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ENT or Endocrine Surgeon

lisaavellino
Posts: 16
Joined: Dec 2011

I was recently diagnosed with papillary cancer a few months ago. My nodule is 1.3 cm and was told I should have a TT. I'd rather take the whole thing out than chance a second surgery. I'm trying to decide if I should proceed with an ENT who specializes in Head/Neck tumors/disease or go with an Endocrine Surgeon. Have meet with both and have listed the pros/cons but wanted to find out if anyone had any thoughts or suggestions.

Thanks

3boys_mom
Posts: 47
Joined: Jun 2011

In my area, there are no good endos, so I went to MD Anderson to have my removed and she did an amazing job. However, I know several that have had the ENT do their TT and they all did pretty good work. The endos here, not as pretty. JMNSHO.

Sarah

lisaavellino
Posts: 16
Joined: Dec 2011

The Endo I'm referring to is an Endocrine Surgeon, they are surgeons of the endocrine system...thyroid, parathyroid, adrenal, pituitary and pancreas. Not a regular Endo dr that you would see after surgery for meds, etc. Sorry If I wasn't more clear in my previous post.

lookingforspring
Posts: 14
Joined: Oct 2011

I did not have a choice where I was living, and my surgeon was not an endo, but he had done lots of TTs. He was, however, consulting with my endo. It went well.

lisaavellino
Posts: 16
Joined: Dec 2011

Lookingforspring - was your dr who did the surgery an ENT?

lookingforspring
Posts: 14
Joined: Oct 2011

I went back and looked up his card (memory is one thing that has taken a big hit with this thyca experience!)--it doesn't say ENT, but says "General, Vascular, Endocrine and Laparoscopic Surgery." So I guess he is more on the endocrine end of things.

sunnyaz
Posts: 582
Joined: Oct 2010

I had an ENT for my Thyroidectomy and for my second right neck dissection. He made mistakes on my second surgery. My third surgery was an Endocrinologist/Oncologist/Surgeon. He was incredible! They know how cancer spreads. The ENT had no clue how cancer spreads and he totally missed the nodes that were targeted for removal in my second surgery. Thereby leading to a third surgery and a second RAI treatment. He also accidentally cut my outer Jugular vein while putting in a drain tube. Drain tubes are very much in the past by the way. They are finding there is no need for them. Wish I had my Endocrinologist/Oncologist/Surgeon for my second surgery. It would have avoided a lot of extra pain, misery and more medical bills. He didn't put in a drain tube and he got all of the cancer. I have been cancer free ever since.
Blessings,
Julie-SunnyAZ

lisaavellino
Posts: 16
Joined: Dec 2011

sunnyaz, thanks for the info....

These are the two drs I'm am deciding between. Both have come highly recommended by other drs, I did meet one person via the internet that had Dr. Bouvet as her surgeon and was pretty much cancer free after surgery. Would appreciate anyone who has gone through a TT before to read the bios below and offer feedback. Thanks in advance.

http://www.sentaclinic.com/mansfield.php

http://drbouvet.ucsd.edu/default.aspx

sunnyaz
Posts: 582
Joined: Oct 2010

Both doctors are experts. I would have a difficult time deciding which to go with. Honestly, I don't think you can go wrong with either of them. Dr. Mansfield is kinda hot! You did have a good recommendation for Dr. Bouvet. That's a really good thing. But, hot is also hard to beat;) I wish I could give you more advise. I truly believe that you are in good hands no matter which doctor you decide to go with, "hot" aside.

Blessings,
Julie-SunnyAZ

lisaavellino
Posts: 16
Joined: Dec 2011

Thanks! Yes I did get a personal recommendation from someone who had surgery with Dr. Bouvet, she spoke very highly of him and also said when she went to see the nuclear medicine dr they were so impressed with how clean she was. Interesting stats from Dr. Bouvet from my recent email exchange with him. Did I mention he answers personal emails?

1. How many thyroid surgeries have you done? I have done 586 thyroid surgeries and 486 parathyroid surgeries over the last 13 years as an Attending Surgeon at UCSD. This year, I did 71 thyroidectomies.

At this point I think I am leaning toward Bouvet...I was a little annoyed that Mansfields office called me yesterday after I called to postpone my surgery to remind me the nodule is calcified...if he thought it needed to come out right away he he wasn't able to get me in for surgery for almost 5 weeks from when I first saw him and when he told me at the time of my visit he would do a TT and then changed his story when he walked me through the surgery and would only take out the left lobe/nodule and if the path at the time of surgery came back benign fully knowing I may need a second surgery. While I appreciate him being conservative, I haven't met anyone yet that this has worked out for them. Everyone has had to go back for the other lobe to be taken out since the frozen section at the time of surgery was not perfect and here is what Bouvet had to say about that.

