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Nodules, Cancer?!, Thyroid Robbing Me Of My Family!
Dear Thyroid:
How could you do this to me? At 34 years old, my husband and I have been struggling to begin the family we so desperately want. We had you tested time after time, and you gave us “normal” results. You were just teasing us!
I was 2 weeks away from the insemination. My husband and I were so excited to meet with the fertility specialist, to go over all the final details….then he saw you. He did an exam and he felt you. He told me you felt enlarged, and I should have an ultrasound just to make sure things were ok before, I got my dream…before we became pregnant with our long awaited first child.
Thyroid you are a BASTARD! 6 nodules, the largest being 3.2 cm and so solid, the biopsy had to be repeated 3 times before any fluid would come out. You JERK! Not only do I have to worry about cancer again (I had Ovarian at the age of 15) you have stolen our child!!!
If these nodules are malignant as my Endocrinologist believes, then it may be up to a year before we can try insemination again.
How could you do this to me? And to my Husband and family who have been so supportive in our infertility journey. They shared our joy when we told them we could try insemination, and now you have scared them, too. How dare you?! You will be taken away from me in the next few weeks and I can’t wait until you are gone. You have broken my heart, you mysterious butterfly.
Christina Lemal
(Bio) My name is Christina and I am a 34 year old woman. I work as a Research Administrator in Pittsburgh. I’m married to a wonderful man who supports me even when all I want to do is cry. I’m very early in this game but I know I will come out a winner. Friend me on Facebook.
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22 Responses to “Nodules, Cancer?!, Thyroid Robbing Me Of My Family!”
Leave a Reply to Christina
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Oh Christina, all the trials you have been through! I am so sorry. Three biopsies must have been very painful and scary to wait for the results. Have you received them yet? I am glad that you have a supportive husband and family- lean on them. I wish you the best of luck!
Christina, hang in there. I had my cancerous thyroid taken out 6 months ago. I am 39, no child after 3 years of marriage and trying, and have another 6 months to go until we can even address it per my Endo. I cried when my Gyno suggested “harvest and freeze” to me last week.
Best wishes to you. One day at a time…
Thank you for the well wishes ladies. All my biopsies were indeterminate and the large nodule continues to grow. I talked to a surgical oncologist who specializes in endocrine surgery and he said that because the nodule is so large it’s difficult to get a definitive result so I go in next Wednesday for a TT. I should know for sure if it is cancer a week after that. Seems like all I do is wait and wait and wait. Going on 5 months now since the fertility specialist found the nodules.
Michelle I am so sorry that you are going through this too. I waited along time to find the love of my life and start a family “the right way” and now it seems like a race against the clock. Like you said, one day at a time. When we DO get pregnant it will be even more special.
Christina, you are right! Now I understand this whole clock thing! And it will be special! Positive thoughts and patience 🙂
Christina –
Thank you for writing this letter and sharing it with us. You have such an amazing fighting spirit – Your anger and frustration is very real; I’m glad you’re getting it out!
Great work, kid.
I’m so sorry you’re still in ‘waiting mode’. I really wish they would move your story along.
How are you and your husband coping and doing?
xo
DT
Pattiecake (Great name) Beautiful show of support. You are a honey. Thank you so much for connecting with Christina.
I agree with you, so glad that she has the support she does from her husband and family.
xo
Michelle – I am so sorry that you are going through what Christina is, something similar, I mean.
How are you coping and handling it? Do you have a good support system in place?
I wish you didn’t have to go through this.
Thank you for sharing more of you with us, and for connecting with Christina.
xo
Christina – thanks for chiming in, and for connecting with all of us regarding your letter.
xo
Michelle – Love what you wrote. You’re right! Great show of support.
xo
Christina, thank you for sharing this letter with us! Your feelings are well justified! I know how hard it is to wait and wonder what is going on with your body. To say it’s stressful is an understatement. I hope your TT goes well and that you recover quickly. Keep us posted! We’re here for you!!
xoxo,
Joanna
I am so happy to have found you guys. I can’t tell you how many of my friends downplay my condition. I always hear “It’s only your Thyroid, relax”. Infertility is also a very confusing condition to have so to be honest, there are times when all I do is cry and wonder “why me”. I hate being that person.
