So my father has a urologist, Radiologist & oncologist. Father started Firmagon Injections on Nov 10th and radiation Dec 12th (yesterday).
1. Urologist started him on firmagon on Nov 10th to prevent spread while awaiting further treatment. It seems to have worked.. CT Scan update today was that no far spread. Prostate tumor plus 3 close lymph nodes only.
2. Urologist and Radiologist speak and tell my father.. wait 2 months to start radiation and it will eliminate your need for a catheter. Starting radiation now will be a high probability that you will need a catheter a few weeks into treatment and then for the duration of the 5-8 weeks of radiation. My father chose to start radiation right away regardless to attack this cancer right away
3. Here comes the issue. He has met with the oncologist today. Oncologist was not aware that he has started radiation. Oncologist said it takes 2-3 minutes for him to bring up a patient file and with the number of patients he has he does not have the time. Therefore, the Oncologist said why did you start radiation?? we have to wait for the second bone scan results in January.
-Oncologist saying if bone scan comes back clear then there is no need to blast the whole pelvic area with radiation .. instead only to the prostate itself.
-Oncologist said he was going to add in pills along side his ADT (Firmagon) but these pills won't work with radiation going on. (We don't even know what these pills are but they are not chemo)
My Questions:
1. What do we do?! My dad is thinking just continue with radiation which he has again later tonight and every weekday for the next 5-8 weeks. Bone scan results will come and we will see what those are at the time they come in but why hold off radiation at this point.
2. I know the timing and order of treatment is very important and the fact that this oncologist did not stay in touch with the radiologist and urologist leaves us hanging wondering are we doing the best thing for him?! Hoping radiation to whole pelvic area is the best first step alongside the firmagon injections?? (possibly a boost to the lymph noes my dad will ask if that is what they are doing)
3. what are these pills that this oncologist is saying.. why won't they work with radiation? and are the pills alongside firmagon a better treatment plan? is it too late now that he has started radiation (2nd day of it tonight)
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FormulaRob
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Sounds like he needs a new oncologist who will give him the time he needs and will coordinate with the other docs. Talk to the radiation oncologist & solicit a referral from them (or the urologist or both).
He sees radiologist every friday after his radiation session so he will be able to bring this all up to him on Friday and possibly get referred to new oncologist. Worried radiation from yesterday to friday could affect treatment options. Who the hell knows my mind is spinning not knowing what or if there is anything for me to do at this very moment
The only pill I can think of would be Casodex which is another anti-androgen that suppresses other parts of the body from making testosterone. Reading your dad’s story it sounds as if you have too many doctors trying to treat dad and the doctors are not communicating.
I would figure out which doctor should “drive the bus” right now. Choose the doctor who will communicate with you, answer your questions and someone who you and dad feel comfortable with. Research the doctors online. View their CVs and see how other patients rate them. I hope this helps. One other thing, when I visit my doctor, I ALWAYS have a list of questions to address; if the doctor does not have the time to answer your questions and address your concerns, find a different doctor.
He mentioned the pills act as a booster to the firmagon that he is now getting once per month so you sound right. Worried radiation from yesterday to friday could affect treatment options. Who the hell knows my mind is spinning not knowing what or if there is anything for me to do at this very moment
I didn't know we could look up the reviews on them. I will definitely look tonight I need to get the names from my dad.
We just thought we would have them work together as a team. This appointment really made us feel alarmed as we are counting on them here.
IMHO, and maybe others can say yea or nay, if you need an MO in your cancer care the MO is the lead of your cancer team. The RO and Uro should be discussing any treatment they are suggesting with the MO before decision is made. I'm surprised RO and Uro did not confer with the MO.
As far as what to do despite your feeling the MO let you down I would lean towards what your MO has recommended.
Thank you for clearing this up. He was busy this week sort of talking to all of them and having them work as a team.
They are mentioning that they will either advise him to start chemo shortly or maybe in 5 months from now depending on the bone scan results at the end of this month.
