As my cancer journey unfolds.....

jazzy1
jazzy1 Member Posts: 1,379
Few weeks back a lymph node was found  on my neck, and gave it a few days to see if it would change...got a bit smaller, but still uncomfortable to the touch.  Called GYN oncologist whom suggested I see my PCP, whom didn't think it was thyroid.  From there I was directed to another specialist, ENT (ear, nose & throat) doc whom had concern.  He told me this was a supraclavicular lymph node and part of the path with many cancers.  After reviewing my past CT scans of chest to pelvic area and one to the lungs, noticed the past nodes on lungs, suggested we proceed with a PET scan.

 

Met with ENT yesterday for results.  With a PET everything is rated on metastases according to type of rating under SUV numbering system.  Want anything under SUV 2.5 or so and the supraclavicular lymph node was shown at CT in January (didn't show up on ratings as not truly part of the area checking, but was on side of scan) grew in size and the SUV 8.2...alarms here!!!  Doc says yes cancer....argh~  

 

Plus showed all the lung nodes from July CT scan that I was alarmed before, aren't any alarms now....whew!  As a few have said, many times simply "junk" in the lungs which will be monitored. Do find some spots with higher SUV for 1 on chest between lungs and few in abdominal cavity.  All of these are most likely the same cancer as in the supraclavicular node in neck.  Apparently fluids travel thru lympj nodes from abdominal area and travels to the supraclavicular and goes back down thru the body.  In my case sat there for a bit and got larger and created more cancer cells.  He tells me this neck node is the size of silver dollar...yikes!  

 

Since he isn't expert with my female GYN cancer, wanted to confer with my oncologist Dr. Easley. Both spoke while I was waiting in the exam room, and GYN ONCOL recommended to do a biopsy of the supraclavicular node to see what's going on and type of cancer cells.  All of these spots should be the same cancer and most likely treated with chemo.  They'll send the cancer cell biopsy to a company which tests it, called an ASSAY, and recommends type of cancer and type of chemo to administer.    

 

 

Think I covered it all, but at this juncture they want to confirm type of cancer and then know how to treat.  I can only assume chemo is one way of treating as even Dr. mentioned there could be some "low flyers with cancer" undetected to the PET/CT s cans.  Get them all before they begin to get larger.  Also, all of these spots are LYMPH NODES....nothing on ORGANS!!  This is good news as we all know of a few others whom had spots on lungs, kidneys, brain....how long did they survive!!

 

I've had a great run with 4 yrs of NED, and now picking myself up and getting ready to fight.  I'll make some changes such as using a naturopathic oncologist, as apparently I'm not good at keeping my terrain strong...let that go to a specialist.  

 

What I can relay to anyone else on these boards, don't get in a comfortable place thinking cancer can't come back, as it can.  Do know any unknowns on the body such as enlarged lymph nodes, definitely must be checked out.  Wouldn't you rather get to doc and find out that it's nothing, vs. filling yourself with worry, or if cancer, catch it at the beginning???  I did listen to my body and made the call thru the doc maze until I found the answer.  Not what I wanted to hear, but at least we know what we're dealing with today.

 

I'm a fighter and have no plans of going anywhere off this planet.  Just another part of my journey and luckily this is treatable and do-able.

 

Life goes on and so will I....

 

Hugs to all the warriors...don't ever give up~

Jan 

 

 
«1

Comments

  • fuzzytrouble
    fuzzytrouble Member Posts: 212
    Hi Jazzy, I agree with you on

    Hi Jazzy, I agree with you on not getting comfortable, I am sending you hugs from Oregon and we will keep fighting as long as we can. 

  • laura25
    laura25 Member Posts: 178
    Jan xoxo

    Hi Jan,

    I just read your post and I'm so so sorry.  Going for the biopsy will tell you for sure... I will hold out and not say cancer until the report comes back that it is.  You are a fighter,  you are determined, you are a warrior.  We all have your back on this board and support you anyway you need. 

    With all my love and support,

    Laura 

  • Ro10
    Ro10 Member Posts: 1,561
    Jan I am so sorry to read your news

    When my lymph nodes enlarge usually one of them is a supraclavicular node.  Mine have never gotten as big as yours is.  But they have always responded to chemo.  I have never had it biopsied either.  I hope you get a plan in place because I know you will fight this the best you can.  I too am always thankful The cancer has stayed in the lymph nodes.

    In Ocober I am coming up on the five year anniversary of hearing that terrifying "C" word.  I too plan to continue to fight this beast, and continue to enjoy each day. 

    Jan, hang in there and take it a day at a time.  You remain in my thoughts and prayers.  In peace and caring.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 2,999 Member
    Warrior Jan!

