Dad just diagnosed with aggressive PC

User

Posted 15 Feb 2015 at 16:55

Hi all,

This is my first post here. This seems like a supportive place to be with lots of knowledgeable people so I was wondering if anyone had any advice please?

My 75 year old dad was diagnosed with aggressive Prostate Cancer on Tuesday. This was a massive shock to us all as he is very fit and looks in really good shape. He was trying to be sensible and took himself to the GP to have a PSA test. He can't remember when the first one was but thinks 18 months to 2 years ago. His first PSA reading was 7.5 and he was referred to a specialist where they decided to just regularly monitor him. His readings over the next few months were 8.3, 8.3 again, 8.2, 10.3 then two months later 11.5. He was offered a biopsy once it got to 10.3 or to wait and see and he opted to wait and see (which the consultant said he would do in the same situation.) However, once it got to 11.5 he then had a biopsy on 23rd January. He did have one booked in a month before but unfortunately got mixed up with the date and missed it! When getting the last PSA results he also had a DRE and was told that although it felt slightly swollen, this is common for men of this age and all felt benign.

The biopsy has revealed that dad has a Gleason 4+5=9 Prostate Cancer affecting 6/6 cores from the left. It says the DRE was firm, but not overtly malignant. In the letter dad received after, he also said the plan was for him to have an urgent MRI and bone scan and then he'd see dad with the results. He did explain to dad that as the prostate would still be swollen after the biopsy, they usually like to wait a few weeks before doing an MRI scan but in this case would try and speed it up.

After several phone calls chasing the scans up we now have dates for the bone scan of 27th February and the MRI for 11th March. My brother who called was told by a nurse that the first date that they could possibly do the MRI would be 6th March (although the first appointment available was 11th March). Does this sound about right? Also, do you think given the aggressive nature of dad's cancer, his Gleason score and the likelihood that it has spread (I really don't want to think about that but we have to be prepared) they should have started dad on Hormone Therapy right away? It just feels like such a long time to wait as I doubt dad will see the consultant for the results until the end of March.

I called the Consultant's secretary to ask some questions the day after dad's diagnosis (he had insisted in going in on his own and was in shock when he came out so was a little hazy on some details but he's agreed my brother or I can go in with him for future appointments). She gave me the number for a nurse to call if I have any questions so I intend to call her tomorrow morning to ask the questions above but I just wondered if anyone had any ideas?

Thank you very much in advance!

User

Posted 24 Feb 2015 at 20:46

Hi Paul, I just wanted to thank you for your post, I am 50, gleeson 9 diagnosed last November, had my third session of chemo today, the consultant said zoladex has an average 18 month success rate so reading where you are is a great comfort, long may us all keep going. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 24 Feb 2015 at 17:25

Hi Chardonnay,

Lots been said already and most pretty good.

Please let your Dad know that I'm only 58 and two years ago I had a Gleeson of 9 with metastases.

Although the prognosis is always presented as bleak, it needn't be. My first stage treatment has already lasted longer than they told me I had in total - and I'm still fit and fully active!

It sounds like your Dad is of similar approach, so although the initial shock will be like running into a bus, with your support I'm sure he'll get on top of it mentally and continue an active life for a VERY long time!

Your and the rest of your family's support will be key - make sure that someone always goes to the appointment with him - as other people have said they will hear things he misses and hear them differently. My wife and I always (as we did today) have a post meeting coffee to regroup and check over what's been said.

It is scary, but the treaments are getting better and better all the time so try to keep looking ahead and have many more happy years!!

Paul

User

Posted 15 Feb 2015 at 22:44

Hi,

Sorry you find yourself in a situation where you're having to come to this site but I just wanted to welcome you and hope you can find the support you're looking for.

I have had tremendous support since I joined six months ago. There are those far more knowledgeable than me so I will leave it to them you answer your questions.

All I can say is try not to worry too much, you will feel far better when you have the final diagnosis. At least you'll know what your father is facing and treatments available. Some on this site have survived many years even with the worst prognosis.

