Tuesday, July 2, 2013

My thyroidectomy and thyroid cancer experience...

WARNING! This wound up being a very long post! But in the end, It helped me a lot to get this all down in words :) Hope this can help at least one person out there that is going through the same situation xoxo.

July 2nd, 2013,

I struggled with whether I should write a post about this since it's been a tumultuous past few months mentally and spiritually for me. Some days I still felt a bit like I wanted to just avoid thinking about the past few months which I realize isn't the best way to go about things. I feel like I'm really starting to get back to being myself slowly since it wasn't only the stress of the results that rattled me, but also the adjustment my body has been going through since removing my thyroid and levelling out all my hormones and getting my calcium back to where it needs to be. To add to all that, I'm a first time mom of a 7 month old beautiful daughter that was 4 1/2 months old at the time so I felt like everything was coming down on me. I thought I should share my story since there were some posts out there that made me feel better at times (but most of them made me feel worse!!!) so I wanted to write about my experience, which I'm very happy to say, has a positive outcome.

A LITTLE BACKGROUND INFO before getting my complete thyroidectomy:


I had known about my thyroid nodules for years, around 5 years to be more exact, and I would check up on them twice a year the first 2 years, then once a year after that. That was what fueled my desire to change my lifestyle to diminish chemical intake and to try and be more natural with everyday things. Before this recent biopsy, I had received 2 previous biopsies that were inconclusive, but my nodules weren't really growing so there were no real signs pointing towards needing to remove them. I'd  like to mention to anyone out there reading this that also has thyroid nodules, that only 5% of nodules turn up being cancerous so don't be too worried if you have some. I considered myself very lucky with all this in the end but I guess in a sense I was a bit unlucky since the chances of a cancerous nodule was very low. For the 5% of cancerous nodules, a small amount of them end up causing an aggressive cancer, and that's why doctors always say that thyroid cancer is the "good cancer" to get if you're going to get cancer. While I don't believe any cancer is remotely good, I get what they mean, but it's still a stupid thing to say I guess...

Many people ask me "how the hell did you know you had nodules?" Honestly, the answer to that is weird... They weren't bulging out of my throat, something compelled me one day (I suddenly had this weird anxiety about my neck for some reason)  and decided to inspect it. I was tilting my head back while swallowing and felt convinced it was bulky, my doctor felt like it was fine, but I felt like one side was fatter than the other. I got an ultrasound and sure enough, I had about 6 nodules on the left lobe, and 2 in the right lobe. The largest was in the left lobe measuring close to 2 cm, which was the one that was closely monitored since it was the largest and the main one for concern.

Since for the past 5 years, nothing had really changed and my anxiety about the nodules were fading, I finally got pregnant and had no real problems in the pregnancy other than the usual morning sickness. It was more than a year since I'd gone to get my thyroid check up and had neglected it a bit (about 1 year and a half actually) when I read online that celebrity Brooke Burke had thyroid cancer and was sharing her story. I was 9 months pregnant at the time, I felt like maybe I should make sure to get an ultrasound as soon as I was well enough after my baby was born just to be safe. Once my daughter was born, about 2 or 3 weeks later, I had an ultrasound done and waited for my ENT to call to go over my results. About 2 weeks after that, I went in to see my ENT to get the results and all seemed well, the nodules hadn't grown but to be safe, we should do another biopsy. I was hesitant since I had gotten 2 in the past that had both come back inconclusive and they were painful and annoying, so I didn't see the point, plus they were 300$ a pop (insurance doesn't cover biopsies since it's considered elective..) but my doc assured me that if this one also came back inconclusive also, that we wouldn't do another ever again and only operate if they grew at that point, so I went ahead and got another biopsy (fine needle aspiration). I waited for my ENT to call me in for my results of the 3rd biopsy, and I remember feeling a bit weird like things might not be honky dory this time around, it was a weird feeling...

By the way, my ENT was Richard Payne, and he honestly is the best ENT you can come across that specializes in thyroid nodules/cancer, hands down...

The day I found out my nodules were cancerous:

(I made it a point to write the paragraph bellow the day after I found out about my biopsy results so I'm including it in this post to better describe what I felt back in February when I first got the news...)

