Newly diagnosed and don't know what to do!

mardigras
mardigras Member Posts: 215 Member
in Esophageal Cancer #1
Hello everyone,
My husband Rob was diagnosed with EC three weeks ago.
He has an 8cm tumour at the base of his esoph. with a suspicious looking ganglion close to
it. The surgeon says that, from the scan, he does not think the tumour has spread to any other organs.
Rob has minimal discomfort when he eats, which led to the diagnosis along with a rapid loss of weight. He does not have a problem swallowing.
We are in Gran Canaria where we live now and our Spanish is not perfect. Some of the surgeon's diagnosis is lost in translation, i'm sure.
I asked the surgeon what experience he had with this type of surgery and he said that he had done three or four and his boss (who he would be doing thee surgery with his assistance) had done more. It was all a bit woolly and I think they are a bit provincial here. Ego's easily bruised etc. I didn't feel I could push it, especially as Rob had been fast tracked.
The surgeon says that Rob will see the oncologist on Friday and from there a course of chemo would be necessary to try and shrink the large tumour and because of the ganglion.
After the chemo he would perform surgery. I don't yet know what type of surgery. ie: Ivor Lewis or MIE or something else. Only that he said it was a serious surgery.
I really would appreciate any advice or help from anyone who has experienced these procedures. Rob doesn't want anyone to know so the help I can get here is limited.
I have been given a telephon number by Sammy of Dr Luketich and I am going to try and pay for a telephone consultation with him. I don't know if that is possible.
If you have read my lengthy post. THANK YOU.
God Bless you all. Hugs and Prayers. Marci X

Comments

  • NikiMo
    NikiMo Member Posts: 342
    #2
    Need more info
    Hi Marci,

    Sorry you had to find your way to this board. First off we need more info, what stage is your husband, and what is a ganglion (is it a lymph node)? Have you had a EUS, PET scan, and CT scan? The doctors need to use all of those to determine the staging, maybe the oncologist will order those if it hasn't been done already. If you husband is stage 3 or loower then a surgery option is available. Unfortunately surgery is not available to stage 4 patients. If you husband can have the surgery I would strongly suggest that you choose a doctor who does 2 or more of these surgeries A WEEK. This is a delicate procedure and you need an expierienced thoracic surgeon. Do you have family in the states? A move home for a short time may be necessary to get proper treatment. This is a serious cancer and is fairly rare.

    Niki
    Wife of Jeff T2N1M0
    IL 9/6/11
  • paul61
    paul61 Member Posts: 1,392 Member
    #3
    Contact information for Dr. Luketich
    Marci,

    I would definitely recommend a consultation with Dr. Luketich. He will need any scans or test results sent in advance. The folks in his office will help you coordinate the information exchange and consultation.
    ______________________________________________________________________
    His contact information is:

    James D. Luketich, MD
    University of Pittsburgh Physicians
    Department of Cardiothoracic Surgery, Division of Thoracic Surgery
    UPMC Cancer Centers

    Office Address(es):
    UPMC Presbyterian, Digestive Disorders Center
    200 Lothrop Street
    Pittsburgh, PA 15213
    Phone: (412) 647-7555

    Here is the reference to the web site that contains his contact information including how to schedule appointments:

    http://findadoc.upmc.com/PhysicianBioQuery.aspx?ID=1604

    _______________________________________________________________________________________________


    You do not include any staging information for your husband. It sounds like he may have had a CT scan to rule out metastasis to other organs. To complete his staging he should have an endoscopic ultrasound (EUS) to define depth of penetration of the tumor into the esophagus and potential nodal involvement.

    _______________________________________________________________________________________________

    Endoscopic Ultrasound (EUS) combines endoscopy and ultrasound in order to obtain images and information about the digestive tract and the surrounding tissue and organs. Endoscopy refers to the procedure of inserting a long flexible tube via the mouth to visualize the digestive tract.

    http://www.medicinenet.com/endoscopic_ultrasound/article.htm
    ______________________________________________________________________________________________


    Assuming your husband is Staged at Stage 3 or below he would be a candidate for trimodality therapy consisting of chemotherapy, radiation therapy, and surgery.

    http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=41&abstractID=285

    ________________________________________________________________________________________________


    As you can see below, I am a cancer survivor. My surgery was an Ivor Lewis approach. I was not aware at the time I had my surgery that a minimally invasive approach was available. My in hospital time was 12 days in part due to an infection in both surgical incisions. I would recommend you investigate the availability of a minimally invasive approach.

