Burnett1948: I am thinking about having... - Advanced Prostate...

Advanced Prostate Cancer

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Burnett1948

Burnett1948 profile image
65 Replies

I am thinking about having my groin lymph node Stereo radiated. Tall_Allen has suggested previously that there is nobenefit in getting it radiated. My Oncologists have said not benefit. I have had it biopsied and it is cancerous. One of my oncologist said I could get odema or oedema. My purpose for writing is to

seewhat you think about getting it radiated. I have started hormones (3 shots) my PSA is down from 4.4 to .6 in a month and I have been told this lymph node will reduce in size. I think I have almost raked myself into not getting it radiated now. Your thoughts please.

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Burnett1948
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65 Replies
Tall_Allen profile image
Tall_Allen

Will you keep asking people until you find one who tells you it's beneficial? The reason your doctors (and I) say no, is not just safety (although there certainly is that) but the groin lymph nodes are outside of the prostate drainage area. So the cancer in those lymph nodes had to get there through the blood. The cancer is therefore widespread and zapping it accomplishes nothing. Systemic therapy is what you need for your systemic disease.

Burnett1948 profile image
Burnett1948 in reply toTall_Allen

Thanks Tall_Allen. I understand now. I needed that.

azulmsalas profile image
azulmsalas in reply toBurnett1948

Tall_Allen, I ask you a question because my English is bad and the translator is sometimes not exact. What you say is that the glands in the groin do not always deflate even though the prostate does? My dad's prostate has shrunk a lot but his leg is still almost as swollen.

Tall_Allen profile image
Tall_Allen in reply toazulmsalas

No, I did not say that, but that can happen.

Stevecavill profile image
Stevecavill in reply toTall_Allen

There’s heaps of studies investigating if SBRT to mets is beneficial. I was on one. Why would you say it achieves nothing? The data is not in on that question yet.

Tall_Allen profile image
Tall_Allen in reply toStevecavill

There is no data proving it delays progression or improves survival. There have been only 3 small Phase 2 studies (ORIOLE, STOMP and SABR-COMET2 (below) with inconclusive results. Even the authors of those studies agree with me, but they (and I) are hopeful that some benefit can be proved.

prostatecancer.news/2019/09...

prostatecancer.news/2017/12...

prostatecancer.news/2019/04...

Stevecavill profile image
Stevecavill in reply toTall_Allen

Well, the first link says the results looked good “Stereotactic Ablative Body Radiation (SABR, or sometimes, SBRT) significantly slowed metastatic progression in men with 3 or fewer metastases (oligometastatic).“

I agree the data are inconclusive, because there isn’t much data. But not knowing if it helps is completely different to saying it doesn’t help.

You can’t jump from inclinclusive data to “The cancer is therefore widespread and zapping it accomplishes nothing.”.

The correct statement is, we don’t know if it will help.

Stevecavill profile image
Stevecavill in reply toStevecavill

And there’s a LOT more than three studies (not necessarily clinical trials.). Here’s the one I was involved in. And you can see by all the citations and similar articles there have been literally dozens of studies. pubmed.ncbi.nlm.nih.gov/311...

Tall_Allen profile image
Tall_Allen in reply toStevecavill

You misunderstood what I wrote and took it out of context. I said that once there are metastases, it is systemic and requires systemic treatment. Zapping a few metastases will accomplish nothing without systemic treatment. How can it?

You also misunderstood my comments about ORIOLE. The article explains that "6-month progression" was only slowed because it was entirely PSA progression. For more explanation of why treating PSA misleads one into thinking anything is accomplished read:

prostatecancer.news/2020/07...

Stevecavill profile image
Stevecavill in reply toTall_Allen

I didn’t think the OP was suggesting he stop ADT. Totally agree that would be dumb.

Stevecavill profile image
Stevecavill in reply toTall_Allen

Here’s an Australian study from 2018. Unfortunately I no longer have my institutional access login, so I can’t read the detailed paper.

petermac.org/news/sabr-feas...

