Post RP and SRT journey - oh joy

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  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #62
    Curry caca

    Hi there,

    That sounds similar to me, some days it would come out soft and hot and sometimes it would just feel hot for about the last two weeks, luckily I never had any blood.
    I had 66 Gy over 33 days which allowing for the odd weekday off when they tinkered with the machine worked out at a couple of of days over seven weeks.
    The last week or so my urine felt hot as well and a couple of days the Tena was a faint pink.
    Things did get a bit worse for a week or so after the treatment finished in terms of loose movements, intestinal pains, gas, etc, it is a bit like an oil tanker turning round, it takes a bit of time, after a couple of months I was pretty much back to normal. 
    I had some funny transitory pains but no lumps, we had an intern on call all the time to chat to if we felt the need and a consultation every other week.
    Have you the same system?
    It is unlikely this is a lymph tumour, very likely something to do with the RT, I hope it is nothing.

    Best wishes for the rest of your radiation,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #63
    Hey Georges

    Hey Georges

    I'm consistently runny and raw at the moment. No blood.

    I am on 33 days too, with weekends a few machine maintenance days off.

    I talked to the review specialist today and she said bowel plus RT irritation is the likely cause. She recommended I stop the enemas.

    Bloody IBS is returning which is a plain.

    I think that is stress as the diet is as it should be.

    One can but press on!

    C

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #64
    Hi all

    Hi all

    Quick update ...

    Stopped taking the enemas so the bowel trounle cleared up. Only side effect now is peeing every 20 mins with a little discomfort.

    Mentally not so good. People on my UK forum are talking about SRT at 9 months BCR with a non slow rise being of uncertain value (in other words a waste of time).

    Given that my onco flatly refused to discuss odds and made no effort to press for mets diagnostics. I'm kind of in a dark place thinking they are just ticking boxes on the journey to the crem.

    My friend has not got much time left and her husband and sons will have Christmas without her. Knowing that I am heading down that route is tearing me up.

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #65
    Keep the faith

    Hi there,

    I will say it again, keep the faith.
    You feel bad at the moment because of the cumulative effects of the radiation, almost everybody does, but it will feel better a month or two after it stops.
    Nothing is cut and dried yet, there is a possibility that the cancer is restricted to the prostate bed and the immediate environs* so the radiation is now killing it off.
    Even if you do have recurrence, with prostate cancer in almost all cases it will be a long time to the crem, people go on for decades with intermittent hormone therapy, they adapt and live relatively happy lives.
    It becomes a chronic disease like diabetes.
    So chin up, you could be two decades or more worth of jumps from the crem!

    Bonne chance et kenavo!

    Georges

    *Environs; immediate neighbourhood, I have always wanted to use this word since reading it in the first sentence of Finnegans Wake and now I have Laughing

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #66
    5 more left

    Cushions,

    I disagree with the opinion of your UK forum participants. SRT got its place in PCa treatments, has proven to provide high benefits and rarely we read about worse SRT outcomes. Surely it doesn't assure the end of a patient's struggle in the fight against the bandit but it provides an opportunity to get rid of cancer for good apart from debulking a great number of malignant cells diminishing the burthen of the cancer.

    I understand this newer version surrounding the judgment of a feasible salvage therapy (post a prime treatment) that considers therapies done on guessing as a waste of time. They involve luck therefore may not be worth doing it. However, with the newer image capabilities using PET machines with more specific tracers one could just radiate what has been detected and continue the process radiating each spot as they popup. In fact, even the RT done as prime can be planned providing the same results if it involves radiating only what is detected in image exams (lesser side effects) saving the clean areas in the prostate. Such is the newer way of thinking for radiation therapies in this age of better image capabilities (PET specific techniques).

    This is not what NHS follows at present so one should appeal on luck and think on the great benefits provided by SRT done in the dark. Each and every one of those ticking boxes have the bandit that is being smashed and killed. Let's cross our fingers to get all those boxes at the field of attack.

    I am sorry for your friend's family but this is the time to think and prepare your own Christmas. Where are you going to have it with your family? Will you detonate the Christmas crackers at your table?

    I wonder about the ADT component. Have you had your second shot?

    So far 32 sections are gone and the 5 left will assure that the bandit will not standup again. You are a real survivor and many will like to know about your experiences.

    Best wishes for a complete successful SRT.

    VGama

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #67
    Journal

    Hi there,

    I kept a journal from quite early in my treatment, the first shot of Firmagon at the end of March, I have just had a look at the entries post the radiation and I continued to decline for the first week but started to get better in the second after the end of the radiation so if you follow the same pattern things should start to get better for you about the beginning of November.
    So most of it is behind you and fingers crossed for you for the rest.

