Newly Diagnosed with Gleason Scores of 9 and 10
Hello...I am a very worried wife whose husband was diagnosed with prostate cancer yeseterday. I have been feverishly reading all I can to understand what he/we are facing. I read through a number of forums last night and found them helpful so I am hoping to get that help and really hopeful for hope!
My husband had 14 core samples biopsied and four of the 14 came back with high Gleason scores (2 were 9, and 2 were 10). His PSA is 5.4. His pathology report does show one of the core samples as "Perineural Invasion is Identified" and another had "Tumor has Signet Ring Appearance". A bone scan and CT scan are scheduled for two weeks from today. Cancer is found in right lobe only.
Can anyone give me any experience on a similar set of circumstances, or at least having some of the same numbers/pathology findings as my husband? We live in Central Illinois and are considering getting a second opinion from John Hopkins second opinion service...any thoughts or recommendations will be greatly appreciated.
Thank you!
Comments
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Serious and difficult case
I am sorry for the diagnosis. It seems that your husband is confronting a serious difficult case. As you probably know by now, Signet Ring PCa tumours are aggressive and linked to metastases and generally associated with poorer prognosis. Gleason score 10 (5+5) is the highest in aggressivity that typically produce smaller amounts of PSA serum. You should consider treatment the earliest. You can read details of this type of cancer in this link;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2996149/
John Hopkins is one of the best for a second opinion on PCa diagnosis. You can ask them to recheck the biopsy slides too. In any case it may be wise to be prepared for the meeting with a list of "educated" questions. The bone scan and CT will add info on the status but these exams are typically negative if the tumour is small in size (< 1cm). You may inquire at JH for better exams with PET/MRI scans.
I would recommend you to google on treatments for PCa and about their side effects. Gleason 10 cases are typically linked to metastases. That means lesser probability for a contained case to which surgery may not assure cure. However, due to the aggressivity of the cancer, surgery may be an option to debulk the biggest tumour followed by a protocol of radiation. Chemotherapy has relatively poor curative efficacy in Signet Ring PCa. I wonder if you should start already a protocol of hormonal therapy while waiting for additional consultations and exams.
Can you share more details on your husband. What is his age? Were there any symptoms? What cause himto do the biopsy?
Here are some reading materials to help you;
http://csn.cancer.org/node/224280
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor
http://www.lef.org/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01
Best wishes and luck in his journey,
VGama
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More Information for youVascodaGama said:Serious and difficult case
I am sorry for the diagnosis. It seems that your husband is confronting a serious difficult case. As you probably know by now, Signet Ring PCa tumours are aggressive and linked to metastases and generally associated with poorer prognosis. Gleason score 10 (5+5) is the highest in aggressivity that typically produce smaller amounts of PSA serum. You should consider treatment the earliest. You can read details of this type of cancer in this link;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2996149/
John Hopkins is one of the best for a second opinion on PCa diagnosis. You can ask them to recheck the biopsy slides too. In any case it may be wise to be prepared for the meeting with a list of "educated" questions. The bone scan and CT will add info on the status but these exams are typically negative if the tumour is small in size (< 1cm). You may inquire at JH for better exams with PET/MRI scans.
I would recommend you to google on treatments for PCa and about their side effects. Gleason 10 cases are typically linked to metastases. That means lesser probability for a contained case to which surgery may not assure cure. However, due to the aggressivity of the cancer, surgery may be an option to debulk the biggest tumour followed by a protocol of radiation. Chemotherapy has relatively poor curative efficacy in Signet Ring PCa. I wonder if you should start already a protocol of hormonal therapy while waiting for additional consultations and exams.
Can you share more details on your husband. What is his age? Were there any symptoms? What cause himto do the biopsy?
Here are some reading materials to help you;
http://csn.cancer.org/node/224280
http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor
http://www.lef.org/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01
Best wishes and luck in his journey,
VGama
VGama,
Thank you for your comments, though it isn't what I wanted to hear.
My husband is young...60 years old. Symptoms were frequency with urniation and some hestitantcy before going. The cause to do the biopsy was an increasing PSA score and we had a PHI test done has well which came back on the "higher end than normal". From there, the biopsy was done.
