CSN Login
Members Online: 5

You are here

PCa update

leamon
Posts: 39
Joined: Jan 2012

Swingshift, thanks for the suggestion to start a new thread.  I'll re-post some info from the other thread;

 

Hello all,  Psa 6 or 7 months ago was 14.  Early this year it was 12. It's nearing 5 Yrs. since a biospy.  Dr. suggested a repeat biospy altho he was against it a year ago.  I had no trouble the 1st one but I read where some have a lot of trouble.  He also says if the Psa gets toward 20, he would encourage treatment.  I am now 83 and in good health except for PCa.  Any comments or suggestions?

 

Following is my PSA history;

 

4/2004 3.2, 5/2005 3.0    6/2007 4.4    8/2008 5.9    4/2009 6.8    5/2011 7.0    11/2011 4.6    2/2012 6.16   free 1.24 % free 20.13    5/2012 7.2    8/2012 6.93    11/2012 6.53    3/2013 6.23    8/2013 7.18    9/2014 9.6    2/2015 9.99, mid 2015 14, early 2016 12.

An admission;  Altho I have researched the different treatments for PCa, I have not spent a lot of time on the ins and outs of different options.  I may be 'wistling past the cemetery' but I don't spend much time or energy worring about it nor did I when scheduled for bypass surgery.  I guess I'm stupid and may have some regrets when I face an open caket.  Don't take this to mean I don't covet and appreiciate your opinions and advise.  I have learned a good bit here and a lot of it has encourged me to not worry about it and has strengthened my resolve to be very slow about something that might greatly alter my enjoyable life style.  I weigh the +s and -s and ask 'how much added time do I get for doing this', the unanswerable question.  Sorry if this seems inappropriate and thanks for reading and thanks much for the time and effort many spend writing and giving good info.

leamon

 

 

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Leamon,

I am pleased to know about the decrease of the PSA. Again my advice would be to try in locating the bandit's hideaways with a PET scan. A biopsy may not be needed unless you want to know if cancer has changed its Gleason (aggressivity) or "expanded" to an higher number of cores (previously it was 3 out of 12). Though, the procedure is simple but may lead to unwanted infections, and its results would not alter the choice in treatment at your age. In such respect, the best is to do something that allows peace of mind, free of side effects and no lost of quality living.

Your story since 2012 is here; https://csn.cancer.org/node/234627

Against Swing suggestion, I would prefer to read your post in your previous thread. Does it matter?

Congratulations in your "downed" PSA.

Best wishes.

VGama

 

leamon
Posts: 39
Joined: Jan 2012

VGama, thanks for the reply  I want to thank you for all the time and effort you and others expend to share your expertize.  It saves me a lot of time finding the info myself.  And someone else's opinion is of value even if we don't agree. It doesn't matter to me about which thread.  Your link to the other thread is probably best.  I think the Dr. just thought it was time to see what has happened.  I thought about getting it done now so if I had problems it would be during the winter but I may just wait 'til May's appointment and see the psa then.  In re-reading the old posts, someone had said that statins may increase psa.  At the time of the last test I wasn't taking statin so that might explain the drop. My Dr. does not order a lot of tests, PSA and DRE is all since the 1st biopsy.  Some are likely to say that is not acceptable but there is no known active surveliance program in my area that I have found.  'Hopeful' related the story of a Dr. son telling his 85 year old Dad, with 45 PSA to just enjoy life.  That kind of re-inforces my attitude toward this.  Maybe doctors would rather not reccommend a lot of treatment at this age but feel compelled to offer it. Whatever we choose may turn out to be wrong.  I'm thankful that God has given me 83 good years and am carful about decisions that might ruin what's left  If 10 or 20 yrs younger, my thinking would probably be mush different.

leamon

 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

I must report that during the last few months,  there was a significant PSA increase for the 85 year old man that I referrenced....I think that it went to the 70ties.  He had a biopsy that indicated that there were cores of high intermediate, treatment was necessary. His treatment was first a couple of months of  Lupron, followed by SBRT (using the Novalis machine). He is still on Lupron. His PSA reading after SBRT is  1.7.

 

leamon
Posts: 39
Joined: Jan 2012

Thanks for the reply and info.  I don't think his having treatment changes my view.  It is almost certain that the cancer will increase if we live long enough.  If so, then we make a decision on what to do or not do.  I have leaned toward cyberknife if treatment became desirable but wonder if the small doses of IMRT would be less likely to do real damage.  The old saying, "you pays your money and takes your choice".

