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how to find the best surgeon and treatment team

peggy911
Posts: 3
Joined: Mar 2012

I was just diagnosed with thyroid cancer three days ago. I had a complete physical in October of 2011, and all my blood work was good. I had no health problems at all. My doctor said that I didn't have to come back for a year for my next check-up. About a week ago, I noticed a lump in my neck. I went to my PCP who ordered a TSH test which came back at 84. I had an ultrasound which showed a 2.1 cm. nodule on my thyroid. I was referred to an endocrinologist who sent me for a FNA biopsy. The biopsy did turn out to be positive for cancer. The endocrinologist notified me over the phone. I was driving to work when I got the call. It was quite a shock. They have made an appointment for me to see an ENT surgeon, but that appointment is not until April 2, 2012. I am totally stressed out about having to wait so long to see someone. I am concerned that if the cancer has metastasized, valuable time is being wasted. I also am not at all confident about whether I have been referred to a good doctor. I would like to know if anyone can give me some advice about how to go about finding the best possible surgeon/treatment team/hospital for the treatment of thyroid cancer. I live in Pennsylvania, but I am willing to go out of state, if necessary, to see a good doctor. If they is anyone who can recommend a good doctor who specializes in thyroid cancer surgery, I would be extremely grateful. Thank you in advance for any help you can provide.

Rita12345
Posts: 5
Joined: Dec 2011

Wow, you are dealing with a lot right now. I’m sorry. First of all, let me say that I’m new to thyroid cancer myself and there will probably be better answers than mine that will be posted, but I’ll give you my advice based on what I’ve learned since I found out in December 2011 that I have thyroid cancer.

First of all, I’m slightly confused by your doctor’s approach to this. From what I understand, thyroid cancer cannot be determined by an FNA… that it can only be determined after it is removed and a pathologist looks at it. I have Hurthle Cell Carcinoma so I’m basing my response on my experience.

It is extremely important to find a surgeon that has experience in removing thyroids. There is a “magic” number of surgeries that the doctor has performed that you are looking for and I don’t remember what it is… but ask the surgeon how often he/she performs this type of surgery. It should be a fairly high yearly number. You don’t want someone who only does this a couple of times a year. The surgeon I was referred to has done more than 4,000 in her career. It has been her focus for the last several years. I felt comfortable with that. You should also ask “how often are there complications from his/her surgeries?” Particularly in regards to damage to the voice.

The thing that you have going for you right now is that a lot of people live a long time with thyroid cancer. That’s not to say that this will be easy, and you still have a lot of unanswered questions which make this part of the process extremely hard to deal with and hard to wait for answers. I’d say start researching the surgeon your doctor referred you to now. I know in my state I can look up doctor’s licenses online. My surgeon also had a wealth of information on her website. I would also Google their name to see what comes up. If any of the information makes you uncomfortable start looking for someone else. The big university hospitals are usually good places to go.

What I have learned from reading this and other message boards is that there is a wide range of information that doctors do and do not tell their patients. The single most important thing that I’ve learned from the different boards and from the thyca.org website is that “It is my health that is at stake and ultimately I need to make decisions that I feel are best for me.” Do not settle for anything less. My best to you during this difficult time. Rita

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

While not conclusive, FNA can be a good indicator. I know it's not always accurate - and most come back inconclusive. Mine indicated papillary and that was confirmed in the post surgery biopsy. For more info on FNAs try here: http://www.thyca.org/fna.htm

alapah's picture
alapah
Posts: 255
Joined: Oct 2009

First, do you know what kind of thyroid cancer was noted in your FNA biopsy? there are different kinds. One thing I'd recommend as you begin this journey is to get copies of all of your labs, reports, etc. Write down questions before appointments and, if you can, bring a family member or friend along to appointments. They can ask questions you may not think of and can also clarify or remind you of things that docs told you - it's stressful so it's easy to forget all of the details.

if your FNA came back with papillary carcinoma (the most common type of Thyroid Cancer) it is not uncommon to have a wait as you are experiencing. It is typically slow growing (though not always - but note that aggressive forms are very rare).

Surgery will involve removal of the thyroid and some surround lymph nodes. Spread to lymph nodes is not uncommon so don't panic if that comes to be true in your case. After surgery, most patients go through a treatment of radioactive iodine (RAI). This involves first starving your body of iodine, through diet, then ingesting a pill containing a pre-determined dosage of radioactive iodine. Thyroid cells are the only cells in the body that absorb iodine so this treatment basically targets remaining thyroid cells with radiation. You can read more about this process at a great site full of fantastic info called thyca.org (thyroid cancer survivor's group). Affected lymph nodes need to be removed surgically (some can be treated with an alcohol injection) but RAI typically does not reach thyca in the lymph nodes.

