Worried Wife Husband Gleason Score 9 Mid 40s
My husband (mid 40s) was recently diagnosed with agressive prostate cancer. This is the information we know so far:
Gleason score is a 9
PSA level is 252
Atypical cells in urine based on a cytology w/ FISH report
Prostate weight 120g
12 Biopsy Samples taken all 12 positive Average 85% involvement
CT scan: Negative
Bone Scan: negative
I am looking for any advice as you can imagine I am extremely worried. The whole process started when he was having a poor urine flow, constant urge to use the bathroom and a change in color of urine. After 3 months of test, 3 week series of Antobiotics, biopsy, etc we received the dreadful news. The urologist went through the normal I'm sorry to tell you... this is what was done ...and this is what was found... Then he asked if we were looking to have anymore children since I am in my early 30s and explained our options in the same professional tone. Once he was done explaining the details he is obligated to explain, he kind of changed to a little more human tone than DR. He explained that my husbands condition cannot be taken lightly, that although he can help us have more children if we want, we should really consider the degree of his cancer. He also went on to say that more than likely with a gleason score of 9 a PSA level of 252 and all biopsies positive it is likely the cancer has spread and is too small to detect. He also stated it is very rare for someone my hubands age(45) to have such aggressive prostate cancer and if we like he will refer our case to a urology oncologist because he is unable to determine the type of treatment to use because of his age. He said basically he is not giving recommendation on treatment, that the oncologist will give the first opinion of treatment and run any further test necessary.
I dont know if we should be angry at the dr or respect the doctors honesty. I did do extensive research on the urologist before my husband went and basically he is the best of the best in my area. So you can imagine when one of the best couldnt give us a recommendation on treatment, our hearts skipped a beat and we went numb. Absorbing all this information was so overwhelming we didnt even ask questions.
We are scheduled to go to the oncologist next week and are scared. We dont know what to expect at all. I guess I am looking for any advise on what to ask or any other test we should be doing. Or if anyone his age or close has been through this situation that can share their experience with us.
Comments
-
So sorry
Dear KC
Welcome to the forum but I am so sorry that you find yourself here. I completely understand the anxiety you and your husband must be going through after this serious diagnosis. As your urologist pointed out, this is indeed a very dangerous diagnosis and one that is quite rare for a man of your husband's age.
Your urologist probably gave you the best advice he could have and I applaud his honesty and professionalism in not trying to persuade you to follow a treatment course that may not result in any curative effect. There are greatly differing opinions on the proper course of action in a case of advanced prostate cancer and referring you to an oncologist is putting you in the best possiblel hands. Many urologists may have urged your husband to have his prostate removed (hence the talk about future children) but his assessment that the cancer has likely spread beyond the prostate means that removing the prostate will not do anything to curb the growth elsewhere in the body. Removing the prostate after prostate cancer has spread is like closing the barn door after the cows have escaped. It really doesn't do any good and can have a significant adverse impact on your husband's quality of life.
Radiation is a potential treatment course but there is going to be some calculated guesswork involved. Not only will they probably want to radiate the prostate but the other pelvic area adjacent to the prostate where prostate cancer often spreads when it breaks free of the prostate capsule. Without accurate imaging capability to pinpoint tumors outside the prostate, they are basically guessing where the cancer might be.
Prostate cancer spreads from the prostate through the blood stream, through the lymph system, and from cell to cell in the areas immediately adjacent to the prostate. Even radiation the immediate area of the prostate will not affect cancer cells that may have traveled to distant organs through the blood stream and lymph system.
The oncologist will likely want to start your husband on a regimen of hormone therapy very quickly. Hormone therapy acts to inhibit the production of testosterone in the testes which is necessary for prostate cancer to grow. Hormone therapy is not curative although it may significantly slow the growth of cancer. It is essentially chemical castration so there are side effects associated with HT that the oncologist should explain to you in detail but often include a decrease in libido, impotence, hot flashes, and weight gain.
Besides the oncologist, I hope you also consult with a radiation oncologist and another urologist who may feel that surgery would be beneficial. It is important to understand with these experts are recommending even if they have very different recommendations (and they will). I also urge you and your husband to continue to educate yourself about prostate cancer. This forum is an excellent start but there are many other sites on the internet with valuable information about treatments and options.
Keep in mind that every treatment has a downside and sometimes the side effects can be brutal and result in incontinence, impotence, penile atrophy and shrinkage, bowel issues, and so forth. Please make sure the doctors explain the side effects in detail so you can make informed decisions about the risks assoicated with a treatment.
Besides the prostate cancer, your husband has to deal with the greatly enlarged prostate. Because of the physical location of the prostate in the pelvic skeleton area when it enlarges to the point where your husband finds himself, it has no place to expand and is squeezing the urethra which passes through the prostate. This is what is causing the urinary difficulties. I am sure that it is greatly affecting his quality of life and you both need to work with the doctors to address this issues as well as the cancer issue. They are very much related. Your husband's prostate is about 4 times larger than a normal sized prostate for a 45 year-old man.
In any event, many men with a diagnosis of advanced prostate cancer life long and fruitful lives and technology is rapidly advancing. There is much to hope for.
I hope you keep us informed of your journey.
