Hi all
Almost six months since my initial PSA reading of 12.7, three months since my MRI scan and five weeks since my biopsy, I finally have my results. The journey so far has been littered with admin and communication errors, but, at last, I can start to deal with this head on.
Results were provided over the telephone, so I don’t have all the info at this stage:
Gleason 7 (not sure whether it is 3+4 or 4+3 yet)
8 of 15 cores positive
Biopsy PSA 14.3 (This has increased form 12.7 in early July and 13.3 in mid August)
From the MRI scan, it’s previously been suggested that the malignant cells appear to be localised within the prostate capsule (posterior region). I’m hoping this will be confirmed at the MDT meeting, which is being held on Wednesday, after which I’m hoping to discuss the full diagnosis and my treatment options sometime next week.
From my telephone conversation, I'm advised that there are likely to be three treatment options:
- Prostatectomy
- Radiotherapy
- Brachytherapy
However, my own research suggests that Brachytherapy is usually only offered to patients with a Gleason score of 6 and a PSA of <10, so it may boil down to a straight choice between surgery or radiotherapy. My conversation was with a urologist, but he did state that he wasn't a prostate cancer specialist, so the suggestion of Brachytherapy may have been an incorrect assumption?
If I opt for surgery, it appears that my hospital here in Kent has the Da Vinci Robot and a more than capable surgeon. According to his website:
“To date he has experience of over 500 cases and is a recognised trainer and national mentor for robotic surgery”
From my research, he does appear to be well respected and have a very successful track record. Should this influence my decision making?
Irrespective of his credentials, I am leaning towards surgery as I understand that this can be followed up with radiotherapy if clear margins aren’t achieved, or there is a rise in PSA as a result of cells being spilled and/or left behind. Whereas, if I opt for radiotherapy, there are limited options in the instance of recurrence.
Is my understanding of this sound?
Does anyone know of any other treatments that may be available to me at an alternative hospital that I should possibly consider?
Thanks in advance for any advice, guidance or pearls of wisdom you can provide.
Martin ------------------- You never know how strong you really are until being strong is the only choice you have. |
User
Hello Metaxa.
The waiting is finally over and I bet it seemed like a very long time eh?
My John had Seed Brachytherapy with 3+4 and an eventual PSA of 6.3 so yes, less than 10.
I hope you get good information from the meeting and that you can make your plans accordingly.
I'm sure that others will be along to offer their advice
******
We can't control the winds - but we can adjust our sails |
User
Hi Martin
Your medical team are the best to ask about other forms of treatment as we each have different health backgrounds. Your age might be a strong factor in thier recommendation.
I take your point on brachy but don't rule it out as some consultants will stretch the criteria. If RT seems a possibilty after surgery then the ponder might me why have two treatments?
As regards surgery will the 500 under the belt consultant be the one actually doing the op or someone under the consultants guidance? Would that concern you?
I acknowledge after the delays you may be keen to having something done but take your time if making a treatment choice
Ray
User
Good luck Martin. My husband is awaiting biopsy results, so trying to learn from others re reasons for decisions made, options given and generally all Intel available. Thank you for the post
User
Martin
I'm not as much of an expert as others on PCa. I'm 46 and have just returned home today from having robotic surgery. My surgeon came as highly recommended as yours. If anything, it just makes you feel more confident. The other thing is, apart from a very sore urethra for 24 hours, I am completely pain free. It's been amazing. So, if you do decide on surgery, it is manageable.
I was told in no uncertain terms because of my age that surgery was the best option. I can have radiotherapy if they haven't got it all in the op. That swayed it for me. I wanted a back up plan.
Walter
User
This is not a rule but generally a man in his fifties is considered young and if appropriate would be more likely to be steered towards surgery by the medics. He would then be better placed if necessary to have salvage RT. Much older men are more likely to be steered towards RT as the side effects are generally milder and long term side effects such as late bowel cancer, which is quite rare as a RT induced disease anyway, are less likely to happen in the natural remaining life span. Of course there are exceptions to this reasoning but it is for the patient to discuss with his consultant(s) and make his decision on options that are open to him.
