Total thyroid removal

[14Jane]

A couple of months ago to my horror I discovered a lump on the left side of my neck and when examined by the doctor was told it was probably a cyst on the thyroid.  A scan found a 2.9cm nodule in the left lobe and a couple of tiny ones in the right.  A FNB was inclusive so as a precaution I opted to have the left lobe surgically removed.  When this was biopsied during the operation the result was again inconclusive so the surgeon stopped at the left side and did not remove the right.  A week later 4 pathologists were unable to come to a conclusion so they outsourced it to be biopsied by another pathologist.  The result came back positive but borderline - 4mm over.  Now I am wavering on a decision whether to have the right side removed as well.  The surgeon says there is no urgency to have it done as the findings were in the left side(and were contained) which has been removed.  However I have read a bunch of horror stories on this website about calcium levels and side effects after the operation as well as the difficulty of getting the replacement levels right.  I would appreciate your advice

[14Jane]

My ENT surgeon informed me yesterday that even if the right lobe showed no nodules he would still recommend its removal because of the size (2.9cm) of the nodule in the removed left side.  Apparently this is to ensure that there are absolutely no stray cells left.  I am going with his advice as I definately want peace of mind.  There was no spread to the lymph glands and no damage to the parathyroid glands.

Thanks to you all for your input and stay healthy.

Jane

[Migueleto]

I just received the result of my recent second surgery that removed my right thyroid. The pathology report shows no cancer cells and also nothing on nearby tissues. Despite of the negative result, I've no regret for having it removed. Keep fighting.  

[MANmom]

Well, I can tell you that had I listened to my Endo and not had the other side removed, I wouldn't have found the biggest tumor I had.  I had four nodules, three on right, one on left, the three on right all solid, left one was mixed.  All had vascularity, the left one was 1.6 cm, the biggest one on the right 2.1 cm.  I was having vocal difficulties and swallowing issues, plus numerous other issues, all blood work was normal except I had Hashi's.  They removed my right side, there they found three micro-tumors, none bigger than 2 mm.  The surgeons all said take the rest out, my Endo looked at it again on ultrasound and said there was no need to remove the other side.  Since Hashi's was going to destroy the thyroid anyway, I chose to have the other side out...they found a 1.5 cm tumor there.  Good thing I listened to the surgeons...If you have good parathyroid function after the first surgery you should be fine.  Apparently one parathyroid that functions is enough.  I never had trouble with my calcium.  It took about 6 months after RAI to get me on the right dose of synthroid, now I feel like I did before, maybe better.  I am not saying that you will find more cancer on the other side, but I do think you can live just fine without the thyroid, most of us do...and since you have a functioning parathyroid, why take the chance?  Just my two cents, good luck!  By the way, if you have any siblings, I suggest they be tested too, my sister had a cancerous tumor the same as mine, she never would have known...I have two brothers who had Hashi's and are on meds, and my other sister has nodules that are being watched.

[Migueleto]

Back in 2008, my calcium rose to 10.4 which is past the bordeline of 10.2. Besides the tumor they discovered on my left lobe, they suspected my parathyroid as well as having adenoma. My endocrinologist recommended having my parathyroid removed as well, but during my surgery, the surgeon discovered that there is nothing wrong with my parathyroid so he left them there. I had three blood tests done right after the second surgery and at present my calcium level has gone down to 9.5 which is within the normal range. I'll keep you posted on my RAI.
I'll pray for you.    

[14Jane]

Thank you for your input.  Did you have experience any lack of calcium issues?  I would also appreciate it if you could let me know how your RIT goes as I will probably have to follow that route if the right lobe is removed.  Incidently the surgeon is scheduling January to have the surgery done.  I felt fine after my surgery on Sept 20 but now three weeks later find myself extremely tired by the end of the day (I work a 40hr week and went back to work 10 days after surgery).  I am normally an extremely active person and am hoping that this tiredness will be temporary. My scar is very hard to the touch and still swollen as is the area directly below it.  I also still have numbness under my chin and around the scar.  I don't mean to sound like a moaning minnie - but fear of the unknown is not that easy to deal with.  Best of luck with your ongoing treatment.
Jane

[Migueleto]

My advice to you is to be aggressive and have the other lobe (right side) removed as well. I had the same experience. My left thyroid which had a diameter of 2.9 cm. was surgically removed last May 30th 2010. The pathologist in the hospital was also inconclusive and sent the tissue to Mayo Clinic for further analysis. It came back positive - Papillary Cancer with 2 microscopic cancer cells. I seeked second opinion but the only recommendation I obtained was to remove the right lobe as well which I did only last Oct. 3rd 2010. Because of the absence of the thyroid, I'm now taking thyroxine ( 75 mcg) on daily basis. No significant side effects are being felt by me. I'm due to return to work on Oct. 20th. Within the next 2 months, I will undergo a Radioactive Iodine Therapy and some body scans later. Jane, I'm not an endocronoligist or a surgeon. I'm just sharing you my experience. While your still having the right lobe, it will always bug your mind as to whether to leave it there or have it removed. My recommendation is to have it removed judging from the result of your first surgery. Good luck and take care.
Migueleto.        

[gimel]

bump