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PSA LEVAL HIGH

User
Posted 20 Oct 2017 at 20:33

SO WORRIED ABOUT MY HUSBAND ,BECAUSE A FRIEND WHO HAS JUST PASSED AWAY, ALSO HIS BROTHER WHO HAS GOT PROSTRATE CANCER WHITCH HAS GONE TO THE BONE.I NAGGED MY HUBBY TO GO FOR A PSA TEST . DRS RANG TO GO DOWN STRIGHT AWAY,TELLING US HIS LEVEL WAS VERY HIGH 75 NEARLY YOUR AGE HE SAID,  OUR GP FELT INTO HIS BOTTOM .SAID IT WAS QUITE SWOLLEN. SHE THEN REFERED HIM TO THE HOSPITAL,SAW A SURGEON WHO EXAMINED HIM AGAIN STRIGHT AWAY SAID YOU GOT A TUMOUR THERE, TODAY WENT MY HUBBY HAD NUCLEAR MEDICINE TO CHECK HIS BONES .WE ARE SO SHOCKED ,HES GOT SO SYMPTOMS. EVERY WHERE I READ ITS SAYING HIS PSA LEVEL IS VEY HIGH, HES HAVING BIOPYS ON THE 1ST NOVEMBER.,ANY ADVICE

User
Posted 15 Nov 2017 at 14:02

Hi 

Just found this hope it helps

Grade Groups are a new way to grade prostate cancer to address some of the issues with the Gleason grading system. 

As noted above, currently in practice the lowest Gleason score that is given is a 6, despite the Gleason grades ranging in theory from 2 to 10. This understandably leads some patients to think that their cancer on biopsy is in the middle of the grade scale. This can compound their worry about their diagnosis and make them more likely to feel that they need to be treated right away. 

Another problem with the Gleason grading system is that the Gleason scores are often divided into only 3 groups (6, 7, and 8-10). This is not accurate, since Gleason score 7 is made up of two grades (3+4=7 and 4+3=7), with the latter having a much worse prognosis. Similarly, Gleason scores of 9 or 10 have a worse prognosis than Gleason score 8.  

To account for these differences, the Grade Groups range from 1 (most favorable) to 5 (least favorable):

  • Grade Group 1 = Gleason 6 (or less)
  • Grade Group 2 = Gleason 3+4=7
  • Grade Group 3 = Gleason 4+3=7
  • Grade Group 4 = Gleason 8
  • Grade Group 5 = Gleason 9-10

Although eventually the Grade Group system may replace the Gleason system, the two systems are currently reported side-by-side. 

Don't deny the diagnosis; try to defy the verdict
User
Posted 22 Feb 2018 at 18:19

Merrivale, chemo can get rid of lymph node mets. It did for me. That location does not make it incurable. Hang in there and await the results!

Good Luck

AC

User
Posted 21 Oct 2017 at 20:35
Hello

I agree with Johan do not despair.

For your information my PSA was 88 and I am still here 3 years later and working part time. Until all tests and scans are done it is difficult to comment. If you come back with all the results and figures you will find people on here will be able to answer any questions you may have.

When you see the consultant do not be afraid to ask questions no matter how trivial you may think they are.

All the best to you both.

Please look after yourself as well as your other half and support each other.

Best wishes.

Glyn

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User
Posted 21 Oct 2017 at 13:01

Hello Bobbypoppy and welcome to the site

Yes PSA of 75 is very high but by no means the highest we have ever had on here ( in the hundred and thousands) and those men, although their PC is incurable, continue to live their lives to the full, albeit differently from before PC.

There are many drugs and treatments available for PC now and they even tweak them by adding things into the mix.

Chemo, for instance, cannot cure PC but can help another drug work more effectively.

Please don't despair yet either of you.

When he's had his scans please come back if you need to ask questions. There are many members on here, all at differing levels of seriousness and different treatments so somebody else is likely to have the information you need.

Good luck to both of you. Remember to look after yourself while you're looking after the other half. It's a stressful time at present but will (strange to say) become a little easier once a full diagnosis is made and treatment plans are underway.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 21 Oct 2017 at 20:35
Hello

I agree with Johan do not despair.

For your information my PSA was 88 and I am still here 3 years later and working part time. Until all tests and scans are done it is difficult to comment. If you come back with all the results and figures you will find people on here will be able to answer any questions you may have.

