Going into surgery, I really had no idea what to expect. No matter how many questions I asked of my surgeon, I could never quite pin him down to how much recovery time I would need after surgery. I understand all people heal differently, but I’m a planner and I have kids that I needed to schedule help for. So I am going to share my Thyroid Cancer Surgery Recovery story in hopes that I can help other’s like me, who want an idea of what to maybe expect. Just note, this may not be what your story looks like.
One of the very first shocking things to discover about my Thyroid Cancer surgery (way easier to say than Radical Modified Neck Dissection – a.k.a. removal of my whole thyroid and many of my lymph nodes in my neck) was the amount of wait time to get into surgery. I was diagnosed in March 2015, but not scheduled to have surgery until mid-May. I am pretty sure one of the hardest parts of surgery was the waiting period. “Hi, you have cancer. We are very sorry. But we will not be removing it for two months.” That was hard to swallow for me. Not to mention the draining fatigue that came with the waiting and cancer. It was worse than early-pregnancy-tired!
But the waiting time helped me PLAN!
I am incredibly lucky to have had a large rally of people support me and help me function through the whole process. From people willing to step in and watch my kids when I was too tired to play or recovering from surgery, to people setting up “Bring a Meal” sign up forms for me and those that “babysat” me after surgery, there are too many people to thank.
I was in the hospital for roughly 3 days after surgery. This may be longer than others, as I was having a really hard time not throwing up all the pain meds they were giving me (umm.. throwing up after major neck surgery.. not fun!). After going home I scheduled to have my children go to grandma’s for about a week. I’m a single mama, with small children, young enough they don’t know that hugging and kissing mommy’s boo-boo would be painful, not helpful, so to grandma’s they happily went! Knowing that I was going to have multiple medications to juggle and a rough time getting up and out of bed, I planned to have babysitters to watch me for about a week.
Friend’s volunteered to stay overnight and manage my meds, warm up meals for me, force me to eat, get me ice, and help me entertain my stream of visitors for about a week to ten days after surgery. The “Bring a Meal” sign up page was a life-saver in the sense that now the ‘babysitting’ friend didn’t also have to worry about grocery shopping and cooking.
I highly recommend using a site like: https://www.takethemameal.com/ to set this up.
Another huge recommendation I have for post-surgery: use a white-board marker to write on a bathroom mirror, or write out on paper all of your medications and when/dose to take. I found that when I was really tired, or woozy from meds, or my ‘babysitters’ were switching out, meds got really confusing. “When was the last time I took my calcium??”
Speaking of calcium, if you ever notice post-surgery that your lips tingle or your hands feel numb (I described it as my hands feel like I have mickey mouse gloves on or they are swollen, but they aren’t) your calcium levels have dropped and you need to tell a nurse immediately. Easy fix: chewing up a lot of tums a few times a day until your para-thyroid kicks back on, but it is important to tell people about the symptoms (I just thought I was too high from the morphine!).
Now, let’s talk about how you are going to feel after surgery
I was pretty frustrated that I was never told what to expect after surgery. I don’t do well with the unknown. The downside to a Modified Radical Neck Dissection, versus just Thyroid Removal is they peel the skin back to reach in there (ick, I know!). Unfortunately, with this kind of surgery, there is a chance of nerve damage. I was one of those lucky ones who got this (insert sarcastic voice). No one warned me of the numbness or burning sensation that was about to come. About 4 days after surgery, my nerve damage began to show symptoms; basically think of what it would feel like if someone took a hot curling iorn and rolled it down your neck from your chin/jaw line all the way to your collar bone. Not pleasant.
The painkillers they send you home with don’t make it go away, just make you care a little less about it. Ice and staying in the laying down position was the only thing that made the burning/tingling tolerable. The longer I was standing or sitting upright, the worse it burned. So I basically entertained visitors and spent all of my time laying in bed for about 10 days. My friend made me a “get well” basket and included this cute little icepack that basically saved my butt. As people came to visit, my request was always to bring a bag of ice because we were going through it so fast. I’ve been told the tingling is the nerves regenerating and so my feeling should hopefully return on it’s own. About six months later, the tingling was gone, but the numbness still bothered me until I found this product, BRIOTECH which I used twice a day for several months and it seems to have restored almost all of my feeling, not to mention also greatly reduced my scar!
