Newly Diagnosed: Trying to navigate and educate myself

Posted by tbyota @tbyota, Oct 1 6:57am

My husband (59) was recently diagnosed with Gleason 8 with 2 or 4 areas cant remember out of the 12 core cancerous. He initially had the MRI prior to the biopsy no concerns per his Doctor and Urologist. We are not scheduled to take a PET scan next week. I read if only in his prostate radiation or surgery is the options. However if outside prostate what are the options. Wife trying to navigate and educate myself.

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jeff Marchi | @jeffmarc | Oct 31 3:23pm

In reply to @tbyota "Im just curious. My husband has stage 3. If you have radiation but not the surgery..." + (show)

@tbyota
There werea couple of typos in the first message I wrote I have corrected it. I use voice recognition to write because I have nerve damage to my hand, And I got caught talking to somebody.

tbyota | @tbyota | Oct 31 4:02pm

In reply to @jeffmarc "@tbyota First steps would be to get a PSMA PET scan to see if there’s metastasis..." + (show)

@jeffmarc

Thank you

tbyota | @tbyota | Nov 30 3:21pm

My husband has met with the Radiation Urologist twice and with a Surgeon once. The Surgeon recommended either surgery or HIFU. This recommendation surprised me, as HIFU has not appeared in any of my research regarding treatment for his Gleason 8 localized prostate cancer.

The Surgeon mentioned that the cancer is confined to one location at the bottom of his prostate. Given the lower side effect profile, my husband is strongly considering HIFU. However, I remain concerned, as the data I have reviewed does not seem very convincing regarding recurrence rates.

I have encouraged him to consult with another Surgeon for a second opinion, we are waiting for the appointment. Does anyone have any information on HIFU?

airbag | @airbag | Dec 1 8:16pm

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rlpostrp | @rlpostrp | Dec 2 12:02pm

Your husband's urologist is flying blind with your husband in the plane without the PET scan. The PET scan will tell the urologist whether the cancer is confined/isolated to the prostate only, or if it has left the prostate and is in the lymph nodes, neighboring tissue, or God-forbid..his bones. Insist on getting a PET scan...your husband's life depends on it.

tbyota | @tbyota | Dec 2 1:22pm

In reply to @rlpostrp "Your husband's urologist is flying blind with your husband in the plane without the PET scan...." + (show)

@rlpostrp My husband has had a MRI, Biopsy and PET scan and it was found to be localized in one area.

jc76 | @jc76 | Dec 2 5:34pm

In reply to @tbyota "@rlpostrp My husband has had a MRI, Biopsy and PET scan and it was found to..." + (show)

@tbyota
It sounds like getting good medical treatment with the test done.

Was the Decipher test mentioned.

I do not have personal information on HIFU. It is a type of high frequency type treatment?

Has any of your medical professionals discussed all the different types of radiation treatments and/or ADT combinations? If not asked about them. Try to get as much information you can from your medical doctors on all the pros and cons of each treatments for PC.

I did and really helped me decide.

heavyphil | @heavyphil | Dec 3 7:19am

In reply to @tbyota "My husband has met with the Radiation Urologist twice and with a Surgeon once. The Surgeon..." + (show)

@tbyota HIFU is similar to TulsaPro - another less invasive treatment which targets usually one distinct area.
It DOES work; however, a G8 on biopsy ‘can’ - and I emphasize that word - portend other areas in the gland which, though G6 now, may also morph into more aggressive cells.
You have nothing to lose by treating this single area only; however, be advised that your husband may be subjected to yearly biopsies in order to monitor the situation, depending on his PSA, which will be at 3 or 6 month intervals.
Another alternative sometimes done is SBRT (cyberknife) plus brachy boost - radioactive seeds placed in the cancerous tumor for about an hour or so to really blast the cells. This is then followed by five sessions of high dose radiation directly to the prostate.
G8 is considered aggressive and may be even more so in the presence of IDC or cribriform cells. Sometimes even radiation isn’t enough to kill these cells and you will have a recurrence.
You need to really go over your husband‘s biopsy results with an RO and see if he is really a candidate for either HIFU or radiation with a boost. Best,
Phil