Thanks, and keep up the good work.

leamon

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Leamon

You are right, if younger even doctors would highly recommend treatment. Older guys with no apparent aggressive cancer are put on hold because the majority of them die of other causes.
In any case, one should not give up in trying controlling the bandit’s advancement. Treating prostate cancer with intent of cure is ambiguous and nobody can assure 100% success. Only contained cases may have such probability secured.
In a case of uncertainty, the risks and side effects attached to the treatment must be carefully weighed in.

Surgery is very much linked to incontinence. Radiotherapies are linked to colitis, prostatitis and weakness of the immune system. Hormonal therapies are linked to menopause like symptoms (lost of concentration, mood changes, anxiety, fatigue, depression, etc). None of the above therapies are recommended in guys with heart problems.
In other words, if treatment becomes inevitable, one should try balancing the choices against one’s preferences, giving credit to present and future health occurrences (not linked to PCa).

Many old men try controlling the cancer via the reduction of the testosterone. This simple procedure can be accomplished in “phases”, eliminating the level of the stuff in circulation (orchiectomy), or in an intermittent modality (LHRH agonists). Both are good choices if the type of cancer is androgen dependent. Soft drugs substituting the means involving lowering the testosterone are the antiandrogens, pills taken daily but which may interact with other medications for other illnesses.
HT efficacy can be tested with one shot of Firmagon. If the PSA goes down it would mean that the cancer is hormone dependent. Such could then be continued if you manage the symptoms or substituted with orchiectomy of one testicle to diminish a part of the testosterone in circulation, but avoiding menopause. The PSA would serve as the marker of control.

I never heard of statins increasing the PSA. I believe that statins decrease the activity of the cancer, therefore lowering the PSA. Testosterone is produced from cholesterol so that lower cholesterol may relate to lower T. You could request a Testosterone test together with your next PSA test to have a base-line value before starting any treatment. Here is a video of Dr. Myers talking about statins influence in PCa;

http://www.prostatepedia.net/blogs/ask-dr-myers/61783427-statins-and-prostate-cancer

I am sorry for this difficult and stressful moment in your life.  I believe that PCa will not “kill” you. You may try living with it, try controlling its advancement or try eradicating it. Your choice will be the best for sure.

Sincerely,

VGama

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

Leamon,

I very much admire your healthy and balanced attitude toward all of this.

Like Vasco, I have never heard of statins, which I have taken for 20 years, increasing PSA.   Except in early 2015, your PSA  "doubling-rate" has been very low, which usually in indicative of a non-aggressive disease.  I am NOT deeply read regarding A.S., but I believe that PSA above 10.0 is usually a point at which other treatments are recommended.

Personally, I feel that surgical removal for a man 83 would be a very bad choice, almost absurd.  I think your idea regarding IMRT is very sound, and likely much less traumatic to deal with, and it also avoids the nasty side-effects described regarding hormonal therapy.

I have a friend with PCa, now 73.  He had a mildly positive biopsy about seven years ago. His next biopsy was totally negative, undoubtedly what is termed a "false negative," but it proved his cancer is small, limited.  His PSA has remained below 3.0 for the last three years, and the urologist only checks him once a year now.  it is remotely possible that in three or six months your PSA would be at, or below its current level.  Not probable, but possible. Ask your doctor.

Your calm is the perfect response in your case, I suspect.

max

leamon
Posts: 39
Joined: Jan 2012

Thanks fellows.  I'll probably wait a while for the biopsy.  A daughter is planning back surgery in a month or so.  I don't want any "complication" at that time.

Thanks again for all the info.

leamon

leamon
Posts: 39
Joined: Jan 2012

 

Hello all, I have been Watchful Waiting for 5+ yrs. A recent biopsy calls for an update. I had an MRI guided biopsy which showed major involvement and a Gleason of 8 or 9(per John's Hopkins). I've seen 2 oncologist. One recommended 2 to 3 yrs. of hormone therapy and 45 external beam radiation treatments. The other suggested 3 to 6 months of hormone ( to reduce the size) followed by High Dose brackytherapy followed by 25 treatments with external beam IGRT/IMRT. Urologist says bracky is more likely to have uninary problems. Unless I change my mind before 11/11, I will start the hormone treatment (Firmagon followed with Elagar) and decide what radiation to take after the 3 months. Latest scans show no spread of the cancer outside the prostate. Any comments appreciated. It seems not many on this board have had Bracky. Psa in May was 14.8> If you want to read the earlier posts, type 'leamon' in the search.  Thanks in advance. 

leamon

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

Sorry about the bio results.