Barry |
User
Don't make the assumption that robotic surgery = best surgery. All the data shows that in terms of remaining disease free at 5 years, alive at 10 years, ED and incontinence open RP and LRP are identical. The data published in Autumn 2016 suggested that there is a slightly higher risk of positive margins with LRP and anecdotally (but only based on members of this forum) incontinence seems more likely with robotic.
So the data says each method is as good as the other; the main advantage of LRP is the shorter in-patient stay and quicker return to work. Some can't have LRP due to other medical conditions or previous abdominal surgery (appendectomy scars can get in the way, for example) or would rather be under GA for as little time as possible (LRP tends to take longer).
The most important thing is to determine which treatment is most likely to get you full remission straight off, and then decide whether you are prepared to accept the risks of side effects for that treatment. The idea of two bites at an apple is slightly flawed as anyone who needs salvage treatment is far less likely - statistically - to ever achieve remission.
Finally, just be a little cautious of any surgeon that has his own website - they are marketing tools and we have had a number of members over the years who were dazzled by marketing and then found that either a) the amazing consultant didn't actually do the op b) trainees did the op or c) the surgeon's ego got in the way of accepting that things might have gone wrong somehow. Read Capitalman's threads .. he had one of the so-called 'golden 10' as listed in the press and then found the surgeon would not engage with him when he was left with life-changing problems. You could also read posts from Sally&Mike who went out of area for one of the best surgeons and never saw him again after Mike came out of theatre - in that case the local CCG refused to take Mike back onto their books as well so he was left with little or no aftercare.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I also forgot to add Metaxa, that my husband was turned 70. Yes we were warned about the possibility of bowel cancer further down the line but that is a possibility anyway due to age, so for HIM Brachy was the best choice.
You have age on your side.
As far as having a surgeon overseeing the op and a trainee doing it under his guidance.
Well they all have to learn somewhere otherwise there'd be no doctors but..... I asked for reassurance by my consultant that he would so my surgery.
He assured me he would be there and I took that at face value. I wish I hadn't !
We can't control the winds - but we can adjust our sails |
User
Hi Martin
Re MRI scan. PCa is generally slow growing so I can't see it making a difference to the team recommendations. From your comments on receiving good medic care to-date I'm sure if they saw a need it would happen. Trusting in your team goes a long way in calming the nerves :-)
Ray
Edited by member 13 Dec 2016 at 09:36
| Reason: Not specified
User
As regards long term RT side effects I'm over 10 years since and all bowel scans have been clear. Only issues are peeing frequency and ED, both helped by pills.
User
Martin
I didn't ask the surgeon much about the operation. He said it had gone straightforwardly. I was so tired I thought I'd wait to get home and then ask my named nurse to give me an update. She is the fount of all knowledge to me and has explained things well up until now. My MDT meets on a Wednesday, so I'll phone on Thursday to see if there is anything she can update me with.
All I do know is that there was no nerve sparing and a few lymph notes were removed to go to the lab.
Walter
User
Hi Martin
I understand your logic. See my profile. I was not offered brachy. This is very pertinent to myself as older brother has just been dX so he is looking for my input into his final decision. I was dry after 48 hrs so my surgeon who I only meet on the day of op. (I had assumed another was performing op) so must have performed bladder work extremely well. NHS fantastic for me. Even though NNS, ED is progressing in the right direction after 20 months without any current medication so positive. Nothing at all for 18 months so I just keep positive. Gordon
User
Hi Metaxa, it isn't so much that newer surgeons start out on 3+3 grades or whatever. The difficulty is that now the surgeons have to publish their results to the NHS annually some will not operate on anything more than T1 and avoid complicated cases like the plague. An unintended (but foreseeable) consequence of politicians meddling in health care, I think :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hi Martin
Basically I am interested and do research re. The timing of biopsy. As you have seen my profile. I don't know if free psa was analysed. My brother in Australia has just been dx. Gleason 7. Same as me. However he was given 18% as ratio. His PSA was 3.57 and he's 69. His detailed mpMRI gave PIRAD analysis. Thats why we chatted at length this year, he stayed with us for 6 weeks and he organised a biopsy on his return. I was extremely concerned he was going to be dx higher than 7. Thankfully he has been offered all options. He may go with RT. The forum is excellent in my opinion because you can get an informed higher global view in many ways. Depending on your time. Have a view through member profiles. Some folks in UK seem to have been treated quite appallingly. I can not fault my
experience with NHS. I've only had appendectomy when aged 36 and vasectomy at 38. So engaging 'system' at 59 when I felt fit and healthy is all a little surreal. Fortunately PSA base level and trend gave me a good chance. Gordon
User
Yes, the system as it is now reinforces the natural tendency of surgeons to want to 'cherry pick' not only the less advanced cases but those which are more likely to give good results, thereby enhancing their reputations. Conversely, it is possible that you might find a surgeon with ostensibly inferior results but where this may be due to him/her accepting a higher proportion of more difficult cases.
