Two separate cancers

[JC63]

Hello Everyone,

Last summer, I was diagnosed with NSCLC, had surgery/chemo, and am doing okay so far. At the same time, I was also diagnosed with follicular/papillary thyroid cancer that they initially thought spread to my lung, but turned out to be two different cancers. 

Two weeks ago, I had my thyroid removed and am not doing so well emotionally. I was wondering if anyone else has been diagnosed with two cancers and how you are dealing with it all. I'm just feeling really overwhelmed.

Thanks,

JC

[Scruboak]

JC - I am just in the beginning of all of this new turmoil and I also cannot fathom the depth of my emotions right now. But, I want you to know that this site has been very helpful for me. You are not alone. Welcome.  

[ColleenRae]

Hi JC - I am sorry you are going through this and completely understand the emotions.  This is a very useful, supportive site.

I was dx'd at the time of surgery with NSCLC in October 2018. I had my right upper lobe removed. No chemo or radiation.  I just had my 3rd post CT scan this past Friday, so waiting for results... the last 2 scans since surgery are showing a suspicious nodule in the upper left lobe, so I remain anxious re: the status of that. My surgeon / oncologist is in Seattle and it does not sound like I will be able to meet with him anytime soon due to COVID-19. I am scheduled to see a pulmonologist at the end of April where I live (my regular pulmonologist is booked until June!).

This is the only cancer I have (so far), but I can relate to the fear. Prior to my Oct 2018 lobectomy - in March 2018 - I had a colonoscopy. They had to do a CT after the procedure and I learned I had thyroid nodules. The local radiologist did a biopsy and told me he was pretty sure it was cancer. His biopsy was inconclusive (not enough cells), so I scheduled another biopsy with the Univ of WA in Seattle. Fortunately, their biopsy was benign. BUT... I still have the nodules and worry about whether they will remain benign.  I knew I was eventually going to need lung surgery (we'd been following the first tumor for a couple of years by this point) - I was very worried about having two cancers at once as well. 

You said you are not doing so well emotionally... I'm hoping you will discuss this with your Dr.  (endocrinologist) if you haven't already. I was told it can take quite a while to adjust one's emotions / hormones following thyroid surgery, that it may take some time before the right balance in medication is achieved, so maybe that is adding a great deal to your emotions right now.

I am sure you are emotional - you've had a lot to contend with and I applaud your courage and for sharing that here. I hope others with a similar experience can help you with this.  I know there are others here who have had more than one cancer... You've just had to deal with two in a very short period of time.

Colleen

[Susan Cornett]

JC63 -

I also had two cancers. I was diagnosed with lung cancer in February 2016 and a suspicious nodule was noted on my thyroid. Turns out there were two nodules - one was metastatic lung cancer and the other was thyroid cancer. I had my thyroid removed in July 2016. I had a rough few months until the docs were able to get my TSH numbers stable. 

At that point, I was spiraling down. I was absolutely overwhelmed with anxiety and depression. I went on antidepressants at that point. They're not for everyone but they were my saving grace. 

What's next for you?

[JC63]

On 3/15/2020 at 11:03 PM, Scruboak said:

JC - I am just in the beginning of all of this new turmoil and I also cannot fathom the depth of my emotions right now. But, I want you to know that this site has been very helpful for me. You are not alone. Welcome.  

Thank you, so much!

[JC63]

On 3/16/2020 at 1:12 AM, ColleenRae said:

Hi JC - I am sorry you are going through this and completely understand the emotions.  This is a very useful, supportive site.

I was dx'd at the time of surgery with NSCLC in October 2018. I had my right upper lobe removed. No chemo or radiation.  I just had my 3rd post CT scan this past Friday, so waiting for results... the last 2 scans since surgery are showing a suspicious nodule in the upper left lobe, so I remain anxious re: the status of that. My surgeon / oncologist is in Seattle and it does not sound like I will be able to meet with him anytime soon due to COVID-19. I am scheduled to see a pulmonologist at the end of April where I live (my regular pulmonologist is booked until June!).

