Advice needed: I was was recently... - Prostate Cancer N...

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Advice needed

Scubafrog
Scubafrog

I was was recently diagnosed with prostate cancer. I am 56 years old.

My PSA is 6.29. I had a biopsy which came back cancerous. I was then sent for a MRI and then a fusion biopsy which also came back cancerous. Gleason score is 3+4=7.

My doctor, said that based on my test results, surveillance is not recommended. He is suggesting that my best options are surgery or radiation. He also stated that radiation may not always get all the cancer and said that surgery would be the best option for me.

Not sure if I should speak to a radiologist and consider radiation or have the surgery. I also am undecided on the type of surgery that I should consider, open or robotic.

Any help is greatly appreciated. Thank you.

56 Replies
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Hidden
Hidden

Robotic surgery for me it was and I am in all aspects (age, GS) more advanced than you are.

For me, after studying the literature for almost six months, it boiled down to a non-medical dilemma: You become the target of a vicious extortionist gang (your cancer). How do you deal with them?

First strategy:

a) Pay a large amount of your life time savings (quality of life) to another gang for a contract to kill the extortionists ("cure" in drs parlance). Twofold risks involved here:

a1) If the contract gang is not capable enough and cancer survives it will become much pissed-off/harsher at you.

a2) The contract gang manages to take out the extortionist, but they are a gang all the same and now you have become their "client" ("side effects" in drs parlance).

Second strategy:

b) You cut a deal with the extortionists for paying ransom in installments (in quality of life tokens) so they don't get aggressive at you. A risk and a tactic here:

b1) You are dealing with a gang don't forget, so you never know if their word is valid. Your first installment may quench, or not, their greed.

b2) You have to spread all your tokens in time, so they will last you longer.

Think of it this way and it may help you deciding.

Scubafrog
Scubafrog in reply to Hidden

Hi justfor,

Thank you for the information, I like the way you think. I am going to take my time and do the research.

Hi there, had PSA 7.2 , with Gleason 7 and similar experience with MRI and biopsy in 2016. I chose to go the Robotic Prostatectomy route. This was followed by radiotherapy a year later as the PSA crept to 0.7 over several months after the RP. Last year July/August I had second session of radiotherapy as the PSMA scan had finally showed the position of cancerous cells which previous PSMA scan had not shown.

Scubafrog
Scubafrog in reply to soffers

Hi soffers,

Thanks for sharing. I truly hope that you are doing well now. Sending good thoughts for a speedy recovery!

Did your docs say anything about Pca spreading to lymph nodes? If all Pca is contained in the prostate then there is a good chance of getting it all with surgery. Then you hold radiation as a backup in case it returns.

Scubafrog
Scubafrog in reply to Magnus1964

Thanks for the reply.

No, doctor said that he feels it is contained to the prostate and has not spread. I am leaning towards surgery at this point.

I always hate the word "feels". based on what? Has he/she recommended a PET scan. Without a scan they are simply guessing.

At 56 you seriously need to contemplate highly effective radiation treatments that have a lower chance of major, life-changing side effects. I was 52 with 3+4 and got very real about the consequences of surgery from a side effects standpoint. Measuring worst case scenarios makes you look a lot harder at effectiveness studies for HDR beam (cyber knife ) and HDR brachy. Ultimately if you are considering quality of life and the fact that your cancer is contained and slow growing, you have the luxury of researching the best procedures and interviewing the smartest doctors in radiation. I went with HDR brachy and am confident more people would go this route if they knew both how manageable (two short treatments, walking out same day) and effective it really is. Honestly, I have been pretty much side effect free after 2 years with my PSA in check. Please feel free to message me with any questions.

Joes-dad
Joes-dad in reply to Scubafrog

Please get as many scans as you can. You want evidence if the cancer has spread outside your prostate. Without that you could second guess yourself on your treatment plan.

In my case my 2nd option Dr asked for new scans that showed enlarged lymph nodes that were missed on the review of the 1st scans. That made my decision easier and I'll never second guess my decision.

Keep us posted on what you decide. We are always here to help or talk to.

Bob

Iam not one for surgery....but if it is contain may be the way to go....whatever you chose side effects come in to play...risks with all we chose 🙏for guidance

Scubafrog
Scubafrog in reply to SPEEDYX

Thank you for the advice, much appreciated

Filotimo62
Filotimo62 in reply to SPEEDYX

Robotic surgery is the way to go to get the little buggers!!! Good luck.

