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Got the biopsy results last Tuesday

Tim_via _Texas
Posts: 3
Joined: Feb 2011

This is my first post on this board. I am a 55 year old man with a history of Hodgkins Lymphoma for which I was treated 29 years ago. Since that time my health has been less than robust but I have l been quite fortunate in that I never had a relapse in all those years. Last year my PCP referred me to a dermatologist for a half-dollar size spot on the skin of my lower chest. He biopsied it and the results came back basil cell carcinoma. The treatment was simple enough, it was surgically excised and I was on my way, no further treatment required. Last month I had a regular check up with my PCP and she did a PSA blood test. I had had one a few years back and it was in the normal range. This one came back at 10.2. She referred me to a urologist for followup and we discussed my history and family history, etc. I told him my older brother had been treated for prostate cancer about 7 years ago. He urged me to have a biopsy. He also did the digital exam and told me it felt like a normal healthy prostate to him, neither hard nor squishly. I enquired if the PSA could be in error and he acknowledged it could be and offered to run another one. That's what we did and it came back 18.8. I scheduled the biopsy and it was done two weeks ago. The urologist's office called me last Monday and said they had to reschedule our follow up appointment, could I come in tomorrow? I said yes and when I went in I got the news that the biopsy was positive, 7 of 12 samples cancerous and my Gleason score 8 (4+4). I must say I had prepared myself for bad news, but not that bad. I mostly listened to what he had to say in a state of befuddlement. He said I should have a CT scan and a bone scan. He said I should do some research and get a second opinion but I should act soon, no more than two months to commence treatment. He said in his opinion my best option was surgery, radical prostatectomy. I responded that I did not find the surgery option appealing. He said, okay, radiation also delivered good results for many patients. I left the office and went back to work. The urologist's staff was to schedule the CT scan and bone scan.

After having a couple of days to reflect, I don't believe I want to continue with this urologist. First, in each of my interactions with him, I have had to remind him I have a history of cancer, the Lymphoma and the basil cell. He says, oh yeah you mentioned that as if it is of no great importance. Also, he asks me each time, someone in your family had prostate cancer, right? Yes, my brother did, I have now told him four times. Next, why is he telling me that surgery is my best option when he hasn't any more information than the biopsy, no CT scan results, no bone scan results. How can he possibly make a recommendation? Lastly, his office staff never delivers on promises to call with results, schedule followup, etc. It has always required followup on my part.

I am in the Houston area and I have now scheduled a visit with MD Anderson. They have a satellite clinic in my part of town and I will go in on Tuesday to meet first with their urologist and later a radiologist. This Thursday, I will have an appointment with the oncologist / hematologist who checks me annually for my Hodgkins lymphoma followup. I had just seen him in July and he gave me a clean bill of health. Wow, what a difference three months make. I do have very good confidence in this particular doctor and if he has any recommendations regarding a followup with another urologist, I will definitely take him up on it. I would give any advice he might have great weight. Also, the CT scan and bone scan has now been scheduled for the following Monday. If the MD Anderson doctors want to do one in house before then, I can always cancel.

That's where I am now. To say I am stressed and anxiety ridden would be to understate it badly. Fortunately, I have a wonderful supportive fiancee and very good health insurance provided through my job. I feel very fortunate for both of those things.

Any advice would be much appreciated. Do you think I am unreasonable in my criticism of the diagnosing urologist? Do you think my decision to walk away from him is correct?

cchqnetman's picture
cchqnetman
Posts: 97
Joined: Sep 2012

Tim,
I agree with your decision to walk away from your urologist - well wait I would say run! I think when you have to tell your doctor something that is in the notes he hasn't been doing his job - reading the notes before he sees you. I would do some serious research and make up my own mind. My uro is also oncologist and a surgeon. He simply stated "get the facts and if you decided on surgery I would be glad to do it". I am currently doing active surveillance as my cancer is still small (two out of 12 cores positive (one 5% and one 50%) and one core with PIN). I have decided I don't like any of the options but I supposed at some point I will have to make a decision. I have just recently joined this forum and have learned so much. There are great people on this forum way more knowledgeable than I am and can offer better advice but I would just like to welcome you and wish you the best of luck.

David

Swingshiftworker
Posts: 650
Joined: Mar 2010

I think you are correct in walking away from your urologist.

He may very well be "qualified" to handle your case, but it's evident that he doesn't seem to care enough to give your case enough attention. There are A LOT of urologists and other specialists who deal w/PCa. So, you're doing yourself a favor by looking for one that pays attention and takes your needs more seriously.

Good luck!!!

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

I'm sorry for your condition, Prostate Cancer is mean monster, but you going to the Best in the nation as far as MDACC.

I would do all my testing at MDACC, because the same day have your CT scan you will see the Prostate cancer specialist. The name of my Doctor is Amado Zurita MD, and I have been with him for 3 years. He has kept this monster in control and he has the some the latest clinical test in the nation.

I can only amagine the anxiety you have.

