Apr 03, 2013 - 2:12 pm
I'll preface by stating that I (the wife) have not been comfortable with my husband's doctor (Urologist) since day of surgery. Why? Because he seems to be talking out of both sides of his mouth. I wish I'd kept a journal of everything that's transpired, because right now I'd be hard-pressed to go back and put it all together in sequence. Since I'd like to just get the "basics" out there right now, this will surely be a convoluted version of what's going on.
I was very happy to have found this site yesterday and have been reading many of the posts. I haven't come across one that is precisely the same situation but I've obtained enough excellent information that I knew I wanted to become a member of this group.
My husband had a slightly elevated PSA several years back. Primary care physician had him re-tested months later but did not feel there was any problem. At annual exam in April 2012, PSA was 7.4. Re-test, September 2012, PSA was 7.2. Referred to urologist, appt. in October 2012. Upon physical exam, urologist felt there was something wrong. Was pretty sure it was cancer but would need to do MRI and needle-guided biopsy to confirm. Because husband was leaving for a 3-week hunting trip the very next day, these tests had to be put off until the week he returned. MRI showed nothing. The needle-guided biopsy results were delivered 2 weeks later and every single one of the biopsies showed cancer. I wish I had the numbers....I know they were all high. I'm still trying to get that report from the doctor's office. I will have it by next week! Unfortunately, I was out-of-town that Friday my husband received biopsy results so I'm not sure precisely what transpired between him and the doctor. I do know the doctor told him that surgery could be done robotically but that he saw no advantages to that. Note: This urologist is not trained to do the surgery robotically. End result was...the following Monday my husband and I were in that doctor's office with the office manager who took care of clearing the doctor's OR schedule for the following Monday and ordering all the preadmission testing that would occur that week. In addition to the routine tests, my husband also requested a bone scan. All test results were good.
Day of surgery (10 days after getting biopsy results), urologist came down to talk to me while my husband was still in the recovery room. He was in my face wanting to know if my husband made me aware of just how SERIOUS this cancer was! Went on and on about how it was one of the most aggressive cells and it would require aggressive treatment. He said hormone therapy as soon as possible and radiation at 3 months post-op. But then said, if is PSA comes back as a 0, he'd be hard-pressed to make a case for radiation. Doctor was very happy with the surgery, thought he did an excellent job of removing the entire prostate. Said there was no evidence of cancer in the lymph nodes.
I'm going to jump ahead here just for the sake of getting the facts out. I finally was able to obtain the post-op pathology report this week. I am still waiting for the copy of the pathology report from his needle-guided biopsies performed 11/20/12. The Urologist does not want me to have copies of the pathology reports, "because there is nothing in them that is positive and I need you to stay positive!" This he told me on my husband's 2nd post-op office visit after doctor removed the surgical drain and the nurse was taking out his staples. Urologist went so far as to say that he knew I had SOME medical knowledge, but that I was not a healthcare professional and he didn't want me on the internet with the information contained in those reports. He told my husband at that same visit that had he waited another 6 months, he wouldn't have even touched him because the prostate gland was "bulging" with cancer. He advised him to take time to heal, he would see him again in one month at which time he would start him on hormone therapy and radiation would start at 3 months. I asked the urologist how long my husband would be on the hormone therapy and without hesitation, he said, "three years."