With your favorable intermediate risk PC, all treatment options are open to you and they are all equally good at providing cures. There was a randomimized trial in the UK that proved this:

prostatecancer.news/2020/02...

You spoke to a urologist, who recommended surgery, of course. You owe it to yourself to get out and make the effort to talk to a variety of specialists. I spoke to 6 different specialists and took 9 months to decide. There is no rush - you have plenty of time. For now, decide not to decide.

At the end of the following article are questions to ask the various specialists and questions to ask yourself:

prostatecancer.news/2017/12...

For the surgical options (open or robotic), results are identical, although there is greater risk (but very small risk) of peri-operative problems with open. The critical thing is to find a surgeon who has done a LOT (thousands) of the procedure he practices.

The radiation options divide into two categories- external beam (radiation from the outside in) and brachytherapy (radiation from the inside out). Results are pretty much the same, although side effects may differ. Not all therapies are available in all places, so you may have to travel or accept what is available locally.

I especially recommend you explore SBRT (CyberKnife) and high dose rate brachytherapy. They have the excellent outcomes (especially potency preservation) with the least amount of bother. I do not recommend conventional IMRT because it is expensive and time consuming. I do not recommend protons because it is even more expensive, time consuming, often not covered by insurance, and results no better than IMRT. Focal therapy may be possible depending on the number of positive cores, but there are many unswered questions about it.

I'm sure you will have many questions as you begin to study your options- please feel free to ask.

Scubafrog
Scubafrog in reply to Tall_Allen

Hi Tall_Allen

Great advice. I appreciate you taking the time to post the links to the articles, very informative.

I will definitely take your advice under consideration before I decide what treatment is right for me.

kapakahi
kapakahi in reply to Scubafrog

Tall Allen is a gold mine to be treasured. And that's an understatement by an order of magnitude.

Flydoggy
Flydoggy in reply to Scubafrog

Take all the advice you can get from Tall Allen, that is the best advice I can give you...wish I had the information he has given you when I was first diagnosed at 56...That was 6 years ago for me by the way. He knows his stuff.

Take your time and explore all your options. I guess the "bonus" of surgery is you get a definitive answer about your cancer, with a pathology report. That is not important to everyone. My husband opted for a RP (robotic prostatectomy) but he did not get a good surgical report even though his imaging pointed to it being contained. It was not. He is now getting radiation.

Def speak to a radiation oncologist, do some reading and weigh the pros and cons.

Scubafrog
Scubafrog in reply to fluffyfur

Thank you. Yes I am definitely going to speak with the radiation oncologist and explore all avenues.

I hope that your husband has a speedy recovery!

Thanks again

fluffyfur
fluffyfur in reply to Scubafrog

One more thing, I have noticed that people on the internet tend to push and favor their treatment. Just because it worked for them doesn't mean it's right for you. We all have different needs and different genetic compositions. You need to choose what seems right and then just move forward. Each treatment has positives and negatives and at this point I don't think any of them are foolproof.

Scubafrog
Scubafrog in reply to fluffyfur

Very true! I was thinking the same thing

Don_1213
Don_1213 in reply to fluffyfur

Indeed. People need confirmation that what they chose was right - and the way to do that is to have someone else do the same treatment.

A good decision would be based on finding papers on studies, done recently (since all forms of PCa treatment have changed a lot in 10 years) and find one where the patients had a similar profile to you, then go look at the numbers for recurrence and total mortality.

And see lots of MD's for opinions. In my case I saw 6 - and in the end chose 3 as MD's I could work with (non-affiliated MD's, each solo practitioners) - one Urologist/Surgeon, one Radiation Oncologist and one Medical Oncologist. All three suggested that radiation/ADT treatment would be best for me and have the best results - so that is what I did. It seems to have worked for now - I've been undetectable for about 15 months now. So that worked for me - but I wouldn't recommend it to anyone else. Everyone is different, and perhaps has different tolerances for side-effects - so the decision has to be a personal one made by the patient.

Scubafrog
Scubafrog in reply to Don_1213

Thanks Don, advice much appreciated.

