Prostrate Biopsy

User

Posted 09 Nov 2016 at 15:40

Hi
It's always important to take notes at these meetings so that you can digest it all later and even speak to the prostate nurses with the facts.
It seems your consultant may have found a positive margin , meaning he knows he has left cancer inside you. A couple of tests will confirm a growth via PSA rise.
I had cancer left on my bladder , however the PSA rose so rapidly they suspect spread further than that. It was also found in my lymph nodes. I have rejected RT until I know for sure via scans early next year
Good luck

User

Posted 15 Nov 2016 at 17:27

Had a bit of a shock, my translator telephoned me to inform me that my specialist wants to see me on Thursday morning at 9am, not in his surgery but at his office, to sign for my new treatment. I am in shock because I only saw him last Wednesday and he didn't mentioned any treatment, let alone new treatment, he said I had to have a blood test to check my new PSA levels and if they were higher than expected then he would suggest what would be the next step. The blood test is booked for the 23 November and the follow up appointment is for 28 November
So why has he made this new appointment?
I am now concerned and got no sleep last night worrying about whether I still have cancer or what they have now discovered.
Really really worried, and i thought it was all going so well!!!!!

User

Posted 15 Nov 2016 at 18:43

Have you had the results from the removed prostate? If not maybe this is why you have been called in? I hope all is well and hopefully it is all okay but not much you can do apart from worry. Sometimes I think the surgeons really don't know what we are feeling and going though as the waiting is the worst part.

Edited by member 15 Nov 2016 at 18:48 | Reason: Not specified

User

Posted 17 Nov 2016 at 09:13

Saw my specialist today, and my fears have been confirmed I am now to have a course of Radiotherapy to remove any residual tumour. I think this means positive margin, but am a little confused, however they have refered me for this treatment which will last around six weeks to two months, and will start very soon.
I am really worried about my future prosepect after thinking I was doing so well, but maybe they are just being ultra careful.

User

Posted 17 Nov 2016 at 09:35

It is called adjuvant radiotherapy - having RT straight after RP as a belt & braces approach. In the UK it is usually used where there have been positive margins or where the first PSA test does not go below 0.1 or where the op suggested that it had spread locally. In your case, you are probably having it due to the question mark over the spermatic cord - it doesn't necessarilty mean you had a positive margin as well. Research in the UK on adjuvant RT has been so positive that a few hospitals (including John's) are running a trial at the moment where all men having RP are offered adjuvant RT if they want it.

You may be advised to have hormone treatment with the RT, or maybe not. That's something to ask when you go to the appointment.

The useful bits of information before you go to that next appointment - RT is given in doses called fractions - one fraction per day for usually (in England) 20 or 37 days. Each dose / fraction is measured in Grays (Gy) and men having 37 sessions would usually have 2Gy each time giving a total of 74Gy. Men having the newer dose might have 20 sessions of 3Gy which totals less Grays overall but the science means that it has almost the same cumulative effect. Whether you have 20 or 37 sessions (or something in between) does not indicate the seriousness of the situation - ie if you are recommended to have 37 sessions that doesn't mean you have worse spread than someone who only has 20.

Edited by member 17 Nov 2016 at 12:31 | Reason: Not specified

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

User

Posted 17 Nov 2016 at 10:48

Thank you so much for that information, it's really helpful. The difficulty over here in Spain is the language, I have to use the services of a translator and although I went today armed with many questions to ask the Consultant, as soon as I was told I needed this further treatment of Radiotherapy all my questions went out of the window and all I could think about was I still have the cancer.

I have complete faith in the medical team over here but the language issue does make it difficult to fully understand what is happening, so your information is so helpful to me.

I thought the translator mentioned something about residue in the seminal vesicle, but really am not sure.

I will ask all these questions when I see the therapy team as I have been informed that they all speak good English. It is a private hospital but the Spanish Health services use it for Radiotherapy treatment.

I hope you are correct about the 'belt & braces' as I have not yet had a follow up blood test to check my PSA levels since undergoing the Full RP, so they do not know what my levels are, only the results of the biopsy from the removed prostate.

Thanks again Lyn

User

Posted 17 Nov 2016 at 12:32

I know - I thought if the translator started talking about fractions and Grays you would think she had lost the plot!

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

User

Posted 17 Nov 2016 at 17:01

I have just realised that my translator did mention the possibility of seminal vesicle invasion, during my previous visit (but I obviously didn't take that in), and today my doctor did say that after consultation with colleagues, they had agreed that I should have the radiotherapy, and it would be as you said adjuvant radiotherapy.
I feel a lot happier now then when I was told earilier today except that my wife and I were coming back to the UK to see the family and all our grandchildren over Christmas and New Year but this will now have to be postponed until I have made a full recovery
Thanks again Lyn

User

Posted 17 Nov 2016 at 18:02

Or better still you could just ask the hospital whether you can start RT after new year. In the UK they like you to be fully continent from the op first, as you have to hold a full bladder during the zapping. John waited 2 years between op and RT because he was in denial that he needed it - so a delay of 6 weeks or so might be absolutely fine?

The seminal vesicles join and then become part of the spermatic cord.

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

User

Posted 28 Nov 2016 at 14:39

Two months since my RT and just had the results of my first blood test post op it was <<0.09, pleased with this, and an appointment tomorrow with the Radiology Department about the start of my adjuvant radiotherapy treatment.

