Hi guys
My PSA has just risen from .01 to 1.0 im trying to get my oncologist to scan me for PC or even start radiotherapy but have had no reply in 4 days, if I just pay for a CT scan myself to move things along more quickly would a reading of 1.0 be expected to show up any cancer on the scan ? or is the reading a bit low not sure how it works.
My PSA 7 months ago just before the OP was 7.5 with a gleeson score of 4+3.
Cheerd
Hi Chubby 42, I recently posted that I had CT scan. Prob with CT is that you are processed in tiny slices and CT likely to miss ca. (if any) which could fall between viewable slices.
I am not a doc but having gone from PSA 200 to current 0.18 I would hazard an informed guess that your Onco not bothered by a rise to 1.0. Mine on Tuesday of this week told me my PSA could wander up and down and they will not worry unless I ratchet up a regular 5.0 - then they will look at reducing again. For me the odd thing is I don't feel any different at 0.18 from when I was 200. Drugs work but so do brains and bodies. Good luck.
Scruffybut1
Hi Scruffybut
Thanks for the reply ok i see what your saying, some people on here have suggested i go back to the Oncologist and get the ball rolling asap as my PSA had risen from .01 to 1.0 so i am a bit worried waiting 4 to 6 weeks for my next blood test would be a to long a wait.
If not s CT scan then which scan would be better for showing any PC.
cheers
Oh Scruffybut I am also in the UK on NHS and i don't have private cover but am fine to pay for any scans myself if it would help speed things along.
Here in the states ..a PET scan seems to be the gold standard at detecting any hot spots ...Good luck M8
A brief addendum: MRI used by my consultant for soft tissues, Bone scan obviously for bone hot spots.
There is a strong chance that if there is a site that is active it will be too small to pick up on a CT. Might even be too soon for a PET. With those readings the disease is probably microscopic.
My PSA is about 4.1 at the moment after 5 years of ADT and I have no symptoms. My oncologist (one of the top PCa specialists at Barts in London) said yes, we could do a scan but even if we found something there wouldn't be a lot we could do about it that wouldn't do more harm than good. I think I would leave well alone for the moment unless you have symptoms of bone mets.
Keep cheerful.
Hi rhbishop thanks for the reply m8 i see your point all i am able to do is speak to the Oncologist Secretary and not getting any further than that and have had no replies in 4 days but maybe im hoping or expecting to much.
I just wanted to know if having any scans now would help speed things along instead of waiting 4 to 6 weeks for another blood test to only tell us what we already suspect.
Oh well looks like ill probably just need to wait.
Cheers m8
I know when my psa started going up after surgery, 0.1 to 1.0 they said oh its to small to see on a scan, so we waited until it was 2.0 then it was , oh we cant use radiation because its spread all over your body, so I never did radiation after surgery just went straight to ADT and no Chemo, and they just passed me off to another doctor, oh what a life.
Sorry to hear that MrJack im sort of hoping I'll still have time for radiotherapy my PC was rated medium aggressive so I don't know how soon we need to take action but I'm trying to put pressure on the Oncologist.
Take care m8
Chubby, I wish you the best in fighting this bastard. I can not speak to medical care outside the United States, only what I did and most of that was against the recommendations of standard medical practice. You may be too early. I don't know. It depends on whether you are currently under any medication for PCa. For example, if you are currently taking Lupron injections and there is a PSA rise, then I world be worried. Below is a quick review of my treatment:
After my Dx of PCa in March 2003, I sought out two Radiation Oncologists with a PSA 6.2 and a Gleason of 7 (4+3). I had a nuclear bone scan and CT scan of the abdomen as an initial marker. I had 117 Palladium Seeds implanted and the other followed with 25 sessions of IMRT. In September of with a PSA of 11.4, I started 21 days of Cipro followed by 60 days of Bactrim and finally in November 2003 (PSA 13.0), 120 days of Indocin for fear of an infection. February 2004, PSA 12.6; March 2004, PSA 25.2; and finally May 2004, PSA 32.3. II had a nuclear bone scan and CT scan which shows mets to L2 & T3. I immediate received my first Lupron injection.
I sought out a Medical Oncologist from academia doing research on Advanced Prostate Cancer and subsequently started a chemo trial for the next six months. After the trial was over with a medicated PSA of 0.5, I had another set of scans done to mark disease progression. Over the next five years, I had a PSA of <0.1 with another 14 nuclear bone scans and CT scans of the abdomen. NOTE: My Medical Oncologist told me to not fret over my primary treatment for cancer. It did not matter. No matter which treatment I had, metastatic cells were already floating around in my lymphatic and vascular systems. Micrometastases.
In February 2010, I took my last Lupron injection or any other prostate cancer drug. Six months later, I had another set of scans. NOTE: All the scans after the chemo trial concluded showed that the mets were reversed with new bone growth.
In January 2012 I started a low dose (4 mg) of Androgen to recover Testosterone. I continue to be followed in the trial with quarterly PSA draws plus other stuff (4 pages worth). At my last blood draw in August 2016, PSA was still undetectable and T was 486.0. At 69 years of age, life is good.
Gourd Dancer
Hello Gourd Dancer, I am pretty new here and have not read anything about your experiences. Do you mind sharing details of your chemo trial with me? It sounds very exciting. So glad that you are doing well, and that life is good!
Susan
Hi gourd dancer, you have done really well m8 hope it continues.
I only had my prostate removed on March 29th 2016 and it was supposed to be contained but 7 months later im told my PSA has now risen from .01 to 1.0 and worried it is spreading, i don't want it to spread too much which may rule out radiotherapy i have had no other treatment or drugs.
