New stage 3 hubby

Options
eric95us
eric95us Member Posts: 2,845

I recently found this place.

My wife, age 52,  was diagnosed with IDC 13 Feb 2012.  The PET/CT scan showed only left breast and left axilla lymph node involvement.  She had a double mastectomy on 07 March with immediate reconstruction and all the surgical margins are clear for 10mm.

Her right breast was clear and they were pretty certain that would be the case, but she had decided to "just get rid of it, just in case".

Her left breast had two tumors, one 2cm and one 0.7cm.  8 of 12 lymph nodes removed from her left side were "positive" for cancer.  There were 0.3mm extensions from the nodes into the surrounding tissue the largest metastatic deposit in any of the nodes was 1.8cm.

"It" is ER+ (73%), PR+ (91%), Ki-67 97% and HER2 CISH is nonamplified..I'm assuming tha means HER2-.  Pathologic staging is mpT1c pN2a pMX.   

 I haven't quite figured out the Nottingham score. Each of the three subscores is 3, yet the overall score is listed as 3.

We meet with the medical oncologist in 2 weeks and when the chemo is done, the radiation oncologis will be next.

Not helping me cope are the 28 year old "branded into my brain" memories of my fiancee dying of cancer just before her 22nd birthday.  

So for now, I'm scared S***less, and trying (probably not being successful) to hide it at least a little bit so our 14 year old daughter doesn't get more upset than she is already...and doing all the things for my wife that I can do.

Our 23rd anniversary was 04 March.....what a way to celebrate.....

«1

Comments

  • bak94
    bak94 Member Posts: 1,846
    edited March 2012

    Welcome, but sorry you have to be here. Sounds like you have been through a lot. I am sure you will find great support here.

  • silentbell
    silentbell Member Posts: 266
    edited March 2012

    Eric, I'm glad you found this place.  You will find great strength in the ladies who post here.  This stuff is hard.  Hard on your wife and you and your daughter.  Hang in there.

    My last post was an apology for an ignorant post before that.  A sensitive topic and my response showed me I am sooo not ready for prime time reality.  I don't know how anyone can cope with with all we/they are going through.  All my best to you and your family.  Good luck.

  • many
    many Member Posts: 254
    edited March 2012

    I think it's grade -3 (9/9) but still there are women leaving out 10 /15 years out with there treatment , even u will overcome this

  • eric95us
    eric95us Member Posts: 2,845
    edited March 2012

    Thanks you. 

    She's been up and moving around quite a bit.  The other day she walked about two miles...basically until her drains started bugging her..but she admitted that might have been a bit much.

    We meet the radiation oncologist tomorrow.  Since my wife is a a nuclear engineer by training I'm sure she and the doctor will be talking shop....

    The medical oncologist, Dr Ondreyco, uses her maiden name in her practice.  Her first and married last name is the same as my wife.  Talking with the schedulers at Dr Ondreyco's office...it reminded me of the "who's on first" comedy routine..

    It's time to strip her drains .....another "romantic encounter" with her double Ds (Damn Drains).   It sounds bad/kinky/corney, but it gets her to laughing....

  • lago
    lago Member Posts: 17,186
    edited March 2012
    eric95us I know several stage III women her in Illinois that are doing rather well (still NED!). Don't assume the worst. Her glass right now is substantially more than half full if she does treatment.
  • eric95us
    eric95us Member Posts: 2,845
    edited March 2012

    While scared, I am pretty upbeat...then a tiny seed of doubt creeps in and I get to thinking about 28 years ago..whch gets me *really* scared and then I have to push the doubt out.

    I think I did do some good today..  Sharon was griping about the drains...I took a *very* close look at them and decided that the weight of the tubing was pulling on the suture holding it in place.. So I got some paper tape and taped the drain tube about 2 inches back from the suture so the weight isn't pulling on things so much.  So far it seems to be working..she's sleeping right now.

     

  • lago
    lago Member Posts: 17,186
    edited March 2012

    How sweet.

    Eric it does get better. The beginning is the worst. All the unknowns are so scary. 

    Hope she gets her drains out soon. I was one of the lucky ones that only had them for a week.

  • Ossa
    Ossa Member Posts: 919
    edited March 2012

    Eric..  I used safety pins on my drain.. Pinned it to my shirt. That was there was no pulling

    Good luck with the rad onc tomorrow

  • Cindyl
    Cindyl Member Posts: 1,194
    edited March 2012

    Eric.  It's a tough road, I wouldn't deny that for a minute.  But please don't let the past weigh too heavily.  As a 12 year old I watched my Aunt lose her battle with breast cancer in 1972.  There was so little they could do, and what they did was so very brutal.  We have many, many more, better choices for treatment, and many ways to make the treatment more bearable.

    I wish your family all the best.

  • eric95us
    eric95us Member Posts: 2,845
    edited March 2012

    Ossa, did you pin the drain tube or the container at the end (the "bulbs") to your shirt?  

