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another cancer

Posted 08 June 2015 22:22:27(UTC)

This is not my first brush with cancer. 13 years ago my wife noticed a mark on the back of my leg which turned out to be a stage 2 melanoma. I have had subsequent melanomas as have had two of my sons. The youngest is now attending a geneticist as three first degree relatives with this problem is unusual. I should have been worried but was able to take it all in my stride.However, having reached three score and ten I recently had a major spine op lasting 5 hours. I woke up to find I had been catheterised and two weeks after the op I started passing blood. It was assumed that this was an irritation caused by the catheter but sensibly my GP sent me for tests. I had kidney ultrasound, cystoscopy and ureter exam all of which proved normal though I was told my prostate was large, but this wasn't unusual for my age. As an afterthought a blood test was arranged and then all hell broke loose. The PSA was 26 and a subsequent biopsy gave a Gleason 4+3. I have been told the cancer is aggressive and the tumour is large. I have had an MRI and in a week get a bone scan.After that I meet with the team to discuss the results and possible treatment. I must confess that this is quite scary. I live in Scotland and had just bought a place in London to be near our 4 children and many grandchildren. They think I should come to London immediately but my natural instinct is to remain in my comfort zone until I see where this is going. 

Posted 09 June 2015 00:24:48(UTC)

well at three score and ten, you had a 70% chance of having prostate cancer so I think you are right not to rush into moving. Best to wait for the rest of your results and then work out whether Scotland or England is better for you in terms of treatment options - there are differences between the two nations in terms of access to certain drugs, the newest kinds of radiotherapy, etc. If you were my dad, I would probably want you to have treatment in England and then ongoing support in Scotland but that may not be practical or even lawful!!!

When they said it was 'aggressive' that didn't necessarily mean how it sounds. 'Aggressive' describes the Gleason score so yours is aggressive because you have a G7 (4+3) which is considered slightly more worrying than a 3+4 but not as serious as a 4+4, 4+5, 5+4 or 5+5. The lowest score is 3+3. G7 and above isn't usually recommended as suitable for active surveillance (AS) so you will probably be encouraged to have treatment of some kind rather than just keep an eye on it; however, there are lots of reasons why AS is the right choice for some men and you will no doubt have an opportunity to talk all the options through soon enough.

In prostate cancer, 'aggressive' doesn't necessarily mean that it has spread - the word they use to describe that is 'advanced'. It will be an anxious time for you until you have all your results but your PSA isn't scarily high and hopefully you will still be around to see your 80s or 90s. My dad was diagnosed 13 years ago and is still doing great.

If your children want to understand more about PCa, they can download or order the toolkit from this charity (link at top of the page somewhere)

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

Posted 09 June 2015 09:54:43(UTC)

Many thanks LynnEyre for your help and encouragement. I suppose it is not knowing exactly where this is all leading that is difficult. Having read many of the posts I realise how fortunate I am and how much can be done to deal with Pca. In a fortnight all will be revealed and I'll maybe come on again looking for advice. Thanks. 

Posted 09 June 2015 09:58:29(UTC)

Nigel , it is scary and you seem to have had your share of health problems. However, I believe Lyn is right in stating it is not a cause to rush into anything. My husband who is aged almost 74 was diagnosed early this year. He too had a gleason 4 + 3 at biopsy . We opted for open surgery and he coped very well with the operation and post operative period . Things are now pretty much to normal. There is certainly a lot of life after a diagnosis of Pca as the many folk on this site can vouch for. Good luck on this journey no one volunteers for. Georgina

Posted 09 June 2015 12:03:14(UTC)

My husband had a PSA of 19.7 and his Gleason score is the same as yours, he was given 3 treatments options to choose from and has just started on his treatment plan of choice.

