Treatment Concerns

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Tony1951
Regular Member


Date Joined Jul 2008
Total Posts : 50
   Posted 9/11/2008 10:40 PM (GMT -6)   
It seems as though too much time is passing between diagnosis and treatment.  I suppose I'm in treatment in so much as I've had zoladex shot.  I'm concerned about the Zoladex in that I am not noticing any side effects.  I haven't had one hot flash.  As for ED, who could tell?  I'm so obsessed with that word "Cancer" that I have no intersest in sex.
 
Yesterday I called my Radiologist doc and spoke to his PA.  I reminded them that I wanted my biopsy to be read by a second person.  She left the phone for a moment and came back to tell me that the doc said he didn't know that I wanted a 2nd opinion.  She thought I wanted a 2nd opinion about my treatment.  I told her that this doc WAS the second opinion and that I wanted him to treat me.  She got back with me today and I told her about my concern over the zoladex and she said she had no idea if it was working and asked if I wanted the doc to call me.  I told her no because I se the medical oncologist (Zoladex doc) in a couple weeks.  She said that if I decided on the IMRT, she will set up a time to place the gold "markers" in and call me probably tomorrow.  All of this kind of felt chaotic.  I saw a urologist at Hospital A and had a second opinion at University Hospital B.  Radiology Oncologist doc said I should see the medical oncologist, go on Zoladex, and when I've been on it for 2 months I should start IMRT.  He seemed to feel 6 months of HT would be long enough (2 months prior to IMRT, HT while in RT, and 2 months after RT . Radiology doc then sent me off to the medical oncologist.  Medical oncologist said he would like to see me on HT for 2 years, when I told me I thought it would be six months, he upped the ante, he said that it should be 3 years and that he wanted me on Zoladex shot and Casodex pills. After the shot and prescription for Casodex in hand he asked if my insurance would pay for it.  I told him I have such a large deductable (thought I was bullet proof) that I would have to pay for it.  He then said that there was no need in my spending that much, and decided I could do as well with just the Zoladex. What the Casodex just an after-thought???  Anyway, after my talk with them today I feel that what sounded like a very solid plan was tentative at best.  Maybe everything will be better when I'm actually in treatment and they see me often enough to remember me!  I'm feeling a little irritated.   


Name: Tony  Born: 1951
Diagnosed PCA 7/23/2008;  Prostate Volume 19 grams
Cancer Pocation: Right Mid and Right Apex 2 of 12 cores positive
Percentage of tissue involves 14%  Gleason 3+4=7 4+4=8
PSA levels  6/08/08 7.7;  6/30/08 6.8
Began HT Zoladex 8/26/2008
As of 9/11/08 I am waiting to start IMRT IGRT
 

Post Edited (Tony1951) : 9/12/2008 7:34:52 AM (GMT-6)


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 9/12/2008 12:36 AM (GMT -6)   
I swear, the more people you see, the more opinions you will get and it can be so frustrating with this disease, especially when you are already emotionally drained from dealing with the dx of cancer.  However, in my opinion, all the medical opinions are worth it.  We ended up speaking with three radiation oncologists, and two oncologists after my dad's pathology report came back with a positive margin.  Not only did they have somewhat different things to say, but the one that we liked, my dad didn't like and vice versa.  Ultimately, we were able to gather enough info to make what we felt was a good decision and went with the dr. my father liked best. 
 
Just curious, but why did the one dr. think you should be on HT for two/three years?  Did any tests show cancer outside the prostate?  I wouldn't worry about the side effects of HT, unfortunatley, they will come.  My dad didn't have any for the first month and then he started getting hot flashes.  I hope your side effects are minimal.  Best wishes and hang in there! 
Father's Age 62 (now 63)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


Tony1951
Regular Member


Date Joined Jul 2008
Total Posts : 50
   Posted 9/12/2008 8:31 AM (GMT -6)   
"Just curious, but why did the one dr. think you should be on HT for two/three years?  Did any tests show cancer outside the prostate? "
 
DD, I asked that question too.  I've had an MRI with contrast focusing on the prostate gland and surrounding area.  I'm told there is no sign of any cancer outside of the prostate, in fact they *say* that even though my Gleason is 7 and 8, the amount of cancer 2 of 12 cores at 14% decreases the  relevance of the Gleason scores.  Bottom line when pushed for answers, I'm told that studies have shown that 2 years of HT seems to have some benefit for people with localized or contained prostate cancer.  I'm trying to understand the logic of it in that if the IMRT is destroying the cancer, why not go off of the HT after the IMRT and keep track of my PSA - I don't know.
 
I'll probably change my views on the this, but at the moment, the idea of having a hot flash would at least tell me that something is going on that might be helping me.
 
