Introduction - 56 years old, stage 4 - bone mets, lymph node and likely lung involvement

Hello Everyone, it is great to be part of this group. I have been suffering pelvic pain for close to three years and very unfortunately, went to a urologist who diagnosed me with pudendal neuralgia. I was treated for a year and one half and when the pain did not improve, I had a pelvic MRI. It clearly showed a very large tumor on the left side with the seminal vesicle also being invaded. I had bone scan and CT which showed two spots on the right side of my pelvis, possible nodal involvement (one node) in the pelvic region an a possible soft tissue lesion in the same area. The CT also showed some "branching" in my right lower lobe of my right lung. The radiologist as well as the oncologist suspect prostate metastasis, and I have a biopsy scheduled to confirm. I have been on Casodex (50 mg per day) for 4 + weeks, and had my three month Lupron shot two weeks ago. The pain is dissipating rapidly and my "slow flow" is getting much better. My question is, although I am going to a top cancer center in CA, I feel that, even though I only have approximately 5 or fewer areas that have been impacted, my oncologists all do not seem to have a progressive plan (possible radiation or surgery). The only course of action is chemo, Lupron and Casodex concurrently, but nothing else. At a prior clinic that we decided against working with, they had planned on shrinking the tumors and then radiation. My current oncologist stated last week that he feels that the cancer will just pop up again, so they should just leave things as they are. I also should state that my PSA, before treatment was 8.8, my Gleason score was a solid 8, and 11 of 12 samples of my prostate biopsy were cancerous and the 12th was suspicious. I have moved to pretty much a vegan diet, exercise very consistently and feel pretty darn great. I am just wondering if any of you have any suggestions as to another course I should be on. Thank you all very much again!

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  • Are you planning on doing chemo soon? The standard treatment starts with Casodex, then a few weeks later, the Lupron shot, followed by 6 sessions of Docetaxel chemo, and then continuing on just the HT (Casodex pill daily + Lupron shot every 3 months) until the HT no longer works (average time is appx 2 years, but some have been fortunate for 10+ years!! Hoping and praying we can say the same!! ). My husband was diagnosed about 2 months ago w/ stage 4 PC - mets to bones (spine, ribs, pelvis & skull) about 2 months ago. He is being treated at U of Chicago, where we went for a 2nd opinion. They have a great prostate cancer team!. We also went to Johns Hopkins (3rd opinion) where this treatment plan was confirmed, which was very reassuring.

    fwiw, We were shocked w/ the diagnosis, as he had no prostate cancer symptoms at all!! - just from the bone mets, which, at first, weren't unusual for a 60 yr old - ie.,some lower back pain, and his PSA was only "mildly elevated" at 5.85. All the MRI's and CT Scans, blood tests, etc showed he was otherwise "very healthy" (Dr's words), -no other signs of a primary cancer. Dr's at first strongly suspected Multiple Myeloma, until later tests ruled that out, then they considered skeletal sarcoidosis. I was hoping (and praying!!!) something more benign after learning fungal infections (ie., blastomycosis, which is found in our area) can also cause bone mets throughout the skeletal system and look like metastatic cancer. It wasn't until we did a bone biopsy that Stage 4 PC was confirmed. The anxiety and stress while waiting for the biopsy results was agonizing. After waiting more than a week!!!, and making several calls to the oncologist, asking if results were in YET, the shocking news finally came via a 6:30 a.m. wake up call on a Thursday morning, and didn't have time (a short time!) to meet with us until Friday afternoon. We were livid when we discovered the oncologist had known the results since Monday!!! NO excuse, esp given this was at a major, prestigious hospital.

    I really appreciate the thoughtful posts and all the valuable information everyone has been so kind to share here. This is a great site.

  • Thank you very much for the reply and sharing your life. I am really sorry you and husband are going through this, especially the shock, the delay and the manner which you were told. I share the two month diagnosis with you and have come to grips of the reality of the situation. I think a PC diet, positive mental attitude (easier to say than do), exercise, and being around positive people is a recipe for a much greater outcome....of course, in addition to the proper treatment. To answer your question, yes, I will be on chemo in early May, I am sure. I wish you and your husband the very best of luck with your adjustment to life and a very successful treatment regimen. Thank you again.

  • I wish you well in treatments also..With your good attitude that promotes a good outcome..Keep sticking around !

  • Most of us have some crazy story about Doctors.what an ordeal...We will probably have more to tell as they are a nessesity w/advanced P. C. .wishing you both well!

