What questions to ask. Any help appreciated.
My dad received a PSA result of 24 last week and the doctor felt a nodule and hardening of his prostate. He is 68 with a family history of PC. He had a biopsy done on Tuesday and now we're just waiting for the results. After doing as much research as possible, I'm trying to prepare for his biopsy to come back showing that it is cancer. Hopefully that is not the case but Im trying to be as prepared as possible. For those of you who are on this awful journey, what questions should we be asking. He has already stated he is willing to do whatever it takes to beat this. We're located in Illinois about 60 miles south of Chicago But would be willing to travel wherever needed in order to be sure he receives the best care possible. Does anyone have recommendations on a doctor who you had a good experience with? Any input would be much appreciate.
thanks in advance!
nikki
Comments
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Father
Nikki,
With the known results you have so far, it is almost a certainty that your dad does indeed have PCa. But be aware that only the biopsy can confirm this. Based upon the particulars, they will do further testing to determine whether spread is likely or possibly certain. I would ask the doctor for his Gleason Score and whether there is indication of Positive Margins.
Northwestern University Medical Center in Chicago is most likely excellent. The closest 'big name' centers to Chicago are The Cleveland Clinic in Ohio, and The Mayo Clinic in Rochester, Minn. Both are approximately 345 miles from Chicago.
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Further tests
Thank you for your response. I was planning on asking about the Gleason score but will have to educate myself on positive margins. Thank you for that. I'm reading conflicting information on the next best route To take as far as tests if the news is what we're dreading. MRI, CT, PETscan, etc. I'm so scared of the possibility that it has already spread due to his high PSA. I am looking into northwestern and Loyola right now. This is so hard. I need my dad and my little girl needs her papa. I'm grateful to everyone on here who has shared their stories. It's encouraging To read some of what everyone on here has been able to overcome.
thanks again
nikki
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Doing things coordinately and timely
Nikki,
I agree with Max comments above. In any case, try not to panic if the biopsy confirms a positive case. Prostate cancer doesn't spread overnight and gives you time to educate on the matter, do extra exames, get second opinions and finally make an appropriate decision.
The quality of life of a PCa patient will deteriorate so that one must be careful on what to choose among the options.
I also had a PSA of 24 when diagnosed with Gleason score 6. I was 50 years old at the time, back in 2000.
Typically doctors request image studies in positive cases (the best being a MRI) but this scan should be done one month later to allow healing of the prostate. The biopsy needles will leave traces of blood in the gland which can turn the image blurred. Better to wait.
Here is a link to help you in preparing a list of questions;
https://www.cancer.org/cancer/prostate-cancer/detection-diagnosis-staging/talking-with-doctor.html
Survivors in this forum can help you in clearing your doubts. Let us know the details in the pathologist report on the biopsy findings.
Best wishes
VGama
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Do not panic
I was diagnosed in 2017 after a PSA of 25. My prostate was removed, however the cancer recurred and in 2019 I had salvage radiation and six months of hormone therapy. So far so good. Despite the fact that your Dad's PSA is high, if it is cancer it may be very treatable.
The most important thing, if it is cancer, is to get your Dad to the best facility that is manageable for him. I don't know very much about Northwestern Memorial, although it is highly rated as a cancer hospital. However, on the hospital website, using the find a doctor tool, I couldn't find a single radiation oncologist who listed prostate cancer as a specialty. That would make me nervous.
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Stay positive
I too was 68, Gleason 4+3 =7, when diagnosed with PC. I am 71 now. Keep doing what you are doing (research the beast). At this time, my PSA is undetecable; I am fully continent; I am intimate with my wife. I am missing a few parts, but my quality of life is relatively unchanged. Anyway, good luck to you and your Dad on this journey.
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GRATEFUL
I'm overwhelmed by all of you taking the time to respond and give such valuable information. From the bottom of my heart, thank you. I am starting a notebook to keep all of the important info in one place and comprise a list of questions for his next appointment.
VGama, thanks for sharing the specifics of your story, it is definitely encouraging. Also, thank you for pointing out the chance of the biopsy interfering with the MRI. I would've never thought of that and pushed to try and get it done right away.
Eonore, you're right that is worriesome. I had blinders on and was not focusing specifically on PCa which is obviously important as this form of the big C seems to be a completely different beast.
lighterwood67, thank you for sharing. It is wonderful to hear your quality of life hasn't changed much! i Hope it stays that way for many years for everyone going through this.
