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2013 Sister Warriors

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  • new2bc
    new2bc Member Posts: 252
    edited January 2013
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    momof5inva,

    I had double mastectomy last week because my biopsy showed ILC. My pathology report after surgery shows 3 more different cancers, IDC, DCIS, and pagets in the left breast with sizes of 5mm, 4mm, and 9mm scattered in different areas. My lymph nodes (2) from the left arm were clear. Also the sentinel biopsy were clear. My breast surgeon before the pathology report told me that if my lymph nodes are clear, I may not need radiation or chemo. But after all these surprises, she was not sure. I will meet with an oncologist next week.

    As far as surgery, I was numb in the breast area for a few days. I only took pain medication once. I felt more discomfort after a few days, feeling of tightness in the area and limes under my armpit. The lime feeling is gone but I still feel like someone is pulling my breasts with a rope. I can tolerate this and do not want to take pain medication since it causes constipation (I have rectocele).  

    I was diagnosed because my mamogram showed calcifications. I did not have any lumps. My MRI only showed 2 different cancers.     

  • LuvSnow
    LuvSnow Member Posts: 138
    edited February 2013
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    Hi new2bc,

    First, I am sorry :(  such a sucky thing to happen to us.  But thank you so much for sharing your experience.  I called my BS, and he assured me they would do a thorough pathology on both breasts.  I just don't trust these gals, and if the BC hid from mammos and U/S, I just worry about what else is in there.  And, the breast that has the cancer is not the breast that I had atypical ductal hyperplasia in (and lumpectomy) years ago, so I am curious as to what they will find there.

    It sounds like you are recoving well.  I have read from a lot of people that they don't have as much "pain" as soreness.  I will be getting TE, so I am not sure how they factor into the equation. Are you able to get in and out of bed ok?  That is my biggest fear, manuevering to get in and out of bed without pulling anything.   My DH will be around the first few days,  I am sure, and I do have kids that could help, but hate asking them.

  • new2bc
    new2bc Member Posts: 252
    edited January 2013
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    Hi momof5inva,

    Yes, I can get out of bed and walk. I feel tired most of the time. Today I feel more tired since my period started. Now I am bleeding in 3 places (2 drains). Try to keep items you need at lower level since you can not raise your arm. I did not have reconstruction done at the time of surgery. I hate asking people for help too but this is the only time I am not ashamed to ask. Good luck with your surgery and don't worry too much!

  • LuvSnow
    LuvSnow Member Posts: 138
    edited February 2013
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    new2bc,

    Ugh...aunt flo always arrives when you don't need her.  I had a hysterectomy 6.5 years ago, and don't miss that at all.  They left my ovaries, so the only reason knew it was "that time of the month" is the girls would hurt.  Guess in a few weeks I won't be able to tell.  I used to call it my "phantom period".  I am pretty active, work, paint and refinish furniture, so the worst part about the surgery will feeling like I am not getting work done...that and waiting for pathology.  I just want to get past that part.

    I am glad that you are able to get up and around well.  And I bet you are tired.  Your body has been through so much...and your mind.  The entire thing is really mentally exhausting.  Rest up!

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited January 2013
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    Melissa, thank you for sharing your story!  It is helpful to hear someone who has been through all that we're about to go through, made it on the other end.  

    So I had my BRCA 1&2 results--negative.  Dr. wants to do BART test too,  but my insurance won't pay for it.  I think if people can get their insurance to (help) pay for genetic tests, it can answer questions for some.  I guess I was surprised mine came out negative, given the cancer history on both family sides, including multiple breast cancers.  I was definitely going to get a dbl mast. if came back negative.  Now, I don't know.  I thought that was going to be the right course for me, but am questioning whether I am doing myself much better by doing that, or if I should just leave the healthy breast on.  Mtg. w/second surgeon tomorrow to get his recommendation.

    Glad you're doing so well post surgery new2bc!

  • Rynie83
    Rynie83 Member Posts: 1
    edited January 2013
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    Hi all. I'm a 29 year old that's just been diagnosed. I had my lumpetomy surgery on my 29th birthday (cruel i know!) nearly 5 weeks ago. They removed the 2cm cancer along with 3 lymph nodes. Out of those lymph nodes only 1, the first 1 was found to have very tiny tiny mircosopic cancer cells and the other 2 were all clear.

    My husband & I havent had any kids yet so we were advised to do IVF before chemo as chemo can put me into early menopause. So we've just finished one round of IVF and have frozen 21 little embiros ready for us when im finished my treatment. So now that it's done i'm just about to start my chemo treatment. Which i've been told will be about 4 or 5 rounds. Then i've decided that i want both my breasts removed after chemo and get implants. I actually decided this the day i found out and havent changed my mind.

    I still can't believe this has all happened. I must say i've had the worst birthday & christmas ever. I think i'm still in the acceptance stage and i'm still so extreamly terrified of the future. I'm so scared it'll come back. I've never been this scared in my life. Is there anyone out there that is in a similar situation as me and wants to go through this together?

