Just left the radiologist-newbie,in need of encouragement

Welcome to HW, sorry you need to be here.

It's an emotional hit when you get that kind of news. Best way to deal with it is to learn all you can about PC. Check out the sticky thread at the top of the forum for lots of good info to get you started.

We could give you better feedback if you could give us some more information. What was his PSA and gleason score? Stage 4 could mean a lot of things.

Next, confused, yes you'd be confused at this point. We all were and still are to a certain extent.

Devastated? Likely you're reading more negative into the situation that there really is. PC is very treatable, even in later stages. We have members here who've survived for many years after troubling diagnosis. There is always hope that they can keep the PC at bay for a long time. In the last few years there have been many new treatments available and lots of reason to hope.

And if it's truly staged at 4, you should be talking to more doctors than just an RO. At that point consulting with a medical oncologist who specializes in PC would be good. If you're to tell us what part of the world you're in, the folks here could make some recommendations on who is close to you.

It not going to be easy to get through, but there are plenty of options and even though normal will change, life will go on.

Hang in there,
Andrew

Hello Thommy2458 ---

Here we are for you --- all of us --- this is a tremendous source of information --- most importantly, we are here to provide support, answer questions, provide some first-hand treatment experiences, and to provide solace.

This is a tremendous network of members from every "corner of the country" --- tremendous insight and expertise --- we've got veterans here who have been "on the field of battle" for many years. We've also got loyal members here from across the globe --- everyone WORKING TOGETHER with the collective goal of sharing our treatment experiences --- to help one another.

You're in the middle of a hurricane of emotions right now ... a whirlwind ... a prairie cyclone ... we understand. We've all walking on the cobblestone path that you are now walking ... we're here ... we'll light the lanterns for you, and help you as you start walking down this path alongside all of us ...

First thing I need to say ... we're ALL IN THIS TOGETHER ... you're a new comrade ... we don't leave comrades behind on the battlefield. Right now, I can tell you need some comfort and solace ... and most of all ... some HOPE.

In time, the "dust will settle" a bit ... clarity will follow ... you'll get educated about the diagnosis you are facing ... your doctors will suggest treatment ideas and options for you. Form a close bond with your doctors ... they are essential ... they become lifelines and saviors in this fight. Over time, I've put together a "dream team" of doctors comprised of my original urologist, my medical oncologist ... and now I've added a urology oncologist whose EXPERTISE is advanced prostate cancer.

You'd be surprised how many of us here have advanced cases of prostate cancer --- we are pursuing our treatments --- but we are living full lives --- working at full-time careers --- pursuing our hobbies and interests --- traveling --- and maintaining a full social life. You need to hear that right now ... I'm one of those people.

You're going to become a fellow "soldier on the battlefield" fighting right alongside the rest of us ... there's comfort in that ... we're your comrades already ... you've just joined an ARMY OF FELLOW FIGHTERS. Luckily, your doctors WILL have some WEAPONS OF ATTACK to help you in this battle, too ! Powerful weapons !

It's important to say this, since you just posted today: "Right now, starting today, YOU ARE NOT ALONE!"

I know where you are at right now ... I am a school teacher and I teach elementary youngsters ... I got my diagnosis shortly after the school year began ... it was "Back To School Time" and I was so excited to get another school year started. Right then, I received the news of my diagnosis and thought, "Will I even live until Christmas time?" That's the fear that's inside you right now, I'm quite sure ...

Starting immediately, I went into battle --- you're going to do the same --- and we're going to be right here for you. I started ADT hormone shots to start battling my cancer --- I then decided to pursue the "early chemo" treatment plan to add another weapon of attack against my cancer --- and since then, I've added a breakthrough medication known as ZYTIGA, which has helped me maintain my health.

Being in this battle ... you're going to face physical and emotional challenges. My best advice ... it's simple, but it's POWERFUL ... build a mighty network of support. Stay in close contact with your family, friends, and faith, in whatever form that takes for you. Work colleagues, neighbors, old classmates, community members, church members, club members ... all of these people in your life ... you need them, going forward. My desk drawers in my classroom at school are jammed FULL of the letters, notes, and cards of support I have received since my diagnosis.

Never forget ... this WEBSITE right here is a TREMENDOUS source of support !

