Advanced Cancer and waiting...

135

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  • bdhilton
    bdhilton Member Posts: 846 Member
    edited August 2021 #42

    You made me laugh

    Yes, this time we expected to hear the freaking word "positive" but were disillusioned with the negative conclusion. I wonder the area where they will bore. The two negative cores should have been sufficient. Interesting that the pathologist correlated the findings to radiation scars  (smudgy chromatin)  that was also the opinion of my doctor about the tissue at the prostate bed identified in my F18 choline PET as positive to malignancy. 

    Let's wait for the results and talk about the ADT details if you have to go through it. 

    Best wishes. 

    VG

    Third biopsy

    Hey VG,  Been between traveling out of country and harvesting 9000 lbs of blackberries then juicing.  A local craft brewery bought them.  Next are Asian Pears, Barlett Pears and various apples not to mention about a ton of tomatoes going on right now...

    Had the third biopsy about three weeks ago and got the positive results  we were looking for..

    The cancer is not in the best place but it's confirmed and I'm getting a 40% success rate on the procedure....lots of complications are possible too like my bladder and ureter, which could lead to surgery....

     

    I start a 6 month course of lurpon on Tuesday and a complicated branchtherapy procedure early October...I'll hope for the best...

    What is interesting is my cribriform cancer cells with a localized cancer 12 years later...The details of the biopsy is below...thank you for your continued interest!

    FINAL PATHOLOGIC DIAGNOSIS

    US right retrovesicle space, needle core biopsy: Involved by prostatic
    adenocarcinoma; see comment.


    COMMENT:
    H&E sections show four cores of fibrotic tissue, three of which
    contain prostatic adenocarcinoma. The tumor shows almost entirely
    expansile cribriform morphology and if required to grade, we would grade
    as Gleason score 4+4=8. Perineural invasion is seen. The findings are
    further summarized below:

    3 of 4 cores contain carcinoma.
    The total length of tumor in all of the cores is 14 mm, spanning
    discontinuous foci.
    The total length of tissue in all of the cores is 45 mm.
    The percentage of the tissue involved by tumor is 31%, spanning
    discontinuous foci.
    The percentage of tumor greater than Gleason pattern 3 is greater than
    95%.
    Perineural invasion is present.

     

     

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    edited August 2021 #43
    Success is in the air

    Hi again,

    I wonder if I should congratulate the findings. But at least the positive cores provides a conclusive result allowing to move forward. I understand your worries for the delicate procedure at a delicate area involving the bladder. I hope it all goes well and in your favor.

    Luneray needle-catheters (brachytherapy) may be in fact the best to treat metastases in those soft tissues surrounding the bladder. It is a localized intervention that avoids the consequences of an EBRT modality. I believe that it will zip off those cribriform ugly cells for good. I feel jealous of your success.

    We cannot recheck the 2010 biopsy results that did not identify the cribriform type of PCa or perineural invasion but there are some papers with references to this type when PNI is identified. Cribriform turns Gleason rate 3 into a more aggressive 4, therefore your initial 4+3 becomes 4+4. Invasion of the nerve system is never a good finding, however the scan localized the spots and the brachy will eliminate it.

    I can see the success in your investment too. The 40 acre apple orchard is giving you richness and enjoyment. The Asian pears (called “Nashi" in Japan) are very delicious and healthy as it incorporates the qualities of pears and apples. We cannot find them in Portugal. I wonder the location of your land. It rains a lot there isn’t it?

    I got the covid vaccine certificate (Pfizer) so I  can now leave the country. I may visit your orchard one day for the Nashi, if US accepts EU certificate. 

    All the luck in the next steps.

    Thinking of you.  Best,

    VG

     

  • bdhilton
    bdhilton Member Posts: 846 Member
    Cautiously Optimistic

    Hey VG....yes, like my doctors, I'm cautiously optimistic...it's now in the hands of the Universe...