    I am also including a reference for the Hillman Cancer Center at UMPC that lists a number of helpful resources for publications relating to esophageal cancer and support activities.
    _______________________________________________________________________________________________

    http://www.upmccancercenters.com/portal_headneck/resources.cfm
    _______________________________________________________________________________________________

    I hope this information is helpful in finding your husband quality treatment. Curative surgery for esophageal cancer is a MAJOR surgery and I think your best chance at a positive outcome is to travel to a major cancer treatment center with expertise in the procedure and management of after care.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    3/14/2011 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • chemosmoker
    chemosmoker Member Posts: 501
    #4
    Run away?
    Marci,
    From the sound of your post, I would NOT let that doctor operate on my foot, much less handle something with such a HUGE mortality rate for the surgery alone, much less the cancer itself, as EC surgery.

    I am stage IV so I cannot benefit from any surgery, but from reading the boards and talking to survivors for the last four months, I would heed the advice you are reading in the post from Paul, Niki and others, and DO NOT do any surgery where they don't do this exact procedure(s) (IL or MIE or THE) that many times in a WEEK!!!!!

    God bless and good luck. DO NOT allow anything you do not feel 110% comfortable with.
    There is NO room for error with this type of cancer. I will pray for you both.

    -Eric
  • mardigras
    mardigras Member Posts: 215 Member
    #5
    NikiMo said:

    Need more info
    Hi Marci,

    Sorry you had to find your way to this board. First off we need more info, what stage is your husband, and what is a ganglion (is it a lymph node)? Have you had a EUS, PET scan, and CT scan? The doctors need to use all of those to determine the staging, maybe the oncologist will order those if it hasn't been done already. If you husband is stage 3 or loower then a surgery option is available. Unfortunately surgery is not available to stage 4 patients. If you husband can have the surgery I would strongly suggest that you choose a doctor who does 2 or more of these surgeries A WEEK. This is a delicate procedure and you need an expierienced thoracic surgeon. Do you have family in the states? A move home for a short time may be necessary to get proper treatment. This is a serious cancer and is fairly rare.

    Niki
    Wife of Jeff T2N1M0
    IL 9/6/11

    Newly diagnosed
    Hi Niki,
    Thank you taking the time to reply, it really is appreciated.
    My husband has not been staged as I understand it. They do things a bit differently in Spain.
    Firstly, I don't really know what a ganglion is except that on wikipedia it says a tissue mass of nerve cells.
    The surgeon here has said that they will do chemo first to shrink the tumour at the base of Rob's esophagus. The tumour is large (8cms), then he will operate.
    We don't have family in the States, but we do have some savings. If it is enough then I
    can't think of a better way to spend it.
    I am going to try and contact UPMC and see if I can get this information on costs. I know it will be eye wateringly expensive.
    Our home is in the UK, but I don't know how to find out who would have done several surgeries a week there.
    Thanks again for the advice
    Hugs and prayers Marci x
  • mardigras
    mardigras Member Posts: 215 Member
    #6
    paul61 said:

    Contact information for Dr. Luketich
    Marci,

    I would definitely recommend a consultation with Dr. Luketich. He will need any scans or test results sent in advance. The folks in his office will help you coordinate the information exchange and consultation.
    ______________________________________________________________________
    His contact information is:

    James D. Luketich, MD
    University of Pittsburgh Physicians
    Department of Cardiothoracic Surgery, Division of Thoracic Surgery
    UPMC Cancer Centers

    Office Address(es):
    UPMC Presbyterian, Digestive Disorders Center
    200 Lothrop Street
    Pittsburgh, PA 15213
    Phone: (412) 647-7555

    Here is the reference to the web site that contains his contact information including how to schedule appointments:

    http://findadoc.upmc.com/PhysicianBioQuery.aspx?ID=1604

    _______________________________________________________________________________________________


    You do not include any staging information for your husband. It sounds like he may have had a CT scan to rule out metastasis to other organs. To complete his staging he should have an endoscopic ultrasound (EUS) to define depth of penetration of the tumor into the esophagus and potential nodal involvement.

