Am I doing enough?

[rogerandme]

Started lupron and Xtandi RO says to many micromets to extensive to radiation says wack a mole…MO says adt til failure then move on to other drugs… am I doing enough

[Tall_Allen]

prostatecancer.news/2021/05...

[2dee]

This is the SOC and generally works for some time.There are some other arrows when this combo runs it's course. Enjoy the extra time you have.

2Dee

[cesces]

Sounds about right

[Magnus1964]

There are other ADT drugs that could give you many years of quality life.

[Hidden]

Below is my opinion and is not necessary the opinion of many.

Sounds what I hear as SOC by many oncologists. You have to decide on the skill and knowledge of your treating oncologist. In my opinion second guessing is not good for your mental health. All make in roads in this terrible disease with varying degree of success. The treatment that I received and that of many others has little bearing in your treatment. Many of the silver bullets available today for metastatic prostate cancer were not available when I was DXd in 2004. As a result there is great discussion as to the best course.

Omitted from most discussion is time of overt metastasis to treatment and the concept of micro-metastases. There is a very large segment of men who find out that they are metastatic at their initial DX of prostate cancer. Unfortunately I believe that this factor plays into both treatment and long time survival. Today’s treatment is based on this large population. Generally speaking systemic treatment is needed to attack both the seen and unseen cancer cells in one’s body.

A major factor is health of the individual. Those with co-morbidity issues are at a distinct disadvantage as their body is not strong enough to withstand the rigors of systemic treatment. In other words, what is great for me may not be great for my neighbor. This alone accounts for the concept of attacking the tumor burden through systemic treatment while the body is strong with withstand the rigors of chemotherapy. The longer one waits gives the tumor time to multiply all the while ravishing and weakening one’s body.

SOC is based on the masses and not on the few who through tracking know when metastatic lesions first rear its ugly head. And that is not accounting for micro-metastasis already existing.

Another factor is the knowledge of the medical oncologist. Is your guy a generalist who treats many types of cancers or a specialist who only treats geniturologic cancer? Is your guy a community type oncologist or an academic type oncologist who spends his time in specific research, teaching other oncologists in a medical school, and clinical practice of his “guinea pigs”? Who is at the top of their game? Understand that available resources and time will enter into your quest.

Unfortunately academia type oncologists are few and far a part for most. Hopefully the guy who specializes takes the time to read, attend seminars, and take continuing education in their craft.

Finally the most important question that I asked my two Radiation Oncologist upon learning that I was metastatic to T3 & L2 (both initially offered up the standard Lupron injections) was, “Doc, if you were in my shoes with newly found metastatic lesions, what would you personally do?” Both thought for a moment and responded that they would find the best damn medical oncologist available who specialized in prostate cancer and prostate cancer only; not one who treats other cancers. They are the guys at the top of their game and know about current and further advances. I found my guy through referral in academia - a Professor and Researcher on genitourologic cancers.

I was most fortunate and my treatment, termed by the dean of a major medical school as “extra and advanced SOC by a person who was a world class researcher of prostate cancer in that he had greater treatment flexibility”, is essentially not available to the greater bulk of those with our disease.

With that said, even the clinical trial in which I participated only had 15% complete responses at two years. Me? I have had a complete response for over 17 years. I am the exception - some say antidotal - but understand that within two months of metastatic lesions found (I was tracked monthly after primary treatment), I entered into the chemotherapy with hormone therapy clinical trial. I have posted an abstract previously.

If I were in your shoes, I would share the studies that Tall Allen posted a link on the early intervention of Docetaxel with your guy. He may not be aware of the results. Print the results of the study give to him and then have a discussion after he has had time to read.

Do not worry about side effects nor let that be a determining factor as modern medicine is available to handle should they arise. Subject to co-morbidity, do not fear chemotherapy. Also, involve your Cardiologist regardless.

Remember that you are a Statistic of One. It matters not the results of others. Yours is the most important result for you and your family. With that, I wish you the best in fighting this bastard of a disease.

Gourd Dancer

[rogerandme in reply to Hidden]

Thank you so much very well thought out… I guess I have still been in mode of letting my doctors dictate my treatment instead of taking more control of my situation… your response to this disease is amazing and it is is a testament to your take control approach…. Congrats on your longevity… after all this time what is your qol like….

[Hidden]

Thank you. However, the only control I exercised was to move on to uniquely specialized guys. I followed by ROs and MO instructions to the letter. No shortcuts.

One other point. The cure for cancer was found in 1978. The problem was that the treatment killed the patient first. It’s a fine balance to kill the cancer and not kill the patient.

Best Wishes