I have to decide whether to radiate the prostate or not. I was diagnosed in February with Gleason 8 T4N1M1 PC with one met to the hip-bone and 8+ affected lymph nodes in the pelvic area. Currently on Firmagon and Erleada with good response. My PSA is still declining - now at 0.63 (down from a high of 63.3), some hip pain but less than at diagnosis and very tolerable, and I generally feel very good with only hot flashes, mostly at night.
I have discussed triplet therapy with my MO but she is reluctant to go with it until she gets more information on whether it would be beneficial to me (she is waiting to see stratification data).
I have not received any radiation at this point. My RO and I have discussed the STAMPEDE trial that indicates benefits of radiation to the prostate for patients with a low metastatic load. Here is my conundrum: the one met to the hip-bone and the affected lymph nodes in the pelvic area are fairly large, which put me borderline high load. My RO says there is no indication radiation of the prostate will necessarily benefit me because I am tending towards a high load, but there is always the possibility it could be beneficial. We did discuss the possible side effects of radiation.
So, the decision is mine on whether to radiate the prostate or not. If I decide to go ahead, he is recommending 5 fractions of 35 greys delivered every other day. I am seriously considering going ahead. Would like to hear from anyone in a similar situation to mine. Did you choose radiation? What have your side effects been? What made you decide to radiate or not to radiate? Any regrets? I must admit my main concern is possible loss of bowel function because of the radiation. Any thoughts? Also interested in hearing from anyone who has had radiation to the prostate and what negative side effects they have experienced.
The data showing a benefit to prostate debulking with radiation in men with up to 3 mets only counts bone metastases and non-pelvic LNs. Would your RO be willing to give you whole pelvic radiation, or just the prostate? Would he be willing to zap the site on your hip bone too? There is no known benefit, but why not?
The new STAMPEDE data is shows no benefit to docetaxel when there are multiple nodes ± bone metastases.
Thank you. i believe the RO is suggesting only the prostate but I will double check with him. I think he is concerned about damaging other tissue . I think he wants to hold back on radiating the bone as it can increase the risk of bone fracture and may reduce the amount of radiation I could take in the future for relief of bone pain.
It only applies to newly diagnosed men (and only with lymph nodes detected by CT or MRI imaging). It says that abiraterone is a better initial treatment in that case. Docetaxel should be used afterward.
I would get a second opinion with ROs in centers of excellence, people like Dr Roach at UCSF, Dr. D'Ámico a Dana Farber, Dr. Kishan at UCLA and ROs at MD Anderson or Memorial Sloan Kettering Center. It is a very important decision.
why not brachytherapy ( radioactive seed implants) to debulk the prostate and a form of IMRT such as tomotherspy for the metastases. Properly placed seeds minimize risks to bowell. And systemic side effects are often mild. Discomfort on urination and fatigue and some diminishef appetite.
I was an early adopter of radiotherapy when I was diagnosed in2014 T4n1m1a but only 3 sites. My onco described it as "there is some evidence that blasting the mother ship may help". Here I am 8 years on my psa has just started to rise after 7 years on zytega,
The only side effect I had was bleeding from my bottom about 8 months after the radiotherapy that was sorted easily enough and painlessly.
would I do it again, yes. men I knew who were similar to me who didnt have radiotherapy are not with us anymore. Not scientific I know but its all I have.
Did they only irradiate your prostate or the pelvic lymph nodes as well?
I am currently on Eligard + darolutamide + docetaxel (just finished cycle 4/6). RO definitely wants to do the prostate with IMRT (20 sessions over 4 weeks). He did not want to do the retro peritoneal LN seen on the PSMA PET scan due to concerns about bowel side effects (which I agree with; he also was hopeful the ADT and chemo would help address them also). But, I’m thinking that if he’s going to do the prostate, it might be good so do the adjacent pelvic lymph nodes as well.
