My husband PSA was 33 in November 2018. He was suffering from colitis and the PSA was an unexpected part of getting him on the path for that treatment. Biopsy finally done in February 2019 showed cancer in 11 of 12 spots, one with 4+3 GS7. Bone scan and CAT scan were negative. Met with surgeon on April 1 who recommended MRI and PET scan due to probable spread beyond prostate. Got the MRI results back. Hard to figure out. Here’s what Dr Wagner said: “As you can see, the MRI shows probable extensive prostate cancer outside the prostate. This is not surprising given the tables we reviewed at your visit. I await the results of your PET/CT scan.”
Surgery is scheduled for May 17. I want him to get a second opinion.
Is surgery the best option? It can’t get all the cancer right?
Isn’t radiation treatment or drug therapy a better course of action especially given quality of life issues?
Or is RP the best path then move on to radiation and hope it hasn’t spread?
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"Long-term outcomes appear similar among high and very high-risk prostate cancer patients deemed eligible for either RP or RT and treated after consultation in a multidisciplinary prostate cancer clinic."
Search on the following post for full story:
Radical Prostatectomy or Radiotherapy for High and Very High Risk Prostate Cancer?
Sorry but I disagree, surgery still helps a lot even with mets (especially regional ones) and has much better long term outcomes than radiation.
Debulking the main tumor prevents and reduces a lot of future serious complications, like many cancer cells morphing into neuroendocrine ones for example, chances of this to happen are much higher if the main tumor is not removed, surgery can still catch many of them before they spread and can also slow down the disease considerably.
My father did it and thank God he chose to do it, because I am sure he wouldn't be here today if he chose radiation and ADT only.
If the mets are very close to the prostate, then maybe.
Look at my case. I have mets in the right skull, the left neck, the left clavicular (collar) bone, in the left lung, several in the spine and thighs, etc.
What is the surgeon going to operate and remove ??
In conclusion, the present retrospective analysis supports the hypothesis that primary local prostatic treatment provides a palliative benefit to men who later develop CRPC. RRP [=prostatectomy/surgery] was associated with the lowest local morbidity rates experienced at CRPC stage and may achieve good local palliation in men who ultimately are not cured by this treatment modality
On page E252 they write:
Patients who received local therapy to the prostate (groups1 and 2) showed a longer mean time to develop CRPC (8years) compared to patients in group 3 (4 years).
So surgery seems to be beneficial, avoiding local complications and maybe against cancer as well.
That's what my partner has had done. Every specialists consulted (and they all met and discussed and said this was best option) as well as radio and ADT and possibly chemo. Gleason 8 and one other met in lymph nodes that were also removed.
We are getting PSA results Monday 6 weeks post RP. Will let you know what they said.
Yes. He had one met in lymph node right next to the prostate - they removed this and a few other adjacent lymph nodes - getting the definitive results of this and the PSA Monday.
Radiotherapy to the primary tumour for newly diagnosed, metastatic prostate cancer (STAMPEDE): a randomised controlled phase 3 trial
Results from this trial clearly show that radiation treatment to the prostate in newly diagnosed with stage 4 mHSPCa, with a low metastatic load, clearly show significant benefits in both disease progression and overall survival.
The result of this trial was a benefit for radiation + ADT versus ADT only. Guidelines recommended just ADT (plus Docetaxel or Abiraterone) without radiation. The report of the study recommends to add radiation to systemic therapy and change the guidelines. So radiation to the prostate for metastatic prostate cancer is now endorsed by the NCCN 2019 guidelines.
They did not have a trial arm that did surgery instead of radiation. The principal investigator (PI) of this trial mentioned that he would expect about the same result with surgery.
I'm finding it hard to understand the PSA levels. Maybe they measure them differently in Australia. Urologist told him his PSA was 7.8 - Gleeson 9 - Grade 4+4 the week before his RP.
I am afraid after this therapy your partner will no longer be fit. Chemo and Abiraterone are recommended when there are several bone mets detected with a bone scan. This is not the case here. A hormone therapy without Chemo and Abiraterone after the surgery can provide very good results:
Hi GP24. Highly unlikely for him unless his PSA is zero. The urologists, oncologists and radiologists in Adelaide meet monthly and discuss "interesting" cases (about 25 of them). They all want him to have "the kitchen sink".
He has had PSA move up and down between 5-10 over the last 24 months. He had 2 Urinary Track Infections and they put it down to this, especially when it went down after antibiotics. It was the cancer than was causing the UTIs and the PSA spike. They missed it. I was angry with them in the beginning but he remained calm and said "it is what it is... we just need to do the best we can" and we proceeded to get as much info as we can and consulted as many people as we could, even one researcher based in the US.
