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Test results in for father

Ace44's picture
Ace44
Posts: 47
Joined: Sep 2015

My dad received the results of his Bone Scan and CT. Both of which should NED. We are curious about the rising PSA levels and wonder of they could have been elevated for a different reason than recurrence of cancer. I was also able to find out a little more about the original path reports.

PSA prior to surgery was 18. Gleason score was 8. They staged him at T3B and considered the cancer aggressive. The Urologist never discussed radiation at the time even though they consider his cancer aggressive. We are still scratching our heads at the one but I guess there is no sense if trying to figure out the past.

His follow up PSA levels we 0 the first year, 0 the second, 1.6 the third and then finally this 8.8. We are also wondering why nothing was checked out after the 1.6 level.

It is also possible that he has a genetic mutution (ATM mutution) which is the same one I have that they believe caused my cancer. He is getting checked for that as well but they don't think it should affect any treatment he might need (ATM mutution is sensitive to radiation).

We meet with the radiologist again next week to discuss what's next. I want to thank Bob, VG , Hopeful and Will for your response to my intial inquiry and all of the wonderful questions to ask. I feel very informed and empowered when I went in and found that I was truly prepared for the meeting.

Wishing you all peace and good health-April

 

Old Salt
Posts: 720
Joined: Aug 2014

Do you know whether any seminal vesicles or lymph nodes were removed or inspected during the surgery? And if so, were they cancerous? I believe that this info will be relevant to the radiologist.

Hopefully, the radiologist will recommend a sound path forward. It is likely to include radiation of tissues surrounding the prostate. Hormone therapy, possibly combined with chemo (taxotere) is not unlikely either.

Finally, it's water over the dam, but I would find another urologist!

Ace44's picture
Ace44
Posts: 47
Joined: Sep 2015

Yes we are definitely finding a new urologist. That was immediately agreed upon. I'm not sure about the seminal vesicles. I am having my dad get the path reports from the urologist since he doesn' have them and the radiologist couldn't give them to us b/c of HIPAA.

Thanks for your response!

VascodaGama's picture
VascodaGama
Posts: 2933
Joined: Nov 2010

April,

For those reading your story (father's case), your initial thread is here; https://csn.cancer.org/node/303365

I think it better for you to keep things together so that members can understand your case and help you with better opinions.

I absolutely agree that you should look for another physician to assist your dad in treating the recurrence. I do not know how much you can trust his previous urologist but your dad now needs more the experience of a radiologist and medical oncologist than an urologist. The surgery of 5 years ago was bound to fail from the begining. The stage T3b signifies that the cancer was not contained (extra capsular extenssions exists) and the seminal vesicles were positive with cancer, turning a Gleason 8 grade into a very aggressive case. The initial increased PSA of 1.6 ng/ml was indicative of recurrence. These data will be used to decide which salvage protocol is better to treat the recurrence.

My opinion would be to go through a combination therapy as commented by Old Salt above. However I would recommend your dad to start with an image exam such as FCH18 PET/CT to find the extent of the spread. The pre op CT and bone scan will be used to compare images. I recommend you to discuss the matter with his newer physician.

You do not have to rush to a decision. Just take notes and get second opinions from another doctor.

Best wishes,

VG

Ace44's picture
Ace44
Posts: 47
Joined: Sep 2015

Met with the radiation onc today to discuss results from CT and bone scan. Right before we stepped into that appointment the genetics people called and said that he had tested positive for the ATM gene mutation (same one they think caused my cancer). There are some studies that associate the risk of a second cancer in one of the surrounding areas being higher if a person has ATM gene mutuation and undergoes radiation. The rad onc suggested maybe holding off on the radiation treatments for now and starting on HT. We are meeting with a medical onc to discuss. Have you ever heard anything about this gene? There isn't much out there regarding it other than it's rare (less than 1% of the population has it) and it can be sensitive to radiation.

Old Salt
Posts: 720
Joined: Aug 2014

I googled the ATM gene. A trustworthy site stated that mutations in the ATM gene are associated with a higher risk for breast and pancreatic cancers. The NIH site states that the relationship to pancreatic cancer is controversial.

https://ghr.nlm.nih.gov/gene/ATM#conditions

There are some very recent papers (try http://www.ncbi.nlm.nih.gov/pubmed/?term=atm+gene+mutations+AND+prostate+cancer) that examined the genetics of castrate-resistant metastasized prostate cancers. Mutated ATM genes are found in some of these.

Do you know whether your Dad has one or two copies of the mutated ATM gene? And has he been very sensitive to sunshine?

 

PS: Your Dad's doctors are probably reading up on ATM gene mutations (like I did); as you stated, it's not common (which is a good thing).

Ace44's picture
Ace44
Posts: 47
Joined: Sep 2015

He only has one copy of the mutuated ATM gene. (Ifyou have two mutated copies you have what's called ataxia telangiectisia and according to my geneticist you would be diagnosed with that between the ages of 4-6 and most don't live past their 20's).  I'm not sure how much research he has done or will do. I did quite a bit when I learned that I have it but again there is so little known it's not much to go on. Neither my oncologist nor my surgeon were that familiar with it either. His radioogy onc seemed to at least have heard of it and was very glad that I had brought it up b/c it did change his advice on treatment. I wouldn't say he is senstive to sunlight but he is a little fair skinned.

