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B4 Removal of Thyroid & Unknow Cancer

swt_reyes
Posts: 28
Joined: Nov 2010

Hello everyone My name is Christy Reyes and I have just joined. Glad to find a place to talk to people about this because I LITTERALLY have NO ONE to talk to about this. My mother passed away and I live in Alabama where I have only resided for 2 years now and I am a SAHM who doesn't get out much.

I found a huge lump in my throat about 6 mnths ago, finally had it checked and they immediately started testing my blood, ultrasound as well as thyroid uptake scan. All these things turned out normal with the exception of having a huge golf ball size lump in my throat and several small lumps. The Dr. said he can biopsy, but he cannot biopsy them all b/c there are too many and he may miss one, while others may turn out benign, a small one may go under the radar, so to speak. They want to remove it to be safe & then test for cancer after removal. I am fine with that but I am thinking the worst at this point.

I am not scared of any information you guys can give me, so do not be afraid to tell all please! They also found a spot of basal cell cancer on my color bone, which they said is not in any way shape or form connected to thyroid cancer and that they have nothing to do with each other. Yet I am reading on this forum differently. Should I have a biopsy to turn around and just have the thyroid removed anyway, it seems almost like a waste of my time. To be honest I am scared of the thought of someone sticking a needle in my throat and they said they cannot put me to sleep for that so I really do not know what to do at this point! Any help or information would be greatly appreciated!

God Bless Everyone!

~Christy~

Also the after affects of this surgery? What is it like? It will be nice to hear the side coming from the patient's point of view because I already know the Dr.'s tend to candy coat things which is why I have set out to research this and also get some intake from people who have already experienced this as well.

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Christy, welcome to the group. Continue to read posts to learn more about Thyroid Cancer. First, I doubt that the Basal cell is in any way related. It's not impossible but basal cell is not typically found in the Thyroid. If these lumps are bothersome and make you feel uncomfortable i.e difficulty breathing or swallowing, I would recommend removing them or the entire Thyroid. If you go with removing the lumps and leaving the Thyroid and they do find cancer you will have to go back into surgery and have the whole Thyroid removed. Some hospitals can biopsy (aka: Bx) right there in the OR. I am an advocate of a single surgery if at all possible. Surgeries become more difficult with scar tissue and the risks increase each time. Biopsies are not as bad as they might seem. I am having my third Bx this Friday. Living without a Thyroid is very different. You will need medication for the rest of your life. You will probably has less energy than normal and more difficulty loosing weight if this is a problem for you. It might take a while to get the dosage right for you body. I was diagnosed with Papillary Thyroid cancer in November 2009. I had metastasis to the Lymph nodes and a Lymphectomy in June of this year. I had Radioactive Iodine Treatment (aka RAI or I-131) in September of this year. I am getting ready to go under the knife again next month for more metastasis to the Lymph nodes. I tested positive for a Mutation gene called a B-RAF which makes my cancer more aggressive and harder to treat. If you have tissue removed and it is cancer please ask to be tested for the B-RAF Mutation gene. Some doctor's may not know about it and if yours doesn't, he needs to learn about it. Don't be afraid, you have friends here to help you through this. I hope you live in an area that has good Medical facilities available to you.
Sincerely,
SunnyAZ
Julie

swt_reyes
Posts: 28
Joined: Nov 2010

I have been reading about the different kinds of thyroid cancers and it scares me. I also read about the parathyroid cancer, which is highly uncommon, however I have all the symptoms of that. I hope it is not b/c I just do not know what I am going to do, I feel so alone the way it is already and to have this going on makes it worse and even more isolating for me. I will definitely be asking about that test for the B-RAF! Can they test for that b4 they are certain if I even have cancer just to rule it out??? I hope they can and will. I am being treated in Dothan AL @South East Medical Center. I am new to the town so I really dnt know but I know it is the best in this area. If you know of any extremely good surgeons please let me know. We are willing to get another opinion and/or travel if need be! I want the best possible surgeon definitely! Also they have already said I will have to have the whole thyroid removed so I will have to be on medz for the rest of my life just like you.

I am so sorry to hear you have had to have so many surgeries and complications with your situation! You will be in my prayers! I only want to have surgery once for this, I hope that's how it goes but we'll see. How can they tell if this has spread to your lungs or your parathyroid or your lymph nodes? Can they find this out b4 they perform the surgery???

Thanks so much,
I greatly appreciate your help!

