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New diagnosis and now the journey begins....

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User
Posted 23 Sep 2022 at 11:07

Hello to all.

The story so far...

My 65yo husband had a blood test taken for a completely different reason a number of weeks ago, following which he got a call from his GP to say they had carried out a PSA test and his numbers were high (22) and they wanted him in so they could carry out an internal examination.  At that appointment he was told that the prostate was slightly abnormal (enlarged) and a little hard on the left side, so he was sent for an MRI scan.

A couple of weeks later we were sat in a waiting room at our local hospital and when the consultant called us in he explained that the MRI results showed a Likert 5 lesion.  At this point he asked if we had any questions, but quite frankly his method of delivery was blunt and we were reeling a little from the initial statement that the MRI scores range from 1 to 5 and he was a 5.  He went on to say the next step would be a biopsy and he may also be sent for a PET scan, because the MRI showed some sort of indeterminate bone lesion on the left side of his pelvis.

Last Sunday he had a transperineal prostate biopsy and today he received a call from a urology specialist nurse who gave him his results and his treatment plan will be considered at a team meeting next Weds, following by a telephone consultation with him on Thursday.

As soon as the first mention of a possible prostate problem was mentioned - I joined this forum and have spent a little while reading posts of newly diagnosed and those going through the various treatment options and have to say its really helped.

So, his results are T3a (3+4) N0 MX and he is going to have a CT scan to determine what the M stage is, although the nurse was reasonably confident it should be M0.    It's a huge relief to hear that it hasn't, or doesn't appear to have, spread into the lymph nodes or moved into the seminal vessels - but its still all a bit of a shock.  Neither of us have slept much recently, the waiting has been unbearable!

From having absolutely no symptoms of prostate cancer to a random blood test that suggested otherwise - he is now on a journey he never expected to be on.  I don't know what sort of treatments he will face or what they might suggest.  I guess its radiotherapy with hormone therapy or perhaps a prostetomy (both have been muted).  I know each persons experience is different, but I would very much appreciate thoughts on what may come next and anything the should consider before he has that initial telephone conversation to discuss his treatment options.

Thanks (from his fairly anxious, whilst remaining positive, wife)

 

 

 

User
Posted 24 Sep 2022 at 20:47

Hey Suseka,

Your story so far, is similar to my own recent journey. Same digits. I am 20 weeks post op and feeling pretty good about life. I think Im surviving this cancer nonsense. I might even be kicking its arse. I hope so anyway. 

Your husband will get through this and hopefully have the same 20 weeks later attitude that I have. 

I say that confidently, Why?. Because he clearly has the anxious yet positive support that i too was extremely lucky to have.

So yeah, his recent news might not be great but the real news to him will be that he has you by his side.

He's a lucky man.

Warmest.

Jamie

 

 

 

User
Posted 13 Nov 2022 at 16:31

Well its been a while, but it took a little longer than expected for the CT and MRI scan results to be returned.   Thankfully both showed that no cancer cells have spread to the lymph nodes and there's nothing in his bones.  There is, however, a small area on his left lung that they want to keep an eye on - but he's had a pretty nasty chest infection over the last few weeks, so it's most likely attributable to that.  They want him to go back for another CT scan in 3 months.

Based on his results he has been put on hormone treatment and has been taking Bicalutamide 150mg for the last two weeks and on Friday he had his first 3 month dose of Decapeptyl (Triptorelin) via injection.  He also has an appointment at the Oncology Dept at the end of this month to discuss his Radiotherapy treatment, which I understand should start sometime mid-February 2023.

It's been a difficult few weeks, if truth be told, and unfortunately despite the 'good' news of his CT and MRI scans - his outlook is very much in the 'glass half-empty' camp.  I realise that he'd rather not have this thing at all and at the moment can only focus on that - but I'm hoping that he'll have minimal side effects of the HT and will start to feel more positive over time.

It really hasn't helped him having a nasty chest infection which needed antibiotics to help shift and the weather is crappy!!

Anyway, at least his treatment has started and all the tests are done for now.

