Help Wanted!

Proactive Daughter
Proactive Daughter Member Posts: 55
in Esophageal Cancer #1
Hi Everyone,

Before I begin, just want to welcome the newcomers. Although the beast we battle is a fierce one, we are here for eachother. I can't offer and advice, just that I read all of your posts and I pray for all of you here. I am new here as well. My father was just diagnosed on December 1st, and everyone has welcomed me with open arms and tried to answer my questions.

Speaking of which, here is another one.

I don't attend my dad's Doctor's appointments yet, my step mother does. She seems to get the information all mixed up when telling us on how the appointment went, so I am always confused. Just the other day I asked her what EC does my dad have? Is it adenocarsinoma or squamous cell carsinoma? She had no idea what I was asking. I also asked her if my dad was staged again (originally he was stage II, but that was before his surgery. During surgery, the surgeon said that the cancer has spread to the bronchial wall, and that he couldn't remove it all, and that it is likely to return). I see all of you have a diagnosis 'code' such as T2M1N0, and I asked her if my dad had a staging 'code' (excuse my terminology, as I am learning). She said that the Oncologist has never given them one.

They have only met with the Oncologust one time, and that was on Jan. 11th. It was then that he reviewed my dad's scans and said that there was some suspicious activity in the hip area that he was concerned about, and wanted another MRI to compare scans to see if there has been any change. My dad had polio as a child, so the Thoracic Surgeon (who staged my dad, and did the surgery before even meeting with an Oncologist) said that the activity in the hip didn't concern him, and that it could be the result of his polio as a child, or even a past fall/injury. My dad just had another MRI this past friday and will review the results with the Onc. this coming wednesday. From what my step mother told us, the onc. told them that if the cancer IS in the hip, he can only do radiation to keep him comfortable, or a 'combo'...not sure what that is. If it ISN'T cancer in the hip, then my dad can start chemo and radiation and begin the fight against this relentless beast.

My question is, where do you think my dad is staged at given the information I have given you? OH, I should also mention that the surgeon removed 7 cancerous lymph nodes as well.

Secondly, doesn't seem a little off that if the cancer has spread to the hip, that he can't fight it with chemo and radiation? Don't bone cancer patients have a chance at fighting and possibly surviving? I did write this out on the Bone Cancer board, but no one answered. Anyways, I spoke with my dad and asked him if I could attend the appointments with them. I am concerned that my step mom is to frazzled when attending to retain all the correct information.

Okay, and one more thing that really upset me that I need your thoughts on. My sister and I told my dad that he really should get a second opinion. My stepmom wasn't against it, but didn't seem all that interested in pursuing the idea. They attended a support group through our local cancer centre and mentioned to the support worker that they were considering getting a second opinion and the support worker told them that their assigned oncologist would be "appaulled" at the idea. IS THAT NOT CRAZY? I hate to tell my step mom that I don't believe her, but how could an Oncologist be so arrogant to think that my dad should base his life on one person's opinion?

Anyways, I will through it over to you. What do you think?

Oh, and one last question. My dad is struggling with phlem. Yes, phlem...he coughs up so much phlem now that he is exhausting himself, and he says it's setting him back in his recovery. He is on jevity at the moment for nutrition (the feeding bag over night). He is also avoiding dairy at the moment to see if that helps...but nothing really has helped all that much.

So please give me advice on:
1. What you think he would be staged at, just your opinion
2. What the staging code would be, if you had to guess
3. If you think my stepmom heard wrong that if it is in the hip bone, he will just be kept comfortable until he passes
4. what you think about the ONC being appaulled at a 2nd opinion
5. what to do about phlem, did you encounter this problem.

Thanks gang. Again I know my information is incredibley vague and my terminology is terrible, but any input you have would be great. AND YES, I do plan on attending these appointments in the future so that I am more informed on my dads prognosis. Any thoughts or opinions are welcome,

Comments

  • chemosmoker
    chemosmoker Member Posts: 501
    #2
    LOTS of issues.
    Proactive daughter,
    First of all, ANYONE who says a 2nd opinion is not the best idea and even a 3rd sometimes is NOT in a position to be giving advice to newcomers IMHO. So there's that.

