3 years post RP, one lymph node positive.

User

Posted 23 Jan 2020 at 10:25

Hi all. My last post "Biochemical Recurrence What Next?" details our journey to where we are now, but briefly RP 2016, aged 53, T2C Gleason 6 with some of tumours upgrade to Gleason 7 after OP. Supposedly no break through (but close to wall so obviously did jump) and rising PSA since 0.3 last January with no joy from PSMA Pet Scan in the spring. We now have PSA of 0.6 (doubling time 8 months??) and received confirmation of cancer in just one Lymph Node in the pelvic region last week, after a (successful) PSMA Pet Scan in Heidelberg.

This seems to be better than having it in more than one (though maybe it is as yet undetectable in further nodes???) And definitely a lot better than having a bone metastases. From what I've read its not really considered a metastases any more in the sense that it's much more treatable and possibly curable. I'm a bit afraid to go digging too deeply! (Newer articles are definitely more optimistic but...!)

Has anybody else had this and what was the treatment?

We have our appointment on Tuesday and for the first time in this whole saga my husband is admitting to being worried. I'm seeing ADT mentioned all over the place, but my OH (and his Surgeon it seems) averse to this for him as his job is highly technical/mathematical and he can't afford any slowing down of cognitive ability which wouldn't affect most people in their jobs but it seems would affect what he does! Are there any other men here who were in this situation and how did it affect them?

Apart from ADT to shrink it, what are the other possible treatments? Can lymph nodes be surgically removed at this stage?

Do they do SRT on lymph nodes? And what sort of RT would be involved?

Is Chemo going to be mentioned?

Anybody else have this situation?

Any pertinent questions we should ask?

Thanks in advance! (Try not to scare me!!😏😏)

Misty

User

Posted 23 Jan 2020 at 13:52

In all likelihood they will offer salvage external beam IG (image guided) RT to the prostate bed and pelvic area, covering the lymph node if possible. He can have RT without HT but since all the research shows RT is more successful in combination with HT, it seems daft to put him through the RT with its side effects while not giving it the absolute best chance of working. Even 6 months would be worth doing.

John had a very technical fast paced job but I didn't see the HT have any impact on this apart from he needed a nap in the office a couple of times towards the end of the RT.

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

User

Posted 23 Jan 2020 at 23:25

Misty

I,ve replied to your pm.

Your husband is relatively young. With successful salvage treatment, he could have a lot more than ten years!

ulsterman

User

Posted 23 Jan 2020 at 13:51

Sounds like you will get salvage radiotherapy to the prostate bed + lymph nodes (depends where it's is?)

To have the best effect and chance of durable remission he will need short term ADT and possibly Chemo.

User

Posted 23 Jan 2020 at 15:17

I had ADT for 2 years 3 months or so plus salvage radiotherapy in March/April 2018.

My job was very demanding, I must admit it did affect my concentration levels but I could still teach up to 1st year University Physics with no real hassles due to the ADT.

I tired more easily and was exhausted by each weekend though.

Ido4

User

Posted 23 Jan 2020 at 17:30

Misty

A year after my prostatectomy, I had a slowly rising PSA and had a PSMA scan. Cancer was found in 2 lymph nodes in the pelvic region. I immediately started bicalutimide and three months into the bicalutimide, I started 33 cycles of radiotherapy. I was on bicalutimide for 18 months altogether.

i got the results of my latest PSA test today - still <0.006, the lowest level the machine can measure.

I didn’t enjoy RT and HT, had a few complications, but look at the PSA - that’s a potentially curative result. Your other half has every reason to fight.

As much as I disliked bicalutimide, I’d insist on it. Recent trials seem to indicate that it can benefit men in your husband’s position.

ulsterman

User

Posted 23 Jan 2020 at 17:52

The men on here that have recurrence after RT recently tend to be those whose oncologist said they didn’t need HT. There has been one research report suggesting it doesn’t make any difference. In the meantime, there are years and years of combined expertise and experience that RT is more successful if given with HT. In the meantime, research on breast cancer has shown that the longer the person has HT the less likely the breast cancer is to return; as a result, NICE is recommending women have up to 10 years of hormones. I know they are not the same cancer but they are closely related and since far more is spent on BCa research than PCa research, it does make me wonder what we are missing.

Your OH must do what he and his oncologist think best but I would not be particularly interested in what the urologist thinks as RT/HT usually isn’t his or her area of expertise.

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

User

Posted 23 Jan 2020 at 22:33

In answer to your question I am just getting back to a kind of normal now, one year after my last PROSTAP 3 injection. (3/1/19)
It’s taken a while to clear from my system. I was on it for over 27 months.

