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Hello just diagnosed and very frightened

Steve1961
Posts: 250
Joined: Dec 2017

I was just diagnosed Thursday by my urologist . PSA 7.8 ..had 5.5 for many years with 3 biopsy’s and were all good. This last one not sooo good.2 out of 12 showed some cancer .thsts all I know until I see the specialist next Thursday.thoughmy urologist did give me encouragement saying we caught it very early whatever that means...don’t know what to ask the specialist on Thursday I guess my biggest fear is if it has spread or not ..any input would be muchhhhhhh apppreciated ..thanks in advance ..how I am 56 years old 

hopeful and opt...
Posts: 2226
Joined: Apr 2009

These guys are the experts....the middle name for each of the docs is "prostate"

They will want to do their own T3 MRI; they will probably not accept the results from outside facilities, so wait until you speak with them....by the way ANY doc can order an MRI to include but not limited to a radiation oncologist.

Sub Denis gave you very good advice. Take your time to research and don't operate out of fear and panic...........also, stop beating yourself, no more coulda, shoulda...

Grinder
Posts: 441
Joined: Mar 2017

Welcome to the club no one wants to join. Similar to Max, I was dealing with a recurring Staph infection in my prostate. It was very large, like a hot soft giant blob in my business, and completely shut down my plumbing. There was no pain, which is why PC is a silent killer, you don't know you have it. The only sensation I felt, even when the prostate was at its largest, was a glowing heat emanating from the prostate into the surrounding nerve tissue... and typically accompanying UTI urethra pain. After a barrage of antibiotics, we got it down to 250cc during the biopsy, and with daily Flomax and Cialis, was able to keep the plumbing open enough to knock out a small stream. Further treatment got it down to 197cc by the time of my surgery. The biopsy was Gleason 6 3+3, and normally a candidate for AS. But, I was in danger of the Staph infection eventually becoming resistant to the antibiotics if I continued to try and keep the prostate size down to around 200cc by treating the recurring infection with the antibios over and over again.

My point in all this is your prostate may seem big now at 55cc, but with BPH, PCa, acute or chronic prostatitis, pathogenic infection, or a combination of all these, 55cc may not be the maximum yet and you are only 56 years old, you may still have a lot of prostate fun and games ahead.

So yes I had my prostate removed, but like the guys said, the PCa had not escaped the capsule and Gleason score was low. 

But like they are saying, whether you and your doctor settle on the three types of treatment, MAKE SURE you get the best oncologist and/or robotic surgeon available. There are unfortunate cases on here that experienced side effects that others who had the same procedure did not, and if you read far enough back into the archives there is one element that the worst side effect cases usually have in common... an inexperienced oncologist or surgeon that struggled with the learning curve of the particular procedure. One patient had his colon burned by off target radiation and now has no bowel control, others have permanent incontinence from surgery. Not trying to scare you here, just trying to make sure you look out for your own best interest, and that means getting experienced professionals, not "the next guy up". Yes, everyone has to learn from the beginning, but why should you be their practice dummy.

I myself had a great surgeon... But I went through 5 different urologists at different clinics. This particular surgeon was recommended to me by a friend, and he has many years of experience under his belt. My giant infected cancerous prostate was taken out, and I have not had a UTI since, the incontinence is about 95% better, and the ED is almost cured completely. BUT, in case no one mentioned this yet, if you do get the surgery, you will lose 1 to 2" of length. When the prostate is surgically removed, a corresponding section of your urethra goes with it, then the remaining is pulled up and reattached, causing your tool to retract an inch or two. If you were 6" before, you will be 4 -5" after surgery. In your case, only 50cc, you will probably only lose an inch. I

Just some things I thought you should know.

Steve1961
Posts: 250
Joined: Dec 2017

best advice on picking a good surgeon honestly I am looking at either stanford or UCSF but there are other great places around .should I look at age I dint want someone real old and then again  what is too young .was looking at a guy he is only 37 but he is at Stanford for a good reason sooo draining but appreciate all the help

Steve1961
Posts: 250
Joined: Dec 2017

Also I take it after surgery I guess urine flow becomes better slowly...my flow has been weak for about 5 years now just wondering

CC52
Posts: 103
Joined: Nov 2013

You've been here for one week. You have what appears to be a very low grade/low risk pca diagnosis. You haven't had any of the recommended tests to determine what else - if anything - may be going on. Many members have given you their opinions on your situation based on the info you have provided.  