  • lago
    lago Member Posts: 17,186
    edited March 2012
    Eric I just pinned the part that loops the cap to the bulb to my bra with safty pins then wore my shirt over that. My issue was there was so much tubing. I'm guess I'm kinda small even though I'm 5'6"
  • eric95us
    eric95us Member Posts: 2,845
    edited March 2012

    Sharon uses little pockets that hang down from the front of the surigical bra.  I'm hoping they are for the "bulbs"..these pockets would be horribly "in the wrong place" for inserts. :-) 

    I did have to move up to a more sticky tape as the paper tape wasn't holding that well.  But now that the tubing isn't pulling on the stich, she says it's "not perfect, but bearable...."  Perfect would be not having BC at all, but that's not realistic.

    To Cindyl/  It's hard to not think about 28 years ago...You are right, the treatment was much more brutal and in that case, some of the doctors weren't that understanding....Everyone I've talked to says the chemo is much less harsh and the doctors are much more understanding.

     Silentbell, I read what you called your ignorant post..... Don't worry about it.

    About two weeks before Mickey (my fiancee) died, I came within half a dozen security guards of punching out a doctor who told me he stopped her morphine because "You've got to understand.  They investigate doctors who presecribe too many narcotics..it's a hassle."  

    It's something I'm still proud of. :-)

  • Ossa
    Ossa Member Posts: 919
    edited March 2012

    Eric..

    I pinned the ball to my shirt or pants. When I went out I pinned it to my bra, that way no one could see it (Baggy shirt over) I had my drain in three weeks =( It was still draining lots at that time, but P said it had been in long enough.. Hope your wife gets her out soon

  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited March 2012

    Eric....I can't help but wonder if there is so much purpose to your life that it feels painful.  You are very educated in all the right ways with your wife and daughter.  You can stand tall knowing the man that you are and all the ways you are there - for now the second love - to help, support, understand etc.  Treatment now is much different than it was then...as women we are much different than we were then! 

    Your experience should not be diluted or hidden.  It hurts...and it teaches.  I'm reading a book right now that I think everyone should read and I would like to suggest it to you and your wife.

    Man's Search for Meaning by Victor Frankl.  It's a great way to understand our own mind and what we are actually in control of.  Bonus:  if you enjoy history, you'll like this read for more than one reason :)

    BTW...I'm pretty proud of you too!!!!  I've been in similar situations and have said, "You can take your education and shove it up you...."  you know the rest ...

  • eric95us
    eric95us Member Posts: 2,845
    edited March 2012

    We just got back from the radiation oncologist.  We got the usual thick packet of information and the  doctor, a very soft spoken lady, gave her a very complete physical exam, the most complete medical history "exam" and spent probably another 90 minutes going over everything with us.

    Her radiotherapy will last about 6 weeks and won't start until after the chemo is done.  If what I heard at the breast surgeon's office is correct, the chemo will be done around Thanksgiving, so it looks things will slow down sometime soon after the beginning of 2013.

    One of the most interesting things I noticed about this visit was that when the doctor realized Sharon was a nuclear engineer with strong knowledge of biology..the talk became much more scientific.  I'm also an engineer, so I was able to follow along, but it took some work on my part to "keep up".

  • eric95us
    eric95us Member Posts: 2,845
    edited March 2012

    Im on my smartphone so typing is a chore.

    port placed and cardiac tests on Apr 3, chemo class Apr 5 and chemo starts Apr 9.

    My wife holds a commercial driver license, so they are chevking out potential side effects and issues with drug testing before clearing her to drive "the big vehicles".



    On the 5th we will know what she's getting and how often.

  • lago
    lago Member Posts: 17,186
    edited March 2012

    Hang in there eric.

  • Alirena
    Alirena Member Posts: 82
    edited March 2012

    Eric,

    I think you are going to find that you and your wife will take this cancer experience on just like you would one of your engineering jobs...step by step, paying close attention to detail, taking meticulous notes along the way, etc.  When I had drains I started with the pins but quickly found that an ace bandage through the drain loops and tied around my waist worked much better.  Thanks for sharing your experience. 

  • eric95us
    eric95us Member Posts: 2,845
    edited March 2012

    How could I forget. Her drains were pulled yesterday. She is sooooooo happy...and so am I. 3 weeks with the &$#%%$&$&$&$$#@#()+&;'"& drains!

  • CLC
    CLC Member Posts: 1,531
    edited March 2012

    Eric...I have been following your posts...and I want to smile for you and your wife...removal of the drains are perhaps a small thing...but yet, such a big thing...returning to normalcy...:)

    I hope you both are doing as well as possible...

    Claire

  • Alirena
    Alirena Member Posts: 82
    edited March 2012

    Love is emptying a loved one's drains for her even though she is most likely able to do it for herself.  I had drains again with my exchange surgery but only for a week.  Has your wife's plastic surgeon told her whether or not he/she will use them during her exchange surgery?  Not all plastic surgeons use them. 

