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User
Posted 28 Jun 2019 at 14:38

Hello


My husband has just this morning been diagnosed with prostate cancer. The all important numbers are 


Age 55


PSA 3.5


Gleason score right 3 + 4 = 7.   5%  Left. 4 + 5 = 9   92%


Staging T3b No mx


He is having a bone scan due to the high Gleason score.


The plan is for discussion following bone scan at MDT.


We are told it's curable and treatment will likely be removal of prostate or hormone therapy and radiotherapy. At the moment my husband prefers the latter option but we will obviously take our time to decide.


I would welcome your thoughts, to be honest the diagnosis was expected but a Gleason score of 9 has knocked us! 


Ally 


 

User
Posted 28 Jun 2019 at 16:29

Ally,


Sorry you're here, but the support here is excellent.


Until you finish your diagnosis (bone scan), it's difficult to talk about treatment options, and you need to hear what the MDT recommends, which might well be for you to chose the path you want to follow based on what factors are important to you - often the success rate of very different paths are pretty identical, and you need to consider things like which side effects concern you most, duration of the treatment, time required off work, etc.


What you should do now is to order the Toolkit. You can download it, but it's really useful to have the physical folder with all the publications, so I suggest you order that. You can take your time looking through that while you wait for your next appointment, and of course you can ask us absolutely anything here, and/or talk with the nurses on the number at the top of this page.


If you happen to be in the Reading, Berks area, the Reading Prostate Cancer Support Group will have a manned information stand in Broad Street tomorrow (Saturday 29th June) outside Marks & Spencer from 10am to 4pm - do pop along for a chat and we'd be very happy to talk with you.

User
Posted 28 Jun 2019 at 16:49

Ally


i was 46 when I was diagnosed - T3aN0M0 Gleason 7.  I had my robotic prostatectomy in Reading.  Post operative pathology was T3bN0M0 Gleason 4+5 = 9.


Since then, I’ve had salvage radiotherapy and I’m currently on hormone treatment.Oncologist is working with curative intent.  My PSA is currently <0.006, so I might be cured but we’ll have to see how PSA behaves once I’ve finished HT.


There are men on here with Gleason 9 who have been living with their diagnosis for ten years or so.  Gleason 9 is frightening but their stories give me hope.  I’m only 48 now and I’ve got two kids so lots to live for.


Ulsterman

User
Posted 29 Jun 2019 at 08:22

Ally,


There's an excellent Macmillan guide on telling children about adult cancer.


http://be.macmillan.org.uk/Downloads/CancerInformation/ChildrenAndYoungPeople/MAC5766TalkingtochildrenE2.pdf


You will probably find it in a Macmillan cancer care centre at a hospital, and possibly a local library too.

User
Posted 29 Jun 2019 at 09:06

Hi Ally


we only told our (adult) children after the PSA test came in at 25. I promised them that we’d always be honest with them, even when it’s been hard to do so. I think the wish to protect them is so strong and understandable. I’m very surprise that the consultant said the slow flow was not related to your husband’s illness. That doesn’t make sense to me in the slightest, especially as an enlarged prostate can cause just that issue. 


I hope you managed to tell them, they will need your support and they will also give you support, our girls have been wonderful throughout John’s illness.


love Devonmaid xx 

User
Posted 29 Jun 2019 at 10:44

I don't have children, but I'm a carer for my parents, and I had to think how and when to tell them. I decided I could hide it well for a while, so I waited until I had the full diagnosis and in that period I fully educated myself about all relevant aspects of PCa. This meant that when I told them, I could give them an indication of my prognosis, and I could answer pretty much any question they might ask.


In the event, they were quite stunned and didn't ask anything, similarly to what you woild expect when told you have caner, except they had no clue that was coming at all. This actually meant they didn't take in much of what I said, so I made it clear during the following week I was very happy to keep talking about it, so they felt free to ask me more quedtions, which they did.


