I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Was diagnosed today

User
Posted 20 Sep 2018 at 15:07

Good day all


I am a 58-year old who was diagnosed with prostate cancer this morning, following a prostate biopsy + cystoscopy last week.


I had initially had been sent to have a PSA test, and got the result of 7,9. This was followed by a digital rectal examination and an ultrasound check (in the doctor's room). The DRE and ultrasounds showed no bad signs, but the urologist was still concerned about the high PSA so sent me for the biopsy.


The biopsy results showed that 4 of the 14 tissue samples taken had relatively high Gleason scores. 3 samples had a Gleason score of 6, and 1 sample had 8 (4+4). "Total linear length" is 5.7mm (Not sure what this means? Anyone who knows, please explain?).


I will be having a bone scan next week, followed by a MRI in 7 weeks time to check whether the cancer has spread.


I know that I will find out the results next week after the bone scan, but I am concerned about how likely it is that the cancer has spread to other parts. My doctor did say that it seems "unlikely" given my current PSA level of 7.9 but I can't stop my concerns.


The symptoms I have been experiencing include feeling that bladder has not been fully emptied; frequent urination; and although I'm not sure if these symptoms would actually be related to the prostate - shortness of breath; pain in knees, shoulders and neck area.


Your thoughts and comments would be much appreciated, thanks!


 

User
Posted 21 Sep 2018 at 17:55

I can’t really offer much advice re treatment timetables as I had mine privately. I do however know that the publicity generated via Stephen Fry etc has put great pressure on the NHS as many more men are getting PSA done and therefore needing scans/biopsies etc. From the perspective of looking forward I was diagnosed in May 2017, PSA 129, Gleason 9 (5+4) with widespread through my bones. I’ve bern on hormone treatment from day 1 and hate the total emasculation caused by it. I swerved chemo as my medical insurers funded Abiraterone. I am effectively terminal but I’m still here 16 months on, PSA hasn’t registered for 13 months and I still run 3 times a week (although it’s so much tougher and slower due to the treatment) as well as doing a fitness session each week. I live in hope of new drugs that may prolong my life and the magic bullet of a cure. Never going to give up hope. I was however told that the average prognosis for someone in my condition and on Abiraterone was 6-7 years so the reality is I’ve got 5-6 from here. However, I’ve never been average before! Good luck with everything from here. It’s a crap disease and we have to make sure we live each day as if it’s our last 

User
Posted 21 Sep 2018 at 17:22

I had a PSA of 7 and a bit. My cancer had broken through the prostate. 


So it is worth doing all the tests necessary. I sincerely hope it is contained.


Ian

User
Posted 21 Sep 2018 at 16:14
I had my PSA test on 2nd May this year, and started treatment on 17th August, so three and a half months. Don't take that as typical, though - my situation was complicated by the fact that the prostate MRI scans showed up two additional unrelated conditions which necessitated additional tests. Two months from start to finish would be more typical. The NHS guideline (which is met for the large majority of patients) is 63 days.

Chris
Show Most Thanked Posts
User
Posted 20 Sep 2018 at 16:05

Hi KEY7,   My first thought is that waiting 7 weeks for an MRI is very long and did you mis-hear.  My MRI was 4 days after the biopsy result, same as the bone scan.   I think I'd query that date, they were amazing at fitting me in at 8am for the MRI and during lunch for the bone scan when I asked if they could be the same day.   They're theoretically targeted to give you a full diagnosis in 30 days from referral by the GP.


I can only guess that one needle had 5.7mm length of bad cells in it.  Mine was given as 5% percent of cells and it was only 1 needle.  Perhaps someone else will advise better.  I was also told that it's common to blame every pain on the condition when it usually isn't related.  I had a very sore hip that came on during diagnosis which can be a bad symptom, but so far so good.  All the best.


Regards
Peter

User
Posted 20 Sep 2018 at 16:17

Hi there, so sorry to read you are diagnosed with Prostate Cancer.


Diagnosed just over a month ago- Gleason 9 - 8 out of 12 show cancer on the biopsy.


Am on hormone therapy - implant Zoladex implant & diffundox XL taken once a day. so can empathise how you are feeling at the news.


I'm a newie to this but something I can recommend is to realise that you are very unlikely to (as my Oncology Nurse pointed out on diagnosis) to fall off the perch very soon.


At our age you can expect aches and pains anywhere but until the body scan results come back then you simply (like me) have to assume that whatever is there has been for a while and all that has happened is we now know about - but in reality nothing physically is different.


