26 years old, considered extremely high risk and worried

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meechell83
meechell83 Member Posts: 20
edited June 2014 in High Risk for Breast Cancer

I'm 26 years old and have a genetic disorder called Cowden's Syndrome. Without going into a lot of details, it gives me various benign tumors (I've had 11 surgeries, including 4 surgeries) and puts me at a high risk for some cancers, including breast cancer. I had a scare last August, when the doctor found DCIS in some cells, but there were no cancer cells. I've been told by numerous doctors that "it's not a question of if, but when" and that a bilateral mastectomy with reconstruction is the best way to go.

I've decided to go the mastectomy route if I get diagnosed. I'm scheduled for a mammogram/breast MRI tomorrow and I'm terrified. Will I ever shake this feeling of having a time bomb in my bra? Part of me wants this to be over with. I can handle all of the other medical problems I've had, but this is really throwing me. It's like I'm split in half- half of me knows I can handle it and half of me wants to run away scared. Is this a normal feeling to have?

The irony of it all is I'm in nursing school. One of my doctors says "Are you sure you don't want to go into advertising or something?"

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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2013

    Okay, this is not the answer you are going to want to hear.  You had DCIS but your doctor said you didn't have breast cancer?  There are some doctors who call DCIS a "pre-cancer" but most experts consider DCIS to be Stage 0 breast cancer, which is the earliest stage of breast cancer.  DCIS is pre-invasive - in other words, the cancer cells are confined to the milk ducts of the breast and therefore do not have the ability to travel out of the breast; as a result, DCIS is not life-threatening - but DCIS cancer cells can convert to invasive cancer cells at any time.

    The normal treatment for DCIS is the same as the treatment for other early stage breast cancers. This means removal of the area of cancer, and depending on the size of the margins, sometimes radiation and sometimes hormone therapy.  When the DCIS was found in your breast, what surgery/treatment did you have?

    Here is some information about DCIS from this website:  http://www.breastcancer.org/symptoms/types/dcis/ 

    And here is the National Cancer Institute page on DCIS:  http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page4

    There also is a DCIS forum on this discussion board that you may want to read.

    So, back to your question, in my opinion (as someone who had DCIS that already had a small amount of invasive cancer hidden within it) I think unfortunately that for you, the time bomb has already gone off.  DCIS is pre-invasive and non-life threatening, but it is breast cancer and it does need to be treated appropriately to ensure that it doesn't evolve to become a more serious, and life-threatening, condition.

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

    Bessie knows a LOT more about DCIS than I do, but I wanted to mention my experience with Cowden's.

    When I had genetic counseling (not testing) in 2007, they suspected I may have Cowden's syndrome.  The genetics counselor at that time said she'd take my case to their peer review board.  They eventually decided it would 'be a stretch' to suspect I had Cowden's.  Cowden's is an unusual condition.  At that time, I found one website that claimed that, although undoubtedly underdiagnosed, they estimated that there had been a total of 200 people - ever, worldwide- who had ever been genetically diagnosed with Cowden's.  These numbers have probably changed, but it still is a very unusual condition.

    But the genetics counselor gave me a paper that said at that time, there was about a 25% lifetime risk of bc from the Cowden's.  I had already been diagnosed with LCIS.

    From the little I know of DCIS, I completely agree with Bessie's post.  DCIS needs to get treated.  I highly doubt if we know what the lifetime risk of invasive bc for someone with DCIS (appropriately treated) AND Cowden's really is.  In other words,  you need to get appropriately treated for the DCIS.  Cowden's may or may not give you additional risk (beyond that of appropriately treated DCIS.)  for more DCIS or invasive..  I bet there are no studies. 

    In other words, to echo Bessie, do make sure you are getting appropriately treated for your DCIS. You may need help from a genetics counselor to help you decide what contribution your Cowden's has to your treatment regimen  (if any).

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  • flash
    flash Member Posts: 1,685
    edited October 2010

    Hugs.  Listen to Beesie and Leaf.  DCIS is breast cancer it's just a different stage.  The bilat mast is difficult but doable.  The one thing you need to understand is how important it is to have a top notch breast surgeon and plastic surgeon for the mast and reconstruction. You want to make sure the docs are specialist in doing your type of surgery, not just regular surgeons who happen to do a fair number of mast or recon.  They should ONLY do breast surgery or recon.  Good luck to you.  It is very hard but you will get through it.  I can appreciate your worry about cancers.  I'm 4th generation for genetic cancers and have grown up knowing cancer would  be inevitable. (Every member of the family has something.) But take heart, I 've also seen many members of my  family who have lived well into their old age by taking it in stride and embracing the modern improvements on cancer treatment.

