HealingWell
Search Close Search
☰

New to PCa - 49 Yr Old - Stage T4,N1,M0

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/8/2011 1:00 AM (GMT 0)
I found this forum through another member on another forum and I am grateful that he mentioned this one.   I listed all of my husband's information in my signature line. The only thing not mentioned is that he already suffers from ED and a weak intermittent stream with nighttime trips to the bathroom. This started about 6 months ago.   We just arrived at MD Anderson last week. After several test, we were told that hormone therapy was the way to go for 6-12 months.   A new bone scan has been ordered, along with a biopsy of his lymph nodes, and an MRI for one spot on his kidney and his liver. Currently, they are thought to be cysts.   Does anyone know if they can start hormone therapy and radiation at the same time?   We both feel we are too young to not be as aggressive as possible in treatment.   Any thoughts, comments, and experiences are greatly appreciated!   Thanks, Angelle
Posted 8/8/2011 1:23 AM (GMT 0)
Angelle,

Welcome to HW. We all are worrywarts to some degree. You and you husband are at a good facitlity with plenty of experts. There are some individuals who have had rad and HT at the same time. For me they suggested a trial of HT of 6 months and then SRT, but I chose not to do the HT. With your husbands PSA I would listen to the Dr.s and maybe get a second opionion. Keep us posted and I hope all goes well for the two of you.

Michael

Posted 8/8/2011 1:38 AM (GMT 0)
With a 4+3, if I would elect RT (I did DaVinci surgery on a biopsy of 2/12 4+3, 7/12 4+4), the HT would have been a given. As proposed to me, the HT should start 6 months before the RT, with the intention of reducing the size of the prostate. So, no, they would not have started together.

Welcome to HW. We hate to see new members, but the door is open.

Posted 8/8/2011 1:41 AM (GMT 0)
Angelle,

Yes HT can be done concurrent with RT. In my case the HT was started about eight weeks prior to the initiation of RT. My understanding was that the HT would shrink the tumor a bit making it a smaller target. This was to allow the radiation beam to be more focused and intended to prevent or lessen exposure of adjacent tissue. (Bladder and colon)

I agree that 49 is too young to not ber aggressive. If you do some research you will find that the Mayo Clinic may still recommend surgery to your husband. Followed by radiation, and HT if necessary. The radiation would be aimed at the lymph nodes.

My stats and your husbands are similar. There is another individual here who had similar stats and followed the path above and has done quite well. I am sure you will hear from him. My results have not been as good as I turned down the surgery and started with radiation.

Best to you and your husband.

Don

 

Posted 8/8/2011 2:01 AM (GMT 0)

Diagnosed in 2006 at age 58. Gleason 3 + 4 = 7. PSA 4.8. Recurence in 2010 when PSA went to 0.4. Decided on IMRT and 6 month HT treatment together. Ended the IMRT in Sept 2010. First HT shot a couple of weeks before IMRT treatment started. PSA at 0.01 in May 2011. So far i feel great. Not much in the way of side effects since HT ended.

Posted 8/8/2011 2:06 AM (GMT 0)
Thank you Michael.

We are just looking for some options to present to the Doctor and let him explain to us why it is not a good idea.

To sum it up, we are LOST. This came as a total shock to us, especially after getting the 2006 report indicating a PSA level in which he should have seen a urologist at that point in time. We are basically newlyweds... as we were married 4 months after the 2006 report. This is a major shocker in so many ways. We never heard the term PSA until last month. We are trying to stay positive but we are both really angry at the doctor who dropped the ball. Things might have been so much different at that point with many more options.

I have done days and days worth of research, but at some point it all rolls together and becomes cloudy. I've been making it a point to take notes as I read things.

How does one determine how fast this cancer progresses? We have so many questions and so few answers. Or, perhaps the answers are their and we are not accepting them...

Thanks again!
Posted 8/8/2011 2:19 AM (GMT 0)
I replied to Michael before I saw all the other replies...

142, I read your link. I admire your maintaing a sense of humor as you endured your raditation treatments. A positive attitude seems to be on important "to do" list! Thanks!

Don, thanks! I will do more research on the Mayo Clinic. I am thinking the person you mentioned is TC? If so, I look forward to talking with him soon.

Thanks NCOBJIM! At least I am getting confirmation that doing both HT and whatever form of radiation they plan is not out of the question.

Thanks again!
Posted 8/8/2011 5:14 AM (GMT 0)
I explained the HT / RT combination timing badly. The HT would likely start first (as they originally suggested for me if RT had been the primary treatment) and continue for 2-3 years. The RT would have started about 6 months after the HT started.

So, would I still have been on HT while undergoing RT? Yes. Would they have started together? No. The timing (weeks/months) to wait for RT to start would be determined by the Rad. oncologist in the treatment plan.

