I guess I have a rare form of PC that does not report PSA. This summer started having problems peeing, like blocked at times. Google told me it was BPH and started taking some natural supplements. 45 days later finally called Teledoc, and was put on Flomax. 45 days later finally go to Urologist. He know with the physical finger exam, this was cancer. Very abnormal feel. Peeing problem getting much worse.
Initial biopsy showed Gleason at 8. Went to CTCA for treatment.
Two weeks ago had a TURP procedure done to open things up, and finally - relief! Tissue samples taken and final pathology report defines my cancer as Prostatic adenocarcinoma with ductal differentation. Gleason score at 9 .
This cancer has made my prostate swell to one side and has attached to my rectum, actually bulging into it, making this inoperable.
So my 2021 will begin with a treatment plan of ADT with Firmagon 240 followed by Lupron. Further meeting next week with Radiologist for other possible treatment...
Diet changes made already - Mediterranean diet, added juicing, added supplements. Cut out the processed foods and sugar.
Any magic ideas at this stage to consider?
Any special diet web sites to reference, or absolute foods to avoid? Is ice cream really off the list? ( JK! )
Much appreciate any thoughts or advice.
Dave
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DMohr011
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Firstly...just having "ductal differentiation" (weird term) does not necessarily make PCa very aggressive. Yes. Gleason 9 can give the cancer a bite because Gleason 9 has tendency to metastasize faster.Food to totally avoid, ,IMO...all animal fats and Animal protein. Exceptions are some moderate amount of Milk and Yogurt..and Of Course.a little scoop of your favorite Ice Cream. As far as sugar is concerned, watch the video on youtube By Dr Mark Scholtz titled "Does sugar feed prostate cancer"? Very accurate info.
Warrior, get ready..the fight begins now...The most powerful weapon in this fight is called "Right kind of Information"
Ductal differentiation means the tumor is more likely to spread than the usual prostate cancer. Did you get a CT scan to determine whether there are bone metastases? Otherwise try to get a PSMA PET/CT to see where the metastases are located, I doubt there are none. When metastases are present, you can add Abiraterone or a Chemo to the Lupron treatment.
I would not get the rectum radiated. The radiologist should refuse to do so.
You have a very aggressive cancer, changing the diet will not make a noticable difference.
I suggest you see Dr. Kamrava for a second opinion. You have difficult situation to treat and you cannot expect this to be done properly in the hospital near you.
Ductal is always aggressive, but not incurable. I think you should talk to a radiation oncologist who is experienced with a special kind of radiation called brachy boost therapy. They use a combination of external beam radiation with an extra dose of brachytherapy to the prostate. 18 months of hormone therapy is done with it. Because of the TURP, the only kind of brachytherapy you can use is "high dose rate" brachytherapy - that means temporary implants rather than seeds. It may be hard to find a nearby specialist - where are you located?
If you can't get to an HDR brachy therapist, an alternative may be SBRT monotherapy. It would be experimental in your case. It involves only 5 high-dose treatments.
The cancer at your rectum is a complication for radiation too. Rectal tissue is sensitive to radiation. Sometimes they can use a spacer (like SpaceOAR) to protect the rectum, but in your case it might be dangerous - the spacer can penetrate into the cancer and protect the cancer from radiation. It will require very careful planning on the part of the radiation oncologist.
Located in Phoenix and seeing Cancer Treatment Center of America. Thanks for the input, good to know. I'm seeing the radiation dr next week. Will discuss brachy boost.
They probably don't offer HDR brachy boost there. I suggest you arrange a telephone consult with Mitch Kamrava at Cedars-Sinai. It is certainly possible to get the HDR brachy done in a single visit to LA and the external beam done locally - Dr Kamrava would plan both and coordinate with your local guy. I know for a fact that he is very aware of the problem of cancer at the rectum.
I had a bout with a rectum tumor and tailbone tumor years ago. In retrospect I have come to believe it was caused by the biopsy. I had a biopsy G8, then chose rad therapy to the prostate in 2008, (It was well distributed, small, confined to prostate). Fortunately the rectum-tailbone soreness in 2012 (four years after biopsy) lasted for a short time. It was different from yours because my PSA rose to 10 over a six month period. Both vanished in a month with three things: Lupron, Casodex, and a diet rich in lycopenes. Now I know your case is a different thing so don't jump to conclusions. I am not a doctor so I am unknowledgeable about all the various types of prostate cancer. Mine is definitely the run-of-the-mill type, which responds well to testosterone starvation. Yours sounds like something entirely different ( different kind of cancer), but if there is a prostate cancer that does not raise PSA then it has me confused. Learn something new every day.
I was diagnosed gleason 9 (5+4) when I was 58. Caught it early, did hormone treatment (Lupron, Casodex, etc. and Radiation. Have survived to 75. Had bone metastasis 5 years ago but Anschutz treated it and seems ok now.
