Husband's cancer is aggressive and needs quick treatment

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mariateresa
Regular Member


Date Joined Jun 2007
Total Posts : 95
   Posted 8/22/2007 6:49 PM (GMT -7)   
I am sitting here shaking and crying and terrified because I just read an email which was a reply to the online urology consult I requested on behalf of my husband. The urology consult states that his biopsy reports suggest that he has aggressive cancer and that the cancer should be treated definitively and fairly quickly.

I am sick to my stomach! I'm mad at the original urologist for taking weeks to schedule the biopsy, then taking another three weeks to review the results, then another week to do the CT scans, etc., then another week to go over the results, and now the original urologist was supposed to call two days ago about scheduling robotic surgery and he told my husband that he wasn't at risk if he waited. I am so mad and then I'm mad at myself for not pushing, pushing, and pushing! I can't stand it, I want it all taken out now!

My husband is handling all this much better than I am. His attitude is if it's meant to be, it's meant to be. And I'm sitting here sobbing and bawling my eyes out! I don't know what I would do if I lost him.

Maria Teresa

PS - I wanted to tell you folks that the other day, a dermatologist office refused to give me a copy of my biopsy report. I'm debating whether or not to file a HIPAA violation.
Husband Age 55 Maria Teresa age 44

Total PSA 8 on 05/21/07

DRE: prostate bumpy

Biopsy on 07/16/07: 5 out of 8 cores positive, Gleason Score 8 (3+4+5)**
A. Infiltrating, poorly differentiated adenocarcinoma, Glesason Score 8 (3+4+5). The tumor involves approx 70% of the submitted tissue.
No perineural or capsular invasion is identified.

B. Infiltrating, poorly differentiated adenocarcinoam, Gleason Score 8 (3+4+5). The tumor involves approx 50-55% of the submitted tissue.
Perineural invasion identified. Capsular invasion is not seen.

C. Infiltrating, poorly differentiated adenocarcinoam, Gleason Score 8 (3+4+5). The tumor involves approx 70% of the submitted tissue.
No perineural or capsular invasion is identified.

D. Infiltrating, poorly differentiated adenocarcinoam, Gleason Score 8 (3+4+5). The tumor involves approx 60% of the submitted tissue.
No perineural or capsular invasion is identified.

E. Infiltrating, poorly differentiated adenocarcinoam, Gleason Score 8 (3+4+5). The tumor involves approx 20% of the submitted tissue.
No perineural or capsular invasion is identified.

CT of the abd/pelvis; Bone Scan; Xrays done on 08/13/07: Normal


**"Report to the Nation on Prostate Cancer" published by the Prostate Cancer Foundation, page 11: "In some cases, the pathologist might identify a third pattern, which is less common but that has a higher grade than either of the first two patterns that comprised the Gleason score. The presence of this third pattern might indicate that the tumor is more aggressive than the Gleason score would otherwise imply. For example, if a Gleason 4+3 tumor also has some grade 5 cells, the cancer would be considered as being of higher grade disease overall."

Post Edited (mariateresa) : 8/28/2007 7:30:09 AM (GMT-6)


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 8/22/2007 7:08 PM (GMT -7)   
Dear Maria Teresa,

Yes, the waiting is the hardest part of this journey. And your tears of frustration are not wasted on those of us who have been through this. We are all with you. Your willingness to vent your feelings here will make things a little easier now and make you stronger for the fight. Please believe that we will stay with you and hold on to you. You are not alone...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 7/18/07 0.00. 
T level on 4/2/07 - 48     On 7/16/07 - 613
Started .10 ml Tri-Mix on 8/7/07.  It works!!!
Next PSA and T tests on 10/17/07
 
"Patience is essential, attitude is everything."
 


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 8/22/2007 7:16 PM (GMT -7)   
Maria Teresa -

I have aggressive, metastasized prostate cancer and have been going thru this for 2 1/2 years, so I know a little bit about it. I absolutely disagree with your husband's attitude, but, on the other hand, making yourself crazy over this won't help anything. You have to keep your wits about you to be able to help your husband. Berating yourself for what you did or didn't do in the past won't help anything.

