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Active Surveillance

Builder23
Posts: 22
Joined: Jun 2013

Please see my previous post under active surveillance where I updated info and ask for your feedback.  I did not know how to update my previous post under need help and advice.

Thanks all

Builder23

mrspjd
Posts: 688
Joined: Apr 2010

Hi Builder,

You did just fine! I personally found some of the how-to instructions on “CSN help” somewhat confusing or outdated. It just takes a little trial and error to get to know your way around the site.

The link to your original thread titled “Active Surveillance” and your original post (OP) are copied below (I bolded your update for emphasis).  Hope this helps.

*************

http://csn.cancer.org/node/264050

 

 

Builder23

Posts: 7
Joined: Jun 2013

Oct 30, 2013 - 3:23 pm

I am 74 yrs old with PC 3+3 gleason scale 6 and 7% canc in one core.  I am having the prolaris gene test done but do not have the results.  My urologist wants me to do active surveillance probably because of my age, but I am healthy and on no medications.  I want to live long enough to see my 4 young grand kids grow up.  should I get a second opinion and see an oncologist for help?  thanks.   BTW, just remembered I recently had melanoma skin cancer and lymph node removed and no cancer found.

update:Well finally got my results of the prolaris gene test.  -1.0 consistent with low risk cancer.  They staged it T1c but my Doctor said he thinks it is T2a and I agree.  It said I have a 95% chance to survive another 10yrs.  Other then that not very useful.

Do not know if it has spread already since I have had it for 3yrs without my knowledge.  Doctor says not necessary to get a bone scan or 3TMRI which would put my mind at ease.  Any thoughs on that?  At this point active surveillance only, next PSA in three months.

mrspjd
Posts: 688
Joined: Apr 2010

Builder,

Based on the stats you’ve shared to date, I don’t believe that the Polaris gene test results change any of the very good advice that you received on your previous thread.  Although, a few questions remain that I haven’t seen answered: How many biopsy cores total were taken (1 positive out of how many cores in all)?  What is the prostate volume (shown on your biopsy report usually in cc)? Do you have any symptoms, such as urinary urgency, difficulty? Have you obtained the mandatory (IMHO) expert 2nd opinion pathology analysis of your biopsy specimens (tissue) from a path lab that specializes in prostate bx pathology, such as at Johns Hopkins or Bostwick labs? Did the 2nd opinion report confirm or re-grade (up or down) your initial report?  

Once you have all this add’l info, it will help you address whether or not add’l diagnostic tests are medically indicated and whether or not Active Surveillance/Monitoring (AS/M) is an appropriate and viable protocol for you (it may well be). You’re wise to be taking the time to learn as much as possible about YOUR PCa and clinical staging before making any decisions.  This knowledge will give you the power to make an informed decision, along with your doctors, that is right for you and your QoL priorities.  You are your own best advocate when it comes to your PCa care/tx.

Be Well!

mrs pjd, wife a T3 stage PCa survivor

Builder23
Posts: 22
Joined: Jun 2013

Here is what I can add about my biospy.  12 cores sampled but one had no tissue.  1 core postive (right lateral apex) 17mm length. No cc volume found on path report.  (3+3) 6 gleason 7% of biopsy. Balance of cores benign.

No second opinion, not sure how to get sample to another path lab expert.  Mandatory (IMHO) expert, will tell my Dr I want a second opinion.

Still have urinary urgency at times and get up at night at least three or more times.

Thank you for your reply.

Bldr23

mrspjd
Posts: 688
Joined: Apr 2010

B,

Thx for sharing add'l info. Re "not sure how to get sample to another path lab expert." You or your doctor can make the arrangements to have all 12 Bx cores (benign & malignant) sent out to an expert path lab, like the one at JH, for a 2nd opinion. PJD opted to make those arrangements himself. He obtained a lab release from his (then) uro for the slides and picked them up directly from the community path lab (the local lab that did the initial Bx pathology analysis). He packaged & shipped the slides to JH per their instructions. Very easy. For a 2nd opinion on your prostate Bx slides from Epstein at JH pathology, contact them for instructions and current fee here:

http://pathology.jhu.edu/department/services/consults/urologic.cfm
 
Re "DRE not normal found a tumor which led to the biopsy." I wonder if your Bx report noted any PNI (perineural invasion)?  A nodule/firmness finding on DRE may indicate that the tumor is close to the edge of the prostate. This is another good reason to obtain an expert 2nd pathology opinion on your Bx cores--to rule out PNI after a suspicious DRE. 
 
