multifocal cancer

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  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited November 2011

    Multifocal/Multicentric Sisters -

    Thanks for good wishes for surgery.  I'm 4 days post-op, at home and feeling better.   

    A SNB was done before surgery and three nodes were clear.  Final path results will be in this week and I'm nervous for results, but really grateful that the surgery is over.  

    Pre-surgery, BS said that I have 2 masses combined with DCIS.  I thought that DCIS progressed into IDC, so that wouldn't be too unusual, would it?   I will share whatever I learn.   

    Good wishes and healing to all ~

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited November 2011

    I am glad you are feeling better and I am glad your nodes are clear.  That has to be a relief! 

    I have to say my report said I had LCIS- which made me think I should have a mx for both becuase Lobular goes to both breasts, and the doc said it is not considered out and out cancer!  I don't quite know what that means to this day! 

    Good wishes to you and thanks for keeping in touch!

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited November 2011

    jrgolomb

    I had heard the same about LCIS not really being a cancer, and had originally thought that's what I had.  Much of this is confusing, and asking doesn't always answer the question.  Pretty frustrating - 

    My final path report was clear - I am so relieved.  I'll see the BS on Friday, and hopefully - fingers crossed - will get some if not all drains out.  

    I'm so thankful for my diagnosis, but so sad for other BC Sisters fighting the battle.  And I'm feeling guilty that I will come out this relatively unscathed - although with a big reminder right in front of me that I will carry around with me forever.   Still trying to find a new normal.

    Hugs and good wishes to you ~

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited November 2011

    I know what you mean about BC sisters and brothers fighting the battle.  It would be nice to find a cure, a vaccine and better, easier ways to treat this horrible disease. 

    Good luck and keep in touch!

    I remember being totally happy to get those drains out!  Whahoo!

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited November 2011

    From path report, looks like I'm multifocal and multicentric.  Two masses in two different quadrants of one breast, masses both had combination IDC and DCIS.  

     I'm worried about a recent Her-2 positive path report - have heard that triple negative isn't good, but didn't realize that positive Her-2 usually means chemo and Herceptin.  I was told that I most likely wouldn't need further treatment. 

     jrgolomb   one drain out, 2 to go.  Hopefully Monday is the day.  And you're right - there are BC brothers out there too.  

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited November 2011

    I'll be thinkin of you Joy-- I was so happy when they took the drain out!  Well, tomorrow is my six month check up.  I hope all goes well!

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited November 2011

    Final 2 drains out!!  Thirteen days with those grenades - what a relief to get them out.  

    Hope that everything goes well with your check up, jrgolomb.   

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited November 2011

    Yay!!!!  That has to be a super relief!!!!!!!!   I remember going out to dinner after that.  Plus, I did work with them hanging on my side.  At home, I let the drains rest in the pockets of my sweats.  I know....I was probably crazy to do that, but I had to maintain the status quo for my family.  I am the bread winner for the house and I just couldn't stop.  I am forever grateful to this website for the communication amongst those who helped me to maintain........

    Yes, my check up went fine.  My red blood counts are a bit low- have been for about a year.  That is a bit concerning to me.  I will look up what I should do, if I can do, about that.  Other than that, I am going to grab my friend named "NED" and dance with him during my next staff meeting.

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited November 2011

    jrgolomb

    Woohoo - best news!  So happy for you and NED!  Hope you figure out the RBC's - maybe that's a common response with all of this?  

    This website has been a Godsend for me.  I'm so lucky to have supportive family and friends, but they will never know what's really going on.  My mother said to me yesterday  "once your bruising from surgery goes away, you should no longer be in any pain".  Yeah - right.  I don't have a response for that, and don't have the heart to tell her that I will always hurt, emotionally or physically.  

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited November 2011

    I exactly know what you mean about family and support.  My family was so in denial and didn't help at all.  They would try to support me with similar comments like your mom.  Nice, but no exactly what I needed to hear.  This website is wonderful for me.  I used to spend hours on here.  I usually log on about once a week. 

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited December 2011

    Hello Multifocal Sisters - 

    I realize that this post isn't too active, but here goes -    

    Today I am 4 weeks out from BMX, and feeling good.  Path reports are still not complete which is very frustrating.  What I notice is that any plans for treatment are based on the pathology of the bigger tumor only.  I had 2 masses - 1.8cm and 1.6cm.  From what I understand, each mass has its own characteristics - why isn't pathology from both be considered for treatment?  

