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Being referred to thyroid surgeon for evaluation of enlarged thyroid and nodules

hopeful girl 1
Posts: 454
Joined: May 2010

Friends,

I am scared.

Got a call from my oncologist's nurse today and since they don't handle thyroids, and my oncologist reviewed the results from thyroid ultrasound, he wants to refer me to a thyroid surgeon for evaluation.

I thought normally people see Endocrinologists for this? I will probably need more tests first, so it seems premature to be sent to a surgeon? Sue, were you sent to a surgeon I know you said neck and head doctor......

I am just so freaked out. I finished my chemos in November and now this scare. I don't want to have to have another surgery, or need more treatments. I don't feel my body would be ready, counts still coming up etc.

Plus you really need to have a doctor that knows that they're doing with thyroid even for the fine needle biopsies etc. You need someone how does a lot of them or they can come back with nonsufficient findings if they don't get enough tissue.

And I have heard stories of them removing 1/2 of someone's thyroid and then needing a second surgery to remove other half because they find it was cancerous afterall.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Cindy:

Did you call the thyroid surgeon? Call his office and ask what kind of surgeon he is (ie. onc/surgeon). At least you can review his/her stats before your appointment. You must be feeling so uneasy about all of this. But don't let your uneasiness stop you from asking questions. It seems that you are not getting the answers you want. Call your gyn/onc and speak to the doctor directly if the nurse can't help you or ask for an appointment again with your gyn/onc to get the answers. Ask the doctor outright why they want you to see a thyroid surgeon.

I had a physician assistant call me and tell me about a positive biopsy I had and that she wanted to schedule me for radiation. I said I am not doing any treatment unless I speak with the doctor. I then made an appointment with the doctor to review my findings and options that I may have. In the long run {and after switching doctors) although I did have surgery, I did not need radiation. And if you do not understand something, keep asking. You will feel so much better about any decisions that you will have to make. If you feel they can't explain everything to you in words you can understand or making it clear, I would get a second opinion.

When you take control, your uneasiness will go away. Yes, a doctor may still say you need surgery {or not], and like any surgery, it is scary, but you will be in control and less "freaked" out.

My best to you Cindy. I am glad you had a great Christmas holiday. Sending you hugs and prayers for a peaceful mind.

Kathy

hopeful girl 1
Posts: 454
Joined: May 2010

Kaleena,

It is next to impossible to talk to my gyno-oncologist/surgeon on the phone. He is very prestigious in his field and in very high demand and so his nurse handles his communications by phone. She will check with him and call back with the information. If it were a matter of another gyno problem he would see me for an appointment to discuss. I have my next follow up with him for the uterine follow up end of February 2011 for exam and CA125 test. He is so popular he is double and triple booked for appointments. He's a surgeon, oncologist, professor and head of the department.

Since he does not handle thyroids he is referring me. The ultrasound showed an enlarged thyroid, and multiple nodules, two of which were predominantly solid. That is why they are referring me for further evaluation. I am going to ask if they can go ahead and order the thyroid blood test panel for me, so that the new doctor will have that to review by the time I get to see him. One of my doctor's secretaries called to try to get me an appointment and was not able to reach anyone today, so she left a message for the thyroid doc to call me for an appt and to call their office back with the info as well. I hope it does not take a long time to get an appointment-because otherwise I will just be worrying about it all.

My holiday was not ideal, because I was in very sad spirits, but I did enjoy spending time with my brother and his wife and my newphews.

Cindy

I looked the doctor up on my hospital's website and he is a general surgeon which specalizes in endocrinology and thyroids-so I am sure that is why my doctor is referring me to this doctor.

Still I am very nervous. I so was hoping I did not need anything else done to me until my February follow up appointment. Perhaps this will turn out to be a watch and see thing....but I have a feeling maybe not.

I understand that uterine cancer does not spread to the thyroid, so if it is cancer, it is probably a secondary cancer. Although they say 50% of people have thyroid nodules, and 90% of nodules are not cancerous.

I asked the nurse why being sent to surgeon, and she said to be evaluated. I would just think I would need further tests first before being sent to a surgeon. I hope I am not headed for a thyroidectomy.

Plus I have been on disablity, and my employer just terminated me-so I have that on my plate now as well-and will have to pay triple for COBRA.

