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FlyFisher
Posts: 4
Joined: Mar 2016

Hello, everyone.  I have been reading the forum for a few weeks and learned a great deal from your discussions.  Thank you for all your valuable comments.

Here is my story:

Age: 71, diagnosed in March 2016.  DRE showed lump, PSA 6.6 which increased 1.4 over past 12 months.  Biopsy showed 9 of 12 samples positive: 4 Gleason 8's, 4 Gleason 7's, and 1 Gleason 6; majority on right side.  No other symptoms other than DRE and PSA.

CT scan, Bone scan, and chest X-Ray were all negative.  My uroligist did not recommend either surgery or radiation treatment, leaving the choice up to me.  I have had 2 inguinal surgeries in past 50 years.  I need to constantly be careful of what I lift and do, else it takes a few days to recover from pain in the groin area.  The muscles and tissue in the groin area are not the strongest.  I have read about others having hernia following prostate surgery.  As a result, I am not anxious to undergo prostate surgery.  Other than the hernia issue, I am in pretty good health.

I have seen a radiation oncologist who was very helpful and informative.  His recommednation is to have EBRT and seed placement.  My urologist thinks that is a good plan, as does my Primary Care Physician.  The one issue I have with radiation is that I am told after radiation, surgery is not recommended if radiation is unsuccessful.

I am currently on Casodex and will start hormone therapy (Lupron?) is a another week.  My pending decision is to go with the radiation plan and hope for the best. 

Any thoughts you all might have would be greatly appreciated.  Thank you for your help and may we all recover from PC.

 

 

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

FlyFisher

Welcome to the board.

I also think that radiation is a good “shot” for you. Gleason 8 (4+4) is aggressive and the positive DRE may signify that extra capsular extensions exist, even with negative image studies. The hormonal portion (ADT) you have started is palliative but it will increase the success of the radiation. It “sensitizes” the cancerous cells to better “absorb” the radiation and die. In other words, it will “lay down” the cancer for the whole period until the cells’ life cycle completes. The radiation will kill the cancer by “disrupting” its DNA, prohibiting it from recuperating and duplication.
Typically one is on ADT during two to three months before the radiation, and it will continue for additional 6 months or two years, depending on the aggressiveness of the case.

I wonder if the seeds you comment above are the fiducials (markers to guide radiation)?
Seeds could mean brachytherapy, another form of delivering radiation to the prostate, which could be part of the radiation protocol; Brachy plus EBRT.
Can you share more details of your treatment?

A note regarding your worry issue with RT “I am told after radiation, surgery is not recommended if radiation is unsuccessful”; I may say that this is not exactly true. Some surgeons do operate after radiation but there are risks in the healing process because the local tissues are affected and take much longer to recuperate from the “blow” (over 6 months in low grade Gys). Moreover, why doing surgery after failed radiation?
Surgery is a choice to be taken if the cancer is contained within the gland. In extra prostatic extensions cases, it would be used for the purposes of debulking the big bulk of cancer (the whole gland) without any assurances of cure. The cancer could exist in the prostate bed or at the near lymph nodes, requiring additional treatment (typical of Salvage Radiation).
I would say that the worrisome would be for radiation over radiation because of the limits of our body tissues in absorbing radiation. It could cause fistulas.

EBRT done from the begining will cover the whole gland including those near by areas (prostate bed plus lymph nodes). You can discuss with the radiologist on his intended coverage to be sure of what will be done.

Think positively. The radiation will blow away those buggers for good.

Best wishes for a successful outcome.

VGama

 

FlyFisher
Posts: 4
Joined: Mar 2016

VGama,

Tthank you for your comments.  By "seeds", I do mean brachytherapy.  At this time, I am not sure what isotope will be used, but I expect EBRT for about 4 - 5 weeks, then placement of the seeds.  I should know more in next couple weeks.  Thank you for your positive encouragement.

FF

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

Thanks for sharing the details. I am aware of this sort of combination radiotherapies however I see more cases using brachy first (as main) followed by EBRT as a boost, to cover surrounding areas such as the seminal vesicles and bed (plus lymph nodes). In your therapy they will use EBRT as main and add brachy as the boost. This type seems more recommended to lower risks cases of Gleason 6 and 7.