I was waiting in the doctor's office and watched my doc open my file, and as soon as I noticed a bit of a suspected look (maybe I was reading into it like so many do when receiving results) it's like I already knew..."We did a biopsy a few weeks ago, and I'm glad we did it again because the results indicate that the nodule does have cancerous cells, so it does look like cancer, next step is surgery". Strangely enough, even though I had been given the green light in the past (except for the biopsies which were not good or bad since they said they couldn't tell), I kinda had the feeling my doctor was going to give me the not so good news, call it intuition or whatever it was, I had prepared myself for the news, good or bad. Since they could never really tell me for sure that the largest nodule was benign, I always felt like I was going to have to look over my shoulder, so in a way, it was a relief to finally get a result that allowed me to move forward since I kinda always felt like I was in limbo. I'm not going to sit here and say that I was 100% strong and non affected by the news, because I do remember nodding my head in silence the moment he told me, and saying "Ok (while nodding still), Shit... Ok (again still nodding) so surgery huh...ok..." I was a bit in disbelief, but then promptly went into "need to know all the facts" mode. One of my first questions, " my daughter is only 4 months old, will this affect me taking care of her (in terms of the recovery), "Also, my husband and I would really like to have another child, will I be able to get pregnant again in the next 2 years? Honestly  the question "will I die?" never even crossed my mind since I'm a super type A personality and I always need to know all the facts, the day I found out I had nodules about 5 years ago, I always knew that the absolute worst case scenario was that it would develop into cancer, but even then, the cancer would be extremely treatable, so I knew it was a set back, but that I was going to be ok, so in a way, I'm very lucky to be able to say that yes I have a cancerous tumor, but my prognosis is really good which isn't always the case for all those who get the bad news.

My doctor then told me, one of the risks would be that I could lose my voice and sound like I was whispering with a scratchy voice forever which was a bit scary but you do what you gotta do. He said that he wouldn't make a huge incision so the scar wouldn't be too crazy large, but that I would probably need to do one radiation treatment in pill form to finalize the situation. I wasn't going to be able to pick my baby up for 2 weeks post surgery and if I needed the radiation, I would need to be away from my daughter for 10 days...


Fast forward to me writing in the present:

As I read my first reaction in the paragraph above (which I only re-read today), I realized I was very optimistic, and non affected, but in the weeks following, reality set in, and my frame of mind did go through some highs and lows.

I was given a date for the operation for April 17, only took me 3 weeks to get me booked.

The day of the surgery, I was tense since I had never gone under general anesthesia before and felt nervous about any risks since I now had a baby I needed to be there for. I was still breastfeeding, and it was important for me to keep doing so so I packed my clothes and breast pump and went to the hospital in the morning to get it done... I pumped right before my operation, then I was waiting on the stretcher to get wheeled in. Once they brought me into the operating room, the anesthesiologist told me she was going to give me an I.V and start me off with something to relax, I distinctly remember saying: "Oh awesome just what I need, great lol" they told me to start counting, I remember feeling weird and telling them "Wow I'm really feeling this right now" and boom, next thing I know, I was waking up with nurses asking me my pain level from 1-10. I wound up needing to stay in the hospital for 4 days since my calcium levels dropped and weren't coming back up so it was a shitty situation since I missed my daughter. I kept pumping to keep my milk production going, but dumping it obviously...As for the surgery itself, It wasn't too bad at all, I was a little sore for a few days, but I was able to get back to eating no problem the next day. I did lose my voice for a few weeks, and to this day, it's not back 100% (I can't yell past a certain point without it causing strain on my vocal cords) but it's much much better :) I got by only using tylenol the first 2 days then I didn't need anything for the pain after that since it was very tolerable. Honestly, the surgery was the easiest part of this whole situation looking back on it now.

5 days post surgery.
I was finally able to go home after 4 days, but needed to keep taking 16, yes 16 x 500 mg calcium pills a day since I still had tingling and pins n needles in my hands and feet. They also started me on 0.1mg synthroid the day after my surgery to make sure I didn't go hypo since they removed my whole thyroid.

