In late November 2021, I was diagnosed with advanced Prostate Cancer. My PCa is believed to have metastasized to three lymph nodes (lower neck, diaphragm and lower back). I say “believed” because the metastasis has not been confirmed. My Gleason scores were all 9’s and 10’s. My oncologist and Urologist feel like the odds are 90%+ that these enlarged lymph nodes shown in my PET scan are due to the PCa and are not Lymphoma. They are planning to wait to confirm after a couple of months of ADT and a future PET scan. My PSA was low, at 4.68.
I am taking Eligard (6 month dosage) and Bi. (50 mg tablet), and as a pre-diabetic am taking Metformin. I will supplement with daily calcium, magnesium and D3.
I am reading and learning and checking behind my doctors’ advice and information, which has been amazingly little. I understand they are busy with many patients, but I have been surprised at how committed they are to their 15 minute appointment time slots. Nevertheless, I am educating myself and also planning a second opinion on treatment plan via MD Anderson in Jacksonville, FL.
I wish everyone well with their treatments and results. 👍
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Skipper238
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Thank you, Magnus. That's reassuring, considering I'm only a handful of days into this thing, sort of, and as the joke goes, it could take me "weeks" to become an expert at PC!
(1) Your FDG PET scan was a good choice because of your low PSA, and if the lymph nodes shrink after Lupron they are almost certainly due to prostate cancer. Before they disappear, you may want to ask for a biopsy of one of them. Histology and IHC analysis may reveal exactly what kind of prostate cancer it is, and, if enough tissue, a genomic analysis can provide further clues. For your next PET scan, you may want to have two of them - a repeat of the FDG scan to show shrinkage and a Pylarify PET scan to find if there are any PSMA-avid metastases.
(2) You should ask about SBRT to your prostate. In men with very few metastases, that has been shown to slow progression and improve survival:
TA - Your article linked in ( 2 ) is really great, but don't see much there about SBRT application....is there the assumption that SBRT will be non-inferior to standard IMRT or hypofractionation?
Thanks for your replies, Tall_Allen. I will discuss all of the items you suggested with my Oncologist during my next appointment.
In terms of the calcium, etc., neither of my doctors have told me to take the supplement. I thought I needed to do it due to the ADT medicines Eligard and Bicalutamide. Do they not deplete calcium in the bones as they reduce testosterone in the body? Thx.
I've read many of your posts and appreciate your opinions and knowledge. Thank you for your time.
Taking extra calcium may encourage prostate cancer growth and may be harmful to the heart. It does nothing for your bones, if blood levels are normal. Similarly, Vitamin D does not improve bone health if levels are already normal. Resist the urge to flood your body with extra chemicals that you don't need. Just eat a healthy, varied diet - that will provide all the micronutrients you need and will support your microbiome. Exercise will do more for bone health than any of those.
As Tall_Allen pointed out in a URL he sent you, the latest treatment recommendation for men with high risk, advanced prostate cancer is to to combine ADT with abiraterone, prednisone, and docetaxel. Allen quoted the trial report: "Radiographic progression-free survival increased by 2.5 years (from 2.0 to 4.5 yrs) with the addition of abiraterone to docetaxel" Two and a half years of extra life is a big deal! I don't understand why your oncologist is not following that, or at least the previous SOC that added either abiraterone+prednisone or docetaxel to ADT.
I understand that a doctor who makes appointments for every 15 minutes has to keep those appointments, but I'm not impressed by a doctor who only allocates 15 minutes to discuss serious life changing issues. I've had oncologists spend an hour with me.
I hope you get better treatment at M.D. Anderson. Please take the information Tall_Allen gave you to your appt. at Anderson.
