Need advice Quick

THMoore

My local ENT wants to remove my swollen lymph node this tuesday and have a biopsy performed.  I received a call from MD Anderson team, asking me to wait and let them decide.  What is recommended?  I hate to leave it in for 3 more weeks before I can get to MD Anderson.

 

Thanks

wbcgaruss

I Think I Would

Run it by your local ENT and explain what MD Anderson wants and get his opinion. He should be willing to work with you for the best outcome. I would add if you are going to get all your treatments at MD Anderson they may want to treat you from start to finish including the lymph node removal and biopsy. If the cancer is encapsulated inside the lymph node that is a good situation so check with your ENT to see if it is. If it starts escaping outside the lymph node then it starts invading tissue and maybe that is why your ENT wants to remove it. Your ENT should be able to communicate with MD Anderson also and help decide your best move. I hope this help but I don't like telling folks what to do in a situation like this. It can be a tough decision but your ENT's opinion and working with MD Anderson can certainly take a load off-Take Care-God Bless

SuzJ

Lymph Nodes

Why? What did the report say?

 

After Chemo and Rads, I had some lymph nodes that we wern't sure about. I had a choice, Take them out, or the 'wait and see approach'

I don't do well with an axe hanging over my head, so I was decided,  - Take them out!

 

Your ENT has reasons for his advice, ask him to explain in laymans terms, explain you do not have a medical degree, and you'd like it in small words.

THMoore

SuzJ said:

Lymph Nodes

Why? What did the report say?

 

After Chemo and Rads, I had some lymph nodes that we wern't sure about. I had a choice, Take them out, or the 'wait and see approach'

I don't do well with an axe hanging over my head, so I was decided,  - Take them out!

 

Your ENT has reasons for his advice, ask him to explain in laymans terms, explain you do not have a medical degree, and you'd like it in small words.

Suz,

Suz,

The report came back saying some nontypical cells were found but not sure what is was.  Recommended removal.  The ENT originally told me it was my paotid gland.  Then he just said, Not sure yet want to remove the node tuesday.  He wouldnt explain anything.  Just in and out.  MD Anderson called and said the lead doctor assigned said to not remove the node and wait till I see them.  My local ENT does not discuss or expain, he just says hes the lead ENT, he does the surgery, basically he is in and out in 5 minutes. 

THMoore

wbcgaruss said:

I Think I Would

Run it by your local ENT and explain what MD Anderson wants and get his opinion. He should be willing to work with you for the best outcome. I would add if you are going to get all your treatments at MD Anderson they may want to treat you from start to finish including the lymph node removal and biopsy. If the cancer is encapsulated inside the lymph node that is a good situation so check with your ENT to see if it is. If it starts escaping outside the lymph node then it starts invading tissue and maybe that is why your ENT wants to remove it. Your ENT should be able to communicate with MD Anderson also and help decide your best move. I hope this help but I don't like telling folks what to do in a situation like this. It can be a tough decision but your ENT's opinion and working with MD Anderson can certainly take a load off-Take Care-God Bless

He does not discuss or

He does not discuss or explain.  He said, the surgery would take 15 minutes and he would see me after.  I asked about what he was going to do and he wouldnt explain anything. Hes originally said it was in my parotid and now he says it is my lymph. wasted 2 more weeks.  He is not sociable, he just comes in, loooks, says go do this and come back.  

shirley123

THMoore said:

Suz,

Suz,

The report came back saying some nontypical cells were found but not sure what is was.  Recommended removal.  The ENT originally told me it was my paotid gland.  Then he just said, Not sure yet want to remove the node tuesday.  He wouldnt explain anything.  Just in and out.  MD Anderson called and said the lead doctor assigned said to not remove the node and wait till I see them.  My local ENT does not discuss or expain, he just says hes the lead ENT, he does the surgery, basically he is in and out in 5 minutes. 

MD Anderson

I would get MD Anderson opinion before doing anything.  As teaching hospital MD Anderwon would have access and knowledge of all the most recent testing and treatment plans.  

THMoore

shirley123 said:

MD Anderson

I would get MD Anderson opinion before doing anything.  As teaching hospital MD Anderwon would have access and knowledge of all the most recent testing and treatment plans.  

Roger that.  

Roger that.  

 

Thanks Miss Shirley

corleone

shirley123 said:

MD Anderson

I would get MD Anderson opinion before doing anything.  As teaching hospital MD Anderwon would have access and knowledge of all the most recent testing and treatment plans.  

I agree with Shirley.

I agree with Shirley.

A local ENT doesn’t have the expertise that folks at a large cancer center do have, mainly because they don’t have so many patients with this pathology, not to mention resources.

If the local ENT removes the lymph node, they can’t perform as many tests as required, in order to assess the best course of action. Once the node is removed, is gone. They could send the paraffin block to MD Anderson afterwards, but it’s not the same thing; some tissue will be lost, and who knows if they remove and prepare the tissue correctly.

