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Slight rise in PSA

User
Posted 03 Dec 2021 at 16:05

Just after some reassurance my husband's PSA test has came back with a slight rise again with the previous 2  tests sitting at 0.22 then 0.26 and the most recent at  1.16....I know its under 2 but could it indicate an issue.

He thought the nurse may have not quite mixed his HT injection correctly on his previous 6 monthly treatment. He has to date compled 3x6 monthly injections and just had his 4th injection this week.  His Testosterone results have not been updated yet.

 

 

User
Posted 05 Dec 2021 at 20:14

Wait and see whether the PSA drops or at least stabilises at next couple of tests. If they decide that he is hormone resistant, they may add an additional treatment or they might just change him from decapeptyl to something else like prostap to see whether it is just the deca that he is resistant to.

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

User
Posted 22 Dec 2021 at 12:15

Moozel, don't try and solve everyone's problems. I know you will, that's what nice people do. But when you finally get too exhausted to deal with everything, take a break, and don't feel guilty for doing so. These are random bad things, which sadly have landed on your plate, but you don't have to take responsibility for any of them. When you need to rest then rest. If you burn yourself out then no one's getting any help and you are another casualty.

Dave

User
Posted 22 Feb 2022 at 16:14

I think I understand the terminology correct. A primary tumour is in the organ and of the same type of cell as that organ. A secondary tumour is the same type of cell as the primary tumour but in another part of the body (it has metastised).

So if what I'm saying is correct, your OH has primary and secondary prostate cancer which is not responding well to HT. and now completely separately has lung cancer.

The lung cancer won't be responsible for the PSA and I assume the two cancers don't interact, but having two is bad news.

It is possible the lung tumour is secondary prostate cancer. Still bad news, but at least then you would only be treating one kind of cancer cell.

Dave

User
Posted 22 Feb 2022 at 21:24
I might be wrong but usually, if they believe the tumour in the lung is a prostate cancer met, the man isn't referred to a respiratory / lung specialist - the case and management stays with the prostate oncologist.

There is a type of cancer called small cell carcinoma which likes lungs and prostates and is usually unresponsive to hormone therapy but it is extremely rare and would usually be picked up in the initial biopsy so treatment plan is adjusted accordingly.

Fingers crossed for you that the additional scan provides some certainty and a plan. You have so much on your plate - do you have a good support network around you?

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

User
Posted 10 Mar 2022 at 23:26

I don't really know what the normal protocol is. I think it quite possible that the images have not been assessed yet it is just over a week since the scan.

I think you will have to just learn to manage the anxiety. I would ask these two questions:

How will knowing earlier than 29 March improve things?

Even when you do get the news how will you be able to change the outcome, whether it is good news or bad news?

So I will repeat what I say to many people on this site. There is no point in worrying about something you can't change. You will just have to wait for the results.

 

Dave

User
Posted 11 Mar 2022 at 00:28
The images are taken by a radiographer who (usually) sends them to a radiologist to be interpreted - then the interpretation goes to the oncologist for a full diagnosis. I think with two oncology departments potentially involved, that could slow it down as well. Even if they were available, getting the results now would only mean that you have a bit of information without any context or indication of what the treatment plan might be?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Mar 2022 at 07:11
It's normal round here, consultants still have their fiefdom and you must comply..

Not sure I would want to interpret my own scan results so in this case it's probably best to get it from the horse's mouth.

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User
Posted 03 Dec 2021 at 20:45
The fact that it is rising while still on HT is a concern although it was 0.78 in Feb so hasn't really been stable at 0.2 for a sustained period. The testosterone reading will help understand what is going on.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 03 Dec 2021 at 21:34

My husband phoned his Urology nurse and she explained his Testosterone result was negligible....result wasn’t in with his gp.   He is doing another PSA test in a few weeks so I’m hoping it is just a one off blip possibly due to the previous injection not possible mixed correctly before being injected into him 🤞🏻  He has been on HT for 18 months and I’m hoping that it’s not an issue this soon in his treatment.

User
Posted 03 Dec 2021 at 23:31
No, if his testosterone is negligible there has been no problem with the hormone injection. If the rise was because the injection had been done incorrectly, his testosterone would be above castrate level.

See what happens at next test but it looks like he may be becoming hormone independent.

Has he had covid recently?

