Prognosis
So here it is just three months after my partners diagnosis of prostate cancer, Ive written twice before. I appreciated the feedback in August.
His PSA was at a 11 July 2015. A bioposy wasnt done until May 2016.
Today he has Stage 4 Prostate cancer -Stage 11B ( Tic,NO,MO,G 8) Final Gleason =10
"multiple bone metastases in the spine, ribs, as well as the pelvic bones."
He is a Vietnam Vet , wouldnt they have know to test PSA all along and keep on eye on this as he was sprayed with agent orange? Why did they do nothing and could they have done something in July 2015? The VA doctor said" its just as well it wasnt found earlier because you lived such a high quality of life until now"
( 67yrs).
He is on hormone treatment, chemo ( taxoterne), and has had an immune booster shot. Thats it. They dont say anything about prognosis just what seems like endless chemo ( four more rounds) ,
Can someone please give me some input. Im not sure what Tic, No , Mo, G 8 means. What does prognosis look like ? is there anything that can be done ....
Thank you for your time.
J
Comments
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here is your previous post0
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Very aggressive, unfortunately
Sorry about the diagnosis. Clearly your partner needs very aggressive treatment. The combination of hormone therapy and chemo (six rounds of taxotere) seems appropriate for starters. This will be tough on both of you, but there are various 'tricks' to make the chemo more tolerable. I hope the medical staff has given you help in that respect.
Hopefully the PSA will drop as a result of the treatment. Let's wait for that to happen before considering further approaches to control the cancer.
We, as laypeople, and with only a limited amount of medical information, can't really give a prognosis. As mentioned, let's see if the PSA does drop to very low.
In the meantime, please educate yourself and don't fail to ask further questions.
PS: The diagnosis/staging (T1c, N0, M0) makes no sense considering the metastases. For an explanation, here's a link:
www.cancer.net/cancer-types/prostate-cancer/stages-and-grades
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Must wait
As Old Salt noted, you will have to wait a bit to see how successful the treatments are in beating back the disease. Many Stage 4 people here have had dramatic success with HT. We will just have to see.
But clearly he is profoundly ill. Be aware that Taxotere is a "conventional" chemo, with many of the usual chemo side-effects. He will be profoundly weak and tired; most likely he will lose any hair that he has. He appetite may disappear.
The thing to do now for himn is to continue to be there for him, and hope that he can ride this out.
The doctors are probably not saying anything because they too need to see how well he responds to their best efforts.
max
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Look for a Medical Oncologist to follow his case
Jullo,
In your last post of Aug. 10 (under the name of jullo123), you were prepared to get a second opinion. You also informed that the radiology report ....... I have read that the cancer is in other parts of his body. I wonder if you in fact have already obtained such opinion from an oncologist out of VA affairs. Your partner needs to have a doctor he trusts. Someone that is able of looking over the cancer problem and at the same time to care on the overall health status, that can be affected by the Chemotherapy and hormonal manipulations. Drugs interact so that He needs vigilance and constant tests on lipids, heart health, liver, etc.
Unfortunately the only treatments with certain level of success for stage 4 patients are chemo, hormonal and immunotherapy. These do not provide cure but manage to control the advancement of the cancer during a long period. Surgery would only add more risks and side effects without any benefit, and Radiation may be reserved to attack spots in bone when these cause pain.
Xofigo (Alpharadin) is known to kill cancer in bone. It tackles the metastases using the path that controls osteoblast (deterioration of bone cells). It has been FDA approved to use in chemo refractory patients but it can be administered to chemo naive patients too. This is a good drug however it is reported to cause nasty side effects (needs to be checked). This drug and other newer are on trials so that you can discuss with his doctor about any opportunity of getting him involved (clinicaltrials.gov). These are safe and done free of charge. Just inquire.Look into diets and changing habits to counter the side effects of the treatment. Here are links of other stage 4 patients for your information;
https://csn.cancer.org/node/294778
https://csn.cancer.org/node/171454
https://csn.cancer.org/node/282496
Best wishes and luck in his journey,
VGama
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Thank you for responding . ItOld Salt said:Very aggressive, unfortunately
Sorry about the diagnosis. Clearly your partner needs very aggressive treatment. The combination of hormone therapy and chemo (six rounds of taxotere) seems appropriate for starters. This will be tough on both of you, but there are various 'tricks' to make the chemo more tolerable. I hope the medical staff has given you help in that respect.