Another thing they don’t tell you; if you have long hair like I do, expect that they use a glue-like substance to slick it back during surgery. I understand they need to keep the surgery site sanitary, but really, glue in my hair?! Not to mention, hey, no showers for a few weeks from basically waist up. So try to figure that one out. Here I am, entertaining visitors in my bedroom, laying in bed, with my neck cut open and glue in my hair. When one of my close friends, who happens to also be my hairstylist, called to see how I was doing, I may have cried a little over feeling very ‘non-human’ and gross because of my hair. She was such a saint! She engineered a way to wash my hair for me without getting my neck wet (as ridiculous as it looks!) and brushed/styled it and everything. That was the first time I felt normal in over a week! Made such a difference. Honestly, it took about two weeks to get the glue fully out of my long hair.
Overall, I have no idea how I could have survived the post-surgery portion of Thyroid Cancer without the help of my friends, family and people at my church. They all rallied around me to support me and take care of every little thing. Your story will probably be different, maybe you won’t have as long of a recovery as I did. Hopefully you won’t deal with the nerve damage or the glue in your hair. No matter how your story is different than mine, I hope that sharing mine will help you prepare for the journey you’re about to go on. It does get better and it is all worth getting the cancer removed. This is the hardest part in my opinion of all the treatment you’ll deal with.
Have you had this surgery? What things would you recommend to others before having it? Leave your thoughts and recommendations in the comments below.
Disclaimer: This post may contain a link to an affiliate.
I have my second biopsy Tuesday. My symptoms have gotten worse & im scared. Reading the real deal helped.
So sorry to hear your symptoms are getting worse. The biopsies were the scariest for me! Not a fun experience at all. I’ve even told my doctor that if they suspect something is back in my neck again I’d rather go straight back to surgery than be put through another biopsy. Or at least knock me out for the biopsy!
Know that there is normalcy and health again on the other side of this. I’m thrilled to hear that my sharing has helped. I’m going to work on getting my other posts up on the LID diet and Radioactive Iodine Treatment, as well as now two-years post surgery update. Best of luck to you and my thoughts are with you for a speedy recovery!
This was really helpful as I’m waiting for the results of my biopsy! I would love to hear how it’s been living without your thyroid?
Thank you so much for sharing your story. I am scheduled for a total thyroidectomy and modified neck dissection this Friday (4-7-2017)
Your story has really helped me and elviated most of my anxiety of what to expect! Thank you so much. I am so proud of you and hope to be as brave and strong as you!
#unbustable
#strength
Thinking of you today and hoping that surgery went well! Here’s to a speedy recovery and no complications! I am thrilled anytime I hear that my story has helped others be less nervous about their own journey.
Wow…thank you for sharing had no idea what to expect. I’m going for second biopsy Monday. And then they will set surgery. Had no idea what to expect at all until reading your article. Hope you are doing well
I too just had full thyroid and surrounding lymph nodes removed, however it was done as outpatient and no drain was used. Dermabond glue sealed the incision and I’m able to shower thankfully. I woke up vomiting after surgery as well, DEFINITELY no fun and painful, but after the rough 2nd day of pain in the throat area, I’ve done okay. I am different in that I want to be left alone and no visitors when I’m in pain and recovering, but the meals would have been nice! I go for my follow up next week, hoping to skip radiation! Best wishes, take care!
Thank you hope you continue to recover well. I hate pain and especially in my throat….But thanks for helping me before surgery .
Thanks for posting this information. I was diagnosed with papillary thyroid cancer 3/1/17. I also had to have all my lymph nodes removed from the left and center of my neck. Surgery was last week and so far recovery is going well. Reading everything you went through helped me prepare for my surgery and know what to expect. Thanks again for sharing!
