I'm wondering if anybody has gotten "cancer free" results? If you have, please tell me about your treatment....both medical and whatever you've taken upon yourself to do.
Cancer free?: I'm wondering if anybody... - Advanced Prostate...
Cancer free?
Written by
DaC00tie
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48 Replies
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How does one judge if one is "cancer free"?
Off medication and PSA is zero and not rising.
Well. my PSA is steady at 0.1 8 years after SBRT - I'm not sure if I qualify
Do you eat meat and dairy products ? Regularly, sometimes or not at all ? And, if not, why not ?
Thank you very much for any reply you may care to give.
Yes I do - regularly - I'm cured- why would I deprive myself?
Thank you for your prompt reply.
Your reply seems to indicate that had you not been cured, you would either not be eating meat & dairy products or restricting your intake. If I am right in making that assumption, does it follow that meat and dairy products are not good for PC patients ? And, if that is the case, shouldn't even "cured" PC patients be cautious about eating red meat & dairy products ?
Thank you.
Was your cancer non-aggressive? What did your onc do to halt its progression? Nothing seems to work for me for very long. I fear I wont make it to 60.
Did you keep your prostate?
Yes I had GS6 in 8 of 17 cores. I had SBRT. I still have my prostate.
Can u advise me? I know you're not medical practitioner. I have gone almost 6 years. I have a Gleason 9, PSA 31 at diagnosis, M1, doubling 5 months. I spent 2.5 tears on Lupron (Casodex for flair for a few weeks). A couple of Zometa treatments for osteopenia. I was at 0.1 PSA. After 2.5 years PSA went up, so they added Xtandi in a clinical trial. My PSA went from 2.8 to 0.02. , it stayed there for like 3 years. I started getting sinus and upper respiratory infection which has been coming and going. Cat scan shows a bud on my right lung. I have coughed a lot. Sinuses show signs if infection on and off. medical literature on Xtandi says sinus and upper respiratory is a common side effect. It's been treated with antibiotics. Doctor's don't seem sure what's going on treated with antibiotics, and it shows improvement for awhile then it's back. I'm near Boston, should I go there for another opinion? Right now getting Xtandi at NIH and Lupron in NH near Boston.
It sounds to me like you are getting excellent care where you are. If you are still getting Zometa, consider adding Celebrex. I know that sinusitis takes on a life of its own and is very hard to treat. I sometimes find a neti pot helps if I catch an outbreak early. Otherwise, it just runs its course.
DarrylPartner
Once you are diagnosed with prostate cancer, you will be a man who will forever be vigilant for prostate cancer .... tests till you die, and for many, additional treatments. That’s a good thing—turning prostate cancer into a chronic and hopefully manageable disease.
After twenty years of working with prostate cancer guys, I can tell you the ones who loose additional years and or a fuller life are the ones who walk away from vigilance—-until they feel metastasis induced aches and pain.
in reply to Darryl
Words of experience..Thanks Darryl !!
So true. I had a rising PSA for a year and a half after 4 years of post RP undetectable readings. I stopped going to my urologist after those first 4 years thinking I must be cured! I relied on my “men’s specialist” PCP to monitor my PSA for a PCa BR, as well as my oversee my general health. Big mistake. Last summer during my routine annual physical, I got the bug to ask him to see my blood results. I hadn’t done that since I stopped going to the Urologist. This was just before I was ready to walk out the door with a clean bill of health from him. Sure enough, I saw a .67 PSA reading that unleashed hell in that office! I demanded all blood test results since I stopped going to the Uro and saw the rise from undetectable to .67 should have been noted and relayed to me as early as 18 months previously. By the time I was able to get my cancer team together, the diagnostic scans done, and the ADT/radiation treatment started a month so after seeing that .67, my PSA had already risen to 1.06. Odds of curing a BR statistically go down once your PSA gets much over .5. I could have gotten to treating my BR months earlier, and increased my chances of a PCa cure significantly, if I had not trusted my PCP to do his job monitoring what he clearly knew was my biggest health risk by far.
