Only 1 Treatment being offered

User

Posted 07 Aug 2020 at 15:48

When you get the full information, as mentioned before, there is nothing to stop you talking to an oncologist about potential alternatives to surgical treatment, but bear in mind your particular case should already have been considered by a panel of experts of various medical disciplines, called the “MDT” or Multi-Disciplinary Team, who will have made recommendations about going forward.

Cheers, John.

User

Posted 08 Aug 2020 at 01:07

To be pedantic, you had one biopsy at which cores where extracted. The number of needles used for this can vary but most often is 12 in the TRUS biopsy you will have had.

As John says, you are likely to lose some length of your penis due to cutting and rejoining the pipe during the op. However, a combination of HT and RT can also lead to a reduction in your penis. It is therefore important that you take measures at the appropriate time to maintain size and function after treatment.

Barry

User

Posted 08 Aug 2020 at 11:56

Thanks Barry, that was something I hadn't thought off.

I "assume" that if all being well, the I may get a erection but not able to ejeculate ?

Scan, which is a Gallium PSMA PET/CT scan is this coming Thursday.

I have also seen that high intensity focused ultrasound could be a way forward. Does anyone have any Knowledge on this?

Thanks again, this has been so helpful.

Paul

User

Posted 08 Aug 2020 at 13:38

Well, you are ‘lucky’ to have the Ga68 PET-PSMA scan at a cost of around £2600 (unlucky to have to have it, of course), as that is considered to be one of the most accurate scans to locate cancer and moreover any metastases.

Are you going private or on the NHS? There are only a handful of places that do Gallium scans in Britain, one being the Paul Strickland charity centre in London.

The radioactive Gallium tracer is very difficult to produce with a short half-life, so don’t be too upset if at the last minute you are told your appointment has been rescheduled.

Cheers, John.

User

Posted 08 Aug 2020 at 13:59

It can also work the other way round that you might not be able to get an erection to enable penetration but can still climax through masturbation or stimulation by another means, orally for example. After prostatectomy those that ejaculate are very likely to find the fluid more transparent. Some men say the feeling is different and a few better than before, others not so good. It's subjective and variable. After EBRT the fluid also tends to become progressively more transparent and less in quantity. In due course you may have a dry climax. With RT erections also become less. Some men find pumps and tablets etc, help preserve or help function after both RT and surgery. Men do experience different results.

The PSMA scan serves to show any spread to bones and elsewhere.

HIFU is a niche treatment for which you have to be a suitable candidate. There are situations that could rule it out, for example if your PSMA scan shows the cancer has spread to bone or has gone to where the HIFU wand cannot focus the sound or if the amount and location of your cancer is too great for HIFU to treat. As with all forms of treatment, there are pros and cons with HIFU but until all your tests/scans have been evaluated it is too early to consider this. Actually, there is another treatment called Cryotherapy that a few men have but here again you have to be shown to be a suitable candidate.

Edited by member 08 Aug 2020 at 15:46 | Reason: Not specified

Barry

User

Posted 08 Aug 2020 at 14:44

Thanks John, Barry.

I am on the NHS, maybe I only live about 4 miles away from Royal Marsden in Sutton that I am being offered it, plus age??????

Take your point about getting all the tests done before knowing which one to go for but not heard of Cryotheraapy, will look up thanks.

Paul

User

Posted 08 Aug 2020 at 16:11

Both HIFU and Cryotherapy are treatments that come under the term 'Focal', the first destroying cancer cells by heat and the latter by formation of an ice ball. There are other focal treatments such as FLA (Focal Laser Ablation) but this is not available in the UK yet to the best of my knowledge.

Like you I lived close to the Sutton Branch of the Royal Marsden at the time of my diagnosis, Coulsdon to be precise and started HT at that hospital before moving house. I did ask if they would do a 68 Gallium PSMA test on me in 2015 but they were unable to do this on the NHS at that time. They quoted circa £3,500 for doing the scan privately which was by far the most expensive price I obtained so I paid for it to be done elsewhere.

Barry

User

Posted 14 Aug 2020 at 16:30

Well. Had by PET scan and got results.

Seems its gone to both sides of the prostate, and is "touching" a small lymph node. No sign of Metastasis.

Next meeting is next Thursday as there "bumping" me up. With a Consultant specialising in radiotherapy, although I have been told nothing has been decided with out going though all the options.

Didnt want to say anything about my T level, other than we lets get you booked in ASAP...but I guess T3 now.

Very worried, but one step at a time i suppose....

Paul

User

Posted 15 Aug 2020 at 06:54

Hi Paul,

Why do you assume you are T3? Your cancer is probably contained within your prostate, so unless you have a prostatectomy and subsequent biopsy you will never know. Radiotherapy should kill it all off anyway if that’s what you opt for.

