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Waiting for the Biopsy results
 |
Sep 17, 2015 - 11:46 am
Hello, 9-17-15 I am a 52yr old hispanic. I missed my physical last year due to just being too focused on work and just pain busy. I was diagnosed with type 2 diabeties 2.5 years ago and have been able to control it with diet and excercise. However my AC1 this last visit was a bit higher than the doc wanted so he put me on metforman.....And I put on a few pounds so I am working on that. The real problem is my PSA jumped up to 44. I have had the biopsy on Monday (that sucked) today is Thursday and I am scheduled for a visit next Tuesday. All I read about the high PSA number is bad news. I don't have any symtoms, none. Sexual I am fine I maybe get up to uninate once in the night..... I just don't get it. The Urologist put me on casodex after my intial visit with him and during the biopsy he told me my prostate is of normal size. The biopsy was not all that bad, I was uncomfortable for the first 8 to 10 hours afterwards. very little blood in my stool and no blood in my urine.... I am just a bit overwhelmed....I am planning to get married next month and wham this hits.....no good. Also I started this new job less than a year ago and have the Kaiser HMO plan....seems like good doctors and a good facility in Irvine, California.
Thanks for reading. Carlos |
Joined: Sep 2015
Waiting for results
Hi Carlos,
I know how it feels to wait for those results, lots of things start going through your mind. I had numerous symptons before my biopsy in March 2015 and 8 of the 12 samples came back positive for cancer with a Gleason scale of 7 but my PSA was only a 4.1. Now is a good chance for you to do some reading about prostate cancer because you will want to be knowlegable if it is detected in your biopsy. Sounds like your doctor is being proactive by placing you Casodex (hormone therapy) to lower your testosterone because the prostate cancer cells feed off of testosterone. There may be some side effects from this type of hormone therapy, you may want to read up about the side effects so you are prepared for them. I am currently receiving Lupron, it also lowers the testosterone, the Lupron causes symptons similar to menopause in women (hot flashes, chills, sweats & a few others). Hopefully your biopsy will come back negative for prostate cancer, stay strong.
If it turns out you have prostate cancer you will want to do a lot of reading/research so you can make informed decisions about types of treatments and so you can pick a good team of doctors. There are a lot of great people here in this forum that are willing to help you through this journey if it turns out you have prostate cancer.
Ron
Joined: Sep 2015
Lupron
Ron,
You were right about the Lupron thing. Boy does this suck. But i guess it's better than the alternative. On the plus side it took the 44 PSA down to 2, on the negative side I have a testosterone score of 15.....Maybe I should take up nitting..... The doc said I would probably have to be on Lupron for 24 months , well one shot down and 21 more months and 6 more shots to go. They are hitting me with radiation. I have had 6 treatments so far and i have 37 more to go and then we see what is what.
Not very happy about it all but like I said it beats the alternative.
Carlos
Joined: Apr 2009
Some information for you.
Carlos,
I also live in OC, near Seal Beach. There are support groups in the area that are great for information and emotional support, that I stongely recommend that you and your Lady make available, since this is a couples disease.
The best one that I know of, and attend on occasion is the prostate forum of orange county. The next meeting of this group is September 24th, next Thursday. There is pre - discussion meeting specially for newly diagnosed that starts at 5PM, that will answer many of your questions. The main meeting with a presenter starts at 7 PM. There is a lending library with lots of DVDs and books oriented to prostate cancer that are available, a returnable deposit is needed. Here is iinformation that I copied and pasted from an email. You can have your name placed on the email list..
First Presbyterian Church, 838 North Euclid Street, Fullerton, CA 92832
How to get there:
From 91 (Riverside) Freeway: Take the Euclid Street exit, go north 1 3/4 mile.
From Interstate 5 Freeway: Take the Euclid Street exit (in Anaheim), go north 3.0 miles.
Your admission ticket will be paid for by the Forum and is good for all 3 days!
September Reminders:
Dr. Souadjian is also a composer so be sure to have your speakers turned on!
* PCa Diagnosis using MR/Ultrasound-Fusion Guided Biopsy Ending "The Needle in a Haystack" Conundrum? (JAMA Network, June 4, 2015)
* Androgen Receptor Splice Variant 7 and Efficacy of Taxane Cemotherapy in Patients with Metastatic Castrate-Resistant Prostate Cancer (Original Investigation, published by JAMA Oncology online, June 4, 2015)
*Statin Use and ADT and time to progression (original investigation, published online by JAMA, May 7, corrected, May 21, 2015)
* Note from Dr. Tisman re the following paper on Circulating Tumor Cell (CTC) Biomark - use this link!