Any large cancer center has a multidisciplinary team, they perform a larger variety of tests, and can determine with a higher degree of accuracy where the primary (tumor) is. If accessible, that should be biopsied, not the node.

Also, waiting 3 more weeks doesn’t make a great deal of difference it terms of disease progression.

wbcgaruss

It Sounds Like

Your ENT is not very communicative. You said " I asked about what he was going to do and he wouldn't explain anything. He's originally said it was in my parotid and now he says it is my lymph. wasted 2 more weeks.  He is not sociable, he just comes in, looks, says go do this and come back." He may be a great doc but you can't feel good about a major health situation like cancer if he won't even explain things to you. Can you look him up on the web and see if he is highly rated. If he is very good at least you have that going for you even though he is not a guy with the greatest bedside manners. I just went through some major things and had operations and before the operation, they explained them to me and gave me a chance to ask questions. This would be unsettling and on top of that, he said it was parotid then said it was lymph. Is there someone else on their group you can request? I think I would just wait till you go to MD Anderson as something about your explanation is not comfortable. My wife had a doc like that one time for an eye problem, he was the boss and after the first meeting, we said we are not going back there anymore. Anyway, it seems you are not comfortable with this doc and unsettled about the whole thing so you need to be with a medical team you feel confident in and comfortable with a major thing like cancer. At the very least I would get a second opinion but actually, you have that coming up at MD Anderson. I know how you feel, we all do you just want this cancer gone and move on with your life but focus and consider your options and be sure you are comfortable with each step as much as possible. Hopefully, some others will add in here-Sorry I made this so long you have some decisions to make involve wife and family if possible-Take Care-God Bless

THMoore

wbcgaruss said:

It Sounds Like

Your ENT is not very communicative. You said " I asked about what he was going to do and he wouldn't explain anything. He's originally said it was in my parotid and now he says it is my lymph. wasted 2 more weeks.  He is not sociable, he just comes in, looks, says go do this and come back." He may be a great doc but you can't feel good about a major health situation like cancer if he won't even explain things to you. Can you look him up on the web and see if he is highly rated. If he is very good at least you have that going for you even though he is not a guy with the greatest bedside manners. I just went through some major things and had operations and before the operation, they explained them to me and gave me a chance to ask questions. This would be unsettling and on top of that, he said it was parotid then said it was lymph. Is there someone else on their group you can request? I think I would just wait till you go to MD Anderson as something about your explanation is not comfortable. My wife had a doc like that one time for an eye problem, he was the boss and after the first meeting, we said we are not going back there anymore. Anyway, it seems you are not comfortable with this doc and unsettled about the whole thing so you need to be with a medical team you feel confident in and comfortable with a major thing like cancer. At the very least I would get a second opinion but actually, you have that coming up at MD Anderson. I know how you feel, we all do you just want this cancer gone and move on with your life but focus and consider your options and be sure you are comfortable with each step as much as possible. Hopefully, some others will add in here-Sorry I made this so long you have some decisions to make involve wife and family if possible-Take Care-God Bless

you are 100 % correct. Corpus

you are 100 % correct. Corpus Christ was the closest city to where I live.  I did look up his credetials.  Lots of complaints about not explainng just in and out.  Originally, he said after reading the CT scan it was my parotid gland and now he is sayng its outside in a lymph.  No big deal, just take 15 minutes and remove.  Thats all would explain.  I was pissed.  He according to the reviews and other doctors I have talked is one of the leading ENT's here.  I am not going back to him and have decided to go to MD in Houston as soon as they can get me in.  I appreciate you taking the time to talk.  I am really scared.

Trent

SuzJ

Go to MD Anderson, Never go

Go to MD Anderson, Never go with someone that wont talk to you@ You are paying his salary! Remember that!

ERomanO

Removing a lymph node (or 2) to get an immediate diagnosis was an "option" offered by my local ENT.  Then, if the biopsy came back positive, he would do a modified radical neck dissection.  He was very forthcoming with information, but he and his staff were fairly high strung and that's what I didn't care for.  I chose to get a 2nd opinion at Cleveland Clinic.  They said all the same things that my local doc said - suspected tumor at base of tongue, very treatable (but they had an official diagnosis by then) - except that no surgery was required.  Many here have had a neck dissection and everything went well, but I chose to go with the more well known hospital for my treatment... and with the docs and staff that were low keyed and made me feel much more at ease.

SuzJ

totally, sorta different

Years ago, when I messed my knee up, I needed surgery. So a friend recommended her surgeon, he was sooo great.

I went to see him, 1/2 an inch of paperwork, finally made it past the waiting room, nurse came in, asked me another 10 - 15 mins of questions.

Dr came in, shook my hand poked my knee, said.. hmm.. walked out.

Nurse came back in, said, "dr said you need a CT scan, and he'll do surgery on xx day"

I replied, No he won't, if he cannot be bothered to actually talk to me, he is NOT cutting my knee open!

So I googled Ortho's in my area, and found one that I thought would do a good job. He was also highly recommended. He did a great job, and had great bedside manner.

