I have read and heard conflicting schools
Of thoughts on how to deal with primary tumors in MPC. My husband has an enlarged prostate, which has off and on been symptomatic (more so since biopsy)
I’m thinking after reading here about complications of it being left (urine retention/ cancer cell shedding) why not beg a Dr to remove it?
Dr Frank at Mayo says he would only consider removing prostate (in Husband case) for palliative purposes.
Any thoughts on this are much appreciated!
The NCCN guidelines have changed this year, they now recommend radiation when there are mets. The STAMPEDE trial showed that this is beneficial.
So your RO, provided he heard of this change, should be willing to treat your husband. Most will agree to radiate the lymph nodes as well.
Here is a screenshot of the sections in the NCCN guidelines:
pbs.twimg.com/media/D2JzsIG...
pbs.twimg.com/media/D2J1zLy...
Thank you GP24.
Currently his prostate is too large for radiation. So I’m wondering if we push for surgery?
In this study they found that surgery makes no difference.
ncbi.nlm.nih.gov/pubmed/304...
But this is not recommended in the guidelines. If I were you, I would ask Dr. Frank for an "early palliative" surgery 
It should include an extended lymph node dissection to get rid of some of the affected lymph node mets. But I cannot convince your doctor from here.
From what little knowledge I have on the subject, having the prostate taken out seems to be a very bad idea, and will make things worse. If you can get some effective treatments going, the prostate will shrink a lot in size, and may even get to a point where the cancer there is just about gone. Assume you need to stop it spreading by doing a 180 degree turn away from what caused it. Find this out fast! See diet fixes and helps. Zero sugar immediately. IVC and low dose Xtandi together is benign and can kill 90% of the cancer in a few weeks, so worth a try to see if it works for you. If it does, you will buy a year or two to put a long term strategy in place and have a good chance to live normally. The knife, chemo, and radiation are way down the list of things to try first. Good luck to you both.
Greeting DavidWealth.... oops Health... I see that this is your first post here. Would you please be kind enough to give us some information concerning you and your fight against the dirty little bastards. All info is voluntary but it helps us help you and helps us too. If you should reply please do so on a future date and NOT to me. Thank you.
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 06/22/2019 6:54 PM DST
My prostate was stage #4 T-4 .which meant that pc breached the walls and spread . No surgery . RT and double adt put me in a clear status .Once your treatment is decided he should improve . All treatments take a toll . My prostate was huge also . Maybe shrinking it down with adt then RT . He will take some hits . But it’s possible to live with APC for many years . Mayo should guide you correctly . He can get to a better place .. Pray for a knock out in the first .. round ... This castration technique diminishes a man . He can endure .. love each other ..it’s a bumpy trail ,but we are all on it together .. you can find help here .. Good Luck .. Scott🌵
There really aren't any "conflicting schools" after two major RCTs were reported:
pcnrv.blogspot.com/2018/09/...
"I’m thinking after reading here about complications of it being left (urine retention/ cancer cell shedding) why not beg a Dr to remove it?"
As for prophylactic removal, that is a terrible idea if there is no oncological benefit. You are trading urinary retention - which can be controlled by a TURP (or similar)- for urinary incontinence - which is sure to make his life even more miserable.
Hi Tall_Allen
I read what you sent me and am I
Understanding correctly, that
If we can get radiation to prostate (currently not an option due to size) we should
Or, if radiation is not an option, go for surgery?
This what we are thinking but we have to find a willing surgeon.
My husband is 6ft 7inches. But his name is not Allen. 😊 thank you for your wisdom!
If he has less than 4 mets. There is no size limit for IMRT (if <100ml) of HDR brachy, only LDR brachy. Surgery has incontinence as a potential side effect.
That’s what I thought? I did I RT and my prostate was giant ..
I'm not as knowledgeable as your Mayo Clinic doctor, or as Tall_Allen, so what follows is only my current inexpert understanding of the issues. Bearing that in mind, I think I myself would be very cautious of convincing a doctor to perform surgery.
My interpretation of Tall_Allen's blog post and GP24's second NCCN image (pbs.twimg.com...) is that there is some benefit to prostate radiation therapy (RT) or radical prostatectomy (RP) for men with metastatic prostate cancer ONLY if they have very few metastases. If a patient has only a few metastases ("oligometastatic") and especially only if they're in the lymph nodes, then they might benefit from RT or RP. However if they have more widespread metastases then there is no benefit, only the additional side effects of RT or RP. In other words, RT or RP is more likely to make things worse than better. RP is major surgery. It's not like getting a tooth extracted or a skin lesion removed. It can take at least a month for full recovery, and maybe more. It will very likely produce some degree of urinary incontinence and erectile dysfunction. If it doesn't help, it won't be worth doing.
You might be able to get a doctor to perform an RP but, if RP has not helped men like your husband in the big clinical trials, I wouldn't trust him as a doctor. He either hasn't read (or hasn't understood) the results of these important trials or doesn't care what the trials reported and is willing to do whatever you want for money.
I understand how difficult all of this is for you. It's very hard to watch a loved one suffering with cancer without feeling that you have to do something. If you decide that you do want to explore the options further and get a second opinion from another doctor, try to find a doctor who is a real specialist in prostate treatment. Find someone who keeps up with the latest research (as Mayo Clinic doctors would be expected to do.) Find someone trustworthy, then listen to him. Don't beg him to do something that he thinks is a mistake. It won't help you to do something that doesn't help and may in fact make you feel worse about the whole thing later.
Best of luck.
Alan
Hi. Reading through your postings, I think Dr. Frank is making the right call. He is a prostate cancer specialist (surgeon).
I am all for hitting the tumors hard as early as possible, but your hubby does have other options.
Incidentally, (since you live in MN), I use Dr. E. Kwon as my primary "cancer manager" (Mayo Rochester). He is a urologist but specializes in prostate cancer. He thinks outside the box in ways to formulate the best order of treatments in each specific patient - based on how they respond.
Some folks use a MO (Medical Oncologist) as a primary manager. Whatever works for you.
There is so much good info on this forum, so keep asking away.
Your hubby still has many good years to live, so plenty of time to make informed decisions.
Don't rush into anything. The Firmagon puts the tumors "on hold" - and gives you time to think about all options.
All the best for the journey ahead.
Firmagon was my first shot . It can knock pc back . It can knock ’ him around also . But it works well . He needs to cut his testosterone off..
rising PSA and 'light' advancement of mets in hip bones. Diagnosed stage 4 in March 2021.
Does anyone have any thoughts on an alternative to radiation to the spine (2nd time around)? 
Lutetium 177/Actinium 255 treatment in Germany
Looking for help
ADT Holiday?
