Hopeful: I had prostate cancer 1... - Advanced Prostate...

Advanced Prostate Cancer

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Hopeful

Tippler
Tippler

I had prostate cancer 11 years ago and was treated with cyber knife radio surgery. PSA stayed around 0 for years. Last year, in 2017, I felt constipated, I had some difficulty urinating. I saw a Urologist. PSA was almost 7. New PSA(one month later) was 5. In May of this year a GE doctor detected a mass on my colon/rectum. By July 2018, after many diagnostic procedures, I was told that I have Advanced Prostate Cancer, with a tumor de size of a baseball on my colon/rectum(overflow of the prostate cancer) and a lymph node in my pelvis that was cancerous. In July I was given two injections of Firmagon and the pain in my lower abdomen disappeared within hours!!! One month later Lupron for three months and I started with Zytiga in September. PSA was 0.9 two weeks ago and I feel good, except for being fatigued. I am 68 and I am anxious to work part time.

30 Replies

Did you have a PET scan? Can they irradiate the mass and the pelvic lymph nodes?

So glad for your immediate pain relief and how well your new treatments have worked. WooHoo! I hope your eagerness (as opposed to anxiety?) to work part time goes well for you.

Charles

This reminds me....

In my experience, the transition to a Stage IV diagnosis was a big shock. The impending evolution of my former roles/capabilities in life in the time ahead brought up lots of different feelings. In support groups, I have also seen anger and resentment and fear in men who have to make transitions in their jobs and careers sooner than they would have liked. I have seen deep sadness and a sense of loss in myself and in others as capabilities slowly changed due to disease/treatments/side effects. Talking about such things with close family or in support groups, and perhaps doing some life planning and planning for transitions/workarounds, in my experience, have been positive, helpful things to do. It takes some vulnerability, courage, and time to express these emotions, to feel and live with them for a while, and to deal with them in due time.

There is lots of collective experience here on issues such as working with cancer, qualifying for or claiming disability benefits, doing retirement/estate planning, etc. Do feel free to tap into it for whatever may be most on your mind in the next few months ahead. It isn't all just about the doctors and the medical treatments. Who we are and the Quality and Meaningfulness in our lives are so much more.

Tippler
Tippler in reply to ctarleton

In May of this year I was told that I might have colon cancer with metastasis(liver, lung) and before going to M.D.Anderson I had a colonoscopy, which led the doctors to another diagnosis: carcinoid syndrome. After more biopsies, I was told about advanced prostate cancer.

Hidden
Hidden in reply to Tippler

That s super scary.

Hidden
Hidden in reply to ctarleton

Great sentiments.. Thanks

I had a PET scan in July 2018. No flares were revealed anywhere else in the body, except for the prostate, tumor on the rectum and a lymph node. Radiation wasn't discussed(yet).

Hidden
Hidden in reply to Tippler

It may well be now.. and it can work.

If you went 11 years undetectable, your cancer must be very slow growing..The treatment you are doing now (ADT) may control your cancer for a long time..By now, you must have had many discussions with an Oncologist about what your options are..It might be worth a visit with a Radiation Oncologist to see if radiation treatment is a possibility, regardless of what the MO said..

If I had a dollar for every man that had undetectable PSA after an initial treatment for more than 5 years and then lost it--to a new advanced return---I would not have millions--I would have hundreds of Millions. The TIC/or stem/dormant Pca cells--do not die easily--by any treatment--except where surgery gets every one of them out of the body--that is if you can prove total removal. It takes one stem cell left behind, to wake up one day and start the process of dividing and multiplying--now I know you did not want to hear this--but we here are all subject to the same thing that has occurred with you. Anyway--Prayers for your following treatments.

Nalakrats

Hidden
Hidden in reply to Nalakrats

Tenacious little CS..

Yes! My urologist and Oncologist are realistic: (RP, going on 8 years on Lupron, PSA (0.00)). No “5-Year Celebration” (as if “I’m cured!”). Am always told that the PC will return ... and we are just waiting ... but we have more (good) therapies to shoot at the cancer when it returns (with PSA numbers riding). Be real in this trip. I was totally devastated (!!!) from the initial big “C” diagnosis, and I don’t want, nor do I need to go through that trauma a second time with a reoccurrence after fantasizing, believing that I’m cured (Lupron every three months with a PSA test).

(I feel that even with a PSA (0.00) the cancer cells left behind (too few to detect) have mutated into the more aggressive forms after 8 years ... into cells that don’t produce PSA [EMT, stem-cell] as subsequent lesions have been detected: 3 on the liver, adrenal gland, in a vertebrae(pain), pain in the shoulder blade, and now aching pain in a rib. I totally hate this, my life is ruined, I’m tired and worn out, so I’m drifting with Lupron and a PSA of (0,00).