May I wish your father all the luck in the world with his treatment.

Steve

User

Posted 16 Feb 2015 at 09:42

It makes sense to go with your dad, my wife came with me when I was diagnosed and she picked on things that I didn't. You will find lots of encouragement on this site, there is a toolkit that you can download. Have a look at my profile by clicking on my name, hopefully this will encourage you.

Arthur

User

Posted 16 Feb 2015 at 09:54

I am sorry you find yourself here but would like to say welcome.

It is a great place to get as much help and support as you need.

The diagnosis and subsequent tests to give the staging of this disease is the longest and seems to go in slow motion unless you are able to afford private consultation.

it sounds like your Dad has known for a while that this may be the way things were going but, as you and your brother have determined, it will really help him and you both if you go with him to further appointments. You will think to ask questions that may otherwise escape him and of course two heads really are better than one when it comes to recall.

Your Dad will also find it so much easier if he has you there with him, it can be hard to explain such personal details even in the closest of father/child relationships.

With regard to treatment there are many possibilities so having help to research and understand the options will be a massive help.

If your Dad is happy for you to know and be completely involved he can give a medical consent which means you would be able to discuss things with the medical team as well.

Should he be on HT or some treatment already? possibly but if it is going to be HT it can be very important to take the medication according to a specific timeline so talking to the urology clinical nurse will help you to understand this.

The MRI and bone scan will take a little time to set up even with known cancer the wait time can be two to three weeks.

You should be able to push for an early appointment to discuss the results though as they are generally available within a day or so.

Treatment and the way forward will probably be discussed at an MDT which is normally a weekly review undertaken by the various members of the joint urology and oncology departments.

Be willing and ready to chase up with the hospital, in many cases I regret to say that this becomes the normal. Our NHS is precious but hopelessly under resourced.

If you need any suggestions on steps you might want to take post on here and you should get a response.

One thing to be aware of all new conversations go through the moderators and at weekends this can hold up your post. It will be time stamped when you submit it but appear much further down the list than the most recent posts. I have missed postings before because of this.

It's a beautiful thing you are doing for your Dad.

Xxx

User

Posted 16 Feb 2015 at 11:25

Hi Having just gone through the biopsy and the following scans I too was concerned about the time I had to wait for a MRI scan.

I was told the reason was to stop any blood from the biopsy would give a false reading so the time of march 11th is worth it.

Also I too went on my 0wn to be told I had cancer this was my own decision to protect my wife as I knew in my mind the results, so came as no surprised.as the CT scan and bone scan had all ready been booked or done.

The most difficult was the decision on what type of treatment to have radio therapy or surgery, I came up with surgery because I could have radio therapy afterwards.

Your father if given a choice needs to contact his local support group and chat to people who have gone through the same. On here it helped getting advice but it can be a little one sided.

The result I had surgery last wed in Wycombe hospital spending 4 nights in hospital. The fantastic nurse Fiona supported by HCA looked after me brilliantly , however when she was not on shift the standard of care dropped dramatically , with night care being treated as an inconvenience to nurse, not recording input of liquids required by the doctors . So if going this way suggest you ask the questions of the sister in charge of the ward.

As to the surgery Fiona got me out of bed within 24 hours , walking within 48 hours encouraged me. Discussed how my treatment would go at home , I have had no problems other than a stiff back, have staples out on Friday ,go back week wed to have catheter out and go from there.

So would suggest you can support him by helping him ask the questions and just be there and all will turn out.

Paul

User

Posted 16 Feb 2015 at 14:24

Hello Chardonnay and welcome to this truly supportive site.
I also recommend obtaining "The Toolkit" from the publications page.
When either you or your brother go to the appointments with your father remember to take notebook and pen.
If you have already obtained the Toolkit you may well have a list of questions relevant to his possible treatment and as there is so much info to take in it's best to write it down. Sometimes between the two of you and your list of questions and answers, you can usually dredge up the conversations that took place.
Don't think you will look odd. Most of us do/have done it and It is perfectly acceptable and understandable.