Some aspects of that will be similar when you tell your children. They won't take it all in first time, and you will need to cover it again in subsequent conversations - make it really clear you expect them to come and ask more about it. Chances are, with 4 children and different ages, they'll handle it differently and want different levels of information at different times.


It's not easy, but as that booklet makes clear, hiding it will cause more problems - hiding something like that from children will fail because they far too good at picking up there's something going on that they're being excluded from, and can leap to all sorts of bad assumptions.


So good luck. The biggest takeaway from telling my parents was that telling them is not the once-off event I had imagined, but an ongoing process.

User
Posted 15 Nov 2019 at 22:47
Well things have moved on from my last post.
Sean is having three monthly prostap injections. The next one is to be given at our GP's surgery.
He has just had the fourth of six sessions of chemotherapy, last one on Christmas Eve. The first two sessions were a bit rough, an overnight stay in hospital and an allergic reaction. Things have settled down and sessions three and four have been fine. He feels out of sorts days 3-7. His white blood cell count drops dramatically, so we are being extra careful. PSA after the third session was 0.22. I'm guessing this is good.

CT scan to follow after last session. We will be referred to radiotherapy oncologist mid January, she has recommended HDR brachytherapy followed by 23 fractions of EBRT.

No mets but one lymph node, nearest to the prostate may be affected, they can't be sure, this causes me a lot of worry.
User
Posted 21 Dec 2019 at 23:03
Yep - if it looks unchanged, it is more likely to be benign.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 28 Jun 2019 at 16:29

Ally,


Sorry you're here, but the support here is excellent.


Until you finish your diagnosis (bone scan), it's difficult to talk about treatment options, and you need to hear what the MDT recommends, which might well be for you to chose the path you want to follow based on what factors are important to you - often the success rate of very different paths are pretty identical, and you need to consider things like which side effects concern you most, duration of the treatment, time required off work, etc.


What you should do now is to order the Toolkit. You can download it, but it's really useful to have the physical folder with all the publications, so I suggest you order that. You can take your time looking through that while you wait for your next appointment, and of course you can ask us absolutely anything here, and/or talk with the nurses on the number at the top of this page.


If you happen to be in the Reading, Berks area, the Reading Prostate Cancer Support Group will have a manned information stand in Broad Street tomorrow (Saturday 29th June) outside Marks & Spencer from 10am to 4pm - do pop along for a chat and we'd be very happy to talk with you.

User
Posted 28 Jun 2019 at 16:49

Ally


i was 46 when I was diagnosed - T3aN0M0 Gleason 7.  I had my robotic prostatectomy in Reading.  Post operative pathology was T3bN0M0 Gleason 4+5 = 9.


Since then, I’ve had salvage radiotherapy and I’m currently on hormone treatment.Oncologist is working with curative intent.  My PSA is currently <0.006, so I might be cured but we’ll have to see how PSA behaves once I’ve finished HT.


There are men on here with Gleason 9 who have been living with their diagnosis for ten years or so.  Gleason 9 is frightening but their stories give me hope.  I’m only 48 now and I’ve got two kids so lots to live for.


Ulsterman

User
Posted 28 Jun 2019 at 17:23
Thank you for the replies.

I have ordered the paper copy of the Toolkit. The hospital have been excellent so far, we have a specialist nurse who we were introduced to today.
We are in West Yorkshire so nowhere near Reading but thank you for the information. I have been reading the forums over the last few weeks and found the information excellent, I had some idea what the Consultant was talking about this morning. Just hanging onto his words "It's curable" at the moment whilst knowing it's just the beginning of a journey

Ally
User
Posted 28 Jun 2019 at 21:56

Hi Ally 


hearing the words “curable” is wonderful. Next steps are tough. I just wanted to say that even those with incurable  G10 diagnosis can still be ok. My hubby was diagnosed at the end of 2010 with the incurable G10 diagnosis and he is still fighting. You have so much on your side, hoping things go well for you.


Devonmaid xxx


 

User
Posted 29 Jun 2019 at 08:05
Good morning Devonmaid, thank you for your reply.

