Just diagnosed and confused ??

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  • leaf
    leaf Member Posts: 8,188
    edited August 2010

    When I started on tamoxifen (in 2006) I was premenopausal; I am now postmenopausal.  I'm finishing my last year of tamoxifen.  It seemed the first 2 years post-LCIS diagnosis that I was getting an ultrasound and/or mammo every 3 months. 

    I had 2 biopsies 1 week apart, 1 year after my LCIS excision - both benign (calcifications and scar tissue, respectively.)   Then my mammograms became yearly and clinical exams every 6 months.  I've never had a breast MRI.  (My NCI 2nd opinion said I shouldn't have an MRI - even a baseline one- because I have too much scar tissue.) No other breast issues.

    I have a weak family history of breast cancer, and my grandfather died of a stroke.  

    I am not trying to convince you one way or another - it is something you really need to talk with your onc about - but some studies do not find a high risk of stroke with tamoxifen.  Some of the studies provide raw numbers, to give you an idea of the absolute risk.

    In this case controlled study 2004

    In this case–control study, we found that first strokeafter breast cancer was not associated with tamoxifen use, regardlessof cumulative dose, duration, or recency of use at stroke. Strokewas associated with chemotherapy use and was more common inpre- or perimenopausal women and in women with a history ofmedication-treated hypertension or diabetes. http://jnci.oxfordjournals.org/cgi/content/full/96/20/1528

    In this 2004 study

    During a meanfollow-up period of 4.9 years, the frequency of ischemic strokewas 0.71% with tamoxifen vs 0.39% for controls (absolute increasedrisk, 0.32%; number needed to harm [NNH], 313).Conclusions: Women with breast cancer who were treated withtamoxifen had an 82% increased risk of ischemic stroke and a29% increased risk of any stroke, but the absolute risk is small.Further studies assessing prespecified cerebrovascular outcomesare ongoing and will further clarify the risk of stroke associatedwith tamoxifen use .http://www.neurology.org/cgi/content/abstract/63/7/1230

    Tamoxifen (risk ratio, 0.70 [95% CI, 0.59 to 0.82]; 4 trials), raloxifene (risk ratio, 0.44 [CI, 0.27 to 0.71]; 2 trials), and tibolone (risk ratio, 0.32 [CI, 0.13 to 0.80]; 1 trial) reduce risk for invasive breast cancer compared with placebo by 7 to 10 per 1000 women per year. Tamoxifen and raloxifene reduce estrogen receptor-positive breast cancer but not estrogen receptor-negative breast cancer, noninvasive breast cancer, or mortality. All medications reduce fractures. Tamoxifen (risk ratio, 1.93 [CI, 1.41 to 2.64]; 4 trials) and raloxifene (risk ratio, 1.60 [CI, 1.15 to 2.23]; 2 trials) increase thromboembolic events by 4 to 7 per 1000 women per year; raloxifene causes fewer events than tamoxifen. Tamoxifen increases risk for endometrial cancer (risk ratio, 2.13 [CI, 1.36 to 3.32]; 3 trials) compared with placebo by 4 per 1000 women per year and causes cataracts compared with raloxifene.... Bias, trial heterogeneity, and a dearth of head-to-head trials limit this review. Data are lacking on doses, duration, and timing of the medications; long-term effects; and nonwhite and premenopausal women. CONCLUSION: Three medications reduce risk for primary breast cancer but increase risk for thromboembolic events (tamoxifen, raloxifene), endometrial cancer (tamoxifen), or stroke (tibolone). http://www.ncbi.nlm.nih.gov/pubmed/19920271

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  • ToriR
    ToriR Member Posts: 8
    edited August 2010

    Ok Ladies....

    Add one more LCIS to the ranks.  Found out today and have been online much of the afternoon.  When I got my biopsy results last Thursday that I did NOT have cancer I was elated.  Today after seeing my surgeon and her explaining the pathology results, I am so confused.  I don't have cancer but the treatments for what I have are virtually the same than if I did.

    My surgeon is a breast surgeon who specializes in diseases of the breast and surgical oncology. I trust her.  She had a printed article ready for me today along with a copy of the pathology results.  She did go over the treatment options for this condition.  She referred me to an oncologist but did say it wasn't an emergency.

    So, how should I tackle this thing? What causes it?  Any guidance would be appreciated.

    Tori

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  • ShirleyFaye
    ShirleyFaye Member Posts: 30
    edited August 2010

    Hi tori, thank goodness you do not have cancer. My breast surgeon explained to me that LCIS just puts us at a higher risk of developing breast cancer in the future. the general pop is 12 % so people with lcis are at 25-35 % higher risk now.  the options my doc offered is to follow up with the oncologist and if pre menapause they offer tamoifen and of post menapause evista. I will be meeting with my onco at the ned of the month. My lcis is ER positive meaning estrogen fuels the lcis so the meds the give you will lower the estrogen if your er positive.  What I do is take a 1000 mg vita d each day and 3000 omega 3 flax seed oil caps and lots of fruits and vegi's. and add tumeric to my food. 

    What are the opitons your doc offered if you do not mind me asking?  And also another lady here user name leaf is super knowledgable she will probably jump in laterand help with answers. :)

    Shirley

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  • leaf
    leaf Member Posts: 8,188
    edited August 2010

    As with most things breast cancer, we don't know what causes LCIS.

