Possible biochemical recurrence.

User

Posted 13 Aug 2021 at 07:53

Wow, that's over 25% body weight increase. When you consider that there will probably have been muscle atrophy, that is a lot of fat gained.

User

Posted 13 Aug 2021 at 19:26

Yes a lot of 'fat' whatever it was but at least I was expecting such things, most of it seemed to be around my stomach. Cannot deny that the weight gain didn't affect me mentally, I did struggle with it but, again, at least I sort of expected that. But, in all honestly, I'm over that now certainly and the treatment has done what it was supposed to do.

Peter

User

Posted 13 Aug 2021 at 21:54

I was not too badly affected by increased weight. I was 53 when I started ADT for two years.

This was on the news recently.

https://www.google.com/amp/s/www.bbc.co.uk/news/health-58186710.amp

Most people with PCa will find themselves starting ADT. More or less exactly at the same time as their metabolism is starting to crash. Piers you are probably young enough not to suffer too severely.

The exact duration of ADT is up for debate. It is probably doing the greatest benefit in the six months prior to RT and for six months afterwards. Beyond that time its value may be less.

If the oncologist thinks it appropriate I would start on ADT. If you don't like it then stop as soon as side effects become troublesome.

Obviously your decision is between you and your medics. This forum just gives different perspectives.

Dave

User

Posted 15 Aug 2021 at 14:55

One of the things I found with HT was that as well as tending to do less exercise due to premature fatigue, what exercise I did was less vigorus than before I started HT and my waist size inevitably increased. This has continued to be a problem over the years, despite my only eating about half of the amount of food I used to consume. However, I used to play a lot of short tennis and table tennis and golf to a reasonable standard but am not now up to it, (back and legs), so it's now just slow walks. I really ought to do some gym work I guess!

Barry

User

Posted 15 Aug 2021 at 22:36

I had bicalutimide for 10 weeks prior to my surgery in June 2020. In that time I had moobs appearing and very sore nipples. I believe this was the start of breast budding.

Been on Prostap for 8 months now. Moobs bigger than ever but no nipple pain. As mentioned elsewhere, I have really bad hot flushes. About 20 a day. I can manage for now.

One issue I do struggle with is fatigue in my legs and gluts. Really struggle to walk up hills and killing me on my hilly golf course. It's not every day but very debilitating on the days it does appear.

Jim

User

Posted 16 Aug 2021 at 19:45

Yes, for me fatigue was a big issue us the general lack of strength. Whenever I was on the floor there was no way I could just get up again had to roll over and haul myself up using the couch/chair. It has been said that in general we get over effects of HT in 18 months or so but the effects may last for as long as we were on treatment. The latter certainly seems to be the case with me - I finished Zoladex summer 2018 and, in my opinion, getting over it 'properly' only recently. Doing a lot more now than even a few months ago and weight going down.

Peter

User

Posted 15 Sep 2021 at 17:33

Okay, so my latest PSA is 0.17. The data looks like this:

21 Jan 2020 = 0.04

20 April 2020 = 0.04

24 July 2020 = 0.04

10 November 2020 = 0.08

15 December 2020 = 0.05

16 March 2021 = 0.08

15 June 2021 = 0.14

22 June 2021 = 0.13

14 September 2021 = 0.17

The consultant said that I need to book a PSMA PET scan at 0.2. However, clearly things are heading the wrong way. Am I just wasting time by waiting till I tick over 0.2? Or would the scan be unhelpful at the current number?

Also, can anything be read into the data? Does it look like localised cancerous cells left over? Or could it be a small mets?

Many thanks

User

Posted 15 Sep 2021 at 18:38

The PSMA PET scan will not show up the cancer cells if there are not enough of them, so you need to wait until the PSA has reached a reasonably high threshold. I believe there are a few types of PSMA PET scan Galium, Choline, maybe others. I don't know which is more sensitive and what the PSA threshold is for each, hopefully Old Barry, or Andy62 will post they can probably remember.