God must have whispered in my ear to look at my PSA reading on those blood test results last July. Had I not done so, I’m sure I’d be in alot worse shape than I am.
Cancer free now for over eight years. Prostate removed - slight seminal vesticle invasion.
Also had radiation treatment and then hormone therapy treatment for several years. I do get my PSA checked every six months and has been at zero (0) all of the time.
I consider myself very fortunate and thank the Veterans Administration for such great care.
Residual problems but considering the alternative I can bear them.
in reply to jgmcbride
You payed some dues.. great results. More power to you ..
Hi,
What was your Gleason score?
4 + 3 with seminal vesticle invasion.
Latest checkup - two weeks ago - PSA is still zero.
What stage is your cancer? How long have you been off all cancer meds?
It’s a matter of semantics. If you are Stage 4 with distant mets, I would be reluctant to use the term “cancer free” since you could have microscopic tumor cells wandering around inside you. For the past 3 years I’ve had undetectable PSA, single digit testosterone, and a single bone tumor that has failed to light up the PET scan for over 2 years (last done in 07/18), but I still take Lupron and bicalutamide, and don’t consider myself to be “cancer free.” And, at Stage 4 with mets, my cancer is still considered to be incurable.
I’ve seen several sources recommend drastically curtailing red meat and high fat dairy. Even healthy people should restrict (but not necessarily totally eliminate) their dietary intake of red meat, processed meats, and high fat dairy products.
Sounds like you are doing well. Keep it up! But remain vigilant.
low fat has been admitted to be a false warning that went on for 30 years. I find it best to ignore the FDA since it is now run by big corporation employees on loan. It no longer has ALL americans in mind when making decisions. IMO.
Adlerman,
This low fat bullshit has been peddled by the FDA for far too long, imho. Dishonest scumbags. Imagine the American Diabetic Association telling its diabetics that their diet should comprise 55-60% carbs !?!? I agree with you. Disregard the FDA. They are criminal liars, for the most part.
The only "cancer free'" patients would be those whose cancer was detected early enough and had a prostatectomy then maintain a PSA of 0.00. All Prostate cancer patients continue to monitor their PSA for the rest of their lives.
I would hope all 'men' (~50+) continue to monitor their PSA for the rest of their lives, whether you've been diagnosed or not.
There's more than one treatment that gives the results you mentioned. I had cryo in 2002.
Still have my prostate and have had PSA less than 0.01 for 16 years. Gleason 8 at diagnosis, cancer confined. Nerve bundles were the only casuality. I have no financial interest in cryo but find it baffling that it is totally ignored. I've heard that nerve sparing is also now an option- if there are no tumors near the base.
Glad to hear that you have a great outcome with cryo.
in reply to adlerman
Fantastic ! Great job ..
10 years ago I was diagnosed with prostate cancer. I had the laproscopic prostectomy and they doctor said he got all the cancer. For the next 10 years I was not taking any medication (since I didn't have cancer {allegedly}) and my PSA score was checked every year and was 0.0 Then last december.....guess what....PSA 14.1, then in climbed to 23.8. I was put on Bicalutamide for 30 days and it dropped to 14.4. Then I began the Zytiga and Prednisone and my next PSA score (taken a few days ago) is 0.4. All this is consistent with what the doctor has told me. Metastatic Prostate Cancer. He informed me that the medication would drop my PSA score and kill the cancer cells, except the stem cells and/or agressive cells. And that the medication would stop the cancer cells from growing and spreading. Which is consistent with my test results. But (hate to use the word)....he also said "the cancer is still there"...."it's just not growing and spreading, right now". but (grrrr)......"it will"
i had a dear friend who had a bit of a rise in his PSA and because he was black... and his brother had died from Pca.... decided not to tempt fate and had it removed. he remained cancer free for almost 20 years...PSA 0.00. Then one day his neck began to ache..not unusual, he thought for a studio cameraman, lugging heavy cameras on one shoulder. he had x-rays, MRIs and physical therapy for the neck pain...it only helped a little. A year later, they found his lungs and brain riddled with tumors. They were prostate cancer.
