Husband Newly Diagnosed

fullmoon50
fullmoon50 Member Posts: 40
edited December 2017 in Prostate Cancer #1

My husband was told last week that he has prostate cancer. He had an abnormal DRE and his PSA was >30. We have no further information but I’ll go with him on Wednesday December 20th to see the urologist. One of the most crazy-making facts thus far is that he had a PSA of 9 in the Summer of 2016 but his primary doctor neglected to tell him. So the cancer has been growing unchecked for more than a year.

I know we have very limited information at this point. However I did read that the chance of advanced/metastatic cancer is greater when a man presents with a PSA >20. Does anyone have thoughts on this point?

Also, what questions should we be asking on Wednesday? Are there particular points I should pay more attention to? This urologist is not affiliated with a teaching hospital. We are within 30 miles or so of University of California San Diego hospitals. My inclination is to insist he go there. Thoughts?

I want to be supportive without being a nag. I’ll admit that it’s hard because his health has never been a priority with him. He is overweight , has Type 2 diabetes, and has had hypertension for 35 of his 65 years. He has been hospitalized 3 times in the past 4 years for episodes of congestive heart failure. He is NOT in heart failure as they have been discrete episodes. From others’ experience, will these health issues complicate PCa treatment?

Thanks in advance. This may be a duplicate post but I can’t find the original.

 

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Comments

  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    First things first

    Hi Fullmoon,

    I am sorry for the situation. I have some questions too but firstly let me answer to your above three inquires.

    (1) Regarding the high PSA; surely high values are typically a cause of cancer but a big volume of benign hyperplasia (big glands) also causes an increase of the PSA that sometimes can reach above average values. The only way to judge an aggressive form of cancer and a voluminous spread is by testing via a biopsy and proper image exams. In this regard I wonder how he was diagnosed with prostate cancer. The PSA does not diagnose cancer but suggests cancer.

    (2) Regarding the List of Questions; I would like to point out that you should accompany him to the consultations, taking notes or taping the conversations. You can prepare your own list based on below links, including items in regards to his other health issues that you mention above. The doctor assisting your consultation on Dec 20 is an urologist (nothing wrong with that) but you should consider a Medical Oncolopgist due to the involvement of his case of diabetes. Additionally you should get second opinions from a radiologist as radiation treatment is commonly better incase of spread. In such regards, the urologist may be better for the initial tests and for the clinical stage. You should get all evidences and copies of all exams and tests, and move forwards timely without rushing. Here are the links:

    https://csn.cancer.org/node/224280

    http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-talking-with-doctor

    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    (3) Regarding the Diabetes and Heart issues; these may limit the treatment protocol as well as some sort of testing. A typical issue in diabetes cases is kidney insufficiency (CKD) which condition would limit the use of contrast agents restricting the type of image studies. The problem also restricts the compound in chemotherapy or drugs in hormonal treatments. Surgery may be restricted due to and depending on the level of the heart problem. He will need to get a medical oncologist to help in guiding his treatment steps along his journey.

    I wonder how big he is. You commented him being overweight and that can limit surgery too. In any case the first step is to get a proper diagnosis leading to a due clinical stage. From there you should consider the opinion of a medical oncologist. The final decision should be done by your husband so that you can help him by education on prostate cancer, treatments, risks and side effects, so that you can point out any issue that will prejudice his quality of life. For instance; incontinence, ED, colitis, etc.

    Here are some materials for you to read;

    http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

    Physical fitness programs and proper nutrition are important when dealing with prostate cancer. Here is a copy of UCSF's publication on Nutrition & Prostate Cancer;

    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

    Best wishes and luck in his and yours journey.

    VGama

    Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

  • fullmoon50
    fullmoon50 Member Posts: 40

    First things first

    Hi Fullmoon,

    I am sorry for the situation. I have some questions too but firstly let me answer to your above three inquires.

    (1) Regarding the high PSA; surely high values are typically a cause of cancer but a big volume of benign hyperplasia (big glands) also causes an increase of the PSA that sometimes can reach above average values. The only way to judge an aggressive form of cancer and a voluminous spread is by testing via a biopsy and proper image exams. In this regard I wonder how he was diagnosed with prostate cancer. The PSA does not diagnose cancer but suggests cancer.

