Partial thyroidectomy good results

[Maz1964]

Hi Great news, received a letter this week following surgery that no cancer was found in my thyroid which the letter said "was reassuring" which was quite strange wording. I would like some advice please as I have a post surgery appointment with the surgeon on 14 November and I really would like to know what sort of questions I need to ask. The right side of my thyroid was removed due to a large nodule and my sister had thyroid cancer 7 years ago but she lives in Australia where they seem to be more forthcoming re follow ups. Prior to surgery the surgeon said that the left hand side would take over thyroid production and I wouldn't need medication unless they needed to remove the left side if cancer were found. should I there be blood tests to check when I have this appointment? If so what tests? My original scan also showed small cysts on the left side but the Dr said not to worry about th as they were small but shouldn't there be some sort of monitoring in the future? I just want to make sure I ask everything I need to as I have a feeling it will be my only chance with the doctor at the hospital. I feel truly blessed to have had this result. thank you in advance

[Tamzin27]

Hi Maz,

Glad your surgery went well and it histology came back as benign. I had surger 7 years ago and had the left lobe of my thyroid removed for benign nodules. I didn't take any replacement hormones until this February. The remaining lobe compensated and worked well for 7 years. It will all depend on how well your other lobe is doing. I didn't have any nodules on the remaining lobe 7 years ago, but they found multiple nodules on it this year. If I was you, I would ask for the endocrinologist to monitor the cyst on your remaining lobe and depending on size, to ask for a biopsy at a later stage. If there was any cause for concerns they would have removed it at your surgery.

By the way, I am having surgery to remove the remaining lobe this Thursday. So, my body will have to learn to live without a thyroid. How has your recovery been? Did you have any complications after surgery?

Use some Bio Oil (bought mine from Asda) on your wound when it's dried. You can hardly see my scar from my previous op. Bio Oil is very good. Just massage it gently, only when it's dried though.

Look after yourself.

Tamzin27

[Maz1964 in reply to Tamzin27]

Thank you and it does seem that the monitoring had worked for you. I have recovered well from surgery and the scar is already great...I think being early 50's without the perfectly smooth neck is an advantage! it had been 3 weeks and I went back to work after 2 weeks but I must admit I am fairly tired this weekend. it's strange that bits of my neck hurt one day then are ok the next day and a different bit hurts or is numb and tingling, not really sure how it should feel. hope your surgery goes well...please let me know x

[mrsm49]

I've had a total thyroidectomy (due to retrosternal multi nodular goitre) my sister had half her thyroid removed, neither of us had any cancer cells when biopsied again during op. She only had half removed as her endo said she has young children so best to hang onto what she could for as long as possible. I now agree with this as two years post op, getting optimally treated for me has been a nightmare as they prefer to go by bloods and not symptoms. It's a continuous argument to get my prescription which I could do without although I appreciate that 80% are happy with their medication just my luck to be in the dodgy 20%!! My sister also 2 yrs post her hemi thyroidectomy is still ok without medication.

Prior to my op when I first found a lump, despite the negative biopsy they wanted to operate , I declined and insisted on annual scan and biopsy. This was ok for three years and then it started growing under my sternum so had to come out. I'm glad I did this now but it's an individual decision that only you can make.

[mrsm49 in reply to mrsm49]

Meant I'm glad I delayed and insisted on regular checks x

[Maz1964 in reply to mrsm49]

Thank you and it does seem that people have problems receiving the meds they need post op which is why I want to be prepared when I see the surgeon for the scheduled post op appointment. I'm not sure whether or not they will give me blood tests as pre op he was so positive that the remaining lobe takes over when one is removed which of course I really hope happens. thanks again x

[Tamzin27 in reply to mrsm49]

Hi! May I ask if they knew it was retrosternal before the op, or did they found out during the op? Did you have any symptoms prior to your op? I'm having a full thyroidectomy on Thursday and part of me think it's retrosternal. I only think so because of the pressure on my chest. I have been coughing a lot and bringing up sputum. Sometimes sputum and cough is due to tracheal deviation which I have.