Cindy

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Your onocologist referred you to a specialist in thyroids. That doctor will know what tests he wants done, rather than your onocologist guessing what he might want. Just because he is a surgeon, does not mean you will have surgery. This doctor is used to seeing different problems with thyroids. Try to focus on the fact that 50 per cent of people have thyroid nodules, and 90 per cent of the nodules are not cancerous. Look at the positive, until you know differently. I know that is difficult, but remember that all the worry and stress does not help your body. Remember you are going for an evaluation. You have been through so much, so give yourself permission to not let this consume all of your thoughts. You remain in my prayers. In peace and caring.

hopeful girl 1
Posts: 454
Joined: May 2010

Ro,

Thank you for your kind comforting words. You are right, just because the specialist I am being sent to is a surgeon does not mean I will need surgery. My oncologist may happen to know that this guy is really good. I looked him up on the hospital web page and he has special interest in endocrinology and thyroids. He is a general surgeon.

Today I went for bloodwork for my CBC to see where I am at, and I asked them to throw in thyroid panel test and a CA125 for good measure. My last chemo was Nov 2.

Usually the nurse calls in the evening but I didn't hear anything today, so hopefully I will hear tomorrow.

I am curious is the thyroid levels could indicate over or underactive thyroid.

The bummer part is, I was told I can't get in to see this thyroid doc until end of January. I don't want to wait a whole month on this. The guy is on vacaton until mid next week, so I don't know if when he returns if my gyno oncology team can do anything to help me get a quicker appointment, or if I should look into other places. I prefer to stay at the same hospital (which is a large teaching university hospital) as they will have all my records of what I have already been thru'.

Thank you for keeping me in your prayers and again for your encouragement.

Hugs!

Cindy

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

Cindy-

My thyroid has been watched since at least 2000. I have a couple of nodules, one with some solid areas. I just had another ultrasound a couple of months ago and there has been no change. Six years ago I saw a thyroid surgeon (Ooh my, that man was handsome! I'd forgotten about him . . .) because a fine needle biopsy showed Hurthle (sp?) cells which can be precancerous. He felt we could just keep an eye on things, which is what I've been doing.

My thyroid tests have always been normal. I've also seen endocrinologists.

I hope your visit is totally uneventful and surgery is not necessary. Thyroid cancer is usually curable with surgery alone. Of course, we'll still worry, won't we?

Happy New Year
Suzanne

hopeful girl 1
Posts: 454
Joined: May 2010

Thank you for your encouraging post. It is nice to know you experienced the same type of thing and have been able to just monitor it. That is what I am hoping for as well.

Did the fine needle biopsy hurt alot? I am nervous about that.

How are you doing? Were you diagnosed with the breast and uterine cancer at the same time? Are you in treatment now or completed? How are you feeling?

Hugs,
Cindy

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

Thanks for asking, Cindy. Yes, I was dxd with both breast and endometrial cancers 4 days apart in April 2010. I was one scared woman. I've completed treatments. Surgery and periodic paps is "all" that was needed for the endo cancer - Stage 1, Grade 1 (tumor 1/3 into uterine wall, that's under 1/2 - whew). I had lumpectomy, chemo and radiation for the breast cancer (Stage 1, Grade 2, oncotype 31). Finished rads Dec. 1. I started Arimidex 2 weeks ago and so far, so good. Both surgeries and treatments for "both ends" were planned and well coordinated. Of course nothing definitive could be done until after both surgeries and stagings. I was very fortunate. I feel really blessed to feel so good so soon, altho the last chemo was pretty scarey, but it's over. Now if I'd just grow some eyelashes and eyebrows (hair is growing, about 3/4" and sparse). I shaved my legs this morning for the first time. Happy New Year to me.

My fine needle thyroid biopsy did not hurt at all. Not at all. Hope yours is the same.

Suzanne

hopeful girl 1
Posts: 454
Joined: May 2010

Wow!!!1 Your experience is amazing, and you came thru' it very well. You were so fortunate to have a lower grade and stage cancer in both cases.

Glad to hear that the fine needle biopsy was not bad in your case. Hope mine will be the same also.

I am just hoping that they don't find any cancer in my thyroid of neck.

I finished my treatments for uterine 3C in November and my blood counts are just now recovering and all else was good-but I do have quite a bit of discomfort in my neck.

Also, my employer terminated my employment, I am on long term disability. This happened unexpectedly just a few days before Christmas.

So, I am trying to keep my spirits hopeful.

Cindy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

You are scared and anxious - both normal. You also have a very good gyn/onc who knows the very best people in their field - he probably referred you to the very best thyroid doc.