And now, here you are talking about surgery without giving yourself an opportunity to:

1) Take a breath and reflect on the news that you have cancer. Have that glass of wine or a beer or two

2) Give youself a chance to study your specific results and treatment options that would apply in your case

3) Given your low grade and involvment - you should give serious consideration to Active Surveillence

4) If you choose to get the cancer out - surgery would be last on my list. Radiation, specficically SBRT (Cyberknife) is what I and many others here have done, with great results

5) Everyone here has had to make the decision that is right for them. You are no different, and if you believe surgey is best, then go for it.

 I remind you - ONE WEEK - that's all the time you have been here. And you are considering surgery? No way my friend!

 Have a beer instead. Study the forum, and take advantage of the knowledge and experince of everyone here to help you through the process. 

There is no need to rush. Make an informed decision. You owe it to yourself and to those that love you and you love back. You may regret it if you don't. 

Wishing the best outcome for you. 

CC

 

 

 

Steve1961
Posts: 250
Joined: Dec 2017

yes oncologist recvommended surgury...he said at my age its better to take it out and be done with it..was told they reccomond radiation for older people late 60s 70s because the surgury at that age is kinda rough..gand usually its so slow growing radiation is better for them...anyway yes i have decided on ssurgury..just need tips on finding the right surgeon.. i was told he should have performed at least 500 of these  and read ever review  what else should i know about the surgeon...is robotic the wasyto go or is the old way good as well...thast all...just asking asking..like i said Stanford and UCSF are the places i will be most likely deciding on...hope i am not being a pest...hopefully i can return the favor when i am done  and help other feel comfortable like all of you guys thanks

1005tanner
Posts: 29
Joined: Dec 2017

Be comfortable with the surgeon and talk to people that have used him or know of him.

Dont be afraid to talk to several and find the one you are comfortable with if that is the direction 

you want to go in. Relax and study and ask questions .In  this forum these gentlemen have alot

of knowlege because they have lived through it.

Have a Happy Holiday and Good Luck

lighterwood67's picture
lighterwood67
Posts: 213
Joined: Feb 2018

Well, as you can tell from this site that you are not alone.  I was diagnosed officially in Feb 2018.  PSA: 4.72; Gleason 4+3=7.  Looks like you are doing all the right things.  My doctor recommended RP.  He said the radiation, hormone, beam, seediing, etc. would take a lot of time and probably a lot of visits.  I am comfortable with this doctor.  He is 63; graduated from Duke University; was over the Onocology-Urology Department at Levine Cancer Institute; performed over 1000 robotic guided surgeries.  He is a no non-sense doctor.  In my journey and choosing to have an RP, I prioritised.  First and foremost , address the cancer; 2nd address the incontinence; 3rd address the ED.  My RP occurs on 3/20/2018.  I will put my thoughts out there on having the RP surgery.  Looking for some Depends and Pads now.  Good luck to you.

lighterwood67's picture
lighterwood67
Posts: 213
Joined: Feb 2018

I had my RP at 67; Bladder Neck Reconstruction; and Pelvic lymph nodes removed (8 of them).  In my case, after the surgery and the catheter removed, my stream flow has not been that good since I was much younger.  If you need or want to take a look at my surgical procedure (robot guided assisted) please go to this post on this site.  Description of procedure RP 3/20/2018. Good luck to you.  You will be flooded with a lot of good information.  Take a deep breath and weigh it out.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

CC52 and others including myself are giving you good information, but you are in a rush to make a decision with lack of knowledge that you can regret for the rest of your life.

I strongly recommend that you do your due diligence and visit with doctors in various specialties at UCSF

Also like CC52 , surgery would be the very last treatment  I would choose, and that is only if they held me down.My first choice would be SBRT aka cyberknife. Here is something that I posted at another tread.

"I have been in an Active Surveillance program since March 2009 during which time I have been monitored for disease progression which would indiciate active treatment if needed.

