Well….I feel like Shirley MacLaine ("Out on a Limb")
I have been going to oncologists for six years. The first year was one of hopeful, optimistic treatment with radiation for Gleason 6 Prostate Cancer that they felt was contained and only in a couple of cores of the biopsy.
Then after my PSA never went lower than 1, it became a year of worry, fear and frustration.
Finally, it became the “year of stage 4”. Chemotherapy, castration and concern were my life…and then Provenge and Xtandi.
So for the last 4 years I have heard nothing that gave me a glimmer of hope for living more than 3 to 5 years. My oncologist never gave me eye contact.
Going out on a limb. I decided a couple of months ago to change from my long-time oncologist, a man in his late 50s, to a woman in her mid 30’s. I had sleepless nights thinking about how much “more experience” he has then she. I also will have to travel apps 30 miles in horrible BIG CITY rush hour traffic(1 to 2 hours) to see her and he was available at a satellite campus only 8 minutes from me.
Now after changing oncologist, and having just one official visit with her, I was given a referral by her to see a radiation oncologist. He actually took me through (on their computer) my Axumin pet scans and showed me(slice by slice through my entire torso) where the 3 metastasis are. Before this past Friday, I had been under the impression I had somewhere around 8 or 9.
He then proceeded to use terms like Oligomatastases, remission, and even, dare I repeat? “cure”. He even spoke of (in a couple of years) possibly being able to stop Lupron (castration) if this treatment gets my PSA down to undetectable as he feels it has a chance of doing.
He explained we would have to do a little more planning and tweaking, but he thinks that 25 sessions of radiation to the two lymph nodes(and the lymph nodes around them just for extra precaution) … and to the one bone spot (that he explained was very shallow (or superficial) on the edge of my left pelvic bone could be a curative approach.
I had asked my former Oncologist about “Oligomatastic” prostate cancer and Dr. Kwon’s approach (at the Mayo Clinic) and he just dismissed it and grunted. This is basically what I will be trying now…2 years later.
Although I know there are lots of things that might not work out…it was so amazing leaving the office this past Friday(two days ago now) that I was stunned. I had to ask my partner who was with me if I had actually heard the words….Oligomatastic? Remission? Cure? “Years from now?” He confirmed what I had heard.
I’m jumping for joy this morning…partly because I woke up to temperatures in the 50s in Ft. Lauderdale…(I love colder weather) and mostly because I feel like I have some actual “light at the end of my tunnel”. I’ve been almost speechless…I’ve tried to remain stoic and not to get excited….because I know that these are only words….but hearing them has made my already joy filled days even MORE joy filled.
The moral of the story is…if you have doubts about the doctor you are seeing you should (if possible) change and see another.
I debated posting/talking about this too much for fear I might jinx it…but then decided it also might help someone in some way. Even if it doesn’t really work for me….it’s a joy to have these simple words bouncing around In my head these past couple of days.
Prayers said, daily devotional (about love)read and incense burned….
Another day around The Temple of Joy.
gJohn. 02-02-2020 (seems like an auspicious day)
P.S. picture is this morning’s Joyful breakfast
Written by
greatjohn
To view profiles and participate in discussions please or .
I'm gonna guess eggs benedict with maybe some grits. As always thank you John for your positive readings. What a day that will be if after this rollercoaster of a battle they finally do find a cure for all of us.
it was just what I determined was needed....LOL...for a cool morning in Ft. Lauderdale. Cold cereal wasn't doing it. Toasted ciabatta roll topped with over medium eggs, no-nitrate ham and topped with cheddar cheese. Slow cooked grits on the side. I'm getting hungry again....ha ha ha.....
LOL...I don't think so. My old doctor just said NOTHING. He just read results in a way that made me feel like I had one foot in a deep grave and the other up on a pile of slippery banana peels that had been greased. He left me guessing, never gave eye contact and I felt like a number. My new oncologist is a delight....and each visit ends with a hug.
I don’t think it’s shopping around till one gets the answer one wants.
There is no one approach and my husband has received different suggestions from different doctors regarding treatment decisions and approaches. Qualified doctors.
Shop around. Read forums. Read research. Read opinions and experiences. Take in as much information as one can and choose a clinician who sees you as an individual, discusses options and unknowns and possibilities, just as you’ve done, Great John.
thanks...I spent much more time writing this than usual because I didn't want to upset anyone, or appear to be too overly optimistic...or to credit the wrong person or thing for my optimism. I just realized (like I already said) words really do matter. All the best to you!
