Treatments

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I know this is probably the most asked question, but it is so difficult, probably the biggest decision you need to make. I was diagnosed with prostate cancer (Gleason 3+4, grade group 2) T2c/NO (localised) CPG2 (PSA 8.8), a few weeks ago and I am in turmoil trying to decide on the best treatment. I know it’s an individual’s choice, but it’s all that has been on my mind over Christmas and new year and the more I read the more confused I feel. I would be appreciative if you do have any experience or guidance apart from internet links, I think I’ve been to most?

I have had frequency/urgency to pee and up to 5/6 times/night most of my life (20’s), and had numerous investigations over the years, second biopsy in 3 years and first cancer diagnosis. I have also been on tamsulosin for quite a while, although not prescribed for my prostate, but to help me pee more, and lesser at night. I am 65 years old, thought I was healthy and hoped to get into my 80’s, also a sex life is still important to us, but you read so many stories, where that just ends following treatment?

Another thing I would like some advice on, is the meeting with the urologist, following diagnosis, is this pressured into making a decision there and then on the day, it probably isn’t but I feel under pressure not to waste anybody’s precious time or fall out of the system.

During the meeting to be told I have cancer, I was informed that an active treatment, should be my only route, not monitoring, and seemed like surgery was the most recommended route. I asked if there were any other routes (HIFU/cryotherapy/NanoKnife/proton (unaffordable)), but was told they are ineffective, only surgery would totally clear the cancer, no disrespect to the devoted professionals, but that’s how I interpreted it anyway.

It is so overwhelming, if anybody has the time, any guidance would be appreciated.

  • Hi mate I think i will soon be in the same situation as you and we are similar ages so I no exactly what your going through this forum seems bloody great and I'm sure we will get some good advice 

  • Good afternoon.

    I have been in the same situation, although, in the end radiotherapy was the only option for me (locally or regionally advanced, with one lymph node affected), so that's what I am currently having.

    However, when researching this, I found the following link:

    https://pmc.ncbi.nlm.nih.gov/articles/PMC7475640/#:~:text=Survival%20based%20on%20treatment%20modality,0.905;%20P=0.004).

    This is from the US Government's National Library of Medicine, a part of their National Institute of Health, which I grade as more knowledgeable than Fred down the pub.

    I have no medical qualification, and do not understand quite a bit of the detail here, but these paragraph's caught my eye:

    "Survival based on treatment modality

    In the surgery group, prostate cancer was the main cause of death in 23 patients (1.0%), whereas 142 patients died of other causes (5.9%). The 5- and 10-year CSS were 99.6 and 98.4%, respectively, and the 5- and 10-year OS were 96.8 and 89.6%, respectively.

    In the radiotherapy group, there were 20 deaths due to prostate cancer (0.8%), compared to 163 patients (6.8%) who died of other causes. The 5-year CSS was 99.8%, and the 10-year CSS was 98.1%. The 5- and 10-year OS were 97.2 and 84.3%, respectively."

    I separated the quote into 2 paragraphs so that I could more easily see the figures. CSS seems to mean "Cancer Specific Survival" - you are perfectly entitled to croak from something else*. You will see immediately that the figures are almost exactly the same.

    For me, then, the question revolved around the side effects. Again, for me, I would have chosen radiotherapy in the end even if I had been offered surgery.

    From all the checking I could do, these figures appear correct.

    Two of the other members of this forum,   and  have much more experience at this, and will be likely to add their own thoughts.

    I really hope I am right.

    Steve

    * I suspect that my own driving will get me

  • Hi Edz

    I must admit I would be concerned if I was told that surgery was the only option to get rid of the cancer and it's only a T2.

    Radiotherapy is Def another option unless your urinary problem could cause issues.

    Your stats are low so u have time, either consider changing hospital or getting a second opinion privately.

    I get the feeling that you're not that keen on surgery?

    Also see what others say

    Best wishes 

    Steve 

  • Good Evening  

    Another warm welcome to the Macmillan Online community - although I am sorry to find you joining our "exclusive" club! I am Brian one of the Community Champions on the group and yes, I have Prostate Cancer.

    Your question has been asked by many and as we are all different I don't have a standard answer BUT with the information you have given us you will find yourself on a "curative pathway", the choice of which is yours.

    My standard advice is to get a pen and paper (I am old world) and write down the pros and cons of the treatments available to you and how the treatments and side effects would affect YOU. Use trusted sources for your information, Macmillan, Prostate Cancer UK, Cancer Research UK and members of this Community (not Dr Google!).

    Remembering we are not medically qualified I would suggest you could have - Surgery to Remove, Radiotherapy, Radiotherapy and Hormone Therapy and Brachytherapy. The 4 routes mentioned in your post:

    (HIFU/cryotherapy/NanoKnife/proton

    are only available at at few locations in the UK or you can pay private for them.

    To start you off here's our guides to Prostate SurgeryRadiotherapy and Hormone Therapy and Radiotherapy and Brachytherapy

    If you click on Community member's names or avatar's you can read their profiles where they have detailed their personal journey.

    I do hope the above helps. Feel free to ask any questions  - nothing is too trivial. 

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Good evening Steve  and welcome  . Steve, there is a more up to date article on overall survival but this is only one element in deciding what treatment might be most suitable. Have a look at 

    https://www.nejm.org/doi/full/10.1056/NEJMoa2214122#:~:text=(Table%20S5).-,Primary%20Outcome,Table%201%20and%20Figure%202A).

    There is a cautionary note at the end saying that treatments and more importantly diagnosis have improved considerably over recent years.

    I think more emphasis should be placed on short and long term side effects of the different treatments and PCUK have produced an informative document which summarises these. In particular look at the Treatment Pathway narrative in section 2.

    https://prostatecanceruk.org/about-us/projects/best-practice-pathway/

    In this document late risks of surgery are quoted as.....

    Assuming there are no significant perioperative complications, urinary incontinence and erectile dysfunction
    represent the two main problems faced by men after radical prostatectomy.
    Urinary incontinence is present immediately on catheter removal and is at its worst in the first two months
    after radical prostatectomy, followed by gradual improvement over time. Pelvic floor exercises are thought to
    be important in speeding up continence recovery after radical prostatectomy30, although there is limited
    evidence to support improved incontinence outcomes in men who begin pelvic floor muscle strengthening
    prior to prostatectomy. Nevertheless, teaching men the correct technique of pelvic floor exercises prior to
    surgery can help them to understand the aims of the exercise and assist in functional use of the pelvic floor
    area.
    Erectile dysfunction can affect as many as 80% of men following a prostatectomy31, with age, pre-operative
    erectile function and constitutional risk factors, such as diabetes, smoking and heart disease as the key
    predictors for this side-effect. It is usually within the first few months following surgery that the loss of
    spontaneous erections and subsequent damage to cavernous tissue through lack of oxygenation to the
    tissue occur32
    .
    Where possible, nerve-sparing prostatectomy should be used to maximise the chance of preserving erectile
    function.
    It is important to discuss the full impact of surgery with men and assess their pre-surgical baseline function
    along with co-morbidities, medications and lifestyle to determine how this may affect current sexual function
    and likely post-operative penile rehabilitation in order to successfully manage the patient’s (and partner’s)
    expectations and recovery goals32.

    A similar analysis has been given for each of the different treatments.

    I know you have said you don't want internet links but these are the only way you can get comparative information.

    To answer your question about having to make an immediate decision when you see the oncologist - no, you should ask to speak to a surgeon and to a specialist in Brachytherapy and Radiotherapy so that you can make an informed decision. The thing to remember though is that each of the experts tend to promote their own specialty.