Hi, I am new at HealthUnlocked. PSA 29.4 and after biopsy (10 samples - 4 at 30% and 6 at 50%) confirmed cancerous with Gleason score 4+5=9 on May 2015. No sign of metastasis to the bones after complete CT scan of bones. Urologist stage the PCa at 2a (localised). Then he suggested prostectomy and removal of lymph nodes. I did extensive research and in one of the papers that mentioned if your specialist talk about removing your unaffected lymph nodes, you should just 'run'. That's what I did.
After that I decided to go the route of alternative natural supplements and complete diet and lifestyle change program. For 3 years my PSA remained at 23 - 33. Did PSA monitoring every 3 months. Six months ago my PSA started to spike. In May 2018 the PSA was 53.3 and October 22, 2018 it went to 96.4
My family doctor, with experience of PCa patients mentioned that usually PCa would experience bone pain IF there is metastasis. To date I have not had any pain on my whole body. Any Comments, Folks?
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Asianbites
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This is very sad. You listened to the idiots on various internet sites instead of sound medical advice. If you had been treated with surgery or radiation then, you might have been cured. Now, the best you can hope for is to manage the disease.
Find yourself a good medical oncologist. He will order a bone scan/CT to check for distant metastases. Bone pain only occurs later in progression (your family doctor has no idea). Your medical oncologist will put you on hormonal therapy and either Zytiga with prednisone or docetaxel, depending on the results of the bone scan.
Yes, TA I want to thank you for your comments. I am living with the consequences and life threatening, I believed.
Just got the report on my bone scan (9 Jan 2019) The following is the report :
Findings : There has been development of multiple abnormal foci of activity in multilevels of the spine, as well as multiple ribs and involving the pelvis. There is also a small focus of activity along the medial aspect of the left femoral neck.
Impression : Interval development of extensive metastatic disease in the axial skeleton and possible early proximal appendicular skeleton involvement. Radiographic correlation of the left hip recommended.
I have an appointment with a specialist at the BC Cancer Agency on Feb 04, 2019. I am really lost and don't know what I should ask or do. Could you please give me some help with Questions to ask during the meeting with the specialist.
Should I ask for a CT Scan to identify the exact location and size of any tumor that may be present outside the prostate? And what treatment would be more appropriate to discuss with the specialist
What other advice can you give me to discuss with the specialist would be very much appreciated. Thanking you in advance for your valued opinion and help.
Footnote: I have an elder brother also in the same situation in Malaysia. He is currently on Zoladex treatment. His original PSA was 1300 and after 3 treatments the PSA is down to 1.0
Yes, TA I want to thank you for your comments. I am living with the consequences and life threatening, I believed.
Just got the report on my bone scan (9 Jan 2019) The following is the report :
Findings : There has been development of multiple abnormal foci of activity in multilevels of the spine, as well as multiple ribs and involving the pelvis. There is also a small focus of activity along the medial aspect of the left femoral neck.
Impression : Interval development of extensive metastatic disease in the axial skeleton and possible early proximal appendicular skeleton involvement. Radiographic correlation of the left hip recommended.
I have an appointment with a specialist at the BC Cancer Agency on Feb 04, 2019. I am really lost and don't know what I should ask or do. Could you please give me some help with Questions to ask during the meeting with the specialist.
Should I ask for a CT Scan to identify the exact location and size of any tumor that may be present outside the prostate? And what treatment would be more appropriate to discuss with the specialist
What other advice can you give me to discuss with the specialist would be very much appreciated. Thanking you in advance for your valued opinion and help.
Footnote: I have an elder brother also in the same situation in Malaysia. He is currently on Zoladex treatment. His original PSA was 1300 and after 3 treatments the PSA is down to 1.0
With multiple metastases, the MO will probably recommend ADT plus docetaxel. Ask about expected side effects and what you can do to prevent/treat them. Or he may recommend ADT + Zytiga with prednisone - same questions. Some guys do both at once, which may or may not be more effective, but I haven't seen any studies on that. The advantage of chemo first is that after 18 weeks, you can move onto Zytiga; whereas if you do Zytiga first, it may be more than 2 years before you can try chemo. Also, doing chemo earlier has less side effects.
Thank you very much for your feedback. Are Zytiga / docetaxel chemo drugs?
Another point I would like your valued opinion is about 'DIET' when I am on chemo or Zytiga /docetaxel. Any specific foods that I should avoid consuming?
They can't assess your nodes for cancer without removing them (generally). My only concern was whether it could cause edema of my leg(s). I knew that edema can occur after radical mastectomy. My surgeon said it would not.
It's 6 weeks since my RP/pelvic node dissection, and wouldn't you know it, he was right!
My dad neglected his prostate cancer. When he finally got treated, his bone scan lit up like a Christmas tree. He never reported any bone pain.