~Christy~

sunnyaz
Posts: 582
Joined: Oct 2010

Educating yourself is the best way to advocate for yourself. The B-RAF is usually done on the tissue after surgery. I doubt there is a blood test for it yet. I am in Nursing and so far I haven't had a request for it in the blood. I didn't even know about it until my Endocrinologist told me that I was tested and it was positive.

There are lots of great doctors in our country. Just research the ones that you have to be sure there are no Malpractice suits or other complaints against them from the Board of Medicine. I do recommend that if this turns out to be cancer you should have an Oncologist (Cancer Specialist) preferably one that specializes in Endocrine cancer.

Taking my "Thyroid in a bottle" as my husband calls it, isn't so bad. You get into a routine and it's just something you do every day like brushing your teeth and taking a shower. Most Thyroid meds are taken on an empty stomach without dairy products at least a half and hour or more before you eat in the morning. I have never had any problem with this.

I am not so worried about the surgery, I have come to accept and almost expect them. I get to take off of work from December 17th through the 3rd of January with some pretty good drugs. Not that I am a druggie or anything, but sometimes it makes for an okay vacation since that's really the only vacation time I am allotted. I have to use all of my PTO for surgeries and treatments. Might as well make the most of it, huh?

As far as metastasis, they can usually tell from MRI's, Sonograms, X-rays etc. PET scans are used sometimes as well. Just depends on your symptoms, history and your doctor as to what they will order.

I will also keep you in my prayers. I am a firm believer in God and his Son. He will get us through this. Keep your faith strong and never waiver. Even in things that seem really bad and you find yourself asking "why me", know that there is good that will evolve from everything. He will never give you anything you can't handle. It is His way. I lost my business when the economy crashed and I had to go back to school. I chose the Medical field because of the low economic impact, or so I thought at the time. Had I not had my background in Medicine, my cancer would have gone way past stage 1 before my Primary doctor did anything about it. Incidentally, I was just finishing school when I was diagnosed. Just a month before I got really sick with symptoms I studied the workings of the Thyroid. Before my education, I didn't even know what a Thyroid was or what it did. That is God's work. Yes, I lost my business and I lost my home to foreclosure, but now I have a better home and a much more stable career.

Keep me posted.
God Bless,
Julie

swt_reyes
Posts: 28
Joined: Nov 2010

I am curious as to what your symptoms were? You said you found out about it about a month before you started having symptoms so I was wondering. Also how did you find it if you don't mind me asking? I knew nothing about the thyroid or what it done before this either. I just know I always felt like I had a knot in my throat, after time I realized it was a knot and that it was not normal.

I went through some rough times in the past just like you and then the Lord answered some prayers and blessed me in so many ways I am so lucky to be where I am right now. I hope all goes well with your surgery and you should definitely have the best of this holiday season, might as well while you can right! I was wondering why they wanted to wait until after the holidays to do my surgery because I was almost immediately like "ok get this thing out of me" lol. So having this surgery for you right before Christmas is going to be ok for you? I sure hope so and keep me posted as well. I feel I have found a new friend, thank you!

Sincerely,
~Christy~

sunnyaz
Posts: 582
Joined: Oct 2010

I had heart palpitations beginning in December of 2008 with a lot of Acid Reflux and stomach sounds. Then I would get so cold during the winter that I would shake and almost go into a seizure where I couldn't move. If not for my husband to carry me inside I might have froze to death outside on a couple of occasions. Yes, even in Sunny Arizona it get's very cold in the winter. One day in March of 2009 I took a really hot bath; which is one of my favorite past-times and I started feeling really sick and dizzy. I crawled out of the bath and made it to my bed. I then started having symptoms like a stroke. My body temperature was so high I turned red and my husband and daughter kept fanning me to cool me down as I lay there naked and helpless having what I called a stroke. I just couldn't control my body temperature. I would suddenly feel very nauseated and tired and it would stop me in my tracks. Whatever I was doing I had to stop and lay down just to concentrate on breathing and not passing out. Even if I was driving somewhere I would pull over and crawl in the back of my van to lay there, just praying and concentrating on breathing. All the while telling myself, "you are okay, the doctor says this is all in your head, you are okay." I would chant this over and over again in my head. My doctor thought I was having Panic/Anxiety attacks. I finally put the symptoms together along with the unexplained weight gain and found the lump in my neck. I insisted on a Sonogram and biopsy. My doctor is still eating his words claiming that he "doesn't have a crystal ball." My reply is "yes, but you do have a MD and ears to listen to your patients." I get really ticked off when he sarcastically refers to me as the "doc."
Take Care, will check posts tomorrow,
Julie