We have a difficult day today. We have four children, two still at home, two live away and are returning home for the weekend. We need to tell them about the diagnosis. They have no idea my husband has been having tests so we know how hard it is going to be.

Yesterday the Consultant asked my husband about his family history, any prostate cancer or breast cancer. My husband was adopted so we have no family history, thank goodness he decided to get checked out when he noticed his flow was not as strong as it was, although the Consultant said that's unrelated to his prostate it led to his diagnosis

Ally
User
Posted 29 Jun 2019 at 08:22

Ally,


There's an excellent Macmillan guide on telling children about adult cancer.


http://be.macmillan.org.uk/Downloads/CancerInformation/ChildrenAndYoungPeople/MAC5766TalkingtochildrenE2.pdf


You will probably find it in a Macmillan cancer care centre at a hospital, and possibly a local library too.

User
Posted 29 Jun 2019 at 09:06

Hi Ally


we only told our (adult) children after the PSA test came in at 25. I promised them that we’d always be honest with them, even when it’s been hard to do so. I think the wish to protect them is so strong and understandable. I’m very surprise that the consultant said the slow flow was not related to your husband’s illness. That doesn’t make sense to me in the slightest, especially as an enlarged prostate can cause just that issue. 


I hope you managed to tell them, they will need your support and they will also give you support, our girls have been wonderful throughout John’s illness.


love Devonmaid xx 

User
Posted 29 Jun 2019 at 09:26
Thank you Andy62 I have this publication at work (school) and had forgotten all about it. I've just read the online version and shared some of it with my husband. It is excellent.

Devonmaid we too were surprised at what the Consultant said. We are sure this is what he said but maybe in our shocked state we misunderstood. I'll ask next time we have an appointment because I want to make sure our boys are given as much information as they need to make informed choices about their own health.

Ally
User
Posted 29 Jun 2019 at 10:44

I don't have children, but I'm a carer for my parents, and I had to think how and when to tell them. I decided I could hide it well for a while, so I waited until I had the full diagnosis and in that period I fully educated myself about all relevant aspects of PCa. This meant that when I told them, I could give them an indication of my prognosis, and I could answer pretty much any question they might ask.


In the event, they were quite stunned and didn't ask anything, similarly to what you woild expect when told you have caner, except they had no clue that was coming at all. This actually meant they didn't take in much of what I said, so I made it clear during the following week I was very happy to keep talking about it, so they felt free to ask me more quedtions, which they did.


Some aspects of that will be similar when you tell your children. They won't take it all in first time, and you will need to cover it again in subsequent conversations - make it really clear you expect them to come and ask more about it. Chances are, with 4 children and different ages, they'll handle it differently and want different levels of information at different times.


It's not easy, but as that booklet makes clear, hiding it will cause more problems - hiding something like that from children will fail because they far too good at picking up there's something going on that they're being excluded from, and can leap to all sorts of bad assumptions.


So good luck. The biggest takeaway from telling my parents was that telling them is not the once-off event I had imagined, but an ongoing process.

User
Posted 23 Jul 2019 at 16:17

Things have moved on a little since my last post. Our children have been informed and are doing okay. 


AAfter the MDT meeting the Gleason was downgraded from 9 to 8. The bone scan showed a speck on my husbands left foot and ankle. He has been receiving physio on his foot due to having plantar fasciitis and recently knocked his toe enough to blacken the nail and it subsequently fell  off. Anyway we were sent straight off for an X-ray and have not been called back since. He also had a CT scan. 


The surgeon at the MDT meeting ruled out removing the prostate as he felt he would not be able to remove all the cancer. My husband is now on Bicalutamide and has been for 3 weeks, no side affects to date. We have a meeting with the Oncologist on the 12 August. The stampede trial has been mentioned along with a shot of chemotherapy and then radiotherapy.


