Figuring out what to do (or at least what to expect) next...

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hzzr
hzzr Member Posts: 45
edited June 2014 in Second or Third Breast Cancer

hello everyone! 

Looking for some insight on where I stand and what I should be thinking about in terms of treatment, next steps.

My first breast cancer was in 2005 when I was in my mid 30s - I had a 1.9cm tumor in my LB that was ER+/PR+ and Her2+.  Lumpectomy with clean margins, clear nodes, adjuvant chemo plus rads, Herceptin and 5 years of Tamoxifen.  I 'graduated' from the cancer clinic back to my GP about a year ago, and frankly I had considered myself done with this business!

This spring, however, mammo showed calcifications and core biopsy said DCIS.  I took this too lightly ("stage 0, 'pre cancer', not even testing the nodes - I can handle that!") but my patho report last Wednesday kicked me in the gut a bit.  7.5cm DCIS with microinvasion, 3 margins dirty.  Surgeon is recommending re-excision with a SLNB.  (On a personal note, I was very surprised at how this affected me - spent the day after my doctor's appointment pretty shaken up and am now back to hunting every scrap of info I can about what to expect next.  Won't get caught off guard a second time!)

I know wide excision is the typical choice for DCIS rather than Mx.  But I keep thinking that although my previous Dx has nothing to do with this current Dx, it does play a role here in terms of decision-making.  Should it?  I'm also worried that in this next attempt to get clean margins - will I be disfigured?  Surgeon - same one as now - did a great job the first time around and you can't tell I had surgery on that side.  So I have confidence in his skills but I wonder how much he can take out before it starts to get noticeable?  He removed 9cm already, and the superiour margin had extensive DCIS so we're not even starting with a small margin there.  I'm still a bit swollen from the first surgery (just over 2 weeks ago) so I can't really tell what it'll look like yet.  (And I'm still in some pain too - that normal?  Can't remember how things went with the first lumpectomy in 2005, but I thought I healed pretty quick.  This time the RB is still sore over 2 weeks later...?) 

I'm also trying to prepare for what might come next - I'm told if the margins aren't clean this next time, Mx is the next step.  I'd only do a bilateral, not sure yet about reconstruction.  I had started thinking about this already before the recent Sx - got tested for BRAC1 and 2 and thinking BLM as a good measure but thankfully I was negative.  I also have to consider the possibility of positive nodes but I know the risk is low.

Since last Wednesday's appointment with the path report was a surprise, I'm now bent on arming myself with as much info as I can.  I did that last time especially with the chemo and Herceptin Tx and it really helped.  Dr. Susan Love's book was a bible!  I found this discussion board just last week and have already found it really helpful, and am hoping someone could share their experience and/or knowledge if they have insight here.  The wide excision is booked for mid July so I have time to decide what to do but gotta get the ball rolling soon if we're looking at BLM.

hezzer

5/10/2005 - IDC, 1.9cm, Stage II, Grade 3, 0/11 nodes, ER+/PR+, HER2+
5/31/2013 - 7.5cm DCIS-Mi, Grade 3

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  • bevin
    bevin Member Posts: 1,902
    edited June 2013

    HI Hezzer, I'm so sorry you are facing this again and the added troubles.  I'm not familiar with mastectomy nor a recurrence, but wanted to send my support to you. I know others familiar with this will be along soon. Praying you have a good outcome.

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  • MNSusan
    MNSusan Member Posts: 305
    edited June 2013

    Hi Hezzer!  Welcome to the club no one wants to join.  My story is very similar to yours - DCIS removed via lumpectomy in 2005.  I was very cocky when I pranced into the Breast Center for my mammo last fall.  Surprise!  After a few more enhanced mammos, etc., a biopsy found DCIS again but the area was 6.5cm x 3.5 cm.  

    Having somewhat smallish breasts, I knew that would take most of my breast tissue.  I decided on mastectomy pretty quickly.  My decision was whether to do just one side or both.  After talking to my BS and PS, I decided to do bilateral, mostly for symmetry reasons. I also "didn't want to worry about breast cancer ever again."  Surgery was Nov 7 and a surprise IDC was also found and my prophy breast was filled with ADH.  Left alone, that would most likely end up being cancer as well, so the BMX decision was a good one for me.  I did reconstruction with tissue expanders and implants (just got my implants 3 weeks ago).  It wasn't a picnic by any means, but I trust and like my doctors and had plenty of support at home.

