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Posted 4/30/2022 11:13 PM (GMT 0)
My husband’s PSA reading was 7 so he had Biopsy and MRI done 2 months later. On Feb 21, he was told that his Gleason score 3+4 six days before his 62 birthday. He has 2 teleconferences with an Oncologist and Radiologist and now he has scheduled for Brachytherapy HDR on May 10, 2022. I am hearing impaired and have a great fears of doctors so I have not participated in any of these teleconferences. I want my husband to get treated but I feel that we have not done much of our homework and I don’t want him rushing into it. I have read online about prostate cancer treatments and I am so overwhelming with all of them. I am scared and I don’t know what to do. Please help and advise.
Posted 5/1/2022 2:26 AM (GMT 0)
Welcome - I guess the first question would be if his urologist referred him to the oncologist and radiation oncologist and for what reasons. Not meeting with doctors in person before deciding on treatment would not be advised as most like to check out the patient first. Treatment is probably indicated based on the limited data you have provided and a number of things could be proposed. He has time to evaluate his options and should not be pressured towards a specific treatment until he has checked out his options with a couple of specialists. He may have been proposed the correct treatment for his situation but should not jump at the first solution proposed.
Posted 5/1/2022 3:14 AM (GMT 0)

Somebody said...
and now he has scheduled for Brachytherapy HDR on May 10, 2022

Without any more information than this, it suggests to me the care decision is well intentioned. HDR brachytherapy is likely the lowest paying treatment protocol the hospital can perform, so they would be doing it for non-financial reasons.

But that assessment is made with huiuggeee gaps in information
Posted 5/1/2022 3:32 AM (GMT 0)
Thanks for your reply Mumbo. I am really appreciated it. The urologist told my husband the test results and he has scheduled an appointment with the urology oncologist. The pathology for core biopsy, MRI reports were sent directly to them. The radiation oncologist followed up a month later. Both appointments were teleconferences as they don’t do it in person. They determined the treatments from the PSA test, biopsy and MRI results reports. According to the oncologist there are no large lesions presented from the MRI but the biopsy indicated 3/14 are cancer. They said my husband is in favorable intermediate group but there is the presence of intraductal carcinoma of the prostate gland. They told him there are 2 treatment options: robot assisted laparoscopic or radiation but never suggested which one is appropriate for him. My husband prefers radiation and at the time and I thought if radiation can’t cure then we can do surgery later. Now I just learned from reading that surgery can’t be a second option, Cryotherapy. From what I read SBRT is less invasive and more common than HDR Brachytherapy. I am overwhelmed with all of the treatments as well as terminology’s and the more I read the more I am lost and terrified.
Posted 5/1/2022 4:13 AM (GMT 0)
I successfully used HDR brachytherapy nearly 12 years ago. It is a superior radiation treatment for intermediate men when compared to either external beam or permanent seeds brachytherapy. It is also typically better than surgery for expected side effects. Since it is interstitial it has generally fewer side effects than SBRT as less
Radiation is affecting healthy tissue since no beam goes through the body. It has been used for prostate cancer since 1981 so is well established procedure that you should have great confidence.

As to having it without a face to face with the radiation oncologist I would not have a problem. The doctor has everything he needs to make an assessment with the tests you have had. My radiation oncologist did not do anything in his assessment and discussion with me that could not be done on a zoom or telemedicine call.

Since it will be done in either one or two procedures it costs much less than traditional radiation or surgery and probably less than SBRT that usually takes 5 to 7 procedures. It is also much more convenient than most any other method with fewer procedures, less time required and less invasive. In my opinion the suggestion for HDRBT indicates a very good urologist and radiation oncologist. Let me know what specific questions I can answer from my very positive experience with HDRBT.
Posted 5/1/2022 5:22 AM (GMT 0)
Thanks so much for your reply JNF. You have given me some hopes as I am so down for what my husband has to go through. We have no support with PC as noone we know has it and our local support group is paused due to Covid. I have been blocking PC issue out since we received the bad news because I am suffering from anxieties with doctors, hospitals but I have to deal with it now. Cost is the least of my concerns as I want to make sure my husband will be treated with the most effective option for what he has with less side effects. These UCSF doctors did not suggested any options and told my husband that he has to choose whichever treatment he can live with it. I am worried that my husband is rushing to his decision but yet, because of the presence of intraductal carcinoma I am afraid if I talk to him out of it, things will getting worse later on. I am concerned about possibly of cancers from radiation in the future, but I can’t find anything online about its risk percentages. Please tell me about the side effects, I know it varies for everyone, but I am concerned about the quality of life and urinary continence/leakage, how was yours ? How long did it take you to be completely recovered from your treatment? Also from your profile, you have received hormonal treatments before receiving the radiation but nothing was prescribed to my husband. Is that varied from case to case? I hope you can help me with these questions and Thanks so much for your help again JNF.

