newbie! 27 w "complicated" DCIS IDC pathology- weighing 3 opts

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apenelope
apenelope Member Posts: 14
edited June 2014 in IDC (Invasive Ductal Carcinoma)


Hi everyone! I want to introduce myself and hopefully get some advice. (If you don't feel like reading my life story about what's been going on with me these past two years (health-wise- promise I'll leave school, bosses, and SO's out of this... for now), I've bolded what's pertinent to things I need to figure out ASAP). :)


This is my first post- as in I've never posted anywhere on the internet- so please please forgive me if it shows and kindly show me the way.


Here's my story:


I'm 27 and I've been pretty healthy most of my life. Fall of 2011, I moved to the Chicago from Los Angeles for a 6-year grad program and during my second year I started getting all sorts of health problems. First came the migraines and headaches. Then one day, my vision suddenly became blurry and I was seeing an overcast of shadows over everything- this lasted about 10 days. I was extremely concerned because something just didn't feel right. An ophthalmologist told me it was probably an atypical migraine caused by hormonal changes right before my period (estrogen withdrawal?). About a month later, I had a persistent sinus infection that left me in bed with a fever for four days and traveled throughout my face (got an eye infection too) and took over a month to clear up. I disclosed to a few close people that I also felt like I was experiencing a mild cognitive "slip" (my memory, processing, learning, and pxm solving felt a bit off). Everyone told me it's normal for these things to happen to grad students (yeah- normal! and I'm in a health field... oh academia).


Anyhow, after waking up with blood spots on my shirt sometime in June, I was diagnosed with DCIS and had a bmx late August. In between, I had a breast infection that I think was caused by one of the biopsies (I mean I heard the doctor yell "what are you doing?? that's not sterilized!" to the nurse so that seems about right, right?). The infection responded poorly to the first abx I was placed on so I worried it was IBC but the sx went away at the end of the next course of abx so I ruled it out. Moving on. My surgeon was on vacation for a month and I had to wait two months for the surgery (what seemed like forever)- so, you know, I lost my mind a little bit as I surrendered to google day after day after day...


Surgery day finally arrives. FINALLY. At the time of surgery the surgeon said there was no lymph node involvement. Everyone (lovely surgeon included) was happy (I was skeptical but celebrated anyway- post-surgery t-rex arms and all!)... results come in the following week and doctors and PAs are acting discernibly different, much like when I came in the first time and they knew I had cancer but had to wait for the biopsy results to come in to tell me. Turns out they found scattered foci of microinvasion (<.01cm) in all of that DCIS (8.5cm) and three (out of five) LN contained isolated tumor cell clusters (<.02cm)- they're so tiny, clinically, I'm LN negative and they don't have markers for it. During that visit, the doctor lets me know that recommending a tx is difficult because people have different opinions on how this should be handled.


My surgeon said, "personally, I'd go for chemo". The next week they take my case in to a board meeting and tell me they recommend I do nothing (because of my age, the risks of all treatments outweigh the benefits). Two weeks later, I meet with the onco (and I'm guessing this person was at that meeting too) and I'm told to go on Tamoxifen. Difficult, indeed. .


I've been needing to get these things out of my head because I don't even know where to start looking for help on this... really hoping some of you experienced and wise ones might have some insight.

  • Has anyone else had a similar LN finding or know of someone that has? How was it treated?
  • Coupling this pathology with what was happening earlier this year, should I be worried about brain mets? The onco says to "wait for symptoms", but I don't feel comfortable with this approach and I feel like I've BEEN having symptoms.
  • My immune system seems to have lost some strength at about the same time all of my health problems started happening but my GP says it's unrelated to cancer. Anyone know of these things being super coincidental in timing but in reality unrelated?
  • I also just got back blood labs and I'm low on B12, D, and iron. The low B12 is new and I'm hesitant to take another course of abx after my next surgery because I've been on five within less than 6 months and it seems to have created a serious problem in my gut. Anyone not take the preventative abx post-surgery or know of alternatives to abx?






