Prostate Cancer just Diagnosed - Advanced Prostate...

Advanced Prostate Cancer

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Prostate Cancer just Diagnosed

Blair77 profile image
67 Replies

My 47 year old husband was just diagnosed with prostate cancer. It was found inadvertently when a PET scan revealed enlarged lymph nodes. They biopsies the lymph node and found adenocarcinoma of the prostate origin. We haven't met with an oncologist yet. We are in shock!

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Blair77
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67 Replies
Dr_WHO profile image
Dr_WHO

Sorry for you writing to us. Please know hat you have more people than you know praying for you. Also know, while having cancer sucks, there is still life. Last January I was diagnosed with Stage 4, in the pelvic lymph nodes. Had surgery, radiation and hormonal. Not laying around. Just got back from a scuba trip. Wish I did not have cancer, but it does make me appreciate life more.

If you have not done it yet make sure your husband gets a CT/NRI and bone scan. Determine if it is confined the the pelvic area. Discuss options. Even if it has moved past the prostate surgery may still be an option if it only has moved to the lymph nodes. Make sure you trust your cancer team. Since it is in the lymph nodes it has spread. Again, that is not the end. There is a strong case for your husband to be around for decades with meaning >20 years. But you will need to do research. You will have to consider primary and secondary treatments.

Blair77 profile image
Blair77 in reply toDr_WHO

Thanks for your response. He will be treated at UCSF in San Francisco hopefully this is a good place.

erjlg3 profile image
erjlg3 in reply toBlair77

If you're comfortable with your doctor after discussing what your doctor's treatment plan is....with all of these awesome people in the group...Great....if not....get a 2nd or even 3rd opinion. We've had 2nd, 3rd & 4th opinions. Also.....take care of YOU too. It's can be a long, tiring and exhausting trip. You will need to be well. Good wishes, hugs and prayers. Most sincere.

Blair77 profile image
Blair77 in reply toerjlg3

Thanks! He is an already one time cancer survivor in remission from blood cancer for 4 years and now this.

Ca-Darrell123 profile image
Ca-Darrell123 in reply toBlair77

You have picked an excellent hospital one of the best best in prostrate cancer research I will put you in my prayers.

God bless

in reply toBlair77

I also have Stage IV PCa and am getting treated at UCSF--it is a center of excellence for PCa. I feel I am in good hands, and I think your husband will be too. Have your questions ready before each visit. You can help most by taking careful notes for him, as my wife does for me.

rowboattom profile image
rowboattom in reply toBlair77

UCSF is one of the best treatment places

Dan59 profile image
Dan59 in reply toBlair77

UCSF IN SF is an excellent place, I believe Dr Eric Small is still there he is a great researcher, and recently I heard of some other great Doctors there.

bitittle profile image
bitittle in reply toBlair77

UCSF is a great institution! I just finished Salvage Radiation Treatment with Dr. Roach fall of 2016. A leading institution in PCA treatment.

in reply toBlair77

You will receive great care!

in reply toDr_WHO

Awesome dr who!

erjlg3 profile image
erjlg3

I'm so glad he's a survivor. Not fair at all. Very scary as you already know. There is lots of experience and good people here to guide you.

JohnVonhof profile image
JohnVonhof

The best thing I did when my cancer was diagnosed in 2006 was to read as much as I could on prostate cancer and treatment options. I studied the websites and bookmarked many of them. Learn as much as you can and always be proactive. Write down your questions so when you meet with the doctor's and specialists, you remember them and get the answers. In the end, decisions going forward are yours and you want to be informed. Always remember there is hope. Stay positive and as active as possible.

paulofaus profile image
paulofaus

Welcome to the group nobody wants to be part of. I was 49 at diagnosis (still am 49). It is a massive shock, but the shock wears off and you need to get busy, research, opinions, clean up diet, stay positive (which can be difficult at times) etc. There are lots of interesting and informative posts on this site. You'll find the search function very useful.

Jeff54 profile image
Jeff54 in reply topaulofaus

Very good advice to stay positive!

Attitude67 profile image
Attitude67

UCSF is a very well regarded treatment center for PCa. Peter Carroll MD is a leading urologist who has advanced specialized PCa treatment. He is known for addressing the wide variety of problems facing most cancer patients. Almost everyone there is someone either associated with or someone trained by him. One needs to consider every substance known to induce aptosis, every treatment known to remove diseased tissues, and every means of extending life.

