3 years on with prostate cancer

I was diagnosed 3 years ago with Gleason scale 6 (3+3) I,ve had 2 MRI scans which showed little change so continued on Active Surveillance. My PSA is now 10.5.  I'm due another consultation(by phone) soon.. My consultant cancelled the last one in December.

I have not seen a single person in the flesh since I was given the biopsy results (also over the phone)

Given the waiting times for cancer treatment, I'm wondering whether I should bite the bullet and have the prostate removed..

I'd be grateful to hear what others think

  • Hi Jimsy2005 and welcome to the forum, As your Gleason score is 6, which means your cancer is T1 or T1a and very slow growing and very low risk, you may never need any treatment. though that is a decision for you alone to take. Though i would say your PSA  at 10,5 should be discussed with your consultant when he phones you. I think current guidelines regarding a prostatectomy are 60 days from referral, Though if you want my opinion i would not be thinking of surgery as there is little if any benefit and the costs, "side effects", could be high. take care.

    Eddie

  • Hi, eddiel, thanks for replying. Spoke to Consultant today. PSA doubling time is 3 years, so agreed to further blood tests and an MRI around August. Was having a bit of a wobble this morning but your post helped! Thanks again and good luck

    Jim

  • Hi Jim, happy to help, Would never tell someone what treatment to choose, but I'm glad you have held off on surgery, take care.

    Eddie

  • Dear Jimsy, Eddie & Forum Members,

    Thank you for your posting on this supportive Forum.

    I wonder what age you are, Jimsy?

    When I was almost 76 (in July 2021), I was diagnosed with prostate cancer (PCA) following an MRI scan and subsequent  biopsy arranged by the ProstateTeam at a hospital in W.London.  In the grounds of the hospital is the famous "MAGGIES" - our new Queen Camilla visited their founding premises in Scotland last year.  About 15 members of "MAGGIES" meet up on the first Monday of each month to discuss their sitiuations with drinks and refreshments available (without charge).

    I had been monitoring my PSA Blood Test results since the end of 2013 (when at that time it was about 2 μg/L) because a friend had told me about keeping an eye out for raised results.  I think that in past years, some GPs may not have always gone looking for prostate problems so much.

    In May 2021 - June 2023, my PSA was averaging at about 6.2 μg/L then in October 2023, it rose to 7.09 μg/L  but this was followed by 5.93 μg/L in March 2024.   However, in May this year, it rose to 8.20 μg/L and I am having a repeat test in 7 days time at my GP Surgery.

    In late 2021, I was going to have "HIFU" but at the last minute (literally - I was in my hospital gown!), the surgeon suggested that there might be the option of "Active Surveillance" instead as my problem was confined within the prostate perimeter.  I decided not to go ahead with the HIFU after all.  I was not in any event keen on having to have a catheter fitted, although I heard later at "MAGGIES" that patients have usually managed to tolerate this.

    As I was not having any treatment at all, I researched the Internet for any possible herbs that might help reduce the unwanted proliferation of PCA cells and I read various scientific studies that have been published on the Web - printing off hundreds of pages!

    Amongst the 40 odd herbs I presently take daily are:

    Rosemary, Curcumin, Ginger, Green Tea, Berberine, Baicalein (Chinese), Oregano, Sulforaphan (Broccoli), Cayenne Pepper (Capsaicin), Mushrooms - Turkeytail/Shiitake/Chaga/Cordyceps/Maitake, Astragaloside IV, Betulinic Acid, MSM, Bilberry, Boswelia Serrata, Saffron, Willow Herb, Resveratrol, Quercetin, Beta-Sitosterol, Bromelain, Rosehip. Pygeum. Lypocene, Saw Palmetto, Modified Citrus Pectin, Stinging Nettle, Parsley, Garlic, Cinnamon, Milk Thistle and also Red Reishi Mushroom, Spearmint and Liquorice Root (the last three to lessen Testosterone).

    I only hope that some of them might be making my body resist the rogue cells proliferating.  There does not seem to be any research done into herbal effects on PCA carried out by medical bodies in England.