I think you have over-researched your condition (like we all did!)

Best of luck, anyway.

Cheers, John (T3a - 26 months post-op, PSA undetectable)

User

Posted 15 Aug 2020 at 09:31

Originally Posted by: Online Community Member

Hi Paul,

Why do you assume you are T3? Your cancer is probably contained within your prostate

He said it was "touching a lymph node". Can it be doing that if it's still contained in the prostate?

(I would think not, but don't know for sure.)

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 15 Aug 2020 at 10:57

Hi John

Point taken about over-researching stuff. Need to chill out a bit ithink. I assume T3 as it was touching, but they were very vague on the phone, so putting 2+2 and making 5....!!

Thanks again

Paul

User

Posted 15 Aug 2020 at 21:54

Originally Posted by: Online Community Member

Hi Paul,

Why do you assume you are T3? Your cancer is probably contained within your prostate

He said it was "touching a lymph node". Can it be doing that if it's still contained in the prostate?

(I would think not, but don't know for sure.)

Sometimes, doctors make comments without realising that patients or their families will analyse every word afterwards. The doctor may have been speaking literally, in which case yes it sounds like you will be upgraded to T3. Or he may have been speaking figuratively, in which case you are still a T2.

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

User

Posted 20 Aug 2020 at 15:13

Update.

Saw the radiologist today. Explained that while I was a T2, the PET scan seem to show that a Lymph node 9 mm long was showing as "suspicious".....

Radiologist said that If I have surgery, I have a 90% chance of needing Radio/Hormone therapy anyway. Of course If I did the R/H Therapy , Surgery would be a lot more complicated after that.

Seeing Surgeon on Wednesday.

All a bit of a blur.

Paul

User

Posted 20 Aug 2020 at 17:05

Well glad you are making progress with the diagnosis.

I went the surgery route based on being told that it was at least 80% likely that I wouldn't need any further treatment.

If its 90% likely you will then I don't know why they would go the surgery route? Will be interesting to see what the surgeon has to say.

Good luck

User

Posted 20 Aug 2020 at 17:10

I don't understand why anyone goes for surgery knowing that there is a strong chance of needing adjuvant RT, either - two sets of side effects and if the op leaves a man incontinent the RT is so much more difficult to endure.

It will be useful to clarify with the surgeon whether the op would still be nerve sparing on one or both sides.

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

User

Posted 31 Aug 2020 at 14:03

Hi All,

Saw Surgeon on Wednesday.

Was happy to do the surgery, but told me that I had only a 40% chance of the nerves being save (It might have been he could save only 40%, mind was a blur, to be honest, even with the wife there) , and that in his view it was 50/50 that I would have need HT/RT anyway.. Said he could the lymph node out, but there was no evidence that it would help in my case, as I was a N1.

A follow up letter from the radiologist to my GP stated that the PSMA PET scan showed a 9 mm low grade PSMA avid distal left common iliac node suspicious for involved nodel disease.

So with that, I decided that Surgery was out, and that HT/RT is the way to go… The surgeon did say that he could do surgery at a later date, but would be a more difficult operation, and I suspect I will lose all the nerves.

Started the HT on Friday, (Tables 1st), Injection on the 7th. I do however feel strangely “happy” that I am on this route, I just didn't fancy taking my chances with surgery.

Thanks for all you input

Paul

User

Posted 31 Aug 2020 at 20:29

It is almost always easier to bear once the decision is made.

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

User

Posted 31 Aug 2020 at 20:51

Originally Posted by: Online Community Member

I do however feel strangely “happy” that I am on this route, I just didn't fancy taking my chances with surgery.

Sound advice is; if you can't decide then toss a coin. If you find yourself praying that it will come up one side and not the other, then put the coin back in your pocket and go with what you clearly wanted anyway.

Dave

User

Posted 31 Aug 2020 at 21:38

Think I would have gone exactly the same route in your position. Hope everything goes well

User

Posted 09 Sep 2020 at 19:47

Hi I had diagnosis at end of March with a Gleason 3+3 confined to the prostate. I was offered Prostatectomy in time due to Covid. But given Hormone tablets for 3 months with option of Prostatectomy or Radiotherapy. Not wanting either of these I looked into HIFU which wasn't doable and then Focal Cryotherapy. I t took a while but I got a referral from GP and had the treatment in August. Still have Catheter which I hope to have removed soon . Hoping for a low PSA in 11 weeks time. 2 hour procedure under general anaesthetic No pain 👍My PSA was 5.2 at highest.

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