I was diagnosed with aggressive prostate cancer was I was 46 and I am still fighting it at 68. Never quit. Fear is a mind killer. We all die sooner or later but everyone here will try to help you to live as long as you can. Don't panic. Follow the recommendations of your treatment team and read everything that you can about the disease. Come back to forum and ask questions.

All cells are supposed to die. Programmed cell death is called aptosis. Cancer cells are like rebellious teenagers that refuse to do what they are told. Orthomolecular Medicine is the art of identifying substances like lyposomal vitamin c that help your cells to follow their orders. Some substances have the ability to induce aptosis while other orthomoleculars reduce the inflammations caused by cancer. Most of these substances don't cure cancer but they do suppress the aggressiveness of cancerous cells. My first urologist didn't know anything about them. He told me that it was highly unlikely I'd live beyond ten or fifteen years. He was wrong. I introduced him and his treatment team to many substances over the years that suppressed PCa growth. His treatment team now uses many of them. Sooner or later they do not work and so the search continues. If you can get past eighty you should be happy for every day you got. Never give up. Learn to fight and live with it. We may not make it till the time there is a cure but if we get to 90 I think we fought well in a very difficult War.

BigRich profile image
BigRich in reply toAttitude67

Attitude67

"I introduced him and his treatment team to many substances over the years that suppressed PCa growth." Please share with the community, for I for one would like the opportunity to learn more about the subject.

Rich

Attitude67 profile image
Attitude67 in reply toBigRich

After choosing a urologist specializing in Prostate Cancer I suggest you find a wholistic physician or a naturopath to assist you in your search for substances that help you to reduce inflammation and induce aptosis. Search for one who is board certified in family or internal medicine and is a member of ACAM, the American College of Alternative Medicine.

Prior to either surgery, radiation, hifu or any other procedure intended to cure prostate cancer you should be ingesting one or more of the phytoestrogens such as pomegranate juice and your urologist or radiation oncologist should prescribe androgen deprivation therapy to both reduce your doubling time and to assist in shrinking the number of active cancer cells prior to surgery for a better outcome. All surgical procedures have risk and you should be asking your physican questions as to whether nerve sparing is possible in your case.

Before and after surgery you should read "Orthomolecular Medicine for Everyone" by Abram Hoffer, MD, PhD, and Andrew W Saul, PhD in order to understand the most recent advances in Megavitamin Therapeutics for Cancer.

You should google Science Daily on a weekly basis searching for biological sand other substances being researched at this time and follow up by contacting the medical departments where studies are being conducted. Be aware that Killer T Cells are being used both experimentally and as treatment intended to cure at different Tertiary Care Centers and if necessary apply to participate as a research subject in one of their protocols.

If you have a Naturopathic Physician or a Family Practice Physician specialized in Wholistic Health google "Pao Pereira" a tincture derived from trees in the Amazon Rain Forest prepared by "Amazon Herbs" and "Rauwolfa." Both these biological are being used to reduce PSA and induce aptosis. Both are combined in a pharmaceutical being developed and tested in France. Once again, if you are not a Physician or an Allied Health Practitioner yourself then find one to advise and assist you.

streaker profile image
streaker in reply toAttitude67

I just looked up the research on Pao Pereira - very encouraging! I wonder if you have any experience with sanguinarine (bloodroot) which is better-known as a topical treatment ( I used it to treat horse sarcoids with a bloodroot/zinc salve). However it has been used internally for cancer. ncbi.nlm.nih.gov/pmc/articl...

Attitude67 profile image
Attitude67 in reply tostreaker

Bloodroot is a toxic substance used to dissolve warts and it is added to some dental medications used by Endodontists to treat your teeth for infections during a root canal. It is contained within the operating field by dental devices. It is not recommended orally. I don't know what the LD50 (the amount per kilogram of body weight that kills but a poison control center will have it listed)

I recommend you google... enquiry@provital.com.au and explore some of their proven botanicals being used throughout Europe, Australia, and Asia.

bjorner3 profile image
bjorner3 in reply toAttitude67

I am unaware of any such product or use of it during a root canal procedure. There is a history of bloodroot in some toothpastes and mouth rinses both no longer used in those due to the observed toxicity of blood root. I am in the US so perhaps some other countries might have different theories concerning root canal medicaments and natural homopathic philosophies/treatments. I also have been a dentist since 1979, still practicing and doing lots of root canals when needed. Not trying to be argumentative Attitude 67 hopefully informational. thanks!