Using brach for neoadjuvant therapy is sometimes mentioned, but from what I have read, in a case as aggressive as yours, I would not go that route.  The most common employment of brach is for mild, incipient disease, with PSAs below 10.

Undoubtedly you will get some combination of aggressive IGRT and HT.  I wish you well, and hope total elimination of the disease is possible and occurs. What is potentially CURATIVE in your case is the radiation, while the HT in effect assists the radiation in beating back the disease.

max

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Bracky is not effective for men with large prostates, thus the recommendation to reduce your prostate size so you might receive this treatment.

Suggest that you speak with a radiation oncologist that does SBRT. This radiation type is  very precise. The radiation can be directed to encompass the prostate and some surrounding tissue. There are four or five treatments.............a combination of hormone and radiation in my laymans opinion will be very effective.

leamon
Posts: 39
Joined: Jan 2012

Thanks Max and Hopeful.  The bracky oncologist was ok with the Gleason score but the size would have to be reduced.  This Dr. says she has done about 1000.  Some things I read indicate less sever side effects but my Urologist doesn't agree. I can't find much up to date experience postings about bracky. Maybe few on these boards have had it. As for the SBRT, some do not take anyone with Gleason higher than 7. The IGRT oncoligist says he does about 40 a week and has been with this place 3 yrs. Don't know about his prior experience.

leamon

hopeful and opt...
Posts: 2224
Joined: Apr 2009

A study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4227393/

gleason 8 results from above study

 76.2% for GS ≥ 8,

You may wish to compare a combination of GS 8 with hormone versus other treatment choice.

 

leamon
Posts: 39
Joined: Jan 2012

Hopeful, thanks forthe link.  Do you know of a similar study for IGRT/IMRT?

leamon

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

Leamon,

All books and articles (or very nearly all) on the subject of comparing SBRT to fractionated (conventional) RTs (i.e., IMRT-IGRT) show them to be statistically identical in cure rates for PCa. I do not have any studies at hand, but could look for them. I do have comments in book form that I could share, but no one here that I can recall debates this.

IGRT would take about five or more weeks of treatment to deliver around 76-80 Gray ("Gray" is a measure of radiation dose), SBRT about five days for approximately the same amount of Gray.  Think of IGRT as drinking from a shot glass, while SBRT is drinking a Slurpie Big Gulp at 7-11. 

Convenience is a major selling point for SBRT.  There are cases in which SBRT is less ideal, and radiation oncologists revert to fractionated, but there is no reason to get into that here....debate over how to cover the prostate bed to kill micrometastatic cells, etc.  With good imaging and results, a radiation oncologist will know pretty clearly if SBRT is suitable.  In America SBRT consists of essentially two machines: the Cyberknife, and products made by Varian.  Some centers buy one, some the other (and some smaller facilities have neither).

max

hopeful and opt...
Posts: 2224
Joined: Apr 2009

another platform for sbrt

 https://www.novalis-radiosurgery.com/patient-center/faqs/

................................................................

brahytherapy outcome for high risk patients 63 %  , in a dated 2010 study

"The biochemical outcomes with brachytherapy are also durable with longer term follow-up. Taira et al.reported 12-year bpfs rates of 97.4% and 96.4% respectively for low- and intermediate-risk patients (n = 463) treated with prostate brachytherapy monotherapy 7. Results from the BC Cancer Agency for 1006 patients with low- and “favourable” intermediate-risk disease, of whom 65% received neoadjuvant androgen deprivation therapy (adt), demonstrated 5- and 7-year bpfs rates of 95.6% and 94% 8. For 1449 patients, 27% of whom received adt and 20% supplemental ebrt, Potters et al. reported 12-year bpfs rates of 89%, 78%, and 63% for low-, intermediate-, and high-risk patients 9."

external beam

"External-beam rt may also be combined with high-dose-rate (hdr) prostate brachytherapy. As with the combination of ldr brachytherapy and ebrt, the combination of hdr brachytherapy and ebrt has produced biochemical outcomes of 96%, 88%, 69% at 5 years for modified low-, intermediate-, and high-risk groups 13."

