In addition to my Gleason 9 and PSA of 18, I have a metastasis on the right pubic bone, discovered by a nm bone scan on Thursday, and am going for chest, ab, pelvic scan today to see if that is the only other site.
I met with Dr Cheetham from Mt Sinai because I was waiting and waiting for appointments with both NYU and MSK and getting nowhere for a few days. She started me on Casodex and wants to give me a Lupron shot this week. She also wants me to meet with Dr Tewari and Bobby Liaw of MT Sinai. Additionally she will bring in Dr Shasha of MSK as an RO.
Does anyone know of Dr Cheetham, this will be very helpful. Also Tewari, and is having practitioners from different hospitals not a good plan
Now to the other Docs.
Additionally, yesterday, I finally got to see Dr Tenaja at NYU after weeks of waiting, he wants a pet scan.
While waiting I was also able to get an appt with 2 docs at MSK, Zelefsky on Dec 23 and as of yesterday an MO Dr Autio on Dec 21.
I was and am concerned about how much time is passing since discovery in early Nov so I continued to reach out. It seems they are all talking about LTRT and ADT, although prostatectomy has not been ruled out
Sorry for the rambling. I will try to answer all in time today but a lot going on, so thank you all in advance for your help and making this site a helpful place to be
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Grateful4this
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Hi - you should be concerned. We had the same problem. We live close to a major cancer hospital in Ohio. There was a 6 week wait to meet with an oncologist. We made a couple calls and complained to a few VIP's and got in sooner. We also made appointments at the Cleveland clinic and talked to several physicians. Talk to as many doctors as possible. Prostate cancer is BIG biz. Adding up a 2.5 years of spending.... we are close to $1,000,000. Our care now... My husband has aggressive PC.. we are handed off to NP's and see the MO maybe every 2 months...(we are at the hospital every 3 weeks) I'm assuming you live close to NYC. There's a lot of scans,(CT's, Bone Scans, PET scans, MRI's) blood tests and office visits. Find the best place for you knowing that you might be there often. My husband started with a 29 PSA and has aggressive PC. He's 60... How old are you? I hope you find a really good MO! Good luck to you!
Dr Cheetham is one of the most empathic, up-to-date and skilled urologists on earth. Malecare was fortunate to have Dr. Cheetham as our Mistress of Ceremonies for the 2019 prostate cancer patient conference. Dr Tewari works with Dr. Cheetham, though, as a former patient of his, I am significantly less impressed by his doctoring. His reputation is stellar, but my real world experience with him, much less so.
Dr. Zelefsky was my Dad's radiation oncologist (he died from his prostate cancer in 2005). Dr. Shasha helped found Malecare, back in the late 1990's. I have high respect for him and know many of his patients do, too.
Darryl, your comments are extremely helpful although the negatives are disappointing . Not sure if the site allows you to elaborate but feel free if you can and want. Thank you again
I think all these cooks may spoil the soup. They are all excellent doctors with different specialties. The Lupron will keep everything in stasis for quite a while. At some point, however, you have to decide who is calling the shots.
Because you are "oligometastatic," SBRT to the prostate is certainly a good idea. You can also have them zap any metastases wherever it is safe to do so.
But the mainstay of your therapy is the Lupron + advanced hormonal therapy (Zytiga or Xtandi or Erleada). I would also discuss docetaxel at the same time, as used in the ARASENS (with Nubeqa) and PEACE1 (with Zytiga) trials (not yet published).
I agree with the too many comment but when the first referral was not responding quickly I had to seek out others . It seems so of your thoughts and comments are in advance of some of my discussions with these doctors so I am grateful for your input.
I agree with TA, each of these doctors will have a different course of treatment and will only confuse you. The casodex and Lupron is a good first line of treatment. Your next concern is is the bone met. Is the casodex and Lupron do not put it in check, radiation would be the next step.
You are certainly on the right track by getting as many opinions as possible. I am 8 years out now from surgery, radiation, and I am now doing both Casodex and Zoladex (goserelin). The PET scan is an excellent idea. The scans have gotten so much better over the past 8 years or so. From what I have read, the PSMA scan is the best because it targets PCa directly, but be sure to consult with your doctor about this.
Has anyone talked to you about the side effects of ADT? Make sure you know what to expect. Casodex and Lupron can both cause breast enlargement (gynecomastia). If this is of concern, you may want to ask about "spot radiation" or drugs that can prevent this.
wish I had seen this sooner; TA is right--put someone in charge and go with that plan--or possibly get 2 opinions and see if similar or ask why the difference.What have the other scans shown? or do you know yet?
Are you SURE that the place on pubic bone IS a metastasis? My husband was Gl 9, stage 4, high risk, aggressive Pca. One of his scans also showed spot on right pubic bone; however, when he had an Axumin PET, which is just for prostate cancer, there was no uptake by that spot, so radiologist said it was a "bone island". Also, none of the other many scans he had showed any uptake.
"a bone island is a benign entity that is usually found incidentally on imaging studies; however, the bone island may mimic a more sinister process, such as an osteoblastic metastasis (eg, from prostate cancer)."
So, before you have any treatments that might be unnecessary, make SURE it is a metastasis, or HOPEFULLY NOT!!
take a deep breath --everything will fall into place before you know it. This is a great forum with lots of knowledgeable and very helpful people.
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