What treatments are available for 82 years old female patient? She has dysplasias cells in her ampulla blocking the bile fluid flow. Her 2 stents cannot maintain the flow.
Totally agreed. Several times I've sat for hours in a waiting room because I didn't want to bother the overworked staff. When they finally got to me they apologized profusely and said I should have come out or called them! Sometimes it just slips through the cracks unintentionally, and you don't want anything to be found too late.
patient not being treated at Mayo clinic. Her specimen sent to Mayo for second reading. Her most recent tissue taken on 4/18/2024 via EUS at the joint of ampulla and pancreatic duct came back negative for malignancy. Only one specimen taken at ampulla in April 2023 via ercp came back from Mayo as ambillary cancer. She had several pet scans, one biopsy done on liver, and several CT scans, all came back without positive result for cancer. We don't understand why her oncologist said her cancer is at stage 4 and no treatment. The only specimen confirmed by Mayo as cancer is not large enough for her2 testing. What should we do ?
patient not being treated at Mayo clinic. Her specimen sent to Mayo for second reading. Her most recent tissue taken on 4/18/2024 via EUS at the joint of ampulla and pancreatic duct came back negative for malignancy. Only one specimen taken at ampulla in April 2023 via ercp came back from Mayo as ambillary cancer. She had several pet scans, one biopsy done on liver, and several CT scans, all came back without positive result for cancer. We don't understand why her oncologist said her cancer is at stage 4 and no treatment. The only specimen confirmed by Mayo as cancer is not large enough for her2 testing. What should we do ?
@qq1, that is all very perplexing and confusing. It certainly seems like good news that the 2024 results indicate that there is no evidence of disease (NED). This is not completely unheard of that cancer goes into remission. However, I can understand your unease at believing that. Was something missed in 2024? Was there a misinterpretation in 2023?
Am I understanding correctly, that the diagnoses stands that she is living with stage 4 cancer, currently in remision and therefore no active treatment is necessary at the moment? Thus she is on active surveillance and will continue to be monitored every 3, 6 or 12 months?
@qq1, that is all very perplexing and confusing. It certainly seems like good news that the 2024 results indicate that there is no evidence of disease (NED). This is not completely unheard of that cancer goes into remission. However, I can understand your unease at believing that. Was something missed in 2024? Was there a misinterpretation in 2023?
Am I understanding correctly, that the diagnoses stands that she is living with stage 4 cancer, currently in remision and therefore no active treatment is necessary at the moment? Thus she is on active surveillance and will continue to be monitored every 3, 6 or 12 months?
We are just as confused. The medical group she is member only diagnosed her with ampulla dysplasia. The past year. Only Mayo came back with ampulla cancer on 2023 specimen this April 2024. Her oncologist said her specimen were too small to get a cancer cell. She was on a routine to place a metal stent to maintain her bile flow from 2/2023 to 1/2024. She currently has strong pain in her abdomen, placed on full liquid diet and pain medicine. No procedure can be done to relieve her pain. No surgery, no radiation , no chemo，no drain. She is not in remission.
Oncologist letting her cancer to progress on palliative care. We want to make sure her diagnosis is accurate, so she can get a viable treatment plan. No cancer team has been formed. What should we do, get a second opinion on oncologist,?
1) Patient was diagnosed w/ ampullary cancer from tissue taken in 2023?
2) No treatment (other than palliative) has been proposed, and no cancer team has been formed?
--> Ignore all other considerations and get a second opinion!
Sorry you have to form your own team, but this is what is has come to. You may have to ask her current oncologist exactly why they consider it stage IV. You should also ask the treating oncologist (and any other doctors she has access to) for prompt referral to a pancreatic center of excellence (CoE). Absent a timely referral, you can also start making those phone calls yourself.
If you're able to get to a CoE, they may also do additional testing, including MRI instead of PET or CT. Sometimes it takes a different set/kind of eyes to see what's really going on; specifically whether it's a treatable stage II/III condition or a stage IV condition that could be "managed" or treated palliatively per the patient's decision.
Mayo might be the quickest approach since they've already seen the tissue, but there are plenty of other CoEs that might be quicker and/or closer to home.
While you're searching for that second opinion, do all you can to get copies of the records the second-opinion provider would want.
1) Patient was diagnosed w/ ampullary cancer from tissue taken in 2023?
2) No treatment (other than palliative) has been proposed, and no cancer team has been formed?
--> Ignore all other considerations and get a second opinion!
Sorry you have to form your own team, but this is what is has come to. You may have to ask her current oncologist exactly why they consider it stage IV. You should also ask the treating oncologist (and any other doctors she has access to) for prompt referral to a pancreatic center of excellence (CoE). Absent a timely referral, you can also start making those phone calls yourself.
