Prostate cancer Please help
Comments
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Ablation
My husband (55) was diagnosed with prostate cancer October of 2017. His initial pathology showed 4 +3. He had two previous MRI guided biopsies before the big biopsy. We consulted with Dr. Joseph Busch in Chattanooga, TN for his MRI's, and Dr. Busch performed the guided biopsies. At that time, we discussed possible ablation if Jim's biopsies came back with positive findings. After his 3rd biopsy which took 14 core samples, it showed Gleason 7 (4+3) with two areas testing postiive. A little more agressive than your dad's but still within guidelines for successful ablation. We talked with Dr. Busch's preferred ablation specialist in the Netherlands - Professor Jurgen Futterer. His assistant's email is Solange.Estourgie@radboudumc.nl. However, I would probably contact Dr. Busch for a consult -( jbusch1@epbfi.com. 423-622-7212 - Jeannie is his gatekeeper) Everything is out of pocket for Netherlands procedure.
There are two ablation study programs going on the US now. One at Memorial Sloan Kettering in NYC, and one at Mayo in Rochester. All paid for including expenses. Contact for Memorial Sloan Kettering is Kathy - 1-646-497-9068. The contact for Mayo is Deb 507-284-2511. The doctor heading up the study at MSK is Dr. Behfar Edhaie. He is an oncologist and surgeon. The doctor heading up the study at Mayo is Dr. David Woodrum.
We actually went to MSK to apply for the study. Was accepted. They ran my husband's biopsies through their own labs, and his Gleason Score actually came out higher - 4 +5. Not what we wanted to hear. Sent pathology over to Johns Hopkins - they concurred with Gleason score of 9.
This put us out of the ablation program in the US. We could sitll have it in the Netherlands, but the thoughts of a Gleason 9 and ablation just didn't add up for our choice.
My husband did months of research, and all roads led us to Dr. Edhaie at Memorial Sloan Kettering for his treatment. He is also a patient of Dr. Mullhall at MSK who is the leading ED specialist in the world. He had nerve sparing robotic surgery on 1/30. All lymph nodes removed, prostate removed. We were blessed with excellent pathology report past surgery. Downgraded his Gleason to a 7 - lymph nodes clean, nothing outside the prostate, margins clean. I cannot say enough good things about our experience with Dr. Edhaie and his staff at MSK.
You will have to weigh your options - which you have. Just take your time. Even with my husband's gleason score of 9, we didnt' rush to surgery. He took time for healing after the biopsies which takes a minimum of 12 weeks. This helped with nerve repair, and with the nerve sparing part of his surgery. He lost 50 lbs, got in the best physical shape of his life (walking helps with bloodflow to key areas that are affected by surgery - 5-7 miles daily for us) and he is doing so good post surgery. For him, he will tell you he didn't have pain from the surgery. Cathater was awful! Recovering from surgery has been tougher emotionally than physically.
We just returned from his follow up visits this weekend in NYC. PSA is undetectable! He's in the top 15% for recovery, ED issues are improving - in fact he's doing great there. Bladder issues have finally turned for the good, and he's improving daily now. It's a process that takes time, but he's so thankful for the skill of his surgeon.
A friend of ours had ablation last July in Miami. His latest followup test last month showed some areas that were missed. PSA rising. He's weighing options on what to do. Thougth I would throw this out. I would apply for ablation at either MSK in NYC or Netherlands if you dad's biopsies are confirmed to be a 3 + 4. My opinion - Get your dad's biopsies reviewed at MSK and Johns Hopkins (Dr. Pollack) - Dr.Busch can help with coordinating these as well.
That's my two cents worth on your question. Good luck. Just don't let fear direct your decisions. Removing the prostate is a life changing event - but teaming with one of the best mdical groups in the world providing us with phenomenal outcomes. We are lucky!
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JessJess4566 said:Thank you, I am looking into
Thank you, I am looking into this as well. If anyone has done this please post your experience
Individual reports on an internet forum are just anecdotal. Please consult the original papers for 'real' data. Hopeful has posted data that are reliable. Go from there.
