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Worried about my dad

dadsgirl202
Posts: 3
Joined: Feb 2012

Hi! New to the board tonight but have been reading posts, and you all seem to be so helpful - bless you and thank you for that! Sorry in advance that this may be long. :)

My dad was diagnosed in late January, PSA 11.8. 3/12 cores positive, all less than 10% involvement, 2 Gleeson 3+3, the third 4+3. He had a full body bone scan, an transrectal ultrasound and a CT of abdomen and pelvis, and all came back clean. He was given a tumor stage of T1c.

Local urologist he was referred to for the biopsy recommended radation strictly because Dad is 73 - he's in very good health otherwise, no serious problems, just well controlled hypertension and arthritis. Urologist said that his life expectancy, at 73, is "only another 5-10 years anyway", and that it didn't warrant going for a cure, just treating it so something else would get him first. We don't agree with that, as he is the youngest child and all of his siblings are still living (oldest is 85) and none have serious health issues. Several of his aunts have lived independently into their mid-90's, so longevity does run in his family!

We researched online and found an excellent PC specialist in Michigan... went for a consult on 2/18. Dad really liked him, and he stated he felt Dad's chances for many years without recurrence were very good. He's done over 6000 robotic RP surgeries, with less than 1% of his patients dying from the PC in the 11 years he's been doing them. Dad's anxious, nervous, stressed out and feels that removing the prostate is his best chance for a cure, so we've scheduled the surgery for 3/6/12. He had pre-op testing (full blood panel, testosterone levels, metabolic panel, EKG, chest x-ray, and stress test) and all results were fine.

However, we found out on Monday, in the course of gathering medical records from his GP to send to the surgeon for pre-op review, that his GP did not tell him that his last PSA was in 2007 (he's believed all that time that it was being checked as part of his routine blood work every 6 months), and at that time his PSA was 4.0, meaning he should have been referred for biopsy at that point. Dad and I are both angry, considering possible legal action after he recovers from surgery, and worried sick that he could be more likely to already have microscopic spread if he's had the cancer all that time without any treatment.

And to top it all off, this afternoon he found a small hard lump just below the surface of the skin on his chest, about 2" below his collarbone. It's not painful, and it's about the size of a large pea, maybe a bit larger. He swears it was not there when he went for the chest x-ray and other tests last week. Of course, my first thought was that it's a lymph node met - but consciously, I realize that it could well be something else. I'm just freaked out about it, although I'm not saying anything about it to Dad. Are lymph nodes in the chest that close to the surface? Would a hard tumor in a lymph node show up on a chest x-ray?

Would appreciate any advise, suggestions, etc. that any of you may have. Dad and I are caregivers for my mom, who is disabled (and thankfully 5-1/2 years cancer-free after a hysterectomy for Stage 1 Uterine Cancer) and needs assistance 24/7, which makes the whole experience that much more stressful.

Thanks in advance!

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

Welcome to our forum and I'm sorry to read about the diagnosis for your father and your mothers health issues.

Any time a person receives the diagnosis of cancer it is a scary time and can play havoc with your emotions, fears and questions. I believe your father will be around for many years following his treatment.

First I'll comment on your thoughts on the missed biopsy when the PSA was 4.0. His Doctor should have followed up and retested PSA or ordered a Biopsy. I doubt though that legal action would go anywhere. PSA Does not mean cancer, its just a 'red flag' warning and physicians should follow up.

Also I'm not in the medical field so I can not accurately comment on the lymph node questions you have. I would encourage your dad to have it looked at and it is most likely some other issue that is not related to his prostate cancer.

Best wishes to a speedy recovery for your father.

lewvino

Swingshiftworker
Posts: 658
Joined: Mar 2010

It's unfortunate that prior testing did not reveal it, but your father apparently still has a relatively low grade form of prostate cancer (PCa) that does not require immediate action that is amenable to treatment by radiation (or even active surveillence) without the risks of surgery.

However, you and he seem convinced that surgery is the best course of treatment despite medical advice to the contrary. Are you and he fully aware of the risks of surgery? In order to fully comprehend the risks of surgery, I suggest you read the following article:

http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects.

IHMO, surgery is by far the riskiest treatment for PCa and, as the article makes clear, it is not always recommended as the course of treatment in the best interests of the patient. At a minimum, there are the general risks of surgery -- infection and other complications caused by cutting into the body -- which, at your father's age, should definitely not be ignored.