In reference to the JHU second opinion, do you feel it would be wise to go ahead and see about sending the biopsy slides before we have the results of the scans?
Thank you...I appreicate your help and information.
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A bit more info
Absolutely no family history of prostrate or any other cancers.
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My Idea
So very often, I have seen a post like yours, and like all on this board, our hearts go out to you. Even though your case is serious, no case is without hope. Sometimes the most difficult cases do turn around and survive. But that is not my message. Often the only direction taken is about treatment and survival time to increase. What is left out is what is going to occur in the time that is left, even if that time is not to be long. I feel that it is equally, or even more important to focus on the present moment and to make whatever time is left the most important time of you and your husband's life. You can pursue all kinds of treatments with very severe side effects that may or may not be effective. You have no idea of the future or how much time you have left. But what you do have is THIS MOMENT. I suggest you focus also on the time you have left and make that time the most valuable time of your life together. Often the treatment will destroy the quality of life and deprive you of quality of time together. Please research all treatments offered. Often doctors do not fully explain the odds. Often the treatment is worse than the cancer, and the promised life extension is not backed by facts, or is only a few months. And then the patient is so sick that the time left comes to have little value. It is not for us to decide how long we are to be on this planet; it is for us to decide how well we use that time and how grateful we are for all we are given.
Love, Swami Rakendra
PS: This will be a very unpopular suggestion on this board. I suggest you research Food Grade Hydrogen Peroxide. I do not have definitive proof that this can be successful, but I have seen cases here that have been much improved.
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No family history of cancers is not typical in Signet Ring cases
I absolutely agree with you in sending now (today) the biopsy slides for JH examination before consulting. The critical aspect of his diagnosis is the comment from the pathologist that "Tumor has Signet Ring Appearance". What does he mean by "appearance"? Isn't he sure?
You need to confirm this diagnosis before the consultation to get the best second opinion. Your added comment regarding "no family history of prostrate or any other cancers" puts in doubt the existence of Signet Ring type cancer (which typically is linked to hereditary mutations). The treatment could have a different protocol which could include chemo and refined drugs such as Zytiga, etc. Proper diagnosis leads to proper treatment and better outcomes. This includes the scans your husband will do. Surely the bone scan and CT are not the most appropriate for a Gleason 10 case but these image exams are important and add info to the diagnosis. Try sending these results before or have in hand (copies) for the time of the consultation too.
Best wishes in this difficult moment of your life.
VGama
A Note to Rakendra: Your posts are always appreciated. This one above is simple beautiful and amazing. I would miss your concise and perception of life.
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SeriousGleason Score 9 and 10 said:More Information for you
VGama,
Thank you for your comments, though it isn't what I wanted to hear.
My husband is young...60 years old. Symptoms were frequency with urniation and some hestitantcy before going. The cause to do the biopsy was an increasing PSA score and we had a PHI test done has well which came back on the "higher end than normal". From there, the biopsy was done.
In reference to the JHU second opinion, do you feel it would be wise to go ahead and see about sending the biopsy slides before we have the results of the scans?
Thank you...I appreicate your help and information.
Score 9,
Vasco has got you rolling in the right directions (you can always count on that !). Gleason 10 biopsy reports here are rare. The patholgy review at Johns Hopkins is highly advisable. At 14 cores, his doctor was being thorough.
I will just add a few comments regarding liklihoods: Metastatic PCa (prostate cancer) is ordinarily treated first-line (initially) with radiation, with or without HT (hormonal therapy), but HT is almost certainly in the cards for him also. Sometimes, chemo is done initially to beat back the disease, but guys report this less than half the time. Surgery is rare in cases such as your husband's, but as Vasco noted, is performed in some cases. In metastatic disease, surgery is never curative but can assist.
What has some possibility of being curative (totally eliminating the cancer) is radiation, but I am spepaking only in the realm of clinical possibilities, not what will transpire in his particual case. HT, like surgery, is not curative of metastatic PCa, but can control it in most cases, often for a decade or more.
