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Post by jinxmom2003 on Oct 6, 2014 1:46:13 GMT
My 49-year-old son was just diagnosed with stage 4 prostate cancer with three lymph nodes in the abdomen involved. Looks like no organs or bone metastases. Please share stories of what we may expect.
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Post by holly on Oct 6, 2014 1:51:08 GMT
No experience, but I'm so sorry. I hope he kicks cancer's ass!
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Post by jinxmom2003 on Oct 6, 2014 2:14:30 GMT
That is our prayer.
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maurchclt
Pearl Clutcher
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Post by maurchclt on Oct 6, 2014 2:26:44 GMT
Just Hugs and Prayers.
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maurchclt
Pearl Clutcher
Posts: 3,654
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Post by maurchclt on Oct 6, 2014 2:27:17 GMT
Just Hugs and Prayers.
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Post by anonrefugee on Oct 6, 2014 13:41:08 GMT
No experience, but I'm so sorry. I hope he kicks cancer's ass! Repeating this!!! |
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Post by BeckyTech on Oct 6, 2014 14:15:43 GMT
He's probably looking at surgery, but if I were you I'd probably try for a consult with Dr. Charles "Snuffy" Myers. He specializes in advanced cases of prostate cancer and keeps up on all the latest treatments and happenings in that world. He is also a prostate cancer survivor. Call the phone number on his website. Did your husband have prostate cancer? It runs in families, so the male relatives on that side of the family would do well to get early screenings. If he has any brothers, they definitely need to get screened. Early screening saves lives. Prostate cancer caught early is very treatable. I'm normally an advocate of proton treatment for prostate cancer, but I'm not sure that's possible with an advanced case like this. Prayers, and please let us know how it goes. |
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NoWomanNoCry
Drama Llama
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Post by NoWomanNoCry on Oct 6, 2014 14:29:36 GMT
No experience. Prayers for him and you. *hugs*
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Post by librarylady on Oct 6, 2014 14:33:40 GMT
Yikes........sounds like grim days ahead.
Some types of prostate cancer respond better to treatment.
I know someone who was diagnosed at a late stage like this. He has had surgery, chemo and radiation. He is still alive 4 years later and is able to have a fair quality of life. He wears depends after all the treatments....walks with a cane, but can help his wife with estate sales (their business).....so........
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Post by mommaho on Oct 6, 2014 14:35:11 GMT
Hugs and prayers for you and your family - CANCER SUCKS - KICK CANCERS ASS!
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Post by sphmaz on Oct 6, 2014 14:35:27 GMT
My Dad was diangnosed with stage 4 prostate cancer 3 years ago. He had surgery to remove the prostate. He went for testing every 3 months (I think, I can't remember all the details) and in the summer of 2013 he underwent radiation as his PSA levels had gone back up. He was just told this past summer that he is cancer free.
Sending prayers and positive thoughts to your son that he kicks this!
Sue
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mimima
Drama Llama
Stay Gold, Ponyboy
Posts: 5,213
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Post by mimima on Oct 6, 2014 14:42:17 GMT
Prayers
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Post by BeckyTech on Oct 6, 2014 14:56:16 GMT
Yikes........sounds like grim days ahead. Some types of prostate cancer respond better to treatment. I know someone who was diagnosed at a late stage like this. He has had surgery, chemo and radiation. He is still alive 4 years later and is able to have a fair quality of life. He wears depends after all the treatments....walks with a cane, but can help his wife with estate sales (their business).....so........ The problem with surgery is the side effects can be devastating: ED, diapers, and so on. Plus it does not treat the prostate bed which is where a great deal of recurrences happen. It is for all those reasons that I advocate proton - they can treat not only the prostate, but a comfortable margin around the organ, including the prostate bed. Plus, unlike conventional radiation, the problem with secondary cancers is eliminated. Again, early detection and treatment are key here. jinxmom2003, it wouldn't hurt to find out if a mixed protocol would be possible. The people to contact would be Loma Linda, they pioneered proton treatment in a hospital-based setting and in more advanced cases often do a mixed protocol. But I really don't have the knowledge to advise on this. The fact that there is no bone metastases is very hopeful. |
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Mystie
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Post by Mystie on Oct 6, 2014 15:05:36 GMT
My dad had prostate cancer about ten years ago, but his was caught very early and he recovered well. I don't have any experience with late-stage prostate cancer, but I hope and pray your son will get the very best treatment and be able to make a full recovery. Cancer is so awful, I am sorry.