I don't think I was as clear as I could have been regarding this. My Oncologist and Urologist are from my local hospital system in Brunswick, Georgia, USA. I am in the processing of arranging a second opinion through MD Anderson in Jacksonville, FL, USA, which is 1.5 hours away from where I live. MD Anderson in Houston was my original choice for the second opinion, but they require an in-person visit. With COVID spreading and my life going full-speed, I'm just not going to get on a plane and fly to Houston, TX, unless my life depends on it. Hey, wait a minute. Maybe my life does depend on it! 😀
I'm confident, hopefully not proven wrong, that you will be happy with the expertise of the Anderson Docs. It is apparent that you are going to make a good decision, weighing QOL and long-term results. Unfortunately, we have no way to know whether a road we didn't choose would have resulted in more satisfactory outcome than what we experienced from the road we did choose....... will be interested to learn how much the Anderson Docs VOLUNTEER about the side effects of various treatment options. Everything is probabilities...I've learned that a probability that favored me isn't a predictor of my actual result!!!!! Sometimes that is good, sometimes NOT!! I often wonder if the men who just go with the flow of initial Doc advice do just as well as those who devote half of waking hours to researching this thing?
Thank you, Alan. I appreciate your post. I have read Tall's article, will review the study in detail and will discuss with the MD Anderson "second opinion" doctor(s) and my Oncologist, who is at my local hospital system in Georgia, U.S.A.
With that said (and I will ask for extra consideration on all of this, since my diagnosis was 8 days ago, and I am still processing my new reality and have a lot to learn, etc.), I noted a couple of things.
1. Early in the article, this point is made about about findings, I believe, from the Stampede trail.
"Serious toxicity (Grade 3 or greater) was also equal: 50% for docetaxel, 48% for abiraterone."
So, that is something I am trying to wrap my mind around related to quality of life. I have two children, ages 12 and 15, and although I want to be here for them as long as possible, I also want my quality of life to remain as high as possible for as long as possible. My feeling is that they will do better, long term, if they continue to see me as strong and viable and "normal" as possible for as long as possible. So, maybe that means that I should adopt this new SOC from the PEACE-1 study and introduce some downside to my quality of life early, so that I can have a longer and higher quality of life down the road. On the other hand, if I am able to ride ADT for 5 years and then introduce chemo and other, maybe that accomplishes my goal better. I am thinking about these things and hope people understand.
2. I am trying to understand how the conflict that "Tall" points out below applies to me. I believe my metastatic load to be "low", at the point.
"This controversy is reflected in the conflicting recommendations that constitute the standard of care.
The current NCCN guidelines state: "Docetaxel should not be offered to men with low volume metastatic prostate cancer, since this subgroup was not shown to have improved survival in either the ECOG study or a similar European (GETUG-AFU 15) trial."
The current ASCO guidelines state: "Recommendation 1.2. For patients with low-volume metastatic disease (LVD) as defined per CHAARTED who are candidates for chemotherapy, docetaxel plus ADT should not be offered (Type: evidence-based, benefits outweigh harms; Evidence quality: high; Strength of recommendation: strong for patients with LVD)."
On the other hand, the current AUA/ASTRO/SUO guidelines state: "15. In patients with mHSPC, clinicians should offer continued ADT in combination with either androgen pathway directed therapy (abiraterone acetate plus prednisone, apalutamide, enzalutamide) or chemotherapy (docetaxel). (Strong Recommendation; Evidence Level: Grade A)
Canadian Urological Assn (CUA) guidelines state: "Docetaxel plus ADT may also be an option in patients with mCNPC/mCSPC with good performance status with low-volume disease (Level 2, Weak recommendation)."
NICE (UK) guidelines state: "Offer docetaxel chemotherapy to people with newly-diagnosed metastatic prostate cancer who do not have significant comorbidities."
European Urological Assn (EAU) guidelines state: "Based on these data, upfront docetaxel combined with ADT should be considered as a standard in men presenting with metastases at first presentation provided they are fit enough to receive the drug [1070]"
I personally believe that the STAMPEDE researchers make a stronger case pending better data from PEACE1.
The first thing I want to say about your response is that I am deeply impressed by the effort you are making to understand the medical/scientific and personal/family issues you are confronting. The science is complicated, difficult, and inexact. The personal issues are full of unknowns. I think you're doing better than most of us in trying to figure it all out.