    _______________________________________________________________________________________________

    Endoscopic Ultrasound (EUS) combines endoscopy and ultrasound in order to obtain images and information about the digestive tract and the surrounding tissue and organs. Endoscopy refers to the procedure of inserting a long flexible tube via the mouth to visualize the digestive tract.

    http://www.medicinenet.com/endoscopic_ultrasound/article.htm
    ______________________________________________________________________________________________


    Assuming your husband is Staged at Stage 3 or below he would be a candidate for trimodality therapy consisting of chemotherapy, radiation therapy, and surgery.

    http://www.asco.org/ascov2/Meetings/Abstracts?&vmview=abst_detail_view&confID=41&abstractID=285

    ________________________________________________________________________________________________


    As you can see below, I am a cancer survivor. My surgery was an Ivor Lewis approach. I was not aware at the time I had my surgery that a minimally invasive approach was available. My in hospital time was 12 days in part due to an infection in both surgical incisions. I would recommend you investigate the availability of a minimally invasive approach.

    I am also including a reference for the Hillman Cancer Center at UMPC that lists a number of helpful resources for publications relating to esophageal cancer and support activities.
    _______________________________________________________________________________________________

    http://www.upmccancercenters.com/portal_headneck/resources.cfm
    _______________________________________________________________________________________________

    I hope this information is helpful in finding your husband quality treatment. Curative surgery for esophageal cancer is a MAJOR surgery and I think your best chance at a positive outcome is to travel to a major cancer treatment center with expertise in the procedure and management of after care.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    3/14/2011 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!

    Thanks for taking the time
    Hi Paul,
    Thanks so much for replying to my post and all the information that you have included.
    Rob has had an endoscopy which was the initial diagnosis of EC and then a scan, where he
    sat in a chair and a camera moved around him.I don't know what type of scan that was. Sorry.
    The surgeon says that that scan has shown an 8cm tumour and a suspicious looking ganglion.
    That is the reasoning behind chemo first and an op afterwards.
    More than that I don't know.
    The problem that I have is that the train of thought here is that if we mention that we would like a second opinion then all the treatment will stop. I would need to ask at least for the scan on a dvd so that I can send it to UPMC or the UK with all the biopsy and endoscopy reports.
    My husband and my daughter don't want me to do that incase it halts my husband's treatment.
    I am still going to try and change my husbands mind as I really do think it's the best option for him.
    Thanks again Paul and i'm so glad that you are a success story. We need as many of those as possible to hang on to.
    Prayers and hugs Marci x
  • mardigras
    mardigras Member Posts: 215 Member
    #7
    chemosmoker said:

    Run away?
    Marci,
    From the sound of your post, I would NOT let that doctor operate on my foot, much less handle something with such a HUGE mortality rate for the surgery alone, much less the cancer itself, as EC surgery.

    I am stage IV so I cannot benefit from any surgery, but from reading the boards and talking to survivors for the last four months, I would heed the advice you are reading in the post from Paul, Niki and others, and DO NOT do any surgery where they don't do this exact procedure(s) (IL or MIE or THE) that many times in a WEEK!!!!!

    God bless and good luck. DO NOT allow anything you do not feel 110% comfortable with.
    There is NO room for error with this type of cancer. I will pray for you both.

    -Eric

    Hello Eric
    Thank you for the advice, it is really appreciated.
    I'm so sorry that surgery is not an option for you and hope that the treatment you receive will give you a reasonable, if not good quality of life. Also that your treatment is not too uncomfortable for you.
    We are new to this and in fairness I have to say that the surgeon fitted us in on a fast track, so we were grateful for that at least. A lot of the diagnosis I think was lost in translation as our spanish is not perfect.
    I was telling Paul that the consensus of opinion here is that as soon as second opinion is mentioned, then treatment would stop.
    Rob is very worried about that as his tumour is very large and he has already lost so much weight. I know he feels that time is of the essence.
    For my part I still want a second and third opinion if I feel it's necessary. It's an uphill battle.