He has been worrying about long term ADT and ED. We have watched videos and read papers - our doctors have only touched upon this and have given him cialis from Day 1 and just said "this will help your blood flow". We now know that experts are saying "use it or lose it" and recommend injections into the penis twice a week if the cialis doesn't work (it hasn't). He is also going to ask about on/off ADT and if this helps with ED. They have mentioned 2 yrs of ADT.
He will remain exercising daily. We watched a documentary "Exercise and Cancer" on TV about effects of exercises post surgery and chemo and this has encouraged him even further.
We have used viagra plus muse with success. My husband is also younger (diagnosed at 49) and fit. We were told no surgery until PSA is lower. It has gone from >677 to 8 with lupron, Docetaxel, now Zytiga plus Prednisone. It has been about 20 months. He feels good, works, works out, etc. I have been reading everything I can find because I would love him to have debulking surgery.
There is one kind of radiation that is superior to surgery. Brachy boost therapy involves external beam radiation plus a brachytherapy boost to the prostate. It is about 3-4 times better at controlling metastases and twice as good at preventing death from prostate cancer compared to surgery or external beam radiation alone. To find out more about this kind of therapy, you would have to consult with a specialist in it. Where do you live?
This advantage holds even if surgery is followed by radiation. It is always a bad idea to go into surgery thinking you will have radiation afterwards. The side effects are much worse.
If you need more time to meet with specialists, he can have a 3-month Lupron shot now, which will prevent any cancer spread.
100 percent in agreement. Surgery would do little except severely compound side effects(think lifelong incontinence),,,,,particularly if salvage radiation should ultimately be required,,,which is almost a certainty given the diagnosed already local spread of disease,,,note I did state metastasis of disease. ADT, brachytherapy and ebrt in some form, using only the best of the best facilities. Local to me would be UCSF in SF.
I might also add a consultation with a very top proton beam facility for at least another opinion. Dr. Rossi at Scripps San Diego comes to mind.
Also ask about space oar to protect from rectal damage,,,their are strong opinions on both sides of this technology.
He should definitely be on Lupron or another ADT medication before radiation. This tends to localize and weaken cancer cells before being hit with radiation.
I had a DRE detected nodule and PSA doubling to 9.1. I had a biopsy and CAT/Bone scans Feb. 2018. I had most of 12 cores filled with Gleason 9, advanced PCa. They diagnosed me T2d (non-metastatic advanced PCa). My urologist/surgeon narrowed my options down to radiation or surgery, he said both statistically give the same chances. He said for older patients, surgery can be hard. However since I was 63 and is reasonable shape, I would be ok with it. He said both approaches can give side-effect and QoL issues.
I quickly weight all my options after my discussion, and chose to go for surgery. It wasn't until then, he mentioned a clinical-trial that I may qualify for. To shorten this long story, I met with the CT MO and after some tests, was invited to join. I spent 3 months absorbing the 'kitchen-sink' of cancer medicines, then I had my RP in June. Pathology from my surgery revealed that my PCa was actually T3a, which means it was extra-capsular (on the surface). The surgery and report also mentioned that all margins on the prostate and 24 removed lymph nodes in the area were negative. The supposition was that the medicines took care of most (hopefully all) of it.
Lastly, I can report PSA tests since then have been below threshold!
So I would say, yes, get another opinion. I don't know the age of your husband, but if he is not too old then surgery may be the better option. Also, a clinical-trial may also be something to explore. He will be place out of standard-care, and monitored more closely while in the trial. I wish you good choices. Best of health!
My husband is 53. Thanks so much for sharing your story. I will post an update in a few weeks after we get the pet scan and meet with the MO in Boston. Not much time to make a decision about the surgery... but at least we will have more information!
Side note: he is just so depressed and I am scared about qol issues for him. It’s a lot to take in and I feel let down in this process by our Hartford doctors who don’t really seem to operate as a team. There certainly doesn’t seem to be support for the whole person. At the same time I am not the patient so it has been hard to know what is out there for him. I think he’s been embarrassed and scared not a good combination. Thanks for listening everyone!
I am being treated at DF by Dr. Chaudhury , I fly up from Florida every three months.
They will take very good care of you. I won't go into my story now but while I dread my PSA every time I go I also feel good every time I walk in the door because I have drs. who are some of best in country treating me. My RO across the street at Brigham and Womans hospital, Dr.Huynh has been amazing. She did SBRT to a Met in my rib.