I used to imagine that I understood all of the science as well as any of us patients did until Tall Allen joined the group and I realized how much more he read, studied, and understood the science than I did. I try to be more circumspect now in my pronouncements about treatment. However, bearing in mind that everything I say is based on inadequate study and should not be taken as authoritative (something that I('m sure you won't do) I will add a few ideas about your analysis above.
The first is that the studies of ADT + abiraterone or docetaxel found that, for the category of men that were helped by them, the combination of ADT + one of the other drugs taken at the same time produced significantly longer life than ADT followed by one of the other drugs after ADT failed. I presume that happened because the tumor population was more successfully suppressed than happened with ADT alone. The number of cells that developed resistance to both treatments at once would have been much smaller than those cells developing resistance to either one by itself.
A second point I want to make here is that both abiraterone and docetaxel are drugs that are administered over time. If you take a dose of one of them and face intolerable adverse effects, I think it should be possible to simply discontinue the drugs, switch to another concomitant treatment, or fall back on ADT alone. Most of the adverse effects should disappear in not too many days after discontinuing treatment. Consult your oncologists about this - they'll have experience with men who have done that. I don't think it should be necessary to rule out advanced treatment before you've tried it.
There are many men on this forum who have managed abiraterone and/or docetaxel and concluded that the benefit was much greater than the harm. There are, or course, others who had the opposite experience.
In some cases I believe that the management of treatment has something to do with the experience of side effects. For example some men may be given 1/2 or 1/3 the normal dose of docetaxel but twice or three times as often as the normal dose so that their total dosage is that same. The one paper I read about that said that side effects were reduced without reducing the treatment effect. The one patient who told me about his experience with altered dosage claimed he had no significant side effects from docetaxel but his treatment response was excellent. Some men are offered cold baths for hands, feet, head, and mouth to reduce side effects there, Other men are not offered that. Some men are offered Neulasta to help avoid infections. Others are not.
I had both enlarged and mildly prominent lymph nodes noted on my original CT scan. I started Lupron right away and talked to my RO 2 months later. He decided to get a biopsy of a distant mildly prominent lymph node prior to radiation. They could not find a lymph node at all with ultrasound. They thought they did, doped me up, then tried to find it again for 20 minutes. 3 people tried and they weren't able to find any lymph nodes and gave up. Seems like this procedure should have been done before ADT but it once diagnosed they want you on the ADT train right away. They proceeded to radiate me up to my aortic bifurcation which is as high as they normally go. My PSA was 156 with relatively low Gleason, clean bone scan and only assumed (rightly so IMO) LN involvement so from day one all docs were convinced I have more cancer than could be seen. So if your treatment is effective after a couple months of ADT I suspect they won't find much in your lymph nodes. Not sure if that is a good thing or a bad thing anymore but time may tell.
Good luck to you and mat all your treatments have longterm success.
Thank you, Treedown. One thing I am trying to sort out is exactly this. It seems like taking a biopsy now is a good idea. "Tall" pointed out a couple of reasons in his post. I don't understand the issues well enough to know, right now. My question has to do with the biopsy report from prostate biopsy. Does it have enough cell information and "histological" data that if my lymph nodes do shrink after 60 days of ADT, no biopsy is really needed? Or, is there more to be learned, even at that point, by taking a biopsy of the lymph nodes. I will figure this out and ask my Oncologist more about it at my appointment on Dec. 30. I don't get my first Eligard shot until this Friday, Dec. 10, so there should still be enough lymph node around at that time, if a decision is made to do a biopsy.
My RO was trying to biopsy a LN to determine how high/much to radiate. He wanted to get beyond the, for lack of a better word, "known" cancer. I researched LN size as mine were enlarged but still not giant and that research noted that mine were not abnormally large. After the biopsy attempt I had a pelvic MRI and that confirmed my LN had shrunk. The whole process takes time and wrapping my head around everything is an ongoing process. I have learned to let things come as they may and deal with them at that time. All the energy I was using to predict or anticipate has proven to be misdirected in many ways. Now I just try to absorb and learn. This forum is great and I would feel far more lost without it.