DAvid

Attitude67 profile image
Attitude67 in reply tobjorner3

Thanks DAvid...

Bloodroot (Sanguinaria canadensis) is a spring-blooming herbaceous perennial found mainly in rich woods throughout the Appalachian Mountain regions and across the Eastern United States. The common name bloodroot and scientific name Sanguinaria denote the blood-red sap found throughout the plant, particularly in the roots. This sap contains the alkaloids that make this plant so valuable.

As far as current uses go I found that Naturopaths do use the substance to treat a number of ailments. An author that gives the topic an in depth review is Ingrid Naiman in her book:

A Botanical Approach to Treatment , Cancer Salves: Ingrid Naiman 2003, 2006, 2014

As far as Dental practioners go it seems that those that use it come from India and the United Kingdom, and are now practicing in the United States. Hotwani, Kavita, Sudhindra Baliga, and Krishna Sharma. "Phytodentistry: use of medicinal plants." Journal of Complementary and Integrative Medicine 11, no. 4 (2014): 233-

Also WebMD reports that a specific toothpaste containing bloodroot and zinc chloride (Viadent Original, Vipont Pharmaceuticals) or using a similar toothpaste containing bloodroot, zinc chloride, and fluoride (Viadent Fluoride toothpaste, Vipont Pharmaceuticals) along with a mouth rinse containing bloodroot and zinc (Viadent Oral Rinse, Vipont Pharmaceuticals) reduces dental plaque. Also, rinsing with bloodroot mouthwash after a professional tooth cleaning seems to slow the regrowth of dental plaque. In addition, using a bloodroot toothpaste (Viadent toothpaste, Viadent Inc.) and rinsing with bloodroot mouthwash (Viadent Oral Rinse, Viadent Inc.) seems to prevent plaque development in teenagers wearing orthodontic devices.

Web MD also reports that the swelling of the gums (gingivitis) is also being treated with bloodroot. (Viadent Oral Rinse, Vipont Pharmaceuticals) reduces gingivitis. Also, rinsing with bloodroot mouthwash (Viadent Oral Rinse) after a professional tooth cleaning seems to slow the development of gingivitis. It was further stated that early research shows that using toothpaste and a mouth rinse containing bloodroot extract and zinc chloride for 2 weeks following usual periodontitis treatment reduces gum swelling and bleeding, but not dental plaque, in people with peridontis.

Personally I think the substance is far to lethal to be so readily available and I would hope that patients seek advice from licensed professionals such as yourself before considering its use for any reason. I came in contact with it only as a result of my continuing interest in any substance that offers the potential to halt or slow PCa progression. One of the reasons I love this forum is that any response or story stimulates me to study a little more than I might have otherwise.

Thanks!

BigRich profile image
BigRich in reply toAttitude67

Attitude67

Thank you for your advice. I will followup on your leads.

Rich

AlanMeyer profile image
AlanMeyer in reply toAttitude67

I recommend caution with orthomolecular medicine. Don't take megadoses of any vitamins or supplements without a lot of research and also checking with your cancer specialists.

Some vitamins can be harmful in large doses and some can be beneficial in themselves but harmful in conjunction with other treatments. For example anti-oxidants (vitamins A, C, D, and E) protect against the kind of cell damage done by radiation. If you're getting radiation therapy, you WANT that cell damage.

Here's a link to an article in the Wikipedia:

en.wikipedia.org/wiki/Ortho...

Alan

Attitude67 profile image
Attitude67 in reply toAlanMeyer

I'm glad you brought this up. If you are a nutritionist, an orthomolecular physician, or a practitioner of wholistic medicine you might portray radiotherapy like a man trying to shoot down a cloud of mosquitoes with a shotgun. If you are a radiologist, a radiation oncologist, or a radiation physicist you might portray yourself as a warrior with a light saber who confidently destroys cells dividing so fast that nobody else could even touch them.

The Europeans have said that they have been unable to decide whether or not vitamins have any detrimental effect on Radiation Treatment at all. What we do know is this. Iodine regulates and protects cells from radiation damage. So if you are taking iodine supplements, as many people do, ask your radiation oncologist what he or she believes you should do prior to initiating therapy.

