Radiation Oncologist's Treatment Recommendation

[DalTx]

I have now met with my urologist and a radiation oncologist. My urologist had not reviewed the radiology reports or disc images that were done 3 weeks prior to our meeting. He asked me if I had the tests done and then quickly looked at them during our televisit. Never has seen the MRI images. He completely dismissed the radiology report that said I have an extra capsular extension and cancer has invaded a seminal vesicle. The majority of that 10-15 minute visit was spent talking me out of an oncologist consultation.

The oncologist reviewed everything prior to our televisit and took 2 hours to very clearly explain everything to me. He was kind and answered almost every question I had before he was even finished with his explanation. He took time afterward to answer additional questions. I never once felt like he was rushing. He is recommending 8 weeks of EBRT and 2 years of ADT, according to the National Comprehensive Cancer Network, NCCN.org, guidelines. PSA 28.86, 4+3 in 4 out of 12 cores- 2 with 3+4, extracapsular extension and invasion of right seminal vesicle. He said the tumor is trying to attach itself to a nerve?, and when it does, it will metastasize. He advised to take a couple weeks to absorb the info, get a second opinion if I choose, but I am high risk prostate cancer,7.5 out of 10, and not to delay.

I do plan to get a second opinion.

I am concerned about the side effects of both, but mostly the 2 years of ADT, after reading how some people react to it. In addition to a demanding job, I care for my 62yo autistic older brother. He is far more work than I ever imagined and I'm exhausted by afternoon. What is it going to be like when treatment begins? I'm afraid I won't be able to manage both. I don't want to begin treatments until I can make other arrangements for my brother, which has been very difficult and time consuming.

Thank you for any help/advice/opinions you care to share.

[Tall_Allen]

Was that Neil Desai at UTSW? He may be referring to perineural invasion, if it was identified on your biopsy report.

Certain kinds of radiation have the best record of success in cases like yours.

Discuss with him the following clinical trial:

clinicaltrials.gov/ct2/show...

The "tried-and-true" best therapy for a high risk case like yours is external beam whole pelvic radiation with a brachytherapy boost to the prostate and 12 months of ADT. Without the brachytherapy boost, you will need 28 months of ADT. The clinical trial above uses Decipher to decide if you can do as well with less ADT or require a second line hormone therapy. These are all options worth considering.

[Terp2017 in reply to Tall_Allen]

Tall Allen, I am amazed at how much you know.

[DalTx in reply to Tall_Allen]

Thanks Tall. It was not Neil Desai, he does not accept my insurance. I wouldn't mind a second opinion from him. Any idea what the cost would be? Thank you for the information about the study. They don't have a TX location but I will ask him about the treatment.

[Tall_Allen in reply to DalTx]

Sorry to hear about your insurance. I don't know the cost, but if you can afford it, he is well worth talking to. You can use my name - he may remember me. He would certainly know about that trial - in fact, I wouldn't be surprised if UTSW became a treatment site.

[DalTx in reply to Tall_Allen]

I will call his office tomorrow and see what they say. I have a backup but know nothing other than reviews I've read online. I would be nice to see someone with such a good recommendation.

[DalTx in reply to Tall_Allen]

I did find the perineural invasion on the biopsy report. My urologist has never mentioned it to me. I read a little about PI this morning and now I'm more concerned than before. My radiation oncologist spoke of it but did not use the medical term.

[Tall_Allen in reply to DalTx]

prostatecancer.news/2018/03...

[DalTx in reply to Tall_Allen]

Thanks again Tall. I have been reading up on PNI since you called my attention to it.

[DalTx in reply to Tall_Allen]

I'm not having much luck getting a second opinion, thanks to recent weather and my schedule. I've talked with another man further along in treatment who suggested I not spend a lot of time seeking another opinion due to the PNI, the pretty clear treatment options for my diagnosis, and my doctor seems top notch. My oncologist wants to have another televisit to discuss my additional questions and the treatment you brought to my attention. I received the biopsy results 12/6 and MRI results 12/30, how long can I safely put off treatment?

