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new boy, first day at school!

User
Posted 01 Jul 2019 at 17:07

Hello all,  

I was not planning to join a prostate cancer support group, because I was planning to get prostate cancer! So, where to start?  I was diagnosed last week by accident, I was having a scan of my bladder and the urologist vfound I had an enlarged prostrate. Within 9 days, I have had a PSA  test, a MRI scan and a "digital" exam. I am not havig a biopsy because of other health conditions (I have secondary progressive M S ). My head is spinning and the M S has kicked off and I am trying to make sense of it all. Any advice where to start would be very welcome! thanks

User
Posted 01 Jul 2019 at 17:31

Well , i think the only way that prostrate cancer is diagonised is by a biospy ? I stand corrected ? There is a big step from enlarged prostrate to actually having cancer . 

User
Posted 01 Jul 2019 at 18:57

Gorry,

What was your PSA?
What was the finding of the MRI (sometimes given as a PIRADS value, and locations).
Do you know where in the prostate the cancer is?
It helps us to help you if you can include your diagnostic results, symptoms, etc in the bio in your profile.

Malcolm is right - a large prostate (probably half the people of your age) doesn't mean cancer. It can be a sign of benign prostate hyperplasia (BPH), but as the name says, that's benign, not malignant.

What was done in the week before the PSA test? Things like digital rectal exam (DRE), or cystocopy (camera up your dick) will push up the PSA level for a week. So will riding a bike or ejaculating within a couple of days beforehand.

An MRI and PSA can suggest prostate cancer, but like Malcolm says, I think they have to have biopsy samples to confirm it. Does your condition allow you to have a general anaesthetic? If so, a transperineal template biopsy could be done (and is much better than the TRUS biopsy done in outpatients anyway), but requires booking theatre time.

User
Posted 01 Jul 2019 at 21:17

Hello Malcolm4, thanks for the reply and your comments. Form what I gather the medics were going to do a biopsy, but I said no due to the MS. The Urologist said that it was "highly probable" that I had cancer, based on MRI, PSA and a bone scan. What he could not say was what sort of cancer it was (fast or slow growing) and if it had spread! It seems it was seen on the outside of the prostate. To be honest, trying to deal with MS and a cance diagnosis and the family and, and, and, I'm  really not sure if I'm coming or going. I am going back to the hospital in a little over three weeks, but I'm  not quite sure why and what they are planning to do to me. As I said in my first post " first day at school! 

User
Posted 02 Jul 2019 at 00:28
Hi Corey, hope you get all the support on this great forum that I've had but I've got to say you're O/P was somewhat flippant.
User
Posted 02 Jul 2019 at 01:12
Sometimes where the PSA is very high and others tests also point to it, Consultants can assume a man has PCa without having had a biopsy. It could be helpful if you can post under your Bio more precise details of what has been done so far to include what figure the PSA was. If you do not have this information you should be able to get it from the hospital or your GP. Should it be thought that you do have PCa it's likely your next appointment will be to discuss various treatment options for a man in your situation and with other complications. I would suggest you have someone accompany you at this meeting so that you can confer afterwards, because it is not always possible to take in or remember all that may have been said.

Do let us know how you get on.

Barry
User
Posted 02 Jul 2019 at 08:56

Hi, thanks for your reply. What is an O/P? and also, I did not get the point about me being flippant,  perhaps you could expand?   Gorry

User
Posted 02 Jul 2019 at 09:01

I’m pretty sure O/P means original post?

User
Posted 02 Jul 2019 at 09:28

Hi,

I'm not clear why the MS is stopping you having a biopsy, as a biopsy would answer so many questions, remove the 'not knowing' source of anxiety and help guide a way forward.

Although it is an 'uncomfortable' procedure, it's pretty quick, rarely painful and the risks attached are  low. Most people, I think, would say that the benefits more than outweigh the risks by a long way ... Unless there's some MS-specific risk that I'm not aware of?

Edited by member 02 Jul 2019 at 09:32  | Reason: typos

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 02 Jul 2019 at 09:33

I know three people that had the TRUS biopsy procedure and two had bad infection despite IV antibiotics. IMHO it’s got obvious benefits for those unable to have a General Anaesthetic, but punching through the rectum wall into the body seems so archaic, plus it can only check half the prostate leaving the other half possibly hiding PCa

Edited by member 02 Jul 2019 at 09:38  | Reason: Update

User
Posted 02 Jul 2019 at 09:38

There are risks in every procedure, but statistically, prostate biopsy risks are low. I really don't think the experience of your contacts is typical.

In medicine everything is archaic as soon as there's a better way: leeches were archaic for 50 years, now they are a valuable medical therapy!

At the moment, there is no method of diagnosis better than a human eye on one end of a microscope and a bit of tissue on the other end.

Scans can provide much useful information, but, at this point in history, they simply do not give a full picture.

Edited by member 02 Jul 2019 at 09:39  | Reason: typos

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 02 Jul 2019 at 10:27

Hello folks  many thanks for the replies and advice. I mentioned the issue of having a biopsy  with MS. It is I, not the medics who has decided not to have a biopsy. The reason for this apparently irrational decision is because anything that affects me negatively seems to set off the MS symptoms. The MS symptoms I have day to day are quite bad enough without adding a trigger for more. My thinkng at the. moment  is to just let this  prostrate  problem run its course, accepting treatment as and when  needed to minimise both the MS and the prostrate cancer symptoms. I accept that the cancer will probably kill me off, but then again so will the MS!  What I need to do is find out what I need to know to try and manage this new chapter in my health (or lack of it!). Certainly, the posts I have received  so far have been really helpful and they are raising new thoughts and questions on my mind. Thanks to all and keep the advice coming.  Gorry

User
Posted 02 Jul 2019 at 10:40

That makes sense.

