It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cancer: Prostate Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 02-25-2012, 03:46 PM   #1
Junior Member
(female)
 
Join Date: Feb 2012
Location: Idaho Falls, Idaho USA
Posts: 18
jackie607 HB Userjackie607 HB User
Husband just diagnosed with prostate cancer

My husband's PSA was going up for over 5 years. He is 73. He has had 5 previous biopsies all negative. Finally when his PSA was 50 this year he asked if the urologist if could do anything else but another biopsy. The doctor did an MRI which showed a nodule. He had never sent a patient for an MRI before and didn't even know if they could do one here in our town. After the MRI the doctor then knew where to biopsy and the cancer was found. The doctor said, "I hadn't biopsied that spot because it was hard to get to and would have been painful" (anterior). He says cancer there is rare. Cancer was found in 50-60% of cores. Gleason is 7 (4+3). The doctor said free PSA was irrelevant. He something about the PSA was above 3 (the thickness?) I don't remember. The doctor gave us a book which prompted me to ask if any previous biopsies had shown atypical cells. He said he didn't know but would check. Yes, in 2007 he had high grade pin cells found. Shouldn't the doctor have told us or done something? We don't know yet if the CA has spread. My husband had a chest xray and bone scan on Friday. We know the chest xray showed a mass but we don't know what it is. He also had a CT scan but we don't know the results. We are frightened and don't trust the doctor. We live in a fairly small town but would go anyplace to get good care. How do we know where to go?

 
The following user gives a hug of support to jackie607:
Baptista (02-26-2012)
The Following User Says Thank You to jackie607 For This Useful Post:
combine20 (03-27-2012)
Old 02-25-2012, 08:21 PM   #2
Inactive
(male)
 
Join Date: Aug 2010
Posts: 689
Tall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB User
Re: Husband just diagnosed with prostate cancer

Hi Jackie,

I'm so sorry to hear about your husband's diagnosis. I'm also sorry to hear that he had to go through so many unnecessary biopsies. I can see why you're upset that it took so long to find the nodule. The PSA should not have had to go up to 50 before the nodule was found. It's true that most cancer is found in the peripheral zone of the prostate and not so much in other parts, but the continually rising PSA when there is no BPH or prostatitis present is certainly a danger signal. At centers of excellence, they would probably have given him something called a saturation biopsy or a multiparametric MRI-guided biopsy and found it sooner. The PIN is inconsequential -- it's pre-cancerous -- not a danger in itself and can arise when there is no cancer otherwise present. It's just another warning sign to keep track of. I also agree with you that there's no use pretending that the same quality of care is available in a small town as a major center.

That said, the question is what do you do now? He should probably have a bone scan, or better yet, one of the more sensitive PET scans, right away to look for metastases. While the mass in his lung should be investigated, it's unusual to spread there first. It usually spreads to the lymph nodes and bones first, soft tissue much much later. Probably some hormone therapy is in order as a first step. You didn't say what city or country you are in, so I can't tell you resources to explore. If you care to share that, I and others here, may be able to point you in a useful direction.

- Allen

 
The Following User Says Thank You to Tall Allen For This Useful Post:
jackie607 (02-26-2012)
Sponsors Lightbulb
   
Old 02-26-2012, 02:24 AM   #3
Veteran
(male)
 
Baptista's Avatar
 
Join Date: Aug 2010
Location: Albufeira, Portugal
Posts: 464
Baptista HB UserBaptista HB UserBaptista HB UserBaptista HB UserBaptista HB UserBaptista HB UserBaptista HB UserBaptista HB UserBaptista HB UserBaptista HB UserBaptista HB User
Re: Husband just diagnosed with prostate cancer

