Supporting a person with prostate cancer

[NorthernDancer]

DH has been diagnosed with metastatic prostate cancer pretty much out of the blue. It is not curable, but should hopefully be manageable in the short to medium term at least. It is been an absolute roller coaster since a GP asked for a PSA test without telling him back in April.

He's currently on androgen deprivation therapy, injections and tablets, and is struggling with the side effects. He is not a candidate for chemo.

Our lives have changed completely in the last six months and it has been really hard to adapt. Given that prostate cancer seems to be so common now, I'm sure I can't be the only woman on here who is having this experience. Perhaps we could all support each other through the medium of this thread?

Thank you, it all depends on the BRCA mutation. DH doesn't have children. The general test came back that it was unique to him and not hereditary. A small comfort that his sister doesn't need to worry about this in particular. I'm sorry about your father. My DP's cancer has spread to his bones and is taking chemo tablets. It really confuses me the difference between treatments.

Your Dad would need gene testing to understand if it affects wider family members x

Hi, im sorry to hear you - and everyone else on this thread - are going through this. Im responding as my husband had a radical prostatectomy a few weeks ago and you asked about this. I found the prostate cancer forum really helpful - some lovely people on there with lots of helpful information. My husband is early fifties so relatively young and that was a factor in deciding treatment options and his electing for the radical prostatectomy. The operation seemed very daunting before it happened, but thankfully it went smoothly and he’s recovering amazingly well. Still a long road ahead, but the operation part of it has not felt as big a deal as we anticipated it would - I think the catheter was the thing he found the most annoying and he handled that pretty well. A guy on the prostate cancer forum who had been through it, gave us some tips, including: get a bucket to put the night bag in next to the bed and get trousers with zips up the side - i did not know these were a thing but Amazon sell them - they just look like (not very lovely) joggers, but they are useful when you have the catheter. Good luck. And, sending strength to all going through this

An update on my DF too. His PSA levels are now over 3,000 and the scan showed it has spread to his lung (already multiple sites on his bones). He will be starting a second line chemo after his upcoming holiday. He did manage to get travel insurance but it was £4K which is eye watering but he’s in need of a break.

@BlackCarrot thank you. A tricky one to bring up but also have a sort of a feeling that he might have had it done in which case we would know if we needed to. Must be so hard treading the line being a parent and protective of even adult children and just being human and scared.

Regarding travel insurance - we are going to look into it - he has been diagnosed with prostate cancer - its just that treatment hasnt started yet - so we will see. If its in the thousands for a week in malta i dont think that is doable.

i will update in due course.

And here we go again : six weeks after finishing antibiotics and going for the required PSA test, DH has not heard anything back. He chased the urology people to be told they have contacted appointments for an appointment for him to 'discuss results'.

This is despite a consultant (he thinks) saying he personally would look at the blood tests and report back straight away.

I go for a blood test for anaemia and sometimes get results back the next day!

i need your wisdom please. Despite consultant saying he was ok with the cell developments of the last prostate biopsy, DH now has a call to go in on Monday for a discussion of an op or radiotherapy. I feel utterly out of my depth.
Any views or guidance warmly welcomed x

Hey, sorry you’re going through this. I think the op is a good option, I know there can be side effects from removal but at least the bloody thing is gone. It’s positive IMO that the op is an option, presumably they believe it is still curable?

Hopefully the consultant will be properly briefed to give their recommendations on treatment x

Hi, I'm sorry that you and your DH are going through this. The good thing is that your husband has options. The less good thing is that this means he has to make a decision, which is not easy. As mentioned in my previous post, I found the Prostate Cancer website forum really helpful, especially when gathering info about the options to support my husband around deciding on the treatment to have. The impression I got was that age can be a significant factor when deciding between the op or radiotherapy with the op potentially preferable to radiotherapy when you're younger. My husband at 54 chose the op. Feel free to PM me if you have any questions. Wishing you and your husband all the best. x

I found the Macmillan forums very helpful. I think the one below is the right one I just had a quick look now, but you can search the forums.

https://community.macmillan.org.uk/search?q=prostate%20cancer#smpq=prostate%20cancer&serpq=prostate%20cancer&serp=1&serptag='prostate%20cancer'

My DH has prostate cancer, he had radiation treatment quite a few years ago that held it for several years then it recurred and had spread outside the prostate, so is now incurable, but it has been controlled ever since by hormone treatment, more than ten years now. The forum was fantastic for me in the early days hearing everyone else's stories and treatments.

Good luck.

Im getting frustrated about how long all this is taking. Having been told in december DH has cancer, seeing the oncologist in january - hes had biopsy, CT scan, MRI scan, bone scan and PET CT scan.

his gleason scores are 3+4=7 and 3+3=6

A month ago addenbrookes told us he is too high risk for surgery so we are still waiting to discuss hormone/radiotherapy with the oncologist whose just been on holiday for 3 weeks!

so 4 months after receiving the news he has cancer nothing has happened yet.
AIBU to be frustrated? And each time DH gets a call from the cancer nurse hes so agreeable!!!! I think he needs to be more pro-active and ask for something to happen?

