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109 days after 2nd mpMRI, finally, a result!

User
Posted 08 Jan 2020 at 22:10

Well here we go again. Since November 2017 I have had PC. I was on AS since then and following 1 DRE, 2 mpMRI's and 2 biopsies, I think they have finally decided what to do with me! Biopsy 1st June 2019 showed that I possibly needed some treatment. My consultant was on holiday for a month, so his registrar saw me and said "Oh you'll probably need a prostatectomy now". When I finally got to see my Uro, he said "Oh no, just a little bit of Brachytherapy should do it" Anyway, up went my 3-monthly PSA's, from 7.0 to 7.5 to 9.0 just before Christmas. The MRI on 21st. September happened and I heard nothing from then until today, 8th. January 2020! So NOW (due to the cancer growing out of the side of the prostate, but not into any lymph nodes yet), the brachytherapy has been swept off the table and replaced with full EBRT. My results in Nov. 2019 were 3+4 (7) and I think the ones this year were the same, although, unlike some people I have heard of, being on AS for years, I now need this treatment.


My Uro said (when pressured), that he'll get me an appointment soon with an Oncologist. But I won't get my hopes up, as nothing at the NNUH (Norwich), seemingly gets done quickly and nor do they like to reveal more than just basic results, for some strange reason (unless that's just him?) My partner doesn't really want to lose me just yet and said so to the Uro. I just hope he does something soon, so that she won't have to! (She is a wheelchair user and I her full-time carer, so without me, she would probably have to go into a residential home at less than 60!) I am more than frustrated at all these delays. A Macmillan nurse said that results should take no later than 62 days and not the 109 that I have had to wait. I truly believe that my treatment options have probably changed due to all the holdups. However, I would love to know what you all think? (Regarding choices. Should I have this RT? Or maybe opt for a prostatectomy?) I am fully versed in all the procedures and side-effects related to Brachytherapy, but now have to do an awful lot more reading regarding the same with EBRT!

User
Posted 09 Jan 2020 at 15:40
No the opposite is true. The HT controls and weakens the cancer so that the RT is more effective at killing it, the HT also shrinks the tumour so the target area is smaller and there is less risk of surrounding tissue needing to be included in the zapping zone. The standard is usually 3 or 6 months of HT before RT (if the man is having HT) but the research has persuaded some oncos to recommend 9 months of HT where possible. Like everything else, it is a bit postcode lottery and a bit onco personal preference. You can't know until you actually see him or her.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jan 2020 at 11:05

Originally Posted by: Online Community Member
Breast growth is a common side-effect of some types of HT, particularly if you're put on bicalutimide. To counter it, you can either take a small dose of Tamoxifen (whose main use is as a breast cancer drug) or have a dose of radiation to the breast buds.

Best wishes,

Chris


... if the CCG in your area allows it :-/ 


 


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Jan 2020 at 16:14

The micro-enema used for RT prep is (as its name suggests!) small. Perhaps 1-2cc of fluid. Its purpose is only to make sure that the very end of the bowel is empty.


Cheers,


Chris

Edited by member 13 Jan 2020 at 16:15  | Reason: Not specified

User
Posted 17 Jan 2020 at 16:17
Nothing is likely to change between now and Feb 18th and it is certainly within the 62 day target your nurse mentioned!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 08 Jan 2020 at 23:34
RT generally doesn't have many side-effects, Ross - it's the accompanying HT that gives you those, and they vary drastically from person to person. I had EBRT in Feb and Mar last year: 30 fractions, so 6 weeks Mon-Fri. In the last couple of weeks of treatment I had some bladder irritation from the radiation (stinging while peeing) and an increased frequency (having to pee every 45m all night, which was pretty exhausting) but these quickly wore off after RT ended.

Note that you're likely to be on HT for three or six months before you start RT, so don't expect any instant action!

Best wishes,

Chris
User
Posted 08 Jan 2020 at 23:49
That's shocking Ross. Do you have the energy to complain to PALS at the hospital? From what you are saying here, in the time that you were on AS and had a change of circumstances that led to further assessment your cancer has progressed from a T1 or T2 to a T3 (escaped the gland) and your treatment options have been seriously diminished.