Total study....worth reading total study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2935704/

Best

"

 

leamon
Posts: 39
Joined: Jan 2012

Thanks Max and Hopeful.

leamon
Posts: 39
Joined: Jan 2012

 

After my recent biopsy, it seemed advisable to start treatment. I was told by my Urologist that treatment would be IGRT/IMRT and 2 to 3 years of HT. I consulted with his associate, a radiation Oncologist, and he said the same with no other options mentioned. I consulted a brackeytherpist. Because of the danger of heart damage, she suggested HT for only 3 to 6 mo. to reduce the size of the prostate. First time heart damage was mentioned so I talked to my cardiologist. He was not in favor of HT unless it became necessary. I then consulted with a radiation Oncologist at a major hospital. He laid out 3 options, do nothing, radiation or radiation plus HT. The last was not his choice but he would accept my choice. I was not a candidate for SBRT, so it would be IGRT/IMRT. He laid out the chances of a cure with or with out HT. If I wanted HT, he suggested a 1 mo. shot as a trial, the first to suggest the smaller dose. He also would bring in a medical Oncologist. He also showed me the graph that estimates the chances of dying with Pca with no treatment. For my age (83) and Gleason (8 or 9), 6 out of 100 would die from Pca. Radiation is my choice.

 

The point of all this is; don't accept the first opinion and be aware of the heart damage possibility with HT.

 

I started radiation Nov. 3. After the 2nd treatment, I had to go to the Emergency room and get my “radiator” drained. Looks like a “fun” 2 months.

 

I thought about posting details of the significant issues that occure (maybe in my 'profile'?) altho it's doubtful if that will add to what others have akready posted.

 

 

 

 

 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Thanks for the update

Wishing that the rest of your treatment is  non eventful ,  and a speedy recovery.

h

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Great report. There are many reading your posts and benefiting from your updates (even if they do not participate in the discussions). Please continue reporting on the issues.

I couldn't understand the full protocol of your treatment. Have you started Firmagon?
How many Gy (RT dose) and number of RT sections have been planned?
Did they check the PSA before starting HT?, RT?

What do you mean by saying: "I had to go to the Emergency room and get my “radiator” drained"?

I wonder what has been decided in regards to the above comment/occurrence. There have been cases that patients had to suspend radiation for a number of days without problems. The radiation would continue and the dose would be rescheduled with no loss in the benefits of the treatment. Some busy clinics do not like delays because of machine's fixed schedule for other patients, but you should only continue once the problem is solved.

I hope all is "fixed" and that the treatment is successful.

Best wishes,

VG

leamon
Posts: 39
Joined: Jan 2012

Thanks Hopeful and VG for the replies and best wishes. The 'radiator' (a country boy expression) is the bladder . I had to go to the Emergency room late night after the 2nd treatment. A lot of pain for a few hours and finally decided I had to go. For anyone that has that almost constant pain and can't urinate, you might as well go to the ER. It won't go away.

My cardioligist, the oncoligist I chose and myself all agreed to take HT only if it became necessary. The HT would increase the cure rate by abount 15% but with only a 6% chance of dieing from Pca, is it worth all the problems that are a part of HT especially at this age?  VG, the total radiation was 39 sessions for a total of 78 or 79 Gy. VG “I wonder what has been decided in regards to the above comment/occurrence.” If I understand you correctly, they thought the early occurance of this might have been because of a large prostate. They left the cath in until Monday and didn't do the Friday session. Monday they removed the cath and resumed. For the treatment we have to drink 24 oz. of water 30 minutes before. I had trouble holding that Monday but not today. I had to get up several times last night. Probably because of the cath and FloMax. I seem about normal today. The last PSA I had was in May. It was, I think 14.8.

Thanks again for the wealth of info.

 

leamon

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Sounds like  you've made a well reasoned decision for your treatment.  Best of luck and keep us posted regarding your progress!!

leamon
Posts: 39
Joined: Jan 2012

Thanks Swing, I'll try to keep significient issues posted.

leamon

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Leamon,

I am a city boy but live in the country now and frequently have to "watering the flowers". This is an issue since RT. Some nights I need to "empty my tank" three or four times, in particular when I drunk too much water at dinner time. I have no prostate (RP in 2000) so that the issue is thought to be due to scar tissue in the bladder.

Your emergency case most probably is a cause of RT inflammation which together with existing BPH caused constriction of the urethra and that to dangerous retention. In your post of 2012 we have discussed about the hyperplasia issue. It has increased the prostate size and lead to higher PSA levels meaning that the 14.8 ng/ml was not all due to cancer. Larger prostates are difficult to radiate in particular if the hyperplasia is located closer to the bladder neck (base of prostate).

