Any day above ground is a good one

Setting: Tampa, Florida
Date:October 31, 2005
Location: Jeffrey Starling urologist

My husband and I wait nervously for the doctor to deliver the news regarding D’s biopsy from the previous week. Dr. S. enters the room waving the copies of the pathology report. Dr. S. looks at my husband and says, “You don’t look too upset.”

Dr. S. looks at me and adds, “But she looks upset. I see her sitting there with her pad and pencil and a pile of papers from the Internet. She looks as though she knows what the news is going to be. She looks like she knows already.”

He looks at me and asks, “Well, what is it? Good news or bad?”

My husband is shaking; I can utter nothing.

Dr. S. proceeds to rattle off the cancer content of each core.

True story.

We are still sickened by this.

Halloween. No treat. Wish it had been a trick.
Sadist doctor.

Both Paula and myself are very nervous, she has notes and I can barely focus, we are in an exam room. Dr. Jeffrey B. Starling walks in and kida sprawls out on a stool on wheels. He looks at Paula, she is shaking, and says: ” Look at you there with your notes and internet print-outs. You must know more than I, tell me is he going to live or is he going to die.” We are in shock how could someone especially a Doctor giving someone some the worst information they will receive in their life act like that? What an insensitive jerk. He gives us an unreadable copy of my biopsy results and proceeds to read off the results of each core.

Right Apex, demonstrates moderately-differentiated adenocarcinoma, Gleason score 3+3=6, measuring 0.3mm and comprising 1% of the tissue.

Paula asks for clarification. He drones on.

Right Mid, demonstrates moderately to poorly-differentiated adenocarcinoma, Gleason score 3+4=7, measuring 6mm and comprising 30% of the tissue.

Another question.

Right Base, demonstrates moderately-differentiated adenocarcinoma, Gleason score 3+3=6, measuring 1mm and comprising 4% of the tissue.

And another question, Paula’s voice is breaking up.

Right Lateral Apex, demonstrates moderately to poorly-differentiated adenocarcinoma, Gleason score 3+4=7, measuring 10mm and comprising 100% of the tissue.

I can’t focus, all I see is adenocarcinoma, Carcinoma, CANCER.

Right Lateral Mid, demonstrates moderately to poorly-differentiated adenocarcinoma, Gleason score 3+4=7, measuring 7mm and comprising 80% of the tissue.

I go into a fog

Right Lateral Base, demonstrates moderately-differentiated adenocarcinoma, Gleason score 3+3=6, measuring 4mm and comprising 50% of the tissue.

Dream like I hear Paula clarifying something.

Left Apex, demonstrates small focus of atypical.

I can only think CANCER it is the first time I have seen it on paper. This is real now.

Left Mid, demonstrates benign prostatic glands and stroma.

CANCER

Left Base, demonstrates benign prostatic glands and stroma.

CANCER

Left Lateral Apex, demonstrates benign prostatic glands and stroma.

Paula keeps asking questions to verify what our very bad copy of the report said. She was shaking he was curt. I had to ask what my options were and then he very quickly spewed out my options with very little explanation of what they were or what the impact of each was. He scheduled a bone scan and we leave.

I drive directly to Tower to schedule the scan.

The bottom line is that half of my prostate sampled for cancer some at a higher percentage than others. I have a predominate Gleason score of 3+4=7 which means my cancer is moderately aggressive. The tissue is scored on a scale of 1 to 5 in terms of how aggressive it is. The first number in the score is the type of tissue that is most prevalent and the second number is the type of tissue that next most prevalent. You add the two together and you have your score. You can have a Gleason score of 2 to 10.

I have been trying to understand why Starling was so rude and uncaring, the only conclusion is that he was either intimidated that we were actively participating in what most would understand to be the most important decision of ones life. Both Paula and I are researchers and to us the Internet is a wonderful tool. Starling told us no less than three times not to get on the Internet “it will just confuse you”. Well he was wrong it enlightens me to all of my treatment options and ALL of the side effects. Starling was probably also mad that we were requesting that I get a 12 needle biopsy vs. a 6 or 8 needle biopsy. I am sure that he perceived this as his little fiefdom. Sorry buddy it is my body and you are the hired help. Starling was also irritated that we had already scheduled a second opinion with Moffit before the biopsy was even done at his office. My retort to that is plan for the worse hope for the best or too bad so sad. I think the real reason he was so rude was he realized that he could not manipulate Paula or myself. He is after all a surgeon so if he can’t convince me that surgery is the way to go then he doesn’t make the $$$ on my misfortune. As I left that day I saw a couple of Spanish speaking men with their families, a couple of older men, none of who I would think would do the research to find out about this cancer nor do I think they would stand up to him and disagree.

“OK doc you say cut it out then cut is out is fine with me”

Little do these poor men know that they will most likely be impotent than not and most likely have urinary incontinence than not, because of the surgery. I think he is more interested in his bottom line and has very little interest in the quality of my life after his work is done. So he is fired, gone, bye bye.