Sounds like your original MO needs to improve on his bedside manner! (as, unfortunately, too many do) A MO who causes great stress by unnecessarily destroying a patient's hope (and consequently lessening your quality of life!) is NOT helpful! Stress feeds cancer! A fact!! A patient's attitude is SO important! Good for you to be open minded and take the great effort to find someone else who is encouraging and gives you hope!
You mentioned Dr. Kwon; have you ever seen him? Do you like his approach?
In case greatjohn does not reply, I do have consultations with Dr. Kwon.
He has a hard-hitting protocol that gives a lot of hope to a lot of people for a meaningful remission. He is criticized for not having the best "bedside manners" but he nevertheless has the ability to enthuse hope in a person. Not everyone agrees with his approach - even among his peers at Mayo.
I would rather work with someone who enthuses hope than greatjohn's earlier MO who made him "feel like I had one foot in a deep grave and the other up on a pile of slippery banana peels that had been greased. "
Hope is a powerful thing - especially when it is more than human optimism. It is said that the overwhelming numbers of those who survived the Holocaust camps of WWII never let go of the hope of surviving that horror.
I saw Eugene Kwon for 4 years. Great guy! Very smart man who thinks outside of the box. He takes standard of care and throws it out the window. And his C11 scab is excellent.
There"s nothing to not like about Dr. Kwon. I think he's funny as heck. I guess you could say his bedside manner wasn't great when he looked at my husbands scan and said with much excitement " Wow that is a HUGE, Blazing HOT tumor! You can't feel that?" Then I welled up with crocodile tears and he looked at me like he was so surprised "Are you OK?" But after taking it in, I felt better he was not intimidated by this blazing hot think on T6. He felt with such a big spot and a 1.3 PSA, he could cure my husband. I would not sleep at night if it wasn't for his out of the box approach or if I had to look at the beads of sweat forming on the forehead of the last guy knowing he was out of his league.
That relationship is so important, GreatJohn. We both know no treatments are sure, but how GREAT to go forward with people you trust! I am just so very pleased to read this!
does the MN in your name imply Minnesota?....my partner and I made it to the Minnesota state fair this past August....and were able, after a 3 day stay for me at the Mayo Clinic after the emergency room there at St. Mary's....to make it the fair the day after I was released
...I had never had Walleyed Pike. It was amazing...between that fish and the Mayo Clinic in Rochester...(oh, and a bakery restaurant just outside of Minneapolis)....it made the place look very inviting to live in! Especially during the summer months...LOL.
My wife & I grew up in MN and returned 16 years ago to be close to aging parents. That meant my CaP diagnosis of 14 years ago was handled by Mayo - as well as subsequent IMRT, ADT, & Sipuleucel-T. I then had a wonderful 62 months on an NIH clinical trial, but when progression finally occurred radiologically last summer I’ve been back @ Mayo ... not so very satisfied once experiencing the NIH’s care.
MN has good quality of life in many ways; I appreciate many things about living here again. But, one does have to be ready to deal with winter!
I think we should all strive to hear the truth with a minimum of preconceptions. This is easier said than done, I know. It needs to come from our own research and sometimes multiple opinions of professionals.
My friend who died too soon from prostate cancer fell victim to an alternatives-to-treatment shyster who specialized in "sounds good" non-treatments that are what many people want to hear.
His death caused a lot of anger among friends and family who disagreed with his approach. But right or wrong, only the patient can decide what, if any treatment they want to pursue. That is the exclusive right of the patient.
We all need to find the doctors and treatment plans that we agree with and are comfortable with. My hope is that we all can listen to different points of view and make well-informed decisions in the process. But in the end, the decisions are ours to make.
Some doctors are brilliant but have poor social skills. some docs have great bedside manner but aren't necessarily up on the state-of-the-art. I don't think there are any "shoulds."
