Worried about diagnosis getting worse

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motherofone
motherofone Member Posts: 62
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

It started as likely pure DCIS.  I was told by two surgeons that my prognosis was terrific.  Stage 0.  Both recommended lumpectomy, but I seriously considered mastectomy.  After speaking with a plastic surgeon and a cancer counselor, I decided to go the lumpectomy route with radiation.  My lumpectomy was on March 13.  The pathology returned the next week with news of clean margins but evidence of micro invasion, moving me to stage 1.  My surgeon suggested a second surgery to check SLN since she did not do that during the first surgery believing I had pure DCIS.  On March 27, exactly to weeks from the first surgery, I have my SLN biopsy surgery.  The thought was that I would lose between 1-5 nodes during the procedure, but only 1 "lit" up, so only 1 was removed.  It was explained that if the node is positive for cancer, my treatment changes.  I'm assuming that means chemo.  I suppose that will move me to Stage 2.   Either tomorrow or Wednesday, I will get the results of the biopsy and I'm a nervous wreck.  To complicate matters I look at poster's medical records on here and panic because it seems to be pretty common that the diagnosis just continues to grow and get worse.  Many of you have followed this route, starting small and then more and more and more.  The statistics seem to be in my (our) favor, but why is it that it seems so many ladies' DCIS  diagnosis get worse.  Sorry for being so negative, but I was feeling confident after the first surgery and was floored by the report of invasive cancer.  Now, as the phone call of the pathology report on my SNB creeps closer, I'm a nervous wreck and can't think of anything else.  In my mind, it is not only positive but in reality, the cancer is elsewhere in my body and this is just the tip of the iceberg.  

In addition, there is the guilt.  Yes, I skipped my mammogram by a year and a half.  I was too busy at work, scheduled it, cancelled it, scheduled it, cancelled it.  By the time I finally took time off to go I was a year and half late, hence 2 1/2 years past my previous mammogram.  I haven't discussed this with anyone.  I would just break down if I admitted my stupidity.  I just know that had I not missed my appointment, my diagnosis would be not be growing. 

Rough day, today.  Sorry for whining.  I realize people are going through far worse.  

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  • J9W
    J9W Member Posts: 395
    edited March 2014

    Motherofone,   I'll start by giving you a cyber hug. Next though, don't feel guilty of missing those appointments. You missed them because you were busy living your life - nothing wrong with that at all.  Plus, loads of us do that (me being one), I had a mammo last August but blew off going to see my doctor afterwards, and this year I've decided to skip the annual gyno, and I'm only going to the dentist once a year! My husband has the philosophy that you should only see the doctor when you have an issue....I'm starting to agree with him because for the past few years, I've been overwhelmed with doctor appointments. I'm sorry for you that the dx keeps changing and I hope you get some definitive news soon so you can make a plan.  J9

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  • Jenwith4kids
    Jenwith4kids Member Posts: 635
    edited March 2014

    Hi Motherofone, I wanted to chime in just to say that I too skipped my yearly mammo - - it had been two and half years.  I also ignored a breast dimple..  It took a little while, but I do believe what everyone said: the timing of your mammo, the ignorance of a symptom, probably didn't change too much for me.  Might my cancer have been found earlier?  Maybe. Would they have been aggressive about it?  maybe.  or maybe they would have said I have to watch it for 6 months which would have brought me here anyway eventually.

    Please - you are going through enough now...give up the part about feeling bad for skipping your mammo - or at least try to.  Eventually that will be surpassed by other daily thoughts.  For now, give yourself a break.

    Good luck!  I hope the call comes soon.

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  • Mich71
    Mich71 Member Posts: 45
    edited April 2014

    Please be kind to yourself as so many emotions are part of this process as it is.   I will echo the other ladies when I say that I also delayed a follow-up visit.   I was called back in 2011 for more views yet did not make the time to go as I thought for sure I was only 40 yrs old, no breast cancer in family and I was too busy working, carpooling a child, etc.   At 42, the 2 spots they were concerned about were now 4 spots which resulted in a mastectomy.  Do I ponder the idea that I may have been able to have a lumpectomy only had I went back two years earlier?  Sure, but I try to remember whatever will be, will be sometimes.   I will pray that you receive more positive news than you are expecting.  Hang in there - even if it's only by your fingernails somedays!   Comes with the territory.

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  • Annette47
    Annette47 Member Posts: 957
    edited April 2014

    Don't feel bad about skipping a mammo .... I skipped 3 (went at 40 and 41, and not again until 45) and the only thing that got me to go in when I did was my mother being diagnosed out of the blue with BC about 6 weeks before I was.   Had that not happened, I probably STILL would not have gone in and then where might I be?     

    I understand of course why you are worried about the SNB, especially having the progression of diagnosis "sneak up on you" so to speak (which is different from my experience as my micro-invasion was found on the biopsy), but the odds of any thing having spread are really, really, small.

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  • motherofone
    motherofone Member Posts: 62
    edited April 2014

    Thank you all for the encouragement. I strive to live a life without regrets, but I do regret not going the summer of '12  when I canceled my appointment.  I'm trying to tell myself, that perhaps it all just developed this past year, but I'll never really know.  

    I do have news though...SNB back...Negative!  So relieved!  Looks like rads next then, hopefully (crossing my fingers) I'll be done!

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  • percy4
    percy4 Member Posts: 477
    edited April 2014

    Hello my Dear - Well.  I've had ALL of that.  My low-grade DCIS biopsy result found a microinvasion upon lumpectomy.   First, the lump results had said all DCIS, then they called and "amended" it a week later (you can imagine).  I did learn that the prognosis, with a micro, is only about 1 percent different than just DCIS.  I also had the question about then doing the node biopsy.  In my case, both my MO and surgeon said I didn't need it, as my chance was less than 5% with a micro.  I didn't like those odds (1 in 20) so I hired an outside expert pathologist.  He put my nodal involvement chances at about one third of one percent, not 5%.  I didn't do it, though most do.  That was just me, but your chances of nodal involvement are REMOTE.  As to the late mammo, I have issues about this.  The ACS, etc. recommend yearly mammos for women over 50.  I didn't know that, and my HMO had me on the 2-year-protocol (I now really resent this).  Anyway, I was 2 months late from THAT, and was saying to the tech lady who did the mammo "Wouldn't it be funny if the one time I was a bit late, something happened?", and we both laughed.  Well.  However, ALL docs agreed the "lateness" had not made the difference, and I'm sure that's probably true about you.  I know where you are; I've been there.  The initial wondering phase.  It does pass, with good, hard knowledge (coming soon), and time, and really getting that we are on the really lucky side of this disease.  Love to you - P. xx

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  • percy4
    percy4 Member Posts: 477
    edited April 2014


    Forgot to say.  I had the same thoughts as you, about seeing women here who "started small" and moved up in stage, etc.  It was pointed out to me several times by women who have been here a long time that, while that does sometimes happen, it is obviously the women who have had more problems later than they did in the beginning who are usually Posting about it.  The vast majority who had a small cancer, lumpectomy, rads, and nothing else ever happened are not usually on here anymore.  Take heart, really.

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