Thanks for the reply it is much appreciated.
Name: Tony  Born: 1951
Diagnosed PCA 7/23/2008;  Prostate Volume 19 grams
Cancer Pocation: Right Mid and Right Apex 2 of 12 cores positive
Percentage of tissue involves 14%  Gleason 3+4=7 4+4=8
PSA levels  6/08/08 7.7;  6/30/08 6.8
Began HT Zoladex 8/26/2008
As of 9/11/08 I am waiting to start IMRT IGRT
 


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 9/12/2008 9:24 AM (GMT -6)   

Hi Tony 1951,

You seem a bit frustrated. :-)   You replied to a posting I made yesterday and asked if I would share my experience with IMRT and hormone treatment with you. Most emphatically Yes! If you would prefer a more private exchange I can provide you with an email address. I do think it would be good to post here as there are probably others who may find the conversation helpful. (As I did )

Now to your immediate concerns. My signature explains most of the pertinent points on my situation so I will not repeat here. My doctors recommended radiation and hormone treatments due to my high PSA 21.3, 4+3 gleason score, palpable tumor on DRE, high percentage of cancer in biopsy cores and possible pelvic lymph node involvement. The recommend treatment for me was similar to you. Hormone and radiation. Time from diagnosis to hormones was one month and three months to start of radiation. Pretty typical from what I know now.

First the hormone. I used Casodex for thirty days at the beginning of the treatment. The Casodex prevents a tumor flare up when you are given the first hormone injection. In your case Zoladex. I take Lupron Depot 30mg. Tumor flare up can cause bone pain if you have any metastasis. The cancer cells initial reaction to the hormone shot is to grow faster. That is the flare up. Hot flashes did not show up for me until about two or three weeks in. I thought the same as you. "This stuff isn't working." When the hot flashes start, and they will, you will know it is working. The HF's are not that bad. Other side effects are facial hair is lighter. Don't need to shave as often. Facial skin as clear as a babies. And the big one. No libido. I am single and not invloved in a relationship so this has not been a problem. I still appreciate the female form but don't seem to get as reved up as before. I have not had any of the man boobs either. (knock on wood) The length of time is two years. There are several research papers that recommend two years for advanced PCa. I have seen at least one that says six months for localized PCa and another says 2 or 3 years for advanced PCa. In my case two years seems to fit.

Second Radiation. Radiation does not start until you have been on the hormones for 8 weeks. This is to allow the tumor and the gland to shrink some. I just completed an IMRT/IGRT course of 45 treatments. Because of the potential metastasis to the lymph nodes the first 25 were full pelvic as well as prostate. The "markers" are three tiny gold seeds implanted in the gland to act as a target for alignment of the radiation machine and placement of the beam. (Doctor said I get to keep those :-) ) The seeds are placed in an outpatient procedure. The seeds are put in about a week prior to start of radiation. Nothing to get excited about. No pain and a little blood in urine within first 24 hours. The radiation was relatively easy on me. I had some diarrhea and fatigue the fifth week which was the last week of full pelvic. Within 48 hours of the end of the full pelvic I felt good enough to go back to the gym. So, only one week was uncomfortable. Remaining 20 went quick and no problems. Still waiting to see if the residual issues appear at three months but I suspect they will not based on what the radiation techs and oncologist have told me.

One word of advice. (Usually worth what you pay for it) Try to settle your mind and learn as much as you can about your situation. There is an awful lot of "information" on the net and the doctors just do not seem to communicate well. I was lucky, both urologist and oncologist were very good but I went in with some education. I suggest you do the same. Be an informed consumer. It is tough to focus after you hear "you have cancer" but do your best.

Sorry I got so long winded. Tony, I wish you the best and I am always willing to listen or share my experience.

Don

   


Diagnosed 04/10/08
Age 58
PSA 21.5 (first and only test resulted from follow up visit to emergency room for kidney stone. first time for kidney stone too)
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear
Chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
PSA test on July 14, 08 after 8 weeks hormone .82
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
Second Lupron shot 09/11/08
Next PSA test by oncologist 03/09
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/12/2008 10:20 AM (GMT -6)   
Hi Tony,
I like the name. I have advanced disease and have been on HT for 16 months now. I am on a two year plan. I was told that two years is important because cancers cells can survive dormant for that period of time. It is my hope they do not. I am doing well and staying positive.

i have been very fortunate to have the best of care. From Dx to surgery, to oncology, I have been very blessed at some great centers. But I do understand thatpeople have a hard time with their experiences. I am not sure if you can get to another center or not. But the folks helping you should caring and compassionate. I hope once you get with the radiation technician that you get someone that makes it easier for you. My radiation technicians were sweet, and kind.

All my best to you, and get well...

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 9 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 

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