CSN Login
Members Online: 16

You are here

I don't know.

Brisingr
Posts: 9
Joined: Nov 2014

I first want to clarify that I do not intend to offend any one in any way, this is solely my own feelings on my own experience and in no way reflects my opinions of others and their experiences.

I am in my early twenties and in my senior year of college out of state from my family and doctors. In July a I had a goiter and a tumor roughly the size of a tennis ball, biopsy results were unclear and it was growing rapidly so in September I had surgery to remove my entire thyroid and a few lympnodes. Results came back and I was diagnosed with Stage III Follicular Cancer and in November I had Iodine radiation and body scans that determined it had not spread past my thyroid.

It all happened so quickly and I didn't go through the hardships that many of those who are diagnosed with various forms of cancer have to work through. I feel like my situation seems so trivial in comparison that I don't deserve to use terms like "diagnosed" or "cancer survivor." I don't necessarily have any questions, this is just something I have been struggling with for a few months and wasn't sure where else to go to say anything about it.

upperwestside
Posts: 6
Joined: Apr 2012

Most thyroid cancer is easily treated without difficult side effects and then causes no further issues. That's why people say if you have to get cancer, thyroid cancer is the one to get.

However some thyroid cancer is deadly...such as Anaplastic. The one you have can be more aggressive in older people.

If you look at the link below you will see that you are Stage I even though you may be be T3.

 http://www.cancer.org/cancer/thyroidcancer/detailedguide/thyroid-cancer-staging

Brisingr
Posts: 9
Joined: Nov 2014

I think you misinterpreted my original post but thanks for the info regardless.

alapah's picture
alapah
Posts: 287
Joined: Oct 2009

I think I understand where you are coming from. When I was first diagnosed I had that same sort of feeling - while it most certainly was a cancer diagnosis it seemed different from the journey faced by so many others. Geez, it's really hard to articulate...I keep typing and erasing...

I did end up with an aggressive form of papillary thyca and a situation that required external beam radiation and even then, while staying at an Amer Cancer Society lodge with lots of cancer patients, I still felt as though my situation was different, as most of them were undergoing both EBR and chemotherapy. I don't know that any of them felt this difference at all - I think it was just me looking out.

I have been on oral chemotherapy for about three years to try to slow the advance of lung mets and even that seems so different. 

Brisingr
Posts: 9
Joined: Nov 2014

Sorry for the delay in response, I have been busy with the holiday season. But yes thank you very much for your input, I do believe you understand where I am coming from. Likely even more so with your extended experience. I wish you the best of luck in this new year!

Caradavin's picture
Caradavin
Posts: 42
Joined: Jan 2010

My first bout with cancer was uterine cancer, but it was small and contained and early.  Hence, I needed no form of chemo or radiation, and every time someone asks and I say no, I feel like some kind of fraud.  I was treated for skin cancer a year later (basically, they just scraped it off), again no need for chemo or radiation. Now, I have something that may or may not be thyroid cancer, and it is also small, contained, and most likely non-threatening in any way, meaning I also won't need chemo or radiation for it.  If it is any form of cancer, I will have "survived" three cancers; however, I don't feel like much of a survivor.  The only strain I experienced was the fear and worry. I didn't lose all my hair, get sick every day, etc... I didn't have to fight that hard.  I understand what you mean.

Brisingr
Posts: 9
Joined: Nov 2014

Thank you for your response. Sounds like you have simultaneous good and bad luck! I am glad that none of your multiple cancers threatened your life. I do believe you understand how I am feeling and I am thankful I am not alone in this. 

marie17
Posts: 3
Joined: Jan 2015

@Brinsingr.  Your cancer is Stage I because of your age.  Check here:  http://thyca.org/about/types/#u45

All Follicular Thyroid cancers for people under the age of 45 (no matter what the size is) are Stage I as long as they have not spread to lymph nodes or other areas.

What I find curious about your post is the irony:  you are "struggling" because "it all happened so quickly" and you classify it as "so trivial".  Those quotes were all your own words.  I also don't mean to offend any one (as you also stated), but if you truly find your experience to be "so trivial" and "don't deserve to use the terms like 'diagnosed' and 'cancer survivor'" then why are you "struggling"? 

I'm confused.  You had stage I follicular cancer.  Sounds like you are cured and good to go.  So why are you struggling at all?  If you feel you don't deserve to call yourself a survivor are you posting this here to make others feel like they need to suck it up? 

Baldy's picture
Baldy
Posts: 244
Joined: Mar 2011

Any cancer diagnosis is a slap in the face, even the least aggressive types of cancer.  Marie, you use the word "had" and the phrase "cured and good to go", you need to realize that staging and treatment are not guaranteed accurate.  There is a very small chance that brisinger's cancer has already metastasized but not yet detectably so.  There is also a very small chance that brisinger's treatment was not effective in removing all the cancer that was there.  Almost certainly brisinger is cured, but there is that almost*.  Brisinger is worried and wonders if that is a valid thing to be, given the circumstances.  Of course it's valid.  At least that's the way I read what brisinger said.

*Assuming this is what brisinger's doctors are saying, the post doesn't actually say this.

