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brachytherapy or EBRT experience.

User
Posted 11 Dec 2014 at 20:22

Hello, my husband was diagnosed back in June with prostate cancer, psa was 3.4. (gleason 3+3 after biopsy) No symptoms, it was found after blood tests for something else and they just did psa too. We has to wait 6 months to see brachy specialist, he encouraged us to just leave it for the time being and come back in 3 months.

The biopsy caused an infection with 3 months of antibiotics being taken. But he still says it hurts in his testicle and deep inside, which wasn't there prior to biopsy.

Next appointment is next week, the psa results have shot up to 4.9 (much lower than some of the poor people on here though) So I think we will be asking for the brachy or ebrt to go ahead. I think there is a waiting list of about 8 weeks though. My husband is 57 and we have a young family (I am 15 years younger) our youngest child is only 5. He works all hours as he is a farmer.

I would just like to hear other people's experience of brachy or ebrt. Which one is better? With the least side effects, especially as he will be working full time throughout, if there is a wait it will be due at calving season, so he will be even busier, I can help but not with calving!

He has threatened to leave it and let nature take it's course as he is so worried about the ED side of it. He jokes he would rather have 5 years of life with use of his "manhood" than 10 years without!! So I would love to hear if it is really that bad and how he will get on maintaining a full time job. 

Any experiences would be great, I have read so much but would like to hear real experience rather than statistics. Thanks in advance.

User
Posted 01 Feb 2015 at 09:24
Hello, I thought I would add how the situation is at almost 4 weeks after Brachy Incase anyone is following and considering Brachy.

Things are not too bad, the main thing really getting him down is burning when peeing, he says it is agony, though not every time he goes. Nights are ok, some nights he is up twice, some nights he has gone from 10pm through till 6am which is important as he works hard and needs sleep.

Also still opening bowels 4-6 times a day, also has burning in the back passage most of the time.

He has a constant ache in his prostate which I can't find anything about on the Internet, we know a few people that have had brachy and they didn't have any ache inside. He said it is not bad pain in the day but hurts in the evening when he comes in and sits down. 2 more weeks until we see the consultant, I think he will feel better if the consultant tells him the pain is normal. The biopsy gave him prostatitis which may have returned ( though other half says it never went)

He has booked an appointment with his gp next week about the burning, I am not sure the gp will be able to help, but he can test to see if there is an infection. He does have days when the burning is more severe and he needs to go every 10 mins or so, so perhaps an infection, though it seems ok later in the day.

I am glad he didn't have external beam therapy as he has already said he would have stopped if he had the same symptoms. But to be honest I think overall what he is experiencing isn't too bad, he is no more tired than he was before, he works hard 365 days a year so he gets tired anyway.. If the treatment works, even if only for a few years it will all be worth it. If we can find a solution to the burning then he will be happier.

I hope this is of some use to anyone thinking of Brachy, we know 3 others that have had it and didn't get the burning or the ache inside so everyone is different, he is now coming to the peak part for symptoms, so hoping in a few weeks they will ease off. Oh and if anyone wants to know at the moment everything is normal in the bedroom department. Not sure how it will be 2 years down the line as I know it can take a few years to show.

User
Posted 18 Dec 2014 at 10:07

Hello, thanks to both of you, we decided to just go for it and have treatment as soon as possible, psa has gradually been raising it was about 1.7 at the first test 7 years ago, (general well man test, he didn't know about psa) it has steadily gone up to 4.9 this month. The Brachy chap did say still no rush for treatment, but we want to get it done. So booked in 3 weeks time.

He said brachy would be better with least side effects and he should be able to continue work. (help booked up on the farm for 3 days) the journey to hospital, parking and walking in takes a good 2 hours, so t would be such a long day going for EBRT. My husband has never been ill, never been in hospital (once age 5 and  can't remember) and never taken a day off ill, so I think it will be hard for him, infact just keeping him indoors is hard!

He is still really worried about side effects, particularly upset tummy as he has problems with his tummy anyway, also worried about the ED side of it, I have told him I am sure we can overcome problems in that department, but for him that is a very important part of his life, he seems to have a very high sex drive, (I am sure it isn't normal!!) I am embarrassed to say that at 15 years younger than him I hardly have any sex drive! He goes a week without and he is bad tempered, slams doors and is generally angry with everyone, so I really hope he can cope if it doesn't work!! He did ask the Dr if he could prescribe some bromide equivalent, the Dr said he can provide a photo of his mother in law!

If anyone has any stories (good or bad) we would love to hear them, seems on these sort of sites it is often bad stories I read. Thanks again.

User
Posted 19 Dec 2014 at 19:56

Hi, will look at profile, it made me smile in a way, knowing he would not even consider tight pants or pads, the consultant said it should just clean him out within 10 minutes of taking. Our route is about 45 mins of country lanes, then dual carriageways, no service stations, I am sure he will be ok. We know of 2 people that have had brachy, one had minor bowel problems for a few months, the other minor bladder problems, both are fine a few months down the line, they both said they had to go quickly. Being a man the bladder one isn't a problem so much, especially as he works outside on his own. Men are lucky in that they have a "spout"

User
Posted 21 Dec 2014 at 15:41

sjtb,

Sandra is right, do not fret about this, I certainly would not wish to add to your or your husband's concern. Different consultants can have different approaches; you have illustrated this yourself. You said the oncologist had said that HT would be required with EBRT, whereas the brachy chap said it wouldn't be needed with EBRT. HT is a treatment in itself and when given as a precursor to RT, it is not only to help shrink the tumour but to help restrain and mop up random cancer cells by shutting down the supply of testosterone to them. If primary treatment such as Surgery or RT fails and cancer spreads, men are often treated with HT, or in some cases this is resumed to treat cancer systemically.

Some people want to know as little as possible about a health matter and just leave everything to their consultant, my wife is just like that and that's fine. However, some men or their partners want to satisfy themselves that they are getting the very best treatment for them and ask questions of their consultant(s) and in some cases even seek second opinions which is also fine. Strangely, from what we read on this forum it is often the wife or partner of the man that asks detailed questions and does a lot of the research. So be happy in your approach and have a Happy Christmas.

Barry
User
Posted 01 Jan 2015 at 12:40

Hi, some of the information you have given in different posts is conflicting but I can't find anywhere that you have said which kind of brachytherapy your OH is having.

Your husband's pain is probably psychosomatic - if it had spread it would be unlikely to be 'all around the area' as he is describing as that is not how prostate cancer moves and even if it did, it would not cause pain like your OH says. Perhaps the GP could give him a mild sedative or something to help with nerves?

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

User
Posted 16 Jan 2015 at 12:33

Hello, ten days on and he isn't too bad, thanks. Main symptoms are bowels and bladder, bowels are 4 or 5 times a day (but he had problems with that before) As for bladder he keeps having to go a lot, which is to be expected, no leaking or anything, some nights it has only been twice but others up to 6 times. So that is getting exhausting, he had to be up at 5.45am for corn collection this morning, early mornings were not a problem before but they will be with lack of sleep. But let's hope it will be worth it. 