Your radiologist knows about these details from the CT/MRI images. They plan the RT field of attack based on these pictures and avoid radiating trouble areas. Retention may occur again so that you need to be cautious. Drinking loads of water one hour before each RT session is good and helps in securing the local organs in place (they move frequently) assuring better delivery of the rays to intended spots.

IMRT in 39 sessions for a total of 78 or 79 Gy is typical; some delicate areas with get 1.8 Gy per session and others 2.0 or 2.5. Usually it includes localized lymph nodes. I recall feeling burning sensations when peeing at the three week period. Colities started much later at the 6th week. It all clears within two/three months post RT. I was careful with my diet at the time, avoiding some foods. You can inquire about this matter and change to something practical for you.

Best wishes for a successful RT.

 VG

leamon
Posts: 39
Joined: Jan 2012

Thanks VG.  Re the 39 sessions, the other place uses 45 sessions, probably a lower dose per.  I have noticed little if any change but only the 5th treatment  A bit of 'burning' after the cath but minor.  I wish you and all others well.

leamon

leamon
Posts: 39
Joined: Jan 2012

I commited to post updates so here is one.  I have completed 20 of 39 sessions.  With the exception of the cath episode after the 2nd treatment, I've had nothing that I could blame on RT.  I've been taking Flomax since the cath.  I only get up once or twice per night now as oposed to 2 to 4 before.  So far, it's almost a none event but doubt it will continue. I should be so lucky!  

Thanks and best to all,

leamon

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Glad for the news. Let's celebrate the Radiator's improvement.

A bottle of red is already reserved aside to celebrate the final RT outcome.

Best,

VG

 

leamon
Posts: 39
Joined: Jan 2012

Thsnks VG.  That final RT will almost coincide with my b'day (5 days late).

Merry Christmas and a Happy, Healthy, Prosporous New Year to you and your's and all others on this board.

leamon

 

 

leamon
Posts: 39
Joined: Jan 2012

Hello All,

It's 6 months since I posted so, as promised I'm posting my latest info.  I finished treatment at the end of 2016 and just had my 1st follow up June 7.  The oncologist was thrilled with my 2.6 PSA and scheduled me to return in April of '18.  He says the rediation will continue to work for 2 years.  I have had very few problems except for the emergency room visit after 2 treatment.  I have had a bit of loose bowles (diahrria 1 time).  Probiotics was suggested and seems to have helped.  But it is not a big problem.  I also don't have a lot of stamina and can't do a lot of real work.  How much of that is because I am approaching the 85 mile marker on this road of life?  The Lord has taken care of me and I Pray all of you as well. 

leamon

PS  I had catarack surgery on 1 eye this year.  What a difference!

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Let's celebrate.

The PSA should continue to decline, with prehaps a bump in about 18 to 24 months.

After cataract surgery, you should have no problems finding a bottle of wine. The  'radiator' should work fine.

Best

 

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Yes, these are good news. I enjoy reading it allover again. The lower PSA is consistent with a successful RT outcome. One must recall that HT is not part of your protocol so that the PSA of 2.6 ng/ml is unmasked. The lowering from 14.8 (+α) to 2.6 in 6 months in a Gleason grade of 4 signifies that the RT gave a big blow to the bandit. You will need more time to confirm cure.

Congratulations.

VG

leamon
Posts: 39
Joined: Jan 2012

Thanks VascodaG for reminding me that I made what I think was a good move by going with a different oncologist.  As I said earlier, I was about to start HT when the heart issue came up.  As you pointed out, we would be in the dark if HT were masking the results.

thanks again,

leamon

Miao
Posts: 6
Joined: Jun 2017

Hello ,

Does aggressive prostate cancer always have hight PSA?

Thank you

Lucky64
Posts: 29
Joined: Jun 2017

Miao,

 

Get the biopsy, it' doesn't hurt that much. They gave me a Xanax which really helped.

 

Then when you get your results, have the slides sent for a 2nd opinion to the famous Dr. Epstein at John Hopkins. My understanding is that if you have a Gleason Score of 7, and it is made up of 4+3, that puts you in Group 3, called  Intermediate, also known as agressive. That is what I am so I am now looking at surgery or radiation. If you get a lower score you can do Active Surveillance, basically waiting, it depends on your age and longevity plans. But do the biopsy.