Hi Scuba, I was diagnosed October, 2018 ( aged 67 ) with Gleason 7 advanced ( 4 + 3 ) with extensive cancer throughout 9 of the 12 core samples. Extra-capsular penetration/ breakthrough beginning in one of the core samples. Completed maximum IMRT radiation and six months hormone therapy (Firmagon ) in April 2019. Without knowing your particulars none of us can state with any certainty what is the best option for you. I can state, however, that I would NOT agree to any surgery without first meeting with an unaffiliated urological practice, and an unaffiliated urological radiation specialist. Depending on your age and location , I would consider going to a Clinic such as Mayo or Cleveland, or one of their branch locations in Arizona or Florida. I would also consider the nearest University Hospital. Review the professional analysis and advice, and then proceed accordingly. All Best wishes for a successful outcome, judg69

Scubafrog
Scubafrog in reply to judg69

I am in the Boston area and my doctor is the Chief of Urology, at Massachusetts General Hospital. I am lucky to be living in an area that has excellent hospitals and medical care.

I am going to do further research and get a few more opinions before I make a decision.

Thanks for the advice!

CalBear74
CalBear74 in reply to Scubafrog

Consider Dana Farber, one of the best in the world. Be very cautious of the mass general urologist. Being a very accomplished Urologist still leaves him just a urologist. I spent more than 30 years in the healthcare world and it is truly a very competitive scene. Good luck to you. Never hesitate to get multiple opinions from different institutions.

Explore and research all options before you decide what to do since what you decide can have a significant impact on your life. If cancer is confined to the prostate look at Proton Beam Therapy as an option as it doesn’t have the negative side effects as traditional radiation or surgery. Before my husband’s biopsy, when we thought he might have prostate cancer, we read two books on prostate cancer and the many different treatments. We had decided that’s what he would do if his biopsy was positive. You may have to travel for it but it would be well worth it. The place we had planned on going was Jacksonville, Florida. All locations have apartments for rent just for patients getting this treatment. Unfortunately, my husband wasn’t able to go that route as he was diagnosed Stage IV, metastatic to bones and lymph nodes, at initial diagnosis. Good luck to you and I hope you are lucky and that it truly is confined to your prostate. A quote that helps get me through these times is, “Things don’t always happen for the best but we can make the best of things that happen.”

Scubafrog
Scubafrog in reply to Avanat

So very sorry about your husband 😔

I appreciate your advice. I did some research regarding the Proton Beam Therapy that you mentioned, and found that the hospital where my doctor is (Massachusetts General Hospital) offers the Proton Beam Therapy. I am going to contact them and see if I qualify for this.

Thank you for the quote, I will use that to help get me through whatever is down the road .

All the best to you.

Avanat
Avanat in reply to Scubafrog

Thank you. That is fantastic you live in an area that offers great healthcare. Like the other posters here, take your time, do your research and decide on treatment that is best for you. There is definitely no ‘one size fits all’ with this type of cancer. My husband, Stevana, posts here also. He is on ADT and is getting ready to start chemo and a clinical trial of an immunotherapy drug. The clinical trial is being run out of Dana Farber, in your neck of the woods.

I would recommend seeing a radiation oncologist, for all the reasons Tall Allen wisely points out. I received the same advice as you, and chose surgery without giving radiation a fair shake — and now I regret it as I chase after the remaining cancer almost three years later. Take your time and make a thorough decision. You’re also young, and radiation (particularly brachytherapy) might preserve more of your (ahem) function.

>>>

. . . . He also stated that radiation may not always get all the cancer and said that surgery would be the best option for me.

Not sure if I should speak to a radiologist and consider radiation or have the surgery. I also am undecided on the type of surgery that I should consider, open or robotic.

>>>

(a) If he said (or implied) that surgery _will_ always get the cancer, he was not telling you the truth. You can get the odds of long-term surgical success from the MSKCC nomograms:

mskcc.org/nomograms/prostate

(b) There are various "focal treatments" which are the prostate equivalent of a "lumpectomy" for breast cancer. They have the advantage of fewer side-effects than either surgery or radiation. And they may buy you years of time before you need "definitive treatment" (prostatectomy or whole-gland radiation).

(c) Don't expect a urologist, or surgeon, to give you a fair presentation of radiation therapy. Go for a consult with a radiation oncologist, see what he/she says. The radiation guys have results that match, or exceed, surgical results.

(d) You don't say whether you're sexually active (or want to become sexually active). If you are, you need to do some reading on the side-effects of prostate-cancer treatments. Either in this forum, or on this booklist and resulting thread:

inspire.com/groups/us-too-p...

