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Here we go again!

sunnyaz
Posts: 582
Joined: Oct 2010

Just had an US of the neck. Palpable nodes are suspicious only five weeks after RAI. Looks like I will be having my fourth surgery if the FNA comes back positive again. This damn cancer is relentless!
Julie-SunnyAZ

JC_hama
Posts: 14
Joined: Dec 2010

I am so sorry to hear about this yet again. It seems that you have no rest from this. You have been such a great source of support for all of us on here and I will be praying that this last surgery will be the last! Keep us informed.

Cathy

MBuff
Posts: 11
Joined: Jan 2011

Wow. So sorry to hear this. Do they think you're resistant to the iodine now? You're certainly not alone in that. Check out the Thyroid 411 group on Facebook. There are a few on there with similar issues. Best-- M.

sunnyaz
Posts: 582
Joined: Oct 2010

Thanks for your responses. Yes, this is a likely possibility. I have made an executive decision for myself. I will not be doing any type of Radiation in the future. I just don't want to risk other types of cancer. I prefer to go under the knife each time it comes back. I am aware that this will mean someday I may not have a neck and it could go into my head, lungs and anywhere else. I think I am at the point that I am ready to face my mortality. I will check out the 411 group on Facebook and thanks for the information.
Julie-SunnyAZ

miladyx
Posts: 85
Joined: May 2009

How old are you sunnyaz?

sunnyaz
Posts: 582
Joined: Oct 2010

I am 43 years old. I was 41 when I was diagnosed and I have a B-RAF mutation gene (found after the second surgery). I was only stage 1 when I had my Thyroidectomy so they said that my prognosis was good. Endocrinologist didn't do RAI due to that fact. Then had met's to the Lymphs only five months later, then my first RAI. ENT missed the target nodes and had to have another right neck dissection this past December with second RAI on the 4th of February last month. New enlarged nodes are in section 2 where I had my second surgery.
Julie-SunnyAZ

veronica57
Posts: 98
Joined: May 2010

I am so sorry to hear this. I know how you must feel. But we've come too far to give up now. I will be praying for you.
Veronica

MBuff
Posts: 11
Joined: Jan 2011

I think you will find there are quite a few people who are iodine resistant and who have been stable for a very long time. That's why I think the 411 group will be valuable for you. I don't know where you're getting your care, but I would certainly consider traveling to a major center that specializes in advanced thyroid cancer if you do turn out to be iodine resistant.

sunnyaz
Posts: 582
Joined: Oct 2010

I requested to be on the 411 group and haven't been accepted yet. It's been about 24 hours since my request.

I would like to look into some natural solutions, Homeopathic medicine. I will see what my Oncologist says when I do the FNA. I am seeing one of the best Oncologists in the country, but of course, he leans more toward traditional medicine. If I mention Homeopathic he will probably laugh at me. Thanks for your encouragement and the information.

Blessings,
Julie-SunnyAZ

skcalkins
Posts: 39
Joined: May 2010

Sorry to hear about this Julie. Looks like I'll be going for round two on surgery and RAI. Saw the ENT on Friday and he assured me he had no doubts about being able to get the mass behind my collar bone as well as all the lymphs he will be removing. To be on the safe side he will have his partner and the Thoractic surgeon in there as well though.Always better to be safe than sorry I always say.

Please don't lose hope though your strengh and words of encouragement have gotten me through some down days.

I'll keep you in my prayers.

Shawna

sunnyaz
Posts: 582
Joined: Oct 2010

I am so glad to hear that they will be able to do the surgery! I hope and pray this will be the last for you.

I haven't lost hope so much as I am accepting my mortality. Cancer has taken 100% of my family so far. I mean the ones that have passed so far. No other disease has had such an impact on our family. Seems that RAI just isn't working for me because of the B-RAF. I will have to take this one surgery and one day at a time from here on out.

Let me know when your surgery will be.

Blessings,
SunnyAZ

skcalkins
Posts: 39
Joined: May 2010

I am the first in my family to have Thyroid Cancer, both of my Grandmothers on Mom and Dad's side are Hypothyroid but I'm the first to have cancer that they found. One of my Aunts is being sent because her thyroid is slightly inlarged. She said nothing to worry about but I am concerned because thats how mine started.

Hey Sunny, what is a B-RAF? I looked it up but still not sure I understand it. Was there a reason to test for it or do you have to have symptoms of it? Sorry this has hit your family so hard.

