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Concerned about 14 day cancer referral

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User
Posted 19 Nov 2016 at 18:06

I have been told by my GP that my prostate is large for someone of my age (44) and that I have a hard irregular mass on one side. I have had urine test which was negative for an infection and PSA 2.8 which is only mildly elevated. GP said could be prostate cancer and I have been referred under the 14 day wait.

 

I am terrified and have good days and bad days. I am finding the wait to speak to someone unbearable. GP was very blunt and did not expect to be told could be cancer.

 

Having no ED problems but significant difficulty urinating at night and getting up frequently. Help please!

User
Posted 19 Nov 2016 at 22:34

PSA, particularly as a preliminary indicator for PCa is unreliable but it is of concern what your GP said about your DRE. However, we don't know how experienced he/she is in doing this test. It may be that it is just an enlarged Prostate but urology will do what is necessary to give an opinion and advise on this. Meanwhile, you don't have a confirmation of PCa at present, so you could be worrying over something you might not have. Do let us know how you get on, any further tests and diagnosis.

Barry
User
Posted 19 Nov 2016 at 23:38

Hi Stephen

I've just gone through the same process, so a little ahead of you. I had my appointment with the urologist within seven days of my discussion with doctor re: high PSA. From the urology meeting he ordered up the biopsy, bone scans and MRI, so it does move quickly once the system kicks into gear.

The first step for you will likely be a biopsy which will show any presence of PCa - I had the scans immediately because my high PSA (72) was a strong indicator for PCa. As mentioned above the urology team will walk you though it. I had two biopsies in 2004 and 2006 because of an irregularity on one side of the prostate, but the results came back as benign.

I know it's a big shock to the system but take the time to become knowledgeable - great resources on this site and the members are incredibly helpful. When you have your appointment, go prepared and ask questions, and best to take someone with you who can take notes or help you remember everything afterwards.

Stay positive.

Chris

User
Posted 20 Nov 2016 at 08:41

Hi Stephen. As the others have said too, this early stage wait is a kind of torture all of its own, but you're on the quick pathway for a reason and you'll soon know all the facts. My initial presentation in April this year was very similar to yours, with a fairly low PSA but an irregular DRE.

In my case they did the MRI first and then the biopsy, but the point is from that test onwards you're dealing with facts, and you can start to make a plan. I hope in your case that plan is simply  to keep an eye on things in future, no treatment being required. 

User
Posted 14 Dec 2016 at 22:50

It makes a huge difference if you are unlucky enough to have one of the rarer ones. Some are extremely aggressive and do not respond to hormone treatment, some are more susceptible to chemo than others, there are some that are more likely to be eradicated by RT than by surgery, some like to go to the lungs rather than lymph or bone the way the common ones do, some produce no PSA. So if a man starts on hormones but nothing works, the oncologist may retest to check that it isn't small cell, squamous or mucinous prostate cancer, for example.

You should know which type you have, it will be on the letter sent to your GP which you may also have received a copy of. The most common form is adenocarcinoma, accounting for 95% of all cases.

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

User
Posted 14 Dec 2016 at 23:08

If the pathology showed adenocarcinoma then that is what you have - they know what they are looking at in a Petrie dish.

There are cases where one turns into another - that is probably what happened to my father in law - but the behaviours and patterns are usually so unusual as to be obvious.

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

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User
Posted 19 Nov 2016 at 18:48

Hi Stephen,
Don't worry too much about the 14 day thing. I've been there 3 times, 2 for throat possible cancer : benign.
1 time for prostate cancer : positive.
I also had a shadow on my prostate on the MRI but that area was benign also.

You could have a benign condition, only one in four biopsies are positive.

If you have prostate cancer it may be slow growing and completely curable.
Read around this site , but dont concentrate on the worst cases, outcomes are usually better.

Good luck

User
Posted 19 Nov 2016 at 19:21

Hi Stephen

I know how you feel. I was referred under the 14 day wait, however I had a telephone call from the hospital and was seen within 5 days. So hopefully you will see a Urologist sooner than you think.

Best of luck.
Brian.

User
Posted 19 Nov 2016 at 19:26

Thanks Nigel for your words of support.

 

I have found the website useful. My main concern is the irregular mass, I tend to worry.

 

Kind regards

 

Stephen

User
Posted 19 Nov 2016 at 19:28

Hi Brian

 

Thanks for that. Having an appointment sooner would certainly help as does chatting to you guys in this forum.

 

Much appreciated.