swt_reyes
Posts: 28
Joined: Nov 2010

I have been so busy the last couple of days I finally found time today to get online and saw your reply! My daughter and I both had surgery this morning; she had ingrown toenails on both big toes and had both sides of both toes worked and removed the roots. I had to get more skin removed from my chest from which they recently, within the last month, found out I have basal cell carcinoma. I also have my six month follow up mammogram next Thursday for some lumps they found that were abnormal six months ago and they want to recheck. I pray the thyroid and breast are not related!

I have had heart palpitations, shortness of breath, anxiety, dry skin, constipation, numbness of fingertips and toes, chest pain and seem not to handle cold well either. It's odd about the hot bath thing you mentioned. About six months ago I took a hot bath, cause I love it and its relaxing, and when I got out I almost passed out and felt nauseated, yet I had no idea why. So my husband told me to lay down and get some rest so I did and felt better the next day. I had no idea all these things were related to the thyroid. My biopsy of skin today was on my left color bone area, second round for biopsy, not fun having the scalpel that's one thing that's for sure! It hurts and I demanded pain medz this time! Last time they were like oh it won't hurt much, yea right where they wrong, and it was the weekend so I had to suffer. This time I said I am not letting you cut on me anymore unless you give me something for pain after this numbness wears off, so they sure did send me home with something for pain. Man it really hurts having them cut into your skin and take chunks of it, especially when you got 3 yr old son who hangs on you all day hugging you and all. He's my love bug but dang he makes it hurt worse, bless his little heart, he loves his momma, he's a momma's boy =)

It's great to hear from you and I hope you surgery goes well hun. Keep in touch!

~Christy~

sunnyaz
Posts: 582
Joined: Oct 2010

It sounds like you are going through a lot right now. I understand the skin biopsy pain and the toenail pain. I assist in these types of surgeries all the time. The Lidocaine can only numb it for a little while. We usually have an Rx ready to go before the procedure even starts. I hope they gave you Hydrocodone or Percocet for the pain. Depending on what they gave you, you can also use Acetaminophen (Tylenol) or Ibuprofen (Motrin) in addition. If they gave you a pain killer with a combination of drugs you don't want to add to it. Hydrocodone often has Acetaminophen or Ibuprofen in it. You will know if after the drug name it says APAP 5/500 or 7.5/500 mg. If you have questions as to what is added just call any Pharmacist.

I am going to the hospital tomorrow morning for my Fine Needle Biopsy of the left lymph node they found on the last Sonogram. Hope it's not another metastasis to the other side, but as long as I am having surgery on the 17th it's better to know before and get it all out at one time. At least I get a day off of work! I got a chuckle out of the doctor I work for when he asked me why I wouldn't be there tomorrow. I said "I am going to hang out at the Cancer Center tomorrow and let them put a big needle in my neck." He replied, "what some people won't do to get out of work!" I laughed and said "I know, right!?" He is such a great Doctor, I wish I could have him as my own PCP but it's against company policy.

Take each day one at a time and never let your spirits down. Live, love and laugh every single day. I tell my patients all the time that laughter is the best medicine. I have an MS (Multiple Sclerosis) patient going through an exacerbation right now. While the steroids are helping her, I advised her to plug in a good comedy and keep laughing and smiling. I try to leave each day as if it were my last. This is the best way to never have regrets. Keep hugging and kissing that precious boy! You have so much to be thankful for.

I will post after Bx results.

God Bless,
Julie
AKA SunnyAZ

swt_reyes
Posts: 28
Joined: Nov 2010

Hope your biopsy went ok! They gave me lortab 5mg. Last times I usually got Loracet 7.5 mg. Wonder why they would drop it like that. Oh well at least they gave me something that's better than nothing for sure! I agree with you laughter is the best remedy for illness. My step-mother has been reminding me that I need to be watching comedy so I have been. Have you saw Date Night yet? Oh my goodness it is the most hilarious movie, I haven't seen one that funny in a long time. You've got to watch it! It starts out kind of slow but it gets very very funny, I highly recommend it definitely.