He has a very bad back at the moment which he says makes him forget about the pain in his prostate. He is worried about the pain in his prostate, but I am sure this must be normal so early on? I can't find anything about pain in the info we have, only in the few days following treatment, but says should ease after a few days, but having said that he went out on the tractor for a delivery and if anyone has ridden in a tractor it is very bouncy and he was driving an hour so I expect all the bouncing about didn't help!

So far he is working a full day as normal, from day 4 after treatment, I had a job to keep him in on day 3, he hates it indoors! at least it is a fairly quiet time on the farm so he is only usually outside from 8am till 5pm In summer he is usually out 6am till 10pm which is why we decided on treatment now while it is quiet on the farm. Calves start being born in 2 weeks time, this isn't necessarily more work, but he usually goes out a couple of times during the night to check them and occasionally he will be up most of the night with a difficult calving. So I expect there will be more tired days to come. But he can come in at lunch time for a nap if needed.

I have been looking up drinks that upset the bladder, he has cut out fruit juice and only one cup of tea with caffeine in each day. Not sure how that will go. 

But overall I would say it has gone well really, it wasn't as bad as he expected, just the tiredness, but the weeks will soon pass and that side of it will hopefully pass by. 

I can only hope everything will be successful and it will all be worth it.

Thank you for asking.

User
Posted 16 Jan 2015 at 14:48

Did they advise him to drink cranberry juice? Best thing for soothing the bladder lining.

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

User
Posted 19 Jan 2015 at 19:20

Hello devonlad. Thanks for asking. Yes he isn't too bad. He is still going to the toilet a lot, (both ends, but mostly bladder) he has had a very busy day today, mucking out day, plus a calf born, he says he has to keep stopping for a wee and only half eggcupfull. Then 5 mins later going again. He thinks the cold isn't helping, he is still out working now at 7pm so expect he will retire to bed early. He has only had to get up twice in the night the last 2 nights which is good.

His prostate is hurting still, not bad pain, just uncomfortable. He has 2 friends that have had brachy, both say they had no pain once the initial pain from needles had passed, so he is concerned at that. 

I noticed you had a bone scan devonlad. I wish my other half had had one. Just to put his mind at rest, he is in a lot of pain today in his back, but he does works hard and has been told the discs are worn (told this about 7 years ago) but when you get a cancer diagnosis your mind starts to fear the worst. We can only put our trust in the consultant, he says psa of 4.9 is too low for it to have spread, so we have to trust his judgment.

 

User
Posted 20 Jan 2015 at 20:32

Hope things keep improving for you both and brachy will be curative. Stay strong,El.

User
Posted 21 Jan 2015 at 23:50

Hi sjtb

Yes I did have a bone scan but another consultant questioned whether it was really necessary (even though I didn't ask for it)! However for peace of mind your man could always ask for one even now .... they can't refuse, or at least if they do there is a way round it. Peace of mind means a lot when you are diagnosed with anything, let alone cancer.

I have a really great, and well respected,  friend who is a local farmer who had prostate cancer treatment over 11 years ago who I know would be more than happy to speak to either you or your man if that would help? He really is  a lovely bloke and will understand the pressures your man is under re. farming and at the same time trying to cope with the after treatment of prostate cancer. Let me know if you would like me to put you in touch with him? He's also in touch with many folk who have had all sorts of treatments so I am sure he would be a great contact for you both.

Take real good care of each other and I can see how much you care for your man ;-).

dl

 

 

Quote:

Hello devonlad. Thanks for asking. Yes he isn't too bad. He is still going to the toilet a lot, (both ends, but mostly bladder) he has had a very busy day today, mucking out day, plus a calf born, he says he has to keep stopping for a wee and only half eggcupfull. Then 5 mins later going again. He thinks the cold isn't helping, he is still out working now at 7pm so expect he will retire to bed early. He has only had to get up twice in the night the last 2 nights which is good.

His prostate is hurting still, not bad pain, just uncomfortable. He has 2 friends that have had brachy, both say they had no pain once the initial pain from needles had passed, so he is concerned at that. 

I noticed you had a bone scan devonlad. I wish my other half had had one. Just to put his mind at rest, he is in a lot of pain today in his back, but he does works hard and has been told the discs are worn (told this about 7 years ago) but when you get a cancer diagnosis your mind starts to fear the worst. We can only put our trust in the consultant, he says psa of 4.9 is too low for it to have spread, so we have to trust his judgment.

 

Edited by member 21 Jan 2015 at 23:53  | Reason: Not specified

User
Posted 16 Feb 2015 at 15:59

Hello, I thought I would put an update on here (incase anyone is reading this and thinking of Brachy) We have had a bad 4 weeks, lots of burning, lots of trips to the toilet (both ends!) Also a painful prostate when he sits down. Been quite a tough time.

We saw the consultant oncologist today, he prescribed anti-inflammation tablets, he said the pain inside is radiation prostatitis. The burning is a radiation cystitis, he said only 10% get such bad side effects. Tamulosin now to be taken twice a day. 

CT scan done, everything looks fine. PSA at 6 weeks after brachy is 2.9 (4.9 before brachy)

So hoping everything will start to get better.

Edited by member 17 Feb 2015 at 13:55  | Reason: Not specified

User
Posted 16 Feb 2015 at 18:41
Hi

so pleased that you now have answers as well as some treatment that should reduce the discomfort. I always find it a bit annoying when someone throws a statstic like that at you . 1 in 100 just 1% or whatever it doesn't change the fact that your husband is it does it? Always reminds me of politicians. The PSA reduction is great news so I really hope that all the itis's wear off quickly so that you can get back to some degree of normality.

Best wishes

xx

Mo

User
Posted 22 Feb 2015 at 11:25

Hi Guys,

I had external beam RT 7 years ago, and salvage HDR Brachytherapy earlier this month, and I have to say that the HDR Brachytherapy has been far kinder on my bowels and I have suffered very little, indeed I have had to take liver salts once!

The only disadvantage with HDR Brachytherapy I have experienced is a sore penis, and I think that is mostly a consequence of the large bore catheter they use to water wash your bladder during treatment, however this is exactly the same as the template biopsy so I expect it will clear in a few weeks.

Overall very glad I had it done and I would recommend HDR Brachytherapy to anyone.

:)

Dave

User
Posted 06 Mar 2015 at 10:18

Glad things are starting to look up, farmers work so hard a good nights sleep is so important (for both of you!).

Hope things continue to improve

Lara

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User
Posted 12 Dec 2014 at 02:22

Hi SJTB,
there is no 'better' - what is best for one man is different to the guy next to him. I would recommend that you and your husband ask for an appointment with an oncologist who can talk you through the differences between brachy and other RT treatments - much would depend on what is available at your local hospital if husband wants to work throughout as travelling time to and from a hospital further afield may be too limiting. It would also depend a bit on whether he is being offered IMRT which is more targeted than older types of EBRT and causes less side effects. You would also need to clarify whether he would be put on hormone therapy as well - it is this that might make the very heavy aspects of farming difficult for him as HT can lead to muscle loss and weakness.

We don't know all the ins and outs of your husband's particular diagnosis so it would be inappropriate for us to recommend a specific treatment. However, men on here that have had brachy seem to do well - research suggests the risk of side effects is significantly lower than for other treatments - at least in the short term. It is too new a treatment to make strong statements about the long term effects although as with other radiotherapy treatments there seems to be a slightly increased risk of bowel cancer ..... but this would be many, many years later.

