Help and advice?!

Prostate cancer

A group for anyone affected by prostate cancer to get together, ask questions, share experiences and support each other.

Help and advice?!

No. of entries: 14 | Posted on 28 Apr 2013 10:23

Help and advice?!

  • Hi, I have joined this group as my dad has been diagnosed with prostate cancer 3 weeks ago - since that time no one has told us anything really and I think my dad is too terrified to ask! I believe his PSA was 70 and he has had pain in his back and hips for 18 months but until this diagnosis the dr was saying he'd pulled muscles etc as he plays alot of golf and they had been referring him to a sports massage person, to which he has been going!! He has had a biopsy on Thursday and two body scans but they are saying the results won't be in for two weeks! I am being selfish but I am in bits, I can't think past tomorrow and I am just thinking the worst all the time as we have no clue what we are dealing with. My dad is my world, he is my children's world - he takes them to swimming club, football and golf. I just don't know what to do! I think the situation is made worse as he lost a close friend to prostate cancer many years ago- he died 3 weeks after being diagnosed!?! I am trying to stay positive and continue with life as normal but it's so hard just not knowing how to help him or actually what the full diagnosis is? He also gets lots of pins and needles in his foot just in the one leg, the same one with hip pain? Is this normal? So sorry if I have gone on and on - its just so confusing - the wait of not knowing is awful?! Many thanks K
  • Hi Kells,

    I am totally with you on this, and  I have recently replied a post exactly the same as yours !!

    Please go to "Latest Activity" and see the post under "Amandajd" It will outline the problems you are experiencing and hopefully put your mind at rest. If not come back to me and I will see if I can help.

    Kind Regards

    David

  • Thanks David, I have read your response and it was very helpful. I think my biggest worry is that he has had back and hip pain for 18 months + so could the prostate cancer have advanced to the bones as it seems from reading this happens? And if this is the case what is going to happen? I know I am just panicking and I am sensitive to everything at the moment - little things like my boys wanting to go to Legoland for grandads birthday as that's what we do each year and I have a little one year old daughter and no pictures of her and my dad together! Silly things I know, but when I have no idea of what I'm dealing with it makes it so hard to look forward. I am normally a really positive person! My dad is just such a lovely lovely man who does anything for anyone and even at my age of 34 I am such a daddy's little princess. It's just so hard! Thank you again for your reply it is very helpful. K.
  • Hi Kells, 

    I do know how you feel, I also had a long period of back pains, my GP sent me to a back specialist, who could not find anything wrong, I was even sent to a pain clinic and underwent a quaterzone injection into my spine under Local, Boy that was bad.

    However when I was later diagnosed with Prostate some 2 years later, my consultant was not impressed that no one had even considered prostate problems when they could not find a cause for my back pain. If it had been discovered earlier It would not have been so bad as it was. 

    So I'm not saying don't worry about your dads back pain it may just be as mine was, an indication of prostate problems. It does not mean that the disease has spread to the bones or any other area. 

    I do realise that you will worry and these problems are life changing. But you must be the support of both your dad and your husband. Of course your dad can take the kids out, He is not a cripple he will be able to manage everything. The treatment is not incapacitating or anything like that, and the last thing your dad will want is to be molly cuddled. Talk with him search the web for descriptions of treatments, get answers yourself, and ask questions to the consultants. They are not Gods or mindreaders. They will help, as well as the specialist nurses, they are very dedicated people and most helpful. 

    So to put it into prospective again, you are still daddies little princess, nothing will change that, you have to fess up to the fact that you must help him and you must be strong for the kids. Remember my driving phrase " Life is not a rehearsal, So get it right the first time" 

    Be Good all the best  David.

  • David, thank you so much. I am so glad that I have written on here, as your response is making me feel much better. My dad is not at a point at the moment where he will openly talk or look at sites, but I have and will continue to do so. Thank you so much. K.
  • Hi Kells

    My Dad was diagnosed on the 25th March aged 57.

    Thankfully has had a MRI and they have confirmed that the cancer is contained.  He is yet to commence any treatment and is waiting for a volume scan to confirm if Brachytherapy is a option, we strongly think it wont be without a course of hormone treatment.  If they wish him to commence hormone he is thinking of commencing radio.  Everything is all up in the air at the moment and it is all ifs buts and maybe.

    I, as you have said my Dad is my world and I cant bare to see him scared, he is my Daddy and he shouldn't be scared.  I have held it together in front of him apart from when they told me the news.  I will remain to be strong and will be with him every step of the way, behind closed doors it is a different story.

    I have two boys who dote on there Daddad too.  I will when we know what treatment my Dad is having tell them that he is unwell but at the moment they don't need to know and we will continue everyday as we have always done.

    I do wish though that my Dad would open up and talk.  Keeping it all bottled up inside must be driving him bonkers and I am concerned of his mental state should he not speak to someone.

    If you wish to private message me Kels your more than welcome too.

    Take Care x 

  • Sorry to hear about your Dad's diagnosis, Kells.  Try not to assume the worst, though - back pain is very common, especially as people get older, so it doesn't necessarily mean that the cancer has spread.

    Macmillan's info on prostate cancer might be helpful, if you haven't already seen it http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Prostate/Prostatecancer.aspx

  • Hi Kells, I am the wife of a 58 year old who was diagnosed in November last year. It is very scary and frightening, and Jim would not talk about anything to anyone, and still is very quiet about it.

