Just a gut feeling

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inthemoment
inthemoment Member Posts: 538
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I had a fibroadenoma removed 2 years ago, but never felt very confident that something hadn't been overlooked during that surgery - surgeon was very cavaliere, said he was 100% certain before the surgery that was all it was, although classified as Bi-rads 4.  I felt a hard swelling around the nipple on the same breast about 2 months ago, and waited until my scheduled gyn appointment to see if it was felt by the doc (didn't say anything about what I felt until she hesitated over the area, then told her I felt it too).  Went immediately for a diagnostic mammogram (neg) and sonogram (also neg) - went to a different breast surgeon who did a core biopsy (she took 10 core samples to be sure she covered the whole area since it was fairly large) - core biopsy came back normal breast tissue, adipose and fibrosis.  She gave me the option of waiting 3 months and checking again or open surgical biopsy, which she felt would be negative.  My gut feeling was that there was something there, so Wednesday I had the surgical excision.  In recovery she told me she expected a negative path report, but when I called her today for results, she asked me to come in to discuss the results...so, I knew.  To her amazement, the tissue that was sampled by core biopsy was confirmed by the pathologist to have been just dense breast tissue, but "hiding" behind that was invasive ductal carcinoma, about 1.7cm.  That size is approximate, because it was just a portion of the whole sample, presumed to be negative.  The surgeon said she was so glad that I decided to follow my instinct and have the surgical biopsy!  I will be having bone scan, MRI, PET scan next week.  She is recommending a mastectomy, since the cancer is right next to the nipple, followed by chemo. The formal path report will be Monday, but all I know now is that it is estrogen and progesterone receptive.  What I am thankful for is that it's been found, and what I am angry about is that I was intimidated by the first surgeon, and didn't push harder - lesson learned

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  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2009

    I'm so sorry that you've had a positive biopsy, but your story is a perfect example of the need to listen to our gut feelings, as well as be our own advocates.  Unfortunately, doctors aren't always right, but we often don't figure that out until we've dealt with quite a few of them.  Plus, we want to believe there's nothing to worry about when that's what we're told, and we don't want to be thought of as hypocondriacs -- so sometimes it's very difficult to know how much to question a diagnosis or push for more tests.

    But it sounds like you are in good hands now.  I hope you'll keep us posted on your next step.  There are many knowledgeable women here who will be quick to watch your back if they feel anything about your treatment needs to be questioned!   Take care ~  Deanna

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  • apple
    apple Member Posts: 7,799
    edited February 2009

    you are very lucky to have been so diligent.  wishing you luck.

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  • LizM
    LizM Member Posts: 963
    edited February 2009

    Your gut served you well.  It will also help you in the decisions you have to make from this day forward.  My situation was a little different but similar in some respects.  In fall 2004, I was diagnosed with atypical cells from a stereo biopsy and excisional biopsy after microcalcifications were seen on mammogram.  I had a thickened area that I was still uncomfortable with but two breast surgeons and many other professionals told me it was just fibrosystic dense breast tissue.  Mammogram and ultrasound also showed nothing.  I was obsessed with this thickened area.  I would have ever doctor feel it.  Fast forward to 10 months later in fall 2005 I went in for mammo and ultrasound.  I had convinced by breast surgeon to request a diagnostic because of having aytypical cells and the thickened area.  The mamo was fine and I reminded the tech I was to have an ultrasound.  Thankfully the radiologist did the ultrasound and while she was doing it I started running my mouth about the thickened area and having aytpical cells and how I was worried about the area and could she check it very carefully.  The radiologist spent a long time doing the ultrasound on the left breast and finally she found something.  The next day I had a biopsy and it was in fact breast cancer.  I knew in my gut all along that something was wrong.  the biopsy showed it to be 1.5 cm.  I opted for a bi-lateral mastectomy because I did not trust imaging and knew I would worry myself sick about the other breast.  My final pathology turned out to be a 2.1 cm tumor with 1 positive lymph node.  I asked about the thickened area and was told my breast cancer was hiding under fibrosystic dense breast tissue.  The tumor was never felt and was deep only 2 mm from the chest wall.  My good breast showed atypical cells so probably would have cooked up the same thing.  Since my gut was right about having breast cancer, I followed my gut through all of my decisions for treatment which included a bi-lateral mastectomy with reconstruction, aggressive chemo, radiation, oophorectomy and now hormone therapy.  I know these decisions are not easy to make but by reading your story and how diligent you were in finding your breast cancer, I am sure you will have no trouble making the right decisions for you.  Take care and hang in there.  