I always think its good to ask. I always go prepared to any meeting with things I read on this and other sites so I would ask "Why are you not giving me RT to the lymph nodes" and see what the response is
I had a similar situation, the decision was to radiate the prostate only - 68 Gy after priming with Enzalutamide 2 weeks ahead. Worked very well, no side effects and PSA down to 0.03.
You may need to ask what are the long term implications for any burning/ruining either of the bladder sphincters or bowel tissues. This damage can be reduced by cyberknife-style radiation delivery. My inner bladder sphincter was burnt and it made the frequency, urgency and flow issues a continuing nightmare - getting up many times a night regardless of how hydrated or unhydrated I was. QOL dipped from sheer exhaustion and has never been the same… nerve damage. And as with breast cancer research the radiation can initiate additional tumours… something to consider and talk about with your Dr or specialist. Mind you they all talk-up their procedures - a bit disingenuous.
I was concerned about future problems like you describe. So I went with the prostatectomy. Thank you for sharing what you've been through. People need to know what can happen. Although I will say I really miss my prostate. But my sphincter and bowels are doing well.
it boils down to a personal decision based on a Radiation Oncologist and Medical Oncologist who have experience treating your level of disease. If available you want a real pro who has done thousands of procedures. Look at their track records. They will know their capabilities.
Unknown with my primary treatment, I already had micro-metastatic disease spreading. Both my Brachytherapy RO and my IMRT RO had done thousands of procedures. Really zero side effects until 19 years later, Radiation Cystitis reared it’s head, it is very common.
Best advice, agree with a plan and move on; never second guessing a what if scenario. I don’t know about today, but in 2003, my research showed that the knowledge and skill of the treating physician specializing in geniturlogical cancer was vastly different when compared to that of a generalist. Perhaps I am biased. I wish you the best.
I was dx in 2014, Gleason 9 with mets in my spine, pelvis, sternum and ribs along with a few nodes. I opted to have my prostate and several nodes radiated (debulked) early on in my treatment which included chemo per CHAARTED and triple ADT. My PCa was dormant for over six years until recently when it became detectable again on an ultra sensitive PCA test.
I recall early on when I was a patient of Snuffy Myers and he said that radiating my prostate was one of the best things I’ve done - kill the mothership. It also prevents further metastasis from spreading locally to hard to treat areas.
I think yes to radiation. Also would say that how to pick what subgroup benefits more of less with taxanes is still not decided. Reference given by Tall Allen concedes this. Even though docetaxel made me sicker than I care to remember my response to it was nothing short of miraculous. I think the thing to always keep in mind is this is not Philadelphia Chromosome CML but the polar opposite i.e. an incredibly heterogenous cancer right from the start. This means multimodal therapy should probably always be considered.
Tough situation. My bias is towards aggressive full radiation treatment to include the full pelvic lymph node fields where most of your disease (visible) is. As well as the prostate which feeds and supports ongoing metastasis. As Tall Allen suggests and others. And consider spot radiation to the one painful bone lesion now also. It won’t get better on its own.
The most advanced precision IMRT systems have very precise targeting such as VMAT and others. So collateral damage to other organs is better controlled. Benefits may be worth the risk. Your call.
But definitely get 2nd RO consultation virtually at center of excellence. Have all scans, current labs and path reports sent to them. Including a PSMA PET scan which you need if not already done.
I encourage you to explore this now and be willing to travel and bear extra costs if needed. You cannot come back to this point after it has progressed further. Get the 2nd expert opinion at least before you decide.
My husband is currently getting radiation via Cyberknife to the prostate. He was diagnosed 6 months ago with Mets throughout his lymph system. He is on Lupron and was discontinued from Xytiga because of effect to his liver. So far, the only side effect is feeling fatigued. He has two more sessions -5 total- and done.
I don't have any visible mets now, but I had 15 bone mets when I was diagnosed 4.5 years ago.
