I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Concerned about Prostate Cancer.

User
Posted 06 Mar 2016 at 15:14

Hi, first post but been lurking a while...Hopefully someone will be able to alleviate some of my fears.

I'm 30. A few months ago I went to the doctors about ED. I was concerned enough about this at such a young age. This came after my wife and I tried unsuccessfully for a year to have children. From there, I began to notice other symptoms. I've always had 'trouble' beginning to urinate and in addition, the urge to urinate can suddenly come on very quickly. I developed pain in my lower back and legs and have lost a significant amount of weight in a short space of time (I've always been slim but am now ridiculously so, have lost just under a stone since mid January). From trying for kids, the doctor told me I had a low sperm count. Not sure if this is relevant?

So to cut a long story short, I ended up having the blood test and being sent for a biopsy. I got the results a few days ago. No cancer found, but I have been advised that another biopsy is a wise option.

Foolishly, I decided to deal with this by myself. Before I became aware of prostate issues, my girfriend walked out on me leaving me to deal with this by myself. I regret not taking anyone with me to discuss results because I can barely remember a thing! So I hoped someone may have experience that could offer. I'm going out of my mind with worry, not knowing is awful and I really can't see the "not finding anything" as a good thing.

From what I understand, my next step would be talking to my GP. My PSA is still raised so another blood test is likely the first step? From there, I presume from reading these forums that an MRI and template biopsy may be on the cards. I really can't get my head around why the initial biopsy would not show anything and why there is a need for another. There is obviously something 'wrong', but to what extent I don't know. As I said, the waiting is killing me, does anyone know how quickly the next lot of tests is likely to be? I've shared my concerns with a few friends and family now which is helpful, but it seems they 'don't know what to say'. I'm hoping someone here can tell me they know how this stage of the journey feels. I feel at 30 I am too young to be dealing with this, especially this form.

Sorry for the rambling nature and any glaring inaccuracies of this post, I'm trying to remember what I can. Any advice/info/guidance would be great. Thanks.

J

 

Edited by member 11 Mar 2016 at 12:13  | Reason: Not specified

User
Posted 06 Mar 2016 at 19:33

Okay JA85, you're here now so have at least got somebody to listen to you and I am sure that some of the others will be along too at some stage. There is often a delay while your first post is "moderated" but I expect others will see it now.

Firstly I am so sorry that your marriage has broken down. Trying for a much wanted baby causes untold strain as I know from family members. A low sperm count will make it harder for a woman to conceive. I'm not too sure what you are asking re whether a low sperm count is relevant to no pregnancy or to your other problems ?

What is your PSA reading?
Did the GP do a DRE (Digital rectum exam)?
Has the GP ruled out any kind of infection, such as urinary, as that can cause an awful backache.
The weight loss could be down to stress and the un-successful trying for the baby which must have put a dreadful strain on your relationship.
The ED could also have been as a result of trying for the baby. Maybe anxiety and desperation to get pregnant subconsciously caused the ED. With ED, whether it's caused by a physical problem or not, it can be made worse by worrying that you will fail so therefore it's self perpetuating.

Nothing foolish initially in trying to deal with a problem by yourself, but you know now how hard that is when there is so much information to take in, so I'm sure you won't make that mistake again. Your family and friends, understandably, won't know what to say.They want to reassure you but can't because you don't appear to be getting anywhere as far as diagnosis is concerned.

When did you have the last PSA, before or after the biopsy and when was the biospy.
I take it these were both Prostate cancer related tests and not other tests the GP/hospital was doing because of your other symptoms.
Another PSA test would not be a good idea right on top of a biopsy in any case as it might give a false reading.

30 is no age at all for any kind of cancer. You know your own body best so will be aware when things are wrong so go back to the GP and ask him to put in motion further investigation.

Please don't apologise for rambling. You are under a lot of stress - you're entitled to ramble a bit!

Advice and guidance? Well I hope others will be along to add their ideas but in the meantime I would advise you to take a big deep breath and step back from that gaping void you are looking into. Don't go looking for trouble. If it's there it will find you soon enough and you won't know any quicker by worrying about it.
All you'll do it cause yourself more stress and anxiety.

We ALL know what it's like to wait for results, every single one of us, so we really do understand how you feel, but you've got this idea in your head that you have prostate cancer and the idea is eating you away.

Try and stay calm and think rationally. Telling yourself it's cancer doesn't make it so. The proper tests and investigations will prove it, so get those put in hand.

You are, quite understandably, very upset and anxious and I really wish there was something I could say to make you feel better.
You are young enough to be my son, in fact you are a lot younger than my son, and if I were your mother I would be nagging you to get back to the GP for advice.

In the meantime, please feel free to bend our ears about your fears. We do listen and we do it very well.

Best wishes
Sandra

 

Edited by member 06 Mar 2016 at 19:33  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 06 Mar 2016 at 20:38

Thanks for the reply!

Re the low sperm count. I know this is a likely reason for the lack of pregnancy (though she had fertility issues too) but I wondered if this may be a further symptom of prostate cancer? I've read conflicting information on that suggests yes and no...

