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Hello

Hello

Posted by TaliaB on Dec 25, 2018 11:05 pm

I’m still in limbo with a diagnosis. After 2 biopsies, blood work and CT scans my docs aren’t able to confirm or rule out thyroid cancer. I have a nodule that was found in 2011 and biopsied benign 2015. It felt different over the last year so an ultrasound was done and then urgent biopsies as my neck now contains numerous lymph nodes that are ‘funky’, (Radiologist’s words). Two biopsies are inconclusive but show thyroid cells in my lymph glands as well as parts of my thyroid that look benign but some that look possibly like follicular cancer. I’ve seen the local surgeon who is now sending me to see an ENT specialist 4 hours away. I’ve been told his recommendation to the ENT is a full thyroidectomy as well as neck dissection. I’ve also been told it could all be for nothing... but no one seems to be able to find any other problem. Hashimoto and Graves I believe have been ruled out. And a thyroglobulin test was done that showed really elevated levels. But my doc can’t say why that was ordered... so long story to say it looks like I have thyroid cancer, I’m prepared to find out I have thyroid cancer but it’s not 100% so I feel pretty lost. Thanks for the space ❤️

Re: Hello

Posted by Brighty on Dec 25, 2018 11:44 pm

TaliaB‍  welcome to cancer connection!  I'm sorry you are in limbo now.   Limbo can cause anxiety  for many.    I hope you will find the answers you are seeking soon!!! In the meantime  try and distract  yourself by doing what ever you like to do. . Whether it's funny movies.. tv.. art.. a brisk walk. .. seeing friends. ..journaling your fears.. meditating. ... and keep your life and your routines normal too so you are not constantly  in fear and thinking.    I know how hard that can be.    You have come to the right place and if it turns out to be cancer you already  have us as a support  system.    Let us know what you find out!!!!

Re: Hello

Posted by Kims1961 on Dec 25, 2018 11:58 pm

TaliaB‍ Welcome to this awesome community. Brighty‍  gave you some excellent advice.

I was diagnosed with breast cancer last year.  There was a period of time - from finding my lump - to seeing my doctor and then onto biopsy and report back.  It seemed like eternity and the waiting....ugh.. I'm glad you reached out.  I found connecting with this community- even just to read other's posts was helpful and certainly feel open to ask questions/vent whatever.

Distraction is a great tool to help keep yourself busy.  Exercise was key for me - it distracted me from the waiting and also helped me sleep better.  Building supports was also very helpful.  My sister was wonderful during this time as well as my husband.   Do you have anyone that you can share this info with - sometimes connecting with a friend for coffee or a walk - can help on those restless days.

Glad you posted and let us know how you're doing.

Kim

Re: Hello

Posted by TaliaB on Dec 26, 2018 12:24 am

Thank you both. I’ve definitely been working on keeping myself from dwelling. It’s been 3 months now since the first time I was told it could be cancer so it’s been hard waiting. I find the days easiest but 4am the hardest. I started on antidepressants to help me sleep and I’m glad I did! Fortunately I have a fabulous husband who listens then distracts me. And a close friend who is a psychologist. Her thesis happened to be in growth through medical trauma specifically, cancer. So she’s been a huge ally in helping shift how I see this experience. Right now I’m learning about boundaries and family ;) I’ll definitely keep you all updated and January 8th can’t come soon enough!

Re: Hello

Posted by Brighty on Dec 26, 2018 12:33 am

TaliaB‍  you are doing all the right things so far.       I'm glad you are taking anti depressant to sleep.   Some people may not agree with me, but I take them too as well as sleeping pills....... because the period when I was  a caregiver and when we were waiting for results and tests and scans and the whole thing.......my anxiety and stress level were through the roof and that's the only way I could calm down and get some sleep.       I'm glad you have a supportive husband who not only listens but distracts you.     A friend as a psychologist is a bonus!!!!   I also learned much about boundaries and family in my summer therapy program.  It is very important to set boundaries with people and tell them up front what you will or will not tolerate.     That took a lot of therapy for me and a lot of practice because that doesn't come easy to me.       I still struggle with it because if you don't set boundaries right away people will end up walking all over you and seeing what they can get away with.     Anyways, getting off topic here, but keep us updated.      

