Does chemo help??

priz47
priz47 Member Posts: 470
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I am in such a quandary. I have ILC, nonodes,ER+. With my lumpectomy, they removed an area 0.6cm. Then with my mastectomy, there was an area 0.9cm. Since both were under 1cm, chemo was not recommended. But my onc said given my family hx of BC and OC, I could have chemo, 4 tx of AC, if  wanted. My BRAC was negative. I do not understand why the 2 numbers were not added together. And 0.9cm is awfully close to 1cm. How do I know they measured right?? I am supposed to think on this over the weekend and give my onc adecision on Monday. Is chemo worth it??

D

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  • nash
    nash Member Posts: 2,600
    edited August 2008

    Have you had Oncotype DX run on your tumor? That might help you with your decision. Also, your onc can plug your info into Adjuvant Online and give you a percentage benefit of doing chemo.

    The under 1 cm/no nodes therefore no chemo guidelines are becoming outdated with info that Oncotype DX provides (it analyzes the DNA of your tumor and gives a recurrence risk percentage and tells you whether your tumor should be hormone therapy sensitive or not. If not, you'll get a higher benefit from chemo).

    Your age will factor in, too. I was 38 at diagnosis, so the docs all said chemo was necessary just partly based on young age. 

    I don't know why they don't add multiple tumor sizes together. It must have something to do with how long it takes the tumor to get to a certain size, and if you have multiple small ones, it's not the same as having one big one. 

    Since you are grade 3, you should get a good response from chemo, b/c it targets faster growing cells. Although we have had grade 1 women here have good neoadjuvant chemo response, so nothing is an absolute. 

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  • Gitane
    Gitane Member Posts: 1,885
    edited August 2008

    Hi D,  The Oncotype DX test results can be back in about 2 weeks and give you some more information to help you decide.  It has been 4 months since your diagnosis so your onc may want to get treatment underway soon.  The grade 3 and family history are important considerations.  Multifocal tumors like yours are usually staged based on the size of the largest lesion, .9cm in your case, because this is what corresponds to survival.  At least that is how it was explained to me.  I don't know how you can be sure the pathologist "measured right" but I do know that they usually take extra care with lobular, making extra slices/slides, because of its shape.  My pathologist was kind enough to actually meet with me and show me the slides and discuss things.  I will be forever grateful to him for doing that.

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  • neeliecar
    neeliecar Member Posts: 73
    edited August 2008

    My oncologist says that chemo is the best route to reduce your chances of reoccurence especially since I decided against Arimidex.  I had too many bad SE's.  I couldn't even get out of a chair.  My oncologist has decided not to put me on anything as he says the AI's only reduce chances by 3-5%.  He said I did the important thing having chemo, so I highly recommend it. It is not a pleasant experience but it is doable.  If I had to do it again, (praying I won't have to), I wouldn't work while going through it.  It is much to draining to go through chemo and work.  I was exhausted and felt sick so much of the time, never nauseous, but like I had the flu.  Good Luck and remember only your and your oncologist can make that decision for you.  Eileen

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  • priz47
    priz47 Member Posts: 470
    edited August 2008

    neeliecar,

    Thanks for the input! I have decided to go ahead and do chemo. I want to do everything possible so that I NEVER have to do this again! I know that there are no guarentees and the risk of reoccurence is great since ILC tends to mirror in the opposite side. I watched my aunt die last year of breast cancer-it had mets to her bones. She was only 60lbs when she died and she was skin and bones! That image stays in my mind! Chemo will mean I am doing everything possible that I can. If I do not do it and I have a reoccurrance, I will always second guess myself and wonder if I had done chemo would I have had a reoccurence???

    Do you think working is too hard?? I am a nurse and work full-time in the hospital. That is what I am worried about!

    D

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  • paige-allyson
    paige-allyson Member Posts: 781
    edited August 2008

    The risk reduction for AIs is more than 3-5% for most people. You may want to check the stats from a variety of sources. My oncologist at Dana Farber was very clear that hormonal treatment was the most important component of treatment for me. I did chemo also,

    I could not have handled working during chemo. My SIL, a nurse, went through breast cancer tx years ago. She gave me a lot of good support and advice, which included, "don't work and stay away from sick people." I realize that some women have to work, or that if you work in an easy to manage, slow paced environment it might be doable, but overall my experience was that it's not.

