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bhgymteach · 11-01-2006, 07:59 PM

Ugh!
I am not happy about this. I went back to the ENT on Friday after an u/s the week before. He immediately told me that it wasn't good news. My cyst is 5cm, by 3cm, by 4cm. He said the size is his concern and he is pretty sure that it isn't cancer since FNB came back negative already. He just wants it out to be sure. Otherwise it is back every 6 months for the rest of my life and always "wondering" if it could be cancer.

I am scheduled for Tuesday, Dec. 18th. I am doing it the week before Christmas because I am a teacher and hopefully the extra holiday vacation will help me to rest and relax enough to get back to school sometime after the first of the year.

I am scared to death of course, but he is telling me that taking the right lobe shouldn't be too much of an issue and he really thinks I won't need meds. afterwards. I should make him promise I guess. Just kidding. I know there are always issues and if they can happen to me they usually do.

I would love to hear success stories from those of you with just one lobe removed.

Thanks!!
Barb

California Ann · 11-01-2006, 11:42 PM

bhgymteach,

I am new to thyroid problems and this board. Most of what I know I learned here.

I had been being followed for a left side multi nodular goiter and then I came down with thyroiditis on the same side. I had fine needle biopsies on both sides that were inconclusive. My PCP and my endo desided it needed to come out. Well the surgeon said only the left (not the side I was having trouble with) needed to come out.

We live 170 miles from the hospital and were going camping anyway. So we went camping on Wendesday and were only about 70 miles from the hospital. We drove to the hospital early Thursday morning. I sent my husband back to our trailer and friends. The Dr. called him when they were finished. I spent one night in the hospital. Only because we live so far away. I had no problems the surgeon did not damage or nick the parathyroids or my vocal cords. I took one Motrin (at the nurses insistance) Thursday night and went back to our camp spot Friday morning. Friday afternoon I went for a walk around the ranch where we were camped. We spent the next 3 days there and then went home.

I have not had any other problems or any pain. I am pretty active. Even with the fatige with the thyroid problems and trying to get the medication dosage
figured out. I am in my early 50's and I attend aqua arobics 5-6 days a week.
I was back in the pool in less than 2 weeks. Even on my bad days I get in the pool. It just makes my whole body feel better.

I know how scared you are and nothing anyone can say will make that any better. Just learn as much as you can and don't be afraid to ask questions.

Good Luck all our thoughts and prayers will be with you.

CA Ann

ychonks · 11-02-2006, 05:43 AM

Barb,

I had a right lobectomy on August 24th. I had a nodule present with suspicious hurthle cells. I was at the hospital at 5 am and left that same day around 3 in the afternoon. The worst part was coming right out of surgery, still being wheeled to the recovery, b/c your throat is soar from the tube that they put down it. But they gave me meds and I fell right back to sleep. I slept most of that day and than remained in bed for the next two days. Surgery was on a Thursday and by Saturday I had to get out. I just went to the store and I did feel a little light headed and tiered (got someone else to drive). I went back to bed for the rest of the day but Sunday I was up and at it again and by Tuesday I tried going to work. Which I did, for a about 4 hours. By the end of the week I was back at work with a pretty cool scar!

Since than, because of the results being positive for papillary cancer, I had a rollercoaster of a time....emotionally. But now I am back to my life and cancer free. After the surgery I felt like myself and my TSH levels actually continued to be within the range. Preop 1.2 and Postop 3.2. I was only put on 50mcg's about a week ago to suppress my left lobe. I opted to not have a TT and pray that nothing reoccurs! But I like to think off all of this as a success story!!

Good luck with everything! And let me know if you have any questions!

Yvonna

Oleander53 · 11-02-2006, 03:47 PM

I appreciate hearing these experiences because it was suggested to me to have my right lobe out and biospy the left one while in there. I am being watched and suppressed for now but..I know it is still a possibility for me.

Ychonks....Did you have to have any other treatment after your results came back...Did they ever say you needed to remove the other lobe?

Thanks, Oleander

LisaBob · 11-02-2006, 04:44 PM

I had both out - 3 weeks ago tomorrow - and it was really really easy! I had an appointment with my surgeon today and he cut me loose (unless I grow something else somewhere in my body).

Good luck to you - please don't be worried!!! You will heal in no time!

