Annual Update / Possible Bump in the Road?

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LindaLou53
LindaLou53 Member Posts: 929
edited June 2014 in Stage III Breast Cancer

Well ladies, I am now 13 years out from my first BC dx - stage 2A IDC of right breast and just over 7.5 years out from my second BC dx - stage 3C ILC of the left breast.  I have been blessed with NED all this time and life has been good.  I don't spend as much time on these boards as I used to but do check in from time to time.  I usually give an update here each year after my annual CT scan and visit with my oncologist.  I had my CT of chest/abd/pelvis one week ago and met with my oncologist yesterday.

Labworks are all normal including my Ca27:29 which is 36.  The CT scan found much the same as it does every year, including old granulomatous disease in the lungs and spleen (a result of living in the Midwest all my life with Histoplasmosis), minimal chronic parenchymal changes in the upper lobes post radiation tx, a persistent right adrenal nodule that never changes and some mild fatty infiltration of the liver.  These conditions have all been present for many years and considered benign.

The CT also reports a new finding which at this time is of uncertain significance.  I have a "1.1cm Pretracheal lymph node which is slightly larger than the previous study (2012) at which time it measured 8mm".  I learned from my oncologist yesterday that radiologists rarely report lymph nodes specifically until they reach the 1.0cm size.  At that time their radar goes up and they start paying more attention to the surrounding area of the suspect node.  The Pretracheal nodes are at the front side of the trachea, below the sternum and within the Superior Mediastinum which is the uppermost part of the chest cavity.  Within this area is the trachea, esophagus, major blood vessels such as the Aorta, Superior Vena Cava, Pulmonary Artery, Laryngeal nerves etc.. It is a small compartment in the upper chest and somewhat difficult to navigate for nodal biopsy.

Because the current 1.1cm node is too small to be reliably picked up by PET scan and there are no other indications of enlarged nodes anywhere else on CT, along with the lack of symptoms and normal labs, we have decided to repeat the Chest CT in 6 months. It took 12 months for the node to gain 3mm in size. If in 6 months the node has grown in size to at least 1.5cm, then a PET scan will be done.  If there is increased uptake in that nodal area, I will most likely be scheduled for a Mediastinoscopy with biopsy either by a pulmonologist or thoracic surgeon. It is not a procedure I would wish to have but is supposedly the "gold standard" for gaining biopsy samples of mediastinal nodes.

Of course, I am hoping this slightly enlarged node is due to some other transient infection or immune response and will be no larger or maybe even smaller in 6 months.  I did have an active eye infection with orbital swelling at the time of the CT scan and my oncologist suggested that could be reason enough for a small enlargement. (whether she said that to make me feel better or because it is a possible cause I don't really know). 

Either way, barring any new symptoms, I am willing to wait the 6 months if it assures a more accurate diagnosis of what is actually going on.  Given my advanced local nodal involvement at the time of my bilateral mastectomy in 2005, the concern is breast cancer mets of course.  I am not prepared to go there just yet, but I have no illusions as to my recurrence risk.

So this may not be exactly my usual positive and “still NED” annual update, but I am not yet conceding otherwise.  Time will tell, but for now nothing has changed other than the acute awareness that even when life is good, cancer has a way of pulling us back to that scary place.  Whether it turns out to be just a scare or a new path my life is about to take, all I can do is make the most of this moment, today….and tomorrow will take care of itself.  Thanks for listening.  If anyone has had a similar experience with mediastinal nodes I would be interested in hearing your story.   Smile

Comments

  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited July 2013

    Linda, I'm so sorry that you have to go through this, and that it might be at least another six months until you're given better direction. You know that they are paying attention to this spot because of your history, so we will all hope and pray that in six months they no longer see an enlargement. Given the area that you are talking about and the difficulty of doing a biopsy, if you do have to go that route, make sure whoever does it is an expert. I'll be praying for a great outcome.

    Hugs

    Bobbie

  • Gitane
    Gitane Member Posts: 1,885
    edited July 2013

    While I have no similar experience to share, Linda, I wanted to just say that I wish you didn't have this "finding" to think about.  3 mm is so little.  I really hate this!  It's that "accute awareness" you mentioned that really is the pits.  On the positive side, everything looks normal CT and bloodwork wise.  I'm glad you are not "conceding" to anything other than NED.  I can read in your post that you are realistic in two ways.  You know the risks and you live every day.  Hugs to you, Linda.  We'll be waiting, too.

  • bevin
    bevin Member Posts: 1,902
    edited July 2013

    Dear Linda, I'm so sorry about your recent scan and am praying the lymph node reduces in size at your next scan and that your NED status remains.

    Praying you have strength as you go through this.