While I have not experienced problems with the thyroid. I, too, have metastatic cancer in my lymph system. I was referred to ENT for removal of lymph node in my neck. The doc was great, surgery went well, but unfortunately I needed more treatment.

My point is - your worry is NOT helping you now. I believe in advocacy 100% and perhaps you can get an earlier appointment with another doc - I requested that and voila I got an earlier appointment!! So I recommend that you advocate strongly for yourself and then....work to calm yourself down. Distraction, yoga, massage, meditation, thinking healing and positive thoughts have all helped take me "out of my own head" which can be a dangerous place for us to be.

I wish you peace and I will keep you in my prayers. Mary Ann

hopeful girl 1
Posts: 454
Joined: May 2010

Mary Ann,

Thank you for your post.

I am very worried about the thyroid, but I do not know yet if it is cancer.
Right now all I know is that I have multiple thyroid nodules (which I am told 50% of poplulation has) and a "prominant in size" thyroid. On the bright side, it showed that the adjacent to the thyroid lymph nodes were not enlarged. Two of the largest nodules are predominantly solid, so that means further investigation. I am told even solid nodules are usually benign with the thyroid. I am also told it would be extremely rare for uterine cancer to spread to the thyroid. But there is always the chance it is a secondary cancer. I am being told it will probably be fine. Hmmmmm...I hope so.

That said, I am still scared. I am worried if there could be more than the thyroid too. My neck and glands have been beeling swollen.

Can you tell me when you had the lymph node issue in your neck, how was that discovered? If I recall from posts did your CA125 spike, and a ct/pet scan was done and found it?
If not, how did they find this was cancerous? Did you have symptoms?

My last chemo for the uterine cancer was in November, and my cancer marker test as of last week was 7. Last time it was a 5, but now a 7. I am told not to worry, that the test will jump alittle bit back and forth and that is normal. I didn't like it though, as I have been a five since August after radiation. Even after chemo 4/5/6 it stayed a 5.
To top it off, as I have been on long term disability, just a few days before Christmas my employer terminated me. Now I will have to pay very high COBRA costs for insurance, out of my disabilty checks-which of course are less than the salary I was making.

So this is all very scarey.

I am doing my best to keep the faith, and try not to worry too much-which is hard for me. I am a worrier by nature.

Hugs to you, and I am so glad that your treatment was successful per your other post! YAH!

Cindy

Michaelynn
Posts: 83
Joined: Apr 2010

Cindy

Have you tried posting your concerns on the Thyroid Board? I bet you would get more answers from that board.

Michaelynn

hopeful girl 1
Posts: 454
Joined: May 2010

Michaelynn,

Thanks for the suggestion of the thyroid board.

I have posted a few inquiries there as well.

Cindy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Wow - I'm VERY HAPPY for you that your CA125 is so LOW!!! That would be an extremely good sign for me - and you too if this is a reliable marker.

To answer your questions - I had rising ca125 numbers starting in Feb then I discovered a lump above my clavicle in April which showed high uptake of SUV on PET. I was referred to ENT who removed it in May and pathology showed it was recurrence of uterine cancer. I opted to wait and watch (hopeful that the surgery got everything) and followed a strict anti-cancer diet and took supplements recommended by homeopathic practitioner. ca125 continued to rise. Repeated PET in Sept and the same area (supraclavicular) was well lit up on scan - doc called this "resistant" and recommended combo of chemo and radiation. This was completed in Nov and was successful!

Worry is normal but not helpful for us. When I was in one of my tearful fearful states, a co-worker of mine lovingly told me that I needed to have faith. She was right. She said God had brought me this far and he will continue to help me. Another time a friend said "you need distraction" and we met for a nature walk that day. I know all this is easier said than done. The only thing that worry will do is to help you become more anxious and depressed which will lower your immune system - not something you want.

If you are open to new things, I suggest using guided imagery CDs to help relax and visualize yourself with a healthy thyroid and immune system (check the library). A lifesaver book for me was "Getting Well Again" by O. Carl Simonton, MD. This will help you uncover some of your core beliefs which may be sabotaging your well-being. He teaches meditation techniques to help heal. A must read in my opinion.

Cindy, I am so sorry about your job and health insurance situation. Are you eligible for federal assistance to help pay for COBRA - a coworker had the same situation as this and got COBRA reduced more than half. Her employer did not tell her about this so it is something you may have to ask the insurance company about. They have case managers that can advocate and give info to us. Another possible source of info and help is your treatment facility - ours recently added "nurse advocates" to help patients.

