Am I missing something?

2

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  • fairy49
    fairy49 Member Posts: 1,245
    edited December 2008

    Hi Britt, just wanted to wish you all the best for your surgery on Dec 16th.  I was diagnosed on Sept 22nd, I didn't hesitate for a second in deciding to do the bi-lateral mastectomy, my surgeon suggested lumpectomy, but it wasn't an option for me, I have had a nightmare for years, I have never been able to find lumps in my boobs during my monthly self exams, I had 36DD's since I was a teenager, they were very dense, I have had mammograms since I was 35 and for the last 8 years have had ultra sounds every 6 months, they didn't even catch this lump..... in fact in August at my last ultra sound the radiologist said, see you in 6 months and left.  The assistant who was in the room asked me if I had ever had MRI with contrast I said no and she recommended that I request one, (she obviously saw something) I asked my primary care doctor and his response was "she had no right to say that to you", I said well she did so I want one (you really have to be your own advocate don't you!). Long story shorter, did the MRI with contrast and yes I had breast cancer.  I moved very quickly even though I knew I had time, I didn't want to delay, I had the mastecomy with immediate tissue expanders put in place by the plastic surgeon (they work in tandem), I woke up with an A cup big difference from 36DD, but to me they were just boobs and I wanted the cancer out, also I knew I with my boobs I would have to go through all this again next year or the year after if I would have had a lumpectomy, I couldn't do that.  I am quite liking the new little boobs! I am 49 and have NEVER been perky, I am now perky LOL!!  Anyhoo, just wanted to let you know that my prayers with be with you on Dec 16th, you will do great! big hugs! I hope you get your path results soon.

  • webwriter
    webwriter Member Posts: 535
    edited December 2008

    I guess the "missing" thread is probably the best place to post this. (The irony is just beautiful!) My hard drive died last night. I'm using a VERY flimsy spare and don't expect it to live out the day. Dell is shipping another, but it might be a few days before I can get it installed and get the data back in. I'm not really missing, just missing all of you!

    And the wait continues....

    What a day!

    Love,

    Web

  • Britt
    Britt Member Posts: 731
    edited December 2008

    Hi Fairy -

    Thank you so very much for your prayers and good wishes!  Your story is inspiring - we do have to be our own advocates!  AND I finally got the rest of my path results - ER+/PR+ and HER - and passed my pre-op physical today with flying colors - chest x-ray totally clear and blood work normal . . . so I await my appt tomorrow with my surgeon for the breast MRI results to be discussed . . . it has been SOME week!!!!

    Webbie, love your sense of irony - great timing for hard drive to crash!  We all can't wait to hear of your results - great big hugs to you both and to all -

    Maria

  • webwriter
    webwriter Member Posts: 535
    edited December 2008

    I got word at last. The MRI showed nothing we didn't already know about. Surgery is Monday morning. Gulp.

    Now why didn't I think of all these questions when there was time to answer them all?

  • Britt
    Britt Member Posts: 731
    edited December 2008

    Webbie -

    Wow!  That was fast - but at least you will get it over with - and the day before my surgery!  And we were diagnosed on the same day - thank God your MRI did not show any unpleasant surprises - I am freaking because I have my consult at 3pm today re MRI . . . trying to be calm - wish they scheduled the damn consult earlier!  I have all day to ruminate on it - trying to keep busy -

    Hang in there!

  • Analemma
    Analemma Member Posts: 1,622
    edited December 2008

    Webbie,  I'm so glad that your MRI didn't show anything else.  Do the radiation, it's stressful looking at that time away from your family, but it will be over pretty quickly.  You want to go to the best place for rads!

    As for your estrogen receptor, you should hope it's positive, not negative!  Endocrine positive BC is much easier to treat long term, and is not as aggressive nor has as high a recurrence as ER negative. 

    Only five posts per day for newbies?  They must have added that rule because of the trolls.  It wasn't like that when I joined in '05.

    10 more days until Winter Solstice and the days start getting longer.

  • shari1232
    shari1232 Member Posts: 161
    edited December 2008

    All the best to you both, Webbie and Britt!

  • fairy49
    fairy49 Member Posts: 1,245
    edited December 2008

    good luck Webbie and Britt! Keep us posted!

    Lorraine ox

  • Britt
    Britt Member Posts: 731
    edited December 2008

    To All - My Surgery Postponed to After the Holidays 

    Just came back from dr's office.  Breast MRI showed two tiny nodules in my left breast and another tiny one under the lump in my right breast - also showed a "shadow, not a mass or a tumor or a nodule" behind my left rib (I had injured that years ago).  Dr wants to biopsy all the other nodules and have a bone scan done.  I have a bilateral ultrasound tomorrow at Vero Radiology at 7:30 am - and because Medicaid only allows one procedure for day, each biopsy has do to be done on a different day - and the bone scan has to be done at the hospital.  There is no way all of this can be accomplished before Tuesday, so surgery will be reschedule for after the Christmas holidays.
     
    The good news is that none of the tests so far show any invasion of the lymph nodes, which is why dr doubts that the cancer metasized to my rib (the shadow - she asked if I ever had an injury to my left rib, and I did about 12 years ago) - but she wants to do the bone scan to be sure - and the other biopsies to ascertain whether the nodules are benign or malignant.
     
    Should I require a double mast, she agreed with me to schedule a plastic surgeon consult.
     
    So there it is.  I will have a happy Christmas - somewhat, anyway!
     

  • Lisa1964
    Lisa1964 Member Posts: 944
    edited December 2008

    Britt, deciding on the double mast is a very personal decision.  I did it because I never want to go thru this again.  But that does not mean that it is the right choice for everyone.  After you talk to your plastic surgeon, you will be in a better position to make that decision.

    Good luck.

    Lisa

  • ginnysue
    ginnysue Member Posts: 31
    edited December 2008

    Hey Webbie,

    I'm in Birmingham, being treated at Trinity. PM me if you would like to.

    Ginny

  • Britt
    Britt Member Posts: 731
    edited December 2008

    Ultrasound experience today - after my consult with my BS re breast MRI that showed some nodules in the left breast and another nodule in the right, she scheduled a bilateral ultrasound today. The ultrasound took 90 minutes, since the tech could find nothing that was indicated in breast MRI report. Perplexed, she then called in a dr (this was at a radiology place) there to come in and to also do the ultrasound, and the dr could find nothing, either.  The dr did mention that MRIs often show things that turn out to be nothing.  I then asked if biopsies were still going to be done.  The dr said that is up to my BS to make that decision.  Has anyone ever had a similar experience?  I really need to know - thanks.

  • webwriter
    webwriter Member Posts: 535
    edited December 2008

    Thanx for the well wishes ya'll! Ginnysue, I'll certainly drop you a line first chance. The shoulder still wears out quick tho and the HDD has arrived for my poor limping PC. With surgery Monday, I may not get to you for a bit, but would LOVE to hear about your experiences.

    Best to everyone!

    Rock on Ladies! We can DO THIS!

    Love,

    Web

  • Analemma
    Analemma Member Posts: 1,622
    edited December 2008

    I will be thinking of you on Monday, Webbie.

  • webwriter
    webwriter Member Posts: 535
    edited December 2008

    Thank you!!! Here we go!

    See you on the other side.

    Love,

    Webbie

  • webwriter
    webwriter Member Posts: 535
    edited December 2008

    And Wow! We're on the other side, just like that. Brain is a puddle of demerol fog tho, so I'll expand upon that later. Just wanted to let you all know that I'm home, comfy, safe and sound.

    We got clear margins! The preliminary SNB is CLEAR! 

    When the fog clears and those two tid bits sink in, I'm gonna be ready for a wild party! haha!

    Thank you for all the amazing support, advice and friendships. You all are what got me this far with my sanity. You rock!

    Love,

    Web

  • Analemma
    Analemma Member Posts: 1,622
    edited December 2008

    Clear SNB is awesome!!!!

    You won't know hormone status until next week probably.  But clear margins and clear SNB is great news.

  • wahine
    wahine Member Posts: 8,231
    edited December 2008

    Hi Webbie, Just found this thread, and so glad you are home from your surgery! And clear margins---YAY!!!!! Like you and Ginny, I am also in AL, but up north in Huntsville (I'm from Hawaii originally). My bilat mast was in May and exchange surgery the end of Sept., so all I have left are the nips. I am hoping for a quick recovery for you, and continued good news! There are such wonderful ladies here, and good threads for whichever stage of this bc beast we happen to be in. I am so glad you started this thread, and found other amazing gals. Keep supporting each other---that is what got me through this too. I had started out with a horrible surgeon, and the gals here convinced me to go for that 2nd opinion (even just 5 days before scheduled surgery!). Ended up with a great surgeon, and fantastic PS. Just wanted to pop in here and give you all some support....and sending big cyber (((HUGS))) to all of you!

  • Britt
    Britt Member Posts: 731
    edited December 2008

    Webbie -

    Wow!  Clear SNB - fabulous - and clear margins - doubly fabulous!

    Can't wait until you get the homone results - that will give them a much better idea about treatment for you -

    Fabulous again!

  • otter
    otter Member Posts: 6,099
    edited December 2008

    Webbie, I already pm'd you, but here's a shout from east Alabama--YAY!  Whoopee!

    Now, even though you're feeling well enough to post on-line, be sure to let everybody around you think you need pampering for awhile.  Sit there in your recliner and whimper, so someone will bring you hot chocolate and cookies and pain relievers and a good book to read (in between naps).

    Hugs...

    otter 

  • fairy49
    fairy49 Member Posts: 1,245
    edited December 2008

    Hi Webbie!

    Yay!!!! What fantastic news! take is easy and enjoy being pampered! :)

    Lorraine

    ox

  • bee5467
    bee5467 Member Posts: 112
    edited December 2008

    Webbie - WHEW!!!!!! Looking good so far, sister.  Keeping everything I've got crossed for you!   

  • webwriter
    webwriter Member Posts: 535
    edited December 2008

    Thanx ya'll. Looks like I have to take back the best of the news tho. Doc just called. The lab found a tiny spot on one of the nodes. We go back in Thursday morning for round two. Damn.

  • otter
    otter Member Posts: 6,099
    edited December 2008

    Aw, rats, Webbie.  (I'm sure you're thinking of more appropriate words than "rats" for this situation.)

    At least they're moving on to Surgery #2 pretty quickly.

    So sorry this happened.  Heck--so sorry the whole thing is happening.  Big hugs...

    otter 

  • webwriter
    webwriter Member Posts: 535
    edited December 2008

    Thanx ya'll. I appreciate it. And for no one else would I have gotten my sorry self outta bed tonite. haha! This one hurts quite a lot more than the other one. Can't seem to stay ahead of the pain this time. But, once again, they all LOOK clear. We'll see if that holds tomorrow. The rest of the path should be back tomorrow too.

    Question on Oncotype: I read last night that studies show it's as accurate a predictor for microscopic invasion as no node. BS didn't want to order one since chemo is mandatory now. I'm insisting anyway. While it won't help me make a chemo decision, there might be others that it could be useful to know. Right move or wrong one?

  • otter
    otter Member Posts: 6,099
    edited December 2008

    Webbie, your BS may be hesitating because some insurance companies won't pay for the Oncotype test if there was a positive node.  Debates have raged over whether a micromet constitutes a positive node.

    Genomic Health has been working on getting approval for Oncotype testing in women with positive nodes.  I don't know where they are with that project, or whether any insurance companies have bought into it yet.

    The standard cost for Oncotype testing is around $3,500; insurance companies that routinely cover the test generally pay a bit less.

    I hope they gave you something for pain--Percocet?  Something stronger?  I just had a SNB with my mast, but I've heard that ALND hurts worse than a mast.

    Hugs...

    otter 

  • carpediemocc
    carpediemocc Member Posts: 53
    edited December 2008

    Sorry, but what is SNB &  ALND

  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited December 2008

    SNB = Sentinel Node Biopsy - doctors trace the first layer of lymph node(s), then remove.

    ALND=Axial Lymph Node Dissection - usually means that something was found in the first layer of lymph nodes, and the rest are taken and checked.

  • otter
    otter Member Posts: 6,099
    edited December 2008

    Just wanted to expand on something Sue (ICanDoThis) said...

    When tumor cells escape from a tumor and get into the lymphatic system, they usually go first to axillary (armpit) lymph nodes.  The first lymph node to receive fluid and cells from a particular area of the breast is called the "sentinel node" for that area.

    Thus, with a SNB (sentinel node biopsy), the surgeon uses tracer dyes (a radioactive compound or a blue dye or both) to identify the node or nodes that are the first ones to which the tumor cells would travel if they escaped from the breast.  My surgeon said she usually finds and removes 2 or 3 sentinel nodes--not just one.  From what I've read, that's pretty typical.  So, the surgeon isn't removing a "layer" of nodes with SNB--he or she just removes the first few (or even just one) marked by the tracer dye.

    With ALND ("full" axillary lymph node dissection), the surgeon attempts to remove all the lymph nodes that are under the arm.  The axillary nodes are buried in a layer of fat that's in the armpit, and the surgeon often takes out the entire fat pad plus whatever other nodes he or she can locate in the area.

    Sue is right--if one or more of the sentinel nodes contains cancer cells, the surgeon will usually do a full ALND to see if the cancer has spread beyond the sentinel nodes.  Sometimes it's necessary to do ALND instead of SNB--for instance, if there is clinical evidence that the cancer has already spread to the nodes; or if the tracer dye for the SNB is injected but no lymph nodes pick up the dye.

    Webbie, how are you doing?

    otter 

  • webwriter
    webwriter Member Posts: 535
    edited December 2008

    Thanx for the clarification Otter. Just the kind of explanations us newbies need right off the bat. I'm just one of the unlucky ones where the first two nodes looked clear during surgery. Full dissection later resulted in the call back to have the full removal done. I had both the radioactive compound and the blue dye for the SNB surgery. For the ALND surgery, it wasn't needed. I was, however, still peeing blue by then! That stuff is truly and utterly awful.

    The ALND is taking MUCH longer to recover from. I'm not sure if it's because these surgeries were so close together or whether ALND is normally this much harder than SNB w/ Lump. I was given meprogan fortis 25's/4 hours for the shoulder. They just renewed it for the SNB/L and I was fine. By the time the ALND arrived, I wasn't taking them more than once a day anymore. I've been on a tight 3 hour schedule ever since then tho. Up until today it wasn't keeping up. I'm in awe at the magnitide of difference.

    However, I'm out of bed today & trying to work out a way to grab a shower. It appears that I am going to survive it. No word on the path yet. I have an appointment for follow up and drain removal on Tuesday. My guess is I won't hear anything till then. Am I thinking right in that this is also when I will get an Oncologist?

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