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Second opinion for follow-up post-surgery

sbw224
Posts: 4
Joined: May 2003

How do we get a second opinion for follow-up treatment after radical prostetectemy? Have not received the post surgery lab report yet but doctor said it looks as though it was not contained. Would like a doctor at Hopkins to look at his case. Receptionist says they only take cases they performed the surgery on. But, they have the most effective follow-up. Anyone, know?

jeffingbmich
Posts: 18
Joined: Mar 2003

sbw and wife,
Let me offer you some reassurance. I found out in December '02 that I had prostate cancer. I had nerve sparring RP surgery on Feb. 10 and was told at that time that it "looked good", then was told a week later that the pathology report showed the cancer was Gleason 7 instead of 6 and 25% of the tissue was affected instead of the 15% they thought from the pre-op biopsy. Most important (and scary), they found that the top and bottom margins were both positive. Six weeks post-op my psa was checked and was <.1, which is as low as they can measure. It looks like the cancer was all contained in the prostate and had not spread to surrounding tissue or lymph nodes. At my second post-op office visit my doctor gave me the option to have radiation soon to make sure we got all of any possible remaining cells or wait until doing another psa in July to see if it rises. I told him I'd prefer to wait and he said that's what he would do if in my shoes.
My point is, focus on healing from your surgery and the rest of this will sort itself out in a relatively short time. Remember, prostate cancer is very slow growing and even if it has spread to surrounding tissue, it's probably not spread very far or to very much tissue. Follow-up radiation should be successful if you need it.
You'll know withing 4-6 weeks after surgery what your post-op psa is and can go from there.
I'm now 12 weeks post-op with excellent bladder control and encouraging sensitivity sexually, with recovery expected within a few more months. I've resumed a very vigorous cycling and exercise routine and went mountain biking last weekend for the first time since surgery.
Keep a positive approach and things will get better each week. You'll beat this sob called prostate cancer!
I'll look for you each week and respond if you'd like me to. I have two friends who went through this three years ago and their coaching has been invaluable to me. I suggest you try to find someone who's been through this process to help you through it. It's like we all belong to a club that we don't want to be a part of, but once you're in it, we all help each other.
Keep the faith!
Jeff

lz3
Posts: 1
Joined: May 2003

Hi,

I'm sorry to bother you with this, but you seem informed and a non-alarmist. My husband goes in for his surgery this week, and though I've read several books, I can't find very much information on what supplies we should have on hand for his post-op. If you have any suggestions I would greatly appreciate it. My e-mail address is lzcc3@earthlink.net

Thank you,

lz3

jeffingbmich
Posts: 18
Joined: Mar 2003

Hello lz3,

For the first few weeks after surgery, the main goal will be to just be comfortable. My wife bought me several loose-fitting flannel lounge outfits (basically pajamas). The stomach will be quite bloated and tender for about 3 weeks so the loose waistband is important. If your husband has wanted to go on a diet, the first week or two after surgery might be a good time to cut back because he's not probably going to want much going through his digestive system. Your doctor probably already told you about Milk of Magnesia to keep BMs soft - very important. Keep a rolled up towel or small pillow handy to press against the incision in case a cough or sneeze occurs (this may be the single most important thing to remember as far as pain containment is concerned!) I suggest locating the catheter bag above the ankle to facilitate easy emptying - much more convenient than on the thigh. Also, don't be too alarmed if the urine becomes dark red or light pink at times - it's most likely a normal part of the healing process. I suggest using Extra Strength Tylenol for pain instead of any narcotics. When the catheter is removed you may need an adult diaper for a day or two, then go to a maxi-pad for a week or two, then a light days pad for another week or two. This is different for everyone but good control is possible in a relatively short time after the catheter is removed, especially if you've been doing the kegel (clenching) exercises before surgery (don't do them with the catheter in-they'll cause irritation).
That's about all I can think of to tell you at this time. Please feel free to ask more questions as things progress. I'll look for questions at this site and reply here so others who are interested can see the information.
I will keep you and your husband in my prayers. Prayer and positive thinking really help here. The chances are extremely good that surgery will go well and so will the recovery and healing process. Keep the faith!

