My Father has Prostate Cancer. Advice Appreciated !

Jen010407 · New User Joined: 25 Jun 2009 Posts: 4

Hello Everyone,

My Father was diagnosed with Prostate Cancer last week. 3 years ( to the month ) after my mother was diagnosed with Breast Cancer, now she is Breast Cancer Survior.

My Father was having weird sentations, doctor check his PSA. It came back 1.9, so cancer wasn't thought at first. Next my Father had ultrasound, which results stated Kidney Stones. My mother kept pushing him to see an Urologist. Which he agreed, Thankfully. The Urologist said the Prostate felt lumpy and said bioposy was needed. Two weeks later my Father's results were in. 7 out of 12 bioposied are cancer. I have to say I maybe 31 years old and still a complete Daddy's Girl, when he called me on the phone with his results .. I just fell on a chair and cried.

The Urologist told him his Prostate needs to come out, he said surgery. Though this doctor only does the Radial Retropublic Prostatectomy. With not knowing anything about Prostate, Prostate Cancer or Treatments, I started to research whatever I could on the interent. I immediately told him this surgery wasn't the best way to go. The next day, My mother was informed of the robotic assisted lapoaroscopic prostatectomy & cyberknife treatment.

I have found a video of a robotic assisted surgery and also information of cyberknife treatment. My father wants to know any pro's and con's on either. He feels cyberknife is too good to be true. He did have an appt with Cyberknife for information and he has an appt with different doctors for information regarding robotic assisted in July.

Here is his information:
Age: in July he'll be 54
Gleason: 6,7
Stage: T2
7 out of 12 biopsied are cancer
PSA: 1.9
CT Scan & Bone Scan: cancer has not spread

I really appreciate any information on treatment good or bad. My Father does not know which way to lean.
Thank You in advance.
Jennifer

johnT · Senior User Joined: 27 Apr 2009 Posts: 173

Jen,
I would have your dad see a prostate oncologist for a 2nd opinion. A Gleason 6 and 7 with so many cores should throw off a much higher psa than 1.7. Until I could reconcile this I would not choose a treatment option. A good prostate oncologist has the skills to do this, a urologist or surgeon doesn't. There is a standard formula as to gleason score, tumor volume and the amount of psa generated by the tumor.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

Hi Jennifer. Cheer up! This is not as frightening as it might seem at first.

Patrick Walsh, one of the top urologists in the world, has said that for a lot of me, prostate cancer is just a "bump in the road." It sounds like your father has an excellent chance of the cancer being localized. Localized prostate cancer is highly curable.

He probably has all treatment options open. Surgery, radiation (including Cyberknife, IMRT, IGRT, protons, seeds, or a combination of two), HIFU (a nonsurgical treatment available widely outside the U.S. and inside as part of ongoing clinical trials--"notme" will tell you more), etc.

Being diagnosed with prostate cancer is very common. Dying from it is not.

Prostate cancer is a turtle compared to some cancers. There is no need to rush to treatment--there's plenty of time to get over the shock of diagnosis, collect information, and make a calm decision.

I highly recommend Patrick Walsh's book, "Dr. Patrick Walsh's Guide to Surviving Prostate Cancer" (2007 ed.)

As far as Cyberknife sounding too good to be true--I don't know much about Cyberknife, but if it's like other modern, precise, external radiation technologies, cure rates are comparable to surgery, and side effects are generally mild and temporary--although it can very from case to case. The main advantage to radiation in my mind? It's not surgery. The treatments are very, very easy. The main disadvantage? To me, a big disadvantage is that if PSA rises after surgery, a man can have radiation. If PSA rises after radiation, surgery is a very tricky procedure and usually discouraged.

HIFU might be of interest to your father--it has shown promise especially in low to intermediate risk cases like his. He or you will probably have to research that apart from the information the urologist provides.

Protons might also be of interest. Men report very low rates of side effects from proton beam therapy. It's non-invasive, and appears to be comparable to surgery or traditional radiation in terms of controlling/curing cancer. It is not widely available, though, because of the massive investment in equipment and construction. The most famous proton center is at Loma Linda University Medical Center, but treatments are also done in Texas at MD Anderson, in Florida, and at Mass. General in Boston. There might be other places I don't know of.