I go to Pain Management (bone pain), and with narcotics, while living with cancer, one can still have a smile on one’s face.

In the last couple of years--there has been a surge of research--into finding ways to kill the Dormant---Stem--TIA--Metamorphic Pca cells. There is a whole new science---why has it taken 40 years for our Medical Industrial complex to figure out---that if you live long enough, your Pca will return. True many men die of something else--but i have documented proof--given to me verbally from Doctors who would not discuss the cases, but tell me they have men with returning Pca after 20 years--and my MO has one that went 30 years.

So we have the ability in a lot of men DX earlier enough, or treatable enough, to get them into the area of undetectability as to PSA--only to as in your own case, start the watch for the return.

So while we wait for an Immunology answer, for our T cells to eat up the invaders, including the ones we cannot see---the short term answer in my opinion is to find a way to kill the undetectable stem cells--or as many Docs. will just call, for us ignorant patients---the Dormant Sleeping Pca cells.

Nalakrats

Lyubov
Lyubov in reply to Nalakrats

The doctors should stop giving out false hope by saying "you're cured." Maybe depending on each individual situation, something like "you're in remission (still in remission), you could remain in remission for . . . years, etc., die from something else, but bottom line, I/we don't know. We have other treatments now/down the road. . . . They just must stop setting people up for the possibility/likelihood of the "awakening" of those dormant PCa cells.

Good information.

Hidden
Hidden

That firmagon is good stuff.. keep that PSA down ..but stopping that pain is a miracle..

so what is your question. your going to have to monitor it from now on. u have many options and remember u will die from it, its just a mater of time and what drugs are still available

Encouraging post!

Hang in there my friend. Sounds like your beating the monster for now . Fight the good Fight

Tippler
Tippler in reply to larry_dammit

Definitely! In May of this year I spent two weeks knowing that I had colon cancer stage IV with metastasis(I have a cyst in my liver and a "spot" on my right lung, which are not cancerous, yet). I paid bills, helped my wife renew her professional license, read the Bible, reviewed a mental list of all those whom I will see again when I go. I found peace. Now, it will be a number of years, not months, before I will exit this world. It is a matter of of years for all of us. I became Vegan for the most part, Lab.results are all good. We can do certain things, but what matters is what God has in His plan for us.

Geez I'm getting depressed again... So to change the subject here's a question/humor/answer for you all.

Question: What has 16 balls and sings?

Answer: A quartet.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 11/20/2018 8:55 AM EST

Sorry to hear about the monster. Stage 4 prostate with Mets in the ribs spine and lymph nodes. I did the same 27 months ago when they told me I had s 50/50 chance of 5 years. Done give up. As my doctor says no one wants to have cancer but there has never been a better time to have it with all the advanced medicines today. Good luck with your battle against the monster. 🙏🙏🙏🙏🙏

What was your Baseline PSA? And your Gleason Score...and your Clinical Score...curious to know more about your condition.

Feel better!

Tippler
Tippler in reply to DoggieDaddy

PSA was 3.4; Gleason score:6-7, Urologist said:5(or so). Stage II according to the Pathologist; Urologist said stage I.

Tippler
Tippler in reply to Tippler

Gleason score was 7(Pathologist); Urologist said 6

Tippler
Tippler in reply to DoggieDaddy

I don't remember the clinical score. I had 2 tumors: 9mm. and 4.5mm.

Just curious: when you first were diagnosed 11 years ago what was your Gleason score, Psa and stage?

Tippler
Tippler in reply to Break60

Gleason score was 6-7(Pathologist); Urologist said 5. PSA:3.4(it grew 0.7 from the previous year!). Stage II(Pathologist). Stage I according to Urologist. I had 2 tumors: 9mm and 4.5mm in diameter.

Break60
Break60 in reply to Tippler

Yes you had reason to believe ,based on your stats at the time, that you had been cured . Gleason 7 is higher risk if it’s 4+3 than if it’s 3+4.

It’s got to be a real shock after 11 years of zeroes. Us high risk guys never get a break.

Best of luck !

Tippler
Tippler in reply to Break60

Thank you! Honestly, some numbers come back(kind of!) to me, but I do not remember everything from 11 years ago and I have no desire to look for records etc. I learned in AA about living my life one day at a time. It is what it is! No worries.

Break60
Break60 in reply to Tippler

You’ve got that right! Keep on truckin’

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