wife- looking for support and information
Hello everyone. Been looking through everyones posts. What an amazing resource this is! My husband (54 YO) was just confirmed through biopsy he has high grade adenocarcinoma of the prostate - Gleason score is 8. He had a MRI prior to the bx which showed the presence of abnormal tissue. PSA was only 4 when his PCP told us it was a little high. He is currently under the care of a urologist. We have a recheck on 12/7 to discuss next steps. I was looking over the MRI again and noticed that the radiologist noted a place on his R hip that was "indeterminate"....Rec to have a PET scan to rule out mets.(I reached out again to his doc and it is scheduled for 12/8) Note, his urologist didn't mention this at all. I have been doing all the double checking, research, legwork on getting things scheduled. I have since scheduled with a urologic oncologist at Duke University who has extensive experience with the radical nerve sparing prostatectomy procedure...Just curious if alot of you have had similar experiences? I am not a doctor by any means but am a fierce advocate for my husbands care and health. Anyone out there with a similar diagnosis/score, etc? Any advice? Anything else I should be doing? Thank you!😞
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Also- Has anyone else had prostate cancer and been treated at Duke? We are going to a particular Doc who has extensive expertise, but just want to make the right decision.
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Good for you to be studying the complex issues related to the optimal care for your husband with Gleason 8 cancer.
I was especially happy to read that you both will have a discussion with an urologic oncologist at a well-known medical center. Don't limit your discussion to surgical removal of the prostate. There are other options! Specifically radiation therapies.
With respect to surgery; there is a 'newer' technique that is called Retzius-sparing prostatectomy. The Duke specialist who you will be meeting should be able to give you more info.
You can also ask whether a PSMA directed scan is appropriate at this time. It is the most sensitive scan to detect metastases.
I do hope that the spot discovered on his hip will turn out to be non-cancerous.
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Wow- Yes, this helps ALOT.. It's been overwhelming to say the least. Thank you so much for your input- I will ask regarding both of these things! God bless!🙏❤️
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Hi,
Sounds like you are working through the process. A PSMA PET scan should help pinpoint any cancer outside of his Prostate. A bone scan would also be a good diagnostic tool. Gleason score of eight(4+4 or 3+5,5+3) is on the aggressive side, 5+3 would be the worse, 4+4 would be slightly better? The first # is the most number of cells observed in his biopsy. Once you determine if his cancer is totally within the Prostate or not you can decide on which treatment options to follow. If he has suspicious areas outside of his Prostate some form of radiation therapy might be a better choice. If his cancer is totally within his Prostate then surgery could work. Get the best team of doctors and facilities to get the best results and make sure you also consult with an Oncologist to get both sides of the story. The treatment protocols you choose are up to you and your husband based on your doctor’s input. I had robotic surgery in 2014 and have no regrets. I have included a link to get you some basic info on treatment types, good luck.
Dave 3+4
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Thank you Clevelandguy-
His Gleason is a 4+4(8)....His current urologist has not been forthcoming with ANY info. (Not exaggerating)- Everything I have found out, I have found from research on my own. He didn't explain what the "Gleason score" means, I knew what it was as I was already researching the min he got diagnosed. So, when I saw the pathology reports it all made sense. I went through both the MRI and Path report and looked up everything I didn't understand- Thank God for Google! His Doc only said that he has a high-grade cancer and we need to talk about options (over voicemail) Which is why we have pending appt at Duke..... He has a PET scan now scheduled for first week of Jan and I'm going to ensure its the PSMA PET scan. I REALLY appreciate the feedback I have gotten from my question. It's navigating some murky waters. Arming ourselves with information and prayer, I know we will find our way through this! 😌
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Hey teammiller425...I began my journey over 15 year ago at 53 years old with this beast...Good news, you have figured out the best foot forward is with a University teaching hospital, not your local urologist. I also have had high grade prostate cancer and have had surgery, radiation twice, Lupron twice (6 and 5 month periods), surgery to repair radiation damage and just finished another body scan looking for the beast (didn’t find anything yet but PSA on the rise again)…Long story short, I have lived life every day for 15 years…I’ve been blessed to do things I thought I would never do, career change, major move, etc….Enjoy the ride
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Thank you so much bdhilton- That is so encouraging. It's so humbling that you all are using your own journeys to help others - I really appreciate the feedback and any info that's been provided!!! God is still good even in this!
