Husband Newly Diagnosed
Comments
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ipcsg.org
Just checked out the speakers at ipcsg.org. . Several of these speakers present at different support groups. I heard the presentations, mainly at thr prostate forum of oronge county, which is also a "lay person" support group. The other group that I attend which is hospital sponsored, I only heard one of these speakers.
At any rate you are attending an informative group.
Best
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When Do I Start Pestering Clinic?
Hello, Everyone. Our insurance problems are resolved so I contacted Moores Cancer Center last Tuesday January 23. I sure wish that I'd known the process to become a patient there so we could have started sooner. I was advised that my husband's medical records needed to be faxed, including biopsy findings. The Urologist faxed the next day. The medical oncologist for PCa would review and the clinic would call to schedule an appointment.
My spouse has not had any scans done yet so I'm assuming that will be the first step. I am very anxious to get more information and clinical staging. What's a reasonable length of time to wait for the clinic to call? His Gleason is 10 and I'm hoping they have some prioritization of cases so he isn't at the end of the line behind guys with low of intermediate risk. Is that selfish? I know that those men are likely as worried as we are.
Based on your experiences, how assertive do we need to be? I'm from the Nice Girls School of Charm and Etiquette so I don't want to be unreasonable. However, I'll cross to the dark side of it gives my husband any advantage in this battle he's facing. I'm planning to call and ask for a time estimate for his records to be reviewed. However, in my experience, the answer is often either something like "1-3 weeks" or "We're doing the best we can." That's entirely too vague for me! My best regards to all, Mary
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Good idea for YOU to have a copy of your medical records pertaining to prostate cancer in your possession, so it is most expedient to provide to specialists, and for reference.
As far contacting Moores Cancer Center, do so tomorrow AM. Place your name on top of the pile. Call, even show up at tne facilty, and do not leave un til you get an appointment.. Do what is necesary, but get your appointment tomorrow.
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today, when you go to the facility
ask to speak to the clinical nurse specialist........this person will know what needs to happen......
At any rate go up the chain of command.
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Charmedfullmoon50 said:When Do I Start Pestering Clinic?
Hello, Everyone. Our insurance problems are resolved so I contacted Moores Cancer Center last Tuesday January 23. I sure wish that I'd known the process to become a patient there so we could have started sooner. I was advised that my husband's medical records needed to be faxed, including biopsy findings. The Urologist faxed the next day. The medical oncologist for PCa would review and the clinic would call to schedule an appointment.
My spouse has not had any scans done yet so I'm assuming that will be the first step. I am very anxious to get more information and clinical staging. What's a reasonable length of time to wait for the clinic to call? His Gleason is 10 and I'm hoping they have some prioritization of cases so he isn't at the end of the line behind guys with low of intermediate risk. Is that selfish? I know that those men are likely as worried as we are.
Based on your experiences, how assertive do we need to be? I'm from the Nice Girls School of Charm and Etiquette so I don't want to be unreasonable. However, I'll cross to the dark side of it gives my husband any advantage in this battle he's facing. I'm planning to call and ask for a time estimate for his records to be reviewed. However, in my experience, the answer is often either something like "1-3 weeks" or "We're doing the best we can." That's entirely too vague for me! My best regards to all, Mary
fullmoon,
Although your husband is not yet officially staged, with a Gleason of 10 (quite rare here), he is very likely metastatic/Stage 4.
His treatment will most likely consist mostly of HT, which is very effective today (it gets better seemingly every year now, with new drugs all the time). It is possible he will receive radiation also.
His lead doctor will have to be a medical oncologist, NOT a urologist or radiation oncologist, although he may need both of those also on his team. I like the recommendation that you show up and not leave until you have an appointment given above. The time for being Martha Stewart is over.
max
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Thankshopeful and optimistic said:today, when you go to the facility
ask to speak to the clinical nurse specialist........this person will know what needs to happen......
At any rate go up the chain of command.
Thanks for your tip! I had no car today but I’ve worked my way up via phone and am waiting a callback from the clinical nurse specialist. The first person told me the timeline is 3-5 business days for the records review. I’m plugging away at the bureaucracy-that’s my job for the day.
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In person works better.
