inconclusive Biopsy

Mrs.Mack
Mrs.Mack Member Posts: 12
in Esophageal Cancer #1

I posted earlier this week about my dads recent diagnosis and we now have some progress. Tuesday dad was told he is T2N1M- still unknown. We are set for 5 weeks of chemo and radiation. He goes for the full CT and PET scan wednesday next week. However, we have been asking about the pathology reports we were told that the biopsy didnt  get a large enough section of the tumor, but the needle aspiration obtained "some tumor cells" that were suspicious +  the Endoscopic ultrasound doctors opnion from visulalizing the area that it was Cancer positive. Tuesday, the Esophageal surgeon said even with the suspicion of it being cancer he wants the full course of treatment to include surgery. Better to error on the side of caution. Dad is ok with the chemo/radiation but would rather forgo the surgery if he could. The surgeon says No, im quite sure you have cancer and even preventitively this is the best option. Today I get the phone call that the final biopsy report is "inconclusive".

They are hesitent to try another scope as it took two attempts ( over 2.5 weeks) to get this last biopsy, due to his excessive narrowing and stricture etc.

Has anyone had an inconclusive biopsy, but had every doctor so sure it was cancer?

Is waiting a few weeks to possibly get the same results worth it? Or since early agressive treatment is the best treatment would you stay the course and nip this in the bud. Wont the PET scan be a little more conclusive? I pray it is and that it shows no other organ involvement.

Whats your opinion/thoughts on this.

I am in the process of trying to get a second opinion, but ultimately, dad and I agree that he will do chemo/radation/surgery as a precaution if thats what everyone comes up with. Wouldnt want forgo anything being hopeful and end up being wrong. The initial diagnosis left us devistated and dad scared and hopeless then just when we start working through it and getting our direction figured out; becoming hopeful we get this. Its confusing all over again now....

Comments

  • paul61
    paul61 Member Posts: 1,391 Member
    #2
    I would definately get a second opinion

    It does seem a bit rushed to ask someone to start a specifc cancer treatment without some agreement in the clinical pathology that they had a specific kind of cancer. I am a bit confused about the difficulty obtaining a conclusive tumor sample. I assume the initial sample was taken during an EGD? I assume if they can get an endoscopic ultra sound probe down there to image the area there must be room to take another slide sample?

    I think if I were in your position I would consider a second opinion as soon as possible. There may be good reason to begin some treatment to save lost time; but as someone who has been through an Ivor Lewis esophagectomy, I would not move forward with surgery until I had a conclusive pathology report.

    The PET scan can indicate increased metabolic activity in the region where cancer is suspected but I am not aware of a way to provide a definative cancer classification in the absence of a conclusive clinical pathology report. Can you be specific about their reason for not getting a more conclusive sample?

    Perhaps I am just not understanding the situation.

    If all his doctors are sure it is indeed esophageal cancer I would begin the chemotherapy and radiation therapy but before I selected a surgeon and went to surgery I would get a conclusive biopsy report.

    Best Regards,

    Paul Adams

    McCormick, South Carolina
    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

     

  • Mrs.Mack
    Mrs.Mack Member Posts: 12
    #3
    paul61 said:

    I would definately get a second opinion

    It does seem a bit rushed to ask someone to start a specifc cancer treatment without some agreement in the clinical pathology that they had a specific kind of cancer. I am a bit confused about the difficulty obtaining a conclusive tumor sample. I assume the initial sample was taken during an EGD? I assume if they can get an endoscopic ultra sound probe down there to image the area there must be room to take another slide sample?

    I think if I were in your position I would consider a second opinion as soon as possible. There may be good reason to begin some treatment to save lost time; but as someone who has been through an Ivor Lewis esophagectomy, I would not move forward with surgery until I had a conclusive pathology report.

    The PET scan can indicate increased metabolic activity in the region where cancer is suspected but I am not aware of a way to provide a definative cancer classification in the absence of a conclusive clinical pathology report. Can you be specific about their reason for not getting a more conclusive sample?