My body scan showed a 'hotspot' on a rib so they sent me for a CT scan -yesterday - and the results will be conveyed on my next appointment with the Oncologist in early October. Apart from flushes and sweats from the hormones I really feel little different than prior to receiving the news of my cancer - tired but keeping active and with breaks doing what I normally do but at a slower pace - though walking a lot more to try to lose weight.


Know that there will be many others with longer term experience than I on this thread so won't try to offer an opinion on this or that but to simply say take things easy and gain as much as you can from this site and be wary of some of the wilder stories out there on other platforms. Cheers

User
Posted 20 Sep 2018 at 17:26

@Peter, thanks for your thoughts. I also thought this waiting period was unnecessarily long, especially since I recovered very fast after my biopsy but they insisted that I need to wait at least 6 weeks before going in for an MRI following a biopsy. I think I should ask again.


@Old Patch, I am also sorry to hear about your diagnosis. May I ask how your hormone therapy is going? I do also hope that the results for your CT scans bring you good news...

User
Posted 20 Sep 2018 at 18:02

Hello Key7, 


I don't know if my comments will be of any help - I felt that it was very personal to me and everyone has a slightly different situation.  And this is my first time in any on line community, so here goes.


I was diagnosed after my biopsy when I was 56 (I am now 60).  The biopsy was in the February.  I then had to wait about 6 weeks for my MRI  and I  finally had my prostatectomy in July.  I was fortunate the MRI showed that the cancer had not spread and so for me a prostatectomy was a practical solution.   My wife was concerned about the time things were taking, and when I finally had the post operative biopsy results the Gleason score had worsened considerably, but as my subsequent PSA tests have shown, it has not spread and the operation was a complete success.  I am now on annual PSA tests, and that's all.  So I think I was very lucky that the operation was just in time. So I would certainly ask for some reassurance about the MRI date. 


Its probably worth checking the full cancer pathway targets (as Peter has pointed out a 30 day target). That way you will know where  you are on it.  And I suspect some NHS areas have better cancer target performance than others.  


I hope this has helped.


Best wishes

User
Posted 20 Sep 2018 at 19:44
Key, as long as your prostate cancer is the “common” type, adenocarcinoma, with a PSA of 8 it’s extremely unlikely to have spread outside the prostate, but they need to do all the checks just to be on the safe side, and unfortunately that often does take a couple of months before all the facts are in. Waiting and not knowing is (for most people) the toughest part of the process. When you get your final diagnosis you’ll probably feel a lot better about it. You probably won’t believe it at the moment, but having prostate cancer quickly becomes “the new normal” and you can get on with enjoying life again. With a PSA as low as yours, the odds are VERY high indeed that it’s been caught early and should be completely treatable.

Chris
User
Posted 21 Sep 2018 at 16:08

@Peter, just an update with the waiting period for my MRI to take place. I've been doing some research and read that at least 4 weeks is recommended to attain more accurate MRI results since the biopsy would have caused some damage. Not sure how true this is but that's all I could find.


@Sea King, any comments/thoughts are greatly appreciated! I see that your MRI also took place 6 weeks after the biopsy. Did you get an explanation to why it takes such a long time to do the MRI after the biopsy? I'm happy for you that your surgery was a success. However I'm curious to how they explained the "worsened Gleason score" following the prostatectomy? 


@ Cheshire Chris, thanks for your words of encouragement. They mean a great deal to me right now. May I ask how long it took for you from the initial PSA test to your treatment?

User
Posted 21 Sep 2018 at 16:14
I had my PSA test on 2nd May this year, and started treatment on 17th August, so three and a half months. Don't take that as typical, though - my situation was complicated by the fact that the prostate MRI scans showed up two additional unrelated conditions which necessitated additional tests. Two months from start to finish would be more typical. The NHS guideline (which is met for the large majority of patients) is 63 days.

Chris
User
Posted 21 Sep 2018 at 16:38

Hi


Sorry to hear about your diagnosis and I agree with Chris that with a PSA of 8 it is extremely unlikely to have spread outside the Prostate. My own diagnosis of PSA 9 and Gleason scores 3+4 or 7 on both sides was shown as localised and contained. I could have had surgery 5 or 6 weeks later but went on active surveillance before deciding with my family that it felt like a ticking time bomb and I wanted it dealt with. I had the Robotic surgery 10 days ago and Catheter removed after 7 days and so far doing okay wearing pads/Underwear with only fairy minimal leakage. I am 57 and did Pelvic floor exercises for 2 months before my OP


It sounds like it has been caught early and your prognosis should hopefully be a good one. Like you my only symptoms were going to the toilet a bit more at night and sometimes feeling my bladder was not fully emptying and I also had an enlarged prostate 


Wishing all the best with the Bone scan . I know I was relieved when I got the news and I hope you also have some positive news


Best Wishes


Paul 

User
Posted 21 Sep 2018 at 17:22

I had a PSA of 7 and a bit. My cancer had broken through the prostate. 


