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Biopsey

User
Posted 01 Dec 2016 at 00:34
Hi Alan thanks for your reply and of course your advise as you have been through so much your self up till now. You say you've got peeing problems. At the moment I have to really rush to the loo as soon as I'm standing & have the feeling of wanting to do a pee. I'm sure if I ignore it & think I could hold it I would end up just weeing. It's so disabilating. When I'm in the lounge down stars in the house I keep a large glass that I wee into as rushing to get upstairs sometimes I start leaking before I get to the toilet and get my willy out. On occasions Iv put my hand down my pants to hold and squeeze my willy to stop it from starting to we.

Don t know if you have experienced anything like that. All this has been going on for over a month now. Also Iv noticed I'm not waking up with an erection anymore I always had an erection in the mornings, infact at the moment I'm not that interested in any kind of sex it's as though Iv lost the feeling or urge. Wow this body of mind seems to be packing up. Last week I was in bed along one night and I felt movement in my penis as it had started to get an erection that was the first time within the month that had happened so I wanted to know what would happen if I'd take it to the next step. Anyway cutting a long story short I decided to masterba, it did t feel the same for some reason but I continued as I wanting to see if my orgasums were the same or even if I could still have them. ( does any of this make sense to u )

When I did climaxed it scared me because I didn't produce any thick creamy sperm like I used to. All that came out was a little clear fluid, this has worried me because that's not normal. I hav t tried again since.

Can you throw any light on this side of things?

Many thanks Mike

User
Posted 03 Dec 2016 at 20:14

Hi Mike

Once you start on this process, you start to look at everything as possibly being abnormal. So my advice would be to make notes of everything, stating any changes you have noticed, etc., type it up and give it to your consultant at your next visit. It really helps them to have it written down to add to your file. Otherwise you can forget things during the consultation, and they will ask questions based on what you have noted.

When is your biopsy?

Regards

Chris

User
Posted 03 Dec 2016 at 20:15

Sorry Mike, I didn't think there were any questions in your post.

The symptoms you are describing might be some of the reasons your consultant decided to go straight for a biopsy. Difficulty getting erections, dry orgasms and difficulty weeing are all possible signs of prostate cancer.

Edited by member 04 Dec 2016 at 00:58  | Reason: Not specified

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

User
Posted 03 Dec 2016 at 20:45
M

The amount and thickness of my semen did reduce in the last few months before my diagnosis. I just put it down to getting older. Post biopsy it was pink for a while.

Thanks Chris

User
Posted 04 Dec 2016 at 00:29
Thank you Chris b, Lyn & chris. For your messages. Chris b, you asked when my biopsey was, I had it last Monday 28th Nov nearly a week ago. I also go for my CT scan tomorrow afternoon.n my partner.phoned the scan dept up to see if any appointment had been made because we were supposed to be going away on the 14th.

They were very helpful and said it had been made for the 13 th but could bing it forward to tomorrow 4 th so we decided to take that.

I'm not really sure if we should go away on the 14th with everything that is going on. I think the results of the biopsey I had done on the 28th Nov. Will come through while we away as they said it would be at least 2 weeks, plus this C T scan tomorrow the results of that . As it's abroad as well & im not really sure I feel upto it as I have to keep running to the loo all the time. I think now it is all getting to me more than before. Sorry to go on . Many thanks Mike

User
Posted 04 Dec 2016 at 00:57

If you possibly can, I would go on that holiday. Whatever is going to happen will happen and it may be a long time before you can go on another one. You would have to get advice from the hospital or your GP though and check with your travel insurance though that they are still happy to cover you to travel.

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

User
Posted 14 Jan 2017 at 15:59
Hi it's been 4 /6 weeks since Iv last been on line.so much has happened in this last 6 wks

I had my biopsey results come through which confirmed positive with the Gleason score of 7. Within 2 days they had me in for an MRI scan & then the next day followed a bone scan.

