Questions for those who have considered prophylactic mastectomy

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  • CAZ
    CAZ Member Posts: 678
    edited October 2008

    Lois and Jean,

    My BS strongly discouraged nipple-sparing.  He felt there was enough breast tissue remaining with the nipples to make it unwise.  He said you could irradiate them, but radiation might devitalize the nipple tissue and you'd loose them anyway.  To me, losing the nipples was the hardest thing emotionally.  However, not wearing a bra for the last few months has been sweet.

    I felt the closer I got to surgery, the more relieved I was about getting on with my life.

    I spent a lot of pre-surgical time making comfort food to freeze.  I cleaned windows so I had a nice view post-op.  Keep busy.  Take advantage of the down time.

    I'll be around if you have questions.

    CarolAZ)

  • Sunflower4444
    Sunflower4444 Member Posts: 8
    edited October 2008

    Lois,

    Thanks for your reply and prayers.  I will pray for your surgery on Nov. the 18 (just 6 days after mine).  We can compare notes when we are well enough to get back to the computer.

    Sunflower (Margaret)

  • psalmist
    psalmist Member Posts: 214
    edited October 2008

    Ladies,

    I have been traveling out of the country and am just getting back on the boards.  Just to reaffirm what most of you are saying, my BPM was the best decision I could have made and I have never had one minute of regret.   I did mourn the loss of my breasts for a short while just prior to the surgery, mostly because of all the unknowns.  Now that I am on well on my way to the other side of this, I can say my experience has been nothing but positive - even with a few minor complications - and yes, some initial pain from the implants.  As my dad used to say, "This too shall pass."  And it did.  All is well now!  My husband even likes my hard as a rock "foobs" which are still in process.  Still have several fills to go, but I should be finished with those by the end of November and then I have to wait three months for the exchange.  

    If you are worried about getting cancer and are being advised to do PBM, just think of this:  because of your PBM, your photo most likely will not end up on a pink cardboard form in a park somewhere to commemorate another woman who has died of this terrible disease.   To me, that was enough to make my decision and never look back.  My heart goes out to all the women who have fought this disease and who didn't win.  While traveling I saw a sea of pink cardboard stick-figures in a downtown and wanted to cry for all those women.  I also felt humbled and grateful that I won't be one of them.  

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2008

    Psalmist - Thanks for the encouraging words!

  • attorrance
    attorrance Member Posts: 5
    edited October 2008

    HI I'm new here, and am wondering if anyone can help shed some light on this:

    I had a breast reduction done because I was very large.  My surgery went great.  I went back for my 10 day follow up and was told by my PS that pathology had discovered LCIS in my left breast. He sent me to a General surgeon for his thoughts.  The GS told me to just monitor it closely.  I wanted a Oncologist to review my file.  I went yesterday and he told me that the LCIS was so small there wasn't a size to measure and therefore no grade to be given. However since this discovery was accidental we don't know what was left behind.  He stated I could have a PBM it was a matter of quality of life.  Can I live with knowing I am a higher risk for developing breast cancer.  I asked him if I could take any kind of treatment and he said no because I don't have cancer I have pre-cancer.  Is this what LCIS is and has anyone else had this kind of experience?  I'm scared and want to make the right decision as to what to do.  I have to see my PS Dec for my 3 month check up and if I want a PBM I have to tell him then.  I am only 45 and I have 3 children to look after.  If you have LCIS are you at a greater risk for ovarian cancers?  I have had no  testing for any other cancers and wasn't offered anything other than monitoring or PBM is this all there is?

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2008

    Attorance: As I understand it, essentially LCIS puts you at about a 30% risk of BC over your life time. I don't know of any connection to ovarian cancer unless you are also BRCA positive. There are three suggested methods for dealing with it:

    1. Close monitoring - which for my BS included yearly bilateral dx mammograms (digital), yearly bilateral dx MRI (on the opposite 6 months) and twice a year professional breast exams (on the opposite quarters). Thereby doing something to check every three months.

