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Thread: Overload of info, trying to understand

  1. #1
    Regular User
    Join Date
    Jun 2018

    Update-Overload of info, trying to understand

    Hi! Not sure how to post in the Newly Diagnosed part but have found some very useful info her on my husband's condition. Thanks everyone! I'm looking for some help here understanding what we've been told to date. Last month my BH went to a new Dr since he had lost confidence in his previous one...for good reason it seems. The new Dr was very thorough and started with a complete physical which included a PSA....which was 270! The testing commenced with an ultrasound and CTScan. We were waiting for the CTScan results when we ended up in emergency because he couldn't pee and was in great pain. They inserted a catheter which helped for that issue but created others. When we were in emergency the Dr told checked and the CTScan results were available and he told us that it looked like there was prostrate cancer and his lymph nodes nearby were affected as well as a "spot" on his lower back. He also told us that my BH's PSA had been elevated 5 yrs ago but no follow up was done by the DR or my BH. A bone scan was scheduled and results showed no problem with his back (perhaps degenerative discs we knew about and/or arthritis) but did show an issue in the front of his hips. He had a biopsy today and the catheter was removed..hopefully will not have to back in. We have been told (prior to the biopsy) that he is not a candidate for surgery and chemo will likely be the best way to go. We understand we have to wait for the biopsy results in a couple of weeks to confirm things. So much info to digest so any insight, suggestions would be great!

    Last edited by CMC; 06-18-2018 at 10:03 PM. Reason: Updated results

  2. #2
    I am sure this is a most difficult time for you all. The key is to stay present while you get more info. Learn all you can. Confidence in your doc is critical. I wish you well. Denis
    65 YO healthy man
    PSA has been 4.1/2 for a couple years,
    PSA 5/1/17 4.6,
    Multiparametric MRI, 5/15/17 showed lesion
    13 core needle biopsy 3 cores positive 3+3 and one positive in the lesion, may be overlap
    All cores less than 30%
    8/22/17 - second opinion pathology shows a small amount of (3+4) in one core, < 5%, ordered decipher to inform next steps
    9/27/17 -Decipher test shows intermediate risk so now exploring treatment options.
    2/6/18 - completed HDR BT
    5/3/18 Post HDR BT PSA 1.3
    9/18/18 PSA 1.2
    Thanks, Denis
    "One day at a time"

  3. #3
    I'll try to tell you what I can, but understand that this is only speculation based on what you have presented here, and is not intended as any form of medical advice. The biopsy is the ONLY way to know if (!) it is cancer, and if so how bad. But the very high PSA level and the appearance of either lymph node involvement or bone involvement makes it not look good.

    There is a slight possibility that his cancer is still contained in the area of his pelvis, which is good for possible radiation treatment. Prostate cancer - even aggressive PCa, is very slow growing and generally chemotherapy is not the first line approach, because the prostate has very little blood supply and the chemo just isn't delivered effectively. Perhaps the chemo mentioned is actually hormone therapy... an injection and/or pills that are very commonly used for advanced PCa. If indeed it has spread to his bones, whether to his spine or pelvis, he will probably be on hormone therapy (ADT) for the rest of his life.

    If he is a candidate for radiation he may be on HT for a couple months beforehand to weaken the cancer, and then once the radiation is complete, then the chemotherapy (likely docetaxel) is started to deliver the final blow to the cancer. That's pretty much it as far as first line treatments are involved. There are newer forms of HT that can be administered in addition to or as follow up to first line HT, and some additional therapies for those who have not responded well to the first line. He is likely not a candidate for surgery, so if the biopsy is inconclusive there won't be much to work with.

    I am not telling you this from experience, but I personally came very close to going down the path of your husband. My PSA rose and my cancer progressed for four years before I changed doctors and finally was given an MRI which found my tumor... which was hidden away up under my bladder. I was staged at 3B, which is just before stage 4 which involves metastasis and lymphatic involvement. There are various "grades" of advanced prostate cancer, such as he may be "T3bN1" if it is still in his prostate bed, has invaded some lymph nodes but has not metastasized into his bones. From there it only gets worse.

    I don't mean to be the deliverer of doom and gloom, but you should probably be prepared for some tough times ahead. My wife and I both went thru cancer treatments over the past two years and it will require a lot of patience on your part and bravery on the part of your husband. If you have, uh, personal problems when dealing with all of this do not hesitate to write about it here. Many of us have been thru it ourselves and will help in any way we can.

    Of course, there is the possibility that his situation may turn out to be not so bad after all. It does happen. There are miracles and there are surprises. But do not ever, ever get duped into alternative cures. Herbs and diets have not ever been proven to cure cancer, if indeed that is what he has. There are no "short cuts". Good luck to you both!
    Late 2012: PSA 4, age 62 all DRE's 'normal' ... Early 2014: PSA 9.5, TRUS biopsy negative
    2015: PSA's 12 & 20, LOTS of Cipro ... Mar'16: PSA 25, changed Urologist
    Jun'16: MRI fusion biopsy, tumor right base, 6/16 cores: 2-40%+2-100% G8(4+4)
    Aug'16: DaVinci RP, -SM, 11 LN-, 53g, 25% involved, PNI, 6mm EPE, BL SVI, pT3B
    Jan'17: started 18 months Lupron ADT, uPSA's ~.03
    May'17: AMS800 implanted, revised 6/17 ... Aug'17: 39 tx (70 Gy) RapidArc IGIMRT
    Jan'18-Jan 2019: PSA's <0.008, T=9 (still on Lupron)
    Apr'18: Dx radiation colitis, Oct'18: Tx sclerosing mesenteritis
    "Everyone you meet is fighting a battle you cannot see"
    Mrs: Dec 2016
    Dx stage 4 NHL/DLBCL, Primary Bone Lymphoma
    spinal RT boost+6X R-CHOP21+IT MTX via LP. Now in remission
    Read our story at CancerCoupleBlog.com