Post Edited (ConfW) : 4/30/2022 11:46:16 PM (GMT-6)

Posted 5/1/2022 5:34 AM (GMT 0)
@JNF, I am concerned that we didn’t get the second opinion of the pathology report as I have read on this forum about Dr. J. Epstein at John Hopkins and thought perhaps we should do so. I would have preferred for my husband to do Active surveillance but the doctors are against it, saying that we have to do something. Their credentials are stellar and I am hoping/praying that we will be in good hands.
Posted 5/1/2022 9:27 AM (GMT 0)
At G7, he would not generally be considered for AS, especially with the possibility of intraductal PC. HDR is an excellent radiation therapy, JNF is one of our major HDR success stories on this forum.

Telehealth is one of those things that with Covid we've all had to learn to deal with. I'm going to make a guess and ask--just from some of the things you say, are you in the US? If not, where are you?
Posted 5/1/2022 10:56 AM (GMT 0)
Hello ConfW and welcome. We all understand that a prostate cancer diagnosis can be terrifying so we get your concern. Yes, it would be better if your husband confirmed his diagnosis with a second opinion on the biopsy slides done by Dr. Espstein at JHU. You still have time to do that and leave the appointment for the HDR Brachy. But if he has G7 it is unlikely that Active Surveillance is appropriate anyway.

The incidences of secondary cancer from modern radiation are extremely low so that should be not be a major consideration in your decision. Nor should you worry about the salvage options if the treatment fails. There are equally good salvage possibilities after a failed radiation treatment as there are after failed surgery. But the fact is, with your husband's diagnosis as we understand it, the HDR Brachytherapy is likely to cure him with minimal side effects.

We usually recommend that men diagnosed with prostate cancer check out multiple forms of treatment including surgery and different radiation options. You mentioned SBRT and that would also likely be a good option for your husband. Having said that, HDR Brachytherapy is usually a very good choice and curative in situations like your husbands. Many UCSF docs are highly experienced in HDR Brachy; ask who is handling his procedure and check out their credentials. Chances are that will make you feel much better about his choice.

Again, we understand your concerns -- we have been there. We have many men on this forum who have had their cancer cured by radiation treatments including HDR Brachytherapy.

Please continue to ask any and all questions and we will try to help. But my main message to you is that appears your husband has made a reasonable choice and one that is likely to have great results. You are at a world class medical institution with highly trained specialists.

Jim

P.S. Here is a primer on radiation at UCSF: https://urology.ucsf.edu/sites/urology.ucsf.edu/files/uploaded-files/attachments/sduro0110_radiation_therapy_for_prostate_cancer_a_patient_guide.pdf
Posted 5/1/2022 4:04 PM (GMT 0)
"Now I just learned from reading that surgery can’t be a second option"

this is what you need to understand: if BT doesn't work most likely neither would surgery and radiation. BT treats an area similar to surgery and SRT. i'd go with BT. with the information you've provided BT seems like the best choice but please refer to my signature because i do have a bias. good luck to you and welcome! ask plenty of questions
Posted 5/1/2022 4:21 PM (GMT 0)
ConfW - You should be in pretty good hands at UCSF and the treatment proposed is reasonable as JNF and Tudpock noted as veterans of brachytherapy. Your husband is pretty young so getting this done now and moving on is a good idea. If Active Surveillance was considered, it would probably just kick the can down the road and require treatment in a couple of years based on current pathology after worrying about it during that time. Early detection and treatment yields the best results. The second opinion is up to him if is not comfortable with UCSF's assessment.
Posted 5/1/2022 4:47 PM (GMT 0)
I'm sorry, I missed the reference to UCSF. You'll be in good hands there.

If they are recommending HDR Brachy, then you can be assured they know what they are doing, and why. The ONLY (minor) downside to HDR is really two parts: You won't have a whole gland pathology report, to make a clear statement about what was, and was not there, and it can take a while--up to a year or even 2 years--to have his PSA get to it's lowest point (called nadir). His PSA, unless he also has ADT (hormone therapy), will not achieve undetectable.