I've been in this battle for three years --- honestly, I feel great --- you need to hear some stories of HOPE right now and I'll share mine ... we all realize each person's story is different, but it's important to hang onto hope when you've just gotten a health diagnosis ... so, to let you know that there IS hope ... I just got my latest PSA score today and I started out with a PSA score of over 100 three years ago --- today, my PSA score was all the way down to 0.01 --- which I consider a small miracle, based on where I started.

I'm up late every night --- I have 100% of my energy --- I work on volunteer projects --- I teach school all day long and love every minute of it --- I exercise daily --- I stay up late into the evening --- I have a full social life --- and I give THANKS every day for all the support and prayers from my family, friends, teaching colleagues, community members ... and ESPECIALLY my school students, who have supported me every step of the way through all of this.

Some advice, since you described an advanced case, which is a common thread with my story --- seek out top-notch medical expertise for your case --- make sure you have an oncologist who specializes in advanced prostate cancer. In my case, I added a specialized UROLOGY ONCOLOGIST --- they are to be found at larger medical facilities --- they specialize in advanced prostate cancer cases. All of my doctors work together as a TEAM ---sharing my test results, my medical documents, and the results of my scans --- they communicate and coordinate my entire care plan. We ALL deserve the best doctors we can find --- make sure that you have top-notch doctors.

I just wanted to reach out to you with a message of HOPE --- we all need that --- I like to think of HOPE as being that darkened lighthouse on the edge of a stormy coast --- and finally, someone climbs the winding staircase inside that darkened lighthouse and lights up the BEACON inside ... that's what you need right now --- some hope --- a shining beacon. Maybe there's something in my story that shines a beacon of hope for you tonight ... we all need that. Lots of stories of hope found right here every day ... that's why I check in here often !

It's important for me to tell you this, as well --- there have been tremendous strides made in treatments in the past decade. Some time ago, I read an article that stated this was the "Golden Age of Prostate Cancer Research" in terms of new medical advancements, compared to decades ago when very new advances were being made.

New approaches and breakthrough medications have emerged in very recent times, and there's no turning back. My doctors have already used some of the new treatment approaches in my case, as well as a new breakthrough medication ... ALL of those things have resulted in some meaningful treatment successes for me, along the way, for which I am very grateful EVERY single day. Last spring, I celebrated 25 years of teaching ... daily goals lead to MILESTONES in our lives, as you can see.

Some simple advice ... keep busy ... stay active ... remain positive ... keep facing FORWARD. There is an old proverb that I love and it says, "Believe in the SUN, even when the sun is not shining." I realized the other day, I have lived to see 1,000 sunrises and 1,000 sunsets since I was diagnosed. I feel fortunate every day ...

Let us know how you are doing, as you continue to learn more details about your case ... let us know what treatments you are considering, based on your doctor's best recommendations ... that's when the members will chime in ... sharing their treatment experiences that will match yours.

Wanted to reach out to you with a message of concern, compassion, encouragement, and most of all ... HOPE!

Handshake of friendship, from across the miles,
CYCLONE FAN ~ Iowa State University

Hello Thom,
Welcome to the site. In 2008 I was diagnosed with similar characteristics as your husband. My PSA was 21, Gleason score 4+3 (7), 100% of samples had cancer, DRE lump on left side, and iliac and obturator nodes swollen. I did not have insurance and that played a large part in my decision. It was recommended by my uro to have surgery followed by radiation and HT. I also received this same advice from a top physician at Mayo. The cost of this treatment regimen was more than I could afford so I went with the radiation and concurrent HT for two years. My odds of a cure were 20%. I have done several HT rounds and drugs since. Pretty much on Lupron for all but six months of the entire 8 years. I reasoned that surgery was not a cure if the lymph nodes were involved and that radiation + HT gave me the best odds. The nodes could and were treated at the same time as the prostate.

Here I am eight years later and I am now in the middle of chemotherapy. Not sure how it is working. By the way they are recommending early chemo these days and it warrant discussion with your doctor. I developed lung mets three years ago and bone mets in my spine about four months ago. Radiation of the bone mets has relieved the pain. None of the doctors recommended treating the lungs. I did a trial and the drug did shrink the mets a bit. The drug is Xtandi and is available commercially.

