Appt with Igor Frank tomorrow at Mayo

[Dachshundlove]

My husband has managed to get an appointment with Igor Frank at Mayo Clinic tomorrow morning.

Dr. Frank is a surgeon. My husband is Gleason 8, with evidence of left illiac lymph node involvement. Internal illiac mainly.

So far we have not been told surgery will be an option and I’ve read conflicting information about the benefits of surgery in his situation.

He has had 1 shot of firmagon (3 weeks ago) and we are going for a PSMA scan at UCLA on 24th.

Any thoughts on what we should be asking Dr. Frank.

We are still trying to figure out a path forward and not sure what our options will be.

Thank you all for your support— this community and the support it provides has saved my sanity in this early part of our struggle.

I’d like to echo Schaw’s sentiment, as I too feel a connection here that goes well beyond text and a screen. Healing and light to all of you.

[Tall_Allen]

While you're at UCLA, make an appointment to see Chris King (office in Santa Monica)

[Dachshundlove in reply to Tall_Allen]

Will do. As always, Thank you for the tip!

[jfoesq]

It was considered "outside the standard of care" 7 yrs ago, when my doctor recommended removal of my prostate along with the removal of more than 30 lymph nodes for treatment of my Gleason 9, metastatic PC (4 mets). I was 54 yrs.old, otherwise healthy and I wanted to be as aggressive as possible with my treatment, so I had the surgery, despite the fact that 2 other prominent docs were shocked at the thought of the procedure for someone with advanced PC. You can google info on PC treatment and I think you will find that surgery for metastatic PC has become more popular since then, although I don't think it is presently considered the standard of care (SOC). Be mindful, the risks of incontinence and erectile function, along with other risks, must be considered....Fortunately, my incontinence was mild and lasted only 1-2 weeks, and I did not suffer erectile dysfunction (although, I am not sure that would have been such a blow, since my sex drive has been reduced to zero from the Lupron treatment.

IFFFF he decides to have any type of surgery, he should make sure the surgeon is very experienced with this type of surgery. I had 2 surgeons- one did the prostate, the 2nd did the lymph node removal.

All the best

[Dachshundlove in reply to jfoesq]

Hi Jfoesq:

Where did you have surgery? Do you believe surgery slowed down your cancer?

Intuitively it seems to make sense to remove primary tumors if possible.

I appreciate your response. This disease is a nightmare. I woke up depressed about it this morning and then saw some responses from the wonderful people here and it gave me a lift. 😊

[jfoesq in reply to Dachshundlove]

I am treated at MSKCC. I have no idea if the surgery helped, but I knew it might, and I weighed the upside (living longer) versus the downside risks associated with it. I was 54 yrs old, married with 3 youngish kids and when balancing the risks, I decided the risks were worth it for me. Everyone is different and has to make the best decision they can for themselves, with the info they have acquired.

[Blount]

I don’t have the expertise to answer your questions about what to ask Dr. Frank,

However in 2016 he performed a RP on me. I have confidence in him. He surrounds himself with the Mayo prostate cancer doctors and is open to their opinions. I would ask him if that is how he intends to handle your case. Best of luck to you.

[Dachshundlove in reply to Blount]

Thank you—he seemed exceptionally compentent to us. Husband and I both liked him a lot.

[j-o-h-n]

Just ask how many RPD he has performed, the old way and the new way? Also make sure he doesn't have a fight with his wife that day and no road rage either. If all goes well he will be out in a day, hoping to get rid of his Foley.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 06/11/2019 5:43 PM DST

[Dachshundlove]

He’s done many robotic surgeries but surgery is off the table for us now, due to the appearent extent of lymph invasion. Sadly. We are not in charge of the master plan. And I’ll double check that the treating MO is in a good place mentally— Thanks for the tip!

[ImaSurvivor1]

Well, who IS in charge of the master plan? Other than God, you MUST be in charge of the master plan IMO. I have a friend in my support group who had 50 lymph nodes removed. I'm certainly not a surgeon or doctor, and I don't know if you husband's cancer was anything like my friend's, but do you need to be so quick to rule out surgery? Why not get a second opinion about surgery? It may be worth exploring targeted therapies if they know where the metastases are. Again, I'm not a doctor, but I've often heard doctors and patients say that the quickest way to make your cancer castration resistant (and so much more complicated to treat) is to start on an extended course of ADT. Good luck and best wishes.

[Dachshundlove]

Dr Frank was the 2nd surgery opinion. I’m thinking we need a 3rd. Frank’s opinion was surgery wouldn’t cure him, the lymph invasion appears beyond the pelvis. And, we are doing psma scan in hopes of having a better look at how far it has spread.

I can’t say my husband is interested in surgery, but every Dr in our family says the same thing, find somebody to remove as much of the cancer as possible.

If you don’t mind me asking, what is your stage and what have you done?

Thank you for sharing— Dachshundlove

[Grumpyswife]

Dr Frank told my husband to get his affairs in order as death was not far off. That was 14 years ago. We never went back to him.