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Post by jamielynn on Oct 6, 2014 15:07:46 GMT
Look at University of Florida Jacksonville. They have an incredible non-invasive treatment that is close to 100% cure rate.
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River
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Jun 26, 2014 15:26:04 GMT
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Post by River on Oct 6, 2014 15:14:00 GMT
No advice but wanted to send hugs and many prayers.
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Post by houston249 on Oct 6, 2014 15:17:35 GMT
The only experience I have is with the 2 different radiation methods used, traditional and proton. Both have the same "cure" success rate. What is different is the longterm AFTER effects of radiation. With proton, the aftereffects are greatly reduced, in our case by 80%. Depending on where the radiation is concentrated and directed, this can make a world of difference in the quality of life and furture radiation induced health problems a patient has to deal with after the treatment is over. Fyi-We were part of the longterm (i think still on going) study.
Over 70% of proton patients are prostate patients.
When we were there, the evaluation process was VERY quick, efficent and informative. The way they handled the insurance companies was amazing. We knew within the hour exactly what our insurance covered and the cost to the penny. When I questioned our insurance companies response (Actually I was stunned at the response time, minutes vs the last 20 'years of we dont know). The finance officer called that second, on speaker phone to make sure we were assured and informed. Fyi- the treatment was a package deal, they cut no corners and we were at the Jacksonville facility. The facility was completely forth coming on any and all, negitive and positive parts of treatment and its outcome. No guessing games at all. They had patients from all over the world. Most of the patients were of modest means. Those modest means patients were from all over the country.
I read the reference above. Frankly I would call both facilities. All cases are different and need different treatment plans. The more info you all have, the happier you all will be. I do know the Jax facility will let a patient know if surgery is a better option (they dont do surgery, but do work with ANY surgeon). They are more concerned with a successful outcome for their patients vs making money.
Prayers for your sons health and happiness.
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Post by jinxmom2003 on Oct 6, 2014 15:29:55 GMT
Thanks for all the great responses. Prayers and hugs are most awesome right now. The best news or the very good news at least is that my son lives in Rochester Minnesota and so has access to the Mayo medical establishment. They're being very quick to act and proactive as much as they can be so we try to remain hopeful
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Post by Karenina on Oct 6, 2014 15:37:05 GMT
I don't have any advice, but I hope you and your son pull through this!! Hugs
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Post by eebud on Oct 6, 2014 15:39:48 GMT
My Dad was diangnosed with stage 4 prostate cancer 3 years ago. He had surgery to remove the prostate. He went for testing every 3 months (I think, I can't remember all the details) and in the summer of 2013 he underwent radiation as his PSA levels had gone back up. He was just told this past summer that he is cancer free. Sending prayers and positive thoughts to your son that he kicks this! Sue Are you sure he had Stage 4 cancer? Stage 4 is when the cancer has moved into other organs or tissues and beyond the seminal vesicles. I would be very surprised if they did nothing more than remove the prostate and didn't immediately follow up with radiation or other treatment. I wonder if maybe his Gleason score was a 4 instead of being Stage 4 prostate cancer. Stage 4 can have a low Gleason score but I think it will usually be much higher......highest Gleason score being a 10. OP, I don't know where your son lives but I would definitely have him look into Proton Therapy like BeckyTech was talking about. The only problem with Proton therapy is that there are only about 12-15 locations currently in the US. I believe, like other radiation, the patient is treated about 5 days a week for about 2 months. This is a very precise form of radiation with the least number of side affects. However, it is typically used when it has not spread to other parts of the body so I am not sure if it will be an option for your DS. If it is something the doctors can try, your DS might need to move for a couple of months for treatment if he is not in an area with a Proton treatment hospital. One thing to also keep in mind.................generally speaking, prostate cancer is one of the most curable cancers. It is also generally considered a very slow growing cancer. Many men will get prostate cancer and live for many years with it and die at an old age from something totally unrelated. They say that more men will die WITH prostate