I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error


The bolt from the blue which is advanced PCa... And beyond

User
Posted 27 Dec 2019 at 16:11
I think ‘re-staged’ is shorthand for ‘the staging will be assessed again in the light of the CT scan’ ... in other words, is it still a T3a. They will want to see whether the HT or chemo has led to any of the tumours shrinking.

‘Staging’ is the TNM numbers and they can change as disease progresses; someone who was N0M0 will obviously become a N0M1 if it moves to their bones or organs or to N1M0 if it spreads to distant lymph nodes, and in someone who isn’t controlled with hormones, a T2 can escape the gland and become a T3 or T4.

It is the Gleason score that doesn’t usually change.

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

User
Posted 27 Dec 2019 at 16:50

Thanks Lyn. This makes sense. He was diagnosed out of the blue less than six months ago and he had immediate HT and chemo and responded well, if the PSA is anything to go by. I think I just panicked and thought surely it hasn't got worse already? Though of course we know nothing is guaranteed. 

Mrs MAS

Edited by member 27 Dec 2019 at 16:58  | Reason: Not specified

Mrs MAS

User
Posted 28 Dec 2019 at 12:39
Regarding RT and advanced PCA it is now considered even if there are distant metastasis. This is because research has proven it to be beneficial.
User
Posted 07 Jan 2020 at 00:23

All the best for your husbands scans. My father (77, Gleason 9) has just finished his 6 rounds of chemo. Tolerated chemo well, and PSA went down from 300 to 0.4. Was also then told he would likely have radiotherapy, but radiotherapy by the Clinical Oncologist was then cancelled after CT scans showed some mets in the bone, which apparently were 'shown up' after the chemo.

We hoped for the option of radiotherapy too, but seems to be off the table now, though I will be double checking with the Snr. Oncologist when see her in mid Jan

Will follow this thread, and best wishes to you both

User
Posted 07 Jan 2020 at 09:51

Hi, sorry radiotherapy is off the table for your father. You just never know whats coming next. It hadnt crossed my mind that new bone involvement could show up so quick even after chemotherapy treatment.

Hope your mid January appointment goes well. Is your father just on hormone therapy now then? 

Mrs MAS

Mrs MAS

User
Posted 07 Jan 2020 at 22:21

Hi, we were also surprised.  He has done really well on chemo (tolerated 6 cycles with little to no side effects, and PSA down from over 300 pre chemo to 0.4 post chemo). Did so well, that he was told he would have radiotherapy.  We were told that the bone mets discovered on CT scans post chemo were not 'new' mets,  but instead were highly likely to be pre-existing (non detectable) micro-mets that are now showing up, as have been 'illuminated' by the effects of the chemo.  Mets described s tiny and scattered (more than 5 but less than 10). Were told this happens, rarely.  Difficult to get our head round this, but it seems Radiotherapy is now off the table, as would do more harm than good.  Interested to know if anyone else has experienced this (bone mets only showing up/being illuminated 'after' chemo?).  Whether worth pursuing a second opinion on the appropriateness of Radiotherapy?

Will explore this further with Oncologist next week, but expect he will now remain just on hormone therapy / Prostap until it stops working, and then I expect Abi or Enza will be the next option.  We will ask also about Xofigo (Radium 223) as I believe this is effective when there are bone mets - however I understand it can now only be administered 'after' chemo and also after Abi or Enza.  We will also ask about Apalutamide as a treatment option as my Father is 'metastatic hormone sensitive' and would like to know if Apalutamide has this license.  Interested to know others perspectives on the appropriateness of Radium 223 and Apalutamide, given my Fathers position (aged 77, Gleason 9, otherwise fit, PSA was 322 but now 0.4, but bone mets now found).  All the best to you

 

User
Posted 08 Jan 2020 at 00:05
I would hold the Radium back for future use if he isn't having any problems from the bone mets at the moment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2020 at 09:49
Hi,

Just a quick bit about bone mets discovered after chemotherapy. I was given a bone scan soon after my six sessions to 1. Give a new starting point as in this is where we are now and 2. To see if any new bone mets showed up that weren’t visible on the original scan. In fact my consultant advised me beforehand that that might be the case.

Dave

User
Posted 20 Jan 2020 at 14:19

Hi all,

I tried to put this in a new thread but keep getting an access denied message.

My husband had his last chemo on 3 December. He got through it well with a few side effects the worst being from the last session.

However he is now suffering from bowel issues (urgency and no control) a few times a week . It was not much of an issue while he was on chemo.