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Sorry- Just wondering....What was your Gleason score from your histopath when you had your biopsy? And what was your PSA when you were prompted to investigate further?
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Good morning! I just confirmed that the scan my husband is scheduled for is a PSMA PET!!!! Thanks for the heads up on that. 😊
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All anyone can do is share their personal journey....Diet has been important for me. I've been blessed with good health throughout my journey. I would recommend moving towards a Mediterranean Diet and lots of exercise. Yes, lots of care options and if I were doing this today, I'd be considering a flavor of radiation for a first line of defense BUT, you medical team at Duke will serve you well...good luck!
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My clinical Grading was Gleason 4+3=7, TB2, palpable nodule on right base/mid…
I am mistaken, my post-surgery pathology report in summary is: Gleason 3+4=7, TB3, negative margins, right Seminal Vesicles was invaded :-(, lymph nodes were all clear…
Dr. Catalona said if it was his pathology report he would get salvage radiation 90-120 (this would have been May-June 2010) days out from surgery because of the Seminal Vesicles was invaded as well ( I did not receive salvage radiation until 2005=-5 1/2 years later)
There were no cancer cells in my nerves or blood veins within my prostate with the Perineural Invasion?
My medical team was baffled, as I had no PSA for about 2 years. I was a vegan for 6 years…I incorporated meat back into my diet. I would not recommend being a vegan, lol….Mediterranean Diet, exercise and force a smile on your face!
Remember, it is what it is, but it will become, what you make of it-All my best
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Thank you so so so much for your reply and for sharing your journey- It helps more than you know! I'm showing my husband these posts and I think it's helping both of us not feel so alone in this ❤️
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Thanks so much for the encouragement and advice. I really take all of this to heart 💕
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I agree with Clevelandguy, find the best facility and doctor. From my current experience you want a medical team to be with you for this journey. My biopsy by my urologist was Gleason 7 (4+3) which was the worse in 2 of 4 cores. Went to MD Anderson for a second opinion. They rescored the biopsy as Gleason 8, and ordered both a bone Scan and PET scan. You can meet with both a surgeon and radiologist during the same visit. I elected surgery which took place yesterday. Was discharged today and so far feeling "ok". Like otters, if there is reoccurrence, I still have radiation as plan b.
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Hi again everyone. So, I'm looking for some wisdom. We went to Duke on 12/21 and met with a wonderful doctor there. We are currently scheduled for prostatectomy on 2/21. However, we are still struggling a bit.
I had my urologist in the city we live order a PSMA pet scan due to an indeterminate spot on my husbands R hip (per MRI) Radiologist recommended Pet scan. My insurance turned it down and deemed it as not medically necessary- I appealed it as did the local urologist- Still denied!!!! According to the surgeon at Duke- he said that if we did the PSMA pet and it showed metastasis, we could no longer elect prostatectomy. That the recommendations for PC outside the margins is radiation and HDT- So, it was either get another opinion from the rad onc or, do surgery with him - I understand all of this as my research has led me to these same answers....BUT seriously? So frustrating. In short, we go ahead and remove the prostate- Assume everything is fine unless the PSA continues to rise....then, we do radiation and hormone therapy. Why does this seem so messed up? Why as the patient are our hands tied? Insurance won't cover a costly but necessary scan (cash out of pocket if we just did it ourselves is $8k) Nope- Can't afford that. So, we go through the surgery and all the side effects of that, only to sit back and wait to see if there truly was something on his hip that turns out to be prostate cancer? Then do more therapy?