Thanks very much. I'm on the phone right now with MD Anderson, scheduling my appointment for a second opinion on treatment. We see what the good doctors at MD Anderson have to say.
Actually you have gotten things going pretty well.Get multiple opinions from PCa specialists, continue your self education so you can ask and discuss all your options.
Don't relent from your goal of living longer than anyone thought possible.
Exercise diligently, enjoy your family and friends.
Follow the SOC Standard Of Care. It is based on the best treatments that science can offer.
Seek out a local support group and monitor HU daily. Learn from the posts and the responses.
My husband was diagnosed with prostate cancer in November 2020. It was a very confusing time for us and we didn't know where to turn. We ended up at Mayo Clinic in Phoenix and have been very pleased with his care there. Since you are going to Jacksonville, it may be good to also schedule a consultation at Mayo.
Hi iyoder I have taken the SOC route as well but would also like to hear what you are doing as I am contemplating a more natural approach once the ADT phase ends.
iyoder promoting some mambo jumbo supplement PC HOPE, that is latest reincarnation of PC-SPES (was banned by FDA because contained hormones and other non-declared prescription meds) with unknown content from ugly looking sales pitch website. He most likely behind it. That is my opinion of course.
Questions to Ask Your Health Care Provider About CAM
To Learn More About CAM
Overview
NOTE: The information in this summary is no longer being updated and is provided for reference purposes only.
PC-SPES is a mixture of 8 herbs that was sold as a dietary supplement to keep the prostate healthy (see Question 1).
Some batches of PC-SPES were found to contain prescription medicines. It was taken off the market and is no longer being made (see Question 1).
Herbs in PC-SPES have been used in traditional Chinese medicine for many health problems, including prostate problems, for hundreds of years (see Question 2).
The herbs used in PC-SPES have been reported to help keep cancer cells from growing or help prevent cell damage that can lead to cancer (see Question 3).
Laboratory and animal studies suggested that PC-SPES might slow the growth of prostate cancer cells, but it is not known if these results were caused by the herbs in PC-SPES, prescription medicines that were found in the mixture, or both (see Question 5).
Clinical trials suggested that PC-SPES lowers PSA (prostate specific antigen) and testosterone levels in humans and has some anticancer effects. It is not known if these results were caused by the herbs in PC-SPES, prescription medicines that were found in the mixture, or both (see Question 6).
The U.S. Food and Drug Administration has not approved PC-SPES for use in cancer treatment (see Question 8).
Questions and Answers About PC-SPES
What is PC-SPES?
PC-SPES is a mixture of herbs that was sold as a complementary and alternative medicine (CAM) treatment for people with prostate cancer. The mixture contains these 8 herbs:
Baikal skullcap (Scutellaria baicalensis)
Chrysanthemum flowers (Dendranthema morifolium)
Reishi mushroom (Ganoderma lucidum)
Isatis (Isatis indigotica)
Licorice (Glycyrrhiza glabra or Glycyrrhiza uralensis)
Ginseng (Panax ginseng or Panax pseudoginseng var. notoginseng)
Rabdosia rubescens (Isodon rubescens)
Saw palmetto (Serenoa repens)
PC-SPES was taken off the market because some batches were found to contain prescription medicines in addition to the herbs. Clinical trials of PC-SPES that were underway were stopped. There are products being sold now as substitutes for PC-SPES, but they are not the same mixture. Since the only company licensed to make PC-SPES is no longer in business, PC-SPES is not legally available in the United States.
What is the history of the discovery and use of PC-SPES as a complementary and alternative treatment for cancer?
Most of the herbs in PC-SPES have been used in traditional Chinese medicine (TCM) for many health problems, including prostate problems, for hundreds of years. A chemist in New York and a doctor/herbalist in China worked together to create the mixture. In 1997, a company was formed to make PC-SPES and sell it in the United States without a prescription. Interest in PC-SPES grew, and researchers began looking at it. Tests found that some batches of PC-SPES contained one or more of the following drugs, which are not found in nature:
DES, a type of estrogen made in a lab.
Warfarin (Coumadin), a blood-thinner.