Thyoid FNA biopsy is quite accurate but no test is perfect. There is a low chance of what we call a "false positive" meaning that although the FNA showed papillary thyroid cancer, the final pathology after surgery showed a benign tumor like papillary hyperplasia. I have only seen this happen once or twice over 10 years of doing thyroid surgery. The frozen section is also not perfect.

Lisa

sunnyaz
Posts: 582
Joined: Oct 2010

Sounds like you have your answer. Gotta go with your gut feeling. Bouvet sounds like he cares. It's really rare for a doctor to answer emails and/or phone calls. That alone speaks volumes. Dr. "Hot" might be a bit wishy washy. I am an advocate for Total Thyroidectomy if you are positive for cancer. I know there is some debate over this, but in every case of Thyroid cancer I have only seen recurrence with hemi-Thyroidectomy's. Even with a TT you can have recurrence like me. Also, be sure to get them to do the B-RAF mutation gene test, even if you have to pay out of pocket. You need to know if you are positive so that you can be very aggressive with your treatment in the beginning. Get it before it gets you.

Keep in touch and let me know what you decide and when your surgery will be.

Blessings,
Jule

lisaavellino
Posts: 16
Joined: Dec 2011

Hi Julie,

I am so impressed with Dr. Bouvet and all the coorespondance via email we have. Its a really good feeling that he answers personal emails. Dr. Hot came across as being very through when I first met him and I had a good feeling but when he went throught he surgery in detail and told me he would base his decision on the pathology at the time of surgery and only take out the left lobe/nodule...I was not comfortable with that since we talked in depth about doing a TT. I had seen 3 other ENT's prior who all said to do a TT so this really was not what I wanted or thought would be in my best interest. I am having my biopsy slides sent to UCSD Moores Cancer center here in San Diego for a 3rd reading...the first came back as worrysome for papillary and then confirmed by Mass General it was papillary (apparently they have an excellent pathology department) so I will feel 100% sure to do a TT once I get confirmation from UCSD the turmor is cancer. Since my surgery is now scheduled for 2/1 due to a work trip the 3rd week in January that buys me some time to get my slides over for Dr. Bouvet's team to review. I asked him about the B-RAF and this is what he had to say....

B-Raf is a gene that is sometimes mutated in thyroid cancer. The mutation occurs in about 45% of papillary thyroid cancers and can indicate that the tumor might be more aggressive. B-raf can be tested on FNA specimens or on the thyroid tumor once it is removed.
The question is: how would it change the initial surgical management in your case? Since we are planning a total thyroidectomy with removal of central neck nodes if they are enlarged, it probably won't change the initial surgical management. You will most likely need radioiodine ablation after the surgery as well so that won't change. If you have the mutation, then we would follow you more closely for recurrence.

I think at this point, we are still trying to see exactly how B-Raf testing fits in to the management of thyroid cancer. It might be helpful in cases that are not definitive for papillary thyroid cancer or for small micropapillary (<1 cm) cancers and in which there is a decision about doing a hemithyroidectomy or total thyroidectomy. If the b-raf is positive, then we would do a total thyroidectomy. Other thyroid specialists have proposed that patients with B-raf mutations should have more extensive lymph node dissections however this has not been tested in a randomized fashion to see if there is a benefit or not. There may be increased complications such as hoarseness and hypocalcemia after normal removing lymph nodes unnecessarily.

If you don't mind me asking where in Arizona are you? I'm in Nothern San Diego.

Take Care!
Lisa

sunnyaz
Posts: 582
Joined: Oct 2010

Dr. Bouvet does have it together. He is spot on with his interpretation of the why the B-RAF test is necessary. It is true that a positive identification will not change the fact that you will need a Total Thyroidectomy. It really just means that you will need to be watched more closely. He may want to be more aggressive with the RAI dose if you are positive. Mine was Micropapillary when it was removed without the knowledge that I was B-RAF positive and my Endo opted me out of RAI after my TT. This was a mistake, but he didn't know at that time. He did the testing on my tissue after my first neck dissection. So, this is your answer; if you know up front that you are positive, you will need RAI after your TT and then they can watch you more closely with follow up care.

This is your doctor! I can say that with certainty he will give you great care. Anyone who wants to take only half of your thyroid with known cancer will end up going back in to remove the other half.