    Most things about LCIS are controversial, including the name LCIS.  (Most want to call it lobular neoplasia instead so it removes the 'carcinoma' name.)  For breast cancer, it is thought that 70% of the women with breast cancer have no obvious risk factors, besides being a woman.  About 10-15% of breast cancers are thought to be from hereditary, single mutation cancers (BRCA 1 and BRCA2 being the most prominent factors.)  Being BRCA 1 or BRCA 2 are much higher risk factors than LCIS.  (BRCA1 or 2 people have at LEAST a 50%chance of getting breast cancer in their lifetime -some studies say about 65-90% or maybe a little more-this can also depend on the actual BRCA mutation.  We undoubtedly don't know all of the mutations involved in breast cancer.)

    The state of breast cancer risk prediction is quite poor for making treatment decisions for YOU, as an individual patient.

    The usual treatment options are listed here. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6.  LCIS is a weird disease.

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  • ToriR
    ToriR Member Posts: 8
    edited August 2010

    Thank you ShirleyFaye and Leaf...

    So do both of you have LCIS too? My doctor has referred me to an oncologist. She did go over the 3 options at this point which are watching closely... tamoxifen .... and bilateral mastectomy.  Like I said, for not being cancer, it sure feels like it is. I am going to take a week off from thinking or making any appointments so that everything can just sink in.  After almost 6 weeks of worry from my mammogram to the biopsy results has exhausted me!!  I do want to learn all I can from other women going through this, so I hope I can keep in touch with you both.

    Thanks to you both.

    Tori

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  • leaf
    leaf Member Posts: 8,188
    edited August 2010

    Yes, it is confusing.  LCIS is about 5 times less common than DCIS. I have classic LCIS, and nothing worse.  I am on my 5th year of tamoxifen. My gyn says in her notes I have breast cancer.  LCIS is unusal,though, so you can't really blame them.   One doctor protested my saying it only put me at higher risk by saying, "But it has carcinoma in the name!"  (A historical point: LCIS was originally described -from microscopic slides- in the 1940s by 2 prominent pathologists who thought LCIS was analogous to DCIS.  They didn't know the natural history of LCIS at the time.)

      Apparently, single or bilateral mastectomies were routinely done for LCIS until sometime in the 1990s, when it was found that lumpectomy and radiation was an option for early invasive breast cancer, and many breast surgeons were reluctant to perform mastectomies on a non-invasive condition.  They know from those mastectomy specimens that LCIS is usually multifocal (is in many different spots in a breast), and is often bilateral (in both breasts).

    Since my LCIS diagnosis in 2005, I have gotten many more medical diagnoses: a new one every 3-6 months for several years.  When you get an unusual diagnosis that is potentially serious, it takes some months/years to see if you are immediately going to end up progressing and ending up with a severe, debilitating condition, whether it will be 'just a nuisance', or something inbetween.

     Except for mastectomies, you can choose one way for now, then change your mind in the future if you change your mind or your condition changes.  If my breasts start 'being busy' again, I will certainly be re-visiting my decision so far against bilateral mastectomies.  I have a different medical condition that, IF I did get DCIS or invasive, radiation would be at least moderately if not completely contraindicated.

    Do all you need to do to make the best decision for YOU, in the time frame that is best for you.  These are difficult decisions. Unlike getting an invasive breast cancer diagnosis, where you have at most a few months to make initial treatment decisions, you can take your time in deciding  what to do with LCIS.

    Best wishes.   I don't plan on leaving anytime soon.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    Tori----I was diagnosed with LCIS  7 years ago. All my docs consider LCIS a breast cancer, just  a non-invasive type of bc (my oncologist was quite emphatic about it)-----so you can see, it is quite  controversial, even within the medical community. (It's very frustrating----if even the doctors can't agree on it, how are we supposed to ?) I took tamoxifen for 5 years and now take evista for further preventative measures. I also continue with my high  risk surveillance of alternating mammos and MRIs every 6 months and breast exams on the opposite 6 months, (so I'm essentially "seen" by some method every 3 months)---it's comforting to me to be watched so closely. Not a choice for everyone, but works for me. Feel free to PM me if you'd like.

    anne

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  • ShirleyFaye
    ShirleyFaye Member Posts: 30
    edited August 2010

    Hi torri your very welcome, Yes I have lcis was diagnoised in may of this year. I had a sterotatic biopsy That showed the lcis and also had a lumpectomy thank god it was begnin. i have a  wonderful breast care surgeon specialist who is going to do close whatch on my with a mamo on the right side in dec and a reg mamo in april of next year and wil have mri's once a year. and thank god when they did the lumpectomy there was no more lcis found in the area removed. I also will see an oncologist at the end of this month on the 31st to see what he can give me to manage the lcis, i am not to fond of the side affect from tamoxifen so not sure what else he can or will recomend I am still pre menapausal blah wish it would just go away lol.  I feel very comfortable with close monitoring and what ever meds they can give, Plus I drink green tea all day take vita d, and flax seed capsuls, and have totaly changed my diet to lots of organic salads, fresh fruit, nut , and tons of garlic and tomato with pasta. My doc mentioned diet needed to change alltho I have pretty much eaten healthy food full of antioxidents and organic foods, but have switch to grass fed meat when eating meat and eggs with no hormomes. Most food is so full of hormones and since being estrogen recepter positive I do not need to throw fuel on the fire.

    Hope this helps it really is a presonal choice, for me I would not have a masectomoy because i hate surguries, even tho if i did I could always have some nice big implants put in lol my hubby would love that, But I am happy with the ones i have. I searched the net till my eyes where poping out all about lcis and read so many other personal experiences with and what they chose and everyone is very different.  Feel free to private message me if you like. We are all here for you.

    and thanks Leaf for helping :)

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  • ShirleyFaye
    ShirleyFaye Member Posts: 30
    edited August 2010
    P.S excuse the typos lol was in a hurry Cool
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