I have just returned from the urologist having been told I have cancer. I have a palpable left side cancer, the biopsy said I was only affected on the left side. I go for a scan on the 17th of November and then see the specialist the day after. At this time he is suggesting possibly I will be best to have the prostate removed.
My mind at this time is in a whirl. After all the waiting and stress I am struggling to cope and think this may help me as well as others.
The annoying thing is I have visited my GP and had my PSA done for the past five years. It jumped from 4 to 6.11 and he said it was my prostate enlarging. No physical exam. I finally said I needed to see a urologist and had the biopsy done with the result I have cancer in my left lobe.
I will continue when I am myself and have more news.
Later: I am updating now although I have not yet had any treatment. The reason is a time has gone by and I understand more about myself. My initial reaction was fear and panic. Let's get the letters written to the family etc. It seems as if one crosses a line and reality comes and with the help of places like this one can start to address the situation in a better manner. Having now read a bit I have even guided some others and got great satisfaction from doing so.
I am now at 18th of October and yesterday I went for my scan. Drink a litre of this please the nurse said handing me a two bottles of Barium drink. Two hours later and I saw the doctor and received my DVD of the process and his wonderful words "I can not see any Metastasis" great news.
Today saw the Urologist who tells me to wait until after Christmas to have surgery (The old fashioned kind) with any luck it might be a home run. Which I will I think go for having just read an article which suggests better recovery of faculties i.e. Urine and potency.
I am still open to other thoughts but have to get him to book my place on his list next week.
An update on my status as time is going on since first diagnosis in October.
I was not happy with the way my Urologist wanted to do things, any questions I asked were pushed to one side and I decided to get a second opinion in Toulouse which is about sixty miles from home. The Doctor I saw examined me and said he thought I needed two more scans. Remember this is France and the added difficulty of the language does not help. Even if you have good French the terminology is different. Also he was a Radiologist and I am not to keen on the thought of that before surgery as I have read of difficulties with healing and radiation burning etc.
So I next visited my Local General Practitioner Doctor and he put my in touch with a Specialist at Argen a town close by my home. This Doctor was really nice and speaks English and goes to the States to keep up with new Practices . I was immediately happy with him and he does the laparoscopic procedure. He also said I needed more scans and these were quickly and efficiently arranged.
15th of December I had a radio active injection and was then put on a Scintigraphie (as called here). [This seems to be what is commonly referred to as a bone scan.] With good results (this was looking for metastasis) then 29th of December I had an MRI scan. In France you have the scan wait about fifteen minutes and the doctor in charge interviews you with the results. In my case he said it looks good and appears to be contained. He then writes a report while you wait and gives you the report, the film and a DVD of the whole thing. All in two hours.
So I now have an appointment on the 5th of January where hopefully I will get the date of my procedure which will be Laparoscopic.
All for now Happy New Year to you all and thank you so much for being there in a time of great need and stress for me and my family.
This thing goes from bad to worse.
I was supposed to go into hospital yesterday and have the operation today. I had to visit the anesthetist on Monday and also provide a urine sample. Guess what I have a bug (staphylococcus aureus [aka Golden Staph]) and a pretty bad one by all accounts. So, now on antibiotics and operation put off until 6th of March.
I first was diagnosed in October and at the moment hopefully "encapsulated " It worries me that time is passing and I am still waiting although it does not seem to worry the Doc.
Also where did I get the bug?
Keep well David.
My procedure was delayed, I had seemed to have waited for so long and the system here is you have a urine test before they let you into the Hospital. Of course mine was positive with the golden seed mrsa bug. This delayed me from the 5th of February to the 5th of March with antibiotics to clear up the problem. Had a test half way through the month and was clear!!! Tested week before and it was back again, devastated.
Turned up at the hospital and admitted, put straight onto drip and operation carried 6th of March, Friday. Had four drips up when I awoke and I guess one would be a pain killer but drips away Saturday morning and me up walking. I have had no pain at any time since the procedure. It proves to me that you need to spend the time finding "The man". I also had very little blood loss and urine was clear by Monday and certainly no lumps of tissue popping out or anything like that.
The drain was removed with my staples on Wednesday and the catheter removed Friday morning before I was discharged. Home Friday the 13th and trying to come to terms with the incontinent bit but today is Sunday and I was dry last night and I am concentrating on the exercises.
The Urologist tells me my cancer was contained and at our next meeting I will get the pathological staging. While I was in hospital he came to see me at 7.30 every morning including weekend and every evening at 7.00. I have to say I can not praise this man enough.
I will update after my visit with him in 6 weeks.
All the best David
Later: I thought it was all going so well!! Had my surgery three weeks ago today. No pain at any time and the catheter out seven days after the operation. Came away with the feeling of a kick in the backside and not easy to sit down but, apart from that not too bad.
Started with the pads and in three days was able to be dry during the night and if sitting. If I stand or walk different story, I seem to have a faulty washer on my tap as I just dribble uncontrollably. I have read some about incontinence on this site and else where but finally gloom is setting in and I am struggling to keep cheerful with my sore leg tops and cracked scrotum. One final thing though tonight in the bath my Penis looked a little more respectable. I thought it had gone on vacation. So if you feel bad about incontinence remember others do as well.
Thanks for reading my drivel I had to talk to someone about how I feel.
Visited the Specialist today 27th April and he tells me the cancer was totally contained. My PSA was virtually unreadable and I require no further treatment at this time.
I see him again in three months and if the PSA is still good I will be on six month visits for five years. I can manage that I think.
I now have to have electro stimulation for re educating my sphincter muscle. Twenty sessions!! we will see how that goes.
