Treatment Options and Deciding What to Do???

User

Posted 24 Jun 2022 at 11:48

Hi I am a 68 years old and reasonably fit. I was diagnosed as having localised anterior Prostate Cancer , Gleason Pattern 3+4, Group Grade 2. I had an enlarged Prostate and PSA between 6.7 and 7.7 which caused me to have an MRI and subsequent biopsy.

The reason for this post is having found out I have cancer I wanted/ needed to do something about it; this lays out what I did and have discovered and my thinking about what I should do. I am sure having read some conversations I am not alone in discovering for my level of cancer there are a number of options and you're on your own almost as how to proceed. (I hasten to add my wife has been brilliant and very supportive). I am interested in the views of others who have faced the same dilemma and the outcomes of the decisions they have taken?

I have been referred to a number of excellent Consultants- a surgeon, oncologist and a Focal Therapy specialist; who have all been excellent and open abut the pros and cons of there specialist areas. I won't name them but they are all apparently at the top of their respective fields. (I should also add that in following my MRI the Regional NHS Review team also spotted I had a cyst on my Pancreas that was just visible at the edge of the MRI - consequently I have met with a Pancreas Specialist am having a another MRI focussing on this area. He believes this cyst to be more than likely benign but we're checking just to confirm, fingers crossed)

Anyway the meetings went as follows:

Surgeon: Strongly recommended surgery as being the only "definitive" way to minimise the risk of the cancer. As I have an enlarged prostate the surgery deals with both the cancer and the "flow" problem in one step. He did lay out the potential side effects and risks with surgery (Erectile Dysfunction, incontinence etc..) but given the type and level of my cancer there was a high likelihood of a successful outcome. Other treatments would require TURP surgery in order to basically ream out the Prostate to solve the flow issue. The TURP surgery would need to happen before any other treatment for the cancer itself. The surgeon was open about the alternative treatments, but negative on Brachytherapy therapy as to the long term risks of putting radioactive materials inside you which may solve Prostate cancer but could impact bowel and other organs. Also if it doesn't work then basically he would not be a fall back of surgery to remove the Prostate!

Oncologist: Excellent discussion on the options available, he ruled out Radiotherapy and hormone treatment as my cancer was localised and at a low to intermediate level. Did discuss the pros and cons of Brachytherapy and considered it an appropriate treatment with a high likelihood of success . He did confirm that the concerns of the surgeon were correct. He did also confirm I would need a TURP procedure prior to treatment.

Focal Therapy Consultant: In this instance met with the Consultant and an experienced Urology Nurse at the same time (an excellent process as they worked really well together as a team explaining and addressing our concerns). Basically ruled out HiFU as I have an Anterior cancer; the treatment treats the prostate from the posterior with a range of approx. 3cm; my prostate is enlarged and 5.2cm in diameter and hence the likelihood of success was diminished, however, cryotherapy was an option but given the expense of the equipment needed was available in central London, and he could refer if I wanted to explore this. He indicated that HiFU had a good but limited track record, simply not enough long term results to be completely sure. It did though have a side effect of usually reducing the size of the Prostate and hence the TURP procedure may not be necessary, rather wait and see until after the procedure. Follow up would require annual PSA testes and biannual MRI/Biopsy.

Summary: My wife accompanied me on all these visits and asked the difficult question-" Well if it was the Consultant themselves were in my shoes, what procedure would they opt for? To be fair they all answered the question and after laying out the issues they all indicated Bilateral nerve sparing, robotic radical surgery whilst not removing the lymphatic glands would be an option they would take in my shoes.

So I am therefore leaning in this direction, but prior to going ahead I thought I would seek the input and thoughts of this wider community as there is no great solution just a way ahead with risks that have to be looked at square in the eyes. So thoughts and views please?

User

Posted 25 Jun 2022 at 13:01

Hi,

I was diagnosed in April 2016 with PSA 2.19 and Gleason 3+4=7 and 5 samples out of 20 positive. I was offered robotic surgery by the first surgeon and i believe at the time he expected me to go down that route as he was selling me the equipment at his hospital the Lister in Stevenage but because a friend of mine had had Brachytherpy two years earlier i asked if i could speak to a Brachytherpy specialist and was lucky that there was one in the hospital at the same time.

The brachytherapy surgeon looked at my notes and said that he thought Brachytherpy was a good option but i would have to have it done at his hospital the Mount Vernon in London.

I did read up about both procedures and felt the Brachytherapy option was less invasive and maybe less side affects.

I will be six years from my operation in September with PSA 0.05. I was also signed off in December 2021.

If you click on my Avatar you can see my journey so far.If you have any other question i would be please to answer them.

Regards John.

Edited by member 25 Jun 2022 at 13:03 | Reason: Not specified

User

Posted 25 Jun 2022 at 16:34

We would definitely have gone with brachytherapy if it had been available but unfortunately, he wasn't considered suitable.

In terms of outcomes - for someone with a T1 / T2a the outcomes of RP, external RT, brachy and active surveillance are almost identical in terms of being progression-free at 5 years and still being alive 10 years post-diagnosis. The difference is all in the side effects. Obviously, active surveillance has no physical side effects but some men find it very stressful. With the others,
- all will lead to dry orgasms
- with RP, incontinence snd erectile dysfunction are likely post op but usually get better over time
- RT and brachy may lead to short term urinary problems and then erectile dysfunction 5 or more years later

NICE / BAUS statistics say that 90% of men will be using one pad per day or less at 12 months post-op and 90% of men will be able to get an erection either naturally or either mechanical/ chemical assistance 12 months post-op. Around 60% of men will regain natural erections by 2 years post-op

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

User

Posted 26 Jun 2022 at 08:22

Just a note. When I was deciding options, I was told that brachytherapy would not be possible because of my previous TURP. Apparently, the seeds would just fall out of place.