    (2) Regarding the List of Questions; I would like to point out that you should accompany him to the consultations, taking notes or taping the conversations. You can prepare your own list based on below links, including items in regards to his other health issues that you mention above. The doctor assisting your consultation on Dec 20 is an urologist (nothing wrong with that) but you should consider a Medical Oncolopgist due to the involvement of his case of diabetes. Additionally you should get second opinions from a radiologist as radiation treatment is commonly better incase of spread. In such regards, the urologist may be better for the initial tests and for the clinical stage. You should get all evidences and copies of all exams and tests, and move forwards timely without rushing. Here are the links:

    https://csn.cancer.org/node/224280

    http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-talking-with-doctor

    http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

    (3) Regarding the Diabetes and Heart issues; these may limit the treatment protocol as well as some sort of testing. A typical issue in diabetes cases is kidney insufficiency (CKD) which condition would limit the use of contrast agents restricting the type of image studies. The problem also restricts the compound in chemotherapy or drugs in hormonal treatments. Surgery may be restricted due to and depending on the level of the heart problem. He will need to get a medical oncologist to help in guiding his treatment steps along his journey.

    I wonder how big he is. You commented him being overweight and that can limit surgery too. In any case the first step is to get a proper diagnosis leading to a due clinical stage. From there you should consider the opinion of a medical oncologist. The final decision should be done by your husband so that you can help him by education on prostate cancer, treatments, risks and side effects, so that you can point out any issue that will prejudice his quality of life. For instance; incontinence, ED, colitis, etc.

    Here are some materials for you to read;

    http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

    Physical fitness programs and proper nutrition are important when dealing with prostate cancer. Here is a copy of UCSF's publication on Nutrition & Prostate Cancer;

    http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

    Best wishes and luck in his and yours journey.

    VGama

    Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

    How PCa Was Diagnosed

    Thank you, V, for a prompt reply and the attached resources. His primary routinely checked his PSA though he didn’t mention the prior 2016 elevated PSA. When that doctor got the results indicating PSA is now >30,he referred P. to the urologist. The urologist found DRE results abnormal and followed that with a biopsy. My husband got a phone call that only told him biopsy shows cancer but with no further details. I assume we get the full report on Wednesday. I was quite shocked that the call dropped the headline but without the story details. 

    P. is 5’10” and weighs about 230. He’s been seeing an endocrinologist as well as a cardiologist. His hypertension and diabetes is at least in part due to hormonal issues in his adrenal glands. The prospect of hormonal therapy for cancer concerns me but now I know that he should probably see a medical oncologist. Thank you for that info.

    I will study the links you noted. I appreciate that very much. Tonight I’m awake and thinking of my 34 niece who tomorrow will undergo a bilateral radical mastectomy for cancer in both breasts and adjacent lymph nodes. Her kids are 8 and 11. And a few days later, my 22 year old niece will have surgery to remove an ”avocado size” cancer from her thyroid. (Neither is a biological relative of my spouse.) My head is spinning with cancer info. They are both at a distance from me so I need to switch gears to help my husband. Thanks for your help with that.

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited December 2017 #4
    .

    There is a weight limit for radiation, however your husband is within limit.

    I am sorry for the health issues that are occuring in your family. I wish them well.

    Since heart disease is epidemic, even we who have been diagnosed are more likely to die from heart disease than prostate cancer, so your husband (and you) need to follow a heart heathy life style; heart healthy is prostate healthy. Vasco gave the UCSF source that will be helpful to you.

    There is a family correlation between prostate and breast cancers, so if your husband is diagnosed, family members to include brothers, sisters, aunts, uncles and even cousin need to be notified.

    I agree that you want to go to a center of excellence for your husbands treatment. There is a difference betweeen doctors and facilities. US News and World lists and ranks best hospitals by specialty. You may wish explore this list for UCSD and other hospital near you. 

    https://health.usnews.com/best-hospitalsa

    I live in Orange County but drive to UCLA

    local support groups. There are local support groups in the san diego area.....If I remember right, Dr. Barken moderates one of these( I don't know if this is still current). USToo.com sponsors local support groups world wide, so google them

    .....

    PS Make sure that you receive a hard copy of the pathology report and and other pertinent information. You will need this for visits to specialists and discuss here if you so wish.

  • JayAur
    JayAur Member Posts: 33

    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.

  • fullmoon50
    fullmoon50 Member Posts: 40
    Well, that biopsy news today

    Well, that biopsy news today sure sucked. Darn it! Eleven cores were retrieved and one was missed by needle. The 11 cores all had cancer. One had a 40% volume while the other 10 had volumes ranging between 60% and 80%. His Gleason is 10. PSA is 34.

    The urologist recommends an abdominal CT and a specialized bone PET scan. I asked about the Tesla MRI which is available. While he thinks the PET scan is what’s needed, he agreed that we can discuss that with a radiation oncologist. I mentioned my husband’s other health issues and asked about a medical oncologist. He agreed that’s appropriate. And we did get a hard copy of biopsy.