    2. Same as number 1, but adding tamoxofin.

    3. Bilateral prophylactic mastectomy.

    There is no reason you need to hurry to make a decision, this is something that is there and should be watched. Not something that is telling them that a crisis is on hand. The direction you chose to go depends on your personal life and choices. For me, option 3 is the way to go. I can't live w/ the constant monitoring and worry. I am 54 and married and do not have any more children to nurse, and I have a special needs child that already takes a lot of my time and worry. I don't have what it takes to do the every three months monitoring. ANd I can live w/ my decision for a BPM w/ reconstruction. I am scheduled for surgery in December. But many (if not most) women chose to monitor the situation closely. I would suggest you meet w/ an oncologist (or two or three) and go over your particular circumstances. Good luck my dear. We are all here whenever you need to ask more questions. - Jean

  • attorrance
    attorrance Member Posts: 5
    edited October 2008

    My kids mom (Jean),

    Thanks soooo much for responding to me.  I have already had a reduction and am not afraid of more surgery except that I don't know enough about BPM.  Can they save the nipple how come for the reduction I was sent home the same day but with this I have a 4-5 day stay in the hospital.  I would like to have the reconstruction done at the same time and according to my PS he said it can be done but now I wonder about how they enter the breast will they go through the old scares (which aren't that old just 1 month) can they keep my nipple?  I'm scared of not doing anything but monitoring.  As I went through this site I kept hearing of BC being missed through monitoring.  I can't stop thinking about what if I wait I can have a mammy done until 2009 Sept.  What if this kind of cancer is fast growing that's 11 month it will have to grow.  My GS, Regular Doc, PS and Oncologist seem to differ in what to do.  They tell me it's quality of life.  Why can't they tell me what's best?  I asked my Oncologist about tamoxofin and he said not needed.  This doesn't jive with how everyone in the US are treating the same thing.  Is Canada behind in breast cancer treatment?  I'm sure you're wondering what's the question but I guess I just need someone who has experienced the same thing as me to talk with.  Thanks for being here.

    Annette 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2008

    Attorance-----I was given the same 3 options as Jean was--those are pretty standard for LCIS now.  If your oncologist said there is nothing you can do, I would get a 2nd opinion from another oncologist, because there is. You can choose to do any of the 3 options.  I chose # 2--I have high risk surveillance with mammos alternating every 6 months with MRIs and breast exams on opposite schedule as described in option # 1 AND I just finished my 5 years of tamoxifen 2 weeks ago. So as you can see, I've been dealing with this a very long time.  There is NO rush with LCIS as it is a non-invasive bc ( whether or not LCIS is "cancer" or just a marker for higher risk of bc in the future is a topic of great controversy even among the medical community--my  oncologist feels it is cancer, just a non-invasive type and needs to be watched very closely and my other physicians agree (pcp, bs, gyn).  Don't let anyone rush you into a decision. Take all the time you need, but make sure to make your decisions out of knowledge, not fear.

      The LCIS itself does not put you at higher risk for ovarian cancer; but family history  of bc in a primary relative (mother, sister or daughter) or invasive bc does double the risk of ovca. The exact risk with LCIS is also  somewhat controversial, but may be in the neighborhood of 40 to 50% (8 to 10x the base risk of 5%), but even so, many  with LCIS never develop invasive bc. I was already rather closely watched due to my mom's bc, so I wanted to do something proactive to try and prevent an invasive bc in my future. so I chose  to take tamoxifen and fortunately, I've tolerated it pretty well with mild SEs.  Good luck with whatever choice you make. Feel free to PM me if you want to talk.

    Anne

  • attorrance
    attorrance Member Posts: 5
    edited November 2008

    Thanks Anne,

    This site has been very comforting to me.  I don't feel so alone.  My family is great and very supportive but none the less it is my decision as to what to do and they support me with whatever but..... I don't know what to do.  I haven't been told to do anything other than the once a year monitoring.  I'm wondering why??????  I live in Canada and for all I know the only place to see an Oncologist is at the cancer center where I went and saw the first guy.  How can I ask for another opinion?  I wonder why I was told I couldn't have tamoxifen?  Could it be because my LCIS is so small they couldn't measure it or is that what LCIS is?

     Annette

  • attorrance
    attorrance Member Posts: 5
    edited November 2008

    There is one more thing I want to know, does all BPM and reconstruction remove the nipple and then later you have reconstruction of the nipple?  Can't they do a BPM and save the nipple?  Does anybody know the answer to this?