 

Stephen

User
Posted 19 Nov 2016 at 22:34

PSA, particularly as a preliminary indicator for PCa is unreliable but it is of concern what your GP said about your DRE. However, we don't know how experienced he/she is in doing this test. It may be that it is just an enlarged Prostate but urology will do what is necessary to give an opinion and advise on this. Meanwhile, you don't have a confirmation of PCa at present, so you could be worrying over something you might not have. Do let us know how you get on, any further tests and diagnosis.

Barry
User
Posted 19 Nov 2016 at 23:38

Hi Stephen

I've just gone through the same process, so a little ahead of you. I had my appointment with the urologist within seven days of my discussion with doctor re: high PSA. From the urology meeting he ordered up the biopsy, bone scans and MRI, so it does move quickly once the system kicks into gear.

The first step for you will likely be a biopsy which will show any presence of PCa - I had the scans immediately because my high PSA (72) was a strong indicator for PCa. As mentioned above the urology team will walk you though it. I had two biopsies in 2004 and 2006 because of an irregularity on one side of the prostate, but the results came back as benign.

I know it's a big shock to the system but take the time to become knowledgeable - great resources on this site and the members are incredibly helpful. When you have your appointment, go prepared and ask questions, and best to take someone with you who can take notes or help you remember everything afterwards.

Stay positive.

Chris

User
Posted 20 Nov 2016 at 08:41

Hi Stephen. As the others have said too, this early stage wait is a kind of torture all of its own, but you're on the quick pathway for a reason and you'll soon know all the facts. My initial presentation in April this year was very similar to yours, with a fairly low PSA but an irregular DRE.

In my case they did the MRI first and then the biopsy, but the point is from that test onwards you're dealing with facts, and you can start to make a plan. I hope in your case that plan is simply  to keep an eye on things in future, no treatment being required. 

User
Posted 20 Nov 2016 at 09:41

Thank you all for you advice and comments. I feel less alone and will definitely take someone with me. I will also jot down the questions I need answers to ready for my appointment.

 

Thank you all so much for this encouragement. I will let you know how I get on.

 

All the best to you all and thanks again.

 

Stephen 

User
Posted 20 Nov 2016 at 13:18

Hi Stephen, sorry to see you here. I don't know which is worse; to be told there is a significant problem and then have to wait for all the tests to confirm it or to be told 'it's nothing' and then get a devastating diagnosis out of the blue. All you can do is equip yourself with information from the toolkit - knowledge is power and if you are diagnosed it will make all the codes and acronyms and treatment options less of a mystery.

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

User
Posted 20 Nov 2016 at 13:52

Hi Lyn

I have found the site really useful and also all the replies to my post.

Many thanks

Stephen

User
Posted 21 Nov 2016 at 18:10

Hi All

I had a call today from the hospital. They cannot see me until the 14th day (1 December) so feeling a little anxious at the moment.

It is tough waiting to know what diagnosis is going to be.

Stephen

User
Posted 21 Nov 2016 at 19:37

Unfortunately, there are frequently delays in waiting to go through all tests before a diagnosis is arrived at which for the patient can be a very anxious time. However, PCa is generally a slowly developing disease and where PCa is diagnosed, a few weeks delay before diagnosis and treatment usually makes little difference. So much so that in some cases it is thought best not to have treatment but to just monitor the patient, which is termed Active Surveillance (AS).

Barry
User
Posted 21 Nov 2016 at 19:46

Thanks Barry that is reassuring and somewhat comforting.

Regards

Stephen

User
Posted 25 Nov 2016 at 11:39

Maybe a bit too late, but speak to the nurses on here, they are very helpful.

User
Posted 26 Nov 2016 at 10:21
If I understand things correctly, after a two week cancer referral, the hospital has 62 days to diagnose and start treatment. All my scans and biopsies were fairly quick and they told me they will fulfil their target by 13 December. So, I suppose as long as they stick yo the 62 day target, no harm will come of it, except the anxiety of waiting.

I'm 46 so similar to you Stephen age wise. My PSA was 7.8 though.

Walter

User
Posted 26 Nov 2016 at 11:17

It is a bit more complicated than that but the 62 day target is from when the hospital receives the referral and must be worked alongside a separate target of treatment starting within 31 days of the decision to treat. So if someone is diagnosed but then asks for a second opinion or is undecided between brachy and surgery, the 62 day count continues but the 31 day count doesn't start. For a man that is deciding which treatment to choose, or seeking second opinions, the hospital can log them as on active surveillance which is a treatment and therefore the target has been met.

