Please help me understand my husbands PSA increase and diagnosis

Hello GwenJ 

A warm welcome to the Macmillan online Prostate Community - but I am so sorry to find you here.

A PSA test is a clue that Prostate Cancer is present but the biopsy will give you the true diagnosis, and yes, you are correct a PSA of 128 can indicate an aggressive caner and possible spread (although my initial PSA was 182 and no spread - but i am a lucky boy!!).

Below please find a link to our guide to the normal trans-perineal biopsy:-

https://www.macmillan.org.uk/cancer-information-and-support/diagnostic-tests/trans-perineal-biopsy

I would advise you to stick to trusted sources for your research, Macmillan, Prostate Cancer and this Community (not Dr Google). Feel free to ask any questions, we are all happy to answer any however trivial.

Waiting for the biopsy and results can be a worrying time for both of you and we are more than happy to offer our support, but do remember our support line is there for both of you on 0808 808 00 00 (8am to 8pm 7 days a week).

If I can do anything for you feel free to ask.

Best wishes - Brian.

Hi GwenJohn.

Good afternoon and welcome it's great to meet you today.

Yes I can see that you have already had a response from one of the team.

When I was diagnosed last June 2023 my initial PSA was 1000+ and we have a number of people on here that have had much higher numbers.

From day one I was put on Hormone Therapy "tablets and injections" which stops the cancer units tracks starving it off it's food "testosterone"

My numbers dropped significantly too single figures within weeks. I'm still on these to this day but my numbers have started to rise but there's plenty of "tools in the toolbox"

I have dropped some info below for you on the PSA Test and please let me know if you need any further help/info???

https://www.macmillan.org.uk/cancer-information-and-support/diagnostic-tests/psa-test

Prostate Worrier.

Hi Gwen 

Just one point missing, what does the MRI actually show, u mentioned that he had a scan.

The MRI report should show tumour size and location within the gland.

I realise that more tests have to be done but an understanding of the MRI could partially put your mind at rest

Best wishes 

Steve 

Hi !

Really sorry for the bad news.

Like Grundo said; they did a scan that showed the tumor. Like Grundo guessed I suppose it’s a MRI they did and normally they can do some analyze from the MRI if it’s localized or if it seems to have broken through the prostate.

Normally a PSA in that area means spread but there are many with high PSA that don’t have any spread.

The PSA has gone up rather fast so the biopsy may confirm a higher Gleason score.

Have they been talking about doing a PSMA Pet Scan? With that PSA level this type of Scan could confirm any distant spots outside the prostate or not

The arsenal of treating prostate cancer is huge with lots of possibilities and when they have diagnosed your husband it may be that they give you some different options and most likely will give the pros and cons. Then you also have fantastic people on this forum that can help you by answering questions or give you real life experiences to take with you in the decision making.

Best wishes - Ulf

Hi GwenJ , the waiting is horrible and we have all been through it, but even if the biopsy confirms cancer it is most likely curable.  As the others have said if the MRI scan hasn’t picked anything up outside the prostate, chances are his treatment options will be straightforward. Please come back if you need anything else. David

Thank you everyone for your kind words and advice , it’s very moving to find this place. 
The nurse phoned him with the results from the scan and he didn’t seem to take it in, he seems very unclear on what she said . He says ‘ the scan showed something that may be confirmed by the biopsy ‘ and ‘ she did say something about bones’ but he’s not sure what ?! I’ve suggested he ask to speak again but I think he’s avoiding it. If it has spread to bones what are we looking at - i understand that is serious - is there any chance a person can still live a good quality of life for a few years ? I just want to prepare a bit as I have a bad feeling about this. He’s had pains in groin and back for a while that haven’t been explained.

Many thanks 

G

Hello Gwen (GwenJ) 

When he gets his biopsy results they will be staged. As a rule of thumb 1,2 & 3 are curable, 4 & 5 are treatable. We have many Stage 4 & 5 Community members who have been with us for over 10 years.

Whatever his diagnosis, the fitter he is the better and healthy eating and drinking and exercise can help. Whatever treatment plan he gets fatigue is going to be his number 1 issue.

It might be an idea for him to ask his team for details of the scan results in writing. If he has the NHS App and you live in England if he asks his GP for "full access" to his medical records - you can keep track of most thing on the app.

I hope the above helps.

Best wishes - Brian.

Hello Gwen and a warm welcome from a wife whose husband was diagnosed with metastatic prostate cancer in July 2020 and he is still going strong. There are many treatments now which can treat and contain the cancer for years but it all depends on how your husband's particular type of cancer responds to it as well as how well he tolerates it. I would try and encourage your husband to call the nurse back and ask for more information as it is very difficult to take things in initially. I would also ask for copies of all the reports as often this will give more information. The starting point for most people is to try and find out more information about tests and what the results mean. Then there are the treatment options which are many depending on location of the cancer both regional and distant. Initially it will probably mean some months of treatment but once that has been completed you should be in the monitoring stage, hopefully for a long time. A lot of the information on Dr Google relates to historical treatment methods but nowadays a new generation of drugs and combinations of treatments are available which are producing a lot better results so please treat the information with caution.

This is a book you can download for free as a starter.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

Please ask whatever you like and we will try and help but until you have all the information try not to let your imagination run riot.

Thanks everyone so much. So, the doctor at the biopsy explained that the CT scan shows some ‘spots ‘ on the bones and pelvis and a spot on the kidney . So basically it has spread which I guess means it will definitely be stage 4 ? Does ‘spots’ usually mean that the spreading is not too extensive , and more likely to be treatable ? Weirdly the Doctor did not seem worried about the kidney spot , didn’t particularly mention treatment for that, I’m not sure why ? But he has started on hormone tablets and has a an injection next week for the bones . I know we have to wait for the biopsy for full picture but any advice on what these terms mean would be greatly appreciated . He is 73 and very fit and healthy . Many thanks to everyone it’s so nice to find this place. G 

Hello Gwen. Do not get hung up about the staging as you will find yourself going down a rabbit hole. What is more important is the TNM, Gleason and biopsy report but most important how the cancer reacts to the treatment. Lorraine started this link a couple of days ago which you might find helpful, particularly if you look at the video.

https://community.macmillan.org.uk/cancer_types/prostate-cancer-forum/f/general/286392/stage-4---also-excellent-discussion-about-hormone-treatment#pifragment-13906=5

Your husband has started on the hormone therapy which will work on the cancer no matter where it is in the body, bones and kidney included. The tablets are probably Bicalutamide which are given for few days prior to being given an injection/implant in order to reduce the testosterone flare caused by the initial injection. These injections will effectively castrate your husband and stop him from producing testosterone which feeds the cancer. From then on he will just have the injections on a 1,3 or 6 monthly or 28day, 12 weekly repeat depending on which one he is given. All prostate cancer is treatable and there are different regimes depending on how widespread it is when first diagnosed. For men with newly diagnosed cancer with multiple bone mets the latest thinking is to hit it hard and fast with a combination of a hormone injection, a second generation antiandrogen and chemotherapy (Triplet Therapy). This combination is usually started within 12 weeks of diagnosis and the order of administration is important. However alternate strategies are also showing good results so, unfortunately it is a waiting game to find out what the medical team decide.

The doctor said he is also starting an injection for the bones which is probably the biphosphonate. This should be taken with calcium and vitamin D supplements. Double check that this is happening and that you are not confusing the injection your husband is having in the next couple of weeks with the hormone injection/implant.

Keep asking the questions.