In my prayers,
Shawna

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Shawna,

I am also the first one in my family to have Thyroid cancer. The rest have been other cancers unrelated, but all have had some kind of cancer. I do know that my mom's side had Thyroid disease, but never cancer.

The B-RAF is just recently discovered. I am not sure exactly how to describe it but I know that it makes my type of cancer harder to treat and more aggressive. About 43% of people have this mutation gene. I was really surprised to find that out. Wikipedia has a somewhat easy to interpret explanation, other than that the internet only sites medical studies that really are hard to understand. I hope this helps a bit.

Thanks so much for your prayers and your hope for me.

Smiles,
Julie-SunnyAZ

amorriso
Posts: 186
Joined: Oct 2010

Yeah - those darn lymph nodes can be nasty. I too had problems with mine a few weeks ago - went for scans and based on the advice of several surgeons/oncologists underwent a modified bilateral neck dissection. I'll follow up with another RAI in a few weeks.

The first surgeon should have taken the nodes, and should have follow up more closely. Fortunately I found a good surgeon who sent me for a PET scan - and based on that we did the surgery. He's quite confident there is nothing left - and the scan did not show anything in the rest of my body.

I hope things go well for you. I'm back on the recovery list for a few weeks now...and sporting another lovely scar.

Best of luck

diane2h81's picture
diane2h81
Posts: 41
Joined: May 2010

I'll keep you in my prayers. Never give up. Accepting is fine. That is where I am myself. But it is hard to have others understand when we say we have accepted what is to come concerning our cancer. Hang in there and continue to be strong. You are a survivor, we all are.

sunnyaz
Posts: 582
Joined: Oct 2010

I really appreciate hearing from you. Yes, I am a survivor and I will do what I can to stay with my family as long as I can within reasonable means. I am not willing to do the "Mask" i.e. the external beam radiation. I am horribly claustrophobic and the procedure alone will kill me.
Blessings,
Julie-SunnyAZ

chase2585
Posts: 5
Joined: Apr 2011

i too already have had 3 surgeries 1st to remove left side of thyroid. then 5 years later right side. had iodine rad treatment. 8 months after treatment nodes again. had surgery. ent for another ultrasound yesterday...more very small lymph nodes. endo said not to biopsy largest which is 8 mm. will give me another ultrasound in august. Said they are too small for surgery as the surgery could cause more complications since you cannot see them with naked eye. very discouraged. I guess this means my throid cancer is non curable.
I hate when everyone says "oh its only throid cancer, it wont kill you". Apparently, mine will. Sorry, feeling very glum today.

sunnyaz
Posts: 582
Joined: Oct 2010

Sorry you are so glum today. Your cancer is not incurable. My nodes came back negative MUCH to my surprise. Nodes do not take up iodine as well as other tissue. The good news is that anything that might have gone to the lung area did take up RAI and prevented a much more difficult situation. I would get in with a Cancer specialist. ENT doctors don't know cancer. My second surgery was botched by an ENT. My Endocrinologist basically gave him the finger and sent me to a specialist in Endocrinology/Oncology who also does surgery. Great specialists are out there and they can help you. Travel if you must to find the best. I would be willing to bet you won't have to go too far.

Yep, the general consensus is out on the "it's only thyroid cancer" bullshit. Most of us on this site agree that others would not want to be in our shoes. I don't know many lung, kidney, brain, breast, prostate or other cancer survivors that have to take a pill to survive on a daily basis. The thyroid is such an important gland and controls so much of our body. The absence of it can cause such physical and mental distress.

I go through rough times too, when I just feel defeated by my cancer. I also have a B-RAF mutation gene so that is very discouraging at times. I simply decided that I will never stop fighting. The cancer "may" take me some day, but I see it as a stale mate if it does. It can't survive inside of me if decide not to host it anymore.