Tall_Allen profile image
Tall_Allen in reply toStevecavill

That's a good example of the kind of misinformation out there. Now I hope you understand why that press releease is wrong. How could they possibly know what would have happened without a randomized trial?

Stevecavill profile image
Stevecavill in reply toTall_Allen

By comparing the results to the other thousands of men they treat With ADT maybe ? It’s really a bit hard to say without reading the paper. The trial follow up was 5 years, I assume they have later data now as well. 5 years with no progression for oligometastatic disease and no ADT is a fairly promising result.

I hoped you might be able to access the paper.

Tall_Allen profile image
Tall_Allen in reply toStevecavill

That comparison would have been a good thing to do, but unfortunately, they did not do that. They have only 2-year data as of 2018 when it was published. The authors write, "Limitations include small sample size, limited duration of follow-up, and lack of a control arm." Here's their published study:

europeanurology.com/article...

Of course, SBRT eliminiated local progression - doctors have been palliatively zapping bone metastases to do that since the early 20th Century. But answering the question of whether there is any oncological benefit (i.e., slows distant progression, reduces prostate cancer mortality or overall mortality) will take randomized clinical trials where it will have to prove itself better than the standard of care (systemic treatment). There is a list of them at the end of the following article. Some will have results in 2022, but we will have to wait until 2024/5 for 5+ years of follow up.

prostatecancer.news/2020/07...

ron_bucher profile image
ron_bucher in reply toTall_Allen

As an engineer, I certainly believe in science and the value of studies for public health knowledge. But given that every cancer case is unique, and treating cancer is a yet to be completed science, I see studies as only one input into complicated decisions on individual advanced cancer treatment plans.

ron_bucher profile image
ron_bucher in reply toTall_Allen

“Zapping it accomplishes nothing” - pretty strong (and potentially harmful) statement about an individual patient case unless you are that patient’s oncologist.

Tall_Allen profile image
Tall_Allen in reply toron_bucher

Again, you are taking statements out of context. What I wrote was that zapping a few metastases will accomplish nothing without systemic treatment. How can it?

ron_bucher profile image
ron_bucher in reply toTall_Allen

Thank you for correcting how you phrased it. Punctuation matters. Big difference between either/or and both.

StayingOptimistic profile image
StayingOptimistic in reply toTall_Allen

Thanks ,TA. I guess I am in the same situation as Brunett1948. I will certainly make a note of this discussion when I see MO at end of month.

GP24 profile image
GP24

Burnett, there are no studies which show an overall survial for removing mets. No phase III trial has started yet and if a study starts, you will have to wait for well over ten years to get results regarding overall survival.

I get my mets radiated with SBRT in the hope it will be beneficial and because I do not like to watch cancer grow in my body. Your PSA value will go down after the radiation and you could make a long break with your current ADT. Get one last shot after the radiation though and then start to observe.

Burnett1948 profile image
Burnett1948 in reply toGP24

I appreciate your advice. This is very topical.

timotur profile image
timotur

You may look at this study on oligometastic disease (OMD), and discuss with your doctor and possibly look at trials...

sciencedirect.com/science/a...

Although randomised phase III evidence is lacking, recent randomised phase II trials have shown the potential of SBRT to improve survival of patients with OMD [9], [10], [12] and multiple randomized trials are expected in the next few years. A recent review reports 64 ongoing trials studying ablation of OMD, activated and accruing through February 2019 [102]. Over half were phase II (n = 35), however, 17 randomized controlled trials were noted. All are encouraged to build on these promising data by continuing to enrol in ongoing randomized trials.conclusion is, it's beneficial if there is curative intent and the met is safely treatable, otherwise it's better to treat systematically.