When I joined there was another member who's stats were almost identical to mine. Not sure about the nodes in his case. His name is Tony Crispino and his results were considerably better than mine. He did surgery, radiation and HT and I believe is cancer free today. He still checks in and is active in patient advocacy. You may want to see if you can touch base with him.

There are better imaging techniques today so you may want to inquire about scans to locate the cancer and confirm the nodes and no distant mets. Caveat is there could be micro metastases. Used to be a real good scan that used iron particles but it was only available in Europe. You want to look at a good PET scan with one of the nuclear contrast agents. F-18, Choline (only at Mayo I think). There are others. Get all the information you can about where the cancer is in the body before making a decision.

There is another member here who is quite knowledgeable. Tall Allen. I am sure you will here from him. If not look him up too.

The situation is serious but not hopeless. Don't be rushed into a decision. I think I let my uro scare me a bit too much. Keep us informed on progress and good luck to you and husband.

Don

I came here in my high emotional state for a shoulder,an ear and some back patting but I got so much more. I could barely get through the responses without losing it,so I will be back soon and I will try to find the answers that have been asked of David's history. But please know that I thank you profusely for the kindness you have shown me. There is so much more to learn and I have a long way to go,but I feel with the knowledge here on this board I now can be better prepared. Stay tuned and thanks again

Thommy, you've gotten some great comments above. I'd just expound on one of Tall Allens comments, and btw, i'm not the most knowledgeable here, far from it, when it comes to stage4, but like most everyone here, I've been through the wars, and survived better than i thought i would when i was first diagnosed. FWIW.
So just to expound a bit, in most or at least many cancers, Stage 4 implies that it is terminal and at the final stages, i.e. closer to the end, than the beginning, of the journey. Generally speaking this is not the case with Prostate Cancer. Even advanced, it tends to not spread as fast. And there is MUCH that can be done, and more coming down the pipeline very rapidly.

So as shocking at "stage 4 cancer" is, don't despair, there is plenty of hope. The most important things you can do, are, get educated, be your own advocate, and get to the right experts for treatment. We can help you with all of that, along with the support we all give each other.

Good luck, and please stick around

Thom, I want to reiterate a basic principle that we have all learned in this forum, namely that even highly involved Prostate Cancer is survivable, maybe even curable. No doubt, this will be a battle for you and David, in the end, however, there is a great chance that he will live with it for a long time, and will die of something else .

Also, a great place to start to find the medical expertise you desperately need is to get yourself to a top medical center. If you're in the US, google search for "NCCN Cancer Centers", and find one near you. They're all over. The coolest part is, these top docs all know each other, and they are surprisingly accessible for phone or email consultation, even if they are not near you.

Hang in there, and keep posting.

Take a breath. It is hard when they tell you you have Stage 4, I know. There are a lot of people here that have Stage 4 for decades. First, for prostate cancer there is Stage 4 D1 (spread to the pelvic lymph nodes but no forther) and Stage 4 D2 (spread past the pelvic area). Both are bad, but Stage 4 D1 is not as bad. Recent studies have shown that S4 D1 should be treated aggressively. Surgery should still be considered. That is what happened to me. I had to plead with the surgeon to operate as the first treatment. I had surgery last April where they removed the prostate and 15 pelvic lymph nodes. The pathology report showed one of the of the lymph nodes was "100% cancer. I am now on hormonal therapy and will start radiation in two weeks. In two days I will be doing a two day 80 mile bike ride and later this year I will be SCUBA diving with my wife.

Keep positive and do not be afraid to push the doctors for options. Best of luck

Thommmy, many doctors have the opinion that once it's in the lymph nodes, then metastasis is happening, and surgery is of little value. Certainly the standard, once it's at that point, is hormones + radiation (and the radiation comes in multiple 'flavors' if you will.

Others in here will be able to be more specific on that question.

As far as your 'family' opinions go....having a second set of eyes on the scans is always a good idea. Asparagus? I like mine grilled with a squeeze of lemon juice. Will it wipe out cancer cells? Who knows, but it's still good.

Others will also check in with information about specialists in your area. DO keep asking for copies of his reports. It's a good idea to get a big accordion folder and a notebook to take to dr visits to take notes and write down questions.

