New here.. waiting for biopsy results

Options
13

Comments

  • ek25
    ek25 Member Posts: 53
    edited April 2012

    Hi Ladies,

    Thanks to everyone for their kind words.  Once my head stopped spinning, I think I'm starting to get a grip on my new reality.  AKmom - now that I've received a copy of my path report, it seems you and I have very similar diagnoses.  Mine is DCIS Stage 0, grade 2, ER/PR +.  I think this means all good things.  Today, I spent most of the day researching breast surgeons and feel much better about my options.  I am fortunate to live in a large metropolitan area where my care options will be top notch.  I think I will feel much better when I actually have the opportunity to sit in front of these folks and ask a lot of questions.  Still not sure what my care will be - nurse said probably some combination of a lumpectomy, with possible radiation and possible tamoxifen.

    Trying to become more familiar with my new normal.

    Best to everyone who is still waiting. 

  • akmom
    akmom Member Posts: 272
    edited April 2012

    Hi ek25, yes, it does sound like we are on the same path. My surgeon also mentioned the possibility of radiation treatment before I had my surgery.

    As I mentioned earlier in this thread, what she found was a very small (3mm) area of DCIS, intermediate grade, in one location only. She got margins of 2mm and I am going to have radiation treatments, but she said that in my case Tamoxifen wouldn't make a significant difference to my chances of recurrence.

    It is shocking and scary to 'beat the odds' in this way, but once you've had a chance to get used to the idea, and ask questions, and realize that the treatment for DCIS is very effective, you will feel more settled. So far the hardest thing for me has been making decisions about who to tell, and when. I haven't told my daughters, sisters or mom and I still can't decide if or when to share this news.

    I hope you have lots of emotional support and are able to come to terms with your diagnosis. Keep asking questions and as everyone here will tell you, with DCIS there is no great urgency to make treatment decisions right away, so you have time to do the research that will help inform those decisions.

    I wish you all the best - take care of yourself.

  • ek25
    ek25 Member Posts: 53
    edited April 2012

    Akmom - Thanks so much for your kind words.  I can't begin to tell you what a difference it makes to have women either several or many steps ahead of me as I waddle through this process. It really does give me great strength.  My DCIS is apparently very estrogen receptive, which I guess is a good thing, so I'm not sure what they'll say about tamoxifen for me.

    I do feel like I dodged a bullet with this, but that's unfortunately little solace as I'm still dealing with a cancer diagnosis. I decided not to tell any of my family (other than my husband) until I got a concrete diagnosis.  I told my sisters and mother and father when I did, but not my kids as they're all aged 8 and under.  I think they are all very frightened for me, but putting up a good front to stay strong.  The less you know about stages, etc., the more scared you feel, so I'm sure they are thinking the worst.  My father is a retired general surgeon who did breast surgery for many years, so he's able to read the pathology report and help me understand it.  He is a 60's era surgeon and has a horrible bedside manner and sugar-coats nothing.  He has been very reassuring in this diagnosis, routinely refering to this as "pre-cancer".  

    I am very fortunate to live in the Bay Area of California where I have my pick of great surgeons. Most of these guys can't even see me for another month, but I'm focusing on Stanford and UCSF, which both have great facilities, surgeons and novel approaches to treatment.  I plan to ask tons of questions and continue to be well-informed.

    Thank you again for your support.  I wish us both a calm outlook and long, happy lives.

    EK 

  • Lin1108
    Lin1108 Member Posts: 12
    edited April 2012

    Hello girls,

    Hope everyone had a good weekend. We had a lot of family time, very enjoyable. Has GREAT news at work on Thursday - I applied for a classroom set of 25 iPads & I got them. Very exciting for my students!



    Also found out Thursday that insurance denied my MRI. However, this was because they want mammo & us to be inconclusive first. Got a letter in the mail Sat stating that those tests did not show any problems. Calling dr tomorrow to get copies of reports. Since my lump did not show on these tests, we can now press for MRI. FRUSTRATING! I find it very sad that insurance companies decide on what a patient needs rather than drs.



    I will push for MRI, though. I cannot wait like this for 6 months & recheck. I might feel differently if the mass could be seen & examined visually, but we know virtually nothing except that it is there. I just feel that we need to know more.



    Hope you all have a good start to your week & that appointments & procedures go well.

