Ok, should I request the removal of my prostate even though my doctors are saying that there is no point in doing so since it’s metastasis to my lymph nodes?
Prostate surgery question : Ok, should... - Advanced Prostate...
Prostate surgery question
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Doug47
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Whole pelvic radiation gets both.
Ok
I did the whole pelvic radiation for 35 days , they said it does the trick and hits the lymph nodes That are in that region too. But surgery was not an option for me, removing the prostate was not going to get it all - so they nuked it with Radiation; seems to have worked good for me and no surgery- but again it was not an option for me (spread beyond the prostate).
At 47 years old I would caution radiation. It's a one and done treatment and will make any further treatment difficult due to scarring. Also surgery will give you the benefit of an accurate pathology report. Side effects from radiation are not generally seen up front and it is down the road where they can show up. It is of vital importance you choose the right surgeon and to minimize any side effects if you go that route. There are different opinions on this and I went with prostate removal from the advice of some very well versed specialists. Either way you choose go see a specialist and get their opinion first. I am also an advocate of early chemo up front. In my case it cleaned up almost all the cancer even before surgery. It gets to places other treatments can't including lymph avenues and possibly anything scans will not detect.
I am in a similar situation (age 49, locally advanced Gleason 5+4, lymph node involvement). I’m am heading to UCLA for a PSMA scan to see if there is evidence of distant (non local) Mets.
In either case, my oncologist (who is one of the most respected in Canada), thinks removing my prostate (and affected nodes) is advisable. It is potentially curative if no distant Mets are found and reduces the tumour mass in my body which may help even if I need to try other therapies
Of course every situation is distinct, but I would recommend talking to your doctor about the merits of removing it. And ask for a second opinion
We asked the same question. Dr’s refuse to operate. Also consider the after effects of radical prostatectomy and quality of life. This is one of the readons the dr’s didnt want to do it.
It really depends on the doctor as far as the decision made to operate. I had several tell me no before finding one with a different point of view. Also a lot depends on the patient. Age, overall health and current standing with the disease. I was 46 and in good shape and doubtful had I been older it would have been offered. As far as side effect I have ED. Most treatment choices carry that with this disease anyway. The side effects of HT are no picnic either. Everyone has an opinion and mine is, if done correctly by a skilled surgeon, the rewards outweigh the risk.
in reply to Ldb01
They told me “ The horse is out of the barn”. No point in surgery for me.. Pc tumors spread to bladder and blocking urethra, inducing kidney failure,2 lymph nodes lit up. 8wks,5days a week of Radition plus ADT to date.. So far so good for me... 3yrs no visable signs or Psa... Take care...
Doug47 in reply to
What’s ADT
in reply to Doug47
Android Detention Therapy. = Lupron,firmagon, several others. All intend to castrate us chemically. That’s our goal. Who hooo. ! It’s a whirlwind at first. It should get better. Keep your faith...
I thought it was androgen deprivation.
i.e. depriving the hormones that stimulation prostate cancer growth - testosterone. This is why the side effect is ED.
in reply to paulparry
You are correct!! I spaced that out until now . Thanks fo pointing out my error! Our goal of 0 “T” has a multitude of side effects..I used to be excellent at spelling and pretty good at math ..4yrs of ADT has allowed me to live ,but zapped senses and cognition skills also
in reply to
Mine too
I had cancer in two lymph nodes near the prostate. My surgeon was happy to operate once he established it hadn’t spread beyond the abdomen. I had CT and bone scans which were clear. Operation was long and recovery is difficult but margins were clear of cancer and first PSA test was okay. He had made it clear that if it had spread outside of the local area he would not operate.
My CTs and Bone scans showed clear. Went with RP. All margins hot and no defined borders when procedure started. Surgeon continued and got all he could...2 1/2 mo later scans showed lymph nodes and bone mets. PSA up 10 pt. ADT-Chemo-Xtandi- orchiectomy. Finished Chemo- dropped ADT as not needed any more. Pushed PSA form 62 to 0.140. still on reduced Xtandi, but Drs say in remission. I chose surgery and hit it hard...worked for me.
Hard life changing desisions to make. Good luck.
x
Doug47,
I read your profile and posts. Here’s what I’d consider (based upon my personal experience)...
My background: I was diagnosed at age 53 in 2015, PSA 227, 1 bone met in T8 vertebra. Immediately started ADT, radiated T8, and early chemo. PSA was undetectable for a year, then slowly rose to about 2.0. Started Zytiga in December and PSA back to undetectable. Doctor diagnosed me as ‘oligometastatic’, meaning I had 3 or fewer mets (I had 1).
My doctor at MD Anderson recommended I have my prostate removed. This approach is not the ‘standard of care’...but I was considered a strong candidate for the approach because my T8 met was inactive and when I had CT scan, MRI, bone scan, PSMA scan, and circulating tumor cell test, I had no sign of cancer outside the prostate. I had the surgery 8 weeks ago and am doing fine. No significant issues. Pathology report showed no sign of cancer outside prostate.