Pathololgy/Cytology Results: Both lymph nodes biopsied were free of metastatic disease. Prostate and seminal vesicles - extensive involvemen by adenocarcinoma, Gleason 9 (5+4) - Multi-focal extraprostatic extension - multi-focal margin involvement - bilateral seminal vesicle involvement. Bladder neck margin, left, excision - no evidence of malignancy. Microscopic exam: This prostate gland exhibits a remarkable degree of involvement by adenocarcinoma. Every one of the 37 blocks of tissue examined is to one extent or another, often very extensive, involved by adenocarcinoma with 15 of these blocks exhibiting foci of extraprostatic extension, and 7 exhibiting definitive margin involvement. Margin involvement is probably greater but hindered by artifact induced by the surgical excision process. The Gleason score varies widely with the lowest being 3+3 and the highest 5+5, on average the Gleason score appears to be 5+4. Prostate size: 3.5 x 4.5 x 4.0 cm. Lymph Node Sampling: Pelvic lymph node dissection, Histologic Type: Adenocarcinoma, Gleason pattern: Primary Pattern: Grade V; Secondary Pattern: Grade IV. Portion/Percentage of Prostate Involvd by Tumor: 95%. Total Gleason Score: 9. Extraprostatic Extension: Present, non focal. Seminal Vesicles Invasion: Bilateral. Margins: margins involved by invasive carcinoma, multifocal. Treatment Effect on Carcinoma: not identified. Lymph-Vascular Invasion: Not identified. Perineural Invasion: Present. Primary Tumor: pT3b seminal vesicle invasion. Regional Lymph Nodes (pN): pNX: Cannot be assessed.
At one-month post-op visit to urologist, 45 mg. Eligard was administered. My husband asked how long he would be on the hormone therapy and without hesitation, the urologist said..."for the rest of your life." Radiation was not mentioned and, unfortunately, we were so focused on the hormone therapy beginning, we didn't realize the radiation hadn't been addressed until we were getting in the car to go home when I husband said, "I guess I'm not going to get radiation at 3 months since my next appointment with the urologist is ANOTHER 3 months from now." I said I'd call the office hen we got home. Husband said no, it was OK. Well, as time went on, it bothered me tremendously that the doctor has said repeatedly that radiation would begin at 3 months and consistently reminded us that he was "going to be throwing the kitchen sink at this." I called the urologist's office and asked if we could be referred to radiation oncology for a consult. The urologist called me back and was irate, telling me that I was being over-zealous about the radiation, that my husband was not READY for medical oncology and that when he DID get referred, it will be to a radiation oncologist. I stated to him that I never SAID medical oncology, my concern was that he (the urologist) said radiation treatments would be started at 3 months post-op and yet my husband wasn't going to be seen by the urologist again until he was 4 months post op, which would likely put impending radiation treatments to begin at 5 months post-op. His response was...."it doesn't matter if the radiation treatments begin at 3 months or 5 months post-op! But if you want to move his appt. up sooner, by all means, let's take your anxiety away and get him in here sooner!" Ok, so the appt. got moved up a few weeks, only to be moved back even further than 4 months post op...because urologist was going on vacation. (We received a postcard in the mail telling us of the reschedule.) I called the office and said this was unacceptable, so the urologist "squeezed us in" before office hours last Monday. He again said it didn't matter whether radiation started at 3 or 5 months and proceeded to tell my husband that he didn't want to start it too soon because he could guarantee him that his incontinence...at whatever level it is right now....would be worse after radiation. He also told him of all the negatives of having radiation and all but said he wasn't sure he should even have it. However, when my husband said that he'd be fine with waiting another 6 months to have the treatments, the doctor exclaimed, "You can't WAIT another 6 months!" So then the doctor says, "how about if we split the difference? I'll see you back here in 6 weeks!" WHAT?!! Why do we have to keep coming back to see HIM?.
Of note, husband has had two PSA's since surgery. I don't have the numbers and the urologist's office won't give them to me without the doctor's permission. Doctor is on vacation. I do know that they were both zero point something....negligible. He will have another PSA prior to the May 17 appontment...which is exactly 5 months and one week post-op.
I cannot understand WHY the urologist hasn't been willing to refer us to an oncologist for a consultation. I feel strongly that an oncologist should already be involved in my husband's treatment plan. Given my husband's family history....mother died of colon cancer in her 40's, brother died of kidney cancer....diagnosed January 25, 2012 (one day before his 60th birthday) and died one month (to the day) later...totally misdiagnosed, and his father died from throwing a clot due to untreated prostate cancer at age 69....and the fact that this is an aggressive cell and the margins were not clean, I can't wrap my head around the fact that it DOESN'T MATTER if radiation begins at 3 months or 5 months.
Am I crazy to be worried sick that this cancer could be spreading while we await the radiation treatments or is the hormone therapy such a for-sure cure that I should not be worried at all?
I will be grateful for any input!