    He had a radical prostectamy on the 18th February. They were convinced they would find he needed radiotherapy after surgery as the scans and PSA test indicated aggressive. significant cancer and it was, however the cancer was all contained within the prostate. His PSA last week is down to 0.01. so radiotherapy has been put on hold.

    He has waterwork problems which could be longterm. He also had back pain, however his job is quite physical, and as he says he is getting older, however it could be the prostate as he has now said the back pain has eased. The recovery has been difficult for Jim and he has been re-admitted three times due to the uncontrollable pain he was suffering from, however that was all to do with the raw nerve endings and his bladder, so the right medication is now making things easier.

    We or rather I, got worried about every little ache and pain. We have a wonderful set of Doctors from our local GP, the consultant, the Incontinence nurses and the MacMillan nurse who explained everything really clearly. And though Jim would not talk, he was always listening.

    Just one other thing, you dont always have to be strong, it doesnt hurt to admit you are scared. We have three boys also and we told them as much as they wanted to know, though they are older it was still their Dad.

    Good luck with everything.

    Alison

  • Hi Kells,

    I was diagnosed in March 2011 with advanced Pca .  I was immediately put on Hormone treatment. My gleason score was 8 and mets to the pelvis. I was asked if I would like to take part in a drug trial. I was put on the chemo arm of the trial and apart from a few problems and side effects it was ok. My PSA is down to .04 and am doing well at the moment.

    The first few weeks were very frightening for both my wife and myself but once treatment started things  began to settle down. The Oncologist was very informative once she had all the results and outlined the possible treatments. I am also fortunate to have the Nurse in charge of the drug trial available at anytime if I have any problems.

    The waiting for results is always very worrying but I am sure that once the results are available they will sort out a treatment plan and you will be a lot calmer.

    Fingers crossed for the results and that treatment starts very soon.

    Regards Bob p

  • Thank you so much to everyone that has replied to my worry. It is so nice to have people that understand and that can enlighten me with information. Thank you from the bottom if my heart. X x x
  • Hello Kells, I was 70 when I was diagnosed and your dad's case sounds similar to mine. I chose radio/hormone therapy over surgery - didn't want anyone cutting into me thank you very much. My urologist was very happy with my choice. She is very positive and claimed "We are going for a cure!" I am finished the radio and 4 months later my first appt. with the urologist - my PSA was 0,04 and 100% sure that the cancer is gone. I have to remain another 2 years on hormones - not happy about that as I do NOT like the side effects of this drug. She will see me again in Oct/Nov and IF my blood work shows continueing good results, she MIGHT take me off the hormones. Apparently tests have shown that 3 years on hormones gives the best chances of the cancer never coming back. I might add that here in the Netherlands they recommend that you take someone with you to your appointments - claiming 2 heads are better than 1 what with the amount of information you receive. My first letter from the radiologist cleary stated this in the letter. Through the whole process I have had my partner with me, then when we get home, we can rehash anything I didn't pick up. You are welcome to email if you desire. John, The Netherlands

  • Hi everyone, my dad still has no results is this normal? He has had a full body scan and a ct scan and a biopsy over a week ago but we still don't know how bad the cancer is, just that his PSA was 70! He is getting aching pains all over his body and I think he is telling himself that it has spread as I mentioned he's had terrible pains in his hip and back for 18 months! He also has pins and needles in his foot. This is horrible- waiting to know what us happening without any treatment options? My mum is in total pieces and I don't know how to comfort her, as we just don't know what is going on. Neither of us have slept properly now since he was to over 5 weeks ago!?! Is this normal for treatment options and results to take so long? It's horrid as I just keep thinking the worst and wondering whether my dad will be here this time next year!?!
  • Hi Kells,

    The NHS usually takes around a fortnight to read  a prostate biopsy so yes that's quite normal.  Your Dad's consultant may or may not have the results of the "full body scan"  ( was that actually a bone scan ? )  but that in isolation is not a basis for a treatment decision.  Does your Dad have another outpatients appointment to discuss all of these results ?  That's the way it's usually done, an outpatients appointment arranged far enough forward for all the results to be in.

    As for a treatment plan, well who knows ?  Treatment recommendations are usually made by the Multidisciplinary Team ( MDT ) at the hospital in question - this team consists of both surgeons and oncologists and the idea is to arrive at the best possible treatment plan for the individual patient rather than just recommending one doctor's favoured method.  This team usually meets weekly, although your Dad's local hospital may of course have different arrangements.   Because of some ambiguous MRI scan results it took me many months to get a treatment plan organised, which I only achieved in the end by making a formal complaint to the hospital.  However I must emphasise that my case was not particularly serious - my PSA was 16 and my biopsy results were Gleason 3 + 4 = 7  -  and I was not ill. Also I had been put onto hormone therapy while they made their collective minds up about other treatments.   As your Dad has been feeling poorly they will hopefully move much quicker with him once all of his results are in !

  • Hi Kells

    My husband had a radical prostectomy about three weeks ago, he is back to see his surgeon on the 15/5/13 so we do not know yet if he will be on any medication.

    If my husband was going through what your dad is I would be on the phone, trying to find out what is happening, firstly I would contact his specialist macmillan nurse  does your dad have a specialist nurse assigned to him he should have, if so contact them, if not ring your dad consultant secretary.

    No one should have to suffer that much so get in contact sweetheart, do not be intimidated they will help you.

    Hope this helps you.

    Jeniren x