All the best,
K
0 -
KCKongo said:So sorry
Dear KC
Welcome to the forum but I am so sorry that you find yourself here. I completely understand the anxiety you and your husband must be going through after this serious diagnosis. As your urologist pointed out, this is indeed a very dangerous diagnosis and one that is quite rare for a man of your husband's age.
Your urologist probably gave you the best advice he could have and I applaud his honesty and professionalism in not trying to persuade you to follow a treatment course that may not result in any curative effect. There are greatly differing opinions on the proper course of action in a case of advanced prostate cancer and referring you to an oncologist is putting you in the best possiblel hands. Many urologists may have urged your husband to have his prostate removed (hence the talk about future children) but his assessment that the cancer has likely spread beyond the prostate means that removing the prostate will not do anything to curb the growth elsewhere in the body. Removing the prostate after prostate cancer has spread is like closing the barn door after the cows have escaped. It really doesn't do any good and can have a significant adverse impact on your husband's quality of life.
Radiation is a potential treatment course but there is going to be some calculated guesswork involved. Not only will they probably want to radiate the prostate but the other pelvic area adjacent to the prostate where prostate cancer often spreads when it breaks free of the prostate capsule. Without accurate imaging capability to pinpoint tumors outside the prostate, they are basically guessing where the cancer might be.
Prostate cancer spreads from the prostate through the blood stream, through the lymph system, and from cell to cell in the areas immediately adjacent to the prostate. Even radiation the immediate area of the prostate will not affect cancer cells that may have traveled to distant organs through the blood stream and lymph system.
The oncologist will likely want to start your husband on a regimen of hormone therapy very quickly. Hormone therapy acts to inhibit the production of testosterone in the testes which is necessary for prostate cancer to grow. Hormone therapy is not curative although it may significantly slow the growth of cancer. It is essentially chemical castration so there are side effects associated with HT that the oncologist should explain to you in detail but often include a decrease in libido, impotence, hot flashes, and weight gain.
Besides the oncologist, I hope you also consult with a radiation oncologist and another urologist who may feel that surgery would be beneficial. It is important to understand with these experts are recommending even if they have very different recommendations (and they will). I also urge you and your husband to continue to educate yourself about prostate cancer. This forum is an excellent start but there are many other sites on the internet with valuable information about treatments and options.
Keep in mind that every treatment has a downside and sometimes the side effects can be brutal and result in incontinence, impotence, penile atrophy and shrinkage, bowel issues, and so forth. Please make sure the doctors explain the side effects in detail so you can make informed decisions about the risks assoicated with a treatment.
Besides the prostate cancer, your husband has to deal with the greatly enlarged prostate. Because of the physical location of the prostate in the pelvic skeleton area when it enlarges to the point where your husband finds himself, it has no place to expand and is squeezing the urethra which passes through the prostate. This is what is causing the urinary difficulties. I am sure that it is greatly affecting his quality of life and you both need to work with the doctors to address this issues as well as the cancer issue. They are very much related. Your husband's prostate is about 4 times larger than a normal sized prostate for a 45 year-old man.
In any event, many men with a diagnosis of advanced prostate cancer life long and fruitful lives and technology is rapidly advancing. There is much to hope for.
I hope you keep us informed of your journey.
All the best,
K
I would like to thank you both for your posts. Kongo, I have learned so much from reading your posts and you spend much time and effort in helping others, and you have helped me a great deal. I have advanced prostate cancer and am facing the same problems. I have been to several doctors, and you are right, each one seems to have their own idea of how to treat. The laymen is at great disadvantage here by not having any knowledge of what direction to go. I have changed my urologist. One needs to get all the information possible, and then make the best guess decision. If you are at all uncomfortable with your Dr, quickly find one you trust and are comfortable with. Some Drs seem to hide information and make a decision about what and how much you need to know. I prefer an open Dr who is willing to tell me everything, even if it is what I do not want to hear. I have been to three urologists. Even though the opinions often do not agree, I feel I want to know all the options.
KC, it is important for you not to get wraped up in the negatives of this issue. It is what it is,and nothing is going to change that. You have control over what you do and how you think. Accepting the problem may not be easy, but it is your only choice. I try to look at this with a very positive atitude. I try to make the most of very moment of every day, live only in the moment, not the future or the past. If you spend time thinking about and dreading the possible outcome, you waste the present moment and lose a chance to enjoy the here and now. There are many constructive steps you can take. Certainly changing to a new diet, meditation, exercise, andother postive steps can be taken. I am looking at breath therapy for pain relief. I do not have pain, now, but surely it is coming. There are many therapies that can be of help. Accupuncture, hypnosis and many others. Not all of these are acceptable to every person. You have to see with fits for your lifestyle.
I can chose whatever path for my mind that suits me. I chose celebration of every moment of my life. I live in the present, - no future, no past. Only making the very most of each moment I have. Of course, this is not easy, but can you think of a better way to live? love, rakendra
0 -
I am sorry for your husbands diagnosis,Kongo said:So sorry
Dear KC
Welcome to the forum but I am so sorry that you find yourself here. I completely understand the anxiety you and your husband must be going through after this serious diagnosis. As your urologist pointed out, this is indeed a very dangerous diagnosis and one that is quite rare for a man of your husband's age.