Indomethacin, a drug used to decrease inflammation.
Because these drugs are to be used only by prescription and could be harmful to some people, PC-SPES was taken off the market in 2002.
What is the theory behind the claim that PC-SPES is useful in treating cancer?
In lab tests, each herb used in PC-SPES has been reported to help keep cancer cells from growing or to help prevent cell damage that can lead to cancer and other diseases.
PC-SPES was reported to slow the growth of prostate cancer but did not cure it. It is not known how PC-SPES works in the body. Some of the herbs in the mixture contain phytoestrogens, which are estrogen-like substances found in plants. Estrogen can cause the testicles to stop making testosterone, which makes some prostate cancers grow. Patients' responses to PC-SPES were similar to responses to estrogen therapy using DES. The DES found in some batches of PC-SPES, however, may not have been enough to cause all of the estrogen-like effects that were seen in users of the mixture. There is some evidence that the mixture works in a different way than DES does, and that PC-SPES alone (without DES in it) may fight prostate cancer.
PC-SPES has also shown anticancer effects on prostate cancers that do not depend on testosterone and on other types of cancer. This suggests that PC-SPES may have anticancer qualities other than its estrogen-like effects.
How is PC-SPES administered?
PC-SPES is taken by mouth in capsules.
Have any preclinical (laboratory or animal) studies been conducted using PC-SPES?
Studies of PC-SPES in test tubes and using rats showed that it might keep cancer cells from growing. These studies were done, however, before it became known that some batches of the product contained unlisted prescription medicines. Also, the product was not standardized (different batches of PC-SPES were found to contain different strengths of the herbal ingredients). For these reasons, the results of the lab tests and animal studies are not considered to be good evidence.
Have any clinical trials (research studies with people) of PC-SPES been conducted?
Clinical trials of PC-SPES had begun before the product was taken off the market. In these trials, PC-SPES was reported to improve quality of life, reduce pain, and lower PSA (prostate specific antigen) levels in patients with prostate cancer. Rising PSA levels can be a sign that prostate cancer is growing.
After it was learned that some batches of PC-SPES contained prescription medicines, ongoing studies were stopped and previous study results came into question. The responses reported in the studies may have been caused by the prescription medicines that were in the PC-SPES, as well as by the herbal ingredients. Also, since different batches of PC-SPES contained different ingredients, the studies cannot easily be compared.
Have any side effects or risks been reported from PC-SPES?
Common side effects were the same as those reported with estrogen therapy:
Breast swelling and tenderness.
Loss of sex drive.
Impotence (inability to have an erection).
There were other, less common, side effects:
Blood clots in the legs.
Diarrhea.
PC-SPES may also change the way drugs, including anticancer drugs, work in the body. It may cause drugs to be more or less effective, or cause effects on the body that are not expected.
Is PC-SPES approved by the U.S. Food and Drug Administration (FDA) for use as a cancer treatment in the United States?
The U.S. Food and Drug Administration has not approved PC-SPES for use in cancer treatment. It is not legally sold in the United States.
About This PDQ Summary
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Physician Data Query (PDQ) is the National Cancer Institute's (NCI's) comprehensive cancer information database. The PDQ database contains summaries of the latest published information on cancer prevention, detection, genetics, treatment, supportive care, and complementary and alternative medicine. Most summaries come in two versions. The health professional versions have detailed information written in technical language. The patient versions are written in easy-to-understand, nontechnical language. Both versions have cancer information that is accurate and up to date and most versions are also available in Spanish.
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Complementary and alternative medicine (CAM)—also called integrative medicine—includes a broad range of healing philosophies, approaches, and therapies. A therapy is generally called complementary when it is used in addition to conventional treatments; it is often called alternative when it is used instead of conventional treatment. (Conventional treatments are those that are widely accepted and practiced by the mainstream medical community.) Depending on how they are used, some therapies can be considered either complementary or alternative. Complementary and alternative therapies are used in an effort to prevent illness, reduce stress, prevent or reduce side effects and symptoms, or control or cure disease.
