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What now - any advice?

User
Posted 21 December 2017 13:02:04(UTC)

I have been diagnosed with prostate cancer following TRUS biopsy on 8 December this mont. Out of 17 samples taken, 13 were cancerous and 4 clear. I was informed by my MacMillan nurse that I am in grade group 3 - Gleason score 4+3 = 7. Right side 5 out of 9 cores positive and left side 8 out of 8 cores positive.  PNI is present on the left side and extracapsular extension is not identified.

Being deaf, I find it hard to speak to anyone over the phone and it seems I am quite a number of steps behind everyone who is not deaf in trying to glean information of what my diagnosis means and how bad it is. There are various treatments that I have to try and understand in terms of their effectiveness in controlling the cancer, besides the side effects that follow from treatments.

I only received the news on Tuesday 19 December and I am now awaiting an appointment bone scan at the Royal Surrey County Hospital. Can anyone indicate to me what I may face ahead and how best to decide on the choice of treatment? I will be 69 in February 2018 but I am in otherwise good health.

User
Posted 23 December 2017 17:29:37(UTC)

My apologies as I was not aware of the rules. Thank you for letting me know and I will edit my previous post.

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User
Posted 21 December 2017 14:17:11(UTC)

Hi Rafael,
in some areas, Macmillan have volunteers who sign. You can download the toolkit from here https://prostatecanceruk...rmation/our-publications - it is well written and will give you lots of ideas about different treatments & their side effects plus some questions to ask your nurse once you have all the test results.

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


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User
Posted 21 December 2017 18:14:14(UTC)

Hello Rafael,

I am sorry you find yourself here, especially at this time of year, but welcome to the Forum.

I found it full of good advice and support since I was diagnosed earlier this year with similar Grades to you, Gleason 4+3=7, with a PSA of 9.6, bi-lateral.

Were you given a PSA result, if so it might be useful to post it here as all info helps.

I was given Hormone Therapy, HT, and Radiotherapy, RT, but many seem to be offered Radical Prostatectomy, which I sometimes think I would have preferred.

I’m sure someone who had RP will be along shortly to post on that treatment.

I had an HT implant, Zoladex, in my waist. These last for 3 months and are to reduce the size of the cancers and lower the PSA prior to treatment.

I had 2 over 6 months and started RT about halfway through. For RT I was given 20 sessions at a high dose, some are offered 37 sessions, I think this might be age related, I’m 61.

I had a bone scan and liver ultrasound as I had symptoms in these areas but was found to be clear.

It’s an awful time of year to be diagnosed. I found getting as much information as possible useful to keep occupied so I did not get anxious.

The ‘toolkit’ that Lyn mentions is excellent source of information.

Best wishes, G

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User
Posted 21 December 2017 14:17:11(UTC)

Hi Rafael,
in some areas, Macmillan have volunteers who sign. You can download the toolkit from here https://prostatecanceruk...rmation/our-publications - it is well written and will give you lots of ideas about different treatments & their side effects plus some questions to ask your nurse once you have all the test results.

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


Thanked 1 time
User
Posted 21 December 2017 18:14:14(UTC)

Hello Rafael,

I am sorry you find yourself here, especially at this time of year, but welcome to the Forum.

I found it full of good advice and support since I was diagnosed earlier this year with similar Grades to you, Gleason 4+3=7, with a PSA of 9.6, bi-lateral.

Were you given a PSA result, if so it might be useful to post it here as all info helps.

I was given Hormone Therapy, HT, and Radiotherapy, RT, but many seem to be offered Radical Prostatectomy, which I sometimes think I would have preferred.

I’m sure someone who had RP will be along shortly to post on that treatment.

I had an HT implant, Zoladex, in my waist. These last for 3 months and are to reduce the size of the cancers and lower the PSA prior to treatment.

I had 2 over 6 months and started RT about halfway through. For RT I was given 20 sessions at a high dose, some are offered 37 sessions, I think this might be age related, I’m 61.

I had a bone scan and liver ultrasound as I had symptoms in these areas but was found to be clear.

It’s an awful time of year to be diagnosed. I found getting as much information as possible useful to keep occupied so I did not get anxious.

The ‘toolkit’ that Lyn mentions is excellent source of information.

