What questions do I need to ask when ... - Prostate Cancer N...

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What questions do I need to ask when I get my Biopsy Results?

Chuck67
Chuck67

I am getting my Biopsy Results on Monday - see my profile for more information. I have searched everywhere and cannot seem to find what questions I should be asking if I get bad news. My PSA is 4.1, after that followed an MRI (not sure if it was an mpMRI) and then a template biopsy. I am 50 years old and feel a little anxious and my mind is racing ahead meaning I cannot think clearly on what questions I should be asking. The internet says make sure you write things down and ask questions because you won't remember them afterwards....well what questions do I ask? Any hints would be greatly appreciated.

19 Replies

Does it show cancer? Is it slow growing? What are the options for treatment if there is cancer? What are the side effects of surgery? Impotence? Incontinence? Recovery time?

Chuck67
Chuck67 in reply to BobJensen

Thanks Bob, I have seen your name on the replies to hundreds of questions asked on this forum so thank you for answering those and especially for answering this one! I will post how I get on.

BobJensen
BobJensen in reply to Chuck67

You are welcome. Yes, please keep us posted.

direwolf1
direwolf1 in reply to Chuck67

My out of pocket expenses were about 400.00 my PSAwas 9.9. I was diagnosed with cancer.

AlanMeyer
AlanMeyerModerator

Well Chuck, your very first question - what should I ask, was a great one. I think you're thinking about this the right way by trying to inform yourself as well as you can.

I haven't got a complete set of questions for you but I can make a few suggestions. One thing I think you should ask for is a copy of the complete biopsy report. The report will probably contain a lot of technical information that you won't understand and you won't possibly be able to remember. However you will be able to learn about and understand a lot of it after you've done some reading and you'll want the report so that you get that information.

Ask the doctor for his explanation of each of the parts of the report. Some important ones are:

Number of positive cores and their percentage of cancer. A "core" is one sample or needle's worth of tissue taken from the prostate.

Gleason score. That's a measure of the extent of abnormality (technically, the de-differentiation of the cell) found in tumor cells. The higher the numbers, the more aggressive is the cancer.

Of course you want to know your doctor's recommendations, but I would not rush into any treatment he offers. Ask him how many prostatectomies he does in a year or a month. There are lots of urologists but most do not specialize in prostate surgery and, although they can do them, they are generally not as proficient as the people who specialize in it and do between 50 and 200 prostatectomies every year. And besides that, although surgery is a good option, it's not the only option and others should be considered. The best chance of a cure is in the initial "primary" treatment. It should be the very best, most appropriate treatment you can get from the very best, most proficient doctor you can find.

I could babble at length about all of this but I've probably said enough. Others will probably chime in.

Best of luck.

Alan

AlanMeyer
AlanMeyerModerator in reply to AlanMeyer

I did a Google search for ( prostate biopsy interpretation ) and got a lot of useful looking hits ranging from super simple to highly technical.

Chuck67
Chuck67 in reply to AlanMeyer

Thanks for that, I really appreciate the time and trouble you have put in to answer what is a really basic question. Thanks again.

Here are some questions:

pcnrv.blogspot.com/2017/12/...

Chuck67
Chuck67 in reply to Tall_Allen

Superb!!! I think the Consultant will be a little taken aback when I spout those questions out!! Thanks a lot.

MBOY1
MBOY1 in reply to Chuck67

If your doctor doesn’t want to answer your questions then it’s a good possibility that they are the wrong doctor for you. Depending on what all of your pathology says you may or may not be in a hurry to begin treatment. That’s why it’s so important to know answers early on in process. In my own case I was diagnosed 3+4=7 in early March. It allowed me to have additional testing, meet other specialists and talk to a lot of men. I will begin proton beam therapy in about 3 weeks which is 9 months post diagnosis. Good luck in this journey.

>>>

. . . .One thing I think you should ask for is a copy of the complete biopsy report. The report will probably contain a lot of technical information that you won't understand and you won't possibly be able to remember. However you will be able to learn about and understand a lot of it after you've done some reading and you'll want the report so that you get that information.

<<<

YES, YES, YES !!!

i would go so far as to say:

. . . If your doc doesn't want to give you the report,

. . . . . get another doc.

. Charles

Chuck67
Chuck67 in reply to cpcohen

I will...for definite!! Thanks for the response.

Hidden
Hidden

Just to second all the suggestions given here.

Does it show cancer might be your first question. A PSA of 4.1 and "there's something we need to look at" doesn't inconclusively prove anything.

If the answer's no then you will be so relieved you won't take in anything after that.

If the answer's yes you will be so stunned you won't take in anything after that.

Either way, make sure you get the report.

I don't want to raise your hopes unrealistically but there are other causes of raised PSA and things to look into than cancer.

I had my MRI AFTER my biopsy, and I wasn't given any details of the MRI result other than the cancer was localised. However, the histology report after surgery stated that the tumour was in the top part of the left side of the gland BUT, the top part of the right side was calcified.

I don't know if this showed up on the MRI but imagine it would since it would be denser. If so it would have been something to look at.

The area of calcification was no surprise as for years previously I had chronic prostatitis. Prostatitis raises PSA and on Digital Rectal Exam (DRE) my Dr described my prostate as feeling "irregular".

Did you have a DRE? Have you ever been diagnosed with prostatitis or had possibly mild urinary tract symptoms?

In any event the biopsy will eradicate the doubt one way or the other and I hope the news is good. If it isn't then at least you won't be left in a state of uncertainty.