Lisa

Red Maple · 11-02-2006, 05:23 PM

Barb, like everybody else, I wish there was something I could say that would make you less scared and worried. I had a right lobectomy about 4 years ago, due to a suspicious nodule. No it wasn't the most pleasant thing I have ever done, but it was by far not the worst either. Surgery is never fun. I was scheduled for surgery at 3 PM on the Friday prior to Labor Day four years ago. I went in around 1 and they got me ready. I had the surgery on time and had an over night stay for observation. At first when I came out of recovery, it was painful, but they gave me a shot of demerol and I fell back to sleep. Of course the pain went right away with the shot. Later that night the pain wasn't so bad and I only needed pain killer pills (they gave me percocet) to be comfortable. A hospital stay wasn't so bad, the nurses were wonderful and I almost felt pampered. It was great to have an overnight stay just to rest and have somebody to take care of me. If it wasn't for the frequent needles for blood tests I might have actually enjoyed it since I was so sleepy and "floaty" because of the meds. I went home the next morning. Since it was Labor Day weekend I had an extra day off work for recovery, but went back to work the day after labor day. For the first few days I only worked half days, and went home to rest in the afternoon. I was back to my old life within a week. I did need replacement meds however, and it took a little while to get stabalized on a good dosage. But all in all, the whole thing was pretty simple.

Good Luck to you. I am glad I had it done and over with. Hopefully yours will be an uneventful as mine was. Let us know how it goes, and feel free to ask any questions you may have. We'll all be rooting for you!

bhgymteach · 11-02-2006, 05:33 PM

Thank you all for the words of encouragement. You are the best!!
I feel better just knowing that this isn't the end of the world. Right now it does feel like it. Haha.

I would like to know how they regulate meds. after they remove only one lobe? Do they wait and see what happens or immediately be proactive?

Barb

ychonks · 11-03-2006, 05:33 AM

Quote:

Ychonks....Did you have to have any other treatment after your results came back...Did they ever say you needed to remove the other lobe?

Oleander,

No. I didn't recieve any other treatment post surgery. The tumor didn't metastasize into my lymphnodes or distally. I was lucky. Because of the fact that it was encapsulated and unifocal it was a very good prognosis. I did spend a month getting second opinions and yes every endocrin I saw suggested aggressive therapy (TT and RAI). But they just suggested and didn't demand that it be removed. My number one question was "will I regret not removing the remaining part of my thyroid in the future?" All of them said NO! So, about two weeks ago, 2 months post surgery, I was put on 50mcg of Levoxyl to suppress the left lobe. I will continue to be monitored bi-yearly and I feel very confident in my decision.

Thanks for asking.

Yvonna

Quote:

bhgymteach
I would like to know how they regulate meds. after they remove only one lobe? Do they wait and see what happens or immediately be proactive?

After the surgery I felt like myself and my TSH levels actually continued to be within the range. Preop 1.2 and Postop 3.2. I was only put on 50mcg's about two weeks ago to suppress my left lobe. In about another four weeks I will have blood taken to see where my TSH level is. I believe that the optimal level would be .5. I am of course taking Levoxyl in the hopes that my left lobe will not form nodules.

Yvonna

Oleander53 · 11-03-2006, 06:42 AM

Yvonna, thanks and keep us updated........ I may call on you for more info in the future if you do not mind........... Oleander

Red Maple · 11-03-2006, 09:06 AM

Barb, concerning regulating meds. In my case they had already put me on 100mcg of Synthroid prior to surgery since my TSH was at 38. I continued on that dosage after surgery. I saw my doctor frequently (every 6 weeks) for several months to adjust my replacement meds dosage. It takes a little time and tweaking to get just the right dosage that YOU feel good at.

Since then, for the most part I'm feeling pretty good. I don't think I will ever feel the way I did prior to surgery. That's not a negative thing though, I don't feel bad and continue to live a very active life, it's just a little different now. But then I'm 53 and also menopausal, combine that with hypothyroidism and of course I'm going to feel differently.

Your doctor will probably want frequest blood tests also following your surgery to help you settle into a good dosage of replacement meds. based on any hypo symptoms. Just a note though, be sure to get copies of your lab reports, rather than just accepting an answer of "normal". If you have lingering hypo symptoms be sure to discuss them with your doctor eventhough the lab reports say "normal". There are many options, and several replacement meds available. But you don't need to worry about that just yet, get through your surgery first. Based on my own experiences I would guess you would need a small dosage of replacement meds. But that's something you and your doctor need to address after the surgery and you have lab work done to know what your remaining thyroid is actually producing. Some people are fine with just the remaining half of the thyroid. For now just get to feeling better from surgery and then address the meds issues. There are many people here who are very well versed in stabalizing meds. and all of us will help you.