The main difference between EBRT done alone to a protocol with a boost is that in a combination therapy the total radiation delivered to the prostate is higher. The initial EBRT delivers less Gy saving the healthy tissues in the path of the rays, standing before and after the prostate. Brachy is a more localized therapy so that it can be used to deliver higher volumes of Grays to close tissues, which added to the EBRT portion will delivered higher levels of Grays capable of affecting seriously the cancerous cells in the prostate. Other areas should be covered by the EBRT alone.

I do not know the reason for choosing such protocol for you, a Gleason 8 case, but I assume that they took into consideration your other issues/problems in the groin area, so that they want to “distribute” the radiation more effectively, with lesser severe side effects to the areas with problems.

In any case, I would recommend you to find out about the field of coverage (isodose planning) so that you know that all is included (lymph nodes, etc) and should discuss about the risks of urinary incontinence, linked to brachytherapies. The field of radiation and the direction of delivery should be studied carefuly to balance the risks but also to eliminate the cancer effectively.

Here are articles about your type of treatment that may interest you;

http://onlinelibrary.wiley.com/doi/10.1002/cncr.26203/pdf

http://www.touchoncology.com/articles/combined-external-beam-radiotherapy-and-brachytherapy-management-prostate-cancer

 

 Best,

VGama

 

hopeful and opt...
Posts: 2226
Joined: Apr 2009
Cat Scans do not provide the fine difinition that a t3 MRI does....Recommend yout you receive an MRI using a T3 magnet, the best in clinical use for input on whether extracapsular extension exisits. The T3 mri is a great tool for diagnostic staging.

 here is a video by Dr. Gerald Chodak

http://www.prostatevideos.com/prostate-cancer/grading-and-staging-of-prostate-cancer/ct-for-staging-prostate-cancer/

An MRI with an endorectal coil is the preferred test, hopefully using a tesla 3.0 magnet that is found at major institutions or sophisticated radiation centers. This will do the job, and let give you a documented idea of where you stand

Will Doran
Posts: 207
Joined: Sep 2015

Fiy Fisher,

I hate to say "Welcome" because this isn't fun, But, glad you are here with all of us. 

As has been mentioned "Hopeful And", MRI's are the best way to look for bone and other problems, related to the cancer..  That was one of the first steps in the process I went through. 

Sounds like you have been really studying all the treatments and I hope you continue to do so.  Be aware of everything you will be faced with.  My Urologist / Oncologist also sent me to a Radiation Oncologist first, before I made the decision to have Robotic Assisted Surgery.  I also had a small hernia, and was told I would probably have a bigger hernia after the surgery.  And I do.  However it is open enough and will not get strangulated and thus we are not doing hernia surgey at this time.   If the hernia "comes out", I lay down and it goes right back in.  When diagnosed, My PSA was 69 with the Gleason of 7.  At first I wanted the surgery ASAP.  I wanted to do "the Seeds" after talking to the Radiation Oncologist.  Then finally decided I wanted "The Cancer Gone".  So, I went back to my first plans.  Had Surgery in Dec 2013. Turned out that because of a birth defect, "The Seeds" wouldn't have worked.  My prostste was adhered to my bladder and they couldn't have gotten the seeds in place where they were needed.   Two months later PSA down to <0.010 where it still remains.  Was on Lupron for two years and had 8 weeks of radiation post surgery. I have been off the Lupron for three months at this point, and will have blood work done in two weeks to check Testosterone and PSA levels as well and kidney function and a bunch of other things they have been checking every 6 months.  I still see my Urologist every three months at this poiunt and will continue to do that until we are sure I am in "Remission". That's the word I'm hearing , with great delight, every time I go to either my Urologist, Radiation Oncologist and Chemo Oncologist.  Time will tell.  However, my doctors don't let me forget that I was dealing and am dealing with a very agressive cancer.  They keep it real and I appreciate that. 

I hope and pray to God almighty you will be hearing the word "Remission" soon.

This is a Hard Fight.  But please don't lose hope.  Fight hard, and try to keep yourself in as good of physical condition as you can.

Best Wishes

Peace and God Bless

Will

RonJT
Posts: 36
Joined: Feb 2011

Hi Flyfisher,

Our cases look pretty similar.  Age 69,  6 of 12 cores positive, gleason 4+3 and 3+3, PSA 7.5.  I will be getting IMRT at UCSF after being on ADT for 2 months.  They have also suggested a boost later on.  I too am starting ADT in the next few weeks (Casodex and Lupron) and I know a number of men on this board have been on ADT for various lengths of time. I think it would be helpful if others could comment on what kinds of things they did to lessen the side effects of the drugs. Specifically what worked for you and what did not. Did you take any supplements and did you feel any of them helped? What kind of exercise did you do and what had the most effect in your opinion?  