Todd-What an amazing story and your recovery has indeed given us hope! Thank you halbert for explaining that,I think you are right about metastasis-i think he mentioned that,but I looked blankly back because I didn't know what it was. But tomorrow I will ask his urologist just to be certain. I'm so relieved about all your stories of stage 4 recover-you guys are helping me get out of this black cloud and I can't thank you enough.

Be sure to get the biopsy report too.

I wish I'd known about the asparagus cure.

You will find, as we all have, that friends and relatives are well meaning, and all have "heard" one thing or another. Part of getting through this is adapting to the pressure of all of that.

It is really hard for me or anyone else to answer questions like "what about surgery?" until you are able to supply more data. You are just starting to understand the importance of keeping files of all your medical data. Computers make the job pretty easy - I scan in paper I receive, and I keep copies of everything in an online folder for easy access. If it's in my computer and I forgot where it is, I can just search the subject to find it. I bring my laptop to doctor meetings. I prefer that to flipping through "unsearchable" papers - but everyone is different - whatever works for you. But you must keep copies of all the data. This becomes really important when you talk to a new doctor - I just email him the files.

You can tell his niece that surgery can be problematic in advanced cases. Surgery is not useful for removing cancer that has grown outside of the prostate capsule (stage T3) or has grown into surrounding organs (stage T4). If it is truly contained within the prostate (stage T2), surgery may be able to get that part of it. The cancer in the pelvic LNs is theoretically possible to remove via a procedure called an extended pelvic lymph node dissection (ePLND) done along with a prostatectomy. But it's difficult to do that, requiring fluorescent dyes to help find all the little nearly-invisible lymph nodes. They need to get all of them, not just the 2 that look suspicious on the MRI because lymph is a fluid, and microscopic cancer cells are carried in the lymph. You have to remove the cancer you can't see on an MRI, as well as the cancer you can see.(See Dr WHO's post: because they found cancer in 1 of 15 removed LNs, they now have to go back and radiate the entire area. Radiation on top of surgery carries side effects that may be worse than if radiation were done in the first place. BTW- he is using a different staging system than most use in the US - this can get very confusing) ePLND carries a danger of lymphoceles and lymphedema. Not every surgeon has the experience or the tools to do this, and we don't have long-term data yet. As I said, whole pelvic radiation is an option that most any good RO with the right equipment can do, but we await long-term data from randomized clinical trials for that too.

Also- you may not be serving your own best interest by giving up your power to a doctor by telling him to "do whatever you think best." That's your decision to make, not his. You can talk to a variety of specialists until you know which is the right thing for you. All treatments carry risks of side effects, and all treatments have certain probabilities of controlling or slowing the cancer. Treatments have psychological implications as well as physical implications. Only you are in a position to know what is most important to you. The doctor is there to advise, supply info, and expertise, but not to decide.

- Allen

don826 said...
If I may add a bit to TA's message. I had the full pelvic as well as the prostate focal radiation. IGRT/IMRT with Varian True Beam. For years I felt that something was missed because my PCa returned so rapidly. about a year ago I was accepted into a trial at NIH where they do extensive imaging. I could not get my doctors to order a test and still am not sure why. Anyway, the scans showed that there was no cancer in the area originally treated by the radiation. Had the lymphatic system not already been infected I would likely have had much better results. As I noted in a earlier post I eventually developed lung mets (lymph node right between them also) and spinal bone mets. So, the cancer had spread before treatment but was not visible on the scans at the time. It took eight years for the bone mets to show up.

Don

Don, you describe the situation my RO said for risks after that kind of treatment. My treatment plan was the same as yours, but with a Varian Trilogy with RapidArc. The questions about recurrence had the same answer, if it happens it likely won't be a local recurrence, and rather development of existing undetectable metastases.

Thank you JNF (and again,everyone else) because there is so much technical information,I'm still a bit overwhelmed. Because I suffer from anxiety and panic,I worry and obsess and it's not doing David any good to be concerned about me. What makes me strong and feel like we have hope are your success stories. I think I've reread them over and over the past few days. And Tall Allen explaining that stage 4 is treatable are things I need to hear. Once I can get over this hump of "what ifs" I can get focused and be more of an asset.
How did you and your spouses,families not worry and get focused? At one point did you say " enough worrying" and feel confidant you were going down the right path?