Did your friend get treatment for his disease recurrence?
after they found the lung tumors they discussed treatment, but ever so shortly thereafter the tumors in his brain appeared and they attacked them with radioknife but they were growing and multiplying so rapidly he just quit treatment, or as he liked to say, ''treatment quit me.'' no one ever suspected it was prostate cancer redux until they biopsied a lung tumor and within days the tumors in his brain appeared.
in reply to wifeofvet
Sorry about your friend. Hope those 20 yrs given we’re happy ones..
in reply to DaC00tie
That 10 yrs no meds, surely that was positive for you. I consider that not growing not spreading is awesome.After your long experience with this animal you understand it’s nature is tenacious to say the least . My story of starting out with kidney failure stage 4# Mets to bladder 2lymph nodes lit up , urethra shut with pc tumors (thus the kidney failure) then 2yrs with bi lateral neauphrostmy tubes and foley. Pure hell for anyone in that condition. My plan was solely palliative to improve quality of life , ie; shrink tumors enough to remove tubes and pee again .50/ 50 chance given of surviving treatments including adt and 2months RT. Whoo hoo ! It worked so far. Thank god! So now my attitude is appreciation of the reprieve that I’ve been given in full knowledge that when the bitch returns to my door it’s coming to kill me . I’m living looking for daily happiness all the time knowing that our time is short here on earth ...call me superstitious or I just don’t want to press my luck , but I would never use the word “ CURe” pertaining to myself. While I have no visable signs and neg- PSA . I’m a believer in miracles but a realist would say that most of us once advanced won’t ever be able to give up “vigilance “ if we want to continue living. End stage , if something else doesn’t get us first, we will all give in and capitulate if it’s in control of us. Live well and be healthy as possible..
8 years after surgery, I did radiation and Provenge and thought I was cured. Super sensitive PSA dropped from 4 to undetectable for 6 months and I was off all drugs except Vit D and statin meds for cholesterol. All bone scans clean indicating I was cancer free. PSA came back after 7 months. Let it run amuck for a while and then started up hormone drugs again.
Go for it guys. Wish I could say the same.
Cancer free? The difference between love and cancer is: Cancer is forever!
Good Luck and Good Health.
j-o-h-n Saturday 08/18/2018 11:37 AM EDT
I was treated with ADT + HDR brachytherapy + external beam radiotherapy almost 15 years ago. It took five years for my PSA to bottom out at 0.08 and it went up once again in year 7, but I've still needed no other treatment since 15 years ago and my last PSA reading was back at 0.08, where it has been since year 8 or so.
Am I cured? Maybe.
Alan
No ongoing Lupton shots or any hormone therapy? Also did you change your diet at all? Supplements?
Have you attributed your long term success to something other than your treatments years ago? Your story is very encouraging, and thanks so much for sharing. Keep up whatever you are doing right. 👍
My hormone therapy lasted less than six months in 2003 and 2004. I have not had any hormone therapy or any other medical treatment for cancer since then.
I have not really changed my diet. My diet isn't too bad but I probably eat more carbohydrates and fewer fruits and vegetables than I should. I never gave up dairy and still eat a bowl of cereal with milk every morning and I eat a lot of cheese. I'm not a big meat eater but probably eat fish a couple of times per week.
I did take some supplements including lycopene, green tea extract and others that were recommended back in those days but don't seem to appear on today's recommendations and I've given those up. I do take 1000 units of vitamin D these days and also curcumin ("Curcubrain" brand recommended by Patrick O'Shea - see below), fish oil, and some other supplements, more for brain health than anything else.
Personally, I attribute 100% of my success to the treatment. I don't really believe that my diet or supplements had anything to do with it. I'm not against them. I think there are some that can help. But I believe the help they provide is small and only effective at slowing down growth of cancer, or possibly reversing it in men with very poor diets much in need of improvement and with very indolent, low risk cancers.