In order  to make the best decision for a localized treatment for prostate cancer, if necessary, I did very extensive research to determine the success ,  along with the  frequency of  potential consequences of these treatments. My research includes reading  from this site since   April 2009 where I  read posts by men who suffered the consequences of surgery to include but not limited to incontinence and erectle dysfunction. These posts were and are frequent. There are ongoing threads at this site about incontinence from surgery, and the sub industy that developed to install the various AMS devices to correct this. Also for Erectile Dysfunction there are various devices that are installed so a man can have an erection

During the last nine years of research, I attended local support groups where I met many men who suffered significant side effects from surgery; incontinence and erectile dysfunction. In addition, I observed that many men who were treated with surgery had to have salvage radiation and or hormone treatment since many of the surgeons in thier haste to do the surgery did not order proper diagnostic tests (image) before surgery, and these men had to suffer additional treatments with other potential consequences.

 

I also read extensively on the subject to include but not limited to medical studies and books. Studies that I have read discussed the frequency of side effects from surgery which is great. Attended many lectures about treatment, where I heard from unbiased medical lecturers, such as world renown Medical Oncologist "Snuffy" Myers who were against surgery because of the severe consequences that men experience."

 

Steve1961
Posts: 250
Joined: Dec 2017

i will do that u r right I just need to calm down.in m6 head I am thinking that anytime it could go from stage 2 to 3 that’s why I am kinda in a hurry.but I will slow down a bit .get a t3 mri get results and ask about cybrtknufe and so on 

ASAdvocate
Posts: 116
Joined: Apr 2017

Steve, Hopeful and optimistic has given you very sound advice, and it is good to read that you are considering it. Also, here is an article by a highly respected prostate cancer blogger regarding age and active surveiilance.

https://prostatecancerinfolink.net/2016/07/07/can-a-man-be-too-young-for-active-surveillance/

 

 

Grinder
Posts: 441
Joined: Mar 2017

... Be sure to ask your doctor how CK will or will not affect severe BPH symptoms or chronic prostatitis. So far, I have not read in the archives anything about chronic prostatitis, BPH and CK treatments. I don't think, at first glance, that CK will help enlarged prostate symptoms at all, and the advocates of CK never mention having enlarged prostates to the point of health risk.

Admittedly, 55cc is not terribly enlarged. But that isn't a constant you can rely on in the future. Family history? Did your father have serious BPH symptoms? What does your urologist say about your future potential for BPH? 

If you get CK instead of RP, is daily Flomax in your future? A TURP procedure? I myself had all the options on the table and went with RP anyway.

If you settle on CK or other RT, keep in mind that RP is then generally ruled out. You can follow Robotic Prostatectomy with radiation, but you generally cannot follow radiation with radical prostatectomy. Read into the archives for more info.

If your doctor suggests you will not have severe BPH or chronic prostatitis in your future, then maybe CK is your best alternative. But don't let anyone scare you away from radical prostatectomy with an experienced Davinci Robotic surgeon, if there is danger of severe prostate enlargement and the accompanying urinary stricture and other health issues it creates.

I could be wrong, but I am guessing the CK advocates here did not have to deal with severe prostate enlargement, which CK can not resolve, but could take prostatectomy off the table for future treatment alternatives.

And Davinci Robotic nerve sparing prostatectomy is the way to go for any RP.

And yes, you have plenty of time to decide on the best treatment for YOUR profile, not mine or anybody else's. Best to ignore the dire warnings and get every opinion possible.

ASAdvocate
Posts: 116
Joined: Apr 2017

Grinder wrote "If you settle on CK or other RT, keep in mind that RP is then generally ruled out. You can follow Robotic Prostatectomy with radiation, but you generally cannot follow radiation with radical prostatectomy. Read into the archives for more info."

Yes, but, so what?

Salvage treatments following a failed primary radiation include cryotherapy, HIFU, FLA, SBRT, and HDRBT.  So, why do pro-surgery advocates always bring up this talking point? It leaves the misleading impression that a man choosing a form of RT is out of luck if his PCa returns, and this simply is not the case.

 

 

Grinder
Posts: 441
Joined: Mar 2017

"Robotic radiosurgery, also branded as CyberKnife Robotic Radiosurgery, is not robotic surgery. Developed by Accuray, a radiation oncology company, FDA-approved CyberKnife involves no cutting at all, but rather is radiation for the treatment of cancer. Through a series of 1-5 procedures on different days, the patient receives targeted radiation to the cancerous area. This is a minimally invasive procedure believed to limit the radiation exposure to the surrounding non-cancerous tissue through its precise ability to hone in on the cancerous prostate. A recent multi-center study of low-risk prostate cancer patients showed a 93 percent non-recurrence rate after 5 years, though the procedure is relatively new and data is limited.