My husband had IMRT after the surgery failed to get it all - he worked throughout although he did need a nap sometimes in the afternoon / tea time.

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

User
Posted 12 Dec 2014 at 09:59

Hello sjtb and welcome.

As Lyn says, as carers, sufferers, partners we don't push any particular treatment on anyone.

If somebody asks for advice we can only direct them to the available information.

If you click on my name for instance it will bring up my husband's detailed profile.

He had permanent seed Brachytherapy on 3rd June this year. He is 74 years old and pretty active for an "old" man!!

IT's true there is the further possibility of future problems with bowel cancer, maybe more so for my John since our daughter was diagnosed with aggressive bowel cancer a couple of years ago.

As Lyn suggests, it may be wise to ask for the oncologist who will go through the treatment, side effects etc with you.

Yes, your husband's PSA appears low, even lower than mine's was.
But the sudden raise may well have been caused by the stress of the situation, the infection he has had or even, sexual intercourse 24-48 hours before the blood test was taken.

It does not have to be as sinister as it first appears.

With young children together then you'll need to work together to get through this. Many people on here will tell you the first part, the not knowing - the having to make a decision which you hope is the correct one for you - is perhaps the worst part of all.

Your husband needs to know that, no matter what the future regarding ED is, then you can work it out between you.

Maybe he doesn't want (or have time if he's a busy farmer) to wade through the positive posts on here.

There is much support and caring by people who have gone through exactly what you are both going through.
The outcomes may vary but we all, without exception, will have been through this dreadful phase of this disease.

My husband was adamant that at 72, when he was first diagnosed, and then 73 when he had to make a choice of treatment, that he would not want to live if it meant he would be incontinent or have ED. Side effects, for us a least were temporary, were not as bad as he thought they would be.

Natural reactions and feelings, based on what you have now. The reality is that your husband has a life to live. To continue to love you, in whatever form that takes, to see his children grow and mature into adults who have something to offer us all.

IT's still early days for you. You haven't said whether his cancer is aggressive or whether he has been told he has time to make decisions.
Best wishes for whatever decision you make.
Hang in there, somebody else will be along to offer their take on your situation.
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 18 Dec 2014 at 10:07

Hello, thanks to both of you, we decided to just go for it and have treatment as soon as possible, psa has gradually been raising it was about 1.7 at the first test 7 years ago, (general well man test, he didn't know about psa) it has steadily gone up to 4.9 this month. The Brachy chap did say still no rush for treatment, but we want to get it done. So booked in 3 weeks time.

He said brachy would be better with least side effects and he should be able to continue work. (help booked up on the farm for 3 days) the journey to hospital, parking and walking in takes a good 2 hours, so t would be such a long day going for EBRT. My husband has never been ill, never been in hospital (once age 5 and  can't remember) and never taken a day off ill, so I think it will be hard for him, infact just keeping him indoors is hard!

He is still really worried about side effects, particularly upset tummy as he has problems with his tummy anyway, also worried about the ED side of it, I have told him I am sure we can overcome problems in that department, but for him that is a very important part of his life, he seems to have a very high sex drive, (I am sure it isn't normal!!) I am embarrassed to say that at 15 years younger than him I hardly have any sex drive! He goes a week without and he is bad tempered, slams doors and is generally angry with everyone, so I really hope he can cope if it doesn't work!! He did ask the Dr if he could prescribe some bromide equivalent, the Dr said he can provide a photo of his mother in law!

If anyone has any stories (good or bad) we would love to hear them, seems on these sort of sites it is often bad stories I read. Thanks again.

User
Posted 18 Dec 2014 at 11:02

Hi sjtb,

I can't give you any advice re Brachy etc

But your comment about the mother -in- law made me laugh!  http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Best Wishes

Luther

User
Posted 18 Dec 2014 at 12:51

It is true that the majority of what you read on this forum as with others is weighted more concerning problems than success stories. New members often join because they (or somebody representing them) are presented with a PCa diagnosis which is devastating. They seek help in understanding some of the basics and a more layman's explanation of things and seek support. Many of the these members then have their treatment which seems to be successful and leave us. Those that remain generally have more advanced cancer often with ongoing treatments and find comfort from mutual support. Then there are some who are doing OK but feel they would like to help/support other members.

It is encouraging to read of men that have done well because there are many of them but by the very nature of a support group there is bound to be a preponderance of postings relating to those with an ongoing situation.

Of course men have great concern over Incontinence and ED, the possibilities of which are generally increased by treatment for PCa. I am a little surprised though that a man would opt not to have treatment if it meant his life was shortened by say 5 years but he avoided ED for an equivalent time . As has been said, there are chemical, mechanical and other ways to help overcome this. Then it should be remembered that as men pass the age of 50, an increasing number of them, even those without PCa, begin to have difficulty in obtaining an erection to the point where some become impotent. I googled this but the reported figures seem to differ considerably. This is an aspect I can't remember being referred on this forum. Incontinence seems to happen later unless there are medical reasons or conditions that give rise to it.

Barry
User
Posted 18 Dec 2014 at 15:21

"He is still really worried about side effects, particularly upset tummy as he has problems with his tummy anyway, also worried about the ED side of it, I have told him I am sure we can overcome problems in that department, but for him that is a very important part of his life, he seems to have a very high sex drive, (I am sure it isn't normal!!) I am embarrassed to say that at 15 years younger than him I hardly have any sex drive! He goes a week without and he is bad tempered, slams doors and is generally angry with everyone, so I really hope he can cope if it doesn't work!! He did ask the Dr if he could prescribe some bromide equivalent, the Dr said he can provide a photo of his mother in law! "

That made me laugh too. !

In an earlier post sjtb you quoted to the effect your husband saying he would rather have and use his manhood for 5 years.

There was/is no guarantee that those five years would have been trouble free in the sexual department.  His cancer may well have progressed to a stage where he himself didn't feel like sex, and by that time it may well have escalated to the point where the sheer aggressiveness of it meant aggressive treatment.

Firstly, regarding upset tummy. Not necessarily a long term problem although the bowels are a bit of a nuisance for a while.

I would really advise him strongly to look into doing pelvic floor exercises, starting today. He may well have continence problems for a while once the catheter is removed and strengthening his pelvic floor will help. Not a given that incontinence will last though

I've said before that my other half hated the idea of lack of control but when it came to it he just got on with it and eventually he left off all pads. He does still have to plan his day if we are going out. He is currently on Tamsulosin which helps with the flow.

He does still have the occasional discomfort with his bowel but not enough to affect our lives.

Tiredness for a while was a real problem.  It is a stress on the body, especially when the seeds are first active and at their strongest and there is no way round the fatigue that will come along. He may well be a very fit man but I doubt he will get straight back to work 3 days after the procedure. I hope I'm wrong but he should be prepared for the fact that he may need more rest than he does now

Now sex, that is very important to a lot of people men and women.  It might not be an initial problem while he's tired at first.

We can only, as a support group, offer our own spec on how it works for us.  All I would say is be patient with each other. He would be best to take it a day at a time. Accept the situation for what it is now and concentrate on getting better after the procedure. Worry about the rest of it if and when it happens. I might not be as bad as he worries about. None of us can predict exactly what it will be like for him.