My first appointment with Dr. Chaudhury lasted an hour and half. I also went there for a second opinion.
I too went through a lot of what your husband is experiencing and can attest to how emotionally upsetting it all can be, as the various treatments drag on month after month. If Lupron injections are done the side effects can really mess with your husband's head, but a daily pill of Lexapro 10 mg helped me a lot. Tell him to hang in there, I wish I had someone like you with me when I went through it for 2 years.
53 is young. I am not an expert or anywhere related to the medical field, but was happy with my decision to go with a RP versus radiation. With my Dx being that of advanced yet non-metastatic (after biopsy), I remember the tilting factor for me making my decision. I was told that if surgery failed (recurrence after), that I would have radiation as back-up treatment option. Next I was told, the opposite is 'typically' not true. My intuition at the time was that I just wanted this 'mass' removed from my body.
It is very important you have trust in your care team. I did not feel comfortable with the first urologist I visited. I researched and found one with associations with cancer centers in my area, specialized in nerve sparing, etc. This was the best decision I made. He was booked out, however I was proactive in getting an earlier appt. with him (waiting several months to waiting a few weeks).
For all of us here, its' unearthly news when you get it. Depression, QoL concerns, life going forward, etc. It's damn scary. Tell your husband exercise helps (it really does!), especially when anxiety, emotions, and/or depression starts to set-in. Eating healthier also makes you feel better. Most importantly, take the situation day-by-day. It will get better. You have our prayers.
I too was 53 upon dx 4 years ago . I was hit hard by self imposed self loathing ,feelings of worthless ness and even suicide . That went on and off during my first two years under treatment . I wasn’t ready to become a women yet.. I turned angry and mean , but only on at my angelic wife , that only loves me . She saved me from pc . We wed after dx , me with APC and 3 tubes out of my urology . I’m lucky to be alive because I went into k failure due to pc tumors . Whatever treatments he receives , I believe from my experience that he shall live for many years . Of course I also believe that the more good stuff one does for self in this battle the better chances of improved health.I’ve done as much of the holistic stuff as I could afford . With you by his side and lots of patience and a little help,from above you two could have years together to form a new way of life . It’s never going to be the same . He’s permanently chemically altered , first by APC , then by treatments .. It is great that you found this forum . So you won’t be wandering around in the dark too much . I welcome his recovery after treatments . Look at this as the first round and the most important . His doctors will choose what’s right for him . Then it’s off to the races , there will be suffering , some take it hard , others fly through kind of unscathed . We all in general go thru the same stuff. We do help here on HU.. Get him help for depression .Exercise as much as possible even when he doesn’t feel like doing anything . Get him up for a walk or whatever . Fatigue has been one issue for me. The fact that the doctors are saying he is a candidate for surgery could bode well for him . I wasn’t a candidate for surgery . Welcome aboard the SS titanic ,it’s possible to tread this water for decades if all goes right . Once the decisions are made then one foot in front of the other . Getting started is the hardest part .. It’s fearful and horrifying at first , you will get past the fear and get him healed . Love and compassion are number one medicine in my book . After all ,he has you , he is not alone ., Bless you both in the heat of this storm we call APC .....I went into so far over three years of no visible signs of PC . I pray the same for him . It is possible to go into remission . Daily happiness now must be his goal . There will be drudgery , but we can endure just about anything when we have good reasons to live . I’m think that has many , mostly you by his side. Peace to you both from sunny Az. 😎🌵
Such kind authentic words and insight. Thank you and I appreciate your prayers and the support to this post from these fellow forum members is unbelievable and so helpful!
I was diagnosed at 53. Gleason 7. Elected combined brachytherapy and external beam at radiotherapy clinics of georgia in 2000.
Psa undetectable levels for 17 years. No ADT. Excellent quality of life with no significant side effects
Recurrence in lymph nodes 2018. Treated with radiation (tomotherapy) fall 2018. Psa now .14 four months post treatment without ADT
Recent article i have posted before reports 70 percent of men with RP have recurrence
Patrick Walsh published a series on RP back in 1999 showing significant levels of recurrence in men with gleason 7 plus as early as two years after surgery
I agree with whatsinaname. My PSA was 28 in 2010. Opted for Radiotherapy as spread outside the prostate and surgery wouldn't catch all. It's crept back up to 3.5 over the years and they want to perform a SALVAGE RP which I'm not doing... I've started taking Bicalutamide tablets for now and recent Choline Pet Scan shows activity within prostate but no evidence of Mets. PSA is now just over 1 so I'm happy as is unless it changes. Side effect (There's always something) of Bicalutamide is lack of strength, energy, stamina etc but at 69 yrs old I'm still working and accept life a 'good enough'.
