My Journey begins - Navigating with Prostate Cancer
Comments
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I have TRICARE as a backstop to my main insurance. Let me see what they said to my Prolaris claim…
As an OBTW, because I spent time in Djibouti, Africa and their burn pits, my PCa gives me a 100% VA disability rating, with a nice check each month.
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Of course it was useful.
In my case, it was confirmatory, backing up the thought that what I had wasn’t high risk. It helped moved the needle on the decision making from treatment to surveillance. Tightened the distribution.
Theres no downside to having that extra information, other than cost. Funny thing is, my doctor didn’t think I needed it. Yet now that it’s done, he cites it in his post-visit writeups.
Good article…
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My experience with insurance companies is that they follow their algorithms provided by a bot and when you challenge them they have a non medical representative over ruling your doctors wishes. The bottom line is that insurance companies care more about their bottom line than they do the patient. There is plenty of imbedded politics as well. Gonna get worse unfortunately. Good luck Curt
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If you're okay with answering may I ask if you had symptoms prior to testing positive for cancer and since being in the surveillance mode have your symptoms worsened any? Curious what your Gleason scores were. I would love to be able to have a Prolaris test that would give me the confidence to go from treatment to surveillance but I'm not sure I have any room in my prostate's peripheral zone for any kind of waiting period/surveillance. Hmmmm .... I wonder if 'surveillance' is even an option for me???
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Here’s my history. I had BPH symptoms, with a prostate of 140cc (BIG) and a climbing PSA that went up to 5.79 at its peak. An MRI identified a lesion, PIRADS 4. Had a targeted biopsy, the 12 samples on a standard grid were clean. The three targeted samples were G3+3, elevated to G3+4 with less than 5% off type 4 in a second opinion by Hopkins. My urologist recommended AS. I chose to have a HoLEP procedure to resolve the BPH problems and make me a better candidate for radiation if the time comes. My PSA after the HoLEP was only 0.4, it has since climbed and stabilized at 0.87 my last two checks, almost two years out. I have my six month check with the Uro in a couple of weeks.
In short, my experience is well different from yours. I am favorable intermediate bordering on low risk, you are unfortunately at high risk due to your high PSA, Unfavorable Intermediate Risk otherwise. You have some tough decisions to make.
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Hi,
Sorry for this late reply.
I saw the pathologist report you pasted above but this doesn't include the comments on the characteristics of the prostatic cells (or other details reflecting possible extraprostatic extensions, etc) which data is typically required from the pathologist to formulate a decision by the urologist.
It looks to be incomplete and not signed.
The DNA profile analysis will be helpful to understand the conclusions of the pathologist.
Let's wait for the results of the 68Ga-PSMA PET (Jan 6) and talk again on the issue.
Best wishes for a healthy New Year.
VG
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I've just learned about Who is a candidate for Transurethral Ultrasound Ablation (TULSA). It's a one time treatment and seems the least invasive and able to steer clear of vital organs and other areas to avoid side effects.
Anyone know if I'm a candidate for this type of treatment given my pathology report realizing that my PSMA PET scan is still outstanding (Saturday).
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My PSMA PET Scan results (from Saturday) are in.
From what I gather (with help from AI ChatGPT interpretation) from there's a focal area of increased tracer uptake in the right pelvis with an SUV max of 1.6. This activity is noted posteriorly, near the ureter. However, there's uncertainty regarding the nature of this activity. It's described as equivocal for a sub-5mm right internal iliac node. This means there's some suspicion but insufficient evidence to definitively identify a small lymph node in this area.
Overall Impression (again by ChatGPT AI):
- The scan indicates active primary neoplasm within the prostate gland, confirming the presence of prostate cancer (or another abnormal growth) due to the significant tracer uptake.
- There's uncertainty regarding a small right internal iliac node, which is equivocal for metastasis. Further investigation or follow-up might be needed to confirm the nature of this node.
I'm also able to view the images which are amazing. I thought from what I had seen on the internet I would be looking for bright, light-up, blue spots BUT no blue. The prostate area seems to be lit up as bright yellow outlined by red and so do other normal organs so I don't really know how the cancer is distinguished by its color. I've attached one screenshot from the many available images. Not sure what I'm looking at I must say.
The actual report follows:
Study Result Narrative & Impression
EXAM:
NUCLEAR MEDICINE PROSTATE CANCER GA-68 PSMA (ILLUCCIX) PET/CT
CLINICAL DATA:
C61; Initial eval for prostate cancer. Injected dose 5 mCi, right
hand.
