Confused! Recently diagnosed with prostate cancer
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Was just reading through this post and want to thank all that have responded.
I noticed that a few of you have recommended a PSMA PET scan. When I spoke with the doctor at Fox Chase I asked him about that. He told me he would order it, but thought it unnecessary in my case. He did order a whole body NM bone scan which I'm going for this coming week. Any opinions on the differences between these scans? And if the PSMA PET is much better, I'm now wondering why not have ordered that? I should have asked at the time, but didn't think to. I'm guessing it's still an option if I request it.
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Like almost everything in medicine, the issue is probabilities. The chance that finding something 'new' with the PSMA scan is small, but not zero (it never is). This scan is relatively new (maybe five years now in this country) and thousands of patients (including me) have undergone treatment without ever getting a PSMA scan. I do think that this type of scan is more important when there is evidence that the cancer is close to the edge of the prostate. I don't see info on that in this thread, but maybe I just missed it. Here is a summary from a respectable source:
Is PSMA-PET right for every prostate cancer patient? Any time a new treatment or detection method is approved it is always very exciting news for patients across the board, but not all of these are right for every patient. This current FDA approval is for two main groups of patients, according to Thomas Hope, MD, a PCF-funded researcher and one of the leading investigators in PSMA-PET: “in high-risk men before treatment with prostatectomy or radiation therapy, and in men who have already been treated for localized prostate cancer who have a rising PSA.” So, these are patients who may have metastases, and the purpose of the scan is to find out whether distant disease is present, and, if so, where it is.
Notice the emphasis on 'high-risk'. Finally, it is known that there is a subfraction of prostate cancer cells that do not express (much) PSMA. If that is the case a PSMA scan won't reveal much of anything.
Good luck with the decision process!
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My doctor at Cleveland Clinic ordered a PSMA Pet Scan to determine if the cancer had spread outside the prostate. If it hadn't spread, they would go ahead with radiation treatment. You are injected with a radioactive tracer that (to my understanding) attaches to prostate cancer wherever it is in the body and shows up on the scan.
When I received the results it said the cancer had spread to the prostate bed. When I questioned the radiation oncologist who ordered the scan he said it had NOT spread. Apparently the technician that read the scan results thought I had already had my prostate removed (I didn't). The oncologist said what the tech was seeing was the cancer IN the prostate. Obviously I was disappointed with this mistake because so much was riding on the results.
The radiation oncologist OK's me for radiation treatment along with ADT (androgen deprivation therapy). I completed the radiation at the end of June 2023 and am due for the third 6 month ADT (Lupron) injection in early April 2024
Good luck with your decision making process - It is a stressful time. I hesitated for a few months before my urologist simply said - "You have to do something."
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Thanks Old Salt! So many idiosyncrasies. It's difficult to decide on anything. I'm fairly certain the urologist oncologist at Fox Chase knows what he's doing. I did complain of back pain and fatigue which I guess why he ordered a NM bone scan. Evidently it too will show metastasis.
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Update for anyone interested,
Had a consultation today with Radiologist Oncologists at Fox Chase Cancer Radiation Center Buckingham located in Furlong, PA. Again, as with the Fox Chase Urologist Oncologist appointment last week in Philadelphia, I was very much impressed with their facility and professionalism. They spent over 2 hours discussing and examining. Including two Digital Rectal Exams by two doctors. Woohoo! Lols! They were not pushy in any way but are initially recommending some variation of EBRT. They'll refine their recommendation after bone scan, colonoscopy, and more discussion. They showed me the MRI images where my tumor with 4+3 is contained but is right up against the right wall of the prostate. The docs said they could feel a slight anomaly with the DREs. They confirmed what two other docs have told me that they do not believe it's out of the gland. I asked their opinion on IRE nanoknife focal therapy. They didn't dismiss it totally, however suggested that because focal therapy only zaps the tumor area other possible cancer cells might be missed. At this location they more typically use focal therapies for salvage procedures. They recommend treating the entire gland. Kind of a grey area for me. At 67 I don't like the odds on RP side effects. I really like the idea of the IRE nanoknife which seems to be gaining more acceptance, however hasn't been studied enough yet for long term data for mainstream application. The doc at FC Philadelphia offered it as a possibility. The lesser side effects are very attractive, but IF it isn't as effective long term as Radical Prostatectomy or Radiation Therapy, (which are about equal in effectiveness) is it worth taking the chance? Geez! I'm only beginning this journey. I don't know how some of you guys that have been intensely fighting this for a long spell keep you sanity? I already feel like I need a secretary to deal with all the information, logistics, and insurance bull crap. 😓 If the big C doesn't get me, I'm going to have heart failure from stress. Lols! Anyhow, tomorrow I get the bone scan. I'm crossing my fingers it comes back clean. Then more discussions. It's already been two months since my diagnoses. All the docs I've spoken with say I have time, but seems to me like the Simon and Garfunkel song "The Sound of Silence" "Silence like a cancer grows".
