On the fence about my treatment choice.
Hi guys. I'll try to do my best to relay all the facts and where I'm at. I'm turning 60 in a couple weeks. One year ago, PSA 3.2, nodule felt during exam. Six weeks later, follow up PSA was 3.4. Saw urologist, he suggested biopsy. 3 of 12 random cores positive Gleason 3+3, left side of prostate. Perineurial invasion present. Had an MRI. No spread outside prostate, no seminal vesicle invasion. Prolaris genomic test was "low risk." PSA actually dropped to 2.9. Consulted with radiation oncologist and medical oncologist. All said active surveillance. I was thrilled. As I was at my local hospital and live not far from Boston, decided to go up to Brigham and Women's/Dana Farber just to double check. Brigham and Women's reread biopsy slides and confirmed Gleason 3+3. Top urologist agreed with active surveillance. Wanted PSA check and targeted biopsy 6 months later based off of previous MRI. Had targeted biopsy in Sept. 4 of 12 cores positive. All less than 50% positive and all Gleason 3+3. PSA was 3.37. All looked good for active surveillance...BUT.....one core contained 40% intraductal carcinoma! Damn. Urologist says this excludes me from active surveillance and that the presence of intraductal carcinoma can serve as a marker of higher grade cancer somewhere else in the prostate. He wants to do surgery. Saw a top radiation oncologist and he said brachytherapy is an option. Sent me for a PSMA PET scan. PET scan showed contained in left apex of prostate. No metastesis. Urologist sent for decipher test. It showed "high risk." Damn. Just had PSA taken again. Current PSA is 3.5.
So...currently scheduled for robotic surgery on Dec 7th. One more meeting with radiation oncologist this coming Tuesday in case I change my mind and decide on radiation.
On one side....only Gleason 6 has been found. MRI and PET scan show no spread outside the prostate. PSA is relatively low and stable. Up from 3.2 to 3.5 in one year. Only 4 positive cores on targeted biopsy. All less than 50% positive. One core was 40%. Other three much less than that. Cancer confined to left side only. Prolaris test indicated low risk. Stated 1.7% chance this would kill me.
On the other side....one core contained intraductal carcinoma. Decipher test said high risk for metastasis and recurrence. Urologist is top in his field and has done around 5000 robotic prostatectomies. States that due to location in left apex, no guarantee he can save nerve bundle on left side. Right side nerve sparing looks good. That worries me. I was hoping for bilateral nerve sparing.
Is this a cancer that will not spread or is it high risk and I got lucky and caught it early before it spread. Do I go with surgery and salvage radiation if it comes back someday or go with brachytherapy? If it truly is high risk, I've heard brachytherapy has better success rates. I'm worried about becoming impotent if he can't spare all the nerves. I've heard intraductal carcinoma is resistant to radiation therapy and surgical removal provides best odds.
Thoughts from those with experience and those that have been diagnosed with intraductal carcinoma?
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I opted for surgery to have better options down the road if there is recurrence. Side effects have been minimal for me. There are people that have had success and failures with both surgery and radiation. Decision can be difficult. Best you can do is get as much information as you can and make an informed decision. Don't look back. Sounds like you've done right things examining options.
Sorry, no info on intraductal carcinoma.
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Hi,
From what I have read Intraductal is sometimes hard to diagnose , maybe a second opinion to look at the biopsy and lab reports?
Dave 3+4
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Yeah. That's the tricky part. In my original biopsy, it noted, "atypical intraductal proliferation." That's where something looks like it could be intraductal carcinoma but it doesn't quite meet the requirements. That was done at my local hospital in RI. My second biopsy was done up in Boston at Brigham and Women's/Dana Farber. Supposedly, my slides were reviewed by a team of pathologists. I would have to assume that they are some of the best up there. I will say that the whole operation is very efficient and they were great at getting my my doctor appts and all the tests I needed in a timely manner. I'm leaning towards surgery. I suppose it could go either way. There may very well be higher grade cancer detected after RP and I'll be glad I did it. Or they may just find all low grade Gleason 6 and then I'll be sorry I didn't stay on active surveillance.
