Need To Get It Out So I Can Deal

Hi, I just found out about my path report following TT last week and shows I have an aggressive variant form of papillary thyoid cancer call Tall Cell. Waiting to hear from my endo to discuss further treatment.  The surgeon bypassed going after a 4 mm lymph node in the neck region pending this report, hoping, if it were all the more common version it could be taken care of with ablation therapy rather than performing the more aggressive neck dissection.  He did remove lymph nodes in the central compartment and it showed l positive node among 9.  Not sure what all this means except that this type which was multifocal has a greater incidence of recurrence and requires more aggressive treatment.  I suspected a more aggressive type when all of a sudden I was diagnosed with 6 nodules with lymph node involvement.  I am being followed every 4 to 6 months with my breast cancer team and have had carotid ultrasounds, MRA, MRI of the brain, you name it and no one picked up on it until a recent follow up vist with my endo for an unrelated problem.  He discovered a small nodule.  The largest was l.3 cm and there was also the common variety present but the majority was the more agressive form.  This has all been over-whelming.  It has been over 4 months since the original nodule was discovered and my surgeon is away until the 21st of August and my appt. with the endo is on the 21st so nothing more will be done until probably a week or two after that date to allow the doctors to decide on the best course of action.  Considering this is such an aggressive form now I don't feel comfortable about the 4 month plus wait. I don't know what to think. Just needed to get this off my chest in the meantime.  I'm home alone and don't care to relay any of this to my family except of course my poor husband knows the news.  It has been so difficult for him, all this shifts all the burden of every day tasks etc. on him while I'm down and cranky. Just needed to air.

 

On 8/7/2007 Leemg wrote:

Hi, I just found out about my path report following TT last week and shows I have an aggressive variant form of papillary thyoid cancer call Tall Cell. Waiting to hear from my endo to discuss further treatment.  The surgeon bypassed going after a 4 mm lymph node in the neck region pending this report, hoping, if it were all the more common version it could be taken care of with ablation therapy rather than performing the more aggressive neck dissection.  He did remove lymph nodes in the central compartment and it showed l positive node among 9.  Not sure what all this means except that this type which was multifocal has a greater incidence of recurrence and requires more aggressive treatment.  I suspected a more aggressive type when all of a sudden I was diagnosed with 6 nodules with lymph node involvement.  I am being followed every 4 to 6 months with my breast cancer team and have had carotid ultrasounds, MRA, MRI of the brain, you name it and no one picked up on it until a recent follow up vist with my endo for an unrelated problem.  He discovered a small nodule.  The largest was l.3 cm and there was also the common variety present but the majority was the more agressive form.  This has all been over-whelming.  It has been over 4 months since the original nodule was discovered and my surgeon is away until the 21st of August and my appt. with the endo is on the 21st so nothing more will be done until probably a week or two after that date to allow the doctors to decide on the best course of action.  Considering this is such an aggressive form now I don't feel comfortable about the 4 month plus wait. I don't know what to think. Just needed to get this off my chest in the meantime.  I'm home alone and don't care to relay any of this to my family except of course my poor husband knows the news.  It has been so difficult for him, all this shifts all the burden of every day tasks etc. on him while I'm down and cranky. Just needed to air.

Wow !!  I'm so sorry for your overwhelming news on your path report.  Stay strong and positive.  I will say a prayer for you on a good recovery.  I know it's hard to relax, but please try to keep your stress level down.  From my experience, 2 time thyroid cancer survivor stress can make things worst.  The waiting is awful but don't let it get to you. 

I will send your husband positive energy so that he will have strength to get you both through all this.  My husband has been my rock too after my second surgery almost a year ago.  I am now on disability and trying to get back on my feet.  I'm just happy to be a survivor.  Nowadays, I live each day like it's my last.  No regrets and live life to the fullest. 

I know that it's hard right now but once you overcome everything it'll open your eyes to new things.  Please keep me posted on your findings.  Take Care & God Bless.

"Choose the finer things that life offers.  Reject what is worthless with a smile."

