T2 stage might be bumped up to T3

User

Posted 23 Feb 2022 at 08:57

Update on my situation.

Had a telephone consultation with a urologist on 1st February 2022, nearly 2 months after my biopsy (7th December 2022). He told me that I have prostate cancer, Gleason 3+4 = 7, T2 and that I needed to start HT immediately (Bicolutimide 150 mg).

I struggled with the concept of starting HT, but am now taking it . Taken 10 on consecutive days with no adverse effects so far (early days I suppose).

I had the first (face-to-face) consultation with my oncologist yesterday

As I say, I'd been told that I had a staging of Gleason 3+4, T2 (confined to prostate). However, there was a discrepancy in the MRI report which says that there is a suspicion of extension into the right seminal vesicle and the PSMA PET CT report which says that there is intense uptake in the right side of the prostate abutting the right seminal vesicle (so not actually in the seminal vesicle - my parentheses). The staging I was given, T2, was based on the PSMA scan report.

The oncologist reviewed the images with me, and said that she felt that the cancer appears to have just started to go into the right seminal vesicle on the PSMA scan. This increases the T stage From T2 to T3. If it's correct - I will have to have a longer period of radiotherapy (37 days instead of 20) and hormone treatment (3 years instead of 18 months or 2 years). She will get someone to re-evaluate the PSMA scan to see if I'm T2 or T3 and let me know, but I think it will be bumped up to T3

She was happy for me to continue to take Bicolutimide for now, which I'm happy with. Had no adverse effects up to now.

Has anyone taken Bicotumide as the only HT for RT?

My next appointment to see her will be in May when I will get a repeat flow rate test and a PSA blood test

User

Posted 26 Feb 2022 at 04:13

Originally Posted by: Online Community Member

20 (high dose) fractions are a newish treatment that seems be losing favour and my onco is talking about 37 (lower dose) fractions for Salvage therapy. When I asked about 20 v 37 and Bical V injectables he said it has standardized on 37 blasts and 2 years Bical following one of the big trials that has reported recently. Apparently that combo delivered the good results and fewer side effects.

I got the same answer when I had a second opinion so I am assuming it is correct.

The OP has not had previous radical treatment so if he has RT it will be primary rather than Salvage RT.

Regardless, I am surprised you were told there is a move away from the 20 fraction regime back to 37 fractions as more recent members to the forum seem to have had hypofractionated RT. Furthermore, the 4 major trials have shown that if anything, outcomes are slightly better with hypofractionted, and although toxicity slightly worse initially, is the same after three months and at five years. The results of the trials, which produced slightly different results, are clearly set out and summarised by NHS England. https://www.england.nhs.uk/wp-content/uploads/2017/10/clinical-policy-hypofractionated-external-beam-radiotherapy.pdf

Incidentally, reference is made within the paper on hypofractionated RT being suitable where the cancer is also in the Seminal Vesicles.

However, Oncologists sometimes differ in the way they treat, and a patient commits himself to how his consultant decides.

Barry

User

Posted 23 Feb 2022 at 23:34

If you are thinking that you might prefer to stick with bicalutimide rather than the more common route of swapping to hormone injections, has anyone offered you treatment to try to avoid breast growth? For example, either a short burst of radiotherapy to the breast buds now (it has to be done early in the treatment to be effective) or tamoxifen (which can help if you start it reasonably soon).

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

User

Posted 24 Feb 2022 at 01:24

Interesting that you were told you would have 37 fractions (sessions) of RT rather than 20, due to possible spread to Seminal vesical increasing staging to T3. The larger number of fractions used to be the norm but a study found that by reducing to 20, albeit at a higher dose each time, results were just as good and side effects overall slightly less severe. The patient obviously benefitted in attending on fewer occasions and the hospital from less setting up time for the treatment course. I was offered the opportunity to take part in the aforementioned study called CHHiP in 2007 whilst under the care of The Royal Marsdon. If you participated, you were computer randomised into the standard 37 fractions or hypofractionated arms of 20 or19 fractions. So my being staged at T3A did not preclude the possibility of me of being drawn in one of the hypofractionated arms, (the 20 one having since become more frequently adopted over the years). Maybe there is a particular reason why spread to Seminal Vesical makes a difference to being in the process of breaking out of the Prostate but I have not heard of this affecting the number of fractions, so as a learning point would be interested to know of your Oncologist if this or another reason for this and whether this is her idea or is accepted practice now, assuming you get the opportunity to ask her.

