Radiotherapy following Hormone treatment

I'm a little further down the track, first PSA test 500, diagnosed Gleason 8 (5+3) T3a (capsule spread) N0 M0.

They put me on Zoladex over a year ago, numbers kept falling and the offered RT.

I think the general view is to get the PSA down to shrink the prostate and so minimise the RT target area.

I still have the flushes, general aches, weight gain and muzzy thought processes.

You sound like you are on the correct path but you oncologist is the only one who really knows your situation for sure.

What's next? I'd say more jabs and then a dose of RT! You do get more used to the side effects as time goes on - honest.

Best wishes

Kevin

Hi Kevin and chums,

Diagnosed with a Gleason 7 Pca in November 2013 with a clear bone scan in the same timeframe. I am now 12 months down the line having been on Zoladex la implants at 12 week intervals. Originally Psa was 264 and has progressively dropped through 73, 23, 11 to current Psa of 6.3. The grand plan from the urologist is to continue the HT. I feel great apart from general bone aches mainly around knees particularly after golf and gardening, otherwise no serious side effects of Zoladex.

I was hoping to start RT and have requested it from consultant, but onco letter suggests RT inappropriate due to high Psa (264) at outset. I am thus confused at future treatment strategy. It appears I must present with other aches and pains to confirm mets elsewhere. It also appears CT /MRI scans not on offer for the present.

I understood the "Gold Star" treatment for Locally advanced Pca is HT followed by RT. Is anyone our there being offered only HT in similar circumstance?.

I am seeing the consultant in a couple of weeks armed with a bunch of questions.

Regards Geronimo

Well as previously mentioned, I hit the ground with a PSA count of 500 and RT was always on the cards.
I'll admit I didn't actually have RT until nine months or so had passed, the aim was to shrink the cancer and get the bugger on it's knees before giving it a blast.

But I had the RT which is the important thing.

I'd certainly ask the question why not if they are not planning to give you any RT, if you have lymph(s) spread they sometimes include that in the blast regime.

Get yourself a list of questions and start firing...

All the best

Kevin

Very surprised you have not had MRI & proper staging as a result of scan. My psa was around 250 and I had R/T three months after starting HT ( now often six month gap). Seems consultant has assumed you have widespread mets & waiting for symptoms. However, even with higher psa it could still be confined to the prostate or at least the pelvic region ( nearby lymphs). Therefore R/T could be a very useful treatment in at least knocking the problem back for years.

You may get the argument that R/T is " being saved " for pain/mets. This is surely invalid if extent ( MRI ) is unknown. In fact you had no bone mets so current info. suggests local disease is a good possibility.

Suggest you need a second opinion / talk to GP / be firm you wish to explore further action.

I'm assuming there are no medical reasons why you couldn't have R/T of course.

Kevin and Rob,

Thanks for your response, it appears specialist nurses and you both share the same view that the strategy is a bit woolly at present. I am on the case and will be a bit more pushy at my appointment on 25 November with urologist. I will report further.

Your advice and view much appreciated.

Regards Geronimo

Hi LynEyre,

Many thanks for your reply. Yes things are a bit muddled from my viewpoint. I am not aware of any medical conditions which might preclude future radiotherapy and nothing has been disclosed to me about other problems. Yes my case is discussed by an MDTeam and there has be opinions expressed by Onco's to Urologists on the team  but I am not copied in on decisions.

My concerns are that having been a year on Zoladex, the good news is that Psa has progressively dropped from 264 to 6.3, but some assumptions about PCa spread  are being made without proper investigation. I am otherwise fit apart from advertised Zoladex side effects.

I was told a year ago by my urologist  I had a "Gleason 7 Pca with a negative bone scan" and that " due to the high PSA count at outset (264) RT was inappropriate"  All blood tests  so far Ok. I have asked if my Pca has been graded and I have no info on that yet. Also there have been no further investigations into mets or spread since Jan 2014. Current plan is continue with Zoladex HT TFN.

I have asked, in view of a negative bone scan in Jan 2014, how spread to Lymph nodes and Bones might be detected without an MRI scan. I am advised;  if I present with other symptoms via my GP then issues will be dealt with then. No MRI scan is currently on offer.

I chatted with the specialist nurse on this forum, and she agreed, my PCa should be properly graded and an  MRI scan should be in the plan. Also if you look at the posts from folk on the website, there is some consensus that HT, a scan followed by RT seems a coherent plan for those with similar outlooks.

I probably need to be a bit more pushy at the next appointment, Suffice it to say, I hope to see an Onco face to face.  The issues discussed above have been raised with professionals at the NHS trust at each consultation.  In short I am hoping my treatment will become more proactive.

Many thanks, I post a note after my next appointment and all know the grand plan.

Regards Geronimo

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Hi Geronimo,

Yes, you need to be more pushy at the next appointment - most definitely.

RT should be your next step after scans,

I can't understand why you haven't seen an oncologist yet.

I too had a Gleason 7, very high PSA, T4N0M0, and started on Zoladex immediately, as you say, to shrink the tumour, and was given RT about 5 months after diagnosis.

Best thing I ever did was get out of the hands of my urologist.

