Should have had private cover

Got told the other day by the oncologist that the pathology report on my prostate after it was removed revealed that there was some leakage before the operation I had my prostate removed 8 months ago.

If i had have known this I could have pushed for radiotherapy earlier, now of coarse my PSA is rising and im still 5 weeks away from starting the radiotherapy things aren't looking to great.

44 Replies

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  • :(

  • Don't worry, You are not alone. what kind of psa increase are you talking about, how did the scans look. Even if it has spread there are new drugs that may control it for many years , and new things coming out all the time.

  • Thanks Dan I was having a bit of a rant as it was getting me down, im having scans in 2 to 3 weeks time with radiotherapy starting in the first week of a Jan.

    My PSA doubled from 1 to 2 in 4 weeks and i feel like im getting some aches and pains.

    Cheers

    Gary

  • Crazy thing is we can imagine any ache or pain is the cancer , but usually not especially with psa 2, also please remember there can be a lot of noise in the psa, I always have a regular monitor psa at home and a send out ultrasensitive to mayo , and one in Dana in Boston, all in the same week I had a 30 in Boston a 50 on local send out to mayo and a 63 on the monitor, There was a guy on the YANA site who did a psa every day for a month, and it was never the same sometimes up one or 2 sometimes down 1 or 2 , but always in singe digits

  • I would like to know more about the fluctuations in PSA.

    Can you post

    1. the results that the guy had who took a PSA each day for a month and also

    2. the results you got by sending the same sample to different labs?

    (I understand that there are 2 different methods of getting a number for total PSA. One is the World Health Organization method, and there is another one but I forget what it is called. I dont know which one Quest uses, and I dont know which one my place (Roswell Park) uses, and have not been able to find out so far)

  • The "guy" to whom you are referring is the late Terry Herbert.

  • May we take inspiration from your trials and may you rest in peace, Terry

  • thanks.

    yananow.org/display_story.p...

    why the quotes?

  • My results from local lab sent to Mayo and done at the local lab are always different from the same sample, the ones in Boston are always a different sample,and always are different from the other 2 sometimes even in the same week.Important not to base too much on a single psa . I would have to search the yana site for the other, But I will

  • As far as I was informed each place or lab has their own scale so a 60 at one place means nothing to the 30 at the other. the only numbers that matter are a comparison between psa from the exact same lab each time. is that correct?

  • That is correct, but in my experience even those numbers can go up and down on a monthly basis

  • Here is the results, unfortunately the great advocate Terry Hebert, who was a great advocate of watch and wait has died after many years with the disease, here is his study yananow.org/PSAexperiment.s...

  • Yes yes yes. I am reading his story now. The "active surveillance" phase had become much more favored, no doubt affected by his efforts. To the extent, gone too far, that some organizations for a time recommended not doing the PSA at all. This recommendation has lost favor with all patients, and most oncologists, as a way to "prevent" overtreatment, but still is on the books, I understand.

  • Depending on Gleason scores and overall aggressiveness of the cancer it can be a good option,As many men will never die from their cancer and can avoid serious complications of Surgery, but requires what they now call active surveillance. Myself I was inoperable in 2006, so I never had that choice. An excellent book to read by one of the foremost medical oncologist specializing in Prostate Cancer is " The invasion of the prostate Snatchers" by Dr. Mark Scholtz .

  • From My own experience in my 10 plus year journey as stage 4 , some months are psa up and some have been psa down, overall I am climbing the ladder, but if we panicked on a few points rise we would not have enjoyed the 4 point drop the next month, I do agree that Chubby may need to start the adt club, but that is not so bad. My point is that I think often men change treatments too soon without repeat psa

    Dan

  • Dan, your embracing of the hills and valleys of the past ten years is nothing short of amazing. keep trekking xoxo

  • Actually, there are certain genetic strains of prostate cancer that are very aggressive but do not generate any much PSA.

    Joel

  • Small cell and Ductal (which I have) do not always raise your PSA. In fact both types are usually found not by rising PSA but by other symptoms. For this reason the cancer is usually advanced (like my was - stage 4) when it is found.

  • Gary,

    When were you diagnosed, what were your biopsy results (Gleason, number of positive cores out of how many and what % of cancer was in each positive core?

    Joel

  • Ever since I joined this group/site I was very much attracted to whatever replies posted by Dan59. His outlook is positive even under the worst circumstances and the words are very encouraging, always backed by his own experience.

    Look, what he has to say about the PSA! And also for the consolation of Chubby42!

    Thank you Dan, thank you very much. I appreciate.

    Chubby, since you have undergone prostatectomy ( RP ) why don't you give the other important findings of your post surgery pathology report such as :

    - Gleason sum score

    - Lymph node (LN ) involvement

    - Seminal vesicle involvement

    - Surgical margins

    - TNM Staging

    - Tumor burden

    - PSA before surgery

    - PSA after surgery

    - PSA now

    - Any significant PCa related symptoms observed before diagnosis and at present other than the rising PSA.