"Perineural involvement" means that it appears cancer may have escaped along nerve bundles that go through the gland.
This is all still informed speculation at this point. He will need an expert medical oncologist, well experienced specifically in PCa: medical oncologists are doctors who treat via drugs, such as the chemo and HT. Urologists are ordinarily not the best at this, although many do administer HT. Of course there undoubtedly exists that rare urologist that is also Board Certified in medical oncology, but that is rare indeed.
I hope you share developments, since his case is an uncommon one. Several regular writers here began their PCa experience with metastatic disease and Gleasons of 9, and have done well for a long time, so do maintain hope. In the US, men who present initially with metastatic, Stage IV PCa have an average life expectanccy of over five years. This is astonishingly long, compared to the many more deadly cancers out there. And, with well administered HT, that is often extended to a decade or even longer than that. I mention these data points only because I know that people newly diagnosed in any cances ask these things first, but know that statistics only show averages, not what will happen to any individual patient. Plus, it is not confirmed that he is metastatic yet anyway.
You seem remarkably conversant already, which makes me believe perhaps you are a nurse or medical practicioner. If not, then you are extraodinarily bright !
Lots yet to be established,
max
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Hi Max,Serious
Score 9,
Vasco has got you rolling in the right directions (you can always count on that !). Gleason 10 biopsy reports here are rare. The patholgy review at Johns Hopkins is highly advisable. At 14 cores, his doctor was being thorough.
I will just add a few comments regarding liklihoods: Metastatic PCa (prostate cancer) is ordinarily treated first-line (initially) with radiation, with or without HT (hormonal therapy), but HT is almost certainly in the cards for him also. Sometimes, chemo is done initially to beat back the disease, but guys report this less than half the time. Surgery is rare in cases such as your husband's, but as Vasco noted, is performed in some cases. In metastatic disease, surgery is never curative but can assist.
What has some possibility of being curative (totally eliminating the cancer) is radiation, but I am spepaking only in the realm of clinical possibilities, not what will transpire in his particual case. HT, like surgery, is not curative of metastatic PCa, but can control it in most cases, often for a decade or more.
"Perineural involvement" means that it appears cancer may have escaped along nerve bundles that go through the gland.
This is all still informed speculation at this point. He will need an expert medical oncologist, well experienced specifically in PCa: medical oncologists are doctors who treat via drugs, such as the chemo and HT. Urologists are ordinarily not the best at this, although many do administer HT. Of course there undoubtedly exists that rare urologist that is also Board Certified in medical oncology, but that is rare indeed.
I hope you share developments, since his case is an uncommon one. Several regular writers here began their PCa experience with metastatic disease and Gleasons of 9, and have done well for a long time, so do maintain hope. In the US, men who present initially with metastatic, Stage IV PCa have an average life expectanccy of over five years. This is astonishingly long, compared to the many more deadly cancers out there. And, with well administered HT, that is often extended to a decade or even longer than that. I mention these data points only because I know that people newly diagnosed in any cances ask these things first, but know that statistics only show averages, not what will happen to any individual patient. Plus, it is not confirmed that he is metastatic yet anyway.
You seem remarkably conversant already, which makes me believe perhaps you are a nurse or medical practicioner. If not, then you are extraodinarily bright !
Lots yet to be established,
max
Hi Max,
Thanks for your comments, and most of all offering hope. These initial stages are incredibly frightening to say the least. Reading some of the information on different, ruputable sites offers a lot of information some of which piecing together, are helpful and other scare you to death...I understand that this jouney will offer both.
We have decided to move ahead with the JHU second opinion and by the end of this weekend, will have our "ducks in a row" to get that ball rolling, as we could at least have some additional information by the time he has the bone scan and CT. As Vasco stated in a post below, I am a bit skeptical of the Signet rings "appearance" comment...like Vasco, I wondered if they didn't know if that's what was detected or not. In reading about the surgurical/urological pathologists that will review the information at JHU, I am holding out some hope for clarification in this area.