In my mind, there's nothing wrong with robotic surgery, as long as your father understands his other options and fully understands the risks and benefits surgery presents. Surgery has long been the "gold standard" and many men are anxious to have the cancer physically removed. Once removed, it can be completely examined by a pathologist. This is a plus of surgery. A minus of surgery is that there is a strong chance of sexual dysfunction (impotence) afterwards. Probably not a comfortable subject for a daughter to consider, but this cancer affects us on an intimate level, unfortunately. For some men, the impotence is temporary or it can be alleviated through medication, but for some it presents a serious quality of life issue. Surgery also brings a considerable risk of urinary incontinence. This varies from man to man, but practically all of us who had the surgery had to wear pads for at least a while. In most cases, it's temporary, but in some men it persists and is a life-changing side effect.

All treatments--ALL treatments--have at least POTENTIAL side effects. The odds of incontinence, impotence, injury, etc. vary from treatment to treatment and of course each man's experience is unique. Even today's kinder and gentler radiation techniques can have side effects--a delayed, incremental form of impotence, for example, or proctitis (irritated rectum).

Don't worry yourself unduly over your father's diagnosis. It's a pretty common thing for men, and it's hardly a death sentence. Its a challenge, and hopefully no more than Walsh's "bump in the road." Most men who have localized prostate cancer get treated and go back to their usual lives.

Information will be your father's best ally at this point. If I were in his shoes, I would do some research, decide on a course of treatment, and choose an top doctor in that form of treatment. Then move forward and don't look back.

I wish you and your father the best.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

JohnT's got a good point. Besides the oncologist (a good idea) your father should consider having his biopsy samples sent to a leading lab for second opinion. Reading prostate biopsies is an art, and it's best to have a lab like Bostwick or Jonathan Epstein at Johns Hopkins University examine them, especially in a case like your father's, where, as JohnT notes, something seems a little off.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

Jen010407 · New User Joined: 25 Jun 2009 Posts: 4

Do you mind explaining "Gleason" to me? I understand the PSA, but not the Gleason.

I will talk to my father about an Oncologist. Also I will look up information on IMRT, IGRT & Protons. I thought I researched the interent well, but it seems as I haven't read everything yet.

I do have one more question. ED is this more a side effect for Surgery or Radiation? Or is every case different?

I would like to thank you guys so much for your help already. I really appreciate it.

Jennifer

johnw100

[quote="Jen010407"]Do you mind explaining "Gleason" to me? I understand the PSA, but not the Gleason.

I will talk to my father about an Oncologist.

I do have one more question. ED is this more a side effect for Surgery or Radiation? Or is every case different?

Jennifer[/quote]

Gleason: In simple terms, "Gleason" is a method invented to grade seriouness of the cancer. Biopsy readings are subjective, which is why, especially in your instance, it is good advice to have the slides sent for a reading by an expert pathologist as previously suggested.

Oncologist: again a very good suggestion.

ED: can well be a side effect of both surgery or radiation over time. Yes, every case is different, but the most important consideration is selection of your top doctor. eg the method of surgery should only be a secondary consideration.

Best wishes.

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

There's an explanation of Gleason here:
http://www.phoenix5.org/Infolink/GleasonGrading.html

and a good explanation in Walsh's book, among other places.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

johnT · Senior User Joined: 27 Apr 2009 Posts: 173

Jen,
A gleason 6 is a low grade cancer, gleason 7 is an intermediate grade, and anything higher than 8 is high grade agressive cancer.

PSA is generated by the prostate and also by the tumor. A gleason 6 tumor throws off .66 psa for every cc of tumor volume. High Gleason tumors throw off very little psa until they spread.

A psa of 1.9 is probably the amount thrown off by a normal prostate, depending on the size. Therefore the tumor seems to be not generating any psa, which is not normal. Some varients of pc have very low psa, this is why it is important to see an oncologist who can act as a detective and reconcile why the tumor is is not generating the amount of psa expected.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

Jen010407 · New User Joined: 25 Jun 2009 Posts: 4

Hello guys,

Before I posted, I was reading through this forum and saw alot on Gleason, that was why I asked my mother what my father's Gleason score was. Thanks for your help for me to understand it.

I was talking with my mother today, about what was mentioned on here about things not added up ... that the PSA's should be higher. She told me the PSA score of 1.9 was taken back in late of 08, not recently. Could this explain the low PSA score?

Now what doesn't make sense to me is the Urologist knows the PSA 1.9 and does know it was taken back in late of 08 ( I question my mother on this ). The Urologist did not want the PSA retaken. That I do not understand. Isn't the PSA score Important? This is all new to me, but I would think since PCa was found the doctor would want to retake the PSA. Am I wrong?