    As can be seen reading through the postings on the Forum, side effects from various treatments can be stressful.   Hopefully, some kind of immunotherapy can be employed for PCA avoiding Radiotherapy and ADT one day.  I don't know if the newer Proton Beam is available for PCA under the NHS which perhaps reduces damage to surrounding normal cells?

    Regards, Victor  29th May 2024.

    .

  • Morning Victor lovely post with some good advice, one bit of advice to help, there are some artificial sweeteners  found in processed foods which some cancer cells are able to use to grow. Great to meet another Maggie's fan, I have been going for over a year and would, and do, recommend to everyone. PS i did have hormone an radiotherapy with no catheter but did have side effects, take care.

    Eddie

  • Hi Victor and welcome to the forum.

    I'm sorry to hear you were diagnosed with prostate cancer in 2021 but I'm glad the active surveillance has been going well.

    Although taking herbal supplements in general can be harmless, it is important to be aware that some can cause harmful side effects. Or they may interact with medical treatment. 

    So far, there is no reliable evidence from human studies that herbal remedies can treat, prevent or cure any type of cancer. However, some high quality research is looking into complementary therapies to help people with cancer. 

    If you haven't don't so already do make your GP/medical team aware of what you are taking, so they can make sure you stay safe and in case any treatment is needed in the future.

    We're thinking of you Victor and wishing you all the best with your repeat test next week.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Thank you very much for your posting responses Eddie and Steph.

    Processed Foods:  It seems that almost everything is "processed".  I am vegetarian as much as possible in that I do not eat meat or fowl or fish anymore.  I last ate meat about 60 years ago!  I do have a bag of chips from McD or KFC once a week when I meet up with a friend on a Saturday and I add a little salt, otherwise I mostly consume vegetables such as broccoli, onions, tomatoes, carrots, black olives, broad beans, brown bread, croquette potatoes (cooked in the oven with pepper only, no added salt) but I do have packet minestrone soups with grated parmesan cheese.  I am not sure which is these would be a problem exactly? 

    Steph, I have informed my GP and Hospital Surgeon that I am taking all these herbs.  A few of them also lower Diabetes levels (I have type 2 Diabetes) but so far, I seem to have tolerated all of the herbs without upsets as far as I know.

    It is authoratively stated on the Web that there is no reliable evidence from human studies that herbs can help us and I expect that almost all of the scientific studies I have come across only refer to laboratory studies including with mice.  The following text is on the Web relating to one of my chosen herbs "Willow Herb":

    "Extracts from Epilobium sp. herbs have been traditionally used in the treatment of prostate-associated ailments. Our studies demonstrated that the extracts from Epilobium angustifolium, Epilobium parviflorum and Epilobium hirsutum herbs are potent prostate cancer cells (LNCaP) proliferation inhibitors with IC50 values around 35 µg/ml. The tested extracts reduced prostate specific antigen (PSA) secretion (from 325.6 ± 25.3 ng/ml to ~90 ng/ml) and inhibited arginase activity (from 65.2 ± 1.1 mUnits of urea/mg of protein to ~40 mUnits of urea/mg protein). Selected constituents of extracts (oenothein B, quercetin-3-O-glucuronide, myricetin-3-O-rhamnoside) were proven to be active in relation to LNCaP cells. However, oenothein B was the strongest inhibitor of cells proliferation (IC50 = 7.8 ± 0.8 μM), PSA secretion (IC50 = 21.9 ± 3.2 μM) and arginase activity (IC50 = 19.2 ± 2.0 μM). Additionally, ellagitannins from E. hirustum extract were proven to be transformed by human gut microbiota into urolithins. Urolithin C showed the strongest activity in the inhibition of cell proliferation (IC50 = 35.2 ± 3.7 μM), PSA secretion (reduced PSA secretion to the level of 100.7 ± 31.0 ng/ml) and arginase activity (reduced to the level of 27.9 ± 3.3 mUnits of urea/mg of protein). Results of the work offer an explanation of the activity of Epilobium extracts and support the use of Epilobium preparations in the treatment of prostate diseases."

    Similar text appears in most or all of the herbs that I have chosen and reading this does tend to encourage hopes that plants can help naturally remedy the accident of Nature that is often at the heart of our problems with PCA. If it is an error of Nature so it would be fitting if Nature could fight back.  No doubt in "Star Trek", this has already been sorted out long ago in the future!

