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I would like any opinions and feedback from the forum members. I am a concerned spouse. My husband's PSA was elevated Oct 2, 2009 from the past year and half to a new 4.5 with a negative DRE and no other symptoms. Since his PSA went up enough for concern, a biopsy was performed by his urologist on Oct 28. The biopsy results were provided us Nov 6.
Out of 12 cores, one core showed 1/10 needle sample of cancer, the needle sample core above this showed HPH (High Probable) and the other 10 cores
benign. Early detection. Gleason 3 + 3 = 6 and T1C.
My husband wanted the DaVinci RLP surgery as soon as possible which was scheduled for Dec 7 during our Nov 6 meeting. I assume Dec 7 was the earliest for the doctor. His urologist does the DaVinci, but I am not sure how experienced. We have since done much reading, research, and met with a rad/ocon this past month of November.
When my husband went for his pre-op appointment today, Dec 1 with his urologist , for some reason the doctor had given up that Dec 7 date to someone else? The doctor and my husband are looking into Dec 16 afternoon surgery date because the doctor has another RLP in the morning.
I had gotten my husband an appointment with John Hopkins head of robotic surgery on Dec 3 for 2nd opinion and consultation. But my husband wanted the earliest surgery date and had me cancel it.
Based on this information and my worry since Nov 6, I do not feel comfortable with his Doctor, the cancel of the Dec 7 surgery date, and whether the doctor could do two RLP the same day.
Since his cancer on Nov 6 was T1C and a Gleason of 6 and as his spouse should I support the Dec 16 surgery afternoon date if urologist can do it. It sounds selfish and would like to get a second opinion at John Hopkins or University of Virginia Medical Center for possible surgery after the New year.
My husband's urologist had also told him he could do 6 months of watchful waiting which my husband did not want to do. My husband is 63 and we have had some ED (Viagra). We are concerned that any delay will cause the cancer to spread.
My mother passed Jan 26 from lung cancer and we had planned to go back to California for the first since the funeral for Christmas. No family support here.
If it is my husband's wish, do we stay with the new Dec 16 RLP surgery date, get a second opinion from the other notable urology centers named above, or start anew Jan 1.
Thank you for any words of guidance you can provide from your experience with Prostate Cancer. We want a long-life together filled with good memories God willing.
I have a deep understanding of your concerns, which is why I still run this website despite having been diagnosed thirteen years ago – and not having had surgery or radiation. But it seems to me you and your husband are still somewhat in ‘panic’ mode because you have not been given sufficient information to make a rational decision.
Let me deal with some of the specific points in your mail:
1. You say Since his PSA went up enough for concern…. A single marginally elevated PSA of 4.5 ng/ml should not be a cause of concern. It is almost certainly not directly connected to or generated by prostate cancer – see PSA 101
2. You say My husband wanted the DaVinci RLP surgery as soon as possible which was scheduled for Dec 7 …… I assume Dec 7 was the earliest for the doctor. Most doctors like to have at least six weeks between biopsy and surgery to allow the damage from the biopsy to heal, so the date was probably connected to that time period.
3. You say His urologist does the DaVinci, but I am not sure how experienced Whatever you do, do NOT go ahead with RALP (Robotic Assisted Laparoscopic Prostatectomy) – Da Vinci – surgery until you know how many successful procedure the surgeon has done. There is a long learning curve for RALP and most people believe that the surgeon should have done 250 procedures as a minimum before they can be considered as experienced.
4. You say I had gotten my husband an appointment with John Hopkins head of robotic surgery on Dec 3 for 2nd opinion and consultation. That was a very wise thing to do and it is a pity that your husband cancelled the appointment. Apart from getting a good second opinion, you should also get a second opinion on the biopsy results from a pathologist recognized as an expert – see RECOGNISED EXPERT PATHOLOGISTS
5. You say …. I do not feel comfortable with his Doctor……and whether the doctor could do two RLP the same day. From what you have said, your discomfort is understandable and probably based on reality – he does not seem to be dealing with you and your husband in the way that you deserve at this worrying time. As Dr Phil might say – kick him to the curb and find someone who cares. Incidentally, many of the top surgeons do more than one procedure a day - some pride themsleves on how quickly they can get it done - you need to steer clear of them too.
