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Waiting for Surgery

jculha
Posts: 11
Joined: Apr 2010

I was diagnosed yesterday with prostate cancer and scheduled robotic surgery on June 22nd (first available date). I am concerned about the ten week wait. Does the cancer grow that slowly that waiting is not a problem? My brother recently passed away from prostate cancer that metastasized to his bones, so I am very concerned that my cancer surgery take place quickly.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Can you share your biopsy results? Also there is a way to try and determine the agressiveness of the cancer and determine also if it's escaped the capsle...not fool proof but more tests will give you more information and none of the tests will affect the wait time from the biopsy.

Randy in Indy

Olee's picture
Olee
Posts: 97
Joined: Nov 2008

I understand your concern to the highest degree. Your scans and PSA levels are a determination as to the time frame and the window of when to schedule surgery. I'm sure if your stage and scans were a concern to your doctor, he or she would treat you accordingly. It is a slow growing cancer and your test can give you more information. I had surgery three months after being diagnosed and my scans and stage were not of a serious level.

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Kongo
Posts: 1167
Joined: Mar 2010

Why are you making this decision so quickly? Have you considered any of the several types of radiation treatment (seeds, XBRT, proton therapy, Cyberknife, etc.), HIFU, cryosurgery, or active surveillance? If it was an early stage diagnosis (Gleason <7, PSA <10, relatively low involvement on biopsy cores, and Stage T1c) you likely have plenty of time to make an informed decision. If it is an advanced cancer or has spread outside the prostate, why would you do surgery anyway? Surgery may indeed be the right option for you but there are many, many other options that you should consider before making this irreversible decision so quickly.

Most urologists are surgeons and studies indicate that they reccommend surgery 93% of the time. Radiation oncologists reccommend radiation 87% of the time. Both therapies show virtually identical long term survival rates but with potentially significant side effects and impact on lifestyle.

As Randy said, the specifics of your diagnosis gives better insight into what your options might be? Can you share your Gleason numbers, the number of cores that were positve, the stage, and your latest PSA?

jculha
Posts: 11
Joined: Apr 2010

I made the decision based on my urologists recommendation. My cancer was diagnosed at the Mayo Clinic. I was being seen originally for urinary problems and as a result of tests related to that problem, my prostate was found to be enlarged and not symetrical. A PSA in January was 3.9. I went to TX for a few months and on return did a repeat PSA which was 5.5. A biopsy was done with 12 samples taken. Only one of the samples had a small area of cancer which was rated 3. Im not sure of all the terms being new to this. The Gleason rating was 3+3=6. My treating urologist immediately introduced me to a colleague who does robotic radical prostatectomies. I was led to believe that the other options were not as reliable in getting rid of the cancer and that these treatments were more likely to have unwanted side effects. I am aware of the side effects of radical prostatectomy. Like I said, Im new to this and have a lot to learn. My main concern is that the cancer not metastasize. So, I am assuming that the best way to address that concern is with prostatectomy. I am 66 and in reasonably good health and want to be around for a long time. I watched my brother fight his cancer for almost 6 years and want to avoid that if possible. I dont have any other statistics at this time.. Monday, in two days, I will find the results of my bone scan. I am aware that there is a way to see if the cancer has spread by examining lymph glands. Not real familiar with that procedure or if it is advisable. Right now, I am going on the advice of my treating physicians at Mayo.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

I certainly understand that you want to follow the advice of your doctor and avoid the experience your brother had to go through. The cancer you described fits the profile of an early stage diagnosis and has probably been growing slowly in your prostate for years. Statistically you likely have a less than 1 percent chance of detecting the cancer outside your prostate with the bone scan. Statistics show that radiation, surgery, and active surveillance all have about the same ten year survival rates but there is a significant diffence in potential side effects. At 15 years surgery seems to edge out radiation and surveillance by a few percentage points but all of them are above 80%. You have plenty of time to make an informed decision and not just go with the initial reccommendation of your urologist. Please consider a second opinion and talk to a radiation oncologist and investigate some of the new radiaton techniques such as Cyberknife and Novalis Tx. Another radiation treatment that has had excellent success in treating prostate cancer is proton therapy which uses proton beams instead of X-rays.