Your urologist probably gave you the best advice he could have and I applaud his honesty and professionalism in not trying to persuade you to follow a treatment course that may not result in any curative effect. There are greatly differing opinions on the proper course of action in a case of advanced prostate cancer and referring you to an oncologist is putting you in the best possiblel hands. Many urologists may have urged your husband to have his prostate removed (hence the talk about future children) but his assessment that the cancer has likely spread beyond the prostate means that removing the prostate will not do anything to curb the growth elsewhere in the body. Removing the prostate after prostate cancer has spread is like closing the barn door after the cows have escaped. It really doesn't do any good and can have a significant adverse impact on your husband's quality of life.
Radiation is a potential treatment course but there is going to be some calculated guesswork involved. Not only will they probably want to radiate the prostate but the other pelvic area adjacent to the prostate where prostate cancer often spreads when it breaks free of the prostate capsule. Without accurate imaging capability to pinpoint tumors outside the prostate, they are basically guessing where the cancer might be.
Prostate cancer spreads from the prostate through the blood stream, through the lymph system, and from cell to cell in the areas immediately adjacent to the prostate. Even radiation the immediate area of the prostate will not affect cancer cells that may have traveled to distant organs through the blood stream and lymph system.
The oncologist will likely want to start your husband on a regimen of hormone therapy very quickly. Hormone therapy acts to inhibit the production of testosterone in the testes which is necessary for prostate cancer to grow. Hormone therapy is not curative although it may significantly slow the growth of cancer. It is essentially chemical castration so there are side effects associated with HT that the oncologist should explain to you in detail but often include a decrease in libido, impotence, hot flashes, and weight gain.
Besides the oncologist, I hope you also consult with a radiation oncologist and another urologist who may feel that surgery would be beneficial. It is important to understand with these experts are recommending even if they have very different recommendations (and they will). I also urge you and your husband to continue to educate yourself about prostate cancer. This forum is an excellent start but there are many other sites on the internet with valuable information about treatments and options.
Keep in mind that every treatment has a downside and sometimes the side effects can be brutal and result in incontinence, impotence, penile atrophy and shrinkage, bowel issues, and so forth. Please make sure the doctors explain the side effects in detail so you can make informed decisions about the risks assoicated with a treatment.
Besides the prostate cancer, your husband has to deal with the greatly enlarged prostate. Because of the physical location of the prostate in the pelvic skeleton area when it enlarges to the point where your husband finds himself, it has no place to expand and is squeezing the urethra which passes through the prostate. This is what is causing the urinary difficulties. I am sure that it is greatly affecting his quality of life and you both need to work with the doctors to address this issues as well as the cancer issue. They are very much related. Your husband's prostate is about 4 times larger than a normal sized prostate for a 45 year-old man.
In any event, many men with a diagnosis of advanced prostate cancer life long and fruitful lives and technology is rapidly advancing. There is much to hope for.
I hope you keep us informed of your journey.
All the best,
K
and the challenges you both will face.
We all go through shock and all the negative feeling when we are diagnosed. This usually lasts a few months.
I agree 100 percent with Kongo. You were fortunate that the urologist that you saw had your husbands well being in mind, was honest with you, and directed you to a Medical Oncologist (By the way you want the best Medical Oncologist that you can afford to lead your medical team in managing your husbands case) instead of taking advantage of you as many do, in recommending a surgery with the possible major side effects that would be cummulative with the side effects of other treatments.
There are about 50 medical oncologists in the United States who specialize in prostate cancer only. This can be an excellent choice.
It is advisable for your husband and you to attend a local support group. Some groups are great at emotional support, others at providing information about PCa and the best doctors in the area, or country In my opinion you want excellence from your medical team, and this can be the difference between success and failure. If you have to travel to find excellence it will be worth while.
Two National Support groups are Man to Man and US TOO. There are chapters in various locations, so google their sites to determine when there will be a meeting in your area. By the way , where do you live...some at this internet site may be able to direct you to a "best" doctor or support group, etc/
As part of the research that you need to do, you need to read books about PCa, especially those about advanced PCa, study the internet,(pubmed.com is great source for studies) etc.
You will want to explore various diagnostic tests with your medical team
One being
" I just watched a really interesting 17:35 minute video of a lecture by
Dr. Eugene Kwon, a medical oncologist at the Mayo Clinic.
If a patient has a rapidly rising PSA after primary treatment, and the
PSA is at least 1.0, they inject him with a radioactive (positron
emitting) choline solution that is attracted to live prostate cells,
wherever they are. A PET (Positron Emission Tomography) scan conducted
an hour later will show where those prostate cells are. They need a PSA
above 1.0 because if the cancer is too small, it won't show up on the scans.
The really important thing about this is that Dr. Kwon and his
colleagues have determined that in many cases of metastatic disease, the
cancer is NOT all over the body. It's focused in one or a few specific
spots. Treating those spots with surgery or radiation can result in
what appears to be long term control of the cancer.
I get the impression that the technique is too new to say how well it
works in the long run but, if I remember correctly, he's had patients go
from a PSA of 10 or higher to 0.0 two years later.
It won't work for every patient, but for those patients for whom it does
work, it seems like a pretty nice alternative to intensive hormone
therapy followed by chemotherapy followed by death, doesn't it?
Here's a link to the lecture:
http://askdrbarken.wordpress.com/201...n-mayo-clinic/ "Another diagnostic test is an MRI with a Tesla 3.0 magnet, the state of the art. The resolution are very fine so it is likely to show extracapsular extension immediately outside the capsule.