    My husband had decided to not do any research prior to getting biopsy report. He was therefore stunned  by the results. I was intellectually better prepared but it’s still shocking to hear the words. The Doctor explained that the cancer will be staged based on scan results. I guess my concern is that my husband is in the initial shock and panic that so many of you have shared. I’ve told him about this discussion board because I’ve learned a lot from each of you. I don’t want him to feel that this is an urgent problem requiring a quick decision. My wish is that he go to the local cancer center affiliated with an outstanding teaching hospital. I guess that’s my impatience about how I hope he approaches the diagnosis. Hmm... time to practice what I preach and allow him the dignity of processing this terrifying news in his own time. 

    Thank you for all for sharing your journeys. Here’s hoping he’ll join you here!

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    .

    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.

  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    We will try helping him in his doubts

    Fullmoon,

    We all would welcome him to this forum and would be ready to help as far as we can. In any case, you know by now that Gleason score (5+5) 10 is the highest in aggressivity. Your husband needs the assistance of a medical oncologist specialist in PCa, as soon as he gets the scans and is provided with a clinical stage. Very rarely do Gleason 10 guys present a contained case. Some are localized (near the gland) and some at far places, commonly in bone. The bone scan, PET and MRI will show how far the cancer has spread, if any.

    Apart from the high aggressive Gleason grade, your husband's case is voluminous (the whole gland seems to be infested) requiring a more aggressive type of therapy. I wonder if your husband has any symptom that he can relate to the cancer. For instance; how about urination problems, or ED, or pain?
    The common preferences in aggressive localized cases is a combination of two types of radiotherapy (Brachy +IMRT) or the combination of Surgery, to dissect the whole gland (debulking the big tumor) plus IMRT, to cover the localized lymph nodes, bone and adjacent tissues. When the cancer is found at far places doctors tend to recommend chemotherapy plus hormonal treatment (ADT), reserving radiation for latter administration to alleviate pain when this becomes unbearable or when any bone metastases become dangerous in joints leading to its collapse and paralyzes.

    I believe that his oncologist will explain in detail my above comments but you can add questions to your list in regards to the above once you get the results from the scans.

    I would recommend you to get some particular tests now before starting any treatment, such as a DEXA bone densitometry scan (to verify any osteopenia requiring the use of bisphosphanates typical in hormonal treatments), Testosterone (to verify the benefit in ADT), and a colonoscopy (to check for existing ulcerative colitis). I think he got the lipids checked due to his other illnesses.

    Be prepared and do things coordinately. Read books to know more about the meaning of aggressive cases. I would recommend you to check on this link for reading materials; https://csn.cancer.org/node/311252

    His case is not simple but he will manage to control it. Many survivors in this forum with similar diagnosis are doing well and enjoying life fully.

    Best wishes and luck.

    VGama

     

  • fullmoon50
    fullmoon50 Member Posts: 40
    Thank you, Hopeful and Vasco.

    Thank you, Hopeful and Vasco. As always, I am comforted that there’s a place to connect with men who have similar experiences with PCa. Vasco, he is entirely asymptomatic at this point. The thought just occurred to me that he has been told in the past year that he has low testosterone. Now I’m wondering if that means that ADT will be less likely to put him in 2 year remission as the urologist explained it would do. Ah well, it’s a step at a time. He will schedule the scans today. Does it take very long to get scan results? 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member
    Varies

    Full Moon,

    Scan results, like biopsies, vary by the institution performing them, and the priority the doctor puts them on.  The imaging is available almost immediately online for doctors to look at, but review by a radiologist takes a bit longer, and only a radiologist can read the scans definitively.  It usually takes longer to get a scan than to get results.  I WOULD go to a first-class, full service oncology hospital or center for care.  His case is highly aggressive and probably significantly advanced.  As Vasco noted, he will need a medical oncologist leading his care, NOT a urologist, unless the urologist is also Board Certified in medical oncology (most urologists are NOT, even when they treat advanced PCa).

    In your first post you asked about his comorbidities (other serious health problems) and what effect they might have.  His weight, diabetes, and especially the CHF probably preclude surgery, although metastatic disease usually is not approached via surgery anyway.  His care will very likely consist of radiation (IMRT/IGRT) and Hormonal Therapy (HT).  Chemo is a maybe, but is usually held off until after HT runs its effective course, except in severe cases that need to be beaten back before HT is begun (as I said, that would be a rare/atypical sequence of treatments).

    I would not try to read anything in to old T-level results at this time.   

    And, there is no way any oncologist could reasonably estimate how long HT will work on him:  Any result between wellness for years (most common) to no improvement (rare) are all within clinical possibility.  But it is probably a good sign that his doctor is currently optimistic.  Several regulars here have been diagnosed with results as bad as your dad's and have done well for years....

    I am sorry so many close to you are having serious cancers addressed simultaneously. I pray they all come out of this well.