For us, intimacy is probably better than it was prior to the op because ED had started to creep in and we just put it down to aging. It's true that we have to use Sildenafil (Viagra) to achieve an erection but apart from the slight aggravation of having to plan round taking it so spontaneity has gone, it is certainly worth it.

We also talk more about everything so there are fewer misunderstandings.

IF you have any questions, of whatever kind, and don't fancy asking on here then message me through my profile and if I can help I will

Enjoy your Christmas as much as you can with this hanging over you.

Best Wishes

Sandra

PS.

I also feel that we project more negative info unwittingly because people will ask about their worries and look for hope from others who have followed the same path.

There are more of those postings than there are of the more positive kind, perhaps because those who get an excellent result are uncomfortable posting about it in case it upsets others who are not as successful.

We all love a good result and it is a great help to know there are people who get on top of their cancer and have kicked it up the backside !!

 

 

 

Edited by member 18 Dec 2014 at 16:01  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 18 Dec 2014 at 16:27

Stjb, will he be having brachy on its own or with hormone treatment? If on HT then this is the bromide he was asking for - unless he is very unusual, his libido will desert him so he won't miss the sex. You will both still be able to enjoy cuddles though.

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

User
Posted 19 Dec 2014 at 12:06

Hello. thanks for replies. No hormones are needed, prostate is normal size.

We had to fill in a questionnaire all about bladder symptoms, he got top marks as no symptoms whatsoever, I am assuming they will get him to fill it out in again a few months after treatment. We also had to fill out questions about sex life, which made us laugh, one question was...in the past 6 weeks, how many times have you attempted sex and not been able. My husband wanted me to write that he attempts it every day, but the wife won't let him!! Top marks on all those questions too, as no problems in that department either. The Dr said he should not have any problems with his bladder as he has no symptoms now, not quite sure I believe him there? Going on what I have read. Also said should not get ED either as no problems there, he said it would just "deflate" a little. Hmmm, not sure on that either. I have also read that there is 30-60% chance of it returning, depending on how slow growing, how big etc The consultant said my figures were wrong and it is less than 10% but I am not sure he is correct. Especially as my husband is so young, perhaps in older men they will die of other causes before it returns?

As for work, he has no chioce but to work. The day before he goes in he will put lots of straw in the cattle so it won't need doing again for a few days, someone will come in and feed them for 3 days, then day 4 he will be back out for a full days work, as the cattle will all need straw etc. I can help a bit, but I can't even push the straw bales round as they are too heavy. This time of year he only works 8am till about 5pm so not too bad. But I think he will struggle, he can come in at lunch time for a nap if need be. We can't afford staff unfortunately. Then about 8 weeks after treatment the calving season starts, which involves lots of nights outside checking for calves, so I hope some of the tiredness will have gone, again I can sit up and watch the cows but I can't assist them for delivery (I do along side my husband, but not alone)

I am a little concerned about our children not sitting beside him, I can't find much information about it anywhere, like how near they can be, what harm it causes. We have 3 young boys, the youngest is 5. I wish I had asked them more at the hospital. I know my husband won't ask, I don't whether I will get to speak to anyone, I won't be able to stay when I drop him as I need to get back to collect the children from school. (I have arranged childcare the next when I collect him, as no idea when he will be allowed to leave) 

 

Thanks everyone for your comments. I will let you know how he gets on.

User
Posted 19 Dec 2014 at 12:12

Hello, yes I agree with you about him saying he would rather have use of his manhood, but if he was told it was aggressive cancer I think he would be shocked into agreeing, but at the moment he has been told it is very slow growing, effecting less than 5% of prostate, they said he will need treatment but possibly not for 10 years, but with slowly raising psa I have persuaded him to treat it, he has a family and responsibilities. If he had been told it was aggressive and he needed treatment now I know he would think differently.

User
Posted 19 Dec 2014 at 12:26

Hi SJTB,

If your O.H. is having low dose (permanent seed) brachy your children are at risk and should be kept away from him as much as possible. Putting them on his knee is the worst- sorry to impart this to you . We weren't told either when my OH was offered low dose. Circumstances changed and he had high dose with RT -the risk to children is lower in this case ie virtually none. I know this must be hard for you but the benefits of treatment far outweigh the drawbacks. My OH had very few side effects and lives life to the full. Best wishes to you and your family.

User
Posted 19 Dec 2014 at 12:32

Hello again sjtb.
Firstly your fears regarding the dangers involving young children and the radioactive seeds. The following is an excerpt from a NHS leaflet from Clatterbridge Hospital

"Radiation and you

Although you have radioactive seeds inside your prostate, it is safe for you to go home, have visitors, greet, and sit next to most adults - see later. The type of radiation used gives a high dose within the prostate. The level of dose reduces dramatically outside that area and is almost zero at the skin surface but is highest on the back of the pelvis. For this reason we recommend against prolonged pelvic skin to skin contact with anyone for the next two weeks. It is safe for young children to be in the same room as you for as long as they wish. A peace of mind approach would be not to nurse children on your lap or sit very close to each other (less than 0.5m) for more than a few minutes or on multiple occasions per day.
12
It is safe to embrace or hold children for a few minutes each day. We recommended that if you wish to they are embraced or held at chest level while standing for the first two months after implantation.

Brachytherapy and sex

In the first few weeks after the implant, the risk of the seeds becoming dislodged is at its greatest. Ejaculation is most likely to cause this. It is important for the first 2 weeks not to have any sexual activity that causes ejaculation.

This includes oral sex and masturbation.

If your partner is a woman of child bearing age we strongly advise against having penetrative sex during this time.

If one or more radiation seed(s) are passed on to her, there is a risk to the health of any future children should the seeds give a radiation dose to her reproductive organs (especially the ovary).

A condom must be used for the first five ejaculations whatever the time delay after implantation and whether this is during sexual intercourse or not.

You may prefer to have your first ejaculation without a partner in case of the rare event of a seed being passed into the ejaculate. While the radioactive seeds are inside you they are giving you the benefit of treating the cancer.

However if they were to be placed inside another person (caused by your ejaculation) they could cause them harm.

 

My comments now:

Re: the use of a condom,  initially I would strongly advise that you get prepared and purchase them beforehand.

Apart from the safety aspect, if the first ejaculation is during intercourse with yourself (ie not on his own), the appearance alone can be a bit daunting.

There is likely to be blood and clots passed and it will make a mess of your bedding !!!!!!

For us, at least, clear ejaculations didn't happen until the third or four time.

There was also some discomfort from underneath the scrotum and within the penis.

The area between the legs will be very bruised looking (black in fact) and will be tender.

Initial tiredness, on the day and following, will probably be caused  by the effects of the anaesthetic(? spelling!)

Once the effects of the seeds kicks in then tiredness will come. As he needs to work, he will have to accept that he will need a bit of a nap mid afternoon.

He's used to hard physical work and is a strong man so he is likely to fare better than somebody of my husband's age (74)

It's just a question of getting his head around his "new" normal for the time being.

Good luck. I'm sure you will both be fine. Just be patient and loving with each other.

