Just Diagnosed and looking to talk to someone

User

Posted 18 Jun 2021 at 11:39

My first post.

I have been diagnosed with Prostate Cancer and it has sent me in to panic mode.

I have regular medicals with work and at PSA 3.3 I was advised to get it checked out. My MRI showed an abnormality and the biopsy showed a small amount of Gleason 6 (less than 1mm) recommendation was active review but as MRI was concerning a further more detailed biopsy was undertaken this showing up more small tumours but all Gleason 6 however it looks like they are at the edge of prostate and it makes sense to get prostate to remove risk waiting on date and I am over thinking the situation would anyone be able to talk about their experience or if someone is waiting on operation perhaps we could support each other?

User

Posted 24 Jun 2021 at 21:03

I hope my experience will be of some help.

I knew I had problems and it came as no surprise that I had prostate cancer. It developed quite quickly and after 4 months the doc referred me.I knew it was serious by the speed at which I zipped from scans to biopsy to oncology.I was a level 9 , the only time I regretted getting top marks in a test. I took a couple of days to digest the news . My attitude was Doris Days' - whatever will be will be. However I'd dodged death several times -twice cycling , twice climbing and once caving so maybe I was like a cat. The only upsetting bit was telling my wife.

The care I receive from Preston Royal is superb. Making the decision wasn't too hard . I decided on RP as opposed to 3 years radio.I also joined a trial of a new drug . Why not ? Better to be useful.

The op was a success ,great surgeon but there is still some cancer in there so I may need radio anyway. My big worry after the op was incontinence, the info says 6weeks, 3 months, a year or never to regain control. For the first couple of days after the catheter came out I peed myself , that was the only time I cried - tears of humiliation and self pity . I dreaded the thought that it would not improve. Now 3 months on I use 1 pad a day and am down to 3-9mm leakage a day( I weigh the pads) .The oncologist and my nurse are super , very positive and tell me how well I'm looking ! My PSA is way down and the only side effects from the hormone treatment have been hot flushes and dry skin.

Sex . I told the surgeon I wasn't bothered about erections. The hormones stop me thinking about sex. Its great , the amount of time I wasted thinking about it in the past. I'm back on my bike and going for day walks.

If people ask how I am I tell them I'm very well. If they ask about the cancer I tell them. I tell them I'm not fighting it , I'm living with it , nothing I can do about it , thats for the docs and nurses. Idon't worry about the cancer, I worry a lot about Boris Johnson.

I put one foot in front of the other and relish every day. I ride my bike , plan cycle tours for September , go for walks and dig my allotment.

Most of all I thank the docs and nurses in the good old NHS. There is no better place to be ill.

I hope this helps.

User

Posted 18 Jun 2021 at 22:06

So sorry to hear of your diagnosis.

I'm just recovering from having a robotic radical prostatectomy.

My journey began in November 2019, had prostate checked after reading a men's health post, and had blood test, (psa result was 5.6 if I remember rightly) had a repeat blood test (increased to 5.6 or 5.8) was sent for mri which showed an area of concern on 1 side of prostate, had biopsy which confirmed cancer 3+4.

Was put in active surveillance, but I felt it needed to be removed, so spoke to nurses who booked me back in to see consultant.

Talked through the possible side effects, erectile disfunction and urinary incontinence was the 2 that worried me the most at my age (41 at that time).

Booked in for surgery, and all went smoothly, hated the feeling of the catheter, and psychologically effected me as I felt unclean and very uncomfortable, but it was all psychological, it didn't hurt, you can't really feel it, it's just weird.

Had a semi hard on after 2 days, quite painful as the catheter was still in situ. (lol) but was over the moon as i had been told it takes months or years to get any movement down there.

The scars have healed really well, and can hardly notice them. (3 small incisions, 1 about an inch long and 1 about 2 or 3 inches long)

After 3 or 4 weeks, I'd changed from the to well type pads and was on a small thin shield type pad that pops into the front of your pants, can't notice it, even when wet.

I use 1 pad a day.

Had psa test and it's untraceable.

So far, I'm over the moon with the way things have progressed.

