On the day (last Monday ) before I was scheduled to be irradiated, I read about the side effects of the EBRT and Radium 223. One of the side effects that made me cancel the appointment is “blood cancer”. I don’t think I will want Radium 223 either. They have scared me. Your thoughts on the above is appreciated. Thanks. Do you think I ought to go ahead with the treatment or do you think otherwise?
At the crossroad of being irradiated ... - Advanced Prostate...
At the crossroad of being irradiated or not. Please help me to decide. Thanks.
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tarzantass
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If you want to fight cancer you have to accept the risk of side effects from the therapies. So no treatment is not an option. If there are alternative therapies available you can choose the one with the lowest risk of side effects.
You cannot wash your hands without making them wet.
Thanks GP24
What % get that side effect?
I wish I could. Please let me know the probability of getting blood cancer or bladder cancer by the percentage. Thanks.
On the order of one in a thousand for bladder cancer, even less for blood cancer.
That’s very encouraging. Which one should I go first — EBRT or Radium 223? Two areas that need to be irradiated are prostate and my right pelvic area. Which is best for the two areas — IMRT, SBRT, or others? I’m oligo mCRPC. Thanks Tall Allen
If you are oligo with the known disease limited to your pelvic area and you haven't yet had external radiation to your pelvis, why would Radium 223 therapy even be a consideration at this point?
Thanks Retireddoc. Besides pelvis, is it best to also get prostate irradiated by EBRT? Which EBRT (IMRT, SBRT, or other) is best for mCRPC guy like me? You feedback is appreciated.
If you are going to a well qualified RO, at a well equipped Center of Excellence, you don't need to worry about these decisions. This is the expertise of the RO caring for you. They will do what is best for you.
Again, if you are seeing a team of highly qualified physicians (RO/MO/Urologists) who specialize in Genitourinary cancer, they know much more about the natural history of prostate cancer (how it evolves and progresses) and the current treatment regimens than anyone on this forum. Plus, they are privy to all of your medical information (including past medical history, labs, physical exam info etc). It is foolish for anyone to take advice regarding actual treatment from laypeople on a blog/forum.
Even though I practiced medicine for 40+ years, I would never suggest specific treatment regimens to anyone on this forum, other than to say become educated and find the best treatment team you can and follow their advice.
The danger in laypeople making definitive statements regarding treatment decisions is that some individuals may disregard the suggestions of their own physicians at their risk. It is great that people share their won experience and treatments with others,They just don't know what is best for you. It is true that not all oncologists are up to date in treatment of prostate cancer. But if you seek consultation at a Center of Excellence where the physicians sub specialize, the chances are they are well informed and certainly know more about treatment of prostate cancer than anyone on this blog, myself included, of course.
What matters most is not the technology but the radio oncologist skills. Look into a few to see what their track record is. There are sites for this such as ratemds.com
I know there won’t be a total cure after radiation therapy. My question is the monster will return or sooner or later after EBRT or Radium 223, right? So, it’s not worthwhile to get those side effects that could be permanent. If I chose to be irradiated, what would be the suitable EBRT (SBRT, IMRT or other) for my right pelvic area and prostate (is it wise to radiate the prostate as the side effects are unbearable? And which one to have first — EBRT or Radium 223? Your feedback is very much appreciated.
I would do Radium first, but it probably doesn't matter.Let your RO decide how intense to be.
Thank Tall Allen.
I know there won’t be a total cure after radiation therapy. My question is the monster will return or sooner or later after EBRT or Radium 223, right? So, it’s not worthwhile to get those side effects that could be permanent. If I chose to be irradiated, what would be the suitable EBRT (SBRT, IMRT or other) for my right pelvic area and prostate (is it wise to radiate the prostate as the side effects are unbearable? And which one to have first — EBRT or Radium 223? Your feedback is very much appreciated.
So the way I see percentages of risks - 0% or 100%. As mentioned by GP24, seems unlikely doing nothing has 0% risk. Going on ten years since my RP. Despite all the fear mongering within HU, let alone everywhere, no incontinence for me. I did a true deep dive into my personal risk factors and I went into surgery knowing I would be fine. My deep dive included mpMRI imaging indicated no cancer in critical bits. I was marathon fit and could hold my urine under great stress - I did not need kegel catch-ups. My health was otherwise most excellent. My point - look beyond the stats and evaluate your personal risk for blood cancer.
