Recently diagnosed with Gleason score of 9

Amigo SV (G)

I read the results of your genetic test and was surprised for the simplicity used in reporting the findings. I was expecting that genetic tests today would be more specific and with more definite answers to prediction, treatment failure and hereditary consequences. I wonder if all genetic laboratories report the same or if this simplicity pertains only to the gene PIK3CA found and described in your biochemistry report. They have tested 324 genes and the introns of 36 genes (segments of a DNA) but little is mention in regards to prostate cancer and I wonder why they used your gland specimen to check consequences in breast and other cancers. One could think that they have not elaborate much about prostate cancer because they did not detect the genes that identify worse cases of PCa.

I hope your medical oncologist (in May’s visit) gives you more details and describes the benefits not listed in this report, In my lay opinion the worse in the report regarding the PIK3CA gene is for the low benefit you would get from chemotherapy, in case you become in need of that in the future. It seems that this gene works as a switch in cells providing these the capability in duplication (spreading) and survival. This is probably the gene targeted in Monoclonal Antibody Therapies (mabs) which has become the choice treatment for cancer since the works done by the Nobel laureates for medicine of 2018 (Dr. James P. Allison and Dr. Tasuku Honjo) for their discoveries that have led to new medicines that activate the immune system to eliminate such survival switch in cells. This is regarded as the reason behind recurrences occurring in chemo and radiation treatments. In fact they describe in the report that this gene is associated to: “… Prostate Adenocarcinoma TCGA dataset showed a significant association between PIK3CA alteration, including amplification, with decreased survival (HR=0.55), increased regional lymph node metastasis, higher primary tumor category, and higher Gleason grade  …”

In regards to your above request on proton, I just want to say that I cannot substitute you in deciding on the type of radiation and modality. In your shoes I would chose the one that gives me more confidence and peace of mind.

My SRT experience was with IMRT but it seems that the side effects and risks are equal in both Photons and Protons. The big difference is in the capability that proton treatment has in delivering high energy (Grays) to a a predefined spot (named Bragg peak) as it manages to decelerate faster than photons. The result will be a higher intensity at the entrance of the rays in our body with zero effects in tissues standing after the peak. It can be done in a lower number of sections that IMRT to reach the same level of absorbed grays. I recommend you to inquire a radiotherapist on the matter. You may also inquire if proton becomes better in guys that have such PIK3CA gene known to be influential in the outcome of RT.

May I suggest you to copy and paste the genetic report in here to get the opinion from those that did the same test.

Best wishes.

VGama

I'm glad to know that you started the treatment. I believe that they will radiate the prostate bed and probably include some lymph nodes. The total grays delivered may not be very large due to the location as it will affect the colon. You should be ready for the symptoms usually involving short of diharea. In my case it took three months to recover.

Hopefully the treatment will free you from the bandit. Without ADT your testosterone will recover in about  4 months to normal levels. You can then verify the success.

Best.

VG

SV said:

Another nasty detail

Doctor also said that with Proton they stick a balloon up my rectum every treatment to protect it from the radiation. Is this common?

Just think, up until now we thought balloons were for kids' birthday parties.

Eric

Amigo SV,

Many guys in this forum have chosen lesser fiber diets to recover from upset bowels due to RT. However, in my case I involved diets based on soluble fiber. For instance; Black beans,  Brussels sprouts, sweet potatoes, avocados and fruits like oranges, apricots, etc. I considered my breakfast has the main meal which was a mixture composed of 100% bran (Nabisco) plus oats, dried figs, almonds and a variety of seeds, together in a bowl with unsweetened natural yogurt. A cup of strong coffee with low-fat milk.

Surely I experienced diarrhea (soft stool) but it was controllable. Your doctor can recommend you medication if changing diets doesn't improve the issue.

Best,

VG 

I agree with your decision. In SRT most of the urologists request two years on ADT for Gleason 9 guys but medical oncologists recommends 6 to 12 months only. We have discussed this in previous posts above. The aim of ADT is to sensitize PCa cells to increase the benefits of the RT. Cells die while on their life cycle so that after RT the beneficiary period would last to a maximum of 4 months. After that the effect of the RT in PCa cells is nil. Continuing ADT would just mask the living cells. PCa would become dormant for a period until refractory but it wouldn't kill the bandit.

Best,

VG 

Hi there,

I used to take walks of several kilometres a day when I was having radiation. I was on two high protein meals a day as well. This seems to be a French peculiarity. I was supposed not to eat things that would tend to result in intestinal gas or soft stools as well.
If you start to feel tired then do less exercise.

Best wishes,

Georges

I was profoundly tired, a few weeks into my radiation and hormone treatments.  However, I went out of my way not to allow my tiredness to interfere with my normal daily routines.  My daily routine did include exercise on a treadmill.  I did not push myself beyond a safe level of exercise, but I did fight the urge to say, 'I'm tired', and stop or dramatically reduce my activities.

Each person must find and choose their own path in these areas.

Hi there,

Yes, it looks good. You just have to wait and see.
The 40% covers a lot of cases from the quite risky to the pretty safe.
You just have to look at it as an adventure, I do.
Remember no one here gets out alive.

Best wishes,

Georges