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Terrified & waiting for diagnosis for spouse. Please help.

User
Posted 27 Nov 2023 at 22:01

Let me start by apologizing for the length of this post in advance. My head is spinning, I'm finding it hard to form coherent thought. Functioning seems like an impossible task currently. I live in America, but I have found no other forum that I find as supportive, positive, or informative, so here I am.

My husband had a rise in PSA from under 1 to 5.7 within a year. He is 55 years old.  His doctor had him take a course of antibiotics and repeat the PSA in 3 weeks, which was then 5.3 with a free PSA % of 9. We were referred to a urologist who did a DRE and ordered an MRI. The urologist said his prostate was enlarged but he felt nothing else concerning during the DRE. He had the MRI with and without contrast on Saturday and the results posted to his MyChart on Sunday. The results have not been viewed by his doctor as of yet but looking at them I can see he almost certainly has prostate cancer.  The report states the following:

A 1.1 cm PI-RADS 4 lesion in the apex left peripheral zone. Lesion 1 does not abut the prostatic capsule.

A 1.2 cm PI_RADS 4 lesion in the midgland to base left peripheral zone. Lesion 2 abuts the prostatic capsule.

No frank extracapsular extension or invasion of the seminal vesicles.

No invasion of the adjacent structures. No suspicious pelvic adenopathy.

An indeterminate 1.3 cm lesion in the left femoral neck. Consider follow up bone scan or PyL PET.

Additional findings: There is benign prostatic hyperplasia.

Lymph nodes: No suspicious pelvic adenopathy.

I understand the general idea is to wait to talk to the doctor, wait for the biopsy, wait for a definite diagnosis but I am finding that nearly impossible. 

Besides the obvious concern of prostate cancer, isn't the jump of over 5 in a year a huge jump? Is such a big jump indicative of an aggressive cancer? Additionally, my husband is black and from what I have read, he is more likely to have a more aggressive cancer. Does the fact that one of the lesions abuts the prostatic capsule mean the cancer has already travelled outside of the prostate? The indeterminate lesion on the femoral neck has me freaking the F out. 

I am looking for any information that will help me feel like we can get through this and he will be ok. I know that nobody can say with any certainty how this will go but I'm so scared, lost and I feel alone. I do not want to burden him with my fears when he is dealing with this. I am really trying to be a glass half full kind of girl around him when in every other situation I lean toward the pessimistic side. 

Thank you for taking the time to read this.

User
Posted 28 Nov 2023 at 00:23

Sorry you’re going through this, if it helps, my husbands PSA was 20.15 from 3 in a year. His was Pirads5.
 He does have cancer, but low grade Gleason 6. His PSA has dropped significantly , they believe the high reading was asymptomatic infection. 

it’s a horrendously worrying time, (ours not helped by not having any idea when treatment will start due to NHS delays) but you can drive yourself mad googling and worrying, so try not Google too much. 

hopefully he will not have to wait long for biopsy and bone scan and you will soon have a definite diagnosis and know either way. It is a lonely scary place to be, but there’s lots of information on this forum and personal stories that will give you hopefully the reassurance you’re looking for. Good luck. 

 

User
Posted 28 Nov 2023 at 08:25
MRI is still just a risk indicator not a diagnostic test to prove the risk he will need a biopsy.

Once the staging is confirmed by biopsy and further scan you will then know what your options are. These will range from do nothing to do everything hence there is probably nothing to be gained by worrying to much at this stage (if possible!).

Re skin colour and risk, yes black men are twice as likely to get the disease but IF he has it the options and outcomes are the same. PS there are theories about Vitamin D and PC risk, being black and living in a cold climate almost certainly means he will be vitamin D deficient, might want to get that checked.

User
Posted 28 Nov 2023 at 05:16

Originally Posted by: Online Community Member

I am looking for any information that will help me feel like we can get through this and he will be ok. I know that nobody can say with any certainty how this will go but I'm so scared, lost and I feel alone. 

Hi,

I don't feel qualified or confident enough to comment on your hubby's results. Following the MRI scan did you get a radiological cancer staging? Obviously you'll get a much clearer picture when he's seen by his doctor.

I fully understand your anguish and frustration of having to wait for consultations. The only advice me and my wife can give, is try your hardest to take one step at a time. Try to deal with the current situation and not worry too much about ifs and maybes.

The position you're in is a difficult one but we understand how you are feeling, we've felt it too. At times its hard to cope, thats why I'm posting in the early hours instead of being in the land of nod; but you will get through it and move forward.

People here will do their best to help, support, advise and guide you. They'll ensure that you do not feel alone.

Best of luck and please keep us informed.