    Best wishes,

    Georges
     

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #68
    Hi George and Vasco

    Hi George and Vasco

    Thanks for your kind words and support. it is really appreciated.

    It is my hope that the recurrence is localised. As Vasco notes, the NHS does not to target scans before SRT. I talked to a fellow UK forum member recently who has the same surgeon and oncologist as me and he said that they told him it was a "highly educated guess".

    I am undergoing Volumetric-modulated arc therapy (VMAT) treatment. It is 33 fractions which I have been led to believe is the standard for SRT here. It appears to be a form of radation that follows the topology of the target area based on calculations made from a CAT scan. I guess the idea is to agressively focus on target areas and reducing exposure elsewhere. There is also a timed element as the projector slows down and speeds up as it passes around me.

    I think this is the best I can get on the NHS so I cannot complain. The staff have been brilliant.

    I had my second three month Triptorelin shot a few weeks before the treatment. Six months in total. The onco at the talk I attended implied this was typical for "low risk cases".

    This leads me on to what has caused me the most issues. My head space. I am hyper-analytical and (as mentioned before) a high functioning pessimist. I have had so much confusing and conflicting information thrown my way with no real effort at communication (the surgeon said I had "a lot of tumour", the path report said I had 3% volume of tumour, my BCR stats look iffy, I get told on my GP letter "less than 6% of people die from PCa", onco says six months HT is "low risk" and more). One day I think this is a positive situation, the next, "f*ck! I'll be dead in a year!".

    On top of this, the cancer has brough out a lot of buried issues which I am working through with my counsellor.

    I am sure you can understand why I get stressed.

    Luckily I am spending more time on my volunteer work helping other people which really helps keep my mind off things.

    When the SRT is done next Monday and I can breathe, I am going to set up an actionable plan to get my head out of my arse and start positive actions - gym, diet, supplements, meditation etc. I've realised it is foolish to do that now with so much going on.

    Vasco. yes you are right - I need to concentrate on my Xmas. I will be at home with wife and son, with parents and in laws a good bet. We will have a good time and for a few days I will lock the door on this damn bandit.

    Thanks again guys

    H

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #69
    Just had my end of treatment

    Just had my end of treatment review.

    A faster zap as the imaging kit was broken. As I had done so well on imaging and placement so far they were happy to go ahead based on markers alone.

    One session to go!

    Told Dr. that side effects were "OK apart from a couple of dodgy days".

    No more HT. Apparantly with my pathology (T2C and just a PSA rise) the risks outweighed the benefits. I guess I can take that as a win.

    PSA and Test check in four months.

    Aspirin and keto - he basically said "up top you but meat keto is not good." I said I would be vegan / pescetarian vegan.

    He commented that sometimes SRT does not work (I knew that!) and neither of us mentioned outcomes.

    Three rings on the bell tomorrow, a few glasses of wine and time to reflect that I have a good life and it could be a lot worse!

    Here's to the future!

    Thanks for all your support!

    P

     

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #70
    Yec'hed Mat

    Hi there,

    You need something stronger than wine; stand, clink spirit glasses filled with rocket fuel made from apples, wild plums, etc, together, say 'Yeck Head Mat'.
    Down in one, just done your first Breton toast.
    Best wishes for your last day of radiation and your life without the dread hormone therapy.

    Onwards and upwards,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #71
    Cheers Georges

    Cheers Georges

    Yup, I hoisted a few last night.

    Looking forward now - it does involve lots of gym and dieting but hey ho!

    C

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #72
    Hi all

    Hi all

    Just letting you know I rang the bell today.

    What a relief.

    Feels really odd in some ways but good in others.

    Four months now to see what happens.

    Smoke me a kipper!

    H

  • lighterwood67
    lighterwood67 Member Posts: 395 Member
    #73
    hewhositsoncushions said:

    Hi all

    Hi all

    Just letting you know I rang the bell today.

    What a relief.

    Feels really odd in some ways but good in others.

    Four months now to see what happens.

    Smoke me a kipper!

    H

    Great News

    Great news.  Always great to have positives.  Very up lifting.  Go ahead and get fired up my friend.

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #74
    Blue dots

    Hi there,

    Hopefully six months down the line all you will have to show for your radiation treatment is four blue dots.
    I am almost there after four months, I still have the odd digestive upset and I wake up in the night sometimes with this peculiar tingling in my legs.
    My abdominal hair has not regrown completely but that is partly the fault of the Firmagon.
    I found the first few weeks after the radiation stopped a bit disorientating. I felt that I was doing something about the cancer and I got into a routine.
    Do you have a follow up visit to the radiation guy after six months or so to talk about any residual effects?
    I have an emergency number to ring if anything really bad happens like my rectum falling out in the night, if it happens during the day I have to make my own way down there.
    Only kidding about the last bit of that but the odd person gets late onset proctitis, etc.