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Sorry to hear of your diagnosis. Lots of changes no matter what you decide. Hopefully they can spare both nerves. I chose RARP and had it removed. Up until being sedated, I kept reconsidering my decision but am glad I chose surgery. You can read my story at https://csn.cancer.org/discussion/320408/treatment-choice-based-on-age-family-history-psa-biopsy-mri-treatment-facility-and-surgeons-e/p1
I am pretty much recovered but it took time and LOTS of patience as I adjusted to the changes. It is a major decision and life changing experience but you are doing the right thing by learning as much, asking for input from those who have gone through it, and taking time to prepare mentally. Prior to my surgery I routinely worked out 3-5 days per week and after surgery it took quite a while before I could lift weights again. For the first coupe of months there were days I was pretty down due to the urinary incontinence and inability to hit the gym but as time progressed things kept getting better.
Another good resource: http://yananow.net/
Best wishes and keep posting so others can help you get through whatever you decide.
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My one for sure recommendation is to get a second opinion on the intraductal carcinoma finding. Send your slides off to John Hopkins for a review. It’s just too important not to get an external review.
A comment…it kind of makes me angry on your behalf that your first hospital did the biopsy before the MRI. Best practice is the MRI helps guide the biopsy.
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I had thought about another opinion on the intraductal carcinoma finding. I'm currently working with Brigham and Women's/Dana Farber up in Boston so I do trust their findings. That is an option though. My local hospital, where I got my first biopsy, noted "atypical intraductal proliferation," which is, as I understand it, abnormal cell growth in the ducts but it doesn't quite meet the criteria for intraductal carcinoma. I had those slides sent up to Brigham and Women’s to be re read and they did confirm the findings of my local hospital. The medical oncologist at my local hospital had ordered the MRI and I also brought those results up to Boston. The urologist up there conducted the targeted biopsy off of those MRI results.
I didn't know enough to ask for an MRI before my first biopsy. That's, obviously, the best way to do it. I was uneducated on prostate cancer. Since my initial diagnosis, I've done countless hours of research, watched many hours of lectures, read two books, talked with multiple people who have had prostate cancer, and met with 6 different doctors.
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I was similar, one step behind the process at first. It was dumb luck that my local hospital didn’t have availability and I went to a major center for my initial care.
I have had two pathology looks, after my biopsy and after my HoLEP procedure. Both, I sent off for a second opinion. The first review differed, upgrading the biopsy. The second agreed, giving me a warm and fuzzy that I was making my decision based on solid data. The hospital had no problem sending it off.
A side note on PSA, I had aPSA check that came back 1.0 based on on my primary care docs test order. I also had an order in from my urologist, so 6 days later I had another test. It came back 0.83. Those scores can bounce around!
If you go with surgery, I’ll be thinking of you on December 7th, both Pearl harbor day and my daughters birthday.
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I'm off to see a radiation oncologist today for more ideas for treatment. He is an expert on brachytherapy. I have to admit, I'm not very excited about placing permanent radiation into my body. Radiation doesn't excite me too much. And I'm not excited at all about the possibility of having to go through ADT if the radiation isn't totally effective. Although, supposedly, the cure rates with modern radiation are equal to or better than surgery with better side effects. My urologist did perform surgery on two co workers. He was able to save the nerves and they both experienced about a month of incontinence and around 6 months of ED issues. Both say they are fully functional with the help of a little cialis. I could deal with similar results. If I don't need diapers and I just need to pop a pill once in a while, I'd consider that a win. I have no ED issues presently so I'm hoping that's a real possibility for me. I like the "idea" of getting it all out of my body, just not excited about going through it.