I tell you all this so you know I’ve had a long journey and here’s some things to consider:
1) read as much as you can to educate yourself. The prostate cancer foundation is a great starting point
2) get your treatment at a cancer center of excellence if you can. They lead the trials that become the standard of care. I go to MD Anderson.
3) get a great medical oncologist who specializes in prostate cancer - not a generalist.
4) don’t be afraid to get second and even third opinion. I have a great oncologist in Atlanta and in Houston. Good doctors support getting second opinions. Mine helped me set it up.
5) having a prostate removed after cancer has spread beyond the prostate is experimental. They don’t know if it will help. But it might delay recurrence or possibly be a cure if you are oligometastatic (3 or fewer mets). I’m hopeful...
6) removing the prostate is a major operation, but if you get a very experienced surgeon the side effects can be very manageable. I’m proof that it is not bad ... I was back to work full time in a month. No incontinence.
7) I chose surgery over radiation so that if the cancer returns I can still have the option to use radiation later. And I wanted to get the cancer we could see out of my body. It’s called ‘debulking’...
8) however, many doctors will recommend radiation - and there are studies that suggest radiation versus surgery has similar long term outcomes and radiation may have fewer side effects. So surgery vs. radiation is a personal decision your doctor can help you decide.
9) you said your doctor said he thought you would live 5 years. No one knows how long we will live with PCa. There are PCa patients here who have lived for 15-20 years with it. Every patient is different. I have seen data that says an average of 5 years life expectancy. But that’s for patients who average 65 years of age and its before many of the new treatments were introduced.
10) there is lots to be hopeful for and reason for optimism. 😊. Just take one day at a time...and we are here to help and supper you and your family!
Best,
James
in reply to JamesAtlanta
I was also 53-4 and dx in 2015.. Take care JamesAtlanta! Good to hear from you.
A PC specialist is best to make thecall.
Research and read; then discuss with your Oncologist. In 2004, at age 57, my numbers worked out to 2-4, maybe five years. I just could not accept that at age 47, you won’t either when the shock wears off. You may have a great guy, but keep looking for that 2nd opinion. I made my decision based on the answers I got to this question, “If you were in my shoes, what would you do?” Twice the reply (from two Radiation Oncologist 200 miles apart) was to find the best Medical Oncologist who specialized in Prostate Cancer; not a generalist who handled all cancers. Preferably one in research and not tied to a particular standard of care. I found mine in academia rather than a primary private practice pro. The bulk of his time was spent in research, lecture, and then clinic for his “guinea pigs”, lol. My point is that a medical specialist considering his knowledge of his profession, just may make different decisions for himself after weighing risks. Ask your guy and listen to what he says. Good luck.
Gourd Dancer
Consider Proton Treatment.
Similar to the standard radiation but using protons, not photons.
A more direct and focused radiation treatment but with much less collateral damage to the bowel and badder.
California Protons in San Diego; Dr Rossi has provided me with localized treatment including bilateral illiac node treatment.
No bowel or bladder damage to me. One year out I have some edema to my legs but that could be due to Lupron or Extaxdi as well.
I have stopped both this August 1st and can update you in November when they should have worn off.
Consider a C-11 Acetate (Phoenix Molecular Imaging, Phoenix, AZ; Dr Almeida) whole body scan to see what needs to be treated. Perhaps a PSMA in San Francisco, needs a PSA >0.2.
No sense in getting radiation if chemo or Provenge is needed for a more systemic approach.
If it is limited to your prostate, and a few lymph nodes and bone, then protons followed by chemo with ADT and Xtandi the whole way through may do the job. The new thought process is all treatments up front rather than waiting for it to spread widely.
A C-11 or PSMA will tell you what you are up against and help YOU PLAN THE APPROACH.
A good MO will work with you. Plain CT and MRI still miss a lot.
Auxuim ... not so good; needs a higher PSA to be of value.
My best to you.
My doctor said once the cancer has left the host that there is no use of removing the prostate, my father in law had his removed but the cancer came back after the radiation and killed him. Fight the good Fight.
Hi Doug. I am also a recently diagnosed (June 2018) metastatic PC (with pelvic bone mets) patient. Age 63 and on "standard of care" ADT with 3 mo Eligard shot, daily Zytiga/Prednisone and most recent 30 day Xgeva shot. So far my PSA has declined from a high of 20 to 0.32 as of two weeks ago.
At recommendation of Oncologist I signed up for clinical trial at CINJ which includes "standard of care" plus robotic laproscopic RP (scheduled this Nov). Up until the last two weeks I was certain that I was on the right path and accepted having RP.
Then I attended the PCRI annual prostate conference in LA and have gotten a lot of info that has caused me to no longer be certain of having the RP and potentially dealing with life long side effects from the operation. All along the head of the clinical trial has told me that the purpose of the trial is to determine if the surgery can prolong survival in recently diagnosed metastatic PC patients, and that short term incontinence could be 30%. I am having a second opinion consultation with a recommended MO at Presbyterian Hospital in NYC this Wednesday.
