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Dad newly diagnosed

User
Posted 14 Jul 2019 at 16:55

Hi all

This is my first post although I have been reading for a while now.  I'm looking for a little advice for my dad's first appointment with the specialist this coming week please. Having read lot's on here and other sites till I'm sending myself dizzy, I'm hoping someone will he able to help.

A bit of background info.  Dad diagnosed out of the blue following a urology visit for something minor.  Doc examined him didn't like what he could feel and then it snow balled.  Had his biopsy which caused infection ended up in a&e left with antibiotics.  3 days later took ill again more antibiotics.  Half way through took ill again, ended up in a & e with Sepsis so had a rough few weeks and just finishing antibiotics.  So on to pc  Gleason 4+4= 8 PSA 145 stage T3a no local spread .  Lymphs clear but bone scan shows suspicious shadows on ribs and ct scan carried out to verify so presuming advanced with mets.  He started bicalutamide and has had his first monthly prostap injection last Tuesday.  We'll get the ct scan results at the appointment on Wednesday.  The nurse has said depending on ct scan depends whether treatment will be rt or chemo.  What would make the decision please?  I've read that early chemo gives a better outcome long term - is this correct?  Why would rt come first?  Is there any other things that we need to clarify at the meeting please?

Thank you

Jackie 

 

User
Posted 14 Jul 2019 at 19:17

Hello Jackie,

Sorry you find yourself here.

There are two significantly different treatment paths, and that depends if they think the cancer is curable, or if it will have to be managed lifelong. Until you have the results of the bone scan back, you won't know which path, although it does sound like there's a significant chance it's going to be something that needs managing lifelong. Incidentally, although I used the word curable, it's generally regarded that PCa is not curable (in common with most other cancers), but curable means you end up in remission until you die naturally of something unrelated.

The conventional treatment path for curable T3a PCa would be Hormone Therapy (HT) and RT. The conventional path for lifelong management would be HT and chemo, usually later on.

You are right in that research has shown chemo can work better on both paths when used earlier - basically, throwing everything at it at once. This isn't universally done though - it's quite new, and depends heavily on the health of the patient, quality of life considerations, etc. I suspect the nurse is broadly referring to chemo for lifelong management, versus radical RT for treatment with curative intent. Radical RT would not be used unless it is thought to be curative, as it would give all the side effects and no benefits - it's to prevent spread before it starts. The finer details of the treatment will be decided by an oncologist, not the nurse though.

Wishing you and your dad all the best.

Meanwhile, you might want to prepare for the appointment by writing a list of questions, and being reading to write down what the consultant tells you. You may well get more than one treatment option to chose between, which you need to go away and think about, and of course ask for opinions here if we can help.

User
Posted 15 Jul 2019 at 16:44

Thanks Andy

I thought I had responded but cant see my response on the thread.  I'll look at the link and update after Wednesday when we know a bit more info.  He has his next jab early August and that's only the 2nd so presumably there will be at least 1 more and gives us time to look at and research treatment options.

Jackie

User
Posted 22 Jul 2019 at 14:03

(Hi Jackie 

As someone who as been through the full gambit of treatment I hope you find this helps with your decision process. I was diagnosed with prostate cancer in 2011 at the age of 65. I had gleeson index of 9 after a biopsy. Psa 15.Started on 3monthly zoladex implant (still on to date) .2012 had 39 sessions of radiotherapy with no side effects. But did not get all cancer so back on hormone treatment. Psa climbed to 60 so went onto Stillbestrol,predicted to last 2 years ,which it did bringing Psa down to 8.  When Psa started to climb again reaching63 then started on Enzalutamide a very powerful drug which affected appetite and caused some nausea. It worked for a year then Psa started up again,so next step August 2018 chemotherapy (docataxel)  !side effects not too bad poor appetite,slight nausea,very tired no energy . And damage the the nerve ends in my lower legs(which persists to date) Had 5 of 6 predicted sessions as heart rate and Bp was too high for no 6.  My oncologist offered me a different chemotherapy ie Cabataxel and Radium 223 for the bone cancers, which we are still thinking about as he thinks the chemotherapy is a risk for small returns. As for the radium 223 the jury is still out as of yet I have very little on no bone pain. 

At present I am now under palliative care with Macmillan nurses,district nurse and Gp. Only symptoms present are the nerve damage to legs from chemotherapy and total lack of energy and fatigue (which am told not unusual).

good luck stay positive 

Mike 

User
Posted 22 Jul 2019 at 18:41

Hi Mike

Thank you for the info.  My dad's high PSA 145 and suspicious rib area on bone scan suggests it's metastatic but unfortunately, despite having an appointment to look at treatment plan,  the results weren't available and so we're no further forward.  If the lesions are mets then we have been told chemo and if not radio although this isn't likely.   I've read many treatment options for mets but read that recent findings are to have chemo within 12 weeks of first hormone jab.  However there's other things that are also being suggested in mythe research such as arberitone??? Instead of chemo but is 1 better than the other?  Also is there any options when it comes to radio therapy and is anything better than the other?

I presume when you set off on your journey yours hadn't spread to the bones?  Because dad's already has does this mean that different treatment options won't work as long?  Does it help that there's currently no mets on spine and hips when it comes to spread and pain?

Thanks again

Jackie

 

User
Posted 22 Jul 2019 at 21:40

Hi Jackie,

I was offered abi as an alternative to chemo and I had bone mets at dx. My onco said both treatments do a similar job but in a different way, the abi is kinder I guess as I have been on it since September  2018, see my profile for more detail. This forum is great for answers and support for the difficult journey ahead.

Chris.

 
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