When you see the consultant do not be afraid to ask questions no matter how trivial you may think they are.

All the best to you both.

Please look after yourself as well as your other half and support each other.

Best wishes.

Glyn

User
Posted 21 Oct 2017 at 21:44
Hello,

I was diagnosed in January 2013, my PSA was 408 I had hormone therapy and radiotherapy, check out my profile by clicking on my avatar.

Check out the publications section of this website for the toolkit or you can download or order a hard copy.

Best wishes,

Arthur

Edited by member 21 Oct 2017 at 21:47  | Reason: Not specified

User
Posted 03 Nov 2017 at 20:28
Thanks very much, my hubby went for his biopsy last Wednesday, took 12 snips away, 6each side, he was then told it had gone through his bones, gutted, hoping it hasn't gone anywhere else, he's always been so healthy and fit, lived well, not smoked, likes a pint but not a big drinker, devastated, thanks for your replies

Edited by member 13 Nov 2017 at 02:38  | Reason: Not specified

User
Posted 03 Nov 2017 at 21:47

Unfortunately, by the time men reach their seventies more will have PCa than don't, though for most it will will progress slowly and they will die of something else often without even knowing they had it. Many will not even have any PCa symptoms or perhaps just more frequent visits to pass water which may be put down to bladder weakness due to age. The unlucky ones like your husband and quite a number of the men on this forum, (forums often include many worse case patients), have more aggressive/advanced cancer which would have stood a better chance of being cured or it's progress more significantly slowed if found earlier.

It is a further blow to be told the cancer has gone to bone because some treatments given to men diagnosed with early stage cancer will be ruled out and further down the line treatment offered instead. Sometimes RT is given to PCa that has gone to bone although this is usually to reduce pain that can be experienced.

I hope what treatment your husband has, works well and long for him.

Barry
User
Posted 03 Nov 2017 at 22:19

Hi
My husband was diagnosed with PSA over 1000 and extensive bone mets. Not curable but treatable. He's on hormone implants every 3 months and has just finished a course of 6 doses of Chemo. His PSA was down to 1.4 just before the last Chemo session. This seems to be working for him so hopefully they will be able to come up with a treatment plan that will work for your husband.

User
Posted 06 Nov 2017 at 01:12

Thanks very much for your replied, when he went for his biopsy surgeon said he's got 3 hot spots. Looks like cancer of the bone, but reading tonight it said could be arthritis, surly a scan of that kind couldn't be wrong, surgeon did say it looks suspicious, but he's got no pain, he's very fit, very well, can't get over the shock, what are your thoughts on this,

User
Posted 06 Nov 2017 at 10:14

The waiting for all the tests and the results is very hard. Until the results are known it is impossible to guess. Yes I know how hard this time is but hopefully it will get better when treatment starts.

User
Posted 06 Nov 2017 at 17:19

Bobbypoppy, it isn't a question of being right or wrong but of interpreting scan hotspots. Sometimes, it only becomes apparent with subsequent scans that there has been no change in the possible bone mets and therefore the arthritis diagnosis comes to the fore. Equally, if treatment shrinks the Mets, then it isn't arthritis. As we old boys tend to have suffered a lot of joint wear and tear over our three score years and ten (or whatever it is) there is usually some arthritis to be seen in bone scans. I certainty recall some suspicious spots showing ten years ago which are still there but no longer suspicious!

AC

User
Posted 12 Nov 2017 at 15:15

Biopsy will only reveal what the cores taken show. Sometimes more advanced scans give a better indication of the extent of the cancer but there are times when cancer has been found from Biopsy but not shown on even better scans or at least not definitive

A treatment plan will be devised and altered depending on how your husband responds.

Edited by member 14 Nov 2017 at 23:22  | Reason: Not specified

Barry
User
Posted 14 Nov 2017 at 21:24
My hubby been to see the oncology nurse today,not much nearer really having a meeting about him on Friday, not sure if it's in the bone or not, would of thought it would of been more accurate with having a nuclear medicine scan, but going to have another look then order him another scan, his grade was 2 thought that was quite low but still broke through the prostrate, God so confused ,
User
Posted 14 Nov 2017 at 23:26

I was diagnosed just over a year ago with mets to two areas of bone. The two areas were sites of previous injuries, albeit many years ago. My oncologist advised that it would be far safer to look at those areas as cancer rather than old injuries. I know it comes as a terrible shock and is very scary at first. Once a treatment plan is in place and you start seeing the effects of the treatment things will start to be less frightening. My PSA was 70 but started to drop once hormone therapy started and continued to drop. I also had 6 rounds of chemotherapy which finished back in February. By the end of that my PSA was at 0.1. At my last two hospital visits (3 months apart) levels were undetectable. I hope this make things a little less worrying.
Both of you take care and post back here as often as you need.