    Because I had an IDC that was 1.1 cm and node negative, my tissue was sent out for MammaPrint testing.  It came back as low risk for recurrence, so no chemo for me.  I feel rather lucky that I "only" had to do surgery.

    I've come to believe there are no guarantees.  Even though I had a BMX, my margins were VERY close.  None of my docs - MO, MS, PS - think I need to do anything more.  I will be incredibly diligent with my exams going forward.  My MO wants to see me for a manual exam and blood work every six months for the next five years.  That sounds just fine with me.

    I wish you the very best going forward.  I've been where you are.  I completely thought I was through with this stuff and here I am again.  I try to find humor everywhere I can and find gratitude to be the best thing to keep my head in a good place.

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  • hzzr
    hzzr Member Posts: 45
    edited June 2013

    bevin, your response was very important to me - thank you!  I was wondering whether someone would answer and was getting a little lonely! LOL

    MNSusan - thank you so much for sharing your experiences.  Really really helpful.  I'm concerned too about the amount of tissue I'll be left with if I have the re-excision, but if it leaves me asymmetrical I believe I could have a reduction on the other side?  Anyone do this before?  I'm in Ontario - I wonder if this would be covered by OHIP if it was performed later rather than now.

    beesie's post about Double Mastectomy vs Lumpectomy was very helpful - read it last night.  Since the local reoccurence and distant disease risks are the same with either Tx, I'm leaning towards the re-excision as a bilateral would be quite the change for me.  Although you've got me thinking due to your experience, MNSusan, of finding the IDC after the mastectomy - that reminds me of how the mammogram didn't see my 1.9cm tumor back in 2005.  We knew it was there by ultrasound but I had mammos done on both sides just as a check, and it didn't show up.  It makes me wonder what might be lurking in either side right now that the mammos aren't picking up.  I know it's due to how the cells change over a lifetime - I'm still under 50 years so my tissue is too 'white' on mammograms.

    I think I have a few questions to get answered before the next time I see the surgeon - which will be in the OR!  Not a great time for a chat :-S  One other question I'm wondering about is what the treatment options are for someone who has had chemo already - in case the SLNB comes up positive.  Again, not worrying about this, but I like to be as informed as I can possibly be.  Surgeon wasn't sure about this and I won't see the oncologist until later in the process.  Anyone out there have this situation?

    I'm sorry that any of us are in this club.  What we are able to do is support each other as best we can, as well as ourselves.  I don't do that last bit as well as I should :-)   Last night I read on this board of how someone has, through her doctor, shown new patients her reconstructions so they'd have an idea of what to expect.  That she'd be willing to do for women she doesn't even know was very moving.  This board has an amazing membership!

    hezzer

    5/10/2005 - IDC, 1.9cm, Stage II, Grade 3, 0/? nodes, ER+/PR+/HER2+
    5/31/2013 - 7.5cm DCIS-Mi, Grade 3

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  • shorfi
    shorfi Member Posts: 791
    edited July 2013

    I'm apologizing in advance because I am not sure where to post this.



    I was diagnosed again with breast again on 6/19/13 with DCIS. I had SNB on June 21,2013 and it was negative...much to my relief. I am now seeing the plastic surgeon on July 9th for consultation and will be scheduled to have a bilateral mastectomy with immediate reconstruction.



    Initially I had just had breast MRI one week prior to all this and an ultrasound, mammogram as well as ultrasound needle core biopsy was ordered. Needless to say I was petrified. When the results came back on the 19th I was a mess. I had already scheduled an appointment with my breast surgeon about having a mastectomy and the results that she gave me in the office only confirmed my decision to go ahead with this surgery.



    I have been so tired of waiting for the other shoe to drop...and it did. I want to experience the freedom from worrying all the time about breast cancer. Of course I realize that it is not 100 percent, but the anxiety from all the scans, mammograms, tumor, follow up doctor appointments leaves me feeling anxious all the time. Mentally I'm tired, but feel like I'm in a good place now because I am going to do this. I have the full support from my wonderful husband and of course my breast surgeon.



