Please, I could use some pixies - UPDATED 9/5 in post #36 - Page 3 - PassPorter - A Community of Walt Disney World, Disneyland, Disney Cruise Line, and General Travel Forums
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Old 09-04-2018, 10:13 PM   #31
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Old 09-04-2018, 10:32 PM   #32
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Old 09-04-2018, 11:10 PM   #33
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Sorry you and your DH are dealing with this. I can say I have been there. My DH had a prostate biopsy in 2015 and out of the 12 biopsied, one core came back positive for cancer. The doctor recommended a MRI. After the MRI my husband was placed under the Active Surveillance protocol and continued with exams and blood work to check his PSA. About a year later they did another biopsy of 20 cores. Again only one core positive. His doctor started him on a drug called Dutasteride (generic for Avodart). This drug shrinks an enlarged prostate, and MAY lower prostate cancer risk. My husband's PSA numbers began to drop. About three months ago he had another MRI and there was no change from the previous MRI, and the area of concern actually measured just a little smaller in size. About a month ago his PSA test came back at a number almost near to what it was before his diagnosis. The doctor is recommending a MRI-guided biopsy at the end of this year as part of the Active Surveillance protocol. I know what you mean about not knowing about how much of the Active Surveillance you can deal with. I am always nervous when it is time for that blood test or biopsy. I know every patient's situation is different. Whatever you and your DH decide for his treatment plan, I send many pixies and prayers for a good outcome! (This looks like a really long response - sorry!)
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Old 09-05-2018, 12:34 PM   #34
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I’m so sorry to hear this Stephanie! Prayers and pixies for you and Dave as you try to navigate all the options!
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Old 09-05-2018, 03:57 PM   #35
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Sorry you and your DH are dealing with this. I can say I have been there. My DH had a prostate biopsy in 2015 and out of the 12 biopsied, one core came back positive for cancer. The doctor recommended a MRI. After the MRI my husband was placed under the Active Surveillance protocol and continued with exams and blood work to check his PSA. About a year later they did another biopsy of 20 cores. Again only one core positive. His doctor started him on a drug called Dutasteride (generic for Avodart). This drug shrinks an enlarged prostate, and MAY lower prostate cancer risk. My husband's PSA numbers began to drop. About three months ago he had another MRI and there was no change from the previous MRI, and the area of concern actually measured just a little smaller in size. About a month ago his PSA test came back at a number almost near to what it was before his diagnosis. The doctor is recommending a MRI-guided biopsy at the end of this year as part of the Active Surveillance protocol. I know what you mean about not knowing about how much of the Active Surveillance you can deal with. I am always nervous when it is time for that blood test or biopsy. I know every patient's situation is different. Whatever you and your DH decide for his treatment plan, I send many pixies and prayers for a good outcome! (This looks like a really long response - sorry!)
Please, don't be sorry! Your insight and experience was very helpful and reassuring to me. Thank you so much for sharing your experiences with me!
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Old 09-05-2018, 04:27 PM   #36
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Thank you everyone for your generous sharing of pixies with me. I know it helped me to know I had some place where I could talk freely.

We are back from the doctors and the news was guardedly ok. Yes, he has cancer. His Gleason score is a 6, up to five no cancer, 6 cancer. His tumor type is the most common and slow growing. The pathology is stage one. We met with two doctors one on one ( well, one on two since I was there) first up was the radiology oncologist. Right off the bat I liked this guy. Friendly, not all puffed up, but also very straight forward. He told us that he felt looking at all the information and everything, he thought Dave would do very well with the active surveillance. He explained how it works and that even if they did a poor job of surveillance, his chances of having further issues down the line were about 5%. If he went for either radiation option, it only goes down to a 3-4% and with those odd, his age, the fact he has none of the symptoms or issues of prostate trouble, the possible side effects were more trouble than the cancer. I asked him point blank..this is your father, your son...would you still feel the same and he said yes. he said it was more likely based on studies and histories, that Dave was more likely to die from something totally unrelated to his cancer, and if you biopsied every male in the cemetery they most likely had the same level of disease as he does and were never diagnosed. He answered several questions regarding the radiological option and I felt much better after talking to him.

Next up was the surgeon/urologist that did the biopsy...she's a strange duck, but she was very straight forward as well, explained the surgical option and possible issues, side effects and everything. She said that at this point, that's like a nuclear bomb to kill a single bug. again, I was feeling much better than I had been and we were pretty much sure that active surveillance was the way we were going and both doctors seem to feel it was the right path.

