Husband recently diagnosed, wait for mri

User

Posted 26 Oct 2016 at 20:33

My husband is 49 and recently diagnosed with prostate cancer we have two children 11 & 15.

As a family we are trying to get our heads around all that we have been told, he has a Gleason score of 6 which we understand is deemed low grade but we have to wait 20 weeks from the time that he had the biopsy before they can do a MRI to make sure it hasnt spread anywhere else.

This seems a rediculous amount of time to wait and my husband is petrified that he is wasting time just waiting while it could be spreading, is it normal to wait that long?

Thankyou in advance

User

Posted 26 Oct 2016 at 21:57

Hi Harty
And welcome to the site, but sorry that you find yourself here :-( I am the daughter of someone with P/C 20 weeks is a very long time to wait between biopsy and MRI, It took around about 20 weeks in total from my dads first PSA results then biopsy then MRI then bone scans and finally surgery, Some of the more knowledgeable members may be able to offer a better insight as to why such a long wait,
This early stage you and your family are at is just awful, I remember it well, (my dad was diagnosed back in may of this year) the uncertainty, worry and sleepless nights were just the worst BUT it honestly does get easier once you get over the initial shock and your husband has all his tests done and you have a treatment plan to focus on it gives you a little control back and something to focus on,
Please keep us updated
Viv x

The only time you should look back is to see how far you have come

User

Posted 26 Oct 2016 at 22:17

I think there has been a muddle somewhere - the nHS guidance is to wait two weeks after biopsy NOT 20 weeks! Perhaps a good idea to give the PCUK specialist nurses a call tomorrow for advice before you go back to your husband's hospital team? The number is at the top of this website page.

Just as a bit of reassurance, Gleason 6 is generally considered to be not capable of spreading so your hospital may be dawdling because they are fairly confident. That doesn't make it acceptable but will hopefully calm your anxiety a bit.

What was his PSA and how / why was he diagnosed?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Oct 2016 at 22:37

Hi Harty

I'm 46, have two teenage children, one just about to do her A levels and one his GCSEs. I don't know as much as some of the other posters on this site as I'm new here too. I had a random PSA test and within two weeks have had my initial consultation and mpMRI. I think I'll have a biopsy in about three weeks. I already have an appointment for mid-December to see the consultant to discuss scan and biopsy results. Maybe I've just been lucky with dates and appointments, but your husband's plan seems slow. Does where a person lives make a difference? Anyway, as others have advised, talk to a specialist nurse from PCUK - they're brilliant and will either answer your questions or help you formulate the questions you need to challenging the doctors with.

Walter

User

Posted 26 Oct 2016 at 22:44

It does seem a rediculous length of time to wait, which I questioned when we were told the diagnosis and we were simply told it takes that long for the prostate to settle down.

My husband has since phone our assigned specialist nurse to re clarify what we thought we heard regarding the 20 week wait to see if we heard right and she confirmed that yes that was the case but he will have another PSA test before then. PSA level is 2.3 so could be a case of them not thinking theres any real urgency but doesnt stop us worrying.

He was told he could go home & decide what action he wants to take the active surveillance, radiotherapy, brachitherapy or surgery but he feels he doesnt want to make a decision until hes had the mri but with a 20 week wait hes getting more anxious as to what to do.

The diagnosis was discovered after he was weeing excessively with a real urgency & then one day there was visible blood on his urine which then happened a fee more times, he went to his go who referred him to a urologist who checked his prostate & found a nodule on it so was booked in for a biopsy a few weeks later.

User

Posted 26 Oct 2016 at 23:52

He can't possibly decide which treatment is best (or whether he is best to go for active surveillance for a while) until he has had the scan. Were you told how many cores were affected and / or what percentage?

In effect, it seems they have put him on AS for 20 weeks - that isn't such a crazy thing to do but it would have been better if they had explained that to you properly.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Oct 2016 at 00:19

Sorry to see you here.

You should be aware that an MRI scan is not guaranteed to show whether or not the Cancer has spread, or contained. There are numerous incidents where a mistaken interpretation of an MRI has suggested a cancer is contained, when in fact it is not. It's only a rough guide. Sadly.

This may be down to a poor image, or inexperience by the viewer?

Many people have found that the cancer is not contained, or in my case, is touching the wall, on operation.

I bitterly regret the 2 months delay between my diagnosis and my RRP operation. Had I been operated on earlier maybe my Cancer would not have been touching the wall of the gland, and I would not be living in dread of a future cancer spread.

I had 3 from 8 biopsy cores showing cancer. These were worryingly misleading results.

I supposedly had a "Slow Growing cancer", nothing to worry about? Wrong.

I wish I taken action sooner.

Research wisely, not too widely, and make you choose what is best for you. Don't look back, there are no second chances.
best of luck

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 27 Oct 2016 at 01:36

Correct that nothing more MAY be gleaned from MRI but whilst Gleason 6 could be a correct interpretation of what was found, there is no guarantee that the biopsy didn't miss some higher grade Gleason in the biopsy. It would be interesting to know whether the wait at the hospital for MRI is because of the low PSA and Gleason as well s the type of cancer identified from biopsy.