    Annette 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2008

    Annette-----yes, there are nipple sparing mastectomies.  Could you get a referral from your primary physician for another oncologist? ( I don't know how it works in Canada, but in the US most insurance companies will pay for a 2nd opinion).  I'm not sure why they said you "couldn't have tamoxifen" unless you have some  other medical reason why you cannot take it.  It has been shown to decrease the risk of an invasive bc up to 50% which is pretty significant. The amount of LCIS that is found doesn't matter because LCIS puts both breasts at risk (it is most often found to be multicentric, multifocal and bilateral, meaning it could be everywhere---that doesn't change your risk level; it's the same regardless of how many spots of LCIS you have).

    Anne

  • leaf
    leaf Member Posts: 8,188
    edited November 2008

    Hi Annette.  I also have LCIS + ALH (and nothing worse.)  I live in the US, and my onc follows me with biannual clinical exams and yearly mammograms, and that's it.  My breast surgeon said she 'doesn't want to do any more surgery on me' (after my local excision).  I was on tamoxifen until last month (because of another complicated medical condition.) 

    I went for a 2nd opinion (July 2007) at a major, NCI-certified center, and they said for (LCIS and nothing worse) patients, their normal routine is to do biannual clinical exams, yearly mammograms, and they are offered tamoxifen.This probably is different if you are also BRCA positive. I don't know what happens if you have a strong family history + LCIS. (A strong family history may include things like multiple first- and second-degree relatives with breast cancer, especially if they were diagnosed pre-menopausally.)

    So different places/and or physicians do differ.  I got a newspaper article from a friend in England, and apparently they routinely do mammograms every other year (I don't know if this is for high risk people too), and one woman got  newspaper coverage for her PBMs for her BRCA positive status.  (BRCA women have a much higher risk of breast cancer than LCIS women,  or at least LCIS women with a weak family history.) It sounds like LCIS women in England just get closely monitored.

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited November 2008

    Annette - It has been my experience that I can get a number of different opinions from my doctors, which is why I suggested the 1st, 2nd and possibly more opinions. I can tell you that my oncologist does not like tamoxofin for LCIS. He feels that it increases the risk for other problems on top of the risk associated w/ LCIS, but that is his approach. Also, I know that some doctors are doing nipple sparing BPM. However, in my case, my nipple area is riddled w/ calcifications and an area of concern for future bc. So that is not an option for me. I hope this helps. I know it is upsetting to find out you have this diagnosis. I can only tell you that this web site has helped me tremendously and that there are lots of other ladies dealing with the same thing you are. Unfortunately I don't know how medicine works in Canada. Hopefully other women from there can fill in more of the blanks for you. Good luck. - Jean

  • psalmist
    psalmist Member Posts: 214
    edited November 2008

    Annette,

    Like Jean, Anne, and Leaf, I was diagnosed with LCIS.  I was told immediately that it increased my chance of developing BC by 30% and that with my dense tissue, multiple previous biopsies, family history, fibrocystic disease, and microcalcifications that my risk was probably even greater than that.  They gave me the option of BPM, close monitoring (every 6 month mammos, annual follow ups with an oncologist and a breast surgeon), and Tamoxifen.  I did that for 3 years and the Tamoxifen was difficult for me to tolerate.   I finally decided on the BPM last summer because new microcalcifications continued to show up on mammos.  My doctors told me that LCIS affects both breasts equally whether it is present in both or not.  It increases the risk not just of the LCIS becoming invasive, but of DCIS as well.  It ended up that when they took my breasts, there was a tiny cancer (IDC) in the right side (the LCIS was in the left).  My doctor would not do nipple sparing - he only did skin sparing.  He said (and the onc agreed) that there is too much cancer risk associated with the nipple. They left as much skin as they could, however.  My recon is proceeding very well.

    LCIS doesn't end up in mastectomy for everyone nor does it end up in cancer for everyone.  Weigh your other risks, if any, and get more opinions from doctors.  Close monitoring has proven effective for many women -- I just wasn't one of them.  I had too many other risk factors and too many changes in my breasts to continue the monitoring.