Josephg, thank you for that advice. Is your medical oncologist one who specializes in PCa? I plan on doing some reaserch, actually A LOT of research this weekend and finding a medical oncologist will be towards the top of my list.
thank you all again very much for the information and kind words! Hopefully we will have some more results the beginning of next week. I will be back to update and I'm sure ask several more questions.
Sincerely
Nikki
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Helpful practice
Nikki,
I also recommend that you get a three-ring binder (notebook) and ask for Paper Copies of every result that any doctor shares with you. Any doc should easily be able to print copies (you have already paid for them). LEAN on the doctor if necessary. People NEVER remember all of what a doctor says in a face-to-face, and online records easily become inaccessable over time, especially if you deal with multiple locations or providers. Get paper copies and retain them. Also, ensure that you have the medical right to your father's results, which of course only your father can grant.
Perineural Invasion is another term to be familiar with, but do not let verbage overwhelm you. As several have mentioned above, PCa is almost never an emergency. You have time to ponder things, and make informed decisions.
max
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Waiting for Confirmation, and Then What....
Welcome to the Forum that nobody wants to join.
Should the biopsy confirm that he in fact does have prostate cancer (PCa), the next step as a patient is to start his research on PCa, and there is a wealth of information on this topic, both here, and in many other places. He will want to understand PCa itself, along with available treatment options, as much as he can, so that he can actively participate in subsequent discussions with the medical professionals regarding any treatment options.
If it turns out that he does in fact have PCa, I strongly recommend that he find and engage a Medical Oncologist to be the long term leader of his PCa medical treatment team. A Medical Oncologist has no professional preference for potential treatment options, such as surgery or radiation, and the Medical Oncologist is the expert in hormone therapies, which may be used in conjunction with other treatments, such as radiation. Personally, I've had PCa for over a decade, and my Medical Oncologist has been at my side for my entire PCa journey. Surgeons and Radiation Oncologists have come and gone with their treatments, at the direction of my Medical Oncologist, but my Medical Oncologist remains my sustaining medical professional and consultant.
Other knowledgeable folks here are already chiming in with their perspectives and suggestions. We are all here to support you and him.
I wish him the best of outcomes on his potential PCa journey, if in fact, it is confirmed that he does have PCa upon receipt of the biopsy results.
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Medical Oncologist
Yes, my Medical Oncologist has a specialty in treating PCa, but that is not the only type of cancer that she treats with her patients. Any large medical institution or center of excellence will have one or more Medical Oncologists on staff who specialize in the treatment of PCa.
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Preparing
That's excellent advice, thank you Max. We have already experienced an issue obtaining medical records in the past week and half after learning his psa results. Got a binder prepared and a notebook to jot down questions and important information.
Josephg, thanks for that advice. I was actually able to make an appointment with an oncologist who specializes in bladder, kidney, and prostate cancer later this month. He is out of loyola which seems like it is going to be the best facility in our area. I'm hoping I get to cancel that appointment once we receive the biopsy results but I wanted to be prepared and know what our next step will be if needed. Hopefully the biopsy results come in tomorrow. This whole hurry up and wait thing is unbearable. Will be back to update once we know more.
Nikki
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We learned my dad's biopsy results today and unfortunately it was not what we were hoping for. 7 out of the 12 specimens were diagnosed as being malignant. The majority of the malignant specemins came from the right side, however there was one from the left side as well. the Gleason score for all specimens on the right side were 7 (4+3) with involvement of 79.5%, 56%, 58.82%, 35%, 62%, 71.2%. The one on the left had a Gleason score of 6(3+3) with 8.4%. There was no perineural involvement seen on any of the specimens. devastated is an understatement. However I am trying to do my best to become as educated as possible so I can be his advocate. I can tell he is overwhelmed and just trying to process things at this point. There is a lot of verbiage I don't understand on the pathology report so I am starting there. The doctor ordered a bone scan and a CT of his abdomen. I asked about a PET scan and he said that may be necessary in the future but not at this point. I am trying to get these scans done in time for his appointment with the uro oncologist next week. Does this seem like standard protocol for scanning at this point? I don't want to go to the appointment next week without all of or as much of the information they're going to be wanting. I am collecting paper copies of all the reports, am going to request the slides to be sent over, and be sure my dad obtains discs with all imaging. Is there anything I'm missing? I thought we'd get answers today but it seems like we just have more questions. Is there ever a point where you stopped having so many questions And felt comfortable with the information you had? I know my dad is looking forward To that, as am I. As my dad's daughter I want to do the best I can to support him and be as helpful as possible. Any tips on what someone did that you found helpful/comforting? Any tips on what not to do?
sross, thank you for the recommendation, I will definitely look him up. Hope you're doing well on This awful journey!
thanks again for any and all informationnikki
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Get a Clinical Stage after proper scans
Hi Nikki,
His doctor is following the common procedure. After a positive diagnosis they want scans to verify spread. With both results plus the DRE and biopsy's path-report the urologist will give you a clinical stage from where a treatment is chosen.
