Hi fellow travellers,
I had ralp spring 2019 and ever since my PSA has continued to rise and my latest PSA is now .2 I had a PET scan last week and due to see my RO next Thursday. I wondered if anyone could provide me with some advice as to what to expect? I imagine I may be having some RT and wondered if so when I might expect it to start and for how long? I am looking to plan the next few months, family holiday and work etc and any advice very much appreciated.
My husband is in the same boat as you. RP last spring, subsequent rising PSA. When it got to .2 we spoke with two ROs and he is headed for radiation starting next week. 35 treatments (7 weeks/70gy total) Because of his pathology they have advised he will only be getting radiation to the prostate bed. I think this length of time is pretty standard I also think that doing it now rather than waiting is advised.
Keep us posted!
Many thanks for getting back to me that is very helpful. Is your husbands radiotherapy treatment every day for seven weeks?
It will be five days a week with the weekends off. He had to go last week for a simulation session where they tattooed his skin and measured everything so that the radiation can be precisely delivered every time. He was told that once he starts radiation next week he can't miss a day, other than the weekends.
The treatment itself takes about an hour each day from start to finish including driving, parking, etc.
I suggest you clear your schedule once/if you get a date set. There are some shorter courses of radiation being delivered depending on your RO but MD Anderson is not following that protocol.
No mets? PSMA? Gleason?
I’m waiting for the results from PET scan next week, my cancer was T3a Gleason 7 (3+4)
If they use VMAT Hypofractionnated the Rx get shortened. I have 20 (4 weeks) Rx of 3 Gy each and it is th equivalent to 78 Gy. And the VMAT is very accurate and fast (less than 2 minutes)
He finished his treatment about four weeks ago doc. He did not get hypofractionated VMAT. Just 2Gy at each session for a total of 70 Gy. The sessions were very fast, maybe about 5 minutes after everything was set. He had to have his bladder level measured via ultrasound before every session which took some time.
Your PSA is still low, .2 is not a significant increase. That .2 could be caused by inflammation or irritation in the prostate bed. Unless the PET scan shows some changes your RO will probably tell you wait and see. If your next few PSA readings show a continued rise then some action would be called for.
Hi Magnus, many thanks. I have been told that when your PSA gets to .2 following RALP or you have three readings showing an increase in your PSA (both of which I have) then this is a sign of biochemical recurrence of the cancer and that the earlier the treatment the better? This is also what my RO advised?
That's a judgment call your RO will make. If he/she feels this is a real rise then by all means have the radiation.
Because of the pandemic, a panel of ROs has recommended that salvage radiation (SRT) be completed in just 20 sessions, or delayed using a 6-month shot of Lupron:
advancesradonc.org/article/...
Thanks Tall Allan, I will keep you posted
That study published April 1 made a number of assumptions, some of which are no longer true, some of which are not applicable depending on geographic area regarding covid and cancer care, and some of which were not applicable given the treating institution. Kaiser continues to treat using a 35 hypofractionation in its southern CA facilities for some of it's patients, City of Hope does not treat covid and is seeing and treating patients.
Your RO might advise adding ADT, and will advise you about the specifics and length of your treatment next week. It might be best not to make plans for the next several months as treatment may be required. Your RO might offer you an option to begin ADT, and postpone radiation for several months if you request it.
Your RO might also recommend a switch from Moto Guzzi to Harley too😉
Thanks wilcoxsaw that is very helpful. I have traded the Moto Guzzi in for a Triumph Thruxton 😀 yet to be tempted by a Harley 😉
You're moving in the right direction , 2 cyls just not in the right places! Good luck with your appt next week!
As we see the beginning of a second wave of infections, I think it is as important as ever to avoid places where a lot of people gather, like hospitals. The panel's recommendations have the imprimatur of ASTRO.
Thanks TA, do you know if these recommendations relate to the UK as well?
Yes- several of the panel members were British - this was an international panel.
Did the RO that you are seeing asked for the PET scan? If not, find another one that, as standard practice, implements scanning before irradiation. If you hand over to someone a text in a foreign language that he/she can't read, it will be placed aside before performing his/hers routine thing.
First of all, the PET scan will determine at least part of the treatment. If you have any bone mets (assuming the number is limited) they may treat them with radiation, typically for pain management and to restore the bone strength by killing the cancerous lesion.
You are likely to be placed on some sort of ADT. The type will depend on what they find and what works as treatment for you. There may be a bit of testing how different treatments work.
There's a lot out there that works well for different conditions. I recommend you educate yourself as much as you can from trusted sources and get a second opinion, if you feel there might be better options out there. Then you will be more sure about the course that you decide on.
Good luck!
Many thanks for your advice!
Be prepared (eventually) for a certain amount of fatigue from the radiation.
I had 'similar' treatment (79 Gy to prostate and about 45 Gy for regional lymph node(s))- about 1/2 way thru, I noticed a difference in my energy levels.
Post treatment, I noticed more fatigue, which fully resolved a few weeks / months later.
Radiation was not a bad experience for me, in spite of some temporary side effects.
Long term side effects have not been apparent to me, a this point in time .....
How long ago did you undergo RT? Also was this salvage treatment?
My original Dx was a bit more than 3 years ago. It was not salvage - it was primary front line treatment (with ADT) for my G9 / T3b Dx / PSA @ 300 +.
There is a difference between primary and salvage RT, but there are a lot of things in common as well. Side effects would be one of them, based on HOW radiation therapy works and the amount of fatigue would likely follow the same type of'quantification' logic.
RP was not an option for me - too far gone they said.
What I was hoping to get you to see is that R T isn't some boogeyman to fear. There are some side effects but they should be manageable - assuming you have a qualified team of professionals dealing with your PCa.
You need to develop a trust relationship with them to help guide U thru the options that might eventually present themselves.
The word 'cure' isn't used a lot around here - management seems more apropos, but based on staging, RT and a potential cure can happen for a certain group that have not advanced TOO far.
You may want to talk to your doctor about genetic testing. Should you have any mutations, precision medicine can possibly determine effective medication.
Many thanks! I am unfamiliar with genetic testing did you have one and if so what was the outcome?
Thanks to genetic testing I am now taking Olaparib, which has been very effective in controlling my PSA.
There are two types of test. One is a spit test from Color.com. The other is a biopsy tissue sample test from Foundation Medicine, which is more comprehensive and costly. I had both.
Many thanks all, I will let you know how I get on next week.
Overwhelmed!
On AS and not sure if I need another Biopsy
any success stories slowing down PSA & biochemical recurrence? 
Gleason 4+5 10/12 cores 10-95%
Possible Treatments with Recurrence after Radiation?