Hopefully the PSA will drop as a result of the treatment. Let's wait for that to happen before considering further approaches to control the cancer.
We, as laypeople, and with only a limited amount of medical information, can't really give a prognosis. As mentioned, let's see if the PSA does drop to very low.
In the meantime, please educate yourself and don't fail to ask further questions.
PS: The diagnosis/staging (T1c, N0, M0) makes no sense considering the metastases. For an explanation, here's a link:
www.cancer.net/cancer-types/prostate-cancer/stages-and-grades
Thank you for responding . It's good to hear that
this is the standard protocol used. I couldn't figure out
the staging either. Maybe it was taken before the bone
scan was done. He seems to be managing the chemo
relatively well although there has been just two treatments.
What seemed to really knock him for a loop was the immune
booster shot . The pain through his pelvis and thighs was hard on him.
The nurse told us afterwords it's because it's forcing the marrow to grow
so as to increase white blood cells ? Would have been nice to know somewhat
what to expect beforehand.
with appreciation ,
J
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Thanks Max . Hes holdingMust wait
As Old Salt noted, you will have to wait a bit to see how successful the treatments are in beating back the disease. Many Stage 4 people here have had dramatic success with HT. We will just have to see.
But clearly he is profoundly ill. Be aware that Taxotere is a "conventional" chemo, with many of the usual chemo side-effects. He will be profoundly weak and tired; most likely he will lose any hair that he has. He appetite may disappear.
The thing to do now for himn is to continue to be there for him, and hope that he can ride this out.
The doctors are probably not saying anything because they too need to see how well he responds to their best efforts.
max
Thanks Max . Hes holding somewhat on to his
hair has bought a cold cap. He is very tired and usually
is slowing down by 2 or 3 . He did go golfing last week!
0 -
I will wait to hear from youVascodaGama said:A matter of units' equivalence
Jullo,
You seem upset for your husband's preference on his doctor's opinion but which oncologist you think to be correct in regards to the best level of Vitamin D?
The argument may be just a misunderstanding over the units in discussion. Vitamin D levels in blood is typically measured in ng/ml or nmol/L, therefore, one must tell which unit is used to avoid errors. For instance the level of 30 ng/ml equals 90 nmol/L.
In such regards, the "90" comment from the naturopath oncologist could be the "anything above 30" comment from his oncologist, if the former is using 90 nmol/L against the latter 30 ng/ml.In any case, I agree with you that your husband should be careful with vitamin D levels in the blood because both therapies (chemo and hormonal) will deteriorate his bone health, already affected by the presence of cancer. Old fellas in particular (I am 67 yo too) are at risk for lack of vitD as the skin (under the sun) do not produce the stuff as much as at young age. Of course he can try getting the vitamin D through diets and particular foods or via supplements. I read before that one pill of 1000 IU (25 mcg) per day increases vitamin D blood levels of 10 ng/ml, after 2 to 3 months of daily intake.
However, vitamin D is not the only requirement your partner will need to feel improvements. I recommend him to have a DEXA scan to check the bone health. He may need to add to the treatment a sort of bisphosphanates to correct bone loss. Typical in stage 4 PCa patients are the drugs; Prolia (denosumab) or Zometa (zoledronic acid). Please research about this matter in the net for details and discuss with the oncologist. Here are reading materials;
https://www.nice.org.uk/guidance/ta265?unlid=7373847220162924913
Both of you are stressed with the situation so that you need to work together listen to both opinions fairly. In the end, PCa becomes an illness of the couple.
Best wishes for improvements,
VG
I will wait to hear from you . Thank U.
0 -
??VascodaGama said:A matter of units' equivalence
Jullo,
You seem upset for your husband's preference on his doctor's opinion but which oncologist you think to be correct in regards to the best level of Vitamin D?
The argument may be just a misunderstanding over the units in discussion. Vitamin D levels in blood is typically measured in ng/ml or nmol/L, therefore, one must tell which unit is used to avoid errors. For instance the level of 30 ng/ml equals 90 nmol/L.