    I just needed to vent and also if you ladies have any opinions or suggestions I do welcome them. Thank you in advance.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2013

    hi guys. i just had a mammo monday before last. 2nd one post treatment for right. 1st one post treatment for left. guess what? linnear and branching calcifications on left breast. (So-called "good boob") surgeon rushed me to do a stereotactic biopsy, this monday, which i did, most reluctantly. How did this happen? i was taking arimidex. stopped three weeks ago, due to horrific side effects, with oncs advice. was waiting a couple weeks for   it to flush out before starting tamox, which i really do not want to take either, fibroids etc. I must have blanched when bs told me. i was not concerned about cancer so much as lymphedema. which i already have on my right side. awaiting results. surgeon stomped her foot at me literally and said she was not going to fight me every step of the way on this, this time? i did not think i was fighting, i thought i was just asking questions. do i not get to be an active member of my team? plus, when this all began a year ago, somehow, my mammo that showed cancer seems to have gotten lost. her very own notes said so too, and so she had said that they would do a breast mri, followed in two days with new mammo if they couldnt find them. another place had lost them. but i do have the initial paper from the imaging place, which says i had microcalcifications, left breast. so when bs asked again for mammos, i said if they are so important, why didnt we do them here, again, a year ago. see, they never did. that would have been my baseline. i think she is being defensive, because they dropped that ball. doesnt she work for me? cant i refuse any part of treatment i really  dont want? then she told me that my onc probably gave me the wrong chemo. wtf? if she is trying to scare me into being compliant..... there are so many mistakes made in my records, especially her notes, i really want them cleared up before proceeding, and even tho i really respected her, and she did a marvelous job (attending) at the first surgury,  i really would like to ask for someone else there, if they do find cancer cells. she is making me sound noncompliant noncompliant! noncompliant! because i checked myself out of the other hospital AMA . i had very good reasons for that, and immediately called her and told her why. she did not include my reasons, only that i did. and has inferred that the lymhedema is also my fault! i am fkn pissed, not so scared. i will never see her alone again, i think she has ptsd. or they made a mistake. holy frickin hell. i have to say, after stopping arimidex, i feel more like myself! i was getting extremely mean and cranky, my boyfriend of 15 years has pointed out how sweet i am again.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2013

    i am wondering also, if my boobs are tring to kill me, i want them off. in her notes she stated that (Me) has seen pictures of reconstruction, and would want that. (NOT!) i most emphatically said i would not want that. EVER! the only reason i chose lumpectomy on the other is because i did not think there would be a problem with my good boob so soon. How long after radiation do i have to wait, if i want it off too? i am desparetely pissed. and, at the time of first decision, she told me that she would not do a lumpectomy unless i agreed to radiation. but i did radiation, even though, i knew that if something else happened, it would be hard to heal. i really did not want radiation, but. i. was. compliant. wouldnt, shouldnt that have been my choice to decide? not her? it is my body, and should she just be recommending? Oh my dear God.

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  • hzzr
    hzzr Member Posts: 45
    edited July 2013

    Well, here's an update on me...had the re-excision and SLNB last week. Nodes were negative (yeah!) but so was only 1 of 4 margins (boo).



    Today is my birthday...and I am counting my blessings. I'm thankful my surgeon cared enough to get my test results quickly and to squeeze me in for an appointment before he goes on a long vacation, so I am not stuck waiting to learn my next steps. I am thankful for wonderful bright and sweet friends who keep my head and heart in balance and at peace. I am so grateful to have very caring parents and an aunt and uncle who don't pressure me with their needs, and coworkers who are wonderfully compassionate.



    But I have some choices to make! So much for being 'done with this business' like I thought I was back in February before my last mammo. Not quite!



    Advice and thoughts are more than welcome....

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  • hzzr
    hzzr Member Posts: 45
    edited August 2013

    Hello to anyone that might be listening!  Looks like mastectomy is the recommendation of the day...talked to the rad onco today, and he plus BS plus med onco agree.

    Interestingly, in 1 month we'll have a new plastic surgeon in town with microsurgery skills which means tissue reconstruction, not implant.  Great news for me on that score.

    But I'm a little stunned to be truthful.  I started out quite cavilier about the DCIS Dx in the spring, thinking one surgery then a little rad, then we're done.  Now I'm facing what for me is a big deal surgery.  Huh??  How did this happen?

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