Again, the good news is better: HDR will work, and work well for cancer control with minimal side effects. The possibility of intraductal cells is a concern..intraductal PC is a strange beast--but the docs at UCSF are some of the best around, so rest easy.
Posted 5/1/2022 5:04 PM (GMT 0)
If primary surgery or radiation fails the next best option would be different radiation treatment or ADT or a combination of those two (ADT =androgen deprivation therapy)
I think statistically there is a higher chance for permanent side effects from surgery nowadays since the radiation type treatments have increased in safety and accuracy with technology over the years.
Get second opinions and keep asking questions until you are comfortable with your decision.
Any urologist that presents the “can’t have surgery later” argument, cross them off the list.
It’s only my personal experience but the brachy portion of my treatment was fairly easy to get through, but I had LDR almost 10 years ago
Posted 5/1/2022 5:28 PM (GMT 0)
Yes, it would be better if your husband confirmed his diagnosis with a second opinion on the biopsy slides done by Dr. Espstein at JHU. You still have time to do that and leave the appointment for the HDR Brachy.[code]

@Tudpock18, thank you for your reply. How long would it take for the turn around time for getting Espstein’s second opinion, do you or anyone knows? Thanks for the UCSF radiation guide, it is very helpful. From Pcf.org pamphlet, it states that SBRT is more common than BT because it is less invasive. It now appears that SBRT will affect other organs, healthy cells in patients then BT as BT is focus on the prostate, am I correct? If BT is the option, would LDR be better than HDR other than the fact that LDR requires more treatments because I thought lower radiation would be better ?

Post Edited (ConfW) : 5/1/2022 11:40:36 AM (GMT-6)

Posted 5/1/2022 5:35 PM (GMT 0)
“ The ONLY (minor) downside to HDR is really two parts: You won't have a whole gland pathology report, to make a clear statement about what was, and was not there, and it can take a while--up to a year or even 2 years--to have his PSA get to it's lowest point (called nadir). His PSA, unless he also has ADT (hormone therapy), will not achieve undetectable.”

@halbert, Thanks so much for your reply. I don’t understand the above statements. should my husband be prescribed ADT prior to his Brachytherapy treatment to completely end the cancer?

Post Edited (ConfW) : 5/1/2022 11:42:52 AM (GMT-6)

Posted 5/1/2022 7:19 PM (GMT 0)
ConfW - The time is not so much with Dr. Epstein’s group but the whole process of getting the slides to them then their analysis, a few steps in the process:
https://pathology.jhu.edu/patient-care/second-opinions/send
I had a delay as mine got caught up in the Christmas holidays but most say a few weeks.

Lots of doctors perform surgical and beam radiation treatments so the easiest to arrange and get done. Most modern radiation equipment can do SBRT as well as the Cyberknife equipment so it is getting pretty easy to arrange now.

LD Brachytherapy has been around for a long time so quite a few doctors perform those treatments.
HD Brachytherapy is not performed by as many doctors (UCSF does) so it is not an option as often for many men.

My Dad is 94 and had LD Brachytherapy and a fair number of urinary issues over the years since which would lead me to prefer HD Brachytherapy as nothing is left in your system when completed. Of course, there are good and bad stories for every treatment type so your mileage may vary as they say.
Posted 5/1/2022 7:23 PM (GMT 0)
"@halbert, Thanks so much for your reply. I don’t understand the above statements. should my husband be prescribed ADT prior to his Brachytherapy treatment to completely end the cancer?"

that's a treatment decision made by the doctor based on risk. i received ADT before radiation(s) but i also had two forms of radiation because i was high risk. the kitchen sink approach worked in my case with minimal side effects
Posted 5/1/2022 7:30 PM (GMT 0)
ConfW... I always recommend no matter what treatment you choose; always seek our the best practitioner and team you can find. UCSF has the reputation of being one of the very best. Both HDBT and SBRT are excellent options for low and intermediate risk guys. The side effects for both are generally mild and short term and both treatments offer very high success rates. Both treatments also are safe and very convenient. I had trouble choosing between them and selected SBRT because I could not find a local practitioner doing HDBRT. Good luck and wishing you and your husband a very successful outcome. Terry
Posted 5/1/2022 7:48 PM (GMT 0)

ConfW said...


@Tudpock18, thank you for your reply. How long would it take for the turn around time for getting Espstein’s second opinion, do you or anyone knows? Thanks for the UCSF radiation guide, it is very helpful. From Pcf.org pamphlet, it states that SBRT is more common than BT because it is less invasive. It now appears that SBRT will affect other organs, healthy cells in patients then BT as BT is focus on the prostate, am I correct? If BT is the option, would LDR be better than HDR other than the fact that LDR requires more treatments because I thought lower radiation would be better ?