Aloha, Paulette

Thank you Paula for your well wishes and concern.  I had just received an absolutely "right on" poem from a friend on this web site and was feeling  upbeat when I checked my e-mail and there was a cancer update and one labeled "cancer rates elevated after hyperthyroid treatment"  Curious, of course, I proceeded to read it and it states that their reasearch finds patients treated with radioactive iodine have an increased risk of developing other related cancers after a 5 year "latent" period.  Most importantly Breast, which I was already diagnosed with stage 1 almost 4 years ago (Sept.), stomach which an aunt died from and kidney.  The increased risk for stomach was 75%; 53% for breast and doubled (whatever that meant, no # listed) for kidney.  Also said patients between 50 & 59 (mua) had 44% increased risk, going down after that.  Of course, I'm slated for radiation ablation in the upcoming weeks.  This article was dated May 15, 2007.  What is one suppose to think??  Of course, it is somewhat known that exposure to radiation even what I was exposed to in treatment of my BC can predispose to the development of cancer but normally other than lymphoma it is assumed the effects can be 15 or so years down the road if at all.  This shows a correlation after just 5 years which they feel is the minimum latent period for radiation exposure.  I've seen you posting on this site and you seem very knowledgeable on the subject matter of thyroid cancer, have you seen or heard anything to this effect?  And if so, what was the doctor's take on this??  Thank you again for your well wishes!  Also, you mentioned you are now disabled.  Is this due to the thyroid cancer??  You also mentioned you had at least one recurrence, I believe.  What type of thryoid cancer were you diagnosed with?  Did you have a totat thyroidectomy the first time around.  Have you had lymph node involvement? and what was your course of treatment?  Have you had an recurrence to any distant regions or developed any other type of cancer.  Also how long ago were you originally diagnosed.  I guess I'm saying to know your particular situation may be helpful to me in the up coming weeks as we decide my course of treatment.  Thanks again!!

 

On 8/9/2007 Leemg wrote:

Thank you Paula for your well wishes and concern.  I had just received an absolutely "right on" poem from a friend on this web site and was feeling  upbeat when I checked my e-mail and there was a cancer update and one labeled "cancer rates elevated after hyperthyroid treatment"  Curious, of course, I proceeded to read it and it states that their reasearch finds patients treated with radioactive iodine have an increased risk of developing other related cancers after a 5 year "latent" period.  Most importantly Breast, which I was already diagnosed with stage 1 almost 4 years ago (Sept.), stomach which an aunt died from and kidney.  The increased risk for stomach was 75%; 53% for breast and doubled (whatever that meant, no # listed) for kidney.  Also said patients between 50 & 59 (mua) had 44% increased risk, going down after that.  Of course, I'm slated for radiation ablation in the upcoming weeks.  This article was dated May 15, 2007.  What is one suppose to think??  Of course, it is somewhat known that exposure to radiation even what I was exposed to in treatment of my BC can predispose to the development of cancer but normally other than lymphoma it is assumed the effects can be 15 or so years down the road if at all.  This shows a correlation after just 5 years which they feel is the minimum latent period for radiation exposure.  I've seen you posting on this site and you seem very knowledgeable on the subject matter of thyroid cancer, have you seen or heard anything to this effect?  And if so, what was the doctor's take on this??  Thank you again for your well wishes!  Also, you mentioned you are now disabled.  Is this due to the thyroid cancer??  You also mentioned you had at least one recurrence, I believe.  What type of thryoid cancer were you diagnosed with?  Did you have a totat thyroidectomy the first time around.  Have you had lymph node involvement? and what was your course of treatment?  Have you had an recurrence to any distant regions or developed any other type of cancer.  Also how long ago were you originally diagnosed.  I guess I'm saying to know your particular situation may be helpful to me in the up coming weeks as we decide my course of treatment.  Thanks again!!

Please read my story on this cancer compass website "Cancer Again ! Now What?", dated Jan 25, 2007. 

As for being knowledgeable, it's just due to what I've experienced.  Since I've been dealing with thyroid cancer since 1995 things have never been the same.  My total thyroidectomy was done in 1995, problems with lymph nodes in between and a paralyzed left vocal chord.  My diagnosis was papillary cystic carcinoma thyroid extracapsular thymic invasion.   

August 2006, almost a year ago.  I had a revision thyroidectomy, left neck dissection and tracheotomy.  Due to complications an innominate artery repair was done and a sternotomy (chest cracked open) was done.    I was in the hospital for 6 weeks.  Other complications happened while in ICU.  It was very eventful to say the least.  Most days it was touch and go but I kept fighting.  So, enough of that.  My husband and toddler who visited me everyday kept me alive.  My faith stayed strong and is still strong to this day.  Now I'm faced with two paralzyed vocal chords.  I sound like a child but am happy to be talking at all.  I ended up with a frozen left shoulder that is being taken care of by a chiropractor.  It is still weak, but at least I am not having those sharp pains anymore. I'm avoiding another surgery.  I think I've been through enough for now.  My body is just a total mess.  It has been a long hard road to recovery.  Staying positive and living everyday to the fullest is the key.  

Thanks for your support.  Sorry but it's our nap time (my 2 1/2 yr. old son and me).  I'd like to keep in touch with you, so keep me posted.  Take Care & God Bless.  Best wishes and good luck for a speedy recovery.

"Choose the finer things that life offers.  Reject what is worthless with a smile."

