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    Old 12-28-2021, 06:59 AM   #1
    Jboling99
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    Question Advice new lump on dads spine!!!

    Worried about my dad, any advice welcome. My dad 68 YO, has stage 4 Prostate that spread to bladder. Gleason of 3+4=7. Dr. described as very aggressive form. Just finished radiation. PSA normal after radiation. Initial bone scan before radiation lit up a spot on spine which was never investigated, regardless of ? About why not. He has had a VERY painful knot form on lower back very close if not ON his spine and has grown over the last 6 weeks. CT in ER could not see the lump at all. MRI did not see lump, only mentioned disk narrowing and bulging disk, normal issues for a man of 69. No mention of lump. Pain spreads around lower stomach on both sides and is almost intolerable. He is also very lethargic. I am convinced itís cancer and for some reason the CT or MRI can see it. Doctors say 100% is not cancer related but they canít say what it is. Has anyone else experienced this? Should I be worried and press harder? Thank you in advance for any advice/insight!!!

     
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    Old 12-28-2021, 10:47 AM   #2
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    Re: Advice new lump on dads spine!!!

    Sad to hear of your dad's diagnosis.
    Did he have a PET scan...if not, best to push for that.

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    Old 12-28-2021, 04:19 PM   #3
    Insanus
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    Re: Advice new lump on dads spine!!!

    Quote:
    Originally Posted by Jboling99 View Post
    Worried about my dad, any advice welcome. My dad 68 YO, has stage 4 Prostate that spread to bladder. Gleason of 3+4=7. Dr. described as very aggressive form. Just finished radiation. PSA normal after radiation. Initial bone scan before radiation lit up a spot on spine which was never investigated, regardless of ? About why not. He has had a VERY painful knot form on lower back very close if not ON his spine and has grown over the last 6 weeks. CT in ER could not see the lump at all. MRI did not see lump, only mentioned disk narrowing and bulging disk, normal issues for a man of 69. No mention of lump. Pain spreads around lower stomach on both sides and is almost intolerable. He is also very lethargic. I am convinced itís cancer and for some reason the CT or MRI can see it. Doctors say 100% is not cancer related but they canít say what it is. Has anyone else experienced this? Should I be worried and press harder? Thank you in advance for any advice/insight!!!
    Did you Father have surgery and then radiation?

     
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    Old 12-28-2021, 04:26 PM   #4
    Jboling99
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    Re: Advice new lump on dads spine!!!

    No, he had a bone scan prior to radiation and it did light up in a spot on his spine, not sure where. I kept asking my dad if they were going to make sure it wasnít cancer, because his doctor, on a visit I attended, said if had already spread to his bones they wouldnít do radiation. I never got the answer to why didnít they check the spot on his spine. A week after radiation was finished, they checked PSA, it was 0. The same week, 5 weeks ago, a lump came up on his back. The rest was in my question. The knot/lump was invisible on the ERís CT scan, same on MRI. I read studies that said prostate cancer doesnít show up on a lot of imaging using the methods they use now. The lump exists, I have seen it and he is in pain. They say itís not cancer, but my gut says itís relatedÖ.

     
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    Old 12-28-2021, 06:37 PM   #5
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    Re: Advice new lump on dads spine!!!

    Hi Jboling99 and welcome to the Board!

    You wrote:
    Quote:
    Originally Posted by Jboling99 View Post
    ... I read studies that said prostate cancer doesnít show up on a lot of imaging using the methods they use now.
    It's very important to find out the type of scan used. Normally, these days, bone scans are not done because they so often are not positive, but they are appropriate for cases that could be aggressive, and, though you have not provided your dad's key statistics, I'm thinking those indicated likely aggressive cancer. Normally, I doubt a man with a Gleason of 3+4=7, an indicator of "favorable intermediate risk" all by itself, would get a bone scan.

    If it was the old workhorse bone scan based on an isotope of technetium (Tc) 99, then usually at least 10% of bone at a site needs to be invaded by cancer before the scan will show a potential spot for metastasis. That means that cancer in smaller amounts can be missed. Some great new scans, very sensitive for prostate cancer and also very specific for prostate cancer, will miss cancer if it does not have the PSMA (Prostate Specific Membrane Antigen), protein; most prostate cancers have it, but not all. Other scans are a bit less sensitive and specific but are not dependent on PSMA. You can call the office that did the scan, or your husband's doctor, and find out what kind of scan was done.

    As far as a spot that lights up (actually looks black on a Tc-99 bone scan), there are often other reasons for black spots, such as trauma at the site in the past or arthritis. Doctors who interpret bone scans are good at figuring out whether a spot is likely cancer or likely something else, but sometimes they get it wrong. If it were me, I would have a discussion with one of the doctors to find out why they did not consider that spot on the spine to be cancer.

    One other point: there is an intravenous drug, Xofigo, that includes a hunter/cancer killer combination that seeks out prostate cancer in bone and then wipes it out with a precisely delivered dose of radiation. You might want to check into that, though your father's doctors appear to believe there is no spread to the bone yet.

    Quote:
    Originally Posted by Jboling99 View Post
    The lump exists, I have seen it and he is in pain. They say itís not cancer, but my gut says itís relatedÖ.
    It could well be a coincidence, but someone should be able to figure out what it is. Keep pushing for an answer.