As for a surgeon, I can't give you specific names but here are my recommendations:
Make sure it is a surgeon who specializes in thyroidectomies (TT) and has done many. While removing the thyroid they are working in a small area with many important things such as your vocal nerves and parathyroids. There are four parathyroids in and around the thyroid. Parathyroids regulate the body's processing of calcium and are extremely important so make sure they know what they are doing in locating and saving as many as possible. The parathyroids can become stunned in surgery but nearly always come back to normal. My surgery was done as an outpatient surgery but it included an overnight. This is mainly to allow time to ensure that the parathyroids are working correctly

Many say you should go to an ENT surgeon and that is fine, but mine happened to be a general surgeon with an incredible amount of experience and skill performing TTs. He was recommended by my endocrinologist and ENT. Teaching hospitals can be a good place to start your search, though once again, not necessary. (Mine was in private practice). There is also a yahoogroup for thyca with folks from all over the country so you might have some luck asking there for specific names - if you don't get input here that is. I do know that the Hospital of the University of Pennsylvania is known for its thyroid specialists and thyroid cancer research. Unfortunately, I do not know the names of surgeons there.

I'm sure to have missed things here but I hope it's a helpful start. I know it's very difficult to deal with such a diagnosis. Try to take one day at a time if you can.
Best to you Peggy.
eileen

peggy911
Posts: 3
Joined: Mar 2012

I sincerely appreciate all of your responses. Your words are both helpful and encouraging. I will definitely use this information and your suggestions. I wish all of you the very best too, and I'll try my best to take this one day at a time. Having your support makes this a little easier.

peggy911
Posts: 3
Joined: Mar 2012

I sincerely appreciate all of your responses. Your words are both helpful and encouraging. I will definitely use this information and your suggestions. I wish all of you the very best too, and I'll try my best to take this one day at a time. Having your support makes this a little easier.

yolandatt
Posts: 1
Joined: Mar 2012

If you live near Philadelphia, UPenn's Endocrine Surgery department has a surgeon, Douglas Fraker, who was recommended to me (http://www.uphs.upenn.edu/surgery/faculty/dlf.html). There is also the Penn Thyroid center (http://www.uphs.upenn.edu/endocrin/patientcare/ptc.html). I have no experience with either one.

I live right outside Philadelphia, but I did not go to UPenn for my thyroidectomy (I had papillary cancer on both sides). If you are having a pretty typical thyroidectomy, then I think the most important thing is to get recommendations for an excellent ENT who has done a lot of thyroidectomies and who does them frequently.

I was super freaked out about having neck surgery and about choosing the right surgeon. I talked with my PCP about my concerns. My PCP was really helpful, and I chose to stay in the Philly suburbs with a local ENT (Kennith Briskin) who my PCP highly recommended. I'm very glad that I did. I had an enlarged thyroid that was wrapped around my trachea, so my surgery was a bit trickier than usual. It went really well, and Dr. Briskin was able to save all my parathyroid glands, which makes recovery easier. I would definitely recommend Dr. Briskin based on my experience with him. UPenn, obviously, has expert thyroid surgeons, and likely ones who are more specialized in thyroid cancer surgery than you would find outside University hospitals. However, it is possible that some of these surgeons are most interested in very unusual cases and may not be the actual surgeon who performs your surgery if your case is more typical (I don't know if this is true or not). Ultimately, the decision is yours and should be one that makes you feel most comfortable. For me, just talking with my PCP about all my concerns, hearing his recommendation, and getting his reassurance that this was the right choice for me really helped me feel a lot less stressed out about the surgery. Since you can't see the ENT until April 2nd, maybe talking with your PCP soon about your concerns and about finding the right surgeon would help with some of the stress you are feeling.

Good luck.

lisaavellino
Posts: 16
Joined: Dec 2011

Hi Pegg911...

This may sound like a strange question but are you on Facebook? There are several support groups and private ones with tons of people who have great information about thyroid cancer. If you want more information send me a personal email to lisaavellino@yahoo.com.

I was diagnosed on 10/31/2011 with papaillary and had my TT on 2/1/12 so I know exactly what your going through.

We are all here for you....

Best of luck.
Lisa

minniejan
Posts: 88
Joined: Dec 2010

I can highly recommend HUP. (Hospital of the University of Pennsylvania). Thyroid cancer was my second cancer in less than one year and I ended up at HUP for both of them. The most important thing that I can stress to you is to get a second opinion.

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