Barry |
User
Hi Martin
I have been diaognised with PCa in early october 2016. My PSA was at28, all of the 12 biopsy samples turned positive with 15 to 80%. gleason 8. Luckily bone scan turned _ve.MRI confirmed that the cancer is within the gland. Specialists adviced me to go with RT and HT as their first option since mine they consider as high risk mainly because all samples turned +ve and PSA IS 28. I have to do RT even if I do surgery which was the second option.. Initially I wanted to do surgery thinking that it will clear me of cancer for ever, but that is not the case for me.
I decided to go with RT +HT and On 12 dec I had my first injection of HT. We have IMRT here, but I am still searching whether there is a better option in europe or UK.
From what I learned so far, surgery looks good for you . However your specialist will b the best person to advice after analysing all the results. As the PCa progress very slow, the test results will not change much within 3 months. I think they will do the MRI scan once again before starting the treatment.
User
Ah Metaxa, we have a shared professional interest as well!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
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User
Hello Metaxa.
The waiting is finally over and I bet it seemed like a very long time eh?
My John had Seed Brachytherapy with 3+4 and an eventual PSA of 6.3 so yes, less than 10.
I hope you get good information from the meeting and that you can make your plans accordingly.
I'm sure that others will be along to offer their advice
******
We can't control the winds - but we can adjust our sails |
User
Hi Martin
Your medical team are the best to ask about other forms of treatment as we each have different health backgrounds. Your age might be a strong factor in thier recommendation.
I take your point on brachy but don't rule it out as some consultants will stretch the criteria. If RT seems a possibilty after surgery then the ponder might me why have two treatments?
As regards surgery will the 500 under the belt consultant be the one actually doing the op or someone under the consultants guidance? Would that concern you?
I acknowledge after the delays you may be keen to having something done but take your time if making a treatment choice
Ray
User
Good luck Martin. My husband is awaiting biopsy results, so trying to learn from others re reasons for decisions made, options given and generally all Intel available. Thank you for the post
User
Thank you all and good luck with your husband's results, Claret. I know from my experience how stressful the not knowing is for both of you.
I guess I shouldn't rule anything in or out at this stage as the conclusions from the MDT meeting may close some avenues, depending on actual location of the cancer, size of the tumor(s) etc. However, If I were to be offered robotic surgery and could get a guarantee that the lead surgeon would carry out the procedure, rather than oversee it, I think it would definitely push me in that direction for two main reasons. 1. If all cancer is successfully removed, there is no prostate left, thereby reducing the risk of recurrence. 2. If there is post-op evidence of positve margins, or there is a biochemical recurrence later in life, the option of RT remains on the table for consideration.
I realise my knowledge is limited as I'm at the beginning of the learning curve, but as I understand it, if RT is chosen in the first instance, then options are limited should the cancer return as the prostate would be too damaged for a successful RP and would have already received too much radiation for a second programme of RT to be considered. That being the case, and the fact that the prostate remains in situ, increasing the chances of recurrence, is RP not an obvious choice if it is possible?
I feel that I must be missing something as a lot of people appear to opt for RT or Brachy. I'm thinking it may be to do with the severity of side effects; however, my reading suggests that issues with incontinence and ED appear to be hurdles irrespective of treatment. I've also read that RT can possibly lead to bowel incontinence and a risk of developing bowel or bladder cancer 5-15 years down the line. At 55, I feel this could leave a cloud over me for the rest of my life. My father died of bowel cancer when he was 81. I wasn't close to him until shortly before his death, but am now piecing together from family members that he possibly had radiotherapy for prostate cancer earlier in his life.