EmsMommy7 · 11-03-2006, 04:43 PM

Hi Barb,
I haven't signed on in a while but wanted to stop by and see if I could find any posts from you. Disappointed to see this one. :-( I'm sorry you have to have the procedure. I really hope it goes well and you have some relief from this. I'll be checking up on you.

As for me, my cyst DID come back... a third time.... though not as big, and right now I'm just waiting to see the Endo in December. I'll be in touch, and I'll be thinking of YOU!

Take care,
Nancy

bhgymteach · 11-03-2006, 05:38 PM

Thank you for checking up on me Nancy! I appreciate you thinking of me.
Yes I am not happy about the whole idea but I think I will be relieved when it is gone finally.

Barb

ncmtgl · 11-04-2006, 06:25 AM

Hi bhgy, I am facing the same thing, thanks for writing this and thanks to all for her good replys you gave her, you have also helped me. My surgery isn't scheduled yet as I said before I am going to see 2 more Drs.
Norma

Jenny C. · 11-04-2006, 07:25 PM

Hi Everyone!! I just read what Barb is facing...I am facing the same thing BarB, so we will be in this together!!!!!!!

My surgery was scheduled for TODAY, and they post poned it for this coming Friday...this feels like an eternity..I will BE SOO HAPPY, when this is ALL behind me:

Barb, I am SOO HAPPY, I read your post, and ALL the WONDERFUL people who have been through the same thing, and have all come out well.
THANKS GUYS!!!!!! ALL OF YOU HAVE MADE ME FEEL BETTER TOO. SO THANK YOU...I am just a complete basket case, right now...
I just need to know everything will be OKAY...so by reading all of your posts, I am encouraged...this is really a scarey time, and I am soo thankful, I have these boards to read, and read that there are many people who have gone through the same thing, or going through the same thing right now, as me... it has really helped me cope with this...I am reading these boards everyday, just to get re-encouraged...SO THANK YOU GUYS FOR ALL OF YOUR SUPPORT, WITH BARB, AND WITH ME!!
GOOD LUCK BARB, PLEASE KEEP ME POSTED, I WILL BE PRAYING FOR YOU..
God Bless Everyone on this board, you are ALL WONDERFUL PEOPLE!
Jenny

bhgymteach · 11-05-2006, 12:33 PM

Jenny,
Good luck to you on Friday. I will be thinking of you!
Please let us know how you are when you get a chance.
What do you have, nodules or cysts? Are you expecting a right lobectomy?
Do you expect to have to take meds. post surgery?

Barb

Jenny C. · 11-06-2006, 06:32 PM

Quote:

Originally Posted by bhgymteach

Jenny,
Good luck to you on Friday. I will be thinking of you!
Please let us know how you are when you get a chance.
What do you have, nodules or cysts? Are you expecting a right lobectomy?
Do you expect to have to take meds. post surgery?

Barb

Hi Barb,

Sorry for my delayed response..I haven't been online all day today..busy, busy!
First of all, THANK YOU FOR YOUR SUPPORT, ON FRIDAY!!! I am VERY NERVOUS, I just keep praying everything will be OKAY

I have ONE nodule, that is 2.5 cm in size. I was diagnosed with this back on Sept. 22...I was having difficulties swallowing, and this is what led me to the Dr.s, they ran a CT scan, and a sonogram, right away.
They told me it was right around 2 cm in size, maybe a little bigger, at that time... but the MIDDLE WAS SOLID, and there was a cyst around it.
Well they did the Fine Needle Biopsy, and it came back Benign....then I went to a ENDRO, and he wanted the same sample from my FNB, to have his hopsital's pathologist read it.... and their pathologist, said, it was Benign, but ALSO INCONCLUSIVE....Too much Blood in it to get an accurate reading.
I maybe already told you all this in my last post to you...NOT SURE..

If I am repeating anything..I apologize.
Anyways, Long story short....they told me the only way to know if IT ISN'T CANCER is to remove my RIGHT LOBE....so that is what I decided to do.
They did just repeat the sonogram, last week, and said, NOW THE WHOLE thing is SOLID...there is NO CYST ANY MORE....and it grew .2 mm, which is VERY TINY amount of growth...but it is still growing.
Now it is measuring 2.5 cm....SO I am HAPPY they are taking it out....I will drive myself crazy, wondering if it is cancer...I need to settle this in my mind, and move on.
As for medication, afterwards, he told me, as long as I still have my left lobe, that 4 out of 5 people NEVER have to take meds...that the OTHER side will pick up and do the job that both would normally do.
So that is GREAT, to know that...but he said, it is a POSSIBLITY, that I may need meds, but he likes to wait on that, and see if the other half will start to work.
Now, if he would need to remove my whole thyroid, then I WOULD NEED MEDS, He said, while I am in surgery, they will remove a section of the mass, and biopsy it right there...IF it looks to be cancer, then they will remove the whole thyroid, but he said, it can still be missed even in the operating room...so there is a chance, I may find out a week later, and have to go back into surgery...SOO there are ALOT of possiblilities, as to what can happen..BUT I am TRUSTING GOD, will do what is BEST!!