    Good luck!

    Ö.Jim

    - - - - - - - - - - - - - - - - - - - - - - - -
    22 years as a survivor. Doing well. Diagnosis Dec 1999 PSA 113.6 (first ever), age 56
    Gleason 4+3=7 (J. Epstein, JHU), all cores +, most 100%; "rock hard" prostate with ECE - stage 3, PNI, PSADT determined later 3-4 months; technetium bone scan and CT scan negative; prognosis 5 years.
    Later ProstaScint scan negative except for one suspicious small area in an unlikely location. ADT Lupron as first therapy, in Dec 1999, then + Casodex in March 2000, then + Proscar and Fosamax in Sep 2000. Rejected for surgery January 2000; offered radiation but told success odds were low; switched to ADT only vice radiation in May 2000, betting on holding the fort for improved technology; PSA gradual decline to <0.01 May 2002. Commenced intermittent ADT3 (IADT3) with first vacation from Lupron & Casodex. Negative advanced scans in 2011 (NaF18 PET/CT for bone) and 2012 (Feraheme USPIO for nodes and soft tissue). With improved technology, tried TomoTherapy RT, 39 sessions, in early 2013, plus ADT 3 in support for 18 months (fourth round of IADT3), ended April 2014. Continuing with Avodart as anti-recurrence shield. Current PSA, for some reason based on a less sensitive test on 7/20/2021 was <0.05, still apparently cured in my ninth year since radiation (PSA as of 12/2/2020 was <0.01). (T 93 as of 12/2/2020.) Supportive diet/nutrition, exercise, supportive medications during this journey, as well as switches in antiandrogen, 5-ARI, and bone drugs. Barely noticeable side effects from radiation; continuing low T, likely do to long use of ADT, but good energy and adequate strength. I have a lot of School of Hard Knocks knowledge, and have followed research, which has made me an empowered and savvy patient, but I have had no enrolled medical education. I have also had 225 undergraduate classroom hours just in statistics and experimental design, plus more in graduate school, which dwarfs what most doctors have, and that has made my ďhard knocksĒ experience more meaningful. What I experienced is not a guarantee for all but shows what is possible.

     
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    Old 01-07-2022, 01:53 PM   #6
    john4803
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    Re: Advice new lump on dads spine!!!

    I just finished (today) 5 doses from a CyberKnife treatment of a metastases on the T-11 Lamina, of my spine. Each dose was 500 (don't remember the units), for a total of 2500, over 2 weeks. Absolutely no side effects, so far! The hardest part was laying completely still for 50 minutes, at a time. I did not have any pain before discovery.

    Had only 1 metastases show up on a Fluciclovine PET Scan, so far. Will wait 3 months, retest PSA (was 0.4) and have another, more advanced PSMA Scan.
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    (2/18) IMRT/IGRT (45Gys), (3/18) (66Gys)
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    Old 01-08-2022, 04:14 PM   #7
    Jboling99
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    Re: Advice new lump on dads spine!!!

    Thank you everyone for your response.

    Question to you, John4803, did they pet scan as part of your planned routine treatment plan to find the metastases to your T-11? What I am saying or asking is, if you didn't have pain, I am assuming it was found because the doctor followed a protocol to check your bones to verify whether or not metastases had already occurred?

    I ask b/c dad's urologist did a Bone Scan (I don't think it was a "Pet Scan") prior to radiation. He said if there was metastases into the bone, my dad would not go radiation treatments but instead treat him with a daily pill, my dad called the daily pill a "Chemo Pill", not sure if he had that right, that he would basically take the rest of his life.

     
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    Old 01-29-2022, 08:48 AM   #8
    john4803
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    Re: Advice new lump on dads spine!!!

    Sorry, but I did not get notice of your post, for some reason and just now saw it.

    After a semiannual PSA reading of above 0.1 (0.4) my Medical Oncologist (MO) recommended an Axumin PET/CT Scan. My Radiation Oncologist (RO) then recommended Cyberknife. My lesion was about a half inch in size & was trying to get to the Spinal Cord from the T-11 Lamina. It was into the space around the Cord but no touching it. So, as a result I had no pain or numbness.

    Following the Cyberknife treatments, I will wait 3 months (4-13-22), get a PSA reading and undergo an even more sensitive scan (PSMA PET), which just became available at my Cancer Care Facility (Lake St. Louis, MO, SSM Health), in January.

    The pill your are referencing is probably Eligard (Lupron) or some variation, which lowers the Testosterone levels, which Prostate Cancer feeds on. At my age, 74, the MO and RO do not like using it, due to side effects, etc., even though mine were mild when I was on it for 2.5 yrs., after having my Prostate removed and follow up radiation. If the Metastases are 5 or less, per my MO, he recommends Cyberknife radiation vs. Lupron or Chemo.

    Again, sorry I am just getting back to you and will keep you posted of my progress.
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    DOB 4/7/48, Live just West of St. Louis, MO.
    Prostate - 70G, Pc 40%
    T3b, GS 9
    11/17 RALP
    Lupron every 6 mon., (11/17 - 5/20) 2-1/2 yrs.
    (2/18) IMRT/IGRT (45Gys), (3/18) (66Gys)
    PSA

     
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