Confused! Recently diagnosed with prostate cancer
Comments
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Just got my whole body NM Bone Scan results. Copied below, I'm not sure if it's good or not? Seems like this test shows arthritis as well as other bone anomalies? I found it odd that it did not show anything in the lower spine. I've had chronic lower back pain for several years and even had a diagnoses via x-ray indicating osteoarthritis of the lumbar spine. Anyhow, I won't be discussing with a doctor for a while. Anyone really understand these results?
Results
No evidence of bony metastases. Asymmetric mildly increased uptake in the right side of the manubrium, and in the left axillary soft tissues. Plain film correlation is suggested.
HISTORY: Low back pain. Prostate cancer diagnosed in November, 2023. Assess for metastatic disease.
COMMENTS: A whole-body bone scan was performed following intravenous administration of 30.0 mCi of technetium 99m MDP, in anterior and posterior projections. Additional coned-down oblique views of the chest, abdomen and pelvis, anterior and posterior views of the chest, and both lateral views of the skull and cervical spine were obtained.
There is asymmetric mildly increased uptake in the right side of the manubrium. Sternal plain films are suggested. There is mildly increased uptake in the carpometacarpal joints of both thumbs, almost certainly degenerative in nature. There is a focus of asymmetric increased uptake in the left axillary soft tissues. Plain film correlation with a chest x-ray is suggested. There is no abnormal uptake in the lumbar spine. There are small foci of increased uptake in both knees, almost certainly degenerative in nature. There is normal bilateral renal uptake.
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New to the forum today. My initial diagnosis was similar to yours. PSA of 5, leading to prostate biopsy where they detected cancer in 4 or 5 samples in early November of 23. Gleason of 6 and 7, but with no indications that it had moved outside the prostate. He also sent of a sample for DECIPHER testing, which came back as a 0.3, which is in the low risk range. This DECIPHER test is supposed to be an improvement on the Gleason scoring., and helped the urologist decide that I did not need to have hormone therapy. The urologists next step was to have me do a PET scan to check for metastasis to my bones. He told me this was a standard step to determine the next course of action. I'm pretty surprised that your doctor is reluctant to do it.
I opted for CyberKnife treatment which ended up being five 15 minute radiation treatments, which ended 3 weeks ago. Very minor side effects to this point. I am now waiting for my follow up in March.
If you are near Trenton then the best two options would be Fox Chase or U Penn. My wife had surgery for bladder cancer at U Penn and we were really impressed with the standard of care there.
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Thanks BeardofStars! I've heard good things about U Penn also, I went to Fox Chase because of their recent study of the IRE nanoknife a focal therapy which I am considering. The doc (oncologist surgeon) did offer a PSMA PET scan if I wanted it, but thought it unnecessary. He did order a NM Bone scan which appears does not show any metastasis. Was your scan PSMA? Was it difficult for you to decide which first course of action to choose? How long was it between your diagnosis until treatment began? Did you have a gel barrier? If so what was that like? I hope your follow up in March is a great one! Sorry for all the questions!
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I had my first PSA in March 2023 which was 4.8 and then another in September which was I think 5.2.
Biopsy was on 10/31. I thought it was PET but now looking over the description I think it was a bone scan. I had an injection and then went back about 4 hours later for the actual scan which took about 45 minutes. If I was confused over terminology then I apologize.
Next step was the insertion of the gold pellets into the prostate, slightly more uncomfortable than the biopsy. Then an MRI and a CT Scan a few days later on December 18th.
The radiation treatment started on December 26th with four sessions that week and a fifth one on Jan 2nd. I did not have the gel barrier. I was put on a 'low gas' diet and had to have a dose of miralax the night before each treatment and also do an enema 2 hours before my appointment and also drink 20 oz of water 30 minutes prior to the appointment. Treatments were an hour away and I drove myself there and back with no issues.
