Husband Newly Diagnosed

in my humble opinion...slow down and make sure you have ALL of the info. before you make any ‘no turn back’ decision.  There can be many things that cause PSA to go nuts.  Sometimes a hammer thinks everything is a nail, and sometimes even the best MD’s see only what they expect.  

You are 48 hours away from your medical meeting.  Please listen, learn but then say, “Thank you, we’ll get back to you with our decision.” This disease is not like an enlarged aorta, inflamed appendix, bleeding ulcer, etc.  

This one needs your having the best information and time to make a decision.  Again IMHO.

I am sorry for your husbands diagnosis.

A bone scan is recommended by the American Urological Association for men with Gleason 8 and above.

With the extensive Gleason 10 found there is extracapsular extension, that is, the cancer has escaped the capsule. A full body PET scan is required to determine where the cancer is...there are various PET scans available...some investigational ones are better than others. 

Your husband will have to have hormone therapy.....a Medical Oncologist is the doctor who is best qualified to administer these drugs, and needs to be the leader of your medical  team....you want the very very best that you can afford and find.

In Marina Del Rey, CA there is a group of medcal oncologists that specialize only in prostate cancer, Prostate Oncology Specialists with Drs Scholz, Turner and Lam  and are world known. I don't know what your coverage is, or what medical onologists are available in your area, but, they are the best. This would be drive for you, but worthwhile

https://www.google.com/search?authuser=0&source=hp&ei=IV07WrSeMIeD0wLBzqiQCw&q=dr+mark+scholz+marina+del+rey&oq=sholtz+marina+del+&gs_l=psy-ab.1.0.0i13i5i30k1l2.2930.22204.0.25312.29.26.2.0.0.0.118.2518.12j13.26.0....0...1.1.64.psy-ab..1.28.2650.6..0j35i39k1j0i131k1j0i20i264k1j0i131i20i264k1j0i10k1j0i10i46k1j46i10k1j0i22i10i30k1j0i22i30k1j0i13k1j0i13i10k1j0i13i30k1j0i13i5i10i30k1j0i8i13i30k1j33i22i29i30k1.131.HuEKaUvdqNc

https://www.prostateoncology.com/

VascoDaGama is the expert at this forum about aggressive diesease and hopefully he will respond again to this thread.

Fullmoon,

Please take Max’s advices in your questions above. However, in regards to the low testosterone, you are touching a subject that has been discussed for many years by researchers/doctors, on its influence in the initiation and progression of PCa. I have been following those studies since 2005 (after RP failure) when searching for my next step and become curious on the matter,but as of today no conclusive answer has been ascertain. In any case, it is true that a greater number of patients with high Gleason rates were found to have low levels of circulating testosterone and that these cohort of patients are prone to earlier refractory of hormonal therapies.
Your husband’s doctors will not reply about this inquire unless they are researchers or involved in investigations. If interested, you should do some researches on the matter in regards to the influence of endogenous and exogenous testosterone in PCa matters.

In such regards, if your husband’s future treatment involves hormonal therapy (ADT) with the traditional LHRH shot (Lupron, etc) then he should take into consideration any small variation of T in the serum. He needs a starting value (from a test done before any treatment) to compare with the test-values along the treatment.
Never the less, ADT can be done with other drugs acting differently such as Casodex or Xtandi (antiandrogens), Zytiga or Ketokonazole (CYP17A1 inhibitors) that avoid the manufacture of androgens from cholesterol.

In these forums I have read many reporting to have aggressive PCa cases but with low levels of PSA. This is typical in high grades of Gleason patterns that are so much differentiated that do not act as a normal cell producing much PSA serum. Surely this seems not to be the case of your husband. He has a high PSA level which makes me think that his cancer is aggressive but treatable. ADT may be effective.

Just as a conclusive note on the above subject, I want to say that in recent investigations there have been culminating findings in regards to the genes that are involved in sustaining life. In other words the little baggers that, forcibly try reviving cells that have been damaged or prone to die by unnatural processes (radiation, chemo, etc). This is thought to be the reason behind Darwin theory on the survival (and adaptation) of the species. Our cells (benign and cancerous) got these switches providing the means for survivorship. Prostatic cells live of androgens (testosterone) so that, when these are lacking the cells will find ways to get the testosterone, even starting to produce the stuff by themselves. This is the condition we name refractory in ADT.

I still reinforce the opinion that your husband should do the tests/exams I listed in my above post. His bone health may be in jeopardy without knowing. ADT will deteriorate bone which in many PCa cases require adding a bisphosphanate (Fosamax, Prolia, etc) to the therapy.

Best wishes,

VGama

fullmoon50 said:

Scans Scheduled

Hello, all. We managed to enjoy our holiday even with the recent PCa diagnosis. The CT abdominal scan and the PET bone scan are scheduled for January 5th. The follow up appointment for results is scheduled January 11th with the urologist. We will leave there with a disc of scans. It’s a step at a time. My hope is that my spouse will make any treatment decisions after consult with the Moores Cancer Center at UC-San Diego. He is not convinced yet that it’s necessary to travel there as it’s south from home and even further south from work. 

That brings me to the question of what my role is. What did you find helpful from your support system? What was annoying or not helpful? I am usually the one who does the research and footwork on various issues. However, it seems important from all I’ve read on this board that he own his diagnosis, be informed, and advocate for himself. He needs to make the treatment choice, if in fact he gets a choice. How do I support him? Thank you all again for your sharing of experience.

fullmoon I had two completely differing cancers within five years of each other.  The whole process was harder for my wife than for me.  I do not think I would have got through it without her, but I was bedridden for many months with the first cancer, and needed nearly a year to recover from the treatment.  