    Now I have nothing on the Cleveland Clinic so I leave that to those that do.

    As to the Phlegm, I have that, it has come and gone, and it is a bear. I believe the throat tries to form a healing balm in some way and coat or be there for lubrication. I keep a little trash can with a thick liner just for this problem, and tissues. I don't know what to expect but I am glad I can swallow okay still as I understand THIS is what causes aspiration and 'drowning' in one's sleep when you cannot swallow during sleep. If that makes sense?

    For one of yourselves to not be going and taking pre-written notes and questions, and making/taking notes is foolish. Step-mom means as well as dad, but that is like sending the kindegardnerr to their own parent/teacher conference and then expecting to get all the facts and figures and understand the situation in class!!

    Advice on:
    1. What you think he would be staged at, just your opinion: I am stage IVb terminal. He may or may not be, it ALL depends on the hip and how far out the spread is to the nodes, and much more.
    2. What the staging code would be, if you had to guess: THIS is not a guess thing, this is a very medical process depending on all of the above information. It MUST be done by the oncology TEAM, and be very accurate. THAT is like asking me to guess what type of cancer he has by looking at his chest.
    3. If you think my stepmom heard wrong that if it is in the hip bone, he will just be kept comfortable until he passes: That is probably the case, just like me. It would be stage IVb palliative care only.
    4. what you think about the ONC being appaulled at a 2nd opinion: Oncologists (at least all the good ones) WELCOME second and third opinions and will TELL you that! They like the blame spread around I believe, and at LEAST want you to get the very BEST medical advice and not make any mistakes in this area. I have YET to see otherwise.
    5. what to do about phlegm, did you encounter this problem. (Already answered).

    So, I hope SOME of this helps. They gave me 4-6 months in June. I chose NO chemo, no radiation, just keep me pain free and lets see what happens. Sadly, most of those who I met along the way who chose chemo and so on are gone, and I am doing VERY well with just pain management.

    I WILL say, if you plan to do ANY treatment, get a feeding tube NOW. NOW.
    I do not have one. But it is a must to survive this one for treatment from what I have seen.

    Glo bless and keep the information coming. We are ALL here for you.

    Eric
  • Proactive Daughter
    Proactive Daughter Member Posts: 55
    #3
    chemosmoker said:

    LOTS of issues.
    Proactive daughter,
    First of all, ANYONE who says a 2nd opinion is not the best idea and even a 3rd sometimes is NOT in a position to be giving advice to newcomers IMHO. So there's that.

    Now I have nothing on the Cleveland Clinic so I leave that to those that do.

    As to the Phlegm, I have that, it has come and gone, and it is a bear. I believe the throat tries to form a healing balm in some way and coat or be there for lubrication. I keep a little trash can with a thick liner just for this problem, and tissues. I don't know what to expect but I am glad I can swallow okay still as I understand THIS is what causes aspiration and 'drowning' in one's sleep when you cannot swallow during sleep. If that makes sense?

    For one of yourselves to not be going and taking pre-written notes and questions, and making/taking notes is foolish. Step-mom means as well as dad, but that is like sending the kindegardnerr to their own parent/teacher conference and then expecting to get all the facts and figures and understand the situation in class!!

    Advice on:
    1. What you think he would be staged at, just your opinion: I am stage IVb terminal. He may or may not be, it ALL depends on the hip and how far out the spread is to the nodes, and much more.
    2. What the staging code would be, if you had to guess: THIS is not a guess thing, this is a very medical process depending on all of the above information. It MUST be done by the oncology TEAM, and be very accurate. THAT is like asking me to guess what type of cancer he has by looking at his chest.
    3. If you think my stepmom heard wrong that if it is in the hip bone, he will just be kept comfortable until he passes: That is probably the case, just like me. It would be stage IVb palliative care only.
    4. what you think about the ONC being appaulled at a 2nd opinion: Oncologists (at least all the good ones) WELCOME second and third opinions and will TELL you that! They like the blame spread around I believe, and at LEAST want you to get the very BEST medical advice and not make any mistakes in this area. I have YET to see otherwise.
    5. what to do about phlegm, did you encounter this problem. (Already answered).

