Advice please

Yes you need to speak to someone at the hospital even if only because you felt rushed. 

I was placed on Bicalutamide when first diagnosed. That particular hormone therapy had very little in the way of side effects for me. It holds the cancer at bay to give you a chance to get everything else together. 

You need to speak to the hospital and get some serious information. 

Side effects are very much a person-to-person thing. On my personal basis, nothing about my side effects would have prevented me looking after my wife. Other things yes. 

However, if your cancer has begun to spread you need to at least hold it in place. Bicalutamide was designed to do that. 

Get hold of someone at the hospital who will listen, and make sure they understand all your problems, especially your caring responsibilities. If no one is offering support, the PALS service should assist, or even your local Health watch.

Some GP surgeries offer a cancer support service. They will help. If you have a pharmacist you use regularly they can help with advice on the side effects. 

Looking at your problem, though, I would start with treatment immediately. Your wife may need your help more than you need hers, but she is still going to need you. 

If not performed already, you need a PSMA-PET-CT scan or a whole-body bone scan and CT-chest, abdomen, and pelvis. Most probably, this has been addressed at the MDT.
Next, you must see an oncologist ASAP. Hormonal treatment alone is just a beginning. All prostate cancer systemic treatments would cause tiredness and compromised levels of energy. This may not compromise your ability to take care of yourself and your loved ones.
Abstaining from, and indeed starting treatment without a thorough informed discussion with an oncologist, doesn't sound right at all.

What period of time is your prescription for ? The most common use of Bicalutamide is just for 28 days (ish) to prevent a "flare" in your PSA levels when you start on one of the more commonly used HT drugs, such as Prostap. 

He did mention that my GP would contact me for an injection which would take over from the tablets but didn’t say what it would be or for how long. I assume life long?

I had a full CT scan before the operation and then a chest scan following, as the dots were a potential problem. I’m due a scan of my liver next. After the original scan I was told there was no spread. I understand what you’re saying but I’m just concerned about potential side effects really 

Hello Beard 

I am so sorry to read your post - I think you need to:

* Start the Bicalutamide as prescribed - this is medical advice from your team. As moonrakerz said this is used at the start of a course of Hormone Therapy to stop "testosterone flare". It is sometimes used alone as Hormone Therapy.

* You need to contact the hospital - you need an urgent oncology appointment to sort out any further tests you need and a treatment plan. The MDT meeting should have sorted this out.

* i agree a call to the hospital PALS service may speed things along - you need to tell them of your wife's treatment too as this will be increasing your anxiety levels.

* If you have either a Macmillan centre or Maggie's (click the link) at your hospital they will be able to help you.

As an aside I am just half way through a course of Bicalutamide and have a hormone injection booked for this morning - I have had 3 years hormone therapy and the main side effect was tiredness. I got through this by walking the dog every time I felt tired. Sadly we lost our dog aged 17 last year - last week we adopted a 6 year old ex racing greyhound and my intention is to exercise with him and hope this cures the fatigue!!

Stick with us - ask any questions - but listen to your team and be proactive in pushing to get the care and treatment you need. Don't be afraid of asking for help. Our Support Line on 0808 808 00 00 (8am to 8pm is there for you and your wife.

Best wishes - Brian.

Does sound as though you will be on Bicalutamide for a short time. Looking back - I started in Bicalutamide on Jun 19 (for 28 days only) and started Prostap on Jul 3rd. The hospital you are dealing with will "sub contract" your routine HT injections to your GP.

The side effects are really "how long is a piece of string".............some people are badly affected, others very little. I have been very lucky, 15 months of Prostap and 20 doses of RT...............not much in the way of side effects.

Hi Steve. 

thanks for the reply, good idea the doctors surgery does have a cancer support service. I will give them a call. I will try the hospital too. Just not sure what the best thing is to do as I’m concerned about not being able to look after my wife.  I will think about starting it. 

thanks. Tom

Hello Beard

You have a lot going on at the moment and your anxiety levels must be through the roof. i am sorry to read that cancer is impacting so much on both you and your wife right now. I am going to try to put myself in yours and your wife’s shoes and those of the surgeon to see if I can make some sense of it, if I may?