In such regards, the "90" comment from the naturopath oncologist could be the "anything above 30" comment from his oncologist, if the former is using 90 nmol/L against the latter 30 ng/ml.In any case, I agree with you that your husband should be careful with vitamin D levels in the blood because both therapies (chemo and hormonal) will deteriorate his bone health, already affected by the presence of cancer. Old fellas in particular (I am 67 yo too) are at risk for lack of vitD as the skin (under the sun) do not produce the stuff as much as at young age. Of course he can try getting the vitamin D through diets and particular foods or via supplements. I read before that one pill of 1000 IU (25 mcg) per day increases vitamin D blood levels of 10 ng/ml, after 2 to 3 months of daily intake.
However, vitamin D is not the only requirement your partner will need to feel improvements. I recommend him to have a DEXA scan to check the bone health. He may need to add to the treatment a sort of bisphosphanates to correct bone loss. Typical in stage 4 PCa patients are the drugs; Prolia (denosumab) or Zometa (zoledronic acid). Please research about this matter in the net for details and discuss with the oncologist. Here are reading materials;
https://www.nice.org.uk/guidance/ta265?unlid=7373847220162924913
Both of you are stressed with the situation so that you need to work together listen to both opinions fairly. In the end, PCa becomes an illness of the couple.
Best wishes for improvements,
VG
Why does this keep happening ? It aint right. Your posts have always been the most informative and helpful written here. I am not encountering this nonesense.
You have never written a word here, ever, that any sane or reasonable person could take any offense at.
max
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Chemojullo234 said:Thanks Max . Hes holding
Thanks Max . Hes holding somewhat on to his
hair has bought a cold cap. He is very tired and usually
is slowing down by 2 or 3 . He did go golfing last week!
Chemo tends to be "cumulative" in the weakness it causes, but I hope not for him.
Taxotere is a popular drug against metastatic PCa, breast cancer, and a few others.
For informatinal purposes, I will tell you that chemo (any form of chemo) is NOT curative of PCa. It will beat the disease back. What chance he has for cure is Radiation, although with widespread bone involvment, that ship has possibly sailed. But between chemo and HT, he may live many good years, once the disease is beaten back . I pray so.
http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx
.
0 -
The thought of the chemo asChemo
Chemo tends to be "cumulative" in the weakness it causes, but I hope not for him.
Taxotere is a popular drug against metastatic PCa, breast cancer, and a few others.
For informatinal purposes, I will tell you that chemo (any form of chemo) is NOT curative of PCa. It will beat the disease back. What chance he has for cure is Radiation, although with widespread bone involvment, that ship has possibly sailed. But between chemo and HT, he may live many good years, once the disease is beaten back . I pray so.
http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx
.
The thought of the chemo as being cumalative
is depressing. I think i had read that , he has been such an active
man and full of so much zest for life I hate to see this
suck the life force out of him . I had wanted him to follow the regimen
of a naturopath oncologist who offered a supplement and diet regime. I have known two
other people who have down chemo and supplements with great success
He chose not to go this route as the dr frowned upon it. It is not my decisi to
make . I felt like I had to let go of trying to give info as it just seems to cause him
stress ....
thanks for writing it means a lot to have people who are informed and care .
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Yes that is me . I keepVascodaGama said:Look for a Medical Oncologist to follow his case
Jullo,
In your last post of Aug. 10 (under the name of jullo123), you were prepared to get a second opinion. You also informed that the radiology report ....... I have read that the cancer is in other parts of his body. I wonder if you in fact have already obtained such opinion from an oncologist out of VA affairs. Your partner needs to have a doctor he trusts. Someone that is able of looking over the cancer problem and at the same time to care on the overall health status, that can be affected by the Chemotherapy and hormonal manipulations. Drugs interact so that He needs vigilance and constant tests on lipids, heart health, liver, etc.
Unfortunately the only treatments with certain level of success for stage 4 patients are chemo, hormonal and immunotherapy. These do not provide cure but manage to control the advancement of the cancer during a long period. Surgery would only add more risks and side effects without any benefit, and Radiation may be reserved to attack spots in bone when these cause pain.