In conclusion, considerably more data are needed to define the optimal patient selection for SBRT or otherwise curative intent MDRT for OMD. Synchronous and metachronous OMD are currently best defined as distinct disease states. Others such as oligorecurrence, -progression and -persistence are plausible scenarios where clinically evident disease may represent the true disease state as opposed to impending wide spread disease. Based on ongoing trials it is clear that further complexity will be added regarding the use of concurrent systemic therapy or immunotherapy [102]. It is therefore critical that authors and editors are explicit about inclusion criteria and definitions, endpoints and toxicity, while continuing to generate evidence on this complex and evolving clinical indication. Additional data are needed to determine the value of MDRT for selected cohorts of patients identified by key clinical features and/or extent and timing of OMD. Clinical judgement and individual patient factors remain key features of defining OMD. Future prospective studies should consider stratifying patients into different categories, e.g., such as will be performed in the context of the OligoCare trial. Meanwhile, based on the available evidence, indications for curative intent radiotherapy of OMD can be defined as 1 to 5 metastatic lesions, with a controlled primary tumor being optional, but where all metastatic sites must be safely treatable.

Burnett1948 profile image
Burnett1948 in reply totimotur

Much appreciated. It’s a great group to be part of.

tango65 profile image
tango65

This is a link to a randomized clinical trial phase II, the Oriole trial. They found a benefit in progression free survival and an induced systemic immune response. There are not phase III trial results about treatment of oligometastatic PC, and we do not know if direct treatment offer a survival benefit.

sci-hub.st/https://jamanetw...

treedown profile image
treedown in reply totango65

Count me a guinea pig for this treatment.

tango65 profile image
tango65 in reply totreedown

I am planning to do the same. It is done in many other tumors all over the world. I consulted in the Sloan Kettering cancer center and they told me to do it.

Burnett1948 profile image
Burnett1948 in reply totango65

Thanks: for me it’s about understanding.

Burnett1948 profile image
Burnett1948 in reply totango65

Thank you.

I would like to apologize for Tall_Allen's rudeness. His statement " Will you keep asking people until you find one who tells you it's beneficial?" was uncalled for and does nothing for your care. Those type of derogatory statements are not what this group is about. We are all equal here and no one individual is holier-than-thou. Good luck.

tango65 profile image
tango65 in reply to

I agree.

Burnett1948 profile image
Burnett1948 in reply to

Appreciated. However his advice was the same as I was getting from my Oncologists.

GP24 profile image
GP24 in reply toBurnett1948

An oncologist will usually plan to treat you with the drugs he has available and not with radiation. If you want advice if radiation helps, you should see an RO.

Stevecavill profile image
Stevecavill in reply toGP24

Exactly correct

Danielgreer profile image
Danielgreer

I have bone mets and asked my MO about radiation. She said that I should only have radiation if a particular tumor is causing pain.

GrizzlyMama profile image
GrizzlyMama in reply toDanielgreer

It helped my husband. See previous reply.

Burnett1948 profile image
Burnett1948 in reply toGrizzlyMama

Thank you.

Burnett1948 profile image
Burnett1948 in reply toDanielgreer

Thanks; I have been told about the pain help by radiation by a relative who had to have it.

GrizzlyMama profile image
GrizzlyMama

My husband had extreme edema after having radiation on his right pelvis/hip. After radiation, the pain in his hip lessened. The edema, however, continued until he started taking Prednisone. Lymphedema massage also helped with the edema.

Burnett1948 profile image
Burnett1948 in reply toGrizzlyMama

Much appreciated. I’m not now going ahead with the Radiation after your information.

treedown profile image
treedown in reply toBurnett1948

I had 44 treatments 80gy ending 3/16. My lower left leg swells everyday during work. I work it out with exercise, usually takes about an hour of cycling, running or walking to get rid of it. No pain, no other issues yet. My radiation was done with curative intent.

Burnett1948 profile image
Burnett1948 in reply toGrizzlyMama

Much appreciated. I had no idea of deems.

Burnett1948 profile image
Burnett1948 in reply toBurnett1948

edema

EdBar profile image
EdBar

I was stage 4 Six and a half years ago at dx, mets to lymph nodes and throughout my skeleton, my RO suggested that radiating my prostate and lymph nodes may have a beneficial effect when combined with ADT, and also be palliative and stop the spread of cancer to my bladder and nearby hard to treat organs.

