Hi guys,
I wanted to let you know I just had a radical prostectomy. Surgery went well. One of my lymph nodes has metastatic adeno carcinoma. My doctor said I should have radiation in a few months. I have a Gleason score of 9. Did any of you have similar situation and if so, did you undergo a different treatment besides radiation. I'm nervous to have radiation in this pandemic.Thank you.
You can stay on ADT for many months before having the radiation. In fact, this is what a panel of ROs just recommended:
ADT for a few months might get your PSA to undetectable / zero ..and then you can start hoping for ADT holiday.
Is ADT increasingly your chance of getting dementia?That is what I read about it somewhere.
Yes. That is correct. Long term ADT does cause cognitive impairment leading to loss of short term memory down the road. But, its extent varies from one person to another.
If you want to reduce chance of dementia, eat good amount of colorful, vegetables and fruits which have anti oxidant and anti inflammatory effect. Keeping the brain active by reading, thinking and solving problems can also somewhat protect from dementia.
Every medical professional I’ve ever heard speak has said that if you are going to have a specific treatment, the earlier you have it the more effective the results. Waiting “years” to undertake treatment is not something I would do unless I decided to surrender to the disease or die from some other comorbidity.
Before one even gets to "if" you are going to have a specific treatment, one should consider the true NEED, and consider exactly WHY earlier is better if the treatment is not even definitively curative.
The surgeon may say you NEED surgery (tomorrow!), the radiation oncologist may say you NEED radiation (tomorrow!), the medical oncologist may say you NEED chemo or hormone therapy (tomorrow!), but can they all be right, always? If they are, how come they often disagree with each other, even within their same specialty?
Patients also need to consider that "some other comorbidity" can be the direct or indirect result of the medical intervention itself!
It may be a minority position, but it is not uncommon for some medical professionals to suggest systemic treatment only (like ADT), even for what may appear to be localized PC. Anthony Horan, for one, believes that both surgery and radiation do more harm than good, for many men, when done early. He leans towards active surveillance or early ADT if asymptomatic, with surgery and radiation as interventions more appropriate to specific symptoms.
Few would disagree that beginning some form of hormonal therapy (ADT, antiandrogen, or estrogen) right away is a good course of action here, but I think there is plenty of room for debate on the immediate need for radiation.
No treatment is “definitively curative”. I’m not aware of any drug that is remotely “curative”. IF one decides on a potentially “curative” treatment, waiting years to have it seems contrary to every medical opinion I’ve heard in the 14+ years since I was diagnosed. With regard to side effects, I personally would rather go through radiation or prostatectomy again rather than taking Lupron again.
What are the potentially “curative” treatments for metastatic cancer? I would be wary of any medical professional who suggests he can offer to cure metastatic cancer rather than simply treat it.
I would rather not go through radiation or prostatectomy OR taking Lupron, which is why I mentioned the alternatives of antiandrogen or estrogen therapy, which have reduced side effect profiles.
Dr. Horan suggests that some men may go through radiation or prostatectomy without it really being curative, only to end up on hormonal therapy anyway (for their incurable mPC). So he is one who suggests possibly skipping those treatments altogether and going directly to ADT, earlier rather than later, and using radiation to treat symptoms only if and when the need arises.
I am just pointing out that there is wide disagreement within the medical community, as a suggestion to the OP that he should consider a range of opinions (and their possibly biased sources) rather than only one or two.
Every case is unique.
After being diagnosed at age 54 with Gleason 7, I achieved remissions of 1 year with prostatectomy, 7.5 years with salvage radiation of the local area, and now 3 years and counting with Taxotere, radiation of additional lymph nodes, and 9 months of Lupron.
I always get multiple opinions before treatment, and choose my medical team members based on their experience, lack of bias, and relative humility. I feel fortunate to have one of the most experienced prostate oncologists in the world: prostateoncology.com/prosta...
Two of my oncologists now give me a 70+% change of being "cured". I take that with a grain of salt, and take any recurrences of my cancer very seriously. I shudder to think where I would be if I had delayed any of my treatments for more than a few months (except for Lupron which I suspect might have done more harm than good in my case).
Again, every case is unique. That's why I try to avoid prescribing or discouraging specific treatments to anyone else and stick to sharing my experience and scientific information I've learned.
I try to weigh in when I see potential misinformation being shared as advice, and "waiting years" to have a treatment (if you think you need that treatment) seemed contrary to every credible medical opinion I've ever heard.
The simple fact is, some doctors DO say delaying radiation in favor of ADT can be an acceptable (or even preferable) option, and by doing so they are NOT saying "surrender to the disease or die from some other comorbidity".
That doctors (or patients) have differing opinions is NOT "misinformation", and when a poster here explicitly states he is only giving his opinion, that is NOT "advice."