Sorry I missed you yesterday I was feeling run down with no energy. I have noticed that when I wake in the mornings I feel great, but then as the day goes by I feel more and more drained of my energy. This is awful to say but I went to bed last night at like 7pm and slept until 9 am. My husband doesn’t understand why I sleep so much more than him, but I just tell him I don't ever seem to have any energy. I hate it!

Hope you doing ok, it's great hearing from you again =)
May God Bless you and your family!
~Christy~

sunnyaz
Posts: 582
Joined: Oct 2010

Lorcet and Lortab are the same drug but they bumped you up 2.5 more mg's. It's Hydrocodone (Vicodin). Good pain killers if you can tolerate them. Some people get constipated if they are on them for long periods of time. Best to use Metamucil if you take them more than a few days. If it has a second strength behind it, like 500 or 650 it also has Acetaminophen (Tylenol). So you don't want to add to this by taking any more Tylenol. You can however use Ibuprofen if you need added relief. No more than 800 mg's every 6-8 hours. Need to eat with Ibuprofen. Never take it on an empty stomach.

This is totally normal to feel very tired. I wake up tired and go to bed tired feeling tired all day long sometimes. I do have spurts of energy however. Just need to educate your husband a little bit. My husband is very understanding about my illness. I am really lucky to have such a wonderful guy. He tries to keep the house quiet while I nap. Sometimes that is very hard to do. I have a teenager, a dog, a cat and a very loud Parrot.

I will go get the movie "Date Night" very soon. I need a good laugh.

The Biopsy went well. I should hear something next week as to whether it is metastasis to the left side or not. I LOVE my new doctor. He is so amazing and he actually has a personality. Sounds weird but I am looking forward to my surgery even though I will be unconscious the majority of my time. I just feel so comfortable with him and have complete trust in his abilities.

When is your surgery? Keep me posted. You are still in my prayers.

Julie-SunnyAZ

swt_reyes
Posts: 28
Joined: Nov 2010

Julie,
I am glad to hear you are doing good =)

I do not know when the surgery is but I have found out some disturbing news! I found out that the Dr. that is supposed to do my surgery is a General Surgeon. Is this ok? I thought I was seeing an Oncologist, but it turns out I live in a small town and Dr. Nichols is the best surgeon in this area. If I go to an Oncologist I will travel. What are your thoughts on this matter???

Sincerely,
Christy

sunnyaz
Posts: 582
Joined: Oct 2010

General Surgeons are good. It's also good that you have the best available to you. Most importantly is that you trust him. What does your gut instinct tell you about him? They typically know a lot about many types of diseases. If you can't get an Oncologist/Surgeon, try to see if you can get in with an Oncologist to advise your surgeon so that they can work together. The General Surgeon just needs to know where to look for metastasis first. Thyroid cancer typically spreads to section 6 of the neck first and then to sections 3, 4 and 5.

Seven days til my third surgery and I think I am finally getting somewhere since I fired my ENT and found a doctor I am really comfortable with. I wish you the same luck.

Julie

Jessica_in_Midwest
Posts: 6
Joined: Nov 2010

I had a total thyroidectomy Nov. 10, 2010. My experiences may not be like others', but I haven't had much trouble with any of this. They gave me a shot to numb my neck before the biopsy, and I was only minimally sore the next few days. As for the surgery, it was painless, and almost 3 weeks later I get tired a little more quickly than I used to, but it is nothing compared to what I was expecting. I have been napping on Sunday afternoons since surgery and going to bed about an hour earlier than I used to, but my fiancee has commented that he thought this would be harder on me.

Hope this helps!

nasher
Posts: 507
Joined: Apr 2010

well i had a fine needle biopsy done before my surgery they were unable to tell at that time if it was cancer or not.. they decided on me to only take 1/2 the thyroid later they found it was cancer and took the rest of it

if you want to read my story it is on the forum below at

http://csn.cancer.org/node/204377

I did try to document everything that was going on but i missed alot

if you have any questions please ask

also if you go to www.thyca.org they have alot of good thyroid cancer related info there

good luck and please keep us informed on how you are doing

swt_reyes
Posts: 28
Joined: Nov 2010

Thank you all very much for sharing in this post discussion, it really does mean a lot to me; more than you would ever know! I will be reading your story and I know every case is different so all I can do at this point is have faith in God our Lord and move forward with the surgery as planned! It means so much you are interested in the outcome, you guys are like a new family to me =) I will be on frequently to update and chat.

Thank so much I am grateful,
~Christy~

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