Ido4

User

Posted 25 Jan 2020 at 11:49

Although much of the NHS is staffed by Indian doctors I am sure there are still clinicians left in India capable of reading and analysIng any scan.

Fortunately I am in no need of one presently, but if in future I do need one I will be having a holiday in India including a scan, sooner than pay £2600 to some place in England.

Cheers, John.

Edited by member 25 Jan 2020 at 11:55 | Reason: Not specified

User

Posted 26 Jan 2020 at 07:10

I had a full body MRI scan at Paul Strickland.

Because I was so interested in it, my consultant setup for me to meet the radiologist, and the radiologist went through it all with me again, explaining how he analysed it. I was fascinated, as you might imagine, and he liked that he actually saw a patient (from the outside) which they normally never do.

At the start, he checked back which scanner I'd been done on, because he said they all behave differently, and he takes that into account when analysing the scan. That's the sort of thing a radiologist wouldn't be able to do if just presented with a scan from somewhere else. When I asked about this, he also commented that if they scan me again, they will try to do it on the same scanner for better comparisons.

This was an MRI, not a PET scan, but it does not surprise me radiologists understand and account for the quirks of specific scanners they use when analysing the results.

User

Posted 18 Mar 2020 at 16:24

Your doubling time at the minute is about 13 months.

Stereotactic RT is also referred to as SBRT or SABRE - if the search function is working, you should be able to find a number of other members here that have had this.

Best to remove the consultant's name from your post :-/

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

User

Posted 19 Mar 2020 at 09:35

I put your results from Jan 19, April 19, Aug 19, Nov 19 and Jan 20 into a doubling time calculator - you can just google these.

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

User

Posted 19 Mar 2020 at 10:46

Take the treatment of you can, and make sure he self isolates.

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User

Posted 23 Jan 2020 at 13:51

Sounds like you will get salvage radiotherapy to the prostate bed + lymph nodes (depends where it's is?)

To have the best effect and chance of durable remission he will need short term ADT and possibly Chemo.

User

Posted 23 Jan 2020 at 13:52

John had a very technical fast paced job but I didn't see the HT have any impact on this apart from he needed a nap in the office a couple of times towards the end of the RT.

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

User

Posted 23 Jan 2020 at 15:17

I had ADT for 2 years 3 months or so plus salvage radiotherapy in March/April 2018.

My job was very demanding, I must admit it did affect my concentration levels but I could still teach up to 1st year University Physics with no real hassles due to the ADT.

I tired more easily and was exhausted by each weekend though.

Ido4

User

Posted 23 Jan 2020 at 16:03

Did you find once you completed the ADT that everything returned to normal?

User

Posted 23 Jan 2020 at 16:08

Hi Lyn. I thought there was an increasing belief that ADT while keeping the numbers down, could not be proven to prolong life? Is that in relation to ADT on it's own or all ADT do you know?? Our surgeon/urologist seems to be wary,, and loathe to use it on my husband but maybe things will change when we see him next week!

User

Posted 23 Jan 2020 at 17:30

Misty

i got the results of my latest PSA test today - still <0.006, the lowest level the machine can measure.

I didn’t enjoy RT and HT, had a few complications, but look at the PSA - that’s a potentially curative result. Your other half has every reason to fight.

As much as I disliked bicalutimide, I’d insist on it. Recent trials seem to indicate that it can benefit men in your husband’s position.

ulsterman

User

Posted 23 Jan 2020 at 17:50

Originally Posted by: Online Community Member

Misty

i got the results of my latest PSA test today - still <0.006, the lowest level the machine can measure.

I didn’t enjoy RT and HT, had a few complications, but look at the PSA - that’s a potentially curative result. Your other half has every reason to fight.

As much as I disliked bicalutimide, I’d insist on it. Recent trials seem to indicate that it can benefit men in your husband’s position.

ulsterman

Hi Ulsterman. That sounds very positive! What side-effects did bucalutimide have on you? Did it impair cognitive function? And did it cause gynaecomastia which my OH already has on one side and is terrified of exacerbating further. He really is of the opinion that life as himself for 10 years would be preferable to longer life with ADT side effects. Is it really as bad as it sounds?? As a woman in my 50s I put up with so much of that stuff...I feel like telling him to grow a pair....and I dont mean moobs😂😂. But I say nothing and let him figure it all out for himself....as a supportive partner should! I guess theres only so much you can take in at a time....at least he's progressed from his "I'm inclined not to have any treatment" phase😏😏🥴.

