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And so the journey begins

User
Posted 04 Jul 2017 at 20:14

Today (Independence Day - July 4th 2017) was diagnosed with prostate cancer following biopsy results. Apparently 1 of 10 biopsy samples showed grade medium cancer.

The MRI scan I had was a waste of time apparently as it was done shortly after the biopsy and as a result showed bleeding in the area as one might expect and therefore diffcult to differentiate anything on the scan.

My PSA levels have risen from 1.3 to 12.7 in the last 12 years. I am aged 65 years normally fit and healthy, though a bit "winded" by the news today which I thought was coming as I had assumed the worst. Nurses don't make good patients!

Gleason score of 3+4 = Total 7

Now have to wait for a bone scan and then the usual make the decision between the 3 options, none of which seem particularly attractive as I guess active monitoring will not be encouraged over the options of having a prostatectomy or the brachytherapy.

Would like to see the use of proton beam therapy being used in the U.K. for this type of cancer.

Will keep the community posted as I travel along the prostate highway.

 

User
Posted 04 Jul 2017 at 22:47

Hello Tinkerbell and welcome
As a nurse you'll already be aware that 3+4 is a little better than 4+3.

My husband had permanent seed brachytherapy a couple of years ago now and he has been one of the lucky ones in that his PSA has remained low.

You could go to Publications one the main page and download the tookit which will give more information on the various treatments.

I expect you'll get other replies from those who have the experiences you need for advice.

Please do keep us posted. All information, good or bad, will help somebody

Best wishes

Sandra

*****

We can't control the winds - but we can adjust our sails
User
Posted 22 Jul 2017 at 10:47

Thanks Johsan for the reply.

Had the bone scan on the 10th July - result negative! That was a relief that there was no evidence of any spread to bone.

So an appointment with the Surgeon next week and an appointment with the Oncologist the week after and I guess then its make your mind up time.

As I sit here typing I can feel a stinging sensation in an area I assume must be from my prostate, reminding me that it is still there and not to get complacent.

My children are all grown up adults but as yet I haven't told them, no point in them worrying when I don't know all the answer myself yet.

Once I have been able to make the decision on which path to follow I will let them them know.

Pleased that your husband's treatment has been successful that was good to read and reassuring. What was the deciding factor that made your husband choose the option of brachytherapy over surgery e.g. the Da Vinci robot?

Best wishes

User
Posted 22 Jul 2017 at 11:23

Glad it's sort of good news?

As for John's decision to go for brachytherapy. Well he'd had the year on AS to ponder although having said that he straight away said no operation because he didn't want to risk incontinence. For some reason he was more adamant about that than ED, although his age and general slowing down in the intimate department may have influenced that choice.

With a Gleason of 3+4 have you been offered AS or do you just want to get on with it and get it sorted. Some men prefer to get the cancer out.

We have been lucky with the treatment he had. No major problems, even this far down the line when I was expecting some kick back from the radiotherapy seeds, perhaps causing bowel problems.
Other men going the same route haven't been as lucky but I think they are quite rare.

Good luck with whatever path you choose,and keep posting.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 01 Aug 2017 at 11:20

Hi Sandra

Pleased that John's treatment has been a success todate, long may it continue.

I saw the surgeon last week, seemed a nice man, keen to get his hands on my prostate apparently! Says he'll take the prostate and associated lymph glands too. If there has definietly been no spread that should be the end of that journey, so just really need to get the incontinence sorted out so busy doing pelvic floor exercises whenever I can remember, not something I have tended to do on a regular basis!

Appointment ths week with the Oncology consultant and a pre assessment clinic appointment - so should know more by the end of the current week.

Initial thinking is leaning towards the surgery, once its out it out kind of philosophy.

Yes I was offered AS in terms of it was something I could consider but it wasn't actively promoted, seems they want to do surgery so far.