Cheers
I would not expect a CT scan to show anything at your low PSA numbers. I've had a PSA reading in the 20+ range and still nothing shows up. I have a gleason score of 9. Don't panic. Watch your PSA doubling time. That will tell you more than a CT scan at this point.
It seems a little premature to get a CT Scan. Work with your oncologist. Usually a PSA under 2.0 after radiation is OK. You need a series of readings over time to evaluate the situation. PSA will bounce around for a while, will establish a low point or NADIR. Seems too early to be taking another CT Scan unless you have had a prostatectomy . See,harvardprostateknowledge.or...
A PSA of 1.0 post surgery is a clear sign that you have a recurrence. I don't know what types of contrasts are available to you, but in the states they are usually Gallium and are not sensitive enough to see anything with a PSA of 1.0. If you can get a PSMA scan it might
Show you where the hot spots are giving you the option of going after them. If these scans are not available then immediate radiation to the prostate bed is In order, but it needs to be done immediately as you are leaving the best level to treat the disease.
Do Understand that this type of shot gun radiation does sometimes have side effects.
Joel
There are a few places in the UK where they can do a multi parametric MRI Scan can be done. Would this show up small spots of cancer! I know a PET scan will not show small areas. Contact Macmillan nurses on their helpline. Look them up online for the number or contact Prostate Cancer UK Nurses on 0800 074 8383. Open Mon to Friday 8am to 6pm and Wednesday u til 8pm. You can also ask an expert on the Macmillan cancer website and also e mail the prostate cancer uk nurses on their website. They do say that you can wait about 2 days to get an answer but each time I have used this way of contacting they have contacted me well within 24 hours once by phone because they realised I was worried. Do you not have a "key worker" or Macmillan nurse you can contact for help and advice! Also if there is a Maggies Centre at a hospital near you go there for help - they are brilliant as can give advice on everything from th disease to housing and welfare benefits. All the very best.
Hi Desanthony
Yep there is a Maggies near my hospital our next date is the 14th Nov, ill try MacMillan first i think.
Thanks for your help guys
How are you getting on? Went to my radiotherapy open evening yesterday. Had a great talk given by someone who was in a similar situation to you and within weeks of receiving a reading if over 1 had radiotherapy to the Prostate bed. That was a year ago and he now has readings of 0. They believed all the cancer was in the prostate but some cells had obviously got out locally. Hope everything goes well for you.
Hey Desanthony
I can only hope they treat myself with radiotherapy soon before its to late, I keep leaving messages with the Oncologist Secretary but not getting any replies, it looks like i have to wait for my next blood test and appointment in 2 to 4 weeks time before going any further which is very frustrating.
Im worried now by waiting the 4 to 6 weeks between appointments and another few weeks before getting any treatment the PC will spread outside the prostate bed. Not much I can do.
Thanks for your reply m8
When do you get your PSA Test? I imagine like most of us it takes a week to get the results so you need to book the test a week to ten days before the allotted time. Has your PSA test been booked? If not book one with your GP. After all the problems I had trying to get tests over the past eighteen months now I can just call and say my consultant urologist, oncologist, nurse has asked for me to have a PSA test whether they have or not and I get an appointment. I would also write to your oncologist as your telephone calls are not getting you anywhere. Have you contacted Prostate cancer UK nurses on their helpline yet and talked it over with them? Maybe they can help. I have had a great deal of help from them - even with them telling me facts to take to my Doc to get things done when my Doc has been reluctant. The number is 0800 074 8383. All the best.
Also like someone has already said contact your urologist and ask him about testing and PSA levels after the op. If nothing else he should get in touch with the oncologist.
Hi Desanthony
Im waiting for my appointment letter my last appointment when i found outmy PSA had risen was 2 weeks ago, my next appointment should be in 2 to 3 weeks. Then ill get my blood tested about 4 days before the appointment.
They did promise me if they found it rising after my 3monthly appointments they would re-test me in one month. I normally get my appointment letter 3 to 4 weeks before.
Cheers
If you are paying for something,I would advice the more advanced 68GaPSMA PETCT. With all my conventional scans clear..this showed 2 uptakes at a PSA of only 0.3!!
Last comment. You do need marker scans if you haven't already had. It helps to rule out arthritis and serves as a metric for future progression.
GD
Sodium Floride scan if available. But I find most doctors won't do it until you're at 2.0. My husband's number fluctuated at 1.10-1.30 or thereabouts for a couple of years. He had previously been at .01 for about 3-4 years post surgery and radiation. I kept asking our doctor to do scan but since his psa didn't go to 2.0 they felt it wasn't necessary. I felt my husband wasn't doing as well as he had been. He passed out one night...unrelated to anything...but they did a ct scan of his head and neck to rule out neurological issues. That scan showed a lesion which was in the bone. he was still below 2.0 sometimes numbers aren't everything. Push to get a scan if you feel it will help.
Hi boc13
I'm trying to ask the Oncologist this question is it worth getting a scan but i don't get an answer, i can only go by what they say at the end of the day.
Looks like ill have to wait the 4 to 6 weeks until my next blood test or pay for the scans myself but some people say it may not reveal anything anyway
I'll prob ring Macmillan during the week if i don't hear from the oncologist.
Cheers
Axumin PET scan with undetectable PSA
Bone scan/CT sensitivity?
GA-68 scan Availability in US.
PSMA PET-CT Ga68 Scan results
SUVmax PSMA F18 PET/CT Scan