I thought chemo was only for major spread but I am sure we’ll get more info
Sounds like a lack of communication all around. IMHO the urologist should have referred you to the MO, not the RO. As stated above the MO is the primary caregiver and everything should go through the MO. After consultation with the MO, if it was appropriate the RO should have then been consulted. The MO can’t be faulted for not being aware of a treatment if they were not consulted.
I would have thought the RO would have gone to the MO on their own before starting treatment. At this point the urologist is more in the background while the oncologists treat you. I have a six monthly urologist appointment to discuss/consult more general urological health topics. We talk about the cancer but it’s not the primary purpose of the appointment. I get my Tamsulosin and sildenafil from the urologist.
thank you for helping clear this up for us. We were blaming the MO only because the other two doctors seemed more involved but at the end of the day we just need them to help us as a team. My father discussed this with them and hope he seems an improvement on them working together after this
In the profile, you wrote "September 2022 he had a CT Scan and a Bone Scan. Bone scan detected no spread to any bones .. spine was clear and pelvic bone was clear. The CT scan detected no spread to organs. Although it did detect a 10mm right external iliac node involvement confirming that this cancer has spread to his lymph nodes.." So why is he getting another bone scan just 3 months later? Who ordered it?.
Based on that, radiation is the right thing to do, and it makes sense to let the hormone therapy shrink the prostate first so that the swelling from the radiation won't temporarily block his peeing. The RO is probably already planning an extra boost dose to the external iliac node
He may be able to get abiraterone (pills) based on this STAMPEDE study, although Canada may not yet have approved it as SOC. All you can do is ask. (I think you said he rejected doing the clinical trial where he could've gotten it.)
Thanks for the reply as always Allen. The oncologist ordered the new scans. The reasoning was because the scans came back relatively clean despite the high PSA and since they discovered a group 5 cancer which I believe is Gleason score of 9.. they were not sure if more spread would occur in the time from the last scans to the start of treatment.
So CT scan still relatively clean. Just 3 close by lymph nodes. Bone scan he will now do on Dec 20th and results to follow maybe a week later.
Thanks for your input on the treatment plan. I too believe radiation with extra boost to lymph nodes is the right way to go. Hormon treatment to shrink the tumour further first does sound good but my father is eager to just treat this cancer and blast it right away.. he is willing to deal with the catheter if it comes to that.
He did not entertain the clinical trial BUT we can ask Friday morning with the radiologist about the stampede pills. If he can’t answer that himself hopefully he himself can contact the oncologist or urologist to discuss it with them.
Just quick clarification, a radiologist works with x-rays. The Dr giving your dad radiation is a Radiation Oncologist, the one that gives him ADT is a Medical Oncologist and his other Dr is a urologist. As TA said I am curious why an additional bone scan would be required. Maybe there's a reason but I would be curious what that is.
My MO is my lead Dr. I was informed to wait 2 months after starting ADT before starting radiation. My RO said I could wait longer if I wanted but I chose to start right away but he scheduled an additional MRI and attempted to biopsy a LN so I started closer to 3 months after the start of ADT.
Just relating how things went in my treatment. Not to say that it was the right way or the only way, just to let you know that much of what was said above I can relate with.
Thank you treedown. I thought I had a good grasp on the doctors but it appears I had it wrong still appreciate the clarification.
As for the second set of scans.. my father just told me they are because 1st week of September was too long ago compared to when he started getting ADT treatment (firmagon on Nov 10th.. followed by radiation on dec 12th)
That being said I read myself the results of the original 2 scans, and then I also read myself the results of this latest CT scan. 2nd bone scan will be done Dec 20th). You and Allen both have my questioning this for the first time as until now I thought it was just common practice. I’m wondering if it is possible that my father has not told me something or maybe they were thinking the high PSA must mean more spread and maybe thought the first scans in September showing no spread may be wrong)
The other possibility is that they may have saw a dark spot on pelvic bone first time around but it was not conclusive. I didn’t read this on the results but may have been verbally mentioned to my father.