Recently I did some research on line to find out how I can be proactive in stopping and/or preventing my own cancer. I found a few things that were very interesting.
1. Cancer hates oxygen. Can't survive in an aerobic environment. Increase your oxygen intake every minute of every day. Breath deeply and often. I saw one site that recommended drinking Hydrogen Peroxide (1 tsp) to eight ounces of water (very diluted) three times per day on an empty stomach. The Hydrogen Peroxide (food grade) increases the amount of oxygen in your cells which helps fight cancer. I use Hydrogen Peroxide mixed in water to rinse and whiten my teeth at night after brushing. I don't rinse the remaining out of my mouth, just swish several times and spit it out. I have white on my tongue where the Peroxide remains in small amounts.
2. Eat a more Alkaline diet rather than an Acidic diet. Look on line for foods that are both. If you are eating Alkaline foods your body doesn't have to work as hard to maintain it's pH balance. Higher pH is another technique used in fighting cancer. Cancer hates a high pH environment as much as it hates oxygen.
3. Reservatrol is an ingredient in Red wine, red grapes and some other foods that is cancer fighting. You can even buy it in pill form. One of my patients told me that her mom started reservatrol tablets after her second breast cancer surgery and the cancer never returned. Her doctors weren't very optimistic after her second recurrence, but she swears by reservatrol.
4. Lastly, cleaning the lymphatic system on a regular basis. Sweat, sweat and sweat some more. Many Homeopathic cancer doctors recommend regular use of the Infrared Heat Sauna. You can buy one for anywhere from $700-$5,000 and lower depending on sales. I plan to save up to buy the single person sauna as soon as possible.

I have learned that I must be prepared to try new things, keep an open mind and be positive. Being negative hasn't helped me yet, so I have discarded negatively entirely. Nothing positive ever came out of negativity. So..... chin up, get MAD at the cancer and put on your cancer armor! There is a lot of support here, rely on us, but first and foremost, get in to see an Oncologist/Endocrinologist as soon as possible to get another opinion.

Chase, you are not alone.

Blessings and well wishes for healing and happiness,
Julie-SunnyAZ

chase2585
Posts: 5
Joined: Apr 2011

julie. thanks for the reply. I actually see an endocrinologist who is supposed to be top notch. I'm sorry, but I dont know what an EMT is. My endo is the one who said the nodes right now were too small and I shouldnt remove them just yet. He wants me to wait for another ultrasound 4 months down the road (Aug). I actually like my surgean. He is a specialist in thyroid surgery.

This cancer confuses me. So this doesnt mean my cancer is progressing. My surgean did tell me when I had my first surgery that is is very common that thyroid cancer keeps popping up in the nodes.

I also had early stage breast cancer 8 years ago but I have to tell you this thyroid cancer is so frustrating.

I like your suggestions about diet . I am going to look into the diet and will buy the reservatrol. The only thing that worries me is that they tell you to stay away from alcohol when you have breast cancer.

sunnyaz
Posts: 582
Joined: Oct 2010

You can get it in pill form. You don't have to drink red wine to get it. In fact I don't drink at all. I am allergic to most alcoholic beverages. I like to freeze red grapes and eat them as a snack.

An ENT (Ear Nose and Throat) doctor is what I thought you said was watching the nodes. Do you have an Oncologist (cancer specialist)? If not I would have your Endocrinologist refer you to one for a second opinion.

I know this is frustrating. My Oncologist told me that this cancer rarely kills but can get very annoying.

Hang in there!

Julie-SunnyAZ

chase2585
Posts: 5
Joined: Apr 2011

julie. thanks for the reply. I actually see an endocrinologist who is supposed to be top notch. I'm sorry, but I dont know what an EMT is. My endo is the one who said the nodes right now were too small and I shouldnt remove them just yet. He wants me to wait for another ultrasound 4 months down the road (Aug). I actually like my surgean. He is a specialist in thyroid surgery.

This cancer confuses me. So this doesnt mean my cancer is progressing. My surgean did tell me when I had my first surgery that is is very common that thyroid cancer keeps popping up in the nodes.

I also had early stage breast cancer 8 years ago but I have to tell you this thyroid cancer is so frustrating.

I like your suggestions about diet . I am going to look into the diet and will buy the reservatrol. The only thing that worries me is that they tell you to stay away from alcohol when you have breast cancer.

chase2585
Posts: 5
Joined: Apr 2011

julie. thanks for the reply. I actually see an endocrinologist who is supposed to be top notch. I'm sorry, but I dont know what an EMT is. My endo is the one who said the nodes right now were too small and I shouldnt remove them just yet. He wants me to wait for another ultrasound 4 months down the road (Aug). I actually like my surgean. He is a specialist in thyroid surgery.

