I’m just trying to get a sense of what’s ahead of me based on what I know, so far (detailed result below).
I got my biopsy results (Gleason 8). My bone scan does not appear to be good news (osteoblastic metastasis on left femur). My CT scan is tomorrow.
I have not spoke with my urologist or an oncologist yet, I will do that once I get my CT scan results.
Also, does anyone have experience with Memorial Sloan Kettering Cancer Center in New York? A friend recommended them and I’m told they are one of the best in the country.
Results
Prostate Biopsy, site 13 “region of interest”:
- Prostatic adenocarcinoma, Gleason score 4+4=8 (grade group 4).
- Volume: Three foci of prostatic adenocarcinoma are present, the largest focus measuring 1.5 mm in greatest dimension. Prostatic adenocarcinoma comprises less than 5% of the two needle biopsy cores
Bone scan results:
Discussion: A focus of increased tracer uptake is present in the left femoral shaft, between the proximal two thirds and distal one third. There are no foci of abnormal tracer uptake elsewhere in the skeleton. There is normal activity in the urinary tract.
Impression (x-ray)
Faint sclerosis, which may reflect an osteoblastic metastasis.
Written by
Rondief
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Sounds like you would be in an "oligometastatic" state. In terms of metastatic prostate cancer, it's good that you only have one lesion currently. Especially that the lesion is within the pelvis. If there are no other lesions, this would indicate that you still might have a chance to get this completely under control with the right meds and possibly some radiation.
It's good that you are getting a PET/CT scan since bone scans have very low specificity and sensitivity. Based on the research, it would be good to either get your prostate removed or radiated as it boosted survival in this study thelancet.com/journals/lanc....
Getting rid of the prostate ****could**** also help debulk the cancer and prevent faster reseeding and metastasis. Although this is not proven conclusively through phase III trials and only now do they have trials ongoing. I think in your situation they are most certainly going to have the prostate removed. It's going to be your decision to either radiate or have it removed.
Thanks Barron, since I’m new to this game, that’s the kind of feedback I’m looking for. For what it’s worth, the link did not work it took me to an error page. Thanks again
My dx was similar. I had imrt radiation to my prostate but was told I had to be in a clinical trial to get that because insurance doesn’t pay because standard of care for newly diagnosed mPCa patients doesn’t include RP or RT to prostate due to long term thinking that once the cancer has escaped the prostate to distant mets then there is no benefit to removing or radiating prostate. Horses out of the barn, etc.
Huh, thanks for your insight. It sounds like the insurance company is making the decisions that you should be making. Just curious, how long ago was this and how are you doing now?
You'll find someone who will do it, trust me. They will write it up right. Even if there was no benefit to mets of removing the prostate, the long term benefit is reduced symptoms from the expansion of the prostate into the bladder wall.
If you start doing your own research, you would be considered "low burden disease" based on what you typed here. There is a pinned post on here about what web sites to go to to get free research articles. Just look at the pinned post "how do get free research articles".
Dx July 2, 2018. Immediately travelled to MDAnderson for 2nd opinion and ongoing care. Sloan Kettering is also top notch and if it’s economically and physically possible for you I would go there and depend on them, and yourself, for your ongoing care.
I just completed 6 weeks of IMRT and 7 months of ADT and I feel fine. I also feel that my treatment plan is the best I can do based on what I know now but that can change based on what I’ve learned on this site. If you’re the type who is content leaving it up to your docs then SK is a good choice. I do my own research and constantly challenge my MD Anderson docs and have got them to agree with midifications to my treatment plan which I think are best for me.
It seems that you are oligo metastatic. Radiation to the primary tumor has a survival advantage in oligo metastatic patients according to the STAMPEDE trial.
I wanted to point out that your bone scan does not say you have a metastasis on your femur. The bone scan/X-ray shows a "faint sclerosis" which may reflect an osteoblastic metastasis. This may as likely be due to an old bruise on your thigh bone from an accident years ago. This bears further investigation, but you seem to be getting ahead of yourself.
It's always a good idea to send your biopsy slides to Epstein's lab at Johns Hopkins for confirmation:
I had a similar gig three years ago and went through surgery radiates and hormone treatment but alive and doing well. Keep happy ang get a second opinion under any circumstances as there varying schools of thought.
Nalakrats, thanks the info. I had 14 total needle biopsy’s, all showed nothing except for site 13. I’m 3 hours from NYC, depending on what the docs say, it may be worth the trip. Thanks again.
3 hours away is nothing... I've seen patients there from around the world. If you want the best treatment(s) go to MSK. I'm a patient not a spokesperson.
From your prior post and the info in this one, it seems that your biopsy was MRI guided -- 12 standard cores and 2 into the area of interest. 5% is low, but the biopsy does only sample the prostate and may not indicate the true tumor volume. My 5% at biopsy became 15% from surgical pathology. What were the Pattern 4's in your GS8?