 

 

Hi Paulette!  I read your initial posting of January 1995.  So you have been dealing with this for 12 years?  One might say oh you have survived that long but quality issues are being overlooked with this type of cancer.  They say oh! if your gonna get cancer that this is the type to get.  It's not like other cancers, that's what I've been told.  Then you read the postings regarding the preparation for treatment and the extensive surgeries to battle this cancer that crops up in the neck region.  Well, only people who haven't been touched by cancer could say that.  I do know success stories, I work with one but this cancer can be challenging as you and so many have proven.  I spoke to my endo by phone and said well if ablation doesn't work that well with my type of cancer than how is it managed.  Oh!  we use ultrasound and surgery.  Well how much surgeries before your life quality is compromised.  You mentioned frozen shoulder.  I had frozen shoulders after radiation for BC, it last about 11 months, almost a year and with physical  therapy I now don't even recognize that I don't have complete range of my left shoulder.  I do pretty much everything right now.  I had a lumpectomy plus with my BC, actually had 2 biopsies and extra tissue removed to obtain clear margins and remove tissue affected by infection.  Didn't leave much and what remained was subjected to radiation which as one doctor says "it's the gift that keeps on giving", meaning the effects are ongoing, (shrinkage).  A year later I persuaded my doctor's to prepare me for reconstructive surgery which I had.  A year later I had to have reconstruction again as the implant was ruptured in doing a core biopsy in the opposite breast which thank God turned out to be benign but had tweaking done and I'm very satisfied with the results.  Other than follow up appt. with my team doctors and an occasional infusion for my bones (due to replacement therapy that depletes bone, Femara) I've been living a normal life.  Nest mammo is in Jan. 08.  Joined a gym last Feb. and worked out for a good 3 months, starting to see the positive effects too but than I guess it wasn't to be because here I am talking to nice people like yourself.  Looks like you managed to have a healtly 2 yr. old, that's is just great.  Congrats to you and your husband.  I have a 31 year old and a 24 year old daughter.  No grandchildren but I do have a granddog which gets a laugh.  We actually will be watching him the end of Sept. when my daughter and her husband go on vacation.  You have been through an ordeal Paulette.  I try to keep things in perspective.  There are so many sad and tragic stories sometimes you don't even know what to say but want to reach out and at least say, I'm sorry and you are not alone.  I'm sorry you have had to go through all this with such a so called benign cancer and pray that God through His graces releases you from any more of this and only bless you with good health to enjoy your family.  Stay in touch, you are an inspiration for many of us.

Leemg:

I am so sorry to hear about your path report.  I meant to post sooner, but I want you to know I have been praying for you.  I remember your earlier posts, and thinking that after BC, this should be kind of simple.

It appears we have children about the same age.  Mine are now 22 and 33.  My daughter was diagnosed with stage 3 BC a little over 2 years ago when she was just 30.  She is doing really well, but frankly, it scares the heck out of me to think that she could, like you, be facing thyroid cancer because of her "cure". 

You will remain in my thoughts and prayers.  Let us know how you are doing.....

David 

Thank you David for your well wishes.  I'm sorry to hear about your daughter.  That is so young to have dealt with BC.  Is there breast cancer in the family??  Many women who develop it that young have an inherited form sometimes connected to the BRAC 1, BRAC 2 mutation.  I'm glad she is doing well and hope she continues to do so.  I'm trying to look into a possible breast and thyroid link.  Spoke to a genetic counselor and apparently there is a syndrome called Cowden Syndrome which has a connection but there are skin problems associated with that which I don't believe I have but have an appointment next week to discuss this further.  What is your history regarding thyroid cancer??  Got a call from my endo today, had blood work Friday, and my calcium levels dropped to 7.0 (I believe normal is 8.2).  Asked me if I was feeling okay.  A sudden drop he explained could cause seizures among other things. I thought I was doing pretty well until I got that phone call and now I'm aware of any twitching etc. in my body.  Also told me I would be having 125 (whatevers) of the RAI.  I go back 8/21.  Thanks again for writing!

Leemg:

The only breast cancer in our family tree was one great-grandmother, which my daughter's oncologist said was too remote to count.  He characterized her cancer as "a bolt of lightning" kind of event.  So too with my thyroid cancer. 

I am just grateful that my daughter discovered her lump.  Mammograms aren't even suggested for women her age, and she had a breast exam shortly before her discovery.  She had to insist on further screening and a biopsy because she was considered so low risk.

I had a CT scan for a swelling on my shoulder near my neck.  That swelling was benign, but the scan showed a thyroid nodule, which turned out to be papillary cancer. 

You just never know.  Please keep us apprised of your progress.  I pray that all will be well with you.

David