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

User
Posted 03 Dec 2021 at 23:44
No he hasn’t had covid and has had his double jabs + booster....could a virus affect his PSA levels, (if he has had one and not known about it) he has not had any issues but his side affects have been more severe over the last few months with niggles & hot flushes. Tiredness is always an issue so no change!
User
Posted 05 Dec 2021 at 19:01

If he is already Hormone resistant would it mean just a change of HT drugs if he hasn't had a recurrence?? 🤞

User
Posted 05 Dec 2021 at 20:14

Wait and see whether the PSA drops or at least stabilises at next couple of tests. If they decide that he is hormone resistant, they may add an additional treatment or they might just change him from decapeptyl to something else like prostap to see whether it is just the deca that he is resistant to.

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

User
Posted 21 Dec 2021 at 14:28

Not a great start for our Christmas.. I was hoping for good news that my husband's PSA would have reduced or remained the same as his last test in the first week of  December but its raised again and now at 1.74, testosterone still below 1.... Scans now booked for January '22 

Edited by member 21 Dec 2021 at 14:57  | Reason: Not specified

User
Posted 21 Dec 2021 at 15:32
Sorry to see this Moozel - not what you want just before Christmas. Hopefully plan B will be put in place quickly in the new year.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Dec 2021 at 15:50

It’s all a bit much as I’m caring also for my younger sister that was diagnosed with a terminal brain cancer in June. She has 2 young children (one is disable) and is a single parent with a narcissist ex husband that has made her life a living hell since her illness...I was just about coping when Karl was stable so it another curve ball. I’m still hopeful it’s just a tweak of his hormone therapy drugs that are the cause for the rise 🤞🏻😭😭😭

User
Posted 22 Dec 2021 at 12:15

Moozel, don't try and solve everyone's problems. I know you will, that's what nice people do. But when you finally get too exhausted to deal with everything, take a break, and don't feel guilty for doing so. These are random bad things, which sadly have landed on your plate, but you don't have to take responsibility for any of them. When you need to rest then rest. If you burn yourself out then no one's getting any help and you are another casualty.

Dave

User
Posted 11 Feb 2022 at 18:38

Having a meltdown after my husband's oncologist called this evening with news from his recent CT Scan.

He has spots on his back and potentially left lung...another scan needed to confirm what is going on in his lung.

 

Any advice would be appreciated for what treatment he is likely to be offered or what we should be asking about

The wind has been knocked out of me as...we were hoping he would be curative :(

User
Posted 13 Feb 2022 at 19:52

Sorry to hear this Moozel. Life is not dealing you a good hand. He hasn't responded well to HT. The cancer is beyond the prostate (unless the scans are wrong). I can only guess that enzalutamide, arbiterone or chemotherapy are next in the arsenal. To be in this position a year or two after diagnosis is very unfortunate. I really hope something can stop the clock on his cancer. We have had people live a long time after being diagnosed with mets but that does rely on the cancer responding to the drugs.

I don't know if any clinical trial would potentially be of help? You are clutching at straws if you take this route. I think that whatever is offered in a clinical trial is considered to be at least as good as the current standard of care, may be better, but could be worse, could have unknown side effects. Even if it doesn't help your husband it may help future generations (only a small consolation).

Dave

User
Posted 14 Feb 2022 at 08:12

 

Thank you for the reply Dave64diag2018.....I’m hoping the scan is incorrect. We meet with his oncologist on the 22nd February , so will get a clearer picture of what they have found and what tests he will have to confirm if it has spread or not.

I'm wondering if he would be in this position had he been offered a round of chemo at the time of his radiation therapy. I did ask for chemo at the time due to his diagnosis of spread outside the prostate. The consultant was confident it was contained in the pelvic area and the treatment of radiation and hormone therapy would be sufficient.

 If it is confirmed as a definite spread, how likely is the original cancer to have been an adenocarcinoma only or can this type mutate?

After reading many posts in this forum it sounds like his cancer hasn’t followed the normal behaviour...suppressed whilst on treatment. 

 

 

 

 

User
Posted 14 Feb 2022 at 12:34

Originally Posted by: Online Community Member

....I’m hoping the scan is incorrect..

 

That was my attitude as I went through all the diagnostic tests. First test showed 50% chance of cancer, being a glass half full guy, I looked on the bright side. Each subsequent test gave less chance of a lucky break. So you are right to look for positives, but don't be surprised by negatives.