Re "No cc volume found on path report." Prostate volume is usually indicated on the written Bx report. Please ask your uro about this. Mistakes/omissions can happen (perhaps it was left off the report in transcription). Prostate volume is an indication of prostate size & is a factor in calculating PSA density. According to one source on assessing PSA level in relation to prostate size: "PSA density takes the size of a man’s prostate into account when evaluating his PSA level. It is calculated by dividing the PSA value by the size of the prostate (as determined by transrectal ultrasound). This measurement helps doctors distinguish between BPH and prostate cancer: The higher the PSA density, the greater the chance of cancer, because the elevated PSA level is less likely to be the result of daily activities or benign prostate enlargement."  An enlarged prostate/BPH may produce more PSA & can be one cause of symptoms such as weak stream, urgency, incomplete voiding, etc. If these are issues, you may wish to research and then talk to an experienced/knowledgeable uro or PCa oncologist to see if a 5-ARI (Avodart or Proscar) or a class of drugs called alpha-blockers is appropriate for you as part of an AS/M protocol. Discuss risks and benefits specific to your dx, overall health and symptoms.
http://www.fda.gov/Drugs/DrugSafety/ucm258358.htm
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3051000/
 
If a follow up prostate Bx is indicated while monitoring on an AS/M protocol, you may wish to consider a targeted prostate Bx. Google "targeted prostate biopsy" for more info.
 
Understandably, it is normal to be concerned and you're right to be proactive, educating yourself and asking questions in order to make intelligent & confident decisions. A good builder dots all the i's & crosses the t's before taking a project forward. You seem like a good builder when it comes to managing your disease & health also. Kudos for that. There is every indication that you've got a lot of good years & building projects ahead of you, especially with those 4 grandkids.
 
Good luck and best wishes to you & yours for a Happy & Healthy Thanksgiving. 

 

Builder23
Posts: 22
Joined: Jun 2013

 Thank you for the wonderful informative reply.  I have an appointment with my url next week and will ask him about sending my path slides to JH.

for a second opinion.  I have already requested a 3t MRI/PET scan and have it scheduled.  Do not think he thought it necessary but I insisted.  After all it is my health and life.

I will look into the alpha-blockers to see if it fits as part of my AS/M regiment. 

I agree with you that I have a lot of good years ahead, I am healthy otherwise and in good physical shape, but who could perdict I would get cancer.  I am just sorry the cancer caused me to lose my FAA medical so I can not fly any longer.  Had to sell my plane, oh well my family is positive so I am in good hands.

May you and yours have a wonderful Happy & Healthy Thanksgiving.

mrspjd
Posts: 688
Joined: Apr 2010
One of our sons recently passed his FAA tests for Private Pilot, rotorcraft, helicopter. He's promised to take us for a spin. Sorry you had to give up your FAA medical prematurely, although not sure I understand why. Based on current FAA guidelines re "all classes/prostate cancer," it would seem that, with your specific PCa stats & AS/M protocol, a letter from your MD could have extended, unless there are other factors involved? I remembered reading an older CSN thread about pilots and PCa...probably too little too late, but thought the info might be of interest:
http://csn.cancer.org/node/235369
 
PJD had a similar sentiment as yours when he got the "You have PCa" news. At age 67, he was otherwise in excellent health, fit, an avid golfer & skier, low stress levels, no Rx meds, healthy diet, etc.  Nodule found on DRE at annual physical led to Bx. PSA history <2.8 so no red flag there. Guess it's true "LIFE happens when you're making other plans." After aggressive multimodal primary txs, he is healthy and feeling well, with no evidence of disease, despite a T3 stage high risk PCa dx. "May the odds be ever in y/our favor." 
 
Life goes on. Live it well. 
 
Best,
mrs pjd
Builder23
Posts: 22
Joined: Jun 2013

I have investigated what I could do to get my FAA medical back and have talked to AOPA & FAA on numerious times, there would still be a min hold of 5 years before I could even try again.  Since I recently had melanoma and now PC they informed me try again in 5 years, will see how it goes.

Glad to hear PJD is doing well.  Hope he shoots his age  from an avid golfer also.

Congratulations to you son,  tell him to continue to get his instrument rating lots of work but worth it.

Enjoy life-I am

My best to you and yours

Bldr23Smile

 

Builder23
Posts: 22
Joined: Jun 2013

Just got te results of my 3t-MRI and Pet/ct scan.  My url said it looks good but could not talk to him because my appointant was not on their schedule. (they messed up).  I was given copies of the report and from what I read, I have enlarged prostate with changes of BPH and suspected bladder outlet obstruction given the trabeculated appearance of the batter.  In addition, there is a 1.3cm area of low signal at the posterior medial midgland in the left peripheral zone, which is concerning for possible malignancy.  No extracapsular extension or adenopathy or distant metastatic disease is detected.

I was told I have cancer in the right lateral apex yet the MRI said posterior medial midgland in the left peripheral zone??  Not sure what they are saying.

Prostate is somewhat prominent measuring 4.7 cm in transverse dimension, 4.6 cm in AP dimension and 3.3 cm in height. There is some thinning of the peripheral zone. The capsule appears grossly intact no adenopathy seen.  Seminal vesicles appear grossly normal.

pet.ct scan said no evidence for any abnormal uptake in the neck, chest, abdomen, or pelvis.  The bony uptake and liver uptake are within normal limits.  I guess this is all good for active surveillance?  I am still having my slides sent to John Hopkins for a second opinon.