Mary, Years ago, I was with my lady friend, who is a high level medical practictioner. We were being treated at an HMO at the time. She had a lot of pain in her jaw. We showed up and was able to see a young substitute GP doctor for the day....the doctor said that my friend had to contact the specialist office to make an appointment, they told her next week. Well my friend asked the GP doctor where the"****" specialist was located, because she was in pain, was going to his office,
At that point the doctor called the specialist, and we saw him immediately.
Mary, I hope that you get this message.
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Message Received
Thanks. I believe you’re correct. Unfortunately, I have no car until Wednesday. I did get a callback from clinical nurse specialist who said review hadn’t happened yet. She promised to expedite and give me a call tomorrow. I figure I’ll call her first thing in the morning so she doesn’t forget me.
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SUCCESS!
Hi, EveRhône! (Now that’s the strangest autocorrect everyone)
I finally was able to schedule my husband’s scans for Friday, February 16: CT scan of abdomen and bone scan. I’m still trying to learn exactly what bone scan he’ll get. I had asked the UCSD Moores clinical nurse to check that the scans scheduled at a different hospital were ok by them and she said yes. The local urologist office assistant is very sweet but seems confused by my question. That reaffirms that transferring to cancer center was a good choice.
As the scans are scheduled and the appointment with the medical oncologist is set, my husband‘s distress is amping up. It’s hard to get him to talk about his feelings but he did own up to feeling “weird.” When asked, he said it feels weird to be staring death in the face. I’ve been reading other threads here today and my heart breaks for the pain and loss so many of you are sharing. Thank you for speaking your fears and for your courage. I discovered another discussion board (Not ACS) where the first topic was someone saying goodbye to his board friends as he was going to kill himself-which he did, according to his wife. The tone of those threads was very discouraging. What I’ve found here is a community of men who are living in the solution. That’s not to discount the real fear and pain you’re living with; rather it’s giving gratitude for how you are facing PCa. Again, thank you all!
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How to Ask Scan Questions
Hi to all. Finally, after 2 months, my husband had scans done that had been ordered by the local urologist and done at a local hospetal in a new facility. Before the scans, I contacted the Moores Cancer Center medical oncologist to ask if these scans were what they needed. They declined to suggest anything different since they have yet to see my husband. (That appointment is on Monday 2/26)
He had an abdominal CT scan and a bone scan. Both the doctor and tech seemed puzzled by my question about the bone scan. I asked “What kind of bone scan is this” and was told “It’s a whole body scan.” Duh. I tried again but all I got was that they used Technetium 99. I googled it and see it’s used in nuclear medicine. Does that tell me anything more about the scan? Is it older technology or might it be used in new machines? This facility is only a couple years old so I was hoping he was getting fairly recent technology as I figured it’s not the latest and greatest like cancer centers have.
Yes, I did ask for a CD. (2 actually,which she said wasn’t usual but relented and said we could have 2) The tech suggested waiting to pick them up for 2 days as the reports would then be included. I’m wondering about the attached reports since the urologist that ordered the test has yet to call with results. I told them we absolutely must have it in hand by Monday noon since we see the Moores Cancer doctor Monday afternoon.
So my question tonight is how do I formulate questions about the scans he’s getting so that I’m understood? I’m highly verbal but couldn’t seem to make myself understood. I know there’s likely more scans to be ordered by UCSD/Moores.
As always, thank you for sharing your lives here. Mary
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Since it’s the firstfullmoon50 said:How to Ask Scan Questions
Hi to all. Finally, after 2 months, my husband had scans done that had been ordered by the local urologist and done at a local hospetal in a new facility. Before the scans, I contacted the Moores Cancer Center medical oncologist to ask if these scans were what they needed. They declined to suggest anything different since they have yet to see my husband. (That appointment is on Monday 2/26)
He had an abdominal CT scan and a bone scan. Both the doctor and tech seemed puzzled by my question about the bone scan. I asked “What kind of bone scan is this” and was told “It’s a whole body scan.” Duh. I tried again but all I got was that they used Technetium 99. I googled it and see it’s used in nuclear medicine. Does that tell me anything more about the scan? Is it older technology or might it be used in new machines? This facility is only a couple years old so I was hoping he was getting fairly recent technology as I figured it’s not the latest and greatest like cancer centers have.