[mrsm49 in reply to Tamzin27]

Hi Tamzin, They saw it was retrosternal in last scan as the radiographer guy called me over to the screen to show me. However the report that reached the surgeon was "no change fm previous scans" This meant they were surprised during my operation which went on for far longer than planned thereby really worrying my hubby!! I was very sick after operation and they said it was because of blood going into stomach. Apart fm that I was really ok, hardly any pain (only pain was in my back fm being in awkward position during op) and I've got a great scar thats barely visible. Don't forget to rub bio oil or equivalent into scar once it's healed up. It's the massaging effect that helps and keep out if sun or use highfactor for 12/18 months

Tip- take some water bottles with you on Thursday and some ginger biscuits. You'll be fine im sure. Xx

[Tamzin27 in reply to mrsm49]

Thank you mrsm49 for being so honest. For me I find it more reassuring to know everything. I have more problems when lying down and as you say it comes and goes. I'm also suspecting that mine is retrosternal only based on what I've read. I'm glad you are on the mend. Thanks for your advice. I've already bought a bottle of Bio Oil. I swear by Bio Oil as my scar is hardly noticeable. And the surgeon said he'll try join the old scar line so it's a neat line. Take care. You have been very helpful. X

[mrsm49 in reply to Tamzin27]

Oh yes I did hve swallowing problems and pressure feeling prior to op but as those symptoms came and went they ignored them until scan. They were always trying to get me to consent to operation I only said yes based on what the radiographer showed me, I never realised they hadn't got that info at the time!

[Firinne]

I had exactly the same experience as you nearly 4 years ago, Maz. My surgeon also said the small nodules in the remaining side didn't need monitoring. I do have a feel there sometimes, to see if there is any swelling but I'm not aware of any changes....

In my case, the remaining thyroid didn't produce enough hormone but I have managed fine on 50mcg of levothyroxine ever since. I've recently had a blood test and my TSH was actually slightly better than last time, a year ago. It is higher than 'optimal' but still within range and I feel OK so am going by that.

The blood tests I had, 6 weeks after surgery (as I recall) were TSH and free T4. TSH was rising, I had another blood test a few weeks later and it was still rising so was put on levothyroxine (T4)

It's such a relief to be told there's no cancer, isn't it? I was told by my surgeon a couple of weeks after the op and was so emotional I burst into tears, which seemed to startle him lol. I'd got myself psyched up for bad news so emotion got the better of me

[Maz1964 in reply to Firinne]

Hi and thank you, did you have any symptoms that your remaining lobe hadn't taken over fully ? I have been so stressed out I can't believe it...I've just signed up for a mindfulness workshop! The surgeon promised to call me with the results good or bad and when I chased up I was told a letter was in the post and he shouldn't have said he would call as they weren't allowed to give results over the phone. When I opened the letter I couldn't believe it as I was so certain I was getting bad news. currently I am really tired which I think is a result of the stress I caused myself . it amazes me when they are shocked at how stressed and tearfull this makes us. whilst I don't want to be cross as I am so grateful for the results I got the date on the letter was 9 days before it was actually posted. x

[Firinne]

Hi Maz - yes, the stress is immense! I thought I'd coped really well before the op. I felt re-assured that, even if it was cancer, thyroid cancer is slow growing etc etc - I actually was very surprised at the emotion I felt, when I was given the news in the surgeon's office. It must have all been going on subconsciously and surfaced when the news was good and not bad, as I had been expecting. (I actually jumped up and hugged the surgeon with tears streaming down my face, no wonder he was startled lol)

As for symptoms, no I didn't have any but I was put on levothyroxine pretty quickly, really (after 2 blood tests, when it became clear my remaining thyroid wasn't going to produce sufficient thyroxin) so that was a good thing. I think my TSH had gone up to about 6. something, so probably not high enough or for long enough to cause symptoms.

Looking back, I do think my large nodule was probably doing odd things - I remember getting terrible palpitations.....maybe surges of thyroid hormones, i don't really know.....I'm pleased I had the op. - you will settle down, don't worry. And maybe your remaining thyroid will provide sufficient hormone so that you don't need extra. I wish you well, Maz.

[Devonlaraa]

I had a partial thyroidectomy in December and then a total one in February this year. When I see my surgeon he's mainly worried about how I am healing and If I've had any cancer spread anywhere. If you are having symptoms of hypothyroidism the surgeon will obviously be able to help you but they will probably tell you to go to your gp.