Then there are the quality of life issues, such as ED and incontinence. At your father's age, ED may not be a concern but, then again, there are many men (even at your father's age) who still have an active sex life that could be eliminated or substantially diminished following surgery, which not only affects him but also his wife. When the nerve bundles adjoining the prostate are damaged or removed (as they are often are) during surgery, sex is no longer an option. So, if that is important to your father (and mother), you best make him aware of this risk.

Your father also needs to consider if he is willing to risk having to live w/the embarrassment and inconvenience of incontinence following surgery for another 15-20 years, if in fact he actually expects to live that long. Many men come through PCa surgery w/o any such problems, but many other many have to live with constant urinary leakage following surgery requiring, at a minimum, the need to wear diapers (which smell noticeably and require constant changing) and, at the worst, requires further surgery and the implantation of an AUS (artificial urinary sphincter).

BTW, when surgery FAILS, as if often does, the recourse is only radiation (usually IMRT coupled w/hormone treatment).

In contrast, there have been significant improvements in radiation treatment of PCa in recent years and the probability for successful treatment of PCa is now equal to that by surgery WITHOUT most of the risks of surgery. Most notably, CyberKnife and Proton Beam Surgery offer a method of treating low grade cancers with a high degree of precision that kills off the cancer cells w/o significantly damaging nearby tissue which results in a very low incidence of ED and incontinence, much lower than with surgery and without the need to cut into the body.

If you are not aware of these and other methods of radiation treatment, I suggest you research them as an alternative to surgery BEFORE you risk your father's life and well being on surgery, which IMHO is an archaic technique which presents unnecessary risks which are not justified given the availability of equally effective radiation treatments.

Lastly if in fact, the cancer is more serious than presently indicated and, if in fact, the cancer has already spread beyond the prostate, then that is even more reason to opt for radiation over surgery, because removal of the prostate will no longer prevent the cancer from spreading, which is the "logical" (albeit specious) argument for surgery, in the first place.

That said, whatever method of treatment you choose, I wish your father the best.

Good luck!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

dadsgirl,

Let me add my welcome to the forum. You’ve come to a good place to start your research into prostate cancer and I hope you encourage your father to join as well so that he can have the opportunity to interact directly with men who have faced or are facing similar situations.
As Larry pointed out, any diagnosis of cancer can be a very emotionally unsettling event and it is perfectly normal to feel anxious at this stage. The best way to handle it is to educate yourself on the different treatments and potential side effects of those treatments so that you can intelligently assess what the different doctors will tell you.

As Swingshiftworker points out, surgery poses a number of potentially devastating issues for your father. Most urologists do not recommend surgery for men over 70 for a number of reasons. It is major surgery, after all, and even though you and your father feel he is in good health there are lots of complications associated with surgery that can impact the recovery of older patients. There are also the unique side effects of prostate surgery for older men that involve urinary incontinence and ED. While these can occur to a man undergoing RP at any age, older men may be particularly vulnerable.

Several studies have shown that for a relatively low level diagnosis such as your father’s, that surgery, radiation, and active surveillance all have pretty much the same long term effectiveness. Why risk debilitating side effects associated with surgery when radiation is likely to be equally as effective. I think you should also consider active surveillance and consult with an oncologist who specializes in this protocol.

I think that the surgeon who has done 6,000 procedures has given your father bad advice. “Cure” is a relative term with cancers such as prostate cancer which are inherently metastatic. The real benefit of early treatment is that it delays (or prevents) the onset of advanced stages of prostate cancer until you eventually end up passing on from some other ailment. The number one cause of death for men with prostate cancer is heart disease not cancer. Besides, I think you and your father will both want a medical team that is going to be there for you in the long term. A surgeon who has done 6,000 operations (this robotic procedure was only approved in 2005) is basically running a prostate removal factory. Should your father experience adverse side effects you are going to be fobbed off onto another specialist who had nothing to do with the surgery decision.

The other thing about prostate cancer that you and your father need to understand is that it is very common in men who live in the United States and other Western nations. Studies have been done where men who died of something other than prostate cancer were autopsied and they discovered that about 50% of men in their 50s, 60% of men in their 60s, 70% of men in their 70s and so forth have some amount of prostate cancer that was undetected at time of death. Prostate cancer is also extremely slow growing. The natural histology of prostate cancer is about 55 years from onset to (untreated) death. This means that your father likely has had this for several years and it has only just now become detectable. The very slow progression of prostate cancer is one of the characteristics that enable any of several treatment protocols to be effective.