Here are the names of books that I think are germaine to you.:
Beating Prostate Cancer (Hormonal Therapy & Diet, 1) (Hormonal Therapy & Diet, 1) by Dr. Charles Snuffy Myers (2007)
- (13)
I believe that there is an updated version of this above book.
1. "A Primer on Prostate Cancer: The Empowered Patient's Guide" by Stephen B. Strum, M.D. and Donna L. Pogliano (2nd Edition, 2005 - Paperback) List Price: $28.95
..............................................................................
Below is a listing of books on Prostate cancer that I copied from a local support group, Prostate Forum of Orange County in Southern CA. which I attend. Some may be ones that will interest you.
To order books directly from AMAZON.COM., BARNES & NOBLE and BORDERS, often at discounted prices, use these links:
www.amazon.com. Page that opens shows the top 20 best selling books on the subject.
www.barnesandnoble.com Page opens to the B & N home page. Use the search function in the upper left corner of the page - type in "Prostate Cancer"
www.borders.com Page opens to Barnes & Noble's home page as B & N is servicing the bankrupt Borders accounts. See details at the site.
"Here is our list of recommended reading on the subject of Prostate Cancer; some of these book will be applicable to your husband.
1. "A Primer on Prostate Cancer: The Empowered Patient's Guide" by Stephen B. Strum, M.D. and Donna L. Pogliano (2nd Edition, 2005 - Paperback) List Price: $28.95
2. Dr. Patrick Walsh's Guide to Surviving Prostate Cancer by Patrick C. Walsh, M.D., Janet Farrar Worthington (Hardcover - August 2001) In-Print Editions: Paperback List Price: $25.95
3. Prostate & Cancer: A Family Guide to Diagnosis, Treatment & Survival by Sheldon Marks, M.D.; Foreword by Judd Moul, M.D. (Paperback - December 15, 1999) List Price: $18.50 Buy new: $12.95 Used & new from $7.00
4. The ABC's of Nutrition & Supplements for Prostate Cancer by Mark A. Moyad, M.P.H. List Price: Used & new - from $8.48
5. Seeds of Hope : A Physician's Personal Triumph over Prostate Cancer by Michael A. Dorso, M.D. (Hardcover - August 2000) List Price: $24.95
6. Prostate Cancer : A Non-Surgical Perspective by Kent Wallner, M.D. (Paperback - August 2000) Other Editions: Paperback (Large Print) List Price: $15.95
7. Prostate And Cancer: A Family Guide To Diagnosis, Treatment And Survival by Sheldon Marks, M.D. (Paperback - February 4, 2003) List Price: $17.50
8. The ABC's of Prostate Cancer: The Book That Could Save Your Life by Joseph E. Oesterling, M.D. and Mark A. Moyad, M.P.H. (Paperback - June 1997) List Price: $22.95
9. A Revolutionary Approach to Prostate Cancer (Revised Edition) by Dr. Aubrey Pilgrim and Dr. E. David Crawford. (Paperback - 2002) List Price: 18.95. Net proceeds from this book go to support PAACT (Patient Advocates for Advanced Cancer Treatment)
10. Eating Your Way to Better Health-The Prostate Forum Nutrition Guide by Charles E. (Snuffy) Myers, Jr., M.D. Sara Sgarlat Steck, R.T. and Rose Sgarlat Myers, PT., Ph.D. List Price:$25.00
11. His Prostate and Me: A Couple Deals With Prostate Cancer by Desiree Lyon Howe (Paperback - April 2002) List Price: $16.00
12. Dr. Peter Scardino's Prostate Book, completely revised and updated by Peter T. Scardino, M.D., Chairman of the Department of Surgery at Memorial Sloan-Kettering Cancer Center and Judith Kelman. No. 11 on Amazon's list. Paperback, list price: $20.00. Also available from the Prostate Forum lending library.
13. Testosterone for Life by Abraham Morgenthaler, M.D., Associate Clinical Professor, Harvard Medical School. Published by McGraw Hill. Paper back, 196 pages, pages 115 - 174 deal with Testosterone and PCa in great detail. List price: $16.95. Not available in the Forum library yet."
0 -
Treat,ends
I am so sorry for your husbands diagnosis. I was there and my urologist told me that most Dr.s would not do it, but he said lets take the prostate out, treat the cancer in bladder and see where it goes. Most Dr.s will not do this. They say radiation, etc. we did RP, broad spectrum radiation and then we paused. Unfortunately it was in lungs from beginning. So had 24 treatments of radiosurgery to lungs. Currently on HT every 28 days. Take casodex every day.
PI think you and yourhusband need to consider that an RP will take nerves and seminal vessels, which means no more sex.there might be something better, but this is a bad diagnosis. Have they done CT or MRI, or pet scans yet? It helps with treatment options.
I wish you the best of luck. By the way if you still want children a sperm bank would be a good idea, just in case.