Good luck and best wishes
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 16 Feb 2015 at 18:43

Thanks for your reply Arthur. Just looked at your profile - it looks like you've had quite a journey! It sounds like you're doing really well so that's great and really encouraging.

Thanks for recommending the tool kit. I'll definitely have a look at that!

Best wishes and take care.

Chardonnay

User

Posted 16 Feb 2015 at 23:09

Hi Chardonnay,

Firstly I would like to say welcome, (I know this is a weird thing to say) but it sometimes takes a lot of courage to make that first post to people that you can't see.

We are all here because at some point we have gone through exactly the same process that you are going through know, and it is bewildering and very scary.

The early tests and results seem to take forever and for most is probably the worst part, (what we don't know we can't fight) . Once all of the results are in and you know where you stand I wouldn't say it is easier but it does become your new normal. You have been given some really good advice from some of the others IE note books and having 2 people at appointments (trust me sometimes even with 2 people it can get confusing) you can always come back here for advice.

The Tool Kit is brilliant because it is written in front of you, so staging , treatments and side affects of the different options plus so much more.

One thing that was said to us at the very beginning which if I am honest with our outcome I did not even take on board at that point was to always have hope, that advice has turned out to be probably the best advice that we were given.

So stay strong , have hope and a trusty pencil and paper.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 17 Feb 2015 at 00:41

Hi Chardonnay

Welcome to the forum. There is not much I can add to the good advice that you have already received but one thing I find helpful regarding taking notes is to record the conversation, as the written word does not always portray the true context or meaning that was intended, I always ask politely prior to recording and explain it is for my personal use so I don't miss anything and can refer back to it if needed for clarification and have never had a problem. You can download an app for your phone or tablet for free. One other tip is be proactive and chase appointments etc to make sure things are running smoothly.

All the best

Roy

User

Posted 19 Feb 2015 at 20:53

Hi Chardonnay,

Roy's tip about recording consultations is a great one. My wife came with me when I was diagnosed. I half expected the cancer verdict after all the tests that I'd undergone, but it was still a shock to both of us. Neither of us came away with a clear recollection of what was said and what the options for treatment were, so a recording would have been very useful.

I had a similar Gleason score to you dads, mine was 9, and told that I to had a "tiger" cancer, what they called an aggressive cancer. I've since had MRI scans, bone scans and CT scans allied to external beam radiotherapy and brachytherapy. This process has taken about a year and all indications are good for my recovery. The whole while I've had hormone therapy and will continue to have it for many years to come.

I hope that in some small way my journey will give you and your dad comfort that treatment, once started, will give you the results you want.

Mike

User

Posted 25 Feb 2015 at 07:45

Hi Paul,

Thanks for your reply.

It's really reassuring to hear that you are doing so well and still have such an active life! It is very scary when you are first given the news but coming on here has helped so very much. It's helped me to cope better and be more positive and hopefully that is helping me to support dad better too.

Dad has his bone scan on Friday, so at least things are gradually moving along now. Still 2 weeks to the MRI which seems a lifetime away and the waiting is the worst, with not knowing what we're dealing with! At least dad is keeping himself busy and active. I'm sure that helps a lot.

Thanks again and all the best with your treatment and living life to the full for many years to come!

Chardonnay

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User

Posted 15 Feb 2015 at 22:44

Hi,

Sorry you find yourself in a situation where you're having to come to this site but I just wanted to welcome you and hope you can find the support you're looking for.

I have had tremendous support since I joined six months ago. There are those far more knowledgeable than me so I will leave it to them you answer your questions.

May I wish your father all the luck in the world with his treatment.

Steve

User

Posted 16 Feb 2015 at 08:28

Thanks for your reply Steve!

Also thanks for your encouraging words. At a very worrying time you have certainly given my some hope and that means such a lot right now!

It's good to hear that you've received lots of support from this site. Best of luck to you too in your treatment. Thanks again for taking the time to reply.