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I received my second lab report from John Hopkins

mcin777
Posts: 33
Joined: Feb 2013

My first lab report from biopsy done in January of 2013 read as follows:

Healthtronics Lab

Base     Adenocarcinoma     7(3+4)     Tumor 20% and Length 4.2mm

Mid       Adenocarcinoma     6(3+3)     Tumor 50% and Length 11.5%

2nd Opinion

John Hopkins lab
3 + 3 = 6     Discontinuously involving 30% of one core of the total fragmented specimen.

3 + 3 = 6     Discontinuously involving 90% of one core.

 

Not sure now whether a 2nd opinion that I have scheduled with another urologist is necessary. What do you all think?

Not matter how you slice it (pun intended) I have cancer and short of the Lord healing it I need to get it out of there.  It would seem that the final decision I have to make is what procedure will I opt for.

Any encouragement or counsel and even opinions are all appreciated and valued.

Jim mcin777

janei1
Posts: 18
Joined: Dec 2008

Hi ya 

I have bee n lurking here for about 5 weeks. My hubby had a PSA 8 so had a biopsy which showed cancer. Don't have all the details but it was moderately aggressive with a Gleason 7 3+4. We visited a radiologist and our two options were Davinci or radiation. We  struggled with this for a while and decided on surgery.  The reason we opted for surgery was because if it wasn't contained we could do radiation and we would not have that option with radiation. We felt like it was a one shot deal. I know there was probably other treatments after radiation but this was the way for us. After all the bone scan and MRI etc hubby had surgery last thursday the 20th came home on the 21st, had his catheter out today and was told all pathology was negative. He had no pain and is feeling great. The reason I am telling this is mainly to let you know what a great feeling it was today to hear that word negative and we would not have heards that with radiation. For us we feel we made the right decision.  Good luck my friend.  

Old-timer's picture
Old-timer
Posts: 128
Joined: Apr 2011

Based on your readings, I see no reason to rush and I know many reasons that you should take time to learn more about availabe options. I understand your reasons for wanting the cancer out. Whether you opt for surgery, radiation, or another treatment you are likely to end up with unwelcome side effects. With your readings, watchful waiting, at least for several months, is certainly an option you should consider.

Your age is an important factor.

My Gleason was also 3+4 = 7. I had surgery in 1991 at the age of 65. I am in reasonably good health at age 86 and the cancer is in remission.

In addition to the surgery, I have undergone radiation and hormone treatments. The cancer has been in remission twice (1991-2004) and 2008-2013. I have experienced very little pain and not much discomfort because of the cancer. But I have learned first hand the meaning of ED and incontenance. As long as I am leveling with you, I wish to stress that I have had a great life during the nearly 22 years of living in the shadow of prostate cancer. I feel very good and I am a happy camper. In a strange sort of way, I believe my life has been richer since the cancer showed up. It causes one to be more cognizant of what is happening.

I hope this is helpful to you and I sincerely wish you the best.

Jerry

 

 

ob66
Posts: 218
Joined: Apr 2010

We all hope to enjoy the success you have. I was 4+4 post surg and followed the same aggressive treatment you did and have had great results so far, four years out. Congrats to you, and keep it up....

hopeful and opt...
Posts: 1359
Joined: Apr 2009

I am glad that you had a world claaa pathology opinion. pparantly you were fortunate enought to have a downgrate in Gleason( are there any 3=+4=7 still reported?

In the last thread that you posted, you wrote, "The lab reported back that 4 Biopsy cores tested positive for cancer", so I hope that you can clarify where you stand. Above you talk about two cores. 

In your last biopsy how many cores were positve? What was the Gleason? What was the percent involvement of each core, and where was it?

In your previous biopsy, what was the Gleason?, Where was the core and what was the percent involvment?

mcin777
Posts: 33
Joined: Feb 2013

Hopeful and Optimistic,

I m sorry, I did not mean to not answer your question.  Here are the findings>

John Hopkins was the lab I had my slides sent to for a second opinion.  Here is their Interpretation and Diagnosis:

1)  Prostatic Adenocarcinoma, Gleason Score 3+3=6  discontinuously involving 30% of one (1) Core of the total fragmented specimen.

2)  Prostatic Adenocarcinoma, Gleason Score 3+3=6  discontinuously involving 90% of one (1) Core of the total fragmented specimen.