Here is some additional information that the doctor (who is a board certified urologist) regarding his opinion on the diagnosis: he said there are three factors to consider when initially looking at prostate cancer (not necessarily in this order - just recounting what he said), PSA Score, Gleason Score, and the percentage of affected samples compared to the overall number of samples taken. He said my husband's affected samples are confined to the right lobe. He said depending on the outcomes of the bone scan and CT scan, in all liklihood we would be looking at surgery and/or radiation. Although nothing was mentioned about HT at this point, it seems like from reading this disussion board, a lot of men end up on this trajectory.
When you stated, "Perineural involvement" means that it appears cancer may have escaped along nerve bundles that go through the gland." Does this necessarily mean metatasis? If not, can you share more specifically what you mean?
I will definitely try to share his developments, as you all have been so helpful to me in these very early stages, so I am hopeful I too can help someone else, and share good news on outcomes!
I am not in the medical field...I have just been involved with a family member years back with cancer, and managed my parents' healthcare into their elderly years, so I have gotten pretty good at reading, understanding, and constantly asking questions to be sure I understand. That is what has been so hard thus far...I need to ask more questions, which is something my husband understands and supports. We are gathering a number of questions we will be sending to the docs office later today via email.
Thanks again, so very much, for some hope. I have always been a "glass half full person (really 3/4 full)" and I need some of that now thrown at me from all sources whenever it is attatched to something that is hopeful.
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You are so right!Rakendra said:My Idea
So very often, I have seen a post like yours, and like all on this board, our hearts go out to you. Even though your case is serious, no case is without hope. Sometimes the most difficult cases do turn around and survive. But that is not my message. Often the only direction taken is about treatment and survival time to increase. What is left out is what is going to occur in the time that is left, even if that time is not to be long. I feel that it is equally, or even more important to focus on the present moment and to make whatever time is left the most important time of you and your husband's life. You can pursue all kinds of treatments with very severe side effects that may or may not be effective. You have no idea of the future or how much time you have left. But what you do have is THIS MOMENT. I suggest you focus also on the time you have left and make that time the most valuable time of your life together. Often the treatment will destroy the quality of life and deprive you of quality of time together. Please research all treatments offered. Often doctors do not fully explain the odds. Often the treatment is worse than the cancer, and the promised life extension is not backed by facts, or is only a few months. And then the patient is so sick that the time left comes to have little value. It is not for us to decide how long we are to be on this planet; it is for us to decide how well we use that time and how grateful we are for all we are given.
Love, Swami Rakendra
PS: This will be a very unpopular suggestion on this board. I suggest you research Food Grade Hydrogen Peroxide. I do not have definitive proof that this can be successful, but I have seen cases here that have been much improved.
Rakendra,
Thank you so much for your positive comments. To add to the importance of what you have stated...my husband and I talked the other day that in life there are times that things happen that bring us back to our "core" (absolutely no pun intended!)...make us really remember what is important, discard all the "white noise" and really spend time where it is most important. My husband's feeling is this is a "blessing in disguise". We are very good and mindful about spending time in the moment, but we spend a lot of time looking forward too. Believe me, I am focussing on today with my husband.
I really appreciate this type of reminder...we all need it from time to time!
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Glad to Hear Your News on Signet Ring Cases
VGama,
Thank you for your added comments regarding the Signet Ring Cases and no family history as well as your comments on the slides. From what I can see we can inititate that effort on JHU website and plan to get it started by the end of this weekend for sure. When I read the pathologist's comment about "appearance" I wondered what in the world that meant as well. It didn't sound definitive to me either, so to hear you offer that similar question is comforting.
You mention that bone scans and CTs are not the most appropriate next test steps...in your opinion what is...PET, MRI?
Thanks again for your comments and information...please share all you can!
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Right decision
I second the decision to consult with the Johns Hopkins specialists. Hopefully, this will bring clarification regarding the 'Signet Ring' issue as well.
Regarding perineural invasion, it's my understanding that this only means that there is a POSSIBILITY that cancer cells have escaped the prostate.