Several authors In the Journal of Orthomolecular Medicine report that new delivery methods, primarily lyposomal vitamin c, have enabled patients to sustain higher doses of vitamin c without gastrointestinal discomfort. A number of physicians report that a 30,000 mg. dose of vitamin c will inhibit tumor growth, induce aptosis, and assist patients receiving chemotherapy and radiation therapy to be more responsive to those treatments.

Pete68 profile image
Pete68 in reply toAttitude67

Hi Attitude67, thanks for sharing, your post was very informative and helpful to me. Please can you tell me what your PSA was when you were diagnosed at 46? and had the cancer spread to your Lymph nodes and bones? My brother has just had his results and his psa is 479 and it has spread to his hip bones. i am desperately trying to educate myself on how to help him beat this. He is now on a full vegan diet including powerful healing foods like Tumeric root,Broccili,Kale, Flaxseed oil, Hemp seeds,Nuts,Berries,Green Tea and many supplements like Vit C, Vit D and doing regular exercise. The doctors have told him he needs to have Chemotherapy. Please can you tell me what you would suggest is best for him? I have read many stories of people beating stage 4 cancer without surgery or chemo,just by making massive shifts in their diet and lifestyle. please could you share your thoughts.

Kind regards

Pete

Attitude67 profile image
Attitude67 in reply toPete68

Obviously your brother is in desperate need of help. Because of his high PSA and your report that it has metastasized to the bone treatment must be implemented as soon as possible. As he has never been treated before he should respond very well to some combination of ADT and Chemotherapy. Once that treatment is accomplished they may want to do a salvage radiation wash out depending on whether his PSA has been been reduced sufficiently.

Don't despair there are many cases with high PSA at first diagnosis that respond very well to treatment. PSA can be reduced to 0 in some cases. At this point you need to put together a treatment team. He needs to have a Urologist, an Oncologist, and a Radiation Oncologist. You need to seek all of their opinions as to his needs. Follow the one you trust. Dietary changes, Nurition, Vitamin Therapy, and Naturopathic Formalations will be of great assistance after his disease is brought under control. Do not delay or procrastinate.

Pete68 profile image
Pete68 in reply toAttitude67

Hi Attitude67, my brother Anthony has been doing an amazing job,he stopped smoking and drinking and his diet is briliant, he has been juicing raw veg everyday,celery,cucumber,ginger,lemon,broccoli ect. he has been drinking green tea, having turmeric root, chlorella liquid and loads of other amazing foods. and he has been exercising every day. He got his tests back last week and his psa has dropped from 479 to just 88 (im so proud of him).

He hasnt yet had any treatment apart from ADT.

Many thanks for all your advise

Pete

in reply toAttitude67

Inspiring to us new to the party. Thank you for your words. Words can harm if negative or heal when truthful. Giving hope to others as you do is a blessing for you as well as for us. Thank you.

westseraph profile image
westseraph

Do research- then sit down with your husband and talk through options. After I was diagnosed with Stage IV prostate cancer, my husband began coming to as many doctors' appointments as possible. He needs to know I am getting the best treatment we can afford. I want to live and thrive, but my husband often has a clearer mind than I, due to the illness and all the treatment approaches. If I were alone, I'd take notes as best I could, but since I'm not, he takes notes in better handwriting, and he asks questions I forgot to. When you're married to someone you love, you're surviving and making medical decisions for two (at least).

Dayatatime profile image
Dayatatime

When I was diagnosed last February at age 46 I was scared out of my mind. I was told by a local Urologist I had 3 to 5 years to live and possibly 10 with a cold shrug of his shoulders. His next question was do you want a shot of Lupron now and what dose. I had no idea about the disease, dose or the treatment. I was sitting in his office in pure panic asking myself what the hell is happening right now??

I went home and told my family and cried my eyes out explaining the words of the doctor. Once I regained my composure I started reading and researching all I could find. I accepted it, rolled up my sleeves and told myself its time to go to work. My first order of business was getting rid of that doctor.

Your going to have ups and downs. You guys need to keep your chin up and push through. Don't be afraid to question a doctor and if you find something new through your own research let them know. A lot is going on in this field and this site and others are likely to have it. Don't be afraid to travel if you want another opinion. I live in rural upstate New York and ended up at the Mayo Clinic in MN and thank God I did. There are ways to make it happen, its up to you to do it.