You say you try to avoid discouraging specific treatments, but you seem to be the only one in this thread giving advice, by implying a given course of action (ADT alone) may be unadvisable.
What would be the basis for the implication that radiation within a matter of months is necessarily the best possible course of action?
This is from recent Johns Hopkins studies:
"Characteristics of patients most likely NOT to benefit from radiation after prostatectomy:
- Gleason score of 8 or higher
- Positive seminal vesicles or lymph nodes
- PSA recurrence within a year after surgery"
"no patient with a Gleason score greater than 7, positive lymph nodes or positive seminal vesicles responded favorably to radiation therapy"
"The researchers were surprised to find that if radiation therapy in patients with elevated PSA levels was delayed until the local recurrence was big enough for a doctor to feel it, these patients appeared to do just as well as those who received radiation earlier."
Can you please cite sources of medical opinions or evidence supporting the assertion that waiting “years” for the treatment Vios is considering may be a good idea for him at his stage? In the 14 years I’ve studied prostate cancer, I’ve never read or heard about any doctor or survivor suggest waiting “years” to undergo any treatment any patient is seriously considering for advanced PCa. Thank you.
I already cited author Dr. Horan (urologist), and another would be Dr. Bob Liebowitz (oncologist), both of whom believe PC is inherently systemic and recommend ADT and/or chemo over surgery and/or radiation (except when those are needed to address specific symptoms).
My reading of Vios' question is that he is strongly considering near-term radiation because one doctor (his doctor) strongly suggests it. Nobody here is telling him NOT to get it, but just suggesting that conflicting medical opinion exists. To assert that there are no medical professionals who would ever suggest the option of skipping radiation now, potentially for years, is just factually wrong.
That some doctors might not think radiation is necessarily needed after RP (for months, years or even forever) reflects the fact that different options for treatment do not always reflect the consensus standard of care. Doctors who stray from the majority are not wrong simply because they are in the minority.
My question about Vios's situation was not focused on which treatment(s) might be advisable, but rather his question about timing. IF either of the doctors you mentioned thought that radiation would be an optimal treatment for a specific case, I doubt they would advise a patient to wait "years" to have it.
I've seen many people in support groups express bias against surgery or radiation, and some try (with subtlety or otherwise) to discourage others from those treatments. I think there are inherent population biases in support groups because they almost never include guys who have had great "curative" success with surgery or radiation with minimal side effects. Consequently, I've seen over-representation in support group members expressing negative thoughts about efficacy and side effects of those treatments.
Lupron seems to be the first "go to" option suggested by doctors and advanced support groups for recurrences. It's efficacy is questionable in the long term for younger guys, and it has several (and potentially serious) short and long term side effects for most who take it. I also understand that after 10 years of use, about 50% of cases become Testosterone independent. When I see Lupron side effects overlooked so easily by so many people, it makes me wonder why pharmaceuticals get away with little criticism while surgeons and radiation oncologists get so many bad raps for using their treatments.
Bottom line is every guy and every case are unique. One size fits one guy. Without knowing more about Vios's case, I have no idea what treatment(s) I would choose in his situation. I do know I would not wait years to get a treatment if I expected to live more than a decade or two. But that's just me.
I would be tempted to start ADT now to put them to sleep and then move to radiotherapy when possible.
My reasoning would be that the ADT will stop them dividing and then while they are still hormone sensitive give them a dose of radiation.
Have you got a post RP level of PSA?
Not yet probably in a month or so.
.Have you considered genetic testing? This could help determine an effective. course of treatment for you
Never heard of this option.How exactly genetic testing might help in treatment options?
Thank you.
Definitely worth a discussion with your oncologist. I was tested and was found to have BRCA2+ mutation. As a result, I was put on Olaparib PARP inhibitor after my RP. My PSA has since been undetectable for over a year. This is what precision medicine is all about.
Most like to do radiation (RT) after good bladder control is achieved. I was told the bladder control you have when you begin RT is likely the control you will end up with. There is usually not much if any bladder control progress after RT.
The usual procedure at this point is an ADT drug (Lupron) for a few months then have the radiation treatment.
Yah I'm similar. Gleason 9, RARP, SV+, bladder neck invasion, extra capsular extension, but no lymph nodes found.
I suspect there are lymph nodes involved but they just didn't find them.
I had surgery last April and have just started SRT. I started ADT one month ago.
I waited until my BCR was confirmed before committing to radiation.
For your confirmed lymph node involvement I would wait until you regain good urinary control and then go for your radiation.
I would also wait to see how your psa responds and how quickly. To me, that would be the info to wait for before starting your ADT.