I will try and get to the bottom of the reasoning of these second scans
Thank you for sharing your treatment start as well. What you had done seems to be in line with my fathers except he decided himself to only wait 1 month after hormone treatment instead of 3 more so because he just feels like this disease will progress without quick treatment. That may not be the case but starting radiation right away seems to have him in a more positive headspace
Other than avoiding a potential catheter , so far my father starting radiation right away rather than waiting a few more months seems to in the MO opinion .. mean that he could be receiving more radiation to more of that pelvic area than is actually needed. To me that’s not such a bad thing but we’ll see as we ask these questions Friday morning this week
I agree with the posts from TA and others. I had a RP and one lymph node was found to be malignant. Once the surgery was done the MO who had consulted with the team became the go to guy. I was started on Lupron well after the diagnosis to allow for healing and then also began radiation two months later. The only one I see is the MO now. This is at a very large US teaching hospital. The need to be confident of your doctor is critical in this fight.
thank you for your reply. So chemo was never part of your treatment plan? They’re already telling my dad he will start chemo now or in 5 months depending on bone scan results at the end of the month
With only spread to nearby lymph nodes I’m surprised they are saying chemo is needed: makes me think they see something we’re not aware of. Or maybe because Gleason score 9 is aggressive and they just want to hit it super aggressive regardless of very little spread
Very good that sounds very positive. I thought chemo was for only distant spread which is why I’m left wondering why they are telling my father he will need it with prostate cancer plus 3 lymph nodes. I would’ve expected a similar path to what you are getting.
We’ll have to ask more question on next visit. I wish you luck and success on your journey my friend
As others have said it sounds like you should be looking for a better oncologist. If your current doctor's support system will not allow him to read a patient's medical records, something is truly wrong. Not only should you be looking for a new doctor you should be reporting this medical office to the local medical board or whoever handles medical complaints in your state.
My oncologist's office is a mess with communication and I find it very frustrating but the doctor himself is very competent, good bedside manner and keeps current with new treatments and trials so I put up with the crappy support from the staff (the infusion center staff is great, it is just the front end office that mismanages everything)
But if my doctor did not have the time to prepare for my visit, I would be out of there.
it was worrying to hear how he responded. My father has talked to all three of them and hopes they are good from here on out. If they give him the impression or if one of them gives the impression that they are too busy for him he will definitely ask for a referral to replacement doctor
You go through enough during this fight, the one thing they should take care of for you is assuring you that you’re in the best hands / care
Although there is a communication and workload issue with your care team, unless I'm misreading your post, it seems that they are all saying basically the same thing. You say that the Urologist and Radiologist advised your father to wait 2 months to start radiation but your father chose to start right away. It's true that the Oncologist should have had time to read that in the notes but he is also saying you should have waited until January.
You need to decide who is your father's quarterback, the medical professional who quordinates and is ultimately responsible for his care. I believe it should be the oncologist, not the radiologist nor the urologist. This is a critical decision that should have already been made. Do it now. And if there is a lack of confidence in the oncologist, get someone else ASAP.
My father respected them equally I would say but you’re right; one has to take the lead. Two of them were positive telling him that he we’ll be fine ! And the MO told him 5 years to live despite not ruling out that he is still potentially curative . That is the reason the MO sort of was my fathers least favourite at the start here
in my opinion and your father were me I would want a scan before I irradiated the entire pelvic area. But I don’t know your father‘s PSA level. If the PSA is above 2.0 he should get a PSMA PET and a bone scan. The PSMA PET will have more sensitivity than the bone scan. But both have their place. If my PSA was high and I had to choose between one and the other I would have a PSMA PET over a bone scan.
Definitely though you want to get a scan of the pelvic area first to see if there’s metastasis. The PSMA PET is gonna be better if the PSA is high. That’s what I would do.