Your husband will be offered Chemo and I would recommend he does it. I had disease in both pelvic and abdominal nodes. I did 6 rounds of docetaxel and it did a number on the cancer. I had 42 lymph nodes removed with my prostate and only 1 came back positive. Several of them in the scans were large but it was actually scar tissue left from where the cancer was. It shrunk the cancer on my prostate significantly.

Hormone therapy sucks for anyone but as a younger man it sucks big time. Its a tough treatment but it can keep the disease in check. Exercise and diet is a big player in keeping up with this.

Read the most current information, there is a lot of information out there that is old. Remember not to get hung up on numbers. Keep in mind that we are all different and respond differently to treatment and the disease.

I'm barely a year in to this myself but have learned volumes already. Don't hesitate to drop an email if you have any questions or want to know more about my experience so far.

Ron

BigRich profile image
BigRich in reply toDayatatime

Ron,

What hormone drugs do you take and dosage?

Rich

Dayatatime profile image
Dayatatime in reply toBigRich

Hey Rich,

6 month Lupron injections and daily dose of Casodex (50mg). For what its worth I also exercised through chemo, I ran until it effected me to the point where I couldn't. Walked when I couldn't run anymore. Towards the end of the treatments the chemo really made my legs feel like lead. I would also bring a step stool with me while having actual chemo treatments. I did steps the whole time hoping it would help circulation and make treatments more effective. Really helped with the fatigue I felt during treatments too. Will never know for sure if it helped but obviously didn't hurt. The doctors I have seen all said I responded very well to the chemo.

Ron

BigRich profile image
BigRich in reply toDayatatime

Do you plan on ADT to be continuous or intermitent after 18 or 36 months?

Rich

Dayatatime profile image
Dayatatime in reply toBigRich

Rich,

Staying on the double blockade for possibly 2 years and intermittent has also been mentioned. I'm fresh out of surgery (December) and have not had any postop tests done yet. Radiation has also been suggested because I did have a positive margin. The numbers will dictate the treatment.

Ron

BigRich profile image
BigRich in reply toDayatatime

Ron, What do you and your doctors feel about triple blockage with adding Advodart?

Rich

Dayatatime profile image
Dayatatime in reply toBigRich

Advodart has not been mentioned by my team and from what I have read its mixed reviews with nothing really proven about it. I have done well with Lupron and Casodex holding PSA at 0.51 preoperative. ADT has enough damaging side effects with single or double blockade and why add to that if not needed.

BigRich profile image
BigRich in reply toDayatatime

Ron,

Are you on a plant based diet or do you include animal protein; if so, what and how much in oz. per day?

Rich

Dayatatime profile image
Dayatatime in reply toBigRich

Rich,

I just eat healthy, no particular diet. I eliminated dairy, meat and processed sugars. I do eat chicken a few times a week and fish. I try to stay away from high carb foods. I don't measure anything, just eat until I'm full. Veggies and fruit every day. Not as extreme as some guys go but pretty much a 360 turn around from my old habits. I have undergone a lot of treatment this past year and want to give myself every chance I can. With the treatments beating it down I don't want to give the stuff any extra energy. Attacking while I have the upper hand and keeping myself strong.

Ron

BigRich profile image
BigRich in reply toDayatatime

Ron, below is what I responded to Neal regarding my food and drink intake:

One of the pleasures in life is eating and drinking. I drink nonalcoholic beer, one bottle a day. I don't eat red meat, and I limit my chicken to 6 oz. a couple days a week, and my fish to twice a week, 6 oz. I eat a lot of veggies, and some fruit. By design, I lost 100lbs. and I have 25 lbs. I need to lose. I avoid surgar; I drink spring water, carbonated water, and coffee, black.

Rich

I too had lymph node involvement when I was Dx seven years ago. I only needed a second opinion to find out that surgery was not an option. Something to do with a horse being out of the barn already. So, I had radiation and ADT, or Androgen Deprivation Therapy, you'll learn more about this therapy as time goes on. Some men do have surgery to remove the prostate, and surrounding lymph nodes, I can't say why it wasn't offered to me.

What you'll need to do right now, is relax and count to ten. It's not the end of anything, it's the beginning of a new journey no one wants to be on. Those of us with PCa that has advanced out of the prostate at Dx are a little behind the ball, but it is treatable. Unfortunately, it's not curable. What we do is hold it at bay, any way possible.

You found a group of men and women who actually care for each other here. Welcome.

