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Very upset, Father's prostate cancer, can anyone help?

emmaz
Posts: 6
Joined: Sep 2010

In 2001, my father was diagnosed with prostate cancer and was treated with
hormone therapy and radiation -- this brought his PSA to zero. Considered in
remission with never a mention of watching for a reoccurrence. In 2008, his PSA
spiked to .2. He was treated with hormone therapy again for 6 months which
brought his PSA down to .1.
He has been struggling with an insufferable body rash which has covered his
entire body for the past 14 months. After numerous doctor visits, consults and
biopsies, he is still without a cause or cure.
This past summer, he began to experience weakness in his back and legs and,
as a result, fell numerous times. He visited his internist who pronounced him
"fine" after a checkup and said he was "aging gracefully".
One day this summer he asked to be taken to the hospital due to extreme pain
in his back. ER did CT scan and diagnosed "possible cancer metastasized to
his spine".
He has received four differing opinions and diagnoses:
Medical Oncologist #1
• biopsy and pet scan
• showed the cancer was "undifferentiated", in two areas in the vertebrae,
with lymph node involvement in groin area
• recommended radiation to rid pain in two spots in spine. (After the
radiation a vague recommendation for chemo for lymph nodes but didn’t
think this would help with only a 10-30% chance of eradicating the lymph
node involvement.)
• Prognosis: 6 to 12 months' survival.
Radiation Oncologist #1
• gave opinion of para-aortic adenopathy in addition to the 2 spots in the
spine
• chance of 2-3 years' survival.
Radiation Oncologist #2
• disagreed with both of them and said that the lymph nodes in stomach
were affected in addition to the two spots in the spine (NOT in the groin
area)
• were told that radiation would follow for the lymph nodes in the abdomen
• now no mention or plan to radiate that area
Medical Oncologist #2
• is a colleague of medical oncologist #1
• concurred with her on treatment
• said the hormone treatment (Casodex and one shot per month of Lupron)
should take care of the lymph node involvement.
• will reassess in three months and said "maybe then we'll have to pull the
trigger" and then mumbled "chemo" (possibly realizing he had just made
a thoughtless comment)
We are completely confused and wonder why none of these doctors will put a
plan in place to treat the lymph nodes as we were told that they were of a very
aggressive nature and would spread.
BTW, my father just turned 87 yrs young and surely is not ready to die. We are
of the impression that his age is a factor as it has been mentioned many times
and not in a complimentary way. The first medical oncologist said that after all,
he has had nine years since he was first diagnosed.
We were never advised that it should be followed closely because of a chance of
reoccurrence. We had no inkling and are blaming ourselves for not realizing that
his symptoms suggested a return of his prostate cancer.
Does anyone have any suggestions as to what we can do if anything?
Are there any treatments that would help my Dad?

hopeful and opt...
Posts: 1292
Joined: Apr 2009

First, please do not blame yourself for his current condition....to me, your post shows that you love your father very much.

My mother is 92 and has recently been diagnosed with breat cancer , ....the tumor was removed....she is currently being monitored. Her decision now, is not to have any chemo or radiation if required since she elects quality of life, and does not want to deal with ill effects of treatment....Your father may or may not have a similar view....of course treatment or not is his decision.

I don't know about the caliber of the docs that your father is seeing, but I would look into if you already have not, seeing a medical oncologist at a major medical center that specializes in prostate cancer.

Sorry I am not knowledgeable to give specific treatment information.

Ira

emmaz
Posts: 6
Joined: Sep 2010

Ira,
Thank you for taking the time to reply to my post.My very best wishes go out to you and your mother at this difficult time.
We will be trying to find new doctors that may give us better advice and hope. Two of the oncologists originally mentioned are from a top cancer institute in Boston and we were solely disappointed by them.
Best of luck and thank you again.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I am in hospice care with terminal prostate cancer at age 59. The treatments that can help can be used if he wants to deal with the side effects, His life will not be extended by more than a few months, if that, but to some people it is worth it. If quality of life is more important then sign up for hospice care today. It is the best thing I ever did. Best of luck.

emmaz
Posts: 6
Joined: Sep 2010

Thank you for your reply and thoughts on hospice care.
My best wishes to you and your loved ones.

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

emmaz,

I am so sorry your father is suffering. Although you have had conflicting opinions from your doctors, a common thread seems to be that your father's prostate cancer has metastasized in several areas. In these types of cases where prostate cancer has progressed to an advanced stage (undifferentiated cells), and given your father's age, it is possible that there may not be any long term treatment that will change the eventual outcome. This type of cancer is not considered curable today.

Radiation treatment of the cancer in your father's spine will probably have a pallative effect of reducing the pain but is unlikely to curb the progression of the disease in other areas. Beyond radiation to treat the pain, I think your father should carefully consider whether or not the potential negative impact of chemotherapy or hormone treatment on his quality of life is worthwhile. A cancer healthy died might help slow the rate of progression of your father's cancer but at the stage he appears to be at present, it is unlikely to significantly impact his long term prognosis.

There is a new drug called Provenge that you may wish to consider as an alternative to chemotherapy and I would ask the doctors about whether or not it would be appropriate in your father's situation. When this drug was undergoing clinical studies it was shown to be able to extend the lifespan of men with advanced prostate cancer by several months, but like virtually any treatment of this disease, it has side effects as well.

