Off-line I have received a number of additional questions about the use of imaging with c11 choline (see my post at http://advancedprostatecancer.net/?p=3433). The questions ranged from what is c11 choline to how it compares to some of the other more sensitive PET scans contrasts that are being used to identify specific locations of recurrent advanced prostate cancer.
Choline is a naturally occurring B vitamin complex which is necessary for the health of the normal cell structure and signaling; neurotransmitters and for general cell metabolism.
C11 choline is a synthetic version choline that releases beta decay that can be visualized by Positron Emission Tomography, or a PET scan.
Choline is rapidly taken up by prostate cells (contrary to the general impression glucose, which is used in other scans, is not rapidly taken up by prostate cells) and will allow prostate cancer metastasis to be visual.
Since prostate cells metabolize the c11 choline the PET images will show metabolic activity, not structural abnormalities like old bone breaks or arthritis.
The goal of using this type of scan is to determine if a man’s rising PSA after receiving primary treatment is a sign that their cancer is systemic (in this case meaning that that it spread to multiple locations) or is still focal (or just spread to 1 or 2 spots). If the disease is focal there can be a discussion of a treatment approach that could specifically target these prostate cancer spots.
If you do decide to explore c11 choline scans remember that like other scans it does have a high rate of false positives, so any treatment plan should include confirmation that the “hot spots” are in fact advanced prostate cancer metastasis.
There are other non-FDA approved scan contrasts that are also being used in various places in the United States. They include
Unfortunately, current technology remains lacking. There is no imaging test today that has been shown to to have really high accuracy. Despite this, in some men, these scans are able to identify recurrent micro-metastasis in some men with early forms of prostate cancer recurrences.
Joel T Nowak, M.A., M.S.W.
On the basis of a high PSA value (over 100) I have been advised that my prostate cancer has most surely already spread outside the prostate gland. It has probably been stopped for now by the near-by lymph nodes. My bone scan is still clean (as of Spring 2012).
Before consenting to radiation treatment I would like to know exactly where the cancer is and what tissue portions around the prostate gland should be irradiated.
Where in or near Northern California can I find 11-choline PET scan facilities?
Thanks
Friedemann Freund
Friedemann – I believe that with a PSA that is over 100 your cancer is most likely outside of the gland. However, why you think that it is limited only to the immediate area surrounding the gland? In my humble opinion your cancer is not just limited to the area immediate to the gland, but is probably already in other areas of your body.
To answer your question, the only place that you could get a choline PET scan is at the Mayo Clinic in Rochester, Minn.
I strongly urge that you forget the scan and immediately start hormone therapy starting with a Degradelix injection.
Joel
Hello,Mr Joel
I am extremely interested in C11 choline .But I can not find
any patents about it ,could you tell me where i can find some
patent about it?
Thank you very much!
Dengke Hua
Ms. Hua – I suggest that you refer this question to the Mayo Clinic which is the only FDA approved site using this technology. – Joel
Hi Joel,
I am 7 years out from RP at MSKCC. PSa never went undetectable post surgery. Salvage radiation. ADT plus taxotere then IADT now continous ADT rising PSA. Had the 11C choline scan at Mayo 12-27-12. Scan showed mcrpc in 3 localized LN. Scheduled for salvage LN dissection on Jan 10, 2013. Thought some of your readers may be interested.
Bill Manning
Bill, Good luck – Joel
I am 68 now i had prostate cancer in 2006 and i had seed implants followed with radiation .My PSA now is 4.3 and my doctor believes that it has come back even though my CT scan ,Bone scan ,Biopsy and MRI are clear.But my PSA is raising.Do you think i should have the choline sccan?My doctor wants to put me on hormone therapy ,he didn’t tell me anything about this scan i just came across it online.Do you think the pills work better or the injections for hormone therapy.How long do you think the hormones will work about my PSA was 7.3 first diagnose ,Score 3+3 ,Stage T2bc?What are the survival rates when someone begings chemotherapy?