Just prior to the treatments I started on Flomax and am still on it now though I may try to get off it soon (I don't like taking medications). As of today, 3 weeks after the last treatment, I am experiencing some minor bowel issues. What was previously a once a day event is now twice daily. :)
When first diagnosed my urologist offered two options, surgery or cyberknife. He said that for my cancer both options were equally as effective. He recommended surgery at the Mayo Clinic in Jacksonville FL or Cyberknife in Brunswick GA ( I spend winters in south-east GA and summers in PA). A friend had just gone through surgery and I had had talked to him about his experience, he was hospitalized for a few days and catheterized for a couple of weeks and then had issues with incontinence for a while afterwards. Given the urologists comments on being equally as effective I was definitely leaning towards Cyberknife. I met with the radio oncologist first and really liked him, and didn't even bother meeting with the surgeon. Decision made.
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Just a clarification. Biopsy was 10/31. The bone scan was mid November.
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Wow! Less than two months from detection to treatment seems fast. I wish I could be as decisive as you. May I ask your age? The side effects from both surgery and radiation worry me. I'm considering focal therapy which may be an option? Cyberknife, having a shorter course of 5 sessions sounds much better than 8 weeks of IMRT. I'm uncertain as why one would choose the longer course if they deliver the same results safely? I'm not sure, but sounds like you had a NM Bone Scan. I had to wait three hours after the injection until getting on the machine. I think I read where the PSMA PET a similar a procedure, but not have to wait as long after injection? Maybe someone on here will explain. My understanding is the PSMA PET is more sensitive that the NM Bone Scan. Both can show metastasis and both can show false positives. The urologist oncologist surgeon at Fox Chase told me he could order a PSMA PET scan, but thought it unnecessary. He said the NM Bone scan would suffice in my case. I have been experiencing chronic back pain the last couple of years and was paranoid that it might be the cancer. I think he ordered the bone scan to put my mind at ease? I'm just guessing, but imagine the PSMA PET scans are more helpful in finding cancer in higher risk cases and I'm also guessing they cost more?
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Hi, swl,
According to the copy of the bone scan you posted above, they haven't found bone metastasis. This exam complements the MRI and any DRE that together with the biopsy should be enough to draw a decision on your status. In fact, this has been the way of "the old school" practice by doctors to recommend treatments in prostate cancer.
The 68Ga PSMA PET/CT exam would add more information as it identifies PCa involvement in soft tissues that a technetium-99m bone scan wouldn't do. In any case both exams are exceptionally the "state of art" of exams recommended in cellular investigations, which we didn't have ten years ago.
Best wishes in your continuing research and journey.
VG
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I'm new to this forum. I'm Paul, 68, good health with the exception of type 2 diabetes which is under good control and now prostate cancer. My PSA in Sept had gone to 5.1 from 4.2 in April. Urologist offered a transrectal biopsy saying "you won't know unless you have it done" I did (have it done), and I do (have cancer). Gleason 7. They found cancer in 5 of 12 test sites with 2 sites being 3+3 and 3 sites 3+4. Doctor ordered a PSMA Pet Scan, which I scheduled today for the 20th. of next month. Like everyone faced with this crappy reality, I want the best results with the fewest side effects, oh, and I don't want to have to pay for it. I'm on a medicare advantage program, so I'm pretty sure my options will be very limited. I could be convinced to pay $25k IF the final results justified it. Seems like the cutting edge treatments are a two sided sword (pun slightly intended), they promise the moon but have little long term evidence to back them up. I already have limited urine flow, and because of that my doctor suggested surgery. After researching the surgical proceedure, I don't think I'm going in that direction. It's very complex, lots of nerves, you lose the sphincter at the base of the bladder and have to learn how to hold your urine with a lower sphincter (let me know if I have that wrong). So, Radiation, but will I be offered different types/procedures? Will they shield my bladder? What happens to my urethra? Will my flow issue improve or get worse? I'm currently taking 2mg twice daily of Terazosin which takes care of my flow issue, but will that work after radiation? There is laser, ultrasonic, focused radiation and I just read your post here about Nano? I'll have to research that now. If any of you know what medicare covers with an advantage plan, I'd love to hear it. Oh, and I'm in Southern California. No shortage of doctors and facilities here. With enough money you can get pretty much any proceedure you want. I really appreciate you guys sharing your experiences (misery loves company). Talking about it is cathartic, but there aren't too many people I know who enjoy the subject, so you guys are awesome, thank you. Oh, and I looked into current trials. I found 7 promising ones in my area, but the only two to reply said they aren't accepting new patients (aka guinea pigs ;-). That brings up another question. IF I had an experimental proceedure done, and needed a follow up proceedure later, would my insurance cover it?? Is it like modifying your new car and voiding your warranty. Like all of you, I have lots of questions. As I learn, I will contribute here as you guys already have. Thanks!!