I was diagnosed May 17, 2017, after my biopsy was done May 15. The Radiologist is a friend and neighbor and had handled my initial ultrasound last October when I “felt something odd” in my throat and had the original ultrasound as suggested by my doc. Two small nodules were normal for my age (58), so he recommended 6 month follow-up. Six months later the changes in one of those nodules and growth of more led to the needle biopsy. My annual physical was coincidentally scheduled May 18, and my recently acquired ENT (for an unrelated issue in January) happened to be walking by when my doc’s office sent over the referral. He had his staff fit me into his schedule the next morning. I am scheduled for surgery next Friday. He doesn’t expect lymph involvement because of small size of lesion (1mm) and absence of additional symptoms. Endocrinologist I am to see is actually the lead guy in my husband’s diabetes care team. I’ve had a lot of fortunate events and caring people pulling together so far to make things work quickly. Or my stars are all aligned, or something… Your story scares the crap out of me, sobers me, prepares me. It’s cancer. It’s surgery. It sucks. My husband will be at my beck and call, which is good because I don’t like other people around when I’m sick. Thank you for sharing. I appreciate your candor! I’m glad I have chin-length hair!!
I am in my 10th year of remission from thyroid cancer. When I was diagnosed in 2007, I was told it isn’t hereditary by one doctor and it is from another! My mom had thyroid cancer when I was young. Thankfully, she is doing fine. My surgery was outpatient! I was allergic to the pain meds (Percocet), so I had to switch to Tylenol only. I had pain, but I thought it was from the intubation tube used during surgery… I later found no out the pain was NOT from the tube… For the past 10 years, I have gone through tests to ch ck for reoccurrence, and thankfully the have been negative! The first few years I had to have a full body scan, ultrasound and blood work after getting 2 shots so I don’t have to stop my meds. This year will be my last year for the shots, pending everything comes back normal. I KNOW my insurance company will be glad for that!! I wish everyone the best of luck in their recovery!!
Thanks for sharing your story. Hi, my name is Nancy I’m 60 soon to be 61 years old. I go this Tuesday for my biopsy results. I’ve had 2 cervical neck surgeries since Dec 28, 2017 at which before my second neck surgery March 1, 2017 on CTSAN they saw left Corotid is blocked 80% and they saw nodules all over Thyroid. So now I’m facing surgery on Corotid (strokes run in the women in my family) and now the possibility of Cancer of my Thyroid….I will admit I’m a little scared. But also like to know how long does it take to return to some what a normal life or do you? Were you able to return to work ? Or are you on disability? I am having pain issues still from neck surgeries and then all of this. Your reply would be great. Again thanks for sharing and God Bless you..hugs Nancy
Thank you for sharing your story! I also have 3 young children and am not getting the property info from doctors and nurses to prepare for any of the recovery time. I go in 2 days for my total thyroidectomy and radical neck dissection. Even if our experiences differ, I will forever be grateful for your story.
Thank you for sharing. I had an 11 cm nodule and the left lobe removed 1.5 wks ago and Friday I received the call that I have cancer. I’m having a second surgery next week and radiation.
Thank you for this article. My husband was diagnosed 2 weeks ago with thyroid cancer. His doctor found a cyst on his neck. We were told it was the size of a golf ball. It was pushing on his jugular and his coradid (sorry for the misspelling!) artery. They biopsied everything they could think of and removed the cyst. The cyst turned out to be the size of a baseball. They also removed his tonsils…not a pleasant thing at 44!!
The biopsy showed he had thyroid cancer. They will be removing his thyroid and all of the lymph nodes in his neck in 3 weeks. This article was so helpful for what to expect. Thank you so much!! He has done everything through the VA hospital. While they have not sugar coated anything, they also haven’t told us what to expect.
Thank you for sharing… my 15 year old daughter was just diagnosed and we are seeing the surgeon on Thursday. I appreciate your story. I’m a teacher and I like to plan or at least have a game plan. I am going to keep the things you shared in mind.
Hi I’ve my thyroid removed two months ago and have been on the low iodine diet for two and a half weeks. I am waiting for the body scan to be approved and scheduled (Pre authorized). I am surprised at how long it takes to get through the process.
Like other writers not much has been said about RAI. I’m nervous and appreciate you sharing your story and experiences.
Boxer braids were a life saver for me 4 lots of surgery right side thyroid, left side, right neck dissection and left. I found. Being as active as possible helped my recovery massively. When I wanted to wallow my husband and kids picked me up. I loved your story so much and hope your are really well ?
Boxer braids is such a smart idea!!! Why didn’t I think of that!? When I was a kid and went to do mission trips in places without showers for a week, we would all cornrow our hair. That would be an efficient way to save your hair from all the surgery goop and lack of ability to brush/wash it after.
Thank you for sharing your idea with everyone else on here 🙂
Hi, thank you for your story.