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  • LittleJulie
    LittleJulie Member Posts: 2
    edited October 2010

    Hi MeeChell,

    I'm 27, single, and 3 weeks post-op for my preventative bilateral mastectomy. BRCA1 positive and a huge history of breast cancer in my family, me, my fam, and my genetic counselor all felt it was not an "if but when" situation as well. I cannot describe the relief I feel knowing this risk is now down to less than 1%.

    Reconstruction options today are better than ever, and at only a few weeks post-op my boyfriend agrees that the new "girls" are very very sexy.

    Good luck with your decision, take care of yourself. Preventative action is a choice, there is no RIGHT answer, only your OWN answer. Whatever you decide is right for you IS the right thing.

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  • meechell83
    meechell83 Member Posts: 20
    edited October 2010

    Thank you so much for your encouraging words. I'm having a biopsy tomorrow due to a "very suspicious looking lump" (exact wording of report from MRI). I'm just ready to know for sure what it is and then I can concentrate on how to treat it. I HATE not knowing!

    I'm knee deep in nursing school right now and I don't know if I'm at a place to have a preventative mast. (Even though my boyfriend suggested it) . I will go ahead with the surgery if I get a dianogsis.

    I'm a little confused now. Last year the doctor said that I had DCIS in a lump that they removed. Now, when I called the nurse, she said it was atypia, not DCIS. ??? I don't know what to think. I'm quickly learning that I need to be well educated and knowledgable!

     Thanks again, and I'll keep everyone up to date when I get my biopsy results back.

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

    Hi meechell- Of course waiting is awful.  We all want to be ready for whatever is ahead for us.

    Of course, we can't tell you if you have DCIS or atypical ductal hyperplasia (ADH) or something else.  Did they give you a written copy of the pathology report?  If not, I'd certainly request one.  I'd also certainly request a copy of the pathology report from your biopsy tomorrow, no matter what its outcome.

    Sometimes it can be hard to tell the difference between ADH and DCIS, and some people choose to get 2nd opinions on the slides.  

    Often, they treat ADH and DCIS differently.  I'd want to make sure I was adequately treated for your DCIS (if that's what you had.)  There are many kinds of DCIS, and some types are much more aggressive than other types.

    Don't feel bad about lack of knowledge.  Before my 'suspicious mammogram', I thought the only people who got breast cancer were women who ignored their breast lumps.  See what I knew, and I'm a hospital pharmacist.

    Hang in there.  We're rooting for you to come out with a clear biopsy.

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  • CantStopNow
    CantStopNow Member Posts: 5
    edited December 2010

    Hi,

    I am 26 years old as well... I am recovering from my bilateral mastectomy I had 12 days ago (ace bandage and all). I just got my drains out yesterday.

    I HAD DCIS (had not have... yea!!); I also had atypical ductal hyperplasia as well as papilloma. My DCIS was not high grade. However, it grew very fast, as my tumor/mass was larger than a golf ball after 8 months. I do not have the BRCA1 gene. The cancer was only in my left breast.

    The reason I choose to have a bilateral mastectomy, is because I have been playing the "what if" and waiting game for almost 5 years. I had had 3 surgeries prior to my bilateral mastectomy. The first surgery, which was 2 years ago, came back as papilloma and it was benign. Just less than 2 years later (after the doctor told me it could come back maybe in 10 years, but that it was unlikely), I was diagnosed with DCIS, atypical Hyperplasia, and more papilloma.

    Making a decision was extremely hard. However, I knew in my heart from the start what was right for me, based on my past, my present, and my future (my dreams/goals).

    My advice to you would be to educate yourself (knowledge is power). I spoke with amazing doctors, such as the CEO of LIVESTRONG. I went to as many lengths as possible to learn about my options. Learn what you can, stay calm in this dark and scary time, lean on friends and family, but most of all trust your core and know that this is your body and your life, take control!

     Your health is more important than ANYTHING. Talk to your school/work and see what you can do to put things on hold right now. Having to take an extra semester is nothing (believe me). You need to do what is best for your health.  = I know the "not knowing" game - it's the worst, and it's one of the main reasons I decided to move forward with my choice of treatment.

    All my very best to you, from someone in who knows, from someone who is recovering.