Jimmy – You asked a pack of questions. 1- Without knowing your nadir score (the level your PSA became stable post treatment) I can not respond to your question about a recurrence. You certainly can have a recurrence even though your scans are clear. Given the fact that you stated your PSA is rising I would say that probably you are having a recurrence. 2- Hormone therapy is the normal next step, but given the recent approval of the scan it is certainly a very attractive possibility for you to consider. However, if you do decide to have the scan get it prior to starting hormone therapy as it will not yield good results with a PSA under 2.0. 2- It is impossible to predict how long hormone therapy will work. This is a very individual thing. If you read the literature it is predicted to last about 18 months, however our drugs are much better now and I believe that that figure is far from accurate. I have been on hormone therapy for almost 7 years and most men I know have had long term success like I have had. I know a few men who are now pushing the 15 year mark and hormone therapy continues to work for them. 3- The pills (Casodex) and the injections work differently. I am a firm believer in using both simultaneously. This is called ADT2 and I believe it is more effective than ADT1 (using just one). –
I suggest that you (or any survivor or caregiver) join our Advanced Prostate Cancer on-line group. Let me know if you wish to join us. – Joel
i will ask my doctor about my nadir score and i will get back to you with this.Where can i get the scan i asked at my hospital(radiation department)and they had no clue about what i was talking about?What i hope with this scan is to show the cancer and if it is possible to do radiation if it hasn’t gone where i have already received radiation in 2006.I am scared with the hormone therapy …side effects .You mentionedthat you have been on hormone therapy for 7 years what is your option?Has your quality of life changed …are you active as you used to?Do you think that it is best to be on hormone therapy always or have breaks in between?Start with piils or injections?Do these hormones affect your blood sugar,high blood presure?
THANKS
Jimmy – The scans are available ONLY at the Mayo Clinic in Minn. Only a radiologist who knows your radiation history can tell you if it is possible for you to have additional radiation. To learn about the possible side effects of hormone therapy download my book (free) at the advanced prostate cancer section of the Malecare web site (www.malecare.org). Yes, being on ADT has changed my life, but any treatment we choose to have for cancer will have an effect. There is no way to predict what side effects you could experience and even if you are going to experience any of them. Your ability to have intermittent therapy depends on the nature of your cancer. This requires a consultation with a good,and experienced prostate cancer oncologist. I am a firm believer in ADT2, or both pills and injections. – Joel
Hi Joel,
i went to my doctor and my PSA from 4.3 in Nov. went now to 7.2. From today i am going to be on Casodex and Monday i am going to do a shot for one month (just to see how my body will react and then decide for 3 or 4 or 6 months).The shot is going to be Lupron.My doctor said that i should do pill and injection together ,exactly what you had mentiod in your 2 emails.He said that if my PSA drops low he will stop me from the pill and if i reach 0.1 or 0.2 he would take we off hormone therapy and when PSA starts going up put me again on HT.So it is going to be an off and on process depending on the PSA.The only thing that worries me is that i went to 2 other doctors in my area for a second opion and also talked to a nurse on the phone from American Cancer Society and all of them said that i should always stay on hormones(for as lond as they work) ,no breaks ….to accept it as a chronic medicine and that the survivor rates are higher by doing so.What is you opion?You mentioned you are on hormne therapy have you ever had perionds not being on hormones?Was hormone therapy your first treatment line for prostate? I didn’t do the C11 cholone scan ,i do not know if i would benefit as i have done seed implants follwed by radiation and my doctor believes that i have received enough radiation in that place ,as far as any kind of surgery i can not know that also do not know how reliable this scan is,so decided not to waste time …i just hope i did the right choice of going direclty to HT.Hope to hear from you soon.Thank for always getting back to me .
THANK YOU
Hi Joel ,
Went to the doctor and my PSA from 4.3 in Nov is now 7.2.My doctor wants to put me on Casodex and lupron.What you had said in your 2 emails (firm believer in ADT2).I am thinking of doing the one month shot (then decided for 3,4 or 6 months)to see how my body will react.He said if it starts to drop he will take me off the pill and after if my PSA goes 0.1 or 0.2 take me off HT.So in a few words it is going to be an on and off process depending on what the PSA while show each time?2 other doctors that i went to in my area told me that i should always stay on HT ,until they would not work anymore and deal with it as a chonic medicine.What is your opion?Are the survivor rates the same?You mentioned that you are on HT 7 years …do you take breaks when your PSA drops very low?What was your first line treatmet for prostate cancer?I decided not to do the c -11 choline scan as my 3 urologist doctors in MI said that i would not benefit since i received seed implants followed by radiontion or benefit from any kind of surgery as they are assuming it it somewhere outside the prostate glad and had never head about this scan..seeing the video with DR. Kwon talking it does seem unique and helpful they have foud tumors at the bottom of the pelvis,at the VS,pelvic bone,cervical spine,pelvic lymph nodes,at the chest most were treated by XRT and ADT and when found local treated by cryotherapy,xrt i just hope i am doing the right thing going directly to HT.Hope to hear from you soon …and thank you always for getting bak with me.
