Jeff & Becky's Journey

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2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 11/6/2006 7:24 AM (GMT -7)   
Hi
I'd posted this on another thread and Linda suggested I posted it as a new topic, so here goes ----

. I'm a new member (just found the site today) and have already found it be very helpful. I wanted to specifically comment to JayMan56 - please do whatever you can to have your surgery as soon as possible..Back in July my husband (age 45) had a routine exam and the Dr. thought he felt a nodule on his prostate. His PSA score was only 2.5, elevated from his last score, but not anything extreme. They gave him a series of antibiotics, and his score dropped to 2.1. They decided to schedule a biopsy - I guess that was about the 2nd or 3rd week in August. Our appt. to find our the results was Aug. 25th. The week before that my 20 year old son was fond to have protein and blood in his urine, and was advised to see a nephrologist to find out if he had kidney disease. On the 22nd we found out that my dad's adenoid cystic carcinoma had returned with a vengeance, invading almost the entire inside of the right side of his face. I honestly didn't expect my husband's biopsy to turn up anything, but it did. Out of 12 samples, 2 showed cancer - one 3%, the other 4%. His gleason score was 6 - what the pathology report indicated was low risk. His prostate was not enlarged and he'd had no symptoms of any kind of prostate trouble. The cancer was not found at the nodule site.

Needless to say, I was very emotional - the Dr. reassured us that with my husband's age, physical condition and the pathology report, we had a great chance of recovery. My husband had already decided that if the biopsy came back positive, he wanted surgery. Our 18 year old son was leaving for USMC bootcamp 2 days later, & would be graduating the day before Thanksgiving. Since the cancer appeared to be non-aggressive and the Dr. said the pathology wouldn't change a whole lot even going in to Jan., we initially thought we'd wait until after the holidays. Part of our decision was based on my husband being self employed in Construction, and we needed to set money aside for the weeks of work he'd be missing (at least 6 weeks because of the lifting he does).

We went to church that Sunday and the pastor was speaking on God's will, and why bad things happen to good people. He mentioned both the situation with my dad and my husband. After the service so many people came up to us, encouraging us with information about their own family members who had experienced the same thing, and how well they did. But over and over people kept telling us not to wait. One lady whose dad is recovering from prostate cancer told us money was no object, that they would take care of my husband's pay. We were stunned. The next day our pastor called and said he'd had 5 families that had come up and offered to help cover my husband's wages, they didn't want finances to influence when we scheduled the surgery. In the end we received 6 weeks of wages plus an extra $3,000.00. We figured maybe God was trying to tell us something about the date of the surgery. So we told the Dr. we wanted it done in Oct. - now we just had to see what was happening with my son and my dad.

My son's subsequent blood and urine work showed no sign of kidney disease, although he still had blood in his urine. Our nephrologist told us he'd worry aobut the kidneys, we had enough to take care of. So at this point we were waiting on what the Dr.s said about my dad. He was referred to a specialis at USC (he's in CA, we're in NC). Initially they decided to do an extremely invasive surgery, basically removing half of his face, then rebuilding it. The insurance approved it, but they had to do a full body scan also. While we were waiting for that to happen, our Dr. called to schedule the surgery for Oct. 6th. I panicked, knowing that I would be needed to help care for my dad, and my husband. For a week we were on the phone with the Dr., trying to reschedule for later in the month. I thought for sure they would get my dad in as soon as possible because the cancer was so close to his brain. Our Dr. came through with a date of Oct. 17th. Now we were still playing the waiting game with my dad, and the schedule was getting tighter.

He then got back the results for his body scan. The cancer had spread to his liver, lungs, spine and hip. We were devastated. He was relieved. He was so worried about the surgery - it's 8 months to a year to totally recover. The Dr.s decided to treat his hip with radiation, and his face with cyber knife radiation - very cutting edge. The cancer in his lungs and liver is in multiple spots, but very small.. When his spine starts to bother him, they will hit that too. They said if they requested all of it the insurance would deny it, saying he's too far gone. They told him that he had a year plus, and that they can get his quality of life back to what it was. Since then the cancer grew rapidly in his face, pinching the optic nerve so that he lost his vision, and putting him in escruciating pain because of the swelling. Fortunately they started the cyberknife last week, and after one treatment the cancer visibly shrank, so he will be comfortable soon. They also believe he will recover his vision.

