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1st appointment with Surgeon this Friday

Mollyh78
Posts: 5
Joined: May 2010

I was recently diagnosed with Thyroid Cancer and see the surgeon this Friday. I have multiple nodules on both sides, some over 1.5cm. The smaller of the large one's was the one with cancer, and I am not sure if they are taking one side or both. I am 32, have a 7 year old, and am a bit nervous about the whole thing. I also was just married 2 1/2 years ago and a couple months into our new marriage my poor hub's was diagnosed with Melanoma. He's had two surgeries since, but is cancer free as of the week I had to go in for biopsies. He's an excellent support but this is still all so stressful...especially since my numbers were fine with the thyroid.

MLG
Posts: 52
Joined: Mar 2010

I had my surgery almost 2 years ago. I also had cancer in my lymph nodes of my neck. They knew one had cancer before he did surgery along w/the thyroid had cancer. They sometimes don't know how much they are going to take out until they see it when they are doing surgery.
He ended up taking out 8 lymph nodes, 6 of them had cancer.

Mollyh78
Posts: 5
Joined: May 2010

Thank you MLG for sharing your story. I hope that you are doing well after the ordeal you have been through.

For me, they will be taking the whole thing plus the surrounding lymph nodes, but he did not feel any hard lymph nodes on Friday. How was the surgery and recovery for you? They told me I should be swollen and bruised from the biopsy for 1-2 days and I had it for two weeks. They say that I should be ok the next day after the removal of the thyroid, and I worry that it will take me longer to heal than they say. I am not sure how to feel about that. But I have to wait 6 weeks for my surgery.

nasher
Posts: 507
Joined: Apr 2010

well there are lots of questions you should be asking your doctor and you seem to have some of them already figured out

1) whats the plan for removal... partial / total
2) what type of thyroid cancer (there are a few difrent types)
3) is there a plan for radiation theropy afterwords
4) what stage is the cancer in.
i am sure there are lots of other questions i just cant think of them right now

make a list as you come up with questions and take them to the doctor.

myself i had my thyroid removed in 2 seperate surgeries since they were not sure if it was cancer or not.. it turned out to be 2 types of thyroid cancer follicular and papillary. so they went back in 2 weeks later and removed the rest. the largest on me was follicular at 7.1 cm.

we are here for support and please ask us any concerns you have. also I recomend www.thyca.org as another good site for thyroid cancer.

remember you WILL beat this and you WILL survive.

my surgeries were in febuary-march and i had radioactive iodine thropy the 5th of may and i am recovering still from that.

most the posters here seem to be all recent experiances with a few people a year or 2 out from the start of there survival.

trust me we all went through the nervous stage and we are all praying for you and are more than willing to answer anything.

also i found out that wrighting up a blog even if its just for yourself is usefull for when friends and family ask about how you are doing since you already have it sorted out and can give them a synopsis of what you want to tell them

waiting to hear how your doctor visit went and wishing for the best

Mollyh78
Posts: 5
Joined: May 2010

Nasher,

Thank you for taking the time to write and for all the incredible advice. I am sorry for what you have had to go through, but you have a great attitude that I only hope to have. I have thought about the blog, just because I have family and friends all over. And it gets pretty tiring having to repeat and re-live each moment with phone calls and emails. Did you set up the blog on here or on something like bogspot?

I am actually waiting a while to have the surgery. He did not feel any hard lymph nodes on the surface. I feel weird waiting and knowing that I have cancer in there, but he was pretty booked and we also have a trip we have been planning for 18 months coming up in the next 2 weeks. So I will wait until the beginning of July. I feel confident with the hospital since my husband goes there for his cancer checkups and this surgeon is the head of surgery and specializes in this sort of thing at a very well known teaching hospital.

It is papillary thyroid cancer on the left side, but because I have so many nodules in both, he is going to take the whole thing plus, the surrounding lymph nodes, to be sure. After that comes back then they will do the body scan and see if there are any other steps to take.

Now I wait and I hope that I do not have this consume the next month with worry and dread. I want to enjoy my family before the real work sets in in 6 weeks.

Thanks again. : )

nasher
Posts: 507
Joined: Apr 2010

i blog on my own personal website and my friends and such can click directly on it.

