MIDDLE-AGED WOMEN 40-60ish

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  • nfranklin
    nfranklin Member Posts: 119
    edited March 2012

    Hi Everyone, I am a newbie. I am 65 soon to be 66(in June). I was DX on September 9th 2011, faced with too many decisions to make. Found a lump in my breast, I have very dense breast so by the time I noticed it, it was big and had spread to my lymph nodes, my yearly mammogram was due in late September. Took Femara for 4 months, then had a lumpectomy, radiology report came back indicating that not enough clean tissue was taken around the tumor, also 11 out of 26 lymph nodes were infected. On March 19th I had right breast removed. I now have to have radiation treatments and decide whether I want to do chemo before radiation or not, my doctor has indicated that I will get miminal success

    from the chemo because of the type of cancer that I have, I have Invasive Lobular Carcinoma.



    Are there others out there that are going through the same thing and that is post menopausal, that can give me information to help me make some of these decisions?



    God bless all of you. I am doing good mentally, with my Faith in tact and the support from my family and friends and especially my husband who has been a God sent, changing my drainage tube and taking excellent care of me.

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  • YaYa5
    YaYa5 Member Posts: 667
    edited March 2012

    nfranklin, glad you found us, but sorry for the reason.  i'll be 67 in december, so we are similar in age.  i didn't have ILC, though ... i had IDC, so i don't know anything really about ILC.  what was the pathology on your tumor?  it's always helpful if you can put it in your signature on your profile page. there's a forum on bc.org that has a lot of experience and suggestions for ILC.

    http://community.breastcancer.org/forum/71

    good luck with your decisions and on the path of your journey.  we are all aways here for you. 

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2012

    Hi NFranklin- I am not postmeopausal, but getting there, or at least should be. I am 51 and I just had a lumpectomy and there was not a clean marging from any of the specimens. I too have ILC and out of the 4 nodes she took all 4 were positive. I am scheduled, like you had, a BMX on 4/11. I had not heard that chemo didn't have a good outcome with ILC until I read your post about 30 minutes ago. I googled an indeed found that your doctor is telling you the truth based on some of the studies I just quickly read. I will be doing some more research on the subject. I will pm you with the links if I find sites that explain it ( or at least ones we can understand). It sounds like you are in good hands with your family and husband. Sorry to have met you this way, but all these ladies are wonderful, helpful, and quite funny. We all need to laugh

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  • nfranklin
    nfranklin Member Posts: 119
    edited March 2012

    Yaya5: Thank you for the info and I will be checking out the site you mentioned. I also attached my diagnosis to my signature.



    Dianarose: Sorry to hear that you are having to go back, but you are in my prayers for your 4/11 surgery date. Thank you also for the information on chemo, that renews my faith in my doctor, did not lose faith but that put a lot on my mind. I have a very good doctor and he gives me options, but sometimes making up my mind is hard because all of this is new to me. In some cases having options makes it harder to come to a decision. I will also Google and see what I can find out. And yes please PM me with any sites that you find.

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited March 2012
    Welcome, nfranklin!  I am not sure how effective chemo is with ILC, but I do remember reading that ILC is almost always ER+/PR+, and generally should do well on one of the hormone therapies.  Both you and Dianarose may want to try to find the pathology info. that tells the percentage of cells that are ER+/PR+.  If you see ER+/PR+ numbers above 90%, it would make sense that the hormonals could be more effective than chemo. 
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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2012

    HI Elimar- that is exactly what I have been reading. My er and pr are 90%. My MO also said that even if it's in the nodes or somewhere else it is still going to be dependent on estrogen to survive.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2012

    Here is the link to one of the studies which states that they might leave chemo for those who have inoperatable invasive lobular and treat the others with hormonals instead. I also read on a post on this site that they think that lobular is inherited from the father and not the mother. Lobular has a very different makeup than ductal. I have both ductal and lobular, but only the lobular was found it my lymph nodes so I will have to focus on that.

    http://www.news-medical.net/news/2005/01/03/7087.aspx

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2012

    Elimar- would it be possible to somehow put a list of all the abbreviations at the top of this thread for all our new friends and I will admit sometimes I am not sure of all of them.

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited March 2012

    Oh, it was just ILC in the nodes?  I was not clear on that; and then when you said possibly get an Oncotype test, I was thinking it was for the IDC that had spread to the nodes.  But don't the IDC & the ILC have different percentages for ER/PR?  You have a lot going on, but I see why now you thought you may be able to skip chemo if the ILC is the "main" Dx.