Jimmy – Intermittent hormone therapy is when you go on and off. Most research has shown that intermittent therapy is neither inferior or better than constant therapy, but the side effect profile is much better on intermittent therapy. There is one major study from the University of Michigan that found that constant therapy was superior, but based on my reading of the study I feel that the results are not valid (see my post at: http://advancedprostatecancer.net/?p=3394).
Yes, I am currently and have been for over six years on intermittent therapy. Hormone therapy is usually the correct first line of treatment for recurrent prostate cancer. – Joel
Jimmy – See my response as I beleiev that I have responded to all your questions. If not ley me know what else I can add. – Joel
My father is 83 years of age. He has survived 23 years now with prostate cancer. At original diagnosis in 1989, the cancer had already spread to nodes, so he still has his prostate. Now – The C11 Choline Scan: Took Dad to the Mayo Clinic to be scanned. Scan showed many areas of “concern” that standard scans don’t reveal. Problem is, this technology is so new that most oncologists have no idea how to react to the results. Dr. Kwon is not an oncologist, and he should have consulted with my Dad’s oncologist before scaring us to death with the results. All Dr. Kwon did after the Choline scan was order “more scans” which can be done wherever you live. At 83 years of age, I would hesitate to understand why any surgeon would consider surgery for my Dad at 83 years of age. His Oncologist said if he looks around hard enough, he “might” be able to find a surgeon who is willing to remove his prostate, but that would more than likely involve entire bladder replacement surgery, and he’s urinating just fine. I guess what I’m trying to say is: I highly suggest speaking with your oncologist before making the trip out to the Mayo Clinic. Also, not everyone will qualify for this scan. The reason that my Dad was able to get it done was due to the fact that he has been having Lupron injections for so long, it’s no longer working. His PSA is still only at 7.4, and he’s survived this cancer for 23 years. At 83, I wish he would begin “enjoying” life, and stop “chasing” a blood number. Other than that, he has no symptoms. Beware, the Clinic only does 25 of these scans per week, and it’s the only machine in the Western Hemisphere. Many men are investing time and money to go out and meet with Dr. Kwon, only to find they are not even a candidate, and they leave disspointed.
First of all i will want to thank you for helping me take the right decision and i started my treatment on Feb 2013 .My Doctor put me on a shot every 4 months and a pill which i take everyday called bicalutamide 50mg.So far i have no side effects .On Oct 2013 i had my PSA taken and it was undetectable so my Doctor told me that if the next time he sees me on Feb 2014 the results are the same he will take me off the treatment.I am confused because i have heared that when you start hormone therapy you should be always on them on (better results for the future) and on the other hand you should take breaks when your PSA is very very low. As i stated above my Doctor wants to take me off the treatment if my Psa is undetectable….i told him my thoughts and he said” i will take you off the the shot ” and then i told him how about the pills and he said ” if you wish you can continue taking them ..it is your decision”. So my question is will i gain better results if i continue taking only the pill even though my Psa is undectable? .So– “Start and stop” hormone therapy is as effective as continuous therapy?
THANK YOU
Jimmy – If you go to the blog and search for intermittent ADT you will see a number of posts where I discussed this issue. After going through these posts feel free to come back and ask.- Joel
Hi Joel,
I read the post . You mention about a reacher in Pittsburgh about a drug called Avodart or dutasteride which is used during the “off cycles” of ADT ….has this drug been approved from the FDA or is it used in trials? What is your option ..have you tried it?Also i read that it is possible that when you are on continuos HT your body can get use to it and wont work any more is this true ?
THANK YOU
I am a 72 male, in otherwise good health. In 2007, UCSF did biopsy on my prostate with a Gleason of 4+3…I think Stage II……anyhow, serious enough to warrant doing something:
After a lot of research I chose to have High Dose Radiation AT UCSF followed by several weeks of External Radiation.
