moved from worried but not diagnosed to high risk

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mckenna
mckenna Member Posts: 413
edited June 2014 in High Risk for Breast Cancer

i am 36, have 2 young children but never given birth/breast fed.  i had left nipple discharge but nothing was found on mammos or ultrasounds but had ductal excision because a papiloma was the suspected cause of discharge.  reports came back with multiple papilomas and atypical ductal hyperplasia (adh).  bs suggested follow up mammo of affected breast in 6 months for a new post surgery baseline mammo then mammos on both breasts 6 months after that then yearly mammos.  i am worried other ducts have adh but just like the duct that was removed is not able to be detected via mammo or ultrasound.  i don't know how to not worry, cancer could be growing in either breast at this point it is just not able to be detected.  how do you keep from worrying all the time.  i am only 3 days post finding this info out, i am hoping it will get better with time.

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited October 2010

    I'm sorry you are worried.  ADH doesn't mean you will absolutely get cancer, so keep that in mind.  They removed your abnormal cells and that might be all you ever needed.

    You can't live in a state of worry and fear forever.  It's normal to feel that way when newly diagnosed but it will fade.  First, even if you do end up with cancer, it doesn't mean a death sentence.  It doesn't mean you will even have to have a mastectomy.  Your imagination is a lot worse than the reality. I had  a mastectomy, did chemo, am still doing herceptin and none of it was as difficult as I had thought when I first heard the words, "You have invasive cancer."

    So, my advice to you is to try to put it aside. Concentrate on your two babies, look at the blue sky and the green trees and breath in  some fresh air.  You cannot change the future, all you can do is live in the present.  The odds are nothing else will ever happen to you.  So, try to enjoy it.

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

    McKenna-----I was diagnosed with a similar, but slightly different situation 7 years ago. I have LCIS, which is a stage 0, in-situ non-invasive bc (a step further along the bc spectrum with double the risk of ADH) and my risk is further elevated by family history of bc (mom had ILC). I had a lumpectomy, took tamoxifen for 5 years, now take evista for further preventative measures, and continue with my high risk surveillance of alternating mammos and MRIs.  LCIS is known to be difficult to image with any method (mammo/US/MRI) and is thought to be usually multicentric, multifocal, and bilateral in nature. So it can be everywhere and anywhere. I just went thru a difficult week as something was seen on mammo and I had to have more views, a f/u US, several discussions with the radiologist,(as it seemed to correlate with spots seen on MRI etc.) Turns out it was just overlapping tissue, which is a common occurence during a mammo.  You asked "how do you keep from worrying all the time?"  Well, we wouldn't be human if we didn't worry, but I have found that taking preventative meds and being closely monitored goes a long way to help give me peace of mind, knowing I'm doing what I can to help decrease the risk (also trying to follow a healthy lifestyle of diet and exercise); but prayer is what helps me the most, knowing that God will give me the strength to handle whatever happens. My faith has really helped me thru a lot of difficult times. 

    Have they suggested you take tamoxifen? Generally, the recommendation for ADH is just yearly mammos and breast exams every 6 months, but they often will recommend tamoxifen if there are other significant risk factors, such as family history.

     Anne

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  • mckenna
    mckenna Member Posts: 413
    edited March 2012

    thanks for your replies.  they have not recommended tamoxifin but when i asked about it he said he could refer me to an ocologist if that would make me more comfortable.  i decided i would wait til my 6 month follow up and see how i am feeling at that point.  i don't have any other risk factors,just one aunt with bc @ 42 but bs said not likly related.  i think i will try to stop obsessing and start living a healthier more active life style to help give me some control over a situation i can't change.  thanks again for taking time to reply, it helps to get some perspective

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  • JanetinVirginia
    JanetinVirginia Member Posts: 1,516
    edited October 2010

    My only suggestion is to ask about including MRI in your screenings.  Mammo missed my mass; ultrasound saw it.  Lo & behold, after MRI ,another smaller mass right next to the first one showed up on MRI that both the mammo & US missed.  So use everything out there - each technique has its limitations and benefits.