     

  • Sunflower4444
    Sunflower4444 Member Posts: 8
    edited November 2008

    Hi Lois, the Psalmist and others,

    I had my prophylactic mastectomy Wednesday, Nov. 12th.   An expander was put in.  I am doing well and the doctor discharged me last night.  During my surgery, my plastic surgeon gave me a pain pump ("On-Q" pump) that gives continuous pain relief to the area of the incision.  The tubing for the pump goes into my skin underneath my mummy-like chest bandages, just like my drain tubing.  The pain pump is very helpful and I have only been taking tylenol and a 1/2 of a 500 mg vicodin periodically during the day.  Right now, I am managind with only 2 extra strength tylenols.  I definitely recommend this pain pump.  I wear it in a little black fanny pack around my waist.  The nurses taught me how to work my drain and that is going well too.  Ever since I pinned the drain to my chest bandages, it has not been in the way too much. I hope that Lois can get a pain pump for her surgery on the 18th.    I am rather sore and I try not to do much with my arm on the incision side.  I am supposed to lay low so that there is not excessive fluid buildup in my drain.  I guess too much fluid can lead to more scar tissue. 

    In 4 months or so, I will have saline implants put in on both sides.  My current saline implant was put in despite my radiated skin and it tends to have a capsular contraction every 10-12 years.  This will be my 3rd implant put in on my radiated right side.  My plastic surgeon said that I might develop a capsular contraction on the left side too at some point but that this would take a lot more time to appear because the skin was not radiated there.  It will definitely be harder to get out of bed when both sides are operated on.  Perhaps rolling will work.  One of my friends who had a doulbe mastectomy said she slept in a recliner chair to solve the getting up problem.

    In any case, my pain has not been too bad.  I will be praying for Lois and her upcoming surgery.

    Sunflower

  • Suze
    Suze Member Posts: 186
    edited November 2008
    Hi Lucky I had a prophylactic ooph earlier in the year and 6 months later, a PBM. To answer your qs: 1. I arrived at the decision pretty haphazardly after being utterly consumed and overwhelmed with info from many sources: genetic counsellor, GP, mostly the internet, if I am honest. I sat on the fence for ages re the PBM (ooph was a no brainer for me on account of the lack of reliable testing for o/ca, and given my family history) and was actually going to see a bs for a referral for an MRI when she brought up the option again. I think I was secretly relieved when she did, as I was pretty much there already in my head but thought people would think I was crazy/taking things too far 2. It probably took me about a month to decide for sure, once I had started to really take seriously the idea that this might be a sensible thing to do. But that was round 2 of decision making, really, since in Round 1 (which took about 6 months, probably) I had decided firmly 'no'. I had been considering the ooph while I was researching options and waiting for test results for probably about a year.3. My family (parents) were initially utterly opposed and aghast, but now are so relieved I did it. They had conflicting advice from health profs caring for my mother who had both breast and o/ca that my risk was probably low, and that I didn't need to worry. Unfortunately these were not people with a lot of experience re genetic cancers. Once my parents found out more about genetic cancers they were horrified that they hadn't taken it seriously and so supportive of my decision. My husband always supported whatever I wanted to do, but has since told me he really wanted me to do both surgeries. Mostly my friends didn't know enough to have an opinion about the medical side of things and supported me whichever way, aside from one, married to a pathologist, who was really anti on account of HIS views. He has since apologised to me (path report showed pre-cancerous stuff) and told me that now he understands the whole picture, he would have done exactly the same thing in my shoes. I have chosen unconditional forgiveness (that sound so pious and I don't mean it to, but it best describes the stance i have chosen) towards those who didn't understand/opposed what I was doing, because it's such a confusing area, nobody really knows which wayis up. And the relationships are worth so much more than this. 6. Yes, I am very pleased I did it. My mother has had breast and o/ca and done well, but she will die from one or the other, in the not distant future. I couldn't imagine how I would cope with worrying about my own risk, on top of caring for and about her. Plus my h is type 1 diabetic and 10 years old than me, so I just can't mess around, having young kids and all. I have to be able to make a living for all of us later down the line, and want to be around! It has been easier and harder than I ever expected, easier in ways I didn't expect it to, harder in ways I didn't think would matter. It is a big deal and a long process, esp with reconstruction. And it's HUGELY disruptive to day to day life.  You really do need to make time for it. It's not something you just do, and get on with things. But in balance, yes, I'd do it again in a heartbeat. Esp given that they found Lobular Carcinoma in Situ when they went in, and I really didn't want to spend my life waiting for the next MRI/Mammo appt. In the end, for me, I just had to close my eyes and dive in and have some faith that I would come out the other end in some way or another. I do know I will never be the same again - but in a good way. It has taught me so much about life and pain and what really matters. And taught me so much, too, about how it is to be cared for and cared about. I grew up in a family where those two things were pretty screwy, so to have had the love and care I have from my H, and also from my parents, now they have softened and grown so much more, is a wonderful blessing and also lesson.  I can't help but think a lot about how I will probably have to care for him later in life, and to do that, you need to know how it is to be cared for. Well, now I do. I really do. And it's a total gift.  
  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited November 2008