Yes, I did ask for a CD. (2 actually,which she said wasn’t usual but relented and said we could have 2) The tech suggested waiting to pick them up for 2 days as the reports would then be included. I’m wondering about the attached reports since the urologist that ordered the test has yet to call with results. I told them we absolutely must have it in hand by Monday noon since we see the Moores Cancer doctor Monday afternoon.
So my question tonight is how do I formulate questions about the scans he’s getting so that I’m understood? I’m highly verbal but couldn’t seem to make myself understood. I know there’s likely more scans to be ordered by UCSD/Moores.
As always, thank you for sharing your lives here. Mary
Since it’s the first appointment and by what you have shared so far, they won’t really be able to tell you much. Honestly knowing what kind of scans doesn’t mean anything for you. UCSD will do what their protocols call for. its so easy to wind yourself up trying to take it all in.Relax as much as possible you live in a beautiful area, sunsets on the beach will heal both of your aching hearts. and let the pros worry about the details at this point, after the scans are reviewed then any additional testing completed and recommendations happens is the time for decisions and questions. hopefully they will be able to use the scans, insurance companies can get cranky about stuff like that. Having been through this with my wife and me twice now spend the time together trust me, it will help much more than pouring over the nuts and bolts of it. I would add that I didn’t know how to think about you not having a car, did that delay appointments ? If so please fix that, anything from a rental. Uber, or reach out to agencies that offer transportation for medical appointments.
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CT exam
Mary,
Whole body Bone scans use Technetium 99. The difference in the image is the machine used in the exam. Gamma machines are the typical ones but a PET machine could do the exam and probably be more specific providing better resolution. Both, Bone scans and CT exams manage to detect lesions when these are big. Small size tumours of less than 1 cm may not be detected which would mean that a negative result could be false.
In any case, you are doing well in getting the results before meeting the doctors. They surely would not request you to repeat the exam but improve the information combining the results with an added MRI (3t) to get a multi parametric exam (the best).
Here are details on CT exams from where to get ideas for your list of questions;
Best,
VG
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UPDATE: Scans and Appointment with Medical Oncologist
Hi, everyone! I picked up the scan reports last Friday. The bone scan was clear-hooray! That was unexpected based on what the urologist had told us. The abdominal CT scan was good with the exception of one questionable node.
We saw the Moores Cancer Center medical oncologist yesterday. What a gem! She was clear and organized without a smidge of arrogance. Her residency was at Harvard/Dana Farber and Fellowship at Johns Hopkins. She has somehow mastered the art of writing notes for us to take home while still looking us in the eye. There was also a scribe typing detailed visit notes that were printed and given to us with all the steps to be done next: blood tests, scans, injections, etc.
Dr. McKay agreed the scans look good. To be sure, she’s ordered a chest CT and prostate and pelvic t3 MRI. Yay! She wanted to do whole body MRI but Paul has screws in leg from a break many years ago. Their protocol disallows a whole body scan in that case.
i had a list of bullet points and questions, all of which she covered without prompting with a couple exceptions. Until the new scans, she said it’s premature for a clinical staging. While RP might be possible, she doesn’t favor that due to his comorbidities: obesity, hypertension, Tyoe 2 diabetes, and heart issues. She suggests meeting with a radiation oncologist. I asked if we might see Dr Einck as we had heard him talk at a local support group and were impressed. We left with an appointment scheduled with him on March 19th. He is doing EBRT with a brachytherapy boost for intermediate and high risk PCa. Some guys are also on ADT.
Treatment plan is to start Lupon and Casodex within 2weeks. Paul wants to process all the info a bit longer. After 60 days and with agreement of Radiation oncologist, he would start some sort of EBRT. By then the prostate will be smaller after the ADT. There is a chance that the t3 MRI might alter this plan but she doesn’t think it will.
While I was a bit disappointed he has to do androgen deprivation, her explanation made sense. We went there believing that ADT would be the sole thing available. That’s what the urologist had told us. The DRE indicated the prostate left side was hard and enlarged and may mean extrcapsular extension. However, she explained that a Stage 4 with local extension can still have curative therapy while a man with bone mets only had palliative therapy. That was happy, happy news!
All in all, a great visit. Paul was relieved to hear that radiation appointments can be scheduled for evenings so he won’t have to miss work-unless of course he’s not feeling well. He started a brand new job as a Big Cheese in a small business just 3 days before his diagnosis. (That’s our silly family term for a good management position) Did I cover everything? Mrs. Cheese will now take questions.