Outcome was as good as could be expected (PSA down to .1), but annoyance of having what you might call “urgent bowel syndrome”, and more frequent uriniation, but manageable.
PSA held at .1 for several years but in 2013 started to rise
June 2011 .1
Feb 2013 .5
Apr 2013 .4
Sep 3 2013 .8
Nov 21 2013 I just got the results today and it was .9
My oncologist said we need to wait to see if my PSA increases to “2”, and if it does, I need have another biopsy done and, if the results are positive, to consult with a surgeon at UCSF…But from what I understand, surgery after HDR and External radiation, is a much more complex issue with what can be horrific side affects.
I at least now enjoy a decent sex life, get up to pee only once at night, no incontinence, other than the urgent bowel thing….but with proper planning that is not a big problem.
It seems obvious that my PSA is on the rise, and there is a recurrence. Is it wise to wait till the “2” PSA level to act on the recurrence? Should the next step be another biopsy, or maybe the C11 Choline scan? When given the fact that a “recurrence” is occurring, and I certainly do NOT want to deal with the side affects of THAT surgery, I imagine my best course of action is HT. Would you agree? Any advice, Joel, you would have would be greatly appreciated.
Joel
Jimmy- You have asked a number of good questions.
1- Avodart and proscar are approved drugs, but the approval is not to treat prostate cancer. A doctor can write a scrpt “off lable” and in the vast majority of cases insurance companies seem willing to pay. There are many men who use it along with their hormone therapy.
2- I have recently added these drugs to my protocol on off periods and they have clearly slowed doe=wn my PSA progression. The question is do they just effect the PSA or do they actually slow the cancer.
3- What you are describing is becoming hormonally refractory, or castrate resistant. This is the normal progression of the disease. If you read the literature this will happen in approximately 18 months, but in my experience many men go much longer. I have been on hormone therapy for about 7 years and it still works.
4- I am not familiar with any research that shows that one should expected to become castrate resistant sooner or later by being on an intermittent or continuous schedule. Most of us who elect to be on an intermittent schedule do so to improve our quality of life. – Joel
During my husband’s recent abdominal aortic aneurysm surgery the doctor removed an aortic abdominal lymph node. It came back as metastatic adenocarcinoma from prostate. Bone scan negative. PSA 9. DRE prostate enlarged. Oncologist and urologist said this was a very very unusual finding. At this time it was recommended not to do any kind of therapy. Follow up in a month. We are at a loss
Elizabeth- It is hard to really give you a response without a lot more information about your husband. Treatment decisions should not be cookie cutter, but be responsive to the individual patient. For instance your husbands other medical conditions, his age etc. are important. Possibly, their decision to wait a month might be to allow him to have time to heal from the surgery.
You mentioned an oncologist, is this oncologist an individual who specializes in treating prostate cancer? If not, that type of individual should now be brought on to the team.
Now is the time to set some rules with the doctors, especially given that you are in the dark about the decision to wait a month meaning it has not been explained to you. You need to let the doctors know that this is not acceptable, they need to be available to explain things and answer your questions. I would call them now and ask for an explanation about how they came to the decision. If they will not share it is a good time to seek out another doctor. It is not unreasonable for you to know these answers. – Joel
I would like to thank you again for always replying back to me.
I will be off HT(until PSA starts going up…my doctor says it might take even a year to start HT again) at the end of May and i have a few questions about the drugs you had explain to me the last time.Do you take both drugs Avodart and Proscar ,do you take these drugs everday,for how long …until you start HT and do you take these drugs only when you are off HT or do you add them when you start HT?
THANK YOU
Jimmy,
Avodart and Proscar are both “off label” for the treatment of prostate cancer, but they are commonly used. They are used in different ways. Sometimes they are used as a full and legitimate ADT drug along with Casodex and Lupron, et. Whay I had had said that following a large EU study I elected to use one of them during an intermittent “off” period. I have not used them during my on periods and at this time have no plan to use them while I am on ADT treatment with drugs.
Avodart and Proscar are different drugs and you tale only one of them, not both. I have been taking 5 mg of proscar per day.
Joel
Hi Joel,
We have talked at the past and you were very helpful. I have been off HT for about 3 years ( in 2006 I had seed implants followed by radiation ).On Sept my PSA was 2.something I can’t recall now …and now it is 16.So what do you think is going on.
Thank you
Jimmy