    Sunflower - I just wanted to send a quick note to let you know that we are all thinking of you and wishing for a quick and complete recovery! I go in for the a BM and expander implant in a couple of weeks. And my doctor has also recommended the on-Q, she says it is the way to go. I am glad that it is helping you. When you say lay low, how low do you need to lay and for how long? I am a pretty active lady, so I think that will be the most difficult for me! Take care! - Jean

  • loracc
    loracc Member Posts: 7
    edited November 2008

    I was diagnosed with LCIS almost twenty years ago.  My doctor, a highly respected breast surgeon in DC, was firm on her recommendation that surveillance was the appropriate choice for women with LCIS.  I've seen confirmation of this on reputable web sites like the National Cancer Institute's and the American Cancer Society's.

    I did wonder if bilateral mastectomy made sense, but rejected it for several reasons.  This surgery reduces risk for breast cancer by 90%, but you can still get breast cancer.  It seemed strange to me that women with invasive cancer could get a lumpectomy, but for a precancerous condition the recommendation was bilateral mastectomy.  LCIS is not cancer, but a warning sign that cancer may develop in either breast.  That doesn't mean it's going to happen, and so far it hasn't happened to me.

    But it's scary to think that you're at risk for this disease.  My solution was to look into what lifestyle changes I could make to improve my odds of not getting breast cancer.  Getting regular exercise reduces risk by around 30%.  Limiting alcohol consumption and keeping weight under control also reduce risk.  A healthful diet rich in fruits, vegetables, and whole grains may also play a role in reducing risk.  (For more details:  www.ReduceBreastCancerRisk.com)

    Doctors have an obligation to tell you all of the options that are available to deal with a condition like LCIS.  That does not mean the most drastic is the best.  Other risk factors need to be considered, but it is important to keep in mind that LCIS is a sign that your risk is higher than average.  It is not a sign that you are destined to get breast cancer.

    Attorance:  Tamoxifen or Evista are an option for women who have not gone through menopause.  They have side effects, but were found to reduce breast cancer risk by around 50%.  Bilateral mastectomy reduces risk by 90%, but that has adverse effects, too.    

    By comparison, regular exercise reduces risk by 30%, and no one knows how much you might reduce your risk if you adopted all the lifestyle changes known to lower it.  If you have no other risk factors, making lifestyle changes is something to consider.  

  • Misty3
    Misty3 Member Posts: 154
    edited November 2008

    loracc, I hope to follow in your footsteps of a long, cancer free life with LCIS.

    May I ask if you chose to take tamoxifen or some other anti-estrogen in addition to life style changes?  I have chose aggressive lifestyle changes and declined tamoxifen--not comfortable with the side effects.

    Misty

  • psalmist
    psalmist Member Posts: 214
    edited November 2008

    Sunflower -

    Glad you came through surgery fine and are recovering with comfort.  Your pain pump sounds like a great invention!  I would have loved something like that.  Wishing you well - good to hear from you.

    Psalmist

  • loracc
    loracc Member Posts: 7
    edited November 2008

    Misty,

    I never took Tamoxifen or any other anti-estrogen.  It wasn't offered until several years after I was diagnosed.  I'm with you on declining because of the side effects.  My breast surgeon recently told me that because of the side effects, she gets a second reading of the pathology slides to confirm that it's LCIS before prescribing Tamoxifen.  Apparently, LCIS is somewhat difficult to identify.  