  • I can echo the reply from JLS1. My husband was dxd 3+ years ago at age 52. No other symptoms but one day got severe hip pain -- the orthopedist gave him the cancer dx. He went straight to a medical oncologist from there. Multiple myeloma was also in the possible dx for him at first but the likely and then proven culprit Prostate Ca with distant mets, so stage IV.

    It's hard at first because it seems like they recommend not doing much. It's like -- why not radiation? cut it out? Why don't you want to *do* anything? Truth is -- the testosterone reduction/elimination does an awful lot for prostate cancer in general, even advanced/severe PCa.

    And, once the ca has spread, it's not worth removing the prostate (and all the complications that can go with that -- we've hear this repeatedly from Prostate experts -- we use UCSF as our expert consultant group -- we've also heard from post-surgical prostate ca patients (at earlier stages) who regretted not waiting longer before doing the surgery because of complications they suffered).

    But now -- there is early docetaxel chemo (based on the CHAARTED study that was done about 4 years ago). The theory is (and proved pretty successful) that going after the really aggressive parts of the tumor early would increase life expectancy. What was hard for us after 6 chemo treatments is that the results were not stellar, and his PSA started creeping up after a few months. BUT that was over 2 years ago, and he remains "freakishly healthy" (our term for his otherwise good health). Our theory (and the expert onco thought it might be the case): the chemo did work and it is making the later treatment (Xtandi at the moment) more effective. Just had scans and bloodwork and is pretty stable.

    In retrospect we did a lot once the Casodex failed (after about a year): chemo was during the Casodex, but then we did immunotherapy, a small bit of radiation (see below), Xofigo/RA223 (4 doses of 6) and now Xtandi, plus the usual Xgeva and Lupron 90 days. Gosh are we happy to have good insurance.

    On radiation -- esp. for the bones -- it is only for palliative purposes. My husband had a small section done on his back. We went to the OncRad twice before we decided it was the right time to do some radiation. Radiation will hit the marrow and kill it, so that's why there is hesitation on the radiation unless there is significant pain. The pelvis is a little trickier because it's a big bone with a lot of marrow that would be exposed. The back was less of a big deal.

    We were in a similar place a few years ago, and we are in a much better place than we envisioned we would be at this point in time -- entering year 4.

    Oh - late last year my husband had some urinary issues. He had a laser ablation procedure, and that helped quite a bit.

  • Hello, isn't it believed by some or many oncs that removing the gland even after metastasis would lessen the disease by removing the "home field" for the cancer? I'm not an expert, just another fighter/patient.

  • We have not come across a prostate cancer specialist oncologist who advocates removal. But it took a while to believe it wasn't worth it!

    It helped us to understand that all of the cancer (unless you've got 2 different cancers going) is prostate cancer, so the prostate is not the sole source any more. The dang tumors start making their own testosterone to feed themselves!

    Also -- at UsToo support group, we did hear about men with lower grade cancers who opted for surgery (or radiation) at an early stage (when they could have chosen watchful waiting) and regretted it because of the complications -- urinary incontinence in particular (for two years for one guy).

  • If you were to consult with Dr. Pisters at MD Anderson, you might get a different answer. I'm told that there is benefit in removing the cancer's home court.

  • Hi Caring7. Thank you for the real good information and yours and your husbands story. It appears that my treatment very well mirrirs your husbands. I greatly appreciate your encouragement and it seems things get a little easier every day. Thank you again for sharing what you both are going through and i wish you the very best for your journey!

  • Wow

  • With regard to that first urologist who misdiagnosed your problem -- oh I best not tell you where to aim your kick.

  • Hello and welcome. I really would just like to know if the Urologist who mis-diagnosed and mistreated you for one and a half years, was he part of the top cancer center that you are now attending in CA? Would you mind to share where you are being treated now as I am in CA and looking for a good cancer center but I do not want to meet the Urologist!

    Thanks and good luck on your Journey.

  • We have used UCSF as a consulting clinic. Dr. Eric Small (GU Medical Oncology) - who has been really helpful for us.

  • Dr Small is one of the best of the best.

  • If you consider HIFU as a treatment option, I can vouch for Dr M J Lazar. Surgeries performed in SF.

  • Hi Sinjonn, thank you again fr your reply. I wanted to make sure you saw my earlier joint reply that mentioned that the urologist who mis diagnosed me is located in Union Square and specializes in pelvic pain. He is not from where I am being treated now. I have been happy with UCSF so far. While in no way may we depend on our medical team entirely, they seem to be the best out of the 3, fairly deep opinions we received since diagnosis. Best of luck and wishes to you.