This cancer confuses me. So this doesnt mean my cancer is progressing. My surgean did tell me when I had my first surgery that is is very common that thyroid cancer keeps popping up in the nodes.

I also had early stage breast cancer 8 years ago but I have to tell you this thyroid cancer is so frustrating.

I like your suggestions about diet . I am going to look into the diet and will buy the reservatrol. The only thing that worries me is that they tell you to stay away from alcohol when you have breast cancer.

BellsAngel69
Posts: 102
Joined: Dec 2009

I have Hurthle cell and had a TT in 2004. Since then I've had a mestasis to my left hip bone in 2008, my liver in 2010, just last year, and now it's back in the same damn spot in my hip, and I'll have my 5th surgery next Wednesday. This cancer is relentless. It seems either you are lucky and never have a reocurrence or are unlucky and have to deal with them for the rest of your life.

It sucks, plain and simple, but I know it could be so much worse, so I feel lucky in a way. It's just so much deeper than people think. My HCC is asymptomatic, except for the *****iness, lol, you'd never know to look at me on the outside. It's inside that betrays me.

sunnyaz
Posts: 582
Joined: Oct 2010

I am so sorry to hear this. You are such a trooper though. Never give up fighting and keep your positive attitude. I know how it feels to look totally normal but inside you are in so much turmoil. Nobody else understands but us cancer patients. It's so difficult for those that still have a thyroid and never had to deal with this to understand what we go through day in and day out, year after year wondering if we will have recurrence. The constant tired and exhausted feeling. I am like you, I feel lucky in a way. I haven't had lung metastasis thus far. I have a thirteen year old daughter that depends on me and my goal is to raise her before/if the cancer gets to the point I can't fight it anymore.

You are in my thoughts and prayers for your surgery on Wednesday.

Blessings and healthy healing wishes,
Julie-SunnyAZ

BellsAngel69
Posts: 102
Joined: Dec 2009

I feel the same way. I have a 20 year old daughter and 17 year old son and a husband who all depend on me and believe I'll always be there for them, so I plan on it. Thing is, sometimes they don't understand and aren't there for me when I need it. I guess it's hard to be objective when you're on the outside looking in.

sunnyaz
Posts: 582
Joined: Oct 2010

They just don't get it. It seems like they become numb to it because we are so strong that they don't need to worry about us. My husband and daughter are the same way. When they get older or have a similar experience they will realize what we went through and how tough we were. Hopefully it will be a good example to them. My mom has suffered with MS since I was born. I remember feeling sad for her when she was sick but I was also selfish in the aspect that I felt deprived of a mom that could not do the things other moms could do with their daughters. She did the best she could and it's only now that I realize her pain and her strength. My friends moms did things with us that I wished my mom could do. She is still alive and really tough for her age. I think she is the oldest living MS patient to date. I love her dearly and I truly believe that if it weren't for her dedication to fighting and keeping a positive attitude I wouldn't be the person I am today.
Blessings,
Julie-SunnyAZ

BellsAngel69
Posts: 102
Joined: Dec 2009

Papa Roach.

What doesn't kill me only, will make me stronger in the end, in the end!!

You're mom sounds like an amazing woman. She took the hand she was dealt and made the best of it, and is still prevailing. MS is very debilitating, and from what you've said, no matter her disability, she raised you to be another amazing woman. Reflecting back, you became a stronger person because you had to face adversity. Even though you didn't see it back then, you were learning many lessons about life, the good and bad.

And I'll close with another quote from The Stones:

You can't always get what you want, but if you try sometimes, you get what you need.

Need and want are so totally contradictory, aren't they?

sunnyaz
Posts: 582
Joined: Oct 2010

Music is so inspirational. Your quotes are wonderful. Sometimes we just have to face the fact that it's not our decision as to what happens to us. There are some things in life that just happen for God's reasons. We may not understand at the moment, but in time things start to make sense. It's a "Jagged Little Pill" but it's still good medicine.
Julie-SunnyAZ

BellsAngel69
Posts: 102
Joined: Dec 2009

Through all of this, has been my only reliable, steady source of comfort. I'm not saying my family and friends haven't been there for me, it's just sometimes no matter how much they try they don't totally understand and never will. Being physically there for someone isn't the same as being there mentally. With music, I can put the headphones on, crank up the volume, and lose myself. Music will comfort my mind and soul and make me heal the sores. It's just the way it is.

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