ConfW, you can call JHU to see their current turnaround time on second biopsy opinions. My understanding of their normal practice is that it's within a couple of weeks w/o any holiday interruptions. SBRT, HDR Brachy and LDR Brachy are unlikely to impact any other organs as the prostate is the focus of the treatment. Each is intended to provide enough directed radiation to kill the cancer w/o causing damage to other parts of the body. With SBRT there is no "insertion" of anything other than radiation passing into the prostate. With HDR Brachy, a radiation source is temporarily inserted directly into the prostate and then removed. With LDR Brachy, the radiation source is inserted via permanent seeds from which the radiation emits and kills the cancer. The radiation itself dissipates from the seeds over a few months so ultimately there is no permanent radiation left in the body.

I may have misunderstood your comment but LDR does not require more treatments -- in fact it requires the least number of treatments - one (in addition to the required volume and seed placement study). But the fact is that any of these three radiation treatments is highly likely to cure hubby based on what you have told us about his diagnosis. UCSF is highly skilled at HDR Brachy so that is probably more what they suggest. I'm sure you could find LDR and SBRT practitioners in the greater Bay area if you look and if it gives you and your husband more peace of mind to view more options then that's a good approach.

Jim
Posted 5/1/2022 9:08 PM (GMT 0)
Thanks so much for everyone advices. Everyone advices and past experiences are so helpful and I appreciate it very much. I wish I had joined this forum earlier and it would have calmed my nerves. No one wants to hear the C word and this year has been tough for our family as my husband’s father passed away from Covid 3 week before this bad news. It’s so upsetting when he doesn’t have PCa on both sides of his family.

@Tudpock18, I thought LDR Brachy requires more visits because it is low doses of radiation. After my husband decides on radiation, his doctor suggested HDR Brachy. He will have a phone call with his radiation oncologist this coming Wednesday so he will ask more questions and I have made notes of questions from other posts on this forum for him to ask.

@Mumbo, wow..your father is 94! My husband’s father made it to 95 but passed almost 3 months later. about dr. Epstein, we will check with John Hopkins tomorrow. Should we decided with HDR Brachy appt, there won’t be enough time. Correct me if I am wrong, perhaps HDR Brachy is more advanced than SBRT and as you have mentioned, not many cancer facilities have it available. I can understand my husband’s anxious to get treated quickly as no one wants to walk around knowing that they have the cancer cells in their bodies.

To everyone that has contributed to this post, Thanks so much again. Any other suggestions/advices from someone else who has walked the same paths before, I would love to receiving them. Thank you.

Post Edited (ConfW) : 5/1/2022 3:54:07 PM (GMT-6)

Posted 5/1/2022 11:39 PM (GMT 0)
95 next month…

When you are in the middle of the PCa mess and the “get it out” mentality is strong, it is difficult to remember that prostate cancer grows quite slowly and there is rarely a rush to do anything. He and you should take your time to collect your thoughts and not try to push the decision beyond your comfort level. You can easily change appointments.

It is really not a matter of a therapy being “more advanced” if that even could be determined. Robot assisted surgery and modern beam radiation is some pretty advanced stuff. You are just trying to make a decision that works and you will not have regrets about later. I think HDR Brachy is one or two appointments whereas SBRT is usually 5 treatments but those are questions for the RO. Both get it over pretty quickly compared to alternatives.
Posted 5/2/2022 12:28 AM (GMT 0)
ConfW.

WOW the great outpouring of concern and advice. HW at its best. Welcome to the family. Thanks to all that are helping. Please give your husband a big hug from all of us.

Sorry I did not respond earlier as I spent nine hours in the car today returning from our spring meet of GFMPH in Baton Rouge. Another remarkable meeting of fellow PCa men of all stages and treatments and their wonderful partners providing support and information and most of all fun. We missed you Hal and Pat!

As many have said, being at UCSF is the greatest thing. A world renowned Center of Excellence particularly in PCa. Just close your eyes and accept what they do……..none better. Relax and be comfortable. You are in excellent hands.

Why HDR and not other treatments? Brachytherapy is radiation from within. IMRT/IGRT and SBRT are all external beam radiation. The radiation passes through the body to focus on the prostate. Very effective, but radiates healthy tissue that is not cancer. HDR brachytherapy does not pass through the body. It only radiates the prostate and tissue that is cancerous, and does not radiate healthy tissue to get to the prostate. It is simply the most conformal treatment to the cancer and prostate of all other treatments including surgery. UCSF does HDR rather than permanent seeds because it is more modern technology. Andy Grove, founder of Intel used HDR as it was most technically advanced PCa treatment. My medical oncologist said “permanent seeds are so last century…HDR is 21st century”.