COMPARISON:
MRI Prostate 11/29/2023
TECHNIQUE:
Following the intravenous administration of Ga-68 gozetotide, PET/CT
performed with field of view head/vertex to midthigh. CT performed
for attenuation correction and localization purposes only.
CT scans at this facility use dose modulation, iterative
reconstruction, and/or weight based dosing when appropriate to
reduce radiation dose to as low as reasonable achievable.
Ga-68 PSMA dose: KIT FOR PREPARATION OF GA-68-GOZETOTIDE 25 MCG
INTRAVENOUS SOLUTION: 5 mCi.
FINDINGS:
Prostate avidly positive concerning for primary neoplasm SUV
measurement up to 18.7.
GU tracer excretion.
Focal activity right pelvis (image 245) SUV max 1.6, without a
measurable node but activity considered posterior compared with
ureter. Finding equivocal for sub-5mm right internal iliac node.
No additional focus concerning for pathologic retroperitoneal,
iliac, or groin adenopathy activity.
No concerning focal bony activity.
No pathologic uptake in the chest or axilla. No pathologic uptake in
the head or neck.
IMPRESSION:
1. Prostate activity concerning for active primary neoplasm.
2. Equivocal for sub-5mm right internal iliac nodal metastasis.
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Nice little curve ball with the "equivocal" comment.
I guess it'd be a good exercise to contemplate your treatment options in two different ways. First, if you believe if there is nothing in that iliac node. Second, your options if you believe there is something in that node. Then consider where there is maximal overlap in the two sets of options.
Boy, a trip to Vegas has nothing on PCa decision making when it comes to games of playing the odds.
So what are you thinking?
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I know right!?
I'm still waiting on more information I can only presume is important in my decision-making process. That is the Prolaris Test that I'm fighting with my Urologist to even submit a Referral Authorization to Tricare. So far TRICARE has not denied it however the Urologist and Prolaris are saying TRICARE won't cover it. In my discussions with TRICARE they have no idea about this since a "Referral Authorization" has not been submitted and until the deny it I can't even fight for it and possibly get an exception ruling to cover it.
I'm also waiting to see an 'updated pathology report' that will provide the percentage of '4' scores within each of the 11 core samples that were graded 3+4.
My preference for treatment given all that I've researched to date would be the TULSA-Pro procedure ( https://youtu.be/f0fgRHBhc6g?si=O1W4y-rhhhbW9iyH ). However, it does not appear to be covered by insurance until possibly 2025. In my discussions with a TRICARE representative I was told that a "certificate of medical necessity" could be submitted for TRICARE to potentially consider convering it. Not sure I'd hold my breath for that.
Brachytherapy appeals to me as well however our local Radiation Oncologist in Myrtle Beach, SC only offers SBRT so I would have to find a place elsewhere to help me with that procedure and it appears to be a covered procedure if that place accepts TRICARE.
I'm also exploring Proton Beam Therapy offered at the Mayo Clinic in Rochester, MN. Not sure if it is covered as of yet.
I'm not opting for surgery, and I am not opting for Hormone Therapy and as you might could tell I'm happy with the least aggressive approach no matter what procedure/s I may opt for. Not sure what is the best approach but given what I've learned about the impacts and side effects on quality of life, the enduring risk of reoccurrence I'm taking an approach that I will be monitoring and managing this for the rest of my life. It may not be the best approach but it's where I'm at right now.
Curt :)
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Hi again,
The PSMA scan doesn't show far metastases. Your case is considered localized even if the lymph node turns out to be positive.
These localized lymph nodes can be dissected during surgery or radiated together with the gland and prostate bed. However, the data collected doesn't indicate that you have a contained case.
Now it all depends on the risks and side effects attached to the treatment. What are your preferences?
Discuss with the doctors and get second opinions on their advices. I think it good to involve your family in the decision process.
Best of luck
VG
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My PSMA PET scan says "Equivocal for sub-5mm right internal iliac nodal metastasis." which I took to mean it is ambiguous or not sure. However, the urologist says given my PSA of 81 he is certain I have micro metastasis. These are tiny clusters of cancer cells are not visible through routine imaging tests and cannot be detected using conventional methods like CT scans or MRIs because they are too small to be seen. However, they have the potential to grow and form metastatic tumors in these secondary locations over time. So I'm left to believe him at his word since the PSMA Pet Scan doesn't show these. He believes I have an aggressive cancer and that I'm NOT a candidate for surgery (removal of the prostate). That's fine because I didn't want the surgery anyway. Next is a bone scan, and a CT scan to establish baselines prior to any potential radiation treatment. I am being referred to a Radiation Oncologist to discuss treatment options after that. The urologist seems to believe that this thing will continue to metastasize in the absence of Hormone Therapy Treatment (which I do not want due to side effects) or chemotherapy. Radiation or some variation of radiation treatment seems to be in my future for the treatment of the cancer in my prostate gland.