You can always call the PCUK specialist nurses for a chat, I found them very helpful: 08000748383

All the best

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
Posted 09 June 2015 17:15:25(UTC)

Just to say hello and welcome Nigel.
Sorry you've been out through the mill but you have joined the right site for advice.
All the best

We can't control the winds - but we can adjust our sails
Posted 11 June 2015 23:17:46(UTC)
I appreciate the support and encouragement. I've ordered the tool kit and hopefully will be better prepared to deal with my options once all the tests are completed. Strange as it may seem I neither feel ill nor regard myself as being ill. Perhaps there is much more stress on my wife. We have been together since we were barely teenagers. And of course our children, adults though they are,who realise that we are actually mortal.
Posted 12 June 2015 07:41:29(UTC)

It' a frightening time for everyone but together you will get through it, just as you have before.
Stress on us wives is a definite, and your children, at whatever age they are, still remain your children don't they.

You'll get a wealth of information from the Toolkit but it is bound to also produce questions so ask away.

Best Wishes to all of you

We can't control the winds - but we can adjust our sails
Posted 09 August 2015 21:27:46(UTC)

It's now 8 weeks since I last posted and its been quite a roller coaster ride since then. I met with my urologist who informed me that the cancer was not contained within the capsule and the bone scan showed light metastatic cancer on my ribs. As such an op was no longer to be considered and he was passing me over to the Onco whom I met a few days later. He was very encouraging and gave my wife and myself  a feeling of trustworthiness and intent to help. After explaining the protocol he gave me an Rx for monthly injections on decapeptyl and an appointment for six weeks later (Aug 6th) when chemo would probably be arranged. In the meantime arrangements would be made for a CT scan of the chest abdomen and pelvis. This would ensure that none of the soft organs were involved. I think I'm reasonably philosophical about my condition and refuse to waste too much time worrying about what may happen before it happens. My wife felt that every time we met the experts it had been bad news. The waiting to see the onco whose clinic was running an hour late was difficult for my wife and when we were finally called she was in a very nervous state. Let me say at this juncture that the nursing staff in the hospital had been most kind and understanding. Unfortunately, the onco was on holiday and we were seen by his registrar, a kind and helpful young      ( they're all so young!) lady. She said that the results of the CT scan had got them all confused as there was no sign of matastatic cancer anywhere. There was a small mark on the pelvis which was probably benign. Chemo would not be started just now and the team are considering radical radiotherapy. As the urologist had considered a prostatectomy and removal of seminal vessals before the original bone scan results, I asked if this would now be considered again but was told that it is no longer possible. The Oncologist is back next week and will phone me after he has met with the relevant specialists to consider the latest results. While it all seems the best possible outcome of the most recent CT scan I am rather confused.

Posted 09 August 2015 22:24:08(UTC)

This is just a possibility: the Urologist noting escaped from capsule plus reading of bone scan referred to Oncologist. The Oncologist also noting escaped from capsule and perhaps being busy took the scan interpretation as correct so put you on HT. With CT scan being clear where next? Surgery may be ruled out because its escaped and or as you have commenced HT it can make nerve sparing more difficult. So RT combined with your HT would seem the way foward, but?


Posted 10 August 2015 08:00:37(UTC)
Hi, that 8 weeks of waiting must have been quite hard for you and and also for your wife too. It sounds like you are a calm and rational thinker which is great. When PCa breaks outside of the prostate gland itself its spread can be incredibly random, if it is still in very small amounts these can be hard to pick up on a standard CT or MRI scan. The radioactive bone scans will show brighter spots but even these can be a little misleading. Any treatment given can also shrink these spots even further, and in a relatively short space of time, if your cancer is receptive to HT.
I am hoping one of the members here who has a lot more experience and knowledge of this can elaboarte on my thinking and post a more comprehensive reply than me.
I would think another PSA test will show if the HT is really having an impact and also give a sign of the level of activity.
In the meantime waiting to hear from the Consultant Oncology before you make any further decisions, especially about moving closer to the rest of your family is probably the sensible way forward.

I wish you all the very best
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