     My original diagnosed in 2009 was with PNI. Based on my medical file, my medcial team was more than surprised that my reoccurance was "localized" per my recent PET scan. They were expecting it to be in my lymph nodes.

     I always appreciate you dumbing down these complex issues and procedures...

     The family that established the farm, planted a number of Asian fruit trees outside of the commercial plot of Asian Pears, yum, yum for their personal enjoyment and now ours!!!

     We've removed about 12.5 acres already of older apple trees and are still planning on planting several acres of Kazakhstan pomegranates...

     The farm is located in an area in El Dorado County, California called Apple Hill (Camino, CA). Most farms are open to the public, we just wholesale. It's below South Lake Tahoe on the western slope of the Sierra Nevada Mountains (we're about 3800' elevation).

    Our annual rainfall is 51.7 inches, which means that it is one of the wettest places in California. December is the rainiest month with 10.6 days of rain, and July is the driest month with only 0.3 rainy days...It's a Mediterranean climate...we average 44" of snow too...

    I had Covid back in January 2020. Two days in bed and back to work... I'm waiting for my govt to conclude the argument on natural immunity...

    Yes, come eat some of these Asian Pears...they are about ready...

    Oh, my branchytherapy will be 12.5gy x2

    Cheers

     

     

     

  • iam_cancer_free
    iam_cancer_free Member Posts: 3 Member
    edited November 2021 #45
    Total Remission

    I had multiple myeloma for 9 year. August 23, 2021 I am total remission. Two years ago I had Da Vinci surgery. 

  • bdhilton
    bdhilton Member Posts: 846 Member

    Update: On October 19, 2021, I was prepared for brachytherapy (from the spinal to the insertion of the tubes into my prostate bed). For reasons, they aborded the procedure (disappoint is a given, but….

    On December 21, 23, 27 and January 3rd, I will have 5 treatments from the Truebeam radiotherapy system. I’m pleased that my Medical Team made the best decisions in my cancer management with even aborting a procedure in my best interest… I get my 6th month and last Lupron shot on January 3, 2022 too!

     Happy Holidays to all… 

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    edited December 2021 #47

    Changing approaches,

    This decision surprised me. Did they explain the reason for choosing EBRT?

    Surely your choice is the best but did you give up with the brachy due to inserting tubes via the spinal? Wasn’t that possible of inserting the tubes via the perineum (the area between the scrotum and the anus) as prostatectomies are done?

    I am not an expert but I think that the Luneray needle-catheters (brachytherapy) approach would lower the risks of radiation at the delicate area.

    I wish you success in the approaching intervention.

    Best wishes for a good holiday seasons and a happy and fortunate new year 2022.

    VG

  • bdhilton
    bdhilton Member Posts: 846 Member

    Hi VG...Yes, they inserted the tubes via the perineum. He didn't like the position of tubes to tumor after a CT scan prior to radiation and the outcome.

    ...yesterday, he changed the machine to Cyberknife from Truebeam and pushed my start date out a week...I've got several smart doctors working on this for the best outcome...I continue to go with the flow...thanks for your input and interest-BD

  • bdhilton
    bdhilton Member Posts: 846 Member

    And yes, I agree that the Luneray needle-catheters (brachytherapy) approach would have lower the risks of radiation but they've been having great results with cyberknife and truebeam technologies..based on where it sits this was litterially a last second decision in the middle of a surgerical procedure by my doctor, the professor and I'm sure it's in my best interest...Happy Holidays!

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Hilton,

    Please discard my opinions.

    I believe that your team of doctors also preferred the brachy but due to the difficulties in setting the seeds at the proper spots (these are deep areas), saw EBRT as more appropriate. And yes, the majority of oligo treatment is done with high intensity machines (CK and TB).

    Let's cross our fingers that all goes in your favor. Will be thinking on you.