This is the only cancer I have (so far), but I can relate to the fear. Prior to my Oct 2018 lobectomy - in March 2018 - I had a colonoscopy. They had to do a CT after the procedure and I learned I had thyroid nodules. The local radiologist did a biopsy and told me he was pretty sure it was cancer. His biopsy was inconclusive (not enough cells), so I scheduled another biopsy with the Univ of WA in Seattle. Fortunately, their biopsy was benign. BUT... I still have the nodules and worry about whether they will remain benign.  I knew I was eventually going to need lung surgery (we'd been following the first tumor for a couple of years by this point) - I was very worried about having two cancers at once as well. 

You said you are not doing so well emotionally... I'm hoping you will discuss this with your Dr.  (endocrinologist) if you haven't already. I was told it can take quite a while to adjust one's emotions / hormones following thyroid surgery, that it may take some time before the right balance in medication is achieved, so maybe that is adding a great deal to your emotions right now.

I am sure you are emotional - you've had a lot to contend with and I applaud your courage and for sharing that here. I hope others with a similar experience can help you with this.  I know there are others here who have had more than one cancer... You've just had to deal with two in a very short period of time.

Colleen

Thank you, Colleen! I was in to see the endocrinologist today and it turns out the surgeon wasn't supposed to start me on thyroid medication for two to three weeks, as that is how long it takes for my natural hormones to deplete. So, he told me I had too much in my system, thus the overwhelming emotional issues. I still feel anxious and depressed, but have been prescribed klonopin, which is for anxiety and helps alot. As soon as I feel it coming on, I take one, and then I feel pretty much normal. I'll have bloodwork in one week and hope things will start to even out. 

[JC63]

15 hours ago, Susan Cornett said:

JC63 -

I also had two cancers. I was diagnosed with lung cancer in February 2016 and a suspicious nodule was noted on my thyroid. Turns out there were two nodules - one was metastatic lung cancer and the other was thyroid cancer. I had my thyroid removed in July 2016. I had a rough few months until the docs were able to get my TSH numbers stable. 

At that point, I was spiraling down. I was absolutely overwhelmed with anxiety and depression. I went on antidepressants at that point. They're not for everyone but they were my saving grace. 

What's next for you?

Hello Susan,

When it rains, it pours!  I was in to see the endocrinologist today and he said I should not have been started on levothyroxine so soon, as it takes about three weeks for your body to deplete your natural hormone. Basically, I was being overdosed on hormones, thus the anxiety, depression, weight loss, panic attacks, etc. He will check blood levels in one week and go from there as far as dosing. He said I will need to keep my TSH suppressed to reduce cancer recurrence. He also mentioned RAI after the coronavirus calms down, but not sure I want to go through that. After having a bilobectomy, chemo, and thyroid out, not sure I can mentally handle radiation yet. He seems to think all I need is a TSH, but I insisted on a T3 and T4, as some people have trouble converting from T4 to T3 and then have no energy. I've thought of the natural pig thyroid, but he said it was too hard to keep numbers correct since the dosing is different in every pill. 

Have you been okay since your numbers have been under control? Are you on the synthetic or the natural hormone? It sounds like it took a few months to normalize. I hope it happens soon for me too. 

Thanks, JC

 

[ColleenRae]

JC,

So glad you were able to address this! You sound much better! Very sorry the surgeon jumped the gun on this and that you had such a roller coaster ride.

You also sound very well-educated with regards to what your needs are and will be (thanks for educating me as well).

Will continue to send positive thoughts your way...

Colleen

[Susan Cornett]

JC - 

I'm on the synthetic hormone. I've had thyroid problems on and off since I was young so this has been my go-to when I needed my numbers adjusted. I started my synthroid about a month after my surgery and the numbers were normal for almost a year. By that point, I had a recurrence of the lung cancer and that treatment messed up my numbers. We got them normal again in late 2018 and they've been good since. My normal (pre-surgery) TSH is around 1 so that's where my doc keeps it. The high range of normal is 5 but I don't do well when I get to the high end of normal.