Best Wishes

Sandra

Edited by member 19 Dec 2014 at 12:51  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 19 Dec 2014 at 12:53

Hello, thanks for that, some info there we hadn't seen. The consultant said no sex for 1 week (definitely won't be penetrating for a while but there are other ways!) your info above said 2 weeks. My husband did complain at 1 week! I am looking forward to the break!! Hopefully he will loose interest for a few weeks. I think that all looks a little scary about the children. Not sure I want to lay next to him either! 

After the biopsy he just could not leave it alone...next day it was like ketchup coming out, that shocked him a bit, serves him right for not leaving alone, but it was brown for a good 3 weeks and then clear like water for months (he did have an infection) now back to normal. He has had a pain in his testicle since the biopsy, the consultant was no help with that, it keeps him awake at night. (I did say possibly caused by the fact he had to "fiddle") not sure whether that will get better or worse after brachy?

Another scary thing is when it says do not father a child for 2 years, makes you realise how bad this stuff is! I am only in my early 40's so I could still fall pregnant, no more children wanted though! We have 5 (3 both of ours and he has 2 grown up) but it is something to bear in mind. We have been told he may well be sterile after treatment but never take it as a contaceptive method! Due to medical reasons I have to take the pill anyway for all my childbearing years. 

Edited by member 19 Dec 2014 at 13:05  | Reason: Not specified

User
Posted 19 Dec 2014 at 15:08

I did ask John's nurse about sleeping next to him as we usually sleep "spooned"
He was a very nice foreign man but I'm not sure he understood what I was trying to explain.

His answer was I was perfectly safe as long as I didn't sleep "on top of him" !

I don't know if you got round to reading John's profile. It's quite long because I write it and according to my other half I'm too wordy! but fairly descriptive of the aftermath of the procedure.

John suffered dreadfully with constipation so might be wise to get prepared for that too. I know you said your husband has a dodgy tummy.

The sites publication on Seed Brachytherapy is very good and explanatory. 

Sandra

Edited by member 19 Dec 2014 at 16:19  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 19 Dec 2014 at 17:21

Hello, not read his profile, not sure where to look, but I can try and find. I am fairly certain there will not be constipation, he suffers from loose stools all the time, infact that s why he went to the gp, we don't discuss bowels, but I was shocked when he said he hadn't done a normal, formed poo in years! But they seemed to think it is nothing. He only has to eat onion or spicy food, even coffee and it is out the other end fairly quick. He has to use a suppository in the morning of brachy, he doesn't think he will make the 2 hour drive without a stop!!

User
Posted 19 Dec 2014 at 18:38

stjb, if you click on the name Johsan under my picture it will bring up the profile.

Does the other half have IB?

The journey will no doubt be a worry for him, being uncertain about the loo.  He might feel more confident if he is padded up before he goes on the journey. Close fitting pants and tena pads or even sanitary towels. It may at least allow him time to get to a loo with dignity. Have you planned the route, making a note of where the toilets are.

It's what we had to do for my other half. We still have to be careful when we go out but it tends to be more for peeing, so John delays his Tamsulosin to allow for it and temporarily restricts his drinking.

Anyway, if you manage to get to the profile and want to ask anything just message me.

Have you ordered any of the publications from here.?

We can't control the winds - but we can adjust our sails
User
Posted 19 Dec 2014 at 19:56

Hi, will look at profile, it made me smile in a way, knowing he would not even consider tight pants or pads, the consultant said it should just clean him out within 10 minutes of taking. Our route is about 45 mins of country lanes, then dual carriageways, no service stations, I am sure he will be ok. We know of 2 people that have had brachy, one had minor bowel problems for a few months, the other minor bladder problems, both are fine a few months down the line, they both said they had to go quickly. Being a man the bladder one isn't a problem so much, especially as he works outside on his own. Men are lucky in that they have a "spout"

User
Posted 19 Dec 2014 at 22:19

Just an observation and what may be true in a few cases may not necessarily be generally the case but from what I have read here Brachy seems to pose potentially more severe problems than EBRT, certainly judging from my experience.

Barry
User
Posted 20 Dec 2014 at 10:12

Hi, thanks for that Barry, that is why I asked for other people's experience, he prefferred the idea of EBRT as he is terrified of ataying overnight, anaesthetic etc. But we were told the side effects were worse for EBRT and he would find it a struggle to work round EBRT also considering it is a 4 hour round trip to hospital, plus treatment time, he also has to fit in at least 5 hours work on the farm each day, so we were advised to do brachy (or watch and wait) also as he suffers from bowel problems the said brachy was milder on the bowels. Watch this space!

User
Posted 20 Dec 2014 at 12:18

I have read the profile Johsan, I hope mne doesn't suffer with all the leaking, I did mention he might need pads and I got shouted at, he said if that is the case he won't have the brachy, so best not mention again! His father at 93 needed pads and that is what he is thinking of. His Father also had prostate cancer, though never had treatment and didn't die of it, we think it may have caused some of his incontinence though in his last few months as he had no bladder control. Those we have spoken to have mentioned urgency but no leaking, but only know 3 that have had it.

User
Posted 20 Dec 2014 at 14:39

Ooops no. Wiser to take it day at a time if he is so adamant. Johns only lasted in total about 11 days I think it was and no pads after that

We can't control the winds - but we can adjust our sails
User
Posted 20 Dec 2014 at 20:47

What makes it even more difficult to choose between treatments is the unpredictably of how a particular patient will be affected by a treatment. Many men do experience at least some adverse effects from HT. As regards affecting a man wanting to continue working, perhaps the most common and worse of these is premature fatigue, maybe also producing aching joints. Hot flushes (and the sore nipples I had) can be got round and in some cases can be treated to mitigate. Loss of libido should not affect work. Then to this uncertainty, there is further uncertainty over what further tiredness and further side effects various forms of RT will add. It must be remembered that RT also kills good cells so the body is trying to repair itself all along over a long period and this can compound debilitating effects of HT. I found that with the addition of EBRT I was just a little more tired and needed to pass water more frequently. For a while I was needing to get up as much as 8 times a night but this did gradually reduce until a couple of months post RT I was back to my pretreatment twice a night. I did force myself to walk a few miles everyday, albeit at a slower than normal gait. I don't think I could have done manual work though, despite being reasonably fit (I had played short tennis twice a week hitherto even for a reduced time throughout HT). However, I was 71 at the time, and feel I would have coped even better had I been 51. But this is just my experience and for others it could be quite different.

Edited by member 20 Dec 2014 at 20:51  | Reason: Not specified

Barry
User
Posted 20 Dec 2014 at 21:55
No hormones are needed but having read someone else's feed on here it looks like hormones help the cancer shrink down, but we were told not needed. Having taken zoladex myself I found them extremely unpleasant and ballooned 3 stone in 5 months, I refused month 6 but I was not taking it for anything so serious as cancer.

At the moment pre treatment my husband and I often retire to bed early at 9pm ( watching TV in bed) he goes to the toilet at 9pm (ish) and doesn't usually go again until 7 am often after a cup of tea, I am always amazed how long he waits! I usually get up twice! I am sure this will change after treatment! I keep reading about night time toilet trips.

