My Question

flocolan Member Posts: 4
edited March 2014 in Breast Cancer #1
My name is Flo I live in NC outside of ft. Bragg. I am 37 and the mother of 5 girls and 1 boy. I had a lumpectomy in early 2001. I found my cancer by accident, an overzealous intern wanted to do a complete work up and included a mammio due to family history, grandma and mom died of breast cancer. In any event...I am once again headed for more surgery..on Wednesday..I refused chemo the first time around and probably will questions are actually 3 fold....first I never ever feel sick..not even once..tired but I have six kids, I am a school teacher for EC kids and my husband is recently retired from the wonder I am tired....second I have not had any genetic testing..because first off socialized medicine within the military system does not partake...and at this point what the hey? why bother? but I worry about my daughters...does knowing of a predisposition really help? this of course is a what do you think type question...I think of cancer as a rollercoaster ride of sorts sometimes you can see the end of the road and sometimes you can not....which leads to my last question at.. 37 with what will be by this week next time 2 surgeries behind me why do I meet so much resistance from the medical community to have a bilateralproph? I teach but my degree is in Psych....specifically womans studies...I am more than the sum of my parts..I am well adjusted, would not have reconstructive surgery and would be a ok minus my breasts as long as I no longer felt like a walking time bomb...which is exactly how I view myself...and no breasts no breast cancer...Has anyone else elected to have a double masectomy as preventive medicine?..My husband and my kids are all supportive in this ...what may be considered radical pursuit..I am more annoyed by the whole fact that they will not take my breasts and make vague references to we can look at that option...but lets do this first crap...In any event I think all of you to be brave and wish you all peace..recovery and healing.



  • inkblot
    inkblot Member Posts: 698 Member
    Hello flocolan:

    I'm so sorry to hear of your difficulties and I know it is a very stressful time.

    I'm unclear on a few things you mentioned and would like to share with you, what I have come to
    understand about bc.

    Firstly, I'm wondering what your dx was the first time, in '01? You mentioned that you refused chemo. Did you have radiation, post lumpectomy?

    The properties of your initial cancer, together with size and whether or not the tumor had spread beyond the breast, (DCIS, microcalcifications,invasive/regional spread) are determining factors in what types of treatment which were recommended. Did you have lymph nodes removed at the time of your lumpectomy? If so, what was the status? And was your tumor hormone positive or negative? Her/2neu?

    That chemo was recommended the first time is important but more importantly, did you get an additional opinion at that time to help in making your decision about chemo?

    Have you already had, in this occurence, any biopsy? What type of surgery are you expecting to have on Wednesday?

    Is the latest development in the same breast?
    All of those things are very important when considering treatment(s).

    Some women prefer to have the bilateral mast., prophylactially or just to put their mind at ease.
    Yet all the studies show the results to be the same with lumpectomy or mastectomy in most cases.
    Even the most well adjusted among us, I beleive, could still reasonably anticipate some sort of adjustment period follwing a bilateral mast. We are all more than the sum of our parts but giving those parts up isn't typically easy, whether it's a toe, or finger and especially in the case of most women I know who've had mast's. The breasts.
    Losing even one breast brings at least an intial challenge.

    You do know that no mastectomy can remove 100% of breast tissue? Even a radical. The cancer can still return, in the remaining tissue or anyplace in the chest wall. Mets are not something we want to think about but these are the facts as I understand them. You can go to: A reliable site with reliable info and lots of it, together with supporting documentation. There are also several great books available which can shed more light and provide additional insight.

    Many of us don't feel "sick" or tired prior to our diagnosis. I didn't feel tired in the least. I also had no pains or aches. Nothing which would indicate that I needed to see my doctor. Periods were regular and I felt just peachy. (I also discovered my tumor during a regular self breast exam)

    My tumor was relatively small at 1cm and a very few immature cells (micrometastasis)were found in one of the 3 lymph nodes removed at the time of my lumpectomy. Chemo was recommended to me due to the properties of my tumor. I was strongly Her/2neu positive and hormore neg. It gave me the best chance of survival.