    Jan, I am so sorry.  You have been so helpful to me and I hate to hear that you have to go through more treatment. 

    You are right though, as Winston Churchill said: Never, ever, ever, ever, ever, ever give up!

    Keep us posted and know that you are in my prayers, as I know of so many others.

  • ConnieSW
    ConnieSW Member Posts: 1,604 Member

    Warrior Jan!

    Jan, I am so sorry.  You have been so helpful to me and I hate to hear that you have to go through more treatment. 

    You are right though, as Winston Churchill said: Never, ever, ever, ever, ever, ever give up!

    Keep us posted and know that you are in my prayers, as I know of so many others.

    D*** cancer

    You hadn't been posting as you usually do so you have been in my thoughts.  I chose to hope you were off on vacation.  I'm so sorry that wasn't the case.  Your fighting spirit and courage will stand you in good stead.  I hope the plan of treatment comes together quickly so you can get on with getting into remission.  I send you my love.

    Connie

  • cheerful
    cheerful Member Posts: 261 Member

    Hi Jan:

     

      I am so sorry to hear of your latest post regarding the lymph node and that you will need chemo.  It's good that you kept on top of this although like you said it was not what you wanted to hear.  I am glad to hear that it is treatable and doable.  

      As far as cancer goes, none of us can ever let our guards down as it is always in the back of one's mind.  All any of us can do is hope for the best.

      I will keep you in my thoughts and prayers, Jan and wishing you all the best.  Please keep us posted.

    Hugs,

    Cheerful

    a/k/a Jane

     

      

  • Kathy G.
    Kathy G. Member Posts: 238 Member
    Hi Jan!
    I was really

    Hi Jan!

    I was really flabbergasted to read your post! And SO sorry you have to go through the waiting, worrying, testing, etc. That is always the worst part.

    I am prayerful that whatever this turns out to be that minimal treatment is necessary to get you back on course.

    I have always admired your committment to your recovery, these boards and helping others, and the vast knowledge that you have shared.

    Please don't be too hard on yourself...your comment on your terrain kinda shocked me given how much you know about the link between good nutrition and cancer and your history of taking care of yourself this way and with exercise.

    While I believe diet, exercise and lifestyle plays a big part in if we get seriously ill and how seriously ill we get I am really leaning towards thinking genetics and enviromental factors beyond our control play a huge part in disease. So many ladies on here made herculean changes to their lifestyles to avoid reoccurences, and still they happen.

    My thoughts and prayers go out to you.

    Please keep us posted.

    Kathy

  • Double Whammy
    Double Whammy Member Posts: 2,832
    Kathy G. said:

    Hi Jan!
    I was really

    Hi Jan!

    I was really flabbergasted to read your post! And SO sorry you have to go through the waiting, worrying, testing, etc. That is always the worst part.

    I am prayerful that whatever this turns out to be that minimal treatment is necessary to get you back on course.

    I have always admired your committment to your recovery, these boards and helping others, and the vast knowledge that you have shared.

    Please don't be too hard on yourself...your comment on your terrain kinda shocked me given how much you know about the link between good nutrition and cancer and your history of taking care of yourself this way and with exercise.

    While I believe diet, exercise and lifestyle plays a big part in if we get seriously ill and how seriously ill we get I am really leaning towards thinking genetics and enviromental factors beyond our control play a huge part in disease. So many ladies on here made herculean changes to their lifestyles to avoid reoccurences, and still they happen.

    My thoughts and prayers go out to you.

    Please keep us posted.

    Kathy

    Wow

    I'm so sorry that you're going to have to battle the beast again, but you will be armed with good information and on the right course.  And, because it's been 4 years, you're strong enough to do it!  I just hate that this is happening.

    Suzanne

  • debrajo
    debrajo Member Posts: 1,095
    Jan

    As we say in Texas,|" this is not your first rodeo'. You have a lot of the fear factor taken out of the equasion and you certainly know howw to fight!  You know we all look up to you for strenght so I KNOW you are not going anywhere! I personaly will NOT allow it.  Just look at your 4 years of NED as a practice run...this time you are going for the 100 % cure!  I am here,just give me a holler.  Best, Debra(I gotta have someone to gripe to!) LOL

  • Sisters three
    Sisters three Member Posts: 165 Member
    debrajo said:

    Jan

    As we say in Texas,|" this is not your first rodeo'. You have a lot of the fear factor taken out of the equasion and you certainly know howw to fight!  You know we all look up to you for strenght so I KNOW you are not going anywhere! I personaly will NOT allow it.  Just look at your 4 years of NED as a practice run...this time you are going for the 100 % cure!  I am here,just give me a holler.  Best, Debra(I gotta have someone to gripe to!) LOL

    Jan, thank you for another lesson

     

    I continue to learn so much from your postings. Thank you for explaining the PET scan. I'm sorry your back into this. I'm sure that your doctor will beat it back again. I love hearing about the naturopath 

    coming into play too. Two teams working is much better than one. Hang in there and keep us posted on what both teams are going to do to get you back to NED. Your so strong and active I believe the cancer doesn't have a chance against you! 

