DH's biopsy results tomorrow - what to ask?

[CoCoaButter85]

We have DH's prostate biopsy results tomorrow, meeting doctor in person at the hospital. We don't know for sure that it is cancer but I want to be prepared for the worst. I have never been in a situation like this before - what questions do I need to ask?

I don't know how he will handle the news so want I think I need to be prepared for it.

Did they say whether it is aggressive? Anything about spread or size? If I had the option to go private I'd be tempted to go that route - much quicker timescales. Only thing I'd be concerned about is whether they foist extra or unnecessary treatments on you since they are a business. If you've a good consultant and ask the right questions that would negate some of that concern.

I would definitely go private rather than wait.

Sorry for your news

When I was diagnosed with ovarian cancer, my GP advised me to stick with the NHS. She said that cancer services in the NHS are much better than in the private sector.

Sorry you have bad news OP. Personally I find private health care great for getting a diagnosis or one off treatment (eg seeing a consultant, getting a scan, or having an op). I don't rate it as much for ongoing treatment plans as I've found there's a much bigger onus on me to chase/organise etc. I would personally stick with the NHS for cancer.

I’ve found totally the opposite. I found that if all runs like clockwork. Appointments made immediately, easy to change them. I wouldn’t touch NHS cancer services if I had the option not to. Granted you might need to consider what hospital to be treated in and if you’re not in a major city then perhaps if you don’t have a cancer centre privately nearby but if you’re close to London Manchester Glasgow etc then you have a choice of places and I’d go with them without hesitation.

The other thing is that on the NHS you get assigned an oncologist. Personally o like to choose Who is looking after me, I like to choose them based on their experience and expertise and to know I will see the same person for each and every appointment and ensure continuity of care not seeing a different person each time.

My husband went through the same three months ago. I am extremely angry at the way he was given his biopsy results. It was a nurse (male) not a doctor and he talked very fast. That wasn't the issue though, it was the fact that we had not yet been told at any stage that he had cancer (although we thought it was likely).
The nurse sat us down and immediately launched into an explanation of his biopsy results, starting with 'this type of cancer' - remember we hadn't been told he HAD cancer at that time. I had to stop him - not easy because he was talking so fast - and ask him whether he was telling us that DH actually had cancer. He basically said yes and then immediately launched into the rest of his explanation of the type of cancer, the stage, growth rate etc. Once he had got to the end of that we were able to answer questions. At the end of the appointment I told him I was going to give him some feedback and let him know how distressing it was not to have the information about his biopsy results been given more sympathetically. My DH should have been told, gently, before any of the details, that unfortunately the results of the biopsy were that he had cancer, as I was when I was diagnosed with breast cancer last year.

As it is, he is lucky in that he has a very non-aggressive and slow growing cancer. He is 70 and has other health conditions, so they are adopting a watch and wait policy. He has been told it is very unlikely to make him unwell in the relatively short term (ten years) and it is probably something he will die with, not something he will die of.

I wish you and your husband all the best, and hope that he receives good and rapid treatment.

Hi OP. I have private healthcare and I'm going through a load of gynae treatment at the moment with a fantastic consultant. I get told my ultrasound results as I am in the chair having the scan.

Appointments are super easy to make at a time convenient for me.

On the other hand I watched my dad try to deal with bladder and prostate cancer via the NHS and it was fucking appalling. Weeks between appointments, no proper information, no support. It was horrendous.

Yesterday he had surgery on something else. It took 6 hours to bring his bag and phone to the ward after surgery.

By contrast when I had my recent surgery, I checked into my room, was able to leave my phone and kindle on the bedside table and all my stuff on the chair and came straight back to the same room afterwards.

I'm also waiting for a biopsy result this week and was able to choose the time of the appointment and it's also only taken 10 days for the biopsy.

Go private. Every single time.

BTW I am so sorry for your news.

@DilemmaDelilah thats exactly the scenario that happened with my dad.

He was devastated as he'd gone on the bus, had no one with him and had to get the bus home.

Hey @CoCoaButter85 so sorry to hear it was bad news but now you know what you are dealing with.

DH went private via work, mainly because he’d had all the investigations through the private route so he just carried on with that as he had built up a relationship with the consultant. I presume he got seen faster than on NHS but I can’t say that for sure. Perhaps worth having a look into how quicker he could get seen/get treatment started, just to see if there is a major difference?

It's not just about faster though. It's about convenience to fit around your work and life.
It's about comfort when you get there.
It's about the admin being 100 times easier to deal with.
It's about being able to change consultant if you don't find you gel with them.

It's about being treated like a person instead of being on a conveyer belt. It's about knowing that the particular consultant will be the only person you need to deal with each time.

No registrars, no medical students, no cancelled clinics.

I'm so sorry that it wasn't the news you were hoping for: be kind to yourselves, and just go with the flow at the moment. We ate a lot of crisps! Just couldn't face food for a while.
My dh, like you, initially went along with the traditional notion that the NHS would be better for cancer, but when we mentioned to the consultant that we had cover, he was moved over straight away. Whereas the NHS had taken two weeks to review a CT scan, and then a further five weeks to arrange and review a supposedly urgent follow-up MRI, once he had switched, the scans were on the consultant's screen and discussed with him 20 minutes later. It is an utter disgrace, but we have had to park our guilt and sense of outrage and do what was best for DH's future. In our area a lot of NHS cancer care moved to private hospitals during the pandemic, and a lot of it hasn't moved back. There seems to be a lot of flow between the two. If you're in South Hants, please DM me and I can chat more about the excellent and timely care DH received at the Spire.

My DH had a not very high PSA but other symptoms they did a biopsy that was negative, but the consultant wasn't satisfied so they did another one which came back positive. This was quite a few years ago now, he had radiation treatment and was clear for a few years, then it came back. He's on long term treatment to stop the spread now that seems to be working. If it's positive there will be a 'score' of how advanced and how dangerous it is and they will discuss whether they will just watch it, or give you options of surgery or radiation treatment (there may be other options now, I've read about a few, but don't know enough to discuss). If positive it's a long process and treatments are really good and cures and long term survival the usual outcomes these days.

I recommend the Macmillan forum, there is a whole section on prostate cancer and contributions from people at all stages of diagnosis and treatment.
https://community.macmillan.org.uk/cancer_types/prostate-cancer-forum

I will say that I don't have the option of going private, but the care I have received through the NHS has been excellent.

@DilemmaDelilah
That was definitely poorly managed.
My DH got diagnosed 3 days into the first lockdown and the process was appalling. He got an infection from the biopsy and ended up in hospital twice on IV antibiotics with sepsis. He got discharged earlier than they normally would due to covid risks (April 2020).
He had chemo summer/autumn 2020 and radiotherapy the following winter. He's ok at the moment waiting for the last hormone therapy drug to wear off. It's been a long haul.

Thank you all for all the messages and information. We had some time to process it now and came to terms with it (or as much as possible at least).

He is still determined he wants it on NHS (Guys in London). I suppose he can switch whenever he wants to. At least we're lucky to have an option.

He is 48 and I'm 37. We're going through IVF (not successfully so far) so there's also an added concern of fertility for us. Will look into sperm freezing and potentially giving up on the idea altogether.

I was going through the booklet yesterday and looking at the treatments. He is otherwise fit and healthy, good diet and exercise. Seems that radiotherapy combined with hormone therapy is the most likely solution. Would that be something he needs to live for the rest of his life.. I don't know. Will have to wait for his consultation.