All this happened between the 10th & 16 th of Dec. So we had to cancel our holiday which was booked for the 14 th of Dec. Not that we minded because all these scans were more important than going away.

The only thing was with the xmas & New Year period it delayed getting the results of these scans till after which has been a very anxious time. We only just got the appointment last week 11th to see the consultant to get the results. Any way we seen him and he said as far as they could tell the cancer is confined to the prostrate & has t spread to the bones. Wow that was good news in one way. He then went on to say what options there are for me. He stated surgery to have the prostrate removed or radiotherapy. He said it's an aggressive type of cancer & it needs dealing with within the next 6 to 8 weeks.

Wow it's still an awful lot to get my head round, I DIDT like any of the side affects that was involved in both procedures which he was explaining to me. I'm still finding this all so difficult to deal with as all this has happened within a 6 wk period.

I had to tell my son as he could pick up something wrong with me, God that was the hardest thing Iv ever had to do, we both just held each other & cried it was so so difficult to see the pain that he was going through because of what was being said to him. Well we've now moved on from that step & are trying to be more positive. In fact he is doing more research to see if there is anything else available then what's been offered.

Does anyone know anything about the PROTON BEAM THEARPY IN THE Czech Republic. My son has been reading up on that & it sounds quite positive can anyone give any advice on this.

Sorry to go on, but I just wanted to bring you up to date of where I'm at at the moment. Look forward to hearing from you.

Many thanks

Mike

User
Posted 14 Jan 2017 at 17:11

Can't help with out enquiry Mike but just to say I'm thinking of you all.

Such a difficult time this - when you have to make a decision.

I'm sure others will, as usual, will be along to advice

We can't control the winds - but we can adjust our sails
User
Posted 14 Jan 2017 at 23:40

Hi Mike

Sorry to hear your news. I know how you feel re the decision - none of the options are attractive. As others will likely say, life is more important, but I still find it hard to come to terms with the side effects.

Timing is not great for us as new treatments are appearing but they aren't available in this country. Another member, Claret, has been doing a lot of investigation into other solutions for her husband - check out some of her posts to see what she has discovered. The problem may be your staging but worth exploring. If you want to review other options overseas, you will have to get all of your data together including the MRI scans, so be prepared if you want to pursue that.

Good luck.

Chris

 

User
Posted 15 Jan 2017 at 01:12

The tension is whether to have treatment that is tried and tested where you pretty much know what the risks are OR you go for a newer option with very little guarantee that it will cure you and no data on long term effects. I think in general, older men may feel more willing to risk the innovative while younger men really want the best chance of a cure - there is no magic bullet that cures cancer without any unpleasant stuff, as much as we would all like there to be. I know I would have discounted any treatment for John that no-one can prove 10 year outcomes for. He, on the other hand, bitterly regretted the op for a long time and said he wished he had opted for a shorter life without side effects so perhaps he would have been more inclined to try one of these newer options.

As far as proton beam therapy goes, the data for PCa isn't that great so far - American research suggests that it has more or less the same success rates as EBRT and causes the same side effects re incontinence and ED. it is rather more successful as a salvage treatment than as a primary treatment.

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

User
Posted 15 Jan 2017 at 07:55

Hi Mike,

As Chris says above I have researched and discussed directly with the Drs involved 2 alternative private overseas options:

Focal Laser Ablation (FLA) that is performed in multiple centres in the USA (up to G8)

TOOKAD also known as VTP that has completed stage III clinical trials across Europe but is not NICE approved in the UK due to lack of equipment in the UK (G6 and G7(3+4) ) Single sided optimal.

As Chris said you need to gather your info if you want second opinions-

CD of a MpMRI scan (3T preferable)
MRI report
Biopsy report
PSA results

It does seem for some you have to ask otherwise you leave consults empty handed. However an e mail to a consultants medical secretary will usually sort out the mussing documents.

Our GP surgery has been fantastic and 100% understand why we are considering alternatives and are asking to be kept in the loop plus we are in touch with a UK guy who has been through the USA option (he is ski-ing atm which helped our spirits as my husband loves ski-ing!)

