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  • 9.22.12

    DAVE (patient/survivor)

    DAVE'S JOURNEY WITH PROSTATE CANCER

    None


    MY JOURNEY WITH CANCER, THE BATTLE OF MY LIFE...

    My cancer started with a small swollen area on my lower left side of my neck. I first went to the doctor in mid February 2009. My primary doctor examined me and just thought it might be a pulled muscle. As I did not have any pain or any other symptoms with this. He did not feel any hard mass or lump.

    To further diagnose my problem he sent me to have a ct scan. When I went back to him to get the results of the ct scan I now was starting to have problems urinating. I brought this to his attention. He then did a digital rectal exam to check my prostate and noticed it was enlarged as well as having a nodule on it.

    My doctor said the results from the ct scan did not show any cancer or tumors, but did advise further testing, a (pet scan). I freaked out! I knew that generally the only people that have pet scans are people with possible signs of cancer. After his exam, he refers me to a urologist and a oncologist. I just love the fact how doctors don't tell you everything! "The ct scan does not show any signs of cancer, but I want you to see an oncologist"... Yeah ok, I'll just go for the fun of it!

    So first I see the urologist. The urologist found the same problems as my primary doctor. After his exam he also found my prostate to be enlarged and with a nodule on it. After explaining to my urologist that my grandpa had prostate cancer I suddenly became a prime canidate. At this point I am starting to put all this together. Everything is pointing to cancer! At this time I can not believe I am even having these conversations with these doctors. What the heck is happening? My urologist also wanted me to get another ct scan of my lower abdominal area as I was experiencing pain in my abdomen and blood work (psa).

    After my second ct scan and blood work I now schedule an appointment with my oncologist. After his examination he wants me to have several x-rays taken of my bones. He also refers me to see a Ear, Nose & Throat doctor due to the swollen area around the neck and throat. After the results of the x-rays my oncologist tells me that I should have metal rods put in both of my femurs. I could fracture them just by walking. At this time still no one really knew for sure what I had. But all indications, it was looking like prostate cancer.

    But still several more tests needed to be performed. My oncologist told me that there is no cure for prostate cancer and that there would not be much that he could do for me...Needless to say, I went searching for another doctor as this was starting to sound very serious and my current doctor did not give me much confidence of my future. Although I still could not grasp what was taking place. It felt as if I was living a very bad nightmare!

    I schedule an appointment with the E.N.T. doctor. After the E.N.T. doctors exam, he suggest a biopsy of my neck. He gave me the choice of needle aspiration or surgery. I choose surgery as he said that is more accurate.

    Then my urologist calls me and said the ct scan of my abdominal area shows I have a large blood clot in my vena cava area and I need to get to the hospital as soon as possible. I got admitted to the hospital for three days. The hospital had to do another ct scan (my third), it to showed I had a clot.

    The doctors put me on blood thinner (lovenox) which you inject in your stomach yourself and sent me home on Monday and I had my neck biopsy on Tuesday. I then go back to my urologist and I'm told the results from my blood work. My psa level is 179 (normal range 0-4) and my urologist wants to do a needle biopsy on my prostate along with other tests...urodynamics, which checks urination problems and cystoscopy, which checks the bladder and urethra by means of using a scope.

    March 24, 2009 was the most horrible day in my life. My life as I currently knew it, was about to change forever. As I went back to see the doctor and my dad and brother waited in the waiting room. I never expected to hear what I was about to hear or even with all the previous talk maybe I was just going into denial. I do remember sitting and waiting for the doctor to walk in the room and I was scared to death! The doctor walked in the room and said, my friend...you have adenocarcinoma.

    I have what? "Adenocarcinoma", He said he believes it has started from the prostate. But generally prostate cancer does not travel as far up as the neck. So they will need to do further testing. I truly believe a part of me died right there in that room! I will not ever be the same person as I once was. I remember he was still talking to me, and all I was thinking of was dieing and my family, my wife and kids... A biopsy of my prostate and blood work as well as a PSA test would further prove it to be prostate cancer. He said the next several weeks that I will be very busy...and I was!