Did anyone else find this?

He will see his GP of course but could it just be a lingering side effect of the last cycle. Is that possible six weeks later? 

Thanks

Mrs MAS

Edited by member 24 Jan 2020 at 10:23  | Reason: Title change to reflect new question

Mrs MAS

User
Posted 26 Jan 2020 at 22:42

No my husband had the 6 sessions of chemo and never had any GI issues during or after.  Every one is different.  We were told it was a common side effect however during, but not that long after.  Do hope it clears up soon, he must be miserable with it.  So sorry!  

 

User
Posted 27 Jan 2020 at 13:57

Thanks anyway Saintpaul. It is clearing up whatever was the cause. Maybe I panicked too soon.

We spoke to our nurse over the weekend and its sounding like he will be having radiotherapy starting end March. 

We were told that even though it has spread to lymph nodes (including distant ones) it can be beneficial along with the chemo he has already had to keep the PSA low as long as possible.

Any words of wisdom or advice will be welcome. 

Edited by member 27 Jan 2020 at 17:47  | Reason: Edit

Mrs MAS

User
Posted 21 Feb 2020 at 18:45

Just an update from us. My husband has had his post chemo restaging scan and we had the appointment for results today. The lymph nodes have shrunk and his psa is 0.57 the lowest its ever been.

They were very happy with him The next step is radiotherapy. Its not yet been decided whether this will be 20 or 37 fractions and also whether to include the pelvic lymph nodes as well as the prostate. The planning session will be around end of March so I may be coming back with more questions!

 

Edited by member 21 Feb 2020 at 18:46  | Reason: Spelling

Mrs MAS

User
Posted 21 Feb 2020 at 18:59
Great news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Feb 2020 at 20:06

Great news!
Shelagh xx

 

Edited by member 21 Feb 2020 at 20:07  | Reason: Not specified

User
Posted 10 Mar 2020 at 07:10

HI all

My husband had his radiotherapy planning session yesterday.

After the good news from the scan recently we were expecting to just have the 20 sessions. They have hIm down for the 37 sessions to prostate and including lymph nodes (even though the cancer in them had shrunk).

Are we right to just feel grateful he is getting the maximum treatment (and good scan results) as this will hopefully lengthen the time prostap works for ?

Edited by member 10 Mar 2020 at 07:12  | Reason: Spelling

Mrs MAS

User
Posted 10 Mar 2020 at 15:42

It sounds like they are just making sure they hit everything including lymph nodes hence 37 sessions rather than 20. They will hit the prostate with a certain dose and the lymph nodes will be hit with a dose of radiation too.
These links might help

https://prostatecanceruk.org/prostate-information/treatments/external-beam-radiotherapy

 

Ido4

User
Posted 18 Mar 2020 at 10:17

Hi all,

My husband starts his 37 radiotherapy sessions next week. Advice at the moment from the hospital is anyone who has had their planning session will still be treated. 

Maybe I am being paranoid or maybe realistic, but just say if part way through the treatment, it has to be stopped due to the corona virus (hospital being short of room/staff etc.) can the rest of the session be postponed. Will that reduce the effectiveness of it or even would the chance to have his radiotherapy will be gone?

We had been told that for advance PCa there is an optimum time to have radiotherapy and that is now- around 3 months after finishing chemo. 

 

Edited by member 18 Mar 2020 at 11:05  | Reason: Not specified

Mrs MAS

User
Posted 18 Mar 2020 at 11:15
Giving pelvic RT to a man with PCa mets is relatively new and not available to all men in all areas of the country so there is little data on the impact of getting the full dose, let alone what the impact might be of getting half of it and then stopping - I don't think anyone will have answers to your question about effectiveness.

On the basis that if you lived elsewhere or were under a different oncologist he might not have been offered this treatment at all you could -

- clarify with the oncologist / RT team whether a break in the treatment means it can't be started up again later

- clarify whether, with advanced PCa, compromised post chemo and on HT, it is wise to be visiting a hospital every day for 7 weeks

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

User
Posted 18 Mar 2020 at 12:33

Hi Mrs MAS

Wishing your husband all the best for his radiotherapy.

Shelagh xx

User
Posted 21 Mar 2020 at 12:41

Thanks for the advice Lyn and for Shelagh for your good wishes. 

Double checked and treatment is going ahead next week. 

Shelagh, how's Rob doing?

 

Edited by member 21 Mar 2020 at 12:42  | Reason: Not specified

Mrs MAS

 
Forum Jump  
©2025 Prostate Cancer UK