I originally had a short course of cipro acetate to counteract 'flare' prior to starting Zoladex injections. More recently, I was prescribed Bicalutimide as a precursor to resuming Zoladex, so perhaps this is a more modern approach. As Lyn says, some men just continue with Bicalutimide rather than change. What is decided may well depend on what your Oncologist favours in your situation and how you respond. As you may be aware, men experience different effects with HT, both in type and severity. So no certainty you will be affected in same way as any member only on Bicalutimide. A particularly bad reaction may lead to a different form of HT being tried. You should feel free to discuss with your Oncologist regardless.

Edited by member 24 Feb 2022 at 01:27 | Reason: Not specified

Barry

User

Posted 24 Feb 2022 at 04:21

Originally Posted by: Online Community Member

I was in a similar situation with a suspicion that there might have been an extension into a seminal vesicle upping the treatment from 30 fractions to 45 fractions over 66 days. While the shorter treatment is used more commonly by my oncologist he felt that reverting to the long form was better for me. [Gleason 9, locally advanced]

Jules

User

Posted 24 Feb 2022 at 04:52

I was on bicalutimide as a primary HT. Have you been prescribed tamoxifen to counteract breast growth? If not, make sure that you are ASAP.

Best wishes,

Chris

User

Posted 25 Feb 2022 at 00:54

Nigel, those initial consultations can seem rushed but equally, it's hard to know what to ask before you get into the treatment stage. Once you start treatment, there seem to be plenty of questions you could have asked before but you will probably be able to find the answers to most of them here. Given you don't have a choice between a prostatectomy and RT one of the big questions is answered for you.

Originally Posted by: Online Community Member

I don't know anything about RT planning, but I think the extra sessions are to treat that region just outside the prostate.

If you have your treatment with a Linac machine I would expect that the seminal vesicle region will be treated each time you have RT. I believe the extra treatments are used because you're cancer is rated a higher risk for spreading.

You've got a few months ahead of you before RT so, if you can, work on your fitness and diet. ADT and RT do knock back fitness levels which can be frustrating but if you can pick up some "momentum" beforehand it will help carry you through the RT.

Above the age of 60 most people need more protein in their diet. Above 60 AND being treated with ADT this becomes even more important. Recommended daily protein levels rise from the normal requirement of about .8 gm per kilo of body weight per day to between 1.2 and 2 gm per kilo of body weight per day. Do the math and this adds up to a lot of fish, meat or nuts etc so a simple protein supplement can help a lot. I didn't pick up on this until some time after RT and I'm certain that lack of protein was the cause of a fair amount of fatigue for me.

Alternative treatments are always attractive but HT and RT are well proven and RT particularly, is always being tweeked and improved so it's a perfectly good no. 1 choice.

Jules

User

Posted 25 Feb 2022 at 14:48

User

Posted 26 Feb 2022 at 13:57

Just to complicate things, there are also two types of extension into the seminal vesicles ... evidence of cancer in the SVs dangling outside the prostate gland (T3) and evidence of cancer cells in the area of SVs inside the prostate (T2), the root of each SV joining the ejaculatory duct inside the prostate and then extending out (like your ears are outside your head but the ear canal reaches inside). It seems your MRI indicated T3 (evidence of cancer in the SV) and the PET scan indicated T2 (around the area where the SVs meet the ejaculatory duct inside the gland)? Either way, I think if you were my brother or father, I would want you to be treated as high risk rather than intermediate risk.

As you have picked up, there is very little evidence now to suggest that 3 years of HT is beneficial but in all honesty, it might be better to agree to it at the start and then have a conversation about stopping at 18 months once you have a year or so of stable low PSA under your belt. A number of members here have been able to negotiate an early halt to HT once they were in the midst.