* Circulating Tumor Cell(CTC) Biomark paper. (Original Report, Journal of Clinical Oncology, March 23, 2015)
Subject: Xofigo (Radium 223) and Palliative External Beam Radiotherapy for bone metastasis.
******************
* Short 2014 -15 videos by Dr. Charles "Snuffy" Myers: Click here to view.
* Help us to help others! Now you can safely contribute to us via PayPal using your credit card and without the need for a PayPal account. To donate, click on this link and follow the instructions! A receipt of your contribution will be emailed to you.
* Also see list of videos on our web site by subject & treatments (see section C) at the end of numerical list of videos. Click here to go directly to the videos
page.
By Phone: (951) 545-1616 By email: prostateforumoc@gmail
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i haven't been in a while but Hoag Hospital in Newport Beach has a support group as well. So does St Joesph in Orange , however infrequently. Near me in Long Beach there is pretty good one at long beach memorial that i attend The next meeting is 9/22 at 6:30PM, millers childrens pavillion converence room c. If you go, make sure , when dr Wachs asks about new guys to the meeting , make sure to tell what's going on so he can answer. Although i generally attend this one, I will not be there since I observe a jewish holiday that evening.
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Eating heart healthy is also diabetes health and prostate cancer healthy. We with prostate cancer, of which you are not at this time, generally live longer than the rest of the population since we eat heart healthier and do not as often sucomb to this epidemic. I for one now eat a veggie diet with some limited fish, which many eat a mediterranean diet. This will not cure you, but increases the survival of those who eat heart healthy with regular exercise.
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As you know a psa is of 40 is very high; aside from PCa there are various factors that contribute to this number, can be an infection, sex before the PSA, even a hard stool, but 40 is still very high, and I doubt that these would contribute to all of the PSA.l
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Biopsy.......be aware that there can be blood in semen.
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Many of us do not have any symtoms until the cancer really spreads, but you will need to make smart decisions based on the results of your biopsy....with this disease you will not be in a rush, if you are diagnosed, so you can do your research.
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In case you are diagnosed, you will go into shock, and have all those negative feelings that all of us do....this usually last for a few months.
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Not much more to say until you get the results of your biopsy.........keep us in the loop.....we are here for you.
H
Joined: Sep 2015
Thank you!
9-17-15
Thank you both very much. It is much appreciated.
The Doc called me today and 6 of the 12 samples came back positive a score of 4 +3 on the Gleason scale. So I am going in tomorrow for a Cat Scan and next Thursday for a Bone scan so they can figure out what stage it's in and the urologist said I would be speaking to other specialist once these test get completed to come up with a game plan.
For some reason I feel a bit better now that I know, the uncertainty was worse. So I will definetly look into the support groups and keep working out and eating right....
I very much appreciate the support.
Joined: Apr 2009
Some tips
Carlos,
First, you want to have a copy of your medical records, to include the pathology results for discussion with concerned individuals outside of Kaiser.
Pathology results: What is the involvement, that is the percent that is cancerous of each of the positive cores. Are each of the cores that are cancerous a 4+3=7, or do some of the cores have a different Gleason Score. Was anything else mentioned in the pathology results?
Second opinion of the Pathology: The pathology is critical in determining treatment. Determining Gleason scores is an art. It is advisable to have a second opinion of these scores, and anything else that may be involved in your pathology by a world class pathologist....there is a difference among pathologists. There are a few, two are Jonathon Epstein at Johns Hopkins, and another is Bostwick Labs. I'm not sure but I think that the cost for this is about 200 dollars. You might wish to speak with your doc, and ask that the slides be sent. Maybe Kaiser will pick up the tab. (To e perfectly honest this is more relevant with a lower Gleason such as a 3+3=6 or a 3+4=7
Third, if you are interested in Fathering any children at this time, you may wish to store semen.
Fourth, you may wish to ask for a bone density test at this time, as a benchmark, in the case that you might receive hormone treatment which can have an effect on your bones. You will know what the effects of treatment will be. Also find out your current testestorone level.
Fifth, I sugest that you ask to speak with a Medical Oncologist at Kaiser, they are best qualified to administer hormones if needed. She will be impartial to treatment type; surgery or radiation, or radiation plus hormone. You want to have as few treatment types as possible because the side effects are cumulative.