About half of the docs I consulted said it was risky, others said it seemed to make sense. After reading Snuffy Myers book that covered where and how mets are formed and spread it made sense to go forward and “debulk” my cancerous prostate and nodes. And so that’s what I did, a very skillful and careful RO radiated my prostate and several nodes after I’d been on ADT for about 4-5 months. Overall SE’s were mild, and I don’t appear to have any significant lasting effects.

When I’d later became a patient of Snuffy Myers he made the comment that radiating my prostate was the single best thing I could have done. I went on to have chemo per CHAARTED and continue on ADT and my PSA has remained undetectable for about six years now.

Do your research, consult with doctors (there aren’t any to my knowledge who post on this site) including an RO and see if it’s right for you. For me I’d do it again in a heartbeat, good luck.

Ed

Burnett, I am not a doctor nor a trade technical writer. I do not know much about the latest treatments. However, as a person who at age 56 (in 2004) had the about the same PSA and Gleason as you - 6.8 and Gleason 7(4+3), looking at your numbers you had about a 92% shot at initial cure. But, unseen cancer cells had already escaped your prostate into your lymphatic and vascular systems. That is called micro-metastates. Cancers cells floating around until they land and grow into a metastatic lesion. Doubt me, discuss micro-metastasis with your Oncologist.

This calls for systemic treatment. Unless there is a new silver bullet that has been developed, chemotherapy is the answer. Listen to your medical oncologist, he is the pro. Hopefully he specializes in Genitourinary Cancer and not any other type. Your primary care physician and your urologist are really not equipped, through skill, knowledge, and practice, to render an up to date opinion. Seek one pro and listen.

At the time I went metastatic, the numbers showed that I had 3-4, maybe 5 years to live. That was 16 years ago. On discovery of a met, I immediately underwent chemotherapy (6 month) and hormone therapy (6 years). Today I am most fortunate as without medication I am still undetectable.... >0.1 PSA and all mets were resolved the first year of treatment. I know that I am the exception, however, I did attack this bastard immediately after primary treatment failed.

I do not mean to belittle or embarrass you, however, your oncologist and Tall Allen have give you wise comments. It is time to accept that you are metastatic and start killing the little bastards. Good luck.

Cheers,

Gourd Dancer

Burnett1948 profile image
Burnett1948 in reply to

gourd_dancer. You have got me thinking about combining hormones with chemo. Has anybody else had experience combining these two treatments?

in reply toBurnett1948

Oh yes. Plenty here. Tall Allen has links to studies. I don’t. I was in trial back in 2004. Or simply search chemotherapy with hormone therapy. I would think that your oncologist is also versed in the studies, Good luck.

Cheers

ron_bucher profile image
ron_bucher in reply toBurnett1948

I combined both with radiation and it’s been successful for 3.5 years and counting. My best decision was consulting with a world class expert on prostate cancer, Mark Scholz.

ron_bucher profile image
ron_bucher in reply to

My case and my philosophy are very similar to gourd dancer. My cancer has been a bit more challenging, but has been in remission again for 3 years and counting. Details are in my profile. Silver bullets usually do not exist for advanced cancer, so I consider all treatment options each time the beast reappears.

in reply toron_bucher

Ron, I did not receive the normal standard of care. It was referred to as ultra standard of care by a world class researcher. Therefore he had greater flexibility in treatment. I was one of the nine. I jumped on it very early after DX with mets. It worked for me, however, it did not work for everyone. It is believed that the very early treatment was the game changer, adhere us the last update that I have. A search on chemotherapy with hormones trial will get you more. Additionally I took 30 mg of Prednisone a day for six months and high doses of Vitamin C

A phase II trial of androgen deprivation therapy (ADT) plus chemotherapy as initial treatment for local failures or advanced prostate cancer

Robert Amato, Mika Stepankiw, Patricia Gonzales

Published in Cancer Chemotherapy and… 2013

Medicine

Purpose: Long-term hormonal ablation in prostate cancer is associated with decreased overall health and quality of life. Few reports emphasized the role of chemotherapy in the management of early stage prostate cancer. This study analyzed the safety and efficacy of androgen deprivation therapy (ADT) plus chemotherapy as initial treatment for patients identified as local failures or not eligible for prostatectomy or radiation therapy due to advanced disease presentation.

