Wednesday, June 6, 2012

My rants while somewhere in between

It's been over three weeks since my surgery. I'm somewhere between post-surgery and back on my feet. Better than the alternative, I know. Still feeling pretty crappy in general.

I've had some strange swelling above my incision for about a week. Let's backtrack...first week post-surgery, definite swelling. It went away week two and reappeared week three. And I understand the shooting pains in my neck and that they are good. That means the nerves are regenerating, coming back with a vengance. However, I have this strange achy feeling from my ear to my jaw where the swelling is.

My endocrinologist noticed it on Monday, said I could ask my surgeon about it. I called the surgeon's office, and they worked me in to see him. He said it is not uncommon to see fluid collection when removing lymph nodes, to ice it as needed and use ibuprofen as needed. If it does not go away by July 1, I should go back to see him about possibly draining this or treating it with steroids.

Speaking of my endo...I'm getting a second opinion. He has already said no radioactive treatment without seeing thyroglobulin results. Didn't order them until the end of the summer. He said if we see anything at that time then yes, radioactive treatment. That doesn't match up with what he told me prior to surgery. Oh, and he told me that I "just need to learn to live with it." I do...I get it, but that stinks. I just need someone else to tell me that is a good course to take. Referral endo, please confirm some of this madness for me.

I read somewhere once (in one of my many Google sessions) that with every cancer recurrence, your possible survival rate goes down. Can anyone confirm this for me? I will research it more. Anyway, it stuck with me.

And MCA from the Beastie Boys...his death keeps sticking with me. His cancer was of the salivary gland, which has a survival rate of 91%. MCA was diagnosed in 2009 and died earlier this year. He was in the 9% of those who die from salivary gland cancer. Am I in the 4% of those who will die from thyroid cancer? I certainly will fight it, not plan on it at all, and will stay positive, but these are sometimes the things I ponder.

Someone I know who was recently diagnosed with thyroid cancer was told "you will not die from thyroid cancer." Not true. If you have cancer, you could die from it. Yes, the survival rate is high for thyroid cancer, thank goodness, but let's be real. It can happen. Some research has suggested even a link between thyroid cancer and breast cancer. Does thyroid cancer open the cancer floodgates?

I guess I am sensitive to this as I was told that I would have my cancerous thyroid gland and lymph nodes out in 2008 and that would be it. It would be fine, easy peasy and back to work in no time. I struggled...could not talk except in a whisper for weeks, was in the hospital for four days, not the quick overnight as predicted., and had a tough recovery period. And look at me now, with it again...third time in five years. I'm part of the 30% of thyroid cancer survivors who have a recurrence

Another thing told this to this person: "thyroid cancer does not spread." Hello...it can spread to the lymph nodes (exhibit A, me times two) and can also go to your lungs and bones. I have read about people who have this situation. Granted this is in a very small percentage of people, but it can happen.

I hope this person has a much better situation than I have had with thyroid cancer. In fact, I pray that for her. Desperately. I know some who have had it once and are cancer free to date...for years and years, and I am happy for them!  I was not prepared for my current reality but for the yank-your-thyroid-and-never-get-it-again reality. That is not my reality. But who is prepared for this madness?

Lots of percentages in this post. Can someone please just call me a thinker and not a worrier? I want the information and want to analyze the "what ifs"...is that necessarily worrying?

My rant is concluded.

12 comments:

  1. Charlcie, I found your blog a few days ago as I was trying to get information about my recent diagnosis or should I say partial diagnosis. I am 73 and have had hyperthyroidism for about a year, several nodules were discovered and I received one treatment of radiation, 25 militaries, which I thought would get rid of the nodules plus the thyroid. I"ve been on levothyroxine and my blood levels are finally normal. My endo said he wast worried about cancer because of my blood work. A follow up scan showed either new nodules or the old ones had grown, which surprised me. Still my blood work didn't worry the endo but he suggested a biopsy which came back suspicious and greater than 50% chance of cancer. I was blindsided. I'm waiting for an appointment with a surgeon at UCSF. I was told it was "the best cancer to have" by a few people, including one friend who is a surgeon. I was very calm about this until I found your blog and then started to get worried. I've done a lot of internet searching and last night found a research article done by UCLA checking age, gender and mortality. Your age, even with recurrences, is in your favor. According to this study, my age, if I do have cancer, is against me. Google Thyroid Nodules and Cancer in the Elderly by Jerome Hershman, M.D. (I don't have a link) for the article. It didn't give me comfort but it might you.