Sixth: You also want to speak with radiation oncologist; there are different types of radiation. This person is the expert about this...look into a form of IMRT, and if possible SBRT. He will be the expert.
There are diagnostic tests that as I understand are not available at Kaiser; one being multiparametric MRI. This will give you a very good idea if extracapsular extension exists, and will affect your treatment decision......maybe Kaiser currently has this available. you can ask.
Let your family member know about what is going on, since they are more likely to develop prostate or breast cancers than the rest of the population...brothers, sisters, cousin, uncles, etc.
Research,research, read books , internet, support groups,
Wish you the best,
We are here for you
H
Joined: Sep 2015
Thank you all!
9-21-15
I have to admit I am a bit in shock over all this. I had the CT scan last week and I meet with the Urologist tomorrow and he said I would be talking to a team of doctors in the coming weeks. I have a bone scan scheduled for Thursday this week so I am in the cue.
I am grateful for all of your advice and perspectives.
Once again, thank you.
Carlos
Joined: Mar 2010
Why Casodex?
Personally, I think it premature to put you on casodex. All you know right now is that you're a Gleason 7, which is still relatively minor.
Anti-androgen medication is normally prescribed for more serious/aggressive cancers (Gleason 8-9) and it'snot clear that's what you've got yet. Using casodex now could also mask the growth and extent of your cancer by causing your PSA levels to drop giving you a false sense of confidence that the cancer is uncer control, when in fact it may still be growing.
If you want to get a clear picture of the extent of your cancer, you should ask for and get an MRI/MRSI spectrographic scan using an endorectal coil. This scan locates the presence and level of choline (which is a marker for cancer) in the area scanned -- in this case the prostate and immediately adjoining tissue (including the bladder and rectum).
Once you get a clear picture of the extent of the cancer, you can then make a more informed treatment choice, which may or may not include surgery, radiation, hormone therapy and/or chemo.
Good luck!
Joined: Mar 2015
Pleased to meet you Carlos.
Welcome to the G7 club. Get the tests then make your choices, be logical and get all the information you can up front before you have to decide.
I also had no symptoms, but my PSA kept going up. When it hit 4.5 I got my first sonogram biopsy. Nothing. When it hit 7.5 I got a thorough DRE. Again, nothing. When it hit 11.1 I went to another urologist and got a very serious biopsy. He knocked me out, ran a camera up my urethra and took 12 prostate cores. I scored 12 out of 12 with G7(3+4) acinar adenocarcinoma. "Locally advanced" After surgery it was bumped up to G7(4+3).
I am really glad that I caught the horsie before he left the barn. At least that is what my medical team figures and I am hoping. Good luck bro, keep us in the loop.
Rich
Joined: May 2012
Numbers
Carlos,
When I saw in your first post that your PSA was 44, I suspected you would get biopsy results similair to what came back. While PSA is not a "proof" of PCa at any level, a "44" is quite high. Many guys mention that non-cancerous issues can cause a number that high. The thing is, they usually don't.
You mostly need to be doing treatment research. One of the easiest ways to do this (after all of your testing is in) is to meet a radiation oncologist and a surgeon -- at least one of each, but your post indicates that your doc is already steering you in that direction.
I hope that all indications from the scans are that a curative treatment option is readily available to you.
max
Joined: Sep 2015
meetings
Looks like I need to find a meeting. For the sake of my new wife. I am not very happy about this and it is definetly an issue that I need to address. Not that a meeting will make me happy but I suppose it is worth a shot to get some perspective.
Carlos
Joined: Apr 2009
support group meetings
Prostate Forum of Orange County
First Presbyterian Church, 838 North Euclid Street, Fullerton, CA 92832
Meets 4th Thursday of the month, which will probably be January 28 2016
Here is a listing of how the meeting generally works.
Pollet, Sandy <Sandy.Pollet@hoag.org>
is the nurse in charge. You can contact her for information.
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Long Beach Memorial has a support group as well
It is usually the 4th Tuesday....here is the contact information........(I also try to attend this one)
Gloria Boza
Executive Secretary
Long Beach Memorial Hospital
Todd Cancer Institute
2810 Long Beach, Blvd., CA 90806
Phone: 562-933-0971
Fax: 562-933-0958
e-mail gboza@memorialcare.org
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Hope that the above helps...please feel free to contact me with questions?
If you wish, please let me know which one you will be attending, if any.