Live on! Mary
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PET scan
Patients with metallic implants, prostheses, pacemakers, or other devices can safely undergo a whole bodyPET scan . These devices are not a contraindication to performing the exam.
There are various PET scans available,
Probably the best is the psma 68 pet scan. There are various clinical trials. I know that UCLA has an on going one.
Here is a PET scan that is also very good, that costs about 2500 to 3000,cash pay that is in Phoenix, AZ. It's an acetate 11. Many men that I attend support groups with me go there for a PET. ( I think that dr alemeda may also do the psma68)
Anyway look into a PET scan. Speak with the medical oncologist.
......................
In your pic, I see an attractive woman in a shinny car. Tell us men more about the car. (lol)
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Car Deetshopeful and optimistic said:PET scan
Patients with metallic implants, prostheses, pacemakers, or other devices can safely undergo a whole bodyPET scan . These devices are not a contraindication to performing the exam.
There are various PET scans available,
Probably the best is the psma 68 pet scan. There are various clinical trials. I know that UCLA has an on going one.
Here is a PET scan that is also very good, that costs about 2500 to 3000,cash pay that is in Phoenix, AZ. It's an acetate 11. Many men that I attend support groups with me go there for a PET. ( I think that dr alemeda may also do the psma68)
Anyway look into a PET scan. Speak with the medical oncologist.
......................
In your pic, I see an attractive woman in a shinny car. Tell us men more about the car. (lol)
Alas, it’s my sister’s car. I was back East this past Fall for my high school reunion and she wanted me to arrive in style. My chariot is more of a vintage workhorse that gets me where I’m going-at least most of the time.
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Did I cover everything? ....
The consultation was great in all aspects. Apart from giving you more confidence on the steps taken, it provided you comprehensive instructions and a plan (not new to you cause your researches), and the trust for having a doctor you can rely on.
The t3-MRI may substitute the PET and provide a reliable exam if the cancer is localized. Together with the CT and BS and DRE will deliver a multiparametric conclusion and a satisfactory clinical stage. The upper body may be judged “clean” for the negative BS and the added CT may find nothing there too. The PET would be more specific in detecting small sized metastases in the upper body, if any. However, after the above exams, you surely can trust your decisions on a therapy.
ADT plus RT seems reasonable for a Gleason 10, PSA = 34 ng/ml and positive DRE, but I wonder if you have discussed the other health issues with the oncologist. Typically ADT starts with Casodex (antiandrogen) followed past two weeks with a Lupron shot (agonist). After two months on ADT the cells are more sensitive to absorb the radiation assuring a more efficient outcome of the treatment. After RT, ADT continues for an extra six months (some oncologists get it longer depending on the case), but you can stop it if his other health conditions so require.
In this regard I would like to recall (above post of Dec 22, 2017) the need in having a testosterone blood test done before staring ADT. DEXA scan should also make part of the investigation to check bone health. Some guys need to add a bisphosphanate to the cocktail. Please let us know about the MRI results.
Thanks for the update. It is helping many guys reading your thread. It is very informative and educational. I am very happy, happy for the happy news.
Best wishes,
VG
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Thanks!VascodaGama said:Did I cover everything? ....
The consultation was great in all aspects. Apart from giving you more confidence on the steps taken, it provided you comprehensive instructions and a plan (not new to you cause your researches), and the trust for having a doctor you can rely on.
The t3-MRI may substitute the PET and provide a reliable exam if the cancer is localized. Together with the CT and BS and DRE will deliver a multiparametric conclusion and a satisfactory clinical stage. The upper body may be judged “clean” for the negative BS and the added CT may find nothing there too. The PET would be more specific in detecting small sized metastases in the upper body, if any. However, after the above exams, you surely can trust your decisions on a therapy.
ADT plus RT seems reasonable for a Gleason 10, PSA = 34 ng/ml and positive DRE, but I wonder if you have discussed the other health issues with the oncologist. Typically ADT starts with Casodex (antiandrogen) followed past two weeks with a Lupron shot (agonist). After two months on ADT the cells are more sensitive to absorb the radiation assuring a more efficient outcome of the treatment. After RT, ADT continues for an extra six months (some oncologists get it longer depending on the case), but you can stop it if his other health conditions so require.