My GP did rule out a urinary infection, sounds weird but I was hoping that it was the case! Also had the DRE, the results of which I believe convinced him to do the PSA test.

My PSA is 3. I'll admit I'm still not entirely sure how the PSA stuff all works, but know that it isn't a reliable indicator of anything. However, I also know it's fairly high for someone my age.

Re the weight loss. This has actually only happened in the past month and a half, 3 months after my wife left which is what worries me.

The doctor (not my regular GP) did say it would maybe be worth doing another blood test which did confuse me because I thought that would produce a false reading so soon after a biopsy (3 weeks ago) He did mention an MRI and template biopsy are likely options for the future but not sure how soon this would be.

I don't think of myself as a negative person, but I'm struggling to see how this couldn't be something fairly major. I've had symptoms for quite a while (typical bloke, ignored them for ages). I'm kicking myself for doing that too. I know that isn't rational thinking and prostate cancer is very rare in people my age but I don't mind admitting I'm absolutely terrified over this.


Edited by member 06 Mar 2016 at 21:30  | Reason: Not specified

User
Posted 06 Mar 2016 at 21:35

Hi JA85, First of all welcome to this site that no one wants to have to be on but now you are here there will be others that can help you as you get to various stages of your tests.

The main thing that everyone will say will be not to worry as much as you are as worrying gets you nowhere, we have all been where you are now and lack of knowledge contributes to the worry.

As for your PSA result then 3 is normal and not usually something to worry your GP about on its own but given all your other queries relating to all things down below then further investigation would be wise.

Having a standard biopsy will not be able to tell, one way or another, if you have PCa and it seems common practice now to have an MRI scan so that if there is anything found a "targeted biopsy" can be undertaken. Also a bone scan will probably be done, all results will then be discussed with you as to their outcome.

You are not negative if you are considering various outcomes but with that you also need to be positive as well, to find a balance, use information to assess the state of play then act upon that. You will only be deemed negative if after being given advice you then take no notice. At the same time it is the waiting and fear of the outcome that is playing on your mind so try to avoid being doom and gloom.

Your GP will be doing tests to rule out various conditions and will be taking all your symptoms onboard to try and discover what is occurring with you, it may be one of several things going on at once.

There are some extremely knowledgable people on here that can explain your results so that you can understand them, you will need to give facts and figures if you can so when you see any of the specialists take a notepad with you to write down any details given to you and better still take someone with you so that there is an extra pair of ears. Information and detail can be forgotten or missed when sat in front of someone giving you news that you would rather not hear.

Try to stay positive.

Ask any questions you like on here as often as you want and we will all try to help you.

Best wishes Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 06 Mar 2016 at 22:44

Hi JA85,

A TRUS biopsy can be targeted at an area of the Prostate where DRE leads to suspicion but if cancer is well contained it's really stabbing in the dark. However, a more targeted Transperineal Template biopsy can be done if an MRI shows an area(s) of possible cancer. However, a really clear MRI cannot be achieved until the damage and swelling caused by biopsy to the Prostate has had a chance to heal. This could be about 4 weeks post biopsy.

I think your best course of action meanwhile is to confer with your GP to check out other possibilities as you may not have PCa.

Barry
User
Posted 07 Mar 2016 at 13:44

JA85

Sorry you find yourself here especially at your age. It does not always have a bearing, but is there any history of Prostate Cancer in your family ?  You mentioned sperm count, my volume of semen diminished which I put down to old age. Have you changed your eating habits since your wife left, could this account for your weight loss. As already mentioned PSA test is not totally reliable, but are you aware things can affect the level of PSA in the blood , rectal examination, rectal biopsy, riding a bike and ejaculation for example. 

Easy to say but stay positive.

Thanks Chris 

User
Posted 08 Mar 2016 at 07:46
Ja85

Breathe!!

Not much to add to what everyone else has said. You asked why the biopsy didn't show the cancer if it's there. Think of your prostate as a potato with a bad bit in the middle. If you put a skewer in, youve got to actually put the skewer through the bad bit to see it. If you miss it with the skewer, you don't know it's there.

30 is young. The youngest person I've seen on here with prostate cancer is 43. Average seems to be around 60-65. It seems unlikely. What seems more likely is that your ED is due to you feeling you need to try harder to conceive and your weight loss is due to the stress of your relationship breaking down. You sound very anxious, and this will cause weight loss.

Try not to panic, I would go back to wherever you had the biopsy, and ask them for a telephone consultation to discuss results. Write down what they say!

Louise

User
Posted 16 Mar 2016 at 20:14
Thanks for all the replies. I've been booked in for an MRI and second biopsy a few days later. Am I right in thinking the results of a second set of tests shouldn't take two weeks?

Been doing lots of reading on 'localised prostate cancer'. Is it possible (worst case scenario) for the cancer to be limited to the prostate but still have back, leg and pelvis pain?

Thanks

User
Posted 16 Mar 2016 at 20:30
Hi

Although you are only 30 and I believe that Pca is vanishing rare in someone so young, something must have caused a need for a second biopsy and certainly, I don't think a PSA of 3 is normal for a 30 year old, so that could be one reason. In any case, I'm glad you are having the next set of tests, it should clarify matters for you. Most tests seem to take 2 weeks for the results to come through, mainly because they have to be reviewed before they can be given to you.