I've been reaching out to Mayo Clinic, Profound Medical (many locations), VA Hosptial and whoever they may refer me to and now will be getting a referral to a Radiation Oncologist. All avenues are still being explored. Nothing is off the table as of yet. Still trying to gather information and home in on a specific treatment option that feels best for me/us.
So the bad news is I'm on the clock now and I'm only 60. It does NOT appear that it was caught as early as it could have or should have been. According to the urologist he feels this “the cancer has gotten ahead of us.” Treatment can help impede or **** its advancement. The good news is the doc says I look like I'm only 40. 🙂
Am I over-reacting in regards for my disdain of hormone therapy? I really don't want to experience these potential side effects and I sense that the benefits of NOT taking the hormone therapy provide me a better quality of life given the side effects that I am fearing ....
Androgen deprivation therapy (ADT), also known as hormone therapy, is a common treatment for prostate cancer. It aims to lower levels of male hormones (androgens), particularly testosterone, in the body, as these hormones can fuel the growth of prostate cancer cells. Side effects of ADT can vary from person to person and may include:
- Sexual side effects: Reduced libido (sex drive), erectile dysfunction, and shrinkage of the testicles may occur due to lowered testosterone levels.
- Hot flashes: Men undergoing ADT may experience hot flashes similar to those in menopausal women, characterized by sudden feelings of warmth, flushing, and sweating.
- Fatigue: Some individuals might feel more tired or experience reduced energy levels during ADT.
- Loss of muscle mass and strength: Decreased testosterone levels can lead to a reduction in muscle mass and strength.
- Osteoporosis and bone thinning: Long-term use of ADT can increase the risk of bone thinning (osteoporosis) and bone fractures.
- Mood changes: Some men may experience mood swings, irritability, or depression during hormone therapy.
- Weight gain: Hormone therapy can contribute to weight gain, particularly around the abdomen.
- Breast enlargement (gynecomastia): Some men may develop breast tissue growth or tenderness due to altered hormone levels.
- Increased risk of cardiovascular issues: ADT might increase the risk of heart disease and metabolic complications like diabetes.
- Memory and cognitive changes: Some men might experience changes in memory, concentration, or cognitive function while on ADT.
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Hi curtalva -
I am 76 yrs old and currently on ADT having had two of three 6 month shots. I joined this site to get some information on the side effects others are having while taking Lupron. I have experienced most of the side effects you have listed except for #'s 8, 9 and 10. I don't know if osteoporosis is possible with the 18 month regimen I am on but I have upped my exercise to help strengthen the bones.
I have a few hot flashes daily that are annoying but tolerable. The loss of muscle mass has caused a number of issues affecting my joints. I have had to have physical therapy for my knees, shoulders and neck. I had never had joint issues before the Lupron injections. The therapist said that he has dealt with others on Lupron that have experienced joint issues due to muscle weakness. Therapy has helped but I need to wear a soft cervical collar at night to keep my neck aligned so I don't wake up with numbness and tingling in my arm and fingers.
I have also gained weight and experience fatigue. Sexual side effects are loss of libido and shrinkage of the equipment. Very annoying.
I am seriously considering NOT taking the third Lupron injection scheduled for early April 2024. My urologist and radiation oncologist both say the 18 month Lupron protocol along with the radiation I received last summer is the key to kicking cancer's butt. My PSA is <.03ng/mL and is considered undetectable. The Lupron has caused my testosterone level dropped from 521ng/dL (normal range) to <12ng/dL. My concern is that I have read that, at my age, it may take a long time for testosterone to recover to normal levels. If that is true and the docs want low testosterone maintained for 18 months, why take the third shot?
Bottom line - My experience is mine. I am much older so the side effects could be amplified. Your experience may be completely different. I know the decisions are difficult but the end result of defeating the cancer is the goal.
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Thanks for reaching out to me and providing that information. I'm like a sponge and want to hear it all so I can digest it along with my own thoughts and experiences researching. I like it best directly from the cancer patient so Thank you for sharing. I am grateful and appreciative.
Best wishes to you and your family. I'm hopeful and glad to hear that you have gotten your PSA that low.
All the best!
Curt
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