 

Nick

Miao
Posts: 6
Joined: Jun 2017

Nick,

thank you, i never think i will have prostate cancer, i will have my biopsy next week.

Old Salt
Posts: 720
Joined: Aug 2014

Does not have high PSA. In fact, the opposite may be true. In other words, high Gleason score cancers appear to be generating less PSA. But these thoughts are all highly premature. Just relax for the time being and get the biopsy over with. Choose someone who has done many. 

And PLEASE start your own thread. so that we can focus on YOUR situation. Look for the tag Add new Forum topic

Miao
Posts: 6
Joined: Jun 2017

Old Salt, thank you. i am 68yrs old. psa was 4.3 on  nov, 2016, 4.08 on 3/31/17. no any symptom. it really scared me. i will have my biopsy next week

leamon
Posts: 39
Joined: Jan 2012

 

Hello, I'm back.

 

After a 2.4 psa in June 2017, it jumped to 107+ in Jan. 2018. Did a bone scan last week-not good. Looks like I'm facing HT. Had I known how little side effects I would have from radiation, maybe I would have got treatment early but maybe 5 years changed the quality of the machines and techs. Part of the decision for delay was the Urologist estimated I would have 7 to 10 years without treatment which was about my life expectancy at 78. What ever, it is what it is. I am very reluctant to say 'I wish I had done this not that'. The road I took was pretty good. The other road might have turned out very bad. (Sorry if a little too philosophical).

 

Have an appointment Tues. with the radiation oncologist where I had radiation at the end of 2016 and also a medical oncologist at the same place. Have an appointment with the urologist that diagnosed my cancer in 2011 and I saw until I started the radiation. The lady at the urologist office said they would probably prescribe Firmagon and Xgeva and probably switch to Eligard because of the less frequent shots altho the Ageva would be monthly. I am now 85 and seem to have no heart problems but did have by-pass in 2011. The cardiologist was not is favor in HT in 2016 unless it was necessary so he may not be in favor of the Eligard. I would appreciate any thought on these and also any thoughts on choosing a Urologist vs a medical Oncologist. The Urologist and the group he is with deal only with urinary problems and Prostate cancer and he is about a mile away. The other about 15 miles.

 

 

 

Vgama, in an earlier post, you mention one shot of Firmagon as a trial. Do you know if it is an 80 shot or the full 240 1st round? In re-reading I see that the radiation oncologist mentioned a one month shot as a trial at the time we were talking radiation in 2016.

 

Thanks and the best to all,

 

leamon

 

 

 

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Leamon,

This last increase is not good news. Could there be a lab error? You can always repeat the blood test before advancing with any decision. But you inform here for the first time since 2012 the result of an image study (without details) on which makes me difficult to opinion.

I understand that the rise and high number in PSA is worrying you and probably affecting your reasoning. After rereading your story (since your initial thread) I think that you did very well and even got the guts to use a radical at your age, to eliminate the unwanted guest. Your choice was the best. For me, there was a missing truthful image exam in the planning (field of attack) of the radiation that most probably did not cover the affected bone areas.

I wonder what have you discussed with your present oncologist/urologist, but it makes sense the comment from the urologist’s office in starting ADT (Firmagon and Xgeva) if apparent metastases have been detected in bone. Firmagon is an LHRH antagonist that will drive you to chemical castration providing control on cancer advancement, and Xgeva/Prolia will try preventing the breakdown of bone that is infested with cancer (it is used in osteopenia/osteoporosis situations or to prevent it). When guys got extensive metastases in bone, joints may be affected so that Eligard (another LHRH agonist) should only be administered after two weeks of antiandrogens like Casodex. LHRH antagonists (Firmagon) do not cause flare so that it is the best choice for starting the hormonal therapy.

Firmagon is also friendlier to heart issues and some guys continue this med all along their ADT. The protocol requires two initial injections of 120mg (2x120=240) that will accumulate in the body, which dose is then maintained with monthly shots of 80 mg. Please read my comments on Firmagon to another poster in here;

https://csn.cancer.org/node/314251

Eligard/Lupron (leuprolide) is typically injected every three months (lesser times at the doctor and lesser injection pain). I was on Eligard 6-month shots three times (covering 18 months) back in 2011. I did not have bone metastases but slight osteopenia. In your shoes I would do two important tests (urologists never request) before starting ADT that will help you in continuous control. Firstly the Testosterone (can be requested with the same blood sample for the PSA) and secondly, a DEXA scan (densitometry) to verify present bone health. If osteoporosis is already evident, then you should do any needed dental repair before starting Xgeva. Osteonecrosis of the jaw may occur.