    Best wishes,

    Georges

  • VascodaGama
    VascodaGama Member Posts: 3,707 Member
    #75
    Alive and kicking

    Hi Cushions,

    A note in celebrating the end of your SRT; I recall your initial worries but here you are standing alive and kicking. I hope this was the end in your battle. Unfortunately you will have to wait more than four months to really see the fall of the Queen's chastity belt. At four months post SRT the PSA doesn't yet confirm the success. One needs to allow time for the complete end of cell's life cycle (about 6 months) to verify the effect of the radiation. Do not get nervous if the PSA doesn't match your wanted zeros at the four months mile stone. It will get there a little bit later.

    OK and here we are. Let's get drunk.

    VG   

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #76
    Yea, I am just going to have

    Yea, I am just going to have to accept the squeaky bum moments until it settles down :)

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #77
    Radiation gifts

    Hi Cushions,

    The radiation is a gift that does not stop giving for most of us.
    It gets better with time but  more than three months after my 66 Gys I still have days when things downstairs feel a bit rough.
    Nothing serious and it is on the mend.

    Best wishes,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #78
    I could not resist the joke

    I could not resist the joke as I just had my PSA and Test blood draw today for the review on the 12th. Yesterday I was very Zen about it but this morning I got right in my own head. I simply rode it out and have cheered up now. Que Sera Sera.

    Snapshot of where I am (owing to the data loss)

    Late 2016 / Early 2017 - PSA consistent at around 4 triggering referall

    Early 2017 - MRI and biopsy giving G7 (4+3)

    June 2017 - Robotic RP surgery giving:

    • G7 (4+3) N0 M0
    • Adenocarcinoma with 50% mucinous plus focus of cribriform
    • PNI but not extraprostatic PNI
    • No SVI
    • Lymh nodes clear
    • No other pathology concerns

    Early 2018 - PSA on the rise (0.16. 0.17)

    May 2018 - Recurrencee noted at 0.24 with HT/SRT planned as resolution - HT started immediately

    September / October - HT and SRT (IMRT) with very few issues other than weight gain, mood swings, ED and fatigue

    January 2019 - Recovering from treatment - more energy, Less ED but moods all over the place - swing to very dark places due to complex pathology - keep being told I have a good chance of a remission

    1st Feb - PSA / T blood draw with review in 2 weeks - will be a long wait

    Having just started reading "The Tao of Poo and the Te of Roo" I now realise I am an Eyore (George will underestand) in my mindset.

    Game on.

  • Georges Calvez
    Georges Calvez Member Posts: 547 Member
    #79
    Balls away!

    Hi H,

    I am the opposite really, my resting penis is a bit shorter than it was but from time to time it works itself up to a spontaneous part engorgement which is not bad for size, I cannot get a full erection as the nerves are cut.
    Due to the degarelix I am dead physically as far as sexual stimulation is concerned but my mind continues and it can have an erotic dream that presses the right buttons and I have an intense and painful orgasm.
    My testicles have gone from plum size to small, rotten grapes, they will never recover.
    I go for a blood test in the morning, collect my personal copy of the results in the evening, last time I saw Eeyore we had to use my copy as he had not received or could not find his copy!
    Have you read 'Zen and the art of motorcycle maintenance', One flew over the cuckoo's nest', 'The cool aid acid test', 'Catch 22', Ulysses by James Joyce to be sure, et la pire, Finnegans Wake!
    Trente points pour le dernier, dix ordinaire plus vingt bonus or a bang on the head!



    Best wishes,

    Georges

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #80
    George

    George

    I am actually feeling a lot more va va voom at the moment (did 30 minutes treadmill and some weights yesterday) but my plumbing is still mediocre. I am sure it is a lot in the head particularly at the moment as I am waiting for my results on Tuesday. I feel like Anne Boleyne waiting for the headsman at the moment. I just want a result one way or the other so I can move on. I keep flipping from hope to hell every other day.

    I have not read any of those books but they are on my bucket list. I did see the Catch 22 movie as a child (silly me) and the scene in the B17 where the lad's innards spills out still gives me flashbacks. An early reminder of our mortality.

    H

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 411 Member
    #81
    T - 3 days and I am

    T - 3 days and I am struggling a bit with negative thoughts. One minute I can see the postive options, the next I pain the worst outcome. Either one is as likely. This sucks. Even knowing the hourglass is on its last inch is better than this uncertainty,

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