    I wish you so much luck and good health in your future. I will follow your blog as I feel connected to you now. I hope in my case it turns out to be benign, and in your case, you are rid of this problem soon and can return to your beautiful family with no worries. My very best wishes. Helen

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  2. Sorry about the typos in that comment. Google auto. Bleach!! Millicuries. He "wasn't" worried.

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  3. Thanks so much for your encouragement and sharing your story. Ah, the ol' "best cancer to have" phrase again. I wrote a post about that a few years ago. You can read it here: http://charlcie.blogspot.com/2009/10/on-my-soapbox-about-best-cancer-to-have.html. It kinda makes me crazy!

    Thanks for the information about the UCLA study. I am going to check into that further.

    I very much hope that yours turns out to be benign. Please keep me posted!

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  4. I found your blog because I googled which is the best cancer to have and up popped your post. NO cancer is the best one to have. Good luck.

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  5. Ah, stink. I have the same questions about recurrence and longevity. Quick, someone read this and find the answers.

    Am also debating a second opinion with endo as they've been "watching" my third set of tumors for three years now. I'm getting more tired and achy, but also older.

    I'm glad you rant. Then we know we're not alone!
    MommaMindy.wordpress.com

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  6. Ah, Momma Mindy...thanks! Yes, the tired and achy seems to be getting worse for me as well. And I see people older than me with much more energy so I'm jealous!

    But let's keep on keeping on, doing the best we can! :)

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  7. Hi, Charlcie,

    I didn't find your post above to be a rant at all. It seems like perfectly sensible concerns and questions. I wish I knew why some people have to endure such hardships while others seem to suffer only a few scrapes and bruises.

    I was once told that God knows what we are capable of and never gives us more than we can bear. That is comforting to a certain extent, I guess, but it also raises more questions.

    I wish you happiness and strength, and the courage to face each day with a smile. (Your smile is beautiful).

    In regards to those people who mean well when they tell you things like "it's the best cancer to have," I hope they stay oblivious but keep their comments to themselves.

    My daughter's friend is undergoing chemotherapy for bone cancer. This is her second bout with cancer, and it doesn't look good for her future. It's possible she may lose her leg even if they get the cancer.

    Nothing about cancer is fair, absolutely nothing. Don't feel bad for how you feel. Nobody has a right to judge, not even those who have gone through it themselves, for everyone is different and every situation unique.

    We are praying for you. My pastor knows you by name now. I don't even have to tell him anymore.

    God bless you and hang in there.

    Kim

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  8. i have been following ur blog since i was diagnosed with stage II thyroid cancer (papillary) back in jan 3 2012 i found u when i was looking up stuff i have a blog on here as welll talking about thyroid cancer and other stuff but maining thyroid cancer and how i have been feeling u can come on mine if u want to read it i have u on my "follow" thingy i was just wondering how u are doing u havent posted anything a 4 weeks i hope u are feeling better and doing good im coming up on my 6th month checkup soon but they have me do the LID and not shots like i saw u had i wish they would give me shots i hated the LID i hope u are doing ok with all u have been through

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  9. Kim, so nice to see your familiar face and comments on my blog! I appreciate your kind words and encouragement. And thanks for the prayers. I am glad your pastor knows my name! :)

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  10. porridge2396, thank you for your comments and checking on me...and for gently pushing me to blog (new post coming soon)! I am sorry that you are going through thyroid cancer and soon the low-iodine diet. I hope you are also doing OK with your new lifestyle that is thyroid cancer survivorship. Please let me know how your LID and six-month check up goes.

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