[Tall_Allen in reply to DalTx]

Since you will be having radiation, you can get a Lupron shot now. That will halt all further progression for the time being.

[DalTx in reply to Tall_Allen]

I received a VM last Wednesday morning the doctor wanted to schedule a second televisit after he received my follow up questions and the study info you provided. I responded that afternoon but no one has responded to any of my messages since. I've made it very clear how impressed I am with the oncologist and his staff, the could not have been nicer or more engaged. I don't understand why they have not been back in touch and now feeling discouraged.

[DalTx in reply to Tall_Allen]

Good news. I finally heard back from UTSW and now waiting for Dr. Desai's office to schedule a televisit. It will cost be about $300 out of pocket but I think it's worth it.

[Tall_Allen in reply to DalTx]

Good timing. They just restarted his clinical trial, and UTSW will be a treatment site. That means you should be able to get in on the trial.

[DalTx in reply to Tall_Allen]

I have new insurance this year and I'm happy to report Dr. Desai is my new RO and I w meet my new MO tomorrow morning. I like Desai very much and appreciate you referring him to me. He said he he amazed by your knowledge of prostate cancer. I have been extremely pleased with UTSW so far and do not expect that to change. It's a huge improvement from where I was going, even though I did like my doctors. Thank you for all your help.

[EdinBmore]

Sorry you got the reaction you did from the uro. As Tall says, to a uro everything is about surgery. He's also a strong proponent of radiation vs. surgery for gay men. For whatever it's worth, I agree completely.

Get a second opinion or two. Watch videos. Read as much as you can and prepare yourself psychologically for what is going to happen. This is a big fucking deal and it will change your life. I knew that intellectually but not so much emotionally. Hopefully, your experience with ADT will be tolerable (mine wasn't). FYI: 25 IMRT, brachy boost, and 10 mos of ADT here. So far, after 3 yrs, PSA is stable at 0.02.

Good luck to you. Don't hesitate to ask questions and seek support for the guys here.

EdinBaltimore

[DalTx in reply to EdinBmore]

Thank you Edin. I have been reading, and watching a lot of videos over the past four months, including many of the excellent videos posted from the recent conference Darryl has posted. It paid off because I clearly understood everything the oncologist was telling me about my particular situation.

What no one can tell me is how ADT will affect me personally, but it helps to hear from others about their experiences. All I can do is prepare myself as best I can.

[EdinBmore]

You're right re ADT. No one can tell you how your body will respond to it. The only thing that was of any benefit to me was exercise and I am hardly a gym rat. But, I forced myself to go 6 days a wk. Hired a trainer. Did the best I could with it. Although I doubt it did much for me physically (wt gain, joint pain, genital shrinkage, etc.), it DID help psychologically. I felt more in control and in better spirits (major depression, despair and suicidal ideation). Unfortunately, the pandemic took care of my work out routine.

Sounds like you're doing a great job of psy prep. Good for you! I found "Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones" to be very helpful and it includes info for gay men.

EdinBaltimore

[DalTx in reply to EdinBmore]

Great advice. I was talking with someone yesterday in a similar situation who had the same advice about exercising. I've not been to the gym in over 2 years thanks to a couple car accidents and Covid. I worked out 3-4 days a week before all that and fear how ADT will reshape my body and mind if I don't get back in the gym. I just recovered from Covid and I'm boosted, so I think I'll go during off hours. The book sounds like a great recommendation and will look into it. Thank you so much for the information, I hope you get relief from your side effects soon.

[EdinBmore]

You go, boy!

FYI: last Lupron injection was in May 2019; in theory, the side effects were supposed to have begun to dissipate by Aug/Sept 2019. I wasn't fully clear of them until 14-16 mos later; apparently, this is unusual. Most guys report 12 mos. And, btw, some side effects - such as wt gain and genital shrinkage, etc. - are my new normal. I hope better outcomes for you.

[DalTx in reply to EdinBmore]

I'm sorry to hear it took so long to clear your system and the side effects have been bad. Sounds like I'll be dealing with this a while myself.