In Dr. Samadi’s opinion, this type of radiosurgery has two significant limitations. First, it relies on pre-surgery CT scan data to determine the size, shape and location of the tumor. “We just don’t learn enough from those pre-surgery scans,” stressed Dr. Samadi. “What we think is low-risk, very localized prostate cancer could be more invasive, and could therefore be missed by this type of treatment.” Further, Dr. Samadi clarifies, this is radiation and though the hope is that the cancer will never return, treatment options may be limited if it does. “It’s considerably more challenging to perform robotic prostatectomy surgery after radiation, so if the cancer comes back treatment options can be more limited.”

During a robotic radical prostatectomy procedure, the surgeon uses finely controlled robotic tools consisting of high-resolution cameras and micro-surgical instruments to remove the cancerous prostate. Though minimally invasive, the surgeon is still able to clearly see the entire surgical field. Blood loss is minimal, vision is 3D and is enhanced 10x and the dexterity of the instruments allows an experienced surgeon to guide it in all directions with full rotation. For Dr. Samadi, robotics is the perfect blend of old and new. “I see robotic surgery as a great marriage of the benefits of traditional, open surgery and state-of-the-art technology,” said Dr. Samadi whose patients have a 97 percent cure rate. “Essentially, I can see and do everything I used to see with traditional surgery without risking the same traumas to the patient.”

http://www.roboticoncology.com/press-release/cyberknife-and-robotic-prostate-surgery-the-winner/

Grinder
Posts: 441
Joined: Mar 2017

That quote was published six years ago, but I mention it because you generally cannot follow up radiation with RP, so it limits your alternatives.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

After SBRT the prostate size shrinks in size due to atrophy. This was true of my friend who had SBRT five years ago. At that time his prostate was very large, if I remember correctly it was about 85cc. He is doing just fine now, and his pee stream is comparable to a fire hose stream.

Now a days radiation is very precise and effective; there is no need to do radiation after surgery since radiation alone will do the job, there is no need for surgery which is only localized in addition to radiation, since men can incur significant side effects which are cummulative. The radiation perimeter, in cases where there is a chance that the cancer is  outside the capsule, can be extended. Eventhough surgery, although difficult, can be performed after radiation,there  is no need for surgery after radiation since there are other treatments such as hormone for failed radiation treatments. Radiation cure rates are comparable to surgery cure rates with less side effects.

You quote Dr. Samadi's ( a urologist who is biased) of 5 years ago. At that time if my memory is working, Dr. Samadi and Dr. Katz who does SBRT (cyberknife delivery) worked in the same hospital in New York...I think that they did not, to say the least,  get along at that time.

Grinder
Posts: 441
Joined: Mar 2017

Thank you hopeful for the information... Though I would still research it further to make sure your friend's case is typical, and not due to another variable.

And yes, it is a old but I quoted it primarily in reference to the limitations of alternatives after CK. I am guessing CK has come a long way since the article was written as far as accurate targeting.

hopeful and opt...
Posts: 2226
Joined: Apr 2009

When my friend and I interviewed doctors we interviewed  a robotic surgeon and a radiation oncologist who specialized in SBRT. Well the surgeon said that the prostate would not atrophy and surgery was necessary for better urinary function, while the radiaiton oncologist told us , that the prostate would atrophy. We did not know which doctor was accurate. Well, since my friend had heart disease, he opted to go with the radiation.

Initially after the radiation, there was some swelling of the prostate which affected his ability to urinate. He was prescribe Flomax. After a while the prostate did atropy. so he does not have any problems with urination.

The urologist that leds a local support group that I like to attend told me that radiaiton with larger prostates are not ideal. Quite often men receive hormone  in advance  of radiation treatment, that shrinks the prostate 

CC52
Posts: 103
Joined: Nov 2013

So that begs the question: If the prostate shrinks (atrophies) following SBRT, how is the urethrea not constricted (restricted?) by the process? It seems then that urination would naturally worsen over time.

My RO was adamant that the urinary issues I experienced post SBRT were not completely "cause and effect". During my follow-up visits over the 3+ years since my treatment, he reminds me that I still have a prostate and that urinary problems could still occur with aging - again emphasizing that statistics indicate very few urinary problems can be attributed to the treatment. Sounds like he may have been covering all bases?