3-6)  Benign prostatic tissue.

hopeful and opt...
Posts: 1359
Joined: Apr 2009

 

The reason that I am askiing these questions is that there is a protocol for Active Surveillance with delayed treatment. It varies somewhat by institution and the judgement of the doctor, but at Johns Hopkins the crititeria for acceptance to the AS program is for a biopsy of say 12cores, is to have two cores or less  positive with less than 50 percent involvement in each; a Gleason 3+3=6: a PSA/Prostate size ratio of less than 0.15 and a PSA of less than 10.

Now on one of your cores that is positive,  there is a 90 percent involvement which is higher than this guideline; if the cores confirmed at Johns Hopkins are the only cores dectected, I would speak to an EXPERT for an opinion of your condition and if it is advisable for you to enter an  Active Surveillance protocol. Johns Hopkins or another major institution near you have experts about the active surveillance program.

I believe that you said that you had another biopsy as well that showed positive cores, Was tha positive cores in a different location in the prostate? What was the involvement?  In my opinion this is critical information to your treatment decision. If there is more positive cores in a different part of the prostate , this will indicate more wide spread cancer , and will probably lead to an Active Treatment.

 

mcin777
Posts: 33
Joined: Feb 2013

If it is true that one cancer cell escaping from the prostate means never being cured then I don't want to take any more risks.  I want it removed. Both Drs that I consulted with said that June was the latest they would wait.  I feel like I have an IED inside waitig to go off.

Jim

hopeful and opt...
Posts: 1359
Joined: Apr 2009

Your feelings are natural. Wne  a person is diagnosed with prostate cancer, itis a natural instinct to want it out of our bodies. To distance ourselves from it. HOwever there are a large percent of men with low level prostate cancer whose cancer will never leave the prostate. These men will die with the disease; not because of it. So these type men choose the " active surveillance protocol" so they may avoid anypossible  side effects of treatments which can be severe. This is considered a valid treatment decision. This it the treatment that I have choosen. I am in my fifth year now. If you click my name you can see how I have been treated, how I stand and informaton about this treatment type.

For those like myself who are closely monitoree, studies have shown that those who experence prostate cancer progression, the same treatment can be still be choosen as originally whould have been with similar outcome.

Not saying that you qualify for AS since the involvement of one of the cores is high and only six core were take, of which 2 were cancerous.  We still do not know if you had a seoond biopsy with cancer found in a different part of the prostate

On the other hand , be cautioned that the urologist(s) that you have seen can be biased since they can have an interest in their treatment type and can benefit from performing a surgery. The comment that was made to you about one cancer cell in my opinion are made to evoke an emotion ressponse to treatment.

Not saying that you should or should not do a surgery, but I am saying that you want to speak with an expert in AS, who only does AS for patients and will not gain from performing aan active treatment type .

HOpefullly others at this site who are very knowledgeable will list the pro and cons of various active treatments for you to consider.

 

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

Jim,

So sorry to read of your diagnosis but the 2nd opinion from Hopkins is really good news as others have pointed out.  You've been diagnosed with a very low risk prostate cancer that may be indolent and never pose a risk to your health.  If you're worried about even a single cell escaping (which is probably not a problem at all) what about when the surgeon cuts out your prostate and potentially releases millions upon millions of cells?  Prostate cancer doesn't need to travel through the blood stream.  The lymph system is another favorite way in which prostate cancer progresses to other organs.  Random cells that may escape through a biopsy, for example, are most probably easily handled by your body's immune system.

In any event, I do hope you seek second opinions from specialists who can explain Active Surveillance which may well be the most appropriate protocol to follow at this point.  There are other curative treatments, such as radiation, that pose much less risk to your quality of life following treatment.  Whichever course you decide upon make sure you thoroughly understand the potential side effects of surgery which include very real risks of permanent incontinence, ED, and other risks associated with major surgery.  

Whatever you choose, good luck and best wishes for a successful outcome.

 

K

 

 

 

mcin777
Posts: 33
Joined: Feb 2013

Kongo,

Thanks for your input.  There are a lot of strong opinions/beliefs regarding what to do and what not to do.  I appreciate hearing them all.  Having this forum is really a great help.