So I didn't need to go out to help with recovery, his girlfriend could handle it, and we went ahead as scheduled with my husband's surgery. Everything went great during the surgery, the Dr. was extremely happy with how the nerve sparing part went (and so were we). Having it done laparoscopically made recovery so much easier. But the day after the surgery the pathology report came back. There was more cancer than thought, and on one spot it was in the margin, up against a muscle wall. The Dr. said it was in a very unusual spot - not an area where they typically find it. I know everyone holds their breath as they wait for that first PSA result. We're hoping that what they found in the margin IS all the cancer that there is. But I'm so grateful for our friends and family who pushed us to get the surgery done as soon as possible. 3 more months for it to grow outside the prostate could have really hurt his prognosis.

becky

spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 11/6/2006 8:40 AM (GMT -7)   
Hi 2busymom,

I wish to welcome your family to our family. You have certainly been through a tumultuous past 4 months, and I can't imagine what it must have been like. How did you manage to cope? It is an amasing story how your husband was guided by divine hands to get the surgery done so soon. Hopefully his recovery is progressing well. I pray that your son's condition will be healed, and that your Dad is comfortable and without pain. Please continue to count on us for support that's what we're here for, and don't forget to take care of yourself.

Glen
Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 ot 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. boundaries
DaVinci surgery on 02/23/06
 


2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 11/6/2006 2:30 PM (GMT -7)   
Hi Glen - thanks for the welcome. I think several factors helped with us coping - the first being so many things were going on at once, I didn't have a chance to obsess over any of them! Definitely our faith - God has proven Himself to us before, and we knew that although we couldn't figure things out He already knew everything. We do have awesome support - I've only had to prepare about 4 meals since Oct. 17th - we had so many ladies bringing food - and it quantities so large I've got at least 3 meals still frozen. We have a Dr. we really like and trust - GREAT bedside manner, gives us lots of time, very humble. And then there's my husband. I am so proud of how well he has handled this - it's such an example to me. When I'm at my end and crying he's so comforting and just says, "It is what it is. We'll get through"

We had our follow up today and it went fairly well - at least I know we have a game plan.
Although there was quite a bit more concer in the prostate than the biopsy showed, the gleason score remained a 6. And although cancer showed in the margin, right up against the bladder, our Dr. isn't convinced that it has really spread outside the prostate. He examined the slides and pathology himself after we got the results. So in early Jan. we will have our first PSA, which will give us an indication of the next step. If it's elevated, we will probably follow up with radiation. Hopefully what he found at the edge of the prostate is all that there was.

He also gave us viagra samples and set out a plan for that, and answered all of our questions. (And after reading stuff here, I had a lot to ask!)

So all in all it was good. Now we just have to wait - like everyone else does. I guess it will always be a bit of a waiting game, to one degree or another.

becky

lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 11/6/2006 2:40 PM (GMT -7)   
Becky .. . . . .an amazing story of faith and strength! Thank you so much for joining this site and sharing your journey with us. We will continue to support you and pray for successes in all areas.
;o) Linda
Husband (Bob) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6.  Follow up PSA results and pathology results due Nov 14, 2006.
 
Also taking Hydroxyurea to control Polycythemia (elevated red & white cells & platlets) has secondary condition . . Myelofibrosis)


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 11/7/2006 5:18 AM (GMT -7)   
Becky,

thank you for sharing your journey, which certainly has a lot of detours in it. I had a hard enough time dealing with Jeff's cancer, much as less anything else in life. but as they say, He'll never give you more than you can handle. you have the most important thing - Faith - and a wonderful support group. wow, your son is very brave to be joining the Marines. semper fi! here's wishing you lots of good things!! kat
Husband Jeff 56 years old
diagnosed July 27, 2006
PSA 6.5
2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1
no more pads Oct 12, 2006


2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 11/18/2006 6:22 AM (GMT -7)   
Hey all, I have a few more questions (with I'm sure many to come). It'll be 5 weeks since the surgery this coming Tuesday. Jeff's energy is great. He still wears a pad, but a very thin one and just has a few drips here and there. He's practicing his kegels, and walking, running around town etc. Chairs that aren't cushiony enough are still too much for him- I notice him sitting sideways. On the days where he's had more activity he's really aching inside. To be honest, we thought maybe this corelated with times he's had an orgasm, which also makes him ache inside. So we cut back on that - he's taking 50 miligrams of viagra a day, and we still stimulate just to get some blood flow going. There's thickening and lengthening but no erection. But at least his body is getting used to it and he hasn't had one of those bad headaches. Next week he'll try 100 again and see what happens.