  • iaddinall
    iaddinall Member Posts: 2
    edited April 2012
    Sounds like we are in a similar place Eric. My lady just had final tube removed. We just got HR results..strong positive on both. Nodes were 6 out of 22...so i say 16 clear. All we can do is be supportive and understanding...I try to find the light through all the dark moments. We will begin chemo soon....I view the HR results as positive for us and treatment. My lady knows I am here no matter what....I know I am here no matter what.....This is not a journey we chose to be on but we are here......my Lady can vent...displace.....it just doesnt matter...I am staying with her on this journey and we will overcome......
  • eric95us
    eric95us Member Posts: 2,845
    edited April 2012

    Iaddinal,  We are about the same place in the journey.  Has she started chemo yet? 

    Sharon started chemo on the 9th. It's four AC on a dose dense schedule followed by four Taxol on the same schedule (all done in 16 weeks).  The first one gave her what she described as a first class hangover with super hot flashes, followed by a medium grade flu for the next 4 or 5 days.  She's been in pretty good spirits so far.  If she does decide to vent some fire in my direction, I'm ready to don asbestos underwear with the painted on target....   :-)

    The "hangover" ended late Sunday and today she's feeling great.  She's going to drive the school bus this afternoon just so she can feel some

    She has a swollen spot under her left ear (same side as the breast cancer) and they did a head CT scan.  The oncologist doesn't think it's cancer, but has referred her to another doctor for a more detailed check.

    And, finally,  I heard an interesting song yesterday.  "The Show" by Lenka.  It can be heard on YouTube.  If the phrase 'the show' is a metaphor for life, the song is an interesting fit....and I think we all should be entitled to some of our money back...not that it will happen

    Eric 

  • momof3boys
    momof3boys Member Posts: 896
    edited April 2012

    Eric- just stumbled across your last post... I'm out of chemo (last tx was march 2nd and I'm halfway done with radiation). I have a "lump" on my neck just below my left ear, also. Geesh... Mentioned it last Thursday at my rad tx and thought the world stopped. Was seen by 4 doctors on Thursday and Friday, had an ultrasound and 3 CT scans w contract (neck, chest, abdomen). I was 2 minutes away from a fine needle biopsy, actually on the table, when the Dr asked me if anyone had looked in my throat... Turns out, I had strep throat. I'm on penicillin right now, 500 mg 4x a day. I had no symptoms of strep, except that huge lump...apparently, I'm an "adult carrier". Hope your wife's lump goes away...

  • eric95us
    eric95us Member Posts: 2,845
    edited April 2012

    She had the head CT with contrast.



    The oncologist's PA was pretty calm about the whole thing and I just found out the new doc is an ENT type so hopefully they won't forget the easier stuff.



    Eric







  • eric95us
    eric95us Member Posts: 2,845
    edited April 2012

    After much poking, probing and imaging, the current opinion is that the lump under her ear is not a problem.  And for some additional good news, our 8th grade daughter has been accepted into the IB program at the nearby high school.

    In the meantime, Sharon had her 2nd AC infusion this past Monday. My impression is except for the fatigue, the side effects were much less this time around.  The fatigue, however, is pretty bad.  For the first 3 days after the infusion she was a bundle of energy.  Now it's an effort to even get the energy to feel tired.

    About 10 days after the first infusion, her hair started to feel really dry and stiff.  Then on day 13, her scalp started to hurt.  Day 15 (the day after the 2nd infusion), the hair storm started and within the one day probably 50% of her hair came out.  She had me get the hair scissors out and had me finish the job so she wouldn't be sitting in a cloud of loose hair.

  • weety
    weety Member Posts: 1,163
    edited May 2012

    Eric, I'm just finding your post, and I'm in full admiration of what a rock you must be for your wife!  As others have said already, her diagnosis is not exceptionally grim--there are many, many women who go through treatment and are around years and years later.  I am so sorry that you are having to go through a cancer situation again with your loved one.  I can only imagine how hard that must have been to lose your young fiancee.  Take care of your wife, but also remember to take care of yourself.  Also, if your fears and feelings about your past situation start to get too strong, please don't hesitate to talk to a professional.  I know that PTSD (post traumatic stress disorder) can be activitated years later by a similar event with similar feelings.  Your wife needs you to be strong, healthy and supportive--emotionally as well!  Take care and keep us all updated on your wife's treatments.

  • eric95us
    eric95us Member Posts: 2,845
    edited May 2012

    She's all done with the AC. Tired, bald, and standing tall! 4 Taxol to go.



    Eric

  • patti13
    patti13 Member Posts: 89
    edited May 2012

    just came across this post.....she is lucky lady to have you there - a/c was terrible - i went thru by myself - has been 1 year and 1 month - and i'm still here and feeling better and better every day - it will take awhile - bald....yes - my hair is almost 2 inches now - it came in curly - can't tell you how many perms i paid for to look like this - the perms just burnt my hair!  silver lining....not trying to be shallow - she should stand tall - chemo is not easy - and hey - hair comes back soon enough. 

  • eric95us
    eric95us Member Posts: 2,845
    edited May 2012

    Wow and amazing. Doing that alone took large amounts of inner strength.

    I hope that didn't come across wrong.



    Eric

Categories