Quote:
Originally Posted by jackiestephens View Post
My husband's PSA was going up for over 5 years. He is 73. He has had 5 previous biopsies all negative. Finally when his PSA was 50 this year he asked if the urologist if could do anything else but another biopsy. The doctor did an MRI which showed a nodule. He had never sent a patient for an MRI before and didn't even know if they could do one here in our town. After the MRI the doctor then knew where to biopsy and the cancer was found. The doctor said, "I hadn't biopsied that spot because it was hard to get to and would have been painful" (anterior). He says cancer there is rare. Cancer was found in 50-60% of cores. Gleason is 7 (4+3). The doctor said free PSA was irrelevant. He something about the PSA was above 3 (the thickness?) I don't remember. The doctor gave us a book which prompted me to ask if any previous biopsies had shown atypical cells. He said he didn't know but would check. Yes, in 2007 he had high grade pin cells found. Shouldn't the doctor have told us or done something? We don't know yet if the CA has spread. My husband had a chest xray and bone scan on Friday. We know the chest xray showed a mass but we don't know what it is. He also had a CT scan but we don't know the results. We are frightened and don't trust the doctor. We live in a fairly small town but would go anyplace to get good care. How do we know where to go?
Jackie

I am surprised to read that the local doctor did not know about local clinics with MRI facilities. He is showing ignorance and incompetence in regards to our sickness, the prostate cancer.
Wondering if he has done a DRE.

I agree with your sentiment in not trusting the doctor and procuring for another specialist. Particularly with the many factors you report.

His biopsy cores should also be rechecked in a proper laboratory. You can request the doctor or you can do it yourself sending the samples by courier to reliable laboratories, such as Bostwick and Johns Hopkins. You may include all other information in the package if you want to receive their opinion on treatments too. Get the addresses using a net search engine.

His Gleason score of 7 (4+3) is intermediate but the grade 4 is aggressive. Probably the “3” in your doctor’s commented, was related to cancerous cells grade which above 3 requires detailed diagnoses (metastases, etc.) of more concern.

Allen is recommending you additional tests with PET because of the missing information regarding metastases, but these types of image studies are done only at certain clinics, which may be not feasible to your location. Bone scintigraphy scans tend to be more reliable when a patient’s PSA is higher than 10 (Your husband is 50). Even though, to get the best test is always preferable.
The CT scan will give a “picture” of the area in the pelvis but it may be negative if the abnormality in tissue caused by the cancer is smaller than 1.5 mm in size. This is a status known as micro metastases.

We all become frightened when confronted with a positive diagnosis of cancer. Becoming educated on the matter will help you to confront anxiety. There are many articles in the net that can help you to understand about treatments for 73 years old. You should also give consideration for any other existing health problem (or future) which could be prohibitive to some sorts of therapies.

I recommend you to get as many tests as your husband can now before committing to anything (DRE, PAD, lipids, testosterone, bone density scan, ECG, etc.). These will serve you with a better diagnosis of his present status, it can be useful as base data in future care and it will help in reaching to a better decision on any treatment.

You can also obtain books (Amazon can deliver used or new copies if you live in a remote place). I suggest these three that provide information on diagnosis, hormonal treatment, surgery and radiotherapy;

1) “Primer on Prostate Cancer, The Empowered Patient’s Guide” by Dr. Stephen Strum and Donna Pogliano
2) “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers
3) “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition June 2007)

You can also prepare a list of question searching the net with this sentence; “Questions to Ask the Doctor by cancer information from the American Society of Clinical Oncology"

I hope you find a specialist that your husband can trust and feel confidence.

Wishing you both the best.

Baptista

Last edited by Baptista; 02-26-2012 at 03:07 AM. Reason: add ASCO information

 
Old 02-26-2012, 03:35 PM   #4
Junior Member
(female)
 
Join Date: Feb 2012
Location: Idaho Falls, Idaho USA
Posts: 18
jackie607 HB Userjackie607 HB User
Re: Husband just diagnosed with prostate cancer

Oh what a wonderful thing for you guys to answer me. I feel better already. And such helpful advice.

We live in Idaho Falls, Idaho but are willing to go almost anywhere to get better care. My husband has had a bone scan and we will get the results tomorrow. I suspose we will learn many things tomorrow but I am learning from ya'll about all the questions we should ask.

My husband is in extremely good health. We celebrated our second anniversary yesterday. These last two years have been the happiest of my life. I just want to keep him around as long as possible.