I am gg for my surgery next mth, just wanna ask, how do u rate the pain? Did u feel the surgery pain while hving a numb neck?
Hi Stella,
Honestly, thinking back the surgery site pain itself wasn’t that bad for me. But I had a lot of other things going on that seemed to distract from it. For example, right after surgery while I was still in the hospital they gave me morphine which made me so sick to my stomach for the first two days that they couldn’t get me to stop throwing up, no matter what anti-nausea medicine they gave me. Throwing up with a large neck wound is not something I advise! Once we figured out that it was the overly-strong pain meds upsetting my stomach, they reduced those and I still didn’t feel the pain but was much less sick.
Then once I was home, the nerve tingling/burning sensation was the only part that I could think about. So I didn’t even notice if the actual neck surgery was painful.
I wish you the best luck in surgery next month!
Thanks for stopping by to read my story,
Angie
Wishing you all the best as you go on this journey. I’m sorry it is so overwhelming!
The good news is that just like the diagnosis and surgery are so fast, so is the whole process overall!
Because of my thyroid autoimmune disease before the cancer (hashimotos), it took me longer than most people to get an “all-clear” from the doctor after surgery. But even with that as a factor, I was able to get to say I was Cancer-free within 2 years of my diagnosis. From diagnosis to end of treatment (to include both surgery and radioactive iodine) was less than 5 months total.
It goes by in a blur and you’ll look back like, “Whoa! That was crazy and exhausting and unbelievable.. but I did it!!”
Thanks for stopping by to read my story,
Angie
Hello Angie.
Thx for your story, you really make it easy for people like me who are yet to go in for lymph nodes surgery.
Thx for now, my questions will come in later.
Kabz.
Hi Angie,
I’m so glad I read your blog. I’m due to have the same surgery in June and I’m so anxious about it. I have 2 kids and am so scared about the whole thing. How did you keep the dark thoughts at bay? I just keep thinking things won’t be ok and I know I need to keep positive. It’s so hard to.
Jo xx
Hi, my name is Laura. Had my thyroid removed 10-13-15. I was scared out if my mind. What brought back sunshine and rainbows? Getting a thyroid mentor to email via Thyca. I also met 2 other people who went thru the same operation and rai who answered questions for me. I also told everyone my business. I work with the public and told all my customers. I cried at work multiple times. I am in awe of how everyone embraced my situation and was supportive. If you need to cry, cry! Don’t be ashamed. I guaranty if helps with anxiety.
I am nearly 70 and just had my thyroid removed, tumours on my parathyroid removed, and some lymph nodes. I was glued back together, no stitches, no steri strips, no bandages, no drain. I was kept in for an extra two nights because I have multiple health issues: COPD, diabetes, arthritis, but I was up and sitting outside hospital next day. I live alone, don’t have any friends nearby, so I had to do upwhat I had to do. I drove the day I was released because I had to get prescriptions filled and pick up my cat.
Mix up with prescriptions on a weekend meant I had to drive 50 k and back again to drugstore and I had to have blood work every two days. I didn’t have time to indulge recovery which could have been a very bad thing. However, I survived the first week ok even though I was exhausted by everything.
Now I’m on the road to getting my meds fine tuned, the swelling is almost gone and my second smile is receding to the wrinkle of my neck, glue is gone from hair ( i got a haircut) and my spirits are improving. Back to meditation and flexibility yoga in the mornings but each separate thing I do exhausts me still. Making a lovely list for my surgeon when I see him in about 13 days. I need to know exactly what was done and what is in store for me going forward. My surgery was June 19/18 and on July 3rd I have to have surgery for some skin cancer on my nose. Lucky me. I am somewhat overwhelmed at times, mood swings (yes even being alone I recognize them) and thank god for kodi as im bingewatching like crazy. I have crazy cat lady moments where I talk a blue streak to my patient and loving Nebula but basically I’m not just surviving but thriving. My advice: be mindful of the procedure in the moment. Don’t get ahead of yourself and don’t overthink it. Stay positive and stay focused. That will be enough. If you are lucky to have family and friends involved in your recovery so much the better. Take everything day by day or even moment to moment. You will recover and you will regain control over your body and mind. Good luck and blessed be.
I have a biopsy scheduled for next week and I’m terrified of the results. Your story made it less scary.