  4. #4
    Hello CMC: Not much to add here from what Brother RobLee has offered. I just want to welcome u to the forum, and let u know that u are not alone. Based on the information given, I would go under the assumption that u have a serious case, although that does not mean it can't be controlled and managed for many years to come. For now, I would be taking this case to a major cancer center, and look for meetings with a RO and MO. If u are in a remote location, perhaps u could indicate where u live and others will have some suggestions as to treatment centers. It is a lot to take in, but the beginning is always the hard part. Please keep us informed as to the results, and again RobLee has offered excellent advice. Good Luck, MM
    DOB:Feb 1958
    PSA: 9/15: 5.9 PC/Father
    DRE: Negative
    Biopsy: 10/1/15. Second Opinion University of Chicago. 9 of 12 cores positive. G6: 5 cores, G7 ( 4+3) 4 cores
    10/12/15: Ct scan/bone scan- Negative
    Clinical Staging: 10/28/15 T2c
    ( RALP) University of Chicago 12/29/15

    Final Pathology Report; Jan. 6 2016

    15 lymph nodes; no tumor present
    gleason upgraded to 9 ( 4+5)
    Right SV Positive
    Left SV and vasa deferentia, no tumor present
    PI present
    uPSA 2/9/16 0.05
    uPSA 3/23/16 0.11
    Casodex 4/1/16-8/5/16
    Lupron 4/15/16-5/15/18
    SRT 6/14/16...8/5/16 38Tx
    uPSA 8/10/16---2/14/19 <0.05
    Feb. 2017 Loyola Chicago
    11/15/2018 AUS 800 Implanted
    12/18/18...T Levels...Free T 42.8...Total T...262

  5. #5
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Sorry to hear about this terrible situation, but glad you found our forum so we can try & help.

    Indeed, the situation you described would seem to be a classic case of malpractice by a doctor who apparently ignored serious warning signs and apparently did not even discuss them with you BH.

    I'm wondering why it will take a couple weeks for the biopsy results. Should be ready within 3-5 days.

    Please let us know about the biopsy report when available. We'll try to comment on it and also offer as much support as we can.

    Maybe this was caught in the nick of time before it may have spread to distant areas of his body.

    Good luck!
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  6. #6
    Not much to add, other than welcome, Roblee gave you a great overview and i agree with MichiganMan, if you could get to a major NCCN comprehensive cancer center like Mermorial Sloan Kettering, MD Anderson, etc, it would be ideal. This is not gonna be fun, but you will get through it, and as MM said, it can be managed for years, or decades. And new treatments are being approved very regularly.

    One more thing. At the very least, your husbands previous Doctor should be made aware of whats going on, and that it was his lack of proper care that put your husband in this position. Because if he is not aware, he will do the same thing to the next guy. At the very least.
    Diagnosed at age 64 (in November, 2014), PSA 4.3
    Nov 2014 BX 3 of 12 cores positive original pathology G6 10%, G6 20%,
    G8 (3+5), 70%. Johns Hopkins second opinion, G6, G6, G6
    Surgery with Dr Ash Tewari Jan 6, 2015
    Post surgical pathology, stage T2c, bilateral disease, upstaged to G7(3+4)
    5% of Prostate involved in Tumor. Organ confined, Margins, SV, lymph nodes (9) all negative, PNI positive
    PSA <.02 until (uh-oh), 2/17 .02. Then 5/17-.033, 8/17-.033, 11/17-.046, 4/18-.060, 6/18-.068, 7/18- .082, 8/18-. 078.
    Decipher score low risk, .37
    ADT/Firmagon started August 2018. SRT to start SEPT 2018

  7. #7
    Regular User
    Join Date
    Jun 2018
    Thanks RobLee. What you're saying is what we're hearing but until we get the biopsy results, we won't know for sure. We were back at emergency in the wee hours and my BH had to have a catheter put back in. Perhaps the biopsy aggravated the prostrate and we shouldn't have had the catheter removed afterwards. He was able to pee afterwards but it all shut down later in the night with horrible spasms. Live and learn. I'm trying to stay positive and learn as much as possible. Thank you for your input!

  8. #8
    Regular User
    Join Date
    Jun 2018
    Hi MichiganMan. We are lucky(?) to have a specific prostrate cancer centre nearby that we're going to. What is a RO and MO?

  9. #9
    Regular User
    Join Date
    Jun 2018
    Hi Highlander! No idea why it takes so long to get the results and that is on a STAT basis. We are in Canada so perhaps that makes a difference? I'll update when we do have the results.

  10. #10
    Regular User
    Join Date
    Jun 2018
    Hi Protoman. I have thought about contacting the former DR and letting him know what's going on. However, my BH was aware of this and I don't know if the seriousness was conveyed to him or if he didn't think it was a big deal? Too late to think about that.


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