    I never expected to hear cancer...Your just numb for a few minutes. Not knowing how to respond or what you just heard is real. He told me that was the results of my neck biopsy. The doctor removed two lymph nodes, both detected to be cancerous. I then go to my urologist and had twelve biopsy samples taken from my prostate. Ten of those were also found to be cancerous and a gleason score of 9.

    The diagnosis... Advanced Prostate Cancer stage 4 with bone mets. The cancer had spread to my lymph nodes and bones, shoulders, ribs, spine, femurs and pelvis. They started my treatment on March 30, 2009 with lupron shots every four months and flutimide taken daily to lower my testosterone.

    As prostate cancer feeds and grows off of your testosterone. The doctors told me prostate cancer is not curable. With treatment they can possible slow it down or hopefully stop it, but not cure it and with chemo being the last source of treatment.

    This as you can imagine was just devastating. After hearing this I was completly numb. My first thoughts were, am I going to die from this disease? and how could this have gotten so bad and spread so much when I felt so good!

    A month after being diagnosed the oncologist wants me to see a radiation oncologist to see about radiation for my legs. After my first visit with the radiation oncologist, she schedules me for ten treatments of radiation to start the following week. She wanted me to start to have radiation in my right femur which is the worst.

    Radiation would kill the cancer in that area and also help relieve the pain in my thighs. Through out our conversation I was concerned about my bones which radiation will weaken my bones. The radiation oncologist then suggest that I see a orthopedic surgeon before I have radiation.

    At first the orthopedic surgeon suggested putting metal rods (prophylactic nailing) in both of my femurs as a possibility. But first wants me to have MRI's and Xrays. The results of the MRI shows the cancer is attacking the bone marrow not the bone (cortex) at this time. So, the rods could be put on hold for now. With all this confusion...radiation, metal rods in my legs and different opinions from different doctors. It was just to over whelming. It was time to seek a second opinion.

    I was not satisfied with the treatment plan of my local oncologist. So, I now decided to go to Chicago in July 2009 to the Cancer Treatment Centers of America for a second opinon. Since going to CTCA and getting that second opinion. I currently at this time do not need radiation or metal rods. I can't stress enough the importance of a second or even third opinion.

    Going through a devastating illness such as cancer, it certainly is a wake up call. You certainly look at life in a much different way. I don't know what is around the corner for me, as none of us knows what tomorrow will bring. But when I first was told I had cancer I was totally shocked. I immediately went into denial. I was scared. I felt completely alone.

    At times I feel I am still having a bad nightmare and I am waiting for someone to wake me up to tell me everything will be okay. I have a wonderful wife and two great kids that I love very much and want to be with for a very long time. I have learned through this whole ordeal how much people really care. I can't stress enough how important friends and family support is.

    I want to thank my entire family for all you have done and your continued support. I don't know how I could have
    gotten this far without your love, concern, hope, your inspiring strength and all of your prayers to give me the courage, strength and hope I need to fight this battle. Again, I thank you all and I am so blessed to have friends and family like I have.

    I don't call myself a survivor as I don't feel that I have survived anything! As with every new day I am still fighting for my life. If someday that this cancer takes my life...then yes I truly lost and cancer has won! But if someday that I am so truly blessed and this horrible disease is no longer invading my body, then that is when I will become a survivor. Until then I will continue to fight this cancer minute by minute, hour by hour, day by day.

  • 9.21.12

    BETTY V. (family/caregiver)