I am a similar example to your father in that I started salvage radiation before I was dry. My RO warned me that if I did that I would have to wear pads for the rest of my life. But I made the decision and went ahead because I like your father did not want the cancer to spread. And I will have to wear pads for the rest of my life because once I radiated before I was dry I was never going to be dry. I don’t know if that’s the same situation your father has. But it’s one example of what happens if you start treatment early before you have a chance to heal.
But I understand where your father is coming from and I had the same concern. Nobody could assure me that the cancer would not spread while I was on an androgen deprivation treatment. GOOD LUCK And let us know how everything turns out. If you want to check my site I have a lot of good articles on scans and they’re use. If you can’t find them reply and let me know and I’ll send you a link. Thanks.
hey Montana thank you for the reply. It sounds like you’ve made the same decision as my father. Honestly if I put myself in the shoes of either of you I think I would just choose to start right away as well as living a long life would be my top priority over side effects
His PSA dropped from 226PSA to 3.73PSA In just one month of firmagon. Not sure if that is something to be happy about or if it becomes just a number at this point now that it has spread to 3 close lymph nodes and has a Gleason score 9.
With no other spread they are suggesting chemo now or In 5 months. I thought chemo was only for distant spread?
I will go through your posts of your profile too since it sounds like you might have a lot of relatable info that could help my dad
No problem FormulaRob...we are all glad to share what happened to us and then hopefully that helps those coming along behind us...or ahead! The issue with PSA is that when its low the cancer is "not growing," but no one would answer my questions as to is the 'spreading!' That was the $1 million dollar question that I could not get a straight answer to. If your read my background I had diligently gotten a DRE and PSA from the same Urologist for 10 years after I had been diagnosed with a 'palpable' tumor...but my PSA was low and it was barely increasing so 'watchful waiting' was the correct path for me...little did know I that the tumor had moved to the front part of my prostate, was growing and even at a PSA of 4.0 was now 1/3d of my gland...and no one knew it was there. I had two Urologists check and neither 'felt' anything...so, I lost 10 years of time while this little monster grew...so when it came time again to decide if I should wait some more to get dry OR get radiated right away after surgery when my PSA did not drop, I immediately opted for treatment...I was not going to make the same mistake twice. With this disease you wait while playing the numbers; it may not spread, or it may. Its a 'statistical' game that you can win or you can lose...now acting early may not help, but waiting to act takes away options...its a tough call. I opted for being more conservative and treating before I had evidence of spread...
Good luck to your Dad...tell him we all have a better chance of passing away from something else, other than PCa, as long as we dont take our eye of the ball...we cant take anything for granted and have to live with this disease as our constant companion...an invited guest you cant get rid of...its sad in a way, yet as he stabilizes and adjusts and accepts what has been dealt him many things can happen...you start to enjoy every cup of coffee, each conversation and any sunset...life comes into bright focus again...I know now it may seem like a dream, but give it some time...I am hopeful your Dad will enjoy a long, full life. Cheers
I appreciate this reply my friend. Seeing my father break down today was difficult and strange . I came to read your reply again to help myself feel more positive and in turn try and pass some positivity to him.
This uninvited guest really flipped our lives upside down man and honestly today being Christmas just makes things seem more depressing. So many guys here dealing with this and positive replies like yours really helps ❤️
I agree with TA and have the experience of RMontana. I had pelvic radiation as I didn't want the spread. I wore a pad until I got the artificial spincture. Love it. Dry. PSA .006.
No chemo. testosterone suppression then full pelvic radiation. No treatment now x 1.5 year. Psa .006. 6 mo test is next January. testosterone is now 256. Prolia every 6 mo for osteoporosis as I had 2 pelvic fractures. In January if PSA os .006, I will stop Prolia.
I chose radiation because my goal is to kill every little beastie if they are still in the pelvic area. So far, so good.
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