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Your story sounds somewhat similar to my own. I was lucky enough to be evaluated early by a multidisciplinary team with a very progressive medical oncologist who advised that I start on ADT, docetaxel (6 cycles), abiraterone/pred and use radiation for local control right out of box. He was aware of the on-going trial which later resulted in the paper cited by TallAllen and was a strong advocate for me getting this approved by my insurer. The evolution of prostate cancer care seems to be away from just adding something on as you PSA bumps but instead to be aggressive out of the box. The one error I think in my care was that I did not follow up immediately on completion of my chemo and radiation with a PSMA PET/CT as I had a high grade tumor and the odds of it being positive and amendable to Lutetium "mopup" were high.
A big question that has not been adequately answered is whether or not those abnormal lymph nodes are actually prostate cancer. F18 PET scan does not answer that. You could wait to see if the ADT shrinks them. Personally, I would insist on a PSMA specific PET scan such as Pylarify. If that shows them to be PSMA avid then it confirms it. And also prepares you for taking advantage of Lu-PSMA treatment which is expected to be approved soon. Also, if that is positive, then you are “de-novo metastatic PC and have “high burden” if more than 4 nodes are positive. That would indicate you may benefit from the triple early regimen of the PEACE-1 trial.I would have this sorted out at MD Anderson place of your choice. I would not be deterred about flying to Houston, in person visit, etc. Just be fully vaccinated and very consistent with mask wearing, hand sanitizer, etc. Yes your life depends on choosing wisely with the best medical team. Perhaps they can pre-schedule you for the PSMA PET scan at MDA the same day as your consult. Keep good relations with your current local doctors. You may need services through them once the plan is in place.
Thank you, Mateo. I have scheduled a consultation/second opinion for my treatment with the good doctors at MD Anderson in Jacksonville, FL. I will add this to my list to discuss with them. I appreciate your post and suggestion on the PSMA-specific PET. I'm curious to know how much is spread within my body anyway. Thank you.
Comment: All cancers occur in a unique context, I.e. the patient. You have not mentioned anything about your overall health status. I assume you have a good and experienced internal medicine physician. Medical care is very fragmented today and it is critical to address the whole patient. Also it’s great to be a model man’s man for your children but that also includes being human. No need to go through all this alone. Be open to vulnerability and human emotions. It’s all part of life. We all need each other. We all deserve that. You’ve done a remarkable job at educating yourself. Very impressive. You are receiving priceless knowledge from those on this group. Stay connected.
Thanks for your thoughts. I am trying to assemble a good team of doctors to help me with all of this. That is currently a work in progress.
In terms of being a "model man's man" for my children's sake, as you put it, that is really not my goal. I don't think in those terms. Rather, I think in terms of what I think is best for my children. If you look at my post about using a packet of frozen corn to help numb the injection site for my first Eligard treatment, you'll see evidence of that I'm not focused on being a "man's man" :). (Also, I just used a smiley face in a sentence, so hey, there you go. A man's man does not EVER use a smiley face in a sentence!
With my children, I am making every effort to not overly focus on my advance prostate cancer and to providing clear, sensitively communicated and age-appropriate info. What I am trying to prevent, as I am sure many before me have done, is t my children starting to worry NOW about the severity, permanence and end of life considerations for my condition. Said simply, I don't want them to think I'm about to die.
I want to let my new reality of having advanced PC roll for a while -- let it unfold -- as I begin the best treatment possible. Over time, my children will see how I am doing, which hopefully will be encouraging for them. In the future, if I take a turn for the worse, I may find it important to education them more and be more specific about "things".
But, right now, I am focused on getting my treatment plan in order and then getting back to living. There will come a time for dying, but that time is not now. So, again, simply put, right now I say it to my kids a bit like this: "Kids, It turns out I do have prostate cancer, but it is treatable. I'll need to take medicine for the rest of my life, probably, but as we know, we're all lucky to be living in a time where medical science is improving every day. We can talk as much as you'd like, but I'm good."
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Lymph Node-Positive?
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My first post. Rising PSA After Surgery. 
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