Mike
0 -
I can relate
Just this past Thursday I sat in my Dr's office and heard similar news. 11 of 12 samples positive. Gleason 8 or 9. I had a CT scan done prior and it didn't show any spread other than "prominent seminal vessicals". PSA 4.7 1.5 years ago and 4.2 now. I just turned 50. Wife, 3 kids. The Dr asked me if I had any questions, and when I paused, he insisted, you must have some. To be honest, I heard him talking but after the news, I wasn't really listening. He immediately put me on bicalutamide in preparation for a hormone therapy injection on Monday. He explained that the goal of the hormone therapy was to slow the growth, weaken it, and reduce it in an an effort to maximize treatment outcome. He has outlined a radical prostatectomy along with biopsy of the lymph nodes, etc. In my case, there is evidence that it's spread to the seminal vessicals. I was confident in his direction, but ater doing so much research on my own, I'm bewildered. Everyone you talk to says get a second opinion....... I don't know if the direction your Dr gave is the right one, but I must say his honesty with you in my mind is commendable. After much reading and thinking, I have a list of questions that will probably frustate him to death when I go back on Monday. Up to this point, I'm frustrated by some people's s reaction to my news. They seem to be brushing it off by saying oh every man gets it, get it taken out and you'll be fine, 90+ percent survival rate...... When I interpret the stats, living for 10 years with prostate cancer when you're 75 is a lot differrent than being diagnosed in your mid 40's or by 50. We all have to deal with the facts in our own way I guess.
I'm sorry we crossed paths this way but wish you and your husband only the best. I think it's great that you posted on his behalf -- Good Luck
0 -
Glad I did my homework
My thoughts and prayers to you and your husband and family. As anxious these moments are,
please know that the technology and support groups are there for both of you to navigate this difficult time. My experience with PC last year has certainly changed my life in many ways.
My experience was moderately aggressive PC which after a few weeks of intense research and doctor visits was addressed with hormonal therapy and proton treatment. The research time I believe actually helped manage the anxiety for all. I met with specialists for all treatment options
and looked for the treatment plan which not only would cure me but maintain my quality of life.
I am in my early 50s so not having myself or the family burdened with a life of potential side
effects was important to me. This is what I can suggest through my experience; every case is
unique, do your homework on all treatments and if you are candidate to receive that treatment, compartmentalize and keep a journal, make your decision and don't second guess it.
I would suggest asking about having high res MRI and second opinion on pathology slides prior
to making a decision.
I would be happy to supply further information if you like.
May God Bless you, your husband and family during this time.
Rocky6412
0 -
Going through the same
Hi there,
I was having one of those days where I search the web to read if anyone is going through the same situation as me and there you were, so I signed up. I am 39 and my husband is 48. We've been together 16years and after months of similar symptoms to what your husband is going through we found out in March it was prostate cancer. Of course I thought at first well it must be early enough for them to cure it as he is much younger but after his biopsy it turned out every sample was a Gleason score of 9. So again we felt crushed. We had the bone scan and CT Scan shortly after and unfortunately it has spread to his lypmh nodes and bones already.
We started Hormone Therapy a few weeks ago and apart from some hot flashes and fatigue the bone pain has minmized a bit and my husband is starting to get a bit back to his normal self. We won't know for a few months if the treatment is working for sure but my husband has changed his diet and is trying to start excercising again to build his strength back up.
Before finding out the cancer had spread we were told that options would likely be surgery to remove the prostate and possibly radiation treatment as well. And that if the spread of the cancer is local then the prognosis is much more positive.
Its really hard to remember all the things you want to ask when you get to the doctors office, so found it helped to write everything down. Then we wrote down the answers as well. Or you could record everything on a cell phone or something as its so overwhelming and you just can't remember everything.
I hope your appt went well and that your managing okay.
0 -
Gleason Score 9 Mid 40's
Dear KC,
I'm even more of a neophyte at this business than you and your husband are (having received my diagnosis one month later) but your husband has a similar cancer profile to mine and I think a few of the things I've learned in the past few weeks might be helpful to you and your husband as well. By similar profile I mean Gleason 9 score, high PSA and 12 or more positive cores with a high fraction of malignant cells, but negative bone scans and CT scans. Some of this information I learned from the many valuable responses to your post and so I won't bother to repeat it of course. Other information likely coincides with what you and your husband have already learned since you've had a head start, but I'll describe it anyway because maybe this will provide you with a little more confidence in its validity. I also realize you and your husband and his doctors may have already settled on a treatment plan, but in case not, here goes:
1. The negative bone scans and CT scans suggest that my disease (and your husband's) is curable. However, given the advanced nature of the disease, this outcome will require careful planning and treatment by the best, most experienced doctors that are available. If your husband can be treated at a major academic cancer center associated with a university that has an extensive cancer research program, I would try very hard to make this possible. I learned this in part from my own experience, which involved initial treatment by a well-intentioned but ill-informed community practice physician.
2. I'm learning that a high resolution MRI scan that images cancer cells and determines their location is a really important source of information to help plan treatment.
3. Already I've received conflicting advice from different doctors about specific courses of treatment, including from physicians at major cancer centers (two so far). I think this likely reflects the fact that the advanced state of my disease (and your husband's) occurs relatively rarely. This means these physicians are making recommendations without the larger database of knowledge developed from experience treating less aggressive disease. The solution for me will be to accumulate as much information as I possibly can by reading books by experts at cancer centers and online information from professional cancer organizations (like the ACS and this forum) and by consulting with several physicians who have a great deal of experience treating advanced prostate cancer. Based on the recent recommendation of another member of this forum, I'm also planning to attend meetings of a local prostate cancer support group. The goal is to understand the logic of the physician's recommendations as best I can and how it relates to the logic of other physician's recommendations and different aspects of my personal situation, which I know better than anybody. This sometimes seems like a daunting task for someone without medical training, but I'm convinced it's possible, especially for someone who is not easily intimidated by doctors. For example, using this approach I've already figured out beyond a shadow of a doubt that I should not continue to be treated by the urologist who first diagnosed me, even though he's a nice guy and his diagnosis was right on the mark.
