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My Journey.

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User

Posted 13 Nov 2018 at 21:39

Hi.

I have just been diagnosed (I have a Gleeson score of 7 3/4) and have joined the group to find like minded people with the same problems and delemas that I am facing.

the first one being what type of treatment am I going to go for, surgery or radiotherapy, I am not expecting to be given the answer from any one here but it will be good to read other peoples views.

Did anyone else feel a sense of relief after they were given thier results even though it wasnt what they wanted to hear, just that relief of knowing and now being able to move forward

Will leave it there for now but will post again once the news has sunk in properly and I have had time to think about things

Edited by member 21 Nov 2018 at 18:25 | Reason: More meaningful title

User

Posted 14 Nov 2018 at 08:24

Download the toolkit from this website or call the nurses on the number at the top of the page and they will send you one in the post.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Nov 2018 at 13:26

Have just returned from appointment with the nurse, decisions made and now reading to move forward.

I have decided to go down the HT/RT route as I feel that I am able to cope more with any side affects from this than I am with the side affect of RP.

have taken my first Bicalutmide tablet, as I’m sure most of you already know I will be taking these for 28days and having an injection half way through and then just the injections every 3months.

Waiting now for an appointment with the oncologist for more information on the RT and hopefully some sort of time table. The nurse has said that if it clashes with a holiday I have booked for April they may be able to postpone it.

will keep you updated on any side effects from the HT and further developments.

I hope you don’t mind my drivel but talking is my way of coping with this.

User

Posted 22 Nov 2018 at 14:43

Now that you have chosen, I hope all goes well with your treatment.

Ido4

User

Posted 08 Dec 2018 at 18:07

Fraction is the proper term for a session of RT. The dose is given in Grays (Gy). The standard dose of 2Gy is given at each of 37 fractions whereas the hypofractionated dose normally comprises 20 fractions each of about 3 Gy. That means in the latter case the total number of Gy is less but by a mathematical calculation I can't follow, because higher dosage is used the overall effect is similar.

Barry

User

Posted 08 Dec 2018 at 18:20

It is about cumulative effect. 60Gy or 66Gy over 4 weeks has the same impact as 74Gy over 7.5 weeks but with fewer side effects so is a great option for men thought to be healthy enough to cope with it. In the study, once they went over 3.5Gy per fraction, the side effects started to increase to an unacceptable level.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 08 Jan 2019 at 19:50

What a farce Bob. Are you having your PROSTAP injection tomorrow?

The nurse should not be anticipating the oncologist changing your treatment, she should have just given you the injection. It’s not in her realm to make that kind of decision.

The positives are that you are on HT and PSA is coming down. Being on HT for slightly longer before RT will possibly even be beneficial on the end.

Did you get a new appointment with the oncologist?

Ian

Ido4

User

Posted 10 May 2019 at 22:01

Yes good feeling to have got RT completed. You should now be monitored by at least PSA tests on a regular basis. If results are good the time span between tests may be increased. RT goes on working for anything up to about 2 years so you should achieve your nadir within this time frame. It is important that you continue to be monitored because sometimes some cancer cells escape the RT or are radio resistant and call for further treatment even many years later. So for a time at least your cancer journey continues.

I hope your RT serves you well and that side effects are minimal.

Barry

User

Posted 26 Jun 2019 at 18:24

Had my follow up appointment with my oncologist today. Results from my last blood test are 0.9 so the oncologist has told me I am to have blood test every 3 months and he will see me again in a year unless my PSA rises above to.

I think I am now officially in remission.

Good luck to you all with your treatments and the future

Bob

Edited by member 27 Jun 2019 at 07:36 | Reason: Not specified

User

Posted 26 Jun 2019 at 23:08

Brilliant

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Jun 2019 at 19:52

Great news.

Ido4

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User

Posted 14 Nov 2018 at 07:47

My PSA is 7.6, up from 5.7 last Septembe. The oncologist did not give me A staging figure but it is contained within the prostate he and a nurse then gave me my treatment options with the diagnosis my Wife and I the had as much time as we needed with the nurse as she explained to us the treatments and all possible side effects. She is now my point of contact and has asked if we could let her know when we have made a decisio, she is also there for any questions we may have to help make that decision

Edited by member 14 Nov 2018 at 07:51 | Reason: Not specified

User

Posted 14 Nov 2018 at 08:24

Download the toolkit from this website or call the nurses on the number at the top of the page and they will send you one in the post.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 14 Nov 2018 at 08:30

I have been given the tool kit by the nurse which I am trying to wade through at the moment. There is an awfall lot to take in at the moment

User

Posted 21 Nov 2018 at 18:33

Have had just over a week to look into the options and sit down and discuss them with my family. I am about 90% sure on the treatment I will be going with, just have a list of question to go through with the McMillan nurse at my appointment tomorrow. Will keep you posted.

After reading though a lot of posts on this forum I realise how lucky I am to have caught it at such an early stage

User

Posted 22 Nov 2018 at 13:26

Have just returned from appointment with the nurse, decisions made and now reading to move forward.