I wanted to check out the disulfiram clinical trial at Duke...My Oncologist in Durham is a young Harvard trained doctor who travels frequently to symposiums(she is brilliant and helped me with the FAA to get my medical current) ....My MD Anderson oncologist (he is young also ) is a Duke graduate..Both enjoy the research end however have open minds...I like the competitive spirit.....My RC is from MIT (MD Anderson) and is off the charts...All that being said who knows when clinical trials come along where I might end up...I am concerned about people who's first comment is I like my doctor....My RC is polite but 99% business. I do have a local oncologist holy crappola ....very nice guy but cookbook oriented and he is smart enough to defer to my other two...he is helpful when I need something and not want to travel..(Lupron shot) I am not saying I have it figured out because in the end we cannot second guess our selves .... I think it is good to get some multiple opinions when things begin to change....Tall_Allen good stuff on all you provide Blue Skies....
I know they shut it down from a PA at Duke...My OC headed it up...I keep forgetting to ask but I have included it in my note...up until now I am not metastatic so I did not qualify when it was active...
What can you tell me about dichloroacetate ? I have a good friend who just got back from Palm Springs and played golf with a guy who states his brother had 3 months to live 4 years ago...DCA is what is keeping him alive. Non Hodgkins Lymphoma ...
This is a great post, thanks for sharing. I've never felt a strong need for a second opinion so far. My MO has been realistic but encouraging. We tend to bounce jokes off each other and laugh while discussing treatment. Up until a month ago I couldn't complain about the results, as they couldn't be better.
Seeking a second opinion or changing MOs isn't free. There's time and stress involved, and if there is a difference in opinion how do we choose?
I think you made this move at the perfect time. Your PSA has been stable but slowly increasing. You have a good reason and time to consider alternatives. My disease has always appeared suddenly, so I tend to take the first treatment option available, rather than delay treatment to seek other opinions.
However, I just found out that she retired the month I changed doctors. HMMMM.
2. I was able to "try out" my new doctor because she filled in for my old doctor for about 6 visits over the past year. She's with the same hospital, so the change was seamless. If I hadn't know about her from having her actually see me....I'd have never changed probably. I feel like the "stars just aligned".
3. I didn't pick her because she "said what I liked"...I picked her because I like "how she said what was actually going on". She was the reason for my post regarding "My Good News is that my Bad News could have been a lot worse".....LOL. That really sums it up.
4 . The "stress" will be driving into Miami to go to the Sylvester main Campus in Downtown Miami which is where she sees patients. I live in North Ft. Lauderdale. Traffic has gotten insane in Dade County. My old oncologist was about 8 minutes away just north of me.
Great news, greatjohn! Dr Kwon is one of the Drs we see and we have met many of his patients since starting this road. It’s astonishing to me (they have all been metastatic) how many of the guys are in long term remission. Off drugs completely type of remission.
It is possible for you too, based on The low tumor burden. Glad you found a different DR!!
Hi. Exactly, your new oncologist has a more current vision of how to treat our prostate cancer. I am 52 years old and I was detected with metastatic prostate cancer Gleason 7, PSA 65 with 50 years. The world fell to the ground. Consult a lot, advise me a lot, ask for many favors for advice and change the Oncologist. A light appeared. My oncologist explained to me that today prostate cancer is not MO, or M1. It has been shown in trials that the oligometastatic patient must be treated differently, and that there are options for significant improvements including remission, whereby the figure of the oligometastatic patient appears on the scene. They made me a radical treatment. The first, Hormone treatment (choose every 3 months), three months after chemotherapy with Docetaxel (6 cycles), one month later, IMRT radiotherapy 50.4Gy in 28 fractions of 1.8Gy on ganglionic areas, overdosing on the prostate with 24Gy in 6 fractions of 4Gy, and 3 fractions of 10Gy on the M1 bone metastasis (Ischion left). I finished all the treatment in September 2018 and the analytical and Pet-Hill result in complete biological remission. There are no remains of mestastasis and I have the PSA at 0.008. Only Eligard keeps me until three years old, that last week taking advantage of the quarterly review I asked him why three years, (also in response to a colleague who asked me here, because three years) and told me that accompanying and benefiting the effects that He is undergoing radiotherapy for the remaining two years. What will happen next? At the moment this complete remission is a great step. It's time.
With which, I think you can be happy about your oncologist, because it seems that the figure of the Oligometastatic patient and fractional radiotherapy is being given great importance and he is aware of it. It also seems that there is the "abscopal effect" (which is being studied extensively) that radiotherapy provides and that in oligometastatic patients it has good acceptance.
