Where do I fit in?

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kimber_1616
kimber_1616 Member Posts: 99
edited June 2014 in High Risk for Breast Cancer
Where do I fit in?
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  • kimber_1616
    kimber_1616 Member Posts: 99
    edited April 2012

    I had a prophylactic bmx Feb 9 2011, had 10 surgeries for a very complicated DIEP and a lat flap after failure on left side. I was off work for six months and last year was basically a living hell. My mom died at 51 from bc, first dx'd at 38 and my Grandma is a two time survivor.



    My daughter 14 wants me to join her at Relay for life this weekend as a survivor. Thing is, I am not a cancer survivor. Sure the possibility was there but early diagnosis of many issues all sparked by a large lump helped me to decide my fate of surgery. I just feel like I don't fit in anywhere! I am not a breast cancer survivor, yet feel different then those who have their own boobs. Anyone else feeling like they don't belong:/

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  • pminxy
    pminxy Member Posts: 44
    edited April 2012

    Dear Ca Ca, you are still alive so yes you are a cancer survivor, no matter what else is going on in your body! Join your daughter and go in the Relay for life it is an amazing and fun activity where you have fun with people of all ages and they do look after you really well. I had the fortune to take part in it as a Nurse of the Year Entrant before I started my BC journey in 2004 and I tell you this is now my 3rd dance with BC and possibly my final as I am dying but if I was well enough and they had enough oxygen bottles around the track I would be doing it not just for the relay and fund raising but for the survivors/battlers and others who you meet who could become long term friends for you! Don't be afraid to go out there, be proud that inspite of all you are going through you are soldiering on_I know you can do it and I bet your daughter would be so proud and happy that you do it. I know my one step grand child at 14 she was a regular little mother and worrier about me but that little one was always egging me on, she turns 21 this year and no matter what is happening to me I plan to bre there!

    Re my new boobs which where done by way of a bi-lateral tram flap operation ,as I told them if they ccould give me new boobs via from parts of me yes go ahead if not don't bother; for out of it I got a nice rack and a tummy tuck and one can't complain about that !

    I felt alien and even alienated unwomanly with one breast and the back pain as you breasts actually balance out the weigh of your bottom. I had to have my right breast removed the day of the reconstruction as it had aggressive pre cancerous cells in it so I was told I was on the table for12 1/2 hours and ended up in ICU as my body went into shock from all the things done to it. When you have a hysterctomy you think yea! no more periods and stuff bar the darn power up sweats from the change of life it pushes you through- but when a woman loses her breasts, she loses not ownly the things that identify her as female before anything else and the things that make your clothes look good! But you lose a part of yourself I felt neutered and so alone, that people were staring and new I was only a faux woman now, the strangest things go through your head but in saying that your subconsious plays on your self doubt among other things. We are luckt that we have a limb that though it is amputated it can be replaced and make you fel whole and you get nipple too whic is great though I am not concerned about dying mine as I am just grateful to feel like a woman again! Listen to your body and your gut, don't let your head over rule you because it is the cause of what your going through along with the C. You have been through much and may go through more so take time to ejoy yourself, your little one and the company of people who have or are walking in your shoes-I know you can do it! Live well, laugh long and love joyuosly and all will be well, I will be checking in on you hopefully between hospital so take care and good luck!

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  • Sarann
    Sarann Member Posts: 10
    edited April 2012

    Dear Kimber, I know how you feel, it's like not quite fitting in anywhere, not with the women who have had cancer and also not with the women who have NOT had cancer - I have two reconstructed breasts without ever having had cancer, unless you count ADH and LCIS (and in the final pathology even some DCIS).  But these things are kind of  not-quite-cancer - I did not need chemo or radiation or any drugs - just the BMX.  I am sorry that you had such a bad time last year and also that you lost your mum at such a young age and I really hope things will be better for you this year.  But you know what, I think we are our own particular group - there are a lot of us around so don't feel alone. Thinking of you!   

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  • CLC
    CLC Member Posts: 1,531
    edited April 2012

    I had ADH in 2010, then DCIS in 2011.  UMX, no recon.  I don't worry about where I fit in.  I know that the DCIS is cancer, so this puts me in a slightly different category than you, but only one hair over the line.  No chemo, no rads...just no breast either.  And...there are lots of women here in the same or very similar boats.  If you find it helpful to be here and get support, then the website is for you, just as it is for someone who actually heard the word cancer. 