Please tell me about your procedure. I had an appt with a doctor, at Dana Farber, that specializes in focal therapy, mostly HIFU. The appt got cancelled and rescheduled for the end of January. I think I've gotta make a decision before then. Maybe it was a sign?
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Glad to see that you will get treatment. Both radiation and surgery have a very good likelihood of success. Potential side effects differ a great deal. I do not think that HIFU is the way to go. Focal treatments are just that and further treatment down the line may well be necessary.
PS: There are two kinds of brachy. In the more classical one seeds are placed inside the prostate that will gradually decay. After about ten months very little radioactivity is left. In the other method (HDR brachy) needles containing radioactivity are inserted (via tubes) close to the cancerous sites and removed the same day. There may be a second session.
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My HoLEP procedure was to address my urinary issues. Big time BPH. So not a cure for cancer, although they did remove 100cc of my 140cc prostate, which gave them a good look at what was in there. Unfortunately, most PCa is in the peripheral zone, so what I have is still there.
It absolutely resolved any urinary issues, and also made me a candidate for radiation, which is my choice if and when the day comes. I am no longer a candidate for HDR brachytherapy, which would have been my choice. Some kind of beam eventually, or who knows what new therapy will pop up.
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Notttttt true…i did radiation and n brachytherapy i had a high risk tumor as you do ..it didnt work i truely believe if i removed it i would be done with it and now here i am having to make another decision about treatment ,,you said that you heard the cancer you have could be radiation resistant and the best thing is to remove it .radiologist do radiation and they will tell you anything. I had a radiologist. The first one I saw told me to take it out he owned his own practice. He could’ve made a lot of money off me, but he told me at my age to take it out the other radiologist at UCSF didn’t tell me that I should’ve had the radiologist and the surgeon at UCSF both get together and both decide what would’ve been the best treatment for me that was a mistake I made I would go with your gut if you got says remove it remove it like you said I put radiation in me just to lead to another cancer later to me there’s three steps to prostrate cancer one is surgery and if it comes back 2 its radiation and then because back 3 the dreaded hormone treatment, don’t be like me and skip step one and go to step two I did and I regret it it’s up to you . I look at it this way youbarecputting radiation in you which is a poison trying to kill another poison, which is a cancerous tumor the poison you’re putting in you could cause another cancer down the road and it might not kill the cancer that is in you if you take it out it is gone Can’t come back in the prostrate, the prostrates not there like what is happening to me
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Thank you for your response. This is such a personal decision for all of us. It's not so much the treatment but just the life changing side effects we must live with and adjust to. It's so very hard to compare one situation to the next. There are soooo many factors. The grade and severity of disease, someone's age, current health condition, current level of continence and sexual function, the knowledge and skill of your medical team...it goes on and on. I've talked to sooo many people who have been through it and everyone's situation is just a little different.
I have met with three doctors up at Brigham and Women's and Dana Farber. I've met with a medical oncologist, a urologist and a radiation oncologist. The urologist and radiation oncologist are tops in their field. Both have their own specialty but both are on salary and have no financial incentive either way. Both have been in contact with each other. All three have told me that, based on my particular test results, my age and current good health and function, my best bet is surgery. I have surgery scheduled but met with my radiation oncologist yesterday. He said that my PSMA pet scan was about as good as I could have hoped for and that my cancer appears contained within the left apex of my prostate. No spread anywhere in my body. He said that he could do brachytherapy but that he would also want to do ADT along with it, if that were the route I chose. He said that he felt my best odds, at this point, were to just remove it. I will have to trust in the skill of my surgeon. He has performed surgery on two friends of mine and they both had good results. They both regained full continence after about one month and regained erectile function. They do use a little cialis but I can live with that. Although brachytherapy is initially less invasive, the thought of placing radiation within my body and dealing with the horrible side effects of ADT, doesn't excite me. The bottom line is that there is no easy way out. If I were 75 years old, I suppose I would just chose IMRT and hope to knock it back for 10 years.