    So, I hope SOME of this helps. They gave me 4-6 months in June. I chose NO chemo, no radiation, just keep me pain free and lets see what happens. Sadly, most of those who I met along the way who chose chemo and so on are gone, and I am doing VERY well with just pain management.

    I WILL say, if you plan to do ANY treatment, get a feeding tube NOW. NOW.
    I do not have one. But it is a must to survive this one for treatment from what I have seen.

    Glo bless and keep the information coming. We are ALL here for you.

    Eric

    Thanks Eric
    Hi Eric, thanks so much for reading my complex rant full of questions. I couldn't agree more about the Oncologist being appaulled about a 2nd opinion. When my stepmother told me that, I couldn't help but get upset. I think she must have heard wrong, or this oncologist has a chip on his shoulder. BELIEVE ME, I am not giving advice to anyone, including our newcomers to NOT get a second opinion. When I first came here and told my dad's story, that was one of the first pieces of advice I was given. The more opinions, the better.

    In regards to my father's staging, I'm not asking anyone to diagnose him...but I am coming into this blind, and am trying to research where my dad might be at given the information I have. That's all. I'm in a very tough position because my parents seem a little old school when it comes to doing any research or even bringing another family member to their appointments. They think they have it all under control, but when I come on here...it's very obvious that they aren't asking key questions, and they aren't digging to learn more. It's like they just listen and leave. It's very frustrating. When I told them that I have been doing some reading some very inspirational survival stories on the internet, they both told me not to go on the internet, that it will just scare me and mislead me. They aren't old, they are just not up to date with technology and they don't understand that they can really learn alot.

    As I mentioned before, he is on a feeding tube. He has the j-tube and feeds over night. He has a nutritionist as well as a physiotherapist that assist him at home, and they are trying to get to the root of the phlem problem. He is aware it's normal to a degree to get some phlem, but like I mentioned above, he's hacking all day to the point of physical exhaustion. Hopefully it slows down for him so that he can gain his strength and prepare for a fight.

    Eric, I have been reading your posts. Your story is inspirational. You make me realize that everyday is a blessing, and that we should be grateful for each day. I pray that you continue to live comfortably and pain free. Esophegeal cancer is awful. I never heard of it before my dad's diagnosis.

    Thanks for your words of wisdom, all I can do is keep offering to join them in the appointments. The more ears the better. I have also encouraged my step mother to take notes, but she said that she won't. I do feel like I'm sending a kindergarten student to a parent/teacher interview, but if they say they have it under control, what am I to do?

    Okay, that's all from me for now. Thanks so much Eric. I can imagine how frustrating it is to hear how uninformed I am, as it's extremely frustrating being uninformed, but hopefully I return with valuable information,

    Thanks for listening,

    Jennifer
  • hdwchisholm
    hdwchisholm Member Posts: 20
    #4
    Proactive Daughter said:

    Thanks Eric
    Hi Eric, thanks so much for reading my complex rant full of questions. I couldn't agree more about the Oncologist being appaulled about a 2nd opinion. When my stepmother told me that, I couldn't help but get upset. I think she must have heard wrong, or this oncologist has a chip on his shoulder. BELIEVE ME, I am not giving advice to anyone, including our newcomers to NOT get a second opinion. When I first came here and told my dad's story, that was one of the first pieces of advice I was given. The more opinions, the better.

    In regards to my father's staging, I'm not asking anyone to diagnose him...but I am coming into this blind, and am trying to research where my dad might be at given the information I have. That's all. I'm in a very tough position because my parents seem a little old school when it comes to doing any research or even bringing another family member to their appointments. They think they have it all under control, but when I come on here...it's very obvious that they aren't asking key questions, and they aren't digging to learn more. It's like they just listen and leave. It's very frustrating. When I told them that I have been doing some reading some very inspirational survival stories on the internet, they both told me not to go on the internet, that it will just scare me and mislead me. They aren't old, they are just not up to date with technology and they don't understand that they can really learn alot.