    As several have stated, your husband's case is not suitable for a 'local yokel' to lead.  'Thirty miles to San Diego' is nothing when battling cancer; many people have to go around the country or even around the world for the best specialists.

    max

  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    Low Endogenous Testosterone has influences on PCa matters

    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
    fullmoon50 Member Posts: 40
    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.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,721 Member

    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.

    great question

    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

  • fullmoon50
    fullmoon50 Member Posts: 40
    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. 

     

     

  • JJO
    JJO Member Posts: 20 Member
    edited January 2018 #15
    Telling friends and family

    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.  

  • Old Salt
    Old Salt Member Posts: 899 Member
    All I can say

    to Fullmoon is that you are doing a fantastic job educationg your self while facing a very difficult situation. The fact that you will be telling your son might entice your husband to become more involved in the planning.

    On the other hand, finding highly respected medical and radiation oncologists may be all that is needed for now.

  • graycloud
    graycloud Member Posts: 42

    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. 

     

     

    Telling family

    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. 

  • fullmoon50
    fullmoon50 Member Posts: 40
    edited January 2018 #18
    Support Group

    Hello, everyone. I found a local support group in La Jolla, CA and my husband and I went to today’s meeting. There was a panel of 4 speakers from Moore’s Cancer Center at UC-San Diego: 3 radiation oncologists and a medical physicist. You can find the support group website online at ipcsg.org. They post a newsletters as well as videos of their meetings.

    This was the most information my husband has received apart from the biopsy results appointment with his urologist. There was an open questions session after the speakers. I was interested whether he might qualify for one doctor’s work with intermediate and high risk PCa. He has added brachytherapy to external radiation with good results. There will be a summary online at some point. Anyway, I asked my questions and his answer was hard to hear as it sounds unlikely-not impossible- that my spouse will be a candidate. Something about the discussion and the doctor’s response to my questions got my husband’s attention in a way nothing else has so far. He turned to me and said “I‘m totally fucked.” That was the first acknowledgment I’ve heard from him about the seriousness of his diagnosis. It hurt my heart to see that understanding dawn on him. 

    He still hasn’t scheduled the CT scan and Petscan until insurance issues are worked out. I think that being in a room with about 100 men with PCa and listening to the doctors finally has him peeking over his well-fortified defenses to see what battle he’s facing. My fingers are crossed that he will join you on this discussion board soon. I’ve been lurking and reading and continue to be impressed and grateful for your knowledge and sharing of experience.

  • VascodaGama
    VascodaGama Member Posts: 3,491 Member
    The seriousness of a positive PCa diagnosis

    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

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    PET scan/ssupport groups

    As I mentioned to you, I live in Orange county. Many men that I know have gone to see Fabio Almeida, MD,phoenix molecular imaging . He does a acetate PET scan that is considered investigational, but provides better results than most PET scans that are available. The cost for this MRI is somewhere between 2500 and 3000 dollars. It is not covered by insurance.

    https://www.google.com/search?authuser=0&ei=JAdlWobMNIm6jwOt1qvwDA&q=c11+acetate+pet+scan+phoenix&oq=phoenix+molecular+imaging&gs_l=psy-ab.1.0.0i71k1l4.0.0.0.189919.0.0.0.0.0.0.0.0..0.0....0...1..64.psy-ab..0.0.0....0.U5Pib7bg3io

    There are also clinical trials that may be available, at no charge, which you need to investigate. Since your husband has not been treated it is more likely that you may find a site. There is also a 68GA-PSMA PET/CT scan that is probably better than the excellent Acetate 

    Also good, but not as excellent as the above two , the Axumin PET Scanning (18F-FACBC) has recently been approved by the FDA for men wih rising PSA after previous surgery or radiaiton.

    ...............................

    Support group(s) Great to attend more than one if possible. USTOO is an international organization that sponsors local support groups worldwide, google them.

    I attend one local to me. On tuesday, the 23rd at 6:30 PM I will be attending one in Long Beach at long beach memorial about various forms of radiation. 

    MeeƟng: Tuesday, January 23, 2018 Refreshments: 6:30p.m.—7:00p.m. Topic: “What every man should know about radiaƟon therapy for prostate cancer” Speaker: Randy Wei, MD PhD LocaƟon: Miller Children’s Pavilion Conference Room A2 

    Also on Thursday January 25 I will attend prostate forum of orange county; there is a lecture at 7PM about HIFU that I do not recommend to you, but at 5PM to 7PM there is are two meetings, one for newly diagnosed and the other for advanced cases. I will be at the advanced cases discussion group....I find this to be very informative, discussing particulars of each situation that is presented.

    http://www.prostateforum.org/

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Baseline PSA at 35

    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..