A few weeks is not going to make a difference. But, as you've learned, you have to take control of the situation - nobody cares as much about your husband's condition as you (and as he should).

Your argument at the dermatologist's office was was the right thing to do. If you do want to pursue it, contact your state medical board.

Calm down, think rationally and take control of the situation. The situation is not as dire as you think.

-Gordy

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/22/2007 7:19 PM (GMT -7)   

Dear Maria Teresa,

I'm so sorry the way things are going.  It is so frustrating and frightening to wait and wait for results.  I just hope you can feel us reaching out to you for comfort and support.

I'm remaining hopeful that the doctors are moving at a pace that will help your husband.  There is so much that can still be done during and after the surgery.

Looking at Rod's pathology, combined with the doctor's desire to try surgery, the doctor must believe that with just a slight Perineural invasion in one area that he can still get all the cancer.  The doctor may follow up with hormone or other therapies just to make sure he's given Rod all he needs for the fight.

This battle is just beginning and I know you two are fighters, up to the task.  Keep vigilant and asking great questions as you are doing.  The cancer does not know what it is up against!  We'll be here listening and supporting.

May God bless and comfort you and your husband.

Sincerely,

Idaho

 


Age: 54
PSA: 4.3
Biopsy: T1c, 3+3=6, 2 pos. samples in one side of prostate
Da Vinci 31 Jul 2007: saved nerve bundle on side of non-cancerous side
Final pathology: Confined to prostate, T2a, 3+3=6
Working to get back into good shape
Waiting to take that first post-op PSA

AEG
Regular Member


Date Joined Nov 2005
Total Posts : 154
   Posted 8/22/2007 7:34 PM (GMT -7)   
Mariateresa sweetheart, I totally know what you're going through. Take a deep breath (or as many as you need) and please try to calm yourself down. I understand, the unknown is very challenging. I know the feeling of just wanting to get "it" out of his body. You'll call the doctor's office tomorrow and schedule the appointment. Staying calm will help you stay focused and be proactive and that's were you need to be right now. I know how hard this is but you will get through this.

Big hugs to you.

A.

puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 8/22/2007 7:49 PM (GMT -7)   
Mariateresa, my heart, thoughts and prayers are with you. I can't offer much more than to tell you that we are here for you each hour, each day -- whatever you need. When I can frustrated and panicky, the only thing that seems to calm me down is to make a list or a game plan on what I need to do - make phone calls, set appointments, do some more research, list the things I know and those I don't and need to work on. Sometimes I end up throwing the list away, but just going through the motions seems to help. For me, the best way to tackle something this serious is to take charge! Make those calls and get the appointments! Don't wait for the dr to "call back." If you don't hear from him, call him again. Be a pest! From your posts, I know that you are a strong lady. You are there for Rod, and we are here for you. You guys can win this fight! God bless!!
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07


anniea
Regular Member


Date Joined May 2007
Total Posts : 234
   Posted 8/22/2007 8:51 PM (GMT -7)   

Hi Mariateresa

Take a deep breath and try to calm down. Keep in mind yesterday is gone and all we have is tommorro, what ever you didn't grt to yesterday or today cannot be helped but focus on what you will do tommorro. I am glad you have joined this group of amazing people who are willing to help in any way possible. As you can see by my signature line I too have an aggressive PC but I am almost 5 months post op and have a PSA of 0.03. The Doc says it can stay that way for many years or it could change anytime. I choose to live life to the fullest and enjoy my time what ever is left. Try not to beat up on yourself for things that are not under your control.

God Bless you and your hubby, you are in our thoughts and prayers

Rick


Rick & Diana
6-30-06  PSA 2.54
1-22-07  PSA 4.98
1-26-07  PSA 5.09
Diag: 2-14-07 Gleason 8 Stage T1c PSA 5.09
Bone Scan 3-1-07 Clear
Radical retropubic surgery 4-2-07  Post surgery Gleason 9 Stage T3a Positive margins
4-29-07 PSA 0.02
6-9-07   PSA 0.02
7-6-07   PSA 0.03
8-1-07   CT Scan & Chest X-Ray   Clean
 


David123
New Member


Date Joined Aug 2007
Total Posts : 9
   Posted 8/22/2007 9:18 PM (GMT -7)   
Mariateresa:

You are going through what I went through. Your husbands biopsy was only slightly worse than mine and I'm still in remission. The weeks or month or two didn't really matter. You can beat this, but you have to be strong. I did. Schedule the surgery, have him take the HT if he is told, and take things one step at a time.