User
Posted 21 Dec 2014 at 01:05

Consultants should evaluate the individual  and in not all cases is HT given prior to, during and after RT. Having said that, Oncologists are also on a learning curve and for example where typically  at one time HT was given for 3 months prior to RT, studies showed that there was a worthwhile benefit in increasing the HT period to 6 months and it now seems to be more the case that HT is continued from 1 to 3 years after RT.  You could ask the consultant why he felt that HT was not needed if the RT route was adopted.

Barry
User
Posted 21 Dec 2014 at 09:33

We were told by the oncologist he would need hormones if he had EBRT so he said he didn't want hormones, they said not needed for Brachy, when we saw the brachy chap he said if we chose EBRT he would not need hormones, I know they are used to shrink the prostate before hand and his is normal size (had the volume test, which I Googled and it was right in the middle of average range) I never new there was a reason to take after. Perhaps if it is small tumour (says less than 5%) they are not needed? I can't ask as I won't see the consultant again as I am just dropping him off, I need to get home for school pick up. Even the 6 week check up is in Feb half term, so I can't go to that either! 

I have been awake worrying now as to why hormones are not needed. My husband won't ask as he says he doesn't want them. I know he would take them if he was told he needed them, but given a choice he won't.

User
Posted 21 Dec 2014 at 10:06

sjtb, please stop fretting, you need your strength and your wits about you for the next few weeks, and with a farming lifestyle and three young children you surely need as much sleep as you can get. Worrying will get you nowhere.

I'm sure that if your husband had needed hormones then it would have been told to him.
Not every man requires them.
My husband too had a normal size prostate and a slow growing cancer, he wasn't offered them either before his seed implants.
Already his PSA is dropping. We've done our bit, including his consultant and now we have to continue to live our lives normally, assuming the seeds will do the trick.

You both have to have confidence in your choice of treatment and in the consultant. If either of you is uneasy to the point that you suspect you have made a wrong choice, or you want more time, then tell them you want a review.
They wont refuse, but I suspect that even if your other half is secretly worried about the lack of hormone treatment, his adamant refusal to take them means he will NOT make enquires because he won't want to know the answer.

I am sure in my own mind that any consultant advising his particular treatment is confident that this particular patient is a good candidate for a success. Every success reflects well on the consultant and improves his "rating".
If the case was more difficult or the outcome less likely to be a success, I think he would advise another route rather than have a failure. If your consultant is confident then so should you be.

That's how I think anyway.

Whatever treatment choice we make there is no guarantee WE got it right. All we can do is research and then trust our final choice based on that.

Your husband has years ahead of him. Maybe at some stage in the future the treatment he has now will come back as a different cancer (ie bowel) but you can't live the rest of his life thinking that's what his future holds. We cannot predict the future. If we could we'd all live a different life to the one we have now.

Was your husband given a designated nurse to contact in the case of queries, or do you have the consultant's secretary number.
Perhaps to put your mind as rest you could quietly ring them and put your fears to them. Failing that, contact this website nurses and ask their opinion.
Lots of members have talked to them and found them very reassuring.

Anyway, try and relax. The children will pick up on your fretting and then they will worry.

Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 21 Dec 2014 at 12:21

Hello, yes I am sure you are right Sandra, thank you. I am one for spending my life worrying about one thing or another, be it something big or small, amazing I have not got grey hair! I find myself worrying about the cancer returning and it has not gone the first time yet! My husband just says he would be happy if he gets another 10 years, but if it is only 5 then so be it. That isn't what I want to hear him say!

He is a typical farmer, spends all daylight hours working, never takes holidays and like a lot of farmers we have known, he will probably work almost 'till the day he dies! He is happy with that. I would rather see him retire and enjoy life a bit, but apparently I have put paid to that by having the boys! I am happy to return to full time work though, but I know he would be bored, he hates being indoors. I have told him off this morning for not stopping for breakfast, but I get "no time for food" he likes doing that to me, knows I get cross!

I will let everyone know how he gets on, he doesn't look on here, he has not done any research as he doesn't want to know! Sometimes it is probably better not to know and leave it to the professionals. 

Thanks again.

User
Posted 21 Dec 2014 at 15:41

sjtb,

Sandra is right, do not fret about this, I certainly would not wish to add to your or your husband's concern. Different consultants can have different approaches; you have illustrated this yourself. You said the oncologist had said that HT would be required with EBRT, whereas the brachy chap said it wouldn't be needed with EBRT. HT is a treatment in itself and when given as a precursor to RT, it is not only to help shrink the tumour but to help restrain and mop up random cancer cells by shutting down the supply of testosterone to them. If primary treatment such as Surgery or RT fails and cancer spreads, men are often treated with HT, or in some cases this is resumed to treat cancer systemically.

Some people want to know as little as possible about a health matter and just leave everything to their consultant, my wife is just like that and that's fine. However, some men or their partners want to satisfy themselves that they are getting the very best treatment for them and ask questions of their consultant(s) and in some cases even seek second opinions which is also fine. Strangely, from what we read on this forum it is often the wife or partner of the man that asks detailed questions and does a lot of the research. So be happy in your approach and have a Happy Christmas.

Barry
User
Posted 29 Dec 2014 at 02:44

sjtb, the treatment programme needs to be right for each patient - there is no 'one size fits all' solution here. Your husband has expressed a preference not to have HT, and the specialists have probably taken into consideration the fact that he is a farmer - I think the chance of him being able to carry out his tasks properly and without assistance on hormones is probably near zilch. As a result of their experience, they have come up with two treatment options that would allow him the best chance of cure with the least risk to his livelihood. Well done to those specialists for their empathy and consideration, I say!

As others have said, try to put this to one side and concentrate your energies in positive ways.

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

User
Posted 01 Jan 2015 at 09:00

Hello, thanks for that. No hormones were not mentioned at all for Brachy. The oncologist said they would be needed for radiotherapy to shrink the prostate, but after MRI they found the prostate doesn't need shrinking. The Brachy chap he said hormones were not needed for either treatment, my husband did not tell the consultant he doesn't want to take them, he was never given a choice. (He told me he wouldn't take them having seen a few friends that have had them)

We only have a few days left until he goes in. I am still a little concerned at the pain he is getting deep inside, the consultant didn't seem interested. My husband keeps telling me he knows it has spread all round the area as it hurts all the time. The consultant assured us it can't spread that quickly (MRI was 6 months ago) but it all causes worry. I do feel if it were me I would want to find out what is causing the pain before having the seeds put in. I don't know how much the consultant can see when he does Brachy. He said it won't have spread with a psa of 4.9. But a friends step father had a psa of 6 point something (she wasn't sure of the point) and it was in lymph nodes. But I feel all this is beyond my control now. 

User
Posted 01 Jan 2015 at 12:40

Hi, some of the information you have given in different posts is conflicting but I can't find anywhere that you have said which kind of brachytherapy your OH is having.

Your husband's pain is probably psychosomatic - if it had spread it would be unlikely to be 'all around the area' as he is describing as that is not how prostate cancer moves and even if it did, it would not cause pain like your OH says. Perhaps the GP could give him a mild sedative or something to help with nerves?

