Update

My boyfriend had robotic surgery at Cleveland Clinic today. The surgeon's demeanor wasn't very encouraging at all. The operation took about 6 1/2 hours. He said the gland was stuck to the wall and they had to cut a hole in his rectum, which they will fix. He said it could be from inflammation from the biopsy or inflammation from cancer.  His PSA last week was 15, up from 10 in January.  He said the MRI showed it was outside the capsule, so I expect he will get upgraded to T3 and have to have radiation. Is there anything to prevent hair loss? He has really beautiful long blond hair, it's part of his rock n' roll band image, and I think that will be hard if he loses it.

To make matters worse, his job laid him off Friday to save on insurance premiums (he was a great worker), 4 days away from qualifying for FMLA. I know he can get reduced COBRA, but I'm afraid it will still be exorbitant now that he has a pre-existing condition. Last week I found out I have a tumor in my breast and have a consult for a biopsy on Tuesday. Things are hard and it's tough to feel positive right now.

Thanks for letting me share here and get this out and I really appreciate all the information and support that has been shown to us here. God bless you all.

Dana

Hi Dana,
Sorry about the surgery being so complicated and long. At this point, worrying about hair loss should be the least of his worry. His life and his health are a lot more important. Best of luck in his journey.

Dear Dana,
You are in our prayers. I know it is hard to deal with two crises at once. My wife had a lump in her breast and my cancer returned all in one week. My wifes lump was benign as I hope yours will be. I'm still dealing with the recurrence and I am scheduled for IMRT. Your boyfriend still has lots of options and I'm sure it will all work out for the both of you.

Dana, sorry about the report. Ref. your boyfriend's insurance, many plans continue coverage through the end of the month of termination of employment. Check with the employer. If that's the case, the prostatectony will be covered by the active plan. The COBRA coverage, while expensive, has to provide the same level of coverage as the group plan. Additionally, they can not exclude or reduce your benefit due to pre-x. Pay attention to the election period however, so you do not miss the opportunity to elect COBRA coverage.

When my doctor went over my scans before surgery he warned me that there was a possibility that he would puncture my rectum. But he said; “Don’t worry, I’ll be alert for it and if it happens we can fix it.” I’m thankful that it didn’t happen but it seems that this is not a completely unexpected occurrence and that the repair is within scope of a good surgeon. It may be a small consolation, but apparently this is a complication that doctors are ready to deal with.

As far as hair loss, I haven’t read anything about it on this board and I agree with the point that the radiation is very focused. The most common radiation side effect mentioned seems to be fatigue. Given my positive margins and capsular penetration I may be facing this. The stories of those who have been there have helped raise my courage if I have to face it.

Dana,
No hair loss from radiation. I have one question, why did they do surgery when the MRI showed it had already escaped the prostate? Did the doctor discuss any other options because of this?

You may not have as much to worry about as you think and I would definitely wait for the path report which will be much more definitive about extracapsular extension.

In the first place, it seems that about 30%-60% of patients with stage T1 or T2 show extracapsular extension. So it is fairly common. When you get the path report, plug the information into the sloan-kettering nomograms and you are likely to find about a 70% chance of your friend being cancer free for 10 years.

According to Dr Scardino's book, extracapsular extension refers to microscopic extensions and does not indicate a spread throughout the body. He also says that the options are either surgery or radiation. Elsewhere I read that with stage T1-2 the chances are nearly 90% that the extension is less than 3 mm which is around 1/10 of an inch (which is to say that lots of them are measured in hundredths of an inch.)

Keep us informed and take time to care for yourself as well, both medically and mentally.