Take a look at the ToolKit, and I'm sure we can clarify anything that doesn't seen to make sense .

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

 

.

-- Andrew --

"I intend to live forever, or die trying" - Groucho Marx

User
Posted 02 Jul 2019 at 10:44

Originally Posted by: Online Community Member

Gorry,

What was your PSA?
What was the finding of the MRI (sometimes given as a PIRADS value, and locations).
Do you know where in the prostate the cancer is?
It helps us to help you if you can include your diagnostic results, symptoms, etc in the bio in your profile.

Malcolm is right - a large prostate (probably half the people of your age) doesn't mean cancer. It can be a sign of benign prostate hyperplasia (BPH), but as the name says, that's benign, not malignant.

What was done in the week before the PSA test? Things like digital rectal exam (DRE), or cystocopy (camera up your dick) will push up the PSA level for a week. So will riding a bike or ejaculating within a couple of days beforehand.

An MRI and PSA can suggest prostate cancer, but like Malcolm says, I think they have to have biopsy samples to confirm it. Does your condition allow you to have a general anaesthetic? If so, a transperineal template biopsy could be done (and is much better than the TRUS biopsy done in outpatients anyway), but requires booking theatre time.

 

 

hi gorry 

 further to Andies post.  not much to comment on unless you can update your bio  etc  or post values.  Also the stage of MS and how that effects daily living now.  Even if you do nothing at all are you expecting future PSA tests ?

best wishes Gordon  

User
Posted 02 Jul 2019 at 10:56
Hi Gordon, the only definite info I have is my PSA is 15 (or maybe 17) I dont know the results of the bone scan, MRI or digital exam other than it is "highly probable" that there is cancer there. I am due to see the medics in a few weeks, but that might be about treating an MS bladder problem (I may be having botox into my bladder). To be honest, this has all happened so quickly, I am playing catch up. From first going into the local hospital about blood in the urine to competing this first round d of tests was nine days. Good result for the NHS, but not quite so good for my limited brain. I think I will try to get to my local support group who meet fairly close one a month. Thanks for everyone's Interest . Gorry
User
Posted 02 Jul 2019 at 11:08
Gorry,

Rightly, men deal with the possibility of PCa and diagnosis in their own way. Some are a little flippant but this may mean it's their natural way of dealing with things or even outwardly covering up their concern, so I would ignore unnecessary comments which are rare on this forum.

As regards biopsy, I have had both the TRUS and the template ones without any significant problems and would rather have either again than go to my dentist for work! Biopsy does enable cancer to be targeted and treated more specifically and before ruling out this definitively my suggestion is that you discuss your situation with one of the very experienced nurses on this site. Also, if you have not yet done so, I suggest you download or obtain a hard copy of the 'Toolkit' from the publications section of this Charity. It provides detailed information about the disease and various treatments.

Treatment does not necessarily mean cure for cancer but it can slow it's advance in many cases. Having said that, there are men who decide to take their chances and have not have any treatment whatsoever or just have Hormone Therapy (HT), mainly by a periodical injection.

Do let us know how you get on.

Barry
User
Posted 02 Jul 2019 at 17:38
Hello Barry, thank you for your supportive reply, I an not a great user of these 9n line peer groups, so I'm fi doing my way in terms of conventions of communication . As I mentioned the only definitive data I have is the result of the PSA test which was 15 or maybe 17, everything else is as a result of a couple of very quick conversations with medics. I do, of course understand and agree with the point you are making regarding the benefit of a biopsy in terms of both diagnosis and treatment, however, on balance there seems little point in doing anything that might trigger an MS relapse given I am not going to get my prostrate cancer treated. If and when more information is available. or if there are symptoms that become troublesome , at that point I will engage in palliative care, however, it is far more likely the MS will be the central cause of a reduction in the quality of life long before the prostrate gets really bad. My problem with this diagnosis is much more to do with supporting my family through it and doing what I can to reduce aggro from either. I have to admit, I might have got this wrong, but I have not found the instruction book of life yet!

All the best Gorry

User
Posted 02 Jul 2019 at 22:34

Gorry,

If you decided not to have curative treatment (and I'm certainly not recommending this), there are still things you can do to slow the cancer's progress.

You could consider hormone treatment to suppress testosterone. It has a number of side effects of its own, which you would need to look through and see if they might be an issue for you (some of them are a big issue for some people, and others don't get them). You could try it and bail out later if you got a side effect you don't find acceptable. It works for a while, but eventually the cancer mutates and finds a way to grow without testosterone (said to be "castrate resistant'), typically after 2-12 years.

Here are some other drugs you might consider too.

Metformin is normally given to diabetics (and pre-diabetic in some cases). However, it was found by accident to extend the length of time hormone treatment works, and there seem to be a number of other possible benefits for PCa patients. There is a trial going on to work out the most effective dose, but you might ask your doctor if you can go on it anyway, as it may slow progression. My doctor was happy for me to do this.

You could look at self-medicating with modified citrus pectin (MCP). Some trials were done with it 10+ years ago, all with positive benefits, but because it's quite cheap and not patentable, there is no big-pharma funding any research. It blocks the receptors on endothelial bone marrow cells, which prostate cancer uses to metastasize to bones (and I think one of the trials found the same with the liver). It won't completely prevent mets, but was found to significantly slow them, and has no known side effects (except for people allergic to lemons).

Pomi-T is a food supplement of 4 or 5 food items which are believed to help slow prostate cancer, and many PCa seem to use it.

Edited by member 03 Jul 2019 at 00:11  | Reason: Not specified

 
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