Xofigo (Alpharadin) is known to kill cancer in bone. It tackles the metastases using the path that controls osteoblast (deterioration of bone cells). It has been FDA approved to use in chemo refractory patients but it can be administered to chemo naive patients too. This is a good drug however it is reported to cause nasty side effects (needs to be checked). This drug and other newer are on trials so that you can discuss with his doctor about any opportunity of getting him involved (clinicaltrials.gov). These are safe and done free of charge. Just inquire.Look into diets and changing habits to counter the side effects of the treatment. Here are links of other stage 4 patients for your information;
https://csn.cancer.org/node/294778
https://csn.cancer.org/node/171454
https://csn.cancer.org/node/282496
Best wishes and luck in his journey,
VGama
Yes that is me . I keep messing up my password .
Surprising to me that you have taken the time to make the connection .
much appreciated ! We got him out of the VA system , he now sees
a medical oncologist. He likes him but I find him to be abrupt and he poo poos
supplements . For example I have read that Vit D is very important to be above 30.
the naturopath oncologist said it should be 90 to 100 the dr just said that anything above
30 was just fine . This time last year I kept asking him to have his vit d level checked
out. It was under 30 last year ... He prefers to go with what the dr says and Im not well enough informed
to really know the right approach.
The info about radiation is what I was wondering about . No one has mentioned radiation .
i personally can't imagine more side effects but a part of me knows this is only the beginning .
i will look at the sites you sent me . Thank you for your input and your time .
0 -
Why would some ones input be??
Why does this keep happening ? It aint right. Your posts have always been the most informative and helpful written here. I am not encountering this nonesense.
You have never written a word here, ever, that any sane or reasonable person could take any offense at.
max
Why would some ones input be under review ?
0 -
Hi guys,VascodaGama said:A matter of units' equivalence
Jullo,
You seem upset for your husband's preference on his doctor's opinion but which oncologist you think to be correct in regards to the best level of Vitamin D?
The argument may be just a misunderstanding over the units in discussion. Vitamin D levels in blood is typically measured in ng/ml or nmol/L, therefore, one must tell which unit is used to avoid errors. For instance the level of 30 ng/ml equals 90 nmol/L.
In such regards, the "90" comment from the naturopath oncologist could be the "anything above 30" comment from his oncologist, if the former is using 90 nmol/L against the latter 30 ng/ml.In any case, I agree with you that your husband should be careful with vitamin D levels in the blood because both therapies (chemo and hormonal) will deteriorate his bone health, already affected by the presence of cancer. Old fellas in particular (I am 67 yo too) are at risk for lack of vitD as the skin (under the sun) do not produce the stuff as much as at young age. Of course he can try getting the vitamin D through diets and particular foods or via supplements. I read before that one pill of 1000 IU (25 mcg) per day increases vitamin D blood levels of 10 ng/ml, after 2 to 3 months of daily intake.
However, vitamin D is not the only requirement your partner will need to feel improvements. I recommend him to have a DEXA scan to check the bone health. He may need to add to the treatment a sort of bisphosphanates to correct bone loss. Typical in stage 4 PCa patients are the drugs; Prolia (denosumab) or Zometa (zoledronic acid). Please research about this matter in the net for details and discuss with the oncologist. Here are reading materials;
https://www.nice.org.uk/guidance/ta265?unlid=7373847220162924913
Both of you are stressed with the situation so that you need to work together listen to both opinions fairly. In the end, PCa becomes an illness of the couple.
Best wishes for improvements,
VG
Hi guys,
Vasco himself is never flagged or under review. The upgrades we put in on the site have tougher spam guidelines and some posts automatically get pulled for review by us prior to posting. From what we have seen, especially long posts or ones with multiple links tend to flag the system to pull the posts. We are working on a fix for this, but until that point, please know that no one member is being targeted.
I apologize for the inconveninece.
Simone
CSN Support Team
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.CSN_Simone said:Hi guys,
Hi guys,
Vasco himself is never flagged or under review. The upgrades we put in on the site have tougher spam guidelines and some posts automatically get pulled for review by us prior to posting. From what we have seen, especially long posts or ones with multiple links tend to flag the system to pull the posts. We are working on a fix for this, but until that point, please know that no one member is being targeted.