User

Posted 23 Jan 2020 at 17:52

Your OH must do what he and his oncologist think best but I would not be particularly interested in what the urologist thinks as RT/HT usually isn’t his or her area of expertise.

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

User

Posted 23 Jan 2020 at 17:56

I should have asked; now that recurrence has been confirmed, he is being referred to oncology, isn’t he?

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

User

Posted 23 Jan 2020 at 18:35

Originally Posted by: Online Community Member

I should have asked; now that recurrence has been confirmed, he is being referred to oncology, isn’t he?

I dont know about oncologist! He did mention a radiologist before but that's not the same thing. We will see the urologist on Tuesday. Doesnt help that he agreed with my husband when he said he didnt want HT! My husband is adamant about that! We have been attending a private hospital but it's an hour away. I think the RT would be better conducted in our local university hospital. I will update here after Tuesday.

User

Posted 23 Jan 2020 at 22:33

Ido4

User

Posted 23 Jan 2020 at 23:25

Misty

I,ve replied to your pm.

Your husband is relatively young. With successful salvage treatment, he could have a lot more than ten years!

ulsterman

User

Posted 24 Jan 2020 at 13:03

If you don't might saying, what is the present going rate for a PSMA scan in Heidelberg? It can be a bleak place in winter, although beautiful and inviting city in summer but perhaps you only briefly saw part of the hospital complex which is a couple or so miles from the city centre.

Barry

User

Posted 24 Jan 2020 at 13:28

Originally Posted by: Online Community Member

I trust you have a disc of the PSMA scan for scrutiny at the hospital where you are likely to have salvage RT. This might be by normal External Beam or SBRT depending on what they have and how they see it. When UCLH were presented with my PSMA scan they arranged for an MRI to follow it.

If you don't might saying, what is the present going rate for a PSMA scan in Heidelberg? It can be a bleak place in winter, although beautiful and inviting city in summer but perhaps you only briefly saw part of the hospital complex which is a couple or so miles from the city centre.

Yes Barry we have a disc, which we have forwarded to the urologist in advance of our appointment on Tuesday.

Heidelberg is a beautiful city. We stayed this time for 3 nights and went to an opera with the local orchestra/opera chorus which was fantastic!! We also walked the legs off ourselves (well by my standards which are pretty low in fairness😂😂). The weather was amazing and we drove to see some places nearby including a fabulous ancient fortified town called Dilsberg. Last time we went to see the castle but only stayed 2 nights.

I'm thinking it cost about €1500 for the scan but last time we got some of that refunded despite them doing it twice. This time they only needed to do it once as it finally showed up! We were told we had a 74% chance of seeing it this time at PSA of .6. Last time was 54% odds at 0.4. It's kind of weird that we had such a good time there....despite our reasons for travelling...but we decided to make the most of the excuse to go away!!

User

Posted 24 Jan 2020 at 16:40

That's a lot cheaper than The London Clinic - I paid £2600

Ulsterman

User

Posted 24 Jan 2020 at 18:12

Oh my goodness!! Can you get tax relief on that??

User

Posted 24 Jan 2020 at 19:04

I read a G-68 PET-PSMA scan is four hundred quid in India.

Cheers, John.

User

Posted 25 Jan 2020 at 01:28

If that is correct John, it is very reasonable but you have to remember the cost of labour there is very different to the advanced European countries and in the USA where medical treatment is more expensive. If I need another PSMA scan outside the NHS, I will seriously consider renewing my acquaintance with Heidelberg making it part of a holiday, as the scan is apparently much less expensive there now than in the UK.

Reverting to an earlier post, I had 8 months of HT which ended during my RT (in Heidelberg), I know I will be offered HT again shortly due to my rising PSA but will resist this for as long as I can by having more radical treatment instead if I possible. So I empathise with anybody who wants to avoid HT but at some stage, either in conjunction with something else or of itself it can be needed. I have wondered whether had I continued HT after my RT I would have been in a different situation to the one I am in now ('What if'?) but will never know. At least I have had some 12 years without some of the side effects of it!

Edited by member 25 Jan 2020 at 01:31 | Reason: Not specified

Barry

User

Posted 25 Jan 2020 at 01:50

Originally Posted by: Online Community Member

If that is correct John, it is very reasonable

Here’s one for INR 14,000 = 150 quid! One can only think that scans at the likes of the Paul Strickland Centre, supposedly a charity, and costing £2600, charge what they think they can get away with!

Cheers, John.

https://www.houseofdiagnostics.com/product/psma-pet-ct-ga-68-psma/

Edited by member 25 Jan 2020 at 01:55 | Reason: Not specified

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