Just saying Hi

And as you can see I am a useless typist!

Hi Orev,

A very warm welcome to the group. Everyone here you will find are very friendly, knowledgeable and helpful. Many of the guys you will find are going through exactly the same as you and at varying stages and wives (I am one of them) and partners are members and friends also. Millibob will be along shortly to welcome you. He is our Community Champion and extremely helpful, supportive and knowledgeable (he also has a wicked sense of humour and will no doubt make you chuckle)! There are also many regulars like Worriedwife and Alwayshope who have helped me enormously, to name but a few. My husband had a PSA of 252 in May and started hormone therapy immediately and has just had 18 days of radiotherapy with two days to go. He is doing really well. Have you had your biopsy, scans etc ? If you have more info like your Gleason score etc it will help people give you more relevant advice and support. Why have you not to start hormone therapy until January? Totally understand the sleep problems, my husband is up about 5 times a night (hence why I’m here at 2a.m lol) His problem is needing to pee multiple times through the  night but he’s hoping it will improve following radiotherapy. Ask any questions you like on here and you will find a wealth of knowledge and friendship. Once again, a very warm welcome Orev (Raven) love the name!

Regards

Linda

Hello Orev.

A very warm welcome to this exclusive club that you have found yourself being a member of, although we are very inclusive as all are allowed as long as they know someone with prostate cancer or have been diagnosed with it.

You say you have locally advanced prostate cancer so do you have your stats as this will give us a better idea of what you are dealing with and help give more targeted information. What we are looking for is the Gleason score, grade group, TNM ( tumour, node, metastasis), and any other information that you wish to share. LinP is quite correct that with a PSA of 168 you should be started on hormone tablets, usually Bicalutamide, as soon as possible followed by an implant after two weeks which will shut down your testosterone production and cut off the food supply to the cancer. The hormone therapy is usually started after you have had a nuclear bone scan which is routinely given once you have had your initial diagnosis to check whether there is any spread to the bones so maybe you are waiting for this to be done? If you have already had all your scans then I would push your doctor to start hormone therapy as soon as possible. Your medical team should give you a treatment plan and we can then hold your hand with what to expect and how to deal with any side effects. We are not medically trained but will try and guide you through our own experiences.

Sleep problems is common for a lot of people, either because of needing to get up to go to the loo or because of stress. Getting a diagnosis of any form of cancer is extremely stressful for both you and your family and should not be underestimated. Our oncologist told us at our first meeting that he could do 50%, the other 50% was down to us in terms of having a positive attitude and in lifestyle changes such as diet and exercise. It is important to try and get as fit as possible as this really does help combat some of the side effects from the hormone therapy plus it will release your bodies own endorphins which will make you feel better and help the bodies own healing mechanism. The standard diet recommendations are plenty of fruit and veg, cut down on processed foods and red meats, eat enough protein but try and include pulses and beans, reduce dairy such as cheese milk and yogurt (as there is some evidence this promotes prostate cancer growth particularly with aggressive forms) and substitute plant based milks, limit eggs to 2 or 3 a week, keep an eye on carbohydrate consumption as the hormone therapy will tend to make you put on weight round the middle, reduce caffeine intake as this can irritate the bladder and make you pee more particularly at night. Phew that was a marathon. As you are starting hormone therapy this can cause bone thinning so ask your doctor for a prescription for Calcium and Vitamin D.

The thing to remember is that locally advanced PCa is highly treatable. The doctors have something to help you with all of your symptoms if you have any plus any side effects from the treatments but you also have to help yourself along with a good bit of support that you get from the lovely people on here who have all been there, done that and worn the T-shirt. Another thing to remember is that 98% of people die with prostate cancer and not of it.

This is very much OUR community. You will find that many have a wicked sense of humour (me included) so it is not all serious. Some people just dip in and out for information, others are more active. It is what you are most comfortable with but just remember that you are not alone and there will always be someone here to listen to you.

I am one of the wives who is also awake at this silly o'clock like Linda and have been on this journey with my husband for the last 3+ years so don't forget that if you have a partner then they can also suffer and may need some support.

Please ask as many questions as you like no matter how small or silly you might think them, we have all done it. Stay strong and positive and come back soon with your stats.

Good morning Linda.

I am so glad that your husband is doing well with the radiotherapy and almost through it. What a relief for you both just in time for Christmas so it will be onwards and upwards from then on. Has your husband spoken to the radiotherapy team or doctors about the number of his nocturnal visits to the loo. The radiotherapy is possibly aggravating the situation and there are things he can take to calm it down and give both of you a bit better nights sleep. Once Christmas is over you are probably going to feel at a bit of a loss as the bustle of doctors appointments, scans and treatment will suddenly stop and you will be into the cycle of routine monitoring. You have been running on adrenaline for quite a while so it is important to look after yourself as well as your husband when this suddenly drops. I know it sounds silly but you may be more prone to picking up colds and bugs so be extra careful. You may also find that your mood drops so plan a nice treat. Most importantly keep all your new friends here up to date on your progress.

Have a lovely Christmas and New Year and ring that bell very loudly tomorrow so that I can hear it in Greece.

Thanks, Linda. Yes, it's not a comfortable wait, esp since I'm dreading the possible side effects, but the sleep thing has been with me for a while, just exacerbated by suddenly remembering "I have cancer," which can make it hard to ge back to sleep: a couple of half-hour stretches of wakefulness are not unknown, and sometimes it leads to some v difficult emotions. A mate recommended journalling, and it is helping:  I use it for saying positive stuff or saying the otherwise unsayable. Just recently I've started drawing too, which has its own sort of release.

Anyway, nice to hear from you and I'm sure we'll speak again. 

Hello orev and welcome, from a man, yes there are some on here, who also has LAPc. The wives have given some wonderful advice, as always, i find it odd too that you have not started treatment, you should talk to someone about this. like you i also go to Maggies which i would recommend to everyone. i wish you well on your cancer journey and please keep in touch have a happy Christmas, take care, Eddie

Hi Orev,

We are also fairly new to this PC. My husband started hormone treatment 4 weeks ago and so far it is working a treat. His PSA down by 60% and he said less pressure to go to the loo at night. First time in  a long time he slept 3 hours in a row without a loo break. 

This community is amazing with many inspiring journeys and positive attitudes and lots of knowledge from people with the same issues. 

I wish you all the best!

Love from Brighton

Dafna

PS Orev is Hebrew. right?

Hello orev  What a cracking name!! Well I am late to the party today - however a warm welcome to the online Prostate Community.

I have had my thunder stolen by all the good ladies and gentlemen of the forum and honestly can't add much more to what has already been said. It's OUR Community and YOU are a most welcome member (I know you didn't want to join us). We are all here with the same bond (Prostate Cancer). We are all on our own personal journey and are all happy to share what we know and to answer any questions you may have.

May I ask you to complete your online profile (it saves us asking you questions). To do this on your home page, click on the icon of the beach in the top right of the page - click on "profile" and then "edit". You can then add some details. You can read mine by clicking on my name (you don't have to write a book as I have done!!).

if you need anything - just ask - Best wishes - Brian.

Hi Orve, sorry just seen your post, welcome to our club, but I'm sorry to see you're here, ask any questions someone will answer, if you want to rant just do it and we'll join in.

All the best Ulls 

Hi, Dafna; yes I like ravens but "Raven" sounded like one of the X men!