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Newly diagnosed

silvrado40
Posts: 9
Joined: Mar 2018

Hello everyone, New member here.

 I am a 78 year old referred to a urologist after my GP found a small nodule in my prostate through a routine periodic DRE. Last DRE and PSA had been done  in 2014. PSA at the time was at .01.  The eurologist performed another DRE to confirm and scheduled me for a biopsy. He diagnosed me with 4+4 gleason 8 cancer in one of 12 cores as the result of the biopsy. 11 cores are benign. PSA is at 4.6 from 3.8 two months ago. Urologist recommended radiation with hormone therapies when he gave me the results of the biopsy. I consulted with medical and radiation oncologists and received the scary information of the procedure for inserting tracking seeds, the possibilities of incontinence, ED and collateral damage to the areas of the prostate from the radiation. They explained the other terrible possibilities of the hormone therapy side effects. I was scheduled for a whole body scan and a CT abdomen and pelvis scan which came back with no signs of metastatic disease within the abdomen/pelvis. All functions such as liver, bladder, seminal vessels bowel etc normal.

I so much appreciate the information you all provide here. I was encouraged with the results of the scans but understand by reading a post here that I may still have cancer outside the prostate that the scans may not show. I will discuss this possibilities with my urologist on March 23 in my next appointment.

Needless to say I am scared as heck. I would appreciated information from anyone having undergone treatment in a case similar to mine. to include the implanting of the fiducial tracking/targetting seeds, side effects of beam radiation and hormone therapy. How long do I have before I start treatment? Should I continue my research before deciding when to start? I have called a cancer center in another state to check on proton vs photon radiation but am finding out that differences are not that significant and I would appreciate some ideas about that too. Surgery has not been considered at this point due to Thrombocypenia (sp) Chronic very low platelets. 

Any and all information will be greatly appreciated. Thank you all. 

 

 

Clevelandguy
Posts: 471
Joined: Jun 2015

Hi Silverado,

Welcome to the club, sorry you have to join!

Do you know where in the Prostate your cancer is?  Near the edge or deep inside(4+4 is fairly agressive), that might tell you how long you have to decide a treament option.  If I were in your shoes I would be looking into Proton or Cyberknife radiation treaments.  The one thing about Proton is that it has a fixed length beam.  This means that the beam goes into your body and hits the target and stops.  With Cyberknife the beam goes all the way through your body, this could mean more tissue damage past your cancer target.  Look at the manufactures websites for info on both types of treaments & side effects.  Never had  hormone therapy but it does effect people differently(side effects).  Get studying man, do your homework.  The American Cancer Society has a lot of good info on various treatment plans you are talking about.  Good luck..................

Dave 3+4

silvrado40
Posts: 9
Joined: Mar 2018

Hi Dave,

Thanks for the information and advise. The tumor is located in the l'eft apex' whicn I understand is under the prostate pointing downwards towards the anus/scrotum. it covers 50% of tissue in the core. Do not know how deep or on the edge. Report not clear. Will discuss with urologist. 

Good advice. I am studying every day and calling referrals from local groups. I will check the ACS information too. Thanks

hopeful and opt...
Posts: 2226
Joined: Apr 2009

I wonder how extensive the 4+4=8 is, that is what percent of the core is involved. This will be listed in the pathology report. Anything else outstanding in pathology report. You need to have a copy of this report and all test results so you can consult with various specialists.

Studies have shown that proton beam is not any better than IMRT or any other radiation.

The definition of a CT scan is not great, while MRI and PET scans provide better definition. Suggest that you ask for a 3T MRI which uses the most powerful magnet in clinical use as a diagnostic image test. Additionally there are various pet scans that are available, some are covered by medicare while others are considered investigational, however are consider better imaging and are available at cost or a clinical trial.

Glad that the results of the bone scan were negative.

Suggest that ask for a bone density test. This will be a baseline indicator, which is useful when one receives hormone therapy. Also suggest a colonoscopy at this time.

Not knowing anything else, the doctors recommendation of hormone plus radiaiton makes sense. There are different types of radiaiton that are available. SBRT, IMRT, HDR Brachy, etc. Interview the various docs. 

Research,research research. Read books, attend local support groups.

Keep on asking questions, we are here for you.

 

silvrado40
Posts: 9
Joined: Mar 2018

The cancer covers 50% of the core which is 1.2 cm X 0.1 cm in diameter.  Nothing else outstanding in the pathological report that I can see except that all other cores are benign. I do have a copy of the report and scans. I also heard the same on the proton vs photons, I am still studying that. I will ask for the 3T MRI referral on the 23rd when I meet with the urologist. I will discuss the bone density and colonoscopy requirements with the oncologists when the time comes. Radiation Oncologist suggests IMRT and the dreadfful life changing hormone therapy. Will do on the research. Thank you ever so much for the suggestions and info. I appreciate it a lot.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Silvrado,

Ask your R.O if his facility has IGRT (most do, it's not new).

