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Confused and Very Upset

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

Hey Guys,

The ENT visit on Tuesday was horrible. I left the office in tears and stayed that way all day. The ENT wants to do major surgery on my dad, just to take biopsies. He wants to take 6-9 biopies and then do a scoope down his throat just to look around. When he had his scans on the 30th of August they were clear except for activity at 3 on the tongue. The ENT then told my dad that he is at risk for being put to sleep for the biopies. He thinks that there is a 50% chance there is cancer in the tongue, because it feels irregular and my dad told him he can still feel just a little irratation there. He does not have pain just notices that the tongue feels different. He said that after the biopies he will must likley need the major surgery to remove his tongue and that would only give him a 50% cure rate. He could choose to do chemo to slow it down but that would not last very long. He was so negative and cold to us. He then argued with me that he was the one that did the first biopsy and he was not. That was an oral surgeon.

My dad said he will not do the surgery or even the biopsies at this point. He said that his tongue is feeling better even more so in the last two weeks. I heard the ENT on the phone talking to the oncologist and waiting 2 monthes and rescanning was mention, however that option was not given to us.

I still feel like to could be scar tissue and sweeling from the radiation. It has not even been 3 monthes since treatment ended. I would be more concerned it was cancer if my dad was not noticing am improvement.

I have a call into the oncologist and am waiting to hear. Please share with me your opinions. I know some of you have had things lite up on the scan and they have waited and watched. Also, do all biopies have to been done as a major operation?

Thank you so much for all of your support,

Kathy

ratface's picture
ratface
Posts: 1238
Joined: Aug 2009

Based on what you stated I hardly think someone could make a decision to cut out his tongue. You certainly need a second opinion here. Where is he being treated? The being put out for biopsy is normal and scoping is not a big deal.

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

The doctor is in Winchester. We were referred to him by the oral surgeon that first did his biopsy. He was awake when they did that one. What are they looking for when they do the scope. They did the one up through his nose in the office yesterday and everything looked good. So what would they be looking for this time.

Kathy

Noellesmom
Posts: 1299
Joined: Aug 2010

My husband has been scoped and had biopsies done. He was put to sleep. Jim also has/had BOT cancer as well as hypopharyngeal. He finished treatments a few weeks ago.

Kathy, I think at the very least y'all need to take some time to think about what just happened with this doctor. Believe it or not, we have had doctors pull the wrong chart (patient with the same name) and start discussing the case. There was much confusion until I opened my mouth and said, "I don't think so..."

Maybe there is some kind of mix up...at any rate, you need to take the time to find out exactly what is going on here.

I'm sorry you are going through this.

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

They're talking about a "Panendoscopy" with biopsies. He will be asleep for this procedure. That's normal. This is a good diagnostic exam and should be part of the arsenal of diagnostic proceedures used to look "harder" for something that may or may not be there.

What's NOT good however, is the way you and your father end up feeling after an appointment with this ENT. I agree, time for a 2nd opinion. Is this MD part of a "Cancer Center"? are you able to go to an ENT affiliated with a Cancer Center? or University Medical Center?

Best of luck, keep us up to date.

Lisa

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Kathy,

After all the troubles this doc has caused you and your Dad I would definitely go talk to another. Even if the second doc gives you similar recommendations, find someone you can trust and feel good around. It's tough enough to go thru all this crap without having the person telling you this, is someone you don't like or trust.

I'm not much into giving advice as that's not the definition of a "support group", but I would definitely call and talk to a couple of other docs ASAP. This guy sounds like he is not in your corner.

Good luck and positive thoughts!

Greg

Pumakitty's picture
Pumakitty
Posts: 653
Joined: Mar 2010

The oncologist just called me and agreed with me that my dad did not need to have the biopies at this point, exspecialy since he is feeling an improvement with each week. They are going to schedule another PET at the end of the year and see what is going on then. He also made me feel better about the biopsy procedure that it was not major like the other doctor told us. I appreciate all of your responses, they made me feel so much better. You guys are the best.

Oh, and my dad said thank you for everything you have taught him. He said it makes him look very very smart :)

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Kath, Glad to hear you have some better news today, but from where I sit, I would definitely locate another doctor and get a full 2nd set of opinions. You obviously do NOT get along nor like this guy nor do you have the confidence that you really need when going through this. Also remember a scope will only see a legion or tumor or whatever if it is, if is protruding or part of the epithelial tissue, or related swelled to something below the surface that they can detect.