On a practical level we have given our diet an overhaul and due to this my husband has lost nearly a stone in the last month or so, he was just in the obese category and friends have commented how well he is looking! He has also been told no alcohol so is spending time testing out alcohol free beers! He has been amazing in all of this having a sense of humour is definitely helping.


 

User
Posted 23 Jul 2019 at 17:57

Is the no alcohol because of the drugs he's on or weight or other?  


I stopped drinking alcohol from the moment I was diagnosed to when my operation healed, about 6 months.  I thought it did me no good and might aggravate my condition, and it made me anxious in the night.  Being sober kept me stable.   I drank quite a bit before, a bottle of wine in a night sometimes followed by a bottle of beer.  We don't go to the pub so it was at home 3 nights a week.  My sister died of alcoholism so I believed the 3 nights a week regime proved I could stop.  It isn't certain you can stop unless you do.


When we went out I had sparkling water and sometimes the Belvoir fruit drink, fancy non-alcohol cocktail or a coffee.   I didn't want non-alcohol beer in case it made me want stronger beer. 


Pre-op I lost 4kg in 2 months although my BMI is usually at the top of normal.  I've put back 2kg at 86kg.


Now I've cut my drinking right back to never more than 2 nights a week and 2 bottles of beer limit.  Firm targets let you know you're not slipping.   Even that small amount gives me a general anxious feeling in the night without me knowing what it's about usually.


I used to think not drinking would be torture but I found it fairly easy when I felt I had to.  The doctor didn't tell me to stop either.


Just some thoughts. All the best.


 

User
Posted 23 Jul 2019 at 18:54

Hello  and thanks for the reply. The urologist asked my husband if he drank and told him not to due to the drug he's on, although I have read of others on the same still enjoying a drink. He's in a group and enjoys a drink when they have a gig.


He likes craft beers and has found a couple of acceptable no alcohol alternatives. He doesn't want to drink pop on a night out, but will have the odd soda and lime. We don't drink at home, so that's not really an issue for us. 


Allly 

User
Posted 15 Nov 2019 at 22:47
Well things have moved on from my last post.
Sean is having three monthly prostap injections. The next one is to be given at our GP's surgery.
He has just had the fourth of six sessions of chemotherapy, last one on Christmas Eve. The first two sessions were a bit rough, an overnight stay in hospital and an allergic reaction. Things have settled down and sessions three and four have been fine. He feels out of sorts days 3-7. His white blood cell count drops dramatically, so we are being extra careful. PSA after the third session was 0.22. I'm guessing this is good.

CT scan to follow after last session. We will be referred to radiotherapy oncologist mid January, she has recommended HDR brachytherapy followed by 23 fractions of EBRT.

No mets but one lymph node, nearest to the prostate may be affected, they can't be sure, this causes me a lot of worry.
User
Posted 16 Nov 2019 at 03:08

Getting the Full Monty then. Hopefully, the RT can include affected lymph node.


Hope all goes well.

Edited by member 16 Nov 2019 at 03:37  | Reason: spelling

Barry
User
Posted 16 Nov 2019 at 14:42

Sounds like they are on it. Good luck with the final 2 chemo sssions.


 

Ido4

User
Posted 21 Dec 2019 at 22:19
Hello
Last chemotherapy session next Tuesday. CT scan booked for 18/1. The Oncologist wants to check the suspect lymph node. It's the one located closest to the prostate. Am I right in thiinking that if it is cancerous it will have shrunk due to the HT and chemotherapy and if it's not cancer it will look no different than it did on the first scan?
Any help and advice much appreciated

Ally
User
Posted 21 Dec 2019 at 23:03
Yep - if it looks unchanged, it is more likely to be benign.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 28 Jan 2020 at 18:25

Another update


First appointment since chemo finished. PSA 0.1 CT scan in Doctors words shows "nothing much at all" so the cancer has shrunk. 


Pre op assessment for HDR Bracytherapy has been done. Just waiting for a date, then 23 fractions EBRT


We need to up the healthy eating and exercise as cholesterol has risen slightly. 


Feeling hopeful 


 

 
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