Please keep us posted on your progress Flyfisher.  I am following a similar path.

FlyFisher
Posts: 4
Joined: Mar 2016

Hi Guys,

Not much change, but things are getting more defined; I met with the radiation oncologist again.  The waiting periods between biopsy/start of medicines until treatment can start is annoying, but necessary I guess.  I have been on CasoDex for 2 weeks and on Monday, 5/2/16, I will get first shot of Lupron.  That starts the clock for when I can get first radiation treatment in early July 2016.  I will have a 3t MRI on 5/18/16, which is 2 months after my biopsy.  I have concern about a sore tailbone; urologist thought maybe it was bruised during biopsy, but after 5 weeks I thought it would heal.  Oncologist is not sure.  Sometimes the soreness goes away and returns.   Has anyone else had a sore tailbone?  In July 2016, I will get radiation treatment for 4-5 weeks and then have brachytherapy done.

RonJT, I have experienced no significant side effects from CasoDex; we will see what happens with Lupron starting next week.  As for supplements, I only take what I have used before: garlic pill, multi-vitamin, Krill oil, CoQ10, probiotics.  None of which were specifically suggested by doctors.  I have changed the diet substantially; no red meats, increased fruit and veggies, additonal juices(pomegranate, tomato, red wine Smile etc.).  My exercise is mainly walking 2 to 3 miles a day.  I used to run 10 miles/day, but knees cannot handle running now.  I am an avid fly fisherman and try to spend 1 day/week walking/wading trout streams for 4-6 hours, which is a good workout and takes your mind off the problem.

Guys, thanks for all your help.  I am anxious to get on with the treatment, but at least I have some time in May to do some fishing.

Take care,

FF

RonJT
Posts: 36
Joined: Feb 2011

Thanks to Flyfisher and Will for those tips.  I always enjoyed exercise but it sounds like the 24 HR fitness at the end of the street will be seeing more of me.  I am also an ex-runner with bad knees so now it's the elliptical and bike mostly.  Seems like a little more weight work would help too.  My MRI is in 2 days.  Starting Casodex next week, and Lupron the week after.  My IMRT will start in the middle of July so I am looking forward to your insights Flyfisher.  Nice to hear the Casodex wasn't bad for you.  I hope you have similar luck with the Lupron.  

Flyfisher you may find this paper interesting as it deals with ADT/brachytherapy combo. 

http://www.ncbi.nlm.nih.gov/pubmed/22535500

RonJT
Posts: 36
Joined: Feb 2011

Hi Flyfisher

Found this article the other day that may have relevance for your treatment plan.

https://ro-journal.biomedcentral.com/articles/10.1186/s13014-016-0585-y

Will Doran
Posts: 207
Joined: Sep 2015

RonJT,

You ask about what we might have done to help with the side effects from ADT (Lupron).  Well, good luck, there isn't much you can do, so I've been told.  Others might have a different story to tell.  I thought the side effects were bad from the Lupron.  Well, yes they were / are.  After being on Lupron for two years, and 8 weeks of radiation post surgery, They had a bone density test done.  I had  gained density in all bones except my femurs, where the radiation had hit.  I lost 12% density in my femurs.  I had been on Calcium, Vit. D3, and Magnesium suppliments as recommended by my GP, my Urologist , My radiation Oncologist and at the time my Chemo Oncologist. Plus a "One a Day " for men, Fish Oil, Turmeric pills. Then, the Chemo Oncologist told me my blood calcium was too high.  It was up but later I found out it was still within the proper range.  So, she had me stop taking the Calcium.  That doctor is no longer with the hospital.  My new Chemo Oncologist put me on Prolia to build bone density and put me back on Calcium, Vit D3 and Magnesium suppliments.  I exercise every day.  80 - 100 minutes on a spinner bike, weight lifting, resistance training, some treadmill, and walking, plus working out at the gym two afternoons a week, on the weight machines, under the supervision of the trainers. You need to do weight bearing exercises for bone strength.  I have a Schwinn IC Pro Spinner bike.  You can stand up on the pedals and crank the tension way up and get weight bearing work on that kind of a bike, as opposed to one of these electronic machines they tend to use now.   You must work like this to try and battle the bone density problems that come from the Radiation and Lupron treatments.  Because of this exercise, I have actually gained muscle mass over the 2 3/4 years  since my surgery and treatments. 

