I could really use a friend

smol_asian
smol_asian Member Posts: 1
in Thyroid Cancer #1

I could really use a friend that understands what I'm going through. 

I was diagnosed with papillary thyroid cancer in December 2017. The doctor felt a lump in my neck, sent me to an ultrasound and found a tumor but couldn't determine whether it was benign or malignant. So my left thyroid was taken out and I was diagnosed with cancer. I had my right thyroid taken out in June 2018 and will be doing RAI in December 2018. 

I am a first year college student and I guess you could understand the stress that I was feeling being diagnosed with cancer in the middle of my senior year of high school. I went into my first surgery, came back to school four days later to take my midterms (while high on painkillers might I add), graduated high school and one week later, I was getting my neck cut up again for my second surgery. Spent the summer before college laying in bed and resting while other 18 year olds were out at the beach and partying. Currently moping my way through college because none of my friends really understand what I'm going through because "I'll eventually be fine." I've pondered the idea of going to cancer support groups but I haven't really gotten the nerve to go so here I am. My parents also put a tracker in my phone when I first started driving so if they see me at a cancer center, they'll just freak out since they haven't really accepted my diagnosis I guess. You here every doctor say "oh thyroid cancer is the good cancer; that's the one I would want to have." Yeah there's the high survival rate and perks of no chemo, but I'm kinda tearing myself apart internally every minute I'm awake; I don't know if anyone feels the same way.. 

Comments

  • lab_lover
    lab_lover Member Posts: 2
    edited September 2018 #2
    I understand

    15 years ago, I was diagnosed when I was 26 years old while attending nursing school, and was completly shocked!  I when in for a regular check up and the doctor felt a lump in my throat.  I had a total thryoidectomy, followed by radioactive iodine treatment.  It was such a scary time for me and my family.  It did get easier every day, just stay focused on your goals.  I completed nursing school and have been a nurse for 14 years.  I just finished another degree in nursing and am looking for nurse case managment positions.  I have been married for 20 years and have a 6 year old son.  I am going through another cancer scare now.  The endocrinologist ordered an ultrasound of my neck just becasue I haven't had one in 12 years, and they found a small cyst which had I had to have that biopsyed.  I now going to have to go on the low Iodine diet with thyroidgen injections followed by a scan.  And possibly have another surgery to have it removed.  I am scared of coarse, I do not want to have surgery again and go through this again.  I am so looking forward to a new position, however now I am going to need time off work, so I do not know how that will work with a new job.  I understand what you are going through, please take all the support you can to get through this period in your life and keep focused on your goals.  

  • kavindrajd
    kavindrajd Member Posts: 5
    edited September 2018 #3
    lab_lover said:

    I understand

    15 years ago, I was diagnosed when I was 26 years old while attending nursing school, and was completly shocked!  I when in for a regular check up and the doctor felt a lump in my throat.  I had a total thryoidectomy, followed by radioactive iodine treatment.  It was such a scary time for me and my family.  It did get easier every day, just stay focused on your goals.  I completed nursing school and have been a nurse for 14 years.  I just finished another degree in nursing and am looking for nurse case managment positions.  I have been married for 20 years and have a 6 year old son.  I am going through another cancer scare now.  The endocrinologist ordered an ultrasound of my neck just becasue I haven't had one in 12 years, and they found a small cyst which had I had to have that biopsyed.  I now going to have to go on the low Iodine diet with thyroidgen injections followed by a scan.  And possibly have another surgery to have it removed.  I am scared of coarse, I do not want to have surgery again and go through this again.  I am so looking forward to a new position, however now I am going to need time off work, so I do not know how that will work with a new job.  I understand what you are going through, please take all the support you can to get through this period in your life and keep focused on your goals.  

    I do understand !

    Well !! i went through simila experience in 2016 when i was 22 years old !! i just began my diploma !! and suddenly i was also diagnosed with papilary carcinoma !! so it really stressfull. and also disturbing for studies as well !!i hope that the doctor already explained the rai procedure !! but you got nothing to worry !! just do your regular routine when that day come just go there !! you will be fine !! it will be a boring experience not a harsh one trust me !! I am from sri lanka and here health care is kinda worst !! so it was harsh for me !! once it is over just give it time and you continue enjoying life as a regular person !! nothing to worry !! Tell your loved ones also that they have nothing to worry !! Wish you a speedy recovery !! Drop a comment whever you want !! DOnt be depressed because there is nothing to be depressed !! Alright !! :)

  • Still Surviving
    Still Surviving Member Posts: 13 Member
    edited October 2018 #4
    Been there since 1963!

    i was diagnosed with PTC in June 1963 at the age of 6 and I am happy to report I am still going strong at the age of 61! Back then the treatment options were pretty limited. Over the course of three surgeries I had a total removal of the thyroid, removal of the right side lymph nodes and a bit of cleanup. This was followed by two radioactive iodine treatments. I’ve been on Synthroid or it’s generic Levothyroxine since then and take it religiously while avoiding any foods that interfere with its uptake. My life has been quite full with an engineering degree, working for a couple great companies designing medical blood analyzers, maried for 41 years,two great children and a grandchild. my diagnosis has not slowed me down one bit and it should not deter you from living a full life. You just need to learn about the cancer and manage it every step of the way. I will say that I had a couple of great endocrinologists early on who saw me as a patient and not a science experiment to try different medicines on. One important thing to know is to monitor your dosage and be patient when changing dosage to allow the drug to take effect, for me it’s usually about 8 - 10 weeks. I have my T4 and TSH levels checked periodically. I have some interesting scars but I wear them as a badge of honor to all the great doctors and my parents who took care of me when I was young. Without their support and skill it would be a different story. Don’t let the cancer scare you or get the better of you! That is the only way it can defeat you!