Adrian

 

Edited by member 28 Nov 2023 at 06:09  | Reason: Typos

User
Posted 28 Nov 2023 at 09:33
I don't have access to his medical notes obviously but I can try and give you my thoughts as honestly as I can.

It is highly probable that he has prostate cancer but nothing so far indicates that it is anything less than the standard Adenocarcinoma.

The important word in the results is "abuts" which means that it touches or lies beside. It does not say penetrates. So a strong possibility that it is still contained within the gland.

Adding to this his relatively young age and rapid diagnosis and that you live stateside, you have access to some of the best cancer specialists in the world.

I would say that he is in a good place.

We lived in CA/NV/AZ for 13 years and experienced the US healthcare - yes it costs but the quality of care was exceptional.

Remember that PCa is one of the most curable/treatable of cancers.

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User
Posted 28 Nov 2023 at 00:23

Sorry you’re going through this, if it helps, my husbands PSA was 20.15 from 3 in a year. His was Pirads5.
 He does have cancer, but low grade Gleason 6. His PSA has dropped significantly , they believe the high reading was asymptomatic infection. 

it’s a horrendously worrying time, (ours not helped by not having any idea when treatment will start due to NHS delays) but you can drive yourself mad googling and worrying, so try not Google too much. 

hopefully he will not have to wait long for biopsy and bone scan and you will soon have a definite diagnosis and know either way. It is a lonely scary place to be, but there’s lots of information on this forum and personal stories that will give you hopefully the reassurance you’re looking for. Good luck. 

 

User
Posted 28 Nov 2023 at 01:12

Thank you for taking the time to read and respond to my post.  I really appreciate it and it helps more than you know.

User
Posted 28 Nov 2023 at 05:16

Originally Posted by: Online Community Member

I am looking for any information that will help me feel like we can get through this and he will be ok. I know that nobody can say with any certainty how this will go but I'm so scared, lost and I feel alone. 

Hi,

I don't feel qualified or confident enough to comment on your hubby's results. Following the MRI scan did you get a radiological cancer staging? Obviously you'll get a much clearer picture when he's seen by his doctor.

I fully understand your anguish and frustration of having to wait for consultations. The only advice me and my wife can give, is try your hardest to take one step at a time. Try to deal with the current situation and not worry too much about ifs and maybes.

The position you're in is a difficult one but we understand how you are feeling, we've felt it too. At times its hard to cope, thats why I'm posting in the early hours instead of being in the land of nod; but you will get through it and move forward.

People here will do their best to help, support, advise and guide you. They'll ensure that you do not feel alone.

Best of luck and please keep us informed.

Adrian

 

Edited by member 28 Nov 2023 at 06:09  | Reason: Typos

User
Posted 28 Nov 2023 at 08:25
MRI is still just a risk indicator not a diagnostic test to prove the risk he will need a biopsy.

Once the staging is confirmed by biopsy and further scan you will then know what your options are. These will range from do nothing to do everything hence there is probably nothing to be gained by worrying to much at this stage (if possible!).

Re skin colour and risk, yes black men are twice as likely to get the disease but IF he has it the options and outcomes are the same. PS there are theories about Vitamin D and PC risk, being black and living in a cold climate almost certainly means he will be vitamin D deficient, might want to get that checked.

User
Posted 28 Nov 2023 at 09:33
I don't have access to his medical notes obviously but I can try and give you my thoughts as honestly as I can.

It is highly probable that he has prostate cancer but nothing so far indicates that it is anything less than the standard Adenocarcinoma.

The important word in the results is "abuts" which means that it touches or lies beside. It does not say penetrates. So a strong possibility that it is still contained within the gland.

Adding to this his relatively young age and rapid diagnosis and that you live stateside, you have access to some of the best cancer specialists in the world.

I would say that he is in a good place.

We lived in CA/NV/AZ for 13 years and experienced the US healthcare - yes it costs but the quality of care was exceptional.

Remember that PCa is one of the most curable/treatable of cancers.

User
Posted 28 Nov 2023 at 12:12

 @ francij1 We live in Wisconsin so Vitamin D deficiency is an absolute.  His dr checks levels with every annual physical and harps him to take it. Same with me. Even with supplementing we are still deficient. Thank you for taking the time to reply.

 

User
Posted 28 Nov 2023 at 12:14

@Steve86

I appreciate you taking the time to go over what you could regarding the information in my original post. It does offer some reassurance. Thank you so much. 

User
Posted 28 Nov 2023 at 12:18

@Adrian

I'm not sure if it includes radiological staging honestly, so much of the report looks like a foreign language.

Thank you for the response, I'm trying to soak up every ounce of positivity I can. 

 
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