So it is worth doing all the tests necessary. I sincerely hope it is contained.


Ian

User
Posted 21 Sep 2018 at 17:55

I can’t really offer much advice re treatment timetables as I had mine privately. I do however know that the publicity generated via Stephen Fry etc has put great pressure on the NHS as many more men are getting PSA done and therefore needing scans/biopsies etc. From the perspective of looking forward I was diagnosed in May 2017, PSA 129, Gleason 9 (5+4) with widespread through my bones. I’ve bern on hormone treatment from day 1 and hate the total emasculation caused by it. I swerved chemo as my medical insurers funded Abiraterone. I am effectively terminal but I’m still here 16 months on, PSA hasn’t registered for 13 months and I still run 3 times a week (although it’s so much tougher and slower due to the treatment) as well as doing a fitness session each week. I live in hope of new drugs that may prolong my life and the magic bullet of a cure. Never going to give up hope. I was however told that the average prognosis for someone in my condition and on Abiraterone was 6-7 years so the reality is I’ve got 5-6 from here. However, I’ve never been average before! Good luck with everything from here. It’s a crap disease and we have to make sure we live each day as if it’s our last 

User
Posted 21 Sep 2018 at 18:50

Hello Key7


To answer you questions re MRI: I wasn’t aware of any particular reason for the timing of my MRI. I was aware of the cancer pathway timings and the MRI seemed about right. What wasnt right was the time it then took to have the operation.


I was told of the post operative pathology of the prostate. There was  no reason given as to why it had changed, other than the fact that it was evidence that the cancer was quite aggressive. That’s why I think we should all be very alert to any delays in the diagnosis and treatment of prostate cancer.


i hope that’s been helpful and I hope that you’re getting the support you need. My experience  of support from my nhs hospital  cancer nurses was very good indeed.


Best wishes.

User
Posted 22 Sep 2018 at 18:15

Thanks everyone for your sincere replies and comments. My bone scan is taking place next Tuesday, and this waiting feels excruciating at the moment. While I am heartened by those comments saying that it seems highly unlikely that the cancer would have spread outside prostate given my readings, I have also read a few instances where cancer had spread with a low PSA level like Ido4's case so I am rather anxious. I guess all I can do is wait for the results.


I am actually based in South Africa so I don't think I can actually compare the timelines to you folks' NHS guideline-suggested timeline.


@Gowerboy, how has your healing been since the robotic surgery? My doctor had also strongly recommended the robotic surgery to me, which will most likely take place towards the end of November after getting my bone scan and MRI done.


I wish you folks all the best as well and let's make it through.

User
Posted 25 Sep 2018 at 19:20

Hi KEY7


The start of the journey is the worse while your waiting for results. I had a PSA 7.6 told not to worry then ended up with a gleason score of 7 with locally advanced cancer. Decided on the operation had my prostate remove. When I went for my first check up I was told the cancer had been contained and my PSA was undetectable. My point here is it was not as bad as my pre test results were indicating. So try not to worry about what might happen but just deal with each issue as it arises and I hope all goes well in the future.

User
Posted 25 Sep 2018 at 21:46

Hi eddyb1956, thanks for your kind words and encouragement. I am going for my bone scan tomorrow and sincerely hope that nothing had been spread to the bones. Honestly this waiting part is holding me back from getting on with my life...


I am glad to hear that your PSA is all good now after the removal. May I ask which surgery you had? Was it robotic?

User
Posted 25 Sep 2018 at 21:54

Hi Key7,


Your doctors have done a good job and I believe the cancer has been picked up at an early stage, probably treatable with radical surgery (although you have to wait till your bone scan and MRI). I understand your anxiety. On a reassuring note - only 2.3% of the bone scans are positive when the PSA in <10! So, don't worry for now. 


With regards to 6 weeks wait for your MRI - this is practiced since the prostate MRI can have artifacts and false findings due to the bleeding occur during the biopsy procedure. So we need to wait for 4-8 weeks for these changes to settle and 6 weeks is fairly enough to get a reliable report. Generally prostate cancer is a slow growing cancer, therefore this 6 week wait won't have any adverse effect on your cancer or its management. 


Hope this information helps you. 

User
Posted 25 Sep 2018 at 22:09

Hi Rickaz, I appreciate your valuable advice and information (especially regarding how only 2.3% of the bone scans turn out to be positive with PSA <10!). Thanks also for reassuring my timeline or the MRI scan. I suppose it will be the longest 6 weeks of my life and I'll have to deal with it!