These are questions I'll certainly be posing next week, but as I have already developed a great deal of respect for the knowledge existing within this forum, I would really appreciate any pointers that would clear up any misunderstanding I may have?
One last thing - as my MRI scan is now 3 months old, how reliable will it be when being considered for staging at the MDT meeting? The chance that the cancer has spread since it was produced is causing me a few wobbles.
Edited by member 13 Dec 2016 at 00:34
| Reason: Not specified
Martin ------------------- You never know how strong you really are until being strong is the only choice you have. |
User
Martin
I'm not as much of an expert as others on PCa. I'm 46 and have just returned home today from having robotic surgery. My surgeon came as highly recommended as yours. If anything, it just makes you feel more confident. The other thing is, apart from a very sore urethra for 24 hours, I am completely pain free. It's been amazing. So, if you do decide on surgery, it is manageable.
I was told in no uncertain terms because of my age that surgery was the best option. I can have radiotherapy if they haven't got it all in the op. That swayed it for me. I wanted a back up plan.
Walter
User
Thank you Walter. It appears that my early reasoning is in line with your own.
It's reassuring to hear that your experience of the surgery has been relatively positive. Good luck with your recovery.
Did the surgeon give you any indication as to whether your prostate came out intact, or is that not known until it is examined in the lab?
Martin ------------------- You never know how strong you really are until being strong is the only choice you have. |
User
This is not a rule but generally a man in his fifties is considered young and if appropriate would be more likely to be steered towards surgery by the medics. He would then be better placed if necessary to have salvage RT. Much older men are more likely to be steered towards RT as the side effects are generally milder and long term side effects such as late bowel cancer, which is quite rare as a RT induced disease anyway, are less likely to happen in the natural remaining life span. Of course there are exceptions to this reasoning but it is for the patient to discuss with his consultant(s) and make his decision on options that are open to him.
Barry |
User
Oh, I see. Thank you, Barry.
This is all starting to make sense to me now and it's looking more and more likely that I'll opt for surgery, should the option be on the table.
Just so it doesn't get lost in the thread above - does anyone have any thoughts on the age of my MRI scan? Is a scan that's 3 months old likely to be representative of what's going on down there right now? I'm wondering whether to request a new scan to get a more up to date picture. 3 months seems a long time to me, especially as my PSA level appears to be rising fairly quickly.
Martin ------------------- You never know how strong you really are until being strong is the only choice you have. |
User
Don't make the assumption that robotic surgery = best surgery. All the data shows that in terms of remaining disease free at 5 years, alive at 10 years, ED and incontinence open RP and LRP are identical. The data published in Autumn 2016 suggested that there is a slightly higher risk of positive margins with LRP and anecdotally (but only based on members of this forum) incontinence seems more likely with robotic.
So the data says each method is as good as the other; the main advantage of LRP is the shorter in-patient stay and quicker return to work. Some can't have LRP due to other medical conditions or previous abdominal surgery (appendectomy scars can get in the way, for example) or would rather be under GA for as little time as possible (LRP tends to take longer).
The most important thing is to determine which treatment is most likely to get you full remission straight off, and then decide whether you are prepared to accept the risks of side effects for that treatment. The idea of two bites at an apple is slightly flawed as anyone who needs salvage treatment is far less likely - statistically - to ever achieve remission.
Finally, just be a little cautious of any surgeon that has his own website - they are marketing tools and we have had a number of members over the years who were dazzled by marketing and then found that either a) the amazing consultant didn't actually do the op b) trainees did the op or c) the surgeon's ego got in the way of accepting that things might have gone wrong somehow. Read Capitalman's threads .. he had one of the so-called 'golden 10' as listed in the press and then found the surgeon would not engage with him when he was left with life-changing problems. You could also read posts from Sally&Mike who went out of area for one of the best surgeons and never saw him again after Mike came out of theatre - in that case the local CCG refused to take Mike back onto their books as well so he was left with little or no aftercare.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I also forgot to add Metaxa, that my husband was turned 70. Yes we were warned about the possibility of bowel cancer further down the line but that is a possibility anyway due to age, so for HIM Brachy was the best choice.
You have age on your side.