4. It has helped enormously to have a supportive spouse who is willing (for example) to accompany me to meetings with physicians (when she can) and take notes and ask questions. This provides valuable backup data to fill in the gaps that occur when I'm occasionally overwhelmed and my brain turns to mush. You sound like you might be her clone, but in any case, your husband is a lucky guy to have someone like you for a spouse.
Good luck, and please keep us posted on your husband's progress.
0 -
Thank You - Staying Positive
I want to apologize for not responding earlier; I was a little overwhelmed. I want to thank all of you for sharing your experiences with me. I wish you all the best.
Here is the update:
PSA rose to 411, We are still awaiting PET Bone Study & Hi Res MRI results. Biopsy slides are being reviewed by tumor board at Smilow Comprehensive Prostate Cancer Center NYU. We met with a Urological Oncologist and the options so far if PET & MRI come back showing cancer has not spread: Radical Prostatectomy (nerve sparing if possible) and radiation OR Hormone Therapy and Radiation. He has not started any treatment yet. Smilow is an amazing place there is a whole team reviewing our case.
Kongo- You set me in the right path. Thank you so much.
Rakendra- Your words were inspiring. We have been a lil more accepting of the situation which has allowed us to once again enjoy our lives
hopeful and optimistic – your references are appreciated. I have watched and researched Dr. Kwon. Should the treatment option he chooses does not work and they can’t figure it out we have looked at our options and cost associated with seeing Dr. Kwon.
Samsungtech1 – I wish you the best of luck. We are not so concerned about side effects of RP. The Dr did explain to us if they perform surgery and it spread to nerves they will have to remove nerve as well. Side effects of any treatment aren’t really a concern (we are very creative LOL) having my amazing husband and father of my children safe is my main concern.
Tp23 - I completely understand how you feel, but I have come to realize people just don’t know what to say. I don’t think they mean any harm they just try to throw stats to make people feel better. Good Luck I wish you the best of luck.
Rocky6412 – Thank you. I wish you luck,We are awaiting results on HiRes MRi and 2nd opinion on pathology slides
Kyla74 – I understand how you must feel we are still taking test to make sure the cancer hasn’t spread but his PSA did go up again which is not a good sign. We will have a results and the Board’s recommendation by the end of next week. Its going to be a long journey and if you are interested in having support from another wife going through the same situation send me a message. I know I can use it J
Mounty- We are hoping the PET & MRI are negative. If you did not have these tests I suggest you do. They give a better picture than regular bone scan and CT. A cancer center I found was the best decision. We have a team of different oncologist, medical, radiation, etc. all reviewing his case. I know it must be hard for you and your family. I am glad you have a supportive wife, it is so important during a time like this to know you are not alone. And please let her know she is not alone either; there are other spouses out there and if she ever needs to talk she can message me. I do suggest you research which cancer centers are good for Urology in your area. Thank you for your response and best of luck.
0 -
kc1033 said:
Thank You - Staying Positive
I want to apologize for not responding earlier; I was a little overwhelmed. I want to thank all of you for sharing your experiences with me. I wish you all the best.
Here is the update:
PSA rose to 411, We are still awaiting PET Bone Study & Hi Res MRI results. Biopsy slides are being reviewed by tumor board at Smilow Comprehensive Prostate Cancer Center NYU. We met with a Urological Oncologist and the options so far if PET & MRI come back showing cancer has not spread: Radical Prostatectomy (nerve sparing if possible) and radiation OR Hormone Therapy and Radiation. He has not started any treatment yet. Smilow is an amazing place there is a whole team reviewing our case.
Kongo- You set me in the right path. Thank you so much.
Rakendra- Your words were inspiring. We have been a lil more accepting of the situation which has allowed us to once again enjoy our lives
hopeful and optimistic – your references are appreciated. I have watched and researched Dr. Kwon. Should the treatment option he chooses does not work and they can’t figure it out we have looked at our options and cost associated with seeing Dr. Kwon.
Samsungtech1 – I wish you the best of luck. We are not so concerned about side effects of RP. The Dr did explain to us if they perform surgery and it spread to nerves they will have to remove nerve as well. Side effects of any treatment aren’t really a concern (we are very creative LOL) having my amazing husband and father of my children safe is my main concern.
Tp23 - I completely understand how you feel, but I have come to realize people just don’t know what to say. I don’t think they mean any harm they just try to throw stats to make people feel better. Good Luck I wish you the best of luck.
Rocky6412 – Thank you. I wish you luck,We are awaiting results on HiRes MRi and 2nd opinion on pathology slides
Kyla74 – I understand how you must feel we are still taking test to make sure the cancer hasn’t spread but his PSA did go up again which is not a good sign. We will have a results and the Board’s recommendation by the end of next week. Its going to be a long journey and if you are interested in having support from another wife going through the same situation send me a message. I know I can use it J
Mounty- We are hoping the PET & MRI are negative. If you did not have these tests I suggest you do. They give a better picture than regular bone scan and CT. A cancer center I found was the best decision. We have a team of different oncologist, medical, radiation, etc. all reviewing his case. I know it must be hard for you and your family. I am glad you have a supportive wife, it is so important during a time like this to know you are not alone. And please let her know she is not alone either; there are other spouses out there and if she ever needs to talk she can message me. I do suggest you research which cancer centers are good for Urology in your area. Thank you for your response and best of luck.