    Here's a link to help you out:  Abbreviations for Newbies

    p.s.  I added a helpful header at the top.  Do you like it?  It is not that prominent but my other meaningful symbols need their space.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2012

    Elimar- I just looked at my path report again and all it says on the nodes is metastatic carcinoma. When I asked the MO said it was ILC, but it doesn't state that on the report. Also I had to request them to test the ER/PR on the tissue from the lx. She said, well we would go by what the biopsy said, but the biopsy only had the IDC and the ILC didn't show up until the lx. I am not happy with how the path report is written. It is 8 pages and detailed other than the nodes. They seem to think it doesn't matter, but it does as far a treatment is concerned. If it is IDC in the nodes it would make a big difference in comparison to ILc.

    I have to start drinking the crap for my full body scan in a bit. I tasted it and it's yucky.

    Thanks for the link.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2012

    I do like the helpful header, thanks

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  • barsco1963
    barsco1963 Member Posts: 2,119
    edited March 2012

    Welcome nfranklin - sorry that you have to be here but stick around for great conversation, encouragement, support and lots of laughs!

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  • lisamarie68
    lisamarie68 Member Posts: 1,235
    edited March 2012

    Welcome to all the new ladies .. sorry i havent been here too much , been packing and moving .. and filling up with anxiety ...

    DianaRose , I sure hope things get better for u .. {{{hugs}}}

    u ladies are the best .. and whenever I need a smile i know I can always get it here :)  

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  • Mimi8
    Mimi8 Member Posts: 51
    edited March 2012

    Thank all of you ladies for helping me join this group of brave and helpful souls that nobody wanted to join. I'm so glad I found all of you! The cancer roller coaster took another turn yesterday. Would Binney4 be able to help me make a decision? I've got IDC, Nottingham grade 2, tumor 3cm, SNL found 4 clear nodes, 1 with greater than 200 met cells present. Dr B scheduled me for an axial biopsy of the rest of my nodes. My new oncologist had me take a PET scan which showed no cancer anywhere at this time. Yesterday we went to visit Dr B who floored us by saying that if I wanted, I could elect NOT TO DO THE AXIAL NODE SURGERY! He met with a group of heads of large cancer centers who when told of my case agreed that since I would have chemo either way, the axial would not b necessary based on the Z-11 clinical trial study which showed axial surgery after lumpectomy did no better than just chemo. What should I do? Anybody have this decision?

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  • Mimi8
    Mimi8 Member Posts: 51
    edited March 2012

    I forgot to mention I had a mastectomy of my left breast instead of a lumpectomy. There would have been very little breast tissue left anyway. Knowing what I know now, I would have had a bi-lateral prophylactic mastectomy! Btw, my surgeon also said that the doctors thought that in the future, we would have much less surgery and be using more drugs to fight breast cancer.

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited March 2012

    Welcome, Mimi8!  I hope I am understanding all of your information.  The new trend is not to remove the nodes, but let the chemo do the work, like you have said.  However, there are women who get LE just from the damage to lymph vessels from just surgery and/or rads.  So not having the nodes out is no guarantee. 

    The mastectomy, and just the tiny bit of breast tissue left behind, reduces your chance for LOCAL recurrence to about 2%.  That has nothing to do with what may be happening in the nodes or elsewhere.  Again, we have to rely on chemo or hormonals for that.  With only one node having cancer in it, you would like to think it did it's job and stopped the spread from going further in the body, and maybe it has.  No way to know for sure though.  When the docs allow patient choice, like yours has, it really comes down to which choice you will be most comfortable with.

    If Binney4 doesn't pop in with the latest info. to help you to decide, you could send a PM her way.  Good Luck!
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  • nfranklin
    nfranklin Member Posts: 119
    edited March 2012

    Went to see the doctor today 10 days after surgery, doing well, still have drainage tube. Doctor recommended chemo, so I will start 6 months of chemo in the next few weeks. Don't really know what to expect, except losing my hair in 2 to 3 weeks after starting chemo. Don't know yet what chemo I will be taking. I know I will need help from those of you who have gone through chemo already. Everyone have a blessed day.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2012

    Does anyone know what this means-Her-2neu:Equivocal; ASCO/CAP score: 2/3. Then below is states that this tissue will be sent to a lab in California for Her2/Neu testing? To me this just doesn't sound good.