  • cancerleo
    cancerleo Member Posts: 2
    #5
    High TSH Levels after Full Thyroidectomy

    tHello everyone,

     

    My name is Lisa. I am 46 years old.  I was diagnosed with Papillary Throid Carcinoma and had a total thyroidectomy.  I have my full thyoid along with lymph nodes removed and it was all cancerous.  That was 7 years ago.  I opted out for RAI.  Now out of the blue I am not feeling myself and I went to the Dr, they called me back and said that my TSH levels are at 9.03 and my B12 levels are at 1476.  Does anyone know what this can mean? Has anyone ever had this happen to them? Could this mean that my cancer is coming back?  I also have been having trouble breathing to my full capacity of my lungs.  My legs and arms have no problem but my breathing gets hard.  Can anyone help me with this?

  • Melo0576
    Melo0576 Member Posts: 10
    edited April 2019 #6
    Hey Cancerleo! Hope you’re

    Hey Cancerleo! Hope you’re okay. Did you get it checked out? I had the same procedure in August 2018. I think your thyroglobulin lab results would be an indicator. If your TSH levels are that high, they might need to adjust your thyroid medication. But healthy TSH levels vary among different people. What did your endocrinologist say? Sometimes if you drink coffee with your medication or take medicin too soon after synthroid/levoxthyrine it can cause elevated TSH.

  • Melo0576
    Melo0576 Member Posts: 10
    edited April 2019 #7
    Keep Your Head Up I hope

    i hate when doctors say it’s a good cancer. Sounds like an oxymoron. Good cancer to me is the kind you don’t get at all. If ti’ll make you feel better I went through a similar experienc. I had the surgery and then went to work three works later and couldn’t project my voice. That made teaching interesting. Radiation treatment made my jaw hurt, my nasal passage was on fire and I couldn’t taste or smell for 3 weeks. I hope this whole ordeal didn’t effect your grades. I feel your stress And understand what you’re going through. You want to do what the rest of your friends are doing..not frequenting doctor offices. Sound lame, but yoga and going to spa does help.

  • Mi2bys
    Mi2bys Member Posts: 18 Member
    #8
    June 6th

    Hey everyone and God Bless. Has anyone had a modified radical neck surgery after their thyroidectomy? If so, my surgery is coming up and I would love to know your experience. My endo and surgeon also suggest the radioactive iodine pill to follow. Thank you!

  • Speek
    Speek Member Posts: 1
    edited May 2019 #9
    4 year post total thyroidectomy

    Hello everyone,  can anyone give me tips to help with my energy level. I am on 125mg of levothyroxine and 5mcg of liothyronine, but I am so tired. I come home from work and I'm exhausted, im now gaining weight and am becoming very frustrated.  My Dr doesnt seem to care that I have zero energy.

    Please help.

  • annie4145
    annie4145 Member Posts: 218 Member
    #10
    Speek said:

    4 year post total thyroidectomy

    Hello everyone,  can anyone give me tips to help with my energy level. I am on 125mg of levothyroxine and 5mcg of liothyronine, but I am so tired. I come home from work and I'm exhausted, im now gaining weight and am becoming very frustrated.  My Dr doesnt seem to care that I have zero energy.

    Please help.

    Speek: How are your thyroid

    Speek: How are your thyroid tests?  Are you being seen by an endocrinologist?  Time for a new doctor???

  • Unknown
    Unknown
    #11
    dad and thyroid cancer

    Just wanted to add a few things that I hope helps ease some of the anxiety.  I, myself, had uterine cancer, but my dear father had thyroid cancer when I was a kid.  He survived!  and they thought it had gone into his vocal cords so they actually had to "scrape" them.  He didn't talk for a while.  but he did make it to leave to be 89.  He was around 56 when it happened   Thyroid cancer is not a "good cancer" but I guess what they mean is that it really is not common for it to spread too far.  that's the only good thing I can think about.  My father was given great survival rates and this is going back when a biopsy was "cut" and then suture.  Now they do it with a needle.

    another good thing is: if you need a thyroidectomy, there is a fabulous doctor at cleveland clinic.  His name is siperstein and he goes through the armpit.  so we don't have to worry about that scar around the neck.

    I would never discount thyroid cancer or any kind but the survival rates are great for people that have had it.  Mostly women and I don't know why.

     

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