My PSA nadir was 0.1 and started to rise last year. At 1.25 PSA I had a PSMA PET scan and decided to irradiate my prostate in order to be able to stay on Degarelix injections only.
The cancer in my prostate turned CRPC. The SUV max value of my prostate cancer was 14 on the PSMA PET scan with no visible mets on any scan. (Nuclear Medicine Bone scan, CT scan with contrast, FDG PET scan and PSMA PET scan.)
I believe that was a good decision to radiate your prostate in order to avoid local spread as you had to stop Abiraterone plus Prednisone.
I had SBRT 5 sessions Nov 2020 to the prostate and One 6 gy to hip. This was done at Grand River Cancer Centre in Kitchener Ontario. There would be some hospitals in Hamilton and or Toronto.
I chose radiation over surgery, (14 years ago), and have never regretted it. I had no side effects from radiation. But the benefit was that I know my metastasis was not caused by surgery. Most likely it was from biopsy. In your case I would think radiation would be the answer to your mets.
Hey Liguria ! I too was gl. 4+4=8 and T4 ,which was a bitch . I had tubes and a foley then internal stents always colonized with uti’s for a total of two yrs . Pc tumors blocked urethra and bladder causing k failure . I was 53 .. I’m lucky to be alive over 7 yrs later . I did Lupron and 8 wks imrt plus a now defunct test drug stopping adrenal T . The good news for me is that it all .worked . Plus many other improvements to my diet and nutrition . After 2 yrs of heavy suffering Ished the tubes & stents .The pc fled me right after imrt ..I now deal with no t and hypogonadism . For me it’s better that the pc eating me alive … Radiation was a powerful poison for me . Go for it . Pc needs to be put down hard and final .Any bad habits need to go .also . Live real healthy now . Don’t ever give up dear sir . We fight for survival with this blasted disease . Good luck!
Hi Liguria, there are some similarities between yourself and my husband. He was diagnosed in March and is on Prostap (replaced Firmagon to reduce trips to GP) and Erleada.
He is however polymetastatic with a de-novo neuroendocrine element.
His oncologist is a primary lead in some of the larger trials and whilst he thought my husband was not suitable for chemotherapy he has proceeded with radiotherapy to the prostate. His reasoning for the radiotherapy was that the more recent study outcomes are showing improved ‘disease control’ (what ever that means) even in heavy burden cases.
They inserted the spaceoar gel around six weeks before starting treatment and he has just received dose 14 out of 20 fractions, delivered over four weeks. He is finding the additional side effects minimal at the moment. An irritable bladder that requires him to get up every couple of hours in the night rather than the two to three times he was before, and a few more trips to the bathroom during the day, but nothing too onerous. The treatment centre have reassured him that this is normal and will improve over the couple of weeks after the treatment has finished.
I think we feel glad it is being done. His prognosis falls rather deeply into the palliative care arena, and in our heads we imagine that frying the prostate may reduce the advancement of the disease even if only in the immediate area/future.
As this forum has taught us, I guess only time will tell, and that treatment options play out very differently for each individual case. Hope this helps though. Good luck.
Very helpful, thank you. It sounds like your husband and I are very much in the same spot with our cancers, and I am tending to go the same route as he has. Lets keep our fingers crossed and hope for the best!
My treatment was ADT plus chemotherapy and 20 radiation treatments to the prostate. Was standard of care for stage 4 metastatic prostate cancer in 2017 when I was diagnosed at 52 years old. The radiation was not a problem at all. Minor bowel irritation. I have to pee frequently which is okay because before treatment I had difficulty urinating due to a enlarged prostate.
Hi, my dad is currently going through radiation to the prostrate and LN. He has been running to the toilet due to frequent need to pass urine. And he also experienced not being able to empty fully and sometimes feel a burning sensation. Did you experienced all these?
Yes, these are common side effects. I had the feeling that I had to have a bowel movement all the time. I remember it was important to drink lots of water before treatment.
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