  • @stickinground1.. Thank you for letting me know. I did miss the earlier post.

    Unfortunately I am in LA so SF is too far to travel for me. I too had a resident urologist who had an attitude and unfounded delusions of grandeur. The procedure he did was painful whereas the same stent replacement done by other doctors was pain free. When I questioned him about it he said " Don't worry next time you will get a much more gentle Doctor than me" WTH.

    In my 3 years since dx with gleason 9 and PSA 108 with bone mets and visceral metsI have just about failed every medication within 6 months. Lupron, Casodex, Xtandi, Zytiga, Xofigo, Docetaxel, Cabazitaxel, Palliative Radiation to various areas, etc. etc.

    I tried to get my Onc to prescribe Keytruda but it is not on their gold standard list so wont do it. My psa is still over 125. That's why I was wondering where you were attending in case it was near.

    Anyway thanks for your reply and I will keep searching and maybe someone else can help me with a friendly Onc in LA.

    Also if there is someone reading this that is already in a support group in LA

    perhaps they could let me know as I am looking to join one that comes recommended.

    All good wishes to you and everyone on this crappy journey. Thank you. Sinjonn.

  • There is a Very significant UsToo affiliated Prostate Cancer Support Group in Fullerton, CA, and another in Long Beach, CA.

    For details, See:

    ustoo.org/Support-Group-Nea... States/California

    prostateforum.org/

    I attend a few groups in the Northern California region in the vicinity of Sacramento. Each has its own different "flavor", and different mix of men, care givers, adjunct professionals & semi-professionals, resources, and various guest speakers, agenda items, and times set aside for newly diagnosed and recurring/advanced prostate cancer. I've been attending such groups for 2-3 years, now. Each meeting is different, and there is always something unexpectedly new to learn or to share at each one.

    For anyone who lives in the L.A. area, the annual Prostate Cancer Research Institute Conference is also very informative, often lots of fun, and easy to get to. PCRI Conference 2017 - September 8-10, Los Angeles Airport Marriott. Lots of people fly in, too, and stay at the venue.

    Open for registration, with the agenda still in progress:

    pcri.org/2017-conference/

    Last year's featured speakers & topics:

    pcri.org/2016-conference/

    Charles

  • @ctarleton.... thank you so much for the info. I am close to Fullerton so I will try the support group there.

    Best wishes. Sinjonn.

  • Welcome. I agree with the other Replies that you ask about an early 6 rounds of chemo with docetaxel, consistent with the CHAARTED Clinical Trial results. You are younger and stronger now. Your PSA may respond quite well as the Lupron kicks in (mine fell from 5,006 to 2 within 4 months). If you have any concerns or questions about what you are feeling after going on Lupron, don't hesitate to share them or ask about them here, or with others who have been on Androgen Deprivation Therapy for a long time already. If you have confirmed bone mets, ask and learn about either Zometa (zoledronic acid) or Xgeva (denosumab) treatments. I had very many bone and lymph node mets from the very start, 3 years and 5 months ago. Virtually none of the regional doctors or specialists I've encountered have been at all keen on the concept of "debulking" a Stage IV prostate cancer burden, especially if it may involve one or more large bones like the pelvis, or spinal bones, in addition to lymph nodes and the original prostate. Attending local support groups can be very helpful. Talk early and often with any spouse, partner, or close family or other support people. UsToo has an on-line directory; many local hospitals/cancer resources centers do, too. Ask about Immunotherapy options, such as Provenge, which, if they work for you, may have a longer time to work if started early, while disease burden is lowest. If they have biopsy samples, ask about Genetic Testing options. Farther down the road, learn about some of the other treatment options, such as Zytiga, Xtandi, Jevtana, Xofigo, etc. Consider going to Prostate Cancer Conferences, e.g. PCRI's each September in Los Angeles. Meanwhile, .... hang in there. The first few months after such a diagnosis can be a whirlwind of emotions, and that's completely normal.

    Charles

  • That's a great concise post of the options, and my husband went through all of that -- through Provenge and up to the Xtandi where he is now (for over 1-1/2 years!) Just as you suggest -- we think the early treatments are paying off now (although they didn't seem to have great immediate results). We still have abiraterone in the wings.

    I have to add that this forum has been really key. I'm sure all UsToo groups are different, but our local group -- there was no one with advanced stage, and so it was hard to get this kind of direct support. It took me a while to find this online group but sure glad I did.

