LCIS Puzzle

hsvine
hsvine Member Posts: 4
edited June 2014 in LCIS (Lobular Carcinoma In Situ)

Hi,

In 2009, after a mammogram showed "indeterminate" calcifications, I had a needle localized bioopsy and I was diagnosed with LCIS and also ADH. I had been diagnosed with ADH  in the early 1990's and have been followed with four clinical exams annually by an oncological surgeon. Since the LCIS diagnosis, I have continued with the four clinical annual examinations and MRI's annually. I, too, have considered PMBX and medications but for different  reasons those options have made me too anxious to engage in them. I appreciate the support of this forum and only know that LCIS is a murky and difficult condition to handle and deal with for all of us. I admire the bravery of everyone who writes here and hope all of us will be well.

LCV 

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  • JanetM
    JanetM Member Posts: 336
    edited January 2012

    Murky is a very good description of LCIS.  I have LCIS, ALH and ADH.  I am followed with every 6 month mammos, ultrasounds and clinical exams.  I have declined tamoxifen and have seriously considered PBMX but that sometimes feels extreme for something that most doctors don't consider "cancer".  It feels like I am waiting for the other shoe to drop....

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  • leaf
    leaf Member Posts: 8,188
    edited January 2012

    I don't know if you both have a strong  family history, but just to let you know about the range of practice of surveillance for (classic) LCIS  (+ lesser things).

    I have a weak family history, classic LCIS, ALH, sclerosing adenosis.  I started out with every 3 month ultrasound/mammogram and/or clinical exam, but after 2 years and 2 more benign biopsies (post LCIS diagnosis), I am now down to yearly mammograms and twice-a-year clincial exams.  That's what the NCCN recommends.  (I see my onc once a year, and the other 6 month exam will be from my GP.)  (PLCIS may be different, and the NCCN doesn't have guidelines for PLCIS.)

    I suspect that when you are closer to diagnosis, they give you more screening because there always may be 'something worse' they missed.  After a  few years, it is less likely there was something there that they missed at your LCIS diagnosis.

    I'm not saying I'm totally comfortable with this; my 2nd opinion said my excision caused so much scar tissue that MRIs won't be helpful.

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  • hsvine
    hsvine Member Posts: 4
    edited January 2012

    Hi Leaf,

    Thank you very much for your response. I have no family history, (mother, sibs, aunts,etc.) nor the BRACA genes or I would have sought more aggressive treatment. The 4 clinical exams have just always been suggested by my surgeons. I should mention that both in the 1990's and in 2009 my ADH was considered severe and I needed another excisional biopsy in 2009 to rule out DCIS. I am therefore left with a diagnosis of "high risk" due to the ADH and LCIS findings. Since stroke does run in my family history, I feel I would choose close surveillance or PBMX not Tamoxifen or Evista.  Thank you again.

    I appreciate Winston's advice!

    LCV

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  • liveit56
    liveit56 Member Posts: 196
    edited January 2012

    I was diagnosed with LCIS in 2007 after having spontaneous bleeding and discharge from breast, had surgical biopsy which b9 tumers were found and the LCIS...I had been on Evista but could not continue taking it because of side effects... had mammogram every six months with ultra sound and was doing good until this year where they found changes so, had a core biopsy done in Dec and it was B9...BS said they removed all the calcafacations with the biopsy and inserted a marker...I need to have mammogram every six months again. This is as you say a murky area.

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  • hsvine
    hsvine Member Posts: 4
    edited February 2012

    Dear liveit56,

     I hope you do well and just read your post. I am not a physician but just wanted to share some thoughts with you, perhaps for you to pass on to the physician/radiologist who is following you. In the 1990's I had mammograms every 6 months but current thinking is that this is not recommended due to exposure to radiation. Due to the finding of LCIS is 2009, I see an oncological surgeon 4 times a year for a clinical exam, have an annual mammogram and an annual MRI. I am not sure what B9 and BS mean but I wonder if you would consider obtaining a second opinion from a physician whose specialty is in breast oncology or oncological surgery to see what this person recommends for your follow up. I live near a few centers, such as the Dana Farber Hospital which conduct research all the time in cancer. Have you been to such a center and if not, do you live close enough to one so you could seek an opinion there without too much inconvenience to you.