 

User
Posted 13 Nov 2022 at 20:00
All sounds a plan , it will all fall into place . Deffo look at the positives no spread . Ref side effects of injections , it varies to each person , nite sweats , bone aches , depression , extra weight ? Try and keep penile health ,it doesnโ€™t seem you are going to have many injections which is good , if your rt starts mid feb . Once you get your plan , how many fractions, ask on forum for some very very good tips to manage the situation , remember this disease is so so common 1 in 8 men . Cheers all the best
User
Posted 13 Nov 2022 at 20:10

Make sure he gets a Tamoxifen prescription to prevent sore nipples developing. Far better to take it now before they start hurting.

User
Posted 25 May 2023 at 21:35

So... time has move on.

I had fully intended to keep progress updated when I first posted.  But, truth be told, it's been a difficult time over the last few months.  Not just because of this situation, but other life issues that have been challenging.

However, I wanted to complete the story.  So, hubby was scheduled for his radiotherapy in late March, a 4-week treatment.  It wasn't the best experience... not because of the radiotherapy itself, but the prep that is required before each treatment.  Also, our hospital suffered issues with the equipment, so there were many days when he turned up 'ready' only to be told that he would have to wait because there was some problem or other and those waits ranged from anything between 40mins to 1.5 hrs - not ideal given the requirement to keep ones bladder and bowel at a certain level.  So, in itself those delays caused him quite a lot of stress.

But today he had his post-radiotherapy telephone consultation and I'm very pleased to say that his PSA is now back to normal levels at 0.78 compared to the pre-treatment level of 22 ๐Ÿ˜Š. He will remain on hormone treatment through to Aug 2025 and will have 6mthly checkups to monitor his PSA.

Thankfully he hasn't had too many side-effects of the HT thus far, but I imagine things may change as the months roll by.  He does have mood swings and hot flushes/night sweats - which remind me of my menopausal days (so I do understand those moments).  He is also gaining weight, which I guess might be another side-effect?

So today we celebrated the results by making the most of the South West sunshine; going for a nice leisurely stroll and then sitting by the seashore watching the waves and listening to the sound of the sea.  We took time out to just enjoy life, which is what the oncologist said we should do as she ended the conversation.

I guess he is still on a 'cancer free' journey, but we are very grateful that it was caught early and I totally appreciate it's not the same for all.  I might now actually start to sleep more soundly and be grateful for the small things ๐Ÿ™‚

 

 

 

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User
Posted 24 Sep 2022 at 00:35
You are correct that the choices may be HT/RT or prostatectomy - or possibly RT / HT and brachytherapy combined - but I think best to wait for the bone scan and clarification of the suspect area seen on the MRI before you spend lots of time deciding which treatment option you want. In the meantime, if not already done so, download the toolkit or give the nurses a ring on the number at top of the page) to order a hard copy.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Sep 2022 at 18:38

Your husband's situation sounds quite similar to mine. My treatment has started - HT now, and RT probably early in the new year.

The HT started with a 21 day course of tablets - Bicalutamide - basically to stop existing testosterone from being available as fuel for the cancer to grow. The next stage, Zoladex injections, started 2 weeks after starting on Bicalutamide with injections to take place every 12 weeks. Zoladex works by shutting down the production of Testosterone.

My experience so far has been that I haven't really suffered any side effects, other than a marked reduction in libido, but I understand it may be too early in the process (less than 3 weeks since the first Zoladex injection) to be confident that there won't be more noticeable effects going forward.

I found that getting to know some of the common side effects in advance enabled me to plan for their mitigation. For example, I've increased my level of exercise and cut down on caffeine (drinking more herb teas).

Regarding worry and difficulty sleeping, I went through exactly that in the time between getting the high PSA reading and having the diagnosis confirmed. I actually found it easier to deal with once I knew what the diagnosis was as some of the worst case scenarios were no longer playing on my mind.

Anyway, good luck going forward, and try to remain positive. The treatment for PC at the T3a level has a good success rate.

User
Posted 24 Sep 2022 at 20:47

Hey Suseka,

Your story so far, is similar to my own recent journey. Same digits. I am 20 weeks post op and feeling pretty good about life. I think Im surviving this cancer nonsense. I might even be kicking its arse. I hope so anyway. 