I am doing this again now as I have started doublet immunotherapy for metastatic melanoma. Lots of stats and fears, including teeth rotting. So I went to appropriate dentist-I concluded my risk is zero. To combat fatigue I am training hard, including 3X week with a trainer, 90 minute sessions. My point here - I believe we can determine our risk levels and for some we can execute preemptive measures. Hope this helps. All the best!
Hi NanoMRI! Yeah just dive into getting irradiated hoping nothing will happen. Definitely there are side effects but there’s one side effect I’m scared to have is blood disorder (could be blood cancer). Have you gone through any radiotherapy?
Yes I had salvage RT. My share is not to dive into radiation. Delve into why a very very few get blood cancer from radiation to see if you may be at risk.
Before my salvage extended pelvic lymph node surgery I heard/read much fear mongering about lymphedema. So I delved into why this happens. I was ultra fit, trim, very active, no co-issues, excellent blood work. Even had leg compression blood flow testing. Conclusion - I faced no risk for (serious) lymphedema. Approaching seven years and no issues.
Did you explore Keytruda as immunotherapy for your metastatic melanoma?
Good Luck, Good Health and Good Humor.
j-o-h-n
Still exploring Keytruda, other/additional treatment methods and have upcoming consultations with additional doctors. I have started Opdivo and Yervoy, based on number factors, primary being urgency.
It seems we men 'have time' with metastatic prostate cancer but this is not the case with metastatic melanoma.
Thank NanoMRI. May I know which RT equipment you got treated by? And which (IMRT, SBRT, or other) is best for prostate and pelvis?
Eight years ago my salvage RT was 39 sessions IMRT, 70.2 Gy. The various replies to your post demonstrate there is no singular answer - no one knows for sure. "SoC" is a very broad spectrum of care. I do not offer recommendations or profess what is 'best'. I share my experiences and lessons. I did have various consultations on different methods. In the end I chose the doc I wanted to work with- and he recommended my treatment strategy. Was it the best? No way to no. Was the doc I chose recommendations based on what he offered, his contracts, volume requirements? Perhaps - and one reason I am always cautious about what is behind specific recommendations.
I know there won’t be a total cure after radiation therapy. My question is the monster will return or sooner or later after EBRT or Radium 223, right? So, it’s not worthwhile to get those side effects that could be permanent. If I chose to be irradiated, what would be the suitable EBRT (SBRT, IMRT or other) for my right pelvic area and prostate (is it wise to radiate the prostate as the side effects are unbearable? And which one to have first — EBRT or Radium 223? Your feedback is very much appreciated.
As a fellow warrior says, we have to choose our poisons. Again, as seen in replies, opinions vary - and it seems so does the intent. Like a few others I will not offer layperson recommendations. I limit myself to my experiences and lessons.
I have not had to consider Radium 223 as I am not (yet) facing metastatic castration resistant prostate cancer (my understanding of is usage). I wish to note, I am not (yet) on ADT.
I saw and see RT as a tumor burden lowering treatment. I had my IMRT with full intent to kill all the remaining prostate cancer that had gotten out of the gland - we were hoping/gambling it was confined to the prostate bed. A few months after the IMRT we accepted my remaining cancer and not been confined to the prostate bed.
I then considered whole pelvic region (minus prostate bed) RT but declined this for the risks of side effects, the risk not all the cancer was within the treatment field, and I wanted to limited the total amount of RT I exposed my body to in case I needed it again in the future. For me, the salvage ePLND gave us a better understanding of the remaining cancer and a very fast means to test how effective it was; this means being uPSA testing (another topic that has wide range of opinions).
tarzantass I hope this helps. Always happy to share my experiences and lessons. All the best! Keith
Weigh your options.
Those adverse side effects you mentioned (as Tall Allen pointed out) are rare. Weigh that against the near-certainty that without treatment your cancer has a pretty high potential for getting worse. With treatment, what is the probability of driving your cancer into remission? NCCN and MSK have statistics represented in nomographs you (or your oncologist) can access. Then there is the higher potential for mild side effects that may or may not be transient, long-term or permanent...but still preferable to letting your cancer go untreated.
If you are analytical, draw up a "truth table" or matrix with high probability, low consequence at one corner and low probability, high consequence at the other corner. Such an exercise may help you decide on your course of action.