[cdcfbw in reply to DalTx]

From what I've read, it takes as long to get back to normal as you are on it. I was on for 6mo. and hopefully will see some relief by April of this year (1 full yr.). I started walking and doing some light weightlifting at home to try and compensate. I also put myself on a 1385 cal. a day diet to get rid of some weight I already had and have lost 20lbs. and will continue as long as I'm under the control of Lupron. I say to myself I will never go on Lupron again but who knows what the future holds, my #'s are good now, PSA at <0.04 but my T was at 8 the last test I took a couple of months ago. I can't wait to see if my T level will return to where it was (385). My symptoms were mild hot flashes, depression, crying spells, body aches & pains in strange places, no libido-sex (for a year now), fatigue. Did I mention no sex for a year....also brain fog. Maybe you won't have all the SE but one just never knows. Best of luck to you. 😄

[DalTx in reply to cdcfbw]

I am reviewing my messages from the beginning and somehow never responded to yours. Sorry about that. I hope you are doing better. I am experiencing all the same SE you mentioned. In fact, I had to stop working., I never know how I'm going to feel from one minute to the next, even after almost 2 years. Unfortunately, my cancer had already metascized and they think I will be on this for the rest of my life. I have good and bad days, and the bad can get really bad. But, I try to make the most of my good days and still enjoy sone great times with friends whenever possible.

[EdinBmore]

Oh...forgot to mention and you may not hear anything from docs about this...it may be worthwhile to use a penis pump during your treatment. To make a long story short: I participated in a study at U of MN (was advertised here, btw). It concerned gay men with prostate cancer and provided a lot of info, meds, and support. One feature of the study concerned the use of a penis pump to maintain the size and function of one's genitals; particularly for those men who had ADT. Bottom line: the study provided and recommended a pump manufactured by NuPath; I think it's available from Amazon (isn't everything?) The difficulty with it is that ADT reduces one's interest in sex to ZERO and so it was difficult to follow a routine but, like exercise, it's important (just do it. LOL)

EdinBaltimore

[DalTx in reply to EdinBmore]

Thank you Edin. Very important information!!

[Ram17]

I would change the urologist immediately.

5 years ago I was diagnosed with Stage 2 prostate cancer. I opted for the surgical route which I still think was the right choice for me. My PSA numbers never zeroed out. My urologist kept saying he didn't know why. We tried finesteride for a while to no avail. We did another surgery a year after that to remove more lymph nodes. It didn't work. He put me on bicalutimide which he called chemotherapy. 85% of the world calls it hormone therapy. I had refused hormone therapy knowing that it would cripple me. Well it did.

3 years after the initial surgery I was reading my pathology report and saw perineal invasion on the report. If I had known that earlier I would have gone with a salvage radiation treatment. My doctor never saw it on the report. I feel he was like your urologist who doesn't look until he walks into the appointment.

I am no longer seeing him. I have pretty much lost all faith in the medical profession.

If you'd like to talk to somebody about the surgery and what it's like, feel free to message me. I live in the Austin area. Maybe we can set up a call one evening.

YouTube a guy named Jimmy Charles. Look for his songs "Superman", "We Are Warriors"and "You Are Not Alone". Jimmy does a lot of work with various cancer groups and is a great person.

Good luck.

[DalTx in reply to Ram17]

Thank you Ram. I quit seeing that urologist after our last televisit. I would probably be in a similar situation as you had I not done so. It was obvious he and his staff had no genuine concern for my health. Fortunately, my prostate will not be removed.

I'm sorry you had such a bad experience with your urologist, and understand why you have lost faith in the medical community. I was very impressed with the oncologist I met with 2 weeks ago, and his new patient coordinator. The doctor wanted to set up a second televisit to respond to my follow up questions and discuss the treatment Tall Allen suggested, but no none has returned my messages since last Wednesday. I don't know what to think and I'm very discouraged. Now I'm more worried about the doctors than hormone treatment.

I hope you're feeling better and your situation has improved.