He has no other problems and takes very good care of himself. He is still working. He has no symptoms of this problem. We both feel upset that we didn't know we should have done more about this PSA. He did everything the doctor told him to but we didn't know we should have done more.

I think what I have learned is that he needs to start hormone therapy sooner rather than later. Even if he is still a candidate for surgery or radiation I think he should start this hormone therapy while we are looking for another doctor. Don't you?

We need to ask that his pathology report and other test results be sent to Johns Hopkins to be interpreted by a specialist. Is that the best place? We have family in Southern California, Austin, St. Louis, Little Rock, Boise and Phoenix. We don't care where we have to go (like I said we'll go anywhere) we just want to get good care. Lots of people in our town go to Salt Lake because it is the closest major center but it is still 3 hours away.

I will ask about a PET scan. I have dreadful feelings about the mass on the lung. I suppose it could be something else. Well all we can do is wait until tomorrow.

It is so nice of ya'll to take the time to answer.

 
Old 02-26-2012, 03:38 PM   #5
Junior Member
(female)
 
Join Date: Feb 2012
Location: Idaho Falls, Idaho USA
Posts: 18
jackie607 HB Userjackie607 HB User
Re: Husband just diagnosed with prostate cancer

Thank you so much. I will order all those books and check out that site you suggested. I am going to request the results be sent to Johns Hopkins.

I really appreciate the time you took to answer.

I will let ya'll know what the results are tomorrow of the bone scan.

 
Old 02-26-2012, 04:10 PM   #6
Senior Member
(male)
 
Join Date: Mar 2010
Posts: 116
Johnt1 HB UserJohnt1 HB UserJohnt1 HB UserJohnt1 HB UserJohnt1 HB UserJohnt1 HB User
Re: Husband just diagnosed with prostate cancer

Jackie,
Don't be too hard on your doctor as there are probably only a handful of doctors that could have recognized this. I spent 10 years with a rising psa that finally got to 40. I went to major institutions like UCLA, UCI, UCSF and had 13 biopsies from 5 different urologists and an MRI. I finally found a doctor that knew what he was doing, Dr Mark Scholz, Prostate Oncology Specialists, in Marina Del Rey Ca. He immediately knew I had an anterior tumor and sent me to Dr Duke Bahn, an interventional radologist in Ventura Ca who discovered a large anterior tumor. Dr Bahn said that if I had 13 more biopsies they would have never found it.
The good news is that anterior tumors are normally not agressive and are usually contained. I had a combination of Brachytherapy and IMRT and my psa has been .1 for 3 years and I have no side effects. I would recommend Dr Scholz for a consultation or 2nd opinion. He only treats advanced cancer patients, but also does an excellent job in diagonosing and recommending the best treatments for the circumstances.
I live in Sandpoint ID for 6 months of the year and would not hesitate to travel to see Dr Scholz and I have a phone consult with him yearly just in case. You can also look into Dr Grimm in Seattle as he is the best Brachytherapist in the country. Brachy is very effective for anterior tumors and surgery would be a poor option due to your husbands age and the tumor location.
Good luck, and if you have any other questions please post them.
JohnT

 
The Following User Says Thank You to Johnt1 For This Useful Post:
jackie607 (02-27-2012)
Old 04-06-2012, 08:39 PM   #7
Junior Member
(female)
 
Join Date: Feb 2012
Location: Idaho Falls, Idaho USA
Posts: 18
jackie607 HB Userjackie607 HB User
Re: Husband just diagnosed with prostate cancer

Hi John, We finally had our consult with Dr. Scholtz this morning. He was wonderful. He has recommended a treatment plan and both my husband and I are encouraged and hopeful. I am so thankful that I got on this health board and got such great advice. I have read four different prostate books and am empowered by knowlege. I can't believe it was only a month ago when both my husband and I felt so frightened, angry and helpless. I want to encourage everybody to keep giving out your advice to newbies. You are truly saving lives. Jackie

 
Old 04-08-2012, 07:15 PM   #8
Senior Member
(male)
 
Join Date: Mar 2010
Posts: 116
Johnt1 HB UserJohnt1 HB UserJohnt1 HB UserJohnt1 HB UserJohnt1 HB UserJohnt1 HB User
Re: Husband just diagnosed with prostate cancer

Jackie,
Glad that Dr Scholz was able to help. Please post what his recommendations were as they may help others, and it is always useful to see what specialists recommend.
JohnT

 
Old 04-08-2012, 09:28 PM   #9
Junior Member
(female)
 
Join Date: Feb 2012
Location: Idaho Falls, Idaho USA
Posts: 18
jackie607 HB Userjackie607 HB User
Re: Husband just diagnosed with prostate cancer

He recommended both IMRT and brachytherapy in addition to 12-18 months of triple blockade.

