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A Dad's Journey by a Doting Daughter

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Posted 9/3/2007 1:47 PM (GMT 0)
Thanks for your posts! My dad is scheduled to fly home the day the catheter comes out. Would you still recommend a seat cushioin?  The flight is an hour and a half direct flight?  Thanks for the suggestions! I really appreciate them all!

Posted 9/3/2007 3:40 PM (GMT 0)
Doting,

Hw likely will not need a seat cushion. If he hasn't needed one yet, he probably won't for a one hour plane ride. Glad all is looking very well.

swim

Posted 9/3/2007 9:35 PM (GMT 0)
Doting Daughter

My hospital gave me a cushion while in the hospital. I used it all the time until recently. I still use it in my office chair now. Every little bit helps especially on long trips. Those airline seats are very hard. Never flown first class though. Glad to hear Dad is getting out of the hospital. Hope he continues to mend.

Mika-mvesr
Posted 9/8/2007 3:40 AM (GMT 0)

Black Friday.

Late this afternoon we received the news that my dad's pathology report came back with a positive lymphnode.  We are all just devastated.  His Gleason is still a 4+3=7, however, his stage is now T3A. N1 MX.  So, back to VM we go.  His Dr. is trying to schedule an appointment with the Radiation Oncologist on Tuesday when he is scheduled to have his catheter out.  We are absolutely heartbroken.  Any positive experiences anyone can share?

Devasated Doting Daughter

Posted 9/8/2007 4:51 AM (GMT 0)

Dear Doting Daughter,

I'm so sorry to hear the results of the final pathology for your good father.  I am not experienced with this, but there are several friends here that have experience with stage T3 or positive biopsies following surgery.  Some of these are:

myman <link to recent myman posts>

TC-LasVegas <link to recent TC-LasVegas posts>

 

anniea <link to recent anniea posts>

 

hawkfan75 <link to recent hawkfan75 posts>

 

These good forum members and others with similar experience should offer you a lot of help and hope.  In addition, your doctor sounds like he's on top of things, consulting with those to give your dad the best options for his next steps to remission. 

 

This quote may also help you "It is important to note that most patients with positive margins are cured. Depending on the number and extent of margins your physician may recommend post-operative radiation to decrease the risk of recurrence." 

The above quote is from the following link: http://www.malecare.com/surgery_page_5.htm

 

You may also find some very good information and links in bluebird's locked post <link> above which is all about providing additional information for forum members.

I know it is easier for me to say, but try to stay as positive as you can.   We'll be here to support you, listen, and pray.

Kind regards,

Barry (a.k.a. Idaho)

- edited 08 Sept 2007 to add hawkfan75 link to post -

Posted 9/8/2007 6:22 AM (GMT 0)
Dear Doting Daughter, I am so sorry to hear of your dad's path report. I, too, don't really know how to interpret it, so I can't offer any practical suggestions. You're in good hands with Dr Porter and his team at VM. There is so much more success with post-surgery treatments than there used to be, and I'm sure the future is not as bleak as it may seem right now. My thoughts are with you and your family.

puget
Posted 9/8/2007 10:20 AM (GMT 0)
Hi Doting,

Hang in there Dear...support is here. TC LasVegas (Tony) and myman (Don and Susan) are both doing well in their treatment. I'm sure 2 of our resident pro's have a lot, much of it very good, to share about their experiences. Our thoughts and prayers are with your Dad and for your continued strength as a family.

Swim
Posted 9/8/2007 4:26 PM (GMT 0)

Dear Doting,

Your dad's situation is similar to mine.  I too felt like I was hit by a brick when my pathology report came back worse than anyone thought it would.  It's part of the pain in this disease.  As you can see by my signature, even though my two post surgical PSA's were <.1, they recommended radiation within the first year to improve my percentages on reoccurance.  I've continued to be very active, and the Zoladex seems to not have strong side effects.  (I do sometimes suddenly feel warm, but nothing like what they say a hot flash should be.)  The docs at VM recommended the HT two months prior to radiation - it seems that will weaken any PC cells so the radiation will kill them.  I've gone through 11 of 32 radiation treatments and things are going well.  I'm continuing my sports officiating; refereed a big high school football game last night and have another game tonight.

My "words of wisdom" are to keep him walking for exercise, and stretch it out more and more especially after the cathedar is removed.  The specialists at VM will give you all the options and support your decisions.  I've felt good with them.  This disease is very treatable; keep your spirits up and fight like....

Posted 9/8/2007 5:08 PM (GMT 0)
Hawkfan-

Thank you so much for your response.  We are trying to pick ourselves off the ground today and your experience is so helpful.  It was horrible to see the hope drained from my father's face in one phone call yesterday afternoon.  He is so strong and has been amazing in his recovery.  He's been on my treadmill walking every day and we got his haircut yesterday.  I too, feel like we have been hit by a ton of bricks.

