Advanced Cancer and waiting...

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

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

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.

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

Sounds like a plan. From the boat ramp.