I also have a shortened version that i carry with me mostly for refrence on dates and medical stuff so when someone askes me i can just pull out my notes as such.

i also make a quick copy of it to my e-mail and send it to myself so again i can just do a quick cut and paste with an update or the complete listing for someone i find out i want to chat about and with

I am makeing a decent recovery and starting plans for things i can do in the future and such.

its amazing the little things that you realize are important.

oh one thing i found out is somewere between 1-5 years of being cancer free i will be able to donate blood again. I kinda feel that will be a nice way to be able to give back again once i make it there

just remember you are a survivor

sissie.updike@s...
Posts: 1
Joined: May 2010

I had a 5 cm goiter removed in Dec. 2008 and my initial biopsy (fluid drawn from my neck) said I had no cancer. When they went in to remove the goiter (removed 1/2 of my thyroid) it was diagnosed as cancer. I went right back in 2 weeks later and had the other 1/2 removed. The initial biopsy was false. I am 56 yrs old and have 2 daughters and 2 grandchildren. I have had 2 RI (radioactive iodine treatments) and the cancer returned both times. The initial surgery was not bad at all and I basically had no pain and the recovery period was short. The thing you have to watch out for is your calcium level after surgery. The doctor should give you a mega dose of calcium, as that is one of the after effects of getting your thyroid removed. I am on .137 of Levoxyl the rest of my life. I have a very positive attitute which helps a lot, believe me. Prayers truly help also. Get your name on a prayer list(s). I had blood work done on 5/18/10 and the cancer is still there. I am going to get a 2nd opinion, as I want to be aggresive in getting proper treatments this time. I was told that you should only get 500 milicuries of RI - after that it could cause problems. I have had over 200 mc presently, so I want to research alternatives to that. I hope your surgery is successful!

lynn2318
Posts: 41
Joined: Jan 2010

Hi, I am 2 yrs. post op and 1yr 3mo. out from my last RAI treatment. I had papillary and had a total thyroidectomy. What blood work did you have that showed you still have cancer? Was it a thyroglobulin level? If so what was your level if you don't mind me asking. I still have measurable thyroglobulin and it makes me nervous. It is around 2.6 I think. My endocrinologist won't say "cancer free" but I am only going every 6 months now. I had positve lymph nodes so that makes me a stage IV. I try to stay positive but there are days it consumes my every thought. I appreciate any info. you may have. Thanks

Mollyh78
Posts: 5
Joined: May 2010

Sissie, my prayers and thoughts are with you and everyone else on here. Thank you for sharing your story. This thread is amazing how we can talk about this commonality we all share and get confidence and support with it all. You have a great attitude and the right mindset to be well and get through this. What kind of cancer did they find in the goiter? Mine is papillary. I will be waiting 6 weeks for the surgery. It will be a long wait but we will be very busy to keep my mind off of it until then. I am just nervous about leaving it in there that long, but they are very positive with what they have seen so far.

FCT2010
Posts: 21
Joined: May 2010

Hi Sissie.

I saw your reply to a post which mentions that "you should only get 500 millicuries of RI - after that it could cause problems." I read in a book that this is false, that there is no data to support the concept of a lifetime limit. The book is called "the complete thyroid book" by Ken Ain and M. Sara Rosenthal, its on page 174. There's a lot of good info in the book, so I highly recommend it.

I hope things turn out better this time around. Good luck!

freedomgirl09
Posts: 1
Joined: May 2010

I had my thyroid removed May 19th, 2009. I had a 3 cm goiter and then also a much smaller one and that smaller one had the cancer. My thyroid numbers were fine also. They removed my entire thyroid. When I was out during that surgery they took samples of my lymph nodes and looked at them under a microscope for cancer. They found no cancer had spread to the lymph nodes and so did not remove any of my lymph nodes. I walked out of there cancer free. One year later I have been tested and no cancer. I take one levothyroxine pill every day and that is it. I went to a Mayo Clinic hospital here in MN. I would advise that you do some research. Make sure that the cancer has really spread to the lymph nodes before allowing them to remove them and having to go through kemo. Mayoclinic.com has good info and google thyroid cancer websites. I hope that your's will turn out just as well as mine did but it is still very scary to hear that word and to go through all of this.

MLG
Posts: 52
Joined: Mar 2010

The biopsy was uncomfortable but that was it.
My surgery I had a scar from all my thyroid taken out plus it goes up the side of my neck from the lymph node removal.
You can't see the thyroid scar after almost 2 years but the one on the side of my neck you will probably always see.
For me, the surgery was a piece of cake compared to not able to be on any thyroid med afterwards for 6 weeks.
I felt good for 2 weeks after surgery and then downhill from there. It is so hard to explain to people what you feel like while your body is slowly losing the thyroid hormone unless you've gone through it yourself.
My bloodwork has been great, with low levels, up until March of this year. My thyroglobulin is raised, which from reading, is an indication that the cancer is back.
My body scan came back clean, but my dr is having me come back next week for new bloodwork to see if the thyroglobulin has gotten higher.
I have no idea what he will want to do if it is the same number or higher.
I know this is the "good cancer" to have, but am tired of people saying that.
It still stops your life while the drs try and get rid of it, and nobody likes to feel like their life and plans has to be put on hold.
Hope things go well with your surgery.

rebeccalee170
Posts: 2
Joined: May 2010

I agree with you when you say that your tired of people saying that it's the "good cancer to have". My friends tell me that all the time, and though I know it could be worse..it's still a very difficult thing to go through. I know how you feel.