My husband was in the same situation radiation is probably not an option given he has colitis. He went with RP . Find an experienced surgeon. He has also had other treatments since then going on 13 years with aggressive PC Gleason 9. Wish you the best.
P.S. Also where we live, Adelaide, Australia, all the Urologists refuse to undertake SALVAGE RP so if needed later my partner would have to go to another city. They say they wont do it as causes many problems and side effects. So if you have it, have it before radio.
I was in a similar situation. Chemotherapy, then brachy, then a direct radiation beam. All the while I'm on Lupron and Zytiga. My PSA is undetectable now and we just live while hoping for the best.
Solid scientific arguments on both sides in terms of survival & side effects/morbidity. Surgeons ard going to lean toward surgery and RO will lean toward whatever type of RT they offer. No wrong decisions here.
I've been on Zytiga, Eligard and , Xgeva for bone Mets 14 months now CT , bone, MRI scans all have come back with significant improvement. I have been doing okay on this treatment from the start and PSA is 0.1 from 1st month. My Doctor has suggested Immunotherapy Provenge to increase the odds. I will probably start that soon. We are all different in our fight but it seems the Arsenal we have to rely on is similar based on our stages. Never give up never surrender. Leo
33 PSA is quite high, as I'm sure you know. Did your husband have a bone scan done to see if the cells spread to there? I was at 21 PSA and my doc said I needed immediate prostate removal surgery, once he determined it had not spread to my bones, in which case it would have been too late. The cancer did, however, spread beyond my prostate, as my PSA was still high at 4.2, so I went through 2 years of Lupron injections and 38 radiation treatments, after which my PSA was all the way down to .01 & I was declared "cancer free". I should now live many more healthy years, I was told. Good luck to you & your husband.
He had a bone scan in March that was negative. The urologist also said the results of the CAT scan were negative but when we met with the surgeon he said something to the effect, you know since the CAT scan showed probable cancer I am recommending an MRI and a PET scan. I’m so glad for your good results. That is a long path of treatment to go down how great that it has worked out for you. It gives me hope and others too I’m sure!
There are no guarantees in cancer treatment. In my case I emerged from prostate removal surgery, Lupron injections, and radiation treatments with a PSA of .01. There's a chance it could return in 5 years and although further radiation is no longer and option they can do more Lupron. My doc says that at my age of 71 I'll likely die of something else before any return of the cancer kills me.
Opps I almost forgot my spiel. Would you tell us a little more about yourself. Age, Location and etc. (all info is voluntary). Helps us help you and helps us too. Please reply in a future post and NOT to me.
I’m 50, live in CT. We have 4 kids one is college, the rest are teens in MS/HS. I really appreciate the insight and support from this group. I think I joined back in January... thanks everyone for sharing your stories. It has been helpful.
I have no answer. Was to far gone to have to make that decision. Good luck with whatever choice you make. Really liked Lulu700's treading water analogy. Well said. Enjoy.
My partner had an RP with dr. Wagner in February. 54 at dx, gs 9 and very active. Dr. Wagner is the best. We came to him from another urologist in Danbury, who was good, but night and day difference. The staff at Hartford Hospital is great, so if you go there, I don't think you'll be sorry. My partner's cancer didn't show any activity outside the prostate but at surgery, we learned that it has spread to the lymph nodes. So looking at ADT and additional treatment depending on the results of the PET scan when we get that (or possibly an imaging trial at Yale if we get in). Bottom line is that dr. Wagner is very up to date on current treatments as discussed here, and I have no hesitation recommending him.
But here's the thing. It's your (husband's) prostate. You both have to be comfortable with the decision. If you are a candidate for surgery, Dr. Wagner will offer that option, and if you aren't, he won't. Brachy boost is also a good option. But you need to be comfortable deciding. By all means go to Dana Farber and get a second opinion until you're comfortable.
I just wanted to say that if you go with an RP with Dr. Wagner, that will not be a bad decision either. He is the best in Connecticut and possibly in New England. Ask him how many he does a year. It's a lot.
I did not have RP. I no longer have PCa. I can still get an erection and have a dry orgasm. It depends on where the cancer is whether or not to have RP. Radiation and Lupron worked for me. It took 11 years and 6 1/2 yeas of Lupron, but it worked and I still got all my junk.
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