    Thanks again Eric and god bless you.
    Hugs Marci x
  • dodger21
    dodger21 Member Posts: 85 Member
    #8
    mardigras said:

    Hello Eric
    Thank you for the advice, it is really appreciated.
    I'm so sorry that surgery is not an option for you and hope that the treatment you receive will give you a reasonable, if not good quality of life. Also that your treatment is not too uncomfortable for you.
    We are new to this and in fairness I have to say that the surgeon fitted us in on a fast track, so we were grateful for that at least. A lot of the diagnosis I think was lost in translation as our spanish is not perfect.
    I was telling Paul that the consensus of opinion here is that as soon as second opinion is mentioned, then treatment would stop.
    Rob is very worried about that as his tumour is very large and he has already lost so much weight. I know he feels that time is of the essence.
    For my part I still want a second and third opinion if I feel it's necessary. It's an uphill battle.

    Thanks again Eric and god bless you.
    Hugs Marci x

    Ganglion
    Marci,
    sorry to see you on this site.
    In relation to the ganglion, did the dr biopsy it when he did the endoscopy and biopsied the tumour? The reason being, I tore the ligaments in my wrist in 2001 playing sport but kept playing in pain for 9 months before seeing a doctor. A ganglion cyst had formed between the torn ligaments to make the wrist work. The ganglion cyst was removed and biopsied and found to be negative and nerve cells formed together to repair the injury naturally.
    However if your ganglion is very close to the esophageal tumour you would need to double check that it is a ganglion cyst and not more tumour growing. If your doctor said they did biopsy it and it was negative, in the position it is in it would still need to be removed as it will have an attraction (for want of a better word) to the tumour cells.
    I would definitely get a second opinion and ring Dr Luketich as I wouldn't want to know 6 months down the track that the ganglion cyst now also has cancer cells in it.
    But first recheck with your doctor and specifically ask if they biopsied the ganglion during the endoscopy, as well as the tumour.
    (I'm not from the US but Australia and I would still ring Dr Luketich if I was in your position in that country. Don't worry about offending the medical fraternity there. Your husbands health comes first)
    Danielle
  • mardigras
    mardigras Member Posts: 215 Member
    #9
    dodger21 said:

    Ganglion
    Marci,
    sorry to see you on this site.
    In relation to the ganglion, did the dr biopsy it when he did the endoscopy and biopsied the tumour? The reason being, I tore the ligaments in my wrist in 2001 playing sport but kept playing in pain for 9 months before seeing a doctor. A ganglion cyst had formed between the torn ligaments to make the wrist work. The ganglion cyst was removed and biopsied and found to be negative and nerve cells formed together to repair the injury naturally.
    However if your ganglion is very close to the esophageal tumour you would need to double check that it is a ganglion cyst and not more tumour growing. If your doctor said they did biopsy it and it was negative, in the position it is in it would still need to be removed as it will have an attraction (for want of a better word) to the tumour cells.
    I would definitely get a second opinion and ring Dr Luketich as I wouldn't want to know 6 months down the track that the ganglion cyst now also has cancer cells in it.
    But first recheck with your doctor and specifically ask if they biopsied the ganglion during the endoscopy, as well as the tumour.
    (I'm not from the US but Australia and I would still ring Dr Luketich if I was in your position in that country. Don't worry about offending the medical fraternity there. Your husbands health comes first)
    Danielle

    Ganglion
    Thanks for taking the time to reply Danielle.
    The ganglion has not been biopsied to my knowledge.
    The biopsy was done when we had a private endoscopy done and the tumour was first diagnosed three weeks ago.
    I am trying to speak to a surgeon at home in the uk this morning and waiting for the time difference to catch up so that I can ring the States. I stayed up all night thinking that Pittsburg was 5 hours ahead of us, only to find it was five hours behind, so I will try again at 1pm my time 8am their time.
    I still feel really worried about Rob having his surgery here, even though the climate is more conduicive to recovery.
    Thanks again Danielle for the invaluable advice.
    Hugs and God Bless
    Marci x
  • dodger21
    dodger21 Member Posts: 85 Member
    #10
    mardigras said:

    Ganglion
    Thanks for taking the time to reply Danielle.
    The ganglion has not been biopsied to my knowledge.
    The biopsy was done when we had a private endoscopy done and the tumour was first diagnosed three weeks ago.
    I am trying to speak to a surgeon at home in the uk this morning and waiting for the time difference to catch up so that I can ring the States. I stayed up all night thinking that Pittsburg was 5 hours ahead of us, only to find it was five hours behind, so I will try again at 1pm my time 8am their time.
    I still feel really worried about Rob having his surgery here, even though the climate is more conduicive to recovery.
    Thanks again Danielle for the invaluable advice.
    Hugs and God Bless
    Marci x

    Biopsy
    Marci,
    you certainly must have been up all night! I'm normally the only person on line at this time, being in Australia!!

