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NEED HELP- BS and need some help! 2-22-14, Added some CT Scan. Nerve Block on Friday, 3-21-2014

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Posted Yesterday 4:33 PM (GMT -5)
Hello my HW family. This past Monday, I had my full body bone scan since 10-2-2012 (first one). On 2-27-2014, I see my new medical oncologists for my 2nd appointment, as she ordered this scan and a CT on 1-30-2014, (on my first appointment) and ordered 6 vials of blood drawn. Called the nurse yesterday and my PSA was again 0.05. turn

My question is: If I copy my BS report here, (not long and if it's OK), would anyone help me to read it?

Next Tuesday, I get a copy of my CT I had done last Thursday at West Clinic.

I must admit, I read a lot and try to learn as much about my PCa, but just so much to take in!!


Thanks,

Dave in Bartlett, TN
Posted Yesterday 4:39 PM (GMT -5)
Can't help you read it but it's OK to post it if you want to. We probably have someone who can help with the confusing bits.
Posted Yesterday 4:49 PM (GMT -5)
PeterDisabelard,

Thank You, I will.

Dave
Posted Yesterday 5:06 PM (GMT -5)
Here is my full report. Thank You for all your help. I can also, type my 10/18/2013 full body scan. If anyone has the time and wants to help me, I can scan the other three body scans from day one (10-02-2012). Getting a copy of my CT next Tuesday which I had last Thursday.

CLINICAL INFORMATION: Prostate cancer

EXAMINATION: NM WHOLE BODY BONE SCAN 2/4/2014.

: 10/18/2013 (I also have this written scan).

RADIOPHARMACEUTICAL: 27 mCi 99m technetium MDP IV

FINDINGS: Anterior and posterior whole body imaging obtained, as well as spot imaging of the skull, chest, and pelvis. Mild uptake is noted within the right anterior 3rd and 4th ribs as well as the right posterior 5th rib. These foci are stable. The previously noted focus in the left femur has improved. Uptake at T12/L1 is stable. There is degenerative type accumulation in the mid cervical spine. Renal activity is symmetric.

IMPRESSION: slight improvement in lesion in the mid left femur. Otherwise stable sites of osseous metastatic disease.
Posted Yesterday 8:23 PM (GMT -5)
Hi grandpaof4.

How is your sense of well-being while you're taking these drugs? Sounds like you're in a heavy battle and there's a chance I'm heading that way.

What's it like?

If you have already discussed this, please point me to the thread.

grandpa of 2 1950-07-06
Posted Yesterday 9:54 PM (GMT -5)
Hello havanon,

Thanks for asking and so sorry you have to be here and having to start your journey!! You will be in my thoughts and prayers.

Can I get to the point??? There's no words in the English vocabulary to describe what I've been feeling and the pain since Oct. 1, 2012.

Heavy Battle, yes, that's about it!! But, just taking it one day at a time and having faith and hope in God that I'll live to be a ripe old age!! Daily, doing my best to stay upbeat (some days, it's hard).

Last week, I changed from an older male oncologists to a younger female. Last Thursday, I had my first appointment and she ordered lots of test including a CT and full body bone scan.

Here is the beginning of my story. This should give you some insight of my journey.

https://www.healingwell.com/community/default.aspx?f=35&m=2702406

Take care,

Dave in Bartlett, TN
Posted Yesterday 11:42 PM (GMT -5)
As a layman, that report looked pretty positive to me. Words like stable, improving, mild…..
Posted Today 12:07 AM (GMT -5)
Hi Dave,

Yup, I'm sure some knowledgable people here can help make sense of your reports, such as John T.

From what you've shown so far, it seems like things are going pretty well.

And you definitely have my vote to CONTINUE showing us good reports!! :)

Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, 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 a 0.2 cm length, doctor says this is insignificant.
Pathology showed Gleason 3 + 3, pT2c, N0, MX, R1
adenocarcinoma of the prostate.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, 9/9/13 PSA <0.1. PSA tests now annual.
Firm erections now briefly happening in early mornings, 2 years post-op.
Posted Today 4:05 PM (GMT -5)
Hi Dave.

You are so right to review the scan with a radiation oncologist.