My husband is my rock. He lets me cry, and scream, and feel sorry for myself. He validates my emotions because he has seen the changes in my personality and health first hand. I’ve gained 60 pounds over the last 2 years and he still tells me I’m amazing and beautiful. He doesn’t let it show that he is hurting too, for me, and for our infertility struggles.
I have felt very alone during the waiting game and not myself at all. I hope that after the TT next week I can get back to some sense of normalcy.
Thank you so much for reaching out and reading my story.
I’m feeling this letter very deeply. Christina thank you for being brave and sharing! Such a personal and painful journey this can be each day- day by day… even on the days when we THINK we have it licked.
*many hugs*
And so much good luck to you!
x
Melissa
I ache for your frustration and fear! I’m a thyroid cancer patient and a Pittsburgh native. I’m also the author of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s. When I was last speaking in Pgh I got off the ground a group of young adult thyroid cancer patients who are going to start meeting regularly. Super nice women. Let me know if you want me to put you in touch with any of them. One woman is pregnant and was going through lots of challenging issues around pregnancy and thyroid cancer treatment.
I have written about young adult cancer and infertility. And while I don’t know the particulars of all the medical barriers you face, if it gives you any hope, know that fertility risk calculators show that there is typically no additional fertility risks posed by thyroid cancer treatment. I’m happy to share with you any resources I have both for good docs in Pgh as well as for fertility counseling for ya cancer patients.
Know also that thyroid cancer does not impact your thyroid hormone production, so that your blood tests have been normal is not indicative of whether someone does or does not have cancer. I’m sorry you were stabbed a million times. I have been there and it stinks! And I am wishing all the best for you as you wait for your results, which I hope are negative for cancer. Feel free to contact me anytime if I can be of help to you. My blog has my email address and phone on it: http://everythingchangesbook.com/
Best,
Kairol
Christina,
My heart goes out to you!!
HD
Oh gosh, hang in there Christina!
I know exactly where you’re coming from, albeit I’m coming from a slightly different angle!
I’m 36 and hubby and I didn’t even consider starting a family until 2 or 3 years ago…and even then we didn’t give it much thought. Then when we finally got married 2 years ago (we’ve been together 12 yrs!) I decided that if we were going to do it, we needed to get on with it.
My GP and my Endo both said “Nah uh, no you don’t, not until we get your thyroid under some control”
Doh! I never even really considered that was part of the equation….yes, I know I should have known better. I just thought it was simple, they could change me off carbimazole (CBZ), and stick me on propythyouracil instead…but not, they both decided that as long as I stayed on CBZ that I wouldn’t be stupid enough to try because they’d both spelled out to me the problems & deformities involved with conceiving and being pregnant on CBZ, I swear they colluded on it!
And now, post-surgery, they are suggesting we wait until they have control over my levels before we even start trying….now I know they’re right, and I’m not grumbling (truly!)…and at least now, post-surgery I’m in a better position than I was before the operation, and on more pregnancy-friendly thyroid meds…but dang, its still very frustrating…every day that clock just ticks louder and louder….so very near, and still so far…and still no guarantee we won’t have problems down the line with regards to getting pregnant etc I just wish they’d green-light me so we can at least start trying!
The hardest thing for me is being around my friends who all seem to be popping babies out like M&Ms, and I find it so hard to be happy for them because it just makes me even more miserable, and then I feel even more crap for acting so selfishly and being so self-absorbed…so I just try and avoid all ‘baby’ situations, but its hard, just so damn hard 🙁
I am a bit confused with the history. You have a multinodular gland without biopsy proven thyroid cancer, is that correct?