Agree. Lynch syndrome does run on moms side- she tested positive and battled colon and uterine cancer, lived to 72. Uncle and aunt positive too. My brother is positive and sister negative. I do carry the Lynch gene as well.
Southwest oncology. Dr Gordon Grado. Located in downtown scottsdale. Strogly recommend you consult him for local second opinion. He is radiation oncologist.
Welcome to the forum.. there are some gentleman here who are experts ( I amNot one of them ) on these topics because they themselves are survivors of PC . And they have studied , researched , lived through a wide variety of treatments and understand the situation. In which you find yourself. And.. they do genuinely care .. best of luck .. this is a lifetime challenge
Thank you for the input. When i think about me, i try to think about everyone else who is more f'd up then me. Always can be worse!
You might want to research HIFU. It is a non-invasive treatment that I chose four years ago. I was considered 'in-operable' for RP after prior TURP surgery 10 years prior. There are some on this site who hate HIFU.
There are no cure all magic bullets but the more chances you put on your side, the better the odds that something will agree with you. I've been battling a Gleason 8 cancer for a nearly a year now and while I have not cured it, I feel healthier and look younger than I have in 15 years at least. You might want to look into water fasting, eating WFPB, Cannabis oil, artemisinin, epigenetics, meditation,....
The following books have helped me a lot in not being as afraid by my situation as I initially was: "never be afraid of cancer again", "cancer is not a disease (it's the ultimate survival mechanism)", "radical hope", "radical remission", "Chris beat cancer",...
Very important to remain positive indeed as stress and anxiety, though understandable when faced with fear, will bring down your immune system. Despite it all, you must still find ways to laugh and be grateful for the things that are good in your life.
If you have Netflix, I'd also recommend watching the documentary named: Heal. I almost stopped in after the first 5 minutes before it looked silly to me up to that point. But then the other things they showed afterwards were quite interesting as they show the multiple pathways that most holistic cancer survivors have in common (and probably what lots of survivors who went for western medicine might have done as adjuvant therapy).
I'm not a doctor and have never played one on television, but I'd like to make a comment and allow others to let me know if their opinion differs. I was diagnosed Gleason 9 with multiple mets to hips, pelvis, and spine, no remission & no cure (2015). I was waiting for a plane to take me to CTCA Phoenix for treatment. In the terminal seating area to my immediate left sat an older woman who identified herself as a professor emeritus of a distinguished LA teaching hospital that enjoys a fine reputation for treating cancer. She warned me of going to CTCA, which I found sort of ridiculous. I didn't want to argue with her but I felt she was being rather snobbish (which is understandable, I guess, since one should have loyalty to their own practice. I was responding very well to the Standard Of Care and I felt that any hospital who subscribed to the NCCN guidelines could give me much better than adequate care. People who have not experienced the enchanting level of care and concern I experienced at CTCA might not understand the lure. Unfortunately, COVID-19 has, at least temporarily, knocked me out of their care as they encouraged me to seek local oncology in the LA area to free up space in their facility for local cancer patients who were no longer going to be served at their normal local hospital because of the hospital's focus on COVID. My new oncologist is following the same treatment regimen CTCA had been supplying. I hope CTCA treated you, DMohr011, with the same expertise and gentle care I received!
P.S. I realize the cancer you are dealing with may require the services of an absolute expert in that particular form of cancer!
So far my experience with CTCA has been mixed. But mostly good. They have been super in getting the TURP done within week of meeting the Urologist. That was done on 12/12. Since then zero follow up or discussion about the final pathology. I am assuming the radiation oncologist will go over. I have appointment this week.
Not sure the TURP would have gotten done that quickly if I had to schedule thru a hospital with all this Covid going on, so definitely a plus there with CTCA.
Had phone meeting with another oncologist who recommends the Lupron/ADT treatment a few days after turp, but before pathology. Hopefully i get a good feeling and and am comfortable with their level of experience and recommended treatment plan.
If not, From what I'm hearing, best to explore all options and get second opinions from very experienced radiation oncologists who do this all day long.
Met the Radiation Oncologist today. Recommending IMRT, but need to wait 3 months or longer due to recent TURP. Also recommended getting started on the Firmagon/Lupron asap. Staged my PC at IV .
Brachy Boost high dose and low dose not an option, due to tumor pressing into rectum...
I told him about my diet, lifestyle and exercise changes. He really didn't seem to think it would make that big of difference. I don't agree....
Probably a typical Dr's response. ..
Am going to get second opinion from Dr Gordon Grado - thank you @RCOG2000 .
Thanks for all the comments and support!
You'll get the full list of supplements from the supplement peeps on this site. For me, made the same changes to diet ad you did and took some supplements but slowly dropped them because IMO they are a total waste of money.
I'm GS 9 just like you. Most of the supplement hawks are GS7, at least in my encounters.
Good Luck with your treatment decisions, whichever you decide.
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