    Best,

    VGama

  • bdhilton
    bdhilton Member Posts: 846 Member

    VG...I'm hoping it goes as well as expected and yes, I was disappointed they backed out of brachy...but still blessed for sure, as I I still have options going into my 13th year! Not bad for starting out as a 4+3, T3b, seminal vesicle involvement, etc... patient!

    Fingers are crossed...

    Best,

    BD

  • tomnl
    tomnl Member Posts: 5 Member
    edited January 2022 #52

    VG, BD,

    I wish you both the very best and a very happy, healthy and blessed New Year . Which part of Portugal are you at VG? Enjoyed my trip there in Nov 2017. Drove from Lisbon to Sintra, Fatima, Porto, Braga, Guimaraes, Douro Valley, Evora, Marvao, Algarve region. Thoroughly enjoyed the country and stayed at airbnbs offered by people with hearts of gold. I was totally impressed. If you do come to CA please do come visit us. I'll be happy to drive you up to BDs farm - not been there but just located Camino CA on the map - about 3 hours from here. Stay strong and positive BD. 

    My first baby step was to learn from other PCa journeys and now taking the courage to post my experience and perhaps get opinion on whether I am on the right path and get knowledgeable enough to quickly get on the same page with what my Drs recommend. Here is my brief journey on this road thus far:

    Oct this year I found myself in this much dreaded PCa club with an initial Intermediate High Risk PCa dx. I was devastated, upset, and angry at the system. But quickly picked myself up, adjusted to the new normal and began my journey up the healing path. I am a long ways off, with much uncertainties and surprises showing up at each turn. PSA went from 3.2/2018, 4.0/2019, 4.8 in Oct 2020, Dr repeated in Dec 2020 at 4.8. Referred me to Urologist - he did another PSA in March 2021 at 4.4. Adverse biopsy effects presented by dr scarred the hell out of me so opted for WW - another PSA in Sept 2021 at 4.8. That is when I bit the bullet and did biopsy. Wish Dr had ordered PSA in 2 months (recommended for WW) instead of 6 months. 

    Biopsy results 9/14 cores reported adenocarcinoma.

    GS 4+3 (2 cores -> 13mm tumor in 16mm core1 & 7mm in 10 mm core2),  GS 3+4 (4 cores), GS 3+3 (3 cores)

    Initial Dx was T2c. Followed up with CT - showed Multiple subcentimeter hypodensities in the spleen (Dr was not concerned). Then bone scan - looked benign with these findings:

    - Mild asymmetry of tracer uptake in acromion of left scapula, away from the AC joint, with suggestion of possible deformity on very limited CT images; query possibly related to old/prior trauma or other benign process, but cannot exclude metastasis here.

    - Mild asymmetry of tracer uptake in right 8th rib laterally (focal) and right anterior 5th rib (more linear), both without obvious fracture or definite sclerosis on limited CT images; while possibly benign, cannot exclude metastatic disease.

    - Spinal and peripheral joint degenerative / arthritic changes.

    - Physiologic urinary tracer excretion.

    - Concurrent CT images are felt nondiagnostic with respect to soft tissue evaluation.

    I was all scheduled for RP pending outcome of PET scan. Then PET scan ruled out RP due to ECE. And the dx upgraded to T3b, then T3c and then T4 based on rib finding in mpMRI.

    I still feel it is old injury, but Dr des not want to chance it and it is too small for biopsy.

    Started Casodex followed by Lupron (24 month course - 4 at 6 month interval). He then added abiraterone (Zytige) + Prednisone 2 weeks after start of Lupron.

    I have crossed the chasm and am fully engaged with the new normal.

    switched to mostly veg diet + fish, No Dairy, No refined sugar, dropped the alchohol. Regular exercise (which I love) + weight bearing, good rest, trying to stay stress free - but that is not always possible.

    Next step: another mpMRI in April followed by Brachy + EBRT (hopefully with spaceOAR) in May.

    I am open to wherever this road leads me to and whatever the outcome. I can only play my part to the best of my abilities and the rest will play out as it may.