There are plenty of good posts on this discussion board where many men have shared their decision process after having been in the same place you are. Their candid discussions about doctors, side effects, potential changes to urinary and sexual function, and long term success are very insightful. Take the time to read them and ask questions.

At the end of the day this is a decision you alone have to make and one you will live with for the rest of your long life. If you had an air conditioner or transmission on your car malfunction wouldn't you get a second opinion before shelling out the money the first mechanic said it would take to fix it?

There are several books available in your bookstore or from Amazon.com that provide a wealth of information about PCa and the pros and cons of each option.

You may end up deciding that surgery is the best option for you. Many men who post here have made that decision. But at least when you make your final decision, make it fully informed after exploring all your options. You don't want to wonder three months after surgery whether or not there might have been a better solution for you.

I am 59. My PSA was 4.3 after rising from 3.1 in 2008. I had 1/12 biopsy cores positve for cancer with a Gleason score of 3+3=6. All of the several physicians I have talked to since my diagnosis a few weeks ago have assured me I have plenty of time to make a decison and I am reading books, clinical studies, and talking to other men who have been on this road before us. I haven't yet made a decision but surgery is not an option I am likely to choose (at least at this point in time) given the other treatments that are available the seem more attractive to my view of qualilty of life and career goals. It is a deeply personal decision and I would never second guess anyone on which treatment they choose...as long as they did it with their eyes wide open. Like you, my urologist reccomends surgery but fully supports me searching out second opinions and investigating different options.

Good luck.

hopeful and opt...
Posts: 1363
Joined: Apr 2009

Basically the american urological association does not recommend a bone scan for those with gleasons under 8...........the likelyhood of it spreading to the bones is very small....however that are many doctors who order the test since it is a money making one.......in my opinion, of course not being a medical professions the MRI with a Spectrocopy is the prefered test.......most hospitals do not have the equipment to run this test ...only some of the major centers are able to do the test.

Ora

jculha
Posts: 11
Joined: Apr 2010

Thank you for sharing your insights and knowledge with me. You have given me a lot to think about and opened my eyes to some alternative treatment methods that I was unaware of. I felt a little rushed by my urologist and the surgeon in regards to scheduling my surgery but I was somewhat influenced by the Mayo Clinics reputation for excellence and went along with their recommendation. I know that there is certainly a built in profit factor at work here as well. I will investigate the options that you presented and any others that I come across and it may well be that I will cancel the surgery appointment if I can be convinced that other treatments are as effective. I have also scheduled an appointment with my personal care physician for an opportunity to get his opinion regarding which treatment I will ultimately choose. Thank you so much for sharing and caring.

hopeful and opt...
Posts: 1363
Joined: Apr 2009

I was diagnosed with prostate cancer, at age 66 which was last year. My numbers were very similar to yours. I saw a radiologist who told me that I had to have radiation within 5 weeks or else. I then went to UCLA, saw a world class surgeon and an expert's expert with prostate cancer, who is an honest person; after reading posts on this board and getting around at support groups etc. I have found that the vast majority of doctors are financially motivated first.

Anyway this surgeon told me that I was a perfect candidate for active surveillance........so far I have been on active surveillance (watchful waiting for one years). There are no side effects with active surveillance. I plan to do this , hopeful until I die, or if my numbers change.....my cancer is being closely monitored

Below are my numbers, tests that I have taken, also a study that was done that confirms this treatment method, and a description of the major tests that I have taken.

Good luck
Ira

Active Surveillance
Diagnosed 3/09 for 66 birthday
By chance doc found a bump in the cavity , not on the prostate(which turned out to be non cancerous)
PSA's had been at 2.26/2.27 for a few years
Biopsy 3/09 Gleason 3+3=6 2 of 12 cores positive- 5 percent involvement in each
second opinion john hopkins
4/09 MRI with spectroscopy, no nodule involvement, staged t1
Aureon molecular test on biopsy, 97 percent chance will not progressin next 8 years
PSA Jan 2.2, JUly 2.5, November 2.6, February 2010 2.0

Here are some results of Lawernce Klotz,MD, well respected
new
active sureilance expert

protocol:

PSA and DRE every 3 months
Prostate ultrasound every 12 months
Repeat biopsy at month 12 and 36

After 8 years:

- 55% remain untreated with stable disease

- 36% decided to have treatment(eventhough they did not have progression)

- 9% treated with surgery or radiation for increase in psa or gleason score

- none have metastatic disease
< 1% men died of prostate cancer

---------------------------------------------------
Analysis of Bill Axelson by Lawernce Klotz, MD
Journal of clinical Onchology 2005

. lower gleason
. less than 1/3 cores and none >50%
. PSA < 10 and not rising
. PSA density < 0.15
. no palpable diesease
. early treatment for any progression

FOR LOW RISK, 100 SURGERIES WILL SAVE 1 LIFE 10 YEARS IN THE FUTURE

What types of treatment(s) have occurred?
In your situation of "Active Surveillance" where you have a small amount of cancer within the prostate capsule, you will would want to know if the cancer is aggrssive and would rapidly grow, and spread outside the capsule, or non aggressive, that your cancer has a very low chancd of growing. This can be critical to a treatment option decision.

There is a molecular test performed by a company Aureon, where they , I guess take samples from the parafin blocks from your biopsy and look for aggressive tumors...they then mathematically compare it with other factors such as PSA, gleason, etc to approximately 1000 men who have had radical protectemy, and come up with the likelyhood of the the cancer progressing 8 years in the future.

But be cautioned on the following; there is a sensitivity of 74percent and a a specificity of 64prcent. What that means is tat among 100 bad tuors, for example, they only can identify 75 of them. And among 100 good tumors, they identify as bad in 36. to be honest this is notmuch different than achieved withjust your psa and gleason and percent tumor.

I believe that you can contact Aeuron www.aureon.com or 1-888-797-7284

-----------------
MRI

There is an MRI scan for prostate cancer that is done with a special coil in the rectum. This are certain major hospitals that have a Tesla magnet. There is a 1.5 Tesla magnet, the effective resolution is limited to tumors 0.5cc or larger. There is also a 3 Tesla machine which may have a bit finer resolution.

The most effective MRI for the prostate is called a MRSI (MRI/MRS) and includes the ability to identify cancer metabolites using spectographic analysis.....Basically using the spectoscopy with the MRI provides more accurate results, both the MRI and the spectroscopy are done at the same time.

The MRI is generally covered by insurance, however the spectroscopy is considered investigational and is not covered by medicare which I use.

The test indicates if there is any nodule involvement, if there is involvement in one or two lopes , wll show size of prostate, any evidence of extracapular extension, will stage your disease.

Swingshiftworker
Posts: 658
Joined: Mar 2010

Asked my urologist at Kaiser SF if they used an MRI w/Endorectal coil to determine if the cancer has spread beyond the prostate capsule and was told it was not effective, which is contrary to what I've read. Didn't ask him about MRSI, but I expect his answer will be the same because he has dismissed all of the alternative medications, treatments and diagnosis techniques that I've asked him about, which has made his "advise" pretty useless to me.

That's at least one of the reasons why I'm switching from Kaiser to Blue Shield shortly. I've received pretty good medical care from Kaiser in the past, but, in this case, they I do not feel that they are serving me well in the diagnosis and treatment of my prostate cancer and hope that UCSF (a Blue Shield HMO provider) will do much better.

hopeful and opt...
Posts: 1363
Joined: Apr 2009

I found them to be good as long as you are relatively healthy , and proactive in getting the various services that you need.....when I turned 65 and was eligible for medicare, I choos blue cross ppo as a secondary insurance, so for the most part I can go anywhere for treatment. .....I don't know the limitations of blue cross hmo, and how it compares to the ppo option but from what I hear UCSF is an excellent institution that treats prostate cancer........if I remember right their MRI machine is a 3.0, and is better than the 1.5 machine at UCLA where I am being treated....The impression that I got from my doc at UCLA about the MRI combined with the spectrocopy..........is that as a diagnosis tool he thinks very highly.

My thoughts are different than yours about alternative medicine,not saying that you are wrong or right or I am wrong or right, but who knows, you might become lucky........I believe that we have to do our best, then hope for luck.