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DefinitionOld Salt said:Right decision
I second the decision to consult with the Johns Hopkins specialists. Hopefully, this will bring clarification regarding the 'Signet Ring' issue as well.
Regarding perineural invasion, it's my understanding that this only means that there is a POSSIBILITY that cancer cells have escaped the prostate.
G.S. 9,
Dr Peter Scardino, chief of surgery at Sloan-Kettering Cancer Center, defines "perineural invasion" (PNI) as The spread of prostate cancer into the sheath surrounding the prostate nerves. ( Dr Peter Scardino's Prostate Book, p.540 )
I agree with Old Salt's take on this definition. You husband has a lot of scanning and diagnosis yet to be performed, and whether significant escape has yet occured is, as we noted, yet to be firmly established. His urologist-surgeon seems to be onf the opinion that it probably has NOT wandered off the reservation yet. Among the three diagnostic factors the urologist mentioned, they are ordinarily set in priority as Gleason most critical, PSA second, and volumetric involvement third. But all are important, and constitute an aggregate to assess by the professionals involved.
I recommend that you get Dr. Scardino's book, as it is both a readable Introduction to the subject, yet well detailed. I would say he is very impartial in it, not biased to surgery over radiation and such. It reviews every form of treatment chapter-length, and lists alll common pros and cons for each. It is a regular-stock item at Barnes and Noble, as well as at Amazon.
Relax, and have a good weekend ("relax means do not go near a mall" !). Your learning curve is among the best seen here,
max
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Thank you!
Thank you, Max! Again, I really appreciate it! I have no intention of going near a mall! Walgreens is even busy...and I am ready to be "at the corner of happy and healthy"!!!!!!!
Thanks for your information on the definition and on the recommendation for the book! I will definitely buy it!
I will check back when I have more questions and definitely when we get more information. Right now, his scans are scheduled for a couple of weeks from now as well as the follow up appointment with the doc the same day. Hoping to have some information back from JHU around the same time too.
Thank you again...I am going to try to relax while even NOT being at the mall!
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Appreciate the FeedbackOld Salt said:Right decision
I second the decision to consult with the Johns Hopkins specialists. Hopefully, this will bring clarification regarding the 'Signet Ring' issue as well.
Regarding perineural invasion, it's my understanding that this only means that there is a POSSIBILITY that cancer cells have escaped the prostate.
Hi Old Salt,
Thanks for your comments and backing us up on the decision to to consult with JHU. I also appreciate the information on the perineural invasion...I am working to keep the faith on it only being a POSSIBILITY!
Much appreciated.
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C11 choline or F18 choline PET/CT exam
Gs9
I would recommend you to chose PET and MRI to define the clinical stage of your husband. These together with a choline base contrast agents can detect small sized tumours of 5mm therefore with lesser probability for false negatives.
When diagnosing a patient with prostate cancer, doctors look for the PSA, DRE, biopsy, symptoms and image studies. With this "collection" of data they provide a clinical stage and recommend a treatment. Your doctor is just following this typical sequential. He is waiting for the image studies to confirm the extent of the disease and qualify the case; contained, localized or with lymph nodes and bone involvement. When the image exam is negative one may assume to have a contained case. The doctor would most probably recommend surgery, however, if the case presents metastases then radiation (alone) or a combination of surgery plus radiation would be more appropriate (localized case).
Here is reading material regarding the image exams. Hope the doctor accepts it;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373349/
In this video you can listen about image capabilities;
https://www.youtube.com/watch?v=VaGnuiVvfGY
Best,
VG
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Additional Information HelpfulVascodaGama said:C11 choline or F18 choline PET/CT exam
Gs9
I would recommend you to chose PET and MRI to define the clinical stage of your husband. These together with a choline base contrast agents can detect small sized tumours of 5mm therefore with lesser probability for false negatives.
When diagnosing a patient with prostate cancer, doctors look for the PSA, DRE, biopsy, symptoms and image studies. With this "collection" of data they provide a clinical stage and recommend a treatment. Your doctor is just following this typical sequential. He is waiting for the image studies to confirm the extent of the disease and qualify the case; contained, localized or with lymph nodes and bone involvement. When the image exam is negative one may assume to have a contained case. The doctor would most probably recommend surgery, however, if the case presents metastases then radiation (alone) or a combination of surgery plus radiation would be more appropriate (localized case).