I have heard that with radiation, there is great risk of permanent damage to the bladder and rectum.  With robotic surgery there would be no injury to those places.  With one of my cores being 90% cancer,,,,it seems that I would not be a good candidate for active surveilance.  Agai, that is what I have been told by the two doctors that I have seen.  I am still in a bit of a quandry.  I will keep doing research but most likely will try to have surgery sometime in June.

Where have you read that cancer cells are released by the millions during surgery?  I would appreciate reading up on that.

Blessings and thanks,

Jim

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

Jim,

 

Not sure who is telling you that radiation causes "great risk" to bladder and rectum.  That may have been the case when Marie Curie was messing around with itin her lab but things are much, much different now.  I had a type of radiation known as SBRT (sterotactic body radiation therapy) delivered by the CyberKnife system.  This process delivers sub-millimeter accuracy and the radiation is completely confined to the prostate and margins are established to prevent radiating adjacent organs.  While there is risk with any medical procedure, the risk of damage to adjacent organs is significantly lower than risks posed by surgery.  Talk to a radiologiest and get the facts from an expert.

Regarding the spillover of cells during surgery.  Taking out the prostrate is not like unbolting a carberator from your car.  The prostate is intricately tied to the rest of your body through the blood stream and lymphatic system, as well as being physically attached to the bladder.  When they cut it out there is A LOT OF BLOOD.  In fact, a little know fact about prostate surgery is that many men require additonal blood because of the loss during surgery,  Ask the urologist surgeon who is pushing surgery on you.  If the surgeon should cut across a cancerous tumor during the removal there's going to be a boatload of cancer cells dumped into your blood stream.

You can't look at prostate cancer treatment options like bumper stickers.  All of them are incredibly complex and each have pros and cons.  You might want to read a Gray's Anatomy to learn about how the prostate is connected to th rest of your body.

 

Good luck

 

K

VascodaGama's picture
VascodaGama
Posts: 1594
Joined: Nov 2010

Jim (mcin777)

I agree with Old-timer in suggesting you to not rush. You have cancer and you want to do something but you are not totally set yet in a treatment, however convinced that surgery may be your best shot.

Hopeful is recalling your attention to the fact that your JH report do not indicate that they have analysed (or have not received) all cores of your latest biopsy (four out of twelve needles positive with Gs 7). In other words the Gleason score of 7 could have been an over diagnosis (common case) implying you to rush.

Your first doctor recommended you Watchful Waiting and you have been on such “stand still” status in the past 16 months (since diagnosis in October 2011). You could continue your WW or take the “pole position” and start a radical.

My opinion is that you got time still to wait or to prepare a better understanding of your cancer status. Better diagnosis leads to better decisions and treatments. You could try now to locate the cancer with additional tests. Image studies are not very reliable when the level of PSA is lower than 10 but you could try to get it done with the latest equipments (higher resolution) and techniques (contrast agents). These studies will serve you now and in the future as reference information for comparison. A colour Doppler may also be helpful to verify for blood “activity” surrounding your prostate (angiogenesis).

You could also get a molecular profile of your cancer cells in case you need continuing salvage treatments (common too) with drugs in case of failure of a radical.

 

An important aspect to consider is the trust we put on a doctor and the facilities. You need to investigate on the type and scope of “after service care” they provide in case things go wrong too.

Whatever you choose will be the best. Discuss with your wife about the risks and side effects of the treatment and trust yourself. You will not regret it latter.

 

Wishing you peace of mind.

 

VGama

JEHJR's picture
JEHJR
Posts: 25
Joined: Feb 2013

Cool5 months out after a date with the robot and PSA undetectable. Started surgery 9:00am in room wide awake 1:pm and home 24 hours later. Walking 2 miles a day after catheter was removed. no more TENA Guards 3 months post op. Had erection with catheter still in place, so no problem there.

Age 58, 3+3, 1 20% needle core after 25 biopsies. Good physical shape and never have had a regret.

 

Good luck and God Bless

hunter49
Posts: 204
Joined: Oct 2011

That is good news.  The 90% involvement is probabaly due to the way Hopkins calculates the volume.  Example if core is 2 cm and there is 20 mm at one end and 20 in the middle most places say it is 40% involvement but Hopkins says it is probably in the center so they measure from the begining of core to the end of the other spot identified in the same core so assume there is 40 mm between the 2 spots the percent would be 20 + 20 + 40 +80% involvement.  However, a 3 + 3 is good.  Good luck I personally would do active survailence for a while with those numbers

 

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