6. You say My husband's urologist had also told him he could do 6 months of watchful waiting which my husband did not want to do. ….We are concerned that any delay will cause the cancer to spread. On this I would agree with the urologist. From what you have posted, your husband has what is termed an insignificant tumour, one that is unlikely to spread or to prove fatal. He seems an ideal candidate for the Active Surveillance program run at Johns Hopkins. I think Dr Carter is still running that and you might like to try to persuade your husband to see him – or whoever runs the program if it is not Dr Carter. There are a number of Active Surveillance studies around the world. The Canadian one reported recently that after ten years most of the men in the study show no sign of the cancer spreading and those who showed changes have been treated with similar outcomes to men who did not delay treatment. Read the stories on this site of men who chose to defer treatment and this article: ACTIVE SURVEILLANCE FOR FAVORABLE RISK PROSTATE CANCER: What Are The Results, and How Safe Is It? as well as the comments of Donna Pogliano PCa activist and author at OBJECTIFIED OBSERVATION
7. You say My mother passed Jan 26 from lung cancer…. I am very sorry to read that and send my condolences. No doubt her passing looms large in your minds but not all cancers are the same. Cancer activist John E. Holliday produced this CHART which demonstrates the relative dangers of various cancer. You will see Lung Cancer is #3: Prostate Cancer is # 37. But within the Prostate Cancer definition there are very aggressive forms and indolent forms with other types in between. The differences cannot be identified with 100% certainty, but from what you have posted and reported, your husband does not have the aggressive form and immediate action is not required or in his best interests.
8. You ask: If it is my husband's wish, do we
(a)stay with the new Dec 16 RLP surgery date, I think not
(b)get a second opinion from the other notable urology centers named above, Yes indeed – and see some QUESTIONS you should seek answers for
(c)or start anew Jan 1. By all means take a break over December – nothing will be lost and maybe some equilibrium gained
9. You say We want a long-life together filled with good memories God willing. The worst thing about my diagnosis (in 1996) was my wife’s reaction and our feeling that we would be parted in 3 – 6 months – because no one told us anything else. As I garnered more information I realised we might have 3 – 5 years – better, but still too short. That was 13 years ago. We’ve seen our son happily married with two of the best grandchildren in the world, we’ve done things that had been on our ‘bucket list’ for years, we’ve celebrated our 42nd wedding anniversary and feel fairly confident that we’ll celebrate our 50th (unless something else gets us before then!!) There is no reason why you shouldn’t have the same experience – at least as far as this PCa is concerned.
Good luck – keep talking – keep asking questions. It may be, after you have thoroughly examined all options and obtained the second opinions suggested above that he still feels that RALP is his best option then he should go ahead and not look back .
I second Terry's suggestion that you find out about the surgeon's experience with this procedure. I had a DaVinci performed by an inexperienced surgeon and he left half of the prostate behind. What you may not know is that any prostate surgery is a one-shot affair. They cannot go back in a second time or they will risk damaging the nerves that control erection, urination and bowel movements. These nerves are now buried in scar tissue so the surgeon cannot identify them. Your husband is in a fairly early stage. He can afford the time to check out the surgeon and consider all of the options. I regret rushing into surgery.
I agree with Paul A - do not rush this decision. At least take Christmas off from it and in the new year get your second (and even third!) opinions.
As you will see on Terry's other thread of today's date (about spontaneous remission etc.), I had a robotic with one of the UK's most experienced surgeons, but some of the gland was left behind. If you choose surgery make sure not only that the surgeon is VERY experienced but that he is experienced when there are set backs.
