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Need your thoughts.

Builder23
Posts: 29
Joined: Jun 2013

I had a prostate biopsy october 2013 and was told I had pc in one core 7% gleason 3+3-6. Since that time I have been doing active surveillance for a year with psa fluxuating between 4.11 to 5.73.  BYW I did send my lab to John Hopkins for a second opinion and they confirmed the results.

Here is my dilemma,  my urologist suggested I have an other biopsy done because my mri showed other areas of suspected cancer.

I elected to have an Targeted fusion biopsy done at the Lakeland Regional Cancer Center.  I had a 19 needle biopsy done and they found no cancer.  I had the report sent to my urologist and asked for an appointment to discuss the finding, his office was suppose to set me up wiht an appointment but I have heard nothing for several weeks now even after repeat calls for the appointment.

Am I safe to assume I have no cancer or did they miss the tumer I was told I had?  Maybe I should find another urologist who cares.

Any feedback would be greatly appreciated.

Ernie

 

 

 

 

 

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

Make an appointment to see the doc.(I personally would call the docs office, get someone on the phone and do not hang up until an appointment is made, or ask to speak with the doc.)

Get  a copy of the MRI findings and the biopsy report.

What 3 dimensional biopsy machine did they use.

Were all cores targeted, or some targeted and some random.

Did the multi-parametric use a 3T or 1.5 magnet?

......................

By the way, only a biopsy can determine if cancer exists....a tumor or growth within the prostate can be non cancerous.

 

 

 

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

Why do you think your urologist is dragging his/her feet? Do you have confidence in him/her? If not, changing urologists seems to be appropriate.

Sounds as if you are free of cancer. But if you are uncertain about that, you may wish to find firm evidence to that effect. I understand that you need to know so that you have "peace of mind."

Good luck.

Old-timer (Jerry)

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Builder 23,

I have an older (72 now), close personal friend who was diagnosed several years before me with Pca (I am now 58). He had one core come back positive four years ago, and then a biopsy with NO (zero) cancer in any of 12 cores two years ago.  His urologist assured him that he HAS cancer, but that the second biopsy missed it.  I go to the same urological group that he uses.  Obviously, it is a very small tumor. He is on AS currently.

If you had a biopsy positive for cancer, confirmed by Johns Hopkins, then you need to assume that you indeed have cancer.  It may be small and indolent, but "false negatives" are not uncommon. It is much safer to assume the worst, than to believe that a John's Hopkins lab result was "wrong."  Proceed on the assumption that there is some cancer is what I would advise. 

The good news is that if it is very small and indolent, it is most likely very treatable/curable.  It may not be aggressive or life-threatening, but is is there. 

I have also nursed two friends who died with Pca.  It is better to do more than to do less is what I have learned, after going to their funerals.  One had a PSA of over 1,000 at the end.  Both died with agonizing bone tumors.   I talked to their oncologists, and learned a good bit from meeting with them. 

Doing something is better than doing nothing.  Every time.

max

(awaiting surgicial removal, Jan 28, 2015)

 

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

 

Many men are over reactive and want to do something when they are diagnosed with low volume, low aggressive prostate cancer, and over treat, and a number suffer major side effects from these treatments. This is very typical. About 70 percent of the time, these low grade cancers are indolent, that is not likely to spread

A lot of times, the first reaction of a man who is diagnosed with low volume, low aggressive disease is shock and depression , and wants to eradicate the cancer. Unfortunately some of these treatments are drastic, and can cause major side effects 

Now a days ' Active surveillance with delayed treatment if necessary" is considered a valid treatment option. Major centers of excellence endorse and provide this treatment. option. I for one, am following a protocol at a major center of excellence , for almost 6  years now. Even if at some time I will have to choose an active treatment, this choice of treatment has been successful for me, since I have not experienced any side effects from an active treatment to date. I may still be able to choose from the active treatments that are currently available, and are developing, to excellence in the future,  such as Focal Laser Ablation with MRI guidance. 

During the time of my AS, there has been progress, in monitoring the disease, and there have been  refinements to active  treatment choices .i.e. SBRT was in it's infancy when I was diagnosed, now excellence in facilities and personnel have been documented.

Studies have shown that a man who is in an valid active surveillance program can still choose his initial treatment choice if desired without any negativity to the results of treatment.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Regarding your wait for a Consultaton appointment:

Ernie,

Doctor response times vary, and for differing reasons. When I was first diagnosed with highly advanced lymphoma in 2009, it took about three weeks before I saw my first oncologist, and about two more months before chemo began. In other words, about three months from diagnosis to treatment beginning.   Understand, most cancers are not as indolent as most prostate cancers are, so this is very unnerving.  What I did not have to wait for was an appointment.  If I were unable to get any response at all from a practice after "several weeks," I do indeed think I would go elsewhere, insofar as insurance terms allow (many people have few options in these matters).

Before "walking" I guess I would give it one more try. Large practices always have a dedicated Scheduler. I would speak only to the scheduler, and demand an explanation. Also, I NEVER leave voicemails for any reason with any one (medical or otherwise). 

Do not assume that your urologist has received the second biopsy. 

A friend with late Stage 4 Pca was in acute care three years ago for a variety of blood chemistry problems at a major teaching hospital. This was the same facility in which he had received all of his cancer treatments for the previous 12 years (R.P., R.T., H.T., chemo, and newly approved chemo [Jevtana and another]).  All of their records were digital (computerized) from a few years earier.  After ten days as an impatient he was about to be discharged, and I asked the RN who was giving him his Discharge Orders if he needed to see his oncologist soon, and she asked "What oncologist?"  It turned out that they were unaware that he had prostate cancer.  

The son of a friend who had been on dialysis for years went for his weekly treatment a few years ago. Shortly after beginning the proceedure, he went into violent seizures, and was taken by EMS to an ER.  The technician had left cleaning solution  in the machine !  The kid survived, fortunately.   Medical mistakes are one of the leading causes of death in the US, which is why nurses are asking you your birthday every ten minutes or so when you are getting any form of treatment. It is why surgeons who are going to amputate a limb write on the limb to be removed in Sharpie "This One," and write on the other limb "DO not Remove this One."

In other words, there is no telling why you have not heard back from your urologist, but if his practice is that unorganized and unprofessional, it may indeed be time to go elsewhere.  Assume nothing when seeing any medical provider.

max

 

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Ernie (Builder)

You got very good advices above. In my opinion you are a confirmed PCa patient but so are the majority of men at some stage of their life. Cancer seems to be part of our aging process that may interfere with our normal way of living or just “keep quiet” until we die of other causes.

It seems that your doctor is not in a “hurry” of passing you his opinion about the latest results. I would see it as “good” and not become so anxious because you hold a low aggressive diagnosis.
I am not sure if you are looking for a “quick fix” or peace of mind words, but you have all the rights to receive an answer.

One thing for sure you should keep in mind is that treatments for cancer cause a series of “damages” to our quality of life and that such should be avoided to the maximum. You need to be ready to make a decision on what you want to do and you got the time for it.

We have different feelings and some prefer to treat it aggressively the soonest. Some manage to accept to live with it but some are wise enough to treat the condition with a palliative “form” with the lesser effects in quality living. There have been considerable improvements in the way to analyse PCa diagnosis and its treatment. In my times it was different and one would easily go for the radicals. The stories of Hopeful and Max are two good examples of recent cases that may be a better choice in advices for decision making.

Active Surveillance is one mean of postponing treatment with constant vigilance. It needs courage to follow it when we know that we have cancer but do not aggressively fight it. However, nobody knows if such cancer is going to be the cause of one’s death. Another way of seeing the things is that treatments are risky and could easily become the beginning of one’s fight against an added illness.
I agree with Max in that “…Doing something is better than doing nothing…”, but what to do when we got a low aggressive diagnosis? Should we be aggressive and choose a radical or go palliative?