A lot of anguish with PCa is caused by an individual's situation not being fully explained and long waits for tests, findings and treatment. When a man has a better understanding of PCa in general and of his situation in particular, it can help reduce some but of course not all of his concern.

Barry

User

Posted 27 Oct 2016 at 09:12

Hello. My other half was 57 on diagnosis, we have 3 young children, the youngest only 5 at the time (2 years ago) he had the biopsy first. Gleason of 6 with PSA of 3.7 He did have an MRI within a few weeks. But I have read that the MRI shouldn't be done too soon after the biopsy as it isn't clear enough with the damage done by the biopsy.

We were told with a Gleason of 6 and a PSA of 3.7 it won't have spread and were not offered a bone scan. It is different from hospital to hospital as I've seen people on here with the same Gleason scores that have had a bone scan. With our readings my OH was encouraged to do active surveillance and have regular PSA tests and biopsies.

They gave us 5 months to go away and consider treatment options or whether to stick to active surveillance. They said there's no rush for treatment. After the 5 months the PSA was 4.9 so he decided to have brachytherapy. Also as he's a farmer it was a quiet time of year to have treatment. (January) his fear was needing treatment during harvest or another busy time. So he took it then. But I don't think there was even a rush then as the consultant was still encouraging active surveillance.

Do push for the MRI if you're worried. I think the hardest part is trusting the consultant and of course the waiting.

User

Posted 27 Oct 2016 at 10:39

Thankyou for all your help.

He had 13 biopsy samples taken and 6 were cancerous.

He knows the best thing to do is just to have the prostate removed but like i said he's reluctant to make that choice until after the mri and if what we are being told is correct....its low grade....un likely to spread he feels he could have it out when it wasnt needed.

There's just soo much to take in Ive been reading on here that yes they get it wrong and its not really clear how much you have it until they remove it, if you have therapy you then cant have it removed, mri isnt always accurate, so it appears the only option is sugery.

We have been told within the 20 week wait if he does decide he wants to opt for treatment then that would be fine he just has to let them know.

I believe they are guided by what ur psa levels are doing as to wether they think you need to act when you are under active surveillance, how high do they need to go before they think you should act?

Sorry I feel im going on a bit now!

Thanks Emma

Edited by member 27 Oct 2016 at 10:47 | Reason: Not specified

User

Posted 27 Oct 2016 at 10:59

My OH wasn't offered surgery. I don't know why it wasn't really mentioned. He went to the GP with bowel problems and the PSA test was just done as routine and prostate cancer found.(nothing to do with bowel problems just done as an r tea) I think they decided that due to having an upset tummy all the time that brachy was the best option. That's why surgery was dismissed. But we were given leaflets for each treatment and if we'd asked about surgery then I'm sure we would have been referred. But my OH didn't want surgery.

We decided on brachy early on. If we had stayed on active surveillance OH would have had to have a much bigger biopsy to check they hadn't missed a higher grade cancer. Then the consultant said more biopsies would be needed in the future to keep an eye on things. He said he was happy to wait until the PSA was 10 before doing the procedure. So I am assuming as long as the Gleason remained at a 6 (3+3) they were happy to keep him on active surveillance. But I'd read of people having a higher grade once a removed prostate had been examined. Also read of people with a lower PSA of 10 with spread. So this all put us off leaving it. Since brachytherapy the PSA is now 0.49 but with brachytherapy it is a few years till you know if it is successful.

Edited by member 27 Oct 2016 at 11:11 | Reason: Not specified

User

Posted 27 Oct 2016 at 12:50

Active surveillance is the right choice for some people, for all sorts of reasons - delaying the point where you have to live with the side effects being one. AS does not have to be a permanent choice and must be done properly to be effective - regular PSA test, annual DRE and annual scan at the very least and an occasional biopsy if it is thought that the disease may be changing. It isn't that there is a point where the PSA gets high enough to change from AS to radical treatment - it is based on a combination of factors including the rate at which the PSA is rising (aka the 'doubling time'), whether the prostate is starting to feel more firm or nobbly during the DRE, any signs on the scans that the affected area is changing and any increase in the symptoms.

Thinking that RP is the 'best' option is not necessarily correct - it wil be different for different men but statistically and all other things being equal, radiotherapy has exactly the same outcomes as surgery in terms of achieving full remission, survival to 10 years, etc etc but the side effects are quite different (in surgery the side effects are usually immediate but will for many men get better over time whereas RT side effects tend to develop a few years in the future). Brachytherapy hasn't been around quite long enough for there to be full 10 year data but it appears to be nearly as effective and with far fewer side effects (usually). And then there are other newer treatments that may not yet be widely available but will be in the future, I think - cryotherapy, proton beam therapy and others.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 28 Nov 2016 at 22:10

Hi Harty,

Sorry you all find yourself in this place but there is hope.

I was diagnosed at the age of 49 as well and I too was in complete shock and disbelief.

Please read my profile - I am still here - hail and hearty after 9 1/2 years.

You have stepped onto a rollercoaster and there will be lows but there will be a time when things are looking good and very positive , I am sure.

With all best wishes.

Peter Hyde

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