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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

 
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