    WHAT ABOUT THE OTHER VICTIM OF PROSTATE CANCER

    My husband was diagnosed with prostate cancer in April 2011 and in May 2011 his prostate was removed. His cancer was very aggressive (8's), so there was an urgency to get the cancer out before it escaped the prostate. Doctor's were successful and my husband is cancer free today.
    But in May of 2011 both of our lives changed. Changes to his body not only affected him, but me as well.
    His last erection was May 2011, and the last time we had "real sex" was in May 2011. He tried medication, but unfortunately it failed. His doctor's made other recommendations but we agreed not to go that route.
    Please don't misunderstand me, my husband has sexual urges occasionally (a lot less than before) and I make sure he climaxes, but I get nothing in return.
    I tried talking to him about my needs but he either changes the subject or get very angry. His aggression and anger level has increased since the surgery.
    Here lies the problem: Coping with this facet of prostate cancer is not being addressed. The wives/girlfriends have no place to go to get help. I have talked to his doctors and my own doctors and there are no support group specifically for the wives/girlfriends of prostate cancer survivors. (I had one of my doctors actually suggest that I lower my hormone level so I don't have an urge to have sex. Can you believe it?)
    I found several cancer support groups and when I called, none of them deal specifically with the women---the other victim of prostate cancer. They all invited me to join a group, but when I told them that I wanted to discuss what the other wives/girlfriends do about sex now that their men are unable or unwilling to accomodate them sexually, I was told that it wouldn't be appropriate to discuss that topic in these meetings, another suggested I call another cancer support group, and another suggested that I start my own group. If I was an expert and knew what to do about being the "other victim" of prostate cancer believe me I would start a support group.
    As of late, I have found a private counselor for myself, just so I can vent my frustrations. So I can talk to someone and find ways to cope with living with no more "real sex" or any sex for that matter (except with myself), and an angry man.
    If your only response to my journal entry is to suggest a battery operated tool for me or shots and pumps for him, please spare me. This is not a joke. It's real.
    When women get breast, ovarian or cervical cancers, they can still have "real sex" and the lives of their men can go unchanged.
    When men get prostate cancer,it affects both of us and somehow that fact is being overlooked.

  • 9.18.12

    ANDREW (patient/survivor)

    PSA IMPORTANCE

    My regular Physician who is so thorough with tests ran my PSA test a year ago and was at 4.2. Went to Urologist and he said let's wait 6 or so months to see if it is still elevated and then do biopsy. It was still elevated and did biopsy to find it was early stage cancer back in May. Had Davinci Surgery in late July this year and will go back in October to retest for PSA to hopefully be non detectible. Never in a million years was I prepared for what this had done to me more emotionally than physically. It is such a personal matter and it is not describable to others how it truly effects you. It enrages me though to know that we are kept in the dark and that Health Insurance Companies still to this day say " Dr's should not test for PSA until 50". I was 45 when tested and just turned 47, thanks to my Dr who is aggressive and smart she tested. I wonder if I would not have been tested until I was 50 where I would be???

    I am hoping to be an advocate on education and awareness and I wear my Blue Cure T shirt proudly around Washington, DC.

  • 9.04.12

    RICK (family/caregiver)

    2-1/2 WEEKS AGO

    2-1/2 weeks ago, during a routine physical, my bloodwork was taken. A couple of days later, the doctor called. He said all my bloodwork looked good except my PSA was a high, 23. He said we could talk in about two days but I told him I would be down in five minutes. I called my wife, Donna, and told her that I would pick her up and her only comment was "Oh No, I'll be ready.". There was total concern in her voice. When we got to the doctor's office, he was ver straight forward with us and said there was a good chance that prostate cancer was indicated by the test results and recommended a Urologist who saw me two days later. He did another physical examination,and discussed the results. Prostate was normal size but firm. Options were to do another PSA and wait for the results, which he felt would still come up high later, or go straight to a biopsy which he set up and it was conducted at a surgery center two weeks ago. I get results tomorrow. Waiting is so very tough but the results will be what they are. If they aren't positive for cancer, then we have other opportunities but it won't be cancer. Regardless, I can't recommend strongly enough that PSA's are done on a regular basis after a certain age. That test may save a life.

  • 8.29.12

    HOWARD (family/caregiver)

    PREVENTIVE CARE BIAS

    I knew of men that died of prostate cancer in their early 50s. I am at that age now. Many times, as can be seen with this group, early detection can save lives. We must promote that PSA screenings not be deemed useless. The test works. Proper training of doctors on how to proceed with the results is what needs attention. Breast cancer mammograms at 40 were once deemed to be unsupported until enough people spoke out and changed that. We need to do the same. Also, breast and cervical cancer preventive care is now fully covered. However, prostate and testicular screenings will be denied if one can't afford the out-of-pocket costs only because men are the recipients. The gender bias in healthcare must stop. Please sign this petition so all that apply can receive preventive care. Thank you.

    http://www.change.org/petitions/the-president-of-the-united-states-stop-sexism-in-the-affordable-care-act

  • 7.05.12

    MIKE (patient/survivor)

    JOURNEY

    In April of 2010 I updated my medical history with my doctor ( Grandfather,father and uncle had prostate cancer). My doctor did a PSA test and it came elevated twice. After a biopsy on my 48th birthday cancer was confirmed. I had a radical prostatectomy in July 2010. I am two years cancer free and feeling great. My wife and daughter never let get down on myself and were great care providers during my surgery and recovery.