I was finally home, now the waiting game for the pathology results began. (4 weeks without knowing btw...)

This part was the part that took the biggest toll on me. My doctor always assured me that mortality was not something he needed to discuss with me, but the not knowing what was going on was sparking all these scenarios in my head, some positive, but more of them were catastrophic obviously...First thing to determine with results was confirming 100% if the nodule was indeed cancerous since sometimes they are "suspicious" without being cancerous in the end, second was finding out if it had spread to the nearest lymph nodes, third was to make sure there was no metastasis (spread to blood, lungs, brain etc...) When I went in for my results 2 weeks later to remove my stitches, I was told the results weren't in yet, but I was already freaking out a bit because of a story a client had mentioned to me (If the person in question happens to read this, I don't mean to make you feel bad!!! lol). I was working on a logo for this client about 1-2 weeks post my surgery and my voice was still pretty bad (sounded like I had lost my voice) and on the phone with her, she asked me if I had lost my voice and was sick or something, I said yes. I didn't want to mention my surgery since I didn't want to talk about it really...We got to speaking about stuff and then she mentioned how she was a bit sad and depressed since one of her best friend's sister is 32 (my age at that time btw, I turned 33 shortly after) found out she had thyroid cancer that had spread and was at stage 4 and that she would need chemo...My heart sank, I was 1.5 weeks post op, optimistic that a serious outcome was unlikely for someone my age, and now someone is telling me this story, she didn't know about me so it was weird that she had told me this story. I then went into panic mode quite frankly...SO I mentioned my anxiety about this to my doc when I saw him for the appointment that he didn't have my results for yet...He told me that yes, unfortunately, there are some cases of thyroid cancer that are more devastating, although not as common, he said he did have some patients my age that were in a bad situation, but he assured me that with what he saw when removing my thyroid, that even if it was cancer, I would never die of this (most people with thyroid cancer will recover fully), which strangely calmed me down, lol I remember saying "great, so I'll die of something else" and he said yes...

2 weeks later, it was the day for me to find out my results...worst day ever, the fact of not knowing was driving me crazy, I remember my legs going weak when they called me into the room. As I waited for my doctor, my heart was pounding super hard and I was clutching onto the medallion around my neck which belonged to my grand father which has always made me feel like he was watching over me when I was wearing it, he was a very spiritual man and told me he would watch over me which I believe he does :) Waiting in there I was thinking to myself: what if the doctor was wrong? What if it did spread, what if I am not around to see my daughter as a teenager, or watch her get married, or have her first child, the bad thoughts were devastating me, what if I need radiation? what if I need chemo? What if I only have 10 years to live...I look back now and realize I was losing my mind, but at the time, it seemed warranted since I was living in limbo. 

PATHOLOGY RESULTS:

I tested positive for microcarcinoma (cancerous nodule measuring less than 1 cm, my cancerous nodule was 0.9cm). For anyone who's had thyroid cancer, this was actually good news in a cancer situation. The cancer was not advanced enough to have spread, my lymph nodes came back clean and benign, and the good news was that I wouldn't need radiation since it was all taken out with the surgery (that was a big one for me because I would have needed to wait at least a year before even considering to get pregnant again). The funny part was that the nodule that was biopsied (2 cm one) came back benign, in fact, all of them came back benign except for the tiny one so my endocrinologist was puzzled as to how my biopsy came back suspicious since the lab was barely ever wrong. Turns out, he suspects, that my ENT was determined to get a good sample during the needle aspiration biopsy since the previous results were inconclusive, that he may have gone a little further past the larger nodule and wound up knicking/piercing into the tiny nodule that happened to be the ONLY cancerous nodule that probably was positioned right next to the larger one...Talk about complete chance and being an insanely lucky bitch huh...Chances are, had they not received this suspicious biopsy, they would have only waited until years down the line when that tiny little cancerous nodule would have grown and possibly spread before taking action. Truth is. I'll never know, some tiny thyroid cancers can stay small for decades (some people die of old age before the cancerous nodule does anything to their body), others explode and spread like wild fire, the good news, I don't need to wonder anymore, my cancerous thyroid is gone. I had asked my doctor if this was something that was hereditary (thinking of my daughter and any children I would want to have if I knew it was safe to) and the doctor said "no, this isn't something you need to worry about passing down". Thyroid cancers aren't the same as some breast and ovarian cancers that can sometimes be passed down genetically. Apparently the cause can be radiation exposure in childhood such as too many x-rays (dentist type I guess) or other types of radiation (but mainly in childhood) but it appears that nobody really knows for sure. I feel like I was so lucky and blessed to have been able to attack this problem before it could really develop, and so fortunate that my doctor considers me the "lucky" case he's dealing with right now since he is currently working with many thyroid cancer cases which he tells me I am the exception to since they all need treatment. Most days I feel so lucky, but the stupid thing is, I found myself hit hard and engulfed with this weird depression about 1 month after I got my results. I couldn't understand why, since I was given great news considering the alternatives, news that some people in a worse situation would have been super grateful to have been given, I didn't even know the girl my client spoke of that had stage 4 thyroid cancer, but I found myself thinking about her and praying for her a lot. 