The option offered to you seems a bit limited. To begin with, even if you have the most common type, papillary thyroid carcinoma, it tends to be well behaved, therefore the apparent lack of urgency. There are other less common types that are more aggressive. Follicular may be slightly worse than papillary, but it still tends to do well and is treated the same.
If starting a family is a priority, I see two obvious options. First, have a thyroidectomy and get thyroid hormone replacement to suppress TSH sensitive tissues. Avoid I-131 radioiodide around pregnancy and breast-feeding. If you really need a whole body survey, an F-18 FDG PET off thyroid hormone may suffice. The PET scans are most useful for evaluation non-radioiodine avid disease. The half-life of F-18 is about 110 minutes while I-131 is about 8 days! I-131 has a beta emission that account for most of the radiation to the body. (F-18 has a beta+ or positron.) A scan with I-123, half-live 13.2 hours, could also be done. I-131 therapy post surgery could be deferred if adequately suppressed.
The second option is to suppress your thyroid gland with a thyroid hormone replacement like Synthroid (T4). Monitor the thyroid gland with ultrasound and wait until you have had your children and have stopped breast-feeding.
The year recommendation is based on wanting to be absolutely sure there is no disease. Even you have a thyroidectomy, followed by an I-131 ablation weeks later, the radiation to a fetus would be minimal 6 to 8 half-lives out, just over 2 month. In other word, if you become pregnant shortly after I-131, the majority would not suggest termination. BTW, DON’T have a CT with contrast before a radioiodine. This is a common error that causes a delay of about 2 months. OK to get contrast after the radioiodine.
Mousebert–thanks for chiming in and offering your opinion. Though I’m not a doctor and cannot offer any professional advice, I would like to say that based on my personal experience, waiting a year to become pregnant after RAI is quite important. I’ve had a treatment dose of RAI twice, and both times I had to sign multiple times agreeing that I understood that I was highly recommended to not get pregnant for a year. I had a checkup w/ my endo a few weeks ago and we discussed my upcoming scan and we had the pregnancy talk again–he wanted to make sure I had no plans of getting pregnant in the near future. Again, I’m not a doctor and am only offering my personal experience.
Christina, I can’t even pretend to imagine the heavy burden you are carrying around with you. While I do understand the difficulties of dealing w/ cancer (diagnosed w/ papillary thyca in October 2008), I do not understand how incredibly hard it must be to think about cancer while wanting to start a family. My heart goes out to you. Whatever the pathology shows after your TT, we are here to support you in any way we can!
xoxo
Thank you for understanding Joanna. Mousebert…are you a doctor or a thyroid patient or both? Thank you for your response. That information will be helpful if this does end up being cancer. I think the TT is the best way to go and really the only way. I don’t want it hanging over my head that I may have cancer regardless of how agressive or not agressive it is. I’m having difficulty swallowing and breathing and can’t imagine being big and pregnant and having those issues. Plus the infertility process can take years, well it already has, and I feel it’s best to deal with this now. I did talk to my endo about thyroid suppression with meds but he said that is not practiced anymore because it is not effective?? I trust my doctors, I have to trust them, they are all I have to help me move forward.
I have to add that stopping the fertility treatments for the last 5 months has seemed like lifetime….stopping for a year or more will seem like eternity and is very depressing. I am lucky that my surgeon is very sensitive to that as he and his wife struggle with infertility as well.
I thank you all so much for your support! I’ve been on a roller coaster of emotions about this whole ordeal!
Joanna Isbill,
Do you have hyperthyroidism or were you treated for thyroid cancer? Hyperthyroidism puts a strain on the cardiovascular system as does pregnancy, and many of the medications are potentially teratogenic or cause birth defects. Some are know too, others there is just not enough data. With well differentiated papillary thyroid cancer with no know metastatic disease that is adequately suppressed, in my opinion, the risk is lower than hyperthyroidism for pregnancy.