Joe

bjorner3 profile image
bjorner3 in reply to

Thanks Joe your words are encouraging. My urologist told me basically the same thing - "your PCa is not curable but we will control it." Well into the journey, RP done this last October, on casodex getting Lupron soon and waiting for the adjuvant radiation treatments. Sometimes wondering the proverbial "why me" other times buoyed by friends and strangers offering kind support and prayers. I have found those with Pca very willing to share experiences and offering advice, knowledge and prayers. Concerns are for the future of course (have not found that crystal ball yet!) along lines of work, what next and definitely how this impacts my sons (19,17 and 15). Have discovered too many friends and patients of mine (am a dentist) that have gone down this path but all have been more than willing to share experience and encourage. Thanks and prayers to all!

David

in reply tobjorner3

Are you Blair77 also. A bit confused here.

bjorner3 profile image
bjorner3 in reply to

No I am not Blair 77. I am bjorner3. I am David Joe. Hope that clarifies for you!

in reply tobjorner3

OK, David, I got a bit confused. I can relate with your concern about your sons. I was St. 4 at 50, I'm now 57. My only son is 33, and hasn't had a PSA test yet. I think he's foolish, but I can't make him get it.

I've been on Lupron from the get go, and I had most all the side effects. I was able to work the first few years with no problem. Then it came hard and fast, over a few month period I just lost all gumption a had. You should do better, in that being a dentist, the loss of T shouldn't affect your work so much. But it will affect you as a man. Read up, be prepared, and stay strong. A sense of humor helped me, a lot.

Peace, Joe

bjorner3 profile image
bjorner3 in reply to

YEAH ALREADY FIGURING THAT LOSS OF T JOE. I AGREE IT HELPS TO HAVE A SENSE OF HUMOR THOUGH THOSE "DARK" MOMENTS SNEAK IN THERE DURING QUIET TIMES. I AM 65 BEEN DIVORCED FOR 7 YEARS AND THOUGHTS ALWAYS ABOUT DATING -LIKE I MOST CERTAINLY WONT BE FUNCTIONAL ANY LONGER AND THAT COULD BE A LIMITING FACTOR FOR SOME WOMEN. BUT.... LIVING BEATS THE HELL OUT OF DYING!!!

KINDEST REGARDS JOE!

DAVID

streaker profile image
streaker in reply tobjorner3

My boyfriend is 65 years old, and was diagnosed with PCa in 2009. Gleason 8, metastatic. Surgery, radiation and Lupron. We met 18 months ago, and have been inseparable since. As far as function goes, there are many ways to "function." You just need to find the right partner, and I'll bet she is out there. Many women look for the heart first!

erjlg3 profile image
erjlg3 in reply tostreaker

Yep....the heart :)

bjorner3 profile image
bjorner3 in reply toerjlg3

thank you both for the encouragement and a feminine point of view!

Cancer09 profile image
Cancer09

Make decisions together ..take a notebook .write it down .ask questions .go away for an overnight together and remember everyday is a gift

Pennysue1 profile image
Pennysue1

Hold on - you've got a long way to go - my husband found out in 2012 that he has prostate cancer - we were both shocked too - dr immediately started him on Lupron shots - don't ever get off the Lupron- Mike's went into remission- wasn't taking any Lupron for 18 months - them it came back in his lymph nodes- took more radiation - back on lupron - tried chemo- didn't work for Mike - dr put him on Zytiga for 4 months - didn't work - he's starting Provenge Immunetherapy soon - both of you just brace yourself - just because these treatments didn't work for Mike doesn't mean it won't work for your husband - I'm praying they do. I'm on here for my husband - helps to know other people are going thru this horribly disease too - praying for your husband

Blair77 profile image
Blair77 in reply toPennysue1

Thanks so much ❤️ We will pray for you guys as well.

Blair77 profile image
Blair77 in reply toPennysue1

My husbands name is Mike too ❤️

Magnus1964 profile image
Magnus1964

I was diagnosed at age 46 also, I am now 71 so don't panic. I am so thankful for having my loving wife as my medical advocate. She is always there asking the doctors the right questions and finding new information on the Internet. It looks like your going to be a great advocate for your husband.