Your pre-op PSA was 25 post op it was 0.04 that means the op removed about 99.84% of the cancer cells. If you post op PSA had been 2.5 we could clearly say 10% of the cancer was left and that would suggest it was in a met somewhere in your body, but in your case only 0.16% of the cancer was left in your body. Now it is an absolute certainty that if you had metastatic cancer at some point exactly 0.16% of the cancer would be metastatic, but I would say there was a higher probability that with a T3 operation that a small amount (0.16%) was left behind at the operation site. Certainly no guarantees, just reasonable probability.

Dave

User

Posted 15 Sep 2021 at 20:45

Dave many thanks.

It might be "my fault" because I was given the opportunity to choose how the RARP was performed. I opted for higher risk in return for higher probability of erectile function. I am approaching 2 years and still need chemical help, or help from a band, so I seem to have the worst of both worlds, the ED and the cancer!

At least the increase was linear and not exponential.

That said, if the linear increase continues it will mean a 0.2 score in December, and I will be trying to get a scan and treatment in peak COVID season.

User

Posted 19 Sep 2021 at 03:15

ADT is not so bad, at least with me - just a few hot flashes now and then.

User

Posted 19 Sep 2021 at 08:22

I tend to run hot at the best of times. Being in a meeting and starting to sweat sounds like hell.

User

Posted 19 Sep 2021 at 11:17

Have you actually seen an oncologist now or are you still with the urologist?

From your numbers I'm not sure there is any benefit in waiting, if your cancer is PSMA+ chances are they will spot it at 0.17 just as easily as 0.2. Get the scan done.

User

Posted 19 Sep 2021 at 12:29

Still under the urologist.

I can get a PSMA PET scan done privately. What is the situation with oncos and radiotherapy through BUPA? Does anyone know? Or is it a NHS job?

User

Posted 19 Sep 2021 at 12:42

John had his RT consultations privately but the actual zapping was on the NHS. It is possible to have RT privately; usually just means you are on the same machines as NHS patients in the same NHS clinic but you get priority for choosing appointments, etc. There are also a small number of private hospitals with their own LINACs.

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

User

Posted 19 Sep 2021 at 18:02

Get a referral to an onco as soon as possible. The Urologist should have done this as soon as the primary treatment didn't deliver a < PSA

User

Posted 19 Sep 2021 at 18:31

Some private health insurance companies offer a cash reward if their clients opt for NHS RT treatment.

Thanks Chris

User

Posted 19 Sep 2021 at 19:07

Colwickchris

As you know, City Hospital can be a PITA to get to and park at. I have also had some pretty poor care there. So I am not massively enthusiastic to go back.

All

With regard to the urologist referring me immediately:

How important is time at this stage? My original cancer was quite aggressive and my PSA was rising quickly. However, it's now rising by about 0.01 / month. Is 6 months or a year really going to have much of an impact upon outcome? I am assuming that my readings are indicative of a fairly small number of cancer cells.

User

Posted 19 Sep 2021 at 21:36

If the treatment path is clear there is nothing to be gained by waiting. These are however questions best asked of an Onco not an egotistical surgeon (most are!).

User

Posted 20 Sep 2021 at 07:14

Private RT is available at the Genesis centre next to BMI The Park Hospital although that's a bit out of the way. I had my RARP up there this summer when City weren't performing surgery.

User

Posted 20 Sep 2021 at 17:20

Originally Posted by: Online Community Member

Private RT is available at the Genesis centre next to BMI The Park Hospital although that's a bit out of the way. I had my RARP up there this summer when City weren't performing surgery.

BMI The Park is quite convenient.

Spoke to the urologist today by email. He said that at 0.2 PSMA PET is 20% effective at spotting cancer cells and improves as PSA rises. But risk increases also. Hence his recommendation for scan at 0.2.

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