Many doctors do not do well with patients they consider to be in a terminal phase of a disease like prostate cancer. The suggestion to investigate hospice care by one of the other posters was a good one and I would urge your family to look into that avenue as one alternative to continuing medical treatments that might only marginally extend your father's life but carries a whole host of side effects that would deteriorate his quality of life at the end.

Certainly no doctor can accurately predict survival time, they can only give general guesses based on their previous experience. A positive outlook here goes a long, long way.

With respect to the rash you described, I wonder if the doctors considered that he might be suffering from celiac disease, an autoimmune condition which is caused by intolerance to gluten in the diet. One symptom is very irrating rashes over the body. Going on a strict, gluten-free diet will relieve these symptoms. Gluten free means you don't eat bread, rye, and other grains. Celiac disease also affects the lymph nodes. Special blood tests are required to diagnose this condition. My father-in-law, now 85, recently developed this condition and it took some time to figure out the cause and the rash and itching were driving him crazy until they figured out what was causing it. There are now many gluten free products in the stores so preparing a proper diet is not so hard a chore as it used to be. I would encourage you to question his doctors about whether or not they have looked at celiac disease as a potential source of this rash.

Best of luck to you and your family during this difficult time.

emmaz
Posts: 6
Joined: Sep 2010

Thank you from the bottom of my heart. You are so kind to take the time and provide me with so much information. We did check out the celiac disease last year and my father does not have it. I am now looking into the Provenge and will try to schedule an appt with an oncologist at a different hospital that is providing this treatment. I worry that my father's age will be a problem but I will try anyway. To make matters worse my Dad suffers from bipolar illness which interferes with any quality of life for him and affects the rest of the family dramatically.But just being able to connect with caring people such as yourself gives much solace.
Thank you.

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

emmaz,

Good luck to you and please keep us posted on progress. I hope you have siblings that can share this burden with you as I know from caring for aging in-laws that it can be very much of an emotional and financial drain on your own life.

bdhilton
Posts: 755
Joined: Jan 2010

I feel for your concerns and my heart goes out to you…. Most of the guys here are in their late 40’s-mid 60’s. If your father is 87 yrs is has certainly lived a full life beyond the average… To most of us here to be diagnosed in their late 70’s with PCa would be a “blessing”…but everything is relative…If he were my father I would keep him comfortable and allow him to enjoy his remaining days… Best to you

emmaz
Posts: 6
Joined: Sep 2010

Unfortunately, your reply is what we have come across consistently in trying to get the best treatment for my Dad. The AGE issue.I do not care if you are 101, I believe in trying to live as long as possible. I feel for anyone going through this horror, forget the age.
But thank you for your concern.
Secondly, I would be remiss if I did not mention that my Dad's PSA was always negligible and is why we are now in this predicament. I saw one of your postings and hope that you will not rely on your PSA reading alone. Please be aware that this may not be an accurate marker but you probably have been told this by your Doctor, I hope. In my Father's case, his various doctors ignored his symptoms of bloody noses, weakness,falling, and a terrible body rash for almost a year.We(the family) are only just learning the hard way the trickiness of the disease and if we had only been told to watch for certain symptoms such as these and what they meant. Just a very unfortunate choice of doctors which we will always regret.

emmaz
Posts: 6
Joined: Sep 2010

To Bdhilton:
Unfortunately, your reply is what we have come across consistently in trying to get the best treatment for my Dad. The AGE issue.I do not care if you are 101, I believe in trying to live as long as possible. I feel for anyone going through this horror, forget the age.
But thank you for your concern.
Secondly, I would be remiss if I did not mention that my Dad's PSA was always negligible and is why we are now in this predicament. I saw one of your postings and hope that you will not rely on your PSA reading alone. Please be aware that this may not be an accurate marker but you probably have been told this by your Doctor, I hope. In my Father's case, his various doctors ignored his symptoms of bloody noses, weakness,falling, and a terrible body rash for almost a year.We(the family) are only just learning the hard way the trickiness of the disease and if we had only been told to watch for certain symptoms such as these and what they meant. Just a very unfortunate choice of doctors which we will always regret.

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

Emma,

I agree completely with your sentiments and realize it is a very frustrating experience when children find themselves in a role of advising aging parents or even making a decision for them with these life threatening diseases. Not only do you have to worry about your own health and family, but you have to learn a lot about diseases and conditions common to the aged. Prostate cancer is a particularly onerous disease in this respect and sometimes its symptoms of initial onset or recurrence can be masked by other conditions which complicates treatment decisions.

It's also difficult to for doctor's to deal with a "family" of an elderly patient. My wife and I are the decision makers and primary financial providers for her parents now (same age as your father) and we have found it useful to designate only a single individual to deal with doctors so that they only have to explain the options once and the person receiving the information has the advantage of knowing the complete condition and drug regimen of the elderly family member. Of course, older patients tend to collect many specialists so it can be a very time-consuming job, but sharing the burden of medical visits is something very difficult to delegate.

In any event, regardless of age, I believe every patient must be taken seriously, treated with respect, and made to approve and comprehend the treatment decisions that are being taken to the best ability that they can understand.

Best of luck to you and your family as you sort through these difficult issues.

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