You can also search PubMed for papers by Alan Katz; here is a link to a recent publication (230 patients; 10-year outcomes) by him:
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Prostate Cancer
Hi,
Sorry about your father's prostate cancer diagnosis. His numbers are very close to mine. I was diagnosed five years ago with prostate cancer. My prostate was three times the normal size and the doctor had a hard time finding cancer. After three sets of biopsies in six years he finally found the cancer. First biopsy was 9 cores. The second was 16 cores. The third was 21 cores and done under anesthesia. My Gleason score was 7. 3+4.
I had the DiVinci procedure to remove it four and one half years ago. I have been going for PSA blood tests every three months since surgery. My last test was six months ago with a reading of .001 non detectable. The surgery took seven hours with very little side effects. This was a nerve spareing procedure and everything works a before but no prostate. The doctor that did my surgery was extremely skilled and was an expert with DiVinci.
Tom
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Nanoknife is indeed used for PCaOld Salt said:Nanoknife
The Nanoknife is never used for prostate cancer. But Stereotactic Body Radiation Therapy (SBRT) can be used to fight prostate cancer. We have several frequent posters on this forum, who have used SBRT (including me). The latter can be done with several instruments; the best known is CyberKnife. I do suggest that you and your Dad learn about this therapy.
https://www.mskcc.org/videos/irreversible-electroporation-nanoknife-treat-prostate-tumors
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"but he's so thankful for
"but he's so thankful for the skill of his surgeon. "
"The doctor that did my surgery was extremely skilled and was an expert with DiVinci."
Thank you, graycloud and Thomas for sharing your experiences. Regardless which treatment or procedure , the skill and experience are paramount.
It is a very difficult venture, but the professional you choose is every bit as crucial as the treatment you choose. What Max said is so true... you have to feel at peace and "comfortable" with your professional. If you read far into these archives, the successful treatments give credit to skilled and experienced professionals. The worst nightmare scenarios almost always involved novices or inexperienced professionals who are trying to overachieve or "bite off more than they can chew" .
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InterestingASAdvocate said:Nanoknife is indeed used for PCa
https://www.mskcc.org/videos/irreversible-electroporation-nanoknife-treat-prostate-tumors
I guess I was too outspoken and should have written that the NanoKnife procedure is not routinely used in the USA to treat prostate cancer. From some casual reading, it appears to be 'early stage'. The company that makes the device writes on its website:
FDA: The NanoKnife is intended for the surgical ablation of soft tissue in the United States. The FDA has not cleared the NanoKnife System for the treatment of any specific disease state or condition.
Clearly (?) MSKCC must have gotten approval to treat prostate cancer patients.
PS: I copied the following from a 2016 paper by Wagstaff et al:
In theory, focal treatment in prostate cancer is a promising approach as current conventional therapies have a lot of limitations. Radical prostatectomy and radiotherapy both have poor functional outcomes, with high rates of urinary incontinence and erectile dysfunction. It is believed that IRE has the potential to overcome these side effects. However, to date, there is little evidence on oncological outcome and no long-term results of IRE in prostate cancer are available. To our knowledge, there is sufficient evidence to say that IRE is a safe and effective focal treatment modality in prostate cancer, but a large trial is needed to warrant its oncological efficacy.
Note: IRE is the academic term for the NanoKnife procedure
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Laser Ablation
Aloha,
I just had the procedure, (focal laser ablation) performed March 20th 2018 in Houston (Dr. Karamanian Prostate Laser Center). I could not be happier with both the treatment and the results. Like your father, I too, had a Gleason of 3+4=7 That's the short and sweet. For all the details please see my blog. Simply google "magicsparkes wordpress" (note the e in Sparkes).
Peace and blessings to you and yours!