As for secondary radiation induced cancer, I challenge anyone to find one documented instance from HDR brachytherapy induced secondary cancer. The most definitive study from Sweden tracked 393 men for 15 years following external beam radiation and found that 0.30% suspected, not proven, secondary cancer. 1 in 300 at 15 years suspected. If such a study was conducted with HDR…..But no one would fund such a study because they know they would not find any. Secondary radiation induced cancer from brachytherapy just doesn’t happen. Don’t worry about it. The oncologists at UCSF use brachytherapy and other radiation treatment for childhood cancers with no concern about radiation induced cancers. Just ask them.

You are on a great track. Most likely for his risk profile it will be one outpatient procedure and there is essentially no recovery issues, maybe a little urinary burning for a couple of days and a tender bum. I went to work the next day just fine. For a week just don’t sit on a hard chair as there may be some tenderness. No restrictions, no cutting, no catheter overnight for most (mine was removed before I left the center) and no radiation left in the body. For an excellent information source see www.cetmc.com. This is the website of Dr. Jeffrey Demanes, the father of HDR for PCa and many other cancers. He retired a few years ago as the head of radiation at UCLA Medical Center and many of the UCSF oncologists were trained by him. His website has not updated results since his retirement but it is an excellent source to learn about HDR.

You are getting great support and please relax……breathe……all will be fine. You found it early….there are great treatments….and it does not have to be life altering. Learn, and ask, and challenge. We are here to help you and we all have a lot more experience at being treated for PCa than any doctor.

For me, if you would like to learn more of my specific experience please click on my user name and you will find my email. Let me know how I can help.

Best Wishes,
Jack
Posted 5/2/2022 1:06 AM (GMT 0)
The 'downside' I mentioned isn't really a downside, once you understand some basic things about PC, to summarize:

PC is generally slow growing. In all probability he has had it in there for a long time already--years. So, while it is important to get treated, it's not like something like colon cancer, where you go from a hot biopsy to surgery in a few days.

PSA, and this is really important, is not really a cancer test. PSA is a test of prostate activity. Lots of things can elevate PSA, so this is why we start monitoring it at a relatively young age, and watch it over time. Infections, sexual activity, riding a bike, many other things can cause elevated PSA. Because of this, Radiation therapy doesn't drive PSA to zero--he still has a prostate, some some PSA is there for life. The RT will destroy the cancer, no issue there. He will be getting regular PSA tests--every 3 months is common--for several years. It will drop steadily, after a year it may 'bounce' up, and then go down further. That's common. It will reach a low value that will stabilize over time, that is his nadir, and that is the number to track forever more.

As others have said, he's at a world class institution, who is really good at this treatment protocol. Trust them. Trust the process. He's going to be around for a long time to come.
Posted 5/2/2022 8:43 PM (GMT 0)
@JNF, thanks so much for your uplifting message, this HW community is so welcoming and wonderful. Your successful treatment has given me hope and your explanation on Brachy is very helpful. However it appears that the majority of people on HW have had RALP and other treatments. At this point, I know that AS is not an option. I just want to delay the appointment so we can think more about other treatments and/or getting another second opinion from Epstein but I don’t think I can change my husband minds. The more I read about prostate cancer, the more I am sad and scared. We live near Stanford but we chose UCSF because its ranking is higher but we don’t know who is the best radiation oncologist at UCSF. My husband’s doctor has excellent credentials but we will need to find out more about his numbers as well his successful treatments experience and hope we will know more about them this week. Thanks so much again.

Post Edited (ConfW) : 5/3/2022 11:02:46 AM (GMT-6)

Posted 5/2/2022 11:39 PM (GMT 0)
Hello, I'm coming to this thread a bit late. The general thinking here is that guys that are diagnosed should check out all their options to make an informed treatment decision. At the same time, based on my time participating here, I've also seen that some guys just naturally gravitate towards surgery and others to radiation. It seems like your husband falls into the radiation camp based on his preferences. And of the types of radiation, HDR brachy can be pretty effective with minimal side effects.

Regarding the second opinion from Epstein, even if you know you're going to treat (you've said AS is out) I think the info is still helpful. If Epstein upgrades your husband's diagnosis (unlikely, but possible), the radiation oncologist might also recommend a short treatment of ADT in conjunction with his brachy. It will be good info for you to know.

If your husband goes ahead with HDR brachy from a top notch cancer center, he is very likely to quite well and have minimal lasting SEs. (It certainly seems to have done the trick for me...)
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