It is likely Tall Allen is right that you now have advanced disease. But all is not lost; my dad lived many years after his diagnosis (with lung cancer as well) and died of something else. Get yourself into treatment now.
Yes I agreed with Tall_Allen's comments. At 71 years old and without experiencing any bone pain, I thought I am okay, until I joined this site. The information is valuable. I am going back to the professionals to find out my options. Sad to admit there's not much good news upcoming. Thanks to you too for your info.
When your dad started his treatment, was he on chemo?
And could you please let me know what was his daily diet whilst on his treatment.
I am meeting with my specialist on Feb 4th. to discuss options, any help with questions to ask the specialist would be much appreciated. I am totally lost and confused what I should ask the specialist. Thank you very much dentalwin.
No--he was "treatment naive", ie: his first treatment was ADT. By ignoring a probable PC diagnosis years later, he skipped right over all that messy biopsy, surgery and RT stuff. So he only started treatment after symptoms arose. If memory serves, he was put on Casodex and had a Vantas implant. At some point his PSA started going up again and he was put on another repository form of Lupron. My dear ol' dad didn't cook--his diet frankly sucked. He ate stuff like Dinty Moore Chile out of a can. It must have worked.
Ignoring what most people would consider common-sense medical advice doesn't always work out that well, but now that he's gone almost 4 years who am I to say he was wrong? But he was probably about 80 when he was diagnosed--certainly not the choices I would have made.
I am very sorry to hear of your latest diagnosis. I must say that I am unaware of any nutritional or diet supplements that can cure prostate cancer. I know that hindsight is 20-20, but your story is yet another example of the importance of serious research into the disease and treatments for it. Changing your diet can seem like an "easy way out," when looking at life-changing surgery and/or radiation--and potentially chemotherapy. I think if you had stuck to legitimate science-based medical research, you wouldn't have taken a chance on diet therapy. I hope you seriously follow the advice of a legitimate practicing physician specializing in prostate cancer. Best of luck to you.
Thanks Jeff85705. Looking back on the information referred to me about a colon cancer patient who went for surgery and then refused chemo to treat met, he went on diet and supplement therapy. Claimed he cured himself since 2004. He then started to write about his treatment program called 'Square One' . But his was colon cancer with met. Totally different from my prostate cancer. My mistake ! Looking forward to discuss treatment options with my urologist. Thanks for your info.
You can't accept a treatment based on one (or even more) anecdotal report. For one thing, you probably don't have the full story. It's best to keep to reliable websites from well-know and respected sources like Mayo Clinic and other established sources. Curiously, I would like to know if that person treated for colon cancer with mets is still alive and/or still "cured."
Just got the report on my bone scan (9 Jan 2019) The following is the report :
Findings : There has been development of multiple abnormal foci of activity in multilevels of the spine, as well as multiple ribs and involving the pelvis. There is also a small focus of activity along the medial aspect of the left femoral neck.
Impression : Interval development of extensive metastatic disease in the axial skeleton and possible early proximal appendicular skeleton involvement. Radiographic correlation of the left hip recommended.
I have an appointment with a specialist at the BC Cancer Agency on Feb 04, 2019. I am really lost and don't know what I should ask or do. Could you please give me some help with Questions to ask during the meeting with the specialist.
Should I ask for a CT Scan to identify the exact location and size of any tumor that may be present outside the prostate? And what treatment would be more appropriate to discuss with the specialist
What other advice can you give me to discuss with the specialist would be very much appreciated. Thanking you in advance for your valued opinion and help.
Footnote: I have an elder brother also in the same situation in Malaysia. He is currently on Zoladex treatment. His original PSA was 1300 and after 3 treatments the PSA is down to 1.0
If you go for a scan make sure you have plenty of iodine - organic sea kelp is a good source - in fact sea kelp is a good diet supplement everyday - I hope your prostate cancer hasn't spread hopefully your alternative diet and supplements have kept it contained your prostate if it has get your prostae removed
Yes the thing is the radiation they use on you is radioactive iodine now if you are deficient in iodine your body will absorb this harmful radiation because the body can't tell the difference between bad and good iodine - but if you are replete with good iodine your body will not absorb the bad iodine ? So it's important - organic sea kelp is a good choice or lugols iodine
Inositol is very important to stop cancer spreading it is harmless no side effects check it out
Hi Lillyof the valley37. Ok does that mean the x-rays of my pelvic bones 5 days before my last PSA test could have spiked my PSA from 60 to 96.4 ?
I played basketball with some kids on October 14th, and I believed I sprained my pelvic muscle. When I visited my doctor on Oct 16th, he sent me for x-rays (3 positions). Then on Oct 22nd it was my regular (every 3 months) PSA blood sampling test. Thanks for your info.