Kc,
All I can say is "Wow!" You are an extraordinary person, but I'm sure your husband has already told you this.
0 -
Staying positive reduxkc1033 said:Thank You - Staying Positive
I want to apologize for not responding earlier; I was a little overwhelmed. I want to thank all of you for sharing your experiences with me. I wish you all the best.
Here is the update:
PSA rose to 411, We are still awaiting PET Bone Study & Hi Res MRI results. Biopsy slides are being reviewed by tumor board at Smilow Comprehensive Prostate Cancer Center NYU. We met with a Urological Oncologist and the options so far if PET & MRI come back showing cancer has not spread: Radical Prostatectomy (nerve sparing if possible) and radiation OR Hormone Therapy and Radiation. He has not started any treatment yet. Smilow is an amazing place there is a whole team reviewing our case.
Kongo- You set me in the right path. Thank you so much.
Rakendra- Your words were inspiring. We have been a lil more accepting of the situation which has allowed us to once again enjoy our lives
hopeful and optimistic – your references are appreciated. I have watched and researched Dr. Kwon. Should the treatment option he chooses does not work and they can’t figure it out we have looked at our options and cost associated with seeing Dr. Kwon.
Samsungtech1 – I wish you the best of luck. We are not so concerned about side effects of RP. The Dr did explain to us if they perform surgery and it spread to nerves they will have to remove nerve as well. Side effects of any treatment aren’t really a concern (we are very creative LOL) having my amazing husband and father of my children safe is my main concern.
Tp23 - I completely understand how you feel, but I have come to realize people just don’t know what to say. I don’t think they mean any harm they just try to throw stats to make people feel better. Good Luck I wish you the best of luck.
Rocky6412 – Thank you. I wish you luck,We are awaiting results on HiRes MRi and 2nd opinion on pathology slides
Kyla74 – I understand how you must feel we are still taking test to make sure the cancer hasn’t spread but his PSA did go up again which is not a good sign. We will have a results and the Board’s recommendation by the end of next week. Its going to be a long journey and if you are interested in having support from another wife going through the same situation send me a message. I know I can use it J
Mounty- We are hoping the PET & MRI are negative. If you did not have these tests I suggest you do. They give a better picture than regular bone scan and CT. A cancer center I found was the best decision. We have a team of different oncologist, medical, radiation, etc. all reviewing his case. I know it must be hard for you and your family. I am glad you have a supportive wife, it is so important during a time like this to know you are not alone. And please let her know she is not alone either; there are other spouses out there and if she ever needs to talk she can message me. I do suggest you research which cancer centers are good for Urology in your area. Thank you for your response and best of luck.
If I had not been so dazzled by your latest post Kc I would have remembered to tell you that PSA readings can spike to high levels as a consequence of a biopsy (something that happened to me) and this is not necessarily a cause for concern. If other factors you and your husband have learned about don't exclude this possibility, you might ask your doctors.
I'm struck by your reference to "our case". No matter how you define marriage, this wording more than anything I know reflects what marriage is all about.
0 -
staying positivekc1033 said:Thank You - Staying Positive
I want to apologize for not responding earlier; I was a little overwhelmed. I want to thank all of you for sharing your experiences with me. I wish you all the best.
Here is the update:
PSA rose to 411, We are still awaiting PET Bone Study & Hi Res MRI results. Biopsy slides are being reviewed by tumor board at Smilow Comprehensive Prostate Cancer Center NYU. We met with a Urological Oncologist and the options so far if PET & MRI come back showing cancer has not spread: Radical Prostatectomy (nerve sparing if possible) and radiation OR Hormone Therapy and Radiation. He has not started any treatment yet. Smilow is an amazing place there is a whole team reviewing our case.
Kongo- You set me in the right path. Thank you so much.
Rakendra- Your words were inspiring. We have been a lil more accepting of the situation which has allowed us to once again enjoy our lives
hopeful and optimistic – your references are appreciated. I have watched and researched Dr. Kwon. Should the treatment option he chooses does not work and they can’t figure it out we have looked at our options and cost associated with seeing Dr. Kwon.
Samsungtech1 – I wish you the best of luck. We are not so concerned about side effects of RP. The Dr did explain to us if they perform surgery and it spread to nerves they will have to remove nerve as well. Side effects of any treatment aren’t really a concern (we are very creative LOL) having my amazing husband and father of my children safe is my main concern.
Tp23 - I completely understand how you feel, but I have come to realize people just don’t know what to say. I don’t think they mean any harm they just try to throw stats to make people feel better. Good Luck I wish you the best of luck.