Hope that makes it a little clearer.

If we could only answer the progression question ... There are statistics, but each case is unique.

 

Posted 8/8/2011 5:57 AM (GMT 0)
142... Thanks for clarifying!

Yes, progression is the million dollar question.

Thank you!
Posted 8/8/2011 1:45 PM (GMT 0)
OMG! I would be very angry at that 06 dr. also. But, right now you need your energy and focus to decide the best treatment path. So dont waste your time and energy on him/her. Yes, you have a lot to learn and consider in a short time and it can really get confusing and seem to all blend together or not make sense. That is where we can help, but always keep in mind that we are not Dr.s. With that said, I noticed that one of his symptoms was weak stream and having to get up at night. That indicates he is not voiding completely. Guess what? That is exactly what I was dealing with for years. In my case, many years ago, I was diagnosed with an enlarged prostate. The enlarged prostate was squeezing off the urethra. I also developed shy bladder, due to the embarrasment of walking up to the urinal and not being able to start a stream. MD Anderson wanted me to start HT along with a trial of albiterone, then RP followed with RT. MD Anderson was my second opinion. In my case, the first Dr. made more sense to ME. With immediate RP, I was getting a 2-fer. First, we were removing the tumor and second, I should be peeing like a teenager once my cath is removed.

My first Dr. also said RT would be a bad idea for ME, because the SE (side effects) would make urination even more difficult.

I wanted to share my story with you, because it seems that your Husband and I have similar stats, symptoms, high psa. I am waiting on the path on the lymph nodes. This was MY decision and I am not saying it is the best for your husband. Please try to stay calm, weigh all of your options and ask many, many questions. Dont be afraid to ask any Dr. any question. It is you and your husbands health. It must be YOU and HIS decision. Best wishes.
Posted 8/9/2011 9:13 PM (GMT 0)
Startech....thank you!

I feel better knowing that for all the research I have done, and now my brain seems to have gone AWOL on me, that I am not alone in that regard.

It seems like MDA is not giving an option of surgery. Basically HT, then RT.

Can any or you give me some solid questions to ask for our appointment tomorrow? We actually have several appointments (BS, BX Lymph nodes, urologist, radiologist) over the next few days and meet with the medical oncologist Thursday to discuss further.

All of my husband's stats are in my signature line, but I think I wrote the staging part wrong. The doctor said T4, with positive LN, SV, and tumor he could feel. So please pardon if I wrote that down wrong.

Thanks for any suggestions on questions!

MsWorryWart/Angelle

Posted 8/9/2011 9:36 PM (GMT 0)
I would suspect that they are not proposing surgery because they already see lymph node involvement. Coming from MD Anderson, there is a certain authority given to the argument that I might not feel if it were Dr. Bob.

In my discussions with my uro/surgeon, it was said that once there is evidence that the PCa has gotten out into the system (i.e. lymph nodes in your case), that surgery might do more damage than good. This is why they do the bone scan and CT scan. They actually did a quick pathology on the lymph nodes before starting the prostate removal during my surgery. Better explained, surgery is not completely ruled out, as it could reduce the tumor burden, and in some cases remove an extremely large prostate that blocks urine flow. BUT, the side effects of surgery, incontinence and ED, could be too much for too long.

So, I would ask why surgery is not offered as an option, so that at least you will understand their logic.

Posted 8/9/2011 10:43 PM (GMT 0)
Angelle, keep up the good work. You mentioned you are seeing a urologist tomorrow. He may also be the surgeon. The thing I liked about MD Anderson, was how fast they get you to see all the specialist. The downfall of that is too much too fast can be overwhelming. So record your visits, they wont mind. Then you can re-listen to them to avoid the overload. Here is a link to questions for each oppointment. You already have some answered already.
http://www.yananow.org/questions.htm

www.yananow.org/questions.htm
Posted 8/10/2011 2:53 PM (GMT 0)
Hi W.W. I see you made it over here...Have you read Dr. Walsh's book? Or Gerald Chodak's "Winning the battle against prostate cancer"..Either one of these (or both) will give you the foundation you need to make the decisions you are facing...

Yes indeed, HT is frequently used to prepare the patient for radiation therapy, and it usually continues through the period radiation is being administerd. HT has been shown to greatly improve the effectness of radiation treatment.
Posted 8/11/2011 12:50 AM (GMT 0)
worry....I just recieved my first Lupron shot almost 4 weeks ago and am on my 8th radiation treatment out of 45. In just 2 weeks my PSA went from 94 to 56 and they tell me thats good. I am recieve Lupron as part of the GTX clinical study so its free and they give me 30 bucks a day for gas. My doctors said since I was young and gleason of 9, it was best to attack it with both Hormone and rad. will let you know how it works out.

it took me 3 Uros before I found one I can trust.
Posted 8/11/2011 3:07 AM (GMT 0)
Startech...thanks! You're correct, it is fast and overwhelming! I am recording the visits, so I can wrap my brain around them later and make notes for questions.