VascodaGama's picture
VascodaGama
Posts: 2933
Joined: Nov 2010

April,

I cannot opinion against your oncologist’s suggestion to withhold the radiation treatment. This is something your dad must decide. Surely ATM will act to any call due to DNA damage to guard cell’s survival, however it works in both ways; If the cells cycle (survival) is put into jeopardy it “switch on” the proteins that repair the DNA, or it “switch on” the proteins that lead to apoptosis.
In other words, in benign cells it works to improve survival and in cancerous cells it forces the death of the cell.

In fact this is the “principle” of the radiation treatment (and of some chemotherapy) to damage the DNA of tissues falling within the target of the rays (or cells of short life cycle=fast duplication), killing the bad ones and leading to survival of the good ones. The problem with this “modeling” is if cell’s cycle is arrested (strands are connected/held by ATM) and the genes are modified causing cancer (cells that never switch off) and that wouldn’t be recognized by the “guardians”. The newly formed ones would be called secondary cancer the existing ones would be recurrence from failed treatment. However, the process is not only favorable to those guys positive to ATM gene mutations. The animal Kingdome has fantastic interweaved systems for survival still under investigation. Meanwhile one should follow what is known and available for treating their cases, would that be prime or secondary cancers.

A plus from the genetic tests done by your father is to check the probabilities that his type of cancer has in responding to hormonal therapies. He can verify which medicines would not work well for him.

I like the way you are following your dad’s case. Just wonderful.

Best wishes,

VGama

 

Ace44's picture
Ace44
Posts: 47
Joined: Sep 2015

Hello Friends,

We have an appointment to meet with a medical onc in a couple of weeks. I however, have my own tests that day and cannot attend this consult. My sister has agreed to go and ask questions for me. What do we need to be asking regarding the HT besides side effects which I can read online? Anything specific would be great. My sister is nervous about me not being there and I want to make it easy for her to ask what I need to know...I just need to help me understand what I need to know.

Thanks again for the support.

April 

Old Salt
Posts: 720
Joined: Aug 2014

Because there have been no responses up to now, I will give it 'a shot'.

Ask whether casodex (bicalutamide) will be first; that's to prevent an initial testosterone flare if a GnRH analog (like Lupron) will be used for hormone therapy (HT). And for how long?

But there are drugs other than Lupron that are used for HT; for instance, degarelix (Firmagon). The latter is a GnRH receptor antagonist.

I am more familiar with Lupron; it can be administered as a 1-month, 3-month or 6-month shot. My urologist did a 1-month shot first to see how I would react. I think that was a sound decision.

Lupron and the other HT drugs (Firmagon) can be administered in various ways. Ask how it will be done. I got my Lupron injections in a thigh muscle. Firmagon is injected into the abdomen.

How long for the HT?

 Ask about cost. Lupron is quite expensive, but I read somewhere that it is now available as a generic. Also ask about insurance coverage (unless you are one of the Trumps). Generally speaking, getting such a drug in a doctor's office is less expensive than getting it in a hospital setting.

 Hopefully, this initial list will lead to further input.

VascodaGama's picture
VascodaGama
Posts: 2933
Joined: Nov 2010

Hi,

You have not shared yet the type/modality of the treatment you have chosen. Has your dad decided to have the combination therapy of hormones plus radiation? Is this hormonal administration adjuvant to a later radiation attack or just as the solo therapy to control the recurrence?

If the intent of HT is to gain control on the advancement of the cancer (as a palliative therapy), therefore administered solo, then you would like to know details on the suggested protocol (mono blockade of LHRH agonist or double with an antiandrogen or tripple adding an 5-ARI) because it will be used for the many years ahead till your dad becomes refractory. In such a case one should inquire on possibilities of having an intermittent modality (on and off drugs periods). Famous oncologists like Myers recommend this therapy regulating the on/off switch with the levels of the PSA and testosterone. They would keep the patient under the effect of the drugs for a whole year in remission (PSA<0.05 ng/ml). Typically this is accomplished with three injections of 6-month Lupron shots, representing 18 months period. Then the treatment stops (depending on patient status) allowing free increase of the PSA and it will be restarted when this marker reaches a certain level (in my case Gs6 this threshold is 2.5 ng/ml).
If HT is part of a combination (HT + RT) then your dad will start the LHRH agonist after two weeks of an antiandrogen followed two months later by the radiation therapy, and continue the LHRH agonist during a period that could last 6 or more months. 

You could prepare a list of questions based on the above. For more details about the hormonal treatment, I would recommend you to get a copy of Myer's book;  "Beating Prostate Cancer: Hormonal Therapy & Diet", by Dr. Charles “Snuffy” Myers (Amazon sold used copies for just $2).

Best wishes,

VG

Ace44's picture
Ace44
Posts: 47
Joined: Sep 2015

Thank you for your responses. He has not decided on his course of treatment yet. The radiology oncologist has suggested that he does HT and no radiation at this time because of the higher than normal risk of a radiation related cancer possible due to the radiation sensitive ATM gene mutation. Since they cannot see any cancer aside from the elevated PSA levels, he said he was worried that radiation would do more harm than good at this point. He is the one that suggested that we meet with the medical onc regarding HT.

VG and Old Salt you both gave me some things to think about and add to my question list. I will check out that book as well as I have already been starting to look into different dietary items that might help.

April

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