I apologize for the inconveninece.
Simone
CSN Support Team
Thanks for doing your job, and keeping the forums going. We understand.
0 -
for SIMONE
Simone,
Please note that I appreciate very much your efforts to keep this forum running, and I am sorry if we use you to transmit our feelings to CSN administrators. In the end, the system glitch may be an error of the IT engineer, but I wonder why CSN decided to incorporate such feature of censorship in the discussion boards. Spam is a matter in the mailing facility.
In fact it was the freedom provided by the forum to members to exchange opinions, recommendations and experiences (at will) that attracted me to subscribe to CSN, becoming a member and a lay advocate of prostate cancer affairs. Sometimes I spend hours of investigation just to provide a fair answer/comment to a member inquiry. I find that those links, internet site addresses and list of reading materials are important tools to all of us. Eliminating or restricting such a possibility in the discussions would be a tremendous lost of this forum.
Censorship or restraints in the information we exchange here is a very negative principle. I think that the system was fine before by allowing members to flag posts judged to be malicious, linked to commercials or due to improper behaviour of the writer, etc, alarming the administrator for his review and shred of the post at his will. This feature has worked nicely since 2010.
Regarding the sotware glitch, it may help to inform the IT engineer that the "Emotions" feature of the forum seems to be suspended. These emotions were incorporated in the posts as links from a separate site which address is none existent anymore. Instead of the emotion we now see the internet error.
Other comments regarding the software I have gathered from members are the missing "spell-check dictionary" in the writing pad of the site, and the search feature of individual posts by each member in the "my CSN space".Sincerely,
VGama
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Directjullo234 said:Yes that is me . I keep
Yes that is me . I keep messing up my password .
Surprising to me that you have taken the time to make the connection .
much appreciated ! We got him out of the VA system , he now sees
a medical oncologist. He likes him but I find him to be abrupt and he poo poos
supplements . For example I have read that Vit D is very important to be above 30.
the naturopath oncologist said it should be 90 to 100 the dr just said that anything above
30 was just fine . This time last year I kept asking him to have his vit d level checked
out. It was under 30 last year ... He prefers to go with what the dr says and Im not well enough informed
to really know the right approach.
The info about radiation is what I was wondering about . No one has mentioned radiation .
i personally can't imagine more side effects but a part of me knows this is only the beginning .
i will look at the sites you sent me . Thank you for your input and your time .
I will be somewhat blunt, Jullo, for the sake of honesty and in the hope that he gets better:
"Naturopathic medicine", at leat in the realm of fighting cancer, is another way of saying "flake" medicine, or "dream" medicine. It may sound good in theory, and the desire to be "natural," but cancer cells are not "natural," and when a person is Stage 4, nothing in their immune system is going to turn back the disease. This is very close to universally accepted here, and IS universally accepted among doctors.
Good nutrition and healtful activities are always good for the body, and to be encouraged. But they are not curative of cancer.
While he might or might not already be terminal (that is yet to be determined), abandoning medically approved treatments for someting else will only shorten his time, not lengthen it.
Although many chemos are 'cumulative', in that they worsen side-effects during the course of use, so too do those side-effects fade away after use is ended, in most cases. Hair returns, appetite will come back (if his health otherwise allows it, and so forth). Rarely, a side-effect will be lifelong: I have permanent neuropathy (numb hands adn feet, from nerve damage), for instance. But I'd rather have that numbness that what I would have if I'd never used the drugs, which would be death.
max
0 -
I think getting him out ofjullo234 said:Yes that is me . I keep
Yes that is me . I keep messing up my password .
Surprising to me that you have taken the time to make the connection .
much appreciated ! We got him out of the VA system , he now sees
a medical oncologist. He likes him but I find him to be abrupt and he poo poos
supplements . For example I have read that Vit D is very important to be above 30.
the naturopath oncologist said it should be 90 to 100 the dr just said that anything above
30 was just fine . This time last year I kept asking him to have his vit d level checked
out. It was under 30 last year ... He prefers to go with what the dr says and Im not well enough informed
to really know the right approach.
The info about radiation is what I was wondering about . No one has mentioned radiation .
i personally can't imagine more side effects but a part of me knows this is only the beginning .
i will look at the sites you sent me . Thank you for your input and your time .