Advocating for oneself is hard work, starting with educating yourself on the options and consquences...but worth it, in my opinion. If you are not up to that task, it is understandable Physicians spend decades gaining the expertise and judgement needed to make these decisions, so there is no shame in turning yourself over to the judgements of the experts. That is what they are there to provide. Use them. Or take the middle road and simply make yourself an integrated part of your medical care team, demand your physicians' judgement and advice to make as fully informed a decision you can. You do not drive them and they do not drive you. But the cancer is a truckload of explosives and there are no brakes, so you DO HAVE TO STEER SOMEWHERE.
Thanks Lost Sheep
Radiation is the gift that keeps on giving. Side effects are usually three to five years out before they start to appear. Side effects are rare……….until you’re the one dealing with them.
Thanks KingNeptune. May I know which RT equipment you got treated by?
I had EBRT, I do not know the make, model or year of the equipment.
I’m FAR more concerned with FAR highly likelier side effects from ADT than RT - I start 7 weeks Nov 6. Odds are so slim for your worry.
That’s very encouraging. Thanks DannyMan. By the way, may I know which RT equipment you got treated by?
"You can't wash your hands without getting them wet"
Love it!
But it made my brain go into high gear and ask, can we?
Why when you look at it on the surface, if what the intent or desired results of the "wash" is and why we are doing it. You discover that indeed there are "alternative" methods available to accomplish the same effect. Assumption is here, the wash, and kill germs, for health.
If course we can look at the simple soap, hot water wash as SOC, the simplest and most effective methodology available to accomplish the task. As well as probably being the cheapest. But we could use alternative methods, heat and or cold do the same thing, even absent any need for required chemicals as an example. The use of chemicals could also offer alternative methods absent getting wet, so to say, lol.
Hahahaha, just wanted to let you all know what a simple statement can do to a mind! How it clicks and makes all those funny little gears crank and turn! Sometimes off to meaningless paths of Discovery, and yet, also at times, onto a untraveled path of enlightenment! Not specific to this subject, ie, cancer, but in all things!
To the OP...
What is the option? Treat or don't treat? Known results for non treating are evident. Treating carried with it some known, and unknown results. QOL, Side Effects, etc.? And why? Because we ARE all individuals, and there's not a soul alive that can tell you EXACTLY how you, your body will respond. But if you do your research, there are some things that can be done that lend towards mitigating some side effects from various therapies. I won't name them here, just know that for some, they have worked. Or was it those patients would have suffered the lesser anyways absent those mitigating efforts? Arrrrgh! The conundrum!!! The uncertainty we all face... Again, at the same time fighting the certainty of having cancer and letting it do it's thing unabated!
I'll be a broken record here and say... Because it's truth. That if you're not at a Major Cancer Center and one rated in excellence, then get to one! That is the single easiest step anyone can take to help mitigate any negative or undesirable issues. It's your body, your life, why chump it? Why not give it and yourself the very BEST of the BEST! No offense to local facilities, but they cannot compete!
That's my story, and I'll stick with it! But the options, the decision to make is more complicated than just yes/no, but also, what, where and by whom?
These answers will somewhat impact the overall result of your care.
Best Regards!
Thanks Coolone
28 IMRT sessions of pelvis after chemo. NED for 3 years. A decent trade so far I feel.
Thanks Vangogh. What is NED please?
No evidence of disease.
I had EBRT, 25 sessions, and HDR Brachy, two seasons, and no other cancers. That was9 years ago.Like others have states; every treatment has negative side effects.
Treatments help: no treatment doesn't!!
Thanks Teacherdude. May I know which EBRT equipment you got treated with?
As I recall from almost 9 years ago it was Image Guided RT. The machine first did a 3D scan then adjusted to radiate the known tumors in the prostate.Scan took about 4 min and the treatment about 10. Total time 15 min.
Contact me any time if you like.
Best wishes!
I had 44 treatments. 1 a day over 9 weeks. That was over 2 years ago. I’ve had no lasting side affects. Yet!
My treatment was 25 sessions over five weeks followed by two sessions of High Dose radiation Brachytherapy, boost. All this in early 2016.I have had one relapse after stopping Lupron for a year then was on monthly Lupron, my choice, and Nubeqa until Dec 2023.
Recently my PSA went from 9.24 to 1.07 in three months and I see my MO Monday next week anticipating a return to Lupron and Nubeqa but MO might have other suggestions
Along the way my only issue has been low energy. But at 76 kinda expected.
Best Wishes
I had radiation to prostate and 3 bone mets. in 2023.