However, the typical bone scintigraphy scan and CT are not that precise to evaluate tiny spread of prostate cancer. They are good in advanced cases (solid tumors). In your shoes I would request a MRI instead of a CT. The PET scan is more appropriate for those that have recurred from a radical treatment (surgery or radiation).
I agree that you should have all the information and scan results for your next meeting. You can postpone the next week's consultation without loosing anything. In fact this arranged consultation is meaningless without proper data in hands.
The voluminous cancer found in the biopsy (7 positive out of 12) justify the high PSA of 24. The Gleason score classify your dad with intermediate-risk but with probabilities of existing spread. One needs to know if there is lymph nodes involvement, localized extraprostatic extensions and bone metastases (bone involvement is not common in Gs7 cases).
Now is the time to educate on therapies to have an idea on consequences so that one can look for the one that gives your dad peace of mind. He needs to know the details and risks associated with each therapy. Doctors do not make decisions but provide recommendations usually guiding patients to their trade. Urologists will suggest surgery as much as radiotherapists suggest radiation.
Surgery (RP) is recommended in contained cases but radiation (RT) is preferred in non-contained or when doubts exist when judging containment. Radiation covers the whole gland including surrounding areas. This is the main reason to get a more precise scan with MRI to get targets.
I understand the panic and anxiety you your dad and family are going through. One tends to opt to get it out the soonest. Thought the case is positive and voluminous, it doesn't mean that you should treat it blindfold. Your dad's status doesn't get worse in a matter of 3 to 4 months. Take the steps timely and wisely.
Sorry for the positive diagnosis.
Best wishes and luck in this journey.
VGama
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Time to do your homework
Hi Nik,
Good advice from Vasco, he's the man. If it was me I would want to make sure that the cancer has not spread outside the Prostate via CAT, MRI or Pet. Once you know where the cancer is located you can determine wether your Dad want to do surgery or radiation. As Vasco has said now is the time to look at the various treatment plans to neutralize his cancer. Second opinions/reviews might not be a bad idea to look into. A lot of advances in surgery and radiation therapies over recent years means a better chance or arresting your Dads cancer. Your going down the right path and most of us have been where you are going so I hope we can help. I have included a link to get you started.
https://www.cancer.org/cancer/prostate-cancer/treating.html
Dave 3+4
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Consult Multiple Specialties
After you get the results from the scans mentioned above, I would suggest consulting a radiation oncologist in addition to your urologist. Most urologists defer toward surgery. I would also echo Vasco's advice to have a 3T MRI instead of a CT scan.
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Scary week ahead
Thank you all for the advice and kind words. My dad's scans are scheduled for tomorrow. I'm hoping and praying all things point to the cancer being contained. we will definitely be inquiring about a 3t MRI before any treatment plan is made but after he has had adequate time to heal from the biopsy. As I said before, I was able to get him into an oncologist at Loyola who specializes in prostate cancer this week. He has also opted to keep his follow up with his urologist in 2 weeks. Who does the staging? Or is that something you would recommend getting multiple opinions on. We are obviously in the beginning stages of this and are not quite sure where or with whom he is going to end up with For treatment. At the moment, we're just trying to get as much information as possible and seek out a doctor who he trusts, feels comfortable with, and also has a good reputation and a lot of experience in his field. A big order but one I feel is necessary. Also, if anyone has any literature they found helpful (I did already follow all links that have been included in comments), please let me know. I've requested several books from the library. if anyone has a specific one they found beneficial, please let me know.
nikki0 -
I like your way of investigation
Any specialist on prostate cancer can give a Clinical Stage based on retrieved data. Typically this is done upfront by an urologist which information is checked in second opinions.
Staging concerns mostly the spread of cancer. It could be contained (T1 and T2 group) or it could be non-contained (T3 and T4 group). Your dad is at the present T2c. If the scan identifies spread his case would become T3. The stage T4 would be considered with bone or lymph node involvement.
