Anyone Had Recurrance

Hi guys  I am new to this, I have been reading for a while but never posted a message.  Just a question to ask which has been bugging me every day.  I was diagnosed with Pap Cancer in Sept 07 and had a total thyrodectomy in November 07.  My endo had advised me that the cancer had not spread to any other part of my body and I am taking Thyroxin 150mg a day.  My queston is has anyone had the same as myself where the cancer was contained but still had a recurrance of cancer anywhere in the body.  Maybe I am just paranoid but I woke up last september on my daughters 2nd birthday to find a tumor the size of a golf ball poking out of my neck and I never knew it was there.  i now just feel as though I need to be more observant of my body and what it is doing. do we ever stop worrying that it might come back it is all I ever think of and dread the thought of having to tell my family again. I would appreciate any responses.

Your story sounds familiar.  I had TT in Sept./Oct. 2006 at age 33.  Went through RAI, etc.  My doc had me doing 6 month checkups because my tumor markers from blood tests just never went to zero.  Neither he nor I could feel anything in my neck.  In Oct. 2007, the numbers shot way up and they ended up going back into the right side of my neck and removing 33 lymph nodes.  Thank God - only 5 were malignant.  I'm back on the cycle of 6 month blood tests - just had one last week.  Numbers still aren't zero.  It's a bummer.  BUT I'm still here and so will you be.  Keep on your endo - make sure that you're having regular blood tests.  That'd be my advice.  I'm with you on the dread - if rather walk through fire than see that look on my mom's face again.

Good luck!

 

On 6/11/2008 LauraS wrote:

Your story sounds familiar.  I had TT in Sept./Oct. 2006 at age 33.  Went through RAI, etc.  My doc had me doing 6 month checkups because my tumor markers from blood tests just never went to zero.  Neither he nor I could feel anything in my neck.  In Oct. 2007, the numbers shot way up and they ended up going back into the right side of my neck and removing 33 lymph nodes.  Thank God - only 5 were malignant.  I'm back on the cycle of 6 month blood tests - just had one last week.  Numbers still aren't zero.  It's a bummer.  BUT I'm still here and so will you be.  Keep on your endo - make sure that you're having regular blood tests.  That'd be my advice.  I'm with you on the dread - if rather walk through fire than see that look on my mom's face again.

Good luck!

 

Thanks for your message.  I know the feeling everytime I looked at my mother it broke my heart I kept telling my husband to keep an eye on her and never realised how it had effected him as he hid it well.  I managed to stay focused during it all but it hit me after I left the hospital as it all happened so quickly I didnt have a lot of time to think about it.  My endo was seeing me every 3mths but now is seeing me every 6mth and I have blood tests every 6mths, it did not affect my lymph nodes I was told that it was contained but still had to undergo RAI.  i know that should make me feel better but I am so paranoid about this disease that I go into panic mode when it is close to my endo appts.  I was 31 when I was diagnosed and my little girl turned 2 and she new exactly what was going on. She is my saviour and my familys as she kept us laughing when it all got ugly.  I am happy to say that I pulled through it and do laugh about it and make jokes, but the reality is it just never really feels like it is over. 

 It nice to be able to speak to someone who has been through it.

 

Good luck to you to and I hope all goes well for you.

 

Thanks again

I too understand the fear, but I don't know if it is fear or what that I want some answers.  I am on the other end of things as far as outlook.  I am a large 55 YO man with a large nodule and it had spread to surrounding lymph nodes.  Had the TT in Dec. 06 followed by RAI (high dose) in 07, then one year followup showed another tumor and second round of RAI in April (high dose).  So my survival rate is not real good, but I can't seem to get anyone or find anywhere to get info on what to expect.  I understand it is important to be positive but I want to understand what may happen and just what to expect. 

I am in a similar situation.  I am older than you and female.  I had TT with lt. neck dissection 2/07 with a large dose of RAI 4/07.  I just had RAI this past week and an even larger dose.  I get my post RAI scan next week.  I worry constantly.  We have to be followed very closely.  There are many options for treatments and just have to hope things stabilize for a few years and can catch a break.  I am looking forward to the normalcy for a few months in between.  

 

On 6/12/2008 mjseyb wrote:

I too understand the fear, but I don't know if it is fear or what that I want some answers.  I am on the other end of things as far as outlook.  I am a large 55 YO man with a large nodule and it had spread to surrounding lymph nodes.  Had the TT in Dec. 06 followed by RAI (high dose) in 07, then one year followup showed another tumor and second round of RAI in April (high dose).  So my survival rate is not real good, but I can't seem to get anyone or find anywhere to get info on what to expect.  I understand it is important to be positive but I want to understand what may happen and just what to expect. 

I Know what you mean it is both, I still search the net trying to find out as much information as possible with regardes to what will happen next and where it may come back. My endo just tells me that there is a small chance it could come back but not to worry unfortunately that easier said than done.  But you are right the important part is to stay positive and not to dwell, however we are allowed to be scared and have our times of melt down, as I told my husband and his aunty when his uncle went through prostate cancer we (cancer patients) do not only carry our own fears and emotions we carry everyone elses and try to stay strong so that our loved ones do not panic.  I hope all goes well for you and everyone fighting this disease and try to stay positive take care and god bless.

I had pap. cancer around 9/01.  I was 25 and a mother of 2 small children. I had a TT, RAI, clean follow up scans, etc.  I took care of myself.  Had bloodwork done often enough and my TSH was under supression.  Yet last year, I had a recurrence.  I had a radical neck dissection and RAI in Apr.  My scan came back clean.  

It happens, I guess.  I try hard to stay positive and pray that it never comes back.   

Hi, I've just gone for my 3rd RAI.  What is a radical neck dissection?  My doctor has not recommended going back in for surgery.  My initial tumor had spread to a lymphnode.

 

On 6/17/2008 kimran wrote:

Hi, I've just gone for my 3rd RAI.  What is a radical neck dissection?  My doctor has not recommended going back in for surgery.  My initial tumor had spread to a lymphnode.

I believe that it is when they remove the infected lymph node.  If your doctor does not recommend going back for surgery how are they planning to fix the problem?

 

On 6/12/2008 mjseyb wrote:

I too understand the fear, but I don't know if it is fear or what that I want some answers.  I am on the other end of things as far as outlook.  I am a large 55 YO man with a large nodule and it had spread to surrounding lymph nodes.  Had the TT in Dec. 06 followed by RAI (high dose) in 07, then one year followup showed another tumor and second round of RAI in April (high dose).  So my survival rate is not real good, but I can't seem to get anyone or find anywhere to get info on what to expect.  I understand it is important to be positive but I want to understand what may happen and just what to expect. 

 

are you by any chance a Stage IV?  I am and I am 47 yo female