Edited by member 26 Feb 2022 at 15:01 | Reason: Not specified

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

User

Posted 26 Feb 2022 at 20:58

Originally Posted by: Online Community Member

but today, after 14 tablets, I'm feeling a bit anxious and shaky with some muscle spasms in my legs

Others have reported the leg spasms and I had a similar experience on Zoladex, so it seems to be a "normal" side effect. My GP told me I was mistaken to think there was any connection but this sort of detail is often beyond the experience of that level of medical wisdom. The anxiety and shakiness will probably diminish as your system gets used to the change.

Maybe we should have a specific thread on exercise and ADT. Loss of testosterone does some very strange things to our ability to exert ourselves but staying fit is acknowledged as making a significant difference in both long term health and even survival.

Jules

User

Posted 27 Feb 2022 at 22:34

I won't comment on the moobs here as you've got another thread that's dealing with it. I've got to admit that at this stage I feel as though I look like a sack of potatoes relative to before PCa but at 74 I'm a bit "what the hell" on that for now as my health is otherwise excellent

As far as diet and keeping fit go, there's not much specific info available and most of it simply suggests the sort of normal healthy diet we're all well acquainted with. The difficulty with that, is that it's very easy to gain weight and at the same time lose muscle on a normal balanced diet. Andy has posted some useful experience on this, including the measurements from a body scanner, suggesting that your body can actually burn up muscle rather than fat to produce energy. You will probably find you need to keep the carbs down and the protein up, while still eating the mandatory fruit and veg. I'm speaking from Zoladex experience so Bical. might be slightly different.

ADT can effect mood but that varies widely, so it's hard to say what you might experience. The whole thing is a sort of mind battle as much as anything else. Initially I found the loss of physical ability slightly frustrating but after getting a feel for the rather different way things were working, it's become an interesting challenge to build up again. Beyond three years ADT can have undesirable side effects but you shouldn't be in that situation. To prevent loss of bone mass calcium supplements and gym work are recommended but again just keeping active is probably the best medicine.

Jules

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User

Posted 23 Feb 2022 at 23:34

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

User

Posted 24 Feb 2022 at 01:24

Edited by member 24 Feb 2022 at 01:27 | Reason: Not specified

Barry

User

Posted 24 Feb 2022 at 04:21

Originally Posted by: Online Community Member

Jules

User

Posted 24 Feb 2022 at 04:52

I was on bicalutimide as a primary HT. Have you been prescribed tamoxifen to counteract breast growth? If not, make sure that you are ASAP.

Best wishes,

Chris

User

Posted 24 Feb 2022 at 18:49

Hi Lyn, Barry, Jules and Chris

Thanks very much to you all

I felt that the consultation was rushed. It started an hour and a half late, which didn't help.

My consultant had a matter of fact, business-like manner, which perhaps I need, but I was expecting the session to be a bit more relaxed, centred around my thoughts and feelings

I did find it a bit odd that she very much put the ball in my court when it came to choice of HT. I really needed her to almost make the choice for me by recommending something and telling me the pros and cons of each, which didn't happen. I was not offered Tamoxifen or RT to prevent moobs if I continue on Bicalutimide (took my 12th tablet today). Started to notice some effects - lost the hairs on my lower legs for instance, but no moobs yet. How did you come to a decision to take Bicalutimide as your HT, Chris? I must admit that I prefer the idea of taking an oral medication, so that was my primary reason for sticking with it. That and the fact that I've not had any adverse effects yet.

I think, if the injections option is less likely to give me moobs then I'll consider that. I'll continue to take the Bicalutimide for now and contact the team when I get close to using up the 28 tablets I have. She gave me a prescription for another month's worth, but I'm sure I can switch to injections if I want to. Stop press: the hospital pharmacy has just called me and they are going to post the prescription to me. I can always take them back if I don't use them

I don't know anything about RT planning, but I think the extra sessions are to treat that region just outside the prostate.

Obviously disappointed - I was hoping for 20 RT sessions and 2 years or 18 months of HT, but if that's not going to be enough then I feel I have to do what she advises. However, there is still a slim chance that whoever reviews the PSMA scan will agree that it's close to, but not actually in the seminal vesicle

Clinical trials for treatments like HIFU and Cryotherapy are out as she said that they were only available to T2 stage patients

I am just starting along the treatment journey. I have not had any RT yet, that would be a few months away, so in the months leading up to the RT maybe I could get a second opinion. Seems to me unlikely that another oncologist would treat T3 stage any differently though.