    Perhaps I am just not understanding the situation.

    If all his doctors are sure it is indeed esophageal cancer I would begin the chemotherapy and radiation therapy but before I selected a surgeon and went to surgery I would get a conclusive biopsy report.

    Best Regards,

    Paul Adams

    McCormick, South Carolina
    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

     

    We have had 2 scopes with

    We have had 2 scopes with stretching, and we have had two attempts at an Esophageal Ultrasound. They have had great difficulty obtaining all of these due to how "tight and narrowed" my dads esopphagus is. They have tried to stretch it each time, tearing it everytime, so they could pass th ultasound scop down, however it immediately goes back t its pre stretched position.

    this past Friday -They eventually had to use a pediatric ultrasound scope and agian tried to stretch it and ultrasound (to better visualize the area they were inspecting) They located the tumor and and were able to "grab just a little bit" of it. they said the limitation of room to move aound caused the difficulty obtaining a bigger sample.  

    Tuesday- with our chemo dr., Dr. Baranda wha says- dr. oyaee reports after ultrasound you are found to be T2N1. I asked what type of cancer it was and she tells us that the actual results were not finished (the biopsy was done this last friday so only 4 days had passed)  But Dr. Oyaee says its cancerous and preliminary biopsy looks suspicous for cancer cells

    Wednesday- we went to meet with the Surgical Dr. just to learn what his plans are 12 weeks from now and we again asked him what the report is and he says its inconclusive but we must wait for the final test to be completed on the tissue, but there is a good chance no difinative answer will be obtained. Dad asked if we should try redoing the Ultrasound and get a new biopsy and our surgeon stated that if dr. Oyaee says he seen cancer that its most likely an accurate ussumption and we are better to continue on the course were on because an inconclusive test doesnt mean there is NO cancer.

    Thursday( yesterday)- afternoon we get a call from Dr. Oyaee's office and his nurse says the final report was "Inconclusive" and they would forward results to our chemo dr. and we should follow up with her the next day (today). So i was just perplexed. and frustrated. They were still encouraging treatment "to be safe"

    Thursday night after I posted- I get a phone call from Dr. Oyaee's nurse who says she's sooo sorry, that the Pathologist called her with the FINAL results and it is Adenocarcinoma positive and she waited to call us untill she had the "hard copy" to be completely sure.

    she explains that this was a rushed deal per the requests of Dr. Oyeaa, who strongly felt it was cancerous and wanted to give dad the best chance possible and that was immediately starting he treatment process. So essentially, all this confusion was because they were going off the word of a doctor and didnt actually wait for the confirmation report.  I notified his nurse that we appreciated how aggressive Dr. Oyaee was but the information should not have been handled this way because it lead to alot of confusion and anxiety.

    Today, Im awaiting MD andersons call, and we meet with the Radiation Oncologist.

    One more question. Dad will most likely (as of now) be having an laproscopic Esophegectomy, we know to anticipate the hospital stay and the few months after to recover etc but how has it changed your eating etc. Dad really wants to eat food food again. I assume he'll need to eat smaller meals but will there be anything he absolutly cant have or should avoid how long should he expect to be on liquids after?

    - Truely greatful for all input, Paul!

     

  • Mrs.Mack
    Mrs.Mack Member Posts: 12
    #4
    paul61 said:

    I would definately get a second opinion

    It does seem a bit rushed to ask someone to start a specifc cancer treatment without some agreement in the clinical pathology that they had a specific kind of cancer. I am a bit confused about the difficulty obtaining a conclusive tumor sample. I assume the initial sample was taken during an EGD? I assume if they can get an endoscopic ultra sound probe down there to image the area there must be room to take another slide sample?

    I think if I were in your position I would consider a second opinion as soon as possible. There may be good reason to begin some treatment to save lost time; but as someone who has been through an Ivor Lewis esophagectomy, I would not move forward with surgery until I had a conclusive pathology report.