We were just wondering if the aching at this point is normal, and if it's related to the stimulation or just to being up and about. He goes back to work the week after Thanksgiving, and will be on his feet all day, and we're just concerned how well he's going to do.

Oh yes, he also developed some type of bladder/urinary tract infection, so he was having burning. He's on antibiotcs and is feeling better from that.

thanks, bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA in 1/2007


Wicket
Regular Member


Date Joined Aug 2006
Total Posts : 316
   Posted 11/18/2006 8:03 AM (GMT -7)   
Hi Becky,
 
It has also been 5 weeks last Tuesday since Curtis' surgery and he was aching very bad in that area.  We went to the doctor's and was advised to take Ibuprofen and that has certainly helped.  And it didn't take long at all for it to start taking effect.  Apparently the area was inflamed and the ibuprofen is just what was needed.  The doctor discribed the pain as sitting on a ball and Curtis agreed.
I hope this helps!

Ellen
 
Curtis, 63, Diagnosed Aug 21, 2006
T1C
Gleason 3+3=6, 3+4=7
PSA 4.10
Bone Scan Negative!!
 
DiVinci surgery done Oct 3, 2006
Catheter out Oct 11, 2006
After surgery T2C and cancer found on both sifes instead of just one.
Pathology report came back clean!!!


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 11/18/2006 10:25 AM (GMT -7)   
Bec,

It has been two and a half weeks since my Da Vinci and the aching has alleviated a lot. I still have some just in front of the rectum but it is not bad enough for me to take anything for it. Doing the kegels makes it ache more. What I do have is a sense of swellling in the perineum area and I assume that is the inflammation from the surgery. I have not worked toward an orgasm yet as I will start Viagra this coming week. I actually feel better when I am standing then sitting. He is just probably going through the normal recovery and will get better.

Tamu
Diagnosed 7/6/06
1 of 10 core samples, 40%
Stage T1c, Gleason 3+3
Da Vinci on 11/01/06
56 Years Old
Post Op Path
Gleason 3+3
Prostate Confined


2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 11/18/2006 10:33 AM (GMT -7)   
Thanks. He did switch pads, which has helped. The men's depends seemed to put more pressure in that area. He has been taking Ibuprofen, which also helps. I finally watched a video of a prostate surgery from Vanderbilt, and it is a lot more invasive in that area of the body than I realised. He probably had some inflamation from the infection, so I'm hoping when that clears up he'll feel a difference. Our son graduates from USMC bootcamp next week, and Tuesday is family day and we will be doing LOTS of walking around the base. I just want him to be as comfortable as possible.

bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA in 1/2007


JayMan56
Regular Member


Date Joined Oct 2006
Total Posts : 61
   Posted 11/19/2006 11:10 AM (GMT -7)   
Dear Becky.... thanks for your advice. I'm glad I went into the forum to catch up on new posts. I see you mentioned me in your lead post on this thread.

I have been very unhappy with the February 6th scheduled date. I abhor sitting around and waiting for 3 months to get the surgery performed. I made the appointment with the surgeon but begged his scheduling person to get me in sooner. My friend whose sister is married to a surgeon in the same hospital group used whatever influence he had to get me a new date. Apparently this seems to have worked since the doctor placed me on his schedule for January 26th. I'm still not happy about that date...... I kept an appointment with yet one more surgeon in Miami. I liked this person, he had about 150 DaVinci's for prostatectomy with good results. I asked him when he can schedule me and he responded with a mid-December date. This is a relief. I will be in touch with his scheduling nurse tomorrow for a firm date.

Becky, I am inspired by your faith......

Hugs,
Jay
  • 56 year old male, divorced
  • Diagnosed: 10/12/06
  • Two of twelve samples contained malignent cells, Gleasons: 3+3=6, 3+4=7
  • Last PSA as of 11/5/06: 2.3
  • Scheduled a DaVinci Robotic procedure for Feb 6th
  • In control, but partially terrified about the future
  • Click (or paste) this link to watch the DaVinci Procedure: http://www.or-live.com/ShawneeMission/1664/event/webcast.cfm?