Scam

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Puma,
Here is what you wrote on Monday:

"My dad has a follow visit with the ENT Tuesday. The last two visits did go well. This visit will determine if we find a new doctor."

Did this visit determine whether you and your father find a new ENT?
I am very glad the oncologist calmed things down. Use this time to research other ENTs. Especially ones who know or specialize in H&N cancer. Might even be worth it to travel a bit to get a 2nd opinion. Peace of mind is huge.
Hang in,
Kim

nicki74
Posts: 55
Joined: Feb 2010

hi, my dad had the 8 biopsies done about 9 weeks out of treatment, im pretty sure our dads are pretty close as far as treatment time.. the ENT did put my dad to sleep, and it took about 5 hrs total.. that "visit" you are talking about.. yep, we had that too.. after all this treatment, they went back to saying that my dad would probably have to have the major surgery discussed at the beginning of this "journey"... needless to say that was one of the worst days of my life.. long story short the biopsies showed no cancer.. and yes with PET scan taken about 8 weeks out of treatment it did show activity in the mouth area, but the ENT told us ahead of time that he was expecting that due to all the damage caused by radiation.. but after going in and doing 8 biopsies, i think the ENT was quite surprised that none of them showed Cancer...

2nd opinion is always good... this doctor my father is with, was our 2nd opinion.. we see the oncologist, ENT and radiologist once a month at Rush in Chicago...

stay strong, im always here to talk.. please keep us posted...

in my prayers always
nicki

D Lewis's picture
D Lewis
Posts: 1530
Joined: Jan 2010

I have a great deal of respect for my ENT. He did identify metastisized SCC in a lymph node THAT WAS 3 CM IN SIZE. However, he is not an oncologist, and knows nothing about cancer and radiation and chemotherapy, and how they work and how the human body heals after treatment. I feel so lucky, I went to the Stanford Cancer Center and linked up with a Head/Neck Surgical Oncologist. Now this is a doctor I can really trust to interpret all my scans, biopsies and test results. Try to find an ENT with more specialized knowledge.

Deb

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I agree with the others...It's time to get a second opinion.

I would take the time you have while waiting for the next PET scan to find another ENT who you and your dad will feel comfortable with and who will treat both of you the way you should be treated. This is just my opinion but I would not see any doctor who didn't explain things clearly and show some compassion while talking to you. My ENT originally acted impatient with me when I would ask questions, like I was supposed to know all the answers without bothering him. I was considering a second opinion but after seeing him a couple of times his bedside manner changed completely and I am now very comfortable with him.

The ENT is a very important part of your father's cancer team and you will be seeing a lot of him so please think seriously about getting another opinion.

My best to you and your dad.
Glenna

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

I am with D on this one. I have great respect for my ENT and feel that he had more to do with saving my life than either of my oncologists. Don't get me wrong, they all played a big role. As matter of fact he makes the decisions on scans and I like it that way.

Get you another one. It is time.

Best,
Steve

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Just wanted to let you know I am thinking of you guys and praying for you. I would definitely get another opinion. Hang in there. Email me any time if you need to vent.

Sweet

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Just wondering the name of your H&N Oncologist if you wouldn't mind. I am near Stanford and may give him/her a call to interpret my next PET Scan. I have some hot spots but my doctors say that is normal and the numbers are going down all the time, but another opinion never hurts.
Puma Kitty, we all need good, honest, and trustworthy doctors. If you don't feel you are getting this, trust me there are wonderful doctors out there who would give your dad great treatment and care.
Keep challenging for more information and keep pushing for your pop.. !!

All the best,
Steve

D Lewis's picture
D Lewis
Posts: 1530
Joined: Jan 2010

Dr. Michael J. Kaplan, M.D., F.A.C.S.
Professor
Chief, Head and Neck Surgical Oncology
Department of Otolaryngology - Head and Neck Surgery
Stanford University canver Center
875 Blake Wilbur Drive, CC-2225
Stanford, CA 94305-5826
Appointments 650-498-6000
Admin: Lucy Warren 650-725-5968

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Very glad the oncologist got back with you guys, Pumakitty. I really hope you told him all about your experiences with the ENT. He needs to know what his patients are going through.

Jan Trinks's picture
Jan Trinks
Posts: 466
Joined: Apr 2009

Kathy:

I am appalled at how this ent has treated you and your dad. Charlie and I were extremely blessed by all his doctors being excellent in their expertise but also excellent in their dealing with our questions!(Remember I'm the basketcase). Glad your oncologist set things straight for you! Prayers coming your way!

Jan Trinks

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