User
Posted 14 Nov 2017 at 23:36

Bobbypoppy, the bone scan only shows areas of growth / damage / activity in the bones - if there are only one or two small areas the scan cannot tell the difference between cancer and old injuries. Sometimes they know it is bone mets because of the number / size or position - perhaps your husband's grey areas are in unusual places? In some cases the only way they know it is cancer is by giving hormones - if the area gets smaller it is bone mets and if it stays the same then it isn't. The second scan that they are thinking about may be a more sensitive version.

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

User
Posted 15 Nov 2017 at 07:46
If the grade is only 2 could it still break through
User
Posted 15 Nov 2017 at 08:16

It depends what you mean by grade. Prostate cancer can be stage 2 - this is recorded on the results sheet as a T score (so T2) ranging from 1 to 4. It is broken down further into T2a, T2b or T2c. If it is staged as T2 that means it is still contained. If it has broken out that would be a T3.

The grade of a cancer is the Gleason grade - this goes from 1-5 although 1 is normal and 2 is hardly ever used in the UK. They take the 2 most prolific Gleason grades and add them together to give a Gleason score; G6 (3+3) would be the lowest and therefore least aggressive.

The other use of 'grade' is used in high definition scans to predict the likelihood of cancer being present. This is also scaled from 1-5 with grade 2 being 'low risk of being cancer'

My guess is that you mean T2 - which indicates that they believe it is contained. If it later becomes clear that the cancer has broken out, he will be upgraded to T3 or T4

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

User
Posted 15 Nov 2017 at 13:43
Thanks so much for your reply, but sorry to say I'm very confused still. We saw the oncology nurse yesterday, for hubby results on his biopsys, she said we don't use the gleason score any more it's the old fashion way of doing it, we just use the grade 1 to 5 and my hubby is 2,but everywhere I look they all seem to use the gleason score, it's looking like it could of gone to the bone, but they not sure, thanks very much for all your help
User
Posted 15 Nov 2017 at 14:02

Hi 

Just found this hope it helps

Grade Groups are a new way to grade prostate cancer to address some of the issues with the Gleason grading system. 

As noted above, currently in practice the lowest Gleason score that is given is a 6, despite the Gleason grades ranging in theory from 2 to 10. This understandably leads some patients to think that their cancer on biopsy is in the middle of the grade scale. This can compound their worry about their diagnosis and make them more likely to feel that they need to be treated right away. 

Another problem with the Gleason grading system is that the Gleason scores are often divided into only 3 groups (6, 7, and 8-10). This is not accurate, since Gleason score 7 is made up of two grades (3+4=7 and 4+3=7), with the latter having a much worse prognosis. Similarly, Gleason scores of 9 or 10 have a worse prognosis than Gleason score 8.  

To account for these differences, the Grade Groups range from 1 (most favorable) to 5 (least favorable):

  • Grade Group 1 = Gleason 6 (or less)
  • Grade Group 2 = Gleason 3+4=7
  • Grade Group 3 = Gleason 4+3=7
  • Grade Group 4 = Gleason 8
  • Grade Group 5 = Gleason 9-10

Although eventually the Grade Group system may replace the Gleason system, the two systems are currently reported side-by-side. 

Don't deny the diagnosis; try to defy the verdict
User
Posted 15 Nov 2017 at 14:43
Thankyou so much for your reply, we are in Shrewsbury Shropshire, yesterday the oncology nurse said here in Shrewsbury they have already stopped the gleason score, does that tally with you, I'm wondering if he has got it in the bone and what they see is wear and tear, this waiting is not nice, but we getting on with out life with fingers crossed, just back from a nice long walk, thanks again
User
Posted 15 Nov 2017 at 14:52
Sorry to keep asking what's this T stage ing, do they still use this with this new grading , hubby oncology never mention the T stage, just saying the gleason is now out of date.
User
Posted 15 Nov 2017 at 17:01

Hi, Have you had a telephone call with the Prostate Cancer UK Specialist Nurse, if not give them a call they will be able to help you understand all these numbers. Have you got any Prostate Cancer UK literature, if not the Specialist Nurse will sort out the right ones for you. Don't loose faith, at the beginning it is all very confusing and it is hard to take it all in the big C word blocks the understanding. Has your hospital assigned a hospital specialist nurse if not ask for one. My best regards and wishes.