This training slideshow for oncology staff / administrators at Bristol is really good :-) http://www.ncin.org.uk/view?rid=586

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

User
Posted 14 Dec 2016 at 18:44

Hi All

Sorry it has been so long since my last post. I am still waiting for a diagnosis. Had an appointment with the consultant on 1 December and an MRI scan yesterday.

I have a follow up appointment on 22 December so hopefully will have some answers. Have been put on Tamsulosin at night. This has provided some relief but nothing significant yet. I understand it can take up to 3 weeks to work fully and hope it will at least help reduce the amount of times I need to get up in the night for a pee.

Thank you to all on the forum for your support.

Stephen

User
Posted 14 Dec 2016 at 19:13

If you haven't yet had a biopsy you won't get a diagnosis on the 22nd either - all they would be able to say is that the MRI indicates cancer or looks clear or whatever. Or did they do the biopsy when you went on the 1st?

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

User
Posted 14 Dec 2016 at 19:37
Stephen

Do you know if you had a mpMRI - multi parametric MRI? And at your consultation were you given the contact details of a named Uro-oncology specialist nurse?

I suppose it depends on each hospital's policy, but my named nurse actually gave me my MRI results - PIRAD score of 5, meaning that clinically significant cancer was highly likely to be found upon biopsy. Initial TNM score of T3aN1Mx. I think, but I could be wrong, that anything less than a mpMRI can't give such a clear indication.

My GP told me the results of my biopsy when that happened.

I received both sets of results over the phone and some people were surprised that the hospital and GP were so willing to talk on the phone. However, it would have driven me insane waiting. When I went to see my urologist, i already knew what I was going to be told.

Walter

User
Posted 14 Dec 2016 at 20:41

Hi both

Not sure what type of MRI, it was comprehensive though and it took about 45 minutes. No I did not have a biopsy. The consultant did not want to rush into this until the scan. I have other health issues and my medication makes the risk of complications much more likely - the consultants view not mine.

I told him that I was prepared to take the risk but he wanted to wait for the MRI first. To be honest he was not very nice at all. For the first 10 minutes of the consultation he did not make eye contact with me and it was only when I had the flow test that he realised I had significant symptoms. He seemed surprised at how poor my flow rate was. This is why he prescribed the Tamsulosin.

I realise that the scan is not diagnostic however, I understand that it can give a good indication about what is happening and if there is cancer, the likelihood it has spread.

I do not have a named nurse however, it was made clear that I would only be given the results by the consultant on 22nd. Unfortunately, our local hospital has not been rated well and the alternative NHS hospital is even worse. I am hoping that I can at least get an idea about what is happening and if necessary get a second opinion if I am not happy. I am hoping that when I saw the consultant on the 1st that he was just having a bad day and the next appointment will be better.

Feel anxious about it but I am starting to feel less so than before. I have had time to reflect and prepare myself. The information on the website has been really useful.

Thanks

Stephen

User
Posted 14 Dec 2016 at 21:29
Stephen

Have you phoned the specialist nurses from PCUK? They're brilliant at explaining things and would be able to help you identify questions to ask the consultant. I've spoken to them at each stage of my journey and they've been really helpful.

I had my MRI first and the results then show what sort of biopsy you should have. It helps them target the biopsy correctly. But my consultant who did the biopsy did tell me that he fully expected the biopsy to come back positive based on what he had seen on the MRI.

Walter

User
Posted 14 Dec 2016 at 21:33

Until recently the biopsy was always done first and the scan second - it is quite a new concept for some hospitals to offer scan first so although yours may be low-rated they are ahead of many more highly rated ones!!! Usually though, the purpose of the scan first is to help the urologist see where best to take the biopsy cores from - only a biopsy can tell you for definite that it is cancer, what grade and which type (there are at least 27 different kinds of PCa)

You are correct that the scan will usually show grey areas and how near to the edge they are (or even whether they have escaped) but a normal scan cannot tell the difference between infection, inflammation and cancer. To complicate matters there are some rare PCa types that don't show on an MRI - my husband's was completely clear but the cancer was actually throughout the gland and into his bladder. Fortunately he had the biopsy first so the consultant knew the scan results were questionable. If Mr Cheerful tells you on the 22nd that you are fine, you might want to think about whether you would feel more reassured by requesting a biopsy anyway?

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

User
Posted 14 Dec 2016 at 21:38
Lyn

I didn't realise there were different types of prostate cancer? Do they tell you which type you've got? And does it really make a difference if you know which type you've got?