Originally Posted by: Online Community Member

I'm wondering if he would be in this position had he been offered a round of chemo at the time of the radiation

 

 

Cancer is nearly always over treated, with really unpleasant side effects. Non medics like us, would probably try and amputate the lower half of our bodies to be rid of cancer. Thankfully the medics take a more balanced view. No Chemo was the right decision at the time, so looking back and using knowledge which you didn't have at that time is pointless. Had he have had chemo he would have had more side effects and probably still have had cancer now anyway.

Originally Posted by: Online Community Member

 If it is confirmed as a definite spread, how likely is the original cancer to have been an adenocarcinoma only or can this type mutate?

Apparently it never changes type, so whatever it started as it still is. There is a very small chance it is two completely separate cancers of different types.

Originally Posted by: Online Community Member

After reading many posts in this forum it sounds like his cancer hasn’t followed the normal behaviour...suppressed whilst on treatment. 

I have to agree with you. This is not the way prostate adenocarcinoma normally behaves. Is it a rarer type of cancer? I don't know. If it is would identifying that earlier have increased his chances of survival? probably not.

Dave

User
Posted 22 Feb 2022 at 14:21

Some answers and more questions today for us on what is going on with my husband's rising psa.

He has 2 small spots to the bone near his shoulder so starting Enzalutamide to stop the spread and lower his psa so hoping for a good result.  

However felt like a blow to my stomach when we were told it appears his has a primary lung tumour so having a PET scan and being referred to a respiratory and lung specialist.

Another waiting game for us 😭😭

 

User
Posted 22 Feb 2022 at 16:14

I think I understand the terminology correct. A primary tumour is in the organ and of the same type of cell as that organ. A secondary tumour is the same type of cell as the primary tumour but in another part of the body (it has metastised).

So if what I'm saying is correct, your OH has primary and secondary prostate cancer which is not responding well to HT. and now completely separately has lung cancer.

The lung cancer won't be responsible for the PSA and I assume the two cancers don't interact, but having two is bad news.

It is possible the lung tumour is secondary prostate cancer. Still bad news, but at least then you would only be treating one kind of cancer cell.

Dave

User
Posted 22 Feb 2022 at 20:22

Originally Posted by: Online Community Member

So if what I'm saying is correct, your OH has primary and secondary prostate cancer which is not responding well to HT. and now completely separately has lung cancer.

 

Yes that is correct if the oncologist is correct, time will reveal after the PET scan and biopsy.

 

 

The lung cancer won't be responsible for the PSA and I assume the two cancers don't interact, but having two is bad news.

 

The consultant explained that Lung cancer cells give off hormones so that could be a blessing for an early diagnosis as it could have also been the reason for the psa rise.

 

It is possible the lung tumour is secondary prostate cancer. Still bad news, but at least then you would only be treating one kind of cancer cell.

 

If the lung tumour is prostate and secondary would that be easier the treat than a lower grade lung cancer?? 

User
Posted 22 Feb 2022 at 21:24
I might be wrong but usually, if they believe the tumour in the lung is a prostate cancer met, the man isn't referred to a respiratory / lung specialist - the case and management stays with the prostate oncologist.

There is a type of cancer called small cell carcinoma which likes lungs and prostates and is usually unresponsive to hormone therapy but it is extremely rare and would usually be picked up in the initial biopsy so treatment plan is adjusted accordingly.

Fingers crossed for you that the additional scan provides some certainty and a plan. You have so much on your plate - do you have a good support network around you?

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

User
Posted 22 Feb 2022 at 21:33

We have an amazing network of family and friends but I'm also caring for my sister who has 2 young children, she was diagnosed with  a terminal Glioblastoma Multiforme in June.

 

I'm just praying that his tumour is grade 1 and can be either removed or blasted with targeted Radiotherapy....hopefully it's not small cell 🤞

 

I'm also hoping that my husband responds well to enzalutamide for many years 🙏 

User
Posted 22 Feb 2022 at 23:55
My mum & nana both died of GBM - it is a terrible, brutal cancer. Thinking of you all x
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Feb 2022 at 07:12

I lost my brother in law to a gbm4 10 years ago so appreciate what my sister is facing and what your family have endured.

 

Thank you everyone for your kind answers and support.