    The PET scan can indicate increased metabolic activity in the region where cancer is suspected but I am not aware of a way to provide a definative cancer classification in the absence of a conclusive clinical pathology report. Can you be specific about their reason for not getting a more conclusive sample?

    Perhaps I am just not understanding the situation.

    If all his doctors are sure it is indeed esophageal cancer I would begin the chemotherapy and radiation therapy but before I selected a surgeon and went to surgery I would get a conclusive biopsy report.

    Best Regards,

    Paul Adams

    McCormick, South Carolina
    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

     

    We have had 2 scopes with

    We have had 2 scopes with stretching, and we have had two attempts at an Esophageal Ultrasound. They have had great difficulty obtaining all of these due to how "tight and narrowed" my dads esopphagus is. They have tried to stretch it each time, tearing it everytime, so they could pass th ultasound scop down, however it immediately goes back t its pre stretched position.

    this past Friday -They eventually had to use a pediatric ultrasound scope and agian tried to stretch it and ultrasound (to better visualize the area they were inspecting) They located the tumor and and were able to "grab just a little bit" of it. they said the limitation of room to move aound caused the difficulty obtaining a bigger sample.  

    Tuesday- with our chemo dr., Dr. Baranda wha says- dr. oyaee reports after ultrasound you are found to be T2N1. I asked what type of cancer it was and she tells us that the actual results were not finished (the biopsy was done this last friday so only 4 days had passed)  But Dr. Oyaee says its cancerous and preliminary biopsy looks suspicous for cancer cells

    Wednesday- we went to meet with the Surgical Dr. just to learn what his plans are 12 weeks from now and we again asked him what the report is and he says its inconclusive but we must wait for the final test to be completed on the tissue, but there is a good chance no difinative answer will be obtained. Dad asked if we should try redoing the Ultrasound and get a new biopsy and our surgeon stated that if dr. Oyaee says he seen cancer that its most likely an accurate ussumption and we are better to continue on the course were on because an inconclusive test doesnt mean there is NO cancer.

    Thursday( yesterday)- afternoon we get a call from Dr. Oyaee's office and his nurse says the final report was "Inconclusive" and they would forward results to our chemo dr. and we should follow up with her the next day (today). So i was just perplexed. and frustrated. They were still encouraging treatment "to be safe"

    Thursday night after I posted- I get a phone call from Dr. Oyaee's nurse who says she's sooo sorry, that the Pathologist called her with the FINAL results and it is Adenocarcinoma positive and she waited to call us untill she had the "hard copy" to be completely sure.

    she explains that this was a rushed deal per the requests of Dr. Oyeaa, who strongly felt it was cancerous and wanted to give dad the best chance possible and that was immediately starting he treatment process. So essentially, all this confusion was because they were going off the word of a doctor and didnt actually wait for the confirmation report.  I notified his nurse that we appreciated how aggressive Dr. Oyaee was but the information should not have been handled this way because it lead to alot of confusion and anxiety.

    Today, Im awaiting MD andersons call, and we meet with the Radiation Oncologist.

    One more question. Dad will most likely (as of now) be having an laproscopic Esophegectomy, we know to anticipate the hospital stay and the few months after to recover etc but how has it changed your eating etc. Dad really wants to eat food food again. I assume he'll need to eat smaller meals but will there be anything he absolutly cant have or should avoid how long should he expect to be on liquids after?

    - Truely greatful for all input, Paul!

     

  • paul61
    paul61 Member Posts: 1,391 Member
    #5
    Mrs.Mack said:

    We have had 2 scopes with

    We have had 2 scopes with stretching, and we have had two attempts at an Esophageal Ultrasound. They have had great difficulty obtaining all of these due to how "tight and narrowed" my dads esopphagus is. They have tried to stretch it each time, tearing it everytime, so they could pass th ultasound scop down, however it immediately goes back t its pre stretched position.

    this past Friday -They eventually had to use a pediatric ultrasound scope and agian tried to stretch it and ultrasound (to better visualize the area they were inspecting) They located the tumor and and were able to "grab just a little bit" of it. they said the limitation of room to move aound caused the difficulty obtaining a bigger sample.  