This is very difficult to decide. Only one own can answer and one’s decision surely is the best.

Best wishes for a good New Year to you and your family.

VGama

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

Interesting, I have just gone on with my life; I don't feel that I have courage///////when I was initially diagnosed and thought about having a treatment, I felt that it took a lot of  courage to have for example, a surgery,.........I was very apprehensive of having  the operation, and the immediate side effects of discomfort.

 

Another thought; is a low volume, low grade gleason 6' diagnosis really cancer?

I undertstand that that when there is higher gleason score and extensive volume cancer, treatment is required, and there can be very severe consequence of wrong or no treatment. This is a "cancer" diagnosis.

On the other hand,  I truely believe that a diagnosis of a low grade, low aggressive cancers is different( some medical experts feel that these type diagnoses should not be called "cancers") and properly monitored have similar number of deaths long term to those who seek radical treatments, without suffering from side effects.  There have been studies that document this. I also think that with the lastest technology(mainly the multi-parametric MRI evaluations), mortality will be less for those who follow AS than for those who have radical treatments.

 

Builder23
Posts: 29
Joined: Jun 2013

I want to thank you all for the wonderful advice, you all are so helpful and understanding. 

I just received a call from my urologist about the negative biopsy and he confirms what you have all said, He believes I still have Cancer, but it is probably only 2% of the volumn.  I will continue with him and have a PSA in another three months.

He apologized for not getting back to me sooner but he was on vacation.

BTW I did have the 3T MRI and the UNAV targeted fusion biopsy done at the Lakeland Regional Cancer Center. I think at this point I will continue with the active Surveillance and see how it goes.

My thoughts and prayers are with all of you.  Happy New YearSmile

 

Builder23
Posts: 29
Joined: Jun 2013

Good luck with you surgery in Jan.  I will be thinking of you and praying for a speedy recovery.

Ernie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

Thank you, Ernie.

I have been doing the "Kegel exercises," hoping that after one week on a cath post-surgery I will have urinary control soon afterward.  The RN who taught me the exercises said that teaching the exercise pre-surgery was new in their practice. Some urological surgeons have the patients exercise pre-surgery, others do  not, is what I was told. The friends of mine who have had RP in the last few years were only in diapers a few weeks post-op, and I hope for a speedy recovery like they had. I had to wear Attends when on chemo, since I received chomop continuously for eight hours on infusion day, and there was no way to urinate fast enough to expel all o fthe fluids, despite the fact that toward the end of the sessions I was going to the rest room every 15 minutes or so. The point is, I have experienced Attends before, and it did not kill me then, and won't this time either.

My surgeon told me that he has done "hundreds and hundreds" of Da Vinci RPs, and that he always attempts nerve-sparing, so that the paitent might regain sexual ability as well.  So, maybe it won't be too bad. I lost "that ability" for about a year after being crushed in an auto accident decades ago, but it came back unimpared after a year or so, so I am also familiar with problems in that arena also.

You cancer is so minor, that A/S is probably a good course to take.  I have been quoted here for saying in the past "Do something, rather than nothing."   But I know that indeed AS is "'doing something," and at times it is undoubtedly the best choice.  But it is almost certain that you do have some Pca hanging out, hiding at the moment.

A blessed New Year to all,

max

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

Has the  surgeon that you have selected discussed pre-surgery and post--surgery  protocols to preserve sexual ability?..

Builder23
Posts: 29
Joined: Jun 2013

Has not discussed surgery only the side effects and he suggested no surgery at my age even though I am healthy.

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

My question was to Max who will has decided to have surgery. Some doctors prescribe the little blue pill before, and include other methods after surgery to help overcome possible ED side effects from surgery.

Builder you are doing the same as me.....Active Surveillance with delayed treatment if necessary.......No surgery or other active treatment that have  possible side effects

 

h

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