That's not to say that there's nothing a patient can do. If his diet is poor he should improve it. If he smokes he should quit. If he's overweight he should cut back. If he never exercises he should start. He should be sure he's getting the vitamins and supplements that are recommended (though our knowledge of these is still elementary, the recommendations keep changing.) I think all of these will help slow down cancer growth and lower the risk of other cancers, but I haven't seen any real evidence (numerous self-promoting books, websites and YouTube videos to the contrary) that anyone can cure any cancer with diet, supplements, or exercise.
For tested advice on supplements I'd look at the NCI web page on them. See: cancer.gov/about-cancer/tre... There's also a less scientific patient version. I also have a lot of respect for Patrick O'Shea's postings here on HealthUnlocked (pjoshea13). I believe he has a lot of scientific knowledge and experience in this kind of research.
If you're hoping to avoid treatment, please don't. The best current treatments can't cure metastatic PCa, but they can often cure localized, or even "oligometastatic" cancers. And for metastatic PCa they can often slow it down. Some lucky men have gotten very long term, even decades long, remissions from today's sophisticated treatments. Early treatment works better than late treatment. Get help early and from the best medical oncologist you can find!
As for diet and supplements, exercise and lifestyle - sure. Go for it. Read the studies from the best sources you can (like NCI and Patrick.) However, be very skeptical of the any advice that says you can be cured with diet or supplements. Also, be sure to mention any diet and supplement changes you are planning to your oncologist. Some doctors don't know anything about this but some do and sometimes they can warn you about things that might conflict with prescription treatments you're taking.
Like yourself, I too and all of the other folks on this list are hoping for the best for you.
Alan
in reply to AlanMeyer
Heck yes Alan! Sage advice.. Thanks.
in reply to AlanMeyer
Wow, I love to hear your story that I consider one of success.. Thank you.
Hi AlanMeyer,
Have you been eating red meat and dairy products during the last few years ? I ask because I would like to figure out whether there is any definite connection between the consumption of red meat and dairy products and prostate cancer.
Thank you for any reply you may care to give. Cheers !!
All my life...."normal" diet. I didn't change anything. I just continued eating the same things that I've eaten for the past 40+ years. But lately that's all changed. Rethinking and restructuring my diet.
I have eaten dairy products since birth, always liked them, always ate them, including the last few years. Red meat - not so much. I do eat it but only in small amounts and not often.
I don't think it will be possible to figure out any definite connections between diet and cancer from individual anecdotal cases like mine. There have been some large scale studies comparing Asian, European and American cancer rates and also Asian cancer rates vs. Asian-American cancer rates or African vs. African-American rates (in hopes of controlling for genetic variations.) These studies may give some information but there are other variables that may be factors, for example that American cows are fed hormones and antibiotics that we get in meat and milk. Maybe those chemicals play a role? Maybe there are other dietary differences not studied by the researchers that play a role (tea? soy? turmeric? pepper? total calories eaten?), or non-dietary differences (smoking? air pollution? sunlight? temperature? exercise?)
There was a frequently cited study by Dean Ornish who reported a six percent difference in average rates of PSA increase between frequent dairy consumers (like me) and dairy abstainers (consumers had the higher rate), but six percent is a pretty small number. There were also studies by Gerry Potter, one of the inventors of Zytiga, that showed that substances found in organically grown vegetables (lookup "salvestrols" on Google) could retard the growth of cancer - no cure but a slowdown in PSA growth and an increase in age before getting PCa.
For scientifically reviewed info I suggest searching ncbi.nlm.nih.gov/pubmed/ and cancer.gov . I don't trust any of the "Doctor" Joseph Mercola type websites or, worst of all, the Ty Bollinger type YouTube videos. A lot of Bollinger's info is just obviously false and deceptive. There are myriad quacks on the Internet whose real understanding of cancer is non-existent and not a few whose primary expertise is in extracting money from people desperate for help.
Alan
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