Doug
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Sounds like your Dad & I are the same person!Jess4566 said:My dad is 58 years old, he
My dad is 58 years old, he doesn't smoke and he doesn't drink. He has shown no symptoms of prostate cancer expect for the increasing psa levels. Still doesn't. It is localized only to the left side of the prostate. 4 out of 10 cores tested postive. Of the 4, two scored a 3+4=7 and the other two scored a 3+3=6. We aren't set in stone as what we should do as of now. We have been talking to many doctors and getting their opinions. Another option, maybe, is doing immune therapy. Has anyone done this? What were your scores? Thank you for your words. I will continue updating as we travel down this horrible road.
Hi Jess,
I, too, am 58 and until a little over a week ago, I also had Gleason 7 (3+4) prostate cancer. After a lot of research, 4 different doctors, and even my qualifying for a Memorial Sloan-Kettering (MSK) trial study in NY and then having that taken away without much noitce, an old high school chum with similar prostate cancer turned me on to focal laser ablation in Houston with Dr. Karamanian. I have no measurable side effects. The procedure happend on a Tuesday and I returned to work this last Monday full time ... all my parts are working as normal. To be sure, focal laser ablation is not a magic solution. Not all men qualify, but my stage 2 cancer certainly did and I am praising God for how well he answered my prayers. For my own therapy I started blogging about the whole process last summer. You can find it by simply googling "magicsparkes wordpress" Note the small e in Sparkes. Also, the blogs are quite lengthy...nine blogs combined equal the size of a small novel. So, if you ever have insomnia, maybe peruse my blog to help you get to sleep! Peace and blesssings to you and your father. I'm thankful for your posting as I will pray for your father, you and your family.
Doug
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Pathology Warning ResponseJess4566 said:Pathology
Ok guys, I have the pathology report. Tell me what you think.
Left lateral base: Gleason score of 7 (3+4) grade 2. Less than 5 percent of tumor in core. Perineural invasion present. (How do they know they there is PNI? How do they see its tracking a nerve?) No ENE or lymphatic vascular invasion.
Left base: Gleason score of 7 (3+4) grade 2. Tumor involves approximately 20 percent of the core. PNI present. No ENE or lymphatic vascular invasion.
Left lateral mid prostate: Gleason of 6 (3+3). Group 1. Tumor involves 20 percent of the core. No ENE, PNI, or lymphatic vascular invasion present.
Left mid prostate: Gleason score of 6 (3+3) group 1. Tumor involves less than five percent of core. No ENE, PNI, or lympharic vascular invasion.
The right side looks good, no tumors found. The left lateral and apex also have no tumors. All the tissue is white and soft. Is that good? Does that mean somewhat healthy?
The doctor discussed with him his options: active surveillance, radial prostatectomy, radiation therapy, cryoablation, and HIFU. My father is looking at laser ablation or the nanoknife. I know the doctor didn't say those...
Hi Jess,
Crikey, your father and I are very similar with regards to prostate cancer. Last summer I talked with four prostate cancer experts, including a major Urology Professor at UCLA. They all said due to my young age (58 being relative) that I did not qualify for the radiation treatment (pellets or radiation bombardment). They all also shot down HIFU and cryoblation as being very unreliable ... The funny thing is not one mentioned laser ablation whatsoever. In my very jaded opinion, (hey, I can admit that I am jaded), the whole industry is bent on having men go through having a "Robotic Radical Prostatectomy." The pros is that this procedure will get rid of ALL of the prostate cancer and that is a good thing, but the con is all the side effects that come with it! Ah, don't get me started!!
Doug
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Need to state this again about Focal Laser Ablation
Not my opinion, but a recommendation from an expert panel of urologists from the American Urological Association
Clinicians should inform low-risk prostate cancer patients who are considering focal therapy or high intensity focused ultrasound (HIFU) that these interventions are not standard care options because comparative outcome evidence is lacking. (Expert Opinion)
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Side effects from surgeryJess4566 said:Thanks guys. For those of you
Thanks guys. For those of you who had the divinci procedure you experienced no urinary incontinence or sexual impotence? And they removed the prostate gland but spared the nerves? Is that correct?