First, you! It’s incredibly disappointing to learn that the cancer has spread. Those of us who go into treatment with ‘the intention to cure’ know absolutely that this is an intention and not a guarantee.The thought and fear of recurrence is there with us every day.  But, behind this real fear, we do know that the cancer can be managed successfully for a long time. Also, people react differently to the hormone therapy - some get away quite lightly and others don’t. That said, the most important thing about hormone therapy is that life does go on and you can still enjoy it. I have no experience of the newer drug regimes such as triplet therapy but there are some very positive accounts on here - good results and good things happening - holidays, grandchildren arriving, family get- together etc. Without giving the treatment a chance, you are potentially denying yourself so much more life. You will also be denying your wife your presence in reasonable health by her side.

from your wife’s point of view, she is taking the ‘big stick’ of chemo for her breast cancer. She knows that there are nasty side effects but she knows, too, that this is the best option for her to beat the cancer and be there for you, the family, your future lives together. I know how frightened and angry I felt when my husband, at one point, said he was not going to have any treatment for his prostate cancer. Your wife is in a much more vulnerable position than I was bat the time but, even so, it was , for me, one of the worst and lowest points in the prostate cancer journey. I recall saying something like, ‘we’ve got through all sorts of bad times in our lives together . The fact that we fought those bad events together gives us strength to get through this.’. I am sure your wife would want you to to give the drugs a try so you can have more years together

The surgeon is in a difficult place. He has operated on you in the expectation he could remove the cancer completely. Unfortunately this did not go to plan. Breaking bad news to patients is never easy and some doctors are brilliant in the way they handle it. Some are very bad! As a registered nurse, I’ve witnessed both ends of the spectrum. I’ve also been questioned by patients who have experienced both! Bad news hits home hard and sometimes patients are so shocked they can’t seem to think clearly enough to ask the right questions or to take in what is being said. Then, too, the urologist is a surgeon first and foremost and not an expert in oncology. He/she has done the right thing by referring you to oncology and by prescribing bicalutamide.

Then - the bicalutamide! I’m not sure how it works or how quickly it works. But I always remember the prostate cancer nurse saying that the day he started the bicalutamide was the day the cancer would be stopped in its tracks! I couldn’t get that first tablet into my husband quick enough!!!

Brian ( Millibob) has often suggested to people that they contact the MacMillan professionals on this platform. Perhaps he will be along to be able to give them the contact details?

I hope this rigmarole has given you a bit of perspective in a world that is spinning out of control for you. I also should note that nobody can force you into treatment that you don’t want - you have the final and ultimate control.

best of luck and my thoughts are with you and your wife. 

Hi Beard , you have been dealt a particularly bad hand at present and I can’t imagine how you are coping with all this going on.  I think your priority needs to be yourself so that you are in a good position to help your wife through her own challenge.  
Firstly, don’t delay the Bicalutamide, it is unlikely to give you any major side effects.  Secondly, contact your GP to see if the main HT has been prescribed (you will be put on Prostrap or Zoladex or similar) on monthly or 3 monthly injections.  Once established on this your Bicalutamide is likely to be stopped.  
Do you have contact with a Cancer nurse specialist (or has your wife been allocated one), I have found they are so knowledgeable and well connected that their advice is invaluable.  Perhaps they can get you back to see an oncologist (although the plan should have come from the MDT already).

Broadly speaking, if you can get established on HT, there isn’t a panic to do much more, as this should put all the PCa (even in your lungs and liver) into hibernation for months or even years, while a plan of attack is found.

If (and it is unlikely) that HT causes fatigue that you just can’t deal with, then another plan needs to be found.  We all react differently to HT, but most of us can cope.  Please come back if you have any questions and let us know how you get on.