    Best regards and Happy, Healthy New Year to all.

    TomN

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Hi Tom,

    Thanks for the invitation. I wonder if Hilton's apple farm escaped the fires that devastated the area.

    Regarding your case, I think that you have been well informed and guided. The plan for Brachy plus EBRT should be well studied to cover the affected spots as radiation cannot be repeated at the same area. Probably it will be advisable to get also another PSMA PET before RT in April. Surely this timing can be extended for a couple of months to analyze the matter thoroughly.

    I also recommend you to get a complete blood panel testing, including the testosterone, to certify the efficacy of ADT drugs, and other health parameters usually affected by the hormonal treatment. Bone involvement also requires you to get a DEXA scan and check for osteopenia/osteoporosis as it could oblige adding bisphosphanates in your treatment.

    I live in the Algarve at the south close to the coast reach in fish, almonds, figs, pomegranates and other stuff considered good in PCa dietary.

    Best wishes and luck in your journey.

    VGama

  • tomnl
    tomnl Member Posts: 5 Member

    Thanks a lot Vasco. Much appreciate it. We did cover Tavira, Portimao, Laos and the tip of the west coast - Sagres.

    I am new to this forum. I wish I knew about this before I got to this stage - but then again I would probably not believe that I would need it and not follow through - oh well!

    I should not clutter bdhilton's thread hear. Being a newby I am trying to understand the protocol and follow ground rules. I probably should start a separate thread. I wonder if it is possible to move posts across threads - in cases like mine where I now realize they do not belong where I posted? mea culpa! bd.

    Adding the following since I am posting this one here .

    Bone Scan:

    RADIOPHARMACEUTICAL: Tc-99m MDP 19.9 mCi IV.

    Whole body planar images acquired approximately 3-4 hours post injection.

    SPECT/CT images of chest, abdomen and pelvis were also acquired, utilizing a low-energy / noncontrast CT scan for attenuation correction and anatomic correlation purposes; this limited CT is not of independent diagnostic quality.

    Results:

    - Mild asymmetry of tracer uptake in acromion of left scapula, away from the AC joint, with suggestion of possible deformity on very limited CT images; query possibly related to old/prior trauma or other benign process, but cannot exclude metastasis here.

    - Mild asymmetry of tracer uptake in right 8th rib laterally (focal) and right anterior 5th rib (more linear), both without obvious fracture or definite sclerosis on limited CT images; while possibly benign, cannot exclude metastatic disease.

    - Spinal and peripheral joint degenerative / arthritic changes.

    - Physiologic urinary tracer excretion.

    - Concurrent CT images are felt nondiagnostic with respect to soft tissue evaluation.


    Bone Mineral Density results:

    Technique: Lumbar spine and total left or right hip Bone Mineral Density (BMD) were determined using a Dual Energy X-ray Absorptiometry Hologic Discovery C machine.

    Findings:

    Bone Mineral Density Classification : Osteoporosis. 

    FRAX clinical risk factors: None reported. 

    FRAX 10-year Fracture Risk are: 3.9 % for Major osteoporotic fracture 0.7 % for Hip fracture

    LUMBAR SPINE BMD   = 0.809 g/cm2  LUMBAR SPINE T-score = -2.6  LUMBAR SPINE Z-score = -1.8 

    LUMBAR VERTEBRAL BODIES INCLUDED: L1, L2, L3, L4  

    TOTAL LEFT HIP BMD = 1.083 g/cm2  TOTAL HIP T-score  = 0.3  TOTAL HIP Z-score  = 0.8  

    LEFT FEMORAL NECK BMD = 0.76 g/cm2  FEMORAL NECK T-score  = -1.2  FEMORAL NECK Z-score  = -0.5  

    Plan moving forward:

    --Lab mid dec 2021, then monthly x 2, then every 3 months after.

    --Lupron 45 mg every 6 months x 2 year soon.