I have decided to go down the HT/RT route as I feel that I am able to cope more with any side affects from this than I am with the side affect of RP.

have taken my first Bicalutmide tablet, as I’m sure most of you already know I will be taking these for 28days and having an injection half way through and then just the injections every 3months.

will keep you updated on any side effects from the HT and further developments.

I hope you don’t mind my drivel but talking is my way of coping with this.

User

Posted 22 Nov 2018 at 14:43

Now that you have chosen, I hope all goes well with your treatment.

Ido4

User

Posted 23 Nov 2018 at 11:04

I had PSA 2.19 Gleason 3+4 =7 Staging T2 NO MO.I was offered robotic removal at first but asked if Brachytherapy was possible so spoke to a Brachytherapy Specialist and after getting more information from this site and help from other members i decided to go for Brachytherapy in September 2016.My last PSA test was in June 2017 down to 0.39 and the next one in January 2019.

I feel i have been very lucky as the PC was picked up early from a private medical not related to PC at all.If you click on my avatar you will see my journey so far.

Regards John.

User

Posted 27 Nov 2018 at 19:50

Sitting here reading through the posts on this forum I am wondering if I am normal or just plain stupid. The reason for these thoughts are that i have abspolitely no fears for the future even after reading other people’s posts on their trials and tribulations of thear treatments and side effects. But then I also have no fear of the man in the black cloak and sickle coming to get me.

I AM NOT GOING TO LET THIS THING RUIN MY LIFE.!!!!!

I talk about it to my friends and even joke about it with them for example I have asked at the golf club if I suffer from side effects from the Hormaones i.e. Hot flushes and growing boobs can I play off the ladies tee.

I suppose one of the drawbacks of the side effects is that if I do grow boobs I will probable lose my sex drive so won’t want to play with them.

sorry about all this but I do like to witter on as this also helps me deal with it also knowing that if and when things do get bad I will have you good people to come to for support.

Until my next witter thanks.

Bob

User

Posted 28 Nov 2018 at 10:01

You post as much as you like Bob. I love the odd rant too. I’m actually BORED with this cancer and it occupying my mind. I keep saying I’m more scared of not living now than dying of this whenever it happens , which is a certainty. I’m all QOL and dreading further treatment to be honest.

User

Posted 08 Dec 2018 at 13:40

Finally received my appointment with the oncologist for 8th January. Plenty of time to think about what questions I need to ask and hopefully get some sort of timetable as to when I will be starting RT.

Have appointment for Monday morning for my first HT injection so a least I will be able to stop having to remember (or in reality my wife have to remember) to take the tablets.

Do you think it would be prudent of me to have a PSA blood test before my Oncologist appointment.

Still wittering on Bob.

User

Posted 08 Dec 2018 at 16:11

I see from your post of 22nd November that you have already had a Bicalutamide tablet so have therefore started HT. The best base line PSA figure would therefore have been immediately before HT started. HT usually drops PSA quite rapidly although paradoxically it can cause an initial temporary rise, one of the reasons why Bicalutamide is sometimes prescribed to reduce this. RT should go on to lower your PSA until you reach your nadir which could be anything between 6 and 18 months or so.

Unless I missed it, I can't see you have said whether you are on the 20 or 37 fraction of RT. (I assume one of the two forms of Brachytherapy was not an option or not a preferred one).

You have a good attitude towards all this but I think are in the minority because it does make for a considerable concern for most.

Barry

User

Posted 08 Dec 2018 at 17:03

Hi Barry.

I not sure what you mean by “fraction of RT” if it is the number of times I will be having five days a week for 4 weeks.

Brachytherapy was not an option for me although after reading about it I don’t think I would have gone for it.

As for my attitude to all this. I have PCa and nothing will change that I have gone for a treatment with possible side effects that hopefully I can cope with, getting angry anxious or depressed will not help. I talk about it a lot to anyone that will listen and that helps.

Bob

User

Posted 08 Dec 2018 at 18:07

Barry

User

Posted 08 Dec 2018 at 18:20

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 08 Dec 2018 at 18:41

Lyn, so does the high dose over 4 weeks have higher risk of side effects and the only advantage is less fractions?

Cheers

Bill

User

Posted 08 Dec 2018 at 23:05

Originally Posted by: Online Community Member

Lyn, so does the high dose over 4 weeks have higher risk of side effects and the only advantage is less fractions?

Cheers
Bill

I have read Lyns post to say that there are less side effects on the lesser fractions

Bob

Edited by member 08 Dec 2018 at 23:06 | Reason: spelling

User

Posted 09 Dec 2018 at 00:19

Originally Posted by: Online Community Member

Lyn, so does the high dose over 4 weeks have higher risk of side effects and the only advantage is less fractions?

Cheers
Bill

No, the trial suggested the opposite ... less risk of side effects.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 Dec 2018 at 12:35

Had my first Prostap injection this morning by the nurse at my local surgery she automatically booked my appointment for a months time for the 3 monthly one has also book me a blood test on the same day, which happens to be the day before my Oncologist appointment, she assured me that the results would be ready for him to see.