User
Posted 10 Mar 2022 at 21:39

My husband had a PET scan last Wednesday 2nd March and has contacted the hospital for the results. Is it normal to be told to wait to discuss the results at the next oncology meeting which isn't until the 29th March??

The wait is unbearable!! We already have been prepared for news of Lung cancer or pca mets :(

User
Posted 10 Mar 2022 at 23:26

I don't really know what the normal protocol is. I think it quite possible that the images have not been assessed yet it is just over a week since the scan.

I think you will have to just learn to manage the anxiety. I would ask these two questions:

How will knowing earlier than 29 March improve things?

Even when you do get the news how will you be able to change the outcome, whether it is good news or bad news?

So I will repeat what I say to many people on this site. There is no point in worrying about something you can't change. You will just have to wait for the results.

 

Dave

User
Posted 11 Mar 2022 at 00:28
The images are taken by a radiographer who (usually) sends them to a radiologist to be interpreted - then the interpretation goes to the oncologist for a full diagnosis. I think with two oncology departments potentially involved, that could slow it down as well. Even if they were available, getting the results now would only mean that you have a bit of information without any context or indication of what the treatment plan might be?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 11 Mar 2022 at 07:11
It's normal round here, consultants still have their fiefdom and you must comply..

Not sure I would want to interpret my own scan results so in this case it's probably best to get it from the horse's mouth.

User
Posted 11 Mar 2022 at 20:58

An appointment was received today in the post with the respiratory specialist for the 22nd March so at least it is a little closer and less of a wait for the results and potential treatment plan.

I will take it that the news cannot need immediate action if they have not pulled him in earlier. 🤞

 

Edited by member 11 Mar 2022 at 20:59  | Reason: Not specified

User
Posted 22 Mar 2022 at 17:57

Just an update the PET scan has shown a definite area of concern in his lung along with a couple of lymph nodes in the chest. A EBUS biopsy is required to identify if its prostate spread or a primary lung cancer.

 

More waiting until we get a full diagnosis and staging so we can have a treatment plan.

 

 

Edited by member 23 Mar 2022 at 07:50  | Reason: Not specified

User
Posted 18 Apr 2022 at 09:33

Just an update after my husband had his EBUS (lung) biopsy.  We received a call  6 days after the procedure to meet with the respiratory specialist the next day, which was last Wednesday. We were hopeful that it would lead to finally receiving a diagnosis and treatment plan.

We attended the meeting to be informed that they only biopsied the affected lymph nodes in the lung/chest area and not the lesion!  This confirmed the results of the previousq PET scan that cancer  was present. Unfortunately the samples were not good enough to identify if it was prostate or lung cancer so another PET scan with a different contrast has been requested to confirm the type of cancer.

It's so frustrating and worrying that it is delaying any treatment plan.

We hope the PET scan happens within 2 weeks and shows exactly what cancer is in the lungs.  At least the enzauldamide has reduced his psa to 4.3 so heading in the right direction.

We have a holiday booked for the 13th May to Eurpoe, so it's going to be tight to decide if we need to postpone it. We have no travel insured for Karl as it expired 2 years ago when the holiday was booked to take place. 

I now need to attempt to gain insurance whilst he is under investigation., any insurance advice would be greatly appreciated. I did believe we would have had a diagnosis by now to have bought the holiday insurance :(

User
Posted 11 May 2022 at 14:09

We met with the respiratory consultant yesterday to received the results of my husband's last PET scan...its been a journey since December when his PSA first started to show slow but significant increases.  He has a primary Lung cancer and not prostate spread, whilst I'm gutted he has yet another cancer to fight, I do feel relieved it's not prostate spread to the lung as he seems to have a better chance of beating the lung cancer

Surgery will happen quickly to remove the lower left lobe and affected lymph nodes with Chemo infusion to follow once he recovers from the surgery.

 

He has a hard journey ahead but we are up for the fight back to good health. 

 

Here's hoping the enzauldamide works wonders for the prostate spread and he remains stable for many years.

 

Moozel

 

User
Posted 11 May 2022 at 15:51

Hi Moozel,  sorry to hear that your husband now has primary lung cancer.  Hope all goes well with the operation and chemo.  As you say, another hard fight ahead, stay strong and remember to look after yourself too.

All the best to you both.

Ange x

User
Posted 11 May 2022 at 17:07

Sorry to read this Moozel, I hope the treatment sorts out the lung cancer and that your husband copes well with it. 

Ido4

 
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