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

User
Posted 01 Jan 2015 at 12:48

Hello, he is having permanent seed brachy. I think that is what you mean? I know there is one where the seeds don't stay in. I know they said prostate cancer doesn't spread like that, but just seems strange that it hurts all the time. He originally went to the gp with deep tummy pains. Not a lot has been done about it. Once the psa was found to be raised they concentrated on that. But I would want to know what is causing the pains, the deep pains were there before they found cancer. But the pain in and behind the testicle is new. I just hope they don't put the seeds in and find it is worse when they do the MRI 6 weeks later, as I do believe they can't do much else once brachy has been done.

User
Posted 01 Jan 2015 at 14:08

hi,hope the seed brachy goes well, has he had problems with his bowels which could cause pain?? just a thought. hope 2015 goes better for you both .El.

User
Posted 01 Jan 2015 at 15:31

Hello Elajai. Yes bowels is why he went to see GP. He has an upset tummy all the time (not done a formed bowel movement for a few years) He had never told me before as we don't discuss our bowel movements, I was shocked when he told me, I know he only has to drink strong coffee or spicy food  and it comes out the other end quickly. Also he has a deep ache a long way inside. They did general blood tests, allergy tests (he wanted the bowel cancer test that you put samples on every other day, the GP wanted it for him too, but the test was refused as he is under 60) Nothing else was found apart from psa. As I said earlier no symptoms promoted psa test, turned out he had had about 7 psa tests done since his late 40's. He didn't know about them. We saw them on his notes starting at 1.7 and gradually increasing (to 4.9 at last one)

I just can't help worrying what is causing him pain, if it is the prostate have they missed it spreading, if it is bowels then the brachy is going to make it much worse. I have not read anywhere about early prostate cancer hurting, so can't help thinking that they have missed something or it is getting bigger, a lot can change in 6 months (since MRI). He is groaning a lot at night too because his lower back hurts so much. But as someone else said on here, the mind plays tricks too, now he knows it is there he may be imagining more pain. 

Seems that since psa was found to be raised all bowel problems have been forgotten about as far as Dr's are concerned. I did ask whether his bowels will become worse after treatment, we were told they may do, but that Brachy was the mildest treatment option.

I don't think he is worried about the cancer really, he is terrified of the treatment and hospital stay, he has only been in hospital once when he was a small child, he is never ill, he rarely even gets a cold, on the rare occasion he does get a cold, which I would say is one cold every 2 or 3 years or so, he will get a chest infection and needs an inhaler, I am sure this is due to all the rubbish like straw dust and chemicals from spray that he inhales that cause the bad chest, so thankfully he doesn't get them often. But he has never not been able to work on the farm, so it doesn't get bad enough to prevent work. So the panic is setting in at the thought of not being here a night (him, not me) he is convinced the cows will get out or some major event as he isn't here. We don't take holidays incase the cows escape! I have joked that I will send him a text in hospital that the cows have escaped!

When he first had the psa results he said to me "what if they tell me I only have 6 months, how will I get the cows and farm sold and sorted in 6 months" Never mind me or our 3 young children!

I will let everyone know how he gets on next week.

User
Posted 02 Jan 2015 at 08:56

Hi

I can not offer any advice on your selected treatments as i am long passed these being of any use to me. but welcome to the forum.

I agree with Lyn the mind certainly does play tricks, i remember early on, when ever my bone scan approached all of a sudden i was convinced that i was getting pains and the cancer was spreading.

 

But when i read comments from consultants such as yours has made, i would love five minutes in a locked office with them.

Bloody amazing http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

 

"The consultant assured us it can't spread that quickly (MRI was 6 months ago) but it all causes worry. I do feel if it were me I would want to find out what is causing the pain before having the seeds put in. I don't know how much the consultant can see when he does Brachy. He said it won't have spread with a psa of 4.9."

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Jan 2015 at 11:23

Yes, I was thinking of you Si as I typed on another thread - Gil's maybe 😳

Edited by member 02 Jan 2015 at 11:25  | Reason: Not specified

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

User
Posted 02 Jan 2015 at 14:08

Hello Si ness. I have just read your profile, you have proved our consultant is not correct. I don't want to quote his exact words incase I am wrong, but when I queried the raise in psa from 3.7 to 4.9 in 2 months, I asked if it could be a more aggressive cancer and could it have spread and he told me something along the lines of no, not with such a low psa it wouldn't have spread, the psa would have to be much higher. But I suppose he was trying to put our minds at rest.

The consultant said psa of 3.7 was normal, but really it isn't. He didn't seem bothered by the jump up either. But for some reason he never has any notes from the previous hospital that referred him or gp notes, which had gradual psa raise for a number of years. Only has the notes from the previous visit to him. 

We put our lives in their hands really and hope they know their stuff. I am sure you are in the minority with having a fairly low psa but gleason that is higher, but it shows it does happens. All the best to you.

User
Posted 02 Jan 2015 at 14:49

Hi , I am sorry if i have added to your concerns it is that i get fed up of hearing these sweeping statements from Oncos.

In America now they no longer offer bone scans to people with a PSA below 10 as it is highly unlikely that there will be spread, thank god i am not American.

In my time i have had some brilliant tradesmen work in my house but i also have had two that was bloody awful, i am afraid that is the case in all professions,

Have a look on the website of your local private hospital, there will be great profiles of every Oncologist they use including the cancers that they are specialists in, all of them will work in the NHS. Sometimes it is worth seeing them privately for a consultation and then ask them to take you on in the NHS.

A friend of mine had virtually given up, his Onco was pretty hopeless, he saw my Onco privately and he took him on through the NHS he is now one happy bunny.

I hope everything works out for you

Si

Don't deny the diagnosis; try to defy the verdict
User
Posted 02 Jan 2015 at 15:26

Not just America - our hospital doesn't offer bone scans for apparently early presentation. John only got a scan after it became obvious that the surgery had not eradicated the cancer.

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

User
Posted 02 Jan 2015 at 16:17

Hi thank you Lynn for your positive input, as has been said no case fits all.  I feel for the OP as we are in the same boat however my husband has a PSA of 0.4 and a gleason of 3+4 = 7, we have been offered Brachy and will meet with the consultant on Wed 7th, we are confused as his lump was pick up from a biopsy last year (3+3 =6) second biopsy was carried out in November producing the higher score.  We are unsure as to what to do as the only way to find out if the treatment has work is by measuring the PSA which in his case is not even measurable.  He also has aching in his groin area...........  What do you do? Do you leave it alone or take the treatment? Do you remove it? Will it continue to grow if you do nothing?  Try to relax and look at it from outside, take the positives not the negatives (says she who is worried like nobody else) I do not know what ot do other then be here and support the love of my life..........Lucky none of us know how long we have on the earth and worrying will only steal your happy times together, I might be gone before him who knows.  I look at it this way.