    All the best to you whatever you decide,

    LCV

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  • liveit56
    liveit56 Member Posts: 196
    edited February 2012

    Thank you hsvine, B9 means benign and BS is breast surgeon. 

     I see the head of our breast health center and she is the best here where I live...she is a specialist in breast oncology and surgery.  I have no family history of breast cancer and my general doctor does my six month exam...which I am in process of getting a new doctor. 

     My breast surgeon has insured me that I am doing good and so far everything is under control.

      It is hard to wait to see if there has been changes but, glad they are keeping track of everything and as long as I keep having them if anything does change they will catch it soon.... as they did this time and it was "benign".

      I was told of my choices when I was diagnosed and I was reassured by my cancer doctor and surgeon that this was" not cancer" but a marker for cancer.  I chose to have the exams and mammograms and ultra sounds and did try the Evista but to many side effects to continue it.

      I have never had a lump or knew anything was wrong until my breast starting leaking and they did a surgical biopsy and that is when they found the LCIS...and would you believe I have talked to nurses and doctors that did not know what LCIS was and I had to explain...now that is scary.

    I hope you the best in this journey we are taking and hopefully one day none of this will exist. Take care of yourself.

    Cathy

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  • leaf
    leaf Member Posts: 8,188
    edited February 2012

    According to a 2006 SEER study, there were about 7 x more cases of DCIS  than LCIS. http://www.ncbi.nlm.nih.gov/pubmed/16604564

    I am kind of puzzled about the mammogram- radiation question.

    I have read that there is no 'absolutely safe' radiation dose (even the smallest radiation dose increases your risk of cancer to some degree.)  We are also bombarded by cosmic rays naturally, and there are natural sources of radiation we are exposed to.  I think some other variables are that the radiation dose we receive in mammograms vary with the machine, how much compression they use, and how thick our breasts are.  

    We, with LCIS, are, of course, at higher than average risk for breast cancer, but we are also more prone to the ILC, which is also  commonly referred to  as 'the sneaky one' - harder to detect with mammogram, etc.   But ILC is also thought in general to be slow growing.  So I don't know where the risks and benefits for more than annual mammograms pan out for LCIS.

    While I know part of this is 'how high is up', some prominent places say the risk of radiation of mammograms is low 

    Radiation exposure―Mammograms require very small doses of radiation. The risk of harm from this radiation exposure is low, but repeated x-rays have the potential to cause cancer. The benefits, however, nearly always outweigh the risk.

    Women should talk with their health care providers about the need for each x-ray. In addition, they should always let their health care provider and the technician know if there is any possibility that they are pregnant.     http://www.cancer.gov/cancertopics/factsheet/detection/mammograms
     

    Dr. Weil says the risk is age dependent (which agrees with what I've read)  While there's no question that radiation exposure increases the risk of breast cancer, the risk is highest when exposure occurs at a relatively young age. For example, young girls treated with radiation for Hodgkin's disease have a very high risk of breast cancer; up to 50 percent develop it later in life. The older you are when you begin to have mammograms, the smaller the chance that the radiation exposure will contribute to breast cancer. If you begin screening when you're over 50, radiation exposure from mammograms is highly unlikely to increase your risk of breast cancer later in life. http://www.drweil.com/drw/u/QAA400672/Mammograms-Too-Much-Radiation.html  and this obviously is addressed at women at average risk.  

    Digital mammograms may be better than film: The average breast radiation dose per view was 2.37 mGy for film mammography and 1.86 mGy for digital (22 percent lower for digital than film mammography)," said Hendrick. http://www.sciencedaily.com/releases/2010/01/100121135704.htm

    BRCA women, particularly younger women, may be at higher risk for radiation risk. http://www.ucsf.edu/news/2009/03/8163/mammograms-bad-young-women-breast-cancer-genes

    According to this FDA site in 2009, mammograms have about 7 x more radiation than a chest Xray. http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm095505.htm

    I don't know, but when I was getting my wire placement before my excision, I think I might have gotten, say, 10 mammograms  though I totally lost count.  (They had problems with placement, had to pull them out and place them in again.)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    I like to alternate between mammos and MRIs every 6 months for 2 reasons: there is no radiation with MRIs, and mammos and MRIs "see things differently", so what one tests misses the other one hopefully will pick up. (especially with us with LCIS, since LCIS and ILC are so sneaky). Personally, I trust the MRIs more than the mammos, but that's just me.