IGRT incorporates all of the advantages of IMRT, with additional guidance to compensate for movements of the target tissue.  The two names are loosely used almost interchangably, but IGRT is an improvement over IMRT.  Also SBRT (trade names Cyberknife and Varian True Beam) are not ordinarily used for PCa that has escaped the capsule, but doing so is (I have read) in clinical trials and review.

As several guys have mentioned, the problem is knowing where the tumor is, as imaging for PCa is not the best.

Best of luck to you and I hope you find useful info here; we have a huge number of HT guys who write regularly.

max

Old Salt
Posts: 720
Joined: Aug 2014

Yes, it does change your life, but it isn't dreadful for most (!), and for cases such as yours, it will be for 18-24 months. Maybe even shorter. Ask your radiation oncologist to show you the outcomes for radiation with and without ADT (hormone treatment). Then make up your mind.

PS: I had the pleasure of undergoing hormone therapy for 18 months. Then it takes time for the testosterone to recover. Mine came back up to a range that was reasonable for my age. But I have read of cases where that does not happen. Again, ask your radiation oncologist for the statistics on this and put that into your decision process.

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

In PCa cases, doctors usually do not recommend surgery for guys over 75. Hormonal therapies are also avoided when an elderly got some other critical health issue or are at risk of getting them (due to age). Your urologist's advice is therefore logic but the info you received from the medical and radiation oncologists has also some truth regarding the side effects.

This is what this group of survivors has experienced along their fight with the disease. We all had encounters with the side effects from the therapies and managed to survive with a certain quality of life. You will do the same. You need to educate on what is available so that you can chose what would be acceptable to you. Regarding the outcomes in terms of cure, the radicals (surgery and radiation) are the ones that can assure such a status. Hormonal treatment (ADT) is palliative and used to control the advance of the disease which is achievable for many years if one's cancer is hormonal dependent.

Radical treatments are linked to permanent side effects ldue to too much cutting or burning which conditions can improve along one's survival but that will never return to previous equal status. ADT in this regard is friendlier as once stopped our body manages to recuperate, however it takes several month (4 to 6 month at least) before one feels better. The choice surely must take into consideration the life expectancy of the individual. What's yours?

I cannot see any trouble with the insertion of fiducials (gold pellets) to provide alignment for the radiation equipment. These are essential to locate precisely the gland when delivering the rays, minimizing collateral damages and probable side effects (our organs move constantly). All types of radiation therapies have their best and worst aspects. IMRT is better when the field to be radiated is wider. Hyperfractionation type of radiation (CK, etc) seems better in killing once-for-all the bandit. The TrueBeam system informed by Max above is versatile and manages to accomplish almost all types of external photon therapies. Brachytherapy is highly recommended in contained cases when the cancer forms a solid tumor (maybe your case). It is invasive but the radiologist can spare you from incontinence risks if he avoids inserting radio-pellets close to the sphincter. Apex area is closer to the anus so that you may experience colitis. Accordingly, radiation therapies are not good if one has existing ulcerative colitis on the spot. A colonoscopy and cystoscopy are most recommended to verify the areas in the field of the radiation before any decision.

Overall the success of radiation treatment (RT) depends much on the location of PCa. Proper image exams are required to decide on the field to be radiated and you should take the time to get the best exam as recommended by Hopeful. Please note that no one here can say that were not scared when diagnosed and at the beginning of the treatment. We all go through that feeling and many fasten the process to get to a quick treatment, thinking erroneously that it will be better. 
Combination therapies involving two treatments (radiation plus hormonal) have shown to have better outcomes in terms of biochemical failure (longer period in remission). Surely one can have just the prime treatment (RT) and follow with the other when the first has failed. In this case, you can try radiation alone but you can also try ADT alone keeping radiation for future spot intervention in case the cancer spreads to critical areas.

You have time to check in detail your real present status. The next appointment doesn't need to be the last before any decision. Get advice from your family too.

https://www.cancercenter.com/treatments/truebeam/

Best wishes and luck in your journey.

VGama

 

silvrado40
Posts: 9
Joined: Mar 2018

Hello all,

What a treaure trove of valuable information and advice from each and everyone that has responded. I am arming myself daily with this information and am so appreciative to all. I will be discussing IGRT, the outcomes of HT and RT combined or separate, Possibilities of brachytherapy and proximity of the cancer to vital organs etc with my RO. I have been seeing my medical oncologist (MO) for years due to thrombocytopenia which is also affecting my quality of life expectancy and of course this overall decision options on the cancer. The RO I had my initial consultation with works closely with my MO which is an advantage. He has over 25 years experience with cancer radiation including prostate so I feel comfortable talking to him about all this advice and information I receive from everyone. Thank you again for this valuable advice. V Gamma I especially appreciate the details in your input.

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