Regardless, the problems I had urinating (which were burning and weak stream) have all but disappeared over time. An occasional hiccup - mostly after a few beers.

  

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

CC,

My urology surgeon has a great map of the prostate and all of the associated plumbing on the wall in one of his exam rooms, and I have over the last two years asked him several questions about it.  He told me that the urethera actually does not run through the prostate gland. A section connects the bladder to the prostate, and then another section conncets the other end of the pprostate to the end of the penis.  But he said the passage through the prostate itself is pretty rigid and sort of like a superhighway entering into a cave bored through the side of a mountian.  This may explain why there was no stricture (restriction).

This is probably just more information than almost any layperson needs to know, and most pictures just describe the section through the galnd as in fact "urethera."   My doc has done well over 1,000 DaVincis and is a subspecialist in post-radiation salvage surgery, which is a fairly rare thing, so he must know of what he speaks.  He has taught urinary surgery at two medical schools also.

This is a highly detailed critique of the male ureathera and each of its many subdivisions:

https://emedicine.medscape.com/article/1972482-overview#a2

max

CC52
Posts: 103
Joined: Nov 2013

Thanks for your input Max, however can you check the link you provided? It wouldn't open for me - just a blank page.

Old Salt
Posts: 720
Joined: Aug 2014
Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

I and a lot of other people here have been having trouble ove the last year getting links to open.

I used to just do a cut and paste and it worked great, but no more.  I manually used the editing options on the toolbar here and made the link a Hyperlink, but even that won't work.

You CAN read the link by typing in the address manually. If interested in the subject, it will be worth the few moment's effort required.

max

Grinder
Posts: 441
Joined: Mar 2017

I researched this in a limited way with keywords "CK shrinks prostate" and I can't find any other instance where CK effectively did shrink the prostate through atrophy. Yes, your friend's prostate may have shrunk, but if this were a common effect of CK, it seems like it would be heralded as a positive effect of CK technology. I strongly suggest it be researched further into the archives of other medical forums and university websites to see if it does have that effect, before anyone makes their treatment decision.

If it did harmlessly shrink the prostate, then why isn't CK being used to address severe BPH symptoms regardless of cancer presence?

In the case of RP, there is no question it resolves BPH and prostatitis issues.

Old Salt
Posts: 720
Joined: Aug 2014

(Not really, because Hopeful posted the same, now that I reviewed the earlier thread).

Irradiation will kill the cancerous cells (we hope!). When those cells die, the prostate does loose the space they used to occupy. If there was a lot of cancer, one can expect to loose prostate volume (I did). And, BTW, the prostate will become softer as well.

It's my understanding that irradiation of the prostate is unlikely to improve urine flow and may, in fact, make it worse.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

grinder,

After radiation, the prostate has the texture of a used charcoal brickette -- think Kingsford on tailgating day.  My R.O. told me this himself.

Grinder
Posts: 441
Joined: Mar 2017

This is from an Ultrasound prostate treatment website...

26. What happens to the prostate after the procedure?

Ablatherm HIFU treatment completely destroys the prostate tissue and cancer cells reducing them to protein debris and non-viable tissue. Most of this tissue is sloughed through the urinary tract while some is re-absorbed by the body’s natural mechanisms of dealing with injured or non-viable tissue.

http://www.hifu.ca/prostate-cancer-FAQ-hifu.htm

Grinder
Posts: 441
Joined: Mar 2017

This is from these archives.

I am not suggesting CK is to blame, I am suggesting the improper administration of CK is to blame. And, similarly, the lesson here is that the best most experienced professional is necessary regardless of the procedure. Side effects are more prevalent when inexperienced professionals perform procedures.

My husband had cyber knife treatment last September 2011, with only mild side effects a week later. Now, more than 6 months later, he is having severe problems. For the last two weeks he has had pain , burning, urgency, and blood in the urine. He was prescribed an antibiotic and flomax for a week, which did not relieve his symptoms. Yesterday we back to the doctor. He did a cistscope to check his bladder, a sonogram, and urine test. He said that husband does not have an infection, and took him off of the other meds, and put him on vesicare. He said that symptoms are a result of the cyber knife surgery last September. He still has all of the symptoms, and cannot sleep because of the pain and having to constantly go to bathroom. Has anyone else had this, or have any advise ? Please let us know, as he is miserable. Thanks

 

The following is a response inre the side effects suffered from the procedure...