    From my perspective, I would have serious concerns if the dr didn't biopsy the ganglion during the endoscopy. It would concern me as to how detailed and thorough he would be for the rest of your hubbys treatments.
    When I first got diagnosed I had my endoscopy for other reasons and was found by accident. My dr biopsied the oesophagus but, while doing the scope, still did biopsies on the upper intestine which was why I was having the endoscopy. You cannot properly diagnose a ganglion until you have biopsied it to confirm the cells are not cancerous but made of nerves. If the ganglion is near the oesophagus it wouldn't have been a problem to take a biopsy of it while your husband was under sedation. I know for certain my doctor would have. If my doctor didn't do that, it would make me wonder whether they would be the right doctor for me.
    I don't wish to alarm you or upset you too much but you cannot confirm a ganglion on sight alone. The cells definitely need to be biopsied, especially being so close to the tumour.
    You are definitely doing the right thing by making that phone call in a couple of hours. Write a list down of questions you want to ask or questions from translation problems you had previously, and check them off as they are answered.
    Feel free to then come back here and ask any question under the sun. There is a stack load of knowledge and experience on this forum.
    Rest assured, you are doing the right thing.
    Danielle
  • NikiMo
    NikiMo Member Posts: 342
    #11
    mardigras said:

    Newly diagnosed
    Hi Niki,
    Thank you taking the time to reply, it really is appreciated.
    My husband has not been staged as I understand it. They do things a bit differently in Spain.
    Firstly, I don't really know what a ganglion is except that on wikipedia it says a tissue mass of nerve cells.
    The surgeon here has said that they will do chemo first to shrink the tumour at the base of Rob's esophagus. The tumour is large (8cms), then he will operate.
    We don't have family in the States, but we do have some savings. If it is enough then I
    can't think of a better way to spend it.
    I am going to try and contact UPMC and see if I can get this information on costs. I know it will be eye wateringly expensive.
    Our home is in the UK, but I don't know how to find out who would have done several surgeries a week there.
    Thanks again for the advice
    Hugs and prayers Marci x

    UK doctors
    Marci,

    I am not sure how your health insurance works in EU, but if you are from the UK can you go back there for treatment? That may be easier on you and I am sure there are competent surgeons and oncologists in the UK. Not everyone in the US goes to Dr. L, my husband went to John Hopkins for surgery and we are very happy. My only point in telling you this is that you know there are other surgeons throughout the world who also do this type of surgery. Do you have facebook? If so I am putting in an address for you to follow, there are a number of folks from the UK and you can ask who the experts are there.

    I truly hope this helps you!!

    http://www.facebook.com/groups/40251501786/

    If you aren't on facebook or need me to post the question out to that group about help in the UK let me know.

    Niki
  • carolyn45
    carolyn45 Member Posts: 100
    #12
    dodger21 said:

    Biopsy
    Marci,
    you certainly must have been up all night! I'm normally the only person on line at this time, being in Australia!!

    From my perspective, I would have serious concerns if the dr didn't biopsy the ganglion during the endoscopy. It would concern me as to how detailed and thorough he would be for the rest of your hubbys treatments.
    When I first got diagnosed I had my endoscopy for other reasons and was found by accident. My dr biopsied the oesophagus but, while doing the scope, still did biopsies on the upper intestine which was why I was having the endoscopy. You cannot properly diagnose a ganglion until you have biopsied it to confirm the cells are not cancerous but made of nerves. If the ganglion is near the oesophagus it wouldn't have been a problem to take a biopsy of it while your husband was under sedation. I know for certain my doctor would have. If my doctor didn't do that, it would make me wonder whether they would be the right doctor for me.
    I don't wish to alarm you or upset you too much but you cannot confirm a ganglion on sight alone. The cells definitely need to be biopsied, especially being so close to the tumour.
    You are definitely doing the right thing by making that phone call in a couple of hours. Write a list down of questions you want to ask or questions from translation problems you had previously, and check them off as they are answered.
    Feel free to then come back here and ask any question under the sun. There is a stack load of knowledge and experience on this forum.
    Rest assured, you are doing the right thing.
    Danielle