Regarding that lone PSA score of 4.0 a few years ago; I can understand how given your relative newness to this game that this would be upsetting. The fact is that the PSA test alone is a notoriously poor tool in predicting prostate cancer. The likelihood that a single PSA test for an otherwise healthy man can detect prostate cancer is 50%--the same as flipping a coin—and meaningless statistically. PSA in conjunction with physical systems, a history that calculates PSA doubling time, PSA density, and PSA velocity is more helpful but still shaky. This is why several government studies have encouraged doing away with the PSA test altogether for healthy men and particularly for older men the age of your father. This is a controversial subject on this forum but I think you get the picture.

The reason PSA testing is so inaccurate is that there are so many non cancerous possibilities that can make it go up or down. PSA tends to increase naturally with age and a PSA of 4.0 for a man in his 70s is nothing many, many doctors would see as a warning sign. PSA scores between 4.0 and 10 are most often caused by BPH which is the natural swelling of the prostate that happens to men as they age. The swelling is caused by the growth of benign fibrous material inside the prostate which tends to push out PSA into the bloodstream. It can also result in common urinary symptoms in men as they age that include frequent urination, reduced pressure in the urine stream, start/stopping and other similar symptoms. This is why so many older men are prescribed Flomax to ease these symptoms. An orgasm within 48 hours of a PSA test can cause the level to spike. Exercise or anything that puts pressure on the prostate (such as bike riding or even a hard stool) can elevate PSA. Certain medications that treat cholesterol can cause PSA to elevate and even OTC drugs like Advil can cause PSA to increase. PSA has also been shown to vary at different times of the day. In other words…PSA alone is a lousy predictor of prostate cancer.

You can probably find some lawyer to take a case in malpractice but I seriously doubt you would prevail. Frankly, I think you’re making too much of nothing.
I hope that your father takes a deep breath, slows down, and assesses his condition with a cold, rational eye. His priorities should be on the quality of life he wants after treatment and the efficiency of his treatment. There is no need to rush into anything and I hope that you consult with several specialists including radiologists and oncologists who will offer different “expert” opinions than the surgeon who promised you a cure.

Best of luck to you.

K

VascodaGama's picture
VascodaGama
Posts: 1598
Joined: Nov 2010

Dadsgirl

I am sorry for the diagnosis of your father. We all are worried when confronted with cancer but by now you may have figured out that there are many ways to treat it.
Prostate cancer (PCa) is a slow growing type and such characteristics allow us time enough to study it, evaluate its advancement and choose the best treatment to fight it, but one must be continuously vigilant.

The events you have described are facts that your dad should check for veracity, however I would not think that such lump in the chest is related to PCa in a patient with Gleason score of 7 (4+3). PCa usually spreads to bone at the hip where it makes a colony but the image studies and tests have revealed nothing there.

Nevertheless, I am surprised that you have not mentioned about the two important tests related to PCa which are the PSA and DRE. These tests should be leading your dad initially to the biopsy and their results would be influencing the decision on the treatment. 73 years old and “good health” are not prohibitive for surgery of prostate cancer. However, a high PSA or positive DRE could well indicate that radiotherapy may have been a better choice to care for your dad’s status.

I hope that your doctor gives you a satisfactory answer in regards to the lump. I also would look for information regarding the side effects caused by the treatment. Not everybody experience them but incontinence and ED are typical and your dad should be mentally prepared for that.

A book I recommend you to read is ; A “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition June 2007); which may help you understanding what surgery is about and how to care for the side effects.

Be positive and confident because your dad will bit the bandit and live to the age of his siblings.

The best for you both.

VGama

hopeful and opt...
Posts: 1364
Joined: Apr 2009

First, it is very, very very important to get a second opinion of the pathology from your fathers biopsy so that he will not be over or under treated.,,,there are a few experts in the USA who are qualified.

4+3=7 gleason an aggressive cancer, so active surveillance is not appropriate for a man who expects to live for a while.

In my opinion, vascos request to share other information about your fathers case is appropriate.

There are various active treatment options available to include, surgery, radiation,HDR , hormone, or a combination............in my opinion all of these are appropriate. The choice depends on the priorities of your father.

The main thing make sure that whatever method you choice, the person doing it is an expert...you only get one chance.

Old-timer's picture
Old-timer
Posts: 134
Joined: Apr 2011

For what it's worth, I offer these comments. Your dad's life expectancy is much higher than 5 to 10 years. According to the IRS table, that's about what mine is, and I am 85. Shame on that doctor; he's just looking for a "paying customer."