I also received in the mail a few days ago a package, filled with good info , from PCAACT. Included was one of their quarterly newsletters that included a very detailed article from Dr Gary Onik, titled "My Thoughts on the High Risk Prostate Cancer Patient". In the article he had sections titled "Why robotic radical prostatectomy makes no sense in the treatment of the high risk patient" and another "Why radiation therapy does not make sense in the treatment of the high risk patient". He has an informative website at garyonik.com .
All of this info has given me more food for thought, and unfortunately more doubt about what my future course of treatment should be. I will continue to gather more research. I can resign from the trial prior to the scheduled surgery, but I want to become fully comfortable with it and will need to decide soon. I know there is no 100% certainty, and there are multiple opinions. I just need to cull through it all, and make the right decision for me.
There is so much to consider! Not to mention, this is all brand new to me. Thank you!
It must be confusing & especially at 47.
There is a wealth of advice on this site that you will not hear from most uroligists or oncologists,these are people that have been there done that.
Most surgeons do not operate after radiation because of scar tissue is something to keep in mind.
I was 62 when diagnosed with pca & if i knew then what i know now i would have had it out because once it escapes the prostate pod it goes anywhere & then radiation is useful.
As for ADT,well consider life quality before quantity is my thoughts
it seems that following the standard of care that you are doing is the appropriate
course.. your p s a may not rise for years on the zytiga and ADT ..RP is a BIG move..
Good luck.. Taxotere is always available down the line..
in reply to HopingForTheBest1
It’s a blitzcrieg ! You will do what’s best.. I was not a candidate for any surgery. Rt & ADt have kept me here. No one recipe fits us all.. Normally whatever treatment you choose there will be someone telling you that’s wrong.. Good luck & long life !
Had second opinion at Presbyterian, who recommends I stay in the trial and have the surgery. As for Dr Olnik, I decided not to pursue since insurance does not cover his costly treatments.
It's common to see people make decisions based on "clear CT and bone scans." These scans do such a poor job of picking up small tumors. The newer scans (Axumin, 68 Ga-PSMA) can do a much better job of determining if cancer has spread, and may be useful in deciding a treatment option. I would encourage you to read more and to seek additional medical opinions. Being on a similar path as you, I think the first advice of doing whole pelvic radiation is one you should discuss with additional specialists.
I was DX with metastatic PCa to my nodes and throughout my skeleton in March 2014. My Radonc suggested IMRT to my prostate and nodes, he felt it was less risky than surgery and could prevent further spread to bladder and urinary tract which is really difficult to treat. He also said I might get a little more mileage out of ADT before it goes castrate resistant by "debulking" the main tumor which is often done in other forms of cancer. Dr. Snuffy Myers said it was one of the best things that I've done in the treatment of my PCa - "get rid of the mother ship".
Four years after IMRT so far so good, no side effects to speak of and PSA is undetectable and scans show no active disease.
I continue being on ADT and also had chemo per CHAARTED TRIAL in 2015.
Ed
Dr Patrick Walsh also supports removal of the prostate, which he discusses in the new edition of his book. That book is a great source of information to help you make an informed decision. I was dx’d with Gleason 4+5, psa 45, and an Axumin scan found 1 pelvic lymph node. Bone scan negative. After consult with the head of Urology at the Emory Winship Cancer Center and with Dr Walsh at Johns Hopkins I decided that RP and IMRT gave me the best hope of a cure. Post surgery psa was .01, and I finish IMRT next week. Side effects are mild incontinence which continues to improve (1 light pad daily, except when I exercise). Trelstar ADT shot caused hot flashes which were almost completely eliminated by Estadiol patches. I exercise vigorously 3 times a week and have had no fatigue or other issues.
Learn all you can from your brothers here and elsewhere online. They have been a wealth of knowledge and support for me.
in reply to EdBar
You are hanging tuff EdBar!
I would head to Mayo Clinic to obtain a C-11 choline scan. It is covered by Medicare. Or go to UCLA for a PMSA scan, cost is around $2700 plus travel expenses. Without such a scan to identify exactly the location (s) of the metastasis, radiation may or may not be successful!
Good luck!
As long as you get it to stop making cancer cells you can leave it in. I had mine frozen twice in 2002- hasn't come back yet.
in reply to adlerman
That’s a good frieze!
My margins were compromised and surgery was ruled out by my surgeon. l did IMRT and am glad to have avoided the side effects of surgery.
in reply to Rmanns
Me too!
to Doug47:
As expected you've gotten plenty of good pro and con advice regarding "the removal of your prostate". The only thing I want is to echo that you get the advice of several Pca Oncologists ASAP. Yesterday you received two good referrals, one from Bill48162, a "Dr. Cooney at university of Utah" and one from Dan59, a Dr. Celeste Higano, at Seattle Cancer care. Whatever you decide you should never look back and say "should have, could have, would have".
Good Luck and Good Health.
j-o-h-n Monday 09/24/2018 8:35 PM EDT
My surgeon told me the risk to my urinary function would not be worth it. Since there is no way to be certain of getting all cancerous cells.
Luperon may be the way to go taken with radiation.
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