    Are you seeing a breast surgeon or your gyn?  If you've got a breast cancer center near you, that's the perfect place to follow up.  If they see anything suspicious they can biopsy right then - none of this waiting and worrying between screening & biopsy. 

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  • mckenna
    mckenna Member Posts: 413
    edited March 2012

    thanks for the suggestion about mri, i am going to bring that up at my 6mo mg/ov.  i have decided to look at the findings from the excision as a blessing.  now i know to be more pro-active in my care and i would not have known to do that had i not needed the surgery.  thanks for eveyone's help.

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

    If your MRIs may be *screening* MRIs, not *diagnostic* MRIs, then they may or may not be covered by insurance.  You may want to check into this before you have one, as an MRI may cost about 1-several thousands of dollars.

    Some women with LCIS (which confers a higher risk than ADH, from all I've read) with weak family histories have had trouble getting an MRI *screening*. http://community.breastcancer.org/forum/95/topic/756974?page=1#post_1961441 (Even some LCIS *with* a family history have had trouble getting them covered.)

    I just want you to be prepared.

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  • vmudrow
    vmudrow Member Posts: 846
    edited October 2010

    I was diagnoised with ALH (in the lobes) in January.  Was sent to an oncologist who wanted me to take Tamoxifen for 5 years.  Since I have a strong family history of bc and did not want the drugs, the MRIs and more biopsies (I've had several) I opted for masectomies.  That was in May, insurance covered them and on Friday I go in for my exchange surgery.  I am a worrier and was tired of it all!!  Good luck!

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  • mckenna
    mckenna Member Posts: 413
    edited March 2012

    thanks leaf and vmudrow.

    i am not looking forward to what i am sure will be many biopsies should anything suspicious show up.    hope your surgery goes well on friday.

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  • kjbrown92
    kjbrown92 Member Posts: 115
    edited October 2010

    Just curious how they can say that a premenopausal aunt who had breast cancer wouldn't be related? It's still a risk factor. Do you know your family tree above that? I have no aunts, no first cousins, and 3 out of 4 of my grandparents were only children. So of the relatives I do have, my mother had premenopausal breast cancer, and my father's mother had breast cancer in her 80s (her mother died in her 40s of "stomach" cancer, but it could have been cervical or ovarian at the turn of the century). I had a diagnosis of ADH in July. For me, with family history, they suggested increased surveillance and tamoxifen. I tried the tamoxifen and couldn't tolerate it -- screaming at my children all the time and hip pain so excruciating that I was limping around even on lots of anti-inflammatories. I don't deal with worrying very well. I am scheduled for a prophylactic bilateral mastectomy on Nov. 2. I'm 42. I just want the anxiety to be over.  Some people  are worriers, others not so much. Some people choose to not know at all (no screenings), some people choose regular surveillance (mammograms), some people have increased surveillance, and some people take the chemoprevention, and others choose to have surgery. It's a very personal choice. And it's whatever YOU are comfortable with.

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  • mvspaulding
    mvspaulding Member Posts: 446
    edited October 2010

    I too had a biopsy in June and they found ADH.  My BS suggested Tamoxifen.  But because I had some other problems (endometriosis) and I am having a knee sugery in about a month, I decided to put off the Tamox.  Or might not even take it at all.  I have a follow up mammo in Dec. and then MRI after that.  Depending on how those go, I guess I will reconsider the drugs.  Just reading about all the side effects was making me sick and scared.  After I decided not to take them right now, I felt better.  Every person handles it differently, but I just decided taking the drugs and dealing with the side effects may make me feel like I am sick when right now I have not been diagnosed with anything but ADH.

    Good luck!

    Melissa

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  • happymom8285
    happymom8285 Member Posts: 205
    edited October 2010

    Does anyone know if ADH is hormone related?  If it's not, why would tamoxifen be recommended? 

    Also, your biopsy maybe should be, if it wasn't already, tested to see if it had those hormone receptors.  I'm leary of taking a potent med like tamoxifen, if I don't have the receptors.  And, kjbrown is right, the SE's can be nasty!

    I've had mammos/us yearly for over 20 years.  My breasts were very dense.  Fibrocystic, I also had many papilomas, biopsies, lumps removed and cysts drained.  Strong family history. 

    Please set aside your worrying.  Wait for your 6 month checkup.  Keep doing your self exams.  Be vigilant and pro active.  You're doing everything you're supposed to be doing.

    My BS never recommended an MRI until I was diagnosed with BC.  He said there are too many false/postive readings.  And leaf is right.  Ins. won't always pay for them.

    You're worrying is not going to change anything one iota, except make you miserable.  Enjoy your life.  When/if it comes, you'll be prepared and cross that bridge when you come to it. 

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  • leaf
    leaf Member Posts: 8,188
    edited August 2013

    <Does anyone know if ADH is hormone related?  If it's not, why would tamoxifen be recommended? >

    I'm not sure what you are asking.   Most ADH does seem to be ER +, at least according to this 2009 book. http://books.google.com/books?id=HJCU7c4uf8YC&amp;pg=PA41&amp;lpg=PA41&amp;dq=Is+most+ADH+ER+?&amp;source=bl&amp;ots=XMZ68tREXj&amp;sig=NP161IcrDNPo16Wk2o2tW97wnk8&amp;hl=en&amp;ei=t32xTP20II-8sQPUoPjiDA&amp;sa=X&amp;oi=book_result&amp;ct=result&amp;resnum=3&amp;ved=0CBkQ6AEwAjgK#v=onepage&amp;q=Is most ADH ER+?&amp;f=false

     Tamoxifen does seem to be effective in reducing the risk of ADH patients.

    The findings from the B-17 and B-24 studies are related to those from the NSABP prevention (P-1) trial, which demonstrated a 50% reduction in the risk of invasive cancer in women with a history of atypical ductal hyperplasia (ADH) or lobular carcinoma in situ (LCIS) and a reduction in the incidence of both DCIS and LCIS in women without a history of those tumors. http://www.ncbi.nlm.nih.gov/pubmed/11498833

    One study (Fisher, Costantino, Wickerham, et al., 1998) examined the effect of tamoxifen therapy on patients with AH. Patients were not separated according to ALH vs. ADH. In this study, 1,193 patients with atypical hyperplasia were followed for up to 5 years. Of the 614 patients who were treated with placebo, 23 developed breast cancer (3.7 percent), compared with three of the 579 patients who were treated with tamoxifen (0.5 percent).

    While long-term, confirmatory studies are necessary, the above results suggest that tamoxifen therapy is highly efficacious in decreasing the incidence of breast cancer following a diagnosis of LCIS or AH.http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=erta33&part=A48422

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  • mckenna
    mckenna Member Posts: 413
    edited March 2012

    i have also decided to wait til my 6 month check up and at that time i might ask to be referred to an oncolgist to discuss in more detail options.   the further i get from the actual results the more i feel comfortable with things as the are now.  i am just thinking about it like this, those cells were there before whether i had had the excision or not.  now i have the information and like someone else said, knowledge is power.  now if i start having to have multiple biopsies for suspicious findings, i may change my mind but right now i am feeling more comfortable each day with what i know and how we are proceeding at this time. 

    mv spaulding, i would love to hear how your 6 month appointment goes, please keep us updated and good luck for all clear. 

    kj, i am not exactly sure how they can say my aunt and i are un-related but i do know several generations back and she is the first with breast cancer so maybe that is why?  if i do end having a consult with an oncologist, i do plan on bringing her up again just to hear it from someone else that our two situations are likely un-related.

    thanks again everyone for your great support

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  • spongebob101
    spongebob101 Member Posts: 4
    edited October 2010
    Aside from your nipple discharge did you have any breast problems? What about a breast pains did you feel it also aside from nipple discharge? If not you don't have to worry to much, cause you also say that all your test is negative from breast cancer... Just pray and hope that you don't have or will not have a breast cancer...
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