The bone scan reports tend to be pretty vague and keep me out of court CYA. Urologists tend to not be able to read them much better than we can. So a radiation oncologist is the way to go, and have them point things out to you and your spouse in real time not just give you their synopsis.

My bone scan used generalities like multiple thoracic bodies and right posterior ribs with no quantification and both my urologist and my second opinion urologist assumed from that report that my body was riddled with treatable but not curative palliative only stage IV bone cancer.

As part of the application process for Univ of Florida & Shands Metastatic Disease program I had to answer a question of how many mets. With the help of a radiation oncologist I was able to determine that it was at most 5 and therefore I was Oligometastatic.

Many professionals still consider that uncurable but UF & Shands program treats it with curative intent.

A subsequent MRI showed that the spot that shown brightest on the bone scan was actually a benign hernaited disc with spinal compression that I never knew I had since I have no bone pain, nor any PCa symptoms for that matter, not even BPH nor hot flashes from the Lupron any more.

Since that was at T7&T8, I now only have so called mild metastasis at T4 and at T9. So at my medical oncoogist next week, going to ask if it makes sense to do whack a mole radiation now that I no longer have 3 adjacent lesions at T7-T8-T9 that precluded radiation.

Good luck with you new radiaiton oncologist.

LupronJim
Posted Today 7:29 PM (GMT -5)
Hi Grandpa, thanks for the link.

You are a fighter for sure. Sounds like you have a lot of pain and fear to endure. I am hoping for you.

You win, we all win. Hang in there.

Grandpa of two.
Posted Today 9:24 PM (GMT -5)
Thanks everyone for your support.

Today, I called and requested a CT which I'll pick up next Tuesday.

If it wasn't for pain in my lower back, right butt and right hip, I wouldn't have any pain at all. Would only be dealing with the HT SE!

Feb. 27, can't come fast enough! Hoping my new medical oncologist can address and treat my pain. Also, getting a tumor count (I know nothing about this procedure) and whatever else she can address!

If all goes well, my wife and I will be going to central FL next month for the GFMPH meeting hosted by sonny and his wife.

Everyone is in my thoughts and my prayers.

Dave in Bartlett, TN
Posted 2/8/2014 3:17 AM (GMT -5)
Hi Dave, that does look like a pretty good report. All stable, no new spots, no increased uptakes (which signalizes cancer activity). And even improvement on the spot on your leg bone. Seems then strange you are experiencing pain in the hip, as there is no mention of any hip lesions. Good report, congrats!
Posted 2/8/2014 7:29 AM (GMT -5)
SpecialLady,

Thank you for taking the time to address my BS.

My wife and I are also thinking it might be because there is Osteoarthritis. 2004, I had lower back surgery (L3-L4) and 2008, I had upper neck surgery (C3-C4, took bone from my left hip and fused it to my upper neck). The doctor had to cut through the front of my throat to preform the surgery and that was sooo painful!! Oct. 2012, my RO said I may need some spot radiation. Went to see him after my T-12 surgery (first week of Dec.), he told me I might need Radium 223. However, last Thursday, my medical oncologists told me I don't qualify because my PSA is still at 0.05 (has been for a few months now). However, she did tell me she could treat it with another medication. Hopefully, when I see her this month, she'll let me know what she plans on doing. This pain just drives me up a wall and consumes my every being 24/7.

I know there are people that's worst off and I shouldn't complain, but I'm just human...guess I just need to "SUCK IT UP"!!

You're dad is in my thoughts and prayers.

Dave in Bartlett, TN
Posted 2/8/2014 12:12 PM (GMT -5)
Thank you, Dave. It is really difficult to determine where all the aches and pains are coming from, especially when you had so much surgery on your back. My father has coxarthrosis in his hips, so we will never know, and the radiation oncologist told us L4-L5 spine is where MOST of degeneration of spine happens, so when that lights up, one can really not be sure. Make sure you make yourself comfortable and adjust the meds. When you are in pain, you heal slower. Prayers for your family.
Posted 2/9/2014 7:01 PM (GMT -5)
Dave,

the reason for the count of bone mets is that Univ of Florida & Shands has a Metastatic Disease progrm for treating Oligometastsis (<=5 bone mets - I think the term applies to lymph nodes too but in my case it's mets).