  • Caring7,

    I often attend the Yolo County, Sacramento, Roseville, and Cameron Park groups, myself. The Sacramento group has the most men with Advanced PCa. I, too, have recently consulted with Dr. Eric Small at UCSF, besides local Oncologist & scan/tests providers. Initial diagnosis PSA 5,006 three years and five months ago. Lupron, Zometa, PSA Nadir 1.0, and below 5.0 for around two years. Third year PSA climbed from 5.0 to 94.8 while doing various consultations, some Provenge, some familial genetic testing, PSMA PET, etc. Added Xtandi at three year point. PSA dropped from 94.8 to 5.0 in 4 months. Current age 68.75 years. Live in Folsom, CA. Pretty easy to find public address & phone on Google.

    Charles

  • Thanks for the referral groups. Unfortunately (well . . . ) we live in Hawai`i, and groups are limited. But it's good to know that there are groups out there that have different configurations. We consult with Dr. Small about 1-2x / year. Gosh the huge PSAs must be hard to deal with. My guy's was never very high -- around 40, and he breaks a sweat now if it goes over 2.0. He only made it through 4 of 6 RA223/Xofigo treatments because it was just kind of hard on him (like Chemo). We think the Xofigo might have been effective on the diffuse "spreckle-y" mets he had in some areas.

    Did Provenge too, did OK until he had a reaction on the third/last dose (flu-like symptoms that took him to ER for tests and fluids, but he was OK).

    thanks for reaching out -- sounds like you are in a pretty similar boat and timeline.

    p.s. our experience with Dr. Small is that he is awesome in person, but a little hard to deal with via the online response, although his staff is really great when we contact them from off-site.

  • Thank you ctarleton. I appreciate so much the life experience you shared. From the onset, many people seem to think prostate cancer is always contained and for the most part, are unaware of the gravity of the situation. I came into this a little disheveled, but hearing from people like you as well as the advice and experience you share, helps tremendously. Best of luck for you as you travel down this path.

  • Hi Again everyone, I cannot thank you all enough for all of your replies with the great information. I have learned so much that I could not have found researching alone. You confirmed that I am on the right path, but at the same time, provided me with several other options and ideas as I go down this road. I am meeting with the oncologist in early may and he has already discussed chemo in addition to Lupron/Casodex (I think I have now made up my mind to do so). I believe this Tuesday, it will be 5 weeks since I have been on Casodex and it will be three weeks since my Lupron injection. I think that the only real side affects I am feeling is that it takes a good couple of hours for me to fall asleep. In addition, I was pretty tired during the day, but consistent cardio and weight training have mitigated that. I have lost some muscle mass, but my strength seems not to have diminished at this time. Overall, the extreme pain that I had in my prostate area, femur and pelvis have diminished by about 80% or more. I also went in for three zaps of radiation to my chest area to prevent potential gynecomastia. In addition, I am being treated at UCSF. I had planned on going to Stanford and UCSF was actually a "plan b," but after first meeting with the surgeon at UCSF, it became clear that they had a very good handle on prostate cancer and entire renal area. Also, sinjonn, to answer your question about the urologist, he has a single office in Union Square in San Francisco and specializes in pelvic pain. Again, thank you all for your great help and support. I feel a lot better knowing I am traveling down this path with all of you. I am definitely new to this being diagnosed just two months ago, but hope I can help some people on this forum as you have helped me. I really appreciate it. Thank you very much again!

  • In my research 3 years ago, UCSF has a stronger prostate ca program than Stanford.

  • My husband had that sleeping problem too and he tried taking it at different times of the day until it worked out.

    Good luck with everything!

  • I'm into my seventh year of living with PCa. I had a radiical prostatectomy only to find out a month later that i had bone mets at my spine, pelvic area, ribs and lungs. At the time i was scared and did what a doctor and surgeon recommended. In my opinion the doctor doesn't always know what's best. Lungs have since cleared up. PSA has been as high as 498 over that span of the seven years. I am very active and in the beginning only resorted to medication when I experienced bone pain, as I felt and still do that quality of live is utmost important to me. Cancer has since spread to left knee and shoulder but I'm still very active. I recently went back on medication after being off for seven months because I recieved a wake up call, called pain, my psa was 122. I acually feel more optimistic now than I have over the last seven years. I recommend Dr. Charles Myers book "Beating prostate cancer: Hormonal therapy & diet" helpful. He was diagnosed with PCa and aggressively attacked it and has been in remission for many years. I also recently found a doctor who is opened to information provided from me in addressing my treatment. So it is a two way street in deciding my treatment. I have been to many oncologists over the years at University of Virginia (Charlottesville), John Hopkins, Mary Washington Hospital and currently at INOVA in Fairfax VA. From my experience, I have found that most doctors are the from the "I know what's best for you school". Yesterday, I skated (inline skates) 24 miles with a group of friends, I'm 59 and no one in the group would ever suspect that I had any medical issue. I believe the book mentioned above and an open minded doctor will give you hope too. Good luck