At age 85, and I believe at 73 as well, quality of life is more important than number of years remaining. Your dad should consider this. Whether he goes through surgery or radiiation, his life will not likely be as good as it is now. First, he will need to recover from the surgery or radiation itself. After recovery, there is a high risk that he will experience ED, or incontinence, or both. Add to that the thought that the treatment may not extend his life much if any.

The surgeon you mention is probably a good one. Obviously, he is proud of his successes.
But he doesn't have to live in a body that has gone through that surgery. I think your dad would be smart to look more carefully at what he is facing and get opinions from additional sources.

I chose surgery at the age of 65. Would I do it again knowing what I do now? Yes, I think so. Would I at age 85? NO. Would I at age 73? Frankly, I do not know. And I do not choose to tell your dad what he should do. Just want to give him more information to consider.

Hope this is useful information. Good luck to both your dad and you.

Jerry

dadsgirl202
Posts: 3
Joined: Feb 2012

Hi everyone, sorry for disappearing - but I developed a nasty eye infection and my vision has been too blurry to be online. :(

In response to the request for more info regarding his PSA and DRE - the DRE showed enlargement of the prostate but no palpable lumps/nodules. His PSA in 2006 was 3.9, in 2007 it was 4.0 and in December it was 11.8, which FINALLY triggered a referral to a urologist. Everything I've found online has said that the 3.9 and/or 4/0 results should have triggered, at the very least, a repeat test if not a referral - and that's what we're upset about. The doctor told him that everything was fine, and didn't even repeat the test until Dad specifically requested it and insisted on it.

To his credit, the surgeon Dad chose also told him his outcome would probably be about the same if he opted for radiation. Dad did not want to go for 8-10 weeks of daily treatment, and he also has spinal stenosis, which makes it very painful for him to lay flat on his back for the radiation treatments (especially that many!). This surgeon has published his results numerous times, with excellent outcomes and low side effects. Dad told the doctor that ED was not a problem for him, and that he could live with the 5-10% possibility (according to this doctor's stats) of stress and/or urge incontinence.

Dad is the one who wants the surgery - he says that mentally, he just wants to know that the source of the cancer is physically gone. Old-timer, if I am not being too personal, may I ask if you had incontinence problems post-surgery? This doctor removes the Foley at 7-10 days, and says that 50% of his patients never have so much as a dribble afterwards, with less than 5% having any long-term problems, with the vast majority of them stress incontinence. The radiation oncologist he saw locally told him side effects included better than 30% chance of fecal incontinence, chronic diarrhea, and/or rectal bleeding, in addition to the same incontinence/ED risks as the surgery. Dad says he'd rather have pee problems than poop issues.

His GP was (as usual) not available, and my opthalmologist (who also treats Dad) suggested he contact his dermatologist. He got an appointment the same day, and she feels strongly that the lump is NOT in a lymph node. She says it's some sort of cyst, and he has an appointment mid-March to have it removed and biopsied just to be safe.

We are set to leave tomorrow, as his surgery is scheduled for Tuesday - will update this post as needed. If any of you who have been through the robotic and/or laparascopic surgery have any tips/suggestions for post-surgery, we'd love to hear them. We're staying in a hotel for a few days afterwards and I should have wi-fi. :)

Thanks!!!
Brenda

Beau2
Posts: 246
Joined: Sep 2010

Hey Brenda,

As far as pre-surgery tips/suggestions go, here's a link to a list called, "Things I Wish I'd Known Before Surgery. etc.". It covers just about everything .... much more than you'll need.

Best wishes.

http://www.healingwell.com/community/default.aspx?f=35&m=1717641

dadsgirl202
Posts: 3
Joined: Feb 2012

Thank you - I bookmarked it on the laptop we're taking with us so Dad can read it in the car. :)

Brenda

Old-timer's picture
Old-timer
Posts: 134
Joined: Apr 2011

Regarding incontinence after surgery, I was almost totally dry during the 14 years between surgery and radiation. Not more than one thin pad a day was the norm during those years. The incontinence problem began during radiation treatments and intensified gradually for the next few years. It is my understanding that I have scar tissue on my urethra where it leaves the bladder. Thankfully, I do not drip while in bed or when sitting. One of my urologists wants to fix the scar tissue and then install the AUS 800. Partly because of my age, I have rejected that recommendation. Enough on this. Let me assure you that I am OK with it. Life is great!

Throughout my pc journey, the poop situation has been and continues to be perfect. Zero iregularities. With no ensure or stool softerners. I do make sure I eat foods with adequate fibers.

I understand your dad for wanting to get the cancer out. That was my thinking way back then. I would choose that treatment again.

I wish both of you success.

Jerry

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