LupronJim
Posted 2/9/2014 9:43 PM (GMT -5)
Hi Jim,

Since I'm new to my PCa, I'm not really sure what "treating Oligometastsis" is. Can you please explain it to me. There's this lady in our church that has BC and she was telling me her tumor count is coming down. My oncologist told me that she was going to do a CLC on me.

Thanks,

Dave
Posted 2/9/2014 10:59 PM (GMT -5)
Hi Dave:

I am sure there are others but here's one thread I found when I did a forum search on Oligometastases

https://www.healingwell.com/community/default.aspx?f=35&m=2245716

Houseboy who started it is a bit of a celebrity having been featured by Dr Charles "Snuffy" Myers in an article that described how his mets totally disappeared. I jumped into the conversation on page 3 of the thread.

I think it's just a fancy name for catch it early and better chance of curing it, the theory being that if there are only a few mets not too closely together you can zap them without creating another Chernobyl if there are extensive bone mets.

With respect to the breast cancer patient's comment, comparing scans over time you look for less lesions and less intensity on the scan to see if the Lupron is truly shrinking the tumors, making the benefits exceed the side effects that in some cases are quite severe.

I am fortunate to now have no Lupron side effects other than the total absensce of a libido since the hot flashes have come and gone, also fortunate to not have any recurring pain like what you are having to endure.

LupronJim
Posted 2/15/2014 11:48 AM (GMT -5)
hi grandpaof4,
I saw this request last week but was unable to answer then. I am not a physician or nurse, but I do have 20+ years experience interpreting these type of reports. I completely agree with specialady's assessment. This is a good report. The metastatic deposits are still there but they are not getting any worse, and one is improving.

Be well...
Posted 2/15/2014 8:46 PM (GMT -5)
DanO,

Thank You so much for taking the time to respond to my request.

Will keep you in my thoughts and prayers.

Dave in Bartlett, TN
Posted 2/16/2014 1:19 PM (GMT -5)
The good news is that your psa is .05. Drs Strum and Scholz have found that if psa goes to .05 and remains there for at least 6 months it means that the HT is effective and indicates a significant survival increase from those whose psa nadir levels are above this level. Spot radiation to bones is a good way to relieve bone pain. A good reference on HT is Strum's "primer on Prostate Cancer" and his latest short book concentrating on advanced PC. He talks a lot about other tumor markers that you can talk to your oncologist about.
Good luck
JT
Posted 2/16/2014 8:04 PM (GMT -5)
John T,

Thanks and what does "nadir" stand for??

Thanks,

Dave in Bartlett, TN
Posted 2/16/2014 10:43 PM (GMT -5)
The lowest point. Opposite of apex or zenith.
Posted 2/17/2014 8:03 AM (GMT -5)
PeterDisAbelard,

Thanks, I'll look that up!

Dave
Posted 2/17/2014 3:43 PM (GMT -5)
Dave (grandpaof4),

Just wanted to join others in saying your bone scan looks good, and I am hoping the Feb. 27 appointment with the new oncologist brings good news and direction for your pain.  

When I read Lupron Jim's post, it remimded me of another case Dr. Myers had that I think was diffrent from Houseboy's. This one was about a combnation of HT meds. In this one, the patient's initial PSA was 61.5, a GL 5+4, and extensive bone mets. I believe he was first on Firmagon and Casodex that lowered the PSA to 0.15. Dr. Myers then changed the Casodex to Zitiga and then to a combination of Sprycel and Zitiga...this was a stretch Dr. Myers said. With this last combination all of the bone mets disappeared in a few months. Myers says the combinations are very complex and this was just one case.

Your scan was good and, as John T said, your PSA at 0.05 is very good news. So, point is, your combination of meds may be the right one for you. Will be interesting to see what the new oncologist says. I would make sure she discusses combinations and the whys for each. Lastly, I tend to agree with you and your wife that your hip pain may very well be Osteoarthritis.

Best to you on Feb 27!!

 

Posted 2/18/2014 7:00 AM (GMT -5)
Time101,

Thank You so much for your input. This afternoon, I may post parts of my CT that I also had last week.

Dave
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