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  • inthemoment
    inthemoment Member Posts: 538
    edited February 2009

    Thank you for the good wishes.  I'm still shell shocked and am not reacting emotionally to anything right now.  My next big hurdle will be telling my 29 year old daughter who came back last night from a vacation in Mexico.  She has had her own serious health issues and I know she will be scared to death about this.  I want to protect her, but know that she will have to get her support from others right now, as I have to use my strength to fight this battle. 

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited February 2009

    Inthemoment I'm so sorry you have to join our "club" - but wow girl, you GO! Rock on An angel was guiding your instincts - and how brave you were to go with the incisional biopsy. I know if it had been me I would have been in complete denial - I even argued with my radiologist AGAINST getting the biopsy because I couldn't feel a lump, even though she saw it on the mammo. All I've been through this past year has made me realize that we MUST educate ourselves and advocate for ourselves and families......and I no longer stick my head in the sand about anything, especially when it comes to my kids! 

    Thanks so much for sharing your story and I hope you'll stay with us here. This message board has been a HUGE help for me - the women so intelligent and kind - I'll be praying that your surgery and treatments go very smoothly for you.  angel

    P.S.  Oh we overlapped each other posting! I just want to add that my daughters (23 & 21) were so scared when I told them last year - it was very difficult - but at that time I was also shell-shocked and it helped a bit to break the news to them (which I did in person - I didn't want to tell them over the phone - they are both away at the same college.) It broke my heart to see my daughters get teary-eyed and upset so I kept telling them the GOOD news is we caught this beast VERY early and the mastectomy would BLAST it to kingdom come (thus my Signourney Weaver warrior photo - I picture BC as an "alien" taking over my body.) I'm so sorry that your daugher has health problems - I got a small taste of that with my oldest who has colitis and just this past month a bad case of mono complicated by an anaphylactic reaction to a antibiotic she never should have received from a nurse practitioner at her college.

    I hope your daughter will be OK and that you'll remain strong to get through the next phase of your battle! Hang in there!  sigh

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited February 2009

    inthemoment, let me say what everyone else has said -- it's great that you trusted your gut instinct.

    I'm posting because I can totally relate to "small IDC but proximity to nipple indicates mastectomy."  That was my situation, too -- the IDC was invading the nipple-areola complex, so all opinions I got recommended mastectomy.  At the time, I felt very bad about losing my breast, but now, almost 2 years later, the mastectomy was doable, I'm happy with my unilateral silicone implant reconstruction, and I feel incredibly blessed not to have needed chemo or radiation (if I'd had a lumpectomy, I would have needed radiation for sure, and possibly chemo).

    You're probably being plunged into a crash course in breast cancer -- all of a sudden we have to learn this whole new field of terminology and surgical and treatment options.  One thing I would suggest is to ask your surgeon if she can send the tumor for Oncotype DX testing now.  This is a test of the genetics of the tumor (not your own genes, not the BRCA gene, but the mutated genes of the cancer itself).  It is valid for early-stage estrogen-positive tumors The test results are reported as a score that indicates likelihood of recurrence and likely benefit of chemo.  I had a fairly low score, so I didn't have chemo. BUT - like you, I had excisional biopsy (bx) first and then mastectomy (mx).  The Oncotype Dx test wasn't ordered until I met with oncologist 4 weeks after mx.  The sample first sent for testing was from the mx -- and 2 weeks later the report came back "not enough tissue for testing"!  So then they sent the bx sample.  Fortunately, I had a low enough score that chemo was not recommended anyway, so the delay didn't matter -- but it would be great if you could avoid possible confusion and delay, and just ask your surgeon to order Oncotype DX on the excised tumor now.

    My son was 23 and away at college -- I too waited until I could tell him in person.  He was home the night before my mastectomy, and that's when he cried -- I felt like it was 20 years earlier when you just tell your kids, "everything will be fine." 

    Hope everything goes well with your daughter -- and with you (keeping my fingers crossed for low Oncotype DX score).

    Hugs,

    Ann

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  • TexasGal
    TexasGal Member Posts: 36
    edited February 2009

    This is very similar to what happened to me as well. I felt a thickened lump and saw my regular doctor. He thought it was a fibroadenoma because it wasn't hard like cancer, sharp like cancer, or stationary like cancer. He didn't think there was much to worry about because of this, but I wanted it O-U-T! He removed it and INSIDE it was a 1.2 cm IDC. I am now 1 year post MX and all my tests are coming back great. I'm glad you're doing well, and that we found these in time.

    TexasGal

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  • AccidentalTourist
    AccidentalTourist Member Posts: 365
    edited February 2009

    I also got tested only because I insisted there was something that was not there before (I had no lump only a dimple).  As a result I do not feel reassured at six months follow-up by oncologist telling me that it all looks great and that there is no need for mammogram.  I asked for a MRI and again he said that there is no need.  I told him that I need it.  I mentioned reading on this site that in America BC sufferers have mammos at six months follow ups as well as MRIs and he said 'We all know why that is'.  I don't know what he meant, presumably he means that it is all big business in America but I am hoping to have MRI privately in May.  Good luck with your treatment.

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  • inthemoment
    inthemoment Member Posts: 538
    edited February 2009

    Just got off the phone telling my daughter (unable to tell her in person).  She reacted appropriately to the shock, became somewhat hysterical, but that only lasted a few minutes.  Then she asked questions and wanted to "do something" for me.  I told her she already had, by easing my mind that she would be able to be my support, rather than my worry!  She is coming up to spend the night with me and my SO tonight, so we're ordering Chinese and a couple of glaases of pino - life will go on!

    Thanks everyone for the wisdom of experience...someday I will be able to share that with others

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  • mzmiller99
    mzmiller99 Member Posts: 894
    edited February 2009

    inthemoment - Can't think of a better way to share the news than with Chinese and vino!!

    Thank God for our big kids - my four were all a huge help to me, even my daughters-in-law!!  (One of whom went with me for my re-excision!)

    Keep our prayers and hugs close to your heart!

    Susan

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  • Ivy
    Ivy Member Posts: 31
    edited February 2009

    inthemoment - I just join with everyone in being glad that you went with your gut instinct.  It is not reassuring when we who are untrained can catch things that doctors dismiss - but every story we hear like this can give us all courage to go with our instinct!  I'm sorry you need to have a mastectomy.  I hope it goes as well as possible.  Please keep us posted.  AnnNYC, may I ask what your low Oncotype score was?  The score played a big part in my life.  Mine was 20 and I had prayed it would be 10.  But I skipped chemo nonetheless, with my onc's blessing.

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  • lovinmomma
    lovinmomma Member Posts: 1,879
    edited February 2009

    I am glad that you followed your gut. I ma sorry that you are here, but glad you caught it!

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited February 2009

    Hi Ivy, my score was 16, and I was 54 at the time -- my onc thought it was fine to skip chemo, and I did too.  I wasn't on this board at the time -- when I started reading here about 9 months later, I had a few bouts of doubt, but when I thought back to the onc explaining how small the added benefit was from chemo, I'm reassured that we made the right decision.

    Glad all went well with telling your daughter, inthemoment.

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  • inthemoment
    inthemoment Member Posts: 538
    edited February 2009

    I received the final pathology report on the excisional biopsy yesterday.  Since I have had all of 4 hours of sleep (?) I thought I'd get on the computer and ask for some input on these results.  The report indicates:

    5% of tumor mass (mass 1.7 cm) is DCIS (intermediate grade, cribiform without necrosis)

    Grade 3/3

    Architectural grade 3/3

    Nuclear grade 3/3

    Mitotic Rate >10/10 HPF

    Lymphatic invasion: present, multifocal

    Microcalcification: In situ duct carcinoma

    Mucin stain on one block is positive and shos signet ring feature in a minor component of the tumor.

    ER+ >95% High intensity nuclear stain

    PR+ >90%, High to low intensity nuclear stain

    HER2 pending

    E-Cadherin (2 blocks) Positive in 90% of tumor

    Smooth muscle myosin negative in invasive carcinoma, positive in DCIS

    D2-40, lymphatic marker - positive

    Impression - poorly differentiated invasive carcinoma with rare foci of signet ring features.  A minor component of the tumor has smaller nuclei and is immunophenotypically that of an invasive lobular carcinoma.

    The surgeon spent a lot of time reviewing the report with me, and even though I am a nurse, I didn't retain much after I saw grade 3 and mitotic rate.  Seems to me I have 3 types of tumor charactaristics - IDC, DCIS and ILC.  We had already decided on a mastectomy because the tumor is very near the nipple, so that decision was just confirmed by the aggressive nature of the cancer.

    I start all the scans today - bone, pet/ct, mri both breast (considering pmx other breast), MUGA scan - appointments with onc and ps - surgery March 10th.

    Help - I am outwardly strong, but crumbling on the inside - already on xanex for anxiety before all this.  Have to stop smoking, live alone but have SO who has been great so far, terrified of chemo which the surgeon has already told me will "blast" with everthing they have.  Can't/won't show this side of me to anyone else but you girls.

    Thanks

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  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2009

    inthemoment ~  I'll leave the analysis of your path to others here who are really good at translating and helping you understand that information, and I'm sure one of them will be along shortly.  In the mean time, I just wanted to reach out with a cyber (((hug))) and tell you that everything is going to be okay.  I was exactly where you are a year ago, so I know how surreal it feels right now.  But you are strong -- stronger than you realize right now -- and you will get through this.  Just try really hard to stay focused on one thing at a time.  Has your surgeon discussed reconstruction options with you?    Deanna

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  • LizM
    LizM Member Posts: 963
    edited February 2009

    inthemoment,

    Most pathology reports have good and bad in them and most breast cancers are grade 2 and 3.  Try to focus on the good, which is ER and PR positive and means you are a candidate for hormone therapy.  Hopefully, your her2 will be negative but if it is positive, you will be a candidate for herceptin.  The way your path report reads it seems like most of the tumor is ductal with a smaller portion being lobular and a small amount of DCIS.  Usually higher grade and faster growing tumors respond better to chemo and I suspect chemo will be in your future.  Having lymphatic invasion present, while not a good prognostic factor, won't carry that much weight if  your nodes are negative.  If you do have positive nodes, it won't matter that much either.   Your pathology could also change after your mastectomy.  My pathology changed from my biopsy to my final pathology.  In fact my final pathology was better than my biopsy.  My grade change from 2 to 1 and I changed from having just ductal to having both ductal and lobular.  My biopsy had a high KI67 which still haunts me to this day but my final pathology had a low miotic count.  Remember your final results are not in yet and also remember that I was diagnosed over 3 years ago with a 2 cm tumor and positive node and I am doing just fine.    

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  • fairy49
    fairy49 Member Posts: 1,245
    edited February 2009

    inthemoment, I can't help with the pathology report, Lizm gave good info as she says the path can change after surgery, mine did also.  I just wanted you to know that we are all here for you, that we are praying for you and we all know what you are feeling right now, it sucks plain and simple, however. once you have the surgery and have your treatment plan in place you will move forward, as hard as that sounds right now, not knowing is the worst part.  Good luck with your scans, please keep us posted on how you are doing!

    Lorraine ox

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  • inthemoment
    inthemoment Member Posts: 538
    edited February 2009

    Thank you all....the support and knowledge here have been terrific at a time when I can't go this alone (although that's my basic personality - you all know the type :)

    Had bone scan yesterday, ps and onc appointments today.  Yes, Liz..I know chemo will follow mastectomy - that's the part I'm most scared of.  I will try to stay positive and wait for final path report.

    Geri

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  • inthemoment
    inthemoment Member Posts: 538
    edited February 2009

    What a week...had my bone and MUGA scans, onc and p/s consults...onc says I will get 4 cycles of A/C and 12 weeks of Taxol after that.  Scared to death about the chemo - can anyone help prepare me for this, which he says is standard of care for my cancer.  Doesn't yet know about the rads, says we have to have scan results and staging with nodes after mastectomy which is scheduled for 3/11.  Guess I will start chemo in April - 6 months of chemo and possible radiation - I know I can do it, but it's hard to imagine how!  Leaving for Florida tomorrow for 5 days on a vacation planned before all this happened (hard to believe I knew none of this 7 days ago).

    When I return I get the MRI of both breasts and PET scan, and then the surgery - as I have read on these posts many times - very surreal.

    Geri 

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  • fairy49
    fairy49 Member Posts: 1,245
    edited February 2009

    Geri, gosh what a week for you, its such a whirlwind...to me it all seemed like a really bad dream. After your surgery are they going to order the oncotype DX test before deciding on chemo? I hope you have wonderful vacation you deserve it!

    Lorraine

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  • LizM
    LizM Member Posts: 963
    edited February 2009

    Geri,

    I was extremely afraid of chemo but I did fine.  I started chemo 5 weeks after my bi-lateral.  I had 4 dose dense (every 2 week) AC followed by 4 DD Taxol.  I worked through my treatment which lasted 4 months.  Is your oncologist recommending dose dense AC.  I liked having it every 2 weeks because it was over sooner and because some studies show DD is slightly more effective.  One thing that really helped keep up my energy was exercising.  I walked on the treadmill regularly through chemo.  I recommend before you start that you go to the chemo discussion area of this forum.  Sharing stories and tips with my chemo buddies here on this site really helped me cope.  I started reading the threads before I started and felt prepared when I began treatment.  Try to take it one step at a time which right now is preparing yourself for surgery.  There will be plenty of time after your surgery to prepare for chemo and plenty of time after chemo to prepare for radiation if you find out you need it.  It is long journey but one that many of us here have taken.  Your are not alone, we are all here for you.  Hang in there.  You will be fine.     

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  • inthemoment
    inthemoment Member Posts: 538
    edited March 2009

    Hi all - just returned from Florida today, and the "break" for 5 days was what I needed to get my thoughts straight - or at least I tried to!  Going for MRI of breasts tomorrow and PET on Friday - mastectomy on Tuesday.  Called the surgeon today to see if any results from bone scan and MUGA - MUGA fine, but wants me to have a cervical spine x-ray "nothing to worry about...probably arthritis...did I hear that right? Nothing to worry about...probably arthritis????  I am quickly learning that there is EVERYTHING to worry about, and PROBABLY is not in my vocabulary anymore.  So, a few more prayers and another test...keep me in your thoughts, as I know you do all of us.

    Geri

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  • navygirl
    navygirl Member Posts: 886
    edited March 2009

    Geri, so glad you are home safely...I was just looking to see if you had returned yet...I found your post while you were gone ;)

    Good idea...taking probably our of your vocabulary! I hope it is arthritis...but we can't assume anything once we have be dx with cancer. I wish you lots of love and luck with your surgery. Did you check out the thread on what to bring and how to prepare? I also had a double and I found lots of the information useful...

    Good luck...let us know if you have questions before hand and then how you are once you are home! We'll be thinking of you.

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  • sherryw
    sherryw Member Posts: 172
    edited March 2009

    Geri,

    I'm glad you had a nice trip.  Did you ever think of saying 2 weeks ago ( Oh, I hope it is Arthritis)

    No, But now that's how we have to think, that we will welcome the lesser of 2 evils.

    Sherry

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  • inthemoment
    inthemoment Member Posts: 538
    edited March 2009

    Hi all,

    Had MRI today - wet reading is that only the known breast cancer showing up.  I forgot to ask about size on the MRI, but what I've read here is that it's not really that reliable. Sooo, I wait for the final path report.

    I did find out I'm Her2+, and Herceptin is in my future. Kind of a blow, as I was not counting on even more treatments, but why should I be suprised, nothing has been what it seemed since the start of this.

    One foot in front of the other

    Geri                                  

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  • LizM
    LizM Member Posts: 963
    edited March 2009

    Hang in there Geri,

    You are truly at the worst and scariest part of your journey when you don't know exactly what you are dealing with.  It will get better.  I was absolutely petrified before my bi-lateral surgery in 2005 because the day before my surgery they called and told me they saw something on my chest X-ray and wanted to due a thorasic CT scan.  I was convinced the cancer had spread thoughout my body and that I was doomed.  God works in mysterious ways - the CT scan came back normal and so the next day when I had my surgery and found out my sentinel node was positive I was not as upset because I had the good news of a clear scan the day before and was relieved with stage II breast cancer instead of stage IV.  The journey is full of highs and lows. good news and bad news.  I have learned to cherish the highs and prepare myself for the lows.  Hang in there and keep us posted.       

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  • inthemoment
    inthemoment Member Posts: 538
    edited March 2009

    Thank you for the perspective Liz, I need to keep my thoughts focused on the positive, and I really amaze myself at times that I can pull that off.  Today I made myself go to my neice's bridal shower, even though I felt I had so much to do to get ready for Tuesday's surgery.  It was somewhat awkward at first, since my brothers showed up to see me at the shower ( 2 of the 3 live within an hour of me).  I also got to spend the day with my younger daughter, the one I was most worried about handling this.  It turned out I was glad I went, and when my daughter walked me to my car, she gave me a big hug, and proceeded to squeeze my boobie and said goodbye to it!  I thought that was very sweet, but reminded her we were in a public parking lot, in the middle of the day, and it might look a bit weird to be talking to my boob...she said "who cares...bye boob, bye cancer!"  Made my day!

    Geri 

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  • LizM
    LizM Member Posts: 963
    edited March 2009

    Geri,

    Just checking on you.  Hope and pray your surgery went well.  We are all hear for you if  you need us. 

    Take Care,

    Liz

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  • Tina-in-Seattle
    Tina-in-Seattle Member Posts: 100
    edited March 2009

    Good for you!  I showed my doctor a change in my left breast twice and she blew it off.  My mammo came back showing a change and behind dense breast tissue they found two tumors.  I should have told her I wanted another test but didn't listen to my gut.  Good for you for doing that and being your own adovcate.  Lesson learned for me too.

    I am two weeks out of a bilateral mastectomy with reconstruction.  Nodes are clear and the biggest of the two was 2 cm.  So all looks good.

    Best to you, big hugs

    Tina

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  • inthemoment
    inthemoment Member Posts: 538
    edited March 2009

    Had my mastectomy last Tuesday (March 10th).  Stayed in the hospital until Thursday - surgeon would have kept me another day if I had wanted, but really felt I would be better at home, and I was.  Drain (only 1 ) went home with me (reconst. with saline begun in OR).  Drain plugged on Thursday nite - oh no, says p/s - must just be minimal drainage.  Oh yes, say I, drain has a plug in it.  So...when I saw him on Friday, and he decided to take the drain out, I had to keep from laughing out loud, when all that pent-up drainage splashed on his $$$ suit - serves him right - you should always listen to your patients!

    So, the good news is sentinal node negative (3 removed, all negative) .  Got the HERS back and is +,which the onc did not expect - apparently if you are ER+, there is a better than 90% chance that you will be HERS2 - .  Ah well, nothing has gone according to the book with me anyway.

    Now I have a decision to make.  The MRI of both breasts last week were negative - nothing showed until the path report from the mastectomy...now there are 2 pages of cancer from that breast - many sites of DCIS, may sites of "microinvasive cancer" in multiple quadrents of the breast.  Now, do I keep my one boob and not have a reliable screening tool for it, or do I prophylactically do the mastectomy on the other side . That is what I am leaning toward today.  Meeting with the surgeon tomorrow afternoon, so any input would be appreciated.

     Am going to try to get some drug-induced sleep now, since I had my port put in today.

    Goodnight all

    Geri

    .

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