Marcy19
Posts: 8
Joined: May 2010

I also had my surgery and treatments at Mayo Clinic in Rochester, MN. I loved it there! I was diagnosed by Mayo labs from a surgery at home where I was told there was no cancer. I chose to go to Mayo after the false information was received at home. I had another surgery in May 2008 at Mayo where they removed my thyroid, 6 lymph nodes (1 with cancer) and did a complete dissection downward to be sure there was no primary source. I had a rare cancer - squamous cells on my thyroid. Mayos hasn't seen a case like this in over 25 years. Lucky me. We rented a hotel quite and lived there for 4 months taking chemo and radiation treatments. I came home in August and had my last chemo treatment near home and finished it all September. I began to feel like myself by Thanksgiving. I went back to work in January and I have been going to Mayo for continued checks. They just graduated me to 6 month intervals!! It is scary to go for those checks and not know the outcome. Thanks for sharing and it was nice to read another Mayo story.

Scared but Hopeful
Posts: 10
Joined: Jun 2010

I'm trying to understand what's happening to me??? I felt a mass in my lower abdomin and was diagnosed with an ovarian tumor. I just had a total hysterectomy on May 13 and they removed the tumor which I guess is quite rare. It's called a "highly malignant struma ovarii. The pathology report showed that the cancer cells in the tumor were thyroid. Now I am scheduled for a total thyroidectomy. They said that my thyroid shows no signs of tumors, but they will take out the whole thyroid and then I will need to go through Radioactive Iodine treatment. I'm still trying to recover physically and emotionally from my first surgery and now my thyrod surgery is scheduled for the 23rd of June. I'm just looking for a little information on what I'm actually going to go through. I just keep hearing it's no big deal.... I'm just a little scared... Trying to keep a positive attitude... I can't find any information about how soon you get the RAI treatment after the surgery. I'm just looking for a timeline of what happens when...or does it all depend? Whew...nice to let all that out! :)

jecklehyde
Posts: 33
Joined: Nov 2007

I am so sorry you are going through all of this! The best site to look at for information is ThyCa.com Usually it is around 6 weeks after your surgery that you have Radioactive Iodine (RAI) You need to go on a low iodine diet to get as much iodine out of your system. Thyroid cancer cells love iodine, so if you deplete your system and take the RAI, they will suck up the radioactivity and die.
It is not always fun, but you need to keep a good attitude. Thyca gives you numbers to call for support in your area or you can email them with questions.

Let us know how you are doing.

Scared but Hopeful
Posts: 10
Joined: Jun 2010

I'm trying to be upbeat... I had a positive attitude when I first found my tumor. First they thought it was a fibroid tumor, which is no big deal. Then they found out it was a tumor that I guess is quite rare. Figures... I never have the normal stuff. My biggest question is, I went out on Short term disability on May 13 for my first surgery and I'm not due to go back to work until June 24. But, my thyroidectomy is scheduled for June 23. I'm not sure if i am going to be able to return to work between my surgery and my RAI treatment? Can you go on and off short term disability, or does that screw it up? Or, should I just stay out until all of this is over? (Will it ever be over?) So, many questions.....

FCT2010
Posts: 21
Joined: May 2010

My boss was very supportive from day one and has told me repeatedly to stay out, on disability, as long as I needed.

My surgeries were May 3 & 17, with 2 wks of recovery for both, so I was scheduled to return to work on 6/1. I thought I'd return to work until I was taken off Cytomel (6/15) and started the low-iodine diet (6/16) to prep for my RAI at the beginning of July. However, if I returned to work for more than 14 days (which would've been the case) then I'd have to start a new short term disability claim when I went out for RAI (which would require 7 days grace period, or unpaid 7 days since I used up all my sick leave for the first surgery). You should check with your short term disability administrator to see how they deal with you returning to work then going back out a few weeks later.

At the end of May I was still needing to take daily naps (necessary for me to function after both of my surgeries), so my boss said to stay out until after my RAI, or until I was completely ready to return to work at 100%. If you can afford to stay out on disability, do it, for as long as you can - take the time off for yourself. I asked my ENDO if he could keep me out until the end of August with the option to go back earlier if I felt I was strong enough to do so, and he was agreeable to that. All I'm saying is ask for as much time off as you need, and use it to fully recover and regroup, do whatever you need to do to feel whole again.