Walter

User
Posted 14 Dec 2016 at 22:50

It makes a huge difference if you are unlucky enough to have one of the rarer ones. Some are extremely aggressive and do not respond to hormone treatment, some are more susceptible to chemo than others, there are some that are more likely to be eradicated by RT than by surgery, some like to go to the lungs rather than lymph or bone the way the common ones do, some produce no PSA. So if a man starts on hormones but nothing works, the oncologist may retest to check that it isn't small cell, squamous or mucinous prostate cancer, for example.

You should know which type you have, it will be on the letter sent to your GP which you may also have received a copy of. The most common form is adenocarcinoma, accounting for 95% of all cases.

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

User
Posted 14 Dec 2016 at 22:57
Lyn

Mine is adenocarcinoma.

Can they tell this for certain from the scan and biopsy? What am I really asking is could they come back at some stage and say we got it wrong and you've actually got such and such a type?

Walter

User
Posted 14 Dec 2016 at 23:08

If the pathology showed adenocarcinoma then that is what you have - they know what they are looking at in a Petrie dish.

There are cases where one turns into another - that is probably what happened to my father in law - but the behaviours and patterns are usually so unusual as to be obvious.

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

User
Posted 18 Dec 2016 at 12:36

Sorry had a horrendous cold!!!

I will certainly ask for a biopsy I may even consider going privately although I think the cost is quite high.

Interestingly following my cold my asthma has flared up and I am on oral steroids. These seem to improve my flow and the need to get up in the night within 24 hours of taking them. I will mention this to the consultant on Thursday. Not that I wish to take anymore steroids than I need to!

Stephen

User
Posted 18 Dec 2016 at 13:40

I suppose the problem is that we are telling you all this stuff but we have no idea of your other health issues or why the consultant felt a biopsy might be too risky for you. The specialists have all your medical details and will advise you better than we ever could.

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

User
Posted 19 Dec 2016 at 08:47

Hi Stephen

The other consideration is switching consultants. You could change the appointment and request another consultant, but do some homework and find out who is available and what their experience is. To date I have seen three, not through choice, and two have been excellent. The third I saw last week was a locum and it was simply a waste of time, and he referred me again to my regular consultant.

Don't rush to go private, as you may end up with the same consultant! More importantly, as referenced elsewhere on this site, you may not have access to the full range of post-op care through the NHS - if that is indeed what is required post-diagnosis.

Stay positive.

Chris

User
Posted 19 Dec 2016 at 13:52

Hi stephen,

I think you should trust you doctors to give you the right direction as i did with mine from my first blood test in April this year to my Brachytherapy in September, I am 70,(I you read my blog you will see i had no symptoms and was at the doctors for a different reason) but very please with the speed of their diagnosis.

I have only been on here for a few days and have already had loads of help and encouragement from members,just stick with it my friend and take advice from the professionals.

Regards John. 

User
Posted 23 Dec 2016 at 05:08

Hi All

Have had a rollercoaster of a week this week. Saw the consultant yesterday after looking for the results of my biopsy it took him some time to realise I hadn't had one so that did not fill me with much hope!

Whilst he was faffing around I saw my MRI scan result next to my file. Whilst I know it is not a definitive diagnostic tool the results showed significant prostate enlargement but no evidence of cancer. It read that the prostate capsule was fully in tact and that the seminal vessels are normal. No evidence of any pelvic bone abnormality or spread. I had to read it several times before it sank in!

The consultant wouldn't confirm no cancer but he was reassuring that no evidence of cancer was a very good result and, has discharged me back to my GP for monitoring. At this stage I am happy with this and should I need to be referred again, I will be exercising my right to see another consultant at the same hospital who seems to be well respected in the UK. I wish I had seen him in the first place. Sadly I didn't feel that he cared about me as his patient and I would not be comfortable seeing him again.

At least now I am more informed and should I notice any changes or have concerns I will not hesitate to go back to my GP immediately.

I may consider having a private consultation for a second opinion but at this stage I am going to wait and see first. I have found this forum and the website so helpful and it has helped me to understand and equip me to deal with this head on! Thank you to everyone for your support and I wish you all the best of luck with your treatments and recovery.

I will keeping posting comments and hope that I can help other people, as you have all helped me. Thank you so much.

Kindest regards

Stephen

User
Posted 23 Dec 2016 at 16:42

a great result Stephen . Enjoy your Christmas and Best wishes to all on the forum. Elajai.

 
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