Lastly, on another note... what does "bump" mean?

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2013
    "bump" just makes the post fresh, so it goes to the top of the heap in order for others to see it.

    Dear girl, you have been through it. So sorry. Seriously - unsterilized equipment!!

    About the antibiotics. They did a number on my gut as well. I took them all like a good girl though. I figure I could sort that out later. After all the meds and anxiety I developed what I call "fire-breathing dragon syndrome". My docs all think I'm crazy, but I swear in the early days I could just think a scary thought and I'd feel the acid rising in my throat. I still have it, but it not as bad, and it does clear my sinuses - so it's all good.

    Sorry about the nasty surprise. I had that too. It really really really sucks. Just when you think you might escape - wham - you get hit over the head with a brick.

    My onco ordered a CT scan of the abdomen and a bone scan. It was not protocol, but he thought it might make me feel better. And bless him, it did! Don't jump to any conclusions about anything else, just take it a step at a time.

    Beesie is an expert re:DCIS and microinvasion, so hopefully you'll hear from her. I know others can help you with the LN question.

    I'm sorry you have to deal with this. We are a family here so come back often for love and support.

    Gentle hug to you.
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  • apenelope
    apenelope Member Posts: 14
    edited October 2013


    Oh, I see. Thanks for clarifying, farmerlucydaisy, and for the response- I feel a lot better knowing that this support exists... so glad I stumbled on this forum.


    I've been taking probiotics and they seem to be helping me out. Ended up doing a lot of research on them. I'm glad to hear your fire-breathing dragon syndrome has cleared up but if you happen to find that probiotics are useful for you, I've done quite a bit of research and can recommend a few. Also, I can imagine how frustrating it must be to have your doctors think you are crazy... anyone at that- especially when it makes you start doubting yourself (or maybe that's just me!).


    Your onco sounds amazing! I'm being seen at a really good institution but they just refuse to do anything more than what they're required to... it's like they never read a paper on what stress and anxiety can do to your body- not cool at all. I'll take on anything that comes my way, it's the uncertainty that has me lost.


    An expert sounds just like what I need! Really hoping to hear from others about the LN. I probably should've been more succinct in my original post. hahh

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2013
    I think it would be perfectly fine to private message Beesie - She is incredibly helpful, she just may not have see your post.

    OR You might try posting your original message on the Just Diagnosed forum. It is pretty active and I know there are ladies who can help you there.
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  • apenelope
    apenelope Member Posts: 14
    edited October 2013


    Thank you for the suggestions! I think I'll do both :)

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited October 2013
    apenelope - That is what I love about these boards~ You never know who is helping who! I thought about the whole probiotic thing you mentioned and decided to give it a try. I realized that the Yoplait Lite I eat all the time has NO probiotics, so I found some yummy stuff at Sprouts. It seemed to help immediately. Last night I went to Target and bought some probiotic capsules. I think you may have cracked the case! Thank you.

    I would be very interested in what probiotics you use.

    I hope you are doing well. It takes a while to digest all this stuff (no pun intended). At first it is the only thing you think of, but it DOES get better. I promise.

    I'm here if you need me.
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  • apenelope
    apenelope Member Posts: 14
    edited November 2013


    That's great to hear!! Right now I'm using PB8's veggie formula because I can't afford the really good stuff and they're vegan, but I think it's good for the price. It has to be refrigerated, though- sort of a pain if you like to carry your supplements/meds with you or need to travel. Dr. Ohhira's is pricey but I hear it's really good. From what I've read, what's really important is that they're high in lactobacillus and bifidobacterium. A naturopathic doctor recently recommended I try MegaSporeBiotic, but I'm going to wait until I run out of what I have now.


    I'll be having reconstructive surgery next week so I'm looking forward to being closer to when it finally gets better. Thank you for the support- I truly appreciate it. :) Hope you are well too!

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