If your husband has had ANY previous surgery in the abdomen, quiz the surgeon as to how he plans to deal with that. By previous surgery I mean anything from bladder neck and TURP surgery through to hernia and appendix. I was told that scar tissue posed no serious problems. Well it can and it did for me. And it just has for Lord Andrew Lloyd Weber, the musician and impressario.
In my opinion, there is nothing in what you wrote about your husband's biopsy that shows any need for such a rush to surgery.
I also agree with waiting a bit. You do need to find out more information about your uro's experience. I was diagnosed in Oct of 2007, and had a sucessful DaVinci procedure in Jan. 2008. My surgeon had done over 500 procedures. I went in at 5:00 am and was his only patient that day.
You need to hear this one more time, you have no reason to rush to any treatment. Take some time to research what is the best treatment for him (and you), then find the best time for him (and you), and lastly, the best place/doctor to have it done. Even three months would likely not change how well he responds to treatment, but it will allow you all to feel comfortable in the long haul that you made the best decision for you. Just don't rush into something that you end up regretting later.
I wanted express my heartfelt gratitude to Terry, Paul, Ted, Lee and Thomas for taking the time to respond to my post. Your support and comforting guidance was a great relief. You lived up to what this website is all about....."You Are Not Alone". As a spouse, I have learned so much about Prostate Cancer. So much compassion to men facing this dreaded disease.
We are proceeding to a second opinion on December 14 with the Director of Urology at the University of Virginia, Dr. William Steers. He is renowned and one of the Top Doctors in Urology in Virginia. Their path lab will review his biopsy slides again. My husband's original slides were reviewed by Bostwick Labs in Richmond, VA. which is one of the labs recommended on this website.
My husband is wanting the RLP surgery to "get the cancer out" as soon as possible. I am trying to stay calm when anxiety is felt. I was very concerned when his urologist pre-emptied his surgery date without notifying him, had no record of his pre-op physical results furnished his office, and only 150 DaVinci RLP surgeries.
We are also proceeding with a local US TOO support meeting on December 8.
After 27 years of marriage as we have always done, we will provide love and positive support especially to my husband as he walks his road to cancer-free health.
My sincere thank you again,
Claudia L. Robert
PS As we proceed, I will encourage him to share his story on your website. As it would be good to return the support to others facing PC.
Claudia, you are right to be concerned about the doctor in question given what you say: "I was very concerned when his urologist pre-emptied his surgery date without notifying him, had no record of his pre-op physical results furnished his office, and only 150 DaVinci RLP surgeries."
You are both doing all the right things: taking your time, getting more opinions, and trying to stay calm and focused. I do think that unless you have a really very good reason to do so, you should not use a urologist who has only done 150 procedures. (See Paul A's experience).
As Terry has said, when you have made up your mind, whether that is intervention of whatever type, or Active Surveillance, go for it and put all doubts out of your mind.
You will both survive this as a couple. My wife and I have had to discover new ways to be together but we have done that and are closer now than ever.
Have a wonderful holiday and keep us all in touch.
I believe your husband will be fine escpecially with you by his side. I also just wanted the cancer out, but my dear CALM wife took over and made sure we had all of the facts. My uro actually set up consultations with a radiologist and other surgeons. My wife, (and this site) were my strengths through the entire process. January will be my second anniversary since the procedure and WE are doing better than ever!!!! Hang in there and stay calm.
Email if you need more info. lpullen@cox.net
I had similar diagnosis and was encouraged by every doctor and urologist I met to take some time (ranged from 2-4 months) to get second (and third) opinion, discuss things with my spouse, meet a few doctors, etc. And THEN decide what to do.
Should you go for surgergy its crucial that you carefully and thoughtfully evaluate the surgeons record. As noted here, robotic surgeons ideally have done over 300 procedures and do them regularly.
I ended up with the robotic prostatectomy in June 2009 (was diagnosed in January 2009). It was a very managable experience, and I am a good example of someone who comes out of the process in good shape (undetectable PSA, no incontinence, slowly regaining erections).
The fact that you are supporting your husband and working together on this is great and bodes well for happy life together, regardless of the course you chose.