They sent the prostate off for testing after it's removal and it turned out it was quite an aggressive form of PC, so a good job I didn't stay on active surveillance, but everyone is different, a friend of mine has had it nearly 20 years and is still on active surveillance and is still a 3 + 3.

So consider your options carefully, and talk it over with your family and loved ones.

If you need to talk, just ask.

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User

Posted 18 Jun 2021 at 20:53

I am sorry to hear that you have joined this club and assume that when you say Gleason 6 you mean 3 + 3 = 6, which is category 1. That is the lowest grading of prostate cancer and is given when the cancer is unlikely to grow or will only grow very slowly. Your PSA level is also relatively low, though this was obviously deemed high enough at your age (55) for you to have a MRI scan and then a biopsy. It is unusual to have one biopsy after another and wonder whether you can clarify that this is what actually happened. I assume that your consultant has suggested that your prostate is removed, perhaps because the lesions are on the edge of your prostate? It is unusual for this to be considered at such an early stage of diagnosis and wonder what other options were discussed with you.

My own prostate cancer journey started in April and I have, for the time being, decided to be on Active Surveillance rather than undergo any treatments. All of which have side effects of one sort or another. My message board detailing my journey can be found by clicking on my name.

Others on here who have undergone treatment will, I am sure, comment in due course

User

Posted 18 Jun 2021 at 22:04

Actually it isn't unusual to have two biopsies, particularly when the results of the first biopsy don't match what was seen on the MRI.

I hope that you will ask to see an oncologist before making a final decision about treatment. There are guaranteed side effects of any prostate cancer treatment and then there are also potential side effects, some of which can have a serious impact on quality of life. With a number of G6 clusters near the edge, you would probably not be suitable for active surveillance but it is definitely worth exploring brachytherapy which is as successful as surgery but usually with fewer side effects.

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

User

Posted 18 Jun 2021 at 22:06

So sorry to hear of your diagnosis.

I'm just recovering from having a robotic radical prostatectomy.

Was put in active surveillance, but I felt it needed to be removed, so spoke to nurses who booked me back in to see consultant.

Talked through the possible side effects, erectile disfunction and urinary incontinence was the 2 that worried me the most at my age (41 at that time).

Had a semi hard on after 2 days, quite painful as the catheter was still in situ. (lol) but was over the moon as i had been told it takes months or years to get any movement down there.

The scars have healed really well, and can hardly notice them. (3 small incisions, 1 about an inch long and 1 about 2 or 3 inches long)

After 3 or 4 weeks, I'd changed from the to well type pads and was on a small thin shield type pad that pops into the front of your pants, can't notice it, even when wet.

I use 1 pad a day.

Had psa test and it's untraceable.

So far, I'm over the moon with the way things have progressed.

So consider your options carefully, and talk it over with your family and loved ones.

If you need to talk, just ask.

User

Posted 19 Jun 2021 at 16:10

Initial panic isn't a surprise. It's like the grieving process where you start off shocked, depressed and perhaps asking why me, and gradually your brain processes it and you get a new normal, not one you'd ask for perhaps but mostly fine for most people.

Does your hospital give you a Macmillan Nurse. They're very good and give you a number to call. You can call them anyway or the Prostate Cancer nurse on here.

My lesion was near the edge and diagnosed Gleason 4+3. Being near the edge and the number '4' lit the warning lights for me and I wanted it out asap. The surgeon said it was at the apex which is an outer section away from the bladder. That seemed less risk than one near the bladder. I don't know where yours are located although you said they're small which might also be a lower risk factor.

I've done a website diary of my treatment on a link on my profile if it's of any use as it gives the full 9 yards with a few extras, or very nearly.

People write all sorts on here about their most personal concerns so feel free.

All the best, Peter

User

Posted 24 Jun 2021 at 21:03

I hope my experience will be of some help.

The care I receive from Preston Royal is superb. Making the decision wasn't too hard . I decided on RP as opposed to 3 years radio.I also joined a trial of a new drug . Why not ? Better to be useful.

I put one foot in front of the other and relish every day. I ride my bike , plan cycle tours for September , go for walks and dig my allotment.

Most of all I thank the docs and nurses in the good old NHS. There is no better place to be ill.

I hope this helps.

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