Nigel

User

Posted 25 Feb 2022 at 00:54

Originally Posted by: Online Community Member

I don't know anything about RT planning, but I think the extra sessions are to treat that region just outside the prostate.

Alternative treatments are always attractive but HT and RT are well proven and RT particularly, is always being tweeked and improved so it's a perfectly good no. 1 choice.

Jules

User

Posted 25 Feb 2022 at 14:48

User

Posted 25 Feb 2022 at 23:18

Thanks, Jules

"Given you don't have a choice between a prostatectomy and RT one of the big questions is answered for you."

True. Because of a big right common iliac artery aneurysm, surgery is off the table, so I have to go down the RT/ HT route

"I believe the extra treatments are used because your cancer is rated a higher risk for spreading."

I guess so. Once the cancer has escaped the prostate, it will change the treatment. Disappointed with it, but I just have to accept it and get on with it

Thanks for the dietary and fitness advice. I haven't received any information regarding either from my oncology team yet, so that's very helpful

I like to cycle, although I have not been on a long ride for a few weeks. I will try to get out on my bike more now that spring is coming

"HT and RT are well proven and RT particularly, is always being tweaked and improved so it's a perfectly good no. 1 choice."

This is very heartening. Obviously, I'd like to minimise the collateral damage of the radiation to the bowels and bladder, so new techniques for targeting the radiation accurately would be appreciated. I will be treated at Guys Hospital, London, so, with luck, they'll have state-of-the-art equipment there.

Nigel

User

Posted 25 Feb 2022 at 23:32

Thanks, francij1

This makes me feel I'm in safe hands and that the treatment planned for me is correct.

Encouraging to hear that "37 blasts and 2 years Bical combo delivered good results and fewer side effects" in a clinical trial.

With luck I'll be able to come off HT after 2 years instead of 3 if things work out OK

Nigel

User

Posted 26 Feb 2022 at 04:13

Originally Posted by: Online Community Member

The OP has not had previous radical treatment so if he has RT it will be primary rather than Salvage RT.

Incidentally, reference is made within the paper on hypofractionated RT being suitable where the cancer is also in the Seminal Vesicles.

However, Oncologists sometimes differ in the way they treat, and a patient commits himself to how his consultant decides.

Barry

User

Posted 26 Feb 2022 at 11:54

Thanks very much, Barry.

From the HFRT clinical policy document:

Localised Prostate Cancer - is defined as disease which is confined to the prostate
gland and immediate surrounding area including the seminal vesicles.

Intermediate risk localised prostate cancer – is unlikely to grow or spread for a few
years and generally is diagnosed where one or more of the following factors is
present:
> PSA level between 10 and 20 ng/ml
> Gleason score of 7;
> T stage of T2b and T2c (National Comprehensive Cancer Network 2016)

High risk localised prostate cancer – may grow or spread within a few years and
generally is diagnosed where any one of the following factors is present:
> PSA level higher than 20 ng/ml;
> Gleason score between 8 and 10; and
> T stage of equal to or greater than T3 (National Comprehensive Cancer Network 2016)

and

Eligibility Criteria

Patients meeting the following criteria should be considered for hypofractionated
radiotherapy (HFRT):

1. Low risk localised prostate cancer which is suitable for treatment with
external beam radiotherapy rather than active surveillance, brachytherapy or
radical prostatectomy.
2. Intermediate risk localised prostate cancer which is suitable for treatment with
external beam radiotherapy rather than radical prostatectomy or brachytherapy.
3. High risk localised prostate cancer where the target volume is limited to the
prostate and seminal vesicles.

From Cancer Research UK

T2
> T2 means the cancer is completely inside the prostate gland. It’s divided into T2a, T2b and T2c.
> T2a means the cancer is in only half of one side of the prostate gland.
> T2b means the cancer is in more than half of one side of the prostate gland, but not both sides.
> T2c means the cancer is in both sides but is still inside the prostate gland.