Have my biopsy at Starlings today. Today most places are closed because of the hurricane that when though South Florida. The doctor is late and the ultrasound tech comes out to the waiting room to talk to us. There is Paula, myself and another man who is also getting a biopsy. The tech is a man and proceeds to tell us everything about what is about to happen to us. More than I can say about Starling. This guy spent a good 30 minutes telling us all about prostate cancer, most of what we have already read on the Internet, but it was good to hear it from an obviously caring individual. They call me in to get prepped for the biopsy. They use a type of ultrasound that has a needle gun in the ultrasound probe. The doctor gave me a local and he proceeded with the procedure, it took all of 5 minutes. Can’t say it was pleasant but it was tolerable, I have had worse pain at the dentist. While I was getting prepped for the biopsy Paula was outside talking to the doctor and in her own wonderful way, she was insisting that my pathology goes to Bostwick Labs or Oppenheimer Labs. She at this time was told by Starling “don’t get on the Internet, you’ll just get confused”. Wrong thing to say doc. BTW they were already using Bostwick but we still wanted a second opinion from Oppenheimer. About five minutes after the procedure was done I could stand and we went home. I took some pain meds and took the next day off. I was sore for about a week to ten days. We now nervously wait for the results.

Return from Michigan.

And another post to my sister Melanie my best friend in the whole world-

Well, I found a message board for wives of men with this disease, and I posted a note and got a lot of responses- later today Dan started crying because he is scared, and I told him that we would go through this together, and I gave him a xanax, and I want him to go to my psych and get an rx- then we got on the phone and demanded a biopsy so they have one for 11/4; next, I called the insurance co. and got confirmation that we can use Moffitt, and now someone is going to call next week to schedule an appt with a urologist at Moffitt- I then called E. who gave me the name of the best one she knows at M. so we can use Dr. Pow Sang for either the first biopsy if they can get him that early (which would be a surprise) or for the second opinion like you did with Dr. Cox- but at least there is some movement; he has been afraid and has allowed the doctors and nurses to put him off which we know they will do unless you get in their faces- I am tired- I have been eating poorly and stopped exercising a week ago- tomorrow is a new day, and I will exercise and eat right- By the time I see you I should be back on track. It is just hard. Thank-you for writing back. He was nasty because that is how he expresses his uncomfortable feelings. like Dad- LOL I am not asking Dan to reassure me; I know he can’t.

Desperate I joined a mailing list on the Internet called Circle. It is a place where people who are affected by prostate cancer can ask questions, vent emotions, etc. I posted this and within a hour or so received responses. These lists have been lifesavers. I had no one to talk to who could relate except my sister sort of. She was diagnosed with breast cancer seven years ago.

WAITING IS HELL

My husband is to have a biopsy of his prostate soon. It has been two weeks since he saw the urologist who felt something during the DRE and had the results of an MRI which showed a 1 centimeter mass identified as “suspicious for carcinoma” in the peripheral region of my husband’s prostate. I have read at least two hundred articles on the net since I was first made aware of this situation. He has known that something was suspected since September 2 when he was sent for an ultrasound due to his PSA rising to 3.3. Next, he had an MRI which revealed the area I described above. Next, he saw the urologist. Why in hell do take so long to schedule the biopsy? My husband gets very angry if I ask too many questions. I am trying hard to remain cheerful and “in the moment” when I am with him. He says that I am obsessing and that he is not going to deal with anything until he gets the piece of paper that says he has “the big C”. This has been going on for a long time know, and I am just needing some support from someone who may have had a similar experience. My husband tends to clam up and want to be left alone when things are too intense. Well, if he has cancer, I cannot imagine anything more intense than that. What can I do? What should I do?

The following is an email that I sent to my sister.

I just have to write to someone about what I am going through. Ever since I found out that Dan may have cancer, I have tried very hard to get my head straight and live in the moment and focus on cheerful things. And as long as I take a whole tranquilizer three times a day this tends to work out, but I am not sleeping. I awake several times in the night. I have very bad dreams, and I am always feeling like I have a cold- my body aches all of the time and I feel so drained.

Dan still does not know when the biopsy is. He says they only do them once a month— a bunch of people all in one day when they bring this special equipment into the urologist’s office. It sounds like a bunch of crap to me. It has been one month since I first heard of this and it has been since September 2 that he had the ultrasound that led to an MRI that led to this biopsy that is not scheduled.

He gets really mad if I try to talk about it. I am trying hard to act cheerful and casual, but I can’t keep a front up all of the time. His temper is explosive. He is in a bad mood 50% of the time. I feel like this is a form of hell. I feel that we are going to be consumed by this. He will not let me talk to him about this. I don’t know if he is in denial or what. This is just horrible.

I called Dr. Starlings office and requested that I get a 12 needle biopsy and confirm when I will get my biopsy. Also requested copies of the results when they came back.

I leave for Michigan to join Paula.

They have me scheduled for a biopsy on the 14th right in the middle of my trip to Michigan. Called re: rescheduling of biopsy until after I return from Michigan.