Jeff

sbw224
Posts: 4
Joined: May 2003

Jeff
Thanks for your encouraging words. This is like joining a club but you really didn't want the membership. Where did you have your surgery? I know we have to be positive and take each day and decision at a time. My concern is being passive. And since we followed this so closely before thinking if it became cancer we would catch it very early I am very fearful now. My husband's energies really must go toward healing from the surgery. I don't want to fail him by not getting all the information I can for the most aggressive and supportive post-surgery treatment. Thanks for talking.
sbw

jeffingbmich
Posts: 18
Joined: Mar 2003

sbw,

I had my surgery at Genesys Hospital in Grand Blanc, MI. Some people mentioned that I should've gone to Beaumont Hospital in Royal Oak or UM Hospital in Ann Arbor. They are both fine hospital's with fine staffs and surgeons, but I'm glad I chose my doctor and hospital and have no regrets in retrospect. Having confidence in your doctor is very important. I hope you and your husband have confidence in him. Also, remember that he/she must tell you about all of the possibilities, some of which are not good. He/she will also probably give you some statistical odds on "if A exists, then B will occur X% of the time". I could give you examples but you have probably done your own research on this type of thing.
Did your husband have his surgery yet? As part of the surgical process they will look at surrounding tissue, check lymph nodes, and take the removed prostate gland to pathology for analysis. The analysis usually takes about a week. Your husband's surgeon will probably discuss the outcome with you and your husband soon after the pathologist's report comes in. Like I mentioned earlier, try to focus on the healing process these first few days/weeks and remember, PC is a very SLOW growing cancer with a very high successful treatment rate.
You didn't mention your husband's age, general health and fitness, PSA, Gleason score, etc., or the reason for your concern about getting a second opinion. There is much research available through numerous websites and books on the topic of PC. If you know the details of your husband's case, you can "plug" them into the research tables to get an idea of what the statistical outcome might be. Have faith in your doctor and the hospital. The odds are strongly in your favor that both will (or did) do a fine job.
I'll keep looking for you during the next couple weeks. Keep the faith.

Jeff

sbw224
Posts: 4
Joined: May 2003

Hi Jeff,\
Thanks for getting back to me. I know about the second guessing about where we had the surgery. Everyone around here wanted us to wait to get into Hopkins. We have great faith in the surgeon. He is excellent. We did get the pathology report back. It is very similar to yours. He was a Gleason 6 and it came back a 7. It was 10% in the biopsy and 30% in the pathology report. No seminal vessels or lymph nodes but one positive margin. The surgeon is encouraging follow-up radiation. We need to get all the information now. We have read alot. We have an appointment with the radiation oncologist at here tomorrow and one with a radiation oncologist at Hopkins a week from Friday. We should be able to get some solid information from those meetings and from the reading to be able to make a decision on what to do next. The first PSA reading will tell the story I guess. I'll keep you posted. Your recovery is encouraging and I will pass on that information to my husband. This is just the end of the first week after the catheter was removed and so it is slow going right now. The other guys we know who have been through this surgery were very fortunate because it was very early. That's a different ball game.
Talk to you soon.

jeffingbmich
Posts: 18
Joined: Mar 2003

Hello sbw,

Haven't heard from you lately and was wondering how you and your husband are doing. Hope to hear from you soon. I check this site 2-3 times per week. Hope you and your husband had a wonderful Fathers Day weekend!

Jeff

maxie
Posts: 4
Joined: Jun 2003

Hi and God bless you.I think Jeff hit it right on the head.Just focus on healing.Have as much sexual stimulation as you want.The more the better.I had mine removed at age 46 and that was 3 years ago.I am 100% normal and actually enjoy sex a whole lot better now.If the psa ever does rise at all I would recommend radiation immediately.I think your gonna be fine.Good luck.

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