    The UK acts very quickly with cancer.
    I am an American, but I live in the northwest Highlands of Scotland. We have friends and acquaintances all over the UK who have had extremely quick action taken when cancer is suspected, let alone diagnosed. You can't afford to have information "lost in translation." The NHS is extremely competent, and you need to know all of the information that the amazing people on this board are asking about. Please, don't worry about offending anyone! Your husband's life is at stake, and you need to make decisions based on knowledge and trust. All the best to you on this journey.
  • mardigras
    mardigras Member Posts: 215 Member
    #13
    dodger21 said:

    Biopsy
    Marci,
    you certainly must have been up all night! I'm normally the only person on line at this time, being in Australia!!

    From my perspective, I would have serious concerns if the dr didn't biopsy the ganglion during the endoscopy. It would concern me as to how detailed and thorough he would be for the rest of your hubbys treatments.
    When I first got diagnosed I had my endoscopy for other reasons and was found by accident. My dr biopsied the oesophagus but, while doing the scope, still did biopsies on the upper intestine which was why I was having the endoscopy. You cannot properly diagnose a ganglion until you have biopsied it to confirm the cells are not cancerous but made of nerves. If the ganglion is near the oesophagus it wouldn't have been a problem to take a biopsy of it while your husband was under sedation. I know for certain my doctor would have. If my doctor didn't do that, it would make me wonder whether they would be the right doctor for me.
    I don't wish to alarm you or upset you too much but you cannot confirm a ganglion on sight alone. The cells definitely need to be biopsied, especially being so close to the tumour.
    You are definitely doing the right thing by making that phone call in a couple of hours. Write a list down of questions you want to ask or questions from translation problems you had previously, and check them off as they are answered.
    Feel free to then come back here and ask any question under the sun. There is a stack load of knowledge and experience on this forum.
    Rest assured, you are doing the right thing.
    Danielle

    Biopsy
    Thank you for replying Danielle.
    In fairness to the surgeon, he did not do the biopsy.
    We had a private endoscopy done and that was how the tumour was diagnosed initially.
    We then went to the hospital for a scan and the surgeon said that he scan showed a ganglion near the tumour that looked suspicious.
    Having said that he has not mentioned another biopsy to check it.
    We are going to the oncologist to discuss treatment with Chemo on Thursday. It was Friday, but has been brought forward by a day. I will ask the Onco about it.
    The surgeon has said that Rob needs chemo to shrink the tumour (8cms, a large one) and to kill off any cells before surgery.
    I am a little disappointed because Dr Luketich's office said they would call me back 12 hours ago and I haven't had a call.
    I also put a call in to a respected consultant in the UK (our home) and he hasn't returned my call either.
    Fingers crossed that they will.
    What a huge waiting game this disease is!
    Thanks again for your support and help. I really don't know wher I would be without you all.
    Thank you and God Bless you
    Marci X
  • mardigras
    mardigras Member Posts: 215 Member
    #14
    carolyn45 said:

    The UK acts very quickly with cancer.
    I am an American, but I live in the northwest Highlands of Scotland. We have friends and acquaintances all over the UK who have had extremely quick action taken when cancer is suspected, let alone diagnosed. You can't afford to have information "lost in translation." The NHS is extremely competent, and you need to know all of the information that the amazing people on this board are asking about. Please, don't worry about offending anyone! Your husband's life is at stake, and you need to make decisions based on knowledge and trust. All the best to you on this journey.