Your husband will get through this and hopefully have the same 20 weeks later attitude that I have. 

I say that confidently, Why?. Because he clearly has the anxious yet positive support that i too was extremely lucky to have.

So yeah, his recent news might not be great but the real news to him will be that he has you by his side.

He's a lucky man.

Warmest.

Jamie

 

 

 

User
Posted 25 Sep 2022 at 08:53

Thank you for your helpful and informative (and also very kind) responses.

I totally agree that its better knowing exactly what the TNM stage is - rather than all those weeks of worry and speculation, always thinking the worst.  I've certainly had a better nights sleep since the phone call from the nurse on Friday.

I encouraged him to go play a short round of golf, so he would finally concentrate on something else for a change and it certainly helped his current state of mind.  He's still quite anxious about the CT scan and also keen for Thursday's consultation to arrive so he has a sense of what's to come.

Although he's not like me (who likes to research things) nor is he a forum type person, I've encouraged him to speak to his male friends, so they can understand why he might not be acting like the cheery, easy-going, individual he usually is.

I have to say, given the stories and posts I've read on here (and despite the increase in media coverage on this topic), I had no idea how prevalent this type of cancer was in the male population.  I also think more should be said about the fact that many men are diagnosed with absolutely no symptoms whatsoever, much like my hubby.  Whenever I've listened to a media story, the prompt is always to get yourself checked out if you suffer with any of the associated symptoms - but not much, or at least not that I've picked up on, that emphasise you can potentially have PC without them.

Anyway, today the plan is to go for a nice long walk (we are lucky we live in a lovely part of the county). The sun is shining but the wind is low and the skies are blue - the perfect combination.

I will definitely come back and post after Thursday's consultation and (if I may) continue to update with my hubby's progress - if only to (hopefully) add to the good outcome stories and to give others the same sense of positivity I'm hearing.

Again, thanks - your responses are a great help :) 

User
Posted 13 Nov 2022 at 16:31

Well its been a while, but it took a little longer than expected for the CT and MRI scan results to be returned.   Thankfully both showed that no cancer cells have spread to the lymph nodes and there's nothing in his bones.  There is, however, a small area on his left lung that they want to keep an eye on - but he's had a pretty nasty chest infection over the last few weeks, so it's most likely attributable to that.  They want him to go back for another CT scan in 3 months.

Based on his results he has been put on hormone treatment and has been taking Bicalutamide 150mg for the last two weeks and on Friday he had his first 3 month dose of Decapeptyl (Triptorelin) via injection.  He also has an appointment at the Oncology Dept at the end of this month to discuss his Radiotherapy treatment, which I understand should start sometime mid-February 2023.

It's been a difficult few weeks, if truth be told, and unfortunately despite the 'good' news of his CT and MRI scans - his outlook is very much in the 'glass half-empty' camp.  I realise that he'd rather not have this thing at all and at the moment can only focus on that - but I'm hoping that he'll have minimal side effects of the HT and will start to feel more positive over time.

It really hasn't helped him having a nasty chest infection which needed antibiotics to help shift and the weather is crappy!!

Anyway, at least his treatment has started and all the tests are done for now.

 

User
Posted 13 Nov 2022 at 20:00
All sounds a plan , it will all fall into place . Deffo look at the positives no spread . Ref side effects of injections , it varies to each person , nite sweats , bone aches , depression , extra weight ? Try and keep penile health ,it doesnโ€™t seem you are going to have many injections which is good , if your rt starts mid feb . Once you get your plan , how many fractions, ask on forum for some very very good tips to manage the situation , remember this disease is so so common 1 in 8 men . Cheers all the best
User
Posted 13 Nov 2022 at 20:10

Make sure he gets a Tamoxifen prescription to prevent sore nipples developing. Far better to take it now before they start hurting.

User
Posted 25 May 2023 at 21:35

So... time has move on.

I had fully intended to keep progress updated when I first posted.  But, truth be told, it's been a difficult time over the last few months.  Not just because of this situation, but other life issues that have been challenging.