I do want my father to see an oncologist before any decisions are made. But with that said, so far I'm leaning more towards Robotic-Assisted Laparoscopic. I want his cancer out. My mother and sister-in-law are leaning more towards Cyberknife Radiation Treatment. My father hasn't made up his mind, and I'm not rushing him. I know he has time, we are still gathering information and looking into other opinions.
[b]Question though[/b]: I know with Radiation Treatment, PCa can return. But my question is, for prostatectomcy can Pca return in the surrounding tissue?

My father told his boss he will need time off from work due to Prostate Cancer ( this was last week when he only new of the Radicial Retropubic as his only opinion from the Urologist ), his boss didn't tell him "YOUR JOB IS SAFE AND ITS HERE WHEN YOU RETURN" .. His boss said " IF YOUR OUT OF WORK TO LONG I'LL HAVE TO HIRE SOMEONE ELSE". I understand of getting temporary help, but he has to give my dad back his job right?

Thanks again,
Jennifer

mkane09

Just because your father would have surgery, of any kind (or any other treatment, for that matter), does not guarantee that they would get "all" of the cancer. There are any number of us here who have had surgery and progressed to some type of secondary treatment for that very reason.

Regarding your Dad's job, no, his employer is under no obligation that I'm aware of to hold his job. Thankfully, my employers were sympathetic to my condition and granted me all the time I needed out of work, but they didn't have to. Personally, I think it's pretty lousy of your Dad's boss to put it that way, since your Dad has enough to worry about right now without having to worry about keeping his job.

mkane09
_________________
PSA 6.48, biopsy Gleason 3+4, robotic prostatectomy 9/17/08, pathology Gleason 4+5, pathologic stage T2c, positive margins, first post-op PSA 10-15-08 0.10; 2nd post-op PSA 0.18; SRT completed May 22, 2009. 1st post-radiation PSA, 8-4-09, <0.06.

Jen010407 · New User Joined: 25 Jun 2009 Posts: 4

For me to understand this .. even if the Cancer is localized in the Prostate, he can still end up having Radiation Treatment after surgery.

Regarding his Job, Yes, I'm annoyed with his boss for saying that to my father. Also he mentioned my dad, that his business partner told him ( my dad's boss ) to fire my dad because he is sick. Why tell my dad this, there was no reason to repeat it. Yes, I'm annoyed ! And Yes, he gave my dad more things to worry about.
If he does not have to keep my father's job, this might end up begin a deciding factor on my father's decision.

Thanks again !!

notme · Guest

Your father will only lose a day off work if he goes with HIFU.

But he must leave the country, go to Nassau or Mexico, it costs $25,000. an American doctor and his nurse, anethiesologist and ultrasound mechanic travel with him.

Yes, there are rare stories of problems with HIFU, but they are very rare. As with anything, the experience of the doctor is the most important factor.

It's ultrasound, so no pain, no cutting, no hormone drugs.

I had it done, I flew there, a 2 hour procedure, walk away, life as normal, fly home after two nights in a hotel. Dr. Scionti works on the weekends, so I was home on Tuesday.

The entire world has been treating men with ultrasound for prostate cancer for 5 to 18 years with incredible successful odds. We are lucky in that there are American doctors who will fly out of the country to treat men. If you are interested you can google HIFUCareCenter, or ask me anything.

johnT · Senior User Joined: 27 Apr 2009 Posts: 173

Jen,
Try to see a prostate oncologist for a 2nd opinion. If your dad really has a G6 with a low PSA and low number of cores he may not have to do anything, especially if his job is in danger. Active Survelience is a good option and some large studies indicate about 75% are still on it over 7 years with no progression. If the cancer does progress it can be caught quickly and any local cure can be used. In a very number of small cases the PC progresses beyound the cure window, about 1-2%, but it is felt that the PC was already matastized at diagonosis and no local cure would have helped. If psa doubling time is greater than 3 years there is an excellent chance that your dad can avoid treatment or at least delay it for a number of years with very little risk.
Go to the Prostate Cancer Research institute web site and search "Active Surveleince" and you will find a few published papers be some very noted doctors on it.
It is important to get another psa test as psa and it's rate of change over years is a main diagostic and predictor of PC.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

johnT · Senior User Joined: 27 Apr 2009 Posts: 173

Jen,
sorry,I reread your 1st post and with 7 positive cores , your dad is not a good candidate for Active Survelience.

With Surgery your dad may be out of work for several weeks or longer. Radiation could be an option as it takes about 20 min/day for a period of 9 weeks and you can still work while going through it.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

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