T3
> T3 means the cancer has broken through the capsule (covering) of the prostate gland. It’s divided into T3a and T3b.
> T3a means the cancer has broken through the capsule (covering) of the prostate gland.
> T3b means the cancer has spread into the tubes that carry semen (seminal vesicles).

I seem to have some of the criteria for intermediate risk localised prostate cancer - (T2a or (?T2b) (Right side only)), Gleason 7, PSA = <20 (Nov 11th 2021). Yet the fact that it looks like it's spread to the seminal vesicle on the right means that my diagnosis is now high risk localised prostate cancer (T3b).

Yes, maybe HFRT might be possible for me as "Evidence from the CHHiP trial shows that treatment of the prostate with seminal vesicles is safe and effective at 60Gy/20. The PROFIT trial has used the same HFRT schedule as CHHiP and results further demonstrate non-inferiority compared to CFRT (conventional fractionated radiotherapy)."

Certainly something I will take up with my consultant before I sign up to anything.

Nigel

User

Posted 26 Feb 2022 at 13:57

Edited by member 26 Feb 2022 at 15:01 | Reason: Not specified

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

User

Posted 26 Feb 2022 at 14:50

Thanks, Lyn

After the initial disappointment, I have accepted that it's best to treat it as T3, so I will go with the flow. Worried about the risk of collateral damage to the rectum associated with RT directed to zap the SV as well as the prostate, but I'll have to cross that bridge when I come to it. I think my onco mentioned that I would get some sessions of VMAT to more precisely target the SV, so that might help.

Thanks for the info re: possibility of ending HT early provided PSA levels allow. I'd dearly love to get my gonads back as soon as possible

Up to now I thought I'd only had minor side effects from the Bica, but today, after 14 tablets, I'm feeling a bit anxious and shaky with some muscle spasms in my legs. Might have nothing to do with the Bica of course, but I'll keep an eye on that and report it if it gets any worse.

I've got another appointment to see the onco on 31st of May. My waterworks aren't feeling as sore, so my feeling is that the Bica is having an effect on the cancer, which will hopefully mean that my PSA will be moving in the right direction by then.

Nigel

User

Posted 26 Feb 2022 at 20:58

Originally Posted by: Online Community Member

but today, after 14 tablets, I'm feeling a bit anxious and shaky with some muscle spasms in my legs

Jules

User

Posted 27 Feb 2022 at 11:39

Thanks, Jules

I do feel a bit better today, so perhaps it was just a blip.

Over the last few days, I've noticed a change in my sense of taste. Could this be a side-effect?

One positive effect has been that I poo less frequently and my poo has firmed up

Agree that the medics should provide a better package of advice on diet and exercise for those on HT. I've had absolutely none, which I think is pretty poor. I have got the Toolkit from PCUK, which has advice on lifestyle, but what about those who are not internet savvy? I'm sure you're right - keeping fit and a healthy diet surely do improve your survival chances.

Also, no one has sat me down to explain how ADT works and the potential side effects. If the majority are going to develop moobs, then mitigation should be in place at the start. I wasn't even told that it might happen or who to contact if it did (although I do have the contact details of the onco nurse specialists now)

Nigel

User

Posted 27 Feb 2022 at 22:34

User

Posted 28 Feb 2022 at 00:36

Jules, I really must thank you for your detailed posts in answer to my questions

Difficult to weigh up whether I can keep taking Bica for 36 months, or perhaps injections might be better. I can see advantages to not having to remember to take a pill every day - you can just go in every few weeks and forget about it. However, I do baulk at the idea of chemical castration, but I'm open to arguments in favour of injections

I haven't had any contact with the vascular doctors to discuss my aneurysm. I don't know where I stand when it comes to exercise, but I suppose the best thing to do is not to strain it by overstretching myself. I went for a gentle 15 mile jaunt on my bike this afternoon, I'm sure that it would be OK.

I am not an athletic build - I'm 105 kg so "sack of potatoes" would describe me too. Even so, I don't think I'm unfit, This time last year I went out for long 30-40 mile rides most days

I'll try to cut down on the carbs and eat more protein. I've got a good working knowledge of nutrition so I know which foods are good for me

Nigel

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