(e) Depending on the details of your biopsy, you _might_ qualify for some "active surveillance" programs. Check it out. Lots of docs consider the vast majority of men "unsuitable for AS", although the AS programs have very good survival stats, and would let many of those men in. There's a strong "bias to treat", for many docs.

Take your time --

. . . it's an important decision,

. . . . . . . . you don't have all the facts you'd _like_ to have,

. . . . . . . . . . . . . . . . . . . . . and "I'll just do nothing and forget about it" isn't a good option.

Keep in touch --

. Charles

definitely speak to a radiation oncologist, before deciding. Urologists are surgeons, so it's not surprising they recommend surgery. Surgery may not get all the cancer either, very frequently it doesn't. the side effects of surgery are very significant, don't be fooled!

Scuba -

lots of good replies for your situation. Someone mentioned different types of focal treatment. Let me mention an upcoming treatment that some leaders in this field are advising may well be a go to treatment for PCa...... it is an ultrasound treatment by the name of TULSA PRO..... I suggest Google and the posts by Virginianorthern at

inspire.com/m/Virginianorth...

This is available at a number of clinics in Europe, and now a few here. In addition to using the TULSA PRO treatment for focal ablation of tumors, it can also be used for whole gland treatment, just as is done using radiation. Unfortunately, at this time insurance plans are not covering this treatment, and appare tly the cost is in the ballpark of $30,000 here, and perhaps for less in europe.

Studies have shown lesser side effects with TULSA PRO...which is a huge advantage. If the $30k is anything you might consider, you should investigate this procedure I think. Virginanorthern hs excellent posts on the protocol.....with links to studies, etc. He underwent the procedure as part of a phase 3 trial.

Hi Scuba, there is good news wrapped in the bad news of your prostate cancer diagnosis: with your PSA and Geason score all treatments are and option so my advice would be to pick the one that suits your lifestyle and temperament, and provides the least chance of a lifelong side effect. I had a PSA of 5.1, and of a 14 core sample my biopsy showed 2 cores at 3+4 and one core at 3+3, giving me an overall score of 7 (3+4).

I also had my samples sent to John's Hopkins for review to confirm the analysis. It's important you get a second review of your samples by a renowned lab to confirm. JH confirmed the results for me. My bother and law went so far as to have a second biopsy conducted at Sloan Kettering. He was reduced from 8 (4+4) to 7 (4+3) by Sloan.

I ended up with Cyberknife - finished my treatment in May. I did not want the risk of surgery, especially full anesthesia. I did not not see the purpose of putting my body through that trauma - and it is indeed major surgery. My brother in law opted for seed implants. We are both doing well.

I was 56 when I had a PSA of 36

Gleason 4+4

I was single and was hoping to meet a lady to spend the rest of my life with.

So a healthy sex life was important to me.

I own a golf course so many older gentleman gave me their advice.

I went for Brachytherapy and radiation. I was back in the gym 24 hours after Brachytherapy. I changed my life and became fit and healthy.

I have never had a problem getting an erection. Orgasms are great and I have about 50% reduction in my ejaculate.

I did have slight pain after 18 months. But that was normal and has since passed. I can honestly say having Prostate cancer made me a better and much healthier person. I am now 58 with a PSA of 2.1

I am very fit and have a very good sex life.

I do not have to take hard on tablets. They are for men who have ugly wives lol

Sorry for the joke but the best thing that will help you through this is laughter. It’s only Prostate Cancer. It could be a lot worse my friend. Good luck in your decisions

Hi Scubafrog,

Everything about your situation is similar to mine. In the balance I decided to opt for the surgery because I was advised that having had surgery, should the cancer come back, then radiation can be your backup card.

I had a perineal robotic surgery. There is also an option called robotic laparoscopy which is done through your tummy.

I live in London and had my surgery last November.

Apart from erectal dysfunction which I’m working on and hope would rectify, l am doing well.

I don’t know where you live but, here, robotic surgery is the preferred choice.

Any information please stay in touch.

I decided to skip surgery and go directly to radiation (proton) for my small, contained, G 4+5. I also had 18 months of adt (Lupron/casodex). After 3 years, everything OK except still no sex drive, psa undetectable. BUT, G9's have the bad habit of reappearing after a few years, so I sleep with one eye open.