Regarding pain, the problem is that so many things can cause pain in the body, especially the back, it's impossible for anyone here to tell you if it could be Pca related. I think he only thing you can do is to wait and see. I sincerely hope this isn't Pca but if it is at least it would have been caught early. Did you know that you can ring the nurses on the Pca main site? They would be better placed to help you. I can well understand your worries, waiting for results is awful (we all know that feeling here).

I just wanted to stop by and say hi and hope to help to support you through this difficult time for you

Best wishes

Devonmaid

User
Posted 21 Mar 2016 at 18:38

I believe that the time it takes to get the results of the scan depend on your hospital and/or consultant. For instance I recently had to have a scan and was told that the results would take one to two weeks. However, I had the scan late Saturday morning and had the results by early Monday evening; i.e. it took just over 48 hours or me to get the results.

User
Posted 07 Apr 2016 at 00:27
So an update.

I really am incredulous. At the age of 30, I have been diagnosed with localised prostate cancer.

Completely knocked me for 6. Not sure what to do next? Specialist has said given my young age and likelihood of it spreading (perineurial something?) that I have surgery to take my prostate out. I can't say I'm keen on this given the side effects.

I know HIFU is very expensive but for someone my age, it seems the best way?

I genuinely can't believe this. Still doesn't feel real, as if it's happening to someone else and Im watching on tv....

User
Posted 07 Apr 2016 at 01:01

Sorry to hear that J - certainly very rare at your age but not impossible. You might find this guy interesting to follow http://www.huffingtonpost.com/gabe-canales/prostate-cancer_b_3891570.html - he was diagnosed at 35.

Not sure why you are mentioning the expense of HIFU - that shouldn't really be your concern. What matters is to see a range of specialists and find out what each of them would recommend in your situation and with your stats. You haven't told us what your Gleason score or staging is - these might make a difference to which options are available and/or recommended. At such a young age, I would want to talk to
- a specialist on brachytherapy
- a specialist on radiotherapy
- someone that does HIFU and maybe cryotherapy
- a dietician
- someone about banking some sperm

As you are in Leeds, I assume you are at Jimmy's? Great urology team, great oncology team, and some really interesting research / trials going on. I imagine you will be a bit of a celebrity down there - I will look out for news of you!

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

User
Posted 07 Apr 2016 at 01:10

Hi J85 - so sorry to hear that it turns out that you do have prostate cancer. No wonder you're in shock! I am still feeling the same a couple of months after my fiance's diagnosis (God knows what it must be like for you men). I am sure that people will come along who have experience with the stage that you are at and will offer advice. (My fiance is at a different stage). Also, this site do a wide range of publications that can be ordered or downloaded for free (go to the homepage, click on "prostate information", then "our publications", then click on "see all publications" or alternatively, enter a search term). They have a fact sheet on HIFU as well as a booklet for newly diagnosed men, a fact sheet on localised prostate cancer and a toolkit with various publications within it (to name just a few). The nurses on the helpline are also a good resource. I know that with localised prostate cancer, the aim of treatment is to cure you of this disease so try to remain as positive as you can (I know - it's not easy!).

User
Posted 07 Apr 2016 at 02:26

Hi J85,

It's bad enough getting PCa later in life but particularly unlucky for someone so young. In your situation I would be open minded about all forms of treatment and go with a plan that was agreed would provide the best chance of a cure or initiating treatment that would maximise my life span if this can be determined. Much will depend on your diagnosis. Certainly, look at all possibilities. Hospitals usually will either provide details of your histology and diagnosis and pass these over directly to other outside specialists or will provide details and put scans on discs should you wish to arrange alternative opinions. (sometimes a small charge is made for this).

Barry
User
Posted 07 Apr 2016 at 06:44

hi J85
not able to add much from what has been posted, some very good advise as normal, but not normal for yourself, be 100% in what you decide, don't be rushed and we will all be here for you

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 07 Apr 2016 at 08:25
Hello. I just thought I would say that we have a friend that had his prostate removed when he was quite young. Not quite as young as you, I'd say 40ish. He suffered very few side effects which I can only assume was due to age. He says everything works as it should. I have no idea how long it took to get back to normal as I wouldn't ask. He said the only side effect he is left with is no ejaculation. So that is something you need to think about. But they should ask you about that anyway. They asked my OH before brachy if he needed to store sperm.

Wishing you all the best.

User
Posted 07 Apr 2016 at 09:43
I've slept on this and weirdly feel positive. Have been waiting for an answer for months and now I have it. Trusting in the professionals who's job it is to look after me and I know I'll be fine in a while.

Gleason rating of 6 so I know I am lucky in that respect I suppose.

Thanks all for the best wishes. I really don't understand why, but feel better than I have in a long time.

User
Posted 07 Apr 2016 at 12:25

So pleased that you're feeling better today http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

 
Forum Jump  
©2024 Prostate Cancer UK