"ASTRO’s executive summary paper states: “Given that very high-dose fractions of radiation are delivered, the margin of error for SRS and SBRT is significantly smaller than that of conventional radiotherapy and therefore special attention and diligence is required. A SMALL ERROR IN TARGET LOCALIZATION FOR ANY 1 FRACTION RISKS UNDER TREATMENT OF PORTIONS OF THE TUMOR BY 20% OR MORE, AND INADVERTENT OVER DOSAGE OF ADJACENT NORMAL TISSUES COULD ESCALATE THE RISK OF SERIOUS INJURY TO A MUCH GREATER DEGREE THAN AN EQUIVALENT TREATMENT ERROR IN A COURSE OF RADIOTHERAPY WHERE A SUBSTANTIALLY LOWER DOSE PER FRACTION IS USED [IG/IMRT].”

"I have posted this info before and know it is not what you want to read but, without knowing more about your husband’s PCa history, stats, his clinical staging, the CK tx protocol used, dosing, the expertise & skill of his radiation team, including the radiation oncologist, the dosimetrist/physicist, the CK technician, etc., its difficult to know for certain whether your husband may have suffered permanent or temporary injury and/or collateral tissue damage from his CK/SBRT tx. I hope you find some answers soon, and that the symptoms are short term, treatable, and the pain resolves quickly. "

************* 

Note the words " the expertise & skill of his radiation team, including the radiation oncologist, the dosimetrist/physicist, the CK technician, etc. "

I can't help but point to one significant variable when it comes to side effects in ANY procedure... Skill and Expertise.

It is my contention that once CK is more widespread as RP is now, then less experienced and less skilled persons will administer the procedure, resulting in more side effects. 

Comparing the two procedure when SUCCESSFULLY done by expert skilled persons, they each have their advantages. If CK appears to be the recommended treatment for a particular patient's profile, then by all means, pursue that course of treatment. But the caveat remains, as it does for RP as well, get the best available. 

Once CK eclipses RP, don't be surprised if incidences of side effects increase dramatically, as the increased demand will exhaust the supply of competent professionals to administer the treatment. Then less skilled persons will be needed to meet the increased demand.

I continue to emphasize VARIABLES, which is necessary in any experiment. Everyone points to RP as the culprit, rather than consider the VARIABLES between successful treatment with RP versus unsuccessful treatment. The main variable continues to be the skill of the surgeon. In my case, everything went exactly as planned, just a little behind schedule. That is why I continue to be adamant that everyone gets the MOST SKILLED professional available, and not just condemn any particular procedure outright.

 

Steve1961
Posts: 250
Joined: Dec 2017

wow thanks everyone...i am going to have it taken out...meeting with 3 surgeons in the next few weeks...will make my decision  and do it and hope for the best....i have learned alot from all u wonderful informative folks....i know what to ask and what what to expect now...i am jsut a little frustarted at my urologist about the MRI situation...i asked him about the MRI instaed of the biopsy..he said MRI does help if something is seen then we will ahve to do a biopsy anyway  ...so now i have to wait 6 weeks after the biopsy to get an MRI....Hmmmm i need to ask my urolist why,,i guess they want the prostrate to fully heal i guess..not sure but not happyt about it...especially when i asked the assistent to set one up and she saud they usually do that first.....maybe  from my past resukts he didnt think it was necessary..still wonderinging why we didbt i will have to ask himmmmm  happy holidays and merry christmas to all

 

Steve1961
Posts: 250
Joined: Dec 2017

just wondering if anyone knows why I will have to wait 6 weeks after biopsy to get an mri done ...I think that’s a long time and all this waiting is starting to get to me thanks 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

Steve,

The wait is probably due to booking of the machine, not for medical reasons.

Six weeks is not problematic. Use the time to read and ponder.