I'm not concerned with going to the hospital right now for my treatments as they are taking many extra precautions. Everyone is wearing masks and I am as well.
By the time you go for radiation it probably won't be a concern.
I had radiation to the lymph node area as part of a greater radiation treatment plan (surgery was not an option for me).
At Dx, I was also a G9 (May 2017).
I have had no lingering side effects, which has been a blessing.
I am assuming that you'd get a 'proportional' dose to the area - NOT the max because the max is not called for.
The side effects (for me) only lasted a few weeks (I got the MAX) and they were minimal.
Today, I have NO side effects whatsover - the radiation was not a bad experience for me.
Hopefully, when you are set to go, things will be OK - statistically, most men don't have to manage long term side effects from THIS type of treatment.
Keep us posted ....
I had RP in Feb of last year with 2 lymph nodes. I had an immediate BCR of .9 afterwards. UGH! My incontinence was too bad to allow SRT until it got better and that was not until Oct. Went on Lupron in March and then added Zytiga in April to keep things under control. By the end of May I was undetectable and have stayed there. Radiation which ended in November was pretty easy except for some fatigue towards the end. I did try and workout every day during that period. Also Lupron and Zytiga has been a breeze up to this point. Loss of body hair and a bit of muscle loss, but other than that it has been a non-issue. I attribute that to the fact that I still workout 5-6 days a week.
One interesting fact is that when I started radiation, my incontinence was still an issue. I did not need a pad but I would leak a few drops 2-4 x a day. It got a little worse towards the end of RT. Now 4+ months after, it has improved to where I only leak a few drops maybe 2 or 3 times a week! Very happy about that!
I had a robotic prostatectomy in July. One week after the surgeon declared me "cancer free." He was wrong. First PSA shortly after was 0.5 then 0.9 then 1.8. Fast and doubling. Axumin scan and PSMA revealed uptake in right lymph node. My UCLA oncologist started me on Casodex then switched to Lupron injections which brought the PSA down to undetectable. I then began 37 sessions of pelvic radiation at the City of Hope which I just finished. Next Lupron injection is in June.
The standard is RPD followed by 39 sessions of RAD of the prostate bed..... How soon to get the Rad is up to your MO/RO and yourself. Just make sure the RO has performed many and make sure you protect yourself. Check out the "spaceOAR" and be aware that sometimes the after effects of RAD show up (years) later...
Vio con Dios.....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 04/09/2020 4:30 PM DST
Out hospital is still doing radiation. I had radiation this winter and exposure to others is minimal. I had ADT befoore radiation, as Tall-allen noted. I quit ADT before ending radiation. The testos is going up and the PSA is stable, not changing.
The common thing said is get your incontinence back to where your happy with it first BEFORE salvage radiation.
Do Kegel exercises EVERY night before sleep to improve incontinence. This may take a few months to six months to a year depending on how bad your incontinence is.
It is said that once you have pelvic radiation, incontinence won't get better and my get worse.
Get scanned right away before you start ADT because ADT works against finding your cancer on a scan.
Learn your doubling time right away before ADT by beginning PSA testing monthly. Continue PSA testing after starting ADT.
Choline, PSMA, and Acumin are your choices for PET scans for the entire body (from eyes to thighs).
MRIs are also usualy given at the same time directed at your pelvic region only.
You may still be able to get both PSMA and Choline and only pay for the Choline scan in a clinical trial at MAYO in Rochester MN, Dr Kwon. That will cost you or your insurance between $14k to $16k.
Let Dr Kwon give you a second opinion on you cancer.
Read about Dr Kwon on the internet, watch his videos.
Read about the SPPORT clinical trial results.
Radiation for you could be pelvic bed and lymph node IMRT radiation.
You will likely start ADT several months prior to radiation, as it makes it more effective. You will likely be on ADT for some amount if time from 6 months to two years.
Make the appointment for the second appointment today and get scanned ASAP if possible.
Best wishes and best of luck to you.
Thank you for much for such a great step by step advice!
I just had my first talk over the phone with my new RO .
He was telling that next month in June after my second PSA I will most likely have to get Lupron shots and Casodex for the next 24 months.,therapy for my incontinence and later radiation.
He already scheduled me for MRI and said said the other Axumin PET scan I don’t qualify if my PSA is not above 2.
I am looking for a second opinion and love to go to Mayo Clinic but traveling now with the virus seems very risky. I live in Chicago .
I am still trying to wrap my head around this diagnosis as after the biopsy I had my RP in a matter of days and now treatment probably for the rest of my life.
Cuddling Up After Pluvicto Treatment
PSA 3.12 after 3/17 radical prostatectomy. Future treatment thoughts?
SBRT Treatment Follow Up
PSA after the radical prostatectomy