I had a biopsy 1/09/19. Did not expect to have the biopsy on the very first visit to the ENT. Three syringes stuck in my neck and wiggled around. No numbing as the doc said the numbing would hurt worse than the needles, which was probably true. Was asked if I had any family members with thyroid cancer and I said no. My youngest sister had a goiter and her thyroid removed, that’s all I knew. Well, I texted my sister afterwards to asked her about her surgery. She said it was removed because it got big, and, oh, by the way, there was a little cancer in there. I did not know that. I called the info into my ENT. They just called today 01/10/19 to tell me that since my sister had cancer in her thyroid they will recommend thyroid removal. I haven’t even got my biopsy results back yet. So not looking forward to surgery.
Thank you for sharing your story! I had my thyroid (total) and 9 lymph nodes removed from my trachea (7 had cancer) on 8/27. The whole finding out I had cancer process was quick. In mid July I went to urgent care because I lost my voice and had a hard time swallowing. I was told I had a virus. A week later I followed up with my doctor, he saw the nodule when I was talking, sent me for blood work and an ultrasound. Ultrasound showed 3 nodules one was 3 cm. I had a fine needle aspiration next but was numbed from for that. It caused a lot of pressure followed by pain. That showed cancer. I then met with my ENT and came up with a plan. I had a CT to see if my lymph nodes were enlarged. My right one was. Before the surgery, he came into the prep room and told me he wanted to make a decision once I was open about the lymph node. He ended up taking 9 nodes, 7 of which contained cancer. I have to do radioactive iodine in a few weeks. Recovery has been harder than I expected. I spent 1 1/2 days in the hospital with a neck collar. I also got really sick after surgery and switched pain meds ASAP. I still feel some numbness, pain (especially if I sneeze), soreness, and pulling. I see the ENT for my follow up and to remove the steri strips tomorrow. I have 2 layers of stitches inside. I’m having problems balancing my hormones even with the supplement. I hope to get that all balanced soon and at some point to say I’m cancer free! We are strong ladies, we can get through this!!
I did have help after surgery from my husband and friends. We had a meal train which was great to ensure the kids always had food in their bellies and allowed me to eat when I was ready. I also purchased a lot of snacks before the surgery which came in handy to eat in bed or on the couch!
Thanks for sharing, Sarah. I got diagnosed mid July and went in for surgery 8/27/2019 as well. They bumped it up actually since I was scheduled for the following week. I forgot to mention that my sleep schedule went from easily falling asleep to only needing 6 hours. Did you notice anything like that?
Thank you for posting this on Pinterest. I had been looking for a story sharing site like this, so if you found this forum and you’re not sure what you’re story will look like, there some great tips here everywhere that you’ll want to remember.
I got diagnosed June 2019, had a couple biopsy sessions between primary care and the surgeon, and went in for surgery late August 2019. The biopsy feels like a Pap smear in your neck. You got this 😉 My mom, an angel, was a nurse in Mexico just before she had my sisters and me. She had done her thesis on breast cancer and was no stranger to the medical terminology. She treated me like a pre-op patient and what a blessing it was to have someone with a great bedside manner; not to mention the strength she has as a mom, (go mom!). Here’s what you’ll want to do: She braided my long hair before surgery, nail polish strictly forbidden. If you should lose oxygen during surgery, your nails are an indicator. There will be a specialist on the team just monitoring your life, so you’ll want to make it easy on him or her.
Wear something comfy, and appropriate to go out in public in. I grabbed a two piece cotton set from Costco. They’re like long sleeve pjs, that might also be a track suit, and I paired them with slippers/moccasins. They’ve got a good grip on the slick hospital floors and you can wear them outside to your car. I stayed in this outfit and switched into another similar one after I finally showered. If you’re in Northern California (above the Bay Area) see Dr. Michael Campbell at the UC Davis medical cancer center- you’re welcome. No drain, minimal pain, and an inch incision paired with dermabond glue, and a top notch team. You may still get a drain, but you he’s amazing and precise. All the best.