If you had cancer and metastatic disease, that would be treated. If you had residual neck activity which was likely residual normal thyroid tissue, then it becomes more controversial. The standard is what you said. BUT if you insistent that you start your family now, what I said earlier would apply. The year number comes from having the disease under control, not the radioactivity and its effect.
Christiana,
I am a nuclear medicine physician, the one who gives the radioiodine. If I suspected well differentiated papillary thyroid cancer in a patient who could not have surgery soon, I would recommend suppression by giving Synthroid and getting the TSH into the borderline hyperthyroid level. There are recommendations that say if you have a well differentiated papillary thyroid cancer(WDPTC) of less than 1.5 cm in diameter and no capsular invasion, the only treatment after surgery followed by thyroid hormone replacement. With the current practice of monitoring thyroid globulin(Tg) levels, post surgical ablation with radioiodine to get rid of the normal residual tissue is the standard of care where I am. Any endocrinologist doing differently is not sending patients to me.
The idea behind getting the TSH(thyroid stimulating hormone) low is that WDPTC is TSH dependent. That is why for follow-up scans, stopping the thyroid hormone replacement or injections of rhTSH is needed.
Christina, I am so sorry to hear what you are going through. I do hope your health will improve soon and you and your husband will eventually have the child you are so longing for.
I did have similar problems when I was first diagnosed in 1978. I was 27 at the time, but thank goodness my goitres were non cancerous and I was diagnosed with Hyperthyroidism. I also was having infertility treatment at the time. I was on and off Carbimazole for many years, cos the Thyroid was unstable. Eventually the pills seemed to help because 7 years later in 1985, after my husband and I had resigned ourselves that we were going to remain childlessness, I became pregnant at 34, no one was more surprised than me I can tell you!! Mind you when my daughter was 3, I seemed to become immune to the anti thyroid drugs and after seeing the Endo, he suggested I try take Levothyroxine as well as Carbimazole to try and see if the gland would shrink, cos I could not have the radium treatment cos my daughter was still small. Unfortunately it didn’t and I ended up putting on about 50lbs (4 stone 20 kg) in less than 2 years, so I don’t recommend that treatment if anybody suggests it!! Anyway, after a couple of years of being on and off the pills, I ended up having the gland partially removed 20 years ago. The gland then went Hypo, and have been on Levothyroxine ever since. I did manage to get some of the weight off, but will never be as slim as I was in my 20s and 30s.
The Thyroid condition sucks and causes so many health problems, but for someone who has lived with the Thyroid for 32 years, its sort of a way of life for me. I take my pill daily, have my blood taken every 2 months, frequent change of dose cos the Thyroid fluctuates, but I have learned to take each day as it comes, some days I feel better than others, and on those days I try to get as much done as I can, on the lethargic days I am forced to take it easy. You sort of learn to live with it even though it gets you down at times.
Don’t give up hope of having a family, I am sure when your health improves you will be able to conceive. Just be positive, I did and I got my dearest wish, my daughter who has brought us lots of pleasure over the last 25 years. Never give up hope 🙂
Thank you, Miriam for sharing your experience with me. It sure is nice to hear that you did receive your miracle. I’m trying hard to stay positive and hope that I adjust to the meds easily. I have been living Hypo for a while now without meds becuase nobody knew there was a problem. So in the back of my mind I wonder if the meds will actually make me feel better and help me to acheive pregnancy. I have to have faith that all of this is happening for a reason. I have to have faith in my doctors and lean on great people like you and others at Dear Thyroid when it gets rough or I need advice. I have no idea what lies on the road ahead…but do we ever in life? 🙂
Take Care,
Christina
Hello Dr. Mousebert,
Thank you very much for chiming in here. Your input is greatly appreciated.
But please keep in mind that not all here are familiar with all of the, often very technical, medical abbreviations and lingo. Sometimes a little “common” languages and explanation goes a long way.
😉
Hope to hear more from you.
Cheers,
HDinOregon