Rocky6412 – Thank you. I wish you luck,We are awaiting results on HiRes MRi and 2nd opinion on pathology slides
Kyla74 – I understand how you must feel we are still taking test to make sure the cancer hasn’t spread but his PSA did go up again which is not a good sign. We will have a results and the Board’s recommendation by the end of next week. Its going to be a long journey and if you are interested in having support from another wife going through the same situation send me a message. I know I can use it J
Mounty- We are hoping the PET & MRI are negative. If you did not have these tests I suggest you do. They give a better picture than regular bone scan and CT. A cancer center I found was the best decision. We have a team of different oncologist, medical, radiation, etc. all reviewing his case. I know it must be hard for you and your family. I am glad you have a supportive wife, it is so important during a time like this to know you are not alone. And please let her know she is not alone either; there are other spouses out there and if she ever needs to talk she can message me. I do suggest you research which cancer centers are good for Urology in your area. Thank you for your response and best of luck.
Sorry Kc. I think I got carried away in responding to your post earlier because of my admiration for people who care deeply about others, like many of the people participating in this forum. My spouse is also an extraordinary person, as is the case for many spouses married to someone with prostate cancer. I think though that my wife would rather hear that she's doing everything right. This is how I should have responded to your latest post - in my view you and your husband are doing everything right.
0 -
Thank you Mounty for yourMounty said:staying positive
Sorry Kc. I think I got carried away in responding to your post earlier because of my admiration for people who care deeply about others, like many of the people participating in this forum. My spouse is also an extraordinary person, as is the case for many spouses married to someone with prostate cancer. I think though that my wife would rather hear that she's doing everything right. This is how I should have responded to your latest post - in my view you and your husband are doing everything right.
Thank you Mounty for your kind words. i do want to apologize because in no way did I mean to say your wife was doing anything wrong or trying to tell you what you should do. I only made suggestions hoping to help in anyway based off our situation. I have had friends who knew of someone who went here and went there and had it treated this way and thats what my husband should do and if not I'm wrong. I would never want to come across that way to anyone. And I apologize if I did. What I meant was during this whole process I have tried to carry the world on my shoulders, be there for everyone and hold our family together in a time of uncertainty and fear. And through a difficult time like this, where our support, comfort and strength is needed by our husbands, sometimes its good to talk to someone who is in similar pair of shoes. One of the reasons I joined this forum was because I felt that we were alone in this. And seeing so many people give guidance and comforting words and actually taking the time to respond while they are going through their own sitution was amazing to me. Perhaps I was a little overzealous. Once again I apologize. I wish you both the best.
0 -
apologieskc1033 said:Thank you Mounty for your
Thank you Mounty for your kind words. i do want to apologize because in no way did I mean to say your wife was doing anything wrong or trying to tell you what you should do. I only made suggestions hoping to help in anyway based off our situation. I have had friends who knew of someone who went here and went there and had it treated this way and thats what my husband should do and if not I'm wrong. I would never want to come across that way to anyone. And I apologize if I did. What I meant was during this whole process I have tried to carry the world on my shoulders, be there for everyone and hold our family together in a time of uncertainty and fear. And through a difficult time like this, where our support, comfort and strength is needed by our husbands, sometimes its good to talk to someone who is in similar pair of shoes. One of the reasons I joined this forum was because I felt that we were alone in this. And seeing so many people give guidance and comforting words and actually taking the time to respond while they are going through their own sitution was amazing to me. Perhaps I was a little overzealous. Once again I apologize. I wish you both the best.
I'm so sorry Kc - I really botched my last communication. You did nothing wrong and I understood completely what you meant in your earlier post.
Here's what happened: After reading your update of your husband's case I was greatly impressed by how well you are handling what is a difficult and complicated situation. I was especially struck by your no-nonsense, "this is the way it is and this is how we are dealing with the problem" attitude that undoubtedly is helping you and your husband make the right decisions and take appropriate measures to effectively deal with this situation. My wife shares this attitude.
I think the ability to operate under great duress with the calm efficiency displayed in your post is very unusual (although this forum seems full of people with this capability) - hence my first comment. When I reread my comment a short while later, I realized that it might have been more helpful to tell you instead that you are in fact making all the right decisions and pursing the best approaches rather than simply tell you you're extraordinary, which is information that doesn't really help you move further down the road toward solutions. I did not think you were being critical of anyone and I'm very sorry that my awkward wording left the impression that I felt otherwise. I've learned my lesson - in the future I'll stick to the facts.
Very best wishes, and good luck to both of you
0 -
Link to other current thread of same natureMounty said:apologies
I'm so sorry Kc - I really botched my last communication. You did nothing wrong and I understood completely what you meant in your earlier post.
Here's what happened: After reading your update of your husband's case I was greatly impressed by how well you are handling what is a difficult and complicated situation. I was especially struck by your no-nonsense, "this is the way it is and this is how we are dealing with the problem" attitude that undoubtedly is helping you and your husband make the right decisions and take appropriate measures to effectively deal with this situation. My wife shares this attitude.
I think the ability to operate under great duress with the calm efficiency displayed in your post is very unusual (although this forum seems full of people with this capability) - hence my first comment. When I reread my comment a short while later, I realized that it might have been more helpful to tell you instead that you are in fact making all the right decisions and pursing the best approaches rather than simply tell you you're extraordinary, which is information that doesn't really help you move further down the road toward solutions. I did not think you were being critical of anyone and I'm very sorry that my awkward wording left the impression that I felt otherwise. I've learned my lesson - in the future I'll stick to the facts.
Very best wishes, and good luck to both of you
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.9K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 398 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 794 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 63 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 540 Sarcoma
- 734 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards