Thinking outside the box

Options
Akitagirl
Akitagirl Member Posts: 142

Hi Everyone,

I am a 42 yo with no fam hx of cancer joining this incredible group with a recent dx of IDC (1.9 cm, grade 1, ER/PR+, HER2-, BRCA pending - clinical stage 1).  As a nurse practitioner, it is very difficult to be a patient and not a provider.  Even with this not my first rodeo, as I have had two craniotomies to remove recurrent benign brain tumors.  One would think that brain surgery trumps breast surgery and this should be a breeze...however, that is not true.  People cannot see the scar covered by hair or the missing temporal lobe covered by skull.  In fact, nobody would ever guess that I have had any type of surgery.  Yet with breast cancer, it feels like I am standing in front of a full stadium - naked, singing the National Anthem in the wrong key.  Very uncomfortable indeed!

At any rate, I am approaching this with three goals:  remove tumor, retain nipple/areola and avoid axillary node dissection.  Unfortunately I have very small breasts, and have always joked with my pregnant patients who complain about their breasts becoming too large...I am a Wanna B who became a B and unfortunately went back to being a Wanna B after all was said and done with my one pregnancy.  Also, the tumor is sub-areolar and already causing mild skin retraction (how did I not see this???)  So, I met with MO and RO yesterday and discussed options.  I have done a lot of research and believe that we could succeed with a nipple sparing mastectomy.  If there is not enough clear margin, then we could conduct focused radiation on that area.  Also, if there are positive nodes, as long as they were not greater than 2 mm, then we could also complete focused axillary radiation while avoiding complete dissection.  Amazingly enough, the RO was completely and pleasantly surprised, stating that he really does not believe a complete dissection has any better outcome than radiation alone.  Even though it is not standard of care, as long as it is possible, he will consider both!  I also believe my younger BS is on board with at least attempting this plan. 

Obviously this plan may carry risk and would not be for everyone.  However, I thought it might stir some interesting discussion and I am wondering if anyone has also tried this method?

Finally, it is absolutely amazing to me how things have changed and how patients now have this huge menu to choose from!  On one hand, that is fantastic to allow women more control.  On the other hand, it might work better to simply be told what needs to happen.  Yes, there is a set of guidelines providing the standard of care with Level A1 recommendations...yet there are several choices within that set of guidelines.  This has certainly been a confusing and learning experience for sure.

Akitagirl (missing my furry friend of 13 years)

Comments

  • muska
    muska Member Posts: 1,195
    edited September 2014

    Hi Akitagirl, I am sorry you are here. Speaking of the three goals you mentioned - remove tumor, retain nipple/areola and avoid axillary node dissection - I think the first and the last are pretty much standard of care now in the US. As for nipple/areola I wouldn't "fight" to keep it if clear margins were not achievable. You certainly know that all feeling will be lost there anyway.

    I suppose you plan to have reconstruction. It might make sense to discuss this with your plastic surgeon as radiation might matter.

    Best of luck to you in whatever tx you choose. Feel free to PM if you have any specific questions about nipple sparing surgery or anything else.

  • Moderators
    Moderators Member Posts: 25,912
    edited September 2014

    Akitagirl, Welcome to the BCO community. We are sorry that you have been diagnosed with breast cancer but glad that you have reached out to this group of informed and generous others. Everyone here has personal experiences to share and discuss and we hope that you will find it helpful. Here is a link to some information on our own site on Nipple Sparing Mastectomy. The best of luck to you going forward and please keep us updated on how things progress for you. The Mods

  • Akitagirl
    Akitagirl Member Posts: 142
    edited September 2014

    Well...back to the drawing board.  Just saw my dermatologist yesterday and a skin biopsy came back confirming discoid lupus.  We began discussing SLE and the realization came to that I do probably have SLE - generalized alopecia, ischemic stroke last year, occasional blurry vision, etc.  So, now I am thinking radiation is not such a good idea.  

    I do plan on reconstruction and augmentation, but now I wonder if I will have issues with healing.  So many questions.  Well, I think I have come to my limit and am extremely overwhelmed.  

    Trying not to panic, trying not to cry, trying not to lose my hope, trying not to die.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2014

    It is obvious from your posts that you're quite eloquent and intelligent.  It makes sense that you would do all possible research before deciding. And, of course you have "one-up" on most of us, being in the health field. 