Re: Hello

Posted by Cynthia Mac on Dec 27, 2018 8:55 am

Hi, TaliaB‍ 

I’m chiming in to agree with Brighty‍ about the families and boundaries! I encountered a challenge last year with a sibling, and when I asked, very clearly, for something I needed from a situation and didn’t get, my sister broke off all communication with me. This has caused me to set a new boundary, to ensure that I protect myself going forward.

I’ve concluded that we didn’t get to choose many of our family members, and there is no obligation to allow them to keep hurting us. I have a friend who used to say she “fired” her sister. She would say, “the sister I fired.” I used to think it was strange. I don’t think that anymore!

Be true to yourself, and surround yourself with people who will support you back.

Re: Hello

Posted by LPPK on Dec 28, 2018 4:20 pm

Hello TaliaB‍   Everyone has a different make up of people in their support group.  My husband and grown children gathered round me and were there for me. My brother and sister in law (a 5 year breast cancer survivor) were a great source of information and support to everyone. I found that each member of my support group tended to take on a different role for me and also supported each other.  We were a universe unto ourselves and rarely let others into it. My husband took on the role of 'bouncer' and kept visitors and comments at a very minimum. Once through treatment my universe slowly opened up and I returned to a full, active lifestyle. 

Re: Hello

Posted by Lacey_adminCCS on Jan 7, 2019 10:52 am

TaliaB‍ 

Wishing you all the best tomorrow. How are you feeling now that the appointment is tomorrow?

Thinking of you, 

Lacey

Re: Hello

Posted by TaliaB on Jan 7, 2019 4:07 pm

Thanks for checking in Lacey! I’m mostly okay. More grateful to know what’s coming up next then I am stressed about getting results. Although my biggest worry right now is it’ll just be the start of another round of testing dragging things on longer. I’m ready to take on whatever comes next and would love this limbo to stop! I’ll let you all know what I find out tomorrow :)

Re: Hello

Posted by Lacey_adminCCS on Jan 7, 2019 4:20 pm

TaliaB‍ 

You got this! I look forward to hearing how it goes.

Take Care,
Lacey

Re: Hello

Posted by TaliaB on Jan 9, 2019 12:31 am

Here’s the update The surgeon tried to take another biopsy hoping to get lucky but he’s not thinking he’ll get anymore info then the last two. He’s also ordered a contrast CT. They’re scheduling surgery for me as well. I’ll have a partial thyroid removal of the right side as well as one lymph node removed. He’s expecting to find cancer but wants to take all the proper steps. If it is confirmed I’ll go back in for a second surgery to remove the remainder of my thyroid and the lymph nodes on the right side of my neck. Followed by radioactive iodine therapy. The first surgery will be in 3-4 months with a short recovery. Then wait for pathology and find out next steps. I’m okay. Im glad to know there’s a plan. Thanks for all the support so far

Re: Hello

Posted by Lacey_adminCCS on Jan 30, 2019 12:14 pm

Hi TaliaB‍ 

I'm sorry I missed your update.

Have you received a date?

We have a discussion about what to expect for Radioactive Iodine Treatment that you might find helpful now or later.

Lacey

Re: Hello

Posted by TaliaB on Jan 30, 2019 2:16 pm

No worries :) Unfortunately, this seems to be the longest process on the planet (it feels like it anyway) and I’ll I’ve got so far is the date for my CT scan which is next week. Honestly I’m struggling with how long this is all taking but trying to stay busy and distracted. Glad to know there’s info on RAI. It feels like one of the scarier aspects to me for sure. Thanks for touching base

Re: Hello

Posted by Lacey_adminCCS on Jan 30, 2019 4:05 pm

TaliaB

Have you talked to your doc about the length of time you're waiting? 

Lacey

Re: Hello

Posted by Cynthia Mac on Jan 30, 2019 4:06 pm

TaliaB‍ , I know it seems like a long time. The waiting with the absence of knowing is hard. But it's really been just over a month, so far, and how often have we said, "I can't believe where this month went?" Having said that, I know you're probably not on that page this month!