    I've been following the scientific literature to keep up with the thinking on reducing breast cancer risk and recurrence through lifestyle.  I've put the information together on the web site I mentioned in my earlier post -- www.ReduceBreastCancerRisk.com.  I'd love to hear what you're doing and how you went about making changes to your lifestyle.  If you click on "Contact Us," the e-mail goes to me.   

    I hope you do follow in my footsteps and have a long cancer-free life.  Most women who are diagnosed with LCIS do. 

    Best Wishes,

    Carol

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2008

    Carol----I was diagnosed with LCIS  Sept 2003 and have just finished my 5 years of tamoxifen. My oncologist left the decision to take tamox up to me, but considering my high risk is elevated even more by family history (mom had ILC--good news--she's a 22 year survivor) I chose to be proactive and take tamox. I  have also increased my exercise, am eating a more healthy diet, (joined Weight Watchers and lost about 14 pounds), don't smoke, rarely drink, and am very closely monitored by mammos alternating with MRIs every 6 months and frequent breast exams.  I will be starting on Evista soon for further prevention of invasive bc. Just a note: tamox is for BOTH pre and post meno, Evista is ONLY for post meno. I'm  so excited to hear  20 years with LCIS and you are still doing well with no invasive bc!!! That's awesome---- that gives me so much hope---thank-you!

    Anne

  • loracc
    loracc Member Posts: 7
    edited November 2008

    Anne,

    It sounds like you're doing great.  Tamoxifen was important for you because of your family history.  I'm surprised, though, that you'll also be taking Evista.  Tamoxifen is taken only for five years, and any longer is not necessary -- the benefit continues after you stop taking it.  I thought that Tamoxifen and Evista had the same effect, and that women took one or the other.  The following Q & A on the National Cancer Institute's web site supports this: 

    "Why won't the women who took tamoxifen in STAR now take five years of raloxifene?
    There is no evidence that taking more than five years of either drug will further reduce a woman's chance of developing breast cancer."    http://www.cancer.gov/cancertopics/factsheet/STARresultsQandA   

    I'm so glad I shared my story.  I remember how unnerving it was to get the diagnosis and have uncertainty about what my future would be.  It's nice to be able to serve as a reminder that most women who get LCIS never go on to develop breast cancer. 

    Best wishes to both you and your mother.  Stay well!

    Carol

  • lopalermo
    lopalermo Member Posts: 56
    edited November 2008

    Hi Sunflower,

    Thank you for your prayers.  I had my prophylactic double mastectomy Nov. 18.  I couldn't believe they wanted me out of the hospitol 24 hrs. after surgery but I told them I was not leaving until my pain was under control.  Part of the problem stemmed from not knowing that I could push the pain pump button every 10 mins and then when it finally sunk in to do it and that I could- then I either couldn't reach it or I couldn't find it.  Good news was I left the 2nd day and finally had the pain under control with vicodin and an IV bag of motirn.  I've been good since I left the hospitol.  Got two drains out this morning and still have 2 more left in.  They should come out next week.  What an awesome God we have and boy have I sure been blessed by Him- even after reading everything on the internet and seeing numerous doctors who thought that maybe my idea of a prophylactic mastectomy was a little agressive but an option regarding my diagnosis of LCIS I still felt lead to have it done.  God had given me many confirmations to go ahead on my deicison but the question is always still on your mind but today I KNOW I made the right decision.  The surgeon said my whole pathology report was not in yet but I had made the right decision especially after they found some DCIS in the pathology too!  Thank you Lord for giving me the courage to stay on course- I have been blessed- no radiation- no chemo.  Of course, I do know the decision I made is not for everyone by any means.  The many women who are diagnosed with LCIS and never have any more problems are tremendously blesssed.  I love seeing their stories because it's nice to know there are other options and not everyone is the same.

    So Sunflower- how are you doing? What phase are you in for reconstruction?  I may have my first expansion fill delayed a week since they also did the nipple sparing technique on me and they want to make sure the nipples will be ok first.  I'm excited and positive about the outcome and have definitely learned that God is in control- not me.