I am working on the incontinence side of the problem and am receiving treatment with this Electrical stimulation.
Once the probe is inserted you look at a screen and guide the pointer/curser to various places. Also follow blocks shapes ,keep between two lines which needs strong muscle control and so on. The electrical charge goes through the probe, through the muscle and out of another conneection on your leg.
I have had three treatments and have to have twenty. I have to say I am seeing good improvement but maybe it also helps that I am 9 weeks post surgery.
I thought I would share this with you all out of interest. The next bit below is a scan of the instruction sheet for the probe.
All the best David.
Caution: U.S. Federal law restricts this device to sale by or on the order of physician or other licensed practitioner.
Intended Use: The Incase Stimulation/EMG Probes are intended to provide electromyographic feedback from pelvic musculature or electrical stimulation to pelvic musculature for the purpose of rehabilitation of weak pelvic muscles and restoration of neuromuscular control during the treatment of urinary incontinence.
* Do not use this probe if the patient has an infection of the bladder or vagina or the symptoms of infection (such as itching, painful urination, sores, or fever) appear.
* Do not use this probe if the patient is pregnant, or thinks she is pregnant.
* Do not use this probe if the patient has colorectal or genitourinary cancer.
* Do not apply stimulation to a patient who has a demand pacemaker without first consulting with the patients cardiologist or internist to ensure that electrical stimulation is safe for the patient.
* Do not use this probe if the patient's anatomy would make proper probe insertion difficult or impossible.
Precautions: Do not apply stimulation for more than 30 minutes at a time. Muscle fatigue may occur with longer use. Patients should be examined for any signs of skin and mucosal irritation prior to use.
* Simultaneous connection of a patient to high frequency surgical equipment may result in burns at the stimulator electrodes and possible damage to stimulator.
* The long-term effects of stimulation have not been determined.
* Do not use in or near water.
Instructions for stimulation/EMG probe:
1 This probe is for single patient use.
2 The probe should be cleaned before its first use and in between uses. Clean by washing gently with a mild soap and water to remove any surface debris. Rinse fully with water and dry.
3 Spread a light coating of conductive lubricating gel, such as Conductivity/Lubricating Gel, on the probe to ease Insertion. Completely coat the silver rings on the probe.
4 Insert the lubricated probe into the vagina or anus (depending on which probe is used).
5 If using the probe for stimulation therapy, ensure that the stimulation level on the unit to be used is turned off. Connect the probe to the unit by inserting the connector into the appropriate port.
I have just come to the end of my physiotherapy for the incontinence issue.
The therapy was very good and if you have read my previous postings you will know it was an electrical stimulation system. I am at five months since my procedure and am now fully continent once again which is a great relief and so nice to be able to wear normal underwear rather than the tight little things one needs while dealing with pads.
I have also just visited my specialist who tells me my PSA is zero and he does not want to see me until February.
He did offer me the needle for ED but I am not ready for that yet. Anyone with any thoughts on the needle procedure please get in touch.
All for now.
I have arrived at the year since my operation to remove this thing inside me. I had the test on Monday night and it is a short wait here so got the results this lunch time Everything OK thank you Lord. As before PSA less than 0.04 which is as low as they read at my laboratory.
It made me realise that the stress does not go away I have a friend who is five years clear but every test time he has the worry that he is OK. Now for me it is the same but every six months at the moment. I understand now the courage you all show on this site and I find it very humbling. I at least have a (hopefully) contained problem but some of you guys out there are so brave. We talk as if it is a small problem and yet we are dealing with our lives.
I still have ED problems but see my specialist next week and hopefully a way forward.
Thank you Terry once again for such a wonderful place to come to relief the stress and get support.
I have just had my two year check up and my PSA remains at less than 0.001 which is very good news for me.
I am now fully continent but wear a thin pad during the day in case of coughing or straining when I do leak slightly.
I have no improvement with the ED unfortunately. I have tried the Caverject injections up to 20 mg which is as high as you can safely go with not quite the improvement to allow sex to take place. Also I find it painful to use but I do keep trying and hoping something will happen.
I made enquiries with my specialist about the Trimix used elsewhere but it is not licensed in France unfortunately. He offered an Implant but I am afraid that is not for me. I do suffer from some depression over this but know it will pass so can manage it.
As for the future I think I am fortunate to have found my cancer and get it dealt with. (This through early diagnoses because of me having regular checks of my own accord.) We lost Dennis Hopper Easy Rider in this period and I lost a close friend who was not diagnosed until to late so I give thanks for each day and if there is no sex it really is a small price to pay.
Now three years since my surgery. The PSA stays the same and life goes on.
I see the Doctor here in France every six months and he asks for progress reports each time.
Continent wise I am OK but do always wear a very thin pad for the odd drip when I lean over or lift something heavy.
Told the Doc this and he has offered me a sling which would be three days in hospital and not sounding nice. Maybe catheter again for a while so I am putting up with the drip.
ED wise nothing, tried the tablets and injections but no good.
Trimix is not licenced here so when it is I will try that but that is my last chance I think.
Again I was offered an implant but not for me.
It is good to be alive though.
Had mine in Terry's days God rest him. 2008 diagnosed operation early 2009 tested every six months for 5 years now on annual tests.
Just had it done and still good news.
I do have to wear a pad every day in case of drips but not a big deal unless I drink too much red wine.
Sad about the sex I tried all the drugs, the injections and the pump, no joy. But, I am 74 and had a good innings.
Good luck to all and remember every day is for living.
David's e-mail address is: david.mo AT hotmail.co.uk (replace "AT" with "@")