  • Hello Skateguy, your very first sentence and your close summed up your entire reply. So far, one of the largest challenges is overcoming peoples stereotypical thoughts equating cancer to hopelessness. I am doing everything I can do live my life and be "normal" and your skating 24 miles 7 years later is just awesome. Tanks again for the reply and motivation. Best of luck, but I feel you just may not need it the way you are thriving!

  • My group, believe in debulking the main source. Taking the thing out. I was/am a Gleason 9, with all cores 100%. Most would not attempt surgery, due to my age, But my fitness allowed going forth. That left the dealing with the escaped Micro-metastatic Cancer cells. After Surgery, my PSA was higher than yours upon DX. I was 7.4 after surgery--that is how much escaped. But we got lucky, as there was no bone mets, or lymph node invasion yet. This disease is many diseases. Suggest, learning all you can about the pathology, and getting Gene Mapped to determine what Mutations exist. For in the future, there could be the use of targeted drug therapy, against the mutations. I have 2 Mutations--and one targeted drug now exists for one, and none for the other yet.

    I use a substance, that does not allow the cancer cells to express Galectin-3---which is what cells need to stick together, and form highways, hotels, and Burger Kings, to make Testosterone. This material is in Phase 2 In Israel, and 3 in the USA. Also I use a series of Supplements that have shown to kill Cancer Cells in Vitro, and In Vivo. Human trials just a few, are sketchy, Like D3--but in my mind if you can kill in a test tube it might work inside the body, and what the heck, usually supplements will not kill you.

    [BUT, BUT], here is the rub: there is soft tissue and bone invasion--so systemic treatment is usually called for as indicated by others who posted. That usually means getting the cancer sensitized, with ADT, and banging away with Chemo. I hate Chemo. And will avoid if I can. But you may have no other choice, other than some Immunology drugs like Keytruda.

    It would appear, in my opinion only, as I am not a Doctor; that refractive, stem cells of the cancer have gotten out from the main source---the prostate, and they have gotten quite active. Meaning if we could measure all the cancer, via PSA, the number would be higher, since refractive stem cancer cells do not usually produce the antigen that can be measured, as PSA.

    There are lots of time and alternatives---just make sure you have a good team. Some Oncologists get Burned out, as they are dealing with all kinds of cancers, My recommendation is to deal with Those who's clinical interest is prostate cancer. I hear, even though in N.C. the Compassionate Oncology on the West Coast, gets some interesting results, and use a lot of alternatives, and are agressive. As I said I just hear!

    Not wishing you luck, for I believe the answer is with God. So I have taken a moment to pray for you all.

    Nalakrats

  • Nalakrats, thank you for the insight. it is much different than what my medical team, as well as the other teams I have been dealing with over the past couple of months. I think, from a logical aspect, and some of the reading I have done, especially since my prostate had 11 of 12 cores that were positive and viewing the MRI myself, I could easily see the pretty much the entire prostate was cancerous vs being composed of any semblance of normal tissue. I will absolutely explore your school of thought and again, very much appreciate your advice!

  • I like you am 56 and have been in the P. C. Bus for 2yrs.I was not a candidate for surg due to mets ,prostate blown out into urethra bladder and 2 lymph nodes..At first I was told I'd receive chemo for six months and w/ADT I would live for 39 months.My ono was a master and I did RT instead of chemo..whooo that was good.I also went all in with my naturalpathic ono from day one .After a year =no signs ,same Dr . Tells me I've got 30 yrs..They all say whatever you're doing keep doing it..So I am...I want to live..I have love in my life..If you have that, you can make it ..If you don't have love you better find some .. you're going to need it..Even if it means getting a puppy .. I did.. best decision I ever made for both my wife and myself. Keep a positive mind..Easy to say but once they start messing with your hormones it can get dicey emotionally..Keep a sense of humor to remain sane..The fact that you are seeking answers Leeds me to believe that you can do whatever you feel you have to do to beat it..Remember things can always get worse no matter what stage you are at.I believe if you keep faith you can make things much better at least and many have beaten it..That's the hope for all of us..

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