Bob G9, age at diagnosis, 75

Have you had a DRE (digital rectal exam)? Along with PSA, if a nodule is detected its' growth over time can be a concern. As many have mentioned above, take time to make your decision. Just be sure while doing so, you get your PSA regularly tested (say every 3 or 6 months). I would also ask for a DRE with each visit. Do not to let time pass by, as PSA can double quickly.

My PCP tracked a (DRE detected) nodule during annual exams. I was told since PSA was below 4, the nodule most likely is benign. In late 2017, my he noticed a small growth in the nodule. My PSA had grown to 3.8. He then referred me to an in-network urologist.

This urologist performed a DRE and ran another PSA test. He found the same results. He recommended a biopsy, however also provided an option to wait 6 months and test again. The 2nd option as my PSA was below 4. I went home and read up on this biopsy. The invasive procedure led me to decide on wait and see. Time passed and I post-poned to ~10 months later for the subsequent visit. At that visit, he reported nodule growth. My PSA test had come back much larger at 8.9. A definite wake-up call!

Scared and not feeling comfortable with this younger urologist, I searched hard & fast and chose a seasoned urologist. I became proactive (in urgent appeals) to get the first and earliest appt. available. The first opening I was told was 6 months off! I supplied more medical records, referrals and such, and asked for reconsideration. I managed to get an office visit ~6 weeks later. He performed a DRE and ran my PSA which came in at 9.1. I was now on his patient list, and thus timeline. He scheduled me for a biopsy 1 week later. The biopsy came back G9 in 9 of 12 cores. Scans a week later were clear, which placed my Dx as locally advanced, non-metastatic (T2d).

In a soon after office visit, I discussed treatment options. He said radiation and surgery had similar outcomes. He said since I was 63 and in good health, surgery was an option. If I had been much older and/or in poor health, he would not recommend surgery. He offered me a referral to specialist in radiology if I wished to explore that option as well.

I wondered what could be done if my chosen option failed. What would be follow-up course of action or treatment. He said if surgery failed (cancer became recurrent), I could have radiation treatment. However if radiation failed, surgery (in most all cases) is 'not' an option (due to prior radiation). This was a factor in my decision.

Also a factor in my decision, my chosen urologist. He specializes in nerve-sparing. He works at UW Medical Center which is networked in with Seattle Cancer Care and Fred Hutch Cancer Research. He is well respected throughout the academic and medical community. Most important, he had performed thousands of RPs. I trusted his care.

Once I chose the surgical option my urologist brought to my attention a clinical-trial. It involved 12 weeks of neoadjuvant (before surgery) trial-medicines. Interested, I was referred to the MO administering the trial. Through him I learned of its' purpose, then agreed to get tested for eligibility. I entered into this trial and when through 12 weeks of trial-meds prior to having surgery. I believe this was a great decision on my part, as pathology from surgery revealed extra-capsular extensions (surface cancer) on the prostate. My Dx was then more accurately placed at T3a.

Surgery went good. All surgical margins were negative. The prostate and 24 lymph nodes were removed. Downside - two-thirds of nerves on the right-side removed due to surface cancer.

I am now ~26 months post-surgery. All my PSA tests have measured below threshold. Continence (an issue at first) came mostly back at ~6 months after surgery. As for ED, it is at ~50%. Sildenafil helps some, however I have had to adjust to a new life norm.

In your decision going forward:

> a DRE (if not performed) can provided added insight

> find a specialist you feel comfortable and confident with

> while deciding, continue PSA tests (each 3 to 6 months)

> take your age and general health in your decision making

> consider a clinical-trial option, if one becomes available

I wish you a good outcome in your choice going forward!

45RPM
45RPM in reply to tkalaf

I am also in Seattle with UW. Who was it who did your RP? I have been talking to Dr Ellis there who came recommended for RP.

tkalaf
tkalaf in reply to 45RPM

Dr. Ellis. He performed my RP in June of 2018. You have my recommendation. I wish you the best! Take care, and stay healthy!!

get 2nd and 3rd opinion on all reports reports

Welcome, newbie.

I am not as cynical as my brother "justfor" ---

1. educate yourself. There are tons of good materials available from cancer societies, MaleCare, USToo. Purchase a copy of The Key to Prostate Cancer by Mark Scholz, probably the most up to date (2018).

2. Take a deep breath and recognize: yes, it is cancer; no, it is not an emergency. I have time to figure this out.

3. You will learn that outcomes are equal for radiation (RT) and surgery (RP).

4. You are intermediate risk and active surveillance (AS) is not the best recommendation.

5. RT & RP have similar and overlapping arrays of side effects.

6. You are young so your cancer is likely to be more aggressive; cannot ignore it expecting to die of something else.

7. Yes, speak to a radiation therapist (RT).

8. Yes, speak to an oncologist (MO) who is familiar with the rapidly changing literature of PCa

9. The RT and perhaps the MO will recommend combining RT with "hormonal therapy" as the "standard of care." Read a lot about the side effects of hormonal therapy (ADT) and ask repeated questions about how much better are the outcomes with RT+ADT compared with RT alone or with RP alone.

10. REMEMBER, your RT and your MO do not have to live with those side effects and are focused on one outcome ONLY: survival-months. You have to live with the side effects and only you can decide if an additional X months of average survival is worth going through what you will go through.

Blessings.

Get a second and third opinion. I also had GS 3+4 PC diagnosed at 54. I started with AS then opted for focal cryoablation. No radiation, no surgery. My MSK doctor said I was cancer free after last biopsy. My point is, everyones situation is different with size and location of the PC, but DO NOT rush into surgery or something that could be life changing without exploring all options. My first radiologist here in Phoenix gave me very bad information that was cleared up at MSK. Do your homework and wishing you the best.

You need to meet with as many doctors and talk to as many people with experience with this disease as you can to find your own answer. Frustrating but true. For me it was the hope of catching it while still contained that I opted for robotic surgery (my Uro delayed my biopsy 18 months from the first sign of trouble). Turned out to be stage 4, GL9. But I still fee good about my choice....and will continue to deal with things and be as informed as possible going forward. This web resource is a GREAT help.

Scubafrog

Your situation sounds similar to mine back in November 2018 when I was diagnosed.

From the sounds of things, there isn't any rush? I got three opinions based on an MRI, one ultrasoun12 guided 12 core biopsy, G3+4 and PSA of 5.0 --I went with surgery, though radiation was an good option. I recovered quickly with virtually no side effects. However, the post RP pathology found one surgical margin. I'm glad I did surgery just because the picture of what's going on seems pretty clear at this point. Take the time you need to figure out the best way for you? Be proactive as hell and question everything.

As the others have said, you're in a good position with lots of time to make this extremely important decision. When I was diagnosed in 2014 with a G4+3=7, I was told to choose between surgery and radiation. It wasn't until years later that I even heard about FLA, HIFU, TULSA, Cyberknife, Brachy, Cryo.

When I recently asked my senior MO why no one had mentioned them, he said it's because they "don't work," at least to the level of the SoC.

I was a bit shocked. If you're talking about a SoC whose SEs are fairly benign, I'd have no objections to that, but that's certainly not the case. Here we're talking about men living decades with impotence, the depression that accrues to that, unhappy wives, not to mention incontinence, etc.

If I were on top of the PCa food chain, I'd have a video made that explains the pros and cons of all these options for primary treatment, and also explains the SEs of ADT, because that can be an adjuvant to radiation. I'd do what I could to force every hospital to ensure all initial diagnoses of PCa come with the doctor that the patient (and wife) watch it.

I had an RP with a positive margin and a post-op G4+5=9, sending me into radiation and 24 mos ADT, which caused me suffering beyond description, not to mention what I put my wife through. If I had been told that ADT would likely extend my life buy a few months, but I'd spend the next three years in misery (24 mos plus recovery), I would have laughed, and politely refused it.

Again, take your time.

You can always get a second opinion. My PSA was 27 with the same Gleason as you and I elected radiation therapy which ended a year ago. My results are now favorable but there are serious side effects of both options so be sure to ask about all possible outcomes. Neither the urologist or radiation oncologist divulged what could happen. Be informed. I am fine with my result as I am still here and healthy.

Late last year I was in the same position as you. After 11 years on active surveillance the recent biopsy was g7 4+3 and PSA 7. Time to make a decision.

A book was recommended to my, Dr. Patrick Walsh's Guide to Surviving Prostate Cancer (full disclosure I have no financial interest in the book, do not sell or publish). It is from Johns Hopkins. It covers options like surgery, chemo, radiation and such. It has some good guidance on the decision process and different options. I read it completely first then used it as a reference when deciding.

Lots of good advice here, especially about having your slides reread at a different location.

There are side effects and serious complications with any method. I choose surgery for several reasons, one being the scan indicated the cancer was organ confined (it was) and by taking it out they could tell better if it was organ confined (it was). No guarantees, cancer cells are extremely small small and could have escaped however the odds are good. PSA went to undetectable.

One thing, when considering surgery whether to go open or robotic is the wrong question. If you decide on surgery find the best doctor you can with at least 250+ surgeries done who is willing to share outcome and side effect probabilities. The skill of the surgeon matters, not the technique.

The robot is a misnomer. The robot does not do the surgery but is really a remotely operated device dependent on the surgeons (generally there are 2, one doing the surgery and the other at the patient assisting). From my point of view it is another possible point of failure.

I did research and chose the surgeon. He operates laparoscopicly. He was open about the side effects and the percentages that occur in his operations. He had well over the magic number of surgeries.

It is major surgery. I went in the morning of the surgery and was in the hospital overnight, discharged the next day. No blood transfusion needed. Went home and so far recovery has gone well.

Good luck going forward and whatever you decide I hope all goes well.

Is your cancer confined to your prostate gland? If not, surgery may not be the best option for you. My advice would be get some advice from urologist, medical oncologist, and a radiation oncologist before you take the final decision.

Scubafrog
Scubafrog in reply to dac500

I am being told that it is confined by the doctor, but not sure what he is basing that on. I have had a biopsy and a MRI fusion biopsy. I definitely need to get another opinion.

Murk
Murk in reply to Scubafrog

Want to know for sure get a pelvic and nuclear body scan. They inject a low radiation substance that travels throughout your body. So after giving you a few hours they scan you head to toe and the cancer lights up, showing if it has Metastasized (spread).

ditto to getting a second opinion on your biopsy- epstein at JH! my husband also had a favorable gleason- 3+4, and many even suggested AS. thankfully we got a second opinion b/c epstein upgraded him right away! and he ended up having 4+3 + tertiary 5. also intraductal carcinoma! what's the saying here? truly "knowing what's growing" will help you make your decision. good luck!

Thank you all for the advice! I am so glad that I found this website. I was so nervous after hearing “cancer” that I was trusting the word of one doctor, and didn’t realize the importance of a second/third opinions.

Today I made an appointment at Dana Farber Cancer Institute in Boston. Will keep you all informed.

Thanks again for the advice, much appreciated!

I had the robotic prostatectomy followed by radiation and I am free of the cancer based on my latest PSA of <.01. If you have the radiation first it will not be possible for you to choose surgery later. This means that if your cancer lingers you will be going for treatment for a long time. I recommend the robotic, followed by radiation if necessary. Good luck to you.

Scuba, Get a number of copies of your MRI and biopsy report.

If it were me, I would send to Eric Walser, UTMB Galveston, Dr. Karamanian in Houston, and Dr. Feller in Palm Springs, and get there input on possible treatment.

Best of luck.

Hi All,

Just want to give you an update.

I researched, and read everything that I could find to assist me with making my decision. I even read Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer, which many of you suggested.

I made an appointment and met with three doctors at Dana Farber in Boston, Radiation Oncologists, Urologist, and Medical Oncology. This would have been my 3rd opinion from another well known cancer facility.

Dana Farber scheduled a complete bone scan and thank god, the results came back negative. They agreed with Mass General that it is contained to the prostate. They reviewed the MRI and discussed with me the location of the tumor. The tumor is located inside but very close to the outer wall of the prostate.

I was originally told last January that my PSA was 6.29. February I had my first biopsy which was a Gleason score of 3+3. Because of Covid, I had to wait until June for a MRI fusion biopsy at Mass General which showed a Gleason score of 3+4. After consulting five different medical professionals at three reputable hospitals, I have made my decision to have surgery at Mass General on September 15th.

The urologist that I have chosen, has performed over three thousand of these surgeries which helped me in making this difficult decision.

Thank you for all of the great advice that you have provided. Will keep you updated. 😊

I had my surgery 2018, my pathology report was 3+4 score. My PSA after 6 months is .03 then .04 , .06 then after 10 months .07. My PSA velocity is so slow considering .01 in 10 months . I am not bothered since .1 below is considered undetectable as per Dr. Chan of John Hopkins Hospital. To exceed .2 is still far to consider you have the biochemical recurrence. I am still hopefull since my Doctor consider the result of my PSA is still insignificant.

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