1, My OH is 57 (still a young man)

2, We have options on the table

3, It is still in the early stages

and 4, We woke up this morning and have spent the day together :)

I really hope you are OK, please try not to worry, change what you can and leave the rest in the hands of the experts xx

 

User
Posted 02 Jan 2015 at 18:34

I agree with Si.  It is worth getting a second opinion,possibly privately.   Any chance of voluntary help on the farm?? NFU ETC

Edited by member 03 Jan 2015 at 12:52  | Reason: Not specified

User
Posted 03 Jan 2015 at 09:40

I have been reading other profiles and seems everyone has gone through a lot more than us, "wishes" your husband is the same age as mine, the psa is very low. The consultant told us there was no hurry for treatment until psa reaches 10, but I didn't agree with him on that one, having read all the stories on here I feel we are best ignoring that advice and getting treatment now. (he did suggest another biopsy in 6 months if it were left) I have been told he is the top man in the area (Addenbrookes, Cambridge) We were also told if we had medical insurance, they would not pay for brachy as it is not necessary yet.
No chance of help on the farm, only paid help, I can do some work, but I am a little nervous of the cows and I can't push the bales of straw round for their bedding (5' round bales, get pushed round to unroll) calving season will start 3 weeks after the treatment, which I think he will struggle with, the consultant said he will be fine to return to full time work by day 3 after brachy...hmm, not sure on that one, don't suppose he has tried the physical demands on the farm. My husband has considered just selling up and retiring, which he plans to do anyway in about 5 years, but for someone who can't sit still or stay indoors, if treatment goes well he would be really fed with no farm. Selling up isn't exactly a quick job anyway, may take a year or so.
I have had the lecture this morning about what to do if he dies on the operating table...I told him off, said he isn't having a major op and will be fine.
I wish both of us could be more like a lot of you on here,a lot of you seem so positive and have been through much, much more. I think you are all wonderful.
I won't feel more positive until the he gets the results of the MRI which he is having 6 weeks later. I can't go to the 6 weeks check as it is school holidays and I have our 3 boys to look after. As my OH keeps telling me he thinks there is a lot more going on inside than everyone thinks, that is worrying me. I am surprised he isn't having another MRI before brachy really, the consultant said the cancer won't have changed in 6 months, so we can only trust him. Until we get the results we won't know, it my well be "in his head" I hope it is!
Thanks for everyone's advice.

User
Posted 03 Jan 2015 at 12:06

Hi sjtb,
You do seem very very anxious about this - if reading stories on here is causing you to mistrust the doctors then it would be better for you to stop reading, I think. It seems to me that you are overthinking things - the specialist says he will be able to work 3 days later and I am sure he will be intelligent enough to be able to work out that farming is very physical work.

Has it been explained to you that the MRI 6 weeks post treatment will not be able to tell you that the treatment has worked? Only the PSA test patterns over the next 2 -5 years can tell you that.

I get the impression that you would not be so keen on selling the farm? Is he aware that he might not be able to get a mortgage now he has been diagnosed with cancer so might be limited to only buying a new home that you could pay cash for?

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

User
Posted 03 Jan 2015 at 14:33

Hello sjtb,

You wrote "  I am surprised he isn't having another MRI before brachy really" from which I deduce scans have indicated to the consultant that Brachy is a suitable treatment. Consultants don't offer treatments that are unlikely to be of benefit ! They want to enhance their treatment & success records. Nor waste resources.

So maybe it is time to allow the specialists to do their job where they have the experience. And looked at all the diagnosis details.

Look at it another way : if there was spread then it is likely many local treatments options would be out of the window. And your husband would be facing HT long term. Which, as mentioned previously, can be very  debilitating especially in a very physical job. Surely far better to take the local treatment & trust that will sort the problem. Subsequent psa results will guide you over time & plans can be made less urgently & without such pressure.

Seems to me you are looking for trouble which may well never arrive. 

User
Posted 03 Jan 2015 at 15:15

Hello. Yes he had an MRI back in June, I am just surprised they are not doing another one as surely things could have progressed in that time. But yes, I am sure the consultant knows what he is doing. It does say in the brachy booklet about going in and having everything measured beforehand, but they are going on the MRI in June

Yes I know about the MRI afterwards is to show where the pellets are positioned, but if the cancer was any worse like my OH keeps telling me, it would show up on there too. Hopefully we can all prove him wrong and that all is going smoothly. We went to a friends party last night and I could hear him telling people he doesn't feel right inside anymore and the pain inside keeps him awake. So until we hear after the MRI then that thought will stay with him.

It has done me some good reading others profiles as I realise how much further on some people are, I am grateful this has (hopefully) been found early enough. I am not allowed to tell him what I have read as he doesn't want to hear any stories, good or bad.

I am all for him selling the farm and enjoying life, we have 200 acres of arable and marshes plus lots of beef suckler cattle, also our farmhouse and we lost his parents last year, so have their large farmhouse too (being lived in by his son rent free, so not earning us anything at the moment) So plenty of money would be available for another property, so a mortgage would not be needed. My OH would like to retire eventually, as a few of his farming friends have passed away recently, they worked right till the end (that is obviously what they wanted) This has definitely made him think a lot more about life and the future.

Edited by member 03 Jan 2015 at 15:48  | Reason: Not specified

User
Posted 03 Jan 2015 at 19:32

Sjtb, we have already spoken together in your earlier posts.

I really do appreciate how you are feeling but it's only a little while now before the treatment starts.

Once something happens you will find that you will relax because the die is cast so to speak.

My husband will not read anything on this site either, he hardly listens when I tell him some of the stories. Although mine doesn't harp on about his cancer (apart from he gets a bit fed up sometimes) , I do try to point out to him occasionally how fortunate he/we are in comparison to others on here.

If it's any consolation, John's PSA has dropped since his procedure in June. Not having a definitive answer (PSA undetectable) like is usually the case following surgery is just something we have to put up with because of our choice of treatment.
Brachytherapy is supposed to have fewer side effects which is why h went for it, but something has to give and with Brachy that is in having a delay before we know whether we can really celebrate.

You have so much going on in your head at the moment, running the home, looking after young children, etc that everything else is becoming an enormous burden.

Keep strong

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 03 Jan 2015 at 20:59

I suppose an MRI scan could be done privately at short notice if hubby feels strongly about this. However, even MRI scans can miss small concentrations of cancer cells. The question as I see it, is would it be likely that an an MRI scan would lead to a different view being taken on the proposed treatment.? The consultant apparently thinks not.

Barry
User
Posted 05 Jan 2015 at 19:02

Well, we are certainly feeling frustrated now, my husband had a call from the consultant this afternoon, he said due to nhs cuts it is very unlikely the Brachy will be going ahead tomorrow, he said the seeds have arrived from Germany, which will get thrown away if not used, he has a meeting with his boss at 9am and will call us after the meeting, he said please take all medicine and the enema but be prepared for it to be cancelled! 

You have all seen what a nutty worrier I am, so a restless night ahead.

User
Posted 06 Jan 2015 at 18:05

Hello sjtb. How is the other half. Did the procedure go ahead.

I really hope so. It can be very frustrating all round when you gear yourself up to something like this and they cancel.

Best Wishes Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 Jan 2015 at 18:22

Hello, yes we got the call literally 10 minutes before time to leave. The consultant said they have cancelled a lot of people, the beds were empty so it wasn't due to lack of beds. I guess it is just nhs funding as they said. Very sad for those concerned.

We both slept quite badly wondering what was happening.

I stayed for an hour and a half today at hospital, they took the other chap first and said it would be another hour or so till my OH would go, so I left as I had to collect the boys. I am getting a little worried as not heard, he was due to in go at 2.30pm and now nearly 6.30pm I know what a worrier I am so resisting calling the hospital, no news is good news as they say. I will call at 7pm if I haven't heard otherwise. 

Thanks for asking.

 
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