Good luck

Chuck67
Chuck67 in reply to Hidden

Hi Tim, Thanks for the response. I know you are in the UK (me too) and dip in and out of the NHS system. So far I am not sure I have gained anything by doing this apart from the slightly nicer surroundings when I am in a private hospital. Speedwise, I think about the same.

I do realise that a raised PSA does not necessarily mean cancer but as I have no symptoms of PC, prostatitis, urinary tract symptoms or anything else for that matter the raised PSA is, at the moment, a mystery. I did not have a DRE either by the GP or the Consultant, infact the consultant said that he could do one but he would only be feeling the back (or maybe the front) of the prostate and a DRE is not conclusive either way.

You are right, the results will, I hope, prove one way or another what the problem is.

Hidden
Hidden in reply to Chuck67

Chuck the NHS is very good when it comes to cancer and I think it's pretty dependable.

I find this site is good on the whole, but unfortunately most guys, despite their admirable intentions, presume that we are all American and their (no doubt sound) advice is based on their health care system.

I can tell you what's likely to happen if you stick with the NHS. It does vary slightly from trust to trust and in different regions.

If your biopsy is positive, they tend to throw all sorts of information at you in written form. You can take it home and digest it. There will be booklets, contact details for any local prostate cancer support groups or cancer charities. The booklets should contain concise information about the cancer, its diagnoss and treatment. You should be given the name and contact details of a "Key worker" or "Clinical Nurse Specialist" (CNS). This is someone you can contact at any time if you have questions or concerns about the "clinical" aspects of your diagnosis and treatment.

They will NOT offer you a copy of the actual report, you may have to ask for it quite assertively. It is YOUR report and you DO have a right to it. Immediately they may only let you see it and they won't have a copy available for you to take and/or it will be electronic. There may be some process you have to go through to get a copy, but they may bypass that.

The important things to know about your biopsy result is the Gleason score and the number of cores affected. The Gleason score indicates how "aggressive" the cancer is and the number of cores how extensive it is within the gland itself.

I adopted an attitude of "sceptical trust" towards all those who were involved with me at various stages. This means unless I could see any concrete evidence that they had got something wrong, I trusted what they said.

You can ask for a second opinion, I never did and unless your reports say something which appears wildy unrealistic, I see no reason to. You have to have some trust and this is a good starting point otherwise you'll be constantly looking over your shoulder at all they do. The NHS does get it wrong sometimes but on the whole is very reliable.

If you do ask for a second opinion it may simply delay things.

Urologists tend to work as a team. It may be that it is the CNS you see mainly, registrars or consultants. You can ask for another CNS or doctor, but it may be someone in the same team and if another team, may be in another hospital. A further delay.

Trust - but check on what they say. The information/explanations may be incomplete or, as I found on at least one occasion - inaccurate. I told them.

Possibilities

If your biopsy is positive they may ask for further tests so that they can do TNM staging. An MRI can confirm whether the extent of the Tumour (T) and if it has spread through the gland capsule. It may also determine if it has spread to local Lymph Nodes (N). They may ask fior a radio-isotope bone scan to see if it has spread outisde the pelvic cavity, i.e. Metastasised (M).

The best result for a positive biopsy is T1 N0 M0

see

prostatecanceruk.org/prosta...

When all results are collected, current practice is that they go to a regional Multidisciplinary team and they will make recommendations for treatment options.

Another appointment at which they will tell you the recommendations, but will not ask you to decide there and then. The treatments they recommend will be only treatments available of the NHS. They will not offer you anything excessive and nothing that would be inappropriate.

There seems to be a bit of a postcode lottery as treatments available in some areas of the UK aren't available in others and vice versa, but you CAN ask about other treatments that aren't available in your area as theoretically you have a choice where to go.

Trust - you can again ask for a second opinion, change of doctor etc, but I think this will just waste time.

If you want anything else, you'll have to go private. Even then it may not widen your choices. Private health companies in the UK do not deliver services that don't generate a good profit or make a loss, so the treatment you get may be no better.

It's at the point of making the decision that you need as much information about the pros and cons of each.

You can get this information from

Your CNS

Prostate Cancer UK

prostatecanceruk.org/

They have a helpline, you can call them.

Cancer Research UK

cancerresearchuk.org/

Macmillan Cancer Support

macmillan.org.uk/

Again you can call them, but also there is loads of information available online about all cancers

Depending on where you live Macmillan may have a Cancer Information and Support Centre near you, usually in a local hospital or other public building.

visit

macmillan.org.uk/in-your-ar...

to find out

You can drop in to a centre (or make an appointment). Their staff will help you identify what information or support you need, give you the information, or signpost you to other local services or organisations that can help.

OR you can just talk to them and they'll listen. Ask questions and they'll answer or signpost you to someone who can answer or simply find out for you.

Macmillan is available for you now, will remain so during any treatment you have and will remain so after treatment as long as you need.

Phew, sorry a bit long winded.

I hope this helps

My PSA was 0.7, but I had cancer. 2 of the 12 core samples had cancer cells present. I chose surgery and I have no regrets. That was 3 years ago.

Chuck67
Chuck67 in reply to BobJensen

Wow....how did you (or your Dr's) know to do a biopsy when your PSA was so low. DRE alone??

BobJensen
BobJensen in reply to Chuck67

Yes. DRE alone. He felt a nodule.

Not a question to ask, but more advice. Be sure that they monitor you closely (and do so yourself) for any sign of infection after a biopsy. Catching it early if it does occur makes all the difference in the world. Take your temp a couple of times a day at least, and be very aware of any changes to your urination process.

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