    - When diagnosed and at what age

    Hope you will receive more useful posts to look at.

    Sisira

  • Hi Sisira

    I don't have all these answers but what I do know before my prostatectomy my PSA was 7.5 my Gleeson score was 4+3 she said there was no seminal vesicle involvement ill have to check on the others.

    My PSA for 6 months was .0 then it went to 0.1 now its 0.2

    Positive margins I thought she said was negative but will have to check that as well.

    Thankyou all for replies and help.

    Chubby

  • Thank You for the kind words

  • Chubby42,

    By "leakage" I assume you mean "positive margins". It's infuriating that this kind of thing happens. Each doctor thinks to himself - my job is to do a surgery, my job is to do radiation, my job is to do testing. None of them think "my job is to cure this patient." And so no one follows up.

    I suggest that you call the radiation oncologist and ask him about getting a Lupron injection plus Casodex, right now, today! The idea is to halt the growth of the cancer immediately while waiting for the radiation to be scheduled. I don't know if ADT is routinely used with salvage radiation, but it is used when radiation is a primary therapy and it does improve the outcomes.

    Good luck.

    Alan

  • It is not acceptable for the doctors to know you had positive margins and not tell you. It's not.

  • If the adt helps to make the cancer sensitive to rt in primary therapy it should in salvage t. The old 1and 2 punch to knock the pc cold. Best of luck

  • I agree with Alan, you need therapy ASAP with a one month doubling time. Also if you go the radiation route hormone therapy attenuates radiotherapy.

    Joel

  • I had 3 months of ADT with salvage radiation. I had to insist on it.

  • It most certainly is not! My surgeon told me shortly after the surgery that there was "extra-capsular penetration." Soon I got the pathology report, which said there were micrometastases to 7 of 14 pelvic lymph nodes tested. The surgeon explained everything. I don't remember if he volunteered the report or I requested it, but it's worth getting these documents, like your scan reports, so you can see what's being said in detail, & keep a file for yourself.

    Again, it's completely unacceptable for your doctor(s) to withhold this critical information. They should tell you right away & discuss your options.

    There may be no harm done in your case. The first time I ever had a PSA test (because my doctor for many years never told me about them), my PSA was 60.7. I was 61 then, & 75 yesterday, so with a PSA of 2, you may live to a ripe old age. On the other hand, if failing to inform you & delaying further treatment caused harm, it would be time to talk with a plaintiff's medical malpractice attorney.

    You're in some kind of health plan, right? If possible, get doctors who are good communicators & caring people. It makes a huge difference. In my HMO, doctors are supposed to reply to emails within 2 working days. I have a primary physician & an oncologist who reply extremely promptly (hours or even minutes), in a very informative & helpful fashion. I had to make changes to get such good doctors.

  • Hi Neal Snyder

    I understand what your saying Ive left messages with my oncologist and never got any replies until 4 weeks later when my next appointment was.

    I suppose its part of been on NHS UK public heath system but ill be asking a lot more in a couple of weeks time.

    Cheers

  • I am not sure of how the system works in the NHS UK public health system, but I have been known to just appear at my doctor's office if I don't get back a reasonable response in a reasonable time period. You are fighting for your life, don't be shy.

    Joel

  • Hi Chubby

    Does NHS UK have patient advocates (by whatever name) within the system? Or is there an office of patient advocacy (by whatever name) outside NHS but within the government? Or is there an NGO/nonprofit? I'm just wondering if there's someone whose job is to assist patients in circumstances like yours.

    Do you think the NHS is this bad for patients in general? Assuming not all NHS oncologists treat their patients like this, do you know if they grant requests to change to a different doctor? Do you have any way of finding out other patients' opinions about individual oncologists at your hospital? I would be very uncomfortable continuing in a doctor-patient relationship with a doctor who withheld information, the way your doctor did.

    I realize it's entirely possible that none of this is helpful. Your own idea of asking a lot more questions when you have an appointment is a very good idea. I find it helps to write down my questions & put them in the order I want to ask them. And in your case, unless you know that having an email relationship with your doctor is out of the question, perhaps you'll want to ask this: "Doctor, it's a problem for me that I can't get questions answered by leaving messages. Would you be able to answer questions if I emailed them to you?"

    Best of luck! Some way or another, I hope you get the doctor-patient relationship you deserve!

    Cheers

  • Hi Neal Snyder

    I'll be asking a lot more questions and asking for copies of my records so I am clear and to make sure I heard her correctly, the problem I have is I feel the Oncologist is not very forthcoming with things nor she doesn't seem that knowledgeable as when my PSA started to rise after my last 3 monthly checkup she said she had to go away and check what the next procedure was for retesting the PSA which i new then was every month instead of 3. I also asked if the was any drugs i could take with the radiotherapy and she said she wasn't sure but I already knew there had been some successful trials with combined radiotherapy and drugs. I can and will get my hands on that trial info.