I never see him now, but I do see his lovely nurses every three months for reviews.
My oncologist is the only man in charge of my treatment plans,

Good Luck,

George

A rare situation but I cannot be as emphatic as Rob and George about the wrongness of your course. If the treatment plan is being agreed by the MDT and includes the voice of the onco then I don't really see why it matters whether the onco or the uro see you at an appointment. It is your onco that has written the most recent letter and it would be rare to have routine scans more than once each year I think. A bit of me wonders whether you have perhaps missed out part of the story or forgotten tests that had been undertaken? When you had that first bone scan, was an MRI done at the same time? Or, as you have said that you had bone scans in November 2013 and Jan 2014, could one of these have actually been the MRI instead?

Perhaps I am over-optimistic or too trusting of health professionals but all my instincts are that if they have decided that RT is not appropriate, there must be a good reason for coming to this view. I hope that you get some clarity at your appointment.

Edited by member 09 Nov 2014 at 16:45  | Reason: Not specified

Many Thanks folks for your replies and thoughts,

Saw the urologist today, his view is RT would not help my Gleason 7 with spread outside the capsule. Although no mets present on the bone scan in January 2014 , He recommends continuation of Zoladex HT alone. The urologist and I are pleased PSA has progressively lowered from 264  to 6 over the last 12 months. So the plan is to continue HT alone. All frequent bloods tests are normal. I will now see him in 6 months time. We discussed the need for a Scan to detect further spread, this is  apparently not necessary at present. My wish to see an Onco Man was agreed  and that is being arranged . From the toolkit for " Locally Advanced PCA , HT alone without RT is of course an option. I hope my forthcoming Onco appointment with reassure me I am on the correct treatment regime . Updates later

Regards Geronimo

hi.geronimo,i dont know why you cant have rt,i was diagnosed last feb psa65 gleason7 t3b no mo,started on ht straight away,then 6months later had rt,finished 2months ago,still feeling stiff in hips and back,and aches and pains,just had my first psa test 7 days ago dont know results yet,but i am on ht for another 2yrs,what bugs me is loss of muscle tissue in arms legs shoulders,i do weight training but you cant get it back,just have to keep my bones strong,i am only small,it looks worse for me,i guess i will just have to put up with it,keep pressing for rt,good luck.

Hi Kev and Chums,

Latest Update following my visit to Onco Man just before Xmas.Apparantly,  I am not a candidate for radiotherapy after 13 months on Zoladex,, due to High PSA count at outset(264) and a Gleason 7 with a negative Bone Scan in January 2014.  Surprisingly, the onco man suggested other scans pointless at the moment since the PCa already outside the prostate and spread of micromets likely. Thus my therapy is to continue with 3 monthly Zoladex implants, hoping for further reductions in PSA numbers below my current score of 6.3. I have moved from 3 monthly appoints with a review in 6 months. nothing else is on offer, eg  chemo/ RT/scans  until PSA numbers start to go up. Then " we will deal with issues"

Having looked at this website and other folks with similar scores, it appears this is the therapy for this postcode.

Expecting a letter from my onco to clarify the strategy.

Regards Geronimo

Hi Grant,

I have to agree with Kevin. That's a poor decision. I wouldn't be at all happy with that.

From what you say, I am stunned that they won't give you RT.

My own diagnosis was T4 tumor, with spread into pelvic wall and floor, PSA had been 182, bone scan clear. and I was given 74Gy of radiotherapy within five months of the diagnosis, and while on Zoladex,

Now, almost 10 years later I feel sure my RT was delivered accurately and made a big difference to my outcome.

Current treatment is intermittent hormone therapy..

Perhaps you should ask to see another oncologist at another hospital?

All the best,

George

This leaves you with a huge ' What if ' to bear. Definitely time for a second opinion. I don't know how deep your pockets are but at least a private consultation with private treatment if considered useful. Might not cure certainly but could buy you extra years ?

Without adequate scanning to rule in or out , I don't see how Onco can tell how much psa was inflammation & how much was cancer produced on your diagnosis figure.

My R/T at a psa of around 250 certainly helped me.

Surgery years later bought more time when R/T had failed.

Hi Roy, Rob, Lyn, George, Kevin,

We are on same wavelength, More bloods and appointments next few week, latest letter from onco received today says, "the patient is likely to have micromastatic disease and any treatment to his prostate gland, is unlikely to be curative", Moreover " if his Psa does not rise in near future and repeat staging investigations show no evidence of Extra Prostatic disease, we could consider a local treatment to his Pca for local control"

I guess that is progress having seen top notch Onco man with this second opinion. I deduce I have to go with this, but looking at the blogs on this website, there seems to be different strategies to tackle the affliction in different postcodes. I will report further! In the meantime I feel great, getting used to Zoladex implants after 14 months on the regime and I won £9 at golf with my pals the other day,.

Thanks for your comments
Geronimo

9 July 2015

Progress; Psa Numbers have dropped to 3.9 on Zoladex La. The plan to continue with HT until Psa Numbers move Up. Some bone ache, no hot flushes, man boobs, put on 6kg in weight mainly in belly button area. Diet and exercise, more golf etc getting weight off gradually. Feel ok, but need to have a combat snooze after golf and gardening. Getting used to Zoladex and fatigue implications. Hang on in there fellows sufferers, it does get better.