I was diagnosed with advanced Lymphoma in 2009, all over.  It was way over two months from discovery until my first chemo began...being shuffled between doctors, tests.  There was a wait between everything.   It is not an issue.

max

Steve1961
Posts: 250
Joined: Dec 2017

not do to booking assistant said I have to wait 6 weeks for some reason ..not that there was nothing available ...I will call, Tuesday to find out why if no one knows ..thanks again 

Steve1961
Posts: 250
Joined: Dec 2017

Like I mentioned before ..I am a bit scared even though they say I am in s very good situation no one knows how close the tumors are to the margin I guess thatscnots known until after surguty so I am afraid it may be spreading ..ever since the biopsy I have had discomfort and a pain in my left cheek when sitting for a while ..sorry soo afraid it may have spread to my bones the wait is getting to me ..thanks for listening and sorry for being a hypo..

hopeful and opt...
Posts: 2226
Joined: Apr 2009

diagree,,,,,,,,,,the prostate is affected by the biopsy, and an MRI needs to wait.

Steve, you exhibit panic, and you need to calm down.....did you visit with a radiation oncologist...or are you simply trying to get the the prostate out as quickly as you can?

Steve1961
Posts: 250
Joined: Dec 2017

DID VISIT WITH RADIOLOGIST AND HE SEEMED OF COURSE VERY KNOWLEDGEABLE ALOT OF AWARDS HONOR SDEGREES  ECT..HE EXPLAINED IT ALL TO ME HE ALSO SAYS I AM IN A GOOD STATE TO BE RID OF THIS FOR GOOD....THE RADIOLOGIST SUGGESTED THAT I HAVE IT REMOVED AS WELL FOR BEST RESULTS...THEY ALL SEEMS TO THINK I CAN RECOVER FAIRLY FAST AND WELL FROM SURGURY....

Tech70
Posts: 53
Joined: Nov 2017

When I had my MRI they asked if I had had a biopsy and when I said yes, they asked how recently.  Apparently they want to wait for some period of time between the biopsy and MRI

Steve1961
Posts: 250
Joined: Dec 2017

u know some of the things u find on the net can be very scared.such as the onco type dx test....I went to the sight they asked 3 lousy questions 1 have I had a blood test 2 have I had a biopsy last 6 months 3 they asked 3 question PSA under 20 Gleason 7 Or under and the third one 30% involvement or less in Tumors  all three have to be yes...well I put no because I have more than 30% involvement ..well the results said I should be tested because I have high risk aggressive cancer .....wow I hope this is not true ...it scared the crap out of me 

Steve1961
Posts: 250
Joined: Dec 2017

wow i will tell u this waiting for MRIs  and to see surgeons is the absolute worst...thank goodness i dont drink alot because if i did i would be drunk everday,,,,sooooo stressfullll..all the thoughts.......thank goodnes for faith and prayer  and exersize...

Old-timer's picture
Old-timer
Posts: 196
Joined: Apr 2011

Steve,

The responses you have generated are overwhelming. I have nothing new to add to what I said earlier. You have heard our voices, studied the issues, and made your decision. I again wish you good luck as you proceed on your prostate cancer journey.

I think I told you that I chose prostectomy at the age of 65 in 1991. This has worked OK for me; nevertheless, I do not make recommendations to others. Everyone of us is different, and we make our individual choices. 

Best wishes to you and to all of us.

Happy New Year.

Old-timer (Jerry) 

Steve1961
Posts: 250
Joined: Dec 2017

thanks old timer appreciate the boost 

Julielynn0501
Posts: 12
Joined: Dec 2017

Hi Steve!  My husband was diagnosed about 8 months ago.  I can feel your fear and anger.  We found this group a couple of months ago and they've been great!  My husband is a "young 60" (so they say).  Surgeon told him to remove it, get it over with.  Radiation said remove it.  We actually had surgery scheduled for tomorrow, but through this board found out A LOT of information, including Cyberknife and now FLA.  So listen to all of these wonderful contrubutors and educate yourself.  The doctors only tell you what they want to do and its very frustrating.  

Deep breath.

Steve1961
Posts: 250
Joined: Dec 2017

oh I do listen to all these wonderful people 

Steve1961
Posts: 250
Joined: Dec 2017

I was supposed to have an MRI on the 15th  now got pushed back until the 22nd...tech did not feel comfortable until aafter 7 full weeks after biopsy..wow going to see 2 surgeons with having them  not seen the  MRi..which means another app with surgeons..hopefully i wont have to wait weeks and weeks for follow up app...thsi not knowing the facts about containment is getting to me..abd the wait might be 3 months after biopsy...also  should not have told anyone but family...everyone i talk to now say so when is surgury, whats,  the wait , you need to get that out, its frustrtaing as heck..thanks for listening

hopeful and opt...
Posts: 2226
Joined: Apr 2009

You will come across many civilians who do not know what they are talking about. 