    But you just said you are "at your limit" and "overwhelmed."  After this, you said you're trying not to "cry," "panic," etc. I would counsel you to go ahead and let down your walls periodically.  You're facing a lot. My cancer diagnosis is very close to yours.  I did not have your other challenges, but I had different ones.  I faced them all alone (as a working single Mother), and I did a great job remaining very stoic. Until I didn't. 

    I see people who panic at the very first possibility of a result that may require some kind of further testing, and whose life is consumed with worry. I was at the other end. That can be really tough and leave one so drained that it can be hard to accept and acknowledge that this really is a big deal.  Sometimes, it might be best to go ahead and have a night of panic and crying.  If you don't occasionally let yourself do a little wallowing in it, then it can be easy to morph over into your other listed options, concentrating your efforts on irrational thoughts like losing hope and dying.

    You have a pathology that provide an incredibly comforting prognosis.  I was very similar to you, age 46 at diagnosis (might have been 45?), with a 1.8cm IDC tumor that was ER+/PR+, and a second primary tumor found in my mastectomy specimen (I don't know much about that one). I believe I recall that my 5 year survival rate after surgery was 95%+ - even before any more treatments.

    I was not given much of a choice of treatments, though I could choose radiation plus lumpectomy or mastectomy with no radiation. Knowing radiation can cause its own problems, and being of a "get it out of me" mentality - I opted for mastectomy.  Knowing myself as one who would worry that an implant might hide a recurrence, or cause pain that made me question the cause, I've opted for no reconstruction. I was told I had to do chemo, but I took one treatment and stopped it (long story of extreme intolerance...I even vomited after getting valium for a colonoscopy!). I did end up doing 5 years of anti-hormonal treatments (Tamoxifen and Aromasin).  And I am now 9.5 years NED with no worry that I

    I'm so sorry you're here. I personally think you're past the hardest part (waiting).  But that doesn't mean the next few months will be easy.  Lean on those who can help you.  Succumb to an "umbrella drink" once in a while (if you like those).  And check out the thread someone just started in which they're counting their blessings. For me, I like to think about how I live in a time in which medicine is so advanced that we catch some tumors early, and have research that aids in treatment, and that we can, in fact, take part in those treatments. 

    One day at a time until you no longer have to think that way (it won't be long).   Best to ya! 

  • Akitagirl
    Akitagirl Member Posts: 142
    edited September 2014

    @whatnow:  Thank you for your words of wisdom and understanding.  I agree that my diagnosis pales in comparison to what so many other women have had to endure.  I will probably end up taking the chemo, as I have had too many crazy things happen to me, doing the treatment will help me psychologically more than anything.  May I ask how much time you had to take off from work?  I am thinking that I should be able to return at 4 weeks or less after surgery.  I am no longer practicing (thank goodness) and work from home as a portfolio director in the pharmaceutical research and development industry.  I figure I could certainly sit and type, answer calls and attend teleconferences.  What are your thoughts/recommendations?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2014

    Gosh, I wish I could tell you how long your recovery will take. It depends on your procedures, and everyone responds SO differently.  You mentioned a mastectomy, but didn't say if you're doing a prophylactic bilateral, or unilateral only. That makes a huge difference.  I had only the affected breast removed, no reconstruction.  Did it on a Wednesday and got home on Thursday morning.  I COULD have gone to my daughter's concert that night except I wanted to wash my hair and I knew that would wear me out too much to do both.  Anyway, I had a desk job and I was at work the following Monday (though I was miserable and went home at lunch). But then I was at work full time again.  So I had 5 days, but immediate reconstruction is different I'm sure, and a bilateral is very different.  This is not to say I was "well" at this time, but I had no choice but to work.  I took chemo very hard, but I also had it on a Wednesday and was at work Monday.  But I could not function Wed/Thu/Fri/Sat.  However, I seem to have been affected much more than most people.  And it depends on what kind you get.  Some are harder than others.  I had ACT, which includes "The Red Devil" - nasty stuff, especially for someone with such a sensitive digestive system.  Antibiotics make me nauseated.  I vomited after a cesarean even though they gave me anti-emetics.  I vomited every half hour for 24 hours after one chemo treatment even though I also had anti-emetics.  I vomited after my mastectomy. 