So, my friend, I hope some of this has been helpful for you. Again, IF the ca125 is a reliable marker for you, then I think the thyroid issue is definitely NOT cancer and I give you permission to worry (if you must) about something else!!

I trust that you will find respite from this burden very soon. I send you prayers for healing and peace. Mary Ann

hopeful girl 1
Posts: 454
Joined: May 2010

Mary Ann,

Thank you for your post. It was both comforting and informational. I will check into the COBRA issue, if there is a possiblity of a reduction in COBRA amount for me.
I was let go before Christmas, and still have not received the COBRA package, so I contacted my former employer and I was told my info was submitted about a week ago, and I should receive package in 10-14 days. They advised me to contact them when filled out, and they will follow it and try to make sure it gets handled timely. In the meantime I was told to use my current card for appointments, and anything kicked back will be resubmitted once COBRA goes thru.

You are right, worrying is not good for our immune systems. I am still worried, but this week I have been doing alittle bit better of a job of keeping calmer, and hopeful that it will work out ok. I was nervous that my CA125 went from a 5 to a 7, even though that is very minimal, but still I didn't like it. I have been a 5 since after radiation ended in August, and then after chemos 4,5, and 6 I remained a 5. Then on 12/28 when I had my thyroid blood work and CBC, I asked them to throw in a CA125 and it was 7. My oncologist's nurse said that is considered to be the same number as the 5. She said it is known to go up and down alittle bit-that it is not static (meaning does not stay the same) and that if you took it twice in one day it would likely be a different number. So I hope she is right and next time it goes back down and not up. I know it was a tiny amount but I didn't like it.

When you had the radiation for your supraclavicular node, was that rough? Did you have trouble eating? Did they radiate your neck area? Did you have one of those face masks to wear during radiation? When I went thru my radiation for uterine, I saw the molds against the wall, and they had molds for people's heads for those that were having neck radiation. It looked intimidating to me.

I am proud of you and happy you did well with your treatment for this.

Thank you for your kindness and caring.

Hugs
Cindy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Cindy,

yes, yes, and yes. The treatment was rough and ended up to be very painful and I was hospitalized for 5 days at the end. I could not eat and lost 10 pounds which I have since gained back. I don't know if this is normal or not. I will see my doctor tomorrow and learn more.

my observation is this - Docs do not tell us much - to avoid scaring us or (if we are natural worriers) that we don't project and get ourselves sicker than we need to me. I learned that there are "long treatment effects" of the radiation that I had and that I might get "sticky" platelets that might clog my blood vessels sometime in the future. I will discuss this with my doc - but what is the point in getting upset about something I have no control over or might not happen? My job is to be the best steward to my body and mind (which effects the body) in an effort to promote optimal healing.

Cindy, please don't take my experience and put that worry on yourself. I'm glad that you are worrying less these days and I encourage you to continue to work on this :) Regarding the ca125 numbers - under 30 I believe is considered in normal range. Small fluctuations are meaningless. Enjoy this wonderful news. Best wishes with the COBRA issue.

Wishing you all the best. Mary Ann

hopeful girl 1
Posts: 454
Joined: May 2010

Mary Ann:

Wow, you are a strong woman-and went thru' a lot. I am glad the treatment was sucessful for you.

I find the same to be true-my gyno oncologist is low key-and spares me the scarey details and kind of gives me the overview.

I am trying to stay calm about my thryoid worries. I am worried that it could have spread to other lymph nodes or neck, and thyroid. But I know all this worrying will not help me.

Wednesday evening is my appointment with the thyroid surgeon for evaluation. I would imagine he will need further tests though to make any further determination.

Who treated you for this? Did you have a neck/head oncologist for that treatment?

I wish you all the best, and enjoy your NED.

Hugs,
Cindy

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Thanks for the compliment - however, I do not feel particularly "strong". We are ALL STRONG in dealing with whatever comes our way - making decisions, enduring treatment and it's side effects, coping with the stress and anxiety of this illness. So I think we all deserve many pats on the back and we are all stronger for enduring, surviving and thriving despite cancer.

Who treated me? My doc referred me to an excellent radiology oncologist or whatever the term is for this. He and his staff saw me weekly throughout the seven weeks of treatment and were very accessible by phone, email, and text. Couldn't ask for better care. So again, dear Cindy, I'm sure your doc knows and only works with the BEST in the BUSINESS!! You will be in good hands and you can always get a second opinion like many have mentioned.

Keep us posted. Best wishes and prayers, Mary Ann

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