    I have a great oncologist but won't see her again for another month.   

    Thanks - 

    Joy 

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited December 2011

    Yeah, I wish we would hear from more multifocal folk!  ( tongue twister!) I wonder how many grade 1 multifocal peopl are out there!  So, I hope to hear from you again,  Joy.  I feel exactly the same why you do about the tx for each of the separate tumors as tumors all added up into one?  I don't understand it to this day except to say I was tx aggressively---maybe I am wrong in thinking it was because of the 5 tumors in my breast but the type of largest tumor - IDC.  Dunno

    keep in touch

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited December 2011

    So here's the latest - an oncotype dx was done on the smaller 1.6 cm tumor - the lesser aggressive, from what I understand, of the two tumors that I had.  Why that tumor was chosen to perform the oncotype dx on, I have no idea.   The larger tumor, 1.8 cm, has been in question because of an initial Her-2 positive result.   FISH was done on both tumors, both came out negative.   FISH report suggests that the larger tumor has polysomy 17 - maybe a reason why initially it came out positive for Her-2.  From what I read, this doesn't necessarily make this tumor Her-2positive, the negative result should hopefully still remain, especially with Grade 1. 

    Long story short - an oncotype dx is now being done on the larger tumor - IMO, what should have been done in the first place.   I suspect that if the larger tumor had been tested first, the second smaller one may not have been oncotype dx'd at all.  So it seems that both masses will be considered for treatment.  It's just being done in a very slow and tortuous manner.   

    Hope this makes sense - whew.  I feel better just typing it out.   

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited December 2011

    I wish someone could explain the reasoning.  I am sure someone has tried before, but I don't quite believe it.....I especially feel that way because I ended up with a positive node......

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited December 2011

    jrgolomb   In my case, I think that somebody reached in the cryo vat, or whatever they store all of bio samples in, and blindly chose one of the two vials with my name on it.  It just happened to be the one sample without the polysomy 17 result.  I'm not a pathologist, but it seems that this tumor is the one that is more in question and thought to be more aggressive.   And of course my insurance company wants to deny the oncotype dx on the second tumor.   

    Do you have questions about your positive node?  

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited December 2011

    Well--- my tx consisted of 3 doses of taxotere and 3 doses of FEC. My oncologist told me it was an aggressive tx in spite of the grade 1 status of the IDC because of the positive node.    Yet I am considered stage 2- not stage 3 even though I had 5 tumors in my breast.    Maybe I should conduct a little bc.org survey on what is considered aggressive tx and correlate it with the type of treatment others have.    ....So why do the docs just look at the largest tumor for staging when there is a positive node?  I guess in the end it doesn't matter unless I should have truly been treated as if I was stage 3. I guess I hope I did everything possible to fend off recurrence and or metastases.....

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited December 2011

    So less than 2cm - one positive node, grade 1 - clear margins?  means Stage 2?  I'm no chemo expert - but I wonder about that too.

    My oncologist was listing just the larger tumor for treatment, completely ignoring the smaller.  They were not much different in size, 1.8cm and 1.6cm.  My BS said that because some of the further testings (like oncotype dx) are so expensive, one tumor is tested.   So it looks like pathology is done from all tumors after surgery, and then the largest is selected if other testing is done, for the most part.  My onc has a good geneticist that has the time to talk - I'll ask her.  

    I asked if all tumors were added together, and then staged from the sum of everything.  BS said no.   

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited December 2011

    Hm....well, each tumor was described on my results sheet and all were considered grade 1.  I asked about the tumors being added togetther and got the no as well.  I guess I don't understand why not....perhaps they are so because their encapsulated?  I don't know!

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited December 2011

    That does seem strange - it's all cancer and what's the difference if they're separated?  I'm glad it's that way, though, because treatment for me would be different if it were the sum of the masses.  Not that I want to avoid treatment if it's needed.  Have you done Tamoxifen, or an AI?  It looks like I will be starting Tamoxi in January, kind of scared about the SE's. 