Fairwind...Yes, I found my way here! I think you dropped some breadcrumbs, so thanks! Yes, I did read Dr. Walsh's book. Actually, I keep re-reading it as things progress. Thanks!

Casper... Thank you so much for your post! At least I know it can be done and we will ask the oncologist about this tomorrow. Thanks again All!

PS...and thanks to the guys for putting up with me in the Chat!
Posted 8/12/2011 10:08 PM (GMT 0)
I'm upset reading your news...what is the doc saying about the 4.6 PSA years ago?  That was a clear miss on his part.  I'm also saddened that he did not push the issue to continue on with annual PSAs.  But hopefully treatments will be successful.  A reminder to everyone how important PSA testing is from 40 on. 
Posted 8/20/2011 7:31 AM (GMT 0)
41diagnosed,

The doc who dropped the ball isn't saying squat, but I know he can't be enjoying reading the very gloomy reports that MD Anderson is carbon copying to him. They clearly state for some reason this. 4.6 PSA was not addressed by (named doctor) and for 3 years following, there were no PSA test at all.

I am having a hard time getting past my anger at this doctor. He totally made it a game changer by allowing 5 years worth of aggressive cancer growth. I am working on directing my anger into doing more research so we can make a more informed decision... IF MD Anderson allows us to decide...
Posted 8/20/2011 11:05 AM (GMT 0)
Are you in the Hoston area or do you live in anothe city. The reason I ask is MDA is a great hospital but there are other great hospitals that treat prostate cancer. You may want a 2nd opinion if you are in another city. Just asking. It seems like you are dealing with this in a great way. You are doing your homework and not looking back. I am 51 but was diagnosed at 48. I bet I had cancer a few years before diagnosis but my regular doctor kept saying my PSA was <4 so don't worry.....
Posted 8/20/2011 11:54 AM (GMT 0)
I have not read all the responses however your question was can you do radiation and hormones at the same time.
I was diagnosed at 45 had positive lymph nodes and my surgery was aborted. I would highly doubt that surgery would be suggested in your case since it has spread. I started 42 rounds of radiation and had ADT3 hormone treatment at the same time. I had two years of hormones and it worked perfect for me. I will gladly share any information I can to you. If you would like send me an email.
peace be with you and I pray for quick healing

Dale
Posted 8/20/2011 1:47 PM (GMT 0)

41diagnosed said...
I'm upset reading your news...what is the doc saying about the 4.6 PSA years ago?  That was a clear miss on his part.  I'm also saddened that he did not push the issue to continue on with annual PSAs.  But hopefully treatments will be successful.  A reminder to everyone how important PSA testing is from 40 on. 

I can see how this happened....many people have a Phys. assistant as primary doctors and they are really not much more than a high speed nurse.  My first PA went thru all my bloodwork stats with me for my 50 yr physical. and he didnt know what half the numbers stood for.  Then he got to my PSA and told me it looked high and should be aroung 10 or 20!  He didnnt have a clue.

Because Im retired soldier I have the same coverage as a soldier except I pay a small premium... we must use channels on base before going to a specialist.  Our first doctor will always be a PA,

I told my PA I was having symptoms from the flomax and cipro he put me on...he pulled out a paper notebook that had yellow pages that looked like he had it in vietnam..(he was a medic in vietnam)....and he had 3 pencil written side efffects for flomax!

I went online and found my side effect for flomax as well as about 200 other side effects. even the sheet I got at the pharmacy had 2 pages of side effects!

If my PSA had not been 94 and had been 6 or 7...he would have blown it off like all the other blood results from my 50 yr. physical.  Then I have to deal with tricare which has a network you must follow. my first 2 uros were local and totally incompetent....then I got referred to a 3rd one in rochester and had my appt. all set up only to see another referal come in a week later with some other doctor in watertown (local) I called my insurance and they told me hes out of network.....So i finally got one in syracuse that Im very happy with.  With all this I probably lost 45 days of time due to poor doctors...incompetent PAs, etc.  Im not sure losing 45 days in that big a deal but It was the first time Ive ever had any problem my entire life where I had to see a specialist and I just took for granted they all had my best interest at heart and they all knew their Jobs......Boy was I dead wrong.  Yes, I had to learn the hard way but It will never happen to me again.  I now research my A#$ off on each doctor, mediaction treatment or anything else related to my general health.

Finding this website and the yano website has made me realise there are many incompetent doctors out there who are in it for the bucks and you MUST take your health in your own hands.

I thank most of you here and other web sites for making me see this. 

✚ New Topic ✚ Reply