good, 6 months better and looking more like a cure, 12 months more so. Because my 24 lymph nodes were clear and CT PET scan is clear, there is, in her opinion, a chance that I am cured?! What a surprising and marvelous result that would be!
Recent research has lead me to believe that if my PsA rises at all I intend to hit it with Docataxyl and Cyber Knife (if appropriate) as it seems that secondary tumours may be more aggressive than the primaries due to mutations caused by the deprivation of testosterone and the ping pong effect between the various hotspots. I am, rightly or wrongly firmly in the camp of attacking the thing aggressively in any way you can.
Annoyingly I leak a bit I have asked to be referred to discuss slings. I'm not too bad with one thin pad a day but if it seems the operation is simple and straight forward I think I'll go for it just to be a little more normal.
For the first time since all this started I feel that this may not be a death sentence! Time will tell?
Noticed blood in stools and urine almost two years exactly after radiation. Already clear of cancer from an endoscopy and colonoscopy from earlier in the year, a cystoscopy and ultrasound has found nothing but radiation damage both in the bladder and the bowel. So I guess it's just a side effect and seems to have stopped now. Another unpleasant consequence of this disease and its treatment.
Off any meds except supplements and PSA remains undetectable. Will be checking PSA every 2 months.
Now exactly 6 months since my last prostat injection. My testosterone is back to 6.2 which is the lower end of normal and thankfully my PSA remains undetectable. Obviously this is really good news and long may it last!
One interesting development is that Ive begun taking Duloxetine. Apparently in higher doses it is used for treatment of mental disorders but in women it has been found to strengthen their pelvic floor as a side effect and improved or stopped incontinence.
I was looking at slings and AUD's but was told to try duloxetine first even though it hasn't been officially approved for men. I am now on 40mg per day (2 by 20) and although not completely dry yet there has definitely been a marked improvement and I have not noticed any side effects.
It maybe worth a try if you have an issue. I would be interested in hearing from anyone else who is/has tried it.
After Da Vinci and radiation I was incontinent using 1 thin pad a day but sometimes soaking it through. I was thinking about an AUS. I think a lot of us would agree that incontinence is worse than impotence as its a 14 hour a day hassle when impotence can be forgotten about for lengths of time.
I've since started on Duloxetine (initially at 20mg but now at 40). This drug was designed at higher dosed for treatment of depression but one side effect noticed on women was strengthening of the pelvic floor muscles (a bit like Viagra starting off as a heart medication).
Trials have not yet been done on men.
Anyway I am now for all intents and purposes dry.
Has anyone else had this experience? It should be recommended to all men in my situation but it was the first I've heard of it.
Hormone treatment stopped 10 months ago. Testosterone up to normal levels. PSA is undetectable.
Dare I hope?
Last prostat injection 10th Feb and as of Dec 1st PSA remains undetectable. Long may this last!
PSA remains undetectable.
Now 14 months since any treatment and remarkably my PSA is still undetectable.
Thought Id share this incredibly thoughtful and positive note from a fellow YANA member. Messages such as these from men going through similar experiences are just one of the meany benefits of this site. With the current state of politics in the world its wonderful to see the humanity and kindness of strangers to each other as is perfectly exemplified here. Thank you.
"XXX here from the YANA site. Just read your story and wanted to just say congratulations on your fight against a very serious situation and the apparent victory you have gained to date! It is hard to fully let one's self appreciate these victories as there is always a question about the future but you have had extraordinary results given such a serious diagnosis in the beginning. You fought the odds and did it on your own, going against the professionals who didn't seem to agree with your course of action. I love to hear success stories like yours. I hope your good fortune continues forever and your "beast" is gone forever! You have been through a lot and the rewards have been favorable making it all worth the trouble I am sure. Keep up-dating as it is an encouragement to many out here and up-dates are a good way to get your full story read."
Latest PSA still below 0.04 mg/l which is amazing coming from where I started. The one pad I use per day is normally fairly dry and my overall health and libido is back to normal, albeit 15 odd kilos added which I must work on. Crazily with no nerve sparing I have found Viagra of some benefit in that it gives me about a 20% erection which although useless at least must be supplying some blood to the tissue and benefiting my penile health. With a weekly pump and Viagra my penis doesn't look so different than it used to.
I'm currently examining a penile implant which I am minded to get given that the three doctors who categorically stated that there is no way I would make 60 at this stage appear to have been mistaken. Having sex with my wife again seems a possibility after 3 and a bit years, albeit I am apprehensive of the surgery.
I understand that I'm not out of the woods by any means but I am glad, given my advanced condition at the start that I went hard on treatment. I feel that it's saved my life or at least given me much more time to enjoy. It's not for everyone but I think it was probably the right thing for me. No regrets even with the impotence. Who knows if a less severe strategy may have also worked?
I intend on having 3 monthly PSA checks for another year and then move to 6 monthly and who knows beyond that.......
JJ's e-mail address is: woronj AT outlook.com (replace "AT" with "@")