     

     

    I also have several lung nodules that are being watched and at first was worried sick over them. Doc decided to wait six months for a recheck due to the junk possibility. I wondered how I could sit back just worrying. Then the husband had a heart attack and a 15 hour open heart surgery that nearly killed him. He was in ICU for three weeks, after 34 total days in the hospital he got home last week. It will be another several weeks of recovery before he is back on his feet. During this time the refrigerator went out as did the hot water heater. Yesterday I had to pull the toilet up and replace the wax seal under it. It's funny I prayed to have a diversion from worry, ummm God not this kind!!!! How about winning the lottery or finding buried gold when I replaced the tree the storm brought down just before the heart attack!

    Let this be a lesson to us all, DON'T PRAY FOR DIVERSIONS! 

    Now that we owe our souls to the hospital, there is no way cancer can take me till I pay off this bill.

    I think I just bought myself 10 years!!!!

    Lisa

     

  • I believe
    I believe Member Posts: 38

    Jan, thank you for another lesson

     

    I continue to learn so much from your postings. Thank you for explaining the PET scan. I'm sorry your back into this. I'm sure that your doctor will beat it back again. I love hearing about the naturopath 

    coming into play too. Two teams working is much better than one. Hang in there and keep us posted on what both teams are going to do to get you back to NED. Your so strong and active I believe the cancer doesn't have a chance against you! 

     

     

    I also have several lung nodules that are being watched and at first was worried sick over them. Doc decided to wait six months for a recheck due to the junk possibility. I wondered how I could sit back just worrying. Then the husband had a heart attack and a 15 hour open heart surgery that nearly killed him. He was in ICU for three weeks, after 34 total days in the hospital he got home last week. It will be another several weeks of recovery before he is back on his feet. During this time the refrigerator went out as did the hot water heater. Yesterday I had to pull the toilet up and replace the wax seal under it. It's funny I prayed to have a diversion from worry, ummm God not this kind!!!! How about winning the lottery or finding buried gold when I replaced the tree the storm brought down just before the heart attack!

    Let this be a lesson to us all, DON'T PRAY FOR DIVERSIONS! 

    Now that we owe our souls to the hospital, there is no way cancer can take me till I pay off this bill.

    I think I just bought myself 10 years!!!!

    Lisa

     

    Its not cancer yet

    Jan,

    Let us not jump into conclusions until you recieve the biopsy results. You recall the lesion of 4.5 cm found in CT scan on my mom's liver and then  it turned out to be nothing!

    What we can do from now till you recieve the biopsy results is pray and pray and pray....

    You are a success stroy for all of us and a great fighter

    Keeping you in my prayers

     

  • Fayard
    Fayard Member Posts: 438
    Jan,
    I am just reading your

    Jan,

    I am just reading your post. I know you are goingt to win this battle. Please keep us poted. As always, you are in my prayers.

    Your friend, Luisa

  • sunflash
    sunflash Member Posts: 197
    Fayard said:

    Jan,
    I am just reading your

    Jan,

    I am just reading your post. I know you are goingt to win this battle. Please keep us poted. As always, you are in my prayers.

    Your friend, Luisa

    Dear Jan,
    I'm so sorry to

    Dear Jan,

    I'm so sorry to hear your news and that you're facing more chemo. But we all know how much of a fighter you are, and I'm sure you're going to kick this beast back to the curb where it belongs.

    Thank God it's confined to the nodes and not on any organs. You've caught it early and have every reason to believe this can be conquered. We're here for you every step of the way.

    Here's to fighting......beating....and a long, long dance again with our coveted partner, NED.

    Hugs!

  • jazzy1
    jazzy1 Member Posts: 1,379
    sunflash said:

    Dear Jan,
    I'm so sorry to

    Dear Jan,

    I'm so sorry to hear your news and that you're facing more chemo. But we all know how much of a fighter you are, and I'm sure you're going to kick this beast back to the curb where it belongs.

    Thank God it's confined to the nodes and not on any organs. You've caught it early and have every reason to believe this can be conquered. We're here for you every step of the way.

    Here's to fighting......beating....and a long, long dance again with our coveted partner, NED.

    Hugs!