T4 cases are usually moved into palliative treatments such as hormonal (ADT) or chemotherapy. T3 cases with identified extraprostatic extensions are recommended for radiotherapy (RT) but some doctors recommend the combined treatment of surgery plus radiation which leads to doubling the risks and side effects. T1 cases are those found by accident that typically become classified as T2 once further examinations are done. T2 cases involve surgery or radiation depending on patient’s wishes. Surgery is connected mostly to ED erection dysfunction and incontinence, and radiation to proctitis and cystitis.
Doctors also classify each case by the risks. Low risk cases such as Gs6 or Gs7 with one or two positive cores or 3 and 4 positive cores with low % of cancerous tissues (less than 10%) are recommended for Active Surveillance. The success rates as seen in similar contained cases either treated with RP or RT do not differ much. Please read this link;
https://pubmed.ncbi.nlm.nih.gov/31875247/
https://www.cancer.org/cancer/prostate-cancer/treating/by-stage.html
Trusting the doctor and stuff treating us is a step forward for a successful outcome.
You doing well in investigating further.
Best wishes
VGama
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Summation
Nik,
Like everyone else, I agree with all that Vasco wrote to you in his post of 10/21 above.
Scanning varies in accuracy and usefulness, but you may as well agree to any and all scans that the doctors recommend. But be aware (as others have said) that 'Negative' results (results that show no spread) are very commonly 'false negatives' (they show no spreading when in fact metastasis has occured). So, it is better to get negative results, but they do not prove lack of metastasis.
Also as Vasco noted, high PSA and high volumetric involvement, such has your dad has, indicates strongly that there is LIKELY metastasis. I (if it were me) would proceed AS IF it were metastatic, which means therapudic radiation (RT) and possibly some forms of hormonal (HT) use also. But only your doctor can recommend this. Like all others here, I have NO medicical credentials, and we may not give medical advice, per the Site Rules -- only what we would do, given our experiences and what we have learned over the years and decades. It is Layman's insight and support.
Even cases of moderate metastasis are often curable (via radiation given toward curative effect, almost always IMRT), and certainly controllable, sometimes even for decades, so there is much cause for hope in his current level of diagnosis, and certainly no cause for dispair. I would be seeing a Radiation Oncologist, and one who specifically focuses on PCa
max
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Get it out
Consider strongly robotic surger. get a great doc, seek recommendations from friends. PSA that high is almost a no-brainer cancer but don't fear the surgery it'll be alright, takes awhile to recover for some things but you can indeed recover. I've never used this website but wish I could give more pointers. If go forward with surgery be sure to ask doc to send you to somewhere to learn Kegel exercises, and in a big way! you don't want to deal with incontinence afterwards. it worked for me several weeks before surgery- no pads for me!!
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Options…grateful to have them!
Today was my dad's appointment with the uro/oncologist. According to his bone scan and CT, there is no evidence of spread (Cannot even begin to describe how grateful I was to learn this). His recommendation is to remove the prostate. His reasons were: my dad is a very healthy 68 year old, the Gleason score of 4+3 and his psa of 24 indicate a higher risk/possibly more aggressive cancer, it has less risk of the side effects my dad is concerned about, and if he receives radiation 1st and it fails it makes surgery a much more difficult one. Surgery is what my dad has been hoping for so I know he was happy to hear that it is an option and according to this doctor, the best one at this point. He discussed the possible and probable side effects with my dad and he is comfortable with all of them. The earliest they can schedule is January which he assured us, waiting that long will not change anything. Im not thrilled about the possibility of treatment being that far away but thats obviously out of my control. We will go to his urologist tomorrow to get his input as well but at this point, I know my dad is hoping for surgery. I vetted the dr we seen today to the best of my ability. he is located at a very well known teaching facility's our area, has done over 1000 of these procedures, and teaches them often. My dad was comfortable with him so that is very nice as well. I also liked him even though I found his arrogance to be a bit much. But Like my dad said, he'd rather him be confident than not. How did any of you go about choosing your surgeon? my plan is to continue reasearching and possibly Have him get yet another opinion. It seems like we will have time if he does decide on surgery. while this is still a very difficult thing to deal with, the results of the scans were the best news we could've hoped for at this point. I feel like I took my 1st real breath since learning his psa results. I'm praying we continue to get the best possible news and he able To be cured!
nikki
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