    Thank you Carolyn
    Thanks for taking the time to reply to my posts.
    I am still thinking that returning to the uk might be a better option for my husband, but it is his cancer and he feels that there is an urgency for at least some Chemo to shrink his very large tumour before he plays a waiting game in the uk.
    I have to go along with his wishes, but I am hoping bthat once we know the treatment plan, there may be a break in the treatment to allow us to come back to the uk for a second opinion. I really do not want the op done here in Gran Canaria if my husband has a better chance in the uk or in the USA.
    I am waiting for a call back from a cancer team in Pittsburg and also a respected surgeon in the UK.
    Thank you for your good wishes.
    Bless you
    Marci x
  • Unknown
    Unknown
    #15
    mardigras said:

    Biopsy
    Thank you for replying Danielle.
    In fairness to the surgeon, he did not do the biopsy.
    We had a private endoscopy done and that was how the tumour was diagnosed initially.
    We then went to the hospital for a scan and the surgeon said that he scan showed a ganglion near the tumour that looked suspicious.
    Having said that he has not mentioned another biopsy to check it.
    We are going to the oncologist to discuss treatment with Chemo on Thursday. It was Friday, but has been brought forward by a day. I will ask the Onco about it.
    The surgeon has said that Rob needs chemo to shrink the tumour (8cms, a large one) and to kill off any cells before surgery.
    I am a little disappointed because Dr Luketich's office said they would call me back 12 hours ago and I haven't had a call.
    I also put a call in to a respected consultant in the UK (our home) and he hasn't returned my call either.
    Fingers crossed that they will.
    What a huge waiting game this disease is!
    Thanks again for your support and help. I really don't know wher I would be without you all.
    Thank you and God Bless you
    Marci X

    This comment has been removed by the Moderator
  • mardigras
    mardigras Member Posts: 215 Member
    #16
    unknown said:

    This comment has been removed by the Moderator

    Thank you Sherri
    Thanks so much Sherri for replying to my posts.
    As you suggested, I have just e-mailed Dr Luketich's team.
    Do you think that the chemo should not occur either before staging?
    The surgeon did not say anything about staging, so I am not sure
    that things are done the same way here.
    Unfortunately the time for Rob's treatment has already been delayed.
    We have been waiting for some tests since February, when Rob went to
    the doctor here with a pain when he ate something. Eventually we paid
    for an ultrasound which was clear and then paid again for an endoscopy
    and biopsy. If we hadn't we would not have foud out that Rob had this
    dreadful disease.
    This has put us back several months already.
    Our lives have been turned upside down and I was feeling hopeless until
    I stumbled in here.
    Thank you again and God Bless you.
    Marci X
  • mardigras
    mardigras Member Posts: 215 Member
    #17
    unknown said:

    This comment has been removed by the Moderator

    Had a reply within minutes of my e-mail
    Hi Sherri,
    I just wanted to let you know that Dr Luketich replied to my e-mail within minutes.
    How right you were to suggest e-mail. Thanks.
    I am hoping to speak to him tomorrow.
    God Bless you
    Marci X
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #18
    unknown said:

    This comment has been removed by the Moderator

    Nice to See You
    Hi Sherri!
    I just wanted to tell you hello and that it is so nice to see you posting! I love your profile pic, you look very relaxed and satisfied! May God continue to bless those of us who are continuing to grieve and mourn the loss of our loved ones.
    Tina in Va
  • JimboC
    JimboC Member Posts: 264
    #19
    I am so sorry to hear about
    I am so sorry to hear about your husband's diagnosis. I did want to give you a little glimmer of hope. Like your husband, I was diagnosed with an 8cm tumor at the bottom of the esophagus. I went through 3 rounds of ECF chemo and when I had surgery, the tumor had been reduced to .5cm. My understanding is that my results aren't typical especially with chemo alone but they do show what can happen.

    Best of luck!
  • mardigras
    mardigras Member Posts: 215 Member
    #20
    JimboC said:

    I am so sorry to hear about
    I am so sorry to hear about your husband's diagnosis. I did want to give you a little glimmer of hope. Like your husband, I was diagnosed with an 8cm tumor at the bottom of the esophagus. I went through 3 rounds of ECF chemo and when I had surgery, the tumor had been reduced to .5cm. My understanding is that my results aren't typical especially with chemo alone but they do show what can happen.

    Best of luck!

    Hello, it's nice to meet you
    Hello Jim
    Today was a better day!
    Thanks for the heartening news and the glimmer of hope.
    Rob had his first visit with the onco today and he confirmed that there is no spread anywhere else. He will start chemo soon.
    Thanks also for your good wishes
    Bless you
    Marci

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