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited December 2011

    They're enscapulated.....oops

    I am taking tamoxifen and start femara in a week.  I experienced joint stiffness, hot flashes and weight gain.  I have been on tamoxifen for 2.5 years and will finish with femara--doc said femara has been shown to more effectively rid my body of the estrogen, and beause of the er/pr+ status, I need to get rid of it !  I was told I may feel miserable on femara and should stick with it for a month, and please don't panic if I gain more weight!Foot in mouth 

  • kira1234
    kira1234 Member Posts: 3,091
    edited December 2011

    jrgolomb, I've been on Femara for a year now. I didn't take tamixifen, so can't compare it, but will say I'm doing fairly well with it. Some hot flashes and aches and pains, but no where bad enough to go off the stuff. There is an active Femara thread you might want to check out.

  • GILMOURGIRL
    GILMOURGIRL Member Posts: 7
    edited December 2011

    MY sister was dx with dcis 12 years ago. it was picked up as calcifications on her mammogram.

    they did an excisional biopsy and didnt get clear borders and did another one...still no clear margins..it turned out to be multi focal..which the docs said is sort of spots all over...like throwing salt on a table for an example. so she underwent a mastectomy and nodes that were benign. and no radiation or chemo. but she did take tamoxifen for 5 years.

    so far she is doing ok..we had a recent scare of two things lit up on her recent mri..one enlarged lymph node and one breast nodule....both turned out benign..nodule was a fibroadenoma andl lymph gland was "reactive" probably due to infection or virus.

    hope this helps.

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited December 2011

    That does help.  It is nice to know we are basically treated the same.....

  • LuvLulu07
    LuvLulu07 Member Posts: 778
    edited December 2011

    My onc has tested for metabolism of Tamoxifen - if that's not an option, I wonder what will be?  I'm pre-menopausal - in reality peri-menopausal, so whether I take the full 5 years of the pre-menopausal drug is a question.  

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited December 2011

    My onc never tested me for metabolism of Tamoxifen.  He said  the test is too iffy- So, he gave it to me and now 2 1/2 years later I start Femara.  Sigh.....more weight gain?

  • Katiep1388
    Katiep1388 Member Posts: 87
    edited January 2012

    Hi ladies so im facing a crazy decision... I rushed into an initial lumpectomy at my local hospital and then a month after a better hospital noticed small areas of multifocal disease right next to my initial tumor.. That later grew during fertility preservation and were reidentified on an mri. My first tumormwas 1.8 and the multifocal tumors are 0.5 cm and smaller... I was told by two surgeons that my only option was mastectomy..but now tthe hospital that found them originally thinks theyncan safely remove the additional tumors with another lumpectomy because they are so close and small.. I already am doing chemo (almost done) AC-T and theynsay my risk is more for distant recurrance then local.. Oncotype score 50 :( hence chemo. No family history or gene mutations.. Im the first at 23 yrs old... What do i do??? I have noooo idea.

  • jrgolomb
    jrgolomb Member Posts: 1,236
    edited January 2012

    My bc surgeon considered that for me for about a split second because mine were small, but to spread about- multicentric I think she said.  Gosh, if they recommend it , go for it.  I mean, it is so much a personal choice!  I considered a double mx, but now am glad I didn't.  I never heard my doctor say distant was more an issue than local.  I hope this helps.... It's tough isn't it???

  • 8cats
    8cats Member Posts: 5
    edited January 2012

    Just signed in ...still learning how to use this page...but can identify w others who have written in! More sources of info the better! My husband has bladder cancer.... very little support info for him! I agree that each person is so different that decisions are extremely difficult & complex. It helps to hear about variations. thnx!

  • Druanne
    Druanne Member Posts: 295
    edited January 2012

    I just had a lumpectomy removing a lesion at the 12 oclock position of my left breast......I was feeling great until I did a recent breast exam.......I am pretty sure I didn't feel this one before and am wondering if it is just a swollen lymph node from my surgery.........it is actually almost right between my breasts but still in the left one.........if you were looking at me it would be the 9 oclock position...........:( I have a doc appointment the 16th.............trying not to worry......never even crossed my mind that I could have more than one.........and I didn't receive an MRI or anything before hand.........

  • Likeachickadee
    Likeachickadee Member Posts: 116
    edited January 2012

    Following my lumpectomy of 1 1/2 wks ago, my BS said the path report showed multiple areas IDC and DCIS and microscopic ADH, DCIS and IDC in the margins, in addition to the IDC and DCIS that was removed during the excisional biopsy a month ago.  He could go in again and re-excise the area, but thought MX was the better option.  I have a post op appt with him later in the week.  I am comfortable with the MX and feel I've tried to save the breast but would now be always worried that something else was in there.

    How do you decide to do a PMX?  I'm considering it, but not committed to removing it "just because".

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