If you're able to get to a CoE, they may also do additional testing, including MRI instead of PET or CT. Sometimes it takes a different set/kind of eyes to see what's really going on; specifically whether it's a treatable stage II/III condition or a stage IV condition that could be "managed" or treated palliatively per the patient's decision.
Mayo might be the quickest approach since they've already seen the tissue, but there are plenty of other CoEs that might be quicker and/or closer to home.
While you're searching for that second opinion, do all you can to get copies of the records the second-opinion provider would want.
Answer to both your questions are no. Unfortunately patient health plan is HMO in southern CA. Getting second opinion within same HMO first , but different facility..
Answer to both your questions are no. Unfortunately patient health plan is HMO in southern CA. Getting second opinion within same HMO first , but different facility..
Correction- answer is yes to both questions . Your reply is helpful. We are seeking second opinion from a different facility within same HMO and try to build a Cancer care team.
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Totally agreed. Several times I've sat for hours in a waiting room because I didn't want to bother the overworked staff. When they finally got to me they apologized profusely and said I should have come out or called them! Sometimes it just slips through the cracks unintentionally, and you don't want anything to be found too late.
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Like -
Helpful -
Hug
2 Reactionspatient not being treated at Mayo clinic. Her specimen sent to Mayo for second reading. Her most recent tissue taken on 4/18/2024 via EUS at the joint of ampulla and pancreatic duct came back negative for malignancy. Only one specimen taken at ampulla in April 2023 via ercp came back from Mayo as ambillary cancer. She had several pet scans, one biopsy done on liver, and several CT scans, all came back without positive result for cancer. We don't understand why her oncologist said her cancer is at stage 4 and no treatment. The only specimen confirmed by Mayo as cancer is not large enough for her2 testing. What should we do ?
@qq1, that is all very perplexing and confusing. It certainly seems like good news that the 2024 results indicate that there is no evidence of disease (NED). This is not completely unheard of that cancer goes into remission. However, I can understand your unease at believing that. Was something missed in 2024? Was there a misinterpretation in 2023?
Am I understanding correctly, that the diagnoses stands that she is living with stage 4 cancer, currently in remision and therefore no active treatment is necessary at the moment? Thus she is on active surveillance and will continue to be monitored every 3, 6 or 12 months?
-
Like -
Helpful -
Hug
1 ReactionWe are just as confused. The medical group she is member only diagnosed her with ampulla dysplasia. The past year. Only Mayo came back with ampulla cancer on 2023 specimen this April 2024. Her oncologist said her specimen were too small to get a cancer cell. She was on a routine to place a metal stent to maintain her bile flow from 2/2023 to 1/2024. She currently has strong pain in her abdomen, placed on full liquid diet and pain medicine. No procedure can be done to relieve her pain. No surgery, no radiation , no chemo，no drain. She is not in remission.
Oncologist letting her cancer to progress on palliative care. We want to make sure her diagnosis is accurate, so she can get a viable treatment plan. No cancer team has been formed. What should we do, get a second opinion on oncologist,?
-
Like -
Helpful -
Hug
1 Reaction@qq1 , If I may attempt to summarize:
1) Patient was diagnosed w/ ampullary cancer from tissue taken in 2023?
2) No treatment (other than palliative) has been proposed, and no cancer team has been formed?
--> Ignore all other considerations and get a second opinion!
Sorry you have to form your own team, but this is what is has come to. You may have to ask her current oncologist exactly why they consider it stage IV. You should also ask the treating oncologist (and any other doctors she has access to) for prompt referral to a pancreatic center of excellence (CoE). Absent a timely referral, you can also start making those phone calls yourself.
If you're able to get to a CoE, they may also do additional testing, including MRI instead of PET or CT. Sometimes it takes a different set/kind of eyes to see what's really going on; specifically whether it's a treatable stage II/III condition or a stage IV condition that could be "managed" or treated palliatively per the patient's decision.
Mayo might be the quickest approach since they've already seen the tissue, but there are plenty of other CoEs that might be quicker and/or closer to home.
While you're searching for that second opinion, do all you can to get copies of the records the second-opinion provider would want.
Wishing you all the best!
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Hug
3 ReactionsAnswer to both your questions are no. Unfortunately patient health plan is HMO in southern CA. Getting second opinion within same HMO first , but different facility..
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Helpful -
Hug
2 ReactionsCorrection- answer is yes to both questions . Your reply is helpful. We are seeking second opinion from a different facility within same HMO and try to build a Cancer care team.
-
Like -
Helpful -
Hug
4 Reactions