Meanwhile, trying to gain time for further research and can reach our bodies soon.
My good and positive love to you. Thanks for your thought and sharing. I may just get a second opinion too. It’s just that I am on government medical subsidy and my medical condition is handled by our National Cancer Centre ( Singapore) since I am a retired civil officer. So to seek second opinion, means going private and this means I will not be subsidized and have to pay in full for all treatments, consultations and medications. But I may just do a private consultation to see if my I oncologist and urologist are doing it right for me.
Thanks for the encouragement and again, my best to you.
Haniff
P.S. love the breakfast spread. Let’s catch up for some great food in Singapore if you swing by 😉 in the future
Hi greatjohn, Glad you shared your great news! I also have a female MO who’s about 30 yo. She calls her patients “her guys” and she knows her craft. So lucky to have found her.
My situation is somewhat similar. I go to prostate oncology Specialists and see Dr. Mark Scholz. He too believes that ogliometastic men can experience long term remissions and dare we say cures. I too had radiation on three mets about 3 years ago along with chemo, Lupron and Zytega for 21 months. I’ve been off everything (except simivastin and metformin) now for nine months. Since I still have 60% of what appears to be a healthy prostate, my psa went up to 2 and there was no way to know if that was related to my healthy prostate tissue or more cancer. So I did a psma scan last month to determine if it was related to my cancer. It came back all clear. So my vacation continues for now. I’m hoping for that long term remission or even cure. Hope is not a bad thing as long as you are doing everything you can to keep yourself healthy. By the way, my second opinion at UCLA agreed with the SBRT to the mets and the potential abscopal affect. And they rarely recommend anything out of the box of SOC.
This is a wonderful post to start my Monday morning! Thanks for sharing. Doesn’t it feel great to have a plan of attack? My prayers for you on your journey.
I really like this post. It somewhat parallels my experience with the exception that my team of doctors are all cautiously optimistic that that some PCa cases are curable. My experience has been that the docs out there on the cutting edge don’t know for sure because not enough time has past after the newest drugs/technology have been given to the patient(s).
For me, like your experience with your new team of docs, almost every discussion brings hope but with a full understanding of that the data is just not there to prove that a cure exists...yet.
For the most part, a positive approach to care is always good in my opinion, there has to be hope, and there will be a cure, maybe some of us are already cured and just don’t know it yet.
Great news Great John.....they change my MO and he kept me on zytiga whereas previous MO was going to try something else since PSA was going up a little ....it took 6 months but finally coming down....change sometimes is a good thing....all the best🙏
I am so glad for you! I have watched Kwon on YouTube--"spot welding". Your new prognosis and treatment seems quite "simple" compared to what your expectations had been. "Set in their ways". Another saying by "They" and "They" are almost always right!
As a two year plus vegan I am now able view the "food porn" pics you insensitively post without experiencing withdrawal symptoms such as excessive salivation--LOL!
Amen, my first urologist gave me no hope, told me to stop running, diet didn't matter and had a hard time looking me in the eye. I got a second opinion and was told the opposite. Also, the words "remission" and talks of "possible cure in years to come" gave me hope from my second opinion Dr. That's what we all want, HOPE. Not false hope, everyone's case is different. I have stage IV "incurable" prostate cancer but I'm still living. We need coaches in our corner that give us hope and the desire to fight, not ones who have us counting our days.
This is an awesome demonstration of the courage to ask questions and the courage to challenge authority and to reject being stuck. We all celebrate you.
Great news, the word" contained" and cured are so misleading when it comes to PC, all it takes is one microscopic cell to breach the gland and start it's travel to setup shop in another part of the body, ie: nodes and bone, there are currently many advanced treatments today that were not even available 5 yrs ago when I was diagnosed but still not curable..prolonging life for a stage 4 is about the best that can be had presently.We all hope to see Cure in the near future but not there yet...in my case, given 3-6 months to live 5 yrs ago, 4 yrs now in treatment with checkpoint inhibitors Blockade immunotheraphy and told I'm Complete Durable Clinical Remission NED currently...Cured?, Never!, I will be looking over my shoulder the remaining time I have, never let your guard down, live for every day you have and consider it a blessing..Great news, stay positive.