Will keep in touch

James

User
Posted 01 Aug 2017 at 12:20

Hi Tinkerbell,

I must say it is difficult to decide what way to jump when like you i was offered radical surgery or Brachytherapy and i did look closely at both the options with PSA 2.19 and Gleason 3+4=7 and my local hospital specialist thinking he had got the job until I asked to see the Brachytherapy specialist to look at his views on it.Some of us have little choice on which operation to have.

I must admit i was alway had a leaning towards the Brachytherapy option after a close friend had taken the Brachytherapy route three years earlier and was in remission and signed off.

But it was not all good news for him as four years on he had a heart attack on holiday in Spain,had been under no stress, had sold his business and retired before sixty five and was in generally  good health.

All of us on here have different levels of PC and none of us can predict our future and may well die from another cause as we get older (I am 71).

I wish you luck with your choice of treatment, and there is plenty of help on this site and a lot of members with experience of the PC.

 

Regards John. 

User
Posted 27 Sep 2017 at 09:37

Hi Guys

Just an update, have opted for surgery - well I would if they would stop changing the dates! :-)

I was booked to go in for robotic prostatectomy (RP) on 29th September, said I would receive a letter.

A week before the 29th still no letter so rang up hospital to be told the date had been cancelled and that I had been rescheduled for the 2nd October. OK - nice of you to let me know - not as if I have anything better to do with my life anyway!

Following day another call from the hospital to me saying my rescheduled appointment had been rescheduled to September 25th last Monday.

Despite being inconvenienced by the admissions department I was pleased that the date had been brought forward.

Turned up at the hospital at 7am for the operation, was prepped for theatre, observations taken, blood taken seen by anaesthetist etc all ready to go when the op was cancelled as they couldn't find my notes, waited another 4hrs for them to find the notes, no joy had to come home again.

Yesterday 26th received a call to say that notes had been found in Medical Records Dept - strange I thought that they should be found in the most obvious place to look! - anyway I am rescheduled again back onto the date of Monday 2nd October - hoping that this time I make it through the theatre door - and out again.

Consultant has said that he feels there is no need to take the lymph glands, with only 1 biopsy out of 10 showing any cancer and it not showing signs of spreading he feels he can take out the prostate itself and leave everythihg else in situ.

I guess I'll know more after Monday 4th October 2017 :-)

User
Posted 13 Nov 2017 at 14:37

The story so far.......

Had the robotic prostatectomy on the 2nd October, stayed in hospital for one night.

Hated having the cather in situ especially as it leaked anyway not quite a tight fit! 

Two weeks later trial without catheter - managed to pass urine so sent home with some pads - and boy did I need them.

No help from my local District Nursing team contacted them to see if they could provide pads for incontinence. A week later they rang me back to say they didn't provide pads and "discharged" me! - I only thought you could be discharged if in fact you had been under someone's care in the first place.

Anyway ASDA and Boots have plenty so have raided their shelves for the last few weeks.

So 3 weeks after having the catheter out I am able to use a bottle at night but during the day standing and sitting still causes me to be incontinent and haven't yet mastered control of that.

Still do pelvic floor exercises and using the "Squeezy" app to remind me.

Had a furether PSA test on 6th November - result 0.06 - that has to be a bonus.

Saw specialist pn 9th November - he was happy with the result of the PSA. Said the original biopsy had missed cancerous areas of the prostate but those that were in evidence were all confined to the prostate and no spread - again another bonus.

Another PSA test in 5 weeks and some physio ordered for the pelvic floor exercises - so that's were I am at for now - fingers crossed.

Must say the specialist nurses on this site have been a real bonus for me, every time I have been in contact with them I have felt much better for speaking to them. They are extremely knowledgeable and they have my gratitude for the work that they do.

User
Posted 13 Nov 2017 at 15:26

Glad hat's ll over for you Tinkerbell.

Remember though, they you have had major surgery so try not to do too much, too soon.

Fingers crossed for the next PSA

We can't control the winds - but we can adjust our sails
 
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