We have also been researching other options and were led to City of Hope Hospital in Georgia- Would love to know if anyone out there has had experience with them? Thoughts? We are considering having a 3rd opinion before committing to the surgery...
Sorry for the rant- Just frustrated. Any feedback is appreciated. 😔
Also, he is 54 years old, Gleason 8 (4+4)- according to MRI no extraprostatic extension. "(Index lesion (lesion #1 - 0.54 mL - PI-RADS 4) within the left peripheral zone. This lesion has the appearance of a
high-grade malignancy. The lesion has 12 mm capsular abutment, with no evidence of extraprostatic extension.)"
"Few small enhancing right femoral head lesions are indeterminate.- Consider: PSMA PET/CT exam" From MRI report....
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Hello I’m just playing devils advocate not taking sides. You want surgery to remove prostate but also wish to know if hip spot is cancerous. I’m no doctor but I believe most likely if it is prostate cancer it most likely would have showed up in pelvis area first. My suspicion would be that it’s not cancerous or is another form of cancer therefore no PSMA scan since it is specific to the prostate type of cancer. I suppose they have to draw the line somewhere and with no disrespect they can’t just Willy nilly do PSMA scans for all cases. Maybe the fact you have elected surgery already affected their reasoning I dunno. However, again I’m no doctor but if you did have a PSMA scan and the hip was positive I think your doctor is correct legally that initial surgery would be out of the question only because that is the protocol of the medical gurus. I do understand the frustrations but once you decide on a therapy then other things have to fall under a category and protocol to move forward regardless of what the doctor thinks. Remember, unfortunately the insurance and drug companies are mostly in charge. It’s great you choose to support your husband this way obviously you care for him dearly but some things we just can’t change. Keep up the fight tho we are with you.
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"... ...our hands tied"
Hi, Miller
From the information you share above, I wonder if surgery (RP) is the main option to treat your husband’s case. The Duke doctor’s opinion may be a better choice even without the PSMA PET confirmation of the spot identified by the radiologist.
The risk for extraprostatic extensions in Gleason rate 4 cases are high which by itself creates the doubt in choosing surgery alone. There will be always the thought that salvage radiation will be needed in the future. In fact some doctors suggest a combination treatment of RP + RT from the start.
Both, the PSA and the MRI report draw a nasty “picture” of the case. High Gleason rates and sums typically produce low levels of PSA, and the MRI findings on the “12 mm capsular abutment” of the lesion leads to think in possible existing spread.
Of course, you can choose radiation therapy (RT) as the prime treatment that would care for the gland, it’s surrounding areas and the spot on the R hip.
I would like to know what lead your husband in getting a biopsy. Can you paste here the pathologist report on the biopsy findings.
Well, you have all the rights to be frustrated with the insurance negation. They may listen better to your appeals if the request comes from famous hospitals or institutions. You can still try after consulting the City of Hope Hospital.
I have no insurance so I depend on the “wishes” of the doctors assisting me at the National Healthcare NHS. They like to attend patients that are “educated” on the PCa illness but they do not like to be contested on their decisions. We have to use diplomacy when we want them to accept our wishes. It has been like that along my history.
I recommend you to get second opinions before deciding on the treatment. The status of your husband’s PCa case will not alter in three, four months, and the way to treat wouldn’t be different or have worse outcomes if you postpone it to that timing.
Best wishes and luck in your journey.
VGama
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Thank you so much for your candid reply- It's been so helpful to have a feeling of support in this group <3
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This uploaded kinda weird- But hopefully can make it out for the most part-
Thanks so very much for your open and honest feedback- This forum has been a huge blessing. I am trying to be as supportive as I can in empowering my husband to make the choice HE WANTS to make- He is still working full time and I work from home so I have the time to research and dig into some of the info out there- So, I share with him what I hear on this forum as well as other information I dig up through research- Again- Thanks for your time and your words.
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