If you were my brother / uncle / mate, I would be marching you to the GP to request a referral to an oncology department in another hospital; I think I would have lost faith in the current one.

It seems from what you are saying that it is now probably too late for surgery anyway. On the up side, as a full time carer, you are almost certainly better having the RT / HT combo as it will impact less on your ability to care for your partner. When you get to see an oncologist, you can ask things like 'I am a full time carer so can I have 20 fractions at a slightly higher dose rather than 37 fractions (days)?' or 'as a carer, is it possible to have my RT in the summer when it will be easier to get support for my partner while I am at appointments?' and 'as a carer, would it be possible to book all my appointments for about the same time of day so that I can liaise with social services (or friends and neighbours) about house sitters, care assistants, etc?' Depending on how far away you live from the hospital and whether or not you drive, you might only be out of the house for a short time each day as the actual zapping doesn't take very long.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jan 2020 at 00:39

Thanks for your quick reply both of you! Chris, what you say reminds me of when I first had prostate trouble. Even though I was on Tamsulosin (which made me feel very ill or drunk!) I had a slow flow and had to visit the loo 3-4 times a night! My Uro didn't even mention HT at all, just EBRT and he said I would probably need to have treatment every day for two months! (excluding weekends).


Lyn, I think I'm scared of complaining now as, when I needed some treatment from an ENT department some years ago, they cancelled my appointment on the day it was due and I was already at the hospital, so I was rescheduled for six months later! I complained and got my treatment within one month. The treatment I received though, was haphazard and extremely painful, leaving me with violent vertigo for about ten minutes! (imagine sitting in a plane spiralling wildly towards the ground). I'm sure they can't have meant it to be so bad, but I still believe that was done out of spite of my complaint about them! I eventually had to have the treatment undone as it made me very ill and I still suffer with the original problem today!


Although yes, maybe I will take it up with PALS, though probably after I have seen the Oncologist at least. I believe that these delays may have made things worse and probably prevented me from just having a single course of Brachy, which would have been a lot simpler. I cannot imagine that any other hospital would want to touch me though, if I did as you suggest and asked for a referral to another one. Or is that quite normal?


I like the sound of only 20 fractions, though I'd like to get them done ASAP. We have two ladies who help with care for a few hours a week, giving me a bit of a break and I'm sure they wouldn't mind helping out more now, rather than in the summer, when they are busy with their own families. I am about 17 miles away from the hospital, but over an awkward route, meaning probably being away from home for a minimum of three hours a day and maybe a lot more, but the same time of day thing I like the sound of. Reading what some others have said, they seem to have had lots of problems (bleeding, leakages, incontinence etc,) and I wonder if a higher dose would be suitable due to that? Someone said they had to have a CT scan before each RT treatment and had to keep a full bladder, which I'm not very good at. Is that just them? Or do we all have to go through that same thing?


Once again, many thanks to you both for such good advice and information!

User
Posted 09 Jan 2020 at 02:35
Full bladder is routine for EBRT. Some hospitals do scans before each session but others only scan once a week and it takes seconds. In most hospitals, you have tiny tattoos or gold markers inserted in the prostate and they line the machine up with them. Not everyone has problems with their bowels etc. John used to get to hospital about 8.15, he drank his water on the way, his appointment was at 8.30 and on most days he was dressed and driving to work by 9am. It doesn't work that smoothly everywhere.

The research suggests that the higher dose over fewer fractions actually leads to less side effects.

You are allowed to request a referral to any oncologist, it is called patient choice. But if the nearest hospital is 17 miles away and you need someone to sit with your wife while you are gone, perhaps a referral to a hospital even further away is not the best idea? It is only guesswork right now anyway but if the onco did want you to have HT first, the longer you are on it before the RT the better so maybe with a referral now you would be able to have the RT next Autumn. It might even be that when you see the onco s/he still recommends brachytherapy; don't assume it is off the table just because the uro says it is.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Jan 2020 at 07:20
Not a full bladder as such, Ross, but a measured amount of water to lift the bladder away from the prostate to minimise radiation damage. In my case, the procedure was to empty my bladder 20m before my treatment, and then quickly drink 3 cups of water. I also had to use a micro-enema to empty the lower bowel, too. You quickly get into the routine of it and it's surprising how quickly the treatment goes by.