cancer than BECAUSE of prostate cancer. Because of this, you will probably get many people who will question whatever course of action your DS decides to take to treat his cancer. But, most of these people are ones that don't realize that the person(s) they knew had an early stage, maybe only a couple of the biopsy tissue samples coming back with any cancer at all (there are typically 12 samples when they biopsy) and those that did come back with cancer, were low percentages of the tissue. In other words, they probably had a number of years that they could just monitor things and not do anything, including surgery, radiation or any sort of treatment. Maybe their cancer was completely contained inside the prostate. Everyone's case is different and at different stages. Your DS may be at a stage where he has to go with more extreme treatment options. Less invasive might not be doable. He obviously needs to understand the side affects from the different options available so that he can make an informed decision. So, my main advise is to limit the number of people he talks to about this because it can really screw with his emotions and he will start 2nd guessing decisions that he makes. And last, ALWAYS get a 2nd or even a 3rd opinion for whatever treatment he is considering. For the 2nd or 3rd opinions, I would also go outside of the network of doctors that you initially deal with so that you will know that the doctor giving the 2nd/3rd opinion is doing so based only on test results. |
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Post by eebud on Oct 6, 2014 15:49:07 GMT
Here are the locations that currently have Proton therapy or are building a center. Proton Therapy |
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Post by lindah on Oct 6, 2014 15:52:34 GMT
My dh was diagnosed almost 2 yrs ago with prostate cancer. His options were to have surgery or external or internal radiation. He chose to have radioactive "seeds" implanted, which "are his to keep." He is now cancer free, & is expected to remains so & his PSA remains at almost zero.
Most men will die with prostate cancer but not from it.
Prayers for your son, OP.
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Post by jinxmom2003 on Oct 6, 2014 17:08:16 GMT
Here are the locations that currently have Proton therapy or are building a center. Proton TherapyThanks eebud, I see Mayo is on the list to open soon. |
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Post by eebud on Oct 6, 2014 17:15:45 GMT
Here are the locations that currently have Proton therapy or are building a center. Proton TherapyThanks eebud, I see Mayo is on the list to open soon. Your DS should be able to have a consultation quickly to find out if Proton Radiation Therapy is an option for him. It might not be due to the cancer no longer being only in the prostate area. Or, maybe Proton Radiation can be used along with other treatment to get where the cancer has spread. |
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Post by BeckyTech on Oct 6, 2014 21:28:22 GMT
eebud, you may be on to something, the 4 may be part of the Gleason Score or PSA. Yes, the University of Florida at Jacksonville is another excellent proton facility. As a matter of fact, Dr. Nancy Mendenhall there has spearheaded some important studies, including one published recently in Internal Journal of Radiation Oncology about the 5 year outcomes from 3 groups of patients who received proton treatment for prostate cancer (low, medium, and high risk). MD Anderson in Texas is another experienced proton center. As mentioned, there are several around the country. Proton treatment is great for many types of cancers where there is a well-defined tumor or area to treat. The reason is because it is dimensional: it releases the payload at the tumor site, sparing healthy tissue going in and coming out. Considering the proximity of the prostate to other essential organs, this is important. The sparing of healthy tissue is also why it is a desirable treatment for pediatric cancers, as well as head and neck areas. A few places are also finishing up studies on proton for breast cancers. 1 in 6 men will get prostate cancer. There are many different types - some are very aggressive, some less so, but all men should be tested because it is so treatable if treatment is needed. I wish it got as much exposure as breast cancer. 1 in 6 men, ladies, that's a lot. This 1 minute 40 second video explains how proton differs from other types of radiation: Another prostate proton site that might be helpful: ProtonBob.com
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Post by jinxmom2003 on Oct 7, 2014 1:03:29 GMT
BeckyTech-You are awesome. Such good information to pass on. Right now the plan of attack is six weeks of anti-androgen hormone therapy to shrink the tumor followed by surgery in mid November to remove the tumor and the affectted lymph nodes also to see if there are any other things that need to come out. Determination will be made after that as to what the next step would be whether some type of radiation or chemo therapy he is young and healthy otherwise.