God bless

VascodaGama's picture
VascodaGama
Posts: 1589
Joined: Nov 2010

Tim

Welcome to the board.
Firstly let me tell you that you have not been unreasonable with your criticism. Unfortunately many here got similar experiences with their initial doctors.
In any case, your next appointments at MD Anderson will provide you with more info and peace of mind. The best move after the initial “stage” is to find a doctor that you trust and that can give you proper advice.

Gleason 8 cases are for high risk of recurrence and it would be better to get a second opinion on the samples from a specialized pathologist. Details on any existing extra capsular extension or PIN would give you more clues for what is happening in your prostate.
The PSA of 18.8 ng/ml could be erroneous if they have drawn the blood after the digital rectum examination (DRE). Typically it increases after manipulations of the prostate. But, even the initial PSA of 10.2 was high and such could be related to the cancer.
We do not know how “professional” was the doctor in doing the DRE. How far could he in fact detect abnormalities which could be indicative of extensions at the capsule?

The image studies may provide info on any metastases but they frequently are negative in cases with PSA lower than 10 or if the cancer has spread in small colonies of small sizes (lesser than 2 mm).

Two months may be enough for you to educate in the matters of the disease. You need to research about diagnosis and treatments and their side effects. Young patients got a lot to lose and so one should consider the quality of life in any decision.

A good book to read is ;
A “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (latest edition); which may help you understanding options between surgery and radiation.

You should also prepare a list of questions to the doctors so that you will be prepared when confronting them. Here is a link that may serve as an example to your list;
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

Many survivors here will help you in understanding the facts.

Wishing you luck in your journey.

VGama

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Best way to go, this doctor sounds to be a little on the grey side. My doctor took a lot of time to explain all of the treatment methods. And not just push surgery, It is good that you got appt with MD anderson. Good luck and follow thru. Welcome Kurt

Samsungtech1
Posts: 350
Joined: Jan 2011

Tim,
You might want to read some of the old posts on this site. There has been quite a bit of discussionof surgery vs. Cyberknife, BMRT. MDAnderson, from people on this site should do the proper tests to see where your cancer is. That should guide you with your decision. Seems to me that Urologists always want to cut. Probably because that is their money maker. Knowledge is the key. Diet and exercise are the other secret to success.

Good luck, I wish you well.

Mike

hopeful and opt...
Posts: 1353
Joined: Apr 2009

I am sorry for your diagnosis. It is typical to have negative thoughts and fears for a few months. Try to surround yourself with upbeat people, be as positive as you can . For example if you attend religious services, find a cleryman who is "upbeat". I find that being educated about the "beast" helps a lot, so keep learning by researching, visiting this site, attending local support groups, etc, etc.

As mentioned it is an excellent idea to have a second opinion of your biopsy slides by a "world class" who specializes in prostate cancer.

MD Anderson is a " world class" institution, that ranks among the very best.

Great call not to do the tests of your urologist, these major institutions like to do the tests at their own facility. They generally feel, and probably correctly that their personnel is better at selecting the necessary diagnostic tests, performing the tests, and analzing the results. Also their equipment is generally better.

(Not saying that your urologist is bad, just saying that MD Anderson is among the very very best.)You will be in the best of hands. Your decision is a wise one.

Keep on posting here with your progress and any questions that you might have.

We are here for you

BLUEpac6
Posts: 34
Joined: Jun 2012

Sorry to hear about your diagnosis.I live in kilgore texas and in 2009 I was diagnosed with prostrate cancer and a psa of 110.My psa aug.2012 was less than 0.01.I have had raical surgery by dr.Seth Lerner at Baylor clinic in Houston tex. and Highly recomend him Ihad no side effects and no pain.Ialso had salvge radiation July 2011. Read my complete story on page 4 6/29/12 .Psa now less than 0.01 was110.Hope everything turns out fine.

dwhite1031
Posts: 26
Joined: Jul 2012

Hi Tim, and welcome to this exclusive club of ours! It's an honor to have another Prostate Pilot among us! With the pre-existing conditoins you spoke of, I would say by all means, you're right on track. You and your fiance have a dog in this fight! It's your prostate and your cancer, and you should expect to treated like you matter.

MDACC is where I am currently getting my PCa treatment. We were very impressed by their thoroughness and their compassion! I have pre-existing conditions of Type II diabetes, Barret's Esophagus, and a stomach condition called gastral antral vascular estacia (GAVE) where the blood vessels in the stomach come to the surface and bleed. The docs at MDACC took all of this into consideration with regard to my treatment protocols. Its all clearly documented and was discussed in length by the docs I saw.

They reviewed the bone scans and CT I had at home and brought on DVD, and also had their pathologists re-assessed the biopsy slides from home. They had appointments for me when I arrived with a Urolgist/Surgical Oncologist, Radiation Oncologist, and a Medical Oncologist.

In short, we are so grateful we were led here to MD Anderson, because like you, we have a dog in our fight too! I higly recommend them!

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