When I felt that Dad's process was progressing slowly, I reminded myself that a lot was going on behind the scenes, and that it takes time to organize all the appointments and tests. As well, some cancers advance more slowly than others, and while that's little consolation, it might be an indicator for you that things are progressing at an appropriate speed. 

I'm glad that you're doing your best to keep busy. 

Re: Hello

Posted by TaliaB on Jan 30, 2019 7:00 pm

My doc has said that it’s unfortunate but that he’s only given so much OR time so that’s an urgent wait :( I talked to him about an alternate surgeon doing the first surgery but he wants to do it. He’s considered the best on the island so I’m trying to focus on that and that while it’s urgent I’ve been told I have the time. I’m trying to get used to the idea that you can be waiting and still live normally(ish). I’ve mostly had good days but a few exhausted, emotional ones too. Unfortunately since I was first told it could be cancer it was in the end of September so waiting until April for surgery is tough to be okay with. But I do appreciate how thorough my docs are being and that they’re making sure they don’t just cut out such an important part of my body without being sure they should. My ENT Has a long history with treating thyroid cancer so I’m turning it over to him and trusting his decisions. I’ve stopped googling as much too ;)

Re: Hello

Posted by Cynthia Mac on Jan 31, 2019 8:25 am

Yes, TaliaB‍ , we try an warn people about Googling medical information — as you’ve learned, sometimes what pops up isn’t the best thing for us to find, especially at a low moment!

You have had a long wait. I hope that next week will begin to wind that down for you.

Re: Hello

Posted by TaliaB on Feb 13, 2019 9:33 am

Well the third biopsy still wasn’t able to determine cancer although they continue to find atypical cells. The CT scan shows lymph nodes the ENT told me are consistent with thyroid cancer though. We’re going ahead with removing half my thyroid in March and some of the surrounding lymph nodes that are the most suspicious. The ENT says he is still expecting cancer as the final outcome from pathology but doesn’t feel it’s a good call to remove my thyroid without the 100% confirmation. So basically same spot I was before but with a surgery date and a little more reality that it’s likely cancer setting in. I’m ready for surgery and glad the date is sooner then I expected. I had way more emotions and stress waiting to talk to the surgeon then I expected. But he was so lovely and clearly understands the toll this takes in not knowing. He was very reassuring and surprisingly empathetic. I’ve found having thyroid cancer a very odd experience with docs. It’s almost dismissed as no big deal so I was grateful to hear him appreciate how stressful this has been for me. I made a counselling appointment as well so I start with them today. So fingers crossed for a simple surgery

Re: Hello

Posted by Lacey_adminCCS on Feb 13, 2019 10:03 am

TaliaB‍ 

I'm glad you got set up to talk to someone and you feel like the Surgeon is empathetic to your feelings and not brushing your cancer off as no big deal. Cancer is cancer no matter what part of your body and hearing those words isn't easy.

Is your family supportive?


Have you connected with Aya2017Linda-N‍  or other people with experience with Thyroid cancer?
Lacey

Re: Hello

Posted by TaliaB on Feb 13, 2019 1:51 pm

My family is special ;). They’re not not supportive but have never been great at support. I’m pretty on my own. So I’m trying to build my own supports. My hubby is lovely but works away so it’s challenging too. And no. I’ve been kinda holding off on connections until I knew more. It’ll sound weird but I felt a bit of an imposter since I really didn’t know. And I didn’t want to bring my maybe having cancer worries into a space of folks who are dealing with it. I’m a bit silly sometimes. But I will be reaching out. I’ve realized how much I need to.

Re: Hello

Posted by Cynthia Mac on Feb 13, 2019 2:00 pm

TaliaB‍ : my family is “special,” too.  😇

PM me, if you want to share more privately!

Re: Hello

Posted by Lacey_adminCCS on Feb 13, 2019 2:18 pm

TaliaB‍ 

You're not an imposter here at all don't be silly!

Glad you have a supportive hubby it's important to focus on the people in your life that are there and supporting you. Add us all to the list please :)

Lacey