Should you need radiation iodine therapy, it’s just a pill that keeps you isolated for 5 days and at a distance from others for 5 more. Be strict about your diet because this is your chance to zap the cancer and not have to repeat the process anytime soon. For me, this was/is the hardest part as I am currently on day 5 of isolation: a low iodine/bland diet AND no thyroid hormone. My joints hurt and my leg muscles are cramping. I’m queezy, and I’ve lost my appetite. The iodine diet helped me lose weight, but my appetite is gone and i really don’t like that. I did great for 2.5 weeks since I was used to being tired all the time when I didn’t know I had cancer, but this third week of no hormone and little food—I wanted to cry when they said I still couldn’t return to my diet this morning. Today is November 5 2019 and I ate…a 2”x1” piece of club sandwich with extra cheese, bacon, and avocado with garlic aoli that I got for my boyfriend during his lunch break because he was bringing me more dvds to watch and my house has no internet lol. Yeah. I can’t explain it, but with that bite, which I couldn’t eat too quickly because my jaw clenched up (lack of hormone), I thought I was going to lose my mind. I jokingly said, “if I don’t get a bite of that sandwich, I’m going to order a thin crust pizza from Firehouse, I’m done” he laughed, pulled out his pocket knife and set a piece by the door. I’ll marry him. My advice: take the nausea pills, and the Tylenol that you probably don’t like to use. These little symptom healers will help mitigate the effects and keep your experience manageable. Hopefully your journey is smooth.
I am soo glad I found this. I found out last Monday I have thyroid cancer. I am 35 years old and have 3 children under 10. Please know you have helped ease some fears and worries I have. I am currently waiting for a surgery date as I know my thyroid and 5 lymph nodes need to come out. I’m ready to get this done so I can be on the road to recovery.
So thankful for your (and everyone’s) candid explanations. I was first diagnosed June 10th 2020 and have now had two separate biopsies the second of which showed I will need a Lateral dissection of lymph nodes in addition to the full central dissection. I expected there would be pain, but this is the first I have heard of the burning, tingling, numbness and calcium issues.
I am 48 and my family thinks it strange that I am “happy” with the diagnosis, but I tell them it is because now I know I can be fixed and I haven’t just been imagining being unwell for so long at such a young age. (Yes, to me 48 is still way to young to feel so bad!)
My first Surgeon gave me the impression that I would be back to work in 2 or 3 days post-op. I think I will prepare my employer for the possibility that it may be longer. Thankfully my kids are 10 and 13 so they can stay around and wait on me LOL.
Thanks again to everyone who has posted additional information but especially to “Fat Kid at Heart”.
Hi Candice just read your story I just had surgery a week ago I am so glad I found a “fat kid at heart” blog to help me with all of the feelings and emotions that I am going through. And it’s funny my PCP also said I will be back to work in 2 weeks LOL nope not happening. I wish everyone who reads this Uncle looking for answers and find this website a speedy recovery.
Thanks for the post – I am heading for surgery central and left neck modified dissection – I will have drains. Can I ask – how long were you off work for? I was told 4-6 weeks??
Hi Martha, personally I was a consultant when I had the surgery, so it’s hard for me to remember just how long I took off, since I was able to gradually restart. 4-6 weeks definitely sounds right to me though. I wasn’t even really upright the first week.
Hi , I am 42 years old and have been diagnosed with papillary thyroid cancer. I am due for surgery in 2 weeks. I am happy I have found this group, I am scared and I guess a little concerned about recovery. How long should I be off work?
I work in the office at our school.
How should I be sleeping? I have been reading upright?
Hey, just found your blog! How did you come across the Briotech for your numbness? I’ve been doing research and can’t find anything about it being used for numbness. Can you tell me more about it, as I’m dealing with post-TT numbness in the same place as you !
Has anyone had to have their lymphnodes removed in a separate/second surgery from the full thyroid removal? 2 weeks out from full thyroidectomy and now waiting on biopsy back before a potential second surgery 🙁 Looking for info on recovery from the lymphnodes removed. Thanks!!
I am so glad I came across your blog. I believe I am having the exact same surgery in 2 weeks. Modified Radical Neck Dissection. They say 3 nights, neck drain, T3 for 6 weeks while on calcium pills (I saw you took Tums, same thing right?) Then the Radio Iodine pill. Then T4 for life. I added the Briotech to my Amazon list! I’m tripping out but I have great spousal support, sorry you went through it alone but sounds like your circle really was there for you. Thanks for sharing and I hope you are continuing to do well