    As I mentioned before, he is on a feeding tube. He has the j-tube and feeds over night. He has a nutritionist as well as a physiotherapist that assist him at home, and they are trying to get to the root of the phlem problem. He is aware it's normal to a degree to get some phlem, but like I mentioned above, he's hacking all day to the point of physical exhaustion. Hopefully it slows down for him so that he can gain his strength and prepare for a fight.

    Eric, I have been reading your posts. Your story is inspirational. You make me realize that everyday is a blessing, and that we should be grateful for each day. I pray that you continue to live comfortably and pain free. Esophegeal cancer is awful. I never heard of it before my dad's diagnosis.

    Thanks for your words of wisdom, all I can do is keep offering to join them in the appointments. The more ears the better. I have also encouraged my step mother to take notes, but she said that she won't. I do feel like I'm sending a kindergarten student to a parent/teacher interview, but if they say they have it under control, what am I to do?

    Okay, that's all from me for now. Thanks so much Eric. I can imagine how frustrating it is to hear how uninformed I am, as it's extremely frustrating being uninformed, but hopefully I return with valuable information,

    Thanks for listening,

    Jennifer

    2nd opinions
    Jennifer, I am throat cancer survivor, diagnosed March 2011, and was lucky to get it early. I had robotic surgery, 6 weeks radiation, and two doses of chemo. I was comfortable with my team of ENT surgeon, oncologist, and chemo doctors at University Hospitals but I wanted to make sure and got a second opinion at the Cleveland CLinic. I preferred the specific rifle approach at UH vs the shotgun approach at the Clinic. I know a story of another person who had colon or prostate cancer and was told by both UH and the Clinic to get his affairs in order as they could not do anything. He and his wife did not give up but did not know where to go. The wife told the story to an out of town friend who knew someone at Sloan Kettering. An appointment was arranged. A doctor at SK was more experienced in certain recent advances in this specific type of cancer and was able to put together the appropriate treatment plan.
    Always get 2nd or 3rd opinions. Ask questions. If you don't understand, ask again. Find out how experienced they are and how many operations they have performed. Ask the doctor who would do the surgery if this was your child or parent. Feel comfortable with doctors and their teams.Also do not hide what is happening. It is amazing how friends want to help. You never know when a friend of a friend can open doors for you. Homer
  • Proactive Daughter
    Proactive Daughter Member Posts: 55
    #5
    hdwchisholm said:

    2nd opinions
    Jennifer, I am throat cancer survivor, diagnosed March 2011, and was lucky to get it early. I had robotic surgery, 6 weeks radiation, and two doses of chemo. I was comfortable with my team of ENT surgeon, oncologist, and chemo doctors at University Hospitals but I wanted to make sure and got a second opinion at the Cleveland CLinic. I preferred the specific rifle approach at UH vs the shotgun approach at the Clinic. I know a story of another person who had colon or prostate cancer and was told by both UH and the Clinic to get his affairs in order as they could not do anything. He and his wife did not give up but did not know where to go. The wife told the story to an out of town friend who knew someone at Sloan Kettering. An appointment was arranged. A doctor at SK was more experienced in certain recent advances in this specific type of cancer and was able to put together the appropriate treatment plan.
    Always get 2nd or 3rd opinions. Ask questions. If you don't understand, ask again. Find out how experienced they are and how many operations they have performed. Ask the doctor who would do the surgery if this was your child or parent. Feel comfortable with doctors and their teams.Also do not hide what is happening. It is amazing how friends want to help. You never know when a friend of a friend can open doors for you. Homer

    Thank You Homer
    Thank you Homer,

    I couldn't agree more. I find it quite shocking that my parents are afraid of insulting their Oncologist by requesting a 2nd opinion. I may have to just have a sensative chat with them about this. I don't like the idea of throwing all your eggs in one basket.

    Thanks for your story Homer,
    Sincerely,

    Jennifer

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