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Hi Paul - welcome to the group
Last year, at 76 I went through 28 radiation treatments along with ADT (androgen deprivation therapy - Lupron). My Medicare Advantage plan covered over $250,000 for all my treatments. I maxed out my $3700 out of pocket expenses. You should check with your Medicare Advantage plan to get details on what will be covered.
I had IMRT (intensity-modulated radiation therapy) that allows the radiation oncologist to direct radiation to cancer cells while minimizing exposing nearby healthy tissue to harmful amounts of radiation. Each radiation treatment took less than 10 minutes. The hardest part was the request that you have a full bladder and an empty rectum for each treatment. Once into the routine that wasn't so bad.
The end result is that my PSA dropped from 20 to <.03 (considered undetectable) following radiation. I never had any urinary issues during the radiation and have been able to pee better than I have in many years ever since.
Five months following completion of radiation I have developed "radiation proctitis" - passing blood and mucus in the stool. It is minor (so far) but my doc ordered a colonoscopy (Feb 1) to make sure the irritation is limited to the part of the rectum that may have been irradiated. I'll post the colonoscopy results in a few weeks. My understanding is that this may be self limiting or may require minor treatment.
Again - check you insurance. You may be surprised how much they cover.
Best of luck in your journey.
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Paul: the currently best known product to protect the rectum is Space OAR. But it isn't always appropriate and should be inserted by individuals with a lot of experience.
Another, newer, spacer product is Barrigel.
Comparison:
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I'm 64. I tried to be as analytic and as decisive as I could be. A month before my diagnosis my wife got a breast cancer diagnosis. She has had to go through surgery and chemotherapy. I wanted to be capable of taking care of her so the decision for me was pretty easy to make. The option I picked was the least invasive with the best chance of recovery.
Everyone has their own criteria and I think taking as much time as you need to make the decision that is right for you is the correct thing to do.
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Sorry you have had to deal with both your wife's cancers and yours at the same time. Hope things are going in right direction for both of you. How soon will you know if the Cyberknife was successful? I'm guessing you'll be having a PSA test in a few months?
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Everything seems to be going well at the moment, thanks! Early March for the first PSA test post-radiation. I will post a progress report when I get the results.
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One will only know if a procedure was 'successful' if one dies of something else without further intervention(s).😊
With SBRT (CyberKnife is just an instrument) one can expect up-and-down PSA test results that should be significantly lower than the prior therapy result. A nadir may be reached after several months. Subsequently, one wishes for PSA test results that are less than nadir + 2.
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Update:
I thought I'd post my November 16th biopsy report (Perhaps some of you here might understand it better?) and also a recent Fox Chase radiologist's recommendation. The radiologist's assessment has me wondering if my hopes for the IRE Nanoknife is still an option? Three weeks ago a Fox Chase oncologist surgeon indicated I may be a good Nanoknife candidate after reviewing the exact same data. (MRI and Biopsy)