Looking back on it now, I think I was so determined to be strong and keep taking care of my daughter and family as if nothing was going on and tuck all my fears away that once it was all done, It was as though a boulder fell on me. I had literally taken 1 nap since getting home from the hospital and threw myself back into mommy and wifey mode. My hormones weren't right since my thyroid was gone and it made it all harder to cope with,I had never been this tired before and it added to the build up and I guess I was having a hard time moving on from the ordeal un affected. I suddenly started making all these appointments with my doctors to take tests to make sure everything else was ok, pap test, dermatologist for beauty marks, breast exam etc..and I realized I was getting terrible anxiety about getting other sicknesses which was taking a toll on me, I started waking up with panic attacks (which was all new to me) and constantly feeling a tightness in my chest from anxiety. I read in many places that post thyroidectomy was a nightmare, and while it has been difficult at times (I wouldn't call it a nightmare, there are far worse things in life), things are starting to settle down for me now 2.5 months post surgery. I can only assume that it's normal to have rough patches since you need to remove your thyroid which does control quite a bit in the human body and unbalanced hormone levels can wreak havoc on someone mental state, now,  add breastfeeding to that and being at home all day taking care of a baby, it was hard on me. I wish I could sit here and say that everything went smoothly and there were no set backs or cloudy days, but it just wasn't the case for me, but I have since adjusted my synthroid 2 times (I'm now at .15mg) and I now feel much better. Also, I read many people have weight gain concerns, as did I, but I didn't gain a single pound, in fact, I lost 10 pounds. Granted I still had some baby weight I needed to lose before my operation ( I'm 5'7 and I weighed 140 at the time, but my post baby weight was 130 lbs) and I now weigh 129. I would also like to add that I was slightly hypothyroid, so if you are hyperthyroid, you would most likely gain back the weight you lost because of your overactive thyroid post surgery, this is normal since the weight loss was not a natural occurrence to begin with. I did change the way I ate a bit by avoiding too many carbs and sweets, and when I would eat junk once in a blue moon, I would see it a couple days later, so those days are numbered for me. I finally have enough energy now to start thinking about working out so I'll probably lose more weight when I start with that. 




So here I am, 2.5 months after the fact, feeling better everyday. I'm down to only 3 calcium pills a day should be completely off of them in two months. My energy level is going up and my on/off depression is  fading away the more my hormone levels balance out so for all this I'm grateful. I'm feeling normal again! I'm also so thankful that the surgery was all I needed to move on, I know how lucky I was for that. I would also like to say how appreciative I am to be Canadian...I had everything taken care of with the best doctors (I made it a point to research the best and go them myself with referrals from my GP) and was treated amazingly and I'm getting check ups regularly to make sure everything is coming along smoothly...I didn't have to re-mortgage my home or jeopardize my child's educational future to do it like other countries force their tax paying citizens to do, It was all free of charge thanks to our medical system which many people have complaints about, but in the end, we're much luckier than many other people in the world and we should all realize that a little more. I know how many people are not as lucky as I was in the same situation, and for those people, I pray for you and think of you everyday. The lessons I've learned from all this is not to neglect my health, be proactive and trust your instincts, and be appreciative of all the little things, don't worry about what you don't have and what others do, the importance we put on material things is so stupid if you think about it... It's nice to have nice things, but it means nothing important in the end. All that matters is your family, your handful of real friends and your health.