User
Posted 15 Nov 2017 at 20:22

From what we see as reported diagnosis, the Gleason score is still the more widely used one to report how different from normal cells cancer cells have become. (This could change over time). With more advanced cancer cells there is a higher risk that the cancer will spread and be more difficult to eradicate. The T score on the other hand along with other staging criteria reports on how far it is believed the cancer has actually spread or if it is contained within the capsule. I believe it is less vital to have a higher Gleason in a contained prostate which can for instance be removed or dealt with by other radical treatment than a lower Gleason scored cancer which has for instance advanced beyond the prostate and beyond the ability of surgery to eradicate and possibly even beyond RT.

I hope the foregoing illustrates the differences between these two assessments which look at cancer from different aspects.

Barry
User
Posted 01 Jan 2018 at 14:49
Sorry long time since I've been on here, so I'll update you all, my hubby had his biopsys. One side showing up 75%other side of prostrate 25%. His PSA WAS 70 after a month of tablets, and one injections his PSA went down to 17, he's just had his second injection, in a months time he will be having a stronger injection lasting 3months,hes absolutely fine. But his oncology said he will become poorly, he's got to have 37 radiation shots. Feel quite worried bout that, hope it doesn't make him feel to worn out, I have an illness he's my rock, so feel very worried, when he had the nuclear medicine to look at his bones, there was a suspicious area of the pelvis, doctors were pretty sure it was cancer, he then had another MRI SCAN it looks more like wear and tear, so now they have f one another MRI in that area, bit confused again, his oncology said it handent broken out, so how could they still be looking at the cancer of the bone, then his Dr said it doesn't match up,his PSA LEVEL BEING 70 BUT HE'S COME OUT AT GRADE 2, VERY CONFUSED,

User
Posted 01 Jan 2018 at 15:10

It is two different things. The cancer can spread to the bones from tiny clusters of cancer cells moving in his blood but the main cancer has stayed inside the prostate gland and not broken the edges.

Imagine the prostate being an orange. The cancer is inside the orange and the skin is still intact so when you look at it, it looks like it would be nice to eat. It is only when you bite in that you realise it is rotten. Now imagine that someone sticks a needle into the orange and draws out some of the juice to put in a cake - the juice looks normal but it spoils the cake because it tastes rotten.

Not everyone feels poorly when they have the radiotherapy - my husband had no side effects at all so try not to worry about it unless it actually happens.

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

User
Posted 01 Jan 2018 at 16:43
So it still could be cancer, another scan been done waiting for results on last scan, we see the oncolog first week in February, why do they wait so long for radiation to start, doesn't start till April, then he said June and July he will have to recover,
User
Posted 01 Jan 2018 at 18:21

The longer you wait between starting hormones and starting radiotherapy the better. The hormones are starving the cancer which shrinks it and makes it weaker so the radiotherapy hits it harder. The average in the UK used to be 3 months and now it is most usually 6 months of HT first but there has been research that said waiting 12 months was even better!

Try not to feel impatient. The HT is doing its job and your specialist seems to know what he is doing. If they are still talking about doing radiotherapy it is because they believe it is curable (ie they don't think it is in his bones) and the scan is just to double-check.

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

User
Posted 08 Feb 2018 at 22:00
My PSA level has gone from 70 to 17, does anyone no any think of the stampede trail .OR who have been on this drug, my husband got to give an answer by Monday, we really don't no what to do,
User
Posted 08 Feb 2018 at 22:12

Which drug is he being offered Bobbypoppy? The stampede trial has been going for a very long time and has had many different drugs over the years. Lots of men on this forum have been or are still on the Stampede trial for one treatment or another.

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

User
Posted 08 Feb 2018 at 23:05
Sorry he's to be put on metformin, got to give an answer by Monday, really don't no what to do, starts radiation mid April, thankyou for replying so quickly.
User
Posted 09 Feb 2018 at 17:51

Hi,
Has he actually been told he will be taking Metformin? If it is part of the STAMPEDE trial for that drug then men who volunteer to be part of it are then chosen by computer to be either Arm A or in this case Arm K. A is the control group ie are part of the trial but don’t get Metformin while K do take Metformin and then the results are compared. I am on Arm A for that particular trial which just means I get bloods, a check up and a questionnaire to fill out every three months.