  • Nightnurse
    Nightnurse Member Posts: 86
    edited April 2012

    I saw my surgeon Friday and this is my updated diagnosis: rt breast IDC, grade 3, approx 1.5cm, ER+/PR+, HER2-, positive for lymphatic invasion,  DNA aneuploid with lg amt in S-phase, also DCIS, and other area of microcalcifications in another part of the  breast that will be biopsied during surgery, staging unknown yet, node status unknown yet. 

    I will be having a bone scan, MRI chest , abdomen, and pelvis, CXR, CT, and possible PET scan this week.  And I will see the plastic surgeon as well.  Since my biopsy was 3 weeks ago, the surgeon said we would have to start the chemo within 6 weeks of the biopsy.  Does that sound right?  He is recommending surgery, chemo, tamoxifen or another hormone therapy pill, and possibly radiation depending on what the scans/nodes show.  What do ya'll think?  Is there anything else I need to address? 

  • sparkynfiesty
    sparkynfiesty Member Posts: 29
    edited April 2012

    Hey everyone.  I tried to focus on the holiday this weekend and not think about the unknown but it's now right back in the forefront of my mind.  I was supposed to see the doctor today to discuss an excisional biopsy but they called and canceled the appoinment.  Apparently they are sending all of my tests to an "expert in the field" to have them reanalized.  Talk about dragging me around by my bra straps here.  I'm supposed to hear back wednesday or thursday to reschedule, hopefully then I'll have some real answers.

     Ek, I'm glad your dad was able to offer you some reassurance.  Sounds like you have a lot of treatment options as well.   Sending lots of positive thoughts your way as you tackle this journey.

     Lin,  That is amazing news for your classroom, so happy for you and your students!  I can't believe your insurance denied the mri, well I guess I can believe it but it's so wrong!  I hope you can get it appealed and get some peace of mind soon.

    Nightnurse, Sounds like you have things well underway.  I'm glad they are getting you in quickly and not dragging things out.  I hope the rest of your tests come back clear, please keep us updated, you're in my thoughts!

  • Nightnurse
    Nightnurse Member Posts: 86
    edited April 2012

    I had a bone scan, CT chest, abdomen and pelvis today and saw the plastic surgeon.  All the scans were clear (YAY!!) Now all that has to be cleared is lymph nodes during surgery.  Chemo after surgery. Surgery will be a double mastectomy, skin-sparing with immediate reconstruction with an expander.  I am so fortunate to have my boyfriend.   He is taking care of me just like I would take care of him.  He is my rope.....and I'm hanging on.  My surgery will be the week of the 23rd.  I'll find out tomorrow.  I hope there is good news to go around for all.  Peace.

  • teeballmom
    teeballmom Member Posts: 322
    edited April 2012

    Hi!  I'm 46 years old.  I've been reading the boards for the last several days and am so glad I found this forum.  I had a biopsy yesterday morning and the radiologist will be calling me today between 4pm and 5pm with the results.  I'm terrified!  I had pain in my right breast over the summer with a lump and had a mammogram.  My doctor at the time wouldn't order a diagnostic and the mammogram came back with a Birad 2.  At that point my doctor said everything is fine and see you in a year.  I was still concerned and since my Oct 2011 mammogram I've had 2 thermogographies performed (the 1st in Nov 2011 and the 2nd in mid-March 2011).  The thermographer was adamant both times that there is no cancer and I'm fibrous; however, she said that the lump on my right breast was huge and hard.  My gut feeling told me to get it checked out right away.  I found a new doctor who saw me (in a larger city about an 1 1/2 hours from my home) and immedicately made my appt for me for this past Tuesday for a diagnostic mammogram and ultrasound.  After the tests, the radiologist said that my lump had grown since October by 1 inch and had the characteristics of malignancy.  My world just collapsed.  She said we need to get you biopsied and she would do it that moment for me if I could.  I wasn't able to since I had to pick up our 6 and 4 year old boys but went in yesterday.  During the biopsy (ultrasound guided core biopsy) the Radiologist checked my lymph nodes and said they are fine.  Anyway, my doctor contacted me before my biopsy and scheduled me to come in to see her this Friday because she wants to go over the results she has in her hands and get me scheduled with a breast surgeon right away.  (She is so great and even wants me to bring our 2 boys with me if that's how she can get me in that day).  She feels (and I agree) that we need the lump removed because of its size and the fact that it grew.  It just seems like everything is moving so quickly (which I'm thankful for).  I can't sleep more than a few hours a night, have bouts of crying spells and it's so hard to keep everything together with our boys home on Easter vacation.  They keep asking me if I'm o.k. after my big shots yesterday, and it makes me want to break down again because I love them so much and we waited so long to adopt them.  I just want to watch them grow up and be the best mom that I can for them. My husband is so terrific but so lost because he doesn't know how to help me feel better but holding my hand for me helps me more than I can tell him.  This will probably be one of the longest days for me.