Do as much as he is comfortable with.  Going to his appointments with him and taking notes is very valuable.  And keep paper copies of EVERY test result. Start a loose leaf notebook.  What you or he remembers next week you will not remember next year.

And know that the level of assistance that he needs may VARY:  Little tomorrow, more next month. Adjust as necessary.  Any person who is an adult of sound mind must make their own treatment choices, but do give feedback, and listen to why he thinks his decisions are best for him.  

max

Telling friends and family members about a cancer diagnosis is difficult, particularly when you are still selecting what to do.  I waited several months and then only told my kids, my brother and one other relative because I'm on active surveillance.  I have not told any friends or other relatives.  I will do so if I need treatment.  I will likely never tell my 89 and 90 year old in-laws unless I decide on surgery, which we'd have to tell them about, I suppose.  I see no reason to worry them when I'm not being treated.  I'd recommend patience with the "disclosure" issue.  There's a lot going on, and how, when and to whom to disclose the issue is not the highest priority.  

fullmoon50 said:

Scans Delayed

Hello to all. My husband’s abdominal Ct scan and PETscan were scheduled for January 5 but canceled due to insurance snafu. This is very disappointing but from all that I’ve read here, I’ve stayed mostly calm. My spouse made the necessary calls about insurance and learned there will be a 3-4 week wait before reinstatemeant of benefits. I’d prefer he get scans sooner but that’s an expense he refuses to incur.

Herein is my concern: as far as I can tell, he hasn’t done any research on PCa nor is he sharing the diagnosis with any family or friends. Until the scans were canceled, I was respecting his wish to wait to tell our young adult son about the illness. It feels like a lot of secret keeping so we agreed to talk to our son this coming weekend. That is a great relief as it was feeling like a lie of omission.

I worry that my husband isn’t very far in the process of accepting the reality of his having cancer. He usually attacks a problem in a very intellectual way by doing a lot of reading. He is acting uncharacteristically. Am I expecting too much too soon from him? Can it be denial that is keeping his head in the sand? I am typically the one to research issues like mortgages, auto reviews, etc. because I have the time. We then discuss the best options and go from there. Prostate cancer is different to me. Of course I’ll inform myself but I’m concerned that he’s done so little. The insurance issue should have been handled months ago or at least immediately after he heard the word cancer a month ago.

Am I expecting too much? Suggestions? I’ve told him about this discussion board and sent him links you have all suggested. Now what? Thank you all for your knowledge and willingness to share. 

 

 

We are new to this board.  My husband's diagnosis was end of October.  We chose to wait to tell our daughter and parents.  We wanted to wait until after Christmas and after my daughter's finals, but we had to tell them when we had "another" last minute trip to MSK in NYC.  This was mid December.  By that time, we already knew our plan which is surgery end of January.  My husband had a few months to get his head wrapped around this whole mess so he was able to talk without as much emotion.  His parents took the news very well, and our daughter took it well too.  She's 14.  He was matter of fact on this is what is, we are seeking treatment at what we feel is the best facility in the nation/world, and he is going to be ok.   We dreaded telling her and his parents, but it was such a relief.  We do have to hide our emotions somewhat at home with a young teenager in the house.  If he is having a bad day, we talk it out after she's asleep. Try to keep the mood up for her which I really think helps keep his emotions a little more in check.   We have a limited circle of friends that know what we're going through as well.  It's hard trying to hide what's going.  There is so much embarrassment for my husband - mainly because he feels he will be a freak show once this is over.  He won't be ....he will be the same man I've always loved.  It will be a new different - but that's ok with me.  I hate the stigma that surrounds this disease. 

I am glad for knowing about his attendance at the PCa conference. After all he may have been researching without telling you and after listen to the speakers realized that what he has read had some truth in it . Denial is typical in all us patients when diagnosed with the cancer. There is also the erroneous perception that we are the ones to blame for contracting the disease. On top of that it come the worries involving treatments that will threaten our manhood. ED is a fact in serious jeopardy, no matter what we chose.

I agree in informing the family. No one will be happy with a late explanation in the process. Apart of that, PCa is known to affect the members in the family. For instance, your son and daughter (breast cancer shares the same genes with PCa) have four times higher risk for contracting the disease, once such as been diagnosed in parents. They should start caring on this issue as early as at 40 years old.

I think that money should not restrain proper testing. Surely his present conditions will not alter in a couple of months. He can wait for the insurance reply, but PET is typically not covered by all insurances. He needs to consider which one can best serve him. It should include all diagnosis process, treatment and after care.
Some blood tests are also not included but these are not expensive and can be done at a local laboratory (Testosterone, DEXA scan, vitamin D, B12, etc).
A CT scan cost about $200, PET about $2,000, MRI about $350, Testosterone about $12, PSA about $20, DEXA about $50, treatments about $18,000 to $35,000, etc. Some tests need a doctor's request which consultation fee should be added.

Fullmoon, you are fabulous. Your man is fortunate for your diligence. He will show some grace to you one day. Just needs understanding at the moment.

Best wishes and luck in this journey.

VGama

Maybe overly cautious, but think that it would be a good idea for male blood relatives to have a baseline PSA at 35 years, and of cause women have that annual mamogram. All need to eat and live  heart healthy. I for one do not eat meat or dairy products, and exercise daily..