    Anne 

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  • leaf
    leaf Member Posts: 8,188
    edited February 2012

    I would trust MRIs more than mammos too, and, yes MRIs do not involve radiation.  However, if you don't have a strong family history I would double check if your insurance would cover, and, in my own personal case, my NCI-certified 2nd opinion opined that since I apparently had extensive scarring on my one-and-only excision, it would not be beneficial.  I certainly wish this was not the case.

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  • msippiqueen
    msippiqueen Member Posts: 191
    edited February 2012

    Yup, LCIS is a tough one. It can be a pre invasive ILC. It can be a signal of other breast cancers that can develop in the future. Both breast are at risk for the above described conditions.



    You may undergo extensive, expensive monitoring all for naught. Maybe the LCIS will be kind and just sit there and nothing will progress or change. Maybe the suggested estrogen suppressors will do it for anyone with this understudied condition.



    On the other hand a PBLM leaves you flat or undergoing more surgery for a cosmetic appearance that is vital to some women. Chest surgery can lead to lymphedema.



    All of us faced with these breast concerns and lifestyle issues that inform our decisions have lots to contemplate. In general, we are fortunate indeed to be able ro take a breather and seriously consider what option(s) work out best for our wellbeing.



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  • carol57
    carol57 Member Posts: 3,567
    edited February 2012

    Hmmm.  LCIS may be less of a puzzle than a maze.  With more than one path to the finish line. Some pathways unpleasant. Some dead-ends. All of them requiring choices based on less than optimal information.

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  • msippiqueen
    msippiqueen Member Posts: 191
    edited February 2012

    Excellent, Carol!



    Succinct and right on target.





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  • scaredycatwoman
    scaredycatwoman Member Posts: 77
    edited March 2012

    What do you mean by PBMX?

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  • scaredycatwoman
    scaredycatwoman Member Posts: 77
    edited March 2012

    What do you mean by PBLM

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    scaredycat.

    PBM======prophylactic bilateral lmastectomies

    Anne 

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  • scaredycatwoman
    scaredycatwoman Member Posts: 77
    edited March 2012

    Hi     I  just had a stereotactic biopsy of a  suspicious microcalcification cluster which showed LCIS.  I discussed what to do with 2 surgeons who both recommended an excisional biopsy to remove the area and biopsy it for cancer cells.  Most people in this discussion doesn't seem to have have this done...Am I jumping the gun to have the  surgical biopsy...

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  • JanetM
    JanetM Member Posts: 336
    edited March 2012

    I had a lumpectomy in May for 2 areas of LCIS in my left breast. Pathology from that confirmed LCIS along with ADH and ALH. Comment from my breast surgeon at my follow up after surgery was we will need to watch this closely as there is a lot going on in there. She indicated that she found more than she had expected to. Had a 6 month follow up mammo and ultrasound in November where they noted an area of fat necrosis. I go back in June for another mammo, ultrasound and clinical exam and based on what happens then I will figure out what my next step will be.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    scaredycat----a surgical excisional biopsy is pretty standard following a finding of LCIS on SCB. They are not looking to remove all the LCIS (since it is thought to be a multifocal bilateral disease, theorectically they would have to do bilat mastectomies to "remove it all"), but to make sure there is no DCIS or invasive bc in there. It's an important step in confirming the diagnosis. Do you have an oncologist yet? An oncologist can help you with your overall risk,  and go over the risks and benefits of the  various treament options.

    Janet---I go for my next MRI next week.  Will you be having any MRI in your monitoring?

    Anne 

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  • JanetM
    JanetM Member Posts: 336
    edited March 2012

    Anne - so far it has just been mammos and ultrasounds and clinical exams.  There is alot of scar tissue from previous procedures and according to my BS that makes getting a good reading with MRI difficult.  We haven't ruled it out and I will ask about it again in June.

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