Urinary incontinence is common, but may get better over time. Same for Erectile Dysfunction, and some people never recover. But you need to look at the percentages of these side effects. Anecdotal reports (there are a lot of them on this forum) do not predict outcomes. One really needs to dig a bit deeper.
With respect to nerve sparing, most surgeons will try, but there main mission is to eradicate the cancer and in some cases, the nerves will be destroyed to get rid of all cancer. I think that one can ask the surgeon what the chances are for this to happen during the decision process. It will depend on the location of the cancerous loci within the prostate. And even when ;th nerves are spared, it may take a long time (a year or more) to recover sexual function.
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I see that any focal therapy
I see that any focal therapy isn't a guarantee. It's a hope that it works. Most will do the true and tried method-surgery or radiation. There is considerably more research on those than any of the new technology today. But if focal therapy doesn't work, it can be done again. And if it still doesn't work then, yes, the true and tried method. But no body is truly cured from this disease. Even with radial Prosectomy, there's still a chance the cancer can come back. This is backed from an oncologist whom we saw today. But we can't afraid of doing something new. At one point radiation was new and most people scoffed at that and would suggest just cutting it out. But we all have different opinions and I respect that. Sometimes it works. Sometimes it doesn't. We just have to try and keep fighting.
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side affectsJess4566 said:Thanks guys. For those of you
Thanks guys. For those of you who had the divinci procedure you experienced no urinary incontinence or sexual impotence? And they removed the prostate gland but spared the nerves? Is that correct?
My husband had successful nerve sparing robotic surgery.
After my husband's surgery, he did have "temporary" incontinence issues. He's still wearing a light pad, but each day is getting better. He is still healing internally, and it takes about 4-5 months for the internal stitches to dissolved completely. He's dry all night, and literally dry most of the day. You can tell when the bladder muscle gets tired about the same time every day after exercising, working and moving all day. He's doing physical therapy twice a week to help with building up the pelvic floor muscles. I can't say enough about incorporating physical therapy in to your pre-surgery plan and your post surgery plan. The PT has been the best thing physically and mentally for him. It's given him goals to work on at home, and positive reinforcement from the therapists. The things that bother him now are getting in and out of the car, and heavy exercise/weight lifting. But he's able to get in and out of bed at night, and make it to the bathroom! He's able to hold it for over 2-3 hours during the day with no leakage. He can cough and sneeze without leaking. His surgeon told him it's a process, and it is. The first 3-4 weeks were hard - really hard. But he is improving dramatically daily over the past 10 days. (Surgery 1/30).
His ED issues - it's a new normal now but we are both ok with the new normal. Alot of men wait for several weeks to "heal" before starting back with intimacy - we waited 2 days post catheter removal. He was able to get an erection post surgery even with the catheter in. Now he's able to maintain for more than 10 minutes, size is much better, and sex is getting better every time. Was he frustrated at first? Yes. But we knew his surgeon was successful with the nerve sparing part of his surgery. We both had to work together. Honestly, he doesn't need the "challenge dose" or regular does to get things going anymore.
There are a number of things you can do pre-surgery to help with sideaffects. Physical Therapy for pelvic floor muscles. Viagra (generic Costco brand) every day pre surgery. We started 45 days before surgery due to husband's diabetes and blood pressure issues. We had sex every single day 45 days before surgery for increased blood flow. Exercise every day (walking 5-7miles) for increased blood flow. Losing weight - he lost 40 lbs pre surgery and anotehr 10 pounds post. Healthy diet.
Research the best surgeons in the country. Big Cities. I can't say this enough. My husband is type A personality control freak. This whole cancer process has been so hard on him. A Gleason 9 score at 55 is enough to send anyone over the edge. His doctor and team have been awesome in his care both pre/during/post surgery.
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Nanoknife
The Nanoknife is never used for prostate cancer. But Stereotactic Body Radiation Therapy (SBRT) can be used to fight prostate cancer. We have several frequent posters on this forum, who have used SBRT (including me). The latter can be done with several instruments; the best known is CyberKnife. I do suggest that you and your Dad learn about this therapy.
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