    *There is a book by Andrea Schneider, who was also diagnosed with DCIS - it might help (it was a little scary for me to read, but I told myself it was more for me to learn)
    You Are Not Alone: Life After a Breast Cancer Diagnosis

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  • zombiefan1974
    zombiefan1974 Member Posts: 14
    edited December 2010

    I am a 36 yr old woman(duh).I have a very strong history of  breast cancer in my family.My grandmother,my aunt,my mother and my aunt on my fathers side all have been diagnosed.Unfortunitly my grandmother and aunt just passed away from it.Anyway way back when this started I had a core biopsy that showed changes and also dcis cells in one of four lumps.I had two of them removed and six months later had the others removed.I have been being watched very closely.Every three months i have a mammo and ultrasound.I recently had another core biopsy because one of three lumps became bigger and one is completly new.They want me to have the gene test done and depending on that have a mastecomy.I am taking tamofixen and I hate it to many side effects.I just want to have the mastecomy and reconstruction done,but there is a little tiny part of me that is scared.Should I just go for it?I have already researched it alot and going for a second opinon in a couple weeks.Do you think I am doing the right thing?I mean even my doc knwos how tired I am of biopsies and mammos andthe fact that my left breast is smaller then the other because of all of this.Please am I crazy?

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited December 2010

    Zombiefan,

    Have you had genetic counselling yet?  There are lots of different things to be considered when looking at your family history.  For instance, your grandmother getting breast cancer at 76 would be less worrying than an aunt getting it at 45.  There are many other idiosyncratic factors that play into your own risk profile.  Based on that, a counselor may refer you for genetic testing to look into some of his/her suspicions about your risks.

    Further, some of the possible family risks may relate to other cancer types that need other screening modalities. Surprised

    So.  Instead of asking for a mastectomy right now, I'd first ask for a genetic counsellor!

    Best wishes!

    LisaAlissa

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  • zombiefan1974
    zombiefan1974 Member Posts: 14
    edited December 2010

    My grandmother had breast cancer for as long as I can remember.She just passed at 76.My aunt passed from it also and my mother has it.My mother was diagnosed at 45 or younger.Plus I guess i have some on my fathers side also.I don't want to go with a cousellor for the simple fact is I am tired of hurting all the time and all the biopsies.I hve been through so much with all of this I am so exhausted that I don't think I can do it anymore.Plus my medical bills are just piling up because my insurance only covers my tests once a year and I have them done every 3 mnths.thanks for the advice.

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  • network1
    network1 Member Posts: 3
    edited December 2010

    have you ever thought about having some tissue testing carried out on any

    biopsy's to determine if there are any environmentalk exposureal issues

    Vince Neil

    network1@hunterlink.net.au

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  • zombiefan1974
    zombiefan1974 Member Posts: 14
    edited December 2010

    Yes I have done the tissue thing and right now and they can tell me is that I am basically a walking time bomb that the ony thing that could be doing this is my body for some reason.I have nothing on my right side,so from all these biopsies and things my breasts are uneven,which really is kind of annoying at times but not always.

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  • AndreaBednar
    AndreaBednar Member Posts: 1
    edited December 2010

    That was really sad. Rev:21:4...lets just hope as this passage states...You can do it guys

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

    zombiefan----I would strongly encourage you to consider genetic counseling and testing due to your family history.

    anne

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  • zombiefan1974
    zombiefan1974 Member Posts: 14
    edited December 2010

    I have done both actually since this past monday.But no one else in my family has been tested so it could come pack as + or negative but a false negative.I know what I want and that is the prophylactic mastecomy because all of these damnbiopsies  and lumpectomys have destroyed my breast and with my family history (which seems to get worse as i find more out) that there nothing else they could really do anyway.Thanks for the advice.

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  • aslatenrn
    aslatenrn Member Posts: 3
    edited December 2010

    So many women, after already diagnosed with breast cancer, and after going through the chemo, the radiation, etc, have always said, "If only I could have had my breasts removed before all of this happened.." 

     This was my mom's words..She was diagnosed with stageIV breast cancer at 32 years old..She passed away when I was 14. I found out a year ago that I am BRCA2+ and had a small tumor in my breast....I am only 27.

    I had my breasts removed, (bilateral mastecomies with immediate reconstruction) because I saw what my mom went through just to live. I saw the struggle she went through everyday to live for her kids. And now that I have kids, why would I just sit around and wait for that to happen to me?

    So if you know you are VERY high risk, and have weighed your options, then do what you think is right FOR YOU. We only get one life. Wink 

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