Many of us have already gone through this, so you should listen to what we say. We are here for you and will guide you through this difficult time in your life. There are many things you can do to stop this disease, and life is too wonderful to be scared and fearful. Hang in there, and things will get better.

maldugs
Veteran Member


Date Joined Jun 2007
Total Posts : 782
   Posted 8/22/2007 10:20 PM (GMT -7)   

Maria Teresa, my wife and I wish you all the very best, we have been on your journey, and now out from surgery 25 days, try and be positive, it is not easy, but insist that the doctors do what YOU want, keep pushing, the day I was diagnosed, my Urologist said that I could take a couple of weeks to make my mind up, but I said I wanted the thing out asap, and asked him to schedule the op next week if possible, it was done 13 days later.

Have faith, be strong.

 

Regards Mal.

 


age 66 PSA 5.8 DRE slightly firm Rt
Biopsy 2nd July 07 5 out of 12 positive
Gleason 3+4=7  right side tumour adenocarcinoma stage T2a
RP on 30th July,
Post op Pathology, tumour stage T3a 4+3=7, microcsopic evidence of capsular penetration, seminal vessels, bladder neck, free of tumour, lymph nodes clear, no evidence of metastatic malignancy, tumour does not extend to the apical margins.


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 8/23/2007 5:52 AM (GMT -7)   
MariaTeresa - it's going to get better. First, I hope that you read every word in every post here. Then, go back and read them again. Look at all these great men who have been - and are going through - the exact same experience. Think how wonderful it is to have all of them here rooting for you and your husband, and providing a unified voice of calm. How that warms my own heart!

Of course, I admire my own husband who was indeed such a trooper - and a hero in my book. It never should be "whatever." It must be stand up and fight. There's too much joy in life.

In this process, we all fall apart briefly and the pick ourselves up and carry on. You're experiencing normal emotions. You'll become stronger with everyone here to help you through this. And believe that the outcome will be positive - as it will be.
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/06, 4/07 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now - Next one: 10/16/07
 


THE JUDGE
New Member


Date Joined Aug 2007
Total Posts : 2
   Posted 8/30/2007 4:13 PM (GMT -7)   
MariaTeresa,
 
Calm down, I promise you it will be all right. First, do Not let you husband have surgery.  Second, get a book called "You can beat Prostate Cancer", by Robert Marckini.  You can find it on line at protonbob.com. Third, Call Loma Linda University Medical Center at 1-800-protons and ask for their information about prostate cancer treatment.  Loma Linda Medical is a major teaching hospital in southern California that has been treating prostate cancer since 1992 with proton beam radiation.  Their over all cure rate is slightly better than surgery, but their incidents of side effects is much better.  Trust me, urologest either do not know about proton beam, or they are just trying to line their own pockets.  By the way there are now five proton treatment centers in the US, with more on the way.
I had a 4+4=8 gleason, 6.81 PSA. four out of the 12 cores from my biopsy were positive for cancer, The tumor involves 92 and 86 percent. And there was perineural invasion.  I am now in my third week of radiation at Loma Linda and it is already been a positive life changing experence. The treatment is painless and bloodless.  The long term documented cure rate beats surgery, the incidents of incontinence and impotence is in the single digits.  Why would anybody ever have surgery for prostate cancer? 
THE JUDGE
  