Writing on here is therapeutic in a way. Thanks for all of you that have responded to my ramblings thus far. 😀
P.S. I didn't even mention that I've cut out my beer drinking! 😥
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Im stilling waiting for treatment after 7 minths with an aggressive form of pc ..im getting pissed think that I am a money maker for them. Why would I need a PSMA scan And then another chest ct scan to wee id the rib lesion was benign and then an MRI why i ask an mri thought the new a PSMA scan is so good and it showed no spread outside the prostrate and then another scan to see if the little land then a biopsy,why a biopsy you know the catcher back you know it’s at least 34 wanted to see if it was gonna be 33 and I even said that’s not gonna happen and it didn’t now it’s 4 4 and then a meeting with a radiologist and then a meeting with a cryotherapy dr and then a meeting with urologist to help me decide what treatment would be best. Radiation surgery or cryotherapy. Now trying to get an appointment with dr who do the cryotherapy who now I think is backed up two or three months because he’s old and he only does him on Wednesdays so I’m not waiting another two or three months that’ll be almost 10 months after I was diagnosed borderline. Unbelievable and unacceptable.
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Hey man I know exactly what you are going through. Bottom line I opted for surgery. My cancer was stage 2, which means it was localized to the prostate. My Gleason was 8 (4+4). So my cancer was primarily on the right side and at the base of the prostate. That region was about 88% occupied. So my PSA was above 4 for about a year. The doctor suggested we monitor it for another 6 months. I wasn't comfortable with that so I asked to have the next test, whatever it was. It was an MRI. The MRI showed a spot of concern with a PRAD rating of 4. 4 or 5 is likely cancer. Next step was biopsy. He took extra samples based on MRI. All 6 of those samples came back positive for cancer. Next step was PET scan to check for spreading. My cancer was local and there was no signs of spread outside the prostate. So I only had 2 options for treatment 1) surgery or 2) radiation. For my type of cancer, the probabilty of recurance was about the same. The probability of side effects were also about the same except surgery add a side effect with damage to your pooping function. Ultimately what drove my decision for surgery was Plan B. Since my recurrance rate was high I wanted to know what plan B was. For surgery there is a legit plan B - radiation. With radiaiton there is no real plan B. I asked my surgeon if he had ever done a post radiation prostatectomy. He said yes - ONE. He said he would never do another. Yeah, they are super complex and loaded with side effects. Cryo is also a weak plan B and also loaded with side effects. So there really isn't a legit plan B with radiation. I looked at ultrasound which is the newest thing however they don't have more than 5 years of success data on those procedures. They are also very selective with patients because they don't want to treat cases that will negatively impact there success data. These procedures are also not covered by insurance yet. So, I suggest not only looking at your primary treatment option, but look at plan B. If you have a high rate of recurrance like me then plan B becomes a significant part of the decision process. I am 7 days post surgery. Catheture comes out next week. Hoping my biospy results match my PET scan results and that cancer is a distant memory. Good luck my brother and hope this info helps!
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Thanks fjubier,
David Chen MD and Andres Correa MD were the two docs involved in the clinical trial (PRESERVE) at Fox Chase. I believe they are no longer recruiting for this study, but the procedure was offered to me as a possibility. I was told I am a likely a good candidate, but would have to have an additional biopsy prior to verifying that. Not sure if insurance would cover the cost?
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Yeah, this waiting game is stressful! I was thinking yesterday while speaking with the docs at Fox Chase, the MRI they were referencing from was already two months old. They all keep telling me I have plenty of time to decide. All the docs I've dealt with are obviously really smart individuals, and I've got to put some trust in them, but from my laymen's perspective, the cancer is alive and growing. Seems like time is of the essence.
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Had a consultation today with Radiologist Oncologists at Fox Chase Cancer Radiation Center Buckingham located in Furlong, PA. Again, as with the Fox Chase Urologist Oncologist appointment last week in Philadelphia, I was very much impressed with their facility and professionalism.
Is all radiation done at the Buckingham site? That's well away from the Philly site, I know.
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Yeah, I agree with your plan B philosophy. That's why I have been so attracted to the focal IRE nanoknife. I believe all other modes of treatment afterwards are possible including re-treatment, but the big question is how effective is it at nipping cancer in the bud? Because of treating a smaller area, perhaps any spread could be more difficult to contain at a later time. I will be asking more about this at my next appointment.
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No The site at Buckingham is a satellite location. I believe they have four radiotherapy locations in the greater philly area. The one in Buckingham specializes in radiation and genetics, possibly chemo but not sure. It's a fancy facility with high tech machines including a Cyberknife. I don't know for sure but suspect surgeries are done in the facility closest to the city.
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Seems like some of these fellas on here been through plans A thru Z and back around again. 😥 I guess we all hope our plan A works out. I'm coming to believe we can only make the best choice we can at the time and hope for the best. My stepfather used to say you have to play the cards you were dealt. He became severely handicapped from Multiple Sclerosis and was able to keep a positive attitude throughout his entire ordeal.
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TULSA can be used on the whole gland and has a legit Plan B with almost all options available for salvage therapy. However my surgeon told me that all the TULSA procedures being done in this area (UTSW hospital) are being done along with radiation. So it didn't make sense to me to opt for TULSA if I had to add radiation. TULSA is also not covered by insurance. The cost was going to be $30,000 and that did not include the cost of radiaition.
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Anything is possible if you are willig to deal with the side effects.
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Welcome to the realization of why we call our time with PCa (or any other cancer for that matter) a "journey". Once you come to this realization, you can more effectively cope with your evolving situations and make less stressful and better decisions regarding your PCa journey.
The final transition to peace of mind on a PCa journey is to look only at the present and future. The past is prologue, and dwelling on it adds no value whatsoever to your PCa journey. Quality of life should now be one of your main driving forces on your PCa journey.
Your stepfather came to this realization, and I wish you the best of outcomes on your own PCa journey.
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