Tamoxifen for Non Invasive LCIS

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  • georgie1112
    georgie1112 Member Posts: 282
    edited January 2014

    The way I know if a side effect is from the drug is to stop the medication. If the side effect goes away and resumes after you begin to take it, it is pretty clear to me. Not scientific. But my thin skin is from Tamoxifen. My doctor mentioned depression can be a side effect. But am not sure about that for me.

  • leaf
    leaf Member Posts: 8,188
    edited January 2014

    Yes, that's what is so much nicer about double blind placebo controlled trials.  Neither the patient or the doctors know if the subject was on tamoxifen or placebo, so the incidence of reporting adverse effects should be about the same, assuming both groups were evenly matched and there were enough subjects in both groups.  If there are very rare adverse effects, they may not show up in trials like this because they are too small, but ethically I don't know of a way for a doctor to prescribe a placebo unless (s)he's doing a study like this.  So sometimes very rare adverse effects are only found after the medication has been on the market for a while.  Its also fantastic if, in a trial, they include an older drug too, so they can compare a new drug and an old drug.  Sometimes that can't be done ethically, depending on the situation.  (For example if you are testing a drug used for stroke, it wouldn't be ethical to use a placebo because there are established medications that do help treat or prevent the incidence of stroke, so you can't ethically do a placebo in humans, at least within certain time periods.)

  • glorianna
    glorianna Member Posts: 92
    edited January 2014

    Hi,

    I Think many women here know their own bodies best. I could feel many new sideeffects, while eating the medecine

    and I suspect the others too could feel the new effects in their bodies. Trust your inner feeling

  • OCJenny42
    OCJenny42 Member Posts: 4
    edited February 2014

    I was just diagnosed with Lobular Cancer in my left breast on 2/10, I can't believe it. It's only been 6 months since I was diagnosed with LCIS in my right breast. I felt something on my left side between Xmas & New Years it felt like a cyst so I wasn't to worried. By the time I saw my doctor in mid January to discuss taking tamoxifen (which I decided not to take, but to wait & see how the next year or two goes) I didn't feel it anymore, I mentioned it to her so to be safe she order an US.. What I was feeling were two small cyst, but they found something suspicion in another area. They ordered a biopsy which was done on 2/6, it came back cancer. They won't know if I'll need to do chemo until after they remove it, my doctor wants me to decide if I want to do a lumpectomy or double mastectomy. If I do the lumpectomy then I'll need to do radiation therapy. I want to have the mastectomy, but I'm scared to death of the actual surgery. Is it as bad as I'm thinking it is?  Mentally I can't keep going though biopsies and possibly more surgeries & if I were to develop BC again later I don't know what I would do.. 

  • leaf
    leaf Member Posts: 8,188
    edited February 2014

    I'm so sorry, OCJenny.  I have not had a mastectomy, so I don't know what having a mastectomy is like. 

     Its extremely likely that your lobular cancer (I assume you were just diagnosed with invasive lobular carcinoma, ILC, since you mention chemotherapy) was present way before you were diagnosed with LCIS.  It is thought that most breast cancers have been in the breast for some 5-10 years before they can be detected by *any* means.  ILC in general is thought to be a slower growing cancer.

    Best wishes to you as you make these important decisions.  You can also visit the surgery and radiation forums.  Remember, people who have problems with a certain treatment are much more likely to post than people who have no problems with a treatment.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2014

    Hi OCJenny - Mx surgery is definitely not easy, but certainly doable. Each person reacts differently. Of course it depends on whether you are having reconstruction or not and if you are having reconstruction, what type. I did my homework by reading on these boards, asking questions, and getting a book called "The Reconstruction Guidebook". I had reconstruction with TEs and later exchanged to implants. No option is perfect. The main thing is beating back the cancer beast. Best of luck. If I can help in any way let me know.

  • OCJenny42
    OCJenny42 Member Posts: 4
    edited February 2014

    The doctor said it was cancer this time, does that mean it's invasive lobular or it's only invasive once it spreads to the surrounding areas? The scary thing it showed up on the US, but not on the mammo they performed the same-day and it didn't show up on the mammo & MRI I had done 6 months ago.  Did any of you still have pain from the needle core biopsy a week later? 

    Thank you! 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    Jenny---it sounds like ILC, since they are talking about radiation, and possibly even chemo.  LCIS is non-invasive bc which is contained within the lobules;  ILC is invasive bc  which is found in the surrounding breast tissue.   (but that does NOT mean it is metastatic    (I think that is what you are asking?)----that is only if it has spread to distant areas of the body beyond the breast.)  Hopefully, since you have been watched closely, they have found it early and you won't have to have any chemo. My mom had ILC many years ago with negative nodes; had lumpectomy, radiation, and tamoxifen and has not had any recurrences in over 27 years!. I wish the same for you.

    anne

  • leaf
    leaf Member Posts: 8,188
    edited February 2014

    Hi there! 