How has the radiation and HT effected your day to day activities such as work?  Also, did the dr. happen to mention chemo plus HT instead of radiation/HT?  It's so frustrating that this disease is so gray.  The pre-op MRI showed that there was not lymphnode involement and then to have this shocker, just kills me.  We are trying to stay strong and hope that the CT and bone scan come back ok Monday.   Thanks for your insight.

Doting

Posted 9/8/2007 5:26 PM (GMT 0)
Hi Doting,
I understand what you are feeling. We have been through the paces with my stage and I am doing OK. I stay active and forward moving. I have already completed the full array of adjuvant therapies. Surgery, Radiation, HT, and have a great report for you. I believe I can still win this. You guys need to stay positive and really educate yourselves. I highly recommend reading Dr. Myers book titled "Beating Prostate Cancer:Hormone Therapy & Diet". It now applies to your fathers condition and treatment options.

You will likely be told at the radiation oncologists office that your father will need to heal the surgery first. Then if using IMRT, he will be casted then on a daily regimen for between 35 and 40 treatments. You will have the option of HT and it will likely be administered at your next visit with the oncologist. My understanding is that you should start HT for a month or two before radiation. I was 30 days. All of these things are options you need to choose as stage III disease has a lot of contraversy when debating treatment options. Ask your radiation oncologist about WPRT (whole pelvic radiation therapy). This is likely a recommended path since there was a positive node.

I am very sorry about that darn pathology. We are going to get through this and we have to believe. I know my challenges and face them with a true commitment that I will do it head on. I don't have time for depression and won't give in. Your father needs to bring forth that same commitment. If you or your father want to talk offline, my EM address is open in the box on the left under my screen name.

Tony
Posted 9/8/2007 8:24 PM (GMT 0)

I did not have a positive lymphnode, just a positive margin and capsular penetration.  Even after my first PSA of .01, they talked about adjuvant therapy which I'm doing now.  I don't know about the chemo with the lymphnode involvement.  I'm sure they will discuss this with you.  As far as the radiation treatments, they are very good about working with your schedule.  With waiting time, I'm in and out in less than 30 minutes.  I'm retired, so there is no problem with work.  You mentioned in a previous post about your father coming to Seattle.  If he's going to have the radiation somewhere else, I'm sure that can be worked out as well. 

Again, relax a bit and let your dad get healed up, and this will all work its way out.

Posted 9/9/2007 12:55 AM (GMT 0)
Dear Doting Daughter,

First, I'm so sorry to hear about your dad's path results. It's such a difficult time - the emotional and physical stresses of first learning of the cancer, then dealing with recovery from surgery and now this. It takes time for your family to absorb everything that has happened and think about what's going to take place. 


Having said that, I believe your Dad can do well. Since the biopsied lymph node is in the pelvic area - that's good as far as treatment goes. Of course, you're not where you wanted to be but there are treatments for him and decisions will have to be made in the not too distant future...and your father does have one. You heard from Tony & Hawkfan who underwent HT and radiation and are doing very well. Don is on HT (not a candidate for radiation) and he's doing well, also. There are others here who are dealing with similar outcomes.

Give Dad some time and he'll see that he can deal with this. Don & I had to work through shock, disbelief and a whole lot of sadness but it does get better. I don't know why we have this path to walk but I do know no one has to do this alone. We'll be here for you.

It's wonderful you & your husband are there for your parents but please take care of yourself...your Dad will worry about you & your baby just as you worry about him.

Please tell your Dad he has our support.

Susan

Posted 9/10/2007 4:28 AM (GMT 0)

Hi Doting Daughter,

Here is a current news item I found on the topic of having surgery and then finding prostate cancer spread to a local lymph node.  It seems to line up with your father's pathology report.  I believe the article will provide you with hope and show that there are good options available to continue the fight.

Life Extension Daily News: 09-07-07 - Long-Term Outcome after Radical Prostatectomy for Patients with Lymph Node Positive Prostate Cancer
http://www.lef.org/news/LefDailyNews.htm?Newsid=5821&Section=DISEASE

My thoughts and prayers are with your family.

Barry

Posted 9/11/2007 12:05 AM (GMT 0)
The best day!!!!  I am SOOOOO happy to share that my dad's CT and Bone Scan were Negative today!!  Hooray!! We met with a Radiation Oncologist from Swedish Medical today to discuss treatment options and he recommended Hormone Therapy and Radiation. 

We have an appointment tomorrow morning to get the catheter out..another HOOORAYY and plan to discuss options tomorrow as well!  Thank you all for your well wishes and prayers!!!  I truly couldn't have maintained my sanity without all the support!  It has been such a roller coaster of emotions over these past two weeks and I appreciate all the stories, messages, links and support!!  I will keep you all posted and please feel free to share any information you have regarding HT and/or Radiation. 