What’s his psa level? Do you know his TNM Tumor grading? (T2/T3 etc). The Gleason score is not worryingly high. Why is he high risk for surgery, does he have other health issues? Prostate cancer is slow growing and the average timeline from referral on the 2 week pathway to actual treatment should be achieved with around two months, but it can depend on various factors. My husband was referred in February with a psa level of 25, and his mri has advised a provisional grading of T3b N0 Mx, he had a biopsy on the 26th of March and has his follow up for results and planning on Monday 20th April. So just over two months. You do need to advocate for yourself, or your partner, but if his psa is low and his T level is only 2 it’s unlikely to be particularly aggressive.

@charliehungerford

thanks for responding. His PSA was 7.56 in december
gleason 3+4=7 one side
glesson 3+3=6 other side
T3
hes high risk for surgery due to having epilepsy and the fact that during the op he would be positioned head down which causes some swelling to the brain so they are concerned this might cause seizures during or after the op.

he also had surgery on his oesophagus/stomach about 20 years ago which was done keyhole with instruments entering through the abdomen which will have left scar tissue in the area they need to access the prostate so could start the op and have to stop.

we saw addenbrooks a month ago and been waiting since then to see the oncologist to get hormone/radiotherapy started.

its just all taking a long time to start treatment and DH is not a good communicator with me or them.

hes just told me he has left a message to the effect that he definately wants to start hormone/radiotherapy asap - i thought he had done that 3 weeks ago!

@BilbodogThats not too high a PSA level, but T3 diagnosed from the MRI would be of concern. My husband is T3b which means the cancer has escaped the prostate is in the seminal vesicles, if he’s not suitable for surgery ( and T3 often isn’t irrespective of health concerns as once it’s no longer contained surgery can sometimes lead to further spread), then you are correct regarding ADT (hormone therapy) followed by radio therapy being the most likely treatment plan. Does he have a named consultant in the urology department? If so contacting their secretary might speed things up.Might be worth checking out the NICE guidelines for prostate cancer treatment, which you can probably find on the MacMillan or Prostate Cancer uk website. I’m pretty sure the guidelines are to start treatment within 61 days, so worth quoting to the cancer nurse. Take a look at the MacMillan or Prostate Cancer uk sites and they are excellent and give great information from people who have been through the system and know how it should work. It’s a horrible worrying time that we all struggle with, but getting a treatment plan in place gives more focus. He needs to be persistent and keep phoning. Remember it is a slow moving cancer, so please try not to panic.

@charliehungerford

Thanks for that. Ive just done a timeline from the first hospital appt which was 11/11 when the growth was discovered and after biopsy on 26/11 we had confirmation of cancer on 23/12.

then:

16/1 MRI
21/1 oncologist appt - she recommended surgery due to DH already having
Bone problems caused by 50 yrs of epilepsy medication
6/2 Nuclear bone scan showed no spread
19/2 PET/CT scan showing no spread
26/3 addenbrookes to discuss surgery where surgeon made it clear they did
Not want to do it

so we had 2 months between oncologist appt and seeing addenbrookes who just explained why they thought he was high risk (could have been a phone call?)

and now we are almost a month on from addenbrookes appt and still waiting

just seems a lot of waiting with nothing happening.

So from the diagnosis on 23/12 it has now been 115 days.

@bilbodog
that’s quite a while. I’d be putting pressure on to your contacts at the hospital, all the scans and biopsies seem to have a good timeline, but there has obviously been a major blip regarding possible surgery and alternative treatments. Make pests of yourselves and call regularly. The only other suggestion might be to speak to your GP, if you have a named doctor and you have a good relationship with them they might be able to chase up for you. I hope it gets sorted asap.

@charliehungerford

update - just been given an appt for monday with a different oncologist so lets hope we can get things moving!

Yes, good luck. Our appointment is also on Monday, let’s hope we both see some progress.

@charliehungerford

Hope all goes well for you on monday

DH had his SABR treatment as three sessions over the last week in March. He was on high steroid does for the week and found the treatment ok. It was not painful, but he was very tired later on as the steroid wore off.

We assumed the pain would start to decrease after the treatment but it didn't, which scared him. The steroid course was only for the week of the treatment so he found the pain hard to manage with just painkillers. He can feel himself becoming addicted to the codeine which he wants to avoid, but he also needs it to function sometimes. As Trainspotting memorably informed our generation. constipation is a side effect of opiates so he's trying to make sure he has a break every day if only to keep his bowels moving.

He had a blood test followed by a consultation with the doctor halfway through the week after (remote consultation as we were away) and his PSA had fallen. The doctor said he can take weeks for the SABR treatment to show the full effect so any PSA fall this early is a good sign, and it's normal for the pain to take weeks to improve. The doc has put him back on steroids for now which have really helped the pain; it's back to coming and going rather than there all the time. DH, who likes to prepare himself by finding out the worst (I am not sure this is a good thing) keeps telling me to be aware that permanent chronic pain is a possible outcome as well.

Another PSA test next week, hoping it will show further falls.

Update from me - we met with the oncologist today and DH is starting hormone therapy ASAP with radiotherapy commencing in about 3 months time.

hoping we can get a visit in to malta to see our new grandson before the radiotherapy starts - yay!

Our meeting resulted in a similar diagnosis. T3b but no indication of spread to lymph node or bones. ADT in tablet form for the next few weeks then three monthly Prostap injections. RT later in the year. Onwards and upwards!

To update on my DH.

Obediently took six weeks ABs. Had a PSA tests. Had to chase up the result. Had his appointment today. PSA still high (obviously, we could have told them that) and so it's another MRI. This will be the fourth, I believe. This will almost certainly be followed by yet another biopsy.

And so around we go again...