    Yes, I did have pain after my core biopsy a week later.  We're all different with respect to pain.  Its normal to have some swelling (hardness) in the area.  I had shooting pains in the breast, which gradually decreased over the next many weeks.  If the area is tender, red, and swollen, then you may want to check with your doctor if it might be infected.

     To explain invasive versus in-situ, think of the network of lobules and ducts in the breast as the streets in a town.  Its a rather strange transportation system, to be sure, because none of the streets intersect, and they all end in a dead end.  The streets are like ducts; the dead ends are like lobules.  The lobules are where milk is made after childbirth.  The milk travels from the lobules (the dead ends) through the ducts (the streets) to the nipple.  The sidewalk lines all the streets and dead ends.  These sidewalks, in microscopic terms, is the basement membrane, that lines all the ducts and lobules.  

    Normally, there is a layer of cells that line the ducts and the lobules.  When these cells that line the ducts and lobules multiply, you can have ductal and/or lobule hyperplasia (hyper meaning there are more cells.)  This is analogous to instead of having cars parked neatly at the side of the street, you have more cars that are double or triple parked.  When you have atypical lobular or ductal hyperplasia, these double/triple etc cells look beat up (they do not look normal).  However, they are all in the street.  When you have LCIS, you have these beat up cars totally filling the dead ends.  (Some pathologists say it looks like 'marbles in a bag'.)  But in DCIS and LCIS, even though the cells look abnormal (beat up),  they are contained by the basement membrane; in other words the cars are ONLY found on the street.   So LCIS and/or DCIS by itself cannot spread to other places; it cannot kill you; it cannot get into the blood or lymph.  That's why many oncologists do not consider LCIS (and to perhaps a lesser extent DCIS) as breast cancer.  There is some controversy about this point though.

    When you have invasive breast cancer, these beat up cars (cells) are not only on the street, they cross the basement membrane, and go up the driveways into the houses (into what is called the 'stroma' of the breast).  These abnormal cells can enter the bloodstream and/or lymph nodes and go to other places in the body.  Normally, if they do this, some are caught in the lymph nodes, which is kind of a 'filter' for the lymph fluid.  

    I am not up on all the aspects of metastasis; I think (but am not sure) that before diagnosis, an invasive cancer can release some cancer cells into the blood or lymph.  I don't know if every invasive breast cancer does this, or whether just advanced breast cancers do.  

    ILC is sometimes called  'the sneaky one'; it can be hard to diagnose; it is more difficult to see on mammograms, ultrasounds, and MRI.  It tends to form sheets.  Invasive ductal cancer (IDC) tends to form a lump (as opposed to sheets.)  

    Since you have been followed closely, it is more likely  (and we certainly hope of course) that you have earlier (rather than advanced) breast cancer.  

    Try to examine all of your options, and select the one that is right for you.  It doesn't matter if your choice is different from someone else's choice; it only matters if its right for you.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    awesome analogy, Leaf!  That really explains it well.

    Anne

  • iammommy
    iammommy Member Posts: 213
    edited February 2014

    Brilliant analogy, Leaf!

  • leaf
    leaf Member Posts: 8,188
    edited February 2014

    Thank you.  I forgot to add that the roads (ducts)  leading to the dead ends (lobules) are twisting but do not ever, or hardly ever, intersect, ?like a sagebrush? You have dead ends( lobules) all over your breast (between your nipple and chest wall).  Some pictures show ducts in a line that lead to lobules near your chest wall. The ducts normally lead a convoluted path from the lobule to the nipple, and you actually have lobules at many levels in your breast.

    Also, I want to add that, of course, overall, the majority of women who do get invasive breast cancer do NOT die of breast cancer.  They do know that, unlike some other cancers, that misplaced breast cancer cells need the right 'milieu' to grow: perhaps the cancer cells need the right hormones or signals or supporting cells.  When they do breast surgery or breast biopsy and spread some cancer cells in the process, with conventional treatment, most of those spread cancer cells die.  Its very rare that/controversial if  breast cancer is ever spread by 'seeding'. (Its hard for science to say 'never', and this point is difficult to study.)

  • OCJenny42
    OCJenny42 Member Posts: 4
    edited May 2014

    Thank you all.  Farmerlucy the Reconstruction Guide book helped me so much, the doctor was amazed at how much I knew. I went into my plastic surgeon visit pretty much with my decision made. I'm just 4 weeks out from having the double mastectomy with reconstruction. The doctor said I made the right decision, on the left side they found 2 invasive lobular tumors the biggest begin 2.2cm & LCIS and on the right DCIS & LCIS in about 40% of my breast, there were no lymph nodes involved thankfully. I'm a stage 2a I find out on the 27th if I'll need chemo, I'm hopeful I won't need it. Again thank you all for your help.   

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited May 2014

    OCJenny  - I'm glad your surgery went well and you got that #%^* out. I hope you have an uneventful recovery and excellent healing. No one wants to do the Bmx, but sometimes it does turn out to be the right choice  - that doesn't make it any easier to accept. Praying for a low oncotype score for you!

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