Doting

Posted 9/11/2007 3:18 AM (GMT 0)

Hi Doting Daughter,

I'm so glad to hear the excellent news!  We say "HOOORAY" along with you!  yeah

You are a great blessing in your dad's life and your strength will add to his own strength to help him on his journey.  

Keep asking those doctors the tough questions and ensure they continue to discuss with him the whys, hows, and the expected outcomes.  Your dad and his family are in the driver's seat!  It is great that you have healthcare professionals who are vested in his results.

My first PSA test following surgery is tomorrow (Sept 11)!  So I have a little milestone as well. :-)

All the best,

Idaho

Posted 9/11/2007 3:23 AM (GMT 0)
Hey Daughter, GREAT NEWS!! All the best to you, your dad and the rest of your family.
Posted 9/11/2007 11:51 PM (GMT 0)

Help!?!? So, we met with a Medical Oncologist today from VM regarding my father's post surgery report.  (T3A N1), she recommends just doing hormone therapy after the first PSA post surgery test (4 weeks from now) and watching the PSA scores until there is a rise and then proceed with radiation.  The Radiation Oncologist we met with yesterday recommends starting HT therpay right away (in a week) and then starting radiation in 2-3 months.  It's so scary, because I was really hoping for two expert medical opinions that agreed.  Does anyone have any advice?  (Besides a third opinion, which we will be getting)  Thanks! 

Doting Daughter

Posted 9/18/2007 2:57 PM (GMT 0)
nono  Dear Doting Daughter

I am lucky like your Dad to have 2 WONDERFUL daughters (soon to be a grandpop also).

I have a good friend who HAD PC 3 years ago at age 67.  His PSA was 50, and a Gleeson of 9.  At the time I was not as well informed as I am today, and thought it was not as serious as it was.  He had surgery, and 8 weeks of radiation.  Three years later he still has a zero PSA.  Another friend had surgery 11 years ago, 2 years later he had a rise in PSA, he also had radiation,and today he is better than fine.  This disease can be controled, and it seems you, and your Dad are doing ALL the right things.  My prayes, and thoughts are with you both

ALL THE BEST!!!!! nono

Posted 9/18/2007 3:32 PM (GMT 0)
Broker-

Thanks so much for the encouraging stories! I really need them!  Some of the studies can be so depressing and I have been a bit obssessive about research. 

I am hoping when my dad comes back up to Seattle in October, that it will be a visit with good news.  For one, my baby is due October 10th, which is exciting and will hopefully shed some joy during this difficult time and his first PSA test is on Oct 16th and we are hoping that is 0.  Thanks again for the encouragment and I am so happy for you and your fight!

Doting Daughter

Posted 9/29/2007 3:56 PM (GMT 0)

So, my dad is going in to Urgent Care this morning because he has a little redness and puffiness near where one of his incisions was following his surgery that has become a little painful.  Please keep him in your prayers this morning.  We are hoping it is nothing major. 

Doting

Posted 9/29/2007 4:03 PM (GMT 0)

Chayna,

You got it. But you both have always been on the prayer list. We will just make it stronger. Let us know how things go.

All our love and prayers,

Walt

Posted 9/29/2007 4:15 PM (GMT 0)
Thinking about you and your dear Dad. I'm told that inflammation of an incision site is not uncommon and can be treated effectively.

puget
Posted 9/29/2007 4:23 PM (GMT 0)

You guys are truly the greatest! Thanks so much! 

Walt...how did it go last night?  I was quite the singing bee last night after reading your post....I can't sing either...so that is not a good thing....good thing love is also deaf because my wonderful husband and dog don't seem to mind. 

Puget-Thanks for the feedback and congrats on your post op PSA!  My dad's is on Oct. 16th at VM.  Hoping for the same outcome :)   

Posted 9/30/2007 1:07 AM (GMT 0)
So.. my dad was placed on antibiotics today for suspected infection at one of his incisions sites.  The Dr. said the puffiness is from the lymphnodes trying to fight the infection and hopefully the antibiotics should clear it up!  He sounded better when he called and I just hope this will do the trick!  Thanks for your thoughts and prayers! 
Posted 11/15/2007 6:55 PM (GMT 0)

I know there has been a bit of discussion on the post surgery PSA (6 weeks vs. 12 weeks) and we too have been curious about which is more "accurate".  My father received his 6 week Post surgery PSA three weeks ago and it was 0.07 and he wanted to retest, so after three additional weeks (9 weeks post op) his PSA came back today at 0.05.  The good news is that it went down..even if just a little.  We take every piece of good news we can at this point!  Who knows if another three weeks would make that much of a difference.  In the long run, the need for additional treatment due to his lymph node involvement is the same, regardless of the PSA.  With that being said.....He will be starting HT this week and radiation in the next month or two.  I will keep you posted on the side effects and experience.  Please keep him in your thoughts and prayers as he begins the next step of the journey.  All the best!

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