I think getting him out of the VA system was a very good move. I've heard many horror stories from VA patients. This is anecdotal, but my father had a knee replacement done at a VA hospital at age 73. He began suffering from hypoxia after the surgery, so they put him on oxygen. His oxygen levels were fine while on supplemental oxygen, but they were not able to stabilize it without it.They sent him home two days later anyway, WITHOUT OXYGEN. He had a heart attack and died eight hours after being released from the VA hospital. Based on my mother's description of his behavior that evening, it was pretty clear that the hypoxia had returned. The autopsy did not find any apparent cause for the heart attack.
Admittedly, he contributed heavily to his own death by being a lifelong cigarette smoker, and he had had a first heart attack 17 years earlier, but they should have known better than to release him without oxygen. My mother ultimately received a settlement from them.
I have seen a couple of horror stories at the YANA website (yananow.org) as well. I am a veteran but will never go to a VA hospital for any kind of treatment.
0 -
A matter of units' equivalence
Jullo,
You seem upset for your husband's preference on his doctor's opinion but which oncologist you think to be correct in regards to the best level of Vitamin D?
The argument may be just a misunderstanding over the units in discussion. Vitamin D levels in blood is typically measured in ng/ml or nmol/L, therefore, one must tell which unit is used to avoid errors. For instance the level of 30 ng/ml equals 90 nmol/L.
In such regards, the "90" comment from the naturopath oncologist could be the "anything above 30" comment from his oncologist, if the former is using 90 nmol/L against the latter 30 ng/ml.In any case, I agree with you that your husband should be careful with vitamin D levels in the blood because both therapies (chemo and hormonal) will deteriorate his bone health, already affected by the presence of cancer. Old fellas in particular (I am 67 yo too) are at risk for lack of vitD as the skin (under the sun) do not produce the stuff as much as at young age. Of course he can try getting the vitamin D through diets and particular foods or via supplements. I read before that one pill of 1000 IU (25 mcg) per day increases vitamin D blood levels of 10 ng/ml, after 2 to 3 months of daily intake.
However, vitamin D is not the only requirement your partner will need to feel improvements. I recommend him to have a DEXA scan to check the bone health. He may need to add to the treatment a sort of bisphosphanates to correct bone loss. Typical in stage 4 PCa patients are the drugs; Prolia (denosumab) or Zometa (zoledronic acid). Please research about this matter in the net for details and discuss with the oncologist. Here are reading materials;
https://www.nice.org.uk/guidance/ta265?unlid=7373847220162924913
Both of you are stressed with the situation so that you need to work together listen to both opinions fairly. In the end, PCa becomes an illness of the couple.
Best wishes for improvements,
VG
0 -
I'm sorry to hear about yourmikedayton62 said:I think getting him out of
I think getting him out of the VA system was a very good move. I've heard many horror stories from VA patients. This is anecdotal, but my father had a knee replacement done at a VA hospital at age 73. He began suffering from hypoxia after the surgery, so they put him on oxygen. His oxygen levels were fine while on supplemental oxygen, but they were not able to stabilize it without it.They sent him home two days later anyway, WITHOUT OXYGEN. He had a heart attack and died eight hours after being released from the VA hospital. Based on my mother's description of his behavior that evening, it was pretty clear that the hypoxia had returned. The autopsy did not find any apparent cause for the heart attack.
Admittedly, he contributed heavily to his own death by being a lifelong cigarette smoker, and he had had a first heart attack 17 years earlier, but they should have known better than to release him without oxygen. My mother ultimately received a settlement from them.
I have seen a couple of horror stories at the YANA website (yananow.org) as well. I am a veteran but will never go to a VA hospital for any kind of treatment.
I'm sorry to hear about your dad !
In my partners situation the Doctor who saw the PSA was over 15 said,
" do you really want me to stick my big hand up
your ---" . Instead of doing a standard DRE that is what he said .( crass but true ).
He basically told him not to worry about it that a lot of PSA s were high in men
that led to unecessary surgeries . Finally more than 6
months later he did a biopsy which showed almost all cores
positive for cancer .
So I lost faith in the VA some time ago ..
0
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