I would like to wish you all happiness, health, and lots of love! xoxo

k

UPDATE#1: Today is July 27th, 2013 (A little over 3 months since my surgery), and I wanted to update my progress. I'm still on 0.15mg of synthroid and doing much better. I don't have any depression at all, and my anxiety is basically non existent. I've been much more relaxed and back to myself and feeling very optimistic :) I look back now and know for sure that the fact that I wasn't balanced and the stress from the whole ordeal was what drove me a little crazy for that short period of time. I'm moving on with my life, still feeling lucky everyday, and not dwelling on anything...In fact some days, I forget that all that ever even happened. I will say that I still do have the odd extremely tired days, but I'm still breastfeeding and I have a baby so not sure its all due to adjusting my levels or the fact that most new mothers have days that make them super tired!! I've also had to take ferrous sulfate supplements to keep my energy up since I do tend to have low iron, and the breastfeeding is definitely contributing to that depletion. I'm still taking the 3 calciums a day and will see my endo next month to see what he suggests I do with that. I will periodically post updates to document my experience in progress :)

UPDATE#2: Today is September 11th 2013 (almost 5 months post surgery). Things are coming along, I have not gained any weight but I'm still a bit sluggish/tired. I've kinda gotten used to being tired all the time but I hope to have this improve. The last time I went to the endo (aug 22nd) he told me that my levels were almost right but not right enough just yet (not right enough to try and get pregnant again should I want to... I'm not thinking of that just yet but maybe in the new year, if all is well, I'll go for it). I do have a small super active baby so that might be a huge reason why I'm still tired a bit but I do feel like my no thyroid situation is also responsible. I'm still taking 2 calciums a day since there are still signs of muscle twitching. I'm still on .15mg synthroid. I'm thinking of starting to go see a homeopathic doctor soon to get different perspective on my situation while still working closely with my endo of course.

UPDATE#3: Today is March 3, 2014, and approaching the 1 year anniversary of my thyroidectomy (April 17th). It's been a year of ups and downs, but I'm happy to tell you that I feel myself again fully! Some days, I feel the best I've ever felt!!! So while it can take a little bit to get there in terms of leveling out with the meds (synthroid in my case) now that I have balanced everything out, I'm happy, feeling good and back on track! I did have to avoid caffeine at one point since it was giving me chest pressure but I'm back to having my 1 cup a day :) My energy level is back to normal and started up at the gym 2 months ago and have no issues :) I haven't gained weight for those out there who are worried about gaining weight post thyroidectomy, and now that I'm working out, I'm at the same weight but notice that I'm tighter and slimmer so I guess I've lost fat but gained muscle so the scale isn't really buging since I haven't really changed the way I eat... I have to say that If I ate everything I wanted all the time, I could see how it's a bit easier to gain weight eventually, so realistically, you might need to cut back on eating junk if you did before. I can tell you that I avoided gluten for 1 month (only ate rice/corn carbs) and lost about 7 lbs, but as soon as I started eating wheat again it all came back. I suppose I had also lost the weight since avoiding wheat means avoiding extra carbs I would have been eating (but they're so good arghhhh)... I still eat goodies, but def not as many, and soft drinks are a story of the past...I have replaced my craving for the fizzy drinks with this alternative here! I never drink the diet crap with the artificial sweeteners as I'm not convinced they are good for us... I'm starting to get ready to start trying to get pregnant again in the spring now that my levels are looking good, so just on top of my folic acid supplements then jumping in to going down that road again! My life is back to normal, moving on and being positive about it! My focus is staying mentally strong, not forgetting everything I went through since it reminds me of what's important, and what isn't! I hope any of you going through the same situation are well and working towards moving on to a better place! (a lot of it was mental for me). If I do get pregnant in the future, I'll keep you all posted on pregnancy post thyroidectomy! My doctors have all assured me that my thyroid cancer is not hereditary and more the cause of what they believe is too much localized radiation exposure in childhood (dental xrays etc..) so I feel good about going ahead and trying for another bundle of joy :) Hope you are all well and happy. xoxox