At your age, I would try keeping a medical oncologist to follow your situation (every six months), in particular regarding drugs use and interactions with other illnesses. Urologists typically only follow the cancer issue and the treatment. Heart health is not their specialty and would not provide you with counseling on matters away from their urinary/prostate field.

Please post here any image study report you may have since 2012.

Best wishes and luck in your continuing journey.

 

VGama

 

leamon
Posts: 39
Joined: Jan 2012

 

Thanks Vgama, you are a vast store house of knowledge, more than I can absorb. I'll try to answer some of what you asked. Lab error; I wondered the same thing and got another report from a different lab about 1 week later. It was 130. Scans; I don't remember any scan except an MRI prior to the 2nd biopsy. However, the report on last week's bone scan refers to one 9/28/2016 which would be about a month before I started radiation. The best I can do on the image study report is to copy it. Here goes;

 

“NM Bone Imaging Whole Body (Nuclear)

 

“Received technetium-99m MDP 3432.5 intravenously.

 

“There is very intense uptake mainly of the axial skeleton and proximal appendicular skeleton. Heterogeneous uptake is seen in the humerus and femur shaft bilaterally. There is relative lack of soft tissue activity and kidney activity. Findings are consistent with a superscan with diffuse skeletal metastasis. IMPRESSION: Diffuse skeletal metastasis.” Hope this helps.

 

I have added an appointment, Thur., with an oncologist that treated my wife about a year ago. As an aside, she had a scan in Dec., no sign of cancer. I'll probably know my options after that appointment and will post again. I'm thinking that I have little or no choice but to proceed.

 

Thanks,

 

leamon

 

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Leamon,

I do not want to lower your esteem and positiveness you done in confronting your case. However, I am astonished with the contents of the bone scan report; in particular I am astonished for the fact that doctors had access to the scan findings before starting the radiation therapy and advanced in doing it. The report comments on vast spread of metastases which surely could not have been covered in the radiation planning. Patients on such a status are never moved into radiation therapies of the prostate for the risks it entails and the problem in future possibilities of controlling pain due to bone metastases.

The decision of the doctor(s) assisting you in 9/28/2016 was solo to diminish the burden of the cancer not to aim at cure. The progression of your illness was expected and that reflects in the last PSA increase. I am not a doctor but in view of your later information I think now that RT was not the best choice. You should have been moved into a protocol of chemotherapy with hormonal manipulations, reserving spot radiation to future needs as pain becomes unbearable. Surely your age and other health issues were taken into consideration and probably lead to avoid chemo and ADT, but RT for palliative administration purposes would not incur such vast field to administer 78 Gy, unless the planning included radiation in the whole skeleton.

Please let me know what has been discussed in your next consultation. Do not forget to request the above tests before starting ADT.

Best wishes,

VGama

leamon
Posts: 39
Joined: Jan 2012

 

Hello,

My last post may not have been as clear as it should have been . My bone scan 9/28/2016 did not should an bone involvement. The results quoted were from the scan done 2/6/2018. So, all of this has taken place in the last 14 months or so. The PSA rise has been in the last 7 months. Sorry for the confusion.

 

I start firmagon Fri the 9th and switch to Eligard. Also will get 1 dose of radiation, next Wed the 14th to an area about 6 inches above the knee . Will also be given Xgeva. Sounds like a good (not) diet for the rest of life. As you can imagine, I really look forward to it.

leamon

 

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

I am pleased for knowing that the above BS report was not the one of 2016. RT seams in the end that had a reliable purpose. Unfortunately it did not stop the cancer advancement as cancer may have spread already but was unnoticed. In any case, cancer does not spread that fast in 14 months to such extended areas. Traditional bone scans and MRI (2016) have limits in detecting metastases/lesions of sizes smaller than 1.2 cm, turning these exams into false negatives in micrometastases. This is a common problem we cancer patients confront. We never know if the little baggers exist and where are located.

I am sorry for my above post but the confusion ringed my alarms. Sometimes I question myself if I should or should not opinion on a discussion.

I still recommend you to draw blood before the Firmagon injection to get a testosterone initial-value marker for future ADT control.

Best,

VG

Subscribe to Comments for "PCa update"