Final Diagnosis
A. Prostate, LEFT LAT BASE: Benign prostatic tissue. No tumor seen.
B. Prostate, LEFT LAT MID: Benign prostatic tissue. No tumor seen.
C. Prostate, LEFT LAT APEX: Benign prostatic tissue. No tumor seen.
D. Prostate, LEFT MED BASE: Benign prostatic tissue. No tumor seen.
E. Prostate, LEFT MED MID: Benign prostatic tissue. No tumor seen.
F. Prostate, LEFT MED APEX: Benign prostatic tissue. No tumor seen.
G. Prostate, RIGHT MED BASE: Benign prostatic tissue. No tumor seen.
H. Prostate, RIGHT MED MID: Focus of high-grade prostatic intraepithelial neoplasia (HGPIN).
I. Prostate, RIGHT MED APEX: Benign prostatic tissue. No tumor seen.
J. Prostate, RIGHT LAT BASE: Benign prostatic tissue. No tumor seen.
K. Prostate, RIGHT LAT MID: Prostatic adenocarcinoma (Gleason score: 3+4 = 7; GG 2) involving 90% of the tissue core.
L. Prostate, RIGHT LAT APEX: Prostatic adenocarcinoma (Gleason score: 3+3 = 6; GG 1) involving 7% of the tissue core.
M. Prostate, LES1 TAR1: Benign prostatic tissue. No tumor seen.
N. Prostate, LES1 TAR2: Benign prostatic tissue. No tumor seen.
O. Prostate, LES1 TAR3: Prostatic adenocarcinoma (Gleason score: 4+3 = 7; GG 3) involving 33% of the tissue core.
P. Prostate, LES1 TAR4: Benign prostatic tissue. No tumor seen.
Q. Prostate, LES1 TAR5: Benign prostatic tissue. No tumor seen.
TUMOR CORE MAPPING:
Location Grade Tumor size (mm)
Right lateral mid 3+4=7; GG2 9 mm
Right lateral apex 3+3=6; GG1 1 mm
Lesion 1, target biopsy 4 4+3=7; GG3 5 mm
Gross Description
A. Prostate, LEFT LAT BASE:
Received in formalin, labeled with patients name and medical record number and "Prostate, LEFT LAT BASE", are 2 needle core fragments of soft white-tan tissue (0.2 cm and 0.5 cm length, 0.1 cm diameter). All submitted in one cassette.
B. Prostate, LEFT LAT MID:
Received in formalin, labeled with patients name and medical record number and "Prostate, LEFT LAT MID", are 2 needle core fragments of soft white-tan tissue (0.4 cm and 1.0 cm length, 0.1 cm diameter). All submitted in one cassette.
C. Prostate, LEFT LAT APEX:
Received in formalin, labeled with patients name and medical record number and "Prostate, LEFT LAT APEX", is a single needle core fragment of soft white-tan tissue (1.3 cm length, 0.1 cm diameter). All submitted in one cassette.
D. Prostate, LEFT MED BASE:
Received in formalin, labeled with patients name and medical record number and "Prostate, LEFT MED BASE", is a single needle core fragment of soft white-tan tissue (1.3 cm length, 0.1 cm diameter). All submitted in one cassette.
E. Prostate, LEFT MED MID:
Received in formalin, labeled with patients name and medical record number and "Prostate, LEFT MED MID", is a single needle core fragment of soft white-tan tissue (1.7 cm length, 0.1 cm diameter). All submitted in one cassette.
F. Prostate, LEFT MED APEX:
Received in formalin, labeled with patients name and medical record number and "Prostate, LEFT MED APEX", is a single needle core fragment of soft white-tan tissue (3.0 cm length, 0.1 cm diameter). All submitted in one cassette.
G. Prostate, RIGHT MED BASE:
Received in formalin, labeled with patients name and medical record number and "Prostate, RIGHT MED BASE", is a single needle core fragment of soft white-tan tissue (2.1 cm length, 0.1 cm diameter). All submitted in one cassette.
H. Prostate, RIGHT MED MID:
Received in formalin, labeled with patients name and medical record number and "Prostate, RIGHT MED MID", is a single needle core fragment of soft white-tan tissue (2.0 cm length, 0.1 cm diameter). All submitted in one cassette.