The EBRT machine has a built-in scanner that they use to make sure everything is OK at the start of each treatment. It's very quick - you're in and out of the machine room in well under 10m.

Best wishes,

Chris
User
Posted 09 Jan 2020 at 14:17

Once again, many thanks to you both! That certainly gives me a lot to think about and a lot of 'ammunition' to shoot at the oncologist when I see him/her. I like what you say about the three cups of water only Chris and the 'micro enema'. Last time I got an enema, it was just a large, long tube of water and no possible way of inserting it! I think my partner had one of the ones you mention. Something called 'micralax' if I remember rightly. Built in scanner? Oh that's good. Having had another MRI, I imagined something similar every day! And Lyn, less side effects? Oh yes please! I also like the sound of delaying RT with HT, but won't that also give the cancer just that bit longer to grow even bigger and maybe into the lymph nodes? I don't suppose it will, but I'm trying to grab as much info as I can ASAP, because I'm banking on the Uro now actually DOING something very soon. At least I hope so! Thanks again! 😀

User
Posted 09 Jan 2020 at 15:40
No the opposite is true. The HT controls and weakens the cancer so that the RT is more effective at killing it, the HT also shrinks the tumour so the target area is smaller and there is less risk of surrounding tissue needing to be included in the zapping zone. The standard is usually 3 or 6 months of HT before RT (if the man is having HT) but the research has persuaded some oncos to recommend 9 months of HT where possible. Like everything else, it is a bit postcode lottery and a bit onco personal preference. You can't know until you actually see him or her.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jan 2020 at 03:41

My partner wonders if it's the same type of HT that women get, as she doesn't want me to have a bigger chest than her!

User
Posted 12 Jan 2020 at 08:29
Breast growth is a common side-effect of some types of HT, particularly if you're put on bicalutimide. To counter it, you can either take a small dose of Tamoxifen (whose main use is as a breast cancer drug) or have a dose of radiation to the breast buds.

Best wishes,

Chris
User
Posted 12 Jan 2020 at 08:30
Hi
, Tony is having HT at the moment and what Cheshire Chris says is right, you to have HT before you start the RT (not sure how long before but think its 3 months) then you have the micro enema and water to make sure lower bowel is empty and the water to make sure everything is in the same place for each treatment. Tony has not had any rea problems with the RT and next week is his final week.

regards barbara
User
Posted 12 Jan 2020 at 11:05

Originally Posted by: Online Community Member
Breast growth is a common side-effect of some types of HT, particularly if you're put on bicalutimide. To counter it, you can either take a small dose of Tamoxifen (whose main use is as a breast cancer drug) or have a dose of radiation to the breast buds.

Best wishes,

Chris


... if the CCG in your area allows it :-/ 


 


 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jan 2020 at 11:07
Not everyone has the daily enemas
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jan 2020 at 11:42

Tamoxifen is an extremely cheap drug. It would be difficult to understand why anyone would be refused it, although I wasn’t actually offered it. My oncologist immediately agreed when I asked for it, though. Always a good idea to do your research.


Cheers,


Chris

User
Posted 12 Jan 2020 at 13:28
Neither tamoxifen nor RT to the breast buds are available on the NHS in our area, according to the CCG. I presume on principle rather than cost.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 12 Jan 2020 at 14:41

That's difficult to understand, when Tamoxifen is so cheap, and breast growth is something that some men find rather distressing. I’ve had both Tamoxifen and breast-bud RT, as you know.

Edited by member 12 Jan 2020 at 16:36  | Reason: Not specified

User
Posted 13 Jan 2020 at 16:06

Well that's an awful lot to think about right there! But thank you all anyway. I had heard that Tamoxifen is really expensive? I hope to NOT have daily enemas, as they do funny things to me. But some would be acceptable. Good news is I should hear from my Onc, in the next couple of days. Seems that they must be feeling guilty for just forgetting about me! I will keep you posted. Funny thing, this morning I had an email, just one of those adverts that we all get. It asked me if I had small breasts and wanted to do something about it! Well it looks like that may be happening without their help anyway!