  • sparkynfiesty
    sparkynfiesty Member Posts: 29
    edited April 2012

    How fantastic that the rest of the scans came back clear!!! I'm so so happy for you!  Sounds like everything else is moving along very quickly, in a way I'm sure that's a huge relief but I'm also sure it feels like a ton to take in all at once.  I'm glad your boyfriend is there supporting you.

     Still no news for me.  They were supposed to call late yesterday or early today to reschedule me but no one called.  When I tried to call the office I just got their machine.  In the meantime it still hurts and I'm pretty sure it's getting bigger.  At first I thought it was just the swelling from the biopsy but that should have all resolved by now.  I'm getting very impatient!

  • Lin1108
    Lin1108 Member Posts: 12
    edited April 2012

    Great news Nightnurse! Hoping surgery goes well!



    Sparky, that sucks! I sure hope you get rescheduled soon. How awful to keep waiting.



    I'm still waiting too. After more than a week, finally got the reports from mammo & us. Mammo shows dense breasts. Us showed mild duct ectasia & 3mm cyst. The lump is larger than that. Recommended to repeat mammo in 6 months (why? It showed nothing). Dr has sent paperwork yesterday to insurance to hopefully approve MRI, as lump doesn't seem to be showing up. Really hope we won't have to fight any more on this : (

  • sparkynfiesty
    sparkynfiesty Member Posts: 29
    edited April 2012

    Hey girls.. just thought I'd pop in and update.   I finally have a follow up appointment for thursday afternoon.  I still know nothing other than the BS and expert radiologist were messaging back and forth discussing my case?  So much for the simple cut and dry they made it sound to be at first.  I'm not sure if they are still thinking excisional biopsy or if they found anything different.  I keep trying to put it out of my mind and not panic that an expert had to be called in to review it... just thorough and a good precaution right, not necessarily a sign of bad news?

    Lin, how are things going with the insurance? Thinking of you!!

    Nightnurse... thinking of you as your surgery approaches.  Hope it goes well.

  • rocklizard
    rocklizard Member Posts: 45
    edited April 2012

    Nightnurse, wow, once you get a diagnosis they really get going.  I can't believe how fast it's going for you.  You sound like you're coping well.  I, too, will be thinking about you.  Take care.

  • Nightnurse
    Nightnurse Member Posts: 86
    edited April 2012

    Rocklizard:  It is feast or famine in this business!!  Either you get no info or so much you can't choke it down!!  I would rather have too much, though, personally.  I keep telling myself that I can't see any benefit to myself by being negative.  I I truly have SO much to live for and I won't give up without a fight.  We joined this site about the same time.  I am so glad for you that your news has been good.  But even a scare like that changes you in some ways.  Am I right?  That safe feeling that nothing could happen to you is gone.  That peace of mind.  I find that I always wonder what is lurking around the corner next.....But things could be so much worse for me than they are so I shouldn't complain.  I just want to have this all in progress and hopefully put it behind me at some point.  Thank you for your response!!!   TTYL!

  • Nightnurse
    Nightnurse Member Posts: 86
    edited April 2012

    I'm getting down to the wire.  Surgery is Wed the 25th.  Tomorrow night is my last night at work before I'm off for almost 4 weeks.  I will be moving to a new type of nursing when I come back so that I won't be working with so much infectious stuff while doing chemo.  I am just relieved to have some time off.  Has anyone out there shaved their head before they even started chemo?  I'm thinking about doing that. 

  • Nightnurse
    Nightnurse Member Posts: 86
    edited April 2012

    Sparky and Lin1108:   I am really enjoying the camaderie and just the "not feeling so alone" every time I see your responses!!!   The feeling of "we are all in this together"  is very nice. I'll be back!!!

  • rocklizard
    rocklizard Member Posts: 45
    edited April 2012

    Nightnurse, the don't give up attitude is great.  Fight, fight, fight.  You are a wonderful person and you deserve to be here and be healthy!  Remember that!  I'm glad things are moving for you.  I don't read the other threads much, but what I've seen is that people seem to do better once things are going.  Not great all the time, but better than right after the news.  Surgery on the 25th is great, and I'm glad you got the time off you needed and will be working in a different ward.  And this board has so many great women on it, at all stages in their path, and so willing to share and be there for each other.  And they know so much.  They've done their research and have the experience. 

    Where I live, there is also a group that pairs real people together and that was great for me.  I enjoy the boards, but phone calls and visits were another facet for me and they helped as well. 

    You are right about being forever changed by this experience.  I have had health scares before, but then I've always been a bit of a hypochondriac.  20 years ago when I had a lump I went out of my mind, had my Mom come to the doctor with me, and when I got there the lump  was gone.  Another time I convinced myself I had aids and had the test done.  This was at the time when an aids diagnosis was a death sentence. 

    Even so, this experience has been different.  I have had more support and have had to handle it longer and I had more medical evidence that this could be a big problem.  I have rethought my approach to life and have made some changes (or are making, as they take time).  I am more aware of what is really important in my life and I am working on living more authentically to that.  

    I will keep you in my thoughts as the 25th approaches.  Please let us know how you are doing. 

  • rocklizard
    rocklizard Member Posts: 45
    edited April 2012

    Nightnurse, I just read your profile.  My husband is a runner (first marathon last year) and bicyclist.  He loves it!

  • sparkynfiesty
    sparkynfiesty Member Posts: 29
    edited April 2012

    Nightnurse, I couldn't agree more.. it's so nice knowing there are others out there going through this with me.  I'm so glad you are getting time off and will be on a better floor to work with chemo.  If I were facing chemo right now I'd shave my head in a heartbeat.  I know for me it would be no big deal though.  I used to shave my head in jr high and high school because well it was easy to maintain and no one else was doing it. To be that carefree again! LOL

    I finally had my appt with the breast surgeon today.  They are scheduling me to consult with a plastic surgeon and then we will go to surgery.  The mass is over 5 cm which means it consumes over a third of my breast.  Hopefully the PS will be able to reconstruct with what is left, if not it will be a mx instead of lumpectomy.  Even after all the expert analization they said there is no way to know for sure it is free of cancer until its out because the entire mass is riddled with calcifications and lit up in the MRI.  I'm nervous about having it done and sad because these boobs fed my babies, I counted on them for a long time.  On the other hand I know I'll have no peace until I know the whole thing is clear.

  • Nightnurse
    Nightnurse Member Posts: 86
    edited May 2012

    Sparkynfiesty:   I felt the same way about my boobs. I fed 3 children with them and , even though they weren't perfect, they were mine and I was used to them.  I miss them even now.  And the mangled mess that I am left with right now (TE's are in now) depresses me.  I can't imagine how younger women than I , especially the single ones,  manage it.  I am just hoping that the final boobs are better than what I have now.  Will they be checking your nodes during the surgery?  I knew they were doing a sentinel node biopsy on me but I wish now that I had waited on reconstruction with TE's until node status was confirmed.  Now I need rads and will have to have the TE's removed first because they have the metal fill port.  Something to think about.  Good luck with surgery.  I wish I had been able to read every post on this website before I had anything done !!  I'll be sending warm fuzzies your way!!

  • Nightnurse
    Nightnurse Member Posts: 86
    edited May 2012

    Rocklizard:  My boyfriend loves cycling and he is good at it. I  am the jack of all sports, master of none!!  Actually, I prefer running but I am better at cycling so that is why I do duathlons. run-bike-run.  I am trying to get faster running so I don't have to just hope everybody at each race is a slow cyclist!  I would love to start half marathons this summer and try a marathon next spring. 

  • Sparkysbrat
    Sparkysbrat Member Posts: 200
    edited May 2012

    Hi all. Just wanted to say hello and wish you guys all the best. I am going in for my biopsy on monday the 14th at 130. Cant wait to get this overwith so at least I know what I am doing.

  • Lin1108
    Lin1108 Member Posts: 12
    edited May 2012

    Hello, girls. Nightnurse, so glad you get time off & a switch in jobs to make things a bit easier. I hope you are recovering well. I'll bet those new boobs will be beautiful : )



    Sparky, I am praying your surgery went well today, that you are recovering ok, & that you will get good results. Let us know.



    As for myself, I've been very busy this last month or so as school winds down - and insurance has continued to deny my MRI. I am appealing the denial, & should hear from my dr tomorrow on how she wants to proceed. The nurse feels she may want to go ahead & do a biopsy, but the mass isn't showing on mammo or US, so not sure how that would work? Anyway, hopefully more info tomorrow. And still I wait...

  • cspiritl
    cspiritl Member Posts: 24
    edited May 2012

    Had my biopsy today, I get my results on Wednesday! Has been over a month sense this all began with my yearly Mamo. I will be glad to finally have a answer. Wishing you all the very best!

  • janisID
    janisID Member Posts: 8
    edited May 2012

    Hello!  I have been reading alot here and I feel not so alone now so I decided to post.  I had a mammogram, ultrasound and a core needle biopsy.

     The first words from the nurse were papilloma and then from my NP atypical cells, worrisome around the site and that I should have surgery to remove it.  The surgeon said that if you look at a spectrum like a rainbow I am probably on the benign side of the spectrum but with only three samples from the core needle biopsy they don't really know what else could be there.

     Had anyone had this experience and found that there is cancer? 

    I have a wire location and excision surgery day after tomorrow.  I keep thinking everything is simple and OK but inside I am worried to the max.  I just want to be ready for anything!  The surgeon said that if I am closer to the other side of the spectrum sometimes hormone therapy is in order.  My sister had said that some people in my position often have radiation also.

     Any advise would be oh so much appreciated.  Thanks ;)

  • Shayne
    Shayne Member Posts: 1,500
    edited May 2012

    Im surprised they didnt do a breast MRI on you JanisID.  That was the next test after my biopsy.  It gave me peace of mind, even tho it is still not all inclusive test.  The pathology report after surgery will tell all definitively.  But there is still time for you to ask for a breast MRI.  At least it would give you some peace of mind.

    Try not to worry - as impossible as that sounds.  Giving up control - and just accepting that whatever happens, you'll get thru this - was when I started to not feel so anxious and upset about my dx.  Good luck to you and keep us posted!! 

  • marie5890
    marie5890 Member Posts: 3,594
    edited May 2012

    Janis, Hello and welcome.

    There are some conditions out there that are thought to be a pre-curser or a step that can happen before cancer. These conditions come with atypical cells.

    They are known as ADH (Atypical ductual hyperplasia) and ALH ( Atypical lobular hyperplasia). Neither is cancer. But they may (especial ADH) be a step that cells go thru prior to becoming cancer. And I stress *may*...Its not certain if these conditions will always lead to cancer.

    So hang on until you get the results to the biopsy. If they do come back as one of these, it may very well be that an MRI will be order to see what else may be there. MRI's tend not to be done until after the pathology on a biopsy is done.  

  • janisID
    janisID Member Posts: 8
    edited May 2012

    So an MRI can show more than the actual excision, mammogram, ultrasound and needle core biopsy?

    If so why don't they do that first?

  • marie5890
    marie5890 Member Posts: 3,594
    edited May 2012

    MRI's can show a lot.

    And they are high when it comes to false positives (ie they can make areas that really arent suspicious look suspicious). And they are VERY expensive, so insurance companies are pretty picky in covering them unless there is good medical need. So they arent dont indesciminately. 

    So they can see more than what an excisional biopsy takes out because they are looking at the full breast(s)...

    Mammos, US and MRI are all just different imagine tools, the pick up different things. None is fool proof, they each have their pros and cons.

    So MRI's tend only to be given (there are exceptions) AFTER cancer has been detected (or ADH, ALH) to see if there is more areas of suspicion that were not picked up by mammo or US. When cancer had been detected, insurance companies will cover MRIs 

  • Shayne
    Shayne Member Posts: 1,500
    edited May 2012

    Exactly - and its an MRI that has the dye......so the cancer cells show up in places like lymphs etc, if they are there that is - but right, nothing it totally fool proof

  • marie5890
    marie5890 Member Posts: 3,594
    edited May 2012

    Ok, Im not sure if the contrast dye used in breast MRI's is to pick up cancer cell per say, or to pick up the vascularization (which I know it does do) of an area, or both. Cancer cells can only be truly seen under a microscope. 

    With an MRI, the dye shows what is known as "enhancement" but also show the "take up and washing out" of an area (ie the blood flow, I dont know the technical name off hand. ) 

Categories