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  • spar2
    spar2 Member Posts: 6,827
    edited August 2008

    I had invasive lobular also, I worked whenever I was strong enough, they worked with me, sometimes it was 1/2 days and sometimes it was  weeks at a time.  I did do the chemo and am very glad I did even though it was hard, did not have radiation.  It has been since jan 04 and i am cancer free now.  gentle hugs to you.

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  • Gitane
    Gitane Member Posts: 1,885
    edited August 2008

    Hi D, Working in a hospital while doing chemo may be a problem because your immune system will not be functioning well.  Could you get time off just for those months?

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  • melmedic06
    melmedic06 Member Posts: 96
    edited August 2008

    i did not do chemotherapy- my tumor was 0.9 cms with negative nodes and i was already post-menopausal (i was 54 at the time) - alot of clincians agree that chemotherapy does not always benefit ILC patients- especially ones with small tumors and since i knew i would be going thru radiation and taking arimidex i decided against the chemo- i have no regrets but this is an incredibly personal choice so read all you can- talk to as many people as you can and come to your own decision- everyone is different- i am a nurse and worked full-time during radiation but i was beat- treatment takes alot out of you and i imagine with chemo working could prove very difficult- i hope all goes well with you- keep us updated and keep the faith ladies-

     ILC - 10/04 (left breast)  0.9 cms  lumpectomy  radiation  arimidex

    DCIS 08/05 (right breast) found on mammotome- surgical tissue benign- lumpectomy- radiation and continue on with the arimidex until 2010

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  • celebrationtiger
    celebrationtiger Member Posts: 3
    edited August 2008

    Chemo will cause more harm than good.  Go read pub med.  Look for Massimo Cristifanilli at MD Anderson as a beginning. Aromatase inhibitor, radiation and surgery.  No chemo!!!  Chemo makes you sick and the hospitals rich!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Look at the clinical studies for the specific combination of chemo drugs that are being proposed for you.  The risks of chemo are many and varied, and not all of them resolve at the end of treatment.  The "A" part of AC can cause permanent cardiac damage in some patients.  If you have any additional risk factors for cardiac problems, that should factor into your decision.  There are other potential long term risks, including leukemia.

    Are the risks worth the benefit to you?

    Because you are Her2-, you don't need chemo to be the gateway to herceptin which is a reason so many Her2+ women do chemo.

    Working in a hospital setting during chemo, especially if you have direct contact with patients is also a potential problem because the chemo damages your immune system in the short term, you are vulnerable to infections, and no setting has more potent infections than a hospital. 

    Read the discussion boards of people who are currently doing AC chemo.  Find out what their side effects are.  Are they things that you can live and work with?

    Can you afford to take months off from work if necessary?

    Look at the numbers, you may find that for you, taking Tamoxifen alone may give you almost as much benefit as taking it after chemo.

    I chose not to do chemo, because for me, the long term risks of chemo outweighed the possible benefits.  You need to make the choice that you can live with and have peace of mind, no matter what that choice is. 

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  • unique
    unique Member Posts: 554
    edited September 2008

    Hi ~

     I am trying to decide what to do about chemo! So this thread is good for me. My first onc proposed TAC, but I didn't want to do the Adriamycin. I am HR+ so I am thinking chemo is not my big guns. Arimidex or Femara is what is going to really do it in (I hope). My onc said for me the Estrogen inhibitor drug gives about 10% and the chemo only about 5%. I found the recent research about using just TC and I may do that. I have three second opinions coming up, two local and one at a major cancer hospital.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    priz47 - I can understand your dilemma...I would be debating it too. You're smack dab in the middle of the two choices. Maybe it would help to ask yourself: If I choose to NOT do chemo, and if a recurrence happened, would I blame myself...never forgive myself, etc. Best wishes to you with your decision. 

    unique - We can answer your questions more accurately if we know your specific diagnosis...perhaps you can post that info...best wishes to you, regardless. It's great that you're doing the research and taking control of YOUR diagnosis.

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  • unique
    unique Member Posts: 554
    edited September 2008

    Laura ~

    Here is my diagnosis - I started the TC chemo today, but I think I will keep up with my second opinions just to make sure. TC is proposed new standard for adjutivant therapy, will replace TAC if the head to head trial TC vs. TAC shows equal efficacy. But we won't hear results for years. The old studies AC vs. TC showed TC better. Sigh.

    Good news, feel ok so far.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited October 2008

    There is no one answer - it all depends on type of BC, stage, nodes etc. For me, Chemo was a must. 

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