    --zytiga 4 tablets (1000 mg) + prednisone 5 mg daily starting mid dec 2021

    --Visit with oncologist mid jan 2022

    --follow-up with RT doctor for radiation planning.

    --Calcium 1500 mg and vitamin D 2000 mg/day to prevent osteoporosis related to Lupron use.

    --Follow-up bone scan in 6 months.

  • bdhilton
    bdhilton Member Posts: 846 Member

    Happy New Year to you guys Were!

    The fire missed us! We were snowed from Dec 26th until yesterday! Still no power...it's been a big adventure...

    One thing for sure, every prostate cancer journey is different...I have a MRI on Jan 12th

  • bdhilton
    bdhilton Member Posts: 846 Member

    Update...I don't like this new format :-(

    I finished 6 months of Lupron shots on January 3, 2020...

    I finished 5 cyberknife treatments during a two week period ending on February 2, 2022.

    February 2, 2022- psa <0.02

    I receive weekly tests for my kidney function ( basic blood panel) because of the site of my cyberknife treatment...and my 90 day psa test is coming up...

    So far, so good...blessed for sure...happy that I'm behind my 3rd treatment in 14 years and feeling good...now to lose my 20 lb lupron weight gain

    ...

    All the best to all...

  • bdhilton
    bdhilton Member Posts: 846 Member

    New blood work in today:

    PSA: 0.06 Dr. tells me it's the PSA bouncing

    Testosterone: 164ng up from 10ng in March...

    Basic Blood Panel: all within normal ranges. This ends my weekly testing !

    Next testing date is two months out...!

    All the best to all...


  • VascodaGama
    VascodaGama Member Posts: 3,638 Member

    Hi Hilton,

    Nice photos of the wilderness 😊. Your place looks fantastic. There is already two reasons to visit you, the nashi-apples and the scenery.

    I am glad to hear on the results. The PSA is the marker to follow but still in its bouncing status. There is an increase from 0.02 to 0.06 but the threshold for comparing success will be the result at the time when the testosterone reaches a normal level above 250 ng/dL.

    I would like to know about any particular side effect you experienced from Cyberknife. How is everything?

    Best wishes

    VGama

  • bdhilton
    bdhilton Member Posts: 846 Member

    Hey VG... I'm as busy as a one arm wallpaper hanger....

    We've build a lab for tissue culture (plants) and have been playing with growing gourmet/medical mushrooms, which has proven to be successful and we're ready to commerical produce...just need a market...lol

    We've got our 10,000sq ft garden full of produce too...

    I understand that they are now using cyberknife as a norm for low grade PC at UCSF. They wouldn't have offered it to me 14 years ago, based on my aggressive cancer... I've had zero issues with my complicated cyberknife treatments and I'm a little less than 5 months out from my treatment...

    I feel good and blessed for sure... 67 years old and the only maintenance drug I take is Liptor...we will see what time brings...

    I hope all is well with you and you still enjoy tending your fruit trees...as always, I sincerely appreciate your insight and time helping me along my path...

    All the best-BD


  • lighterwood67
    lighterwood67 Member Posts: 374 Member
    edited May 2022 #60

    Sounds like a plan. From the boat ramp.


  • bdhilton
    bdhilton Member Posts: 846 Member

    Update...It's been a wild ride the last few months. In July I ended up with a perforated colon from a trauma injury and two weeks in the hospital...just about killed me but I lived to tell the tale. The day they did my surgery, 21 acres of my farm burned. Lost lots of fruit trees and old growth...last week I had a nephrostomy tube put in because my right ureter failed (I had water on my right kidney)...so now I'm urinating in a bag and pooping in a bag (they are putting me back together at some point), while I wait for UCSF to fix my right ureter from cyberknife damage ( my odds were 50/50 with the treatment (with no damage to my ureter) and resection to my bladder...my psa test last week was 0.1 and I'm talking with my radiologist tomorrow about the results...outside of that I'm feeling pretty good and blessed...