Here is reading material regarding the image exams. Hope the doctor accepts it;
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373349/
In this video you can listen about image capabilities;
https://www.youtube.com/watch?v=VaGnuiVvfGY
Best,
VG
VGama,
Thank you again for the resources and the information. It is definitely helpful and certainly adds to the questions we can ask and also know what to expect. It is also nice to hear you feel the doc is following typical sequence of diagnotic procedures.
Enjoy the weekend!
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The PET and MRI exams that
The PET and MRI exams that Vasco discussed are the preferred imaging tests, and will provide higher resolution than the CT . These tests are preferred over The CT scan. I suggest that you arrange for these tests instead of the CT . The bone scan that is ordered is an appropriate test for aggressive diagnosis.
You find having base line tests such as a bone density test, testosterone level, and blood panel tests will be useful in monitoring your husbands treatments.
P.S. Having a colonoscopy before any radiation can also be considered.
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Thank you...further questionhopeful and optimistic said:The PET and MRI exams that
The PET and MRI exams that Vasco discussed are the preferred imaging tests, and will provide higher resolution than the CT . These tests are preferred over The CT scan. I suggest that you arrange for these tests instead of the CT . The bone scan that is ordered is an appropriate test for aggressive diagnosis.
You find having base line tests such as a bone density test, testosterone level, and blood panel tests will be useful in monitoring your husbands treatments.
P.S. Having a colonoscopy before any radiation can also be considered.
Thank you for your comments. We plan to definitely ask about the PET and MRI scans for sure. What is your thinking behind a colonoscopy before any radiation?
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colonoscopyGleason Score 9 and 10 said:Thank you...further question
Thank you for your comments. We plan to definitely ask about the PET and MRI scans for sure. What is your thinking behind a colonoscopy before any radiation?
Simply, if you need a colonoscopy..do before radiation since potential side effects from radiation can make a colonoscopy difficult.
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Family LongevityVascodaGama said:No family history of cancers is not typical in Signet Ring cases
I absolutely agree with you in sending now (today) the biopsy slides for JH examination before consulting. The critical aspect of his diagnosis is the comment from the pathologist that "Tumor has Signet Ring Appearance". What does he mean by "appearance"? Isn't he sure?
You need to confirm this diagnosis before the consultation to get the best second opinion. Your added comment regarding "no family history of prostrate or any other cancers" puts in doubt the existence of Signet Ring type cancer (which typically is linked to hereditary mutations). The treatment could have a different protocol which could include chemo and refined drugs such as Zytiga, etc. Proper diagnosis leads to proper treatment and better outcomes. This includes the scans your husband will do. Surely the bone scan and CT are not the most appropriate for a Gleason 10 case but these image exams are important and add info to the diagnosis. Try sending these results before or have in hand (copies) for the time of the consultation too.
Best wishes in this difficult moment of your life.
VGama
A Note to Rakendra: Your posts are always appreciated. This one above is simple beautiful and amazing. I would miss your concise and perception of life.
Hi VGama,
Just thought I would also mention in addition to no family history, it is worthy to say that my father-in-law lived until 95...in good health until the last three weeks of life, and my mother-in-law lived until 93. She had Alzheimers, diagnosed around the age of 90. My father-in-law had an "age appropriate" elevated PSA level, but never diagnosed, nor any biopsy needs, etc. with prostate cancer. I have two brothers-in-laws, one in his 70s with low PSA scores and the young in his late 50s who doesn't seek much medical testing/prevention/etc.
....just added thoughts in the no family history arena.
Thanks.
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Colonoscopy up-to-datehopeful and optimistic said:colonoscopy
Simply, if you need a colonoscopy..do before radiation since potential side effects from radiation can make a colonoscopy difficult.
Thanks...my husband has had colonoscopies, both with good results and isn't due for a while, but will certainly think about your advice. Thank you, again!
0
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