As far as having a surgeon overseeing the op and a trainee doing it under his guidance.
Well they all have to learn somewhere otherwise there'd be no doctors but..... I asked for reassurance by my consultant that he would so my surgery.
He assured me he would be there and I took that at face value. I wish I hadn't !
We can't control the winds - but we can adjust our sails |
User
Hi Martin
Re MRI scan. PCa is generally slow growing so I can't see it making a difference to the team recommendations. From your comments on receiving good medic care to-date I'm sure if they saw a need it would happen. Trusting in your team goes a long way in calming the nerves :-)
Ray
Edited by member 13 Dec 2016 at 09:36
| Reason: Not specified
User
As regards long term RT side effects I'm over 10 years since and all bowel scans have been clear. Only issues are peeing frequency and ED, both helped by pills.
User
Martin
I didn't ask the surgeon much about the operation. He said it had gone straightforwardly. I was so tired I thought I'd wait to get home and then ask my named nurse to give me an update. She is the fount of all knowledge to me and has explained things well up until now. My MDT meets on a Wednesday, so I'll phone on Thursday to see if there is anything she can update me with.
All I do know is that there was no nerve sparing and a few lymph notes were removed to go to the lab.
Walter
User
Hi Martin
I understand your logic. See my profile. I was not offered brachy. This is very pertinent to myself as older brother has just been dX so he is looking for my input into his final decision. I was dry after 48 hrs so my surgeon who I only meet on the day of op. (I had assumed another was performing op) so must have performed bladder work extremely well. NHS fantastic for me. Even though NNS, ED is progressing in the right direction after 20 months without any current medication so positive. Nothing at all for 18 months so I just keep positive. Gordon
User
Thank you all so much for your input, it's been very helpful.
Lyn - your post prompted me to do more research on the surgeon via NHS choices. Compared to others, he appears to have a good track record: shorter hospital stays, low levels of complications and good experience with more aggressive tumours. I hadn't thought about the latter, but it appears that many surgeons stats are based on a high percentage of Gleason 3+3 cases. I suppose that's where they start out as newly qualified surgeons - makes perfect sense when I think about it. Thank you for the other info as well, it's certainly given me food for thought.
Ray - thanks for your thoughts on the age of my scan. I have had good care when it's been delivered, but communication and admin systems have been lacking throughout. So, although I know I need to establish trust in the pro's, I'll certainly be making sure they've realised the age of the scan, especially if they suggest the cancer is close to the capsule perimeter.
Walter - I hope all goes well from here, I'll be following your journey with great interest.
Johsan - Yes, I'm begining to understand how much age plays in the decision making process and why younger men tend to opt for RP. Thank you.
Gordon - I've just read your profile, thank you. The comment regarding aggressiveness rather than size of tumour is interesting and the reference to the free vs bound PSA ratio has prompted my next avenue of research - I've seen it mentioned elsewhere, but know nothing about the relevance. Could you (or anyone else) possibly elaborate a little?
My list of questions for next week is getting rather long and the input I've had here is certainly growing my confidence to tackle this... strength in knowledge and all that. Psychologically, I'm in a far better place than I was when I first got the news. I have a feeling I'll be hanging around here quite a bit for the foreseeable future.
Edited by member 14 Dec 2016 at 00:48
| Reason: Not specified
Martin ------------------- You never know how strong you really are until being strong is the only choice you have. |
User
Hi Metaxa, it isn't so much that newer surgeons start out on 3+3 grades or whatever. The difficulty is that now the surgeons have to publish their results to the NHS annually some will not operate on anything more than T1 and avoid complicated cases like the plague. An unintended (but foreseeable) consequence of politicians meddling in health care, I think :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Oh dear - another area of my life complicated by politics and reactive policies! Having worked in children's residential care and fostering for the last 12 years, I'm all too aware of the damage 'ivory tower' decisions can cause to essential services. I'm sure most are well meaning, but none ever seem to be preceded by an effective consultation process or are carefully thought through.
Thanks Lyn, you're clearly very knowledgeable in many aspects of the PCa arena. Having now read your profile, I can understand why; it must be difficult enough for someone to support just one person through this journey, let alone 3! Thanks for your input, it's greatly appreciated.
Martin ------------------- You never know how strong you really are until being strong is the only choice you have. |
User
Hi Martin
Basically I am interested and do research re. The timing of biopsy. As you have seen my profile. I don't know if free psa was analysed. My brother in Australia has just been dx. Gleason 7. Same as me. However he was given 18% as ratio. His PSA was 3.57 and he's 69. His detailed mpMRI gave PIRAD analysis. Thats why we chatted at length this year, he stayed with us for 6 weeks and he organised a biopsy on his return. I was extremely concerned he was going to be dx higher than 7. Thankfully he has been offered all options. He may go with RT. The forum is excellent in my opinion because you can get an informed higher global view in many ways. Depending on your time. Have a view through member profiles. Some folks in UK seem to have been treated quite appallingly. I can not fault my
experience with NHS. I've only had appendectomy when aged 36 and vasectomy at 38. So engaging 'system' at 59 when I felt fit and healthy is all a little surreal. Fortunately PSA base level and trend gave me a good chance. Gordon
User
Yes, the system as it is now reinforces the natural tendency of surgeons to want to 'cherry pick' not only the less advanced cases but those which are more likely to give good results, thereby enhancing their reputations. Conversely, it is possible that you might find a surgeon with ostensibly inferior results but where this may be due to him/her accepting a higher proportion of more difficult cases.
Barry |
User
Hi Martin
I have been diaognised with PCa in early october 2016. My PSA was at28, all of the 12 biopsy samples turned positive with 15 to 80%. gleason 8. Luckily bone scan turned _ve.MRI confirmed that the cancer is within the gland. Specialists adviced me to go with RT and HT as their first option since mine they consider as high risk mainly because all samples turned +ve and PSA IS 28. I have to do RT even if I do surgery which was the second option.. Initially I wanted to do surgery thinking that it will clear me of cancer for ever, but that is not the case for me.
I decided to go with RT +HT and On 12 dec I had my first injection of HT. We have IMRT here, but I am still searching whether there is a better option in europe or UK.
From what I learned so far, surgery looks good for you . However your specialist will b the best person to advice after analysing all the results. As the PCa progress very slow, the test results will not change much within 3 months. I think they will do the MRI scan once again before starting the treatment.
User
Ah Metaxa, we have a shared professional interest as well!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Thanks all, your responses are very much appreciated.
Lynn - us childcare pro's seem to pop up everywhere nowadays! :) What area of children's services do you work in? I'm in the private sector working as a placements manager - residential and fostering. It's been a busy few years!
Apologies for not returning sooner to acknowledge your posts. I realised a week or so ago that I had become overly obsessed with my PCa diagnosis and was spending too much time on the internet researching. This led to sleeping issues, fatigue and very low mood. I made the decision to concentrate on other areas of my life; work, family, hobbies, Christmas etc. to distract myself and regain some normality. It seems to have worked and I feel in a much better place now.
Progress:
I had my meeting on Tuesday to further discuss my diagnosis and treatment options and everything seems a lot clearer. Whilst a PCa diagnosis can never be a good thing, at this stage, the probability of a successful outcome is looking good. I know there's a chance this could change following treatment, but I'm taking this a day at a time and hanging on to the positives for now.
- Gleason score of 7 was confirmed to be 3+4.
- Although 8 of 13 cores were positive, percentages were low with several showing just 1mm of the 20mm core being positive and the highest being 7mm.
- Everything so far suggests the cancer is well contained within the prostate capsule with no indication of spread to the lymph nodes.
- Nerve sparing definitely possible for one nerve bundle and probable for the other, but the decision will be taken on the fly during surgery
I've decided on surgery as my treatment option and have been booked in for an RP (robotic) on 11th January. The surgeon was very reassuring and answered all my questions with comprehensive answers, drawing diagrams where necessary and going the extra mile to make sure I fully understood everything we discussed. I feel like I'm in good hands. He will have a 'fellow' with him in theatre, but reassured me he would be doing all the nerve sparing work and remaining very much hands on throughout the procedure.
For now, I'm looking forward to a relaxing Christmas weekend and then a full on crash diet and exercise regime to make sure I'm as match fit as possible.
Martin ------------------- You never know how strong you really are until being strong is the only choice you have. |