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 8/30/2007 5:09 PM (GMT -7)   
Hi Judge,
I hope your treatments are successful. The painless and bloodless part are directly conflicted by my friend who went to LL and did have blood in his urine and seman. He also had a burning sensation during urination. This has all subsided and he is doing well four months after treatment, but so am I (surgery 6.5 months ago). And I know my condition and he doesn't. Not sure where you're reading the "cure" rates. I have read many oncological studies that disagree with that when it pertains to high risk patients. If fact, When given a high Gleason and PSA, the odds of metastatic disease is real. Any form of radiation will likely not work alone. You might ask what is the chance you have stage III or stage IV disease? My PSA was much higher but my Gleason was slightly lower. I have advanced disease that any RT would not cure on it's own. I had to go with surgery for peace of mind and a better chance of cure. In fifteen year studies there is no evidence that RT will help me. That came from two radiologists including one from your shop. Years five through 11 show marked improvement as long as I had the surgery followed by HT then WPRT.

Tony
Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
STAY POSITIVE!


shelbys
New Member


Date Joined Sep 2007
Total Posts : 1
   Posted 9/21/2007 8:16 AM (GMT -7)   
I feel the same as you. I'm 44 my husband is 55. My husband had to rescheldule his appointment and they couldn't fit him in for 2 months. We thought if it was important and he had cancer they would have made room for him earlier. When we did get in 2 months later the doc walks in the room asks how we are, I said you tell me, his reply was I haven't looked at your results yet let me see ..oh you have cancer take this book home read it and come back in 2 weeks. How cold!! I just wanted it out! My husbands attitude was and is what will be will be. We decided on the seeds and are waiting on the out come. My thoughts are with you.

Michael's Wife
Regular Member


Date Joined Aug 2007
Total Posts : 150
   Posted 9/21/2007 9:00 AM (GMT -7)   
Welcome, Shelbys. It's tough to be patient but dealing with this disease requires a lot of it. At first my husband felt the same way re: just wanting it out. Then he realized that he really needed to take the time to educate himself on treatment options, etc. His doctor called us with the biopsy results right before he headed out for a 2 week vacation. At first it frustrated us, but then we understood that the best use of our time would be to make ourselves smarter about all aspects of prostate cancer. Right now we're still waiting for him to be scheduled for brachytherapy.

Good luck to both of you for a successful outcome. Hopefully all the toughest parts are behind you at this point.

Husband Age: 58
Stage: T1c
Gleason: 6 (3+3)
PSA: 4.4
Biopsy: 12 samples, Adenocarcinoma involving 3 cores, right side only (95%, 90%, 30%, discontinuously)
Brachytherapy being scheduled


same_as_u
Regular Member


Date Joined Mar 2007
Total Posts : 76
   Posted 9/21/2007 10:23 AM (GMT -7)   
Maria Teresa

Tony is offering sound advice. The ten year study that I read also says that Proton theropy is not effective with an aggressive Gleason score.

Three different oncology physicians also told me that seeds alone are not effective with a Gleason score of 4+4.

Walt
Walt
 
Born 1940 - 67 yo
PSA 6.9 March '07 to 5.1 July '07
Biopsy 6/5/07
Gleason 4+4


gtmriviera
Regular Member


Date Joined May 2007
Total Posts : 338
   Posted 9/21/2007 5:00 PM (GMT -7)   
In 1985 I was told that I had a problem with a heart valve and I was extremely upset.  It turns out that half the people that I know have the same problem and I've only heard of one person who died because of it.  PC is very serious and I hope that none of us will tell you that it is "only" prostate cancer because, unlike mitral valves, PC should be addressed ASAP.  Keep in mind though that it doesn't change over a few weeks so a little delay won't be a life or death difference.  Having offered words of wisdom, let me say this-I doubt if any of us are MD's.  I'm not although I work in a related area.  I knew next to nothing about PC until I was diagnosed and still probably know less than most of the people posting.  I can tell you that you will read that drinking some juice will cure PC, or electrical treatments, or becoming vegetarian, or going to China for stem cell injections and a lot of other things.  Any or all of the above may be helpful and certainly all of the options that your doctor offers have their success stories, but I suggest that you read the forum, check out websites that offer detailed explanations of the treatments (and associated vocabulary) and make an educated decision keeping in mind age, overall physical condition, present stage of advancement, job plans, etc etc.  You can't change the past, but you're the head coach now and you have a team that is going to depend on you to call the plays.  If it gets tough there is an excellent forum hereabouts for anxiety.  Drop in anytime.  The fishing is usually good with only a very occasional crab bite.   