 

[JC63]

On 3/18/2020 at 12:57 PM, ColleenRae said:

JC,

So glad you were able to address this! You sound much better! Very sorry the surgeon jumped the gun on this and that you had such a roller coaster ride.

You also sound very well-educated with regards to what your needs are and will be (thanks for educating me as well).

Will continue to send positive thoughts your way...

Colleen

Thank you, Colleen!

[JC63]

On 3/22/2020 at 1:26 PM, Susan Cornett said:

JC - 

I'm on the synthetic hormone. I've had thyroid problems on and off since I was young so this has been my go-to when I needed my numbers adjusted. I started my synthroid about a month after my surgery and the numbers were normal for almost a year. By that point, I had a recurrence of the lung cancer and that treatment messed up my numbers. We got them normal again in late 2018 and they've been good since. My normal (pre-surgery) TSH is around 1 so that's where my doc keeps it. The high range of normal is 5 but I don't do well when I get to the high end of normal.

 

Hi Susan,

I had my labs drawn today, but no results yet. I'm still experiencing panic, anxiety, shortness of breath, and a cough, which makes me nervous. I'm hoping they are able to help me, as I haven't been able to do much feeling this way. I'm still regretting the surgery, but it is what it is. I'll let you know what they say. 

Thanks much,

JC

[Susan Cornett]

Hello JC. Any updates? How are you feeling?

[JC63]

11 hours ago, Susan Cornett said:

Hello JC. Any updates? How are you feeling?

Hi Susan,

My Free T4 was 1.01, which I guess is good? He did a total T3, which was 114, range is 58 to 159. I asked for a free T3, but he refuses stating it is not accurate. My TSH was 2.14, but the goal is 0.1 to 0.5 to reduce cancer recurrence. My preop TSH ran between 0.92 and 0.36 and free T4 preop was 0.92. Since he refuses to do the free T3, I'm not sure what that is. I feel that is important for energy level. My T3 preop was 3.1. I'm trying to aim as close to my preop numbers as possible, so I feel as normal as possible.

The endo increased my levothyroxine from 100 to 112, but I felt like it peaked around 1p-2p and I started having symptoms of anxiety, everything seemed bright, brain fog, etc. I took that for two days and restarted the 100 today. I'll call him on Monday, as I feel this dose is too high too soon. Otherwise, I still have the same symptoms as before, nothing has really changed. I'm getting concerned because they say these symptoms are not normal of thyroidectomy; however, they didn't start until after the surgery. I'm going to start looking for a new endocrinologist tomorrow, as I feel he is dismissive of my symptoms and doesn't care.

I'm wondering if I should try a different thyroid medication such as the natural thyroid or wait and see what happens. I'm pretty depressed, so not sure how long I can wait. I really need to get back to work, but feel like that's never going to happen, at this rate. Any suggestions you have are welcome.

Thanks much,

JC

 

 

[JC63]

On 3/15/2020 at 11:03 PM, Scruboak said:

JC - I am just in the beginning of all of this new turmoil and I also cannot fathom the depth of my emotions right now. But, I want you to know that this site has been very helpful for me. You are not alone. Welcome.  

Thank you so much!

[Susan Cornett]

JC - if you are not happy, definitely find a new endo. I got frustrated trying to get scheduled with the one I was referred to. The wait to get an appointment was so long with several that I finally just moved it all to my primary to manage. That has worked for almost 4 years. Just keep pushing for answers. Hang tough.

[JC63]

17 hours ago, Susan Cornett said:

JC - if you are not happy, definitely find a new endo. I got frustrated trying to get scheduled with the one I was referred to. The wait to get an appointment was so long with several that I finally just moved it all to my primary to manage. That has worked for almost 4 years. Just keep pushing for answers. Hang tough.

Thanks, Susan! I'm going to start looking for a new primary doctor. I just didn't expect it to be so difficult to manage. I'm glad it's been working well for you and gives me hope!

JC