BUT people change, older people sometimes become complacent.

Younger Doctors while missing years of experience have new education on their side. So much so, that when I went back about my knee last year, the surgeon that repaired my meniscus, walked in, said, "you need a new knee, I'm going to cut from here to here I'll send my cheduler in"

No oh NO, I left, went to a different Dr I researched, and he went with the gel shot, and my knee *touch wood* is doing great.

 

So research, research, research. go with your gut, your heart and your mind. If you are not comfortable, leave. This is the only time you will ever hear me say anything good about Dr Google. As far as MD Anderson, I don't know it, but I am sure they have a lot of Drs, request the one you want. It can't hurt to try. I did, mine was awesome from start to finish

lorih864

I don't know which direction

I don't know which direction you decided to go... here's my experience. Two academic university teaching hospitals, MDA being one of them. MDA was my second opinion given the distance from home. In truth, I felt while I'm sure MDA lives up to their reputation, it felt salesy to me. And, that was before I developed the opinion that I am a revenue generating opportunity for the medical community. If my cancer was rare or sexy I would have gone to MDA. I was stage iv scc hard palate, maxilla, sinus, neck bisection.

 

annie4145

I know your worry.  I had

I know your worry.  I had everything ready to start treatment at one hospital, and then got a second opinion and decided to move to the second hospital but the treatment wouldn't start for approximately 3-4 weeks later.  During that time, I was a nervous wreck, crying, anxious.  I was so worried that the wait was going to cause the cancer to spread.  So I can't answer this question for you because there are both benefit and risks for waiting.  But I think MD Anderson would be better place to get treatment.  Sometimes local  hospitals don't have as good of local labs, and won't give the degree of detail that a good hospital might want in the labatory tests.  There are alot of reasons to wait.  Can you call MD Anderson and ask them to call you if they have any cancellations at all?  IF MD anderson is asking you to wait, there must be a reason for that request.  They aren't saying, go ahead, and just send us the test results...

THMoore

Thanks for the Great Advice and Guidance

MD Anderson Update (The Road to Surgery)

I wanted to provide the latest information available on my personal journey with Cancer. All required tests were completed last night at 7:30 PM. My primary Physician contacted us at 0800 to explain the results and plan of action moving forward. 

All tests returned showing a malignancy in one area only. My neck Parotid Gland region or saliva gland. The tumor looks to be of a less aggressive nature, but until surgery is performed, and pathology is performed on the tissue, the status is uncertain. Hope is surgery will be the only required action. If not, six weeks of radiation might be required to kill off any remaining cells. We are waiting for a surgical date from the team. It looks most likely to be this upcoming week or so.

It is unbelievable how professional, caring and loving the employees are at MD Anderson. Everyone is a team. Everyone has input. Everyone listens. Everyone wants to learn. Why can’t other facilities operate this way? 

Anyway, once again, I would to thank everyone for all the excellent advice, prayers, love, and most kind words of encouragement. I can say with 100 % certainty, we love all you from the bottom of our heart. My next update will be post-surgery.

annie4145

THMoore said:

Thanks for the Great Advice and Guidance

MD Anderson Update (The Road to Surgery)

I wanted to provide the latest information available on my personal journey with Cancer. All required tests were completed last night at 7:30 PM. My primary Physician contacted us at 0800 to explain the results and plan of action moving forward. 

All tests returned showing a malignancy in one area only. My neck Parotid Gland region or saliva gland. The tumor looks to be of a less aggressive nature, but until surgery is performed, and pathology is performed on the tissue, the status is uncertain. Hope is surgery will be the only required action. If not, six weeks of radiation might be required to kill off any remaining cells. We are waiting for a surgical date from the team. It looks most likely to be this upcoming week or so.

It is unbelievable how professional, caring and loving the employees are at MD Anderson. Everyone is a team. Everyone has input. Everyone listens. Everyone wants to learn. Why can’t other facilities operate this way? 

Anyway, once again, I would to thank everyone for all the excellent advice, prayers, love, and most kind words of encouragement. I can say with 100 % certainty, we love all you from the bottom of our heart. My next update will be post-surgery.

That is really good news!   

That is really good news!   

wbcgaruss

Wonderful-Glad for You

Sounds like a good plan and a great care team you are happy and comfortable with-wishing you the best-Take Care-God Bless

renegade80

I personnally believe in MDA.

I personnally believe in MDA. I have been getting my treatments there since 2015 and my ocal doctors origannaly told me to go home and get my affairs in order. The team there gave me radiation and chemo and now I am getting immunotherapy they are always ready to explain everything and they are on the cutting edge of new treatments. I wish you the best. What ever you feel most confident with is the best choice for you.

HobbsDoggy

Fantastic

Really, really glad.  Your journey is a teaching lesson for many.  A basket of joy to you.  Sometimes if the case is not overly complex and they have the equipment local can be just great if they care, take the time and explain and have the skill.  This i am, not telling you and you don't have a right to my time or an explanation means that its a no go.