Have also been having a bit of a to do with insurance and holiday which I won’t bore you with agin as it is all on another thread.

Basically I am just wittering on again and putting everything down so I have a reference to look back on.

Bob

User

Posted 20 Dec 2018 at 08:48

Quick update.

Took my last last Bical tablet yesterday (that’s one less think to try to remember every day) and am just over half way though the second week after having my first Prostap jab.

Have had a couple of days we’re I have felt tired and fallen asleep in the chair but other days have felt full of life. Not sure if this is the Hormones or the fact that it is dark and miserable out side

Fortunately I have got my dog and golf to give me a reason to get up and get on with it.

Just a short witter this time.

Bob

Edited by member 20 Dec 2018 at 09:23 | Reason: Not specified

User

Posted 08 Jan 2019 at 18:58

Last two days have been days of fairly pointless appointments.
First one yesterday was with the nurse at my GP surgery for my Prostap injection, when I told her that I had an appointment with the oncologist today she said that she wanted to delay the injection until after the appointment to ensure that the oncologist wanted to proceed with the HT. seemed pointless to delay it to me but as it was only for two days I agreed, as she said if he did say he wanted to stop the HT she wouldn’t be able to take it away. I did get her to take a blood test so I would have the results today.

Well today was a bit of a farce got to Hospital in plenty of time to ensure I was able to park got to the oncology department with 20 minutes to spare. Finally got called in over an hour later only to be told that my oncologist had been called away on urgent business and I would have to see a substitute.
She just went over a lot of details that I had been over with numerous other doctors.
She didn’t seem to have much idea of my situation as she said that I would be having 37 fractions when I have been to that I would be getting 20. To sum it up she just said that I was no logged onto the system for RT and I would have to have another appointment with my oncologist to sign the consent forms along with other appointments in preparation for my art.

One good thing from all this is my PSA has dropped from 7.5 to 2.8 on the HT.

End of witter

Bob

Edited by member 08 Jan 2019 at 18:59 | Reason: Not specified

User

Posted 08 Jan 2019 at 19:50

What a farce Bob. Are you having your PROSTAP injection tomorrow?

The nurse should not be anticipating the oncologist changing your treatment, she should have just given you the injection. It’s not in her realm to make that kind of decision.

The positives are that you are on HT and PSA is coming down. Being on HT for slightly longer before RT will possibly even be beneficial on the end.

Did you get a new appointment with the oncologist?

Ian

Ido4

User

Posted 08 Jan 2019 at 20:04

Originally Posted by: Online Community Member

What a farce Bob. Are you having your PROSTAP injection tomorrow?

The nurse should not be anticipating the oncologist changing your treatment, she should have just given you the injection. It’s not in her realm to make that kind of decision.

The positives are that you are on HT and PSA is coming down. Being on HT for slightly longer before RT will possibly even be beneficial on the end.

Did you get a new appointment with the oncologist?

Ian

Yes i am having my Prostap jab tomorrow. on the plus side i got the oncologist to give me a note for the nurse to give me the flu jab as it was refused a couple of weeks ago due to me not being on active treatment.

will hav to wait for the hospital to get back to me with my new appointment.

Bob

User

Posted 15 Mar 2019 at 15:32

First contact with Radio Therapy today given program for treatment and told what will I will need to go through each day. I will be having 20 fractions.

CT scan next Thursday then all ready for treatment to start on 10th April.

At last things are moving forward

User

Posted 08 Apr 2019 at 16:54

Had my CT scan and Tatoos last week today I saw my oncologist for the first and probably the last time. The result from the blood test is down to 1.8.

The consultant has said that I will not need to have any more hormone injections after RT so hopefully that will be it for me apart for the 3 monthly check

User

Posted 09 Apr 2019 at 13:03

Great news.

User

Posted 09 Apr 2019 at 14:30

Good luck with the RT, Bob

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 10 May 2019 at 14:14

I am now nearing the end of my journey. Today i finished my RT and rang the bell. RT was a bit of a trial at times making sure that you had enough fluid in your bladder but not that much that you cant hold it. I had problems with both, having yo sit on the naughty chair with a cup of water and having to jump off the bed just as the scanner was about to start. The nurses were brilliant though and it was never a problem and they only had words of encouragement. To be honest i don't think i could have done it without them.the camaraderie in the waiting room was great to start we were a group of about 5 who had the same time appointments every day and we used each other to bounce off any problems and side effect. I found ringing thr bell quite emotional as i thought of my brother who never made it that far.

Strange as it sounds i think i am going to miss those early mornings

Next step oncologist appointment 26th June

User

Posted 10 May 2019 at 22:01

I hope your RT serves you well and that side effects are minimal.

Barry

User

Posted 26 Jun 2019 at 18:24

I think I am now officially in remission.

Good luck to you all with your treatments and the future

Bob

Edited by member 27 Jun 2019 at 07:36 | Reason: Not specified

User

Posted 26 Jun 2019 at 23:08

Brilliant

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Jun 2019 at 19:52

Great news.

Ido4

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