Anyway, that's where I'm at. Pearl Harbor Day is my D-Day. Keep me in your prayers.
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Well, looks like you are doing your homework. There are many reasons to choose or not to choose a specific treatment plan. I explored options as you are doing. I chose radical prostatectomy. I felt radiation would have a bigger impact on me time wise in respect to Quality of life things that my wife and I like to do. I had my RP in March 2018. Coming up on 6 years with a PSA .04ng/ml. I am continent at this time. I am intimate with my wife. I was aware of the possible side effects going in. I filled a many Depends and thick Depends pad for around 4 months and by the 6 month I had control of it. It is my understanding this happens because they dissect the internal bladder sphincter leaving you with just an external bladder sphincter. If you do go with RP be sure and get the post op biopsy report. It very well may predict what is to come. My surgeon was very experienced (I think over 2000 RP's). Also, he put me on Sildenafil (similar to Viagra) a month or so before the surgery. He said to look at that as fertilizing the area. I did not experience a total loss of erection. This worked itself out. If you have an RP, you may experience urine flow during orgasm. Make sure you urinate before being intimate. Anyway, I realize my comments may be a little blunt force to some people, but I can tell you the items above happened to me. I know my test tube, it is my test tube. Good luck on your journey.
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Still waiting to see if anyone here was diagnosed as low grade Gleason 6 but with intraductal carcinoma. All doctors have told me that that takes active surveillance off the table. I'm really bummed out as all that has been found is Gleason 6 and my PSA is a relatively low 3.5 and has been stable over the last year. I hope I'm doing the right thing with surgery. I'm turning 60 this month but I'm in great shape and feel as good as I did when I was 30. I have zero symptoms and great erectile function. Not crazy about the possibility of possibly voluntarily crippling myself. Ugh.
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As a wife, our nightmare started on 2007. Normal PSA. Urologist felt nodules in his exam. Biopsy 9 0f 11 positive. Gleason 7. Surgery for total prostatectomy. Scan showed to be only on prostate. After surgery, urologist called me to shared how aggressive was the cancer. The cancer had spread outside prostate, including seminal vesicle invasion. Shocking news for both of us. 13 weeks of radiation. Minimal incontinence after PT. PSA .0 for about 7 years. Then started increasing very slowly. 2018-20… terrible urinary clots requiring assistance from urologist. 2021… bladder was removed as radiation just burned it…. Once bladder removed that PSA started going up! Full bone scan showed metastasis to the right pelvis. Short radiation of 10 days. PSA went to 2.2. After very closely monitoring and starting pO chemo PSA went to 30. Changes in P.O. chemo meds. In Aug, severe pain in the hip and spine. Short story- his cancer is now in bones. 3 weeks ago, supposed to have hip replacement- 1 hr before admission, surgeon did X-rays - cancer is now in the lungs. No surgery, his survival 50% and refused to do surgery. Continues chemotherapy since it helps with pain as well as pain management.
sharing story: do your homework and know that everyone is different and the cancer may surprise you! We do not know how long we have but we have decided to enjoy life each day. I love him today as I did before when he was running marathons and completely fit! Once you make a decision, know that it’s your best decision with all the research and data available as well as recommendations from the experts and second opinions. Best of luck to all of you! Stay strong and embrace your partner to be right beside you on this fight!
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Hard to tell how common this is, but it's generally a good idea to get a second opinion if there is any doubt at all.
You just have to ask the office responsible for your biopsy to send the samples on to Johns Hopkins pathology. They should know how to do this. If not, here is a link:
Get a Second Opinion | Johns Hopkins Brady Urological Institute (hopkinsmedicine.org)
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Regarding Gleason 6 and intraductal morphology, I’ve talked with many other Gleason 6 men on various forums over the years, and this is the first time I can recall someone having that.
Yours is a rare case, if the intraductal diagnosis is correct.
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