So, I thought the side effects from the Lupron were bad---- The side effects from the Prolia are even worse.  I had bone and muscle aches, more frequent urination  from the Lupron, plus hot flashes, and all the other things that happen when on ADT. I was warned that all that would happen, and it did.   As I look back, that was a "piece of cake".  On the Prolia, The leg muscles, bone and joint aches and pains are even worse, and the Frequent Urination is even worse yet.  I'm up every hour at night, until about 2 AM, and then it's every two hours.    I was warned about that, from my Oncologist.  However, the Hot Flashes and Night Sweats are 5 times worse. A Hot Flashes are about once every hour and some days sooner than that.   Hot Fashes are not listed as being a side effect of Prolia.  However, My wife found, on-line, that people, both men and women, are reporting terrible Hot Flashes while on Prolia.  The Lupron has my Testosterone knocked down to 17.  I was told that they wanterd my "T' Levels at 20 or below to keep any remaning cancer cells that might have been missed by the surgery, and followup radiation, under control.  Normal for a man is up in the 250 - 900 range.   I have blood work to be done next week to test my PSA (which has remanied at <0.010 for 2 3/4 years), my testosterone levels, and a bunch of things they test on a regular basis.  I've been off the Lupron for three months at this time, but the Prolia knocked me right back to where I was.  So, As I understand, sometimes a persons Testosterone level doesn't recover after being on Lupron for extended periods of time.  If my "T" level is still so low, and my PSA is still at "0". I'm going to ask if I need to be put on a low does of testosterone.  I have read and understand that has to be done sometimes.  Someone on this site might have had experience with that.  If so, I'd like to know what they did, as well.  At this time, until I get my exercise in for the day and then either go to the gym or work in the yard or whatever, I'm bushed.  As soon as I sit down, I fall asleep.  That just isn't normal for me.  My GP is concerned about my "T" levels for that reason.  I will see my Urologist / Surgeon, week after next and I'm going to ask about my energy levels and if we need to add some testosterone.  He had mentioned this about a year back.   

So, As my doctors have watched me and my progress, they encourage me to keep up with all the heavy exercise.  In my mind, that is what has helped me the most.  Plus the support and encouragement from my wife. 

Best Wishes to all

Peace and God Bless

Will

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

The fatigue is part of the low testosterone syndrome as well as a side effect of medicine.  Remember that any cancer will drain the body of nutrients and energy as well.  Combine this with the effects of aging, and you can see that energy levels must drop.  As a body builder, I was a user of steroids unit age 81 when I had to stop due to bone very extensive bone cancer over 75% of my body.  Even with that cancer, I was doing 50% hack squats with 450 and strict one are curls with 100 lb dumbells.  I truly believe that this heavy lifting kept my bones strong even with the cancer and also is the reason I am alive today.  

  I wanted to do roids again.  I asked the doc here about TRT and he said I would be committing suicide, probably a right diagnosis.  I asked my really good doc in Singapore about TRT and he said he only gave that to his patients that were truly suffering from fatigue, and that was not the case with me and my bodybuilding program, and therefore would not recommend TRT for me.  TRT is apropriate for some.  You might look at your diet for help.  I use a product called Tegreen which I think helps.  I would also suggest a daily meditation program with breathing.  A one hour daily meditation program is a MUST DO for everyone, cancer or not.  

You are doing a lot of correct things, congratulations.  I assume your diet is also on track.  I also had to get up to pee every one hour or one hour and a half.  Now, with my PSA at 1.17, down from 300, I now often only pee once or twice a night.  I am also wondering if I even still have the cancer.  I seem to be able to add muscle at 84.  I cannot overemphasize the importance of love and positivity and NEVER ALLOWING YOURSELF TO HAVE EVEN ONE NEGATIVE OR UNLOVING THOUGHT.  Always be available for miracles and oportunity that are your birthright as a spiritual being.  One negative thought will block the miracle from coming to you because you are not available to receive.  No matter what the outcome, you cannot be a loser if you are celebrating everything that comes into your life, but do not take celebration for granted.  You have to do it, it is not a given, just as love is your portential, but also not an automitic given.

I always enjoy your posts.  Love, Swami Rakendra

 

 

 

 

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