    I had another 40 cc's drained from under my arm. If it fills up again she will put a drain tube in. I had the body scan today. I didn't do well with it. I had a huge wave of panic come over me when she put the contrast die in the IV. I didn't know she was going to do that. I thought all I had to do was dring the stuff they gave me so I was not prepared and when I got the hot sensation in my thoat and chest I lost control. She was able to do the scans with what she got in me , but it just wasn't my day. I think part of it was I am terrified of the results being it went somewhere else.

    I hope everyone is having a great day.

    nfranklin- I thought your doctor was against chemo for you.

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  • ToriGirl
    ToriGirl Member Posts: 1,188
    edited March 2012

    Sisters--

    I need a few prayers as I go in for a diagnostic follow-up mammogram tomorrow morning.  I'm freaking out about it already...I just really need some support...wish you were here so I had someone's hand to hold onto...Breathe....

    Hugs,

    Tori

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  • lisamarie68
    lisamarie68 Member Posts: 1,235
    edited March 2012

    Tori .. We can be in your pocket tomorrow ..thinking good thoughts and prayers for u 

    Dianarose .. sorry for ur bad day ... Hope it gets better Love {{hugs}}

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2012

    Tori- I'll be in your pocket too. I hope it all turns out great for you. What kind of snacks to you want us to bring.

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  • sheila888
    sheila888 Member Posts: 25,634
    edited March 2012

    Dianarose...Usually 2/3 means the grade of the cancer.....which is grade 2...

    I'm not sure if it's related to HER+

    You should call your DR and ask the question WHY or how - turned to + (if)

    Sheila

    PS: I posted this on the other thread too.

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  • sheila888
    sheila888 Member Posts: 25,634
    edited March 2012

    Tori...I'm always ready for pockets. We'll be there with you.

    ♥

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  • guitarlady
    guitarlady Member Posts: 4
    edited March 2012

    Tori:  I will be thinking of you tomorrow as I too will have a visit with my dr.  I know how nerve-wracking it can be.  Hang in there.

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited March 2012

    Welcome, guitarlady!   Hope your CT results tomorrow are clean, clear, and conclusive.

    ToriGirl,  If this is your first follow-up mammo, it can be scary because you remember the last time all too well.  It does get better as time goes on.  Hope your images are all spotless.  We'll be with you tomorrow, so be sure to wear something with big pockets.  How 'bout this?  We can keep it clean with white chocolate only.

                                    

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  • ToriGirl
    ToriGirl Member Posts: 1,188
    edited March 2012

    I LOVE you ladies!  Thanks so much for the support!

    I will have big pockets!  Bring any snacks you want!  I"m easy like that!

    Tori

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  • nfranklin
    nfranklin Member Posts: 119
    edited March 2012

    Dianarose: My onocologist has indicated that I would only get minimal success from the chemo and I needed to make a decision as to whether I wanted to take the chemo or not, but I saw my surgeon today and she was very clear that I should get the chemo. It was good to have some one that has seen so much of this give me an opinion. She told me that my cancer was aggressive and that she felt I would benefit from taking the chemo. So chemo it is, I want to do what I can to make sure it doesn't show up somewhere else in body. I hope this will give me a better chance of not having a reoccurence.

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  • lwarstler
    lwarstler Member Posts: 341
    edited March 2012
    Dianarose: The Her2 being equivocal with a score of 2 means that they were not able to determine for certain whether or not the Her2 was overexpressing. I had the same issue and they ended up running 3 seperate tests to ultimately make the determination that I was HER2 negative. Hope that helps clarify a little. Also, it took about 2 weeks for mine to come back (of course I'm across the country in VA and the path department at the hospital I was using was in transition, so that could have been a factor) but if it is taking awhile, don't panic, it seems it does take awhile. Your doctor probably has an idea of what they expect (mine felt it would be negative) but they often don't like to say until they know for sure.
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  • madpeacock
    madpeacock Member Posts: 369
    edited March 2012

    Hang in there Tori and know we're with you. We'll keep the giggling to a minimum. (...hee hee hee)

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  • madpeacock
    madpeacock Member Posts: 369
    edited March 2012
    Dianarose - I was Her2+++ on biopsy and then negative on retest with FISH, and negative again on Oncotype testing, so yes, things can change. Sometimes we catch a break! Laughing
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