    Hey There Warriors~~

    I do feel the love and prayers...coming in very strong today!  Definitely thought I had this little devil beat, but must say I'm doing okay.  ENT mentioned at first appt prior to PET, what he thought it was, I started the "oh no, not me now" thinking.  Felt it was a week from hell and then the PET, 2 days later the results...and here I am today.  I've been raised by 2 very strong-willed and determined parents, and guessing that upbringing has brought me lots of tools to fight.  

    Always been a "mind over matter" thinker and today I'm really into the mind working and pushing me into the good enery and positive vibes.  If anyone has read or watched the book/CD called "The Secret", grab a copy and view/read...excellent!!  Speaks about the subject of LAW OF ATTRACTION.  We have to keep our minds centered in a positive light, thinking of the outcome we want, not the negatives.  We attract what we think.....so I'm visualizing my good health back after the treatments.  Bingo!!!

    The crazy part of this supraclavicular lymph node, it was on the side of the CT scan (chest to pelvic areas) in January '13.  Guessing the radiologist didn't see or wasn't part of the area he was to check and didn't write up...so off we went to today and it has doubled in size.  Wonder what would have happened if caught in January?  Can't help but wonder, but we all know water under the bridge and on with life.

    Cancer is not a sentence, it's a word!!!

    Hugs to all~~Kiss

    Jan

     

     

    .

     

     

     

  • txtrisha55
    txtrisha55 Member Posts: 693
    sorry to hear this news a lot.

    Keep fighting and keep your spirits up.  As you said never give up.  It makes me cry hearing your news.  Praying for you and your family along with all the other warriors here.  Keep us in  the loop as you learn more and know that we are here for you.

    trish

  • Shell bug
    Shell bug Member Posts: 76
    I am so sorry! I have been so

    I am so sorry! I have been so inspired by your positive attitude since I joined the board in 2011. You always have such a great way to look at things, and I can tell that hasn't changed even with this setback. I am glad that you have had four years to recover and I know you will be successful in this fight.

    Sending prayers,

    Rachelle

     

  • paris11
    paris11 Member Posts: 159
    Simply Wonderful

    Jan,

    You are an inspiration.  My positive thoughts are with you.  I start doxil next week for my third recurrence.  I gain courage from your energy.

    Thank you.

    Connie

  • HellieC
    HellieC Member Posts: 524
    Sorry to hear this

    Sorry to hear this, Jan.  Four years is a long time - I thought you had this beast beat for good.  But they do say that the longer the time between original treatment and recurrence, the better in terms of response to treatment. 

    So, it's back in the ring, for you.  Head up, armour on - you will knock this back again.  The warriorettes on this board are all fighting with you. 

    Hope you get a treatment plan in place really soon.

    Love and positive vibes winging their way to you from the UK.
    Helen

  • Double Whammy
    Double Whammy Member Posts: 2,832
    HellieC said:

    Sorry to hear this

    Sorry to hear this, Jan.  Four years is a long time - I thought you had this beast beat for good.  But they do say that the longer the time between original treatment and recurrence, the better in terms of response to treatment. 

    So, it's back in the ring, for you.  Head up, armour on - you will knock this back again.  The warriorettes on this board are all fighting with you. 

    Hope you get a treatment plan in place really soon.

    Love and positive vibes winging their way to you from the UK.
    Helen

    Moving forward

    Good to read and feel your attitude, Jan.  We will use that to help you move forward.  I don't see when you will have biopsy and results.  When is all of that happening? 

    Sending lots of good mojo nad more positive toughts your way.

    Suzanne

  • jazzy1
    jazzy1 Member Posts: 1,379

    Moving forward

    Good to read and feel your attitude, Jan.  We will use that to help you move forward.  I don't see when you will have biopsy and results.  When is all of that happening? 

    Sending lots of good mojo nad more positive toughts your way.

    Suzanne

    Suzanne

    Yes attitude has so much to do with getting us to the good part of the journey!!!  Mind over body attitude is always my philosophy.

    Had pre-op testing yesterday...not bad but now heart rate is up and so is blood pressure.  Since TSH for thyroid was higher might be some of side affects if thyroid not functioning at 100%....gee!!  Next Monday Sept 9th is the biopsy at out-patient side of hospital.  Not a procedure done at doc office as this node is close to nerves and jugular...why would any of this be easy...argh~  These results go to the facility in Cali who does the assay (is that how it's spelled) to test for proper chemo drug to use plus oncologist wants to know type of cells in this node.  

    I've got happy thoughts to know this is just another side step in my journey.  God wants to make me work a bit more for the  life time NED.....I do see it~

    Thanks for everyones kind thoughts...

    Jan