Others have given you good info regarding the bone scan. Since you were on active surveillance, you may have already been researching all of your options for future treatment.
I may have missed it but you don't say where you are located. I am in East Tennessee and was diagnosed with PC 4 years ago. Did a lot of research and decided on Provisions Proton Therapy in Knoxville TN. Have been cancer free four years now. Find a Proton radiation center near you and talk to them. They will tell you whether they can help or not. The treatments are non-invasive and I had no noticeable side effects. Sure glad that is the route I took. God speed in your journey and decision making.
I'm in Lancaster Pa, the heart of Amish country. John Hopkins in Baltimore is 1-1/2 hrs away, Sloan Kettering in NYC is 3 hrs, and Cancer Treatment Centers of Am in Philly is 1-1/2 hrs away. I'm surrounded by some great facilities.
Adding to my post above. John Hopkins is a great hospital also..
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 05/30/2019 5:34 PM DST
It is good that you had a nuclear bone scan as a baseline line maker and an upcoming soft tissue CT scan. My opinion will certainly be in the minority of this group; however, considering that a Gleason 8, is it (4+4), ((5+3), or (3+5)?..... a Gleason 8 is nothing to overlook and is indicative of future distant metastasis. Your Urologist has done his job; leaving surgery as an option or future hormone injections. If I were you, I would see a Radiation Oncologist looking toward seeds and external radiation to kill your prostate. But surgery is a viable option. It may or may not work. In which you are bound to end up with a Medical Oncologist.
Which ever you see, insure that they are a real pro; one who specializes in disease of the prostate; not a generalist who also treats other unrelated cancers. You want someone who is well read with years of experience in this specialty. Again, not one who treats other cancers.
A topic of discussion should include “micro-metastasis” - the unseen minute cancer cells traveling through the vascular and lymphatic system looking for a place to land and grow in far away spots in your body.
Me? In 2004, I went the route of early and aggressive systemic treatment after my primary treatment failed. It is not the normal path taken and in most places, given our current “standards of care”, not available unless you are in an academia and research setting. My decision was simply to kill the bastard while my body was strong, tumor burden minimal, and I had no co-morbidities.
Each of us will have a different degree of disease and physicians who differing thought processes. As a result, you will hear what they did. What really counts are the numbers and corresponding scans.
Don’t panic nor worry. Be concerned and tackle the problem. I write as someone who started in 2004 as a Stage 4 with distant Mets and able to stop all medication six years later and still remain <0.1 or undetectable in my quarterly blood draw results.
Thanks, I'm not panicking, I am concerned, and I'm trying to educate myself based on others and not what I find on Google.
After todays CT Scan I'll sit down with my urologist and he'll point me in a direction. It will probably be towards one of the doctors in his group, but like you said I want a prostate guy not someone who does a little bit of everything.
FWIW, I had an RP/PND at MSKCC last Sept. I'm with Tall Allen on this--presumptive met MAY be no big deal. I'll have to look up who read my MRI--they saw suggestion of extracapsular extension, which was NOT confirmed in the surgical specimen. Radiologists do their best, but sometimes I think they're trying to be a little creative. There are at least 2 other instances just in my family where a radiologist's reading scared the hell out of us for what turned out to be no reason.
I was diagnosed with metastatic PC a bit more than 7 years ago. I am treated at MSKCC and have been more than pleased with the doctors who have treated me and the treatment I have received. I was treated by Dr. Howard Scher for the first 5-6 years, but he no longer sees patients, so my case is now handled by Dr. Dana Rathkoph. I did have my prostate removed early on (which was very unusual at the time for those with metastatic PC- but I believe has become more common these days). I also had a session of radiation in one area 5 years ago. And- I was initially treated with ADT on an intermittent basis (sometimes with Zytiga) and I am now on continuous ADT, but I am no longer taking the Zytiga. I wish you and the others reading this, all the best.
There's some good commentary from the usual assortment of passionate / compassionate people who have insight and experience in the disease and various treatments. For what it's worth, I'm not a big fan of RP - too many cases of something that got missed while they were TRYING to get it all out.
Hopefully, further testing will show you the current state you are actually living through.
IF it is possible (I'm a G9 and undetectable post treatment 2 yrs since my Dx) some form of radiation and possibly some ADT for 12 - 18 months might be the aggressive route to go.
Based on what I've seen and read, early and aggressive intervention has become more common, with encouraging results to match.
Certainly, don't panic and don't RUSH - there's lots of road ahead of you and you need to make the best decision for yourself and your loved ones.
I'm sure I speak on behalf of all of the 'brotherhood' - we wish you well ......
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My 18 month follow up scans...........except for the jaw infection and subsequent redo of a failed root canal, which is painful, not bad.
Other Gleason 8 guys, I see in studies, research and in on going trials, Radical Prostatectomy shows better over all survival
advice request with regards to SRT/similar post-op RP treatment
