I was seen by a "specialist" (ha.ha) (an Australian with 'attitude') at Guy's Hospital 9 months ago as my PSA had risen to 7. Without really examining me he said "It is nothing to worry about".
It has now risen to 15. I am now seeing a specialist more local to home and he now says that something should have been done 9 months ago and that there is not a lot he can do sue to other medical complications that I have.
It has climbed a further 0.5 in 2 weeks
So some idiot (he seemed to be having a bad day at the time) gives me the brush off only for it to rise to a level where they now think that they cannot do anything. I guess that is what they call "progress" (?).
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Kentish_Man
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Sorry that you lost time to fight cancer. Even more sorry when you have other conditions that hinder treatment. Perhaps if you list what you know about your cancer as well as the other conditions you have someone here may be able to offer advice. There are some great people here. It goes without saying that everyone here thinks your first doctor blew it big.
If possible, focus on the path forward. Did you have a biopsy, bone and CT scans? While your new doctor stated that your choice of treatment options is limited you may want to press him/her on that point. Ask him about any trials that you may be eligible for. Please know that there are men here with PSA readings in the hundreds and they are still going strong.
It sucks when you are in a situation where you lost valuable time. Unfortunately I know. A similar thing happened to me. In my case I do not know whom to blame, perhaps equal part doctors and me. I have a rare form that does not rase your PSA nor give positive digital exams, but is highly agressive. While I had urgency issues for years (my only symptom) the doctors thought that it was all part of getting old. So no action was taken until it was to late. Then when they caught it, it was already advanced and spread to my lymph nodes. They stated that I had it for multiple years and if it was found sooner I would have more options. Had to discuss (plead) with the surgeon to operate. Now on hormonal and radiation.
Similar thing happened to me. I feel that my cancer could have been diagnosed at least a year ago but with the GP refusing PSA tests and DRE and then believing the rise was nothing to worry about it wasn't so all this came as a shock as I was always the one going on about being on top of PSA .
I am now on hormone therapy and my PSA has gone down to 2.3 from 12.9. So far no horrendous side effects from the hormone therapy but only been on it for 3 months - just had my second injection this morning and I go to see the oncologist for treatment planning next Wednesday. I am going for Intensity Modulated Radiotherapy with the use of "seeds" to guide it. I too have pre- existing conditions which will mean most of the treatments will cause me problems I have been suffering from an overactive bladder for decades and 10 years ago I suffered from an anal fistula after an infection. I also had part of my prostate removed via TURP 12 years ago so brachytherapy is off the menu. So after researching everything I could my preferred option -proton therapy is out as I have a metal hip. All others will give me possible side effects in the overactive bladder and anal fistula so just going with Radiotherspy at our local cancer centre where, I am pleased to say the oncologist trained with the prostate cancer consultant I consulted with at The Royal Marsden.
Is the Doc you are seeing an oncologist or have you been referred to an oncologist? Have you had a MRI scan of the prostate area? Sorry too many questions but you should talk your options over with an oncologist and specialist nurse. In the meantime call a Prostate Cancer UK Nurse for advice and support The number is 0800 074 8383 and they are available Mon to Friday 9am until 6pm and on Wednesdays 9am until 8pm. They have been invaluable to me as so many mess ups have happened along the way it is so good to have them to rely on to answer questions.
Take care. Good Luck and let us know how you get on.
Me too I went to the same Drs surgery for 3 yrs saying that i had a problem but they just kept on giving me antibiotics or anti inflammatories saying it will clear up, it wasn't until i moved and change surgery Ithen spoke to another Dr who then fowarded me to the urologist that when we found the prostate cancer, luckily it was still contained but another 6 months it could have been much worse Im still a 75% chance of it returning but still Dr's should be more proactive and be held accountable.
I seem to fall foul of "Specialists". With my first and main illness (Polyarteritis Nodosa) I was seeing a, so called "Specialist" who put me on some drugs and as I was seeing him under my medical insurance made sure that he saw me fortnightly. The first thing he would do was get out a piece of paper and start writing out his invoice asking me how I was. I would tell him and he would say, "OK carry on with the treatment". After 18 months of this I was getting worse not better. So I demanded a second opinion. He eventually relented and sent me to a proper specialist in London. Withing 5 minutes I was correctly diagnosed and was told that the way I was then I had about 18 months left to live. He stopped the toxic mixture that the previous man (I hate to use the term Doctor) had pt me on. I had to wait a month for it to clear my system before I was put on Chemo for 3 months. That did not work, so they doubled the dose for a further 3 months. That did not work either. So I am now on a regime of 22,500 tablets a year. I cannot be cured, but I am certainly a lot better then I was.
Then a year ago I saw the diabetic nurse and while she was sorting out a blood test I also asked her to put a PSA check on the list. I had to remonstrate with her for a few minutes, but she put it on. The next thing I knew was that I was asked to go for another blood test as soon as possible. This I did and then I was called in by my GP. She hunted around the hospitals and the earliest was at Guy's, where I am also seen for a number of other ailments. So she thought that this was the best option. Hindsight is a wonderful thing. Knowing what I know now I would have stayed local rather then go to Guy's.
Any kind of surgery is out as I have a 75 to 80% chance of not making it through the general anaesthetic. I also have a resistance to local anaesthetics.
Last year I had a crown fitted on one of my teeth. The dentist game me the maximum amount of local that he could, but I felt everything. My body then reacted and I was so ill that I could not leave the house for four and a half months !!
As my main health professional said, "nothing is ever easy with you, but I like a challenge !" I see the Doctor in 2 weeks time about my Prostate, so will then give an up-date on what he has said/suggested for me.
When you had your dental work were you still on bisphosphonates with the chemo? I had to wait 3 months post chemo because of risk of osteonecrosis or jawbone death through bisphophonate activity.
Good morning man of Kent. I have checked your primary illness and the 'typical' drugs for it plus effects of anaesthesia of different kinds. What a complex illness! It manifests in may ways and that must make it so difficult for treating you. I suggest you contact the Royal College of Anaesthetists. RCOA.ac.UK
OK Kentish_man you have dumbfounded me now. I can only tell you of my own experiences and not speculate on your treatments. We are all so different and respond differently to everything. I am now on 2,500 tabs per annum for ca. and 1100 for diabetes so no contest or info there. I guess that with so many meds there may be interaction between one or more of them and the anaesthetics. My ca. pills mess up my BP and my blood sugars so I have had to make changes there and to my lifestyle. Check with your doc for interaction or look online by brand name or substance. I was married in Kent, Chiddingstone. Good luck. Actually my name is David. Scruffy was my dog who lasted 15 years with me.
I have researched my various drugs and decided that I should stop reading about it in case I started to think I had some of the "possible" side effects.
Interestingly enough, my niece got married this year at Chiddingstone Castle. A small world !!
I am seeing my specialist on Monday at Pembury hospital to discuss my rising PSA. Will post what he has to say next on Monday/Tuesday.
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