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.

Hi OP, can I ask what the biopsy is of? Where?

Op sending the biggest of hugs to you both. If it is positive (god forbid) could you ask what level and what treatment plan is??? Also how long will the treatment be and when can they start??? If it is cancer and they have caught it early enough what is the success rate??? Please keep us updated and again..... the hugest of hugs x

Yes, write down the suggestions like shellyleppard suggests, ask what the next step is, wishing you both the best.

My DF has just been through this. He had a high PSA followed by positive biopsy. At the initial appointment for results he was given a very clear plan and interpretation of all his results together. He then met a nurse specialist who explained everything to him and DM including other tests he would need such as a bone scan. The support and information given was impressive.

I'd ask if it's okay to record the meeting (they will probably be okay with this) then you can play it back when your not so stressed and can digest the information

Hope all goes ok. I’d make sure you have a number to call when you leave (ie nurse specialist) incase you think of further questions afterwards.

Everything @BabbleBee said. Husband had the same experience last month. The biopsy samples are assessed individually for +/- cancer cells and if cancer is present in a sample, it is graded for type of abnormalities to give an overall score from which a treatment plan is divided, if necessary.

We found the initial part of the results appointment nerve wracking. There is a specialist cancer nurse present, and the consultant in their preamble was clearly preparing us to hear the word “cancer”. Husband was very fortunate. His results indicated “watch and wait” with no immediate treatment necessary.

The nurse was brilliant! Very positive and gave useful information on dealing with the day to day living with prostate disease.

Good luck 🤞

It might be worth printing out the pages 51-55 in this booklet https://shop.prostatecanceruk.org/pdf/publication/prostate-cancer-a-guide-if-youve-just-been-diagnosed_ifm.pdf just in case. It has questions to ask and places to write down all the information that you might be given - and to record the next steps.

I'm sorry you find yourself in this situation, it is very stressful and worrying. I've been there myself and my advice would be to take your lead from your DH.
Getting a cancer diagnosis is very overwhelming and everyone reacts differently. Your DH may want to know everything, for some people knowledge is reassuring. But not everyone wants to know everything all at once. For some people it is easier to deal with things one step at a time.

So with your DH I would write down with your husband what he would like to ask (it is very common to forget everything you want to say in the moment so taking in a list will help keep you on track).
You'll be given a treatment plan, so you may have questions about time scales of treatment, side effects etc.
Your Dh may want to ask about his prognosis, but he equally may not want to know at this point. (I very much didn't want to know and found it very upsetting when my then DH kept insisting on asking questions about it)

He maybe given a specialist nurse to contact if he thinks of question later that don't occur to him at the time. Also worth checking out at some point if there i a cancer support centre at your hospital, they can be great at supporting patients and families, offering complementary therapies (relaxation etc.) and being a nice unclinical place for a cup of tea when you are waiting for appointments.

I hope very much that your DH does not have cancer, but if he does then I wish him well in his treatment and recovery.

I've found (sadly through experience) that keeping a note book is handy. I used mine to make notes of what I was being told, and then to note down questions as and when they occurred to me.

Some of the questions were a bit mundane (when am I likely to feel well enough to go out?) Some where more important to me.

it also helped me to give facts to friends and family after medical meetings, and they often promoted questions. How soon could they visit me post procedure, would they need to take any precautions?

good luck to you both. Thinking of you, stranger on the internet. A possible impending cancer diagnosis is stressful time

From a practical level, if your DH needs treatment, ask where your nearest hospital is that would do it. There’s only a certain number around the country with the radiotherapy machines. And then don’t forget help is available. My fil decided to travel there and back every day. My uncle is a nervous driver so this was out of the question. They sorted him accommodation during the week, coming home at weekends. All the best for you and your DH, op.

It says prostate.

Ask about treatment plans and then ask what to expect going forward.

My dads 4 years post prostate cancer chemo finishing and he has hormone injections and 3 monthly psa checks.

Ask about whether surgery has been considered and why they concluded what they did based on answer.

Ask about support services available.

Ask about parking at hospital, time needed off work, who to contact of he has side effects from chemo etc.

Cancer is a big scary world and word. But having a clear honest plan does help you feel in control.

Obviously I've answered based on worst case senario.

Hopefully you won't need my advice!

Asking to record the meeting is a good shout. Also going in with your prepared list of questions. Also, ensure that you don't leave without knowing who he's seeing next, when and where, and a direct telephone number for whoever will be his specialist urology nurse. Be prepared to advocate for him; DH was silent with shock when we received his bad news, and we had agreed beforehand that he was ok with me doing some of the talking if he wasn't up to it. I reflected back what my understanding was of the consultant's words, to make sure that I had understood. They'll be fine with this.
Dh is fine now: surgery was enough.

Thank you ladies 💐I have prepared myself a list and waiting for the doctor to see us now. Was feeling ok this morning but feeling nervous now. At least the wait will soon be over now xxx

I don't have any advice I'm afraid but just wanted to say im thinking of you and your OH and I hope it's good news

Thinking of you. The waiting is absolutely the worst bit. Hope it's good news.

Hey @CoCoaButter85 having been in your shoes a few years ago, I wanted to reply. If you have had bad news you will be a bit shell-shocked but, having waited about six months for DH to get his diagnosis, once we got over the initial 'oh fuck' of it all, it was almost a relief to finally know exactly the level and scale of what he was dealing with and start thinking about treatment options.

My advice advice is get a notebook and write everything down. Write down questions as and when you have them so you can ask them at the next appointment. They can pop up at the most random of times. Don't be afraid to ask any questions (and I mean ANY questions), they will have heard them all before.

Feel free to PM me if you want - it's now 3 years since DH was diagnosed and treated and all is well.

Sending positive thoughts x

You OK?

Thank you for all your support. Unfortunately it is cancer. As @Piffpaffpoff mentioned the initial shock hit a bit like a wall of bricks. I think DH came to terms with it already so he was less shocked. In a way I did as well but hearing it from consultant was difficult. But on another hand it is a relief. We know what we are dealing with now. Unfortunately we will have to wait for 4-6 weeks for appointment to possible treatment options etc.

We have private insurance through work but DH says that specialists will be the same. Which I agree on but at least wait times might be shorter and nicer facilities. In his mind he sees no point going privately. Has anyone have experience private vs NHS?

@Piffpaffpoff

@Piffpaffpoff thank you for sharing your experience. It does make me feel better hearing it

Ask what the mitotic rate is. That’s the rate at which the cancer cells are growing. Ask what stage the cancer is.

I’m sorry to hear your DH diagnosis. If he has private healthcare I wouldn’t even consider using the NHS for this. He’s right that the treatment will be the same but if you have work cover then it’s a total no brainer. The main advantage is speed and in the admin.

you certainly won’t be waiting 4-6 weeks for a next appointment, any scans results will come back to you often in a day or 2, you’ll have less waiting around for appointments, staffing is unlikely to be an issue and appointment times can usually be scheduled to suit you rather than the other way round. You’ll also be able to have one point of contact, the consultants secretary and always have appointments with the same specialist not one of the team.