Kind Regards

Clare

User
Posted 21 Jan 2017 at 11:44

I hope my own story can help to alleviate some of the worries weall have when diagnosed.

I had no symptoms and only found out after my physiotherapist did a PSA test to look at bone chemistry ( I have chronic back pain). The result was 8.9, which is double what it should be for my age (66).  My GP did a rectal exam and referred me to the Urology Dept.  They did an MRI, follwed up by biopsies.

Please, do not worry about having biopsies.  I had oral and IV antibiotics, then lay on my side. The rectal probe is only about as thick as your thumb. Just relex and let it in. Next was a local anaesthetic jab, which I hardly felt.  Then the dreaded biopy needles!  To be honest I didn't feel these at all.  You just hear the click as the biopy is taken.  I had 12 taken.  After that I came home.

The first 2 times I went for a pee, there was a bit of blood and it also appeared in my semen for a few days.  No pain, no discomfort.

I got my diagnosis a couple of weeks later.  In the meantime I had done a lot of reading and research.  A word of warning.... IGNORE all the American stuff.  They will tell you about many treatments available, but a lot of them are still experimental and not available here. Also, they just seem to be advertising themselves.

Next I met the surgeon who explained the results and told me that the cancer was on the left-hand side and totally contained, although right up to the margin. It was deemed too agressive to leave alone.  The options were robot-assisted surgery or radiotherapy/hormones.  I met and oncologist from the Christie hospital who told me that she would put me on 6-12 months of hormones, followed by 22 sessions of readiotherapy.  She ruled out Brachytherapy, which I would have liked.  I really didn't want the side-effects of hormones or external beam therapy, so decided there and then to have the surgery.

I must stress that the doctors I saw were careful to explain fully, their own treatments.

I had my surgery at Stepping Hill Hospital in Stockport on 2nd December 2016.  I think I was asleep for 5 hours.  I woke with 5 small wounds, a catheter, but no drain.  The only painkillers I had were paracetamol and ibuprofen.  I was allowed home the next afternoon.

The wounds were quite painful, but I had no pain inside for over a week.  Unfortunately my body didn't like having a catheter and I had painful spasms when my bladder tried to expel it, along with urine by-passing it.  I realise that not everyone has this but I wasn't warned.  The catheter and staples came out 12 days later ... such a relief.  After passing 3 urine samples and scans to show my bladder was emptying sufficiently, I came home, wearing a rather large pad in my pants!  The urology nurse gave me a bag full of information, pads, etc., from Prostate Cancer UK.

Now, 8 weeks later, I only have a tiny bit of stress incontinence. I have never wet myself and only use one thin pad a day.  I do not pee while asleep but do have to get up a couple of times to go to the bathroom.

I saw the surgeon this week, who told me that my PSA was 0.01, indicating that the cancer has gone.  There will be a follow-up in 6 weeks.  He also prescribed daily Viagra for a few weeks, along with a vacuum pump, to help get my erections back.

The message I would like to get across is that you should listen to the experts, do your own research and don't put off treatment, just because you are worried about the side-effects.  If I hadn't had the test, I wouldn't have known I had cancer and 5-10 years down the line it wouldn't have been curable.  I feel so lucky.

User
Posted 21 Jan 2017 at 16:28

For an individual, choosing his treatment can be very difficult, increasingly so if several of the growing number of treatment options are open to him. It may be that particular concerns about one form of treatment and/or potential side effects may be a deciding factor as the general opinion is that there is not a lot to choose between success rates of various treatments. However, some consultants, particularly surgeons, take the view that if the cancer is confined, surgery is by far the best choice and one of the most eminent UK surgeons has expounded this in some very strong remarks in which he says radiotherapy is not a long term solution. http://www.theprostateclinic.org/prostate-cancer-information-centre/choosing-a-prostate-cancer-treatment-brachytherapy-vs-surgery/