    I think it is important for us to remember that we are not facing the same issues as those with more advanced cancer.  But I think everyone (or almost everyone) here understands that those with prophylactic mastectomies and those of us with very early stage cancer are facing issues and find support and help here.  I go on the threads that are most meaningful to me personally...(the running thread, for example)...I feel accepted and understood.  I hope you can feel that you "fit in" soon, too.

    As for the relay...my personal opinion is you get to decide how to define yourself.  You've survived a heck of a lot.  Maybe it isn't cancer...but on the other hand...maybe it is...you have averted getting the damned thing, by having prophylactic mastectomy.  And it sounds like your survival of this took a pretty big battle...10 surgeries...  So...if you want to enter as a survivor...I think it is okay to do it... so long as you are sensitive to the fact that that means something very different for you than someone who is battling advanced cancer.

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  • Beesie
    Beesie Member Posts: 12,240
    edited April 2012

    kimber, the term that's been created to describe women in your situation is "previvor".  That's where you fit in. 

    http://www.facingourrisk.org/info_research/previvors-survivors/cancer-previvors/index.php

    From the above website: " "Cancer previvors" are individuals who are survivors of a predisposition to cancer but who haven't had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The cancer previvor term evolved from a challenge on the FORCE main message board by Jordan, a website regular, who posted, "I need a label!" As a result, the term cancer previvor was chosen to identify those living with risk. The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

    The medical community uses the term "unaffected carrier" to describe those who have not had cancer but have a BRCA or other cancer-predisposing mutation. The term applies from a medical perspective, but doesn't capture the experience of those who face an increased risk for cancer and the need to make medical management decisions. Although cancer previvors face some of the same fears as cancer survivors, undergoing similar tests and confronting similar medical management issues, they face a unique set of emotional, medical, and privacy concerns."

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  • loriio
    loriio Member Posts: 247
    edited April 2012

    Bessie,

    Thanks for your post. I like that term: previvor.

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited April 2012

    Kimber,

    Oh, I'm sorry for all you have been through - sounds like a really rough year!  I wouldn't categorize you as a survivor, though - cancer is a pretty unique experience.  But I like the term previvor - hell, I wish I was one - it would mean I reduced my risk before I got this stupid cancer.   

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  • Cats134
    Cats134 Member Posts: 131
    edited April 2012

    Oh, I know how you feel.  After 6 months of biopsies and repeated diagnosis of LCIS, ALH, radial scarring in both breasts, and a suspicious area in my right breast, I had what turned out to be a PBMX last December. 

    My daughter gave me a pink survivor bracelet right after surgery which I proudly wear.  But I was told by someone that I'm not a survivor and that I shouldn't wear it.  I don't feel a need to label myself.  However, I went thru 6 months of hellish biopsies, being scared out of my mind, having my family being scared out of their minds, and in the end I lost my breasts.  Four months after surgery and I'm still healing, both physically and emotionally.  Do I need rads or chemo... thankfully no.  But BC has touched my life and the lives of those who love me.  

    Go to the Relay for Life Walk... I'd like to think that we are all in the fight to beat cancer together!

    Cats 

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  • Pointvalue
    Pointvalue Member Posts: 146
    edited April 2012

    Dear Kimber,

    I met with a surgical oncologist yesterday to discuss my options. Like you, I am at high risk and am facing a pbmx this summer. My mother dx at 48 and died at 53. Her sister dx at 60 and died at 71 from leukemia. I also have two great aunts, one dx at 50 and died in her 70's of lung cancer. The other dx in her early 60's. Both aunts never had children. On my paternal side my grandmother dx at 70 died at 73. Her sister dx at 70 and is alive and well.



    I do not have the Brca gene, however my oncologist said that my lifetime chance of developing cancer is roughly 30 percent. The Gail model only takes into account first degree relatives.



    Yes we are in a 'gray' area. It's a lonely place. I have not told my family or friends about my decision. My husband is struggling with the idea of me removing my breasts without a dx of bc. It's not because he will miss that part of my body. He thinks I am being unreasonable, but knows it is my decision.



    Like you, I lived under this cloud for half my life. My mother was diagnosed when I was 23. I will be 46 next month. I am tired by the close monitoring and the anxiety it causes me and my husband. I know it effects our three children too. They are silent previvors too!



    Perhaps you should have a special t-shirt made listing your surgeries and the names of those departed to honor them. You survived because you were aggressive and had enough! You are a previvor!



    Walk with your head held high and be an advocate for those who are motherless like you and me, and live with this uncertainy everyday!



    Always,



    Elise aka pontvalue

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  • kimber_1616
    kimber_1616 Member Posts: 99
    edited April 2012

    Thank you all with your posts. I was on my phone and I am severely struggling with the signature portion, and for some reason it is putting me as Ca Ca.

