brachytherapy or EBRT experience.

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.

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.

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.

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.

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

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

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.?

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.

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.

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

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.

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

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. 

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.

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.

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

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

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

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.

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. 

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

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.

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.