  • 5.29.12

    TIFFANY M (family/caregiver)

    BRIGHT FUTURE

    None

    My husband, William, and I have been married for the past 16 yrs. We have 3 wonderful boys. In December of 2005, my husband had a stroke at the age of 42. Soon after, he was diagnosed with diabetes. Five yrs and one major move later, he became really ill due to uncontrolled diabetes. At least that's what he was told. In February of 2011, William was hospitalized with kidney failure. It was then, that hospital preformed an MRI and informed us about his enlarged prostate. The first urologist said his bladder stopped functioning due to his diabetes, not because his prostate was blocking the urine flow and he was too young to worry about his prostate. Upon second opinion, and 2 tests and a biopsy later, it was confirmed he had prostate cancer. This was July 21, 2011...5 days before his 49th birthday. Thanks to Dr Andrews of the Mayo Clinic here in Phoenix, Az, my husband is 2 months post da Vinci and looks, sounds feels better, and has more energy than he has in 7 yrs. We changed our eating habits when he was diagnosed with diabetes, but now they have changed yet again and thanks to his current job, he gets plenty of exercise 5 days a week. If it hadn't been for a second opinion, who knows if our boys would still have their dad around.

  • 5.29.12

    MIKE (patient/survivor)

    FORWARD !

    None

    I am moving forward. Now almost a full year with good PSA numbers. I continue my regiment of healthy eating and a active lifestyle to combat this disease.

    I encourage more men to try this approach.

    Many prayers still going out for all my fellow survivors.

    Mike Eagle

  • 5.28.12

    COACH MEDINA (family/caregiver)

    BASKETBALL DELIVERS A POWERFUL MESSAGE

    None

    My name is Anthony Medina and I am a former basketball player and recent graduate of the University of St. Thomas in Houston, Tx. Back in February of this year Gabe Canales came to speak to the Men's Basketball team at St. Thomas about the importance of a healthy diet and lifestyle. I had always been very careful about what went into my body, but I never realized how great habits would benefit me the rest of my life.

    After Gabe spoke to us as a team I approached him about the possibilty of forming a boys high school team that would play in spring and summer tournaments. The team would be called BlueCure and the boys would be the first to help and spread the message to the entire basketball community. In the beginning I wanted nothing more than to be a part of something bigger than myself and hope to have an impact on others lives.

    Now BlueCure Basketball has grown into a program that has five teams, each in seperate age divisions. Our 11U(and under), 13U, 14U, 15U, and 17U teams play statewide tournaments and are doing an incredible job of spreading the BlueCure message. June and July will be busy months for all five teams since each will be playing in tournaments at least twice each month.

    There are few things in the world that have no boundries, sports is one of them. All races, religions, and social classes compete in sports together. This athletic community is an incredible audience that we would love to share the BlueCure message with. The hope is that BlueCure Basketball will be the first step in sending that message.

    I am proud to be a member of the BlueCure family and take great pride in spreading the BlueCure message!

  • 5.28.12

    GABE C. (patient/survivor)

    MEMORIAL DAY 2012

    None

    Today is Monday, May 28, 2012, Memorial Day. I sit here in a coffee shop making updates to the soon-to-be launched Blue Cure website reflecting on the many blessings of my life. Though the last two years of my life have been less peak and more valley due to my diagnosis and all the emotional, mental and financial challenges that have come with it, I am still blessed...and I am so thankful for the sacrifice of the men and women who risk their lives for our country, and who have provided me opportunity and allowed me, my friends and family, FREEDOM.

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