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User

Posted 24 Jun 2022 at 23:00

Seems straightforward to me - you have explored the options and all specialists are in agreement that RP is the most suitable option. Now you just need to satisfy yourself that the various certain and potential side effects are acceptable to you - if not, you revert to the next best option with side effects you are willing to risk.

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

User

Posted 25 Jun 2022 at 12:15

Yes that's true, however the Consultant's are the Practitioners not the Recipients of the procedures; plus reading through my post I may have over emphasised Surgery with regard to the Oncologist's view he considered Brachytherapy pretty equal to surgery whereas the others (both surgeons at heart) were strong on surgery.
As you say it's the side effects I'm most concerned about, and hence I'm very interested in hearing what are the experiences of others who have undergone these two procedures, ie the nerve sparing surgery and separately the brachytherapy. The consultants are all very positive about the procedures and quote success rates above 95% but what is the real definition of "success" in terms of "Quality of Life" plus someone has to be in the other 5%.
At the end of the day I will take a pragmatic view and move ahead and act but I have time to get as much input/ info as I can as in both instances there's no going back!

User

Posted 25 Jun 2022 at 13:01

Hi,

The brachytherapy surgeon looked at my notes and said that he thought Brachytherpy was a good option but i would have to have it done at his hospital the Mount Vernon in London.

I did read up about both procedures and felt the Brachytherapy option was less invasive and maybe less side affects.

I will be six years from my operation in September with PSA 0.05. I was also signed off in December 2021.

If you click on my Avatar you can see my journey so far.If you have any other question i would be please to answer them.

Regards John.

Edited by member 25 Jun 2022 at 13:03 | Reason: Not specified

User

Posted 25 Jun 2022 at 16:34

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

User

Posted 25 Jun 2022 at 18:58

Great feedback thank you.

John I was wondering if you had the TURP to address the flow problems associated with an enlarged Prostate? I am particularly interested in the feedback related to the consequences of having to have both the TURP and Brachytherapy.

User

Posted 25 Jun 2022 at 20:10

I did not have TURP before my Brachytherpy as i did not have any flow problems and i don't remember them saying i had an enlarged prostate.

The main reason i was sent for a PSA test was they found microscopic blood in my urine and overall i have never had any leaks or bowl problems at all.

Apart from the early worry of new PSA levels between tests i think i have been very lucky so far.

Looking back i should have asked more questions at appointments but because i wasn't getting any real problems between blood test and the numbers where dropping they just patted me on the head and sent me on my way.

If my new blood test in September comes back ok i may start to believe i am beating it.

Regards John.

User

Posted 25 Jun 2022 at 20:10

Thanks Bill. I'll be interested to hear your feedback.

I can't comment on your situation; but I would take heart from the fact that within reason these days the discussion regarding Prostate Cancer is not about the Consultants stopping it but more about the side affects of whatever treatment one receives.

I wish you well on Monday

User

Posted 25 Jun 2022 at 21:20

Bill, you haven't yet got your full diagnosis, but some thoughts based on what you do know and my own treatment.

Your PSA and Gleason both make you a high risk patient. You don't yet know your staging.

In the UK, as a high risk patient, you would not be eligible for LDR/seed/permanent brachy, but you might be for HDR/temporary brachy, providing your staging doesn't exceed T3bN0M0.

I was in a similar boat and went for a combination of external beam radiotherapy and HDR brachytherapy, called HDR Boost. The external beam covers prostate, seminal vesicles, and I also opted for pelvic lymph nodes. This is done at a reduced dose (23 x 2Gy = 46Gy in my case). No cancer was found outside my prostate (except for being T3a so it had just breached the capsule), but the idea of the wider external beam is to mop up any micro-mets (mets too small to show on scans) in locations it's most likely to spread to next, to prevent them causing relapse later on. HDR brachy (single fraction 15Gy) is also used on the prostate only (can also do seminal vesicles if T3b) to boost the effective treatment in the prostate to a higher level than can be safely done with external beam alone.

My oncologist says this is a good combination to hit high risk local (T2) or locally advanced (T3) cancer hard, while having a relatively lower risk of significant side effects because the radiation outside the prostate is at a reduced level. I'm now almost 3 years after radiotherapy and 18 months after finishing hormone therapy, and I recently told my oncologist I almost wouldn't know anything had been done and everything works, which is not the state I imagined I'd be in now at the outset. I do have one long term side effect, rectal bleeding, but it's minor, painless, and doesn't cause incontinence, so no impact on quality of life.

In comparison, a prostatectomy does have a hard cut-off around the prostate, and would not handle micro-mets, which are a higher risk with higher risk disease (although wide excision can handle known T3a). Also worth asking about the likely extent of pelvic lymph node removal, because if this is extensive, it can cause lymphodema in the legs.

User

Posted 26 Jun 2022 at 08:22

Just a note. When I was deciding options, I was told that brachytherapy would not be possible because of my previous TURP. Apparently, the seeds would just fall out of place.

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