I am in a town called Sahuarita/Green Valley south of Tucson. It's about an hour from the Mexican boarder. I travel to Tucson to see my doctors at the University of Arizona Cancer Center and UMC Hospital for my surgeries and treatments. This is the hospital congresswoman Gabriel Giffords was taken to after she was shot in January. I have two Endo's. One is Dr. Mitchell Parker whom I see every three months for follow up. My Oncologist is Dr. Guerrero who is a specialist in Endocrine Cancer and my surgeon. This is his bio.
http://www.azcc.arizona.edu/profile/marlon-guerrero

I really like him. He saved my life. I feel very comfortable with him and I love that he calls me his "favorite patient." I am sure he says that to all his patient's but it still makes me feel good. Recently I have been going through a scare. I am in the process of finding out what is going on with my right breast. They found a mass during a mammogram. I called his office and within one hour he had me scheduled with one of the best breast surgeons in the country. I go for a follow up mammo (more views) on the 30th and then I see the breast surgeon he recommended on January 5th. I feel very fortunate that I am in a good place with my care. It sounds like you are too.

Best wishes and Blessings for a very Merry Christmas and a Happy New Year!
Julie

lisaavellino
Posts: 16
Joined: Dec 2011

Hi Julie,

Once my biopsy slides get over to UCSD Cancer center I will discuss further with Dr. Bouvet about the test. Sounds as if they can use those slides for the test but just not sure about insurance paying for it. I have to follow up this week since my slides were not at the hospital I had the biopsy at which leads me to think Mass General still had them from October....

This should be an interesting week to say the least...Dr. "Hot" will be back in the office and my surgery with him was originally scheduled for Thursday, I'm wondering if he will call or anyone in his office (I told them last Monday I was postponing it).

Dr. Guerero sounds alot like Dr. Bouvet and talking to another gal on this site who went with an Endocrine Surgeron they all have similar bio's much makes me feel good and that I am on the right track.

I hope everything turns out for the best with your breast. I had my first mamogram this year since I just turned 40 and thankfully it turned out ok, but I was a bit worried with everything you hear these days. That was the most painful experience ever and really not looking forward to it again.

I will be praying for you. If you want to email me directly can we can continue chating my email is my screen name @yahoo.com, I found a really great site via facebook for thyroid cancer, not sure if your on there or not but let me know and I can invite you to the group. I will continue to check in on this site so we can continue to chat...

All the best for a healthy new year.
Lisa

WJA
Posts: 1
Joined: Dec 2011

Having just undergone an complete TT and neck dissection my only advice is the surgeon need to have lots of experience in Thyroid CA surgery. You want to avoid second surgery by having the proper complete picture prior to surgery. My original ENT who did the FNA and found the CA diagnoses actually said he did not have enough experience in patients with partially paralyzed vocal cord where the thyroid enlargement and tumor may be part of the underlying cause and that he would refer me to 4-5 surgeons in the NYC/NJ area who did. I read the BIOS, searched the ATA website(American Thyroid Association), I was fortunate enough to find the chairman of Head and Neck Surgery at my hospital was 100% focused on thyroid CA. Look for the most experienced in your part of the country- consider hospital that focus only or a majority on CA treatment, really work with your Endocrinologist to make the decision right for you - but most of all research the experience of your surgeon regardless of endocrine surgeon or ENT

Bill

alapah's picture
alapah
Posts: 259
Joined: Oct 2009

I agree with what you've said Bill. My TT was actually done by a local general surgeon who is highly experienced in performing thryoidectomies (I've since learned that he does most in my home city). Though not at ENT or Endo, he was a fantastic choice and was recommended to me by my ENT (and later learned that doctor friends recommend him highly as well).

I did have vocal cord involvement and he tried to save the nerve to the right cord but was unable to owing to the tumor tissue encasing it. I have since been to Mayo and MD Anderson, and docs in both places have commented on the expert job he did in my TT.

I guess the lesson is that it's important to research the individual doc and his/her experience in performing TTs.

lisaavellino
Posts: 16
Joined: Dec 2011

Thanks Bill and alapah...

I feel good about my choice of going with the Endocrine Surgeron from UCSD Moores Cancer center. He is a specialist in surgery for Thyroid cancer. He is very informative and answers my personal emails. I go in for my TT on 2/1/12. Currently having my biopsy slides reviewed by his team just to make sure its papillary. The first reading from my FNA was worrysome and when the hospital where I had it done sent it out to Mass General they confirmed it was. So want to take one extra step and have the cancer center pathology team review as well.

http://drbouvet.ucsd.edu/default.aspx

I've been doing so much research I'm about to lose my mind but better to be informed than not.

Happy and Healthy New Year!
Lisa

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