We will go to LA area and see a radiation therapist named Jeff Demanes for the brachytherapy and then he will help us find a radiologist who is experienced with pelvic nodes for the IMRT. He's going to get us a prescription for the Casodex and Avodart to complete the triple blockade.

He answered all of our questions and encouraged my husband to join a gym and get a personal trainer. He discussed side effects of hormonal therapy and warning signs and ordered tests for osteoporosis.

Literally, the urologist here told my husband there was no point to radiation or other treatment. He gave him a Lupron implant and told him there were no side effects to worry about and to just go home and wait to die in somewhere between one and 20 years. He told my husband, "Well you're an old man." Then the oncologist we saw told me I probably knew more about prostate cancer than he did (I was carrying a big book about it) and just agreed with everything the first doctor had said. He specialized in breast cancer and we were told he didn't really do much with other cancers. The third urologist asked us, (before he even looked at my husband's record) that, "why are you asking me these questions? Dr. "____" is my friend and we share the same approach." He then asked us if we were going to keep going to doctor's until we found one who told us what we wanted to hear.

The reason I am going into all this is that you do have to be careful about listening to doctors in small towns. I am so thankful that I got on this health board and listened to what all of you guys had to say. I will be giving input as we go along because I would love to help other newbies as I've been helped.

 
Old 04-09-2012, 10:22 AM   #10
Inactive
(male)
 
Join Date: Aug 2010
Posts: 689
Tall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB UserTall Allen HB User
Re: Husband just diagnosed with prostate cancer

I am so glad that thanks to your persistence, your husband is finally getting the care he needs and deserves.

I know Dr Demanes and think he is one of the best out there. He (and Dr Martinez at William Beaumont) have created new ways of delivering and monitoring HDR Brachytherapy so that it is now one of the best therapies out there in terms of its curative power and side-effect profile. I also found him to be very patient, personable and caring. My radiation oncologist at UCLA was Dr King, who I think can do the IGRT/IMRT -- again, a pioneer and leader in his field.

The challenge in irradiating pelvic lymph nodes is in imaging and distinguishing the cancerous ones from the non-cancerous ones. Nodes are numerous, and cancer there is harder to detect than cancer in the prostate. There are a few techniques for finding them. Jim has just used a new experimental technique using feraheme as a contrast agent with a 3T MRI to accomplish this. I think you will find that Drs like Demanes and King may be willing to prescribe feraheme off-label and do the MRI at UCLA if you discuss this with them. There are also a few other types of scans -- fused PET/CT scans -- that may be able to detect cancerous lymph nodes. The best is called C11Choline, after that is F18Choline, and then NaF18. I don't know which, if any of these, are available at UCLA. Possibly at USC or Cedars-Sinai in the LA area -- you'd have to call around. I think this would be a good discussion for you to initiate with Dr Demanes, Dr King or whoever your other Radiation Oncologist is. Don't expect them to initiate this discussion, because it is well beyond business as usual. Perhaps you can print out this paragraph and show it to them.

I think it is so great that you have empowered yourself and become your husband's health advocate. By posting here, I think you are giving many the courage to do the same.

- Allen

 
The Following User Says Thank You to Tall Allen For This Useful Post:
jackie607 (04-10-2012)
Closed Thread




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added




Top 10 Drugs Discussed on this Board.
(Go to DrugTalk.com for complete list)
Casodex
Cialis
Cipro
Flomax
Levaquin
  Levitra
Morphine
Proscar
Tylenol
Viagra







All times are GMT -7. The time now is 11:22 PM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!