Edited by member 21 Jan 2017 at 16:39  | Reason: Not specified

Barry
User
Posted 21 Jan 2017 at 23:16
Many thanks for you messages, it all helps . Thank you.
User
Posted 28 Jan 2017 at 12:13

. I'm not in a good place at the moment as my mind just will not switch off regarding this diagnosis of having Prostate cancer. I seen the radiotherapy ongolist last Friday 20th Jan. Who explained what treatment I would have if I chose to have radiotherapy treatment. He said I would be put on hornmorne tablets for one month as well as having injections for the last 2 weeks of that same month with the tablets before the radiotherapy started. Then the radiotherapy would begin which would be 5 days a week for 4 weeks. I asked what the injections were for & he said that's to stop the body from making testosterone as the cancer feeds off of it. He said the success rate was about 80%. He said between surgery & radiotherapy they were really both the same with very little difference of side affects or recovery.

I asked him for his opinion on the Proton Beam THEARPY & he really did t rate it for prostrate cancer, I told him that I had read that the side affects were a lot less than the radiotherapy or surgery what was on offer by the NHS but it was quite adement that it was no better than the radiotherapy that's on offer.


I am so confused with it all, the statement that I have read from people that have had the proton beam THEARPY all rate it very highly & state that the side affects are no where near like with the surgery or the radiotherapy.


I have an appointment this Monday 23rd Jan with a surgeon to discuss surgery & for him to put his views across why I should have surgery. Then I'm suppose to make a decision on wheather to have surgery or radiotherapy. My gut feeling on all this still makes me lean towards the Proton Beam THEARPY but this is so so differcult. At the moment it feels that I just can not get away from this, I'm not sleeping of a night time, it's on my mind 24 7 . Just feel like running away from it all if only that was possible.


I had another procedure perform on me last Monday 23rd Jan that was the Cystoscopy where they put the fibre optic camera down the penis to get in to the bladder to have a look. They've decided that they now want to do a biopsey on my bladder as they've said there's abnormalities showing. This was not a nice procedure to of had done, they said the biopsey will be done under full anaesthetic. This is another worry on top of everything else as you think is this going to show up as cancer.


It was only 6 weeks ago that I went to the gp thinking I had a water infection & all this has turned out to be cancer, it's all been such a shock & being thrown in the deep end & having to decide such important decisions in such a short time and not really knowing what the out come is going to be. Sorry to go on I'm just so over welmed with all that is happening to me.


I'm still trying to get more info & advice on this Proton Beam THEARPY, if there's anyone that knows of anyone that's had it or anything about it I would be most greatful to hear from you.


I'm trying to get my medical records regarding the diagnosis of my prostrate cancer but that's seems to be another headache as the system the NHS has seems to let there selfs down it's almost been 2 weeks since I requested these & no one seems to know where there up to at the moment.


I'm suppose to be making a decision which treatment to have before the 3 months is up which the urologist said cause he did not think it should be left and the sooner u can make a decision the better. I'm already coming up to 8 weeks now.


Many thanks matty60

User
Posted 28 Jan 2017 at 14:06

I think you have read something about proton beam therapy, misunderstood it and as a result have stopped listening to the doctors who know your case. Currently the only proton beam treatment in the UK is low dose and suitable only for eye cancers and although the NHS is planning to install a small number of machines by 2018 these will only be for some children's cancer or eye cancer, and possibly brain tumours in the future. The data from America indicates that it is no better than normal RT for prostate cancer and does not reduce the risk of side effects. What proton beam therapy does seem to be good at is treating prostate cancer that has come back after other treatments ha pave failed.

So wherever you have read that proton beam treatment is better than other options, this is not supported by the research. If you are really determined to talk to someone about proton beam, you could go to Prague or Germany to see the doctors there though.

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

User
Posted 13 Feb 2017 at 22:27

Hope you are doing a little better Mike and managed to make a decision.

Sending my best wishes to you. Keep strong. x

 
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