Blair77 profile image
Blair77 in reply toMagnus1964

Thanks ❤️

It's just the beginning, buckle up and get ready for a long, long ride. Best thing NOT to do is Google all the life expectancy charts. They are useless for the average man simply because they throw everyone into the same vegetable soup pot and spit out a number without factoring in an individuals general all around health. Do you have high blood pressure, diabetes? Are you highly obese and spend 16 hours a day watching tv while eating cholesterol rich foods? Is your idea of exercise popping the lid on a can of beer? If all the above applies to you then you may have a problem. If not, Laugh off all the life expectancy charts, I know you looked, we all did.

It's all about diet and exercise with a dash of medicine that those wackos in the white jackets pump in you. In other words, start planning your 2026 vacation to the amazon basin. Enjoy your your life, your not going anywhere for a long, long time. Welcome to the club, this blog is filled with people that know more about prostate cancer than most oncologists. Let me put it this way, anyone can research, including you. The difference is your researching prostate cancer, not twenty different cancers like half the dim witted oncologists out there. I caught one reading a flow chart. It was "bye you freaking idiot".

Get ready ,get set, go! lifestyle change here you come. Put your ear buds on and go for a long walk everyday. Make vegetables your best friend. most of all, enjoy life, stress is a mo fo, deep six it.

BTW, I should be near death according to the charts, problem is they can't seem to find my cancer anywhere. I guess it lost all it's friends and it's hiding somewhere pouting.

BigRich profile image
BigRich

Have hope, I was disgnosed 1n 1998, and I not cured and I still enjoy life. However, your husband may have the opportunity to be cured. Be positive.

Rich

It certainly is a shock. I was diagnosed about 6 months ago. If you are having trouble sleeping tell your doctor and he can provide a sedative or sleep medication if over the counter stuff doesn't help. The shock wears off and, as others have stated, taking an active role educating yourself will banish that helpless feeling. Stay strong. You found a good place for support.

JoelT profile image
JoelT

Hi again Blair,

I went through all of your posts and the many excellent comments. What is missing from the conversation are his numbers. What was his Gleason score, was there a second opinion and what was the Gleason score on the second pathology opinion?

Did any scans show anything outside the gland, if yes what and how much? How many biopsy cores were positive and how much cancer was in each positive core. What is his PSA at and do you have any PSA history?

These are all important questions.

Joel

Blair77 profile image
Blair77 in reply toJoelT

He was being treated for multiple myeloma and they picked up abnormally sized lymph nodes. They thought the lymph nodes contained plasma cells from the multiple myeloma and that he was relapsing out of a 4 year remission. The lymph node biopsy came back "adenocarcinoma of the prostate origin. " We don't know anything beyond that we got the call Friday afternoon at 2:30. He's never even had a PSA test done before. We meet with the UCSF urology/oncology team this week.

in reply toBlair77

Has he ever had a DRE (digital rectal exam)?

MrJack profile image
MrJack

Yes it is a shock, sorry to hear that, this is a good website , lots of good information here

I hope you have good doctors, you will need a biopsy, find out your Gleason score

educate your self because you will have lots of decisions to make.

it is a long road, most of us here have been battling this disease for years.

hang in there and stay strong.

PeterArtiste profile image
PeterArtiste

Sorry to hear the news of your husbands' recent diagnosis. I don't have much to say at this point except to share that I was 44 when I started this battle. I am now 61. You will get lots of information on your first visit. Good luck, stay strong, get angry and prepare yourself as best you can. Be gentle and loving, don't go to bed angry. God Bless.

Pennysue1 profile image
Pennysue1

It's good you're going to an oncologist- my husband is on Provenge - some ins co approve it - he's had radiation twice - chemo twice - always on the Lupron it lowers the tessterone - taken zytiga - - -husband was diagnosed in 2012 - stage 4 in his lymph nodes now- keep fighting -we will all pray for you - don't ever give up - read as much as you can about the disease so you can also be an advocate for you and your husband