UPDATE#3: Today is October 16th, 2014 and it's been 1.5 years since my thyroidectomy. I can honestly say that life is GREAT!!! I'm feeling really good and my levels are where they need to be. I only go up and down in weight by about 3-6 pounds but I always have even pre thyroidectomy. I try to eat well everyday but I still allow myself some goodies from time to time and try to be active so I didn't have to flip my whole world around post surgery to maintain my pre surgery weight. I still have days here and there when I get anxious when I hear of cancer stories but I focus very hard on remembering to live for today and be present because it can end up being a bus that kills me crossing the street in the end if I'm not paying attention lol and life is too short to be living in fear. My cancer never spread beyond the thyroid so the likelihood of it coming back is very very low, but I sometimes get scared that I would get hit by another type of cancer, so I just make sure to stay on top of my health as always. All I can say for now is that life is good, this whole experience has changed me for the better as I see things very differently now. If you are just started to go through all of this, do whatever you can to keep yourself in a positive and good state of mind, that was the hardest part sometimes but it was what got me through the day to day when my levels weren't right. Reject fear because it will only keep you from feeling happy and well. Hope everyone is well, happy and enjoying their day! xo

UPDATE#4: Today is May 20th, 2017, and it's been 4 years since my thyroidectomy. I had my second child last year (March 2016) and experienced pregnancy with no thyroid which I plan on getting around blogging about at some point to help anyone out there going through the same! Things have been great with the thyroidectomy and my levels! The way I think the thyroidectomy affects me most today is the stress I get sometimes during my yearly checkups. I also tend to worry a bit more about my health now that I know how quickly things can change, but mostly I try and enjoy the good and worry less about the 1000000 things one can manifest in their mind if they're as creative as I can be lol. My pregnancy went by perfectly!! Easier than my first since I was more closely watch over, and I also breastfed a full year. I haven't changed much in weight at all in the passed 4 years, and all I really do is make sure not to over indulge but mostly keep busy running after 2 active kids lol. Things are good and the whole experience is still something that has very much changed my life in that I do see things differently, I appreciate little things a lot more, I tend to put things more in perspective, try to enjoy the now more, avoid stress causing situations. Hope you are all doing well and trying to enjoy your now also xox <3


9 comments:

  1. I am so PROUD of you and thank you so much for sharing your story in this format. It sadden me and touched me... So glad everything is better now. you are one of the toughest women that I know-xox

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    1. Thanks Chiffers!!! :) Doing much better ;)

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  2. Did your nodule look like adam's apple?

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    1. I only actually noticed the nodules when I would tilt my head back and swallow. It did not look like an adam's apple...I had 2 bulges on the sides of adam's apple area (which is normal since its where your thyroid is placed) but I noticed that one side of the thyroid was bulgier than the other side, and that's what worried me since I knew they should be the same size...

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  4. Thank you for sharing your beautiful story. I have several nodules, so far, all benign, but I think about getting the surgery every day....I don't want to live in fear anymore...just want it out. Was the surgery itself painful? Thanks again for sharing, Good luck to you

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    1. So sorry for not catching this comment earlier!! Thank you for your well wishes :) Have you ever biopsied any larger/concerning nodules to scope them out a little further? You technically wouldn't need to remove your thyroid over nodules unless there is some kind of indication of cancer. The risk of cancer in thyroid nodules is usually only about 5% so please don't be too worried <3 As for the surgery, it was a pretty simple procedure! I only had a pain killer the day of, a tylenol the day after and didn't feel the need for any pain management after that. The hard part was the stress of the results but mostly dealing with having to readjust my body to not having a thyroid anymore, I would say that was the hardest part for sure! It took my body about a year, but I will say that it's been 4 years, another baby later and I feel great now!! :) I'm happy to answer any questions if they help put you at ease :) I was so scared with the info out there when I was going through it :(

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