The two doctors would be meeting with the pathologist at 11 for the tumor board to discuss and finalize recommendations for us and for the other two gentlemen also going through this. (they put you in an exam room and the doctors rotate to see you along with a social worker...oh yes, the social worker)

The social worker left me cold. She came in and immediately started off by treating us as if we were infants, talking in that annoying sing-son voice that makes you feel like you are being pandered to as well as if she were looking down on us. She also didn't bother to do any preparation regarding Dave's diagnosis, prognosis, or probable treatment plan but went right into pain management, getting Depends now and wearing them now so it's not such a big deal after surgery, my role as caregiver ...as if he were going to be whisked right out of the room and directly into an OR for a prostatectomy. Please do not think I am dissing social workers, I'm not, but I am her. Our DDiL is a social worker. She didn't do any homework on him. This round robin is only held twice a month and today there were three patients she had to meet. Three. And she couldn't even be bothered to read his packet. She's the one that had me in tears and feeling sort of hopeless. I was crying by the time she left. Grrr.

The surgeon/urologist had told us when we were done with the social worgrrrr, (yes I meant to spell it that way) we could go to lunch or we could just go ahead and leave and she would call us later with the results of the tumor board, but since she was almost positive the pathologist was going to agree with the active surveillance, there was no need to hang around. So we didn't.

We went grocery shopping and ran a couple of errands and while we were putting the groceries away, she called and said we were a go for active surveillance, the pathologist was in complete agreement.

Whew, this was long and I thank you for reading it, but it helps to write it down and review in my head. So every six months, a blood test, every year, a biopsy, just as KathleenAnn describes. We are on our journey, but I'm very hopeful it will be uneventful.
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Old 09-05-2018, 04:47 PM   #37
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Sorry about the social worker, but glad you got a consensus and a positive prognosis from all the doctors! It sounds like you’re headed in the right direction! Continued prayers and pixies for you both!
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Old 09-05-2018, 05:57 PM   #38
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I just got home and am so happy to read this outcome for your husband and you today. Sorry the Social Worker was a little less than "social." I'm glad my rambling helped you a little! Yes, the cancer is always there on our minds, but if you have confidence in your doctors (which it sounds like you do) it is not so scary. I just pray a little harder when the blood tests/biopsies come along! Continued pixies for an uneventful journey!
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Old 09-05-2018, 06:08 PM   #39
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I just got home and am so happy to read this outcome for your husband and you today. Sorry the Social Worker was a little less than "social." I'm glad my rambling helped you a little! Yes, the cancer is always there on our minds, but if you have confidence in your doctors (which it sounds like you do) it is not so scary. I just pray a little harder when the blood tests/biopsies come along! Continued pixies for an uneventful journey!
Your ramblings really did! A lot of people were aghast we were thinking of not doing anything...you showed me this is possible and not a wild thing! Pixies and prayers for you and your DH as well!
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Old 09-05-2018, 06:37 PM   #40
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Sorry for the social worker treating you that way.

Continued for you and DH.
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Old 09-05-2018, 08:22 PM   #41
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So glad to hear the outcome of todays hospital visit. It certainly sounds like that is the right plan.
Continued for your journey!
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Old 09-05-2018, 09:18 PM   #42
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Sounds like that social worker needs a new profession! Grrrr indeed! as you two begin this active surveillance journey.
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Old 09-05-2018, 11:43 PM   #43
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Speaking to you as a former social worker (I now practice family law which is social workish law). I urge you to send an email to the social workers supervisor to let her know about your negative experience. One important part of social work is GOOD supervision and this woman sounds like she could use a good dose of it.

Perhaps she was just having a very bad day, but even when having a bad day she needs to be available to her clients in a positive way. Her supervisor should help her figure out what happened.

So glad to hear your good prognosis. So lucky that your husband had the best case scenario.
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Old 09-06-2018, 09:16 AM   #44
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Sorry for the social worker treating you that way.

Continued for you and DH.
At first I thought she had us confused with one of the other men. The two doctors were positive and supportive and she had him incontinent and suicidal!
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Old 09-06-2018, 09:18 AM   #45
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So glad to hear the outcome of todays hospital visit. It certainly sounds like that is the right plan.
Continued for your journey!
Thanks, I am too! The doctor said it was found so early because he's been getting blood tests every six months from his PCM due to his cardiac history, and the rising PSA was noticed. Since he had no symptoms, it might not have been caught with a yearly or more checkup. Never thought I would be thankful or his cardiac hx!
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