    Tuesday- with our chemo dr., Dr. Baranda wha says- dr. oyaee reports after ultrasound you are found to be T2N1. I asked what type of cancer it was and she tells us that the actual results were not finished (the biopsy was done this last friday so only 4 days had passed)  But Dr. Oyaee says its cancerous and preliminary biopsy looks suspicous for cancer cells

    Wednesday- we went to meet with the Surgical Dr. just to learn what his plans are 12 weeks from now and we again asked him what the report is and he says its inconclusive but we must wait for the final test to be completed on the tissue, but there is a good chance no difinative answer will be obtained. Dad asked if we should try redoing the Ultrasound and get a new biopsy and our surgeon stated that if dr. Oyaee says he seen cancer that its most likely an accurate ussumption and we are better to continue on the course were on because an inconclusive test doesnt mean there is NO cancer.

    Thursday( yesterday)- afternoon we get a call from Dr. Oyaee's office and his nurse says the final report was "Inconclusive" and they would forward results to our chemo dr. and we should follow up with her the next day (today). So i was just perplexed. and frustrated. They were still encouraging treatment "to be safe"

    Thursday night after I posted- I get a phone call from Dr. Oyaee's nurse who says she's sooo sorry, that the Pathologist called her with the FINAL results and it is Adenocarcinoma positive and she waited to call us untill she had the "hard copy" to be completely sure.

    she explains that this was a rushed deal per the requests of Dr. Oyeaa, who strongly felt it was cancerous and wanted to give dad the best chance possible and that was immediately starting he treatment process. So essentially, all this confusion was because they were going off the word of a doctor and didnt actually wait for the confirmation report.  I notified his nurse that we appreciated how aggressive Dr. Oyaee was but the information should not have been handled this way because it lead to alot of confusion and anxiety.

    Today, Im awaiting MD andersons call, and we meet with the Radiation Oncologist.

    One more question. Dad will most likely (as of now) be having an laproscopic Esophegectomy, we know to anticipate the hospital stay and the few months after to recover etc but how has it changed your eating etc. Dad really wants to eat food food again. I assume he'll need to eat smaller meals but will there be anything he absolutly cant have or should avoid how long should he expect to be on liquids after?

    - Truely greatful for all input, Paul!

     

    Lifestyle changes with food are primarily volume related

    Food changes after surgery are primarily volume related. I typically eat seven to eight times a day in small amounts. I eat just about everything but I have to be careful with foods that are high in sugar content as they can cause diarrhea.

    There is an evolutionary period after surgery where your Dad’s body will need to adjust to his new digestive system. During that time he will need to follow a special diet that will be provided by his surgeon, but within a few months he should be back to eating all the foods he enjoys today, just in smaller amounts.

    When I was first discharged from the hospital after surgery I had what is called a jejunostomy tube or “j-tube” in my abdomen to augment the liquid diet I was prescribed. I was fed a liquid formula through the j-tube while I slept.

    After about two weeks I changed to a soft diet and was able to eat enough by mouth so that I no longer needed the j-tube. During this time I needed to concentrate on foods that were high in protein and avoid foods that contained simple carbohydrates and sugar (these would cause “dumping syndrome” a common issue for people who have had gastric surgery).

    After about two months my diet became more normal but I still had to restrict volume for about a third of what I had eaten prior to surgery.

    As time goes on the amount he will be able to eat will increase, as well as the variety, until his diet is back to normal. I my case it took about a year before I could eat anything I wanted. The primary difference is in volume that can be eaten. Where before I would eat an 8 ounce steak with vegetable and desert; now a full meal for me would be 4 ounces of steak, half a baked potato, and half of a desert portion. My wife and I split almost everything when we eat out. So your Dad will be able to eat the things he likes, just in smaller amounts.

    Best Regards,

    Paul Adams

    McCormick, South Carolina
    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
    Cisplatin, Epirubicin, 5 FU - Three Year Survivor

     

     

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