Eat_yay_greens profile image
Eat_yay_greens

I am from Australia & my name is Ross..I am new to these forum sites if that is what it is called!! Anyway I would like to add my 2 bobs worth ...over 5 years ago (2011)I had a PSA of 6.4 , way up from a test 2 years earlier , had biopsy came back at 5+4=9 .. I waited a couple of months before doing anything checked on Dr Google a lot & decided to go with my urologist/ surgeon surgested an R/P. I recovered from that without much problem.. the Dr thought he had got it all , from memory it had clear margins, after 12 months the PSA was down to 0.06 , then after another 8 months it started to climb 0.54, so I was started HT Andracur , this brought it back down to 0.03, that worked for 12 mths. & I got sick of the side affects so knocked it off. The next 4 mths. later showed it had gone to 0.98 so I went back on Andracur , it came back a little (0.83) then climbed to 5.47 then 2 weeks later to 8.73.. at this stage I went back to my urologist & he said it was obvious the hormone was making the cancer grow😡..(What next) so then I went on lucrin, was on that for almost 12 mths till April 2016 & my PSA was down to 1.04 , then in Oct. 2016 when my next test was done it had jumped to 32.8.. I had bone scans & CT scans done & all came back clear, I also went on Casodex so 6 weeks later when I got the scan tests results which was 13/12/16 , my urologist tells me everything is clear but my PSA had gone up to 88.8 ☹️. So stopped the the Casodex..as wasn't doing anything..

Well what was the next move!!! A fairly new test called the PSMA-PET scan could be done which is specific for PRostate.. I believe it has been mentioned a few times on this site.. I got that done mid Jan.17 got my results & was a bit concerned.. I have numerous small PSMA avid lesions throughout my body from skull to my pelvis & also large nodes throughout my pelvis & abdomen....

I asked my urologist what do I do now & he said there is no more hormone therapy left to try much to my surprise, so suggested oncology.. I said no thanks.. I have a Intergrative Medical clinic I want to try. This was 750 kilometres away, so we got organised & in the meantime I got another PSA done, now it had gone to 162.. that has gone up 16,000% in 8 months!! This is frightening.. I just didn't want to do chemo. as I believe a lot of people die from these treatments & not the cancer.. it seems that the cancer hadn't taken root like seeds , in the system or else it would have been in the bone scans..so that was about the best thing in the whole scenario..

The treatment I had at this clinic was Hyperbaric Oxygen Therapy, Hyperthermia, Mega dose of IV Vit c + Mg,+ bicarbonate of soda + B Vit. also selenium & iron + other things.. I'm also on special enzymes & a few other things. Also a ketogenic diet.. this needs to be very strict. No Dairy, very low carbs, mainly raw verges, fruit but not much& very little red meat, 2 serves a month...

The oxygen therapy is u are in a pressured chamber 2 times atmospheric pressure & u a breathing 100% pure oxygen through a mask, this is for 2 hrs a day 6 days a week.. the hyperthermia is where you are in at the with just your head out & it is heated up till your body gets to 38.5 min & then u get wrapped up & the body goes to 39+ , this for at least 2 1/2 hrs that is 3 days a week.. it is very exhausting especially the heat part.. I have only just finished all that 12 days ago, I had 9 sessions of hyperthermia & 37 hours in the oxygen chamber..

I now have to wait another 4-5 weeks for my next PSA test so am a bit anxious.. I believe it will work, they have good results even with brain tumours.. there is one thing when you get a diagnosis of cancer , it is you who has to make the decision, don't give in to the Oncologist etc & think there is no other way. I have read that people have been cured by using the computer... in other words searching what else is out there.. Google TTAC.. I found some very helpful info. Sorry this has gone on for too long.. every one keep positive , cancer is not the end, it's only what we make it..there is so much help on the net now I'm sure it wasn't there 6 years ago..

Kind greetings to all of you especially those who have just got the diagnosis..

Ross

You will become informed and in tune with your full diagnosis probably very soon. At that point you'll need to make decisions that nobody except those forced to need to make .You make the choice to live and extend your life although you may be greatly diminished. This is not an immediate death sentence but no matter how bad the stats are don't hinge your thoughts on that. There is a lot that you can do for yourself. God willing you will be around for a long enjoyable life..The no testosterone negative Psa that we need to keep APC away as long as possible ,that's what the battle willbe Hormonal depravation will change a man in many ways stripping him of male prowess. love and a grateful attitude can help. your spirituality and resolve will be tested. This is my take on APC as a patient under treatment for 21/2 years It's a battle that you will fight for life You can have success it's possible. I've had no signs for the past yr but I'm feeling thegreat side effects of the ADT and RT.

Bebby1 profile image
Bebby1

So young

I’m so sorry

The news is shattering

Felt a bit surreal for us

PSA done routinely 17 months prior

All good ... life was nice

All good.... to stage 4

Extensive bone Mets and lymph nodes through to saliva glands 17 months later

Life is very different

Time seems so urgent

Treatments

Tests

Results

Tears

Hope

Look after each other

Be proactive

Read

Listen

All the best

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