I am slowly getting more control over my incontenence, I do use a lightweight Tena for men at night and a number two during the day if I am going to be active and the lightweight one if just having a lazy day, and it is staying mainly dry with just the odd occasion when it's not. This does help me to feel more confident and normal again.

Pleased with my progress, and will start asking about my libido now.

Lets hope 2017 is a good year for you all and not to many more trips to the Hospitals.

User

Posted 29 Nov 2016 at 19:35

Been to see the Radiologist today, now got to have another MRI scan followed by a CT scan and then 36 sessions of Radiotherapy, she explained all that I have to do for the CT scan and the Radiotherapy, and what food to avoid during this difficult period.

Really not looking forward to this, but hey it's so important for my life and my family.

Not looking forward to the MRI and feeling really gutted after the blood test showing my negative PSA, but just got to pick myself up and get on with it again.

Looks like my life is on hold for the next three months.

User

Posted 29 Nov 2016 at 20:11

Don't assume your life is going to be on hold. John breezed through RT, had all his appointments first thing in the morning on his way to work, never had a day off and continued with the daily gym sessions and his rugby.

Are they giving you hormones as well or just the RT?

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

User

Posted 29 Nov 2016 at 20:55

Not sure about the hormones, but my doctor seems very good, and she speaks English, she said she would have prefered this treatment to have started much earlier but doesn't know why I was not refered earlier, I said that I was badly incontent and don't think I could have done this treatment earlier, to which she agreed, but she seems to be very keen to get the MRI scan done asap and then the CT scan so she can start my treatment.
I am now under Elche Hospital which is a very nice private hospital, it was more like a walking around a posh hotel than a hospital. But its the treatment that important not the ambience.
Great to hear about John amazing that he continued with his rugby, he must have been very fit to start with.
Don't like the idea of another MRI (to make sure there is no cancer in my lympth glands, as the first MRI was over three months ago) but will just have to overcome my fears again. Then the CT scan with the enema (how I hate those enemas) and drinking water before the scan and having to hold it. The problem for me is that is is a 70 mile roundtrip each day so will have to get to the Hospital earlier than I need to drink my water at the last moment possible as she said I have to wait 30 to 45 minutes after drinking the water before the treatment. She also told me that I will have three tattoes (just small black dots) so they can get me into the same position each day of the treatment its done by lining me up with the dots and a lazer, all way over my head. Ha ha tattoes at my age!!!!
Lets hope this is all worthwhile and I can finally get rid of any cancer left behind after my RP
Thanks again Lyn

User

Posted 29 Nov 2016 at 21:52

The tattoos are tiny - I looked for John's the other day and we couldn't even find them anymore!!!! A nice ambience matters if it makes you feel secure and confident.

Yes he was quite fit - he climbed Kilimanjaro in between the RP and the RT! And look at our profile - 7 years post diagnosis / nearly 7 years post-op and 5 years after the RT/HT finished, he is undetectable (after a few wobbles) and doesn't really think about PCa very often - it is me that does all the worrying!

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

User

Posted 30 Nov 2016 at 06:41

That really is fantastic to hear and of course it's always the women that do the worrying, but to be honest although my wife thinks I am taking all this with a smile on my face and a breeze, I am really struggling inside, but we each find a way of overcoming our problems, and mine is to seem a little blaise about it all.

Thanks again it really is a help to read about others experiences, and John's is a real help to me. Good luck to you both for the future.

User

Posted 23 Feb 2017 at 07:18

Hi all
Apologise for not being on here recently but my laptop has been broken and its taken a time to get a replacment one.

So just an update I am now on session 21 of my 36 radiotherapy sessions and doing very well, apart from the effects of flatulance during the night all seems to be going well with no real side effects.

My incontenance is now completly under control and as far as that is concerned am back to normal no more pads.

Four months post op and all seems to be well just hope the results after the radiotherapy is as good as i feel

regards
Anthony

User

Posted 23 Feb 2017 at 22:43

Excellent news H

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

User

Posted 08 Mar 2017 at 11:35

I have now finished by 36 sessions of Radiotherapy and finally got a report of what my diagnosis actually was, it seems my cancer was a lot more serious than i imagined if Google translate is accurate, and i enclose the translation in English.
I dont understand all the technical details, but think i have got the gist of it.
Now the wait for six weeks to the all telling PSA test.
i have to say all the medical staff at the IMED hospital in Elche have been wonderful despite my lack of ability to speak Spanish but we always managed to understand each other.
Thankfully I have suffered very few of the after effects of the treatment I was warned about
Here is the translation.

65-year-old male patient diagnosed with Intermediate Risk prostate adenocarcinoma with Gleason 4 + 3 and cT2a-b on prostatic MR, who was operated on 9/29/2016 by Prostatectomy.
Adenocarcinoma of prostate operated on Sept 2016 pT3b Gleason 4 + 5 with surgical margin contracted R1-2
Final AP: Prostactomy adenocarcinoma with nodule of 1.4cm Gleason 4 + 5 with extracapsular extension and infiltration of seminal vesicles. Lymphatic and perineural infiltration present. Surgical edge in quotation R1-2
With these data, we propose adjuvant radiotherapy, which is why the patient is referred to our centre.

Good luck to you all out there that are still going or just starting out on this route to recovery

User

Posted 08 Mar 2017 at 15:06

Happy, te deseo lo mejor.
Estoy segura de que te tratarán bien en mi país, que es tu país.
If you ever need some help with your Spanish online, just tell me.
Un abrazo,
Lola.

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