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IMPERATIVE TO READ-SECOND OPINION WAS OUR GAME CHANGER FOR PCa

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Posted 12/3/2015 4:52 AM (GMT 0)
My husband was diagnosed with metastatic PCa to the pelvic bone in late August. His PCa had gone from 3.6-7.8 in six months and a bone scan done from his urologist showed pelvic met. He was started on hormone therapy,lupron shot and generic casodex- I sought out an oncologist who specializes in prostate cancer, a Dr Michael Morris who was recommended by someone in another prostate forum as they used him and were quite happy with him. He not only had a wonderful bedside manner but besides looking at the tests that were ordered by the urologist he ordered an MRI and a number of his own tests .when we went for the results yesterday Dr Morris and his team decided that what was seen on the MRI seemed to be benign-!!and recommended prostate surgery which wasn't even an option before!! And of course he would not need the hormone therapy which was systemic! So going to Memorial Sloan Kettering and seeing their team of doctors was a TOTAL GAME CHANGER! MAKE SURE YOU ALL GET A SECOND OPINION FROM AN ONCOLOGIST WHO SPECIALIZES IN PROSTATE CANCER!! I post this to let you all know that it could lead from one diagnosis to another!!
Posted 12/3/2015 1:40 PM (GMT 0)
Sammyswife, that's great news.
Did Dr Morris comment on the effect that the HT that has already started might have on the surgery?
Posted 12/3/2015 2:11 PM (GMT 0)
Hi Sammys wife,
Really great news for you and your husband. You are both an example of what happens when you are your own advocate. Wishing you both the very best for a good outcome and many many years together.
Posted 12/3/2015 3:14 PM (GMT 0)
Congrats to you. When I was reading your post my first thought was...wow, that's a low PSA to have a pelvic met. Glad that was the case and glad you found a good medical resource to show you the way!

If I may be so bold, now that you've learned the wisdom of a second opinion, may I suggest that you also talk to a radiation oncologist to learn how your husband might do with radiation as a primary treatment? (Both brachytherapy and SBRT.) Given that your husband doesn't have mets, he has a range of treatments available to him and it would good to get a full understanding of those options. BTW, depending on the diagnosis, some radiation regimens start off with Hormone Therapy to increase efficacy and your husband has already started that.

Most important, congrats on your good news! Good luck to you both!
Posted 12/3/2015 4:29 PM (GMT 0)
The change of status is exciting...great to hear it!

Also glad to hear you connected with a doctor you feel good about.

I just wanted to comment that bone metastasis is not confirmed via bone scan. There may be "suspicions" of a met from a bone scan, but a bone scan only shows areas of bone growth which may be due to multiple causes. In fact, it is notable to establish that medical guidelines for prostate cancer care do not even recommend having a bone scan or CT scan unless the patient's PSA is greater than 20 ng/mL (please see the sticky thread "Newly diagnosed with PC..." for more info on this)

On the other hand, if it was a met site, your husband's the hormone treatment may have reduced it over time prior to being read by Dr Morris.

The wild card in his case seems to me to be the very low PSA, which you reported (if I understood correctly) never exceeded 7.8 ng/mL. There are infrequently occurring variants of PC which throw off low amounts of PSA but can be aggressive, but in general one would NOT expect to see a bone met with such a (relatively) low PSA. His prostate biopsy Gleason score—which I did not see in this thread—would likely shed additional light on this.

But congratulations on the good news that the bone scan spot seems to be reduced!

Post Edited (JackH) : 12/3/2015 12:08:05 PM (GMT-7)

Posted 12/6/2015 6:15 PM (GMT 0)
Thank you all,thanking this support group for all the info and if I can help anyone with posting how crucial it is to get another opinion especially from the oncologist who specifically deals with prostate cancer,that is very important

Also it seems his team (Dr morris) just put it all together given the PSA, THE 4+3 that was now read as 3+4 ,and whatever factors they discussed and saw that they go the route towards benign. He will get the surgery end of january and it will be be robotic where they remove everything in there to send out to pathology. The urologist didn't even give us that as an option-he went bright to stage 4 androgen blockade! So important to speak to other doctors! Especially from a renowned place!!!!!!!
Posted 12/6/2015 6:49 PM (GMT 0)
Sammyswife
You seem to be still rushing the decision of surgery. Why is that? "Getting it out" can have bad consequences and 40% require radiation after failure. Please talk to an excellent radiation oncologist.
Bob
Posted 12/6/2015 8:34 PM (GMT 0)
I wouldn't say they are "rushing" to get it out. He was diagnosed in August, and is a G7. It would seem that Dr Morris, a medical oncologist specializing in PCa and other genutoury cancers at MSKCC, is saying surgery is a good option. I'm not saying any Dr should be followed blindly, God knows I didn't follow my original uro said advice, but my understanding is that Morris is a pretty well respected MO.
This is just a guess, but I'm betting that since they went to MSKCC, an RO was involved.
Also, curious, about the "40% of surgery patients require radiation". Particularly with a (3+4)...Source?

I don't mean any disrespect to anyone. And we are all in this together. And we all have good intentions. All here to help,others, newly arrived.
It just seems to me that it's a fine line between support and medical advice, and sometimes we cross it. . I've posted about this in the past.
I realize we are all, including me, colored by our own experiences. As I said, I mean no disprespect.

I just think sometimes, when a newly diagnosed member has made a decision, thus taking a big weight off their shoulders, with expert guidance, it's sometimes best to say good luck and leave it be. Whether that decision is AS, Radiation, or surgery. Unless that person is making a gross error that is apparent to any layman, and not taking advice from a respected medical professional at a major cancer center/NCC.
Just my humble, non medical, uneducated, human, opinion.
Posted 12/6/2015 8:40 PM (GMT 0)
Prat:

Well said.

I've been on HW a lot. Maybe that's the reason it is getting to the point that I can see certain names and I will recognize/know the ax they are about to grind.

Mel
Posted 12/6/2015 9:15 PM (GMT 0)
To the original OP point: Particularly with PCa, getting ourselves to top notch facilities and people is vital. Many community level oncologists are great for common cancers like colo-rectal, and have good successes. PC seems to be trickier than average to diagnose correctly and treat well. Which is why getting to those great centers is vital.

For me, if MSK suggested a particular treatment, then I'd pay attention.
Posted 12/6/2015 10:47 PM (GMT 0)
Yes Pratoman Dr Morris is highly recommended at MSKCC where we went. He explained options to us and getting it all out is the way to go. Yes, he has a Gleason 7 which is intermediate, its not like a "slow grower" and the surgeon I spoke to at Sloan Kettering is the head of the robotic team,and he plans to start him on a med before the surgery that will help keep him functioning. I feel that the doctor explained each way to go and we all came to this conclusion and I know you understand as when I first posted on here you were quick and nice enough to answer asap. You are right about coming to a conclusion with a reputable doctor from a very reputable place.
Posted 12/6/2015 10:49 PM (GMT 0)
And yes, MSK is very reputable and this doctor has alot of experience in genitourinary oncology.
Posted 12/6/2015 11:51 PM (GMT 0)
Whats most important, SW, is that you and your husband have educated yourselves, learned about all the options, and are at peace with your decision. Which apparently you are. So thats good.
Here's to a good outcome!!! Please keep us posted on how things go and good luck with the surgery.
Posted 12/7/2015 6:14 AM (GMT 0)

halbert said...
To the original OP point: Particularly with PCa, getting ourselves to top notch facilities and people is vital. Many community level oncologists are great for common cancers like colo-rectal, and have good successes. PC seems to be trickier than average to diagnose correctly and treat well. Which is why getting to those great centers is vital.

For me, if MSK suggested a particular treatment, then I'd pay attention.

I agree Halbert. Glad we live near this world renown facility :-)
Posted 12/8/2015 6:11 AM (GMT 0)
I had a similar experience when our rural Florida standard bone scan was mis-read as bony mets.

However, I was still G9 when biopsy was re-scored by Johns Hopkins. The F18 sodium test performed by Dr. Fabio Almeida in Phoenix proved I had never had mets.

However it showed some suspicion for Lymph Node involvement that the C-11 Acetate test confirmed was 3 micro LN's all contained.

This in spite of the fact that my PSA was only 0.27 and the recommended test range is >=2.

So my diagnosis went from stage IV treatable but not curable, palliative radiation only if pain became unbearable, to locally advanced and treatable with SBRT and Provenge.

So particularly for those of us who live in remote areas rather than major cities, I always recommend a second opinion.
Posted 12/9/2015 1:56 AM (GMT 0)
sammyswife
I am very glad you sought out another opinion. Also happy that the second opinion was in your husband's favor. As Pratoman stated above, we are all influenced by our own treatment choices and outcomes. I would even say that we are galvanized by those choices. Consult the best doctors, lay out a plan and move forward. Live your life.

I have been member of HW since late 2009 when my journey began. I have seen many well intentioned folks cross the line of giving medical advice. Tread carefully my fellow HW members.

Also, realize that many of us that have had good outcomes, tend to not visit as often as we once did. While many of our HW members with poor or questionable outcomes will congregate here to discuss options and possible regrets of their treatment choices. I know that I only drop in when my annual PSA test is due and the PC thoughts come back.

RickyD
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