In this regard I would like to recall (above post of Dec 22, 2017) the need in having a testosterone blood test done before staring ADT. DEXA scan should also make part of the investigation to check bone health. Some guys need to add a bisphosphanate to the cocktail. Please let us know about the MRI results.
Thanks for the update. It is helping many guys reading your thread. It is very informative and educational. I am very happy, happy for the happy news.
Best wishes,
VG
Hi. Thanks VH and Hopeful for your notes. After plunging into PCa research and appointments with my husband, I purposely took a few days off. I tried my best to not read or think about the topic. Spouse also took a break and joined friends for a weekend out of town.
We did discuss his other medical conditions with the MO. I gave her records from the endocrinologist and she plans to be in touch with that doctor. She did say that she has concerns about the ADT often used after Lupron and Casodex. She did order testosterone blood test. Husband had a DEXA scan in the past year that indicates he has osteopenia. The only treatment thus far for that has been Vitamin D3 and weight bearing exercise (exercise hasn’t happened)
Thanks again and I’ll post updates as we receive them.
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Slight correctionfullmoon50 said:Thanks!
Hi. Thanks VH and Hopeful for your notes. After plunging into PCa research and appointments with my husband, I purposely took a few days off. I tried my best to not read or think about the topic. Spouse also took a break and joined friends for a weekend out of town.
We did discuss his other medical conditions with the MO. I gave her records from the endocrinologist and she plans to be in touch with that doctor. She did say that she has concerns about the ADT often used after Lupron and Casodex. She did order testosterone blood test. Husband had a DEXA scan in the past year that indicates he has osteopenia. The only treatment thus far for that has been Vitamin D3 and weight bearing exercise (exercise hasn’t happened)
Thanks again and I’ll post updates as we receive them.
Casodex + Lupron = ADT
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RightOld Salt said:Slight correction
Casodex + Lupron = ADT
Hi. I wasn’t clear. While the MO was ok with Lupron and Casodex as first round of ADT, she wouldn’t recommend some of the others used as they would exacerbate his hypertension, heart issues, and diabetes. The hope is that Casodex and Lupron combined with radiation will be ”curative”
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Toto, we aren’t in Kansas anymore.
Hello to All. I accompanied my husband to his t3 MRI last week because he thought the process might trigger anxiety/claustrophobia. He told them he wanted to take lorazepam or something similar and that he would bring a driver. The scheduler stressed that he must bring the prescription bottle with him and take the med in front of them. Ok, that was a little different but he complied.
We got to campus and entered a building that had the words “translational research” in its name. It was unlike other medical services buildings I’ve been in before; a soaring lobby with a tiny sign pointing towards MRI check-in. We saw no one else in the lobby or waiting room. After he was escorted to the MRI area, I thought I’d give the receptionist our insurance card and check on any co-pays. I was puzzled when the receptionist told me “The Foundation covers the cost.” She saw I was confused and asked “Your husband signed a consent, right?” As far as we know, he hasnt signed anything special.
Long story short, would translational research translate to clinical trials for cancer? We clearly weren’t in a traditional medical setting. The process and protocol for the pelvic MRI took 3 hours. My spouse is kind of oblivious to details so he had no answers for many of my questions, other than the thing that compressed his abs was uncomfortable. This post isn’t strictly curiosity on my part. We do see the MO on Thursday and the Radiation oncologist on Monday. I know a lot is churning in Paul’s head but outwardly, PCa doesn’t seem to exist in his life. I’m concerned that a proposal that he participate in a clinical trial might meet with resistance. He’s already said he may just let his original urologist treat him with ADT so that he wouldn’t be driving ”all over the county” in his already busy life. That leads me to think he still doesn’t understand what Stage 4 PCa means.
I’ve told him stories that you’ve all shared of traveling great distances to get the latest and greatest care. I don’t want him to dismiss any clinical study participation based solely on an 80 mile round trip drive. I guess I’m thinking of suggesting the possibility of a study to him just so the idea starts processing. It truly felt like we were entering new territory walking into a translational research building. Maybe my imagination running away on me? Any suggested trials based on Gleason 10, local mets (unless the MRI showed something other scans didn’t) and newly on Casodex and getting first Lupron in2 days? You can tell me I’m overthinking things-not a new thing for me. Thanks, Mary
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