    Cheers

  • Hi Chubby,

    She's not forthcoming, she's not knowledgeable, & she's not a good communicator--how sad! I sure hope you can switch to a better oncologist.

    Neal

  • Have hope for good guidance and then check out treatment options. My report following surgery was that the prostrate wall was compromised. However, lymph nodes were negative for PC. Shortly there after my PSA went up and IMRT was recommended. Took 43 treatments and shortly after PSA was up again. Now on Lupron and Bicalutramide for over two years. Radiation resulted in damage to colon and perhaps calcium loss in hips (?). Lupron lowered the PSA for over 18 months. Took the bical for over a year and have now elected for a "break" due to fatigue and lower limb pain. Feel better, but PSA went from .01 to .17 after six months. In a do over, I would not have had the radiation. Suggest you look at the statistics and judge how they might apply to you. My approach to treatment has been to follow a fail-safe path i.e. to always have another option if the present treatment fails. I expect to return to Bicalutramide, but for the time being I am enjoying a higher level of energy. My hope is to be able to balance treatment with quality of life. I am optimistic this will work. I have to add however that my doctors tend to be bound to protocol and do not care for deviations. I accept that this disease comes with wins and losses and rejoice when days are good. My advice is be informed as best you can and understand why you make treatment choices.

  • Most of us are aware that a surgeon can screw up and do a lot of harm, but not all of us realize that the same thing can happen with radiation. If the rad onc plans the treatment incorrectly or his assistants do a sloppy job of administering it, unnecessary damage can result. So whether one is getting surgery or radiation, it's important to pick the best docs one can find.

  • Also, an injectable fluid called "SPACEoar" puts a barrier between your prostate and the bowel, making damage to the bowel less likely.

  • I don't believe that SPACEor can be used for salvage therapt, there isn't a prostate gland to separate from the colon. This is used, or should be used for primary radiation therapy.

    Joel

  • oh, i missed the sequence of treatments. wasn't thinking.

  • Hi guys,

    I had to find another urology group after I found out I was never told I had a bladder blockage. It was annotated in both my medical records and imaging results since early '13. I found out in April this year, when I wound up in the ER. I just had the catheter removed last week. We're talking almost four years of awful pain, and they had no clue. They kept feeding me samples of different meds. Nothing worked, because my prostate choked off my urethra.

    The point I'm trying to make here is this, as a physician, you are required to actually read the reports you have in hand. Just turn the page, and there it is in black and white. If that's not malpractice....So, get a copy of everything and read it, understand it, learn from it.

    B Cool, Joe

  • And keep it in your medical log for future reference.

    Joel

  • Right you are, Joel.

    Joe, you said "If that's not malpractice..." It sounds like it to me, too. Winning a malpractice judgment won't take away the harm you've suffered, but it could pay for better medical care or for things you'd enjoy. Now, I don't know where you are or what the laws are there. Where I live, you might still have a viable malpractice case. But you should consult with a medical malpractice attorney right away, to make sure the statute of limitations doesn't run out.

    In my experience, medical malpractice attorneys do not charge you while they determine whether to take your case. If they do, you'd sign a contingency fee agreement. The attorney would advance the costs for expert witnesses & other expenses. If you win, the attorney gets the expenses repaid & the percentage of the judgment you agreed to. If you lose, you owe nothing.

    As you see, the very fact that the attorney agrees to put up his or her valuable time, & pays the expenses, means he or she believes you have a winning case.

  • Chubby, sorry to hear about the psa rise, mine was rising too, you know one thing I remember them telling me was that you do not want to do the radiation too soon after surgery anyway, reason being that you want things to heal really good and get your continence back and everything working strong and stable, because radiation has a tendency to freeze everything including your recovery progress right where it is.

    personally I was not a good candidate for radiation myself because it has spread

    so I am on HT and Chemo right now been fighting this for five years.

    hang in there and fight fight fight .

  • The other comments that center around the fact that the surgeon should have told you about the "leakage" (not sure what that means) points out the fact that we all need to take PERSONAL responsibility for all of our medical care. Never rely on your doctor to be responsible, if you do you might find that you end up with unexpected and unnecessary outcomes.

    This means making a personal health log which includes getting each and every test, scan and medical note from our doctors and putting them in a log. Before you put them in the log read everything and be sure that you understand everything on the paper. Then ask, ask and ask questions.

    See my pod cast available free of charge on iTunes - Prostate Cancer Pod Cast - Cancer Health Log Keeping

    Always, always, always get all your medical records- it could save your life

    Joel

  • Thanks guys and thanks JoelT ill be asking for a copy of my records when i see the Oncologist next.

    Cheers

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