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/20/2006 2:06 PM (GMT -7)   
Boy Becky, when it rains it pours!! You and your husband must be special people, not because of whats happened to your families health, but to think that all those people are offering to help you is just unbeleivable! You are blessed and I'm sure everything is going to be fine when all is said and done. You came to the right place! I am new here and the inspiration and support from this group is truly something. I had the same kind of on the edge of the wall as your husband which scared the crap out of me. But it's been 3 1/2 years and my PSA is still nearly undetectable where we like it to be. I will be praying for you and your family.
Hang in there,
Pete
53 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg.  


2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 11/25/2006 1:27 PM (GMT -7)   
Pete, thanks so much for the encouragement - it really does help to have others share their victories! And Jay, I'm so glad they're getting you in sooner. You still have tome to prepare and learn everything you can, but no unnecessary waiting.

It's good to see everyone's posts. We went away for Thanksgiving. My 18 year old son Caleb graduated from USMC bootcamp in Parris Island, SC, so we drove from Raleigh. We had rented a beach house pretty cheap with some other family members, and had Thanksgiving there. It was wonderful to see my boy again - he looks so handsome and grown up. We got to go all over the base on family day, see where he lived and trained etc. The weather was FREEZING Monday and Tuesday. The wind was howling, and we had rain and sleet as we drove around the base. But the ceremonies were awesome, and it started to clear up on Thanksgiving day. It's good to have my brood all together again, at least for a while. My son will have 10 days leave, then will work with the recruiter through Christmas here in town, and then head to Marine Combat Training Dec. 27th. After that it's on to his special training for the job he'll have, in aviation support. After about 3 months he'll be posted at his base - hopefully here in NC. He now knows all the details of my husband and my dad's situations - we hadn't shared everything with him while he was away.

My dad isn't doing too well - he thought he was all done with his radiation and now they've told him they have to hit the lymphnode in his neck twice a day for 30 days. He is so week and exhausted. The inside of his mouth started bleeding, quite a bit from the tissue that is compromised from the heavy radiation. Depending on how he does over the next week or so I may need to fly out to LA. ( I was gong to try to wait until Jan.)

Jeff is continuing to recover well, I guess. He starts back to work on Monday. He can still get pretty achy, but we can't really pinpoint a trigger. His energy and attitude are great. He has such a good sense of humor, and that helps through some of the difficult stuff. He doesn't waste time worrying about things he has no control over - I need to learn from that. It's a good example to me.

Well I'd better go. All the guys are out working or shopping, and I need to take advantage of having the house all to myself! I really looked forward to getting back home and seeing the updates from everyone, and the things I need to pray for. It's so funny, Jeff got on for the first time the other night to look at some of the posts. I wouldn't let him read the ones I'd posted - I felt embarrassed by him reading what I'd written about our sex life (even though I tell him all the questions I ask you guys.) I'm so thankful to have a group of people I can really share with - who TOTALLY relate to and understand all the angst.

Hope all of you continue to have a wonderful weekend -

bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA in 1/2007


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 11/28/2006 8:09 AM (GMT -7)   
Becky,
It's funny how sometimes we have more incommon with each other than just our PC. My oldest son graduated from Navel Recruit training at Great Lakes, Ill. last June. We went to the graduation which was awesome also. He is training to be a "Fireman" which is one the guy's who takes care of the missles & controls on the ships. He has been training since we saw him in June and just got his orders the other day. He is going for more training in Va. somewhere for another 15 months then it's to a ship. He is coming home Christmas and as you know, his mom, brother and I just can't wait to see him, it's been a long time! Anyway, I know this was off track but I couldn't help replying!
All Ways my Best,
Pete
53 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg.  


2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 11/28/2006 6:12 PM (GMT -7)   
Hi Pete,

Congratulations on your son! I'm sure you will have such a wonderful Christmas with your family. I'm so grateful for the extra time we'll get with Caleb. I have 4 sons, and with Caleb home and done with bootcamp I feel so much more relaxed. I didn't realize it until we got home with him. I thought most of my stress was coming from my dad and Jeff's cancer - but I guess having my family separated for the first time was bothering me more than I knew. I think it'll be easier when he leaves this time - I will only have to go 3 weeks without being able to talk to or email him. And he just seems so ready now - much more confident and sure of himself (or maybe I'm much more confident and sure of him?). Anyway, for now I'm just enjoying having everyone under the same roof and accounted for. I'm sure you and your wife are looking forward to the same thing - enjoy your time!

bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA in 1/2007

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