Methods: Enrolled patients received ADT in the form of leuprolide every 12 weeks for 24 months with bicalutamide initiating after the completion of chemotherapy. Chemotherapy consisted of ketoconazole and doxorubicin for weeks 1, 3, and 5 and estramustine and docetaxel and for weeks 2, 4 and 6. During weeks 7 and 8, no treatment was received.

Results: Forty-six patients were enrolled, and forty-five patients were evaluable. Median progression-free survival (PFS) was 23.4 months. Median overall survival (OS) was 53.7 months. Out of 45 patients with measurable disease, 22 patients had an objective response: 9 patients achieved a complete response; 2 patients achieved a partial response; 10 patients achieved stable disease. Frequent grade 3 adverse events included elevated ALT (17 %), hypokalemia (13 %), and hypophosphatemia (13 %). Grade 4 adverse events were rare and included low bicarbonate (2 %), hypokalemia (2 %), leukocytopenia (2 %), and neutropenia (2 %).

Conclusions: The treatment demonstrated clinical benefit in all patient subsets with minimal reversible treatment-related adverse events. Subgroup analysis suggests that having prior local therapy resulted in greater PFS and OS. LESS

j-o-h-n profile image
j-o-h-n

I don't think you should Burn - ett.......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/02/2020 6:41 PM DST

Burnett1948 profile image
Burnett1948

My Medical Oncologist told me that chemotherapy when I am still hormone sensitive would be very beneficial. What do you think?

ron_bucher profile image
ron_bucher in reply toBurnett1948

When my post-RP PSA started rising, Mark Scholz told me Taxotere would kill my tiny tumors, and radiation would kill tumors that were too large for Taxotere to kill. We implemented that plan 3.5 years ago, and my PSA is still undetectable. Only had 9 months of ADT with that treatment plan.

dadzone43 profile image
dadzone43

I recommend you do some research about lymphedema of the leg before you do this. Easy to Google. My friend swings 20 extra pounds of water in her left leg because of surgical damage to her groin nodes. Radiation damage will do the same thing. If the radiologist-- the specialist who does this -- says No, why are you pursuing this course?

Burnett1948 profile image
Burnett1948 in reply todadzone43

dadzone43 I’m not going ahead with Radiation. You have all mostly explained why I shouldn’t. I understand the reason. I am now going to investigate combining early kemo with hormones. Thanks.

dadzone43 profile image
dadzone43 in reply toBurnett1948

Burnett1948 this is the power of the forum: to broaden our perspective for better decision-making. All good thoughts are sent your way!

StayingOptimistic profile image
StayingOptimistic in reply toBurnett1948

I am in the same boat as you. Please let me know what your treatment will be. Thanks

Burnett1948 profile image
Burnett1948 in reply toStayingOptimistic

If you follow me I should remember.

ron_bucher profile image
ron_bucher

Have your doctors discussed combining radiation and Taxotere? Every case is unique, but that combination plus 9 months of ADT 3+ years ago gave me undetectable PSA so far.

Burnett1948 profile image
Burnett1948 in reply toron_bucher

Thanks ron_bucher. How did you suffer chemo?

ron_bucher profile image
ron_bucher in reply toBurnett1948

I breezed through Taxotere smoothly.

Burnett1948 profile image
Burnett1948 in reply toron_bucher

I have been convinced that Radiation is not for me now. I have had two lots of radiation previously.

Burnett1948 profile image
Burnett1948

Great. I’m a bit older. I hope that doesn’t make a difference. But I keep myself fit. Thanks.

Stevecavill profile image
Stevecavill

I came across this video recently and thought of your question.

Steve

Stevecavill profile image
Stevecavill in reply toStevecavill

urotoday.com/video-lectures...

Burnett1948 profile image
Burnett1948 in reply toStevecavill

Thanks Steve.

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