However, I wanted to complete the story.  So, hubby was scheduled for his radiotherapy in late March, a 4-week treatment.  It wasn't the best experience... not because of the radiotherapy itself, but the prep that is required before each treatment.  Also, our hospital suffered issues with the equipment, so there were many days when he turned up 'ready' only to be told that he would have to wait because there was some problem or other and those waits ranged from anything between 40mins to 1.5 hrs - not ideal given the requirement to keep ones bladder and bowel at a certain level.  So, in itself those delays caused him quite a lot of stress.

But today he had his post-radiotherapy telephone consultation and I'm very pleased to say that his PSA is now back to normal levels at 0.78 compared to the pre-treatment level of 22 ๐Ÿ˜Š. He will remain on hormone treatment through to Aug 2025 and will have 6mthly checkups to monitor his PSA.

Thankfully he hasn't had too many side-effects of the HT thus far, but I imagine things may change as the months roll by.  He does have mood swings and hot flushes/night sweats - which remind me of my menopausal days (so I do understand those moments).  He is also gaining weight, which I guess might be another side-effect?

So today we celebrated the results by making the most of the South West sunshine; going for a nice leisurely stroll and then sitting by the seashore watching the waves and listening to the sound of the sea.  We took time out to just enjoy life, which is what the oncologist said we should do as she ended the conversation.

I guess he is still on a 'cancer free' journey, but we are very grateful that it was caught early and I totally appreciate it's not the same for all.  I might now actually start to sleep more soundly and be grateful for the small things ๐Ÿ™‚

 

 

 

User
Posted 26 May 2023 at 00:26
Very good news . Naturally you are both greatly relieved and when you consider where you are now, it makes the unfortunate times during RT feel worthwhile
Barry
User
Posted 26 May 2023 at 07:17
Very good outcome. Please to hear it.

All the best,

Chris

User
Posted 26 May 2023 at 10:34

At the end of January, I had a psa test of 3.7, the previous year it was 0.7, a disciplinary jump, the family doctor asked for a urine culture and gave a referral to a urologist, the urologist sent me for an mri test, the urine culture showed bacteria, I received antibiotics and the psa dropped back to 0.75 when the mri answer came, the findings were a 1.5 mm lesion, Fridays 4 On the right side, everything else without involvement, the doctor referred me to a fusion biopsy before the biopsy, an MRI revision was done and another 5 mm tumor was seen on the left side. And without leaving the box I will return again before the biopsy psa 0.75 with such a value I would not get a biopsy +mri. The results of the biopsy only on the left side of the lesion 5 mm Freuds 3 Gleason 3+3 2 rolls out of 18, volume in 2 rolls 60/40 percent adenocarcinoma. A gps oncotest test showed a score of 23. Low risk, one of the consultants asked me to do a pet psma test. Another consultant said that it is not effective with low psa, despite this I did everything and it came out clean even in the prostate there was no absorption. All the oncologist and urologist consultants offered me active follow-up and I was told that I am at low risk, I am mainly concerned because of the low psa, and I will mention again that I found out because of a one-time psa jump due to a bacteria in the urine. I am worried because I heard that there are types of cancer that do not produce psa and it is difficult to monitor, I would do prostate removal surgery but again what will we monitor, I feel helpless and do not know what to do. Has anyone here heard of prostate cancer with such a low psa, or maybe I accidentally discovered more before it's enough to produce psa and also why a 0.5 mm touch with psa 0.75 is not visible in pet psma the doctors say that I'm fine and that I'm just anxious, but I think my case is very strange and different, please help me understand

User
Posted 26 May 2023 at 11:04
If you had one of the rare types that does not produce PSA this would have been identified at biopsy and you would not have been considered suitable for AS. You have adenocarcinoma, a type of PCa which produces PSA. You were just diagnosed very early with a low risk, very small, low grade cancer.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 May 2023 at 11:11

Do you think the psa will come up later?

User
Posted 26 May 2023 at 22:46

Hey avi... I'm not sure I can help with your personal situation.  But you might find it better to start your own thread so people can follow and post responses that relate to you direct.

You've posted on my thread which isn't general and I think its best you reach out to a wider audience :) 

 

 
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