Best wishes, G

Thanked 1 time
User
Posted 21 December 2017 22:01:32(UTC)
Thank you Graham for responding. My PSA fluctuated wildly in the past 3 years between 3.2 and 5.04. However my last PSA reading before being referred for TRUS biopsy was 4.4.
My main concern is that PNI is noted on the left side of the prostate gland and that surely means the cancer has broken out of the prostate, therefore starting to spread? I am slowly recovering my composure and i will try to be sober and logical about the situation.
The festive period is a bad time to be diagnosed with cancer as hospitals will be running on "holiday mode" and appointments may take longer.
I will download and read the kit and try and understand to the best of my ability. I just hope I will not be delayed in being processed starting with bone scan through to consultation and treatment as I dread the cancer growing quickly before it can be arrested locally.
I will keep in touch with the group.
User
Posted 21 December 2017 22:10:16(UTC)

Hi Raphael,
PNI suggests a higher risk but does not necessarily mean it has broken out of the capsule - the perineural tubes grow into the prostate by some distance.

I think you are right about Christmas slowing things down - my husband was diagnosed at Christmas and we couldn't speak to anyone to get more information for 2 long weeks - but fortunately, prostate cancer is quite slow moving so a couple of extra weeks won't mean that your cancer goes galloping around.

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


User
Posted 23 December 2017 14:52:37(UTC)

Thank you for your reply. It seems to me that you are very knowledgeable about the subject and I value your response which is concise and to the point. I spent almost most of the day yesterday reading the toolkit which you recommended and I also surfed the web gleaning more information. I must admit some websites, especially those from the USA, paint a grim picture of generic survival rates when they give research details, but then I tend to ignore them on the basis of suum cuique - that no one person is the same as the other and to each his own.

I had two letters dropped into my box this morning and they brought me some good news.  A bone scan has been arranged at the Royal Surrey County Hospital for 3 January 2018. And a little better news is that I have an appointment to see the consultant at the same hospital on 9 January 2018. It is now really a wait until what the bone scan reveals before I know exactly where I stand. so I am determined to enjoy Christmas with my family for the time being.

May I wish everyone a very merry and happy Christmas.

User
Posted 23 December 2017 14:56:05(UTC)

A Merry Christmas to you to Rafael.

Just a little comment,I believe there is a site rule that says we cannot name consultants,hospitals yes but not the doctors working there.

 

You might want to edit your post to remove his name.

 

Have as good a Christmas as you can manage with this hanging over you

 

Best Wishes

 

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 23 December 2017 17:29:37(UTC)

My apologies as I was not aware of the rules. Thank you for letting me know and I will edit my previous post.

Thanked 2 times
User
Posted 24 December 2017 08:50:04(UTC)
As you have probably picked up by now, you cannot make the major decisions until the scans are all complete and the doctors know what the options are.
You'll end up with a TNM score: tumor, nodes, metastases. This describes the stage of the prostate tumor, and the extent (if any) of local spread or distant spread. The bone scan is part of that process.
You may end up with what appears to be conflicting advice from two doctors, a surgeon and an oncologist. If you do, look at both offers; look at the 'downsides' of each, and think about how they might affect you: that's very much the area where we're all unique, and with prostate cancer we often have to choose between two options which we are told have an equal chance of success.

But put it all behind you until after Christmas, as best you can!
-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx
User
Posted 29 December 2017 22:56:35(UTC)

I cant offer expert advice but last Christmas my husband was diagnosed PSA 10.8 and T3a which means it has broken through the capsule to localised tissues. Well you can imagine how we felt as he had never been ill before in his 72 years. so yes, there was a wait over Christmas and New Year but he started on Prostap injections in February and had 20 extra strength radiotherapy sessions in June. Saw the Oncologist on the 19th Dec and Psa is undetectable so yes, it fairly takes the wind out of your sails to hear these things and it will take a while to believe it fully but the treatment works.
Just let the experts do their stuff and keep as calmly positive as you can and this time next year you will probably be told your Psa is undetectable too.
I wish you all the best for next year and keep posting so we know how your getting on
Lyn

The only thing you know is you never know,so,keep trying
User
Posted 11 January 2018 12:19:24(UTC)

The festive period is now over. I underwent both bone scan and CAT 360 scan on the same day on 3rd January of this month. I received two appointments to see two different doctors at two different hospitals. As it turned out it was for consultation with one on surgical removal of the prostrate and the other is for radiotherapy.