Alan

marie17
Posts: 3
Joined: Jan 2015

My intent was to draw attention to the irony. People who come here come for support.  Often times, thyroid cancer patients are made to feel like their cancer is easy and isn't worth being called a "cancer".  Brisinger's post is an example of this. This is a perception that needs to be ended.  No person should come here and feel that they should just get over it and move on.  That's why I "tongue and cheek" wrote the words "had" and "cured and good to go".  I am quite aware that thyroid cancer has one of the highest recurrence rates within the first five years of all cancers.  As a thyroid cancer survivor myself, I was saddened to read this original post.  It's this kind of attitude that leaves most of us survivors feeling that we should keep quiet and act like we never had cancer. 

Baldy's picture
Baldy
Posts: 244
Joined: Mar 2011

Now that I understand what you were trying to say in your earlier post, I still question your method.

I've been on this site for almost four years now and many people have complained about being told they have the "good" cancer.  While papillary thyroid cancer (what I have, I don't know about folicular) is almost always treatable and is usually curable, it's still cancer.  I can see why people don't want to hear the "good" cancer comment, I can also see that it is somewhat true.  My initial symptom was a swollen lymph node in my neck, before it was byopsied I was very worried it was lymphoma or one of the throat/mouth cancers and was almost grateful when I was told it was papillary thyroid cancer and what that meant.  I remember telling the doctor something very much like, "it could have been much worse."

What I try to do is ignore labels and cope as best I can.  Those of our friends and family who haven't had to go through this sort of thing don't realize how this can color your life a darker shade.  Just recently a few members of my family were talking about stress when one of them turned to me and asked me, "what are you worried about? you don't have anything to worry about!"  I ignored it, what could I have said that wouldn't have caused pain?  Painful for them to be told they're insensitive (even if politely) and painful for me for having to expose that particular raw nerve (even with a smile on my face while doing so.)

I'm somewhat of a loner, so this approach seems to work for me, but may not work for others.  Just my thoughts.

Alan

marie17
Posts: 3
Joined: Jan 2015

First off, just want to say that you have expressed yourself as a very kind person. 

Secondly, did you need to go on a low iodine diet and have Radioactive iodine treatment?

Did you have small children you had to stay away from during your radioactive treatment?

Did you have to avoid any pregnancy following the treatment (more for women than men)?

These experiences can really change ones perception. 

Oh, and Hypo-hell is so not trivial.  Yowza!  It was so tough!  Also, just my thoughts. 

 

Baldy's picture
Baldy
Posts: 244
Joined: Mar 2011

Thank you.

Yes, I had to do the LID, twice.  Once for my RAI and again for my one year I-123 scan.  For me, it wasn't too bad of a problem, the biggest hurdle was getting enough fiber in my diet.  My most effective source is high fiber bread but since store bought bread is made with iodized salt that was a no no.

No, I'm 54 years old now and there are no children here.  I stayed away from my small nieces and nephews for a good long time, probably longer than necessary, just to make sure.

No, I'm male, hence my moniker, "Baldy".  A few of the women who post on this site have asked the same question.  I suggested to one of them she should talk to the nuclear medicine people administering her RAI to find out.  If she did, she never posted back to relay what they said.

For me, I don't think the treatment experience was that much of a problem.  It gave me something to think about and consentrate on.  It was later when I had time to ponder everything that things really hit me.  My experience with thyroid cancer started when I noticed a swollen lymph node in my neck, my Primary Care told me not to worry it was almost certainly due to an infection somewhere in the area.  So, hearing my endo say I was almost certainly cured following my surgery and RAI wasn't as reassuring as it would have otherwise been.

I never had to do "hypo hell", I was given the thyroid stimulating drug (Thyrogen) both times.  I'm extremely glad I missed out on that.

Alan

Brisingr
Posts: 9
Joined: Nov 2014

I meant I was struggling with my feelings of inadequacy. I in no way believe I implied anyone needed to suck anything up, rather that they were incredibly stronger than me because they endure greater hardships. 

Baldy's picture
Baldy
Posts: 244
Joined: Mar 2011

Brisinger,

I understand what you're saying and I think to some extent you're right.  I also think that if we were having to deal with one of the fast and deadly cancers, we probably would be coping as well as anyone else in that situation.  We do what we have to do in the situation we find ourselves in.  I also think that the ... trauma ... I guess ... for lack of a better word ... of having to deal with any cancer is just as real to us as it is to someone dealing with a graver diagnosis, though it may not be as immeadiate.

Alan

Brisingr
Posts: 9
Joined: Nov 2014

Also, Marie I don't believe it is fair for you to imply I am not allowed to be feeling this way. I think a more constructive method for your goals would be to guide those feeling similarly to how I feel towards compassion and understanding that the things they go through may be different than others' experiences but in no way less important, rather than implying that "this kind of attitude" is a wrongful act to be scolded. 

bdenny1954's picture
bdenny1954
Posts: 6
Joined: Sep 2014

hi brisingr. how are you doing.appreciate your insight and hope you get along very good.thank God it has not spread past your thyroid as so far neither has mine.by the way your situation is NOT trivial in any way shape or form.it is just as important as any on here.feel free to let us know how you are doing from time to time.congrats on graduating collage.big step.i don't think marie mean't any harm.i think she was asking if you have any kids and a few other questions.what dosage of thyroid replacement therapy are you on now?i am taking 150 mcg levothyroxine just went down from 175mcg.

Brisingr
Posts: 9
Joined: Nov 2014

Thank you bdenny, I greatly appreciate your kind words.

I am currently at 200 mcg levothyroxine. I started at 125 and worked progressively up to 200. 

Subscribe to Comments for "I don't know."