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Post by jamielynn on Oct 7, 2014 2:10:00 GMT
The only experience I have is with the 2 different radiation methods used, traditional and proton. Both have the same "cure" success rate. What is different is the longterm AFTER effects of radiation. With proton, the aftereffects are greatly reduced, in our case by 80%. Depending on where the radiation is concentrated and directed, this can make a world of difference in the quality of life and furture radiation induced health problems a patient has to deal with after the treatment is over. Fyi-We were part of the longterm (i think still on going) study. Over 70% of proton patients are prostate patients. When we were there, the evaluation process was VERY quick, efficent and informative. The way they handled the insurance companies was amazing. We knew within the hour exactly what our insurance covered and the cost to the penny. When I questioned our insurance companies response (Actually I was stunned at the response time, minutes vs the last 20 'years of we dont know). The finance officer called that second, on speaker phone to make sure we were assured and informed. Fyi- the treatment was a package deal, they cut no corners and we were at the Jacksonville facility. The facility was completely forth coming on any and all, negitive and positive parts of treatment and its outcome. No guessing games at all. They had patients from all over the world. Most of the patients were of modest means. Those modest means patients were from all over the country. I read the reference above. Frankly I would call both facilities. All cases are different and need different treatment plans. The more info you all have, the happier you all will be. I do know the Jax facility will let a patient know if surgery is a better option (they dont do surgery, but do work with ANY surgeon). They are more concerned with a successful outcome for their patients vs making money. Prayers for your sons health and happiness. This is basically the well typed response of my "call Jax comment." We have nothing but great things to say about proton and ufl-Jax. |
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Post by jamielynn on Oct 7, 2014 2:12:15 GMT
Thanks for all the great responses. Prayers and hugs are most awesome right now. The best news or the very good news at least is that my son lives in Rochester Minnesota and so has access to the Mayo medical establishment. They're being very quick to act and proactive as much as they can be so we try to remain hopeful They are in the process of putting in a proton therapy center. I want to say it is costing them $40 million! I can attest to their diagnosis/treatment center being just incredible as well. The way they operate there is just beyond words; he's a lucky guy to live so local! |
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Post by iamkristinl16 on Oct 7, 2014 2:34:53 GMT
I don't have any advice but wanted to say that I am hoping the best for your son. Sending hugs your way!
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Post by BeckyTech on Oct 7, 2014 5:48:51 GMT
jinxmom2003, the bottom line is to take control and educate yourself on all possible options. Second, third, and even fourth opinions are golden. Don't take one (or even two) doctors' word for what is the best treatment on a major diagnoses like this. Do your own research giving the appropriate weight to the sources you find. What we learned is that surgeons will always recommend surgery, radiation specialists always recommend radiology, and treatment centers with multiple options will only offer whatever treatments they have available. All of which may or may not be the best option for you (or your loved one). We took this philosophy and also applied it to our pets. As a result, we still have Kayley with us. Had we not sought a second opinion, she would have had a major event and possibly died within a couple of weeks of her original diagnosis. Actually, we did it again when an operation was suggested. Thankfully, we found out there was a new test that was available and it turned out not to be the type of tumor that would require an operation (which she did not have a good chance of surviving). I'm a big advocate of research and second opinions. 
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