lifeline
Regular Member


Date Joined Aug 2007
Total Posts : 67
   Posted 9/24/2007 1:01 PM (GMT -7)   
Hi Maria:  my husband was diagnosed last may 06 with advanced metastisized pc and yes it extremely maddening when doctors take what seems forever to schedule tests, get results and especially how they deliver the news. than there is also the difference of opinion between the specialists leaving people wondering (are these guys on the same page). while our family doctor took forever to schedule the tests that should have been done months before diagnosis, especially when we went in fighting for mri and ct scans due to lengthy pain, once results came in our trips to specialists and treatments were quick, and we live in northern ontario, canada.  you will probably get different treatment suggestions from different doctors. do your research and go in with as much knowledge on this pc and the stage your husband has. i have found that when i have info in my hand and ask numerous questions about different treatment and the next step if and when the one my husband is on doesn't work, some doctors actually listen. when the doctor told my husband how much time he had left i finally told him that this was not acceptable and he was to do something else to help him. it's amazing that sometimes when you challenge them and don't just take their word for everything, they listen. we no longer ask that question since we both now know and believe that everybody is different.  like you, looking back i wish i had pushed harder with my family doctor when he said it was just arthritis. i had way too much faith in him. except for occaisionaly getting depressed, my husband with a lot of no nonsense positive talking from myself and family (when i feel myself faltering i go to my daughters, son or sister to let go) is trying to believe that he will beat this. it's hard for them when and if they are in pain.  you have a right to get mad at doctors who treat us as if we are just another patient to them. at times your anger will help you get through this. you will cry and feel fearful of losing your husband, i still go through these emotions. that's okay, it will help you keep fighting for him. he needs to stop taking an (if it's meant to be attitude). he has to get mad at the cancer and fight it. my husband went through a period of what seemed like a few months of depression and no matter how many times he said he was not giving up, i could see on his face that he was. i had to cry and get mad at him, for how dare he give up and leave me behind without him. for me this helped get him back to fighting this disease. only you know your partner and what you can do to change his outlook. there are so many people on this site that will help you. i like you do not want to lose my husband. he's my soulmate and without him my world would collapse. take some time to regroup your thoughts, write things down in a journal, i have 2, one for his doctors, treatments, and questions, etc.. and the other for his personal progress. i do believe that change of diet, faith, outlook, and as much as possible less stress all has a strong impact on beating this thing. it is a rollercoaster ride with ups and downs, but when you hit the downs go to this site and reach out for us, we will be here for you. hang in there and know that you are in our prayers and thoughts. lifeline

mariateresa
Regular Member


Date Joined Jun 2007
Total Posts : 95
   Posted 9/24/2007 5:08 PM (GMT -7)   
Dearest lifeline,

My heart goes out to you and your dear husband. Sometimes I just don't have the words to express my sentiments, but I want you to know that my heart aches for you and your husband. Thank you so much for sharing your story with me and reaching out to me with such kindness. God bless you both and you both will remain in my prayers.

Love,

Maria Teresa
Husband Age 55 Maria Teresa age 44
Total PSA 8 on 05/21/07
DRE: prostate bumpy
Biopsy on 07/16/07: 5 out of 8 cores positive, Gleason Score 8 (3+4+5)**
CT of the abd/pelvis; Bone Scan; Xrays done on 08/13/07: Normal
Robotic Surgery Scheduled for September 11, 2007 - Cancelled due to anesthesia complications
Robotic Surgery Rescheduled for September 25, 2007

**"Report to the Nation on Prostate Cancer" published by the Prostate Cancer Foundation, page 11: "In some cases, the pathologist might identify a third pattern, which is less common but that has a higher grade than either of the first two patterns that comprised the Gleason score. The presence of this third pattern might indicate that the tumor is more aggressive than the Gleason score would otherwise imply. For example, if a Gleason 4+3 tumor also has some grade 5 cells, the cancer would be considered as being of higher grade disease overall."

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