User
Posted 13 Jan 2020 at 16:14

The micro-enema used for RT prep is (as its name suggests!) small. Perhaps 1-2cc of fluid. Its purpose is only to make sure that the very end of the bowel is empty.


Cheers,


Chris

Edited by member 13 Jan 2020 at 16:15  | Reason: Not specified

User
Posted 13 Jan 2020 at 16:52

Originally Posted by: Online Community Member
No the opposite is true. The HT controls and weakens the cancer so that the RT is more effective at killing it, the HT also shrinks the tumour so the target area is smaller and there is less risk of surrounding tissue needing to be included in the zapping zone. The standard is usually 3 or 6 months of HT before RT (if the man is having HT) but the research has persuaded some oncos to recommend 9 months of HT where possible. Like everything else, it is a bit postcode lottery and a bit onco personal preference. You can't know until you actually see him or her.


I don't think shrinking the tumour is required for external beam RT - whatever the prostate size, it's in contact with rectum and bladder and pelvic floor. (It is required in some cases for brachytherapy.)


There is research suggesting the PSA at start of RT has an influence on outcomes, and impacts the justification of HT after RT. I looked at two papers that found if you can get your pre-RT PSA down to 0.1, this improved outcomes in some ways. I delayed my RT by 2 months in order to do this. However, it's important not to delay your RT unless your PSA is coming down at a good rate. My onco had had a couple of patients try that before, and they never got there before it started going up again, and you don't want to delay RT until PSA is rising - you've kind of blown the reason for being on HT if that happens.


I suspect best time to have RT is when HT has pulled PSA low and it's still going down at a reasonable rate. That requires more monitoring than is currently done (in my case, I did that myself), and so the broad brush 3 months or 6 months is most often used instead.


Originally Posted by: Online Community Member
I had heard that Tamoxifen is really expensive?


20mg tablets are very cheap. When I looked a while back, all other tablet sizes were about 40x the price. Dose for breast growth avoidance is usually 2 x 20mg/week, but dose can be increased up to 20mg/day if needed. You must have periodic liver function tests if you are on it, to make sure it's not giving you non-alcoholic fatty liver disease. My consultant and GP were both happy for me to set my own dose according to symptoms so I can minimise the dose, as my liver is not overly keen on it. I managed to stop it completely for 8 months when I switched from bicalutamide to Zoladex, but just had to go back on to 2 x 20mg/week.

User
Posted 13 Jan 2020 at 18:15

There have been cases - including on this forum where men have been told that HT had to reduce their PSA to a certain figure before they could have their RT.

Edited by member 13 Jan 2020 at 18:17  | Reason: Not specified

Barry
User
Posted 13 Jan 2020 at 18:16

Thanks Andy! That's a good lot of info for me to digest. I'm one of those people who, if there are side-effects to be had, I usually get them! So I hope HT tablets don't come with that. My PSA is 9 at the moment, so will probably take a while, though I've heard that PSA is not a very good judge of where your PC is at. Yet people seem to use it as an important reading AFTER a Prostectomy. Please excuse my ignorance on the subject. I suppose it must be more important than people think? Like I said though, my Uro never even mentioned the HT, so hopefully, seeing my Onc in the next week? 2? 3? will put me in the picture a bit more.

User
Posted 17 Jan 2020 at 14:05

I've now got my first appointment with my Oncologist, it's for Feb. 18th. Some people are telling me that's too long to wait and I should go private. I would have thought it's not that long (one month to go), unless anyone thinks that is a bit long? Although I'm only a 3+4 and was on AS for over two years, the cancer does seem to be growing a bit faster than it should. Makes me wonder if they got my score right in the first place? Be interesting to know what others think about the wait for the appointment?

User
Posted 17 Jan 2020 at 16:17
Nothing is likely to change between now and Feb 18th and it is certainly within the 62 day target your nurse mentioned!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
 
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