    Re the genetic testing for your children: It depends upon their current ages. If they're still teens or younger, you wouldn't want to give them unnecessary fears about getting bc. However, you do need to tell them at some point about their family history, if they don't already know about their grandmother and great grandmother having had bc. It is certainly their right to know and it is my belief that the information gives a woman the information she needs in order to clue her doctor's in and speak at length with them about any options she needs to know about and to learn what's the best thing to be doing, so she can take the best care of herself, regarding how often she should have mammo's, etc.. However, if a young lady is, say, 12 or 14 years old, this is not something she should be worrying about. She should be hanging with her friends, involved in school activites and probably putting a lot of energy into her clothes, discovering her particular style, etc.. Kids at those ages are prone to judging their bodies harshly at times and how may her worrying about getting breast cancer effect her maturation process and effect her self image? To my knowledge, and I'm no expert, there is absolutely nothing which is typically done about young girls'
    possible genetic link, until they're older. I don't have daughters (a teen son) but if I did, I think I'd talk to a doctor or two and perhaps an oncology social worker at least, to help me decide how to best approach the subject and when. Just my thoughts about that aspect of your concerns. I'm sure there are others here with personal genetic testing experience who can help more in that regard.

    Wishing you a speedy surgical recovery and hope you'll visit here often. It's a great group and a lot of helpful information is shared.

    Love, light and laughter,
  • wingingit
    wingingit Member Posts: 48
    Hi, flocolan! Just wanted to point out that there was a pretty good discussion on genetic testing on this board on 8/22/03. You can get there (and other posts on this topic) by entering a search below for "genetic testing." I assume that if you do not have genetic testing available through the military, that you don't have access to genetic counselors either. A genetic counselor could be helpful in making decisions regarding prophylactic surgery. God bless you and yours.
  • Snookums
    Snookums Member Posts: 148
    wingingit said:

    Hi, flocolan! Just wanted to point out that there was a pretty good discussion on genetic testing on this board on 8/22/03. You can get there (and other posts on this topic) by entering a search below for "genetic testing." I assume that if you do not have genetic testing available through the military, that you don't have access to genetic counselors either. A genetic counselor could be helpful in making decisions regarding prophylactic surgery. God bless you and yours.

    Me, no family history, but I elected to have the bilat for about the same reasons. I read so many times form women on this site that had a lumpectomy or just a masectomy on the cancerous side and then, a recurrance in the same breast or the other side. I too, am not my breasts, my soul is what matters most to me. These are lumps of fat and tissue that do NOT make me who I am. I know me better than anyone else and I would have let worry about "what if" eat me up. My genetic tests came out negative but I did the bilat anyway! I am VERY glad I did. It will be one year in Jan of 04 and I would not change a thing. Blessings
  • cammie
    cammie Member Posts: 102
    It is your decision Flo. It is not a easy decision on what path you should take. For myself, my husbands mom had died of cancer when he was 15 years old. He always felt that she gave up in the end. I didn't want my children to think I didn't give it my all. My tumor was 3 cm. I chose a mascetomy and chemo. The most aggressive route. I wish now I had done bilateral mascetomy, only because I feel lopsided and worry all the time of getting another surgery. I have a young daughter, 13 years old. My doctor told me that she should have her first mammogram 10 years prior to my discovery of bc. So my daughter will have her first mammogram at the young age of 27. Hopefully by then they will have found a cure for this diease and it will be a matter of her getting a shot in the arm at worse.

    You sound very matter of fact. Get all your options then talk with the family, then make your decision. I have told my husband, I don't know if I would do chemo again if it did indeed come back, but then I look at my kids, and who knows, I want to see grandbabies someday - and I will.

    God Bless you Flo - I will be thinking of you.