Scared but Hopeful
Posts: 10
Joined: Jun 2010

Thanks for the info. That really helps... My boss said to take all the time I need, but when your out, there's always someone covering for you and I feel bad that they have to cover my position. I'm just afraid to go back and not be able to handle it. My first surgery was very hard on me and I know this one won't be nearly as physically draining, but it's the RAI that really has me scared. My first surgery was a total Hysterectomy because the tumor was on my ovary. But I'm 51 and you just don't bounce back from surgery like you used to. Now looking at a total thyroidectomy and hearing how tired you get, I'm just in a panic... I have great support at home. But, I'm a doer and I'm going crazy sitting around doing nothing all day. I have that tendency to always do more than I should and then I pay for it. I still haven' fully recovered from this surgery and I'm looking at another one on the 23rd. EEEEK!!!! Do I sound like I'm wining... It's just easier to vent here instead of to my family. Even though they don't mind, I feel they are going through enoungh. They are soooo worried about me. I have total faith that I will beat this, but my doctor made it sound like I'd got through the surgery, take a pill once a day after that and everything would be peachy... but the more I read from people actually going through this, it's not so easy. Am I getting all worked up for nothing? I'm just trying to prepare myself!

FCT2010
Posts: 21
Joined: May 2010

Well, you'd be covering for someone else if they were out for the same thing, and its part of our jobs to cover when someone is out. You have a very valid reason to be out, so please try not to feel so guilty about it. Take the time off and take care of yourself.

I got ahead of myself many times too going into my first surgery. It is good to be prepared, but you don't want to psych yourself out either. Use what you read on the forums to ask the right questions when you are talking to your ENDO about the RAI and follow up treatments if they are necessary. I know, my ENT said the same thing - "you'll take a pill for the rest of your life." And we all will have to since we don't have thyroids anymore, but that's the simplistic result of what we go through w the surgeries and the RAI. It's just the getting there that is tough. But that's why you need to take the time to make sure you heal and recover fully, so you are ready for the next surgery (you said you have another one already set up for the 23rd, or is that your thyroid surgery?), and you can conquer any RAI side effects you may encounter. I'm counting down the days to when I stop taking Cytomel and start the low-iodine diet (5 more days). It seems major now, but once my RAI is over, I'm sure it won't seem so bad several months from now.

Since you are a doer, you have to learn to let up on that while you are recovering from surgery. Ease back into things after the surgery. I didn't want to do anything for the first couple of days because my neck was so sore so I slept a lot. After the second surgery, I felt more confident being outside and trying to be normal, but I still took my daily 3 hour nap. Like I said, take the time off and really take care of yourself.

Good luck!

Scared but Hopeful
Posts: 10
Joined: Jun 2010

I know I was getting a little ahead of myself. I am scheduled for the total thyroidectomy on the 23rd. But I have an appointment with my endo Dr on Monday, so i'm going to take a list of questions so I can ease my anxiety. I really appreciate the input. It really helps alot to talk to people going through the same thing. One day at a time I guess. I'm so used to being the care giver, I'm just not used to taking care of "ME".... Thanks again for the support. Good luck with the RAI.

grateful1
Posts: 81
Joined: Jun 2010

I GOT MORE THAN ONE OPINION. I SAW THREE SURGEONS--THE FIRST WAS A HORROW--THE OTHERS GREAT

grateful1
Posts: 81
Joined: Jun 2010

YOU WILL FEEL COMFORTABLE WHEN IT IS THE RIGHT SURGEON. DO YOU KNOW HOW TO MAKE A POST HERE

Lynne3
Posts: 1
Joined: Sep 2013

Hi

I found this site today, fortunately. I am a soon to be 60 year old woman who had an enlarged ovary with a tumor and a cyst.

On July 25, 2013, I had both my ovaries removed. I was diagnosed with malignant strumi ovarii.

I thought all was over.......

Then I saw the endocrinologist who told me that I needed to get my thyroid out, even though it was clear.

I have to see the surgen next week. I will also have to have the radioactive iodine.

After doing research and taking with many people, I think it would be a waste of time to even get another opinion.

This very unusual thing seems to have one cure.

I was so glad to see your post. Please tell me what happened.

I hope you are doing well.

Much thanks

Lyne

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Lyne,

Why are they taking your thyroid out "even though it's clear"?  If the doctor doesn't have a good reason, then you should seek a second opinion before you submit to surgery.  Even if he does have a good reason, you still might want to get a second opinion, someone other than the surgeon he referred you to.

Alan

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