    Bevin

  • hopefour
    hopefour Member Posts: 459
    edited July 2013

    Lindalou53...You have so much to celebrate with your 13 years and 7.5 years...thank you for always coming back and cheering us on!! Yes, there may be a bump in the road ahead, but if there is you have all of us to cheer you on than. I'll for sure be watching for an up-date in 6 mos and will be praying all will be back to normal!! If it is something... you caught it so early you'll be back to NED!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    LindaLou- I'm praying the lymph node is absolutely benign, and I know it will be.  They will watch it.  I agree with what you said about no matter how good life is, cancer has a way of pulling us back to that scary place.  I TOTALLY AGREE!!!  I think that's what others that haven't taken this journey don't understand.... i.e., that fear & doubt only need a tiny window space to break into our minds, even though we may feel good.  Keep lookin up -- Shelly

  • MaxineO
    MaxineO Member Posts: 555
    edited July 2013

    Thanks for the update. I, too, will be praying that that pesky lymph node is just a whole lot of nothing!  I love that you beat BC twice. Truly a warrior woman. And you're right, tomorrow will take care of itself, so try as best you can to put it out of your mind.  Take care.

  • jennyboog
    jennyboog Member Posts: 1,322
    edited July 2013

    Congratulations, thanks for posting and visiting us here!  I'm sorry to hear about the LN, I pray it's nothing, please let us know. 

  • lkc
    lkc Member Posts: 1,203
    edited July 2013

    Hi Linda Lou,

    Here's hopindg that the tiny increase is due to an inflammatory process, and or related to the infection. My gut tells me if it was a baddie additional findings would of be found.

    Anyway, My dear try not to worry. keep us posted when you get the good news.

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited July 2013

    Well I think you are still doing very, very well!  And it took a really long time for that node to increase ever soo slightly. I think you are being very practical in waiting the six months to look at it again and I hope and feel very strongly that it will have resoved itself by then. I have always been inspired and uplifted by your story!

  • Bugs
    Bugs Member Posts: 1,719
    edited July 2013

    hi Linda, I gotta believe that this node is due to inflammation of some sort.  Hugs to you and nice to "see" you!

  • LindaLou53
    LindaLou53 Member Posts: 929
    edited September 2013

    Thank you everyone for the encouragement and supportive posts!

    Another Update:  I am still scheduled for a repeat CT in January to re-check that 1.1cm Pre-tracheal node found this past July.  During my annual physical with my PMD however on August 19, he thought he felt some "small palpable nodes" in my left supraclavicular fossa.  My oncologist and surgeon felt they would like to know sooner than later if there was something actively going on, so wanted me to get a CT of my neck (which I have never had before).  I just got the CT of my neck a week ago today and the good news is that they did not find ANY worrisome nodes or signs of active cancer! YEAH!

    The other news though, is that a long standing aneurysm of my left external jugular vein appears to be getting bigger and the radiologist wants me to see my vascular surgeon for a re-evaluation.  I first became aware of the aneursym in 1998 when it was about the size of a marble.  It was officially diagnosed during an ultrasound in 2006 while I was in cancer treatments.  Because it is a vein and not an artery, the doctor's were not worried about surgically repairing it unless it got larger or started to present painful symptoms. 

    I have it ultrasounded every other year, but the CT scan was able to reveal more detail which the radiologist believes is worrisome.  The bump in my neck is about the size of a robin egg now, so I will be seeing the vascular surgeon next Monday.  This is unrelated to the cancer, but if the doctor determines it needs to be treated, it will involve a simple ligation and tying off of the vein.  It is very superficial and supposedly an easy procedure to be done as an outpatient.  SO...I will know more after next Monday.  I will definitely discuss the pros and cons of surgical repair with him.  I have to weigh the risks of a venous rupture with risks of post-operative bleeds or clots, plus my existing lymphedema and risk for infection.  Sometimes, we just have to take the path of least negative outcome....once I know what that is!  Smile

  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited September 2013

    Linda,

    I am so thrilled for you to hear about the negative on the cancer! The vein thing sounds like something simple that they can take care of without causing you more problems. I have a good feeling it will turn out ok for you!

    Peace

    Bobbie

  • NancyD
    NancyD Member Posts: 3,562
    edited September 2013

    Linda, great news about the possible cancer...not so great about the aneurysm. I hope whatever course of treatment you opt for brings very positive results.

  • Momine
    Momine Member Posts: 7,859
    edited September 2013

    Linda, sorry for the annoyances, but so happy it isn't anything worse.

  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited September 2013

    Linda,

    CONGRATS on 13 years out AND NED!!!  I love it!  Now, the aneurysm---although I don't know much about that, it's good to know they saw it early and are closely monitoring it!  Hopefully you'll have some good hard data next week.  Keep us posted.

    Love,

    Sharon

  • Bugs
    Bugs Member Posts: 1,719
    edited September 2013

    Linda, so glad you got good CT results!  Keep us posted on the aneurysm and I'm glad they are keeping a close eye on it.  Hugs!

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