Best
Joined: Dec 2015
Good start
Hi Carlos,
Sounds like you are doing what needs to be done. The alternatives are never good (doing nothing, ignoring it etc)
You mentioned you have had 6 trtmts w/ 37 to go. Thats a strange number. Proton Beam is usually 39 w/ trial groups now doing 15. Not familiar with IMRT/ IGRT (maybe thats what you are doing and I missed it).
I just finished 39 trtmts of Proton Beam at MDAnderson Houston & couldnt be more content. Proton Beam isnt for everybody but I met a lot of Gleason 7s and a few Gleason 8s (I was a GL6) All of them opted for radiation and were extremely thankfull they had an alternative to RP.
BTW....all GL7 & GL8s I met had Loupron before & were probably going to be on it a while.
Keep us updated. I'll be praying for you.
Sam
Joined: Sep 2015
Hang in there
Carlos,
I'm so sorry to hear of your situation.
I was diagnosed with Prostate Cancer in October of 2013. I had a Gleason of 7, My PSA was at 69. I, also, had no symptoms. I had robotic assisted surgery on Dec 10, 2013. Pathology came back with 40% involvment of the prostste and one very small spot in one lymph node. I was diagnosed as a Stage 4. I was treated as an advanced stage Stage 4, even though was actually a very high Stage 3. My doctors told me they were going to be very aggressive. I was put on Lupron, and had 8 weeks / 5 days a week of Radiation. Two weeks after the surgery, before the Lupron and Radiation, my PSA was down to 2. After Radiation and Lupron my PSA went to <0.010. It has stayed at <0.010 ever since. This past Dec 10, I am a 2 year survivor. I am on my last Lupron shot now. It will be done in the end of January/ beginning of February. I will have been on Lupron for two years. That's been tough. However it has done what it was supposed to do. They have my testosterone at 17, as of the last blood test. The Lupron will linger for 4 more months beyond February, and some of the side effects will go on for up to a year. We are going to watch and see whether my PSA stays at "0". If so, I will be able to be off the ADT as long as the PSA stays down. Lupron builds up over time. The side effects get stronger with every shot. Be advised of that. As this last Lupron shot is "winding down" I have really good days at times. Then it hits hard, again. By June we should know if my PSA will stay at "0". If it starts to come back up then we are ready to move to the next thing, which will be doing an Orchiectomy. I had aggreed to have that surgery over a year ago, but then my Doctors thought I was doing much better than they expected, and we decided to try two years of Lupron with the hopes that the cancer will not come back. They all tell me that they are "puzzled" by my progress. I was told that on average, in my situation, I would have at least a two year survival, and my doctors told me they would assure me at least three years, with the treatment plan we were going on. However as time has gone along, they are now talking plans for 10+ years from now. They have started to use the word "Remission" at my last appointments. I have switched from every 3 - 4 month appointments at Radiation and Chemo Oncology to once a year at Radiation, and every 6 months at Chemo. I will continue to have Urology appointments every 4 months for the rest of my life to monitor the PSA. God willing, one way or the other, they hope to keep me in Remission. Be advised that we are never cured. This will always be hanging over our heads.
On top of this, I had been through Melanoma surgery 13 years ago. Since the Prostate Cancer diagnosis, my Melanoma has "fired up", again. I've had 11 melanoma surgeries in the past year. I am now going to a Skin Oncologist once a year and to Dermatology every three months. Every time they find 1 or 2 more melanomas. My Skin Oncologist at Hershey Medical in Hershey, PA has told me that when a person has been through a "Solid Tumor" Cancer and the treatments, that many times Melanoma will show up. So, Please be aware of that and have a GOOD Dermatologist check you very carefully. They are catching all of my Melanomas at a very, very early Stage 1 or at a pre melanoma stage.
I hope you continue to progress. Don't give up. Fight hard. My wish for you is that you to will be able to hear the word remission used in your future, very soon.
As I was advised on this Forum, by one of our "Bros", Enjoy everything you can. Look for the simple little things that make you happy and look for the beauty in everything in Nature and Life. Trees, Birds Singing, Sunsets, Wind, Rain, Lightning, Snow and such. Hold on to the love of Friends and Family. Go out and do the things that make you happy. For me, that's my music, my exercise and weight training, working in the yard, and taking drives with my wife in my new Dodge Hemi Challenger RT. My wife has been and is the best nurse and companion anyone could ever think of having in this situation. Hold on to all those important things in life that make you happy.
Best wishes for a Merry Christmas and very Happy New Year.
Peace and God Bless,
Will