I don't think an xray would impact on your psa like that ?
In UK radioactive iodine is injected when they scan your bones so it is best to take good iodine before so that your body doesn't absorb the radioactive iodine
as I said before the body can't tell the difference between good and bad iodine that's why people working at nuclear plants are given good iodine
Iodine is only useful for radiation treatment for thyroid cancer. It has no effect on other organs.
Didn't your urologist at least lecture you on the aggressive and dangerous nature of your gleason 9 diagnosis? I don't get that you could leave it untreated.
Thank you folks for the comments and valuable information. I realised what Jeff85705 said about being unaware of nutritional or diet supplements curing prostate cancer. All the information I have refers to other cancers. Nothing specifically on prostate cancer. And in fact most of those cancer patients who claimed to have been cured have either gone through the surgery/radiation/chemo and added the nutrition/diet to 'stay cured'. Tons of websites out there that are misleading. I want all you folks to know I appreciate your comments. Thank you so much.
Your comment: After that I decided to go the route of alternative natural supplements and complete diet and lifestyle change program. I agree. Research these first.
Wow. If I may be blunt, you seem either very brave or very foolish. From your first post, it would seem you have a high risk prostate cancer diagnosis, not a situation where active survielance would be appropriate, regardless of supplements or diet change. Please consult an oncologist or two and reconsider. Several teaching college programs (like Duke or Vanderbuilt in my area) have programs where you meet with several specialists to review your condition.
I was not fully aware of the seriousness, even though my urologist casually said "you have aggressive prostate cancer. Let's go for a FULL CT Scan for any signs of metastasis. And the CT Scan came back totally negative (no metastasis). Urologist said the cancer tumo r was localized. And the rest of my case was mentioned earlier. Now I am living with it one day at a time. And of course getting professional help, trying. Your comments much appreciated.
Yes I know the Gerson protocol. Never tried it though. But is it a general cancer treatment protocol? And does the protocol applies to PCa?
I tried the Bill Henderson protocol. After 3.5 years my PSA started to rise. Now, after joining HU I realize there is no cure for prostate cancer. And since August 2018 the PSA has been doubling every 2 to 3 months. I know my prognosis doesn’t look good and living a day at a time.
(For humour- thinking of going for a good meal of Texas Fried Chicken or Buffalo Bill’s fried chicken wings!)
Of course there is. I've been cured. It depends upon the kind of PC one is diagnosed with. Doctors are right to use the term "no evidence of disease." Patients, like me, are better off considering themselves cured.
My concern is the psychological welfare of patients who I believe are better off thinking of themselves as cured. Newly diagnosed patients are by definition neither cured nor have no evidence of disease.
As I said, doctors can use terms like "no evidence of disease," but patients are not doctors. Patients can avoid anxiety by living in the present moment. As of now, I'm cured. And I feel pretty good about it. You might too if you gave up imaging futures that may or may not ever happen. All you know for certain is what you know as of now. It's the opposite of deception -- it's the only truth available to me.
You certainly know more holistic practitioners than I do - I never claimed to know any -- I know many doctors, lots of patients and a few psychologists. If all you can do is resort to ad hominems, you obviously have nothing to add to the conversation.
There is no room for ad hominems in civil discussion. I am living proof that prostate cancer can be cured. Doctors are there to give us the facts. It is up to each of us to determine what those facts mean for our lives. If you make up fictional stories in your head that your cancer will return someday, perhaps that is adding to the anxiety that is making you stressed out, by your own words. There is a better way: deal with what you know in the present moment. I learned how to do this by practicing mindfulness. There are classes in almost every city these days - you might want to investigate-- perhaps it will help relieve the stress that you feel.
Mindfulness helps one live in the present moment instead of in fantasies one lives in one's head or in past regrets. One has no control over the past or the future, only to the attitude with which one faces the present. I'm not projecting anything -- you wrote, "This’ll be my last communication to you because I need to avoid stress." (about 3 posts ago). Perhaps you need a refresher course.
I started out with RP and then the cancer came back, I then I had radiation and the cancer came back. Both times I thought afterward I was cured; both times these treatments failed. Then the cancer came back again (2nd time). My next step will be to get treatment that may (or may not) cure my cancer. I choose to still believe that I can be cured now or sometime in the future. I have that hope because of my personal attitude backed up with a good deal of knowledge learned here and from the various publications I view frequently. I spent the first 5 years on the edge of my seat every time I received a PSA test result. Literally with heart palpitations opening the result! Then I changed my mindset and got into action learning about the disease and asking questions. I no longer have the anxiety I once had and live each day as that day unfolds. Thanks Allen for all of the great information you provide here that is always backed up with trial and research data. You are much appreciated!
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