If your husband is being asked to sign up make sure you are given all the literature about it. I was only given the Arm A info initially but insisted that I be given Arm K info before making a decision because there are likely side effect with Metformin.

All the best

Dave

User
Posted 09 Feb 2018 at 18:11

Yes your quite right Dave, hospital ringing him on Monday, to see if he will accept going on it, then he has all these extra tests. Then fed into a computer, then they half it, so if he goes for it, then he's not chosen does he still get extra checks up, didn't quire take everything in,

User
Posted 10 Feb 2018 at 10:49

One of those extra tests is to see if he is diabetic because if that is the case he won’t be eligible for that particular trial as Metformin’s main use is to treat diabetes.

And yes, if he is chosen he will get the extra checkups & blood tests. If you choose not to take part it will not effect normal treatment procedures and if you do take part you can still change your mind at anytime.

Dave

User
Posted 12 Feb 2018 at 13:50
Hi hubby decided to go on this trial, goes in the morning for more check ups, hope he's doing the right thing,
User
Posted 12 Feb 2018 at 15:36

He has nothing to lose by joining the trial and possibly a lot to gain.

As I think has been said, he can leave the trial at any time. While he is on it he will get a lot more checks that if he wasn't won't he?

We can't control the winds - but we can adjust our sails
User
Posted 12 Feb 2018 at 18:39

The only thing that can be an issue is if he can’t tolerate side effects of Metformin if selected for Arm K. If that is the case he can withdraw at anytime - there are no penalties.

User
Posted 19 Feb 2018 at 20:52
Hi update on my husband, he's been accepted for the stampede trail, he starts on the metformin on the 8th March, just hope we doing the right thing, Then starts his radiotherapy middle of April, fingers crossed,
User
Posted 19 Feb 2018 at 20:55
Forgot to say his PSA LEVEL AT THE START WAS 70 THEN IT WENT TO 17, NOW TODAY BEEN TOLD ITS 2.3
User
Posted 20 Feb 2018 at 09:40

Great news on the PSA level , my OH has been on the stampede trial arm J for nearly 2 years and has had good results .
At the beginning we weren’t sure but the constant monitoring has been great ,luckily we live 10 mins from hospital and Gary’s work has been fantastic for allowing him time off .If at any time your OH feels it’s not right for him he can opt out but I think they may well offer to still monitor him for their data .
Best wishes
Debby

User
Posted 21 Feb 2018 at 21:24
Has your hubby not had any radiation, my hubby starts in April he's going to have 37 blasts, but he's not been offered any chemo, good luck, he's so young as well, all the best
User
Posted 21 Feb 2018 at 22:41

Men wouldn't usually be offered both Bobbypoppy - radiotherapy is a curative treatment and chemo is a treatment for men who are incurable.

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

User
Posted 22 Feb 2018 at 07:17

Unfortunately Gary’s is in the lymph nodes so incurable ,but if I remember rightly one off the options in arm j did include RT but he was given the chemo arm ( it’s all decided by a computer ) luckily he had very few side effects .
Gary is still on trial and still working full time ,which sometimes is a struggle with fatigue .
Best wishes
Debby

User
Posted 22 Feb 2018 at 18:19

Merrivale, chemo can get rid of lymph node mets. It did for me. That location does not make it incurable. Hang in there and await the results!

Good Luck

AC

User
Posted 22 Feb 2018 at 19:48

I am not sure what you mean AC - you weren't cured and have been on different treatment plans since then. Unless you just meant that the tumours in the nodes have shrunk? Maybe the scan was wrong and the lymph nodes just had some infection?

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

User
Posted 23 Feb 2018 at 18:05

Lyn, two separate points. 1. Chemo can zap mets in lymph nodes. 2. The fact of there being mets in lymph nodes does not of itself make the PCa incurable. It does mean there is a possibility of spread through the lymphatic system, of course.
My own experience is a whole different and varied story! I'm certainly not looking for a cure - survival will do nicely, thank you!

AC

User
Posted 23 Apr 2018 at 05:24
Is it safe to go swimming while on radiation, my oncology Dr said no but the nurse in charge of radiation says its fine, as long as the area is not sore .. Your thoughts please. Thanking you
 
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