Suggest that you attend a local support group, where you can discuss.

VascodaGama's picture
VascodaGama
Posts: 3033
Joined: Nov 2010

Why getting stressed by what the others say?
Disregard those comments and focus in what is important to you. Your post tells me that you are not yet totally comfortable with the situation and do not know yet the role you should take. You feel responsible.
This is absolutely normal and occurs to us all as we are dealing with something new to us. Once you get educated and understand the subject, you become more confident and start feeling better. Decisions are easier to take and that frightening of erring dissipates.

The postponement of the MRI is upsetting as the data will be necessary in the consultations. In your shoes I would call the doctor's office to inform on the postponement for them to change the appointment date. Cancer does not spread overnight and your present condition would not alter in two more months. How about preparing your self with a list of questions for the consultations? Here are some ideas for you to copy;

http://csn.cancer.org/node/224280

http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-talking-with-doctor

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

Try doing things coordinately without rushing. This is the way to confront the problem, leading to a more concrete and successful outcome.

Best,

VG

Steve1961
Posts: 250
Joined: Dec 2017

wow i was hoping to find a sight thast would help me ask all the questions i nedd to ask thanks again

 

Steve1961
Posts: 250
Joined: Dec 2017

tyhese first time visits take much longer i hear..i am hoping after forst vivit i wont have to wait long for next visit  thanks

Scumcrode
Posts: 15
Joined: Mar 2017

Steve sorry to hear. I'm 47 and was diagnosed last March. I don't have time to read the entire thread so maybe these were mentioned. My PSAs were all under 3, Gleason 3+3 and 1 / 12 biopsies +, FYI. Here's the short version: 1)OncoDX, 2)Get many opinions, 3)MRI, 4)Diet. I was told by 6/7 doctors to have the prostate removed, although I decided to do Active Surveillance. Fortunately the 7th dr I saw agreed with me to do AS. First, you can have OncoDX testing done to the positive specimens only, the cancerous portions. It is a new but regarded as a good other tool in the toolbox to predict the future aggressiveness of the tumor(s). It's probably not cheap, but the company (called OncoDX, its all they do) can evaluate you by phone to perform the test free. I make nearly 100k and qualified. It was a 2 or 3 question survey to qualify. My lone + biopsy came back as 88-93% likely to remain "very low" chance of changing into an aggressive type. It was nice to have this report on my side when choosing AS. Second, get many opinions. Like I said, it was the seventh and last doc I chose to see that finally agreed with my approach. I was doing AS regardless, but it wa such a weight lifted having a doc on my side so to speak. Before meeting him, I felt like I was pulling the weight of those 6 docs around. Third, get an MRI with endorectal coil. I'm getting one today because my PSA just went up to 4.4 after being in the high 2's for almost 2 years. Keep in mind that because I am pretty young numbers like this mean much more to me than someone 55. FYI my chosen AS doc, a very highly regarded doctor at Fox Chase Cancer Center in Philly - no slouch - isn't very concerned about my suddenly higher PSA, saying that it's not a very reliable predictor of what's going on. He is recommending the MRI with endorectal coil, to make sure there aren't multiple tumors. I know you have 2 + biopsies, but the needles can miss things. The MRI could reveal more tumors, or nothing, meaning your tumor or tumors are most likely very small. There is however a 15% chance the MRI could miss things. Again, another tool in the arsenal. I learned something new at all 7 consults, THERE IS NO SUCH THING AS TOO MUCH INFO HERE! Lastly, google "cancer diet." Yep, leafy greens, low fat, etc. and cut down on sugar and meats. People have knocked their PSAs down by 1/3 eating better. I always ate pretty well, or maybe my PSA would have been 4 when it was 2.5 at age 45. Good luck! 

Steve1961
Posts: 250
Joined: Dec 2017

I see having the onco dx test done if u choose to monitor it..makes greta sense absolutely do not want it turning aggressive while monitoring but I am going to have mine removed  for now so I don’t think I will we’d that but if things change and maybe do monitor it I will definitely get tested 

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