I wish you THE BEST OF LUCK TOO...I will DEFINITELY KEEP you posted....I KNOW HOW SCARED YOU ARE...I AM RIGHT THERE WITH YOU..SO WE CAN GO THROUGH THIS TOGETHER.
PLEASE feel free to write me anytime.
Take Care, and Thank You AGAIN, for your support, and I will let you know how everything goes Friday!!
Jenny

bhgymteach · 11-06-2006, 06:46 PM

Jenny,
I am being told the exact same thing as you about the meds. The meds. themselves don't worry me but getting them regulated does. I also will have one lobe out and frozen section taken while on the table. Ugh! I am in PA and I am confident that I have found the best drs. in this area. So now we just have to pray and get this over with. Please post as soon as you feel up to it. You are in my thoughts and prayers.

Barb

Jenny C. · 11-07-2006, 04:45 AM

Quote:

Originally Posted by bhgymteach

Jenny,
I am being told the exact same thing as you about the meds. The meds. themselves don't worry me but getting them regulated does. I also will have one lobe out and frozen section taken while on the table. Ugh! I am in PA and I am confident that I have found the best drs. in this area. So now we just have to pray and get this over with. Please post as soon as you feel up to it. You are in my thoughts and prayers.

Barb

Thank You Barb,

I am in Pa, too....I feel I found the best DR. too, HE CAME HIGHLY RECOMMENDED...They say we have the BEST hospitals around here.
If you don't mind me asking, what part of PA....Wouldn't that be weird if we had the same Dr.

Good Luck to you...I will keep you posted!
Please Keep me posted with you!

Red Maple · 11-07-2006, 10:51 AM

Jenny and Barb, just a word of reassurance again. I had the very same thing with a suspicious nodule four years ago in the right lobe. My nodule was about 1.5 centimeters, solid, and the FNA came back indicating "type A, pre-cancerous" cells. They did the section biospy thing on me also while in surgery to see if the whole thyroid needed to come out, but it was "suspicious, but not malignant", so they left the remaining lobe. When the full biopsy came back the following week, it indicated that cells had some follicular architecture with scant colloid, and hurthle cell changes, but no definate malignancy. I'm at work right now, and don't have the actual lab result in front of me so the my medical terminology probably isn't perfect. My doctor said that in layman's terms that it meant that mine was probably in the last stages of "pre-cancerous" and most likely would have become malignant. Even if a malignancy was found, thyroid cancers are usually slow growing, very treatable, with good survival rates. My doctor monitored me very closely, for the first three years after surgery, and NOTHING returned that could even be considered suspicious. I had to go in for sono's every 3 months the first year after surgery. The second and third year every 6 months, and now only once a year! I am on meds. though, I also have hashi's so the other side of my thyroid doesn't pick up the slack in producing enough thyroid hormone. Even the meds are really not so bad, and I don't mind taking them for the rest of my life. A simple small pill each morning and I feel pretty good for the vast majority of time, occasionally I have some symptoms, but am SO VERY GLAD TO HAVE THAT NASTY NODULE OUT, I am happy to take a pill daily!

Sorry this has gotten a bit long, but really wanted to re-assure you both that everything will probably turn out just fine. My surgery experience was the very best as could be expected, surgeries are never fun. In terms of really serious problems though (ie breast cancer) we are all lucky to have something fairly simple, and I am very grateful for that. Best of luck to both of you, I'll be thinking of you as you go through your surgeries, and will say an extra prayer in your behalf!!!

June Tyson · 11-07-2006, 03:10 PM

I had tt surgery September 18th and had no problem. Was in the hospital one night and at the insistance of my daughter went to her home (I'm widowed) and spent one night and next day I went with her to grocery store and she brought me home. I never took a pain pill, never had nausea. My pathology report was papillary cancer and I've been through the RAI and full body scan and waiting now to hear from that. I started the meds that I will be on the rest of my life and so far so good. I know the fear your going through I think we all do, but try not to worry, there are more people that do very well with the surgery than those that have problems. Remember there could be a lot worse things for you to go through. Good luck and God Bless.

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