    Anyway, perhaps they might not even recommend chemo for you--things have changed a lot, and different oncologists are quite different in what they recommend.  My (2nd) oncologist (I was kicked to the curb by my first doc's front desk staff when I said I wasn't sure I wanted to keep doing chemo) said the anti-hormone therapy was a lot more important in my situation than chemo.  It was very hard to say yes to either, knowing the long term/lifetime risks, when I had such a low chance of recurrence. 

    Best luck

  • Akitagirl
    Akitagirl Member Posts: 142
    edited September 2014

    Thank you!  That is great information and gives me a benchmark of sorts.  Right now I am planning a unilateral mastectomy with immediate reconstruction.  However, if the BRCA comes back positive, then I will strongly reconsider a bilateral.  You are incredibly strong to have gone back so early - desk job or not.  I hurt for you that you went through this as a single mom, I cannot even imagine.  I will probably take the full time recommended by my BS

    At this point, I have been offered chemo already and will probably do a TC regimen.  I just know of too many cases where patients had negative oncotype and/or negative Mammaprint and came back a couple of years later with mets.  I just want to be aggressive now to hopefully prevent any reoccurance.  

    As for hormone therapy, I really cannot take it due to my coagulation factors.  Too much of a stroke risk.  I must say that I am NOT disappointed with that recommendation.  :-)

    Surgery scheduled for the 28th of October.  Hanging in there!  Thanks again.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2014

    Hmmm....I'm very curious about the coagulation factor you mentioned, and stroke risk.  A few months after coming off Aromasin, I began to have severe migraines (with aura).  My symptoms were stroke-like and of course I had to get brain MRIs to rule out mets (and those MRIs were negative).  They got worse and worse of the past several years until I ultimately had to close my 20-year-old business (I have temporary cognitive loss-such as not recognizing my own daughter's name, visual disturbances/loss, inability to see/read/understand, numb tongue, plus the severe migraine pain which comes after these "spells," as my first (of four) neurologists called them).  I'm continuing to look for an answer but my family practice dr. continues to think "heart" due to my shortness of breath.  I didn't have much of the testing that a lot of people get today, though I did have a MUGA scan of my heart before beginning treatment, and it was fine.  I developed a heart murmur during chemo treatment and they ordered an ECHO, but it was also fine and the murmur eventually disappeared.  I also had high cholesterol but Lipitor nipped that in the bud quickly.

    So, what does your "coagulation factor" indicate? (I've not heard it mentioned before).

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited September 2014

    There are varying blood tests to check for abnormal clotting syndromes. The did them as part of my blood workup when I had a PE.

  • Akitagirl
    Akitagirl Member Posts: 142
    edited September 2014

    whatnow - I very much sympathize with what you are enduring.  It is so very difficult to have real symptoms that nobody can find an 'objective' answer to.  Regarding your question...lthough I am extremely active as a competitive adult figure skater and a runner, I had a stroke last November.  I was in the hospital and had every test imaginable.  My case was very complex as I have had two brain surgeries in the past, and many times the practitioners only see that history and not the big picture.  They did find a nice sized DVT in my right leg, yet I don't have a PFO (patent foramen ovale - aka hole in the heart between chambers), so that really couldn't have been the cause.  I was discharged with the final diagnosis of "functional stroke".  Now, as a medical professional, I know that actually means "psychosomatic stroke".  However, we don't use that phrase anymore because it can cause legal action if that assessment is incorrect.  That really, really made me angry.  Fast forward to a f/u appointment with a neurologist who specializes in autoimmune vasculitis and other less known causes of stroke.  The bottom line is that he did prove objective evidence that I did have a stroke and eventually we discovered that I have intermittant atrial fibrillation.  Add that to the newly diagnosed SLE...major coagulation risk for sure.  Both of these can cause blood to clot, yet won't show up in pt/ptt or INR labs.  Therefore, I am on a Factor Xa inhibitor called Apixaban.  This is also going to affect my decision regarding hormone therapy, as I know the risk of clotting increases with Tamoxifen.  Therefore, I am strongly considering not taking any and just having an oophorectomy.

    I encourage you to speak with your doctor and see if there are any signs that point to possible blood clotting disorder.  As Melissa says above, there is a huge coag panel (Factor V leiden, ANA, IgG, etc) that can lend information for the correct diagnosis.  If anything, I have learned to trust my body, trust my instincts and ask lots of questions when I don't understand.  

    all my best,

    akitagirl

    P.S. have they performed a stress test on you?

Categories