    Regards and thanks again, Victor.  29th May 2024

  • Hey Eddiel, 

    I just wanted to let you know that there is currently no convincing evidence that artificial sweeteners can cause cancer. I hope this article we have about artificial sweeteners and cancer will help explain this in more detail, but if you have any further questions, don't hesitate in giving our cancer nurses a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Two further studies:

    Amongst my list of herbs which may or may not be helping my system lessen PCA proliferation are Betulinic Acid and Astragaloside IV.  The following extracts are on the Web:

    "Betulinic acid inhibits prostate cancer growth through inhibition of specificity protein transcription factors - Betulinic acid is a pentacyclic triterpene natural product initially identified as a melanoma-specific cytotoxic agent that exhibits low toxicity in animal models. Subsequent studies show that betulinic acid induces apoptosis and antiangiogenic responses in tumors derived from multiple tissues; however, the underlying mechanism of action is unknown. Using LNCaP prostate cancer cells as a model, we now show that betulinic acid decreases expression of vascular endothelial growth (VEGF) and the antiapoptotic protein survivin. The mechanism of these betulinic acid-induced antiangiogenic and proapoptotic responses in both LNCaP cells and in tumors is due to activation of selective proteasome-dependent degradation of the transcription factors specificity protein 1 (Sp1), Sp3, and Sp4, which regulate VEGF and survivin expression. Thus, betulinic acid acts as a novel anticancer agent through targeted degradation of Sp proteins that are highly overexpressed in tumors."

    "Astragalus membranaceus Bunge is widely used in Traditional Chinese Medicine to treat various cancers. Astragaloside‑IV (AS‑IV) is one of the major compounds isolated from A. membranaceus Bunge and has been demonstrated to have antitumor effects by inhibiting cell proliferation, invasion and metastasis in various cancer types. Numerous studies have used in vitro cell culture and in vivo animal models of cancer to explore the antitumor activities of AS‑IV."

    Most of the scientific studies that I have printed off of course contain texts only understandable by laboratory researchers but I have noticed texts that speak about "proliferation" being reduced etc.

    Steph mentioned that there are some studies taking place in this country whereas almost all of the studies on the Web are from foreign countries' scientists.

    Generally, in this country, we don't seem to be involved with herbs at all. Chinese Medicine shops in London are not always easy to navigate owing to language problems.  Some years ago, one Chinese preparation had to be withdrawn in the USA I think it was owing to other elements being discovered in the mix. The Prostate Team at my hospital say that they know nothing about herbs but do not discourage me from trying my luck.

    Regards, Victor.  30th May 2024.

  • Hi VictorHM78 and  , 

    First of all, we just want to say that we are really pleased you have found support from each other at such a difficult time. It is really important to be able to talk to others who understand what you are going through but as Cancer Chat is read by many people, we just need to be clear on Cancer Research UK’s position concerning alternative/complementary therapies and also just reiterate the facts on artificial sweeteners.

    As Cancer Research UK is a science organisation it is important that information posted on our website is accurate and not misleading in anyway. Our terms and conditions are also clear in that anything posted on Cancer Chat must be accurate. We have addressed the myth around artificial sweeteners in this article but we do appreciate that you might want to try anything if you think it might help treat or cure your cancer.

    Only you can decide whether to use an alternative cancer therapy such as herbal medicine, but it is important for anyone reading this thread to be aware that they could harm their health if they stop their cancer treatment for an unproven treatment. What works for some people might be unsafe for someone else and so we have a legal responsibility to ensure that conversations on Cancer Chat are not seen to be encouraging or advocating anything which is unproven. There are some useful guidelines on our website for ensuring you use complementary therapies safely. Some websites might promote herbal medicine as part of treatment for cancer but no reputable scientific cancer organisations support any of these claims. 

    We hope that helps and that some of the links we have shared have been useful. There is so much misinformation and contradictory information on the internet that it is important to use trusted resources such as NHS, research charities or government websites, particularly when researching your health.

    Thank you for your understanding and we really do wish you both all the very best with your treatment.

    Kind regards,

    Steph, Cancer Chat Moderator