I. Prostate, RIGHT MED APEX:
Received in formalin, labeled with patients name and medical record number and "Prostate, RIGHT MED APEX", is a single needle core fragment of soft white-tan tissue (1.6 cm length, 0.1 cm diameter). All submitted in one cassette.
J. Prostate, RIGHT LAT BASE:
Received in formalin, labeled with patients name and medical record number and "Prostate, RIGHT LAT BASE", is a single needle core fragment of soft white-tan tissue (1.2 cm length, 0.1 cm diameter). All submitted in one cassette.
K. Prostate, RIGHT LAT MID:
Received in formalin, labeled with patients name and medical record number and "Prostate, RIGHT LAT MID", is a single needle core fragment of soft white-tan tissue (1.0 cm length, 0.1 cm diameter). All submitted in one cassette.
L. Prostate, RIGHT LAT APEX:
Received in formalin, labeled with patients name and medical record number and "Prostate, RIGHT LAT APEX", are 2 needle core fragments of soft white-tan tissue (0.3 cm and 1.4 cm length, 0.1 cm diameter). All submitted in one cassette.
M. Prostate, LES1 TAR1:
Received in formalin, labeled with patients name and medical record number and "Prostate, LES1 TAR1", is a single needle core fragment of soft white-tan tissue (1.7 cm length, 0.1 cm diameter). All submitted in one cassette.
N. Prostate, LES1 TAR2:
Received in formalin, labeled with patients name and medical record number and "Prostate, LES1 TAR2", is a single needle core fragment of soft white-tan tissue (2.2 cm length, 0.1 cm diameter). All submitted in one cassette.
O. Prostate, LES1 TAR3:
Received in formalin, labeled with patients name and medical record number and "Prostate, LES1 TAR3", is a single needle core fragment of soft white-tan tissue (1.5 cm length, 0.1 cm diameter). All submitted in one cassette.
P. Prostate, LES1 TAR4:
Received in formalin, labeled with patients name and medical record number and "Prostate, LES1 TAR4", is a single needle core fragment of soft white-tan tissue (1.5 cm length, 0.1 cm diameter). All submitted in one cassette.
Q. Prostate, LES1 TAR5:
Received in formalin, labeled with patients name and medical record number and "Prostate, LES1 TAR5", are 2 needle core fragments of soft white-tan tissue (0.4 cm and 1.0 cm length, 0.1 cm diameter). All submitted in one cassette.
Below is written question I asked Fox Chase radiologist after appointment and the response:
My Questions: I am unclear on the recommended course of treatment, but believe we were talking about a 5-1/2 week course of EBRT, IMRT? With or without ADT? With or without rectum spacing gel? I’m curious, why choose a longer course of treatment when SBRT Cyberknife can perhaps be done more accurately and in a very much shorter time frame?
I am very concerned to the quality of life issues. At 67 already having minor urinary dripping, diverticulitis, internal hemorrhoids, and an anal fistula, the thought of aggravating these and possibly initiating other ailments is frightening. This is why I initially contacted Dr. Correa concerning possible IRE Nanoknife focal therapy as a first course of action. If that does not work out, radiation therapy seems to be my next logical step.
Answers: Our recommendation is to do 26 treatments of radiation. I do not favor the 5 high dose treatments (SBRT AKA CyberKnife) as you had some higher risk features on the MRI and the biopsy (Gleason 4+3 disease and broad based abutment of the capsule of the prostate suspicious for extension of cancer cells through the capsule). For patients with higher risk features such as these, the risk of microscopic extension of cancer cells through the capsule and into the surrounding tissues goes up, so we treat a slightly larger margin around the prostate and include the seminal vesicles (for SBRT or Cyberknife, we do not). When treating a broader area, we have to give less dose per day over a longer period of time. Thus, the 5 weeks would be best for you. We can have spaceOAR injected to help limit the rectal dose so as not to cause any rectal irritation and worsen your underlying hemorrhoids and anal fistula.
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