I met the consultant on Tuesday 9th this month to discuss my condition. Oddly enough, the bone scan results were (and still are) not ready but the consultant was not too concerned about it based on both my TRUS and MRI results and I was offered a Retzius-sparing radical prostatectomy, which is a new method. After much discussions during which I asked a lot of questions, I have decided to accept this offer and I have been put on a waiting list. The consultant informed me that the waiting would be between 3 to 4 weeks, and I am amazed how quick that is.

Out of respect to the doctor in the other hospital, I will attend the meeting next Tuesday 16 January to hear about the offer of radiotherapy treatment but in all honesty my mind had already been made up during the Christmas period to go for total removal of the prostate gland. The reason for that is I feel that the source of cancer must be tackled and removed completely. Whether I have decided wisely or not is in the hands of God.

Getting prostate cancer made me feel humbled and I realise how fragile one's life is. However, I am inspired by many people who contributed to conversations on this Prostate Cancer UK website. I would not have coped strongly if it was not for reading all they - and you - have to say and advise. A very sincere and humble thank you to you all here.

I will be back.

 

He who lives, loves and knows what it means to die.   - Jiddu Krishnamurti.

 

User
Posted 11 January 2018 19:04:55(UTC)
It's good when you've made up your mind and good when it's done. Your reasoning was similar to mine i.e. remove it. Can't say I've heard of Retzius sparing will look it up. Also having a CAT scan after an MRI and the bone scan result taking so long are both different than my treatment. My bone scan result was 24hrs but the MRI result took a week. So let's hope the op is nearer 3 weeks bearing in mind a pre-op exam is needed probably more than a week before the op.
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User
Posted 12 January 2018 15:22:28(UTC)
Hi PeteOct16,

I have received email from my Macmillan nurse today confirming that my bone scan results would be awaiting me at my next meeting on Tuesday 16th. I will then know my TNM situation.
I had my MRI scan in October 2017 before TRUS biopsy on 8 Dec. The gap was due to my month long holiday in Mauritius which was booked in January 2017. When I underwent the CAT 360 scan straight after my bone scan, I was told they would take images of my groin and my chest. When I met the consultant last Tuesday 9th, he confirmed he needed to have a look at my chest as well as my groin in advance of deciding whether to offer me an operation.
I suppose some doctors have different modus operandi.
I understand my prostatectomy involves approaching the prostate from below the bladder instead of from above the bladder. I was also told that in my case the catheter will exit my body below the belly button area instead of through the urethra. I will know fully in good time when I next meet the consultant.

Regards
Rafael

He who lives loves and knows what it means to die - Jiddu Krishnamurti.

User
Posted 17 January 2018 13:03:50(UTC)

Yesterday I had an interview with the radiotherapist. I got my bone scan result and I was pleased to read a one-line report:

"Pelvic SPECT CT and whole-body planar imaging demonstrate no suspicious foci for osteoblastic bone metastases."

This news came as a huge relief to me and I now know my prostate cancer situation as T2bN0M0. I received a good outline of what radiotherapy can offer and how far it can go in the treatment of prostate cancer. The radiotherapist was very courteous and she went out of her way to answer all my questions, especially when it comes to the benefits of deciding between RP and RT. In spite of the fact that I am impressed how much RT had improved over the years and its immense contribution to cancer treatment, I still opted for RP mainly because I do not want to walk around with the source of cancer in me and the prostate gland must go. I do understand that the cancer can return elsewhere after RP, meaning I will have to undergo RT if it comes to that. However, I would rather have RT after the removal of the prostate gland than have RT with the prostate gland in place. Rightly or wrongly, I have made my decision, so God help me.

I am on waiting list for RP and I am expecting to go into surgery within 3 weeks.

Rafael.

 

He who lives, loves and knows what it means to die  -  Jiddu Krishnamurti.

User
Posted 17 January 2018 17:44:05(UTC)

Nobody would argue with you, Rafael. Soundly based thinking! I hope all goes well. Don't allow yourself to have any regrets!
AC

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User
Posted 17 January 2018 18:42:27(UTC)

I think you will be the first active member to have Retzius-sparing so we will all be watching your updates with interest Rafael. Good luck!

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


 
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