Your case is similar to mine, with the same words. After having chemiotherapy and put on ADT my cancer was under control until last june. PSA began to rise and an image showed that I have a spot in a lumbar verthebra. So Oligometastatic. The radio-oncologist said me that with 3 sessions of SBRT the PSA must decrease and very probably will be curative.
On agoust I finished my treatment, the PSA decreased and the new image was clean.
Next visit to my radio-oncologist and my oncologist will be on 17th this month.
Would be great that they could say me I am cured and the ADT is not necessary.
I have read that in some cases the SBRT wakes up the immonology system.
I was lucky to have this be my case after I received my diagnosis in July 2019. I read a book that mentioned Oligometastic PC before my last appt w urologist and first appt with med oncologist. I am getting a similar treatment but 44 treatments. Today will be 14. Hoping for same outcome and the words brought tears to my eyes when at my first appt the Dr used the word "curative" and yes just words. We will see. I will be on Lupron and Aberiterone until Oct 2021. Then they take me off and see what happens (is how my doctor explained it) I have suspected lymph node involvement but they couldn't find anything more on scans or an attempted biopsy which was cancelled after 20 minutes of trying to find a lymph node in the area they expected them to be. My high PSA has them all suspecting there's more cancer than they could see on scans. While still in the early stages and before any treatment my PSA dropped almost 35% on it's own. After starting Lupron my PSA it dropped over 95% after 1 month on Lupron and at last test was .5. Best wishes.
Excellent! I found similar, nodal oligametastatic and had SBRT / IMRT in November and waiting to see if my nadir goes to undetectable. Back-up plan if not is 177-Lu-PSMA. Feels like a gift of more life, does it not!?
My husband is treated by Dr. Kwon and he feels my husband can be cured using the Ogliometastic approach. Charlie had two lesions removed in July. Charlie's PSA went nearly undetectable. Now his PSA has creeped up a tad. We will do another scan and I would think it will be treated with SBRT. Mayo said there cold be a second round, but this time his PSA is far more stable than we have seen. I'm hoping the cocktail he's taking from "How to Starve Cancer" may work. Charlie is not on any meds other than the repurposed drugs.
We have a lot of issues in our area with doctors that think how we are being treated is terrible. The doctors we have seen are totally Standard of Care and don't want to try anything new. We interviewed a new Family Practitioner that was so put off by us, she called Dr. Kwon to tell him we were not following his directions. She saw a guy that had had a bone metastasis so the fact he was not on any meds blew her mind. She accused me of playing doctor and being an internet junky because I was educated about the disease and helping my husband. Dr. Kwon wasted us something like this could happen.
We interviewed a respected Oncologist in our area. She disagreed with the Ogliometastic approach. Said it was unproven and that my husband was stage 4 years ago and needed chemo. That was not true but she used fear to intimidate. That is not how we work. I also said we'd like to explore lutetium and could go abroad for treatment. She hated that. It made her crazy. She told me when LU 177 was approved in the US it would be for those that have exhausted chemo with a gleam in her eye she had defeated us of hope. Really twisted in my opinion.
I'm glad you found this perspective! My husband is doing great, with a very low disease burden, working feeling great and we have lots of tools in our tool box. If you have not watched Dr. Kwon speak about Ogliometastic approach, I'f suggest watching him on Tube.
It was ALMOST as good as this morning's breakfast of a slice of left over pizza...heated in the air fryer so it's better than the first day....with a small bowl of homemade coleslaw and a small bowl of mixed vegetables.
I'm feeling so much more optimistic it's changing how I feel every day! This was just the first step...but hoping that everything goes as planned and that the therapy with radiation can happen as he foresees ...and good results will follow!
Great John do know if UofM uses NETSPOT with the radiology? I hope to follow you. I’m in Tennessee now but could have a place in Miami to stay. Stay Strong
Congrats! I am going through something very similar right now…two positive lymph nodes (spotted in a gallium 68 scan) and I have surgery scheduled for March 12th. We’re going to take those out along with the surrounding lymph nodes and if everything goes perfectly I could potentially be cured. I know the odds are very slim but I am feeling positive! Do a search for the ‘Oriole’ study.
I like your new doctor and I believe in the possibilities your radiation oncologist mentioned! Most of all I believe that this positive environment will give you support not only from a therapy point but support you in your healing power!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Radiate just the prostate when there is extensive lymph node involvement?