    Have a great Thanksgiving-

    Lois

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited November 2008

    Lois - I will be following in your path almost exactly one month later. Here's wishing for no more pain, long showers and rapid drain removals. I too made the choice you did for the reasons you did, but totally realize that each of us has to follow her own path. Best wishes for all B9 results to the ladies chosing close monitoring, more power to you. Now I just need to hold up for the next few weeks until my surgery. This web site has been totally awesome for me, I am not sure what I would have done w/o it. - Jean

  • lopalermo
    lopalermo Member Posts: 56
    edited November 2008

    Hi Jean,

    Hope you are having a wonderful Thanksgiving.  Also, just to let you know I have not regretted nor have I missed my breasts for 1 second.  I know they do not define who I am but God does.  We are and always will be His beautiful children.  I really had no pain having the two drains removed- I was just so excited to get them out. Cheers to long showers, and new perky ones.   Keep me posted on how you are doing.

    Lois 

  • Sunflower4444
    Sunflower4444 Member Posts: 8
    edited November 2008

    Hi Lois, the Psalmist, Jean and others,

    Sorry it took me this long to reply.  Many thanks for all your prayers.  I am so grateful for this forum because everyone was right about not trusting the monitoring.  You all helped me greatly.   Thank you.  Thank you.  I finally got my pathology report back after almost 2 weeks of waiting and it revealed a small (6 ml ) infiltrating ductal stage one cancer near the area where they had done my 2 biopsies last July.  If I had gone with the monitoring plan, this cancer would have become much larger before it ever showed up on any tests.  Neither the 2 digital mammograms, the MRI nor the ultrasound I had, revealed this cancer.  Doctors thought that I only had LCIS.  I have always had dense breast tissue that is difficult to monitor.  I have a close friend that had the exact same thing happen to her last year.  I want to warn everyone that the monitoring plan is not very trustworthy for people with dense breasts. 

    I also thank the Lord that I had my nipple removed because the cancer was found right in the nipple area in my case. 

    My surgery was Nov. 12 and I became drain free Nov. 24.  That was a relief.  The pain pump I received after the surgery helped greatly but it only lasted for almost 4 days.  Then I needed more vicodin.  The pump really helped me go home without excessive pain on the day after my surgery.  It also helped me sleep better.  I will ask for one when I have my 2 implants put in in about 4 months.

    I had my first reconstructive "fill" on 11/26.  I barely felt anything due to a local anesthetic, but the needle with the saline solution was kind of impressive.  Later that night I did experience pain and took extra strength tylenol.  I was so excited to find that I now have a little bit of shape.  I found that I can put on a bra and it will no longer fly up because there was nothing to hold it down.  I can already see the outline of things to come.  I am so thankful. 

    May the Lord bless each one of you in your individual situation.

    Sunflower

  • Sunflower4444
    Sunflower4444 Member Posts: 8
    edited November 2008

    Hello again!

    I forgot to add that my surgeon highly recommends the 5 years of hormone therapy.  I will give it a try but I am concerned about my ability to live with the side effects.  I will keep you posted.  I was hoping that my mastectomy would enable me to avoid having to take medications.  Has anyone taken these medications and not had much of a problem?

    Thanks,

    Sunflower

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited November 2008

    Sunflower - Thank goodness you went the BM route! I too have very dense breasts which was one of the reasons my oncologist recommended BM's for me as well. I did not realize that taking hormones would be necessary after the BM's - is it because they found the invasive BC when they did the mastectomies? And I didn't realize that the drains stayed in for so long. My surgery is scheduled for December 16, I guess I may still have drains on Christmas Day. That would be a bummer, but I guess I will just deal w/ what ever. Best of luck w/ your healing and thanks for writing in. - Jean

  • beergirl
    beergirl Member Posts: 334
    edited November 2008

    Sunflower, I had a bilat 3/26/08 and have been taking femara since April. I have had almost no side effects that I can feel.  My onc is concerned now because I have had osteoporosis for several years - small frame and thyroid meds since I was a child contributed. She is thinking about switching me to another AI. I also have been told five years...or maybe longer. Both my oncs have questioned my lack of SEs from femara and then just pronounced me one of the lucky ones.  It is possible, but I don't know how or why.

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