I will be getting the results for the scan on Thursday, and will update this post.

User
Posted 05 Oct 2018 at 13:31
HI Key 7

My Robotic surgery was done almost 4 weeks ago now and the water works have been better than expected to be honest. I am using two Tena Pads during the day and a light one at night. I have been passing urine quite often around every 1.5 to 2 hours at night which I flagged up to my Macmillan Nurse and then last week noticed some blood when going peeing and she contacted my specialist who said to stop the blood thinning injections.(I was given them to take for 4 weeks but my Nurse said most take them for two weeks and as I am active there is no need to continue them and they could be causing the bleeding) It got a bit worse so as advised I went to my GP on Tuesday and she did a Urine Test and said she could see some blood but it was not indicating a definite infection. She sent it off for testing and rang me yesterday saying the Lab confirmed it was a very common E COLI UTI infection and gave me a weeks course of antibiotics. I did a bit of research and apparently one of the causes of this UTI is having a catheter in. I am not feeling ill or weak just going to the toilet a bit more than usual and I guess bladder infections are quite common after this type of surgery. Overall so far I am pleased with progress.

Hope all goes well with your scan results today

Best wishes

Paul
User
Posted 19 Oct 2018 at 07:52

Hi key 7


sorry about the late reply, I had the robotic prostatectomy and recovered well, I have the usual side affects which I am coping with,and now after 4 months I am back to the gym training with weights etc. The only downside at the moment is my sex life but I live in hope that this will improve but its not the end of the world.,

User
Posted 19 Oct 2018 at 10:12
Always get the MRI before the biopsy! Saves the waiting issue and potentially gives a target for the biopsy!

With a diagnosed g4+4 you don't want to be waiting too long! I would be chasing my urologist for suggested treatment options given you have a cancer diagnosis already.
User
Posted 19 Oct 2018 at 15:43
Fine if the country you live in offers that option and there is an NHS to pay for it :-/

I think Key said his RP will be in November.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 11 Jan 2019 at 15:23

Hello Peter, I am sorry to hear your news and fully understand the wait for MRI must be bothering you. My husband is about to have his prostate removed so I can tell you our surgeon told us that the biopsy causes swelling in the prostate and needs time to heal before more imaging, as tissue is swollen and they can't get an accurate picture, also we had to wait for the op because the holes from the biopsy have to heal up so no cancerous cells can "escape". They don't like to mess too much straight after a biopsy. My husband had 20 cores taken so I imagine the prostate was quite damaged by all that. I would hassle them for an earlier date for your MRI though (they usually work 12 hour days) or tell them you could travel to another scanner if that's possible for you. Sending good thoughts to you for this journey.

User
Posted 11 Jan 2019 at 17:13
Hoosier, Key was due to have his RP last November but hasn’t actually logged on to the forum since October so we may never know whether his bone scan was okay or the op was cancelled.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jan 2019 at 14:01

Hi all,


Sorry I've been so scarce lately! Like I had been advised, I eventually learnt to accept the diagnosis and got busy with my life. 


Just to give you an update, my bone scan that took place in September showed clear results with no metastasis. MRI followed in November (due to having to wait for my biopsy wounds to heal), which was another long excruciating wait. But I have been very lucky and the results yet again showed no metastasis to lymph nodes.


My doctor was able to conclude my stage as T2M0N0.


Following the MRI, my previously scheduled DV robotic surgery took place towards the end of November. It went well, and I was discharged from hospital the very next day. I felt pretty nauseous for the first few days and some pain in surgery wounds, but overall recovery was quick. I also still have some incontinence issues but it's surely getting better.


I went to see my doctor for a follow-up appointment today (5 weeks after the surgery), and the new PSA readings showed undetectable PSA! The doctor assured me that I have nothing to worry about and I will be seeing him again in 3 months time to check the PSA again. I know that I still need to watch and be careful with my diet, etc. 


I wanted to thank you all for your time,valuable advice, support and kind words. You really all helped me get through the difficult times when I was first diagnosed! Although I went through no treatments other than the surgery, I'm hoping that I will now be able to give some kind of help to others on this forum...

User
Posted 15 Jan 2019 at 16:12
Brilliant news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 15 Jan 2019 at 18:15
Always good to here good news KEY7.

All the best with the incontinence and ongoing recovery.

Cheers
Bill
User
Posted 15 Jan 2019 at 23:30

Great news. 

 
Forum Jump  
©2019 Prostate Cancer UK