Radiation did exacrcebate a pre-existing blood issue (lowered my HGb) but its manageable. If you are susceptible to blood issues, you may consider surgery plus radiate your bone mets. Otherwise Radiation would seem a good alternative.
Finding a good medical center rated as circle of Excellence is a big plus
Thanks hopefull
I love the "Getting Your Hands Wet" comment and completely agree. Blood cancer is a rare result. You already have prostate cancer, and it will continue to grow if you do nothing. I would choose the EBRT. It was but a small bump in the road for me.
Thanks Shorter.
I know there won’t be a total cure after radiation therapy. My question is the monster will return or sooner or later after EBRT or Radium 223, right? So, it’s not worthwhile to get those side effects that could be permanent. If I chose to be irradiated, what would be the suitable EBRT (SBRT, IMRT or other) for my right pelvic area and prostate (is it wise to radiate the prostate as the side effects are unbearable? And which one to have first — EBRT or Radium 223? Your feedback is very much appreciated.
I believe there is a good chance to stop the cancer if you radiate the prostate and pelvic area when the cancer is in the early stages. It comes down to whether it has already spread system wide. I had surgery first and it came back in less than 2 years. Next, I had EBRT of the prostate bed plus the pelvic area. 3 years later it came back and required SBRT for lymph node metastases. One year later I had SBRT for a bone met in my lower back and it is now in lymph nodes near my neck. We are all different. If you haven't had any treatments yet, my thoughts would lean toward EBRT. I have never had Radium 223, so it would be better if you ask someone like Tall Allen a question like that. He has a lot more knowledge about various treatments than I do. In fact, many others on this forum do. There are NO treatments that have NO side effects.
As KingNeptune said, radiation is the gift that keeps on giving. It's probably closer to the truth to say that everyone getting radiation eventually gets side effects, but few of the adverse outcomes are as bad as blood cancer. That doesn't mean the other side effects are negligible; many are life changing. Radiation cystitis, strictures in urethra or ureters, its quite a long list.
Saying "No" to any particular treatment is always an option. It is your body, your life, your choice. There are always multiple options, and anyone who tells you otherwise should be treated with suspicion.
These are hard choices, and sometimes the options are not good ones, but you owe it to yourself to be comfortable with whatever you decide to do.
Good luck!
Thanks FCoffey
Husband had the radiation and worked all the way through it. The best way to avoid side effects is to get the most experienced radiation oncologist possible. His was very precise and checked before every session. He had also gotten the Space Oar to help protect healthy tissue near by like the bladder and rectum. Never had an issue with either. It did seem to make him more fatigued and he took daily naps but exercise helped him a lot too. FInd a center of excellence for treating cancer. near you. He goes to Johns Hopkins.
Thanks Enshope.
I just returned home from radiation therapy. This is my third rodeo with it. My first series was in 2010 with 36 treatments, my second was to zap a few lymph nodes in 2022 with 5 treatments, and this time around they're going after a few more lymph nodes that showed up (dimly) on a PSMA scan I had a few months ago with 5 more treatments.
When I first learned I would need radiation 14 years ago I decided to research what was the latest and greatest radiation technology available at the time and came up with the Varian RapidArc. Only one cancer center in my metro area had it available. Fortunately it was directly on my path to work, so I arranged appointments on my way home each day.
Now I live in a different area and when I went in 2 years ago I saw my cancer center was using the Varian TrueBeam, which I guess is a descendent of that RapidArc machine. They're still using that machine now, but of course it's only been a couple years.
When I saw my MO a couple months ago he wanted me to go on Pluvicto. I won't claim to know a lot about it, but I wanted to investigate my options. I had an upcoming annual checkup with my RO and discussed it with him and decided on letting the RO treat me instead. One thing that bothers me a bit about my current cancer center is that the MO and RO don't seem to work together as a team as well as I saw at the cancer center I went to in 2010, so I have to advocate for myself more. In fact, in 2022 I was the one who inquired about seeing an RO, my MO went along with it but I honestly feel he should have pointed me in that direction without my prompting.
If I were in your shoes, based on what little I know, I'd recommend you go with the radiation therapy and possibly give some consideration to what sort of technology they have, if that's an option for you.
Thanks Velobard
I am asking the same question as "RetiredDoc" (quoting his message):
If you are oligo with the known disease limited to your pelvic area and you haven't yet had external radiation to your pelvis, why would Radium 223 therapy even be a consideration at this point?
Thanks TCMG.
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