Ira

TonyJr
Posts: 33
Joined: Feb 2010

Jculha,

I do understand your plight, my doctor waits 12weeks from biopsy date to do surgery. I've been waiting that long, I just found out about my PC this pass December 09'. I had a PSA score of 7.3, a month later 7.2 and a month after that 6.3...I wasn't sure which direction to take but as my friends and colleages advised me I stil had a 4 out of 12 core positive with a gleason score of 3+3=6, therefore I know cancer is there. So off to surgery I desided to go, some of my friends are radiation oncologist and they all advised me to get the Da Vinci because of my age. I am 44 years. My surgery is in 2 weeks, I just got married yesterday and I'm trying to have a baby...I have 2 more weeks (April 30th to be exact) before invitro will be my only recourse. So like everyone before me has said you have time, my surgeon said I had at the least 6 months before I really had to make a move one way or the other, but I'm sure like yourself, once finding out about this I wanted it out like yesterday. So again you have time just get informed, your in the right place everyone here has been a great aide and overwhelming support of information.. take care and I wish you the best in your treatment plan. Always feel free to ask me anything, anything I can do to help please let me know.

Tony Jr.

jculha
Posts: 11
Joined: Apr 2010

Thanks Tony, I just watched my brother go downhill for six years and then die from PCa. It's not the way that I want to go. My dilemma seems to be this: the cancer can metastasize out of the prostate. My brother had a normal psa on an annual checkup. The next checkup one year later showed a rise in his psa. He was subsequently diagnosed with PCa and had his prostate removed. Following the surgery, he found that the cancer had migrated to bone cancer. So, I have to wonder, at what point prior to his prostatectomy did the cancer move from his prostate gland? Was it a month, six months, or a year after his psa rose to a level of concern? If the cancer can migrate in that time span, it seems like there is good reason to want to be rid of it asap. Does that make sense to you?

TonyJr
Posts: 33
Joined: Feb 2010

I'm so sorry to hear about your brother...theres so many variables with PC that its sometimes hard to pin things down. What I do know from experience is after my biopsy my doctor ordered a bone scan and that came up clear, thank god....can't tell you what that experience was like while waiting for my results. After that came back negative I saw my radiation oncologist friend and he advised me that do to my age(44) Da Vinci would be the way the to go. So in your case depending on what you've done thus far and what treatment plan your leaning towards, your doctor and test results will assist you in determining your active approach. I would suggest you take an active approach instead of reactive, (Investigate and ask your doctor lots of questions about any and everything in your case), everyone on this site has helped me immensly with questions and answers as to what might and can be the best way to approach my situation, but I would start by asking your doctor about a possible bone scan or MRI that can tell you better if your cancer has spread to the bone, but again depending on your Gleason score they may feel its not necessary, so don't be discouraged just keep asking informed questions. At one time a had to change two urologist before I got the one I'm presently with so be vigilante. I wish you well and please let me know if I can be of anymore assistance. We're all here for you BRO!!

TonyJr.

jculha
Posts: 11
Joined: Apr 2010

Just got the results of my bone scan yesterday and it was negative. Still leaning towards DaVinci surgery which is what my docs at the Mayo Clinic have advised. I will discuss this with my Personal doc on Friday. I have investigated other options and am not convinced that they can guarantee the same outcome as surgery although they do have fewer side effects in most cases. Thanks Again and best of luck to you too Tony.

chitown
Posts: 90
Joined: Mar 2010

I am having my surgery almost 4 months after the results. The purpose is the get the mind and body tuned for the date. I went through the same deliberation and talked to multiple urologists and oncologist. My gleasson score is 3+3 and I am at relatively young at 48. The guideline is within 6 months. In reality the docs dont know how the cell moves but they know it is slow moving process. The main thing is your comfort and you stage. Despite all of this the key is getting your body to be a top athelitic shape and mind tuned. If that takes some time then it is worth it

jculha
Posts: 11
Joined: Apr 2010

I strongly agree. Following an exercise stress test last week, I made the decision to get into good aerobic condition pre-surgery. I did okay on the stress test but okay is not good enough imho. Im okay with all of this psychologically. Thanks for your input..Best of Luck to you. Hang in there.

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