    I was feeling very sory for myself last night, as we all have those moments... cancer or not! I am going to Relay and didn't make myself clear enough, that my daughter wants me to walk with the survivors. I love the previvor!! That is totally awesome!

     Elise, I had a very large lump that appeared in my right breast. It was palapable, but it was not visible on Mamo's becaues of density issues. I immediately wanted a pbmx. My dh wanted me to think things out further, which I did and ended up right in the same spot. As a result, the lump was not cancer, however my dr. explained I was a time bomb. I had Fibrocystic Changes, Fibrosis, Microcysts, Adenosis, Columnar Cell Change, Focal fibroadenomatoid change,  Benign ductal epithelium and moderate duct hyperplasia without atypia. My primary, breast surgeon, and ps all side I did the right thing, but I second guess it at times. Then I get out my pathology and read it and google it.

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  • kateys
    kateys Member Posts: 1
    edited April 2012

    Beesie- thank you for the term.  I have massive family breast cancer and I was the only surviving member.Not a single female on my mothers side made it past 59 years old.  I had the genetic testing done.  I had a BRCA II mutation but never diagnosed with cancer,  I was diagnosed with 87% chance of cancer.  I had the bi-lateral double masectomy with Diep flap reconstruction in October.  Surgery was 16 hours and I have never felt that kind of pain before.  I have had my second surgery and I flew through that one.  Last surgery set for end of June.  I am a Previvor and have less than a 5% chance at breast cancer now.  It was a tough decision to make- but I would do it all over again for the same results.

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  • vmudrow
    vmudrow Member Posts: 846
    edited April 2012

    kimber - I know how you feel.  I had a PBMX in May of 2010 - and for the last two years when I walked in the race I felt great for being there, but also wasn't sure where I felt in.  Negative for BRCA, but 40% lifetime risk of getting BC, diagnoised with ALH.  Very happy with the results - TEs with implants.  Since there are becoming more and more ladies having PBMX I wish they would make a shirt that said Previvor!

    Pointvalue - My parents objected to my having masectomies with no cancer diagnosis (and my my had BC and went through chemo etc) - some people just can't understand and think you should wait until something more develops.  I was tired of the worry, testing etc.  Good luck and keep us posted.  What kind of reconstruction are you going to have - if any?

    Hugs, Valerie

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  • vmudrow
    vmudrow Member Posts: 846
    edited April 2012

    Oh and there is a thread on here called PBMX for ALH or ADH - I'll bump it up for you so you can read about others that have had surgery with no cancer diagnosis - if you are interested...

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  • Pointvalue
    Pointvalue Member Posts: 146
    edited April 2012

    Hello,



    Thank you so much for your post. My surgical oncologist suggested inplants. She feels that deip surgery is risky. I would prefer the deip flap but I understand her concerns with the length of time I would be under.



    Thank you so much!



    Elise :)

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  • vmudrow
    vmudrow Member Posts: 846
    edited May 2012

    Elise - let me know if you have any questions.

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  • Pointvalue
    Pointvalue Member Posts: 146
    edited May 2012

    Hi Valerie,



    I do have a lot of questions! You are so wonderful to reach out to me. I was wondering what implants feel like on the body? Do they feel foreign?



    Thank you so very much!



    Elise

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  • vmudrow
    vmudrow Member Posts: 846
    edited May 2012

    Elise - the implants do feel a little weird, but I think I'm getting used to them.  What is weird is when exercising I can feel the pec muscle moving - but it's not bad.  I'm going to send you a PM.

    Valerie

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  • girlguru
    girlguru Member Posts: 26
    edited May 2012

    I think you are what they call a "pre-vivor". You largely removed the possibility of cancer. You've done a brave thing for yourself and your family. I think you should proudly march with the survivors. Nobody knows if you would have gotten cancer or not and now you have an extremely high chance of never having to deal with breast cancer in your lifetime! That's something to celebrate! Congratulations! 

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  • SecretAgentL
    SecretAgentL Member Posts: 86
    edited May 2012

    What a wonderful, wonderful thread. So supportive and loving. I love this, and I love all of you.

    xoxo,

    Laura

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  • DocBabs
    DocBabs Member Posts: 775
    edited May 2012

    Kimber, I don't think it's necessary for you to put any kind of label on yourself.Indeed , you did not have cancer and even though your Mom and Grandmother did , you might have lucked out and never gotten the disease.You can and should walk to honor the memory of your Mom and Grandmother.BTW I am totally in fovor of your proactive steps. No explaination is necessary for anyone.

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