I have a follow up with my url on 1/3/2014.  I still have cancer but is there anything else I should ask my url?

Also is there any treatment for BPH?  I still urinate frequently.

Thanks

Bldr23

VascodaGama's picture
VascodaGama
Posts: 1517
Joined: Nov 2010

 

Bldr23

I am very pleased to read about the results of your tests. They have identified and located the cancer, which information together with the gene test result of 1.0 and the Gleason score of 6 (waiting confirmation from Johns Hopkins) can now help you in deciding on the best approach to deal with your PCa case.

There are some pathologic discrepancies in the results but I can understand them. I will post you my opinion this evening (Albufeira time). I think that you should consider the opinions of the survivors in your other thread where you have shared more details about your status. http://csn.cancer.org/node/264050

Best

VG

 

 

 

 

mrspjd
Posts: 688
Joined: Apr 2010
B,
 
Medical reports and imaging results can be intimidating to read but they don't have to be. There are some excellent/reputable PCa educational websites available right at your finger tips (your computer). This may seem like a daunting process, but a thorough education about your specific PCa dx is absolutely necessary. And, it can help allay your fears.  
 
Try breaking down your imaging report into sections and medical terms that are unclear or confusing. Then, use various search engines, such as Google, to research those terms and phrases. Some educational sites have images showing the anatomy of the prostate, lobes and zones. Other sites define medical vocabulary, etc.  You'll be surprised at how much you can learn & how better prepared/informed you'll be at your next appt. in 3 weeks. 
 
In addition to using the internet to access educational PCa websites, you can also try calling the radiologist directly to clarify issues & ask questions about the imaging report. PJD did. The discussion helped answer questions we had about his MRI report. (The radiologist is the MD that interprets the diagnostic test images and generates the report for you/your doctor.) 
 
Here are links to a few good websites to get started. You'll find others as your research progresses. 
http://www.cdc.gov/cancer/npcr/pdf/abstracting/prostate.pdf
https://www.npsn.net/about-the-network
http://www.pcf.org/atf/cf/%7B7c77d6a2-5859-4d60-af47-132fd0f85892%7D/NUTRITION_EXERCISE_GUIDE.PDF
http://www.auanet.org/common/pdf/education/clinical-guidance/Prostate-Specific-Antigen.pdf
 
Please take time to empower yourself with a good PCa education. Then, hopefully you'll pay it forward to others. 
 
Good luck. 
 
PS:  Thanks for the great advice re obtaining an instrument rating. That's the plan. 
Builder23
Posts: 22
Joined: Jun 2013

Thank you for the excellent feedback I will educate myself further and post what my results.

Merry Christmas.

B

VascodaGama's picture
VascodaGama
Posts: 1517
Joined: Nov 2010

Builder

I am impressed about the way you are leading your case. You couldn’t do better. Regarding the doctor’s opinion on the MRI I think you can wait until the next meeting. Now you can prepare a list of question including any doubts you may have regarding a therapy.
Here are some ideas;
http://www.cancer.org/acs/groups/cid/@nho/documents/document/questions-about-prostate-cance.pdf

The tests you have done are the “maximum” in collected information a patient can obtain. The positive DRE lead you to the biopsy and now the image studies are showing that the “abnormal” DRE and the high PSA (5.6 ng/ml) may be due to BPH. I think that these are all related which is confirmed by the size of the prostate (double above the normal); and the frequency in urinating may all be connected to the same diagnosis.

It seems that the cancer is contained so that any radical treatment (surgery or radiation) would have similar outcomes regarding cure.  Cool    However these can harm you and prejudice your quality of life. Your doctor has already suggested Active Surveillance and the data collected shows that he will again recommend it. In my lay opinion I believe that you could chose such a way to care for your case, if indeed the aggressivity (Gs6) is confirmed at JH. In any case you need to consult a specialist in AS to obtain a deep understanding of what AS involves. This is a “militaristic” way to care for cases of indolent cancers (like yours) that may not bother along one’s life span.   Laughing

It is true that even with all data collected no one can assure that cancerous cells of higher grade (pattern of Gr4) do not coexist. The biopsy only covers a small percentage of the prostate. Only through dissection of the all gland one could know what exist. But from the data you have shared and at your age, fit and in good health, Active Surveillance seems to be the best choice and it is what I would choose if in your shoes.  Kiss

Whatever you may decide you should try to get educated before engaging in anything. Get informed about the pitfalls of each treatment, about their risks and the side effects. You may discuss with your doctor in your next meeting about the differences between AS and the radicals and request for referrals to be assisted in obtaining second opinions for each particular treatment

You will see your grandkids growing and getting old.  Innocent

Best wishes.

VGama  Wink

Builder23
Posts: 22
Joined: Jun 2013

Vgama,

You are so helpful and knowlegdeable.  Your post are always on target and of great assistance.  Thank you so much for responding you and mrspjd keep me going in the right direction.

BTW, just got hit with a tornado in my area and will be keeping busy cleaning up the mess.  No injuries just a lot of cleanup and repair, just what I need.

 

Bldr23

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