  • Cuetang
    Cuetang Member Posts: 173
    edited January 2013
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    ReneeinOH -- good to hear you are getting a second opinion. I met with a second surgeon and totally liked how much info he covered with me and how detailed he was in assessing my situation. Bad thing is that despite a breast MRI showing no issues with lymph nodes, he found one swollen one on my cancer side, so I had it biopsied today. Back to the horrible waiting game for me -- it'll decide so many things for me, such as chemo and/or radiation.



    Rynie83-- I'm 33 years old and was diagnosed earlier this month. Looks like you're a couple steps ahead of me. My husband and I are planning to look into IVF as an just in case thing depending on if I end up getting chemo or not. I totally share your fears -- there are so many decades ahead of us and BC has scared the crap out of me regarding that. Feel free to PM me if you ever want to chat.

  • LuvSnow
    LuvSnow Member Posts: 138
    edited February 2013
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    Hi ReneeinOH,



    I was tested last June and was negative for BRCA1/2. However, I was told by several doctors and my breast surgeon, that they believe that is not the only gene(s) for hereditary BC, just the only one they have identified thus far. Given the fact that my mother had BC at 28, her mom in her 40s, and now me at 44, I am inclined to believe them.



    Making treatment decisions can be very hard :(

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited January 2013
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    Yeah, first BS was saying I should get a dbl mast. for just that reasoning momof5inva.  

  • pacools
    pacools Member Posts: 35
    edited January 2013
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    Lemon68 I am thinking of you today and sending positive energy your way.  The SNB will certainly make the next decisions more meaningful.  Happy thoughts to you.

  • LuvSnow
    LuvSnow Member Posts: 138
    edited February 2013
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    Lemon68....thinking of you as well! Keep us posted!

    Tomorrow I meet with the PS.  I hope I have a date for my BMX by next week.  I want to get this over and have the final pathology completed.  Still can't believe I have cancer SMH.  I mean, I guess I can...but it is surreal, for sure!

  • slv58
    slv58 Member Posts: 486
    edited January 2013
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    Hi sisters, had my first chemo yesterday, the picc line was the worst part for me, I knew I would suck out. I was doing really well until he told me they were going to have to try again as my vein kept moving! That's when the tears started. They were so good with me, the male student was wiping my runny mascara-I can chuckle at that now! After that, chemo was a breeze. I'm keeping up on my nausea pills and so far, so good. I even managed to give mysel the neulasta shot without too much drama LOL hope everyone is doing well and having a good evening,Shari

  • lemon68
    lemon68 Member Posts: 301
    edited January 2013
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    Thank you all for your well wishes. Had the SNB today.. the 2 shots in the lumpetomy site were horribly painful but not nearly as bad as the wire excirision from last time. I spent the whole day at hospital due the pain, I am fairly tough but this hurts! Left pumped up on whatever they put in IV and 2 percocets. Was nauseous not sure if from the perks or being completely put out for the surgery. I have only taken 1 since at 6 not sure if that or the ice is helping. Wondering how I will sleep comfortably tonight.

    I asked BS if the nodes were bad and he could tell would he just take them all today..he said yes and he only ended up taking 3-4 told my DG they were clumped togethor, all nodes inflamed but he said that is due to the constant invasive procedures of the past month and a half. Hope that is true. Thought good sign he didnt take more. Told me to call on Tuesday for results. I am sure I am just going to torture myself until then.. :( Anyone has any SNB experiences they can share with me that might help?

    again, thank you all. xoxo

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited January 2013
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    Wishing you a good night's sleep lemon68, and good results from your SNB.  I know it's hard to wait.  From what little I know, I do believe it's a good sign that they took that small amount.  I'm thinking positive thoughts for you!

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited January 2013
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    Lemon68 I had my SN biopsy a little over week ago. It wasn't bad at all. But now I'm more sore then right after the procedure. I have taken more pain pills the last few days. But I think that's from returning to work and wearing a bra which cuts right across my two inch incesion. I'm scheduled for Double mastectomy on the 7th with tissue expanders. Hopefully I won't need radiation but they have already said chemo a given. We all just need to hang in there it's bound to get better!

  • pacools
    pacools Member Posts: 35
    edited January 2013
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    Good morning lemon68, I hope you are feeling better today.  We are here for you sending happy thoughts and practicing for the happy dance on Tuesday :).

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited January 2013
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    Wow ladies.  Not everyone is checking in, but I count 23 so far in our "club:" dimples68; RMlulu; lemon68; nanna5; madison08; sherri89117; slv58; humanityisbeautiful; Adavisart; momof5inva; Cuetang; Janipani (Janice); OhhKay (K); momtotenkids; Kimberly1965; mermaidia; Speedy4; Soteria205 (Paula); melissa119; pacools; new2bc; Rynie83; ReneeinOH

    How is everyone doing?

  • lemon68
    lemon68 Member Posts: 301
    edited January 2013
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    Thanks everyone again for thinking of me, today is better. What a big ugly mess it is under there! Ouch..

    Kimberly- what a big day you have coming up, how are you feeling is your pain getting better? What was your DX that you made this decision for the Dbl MX?

    Renee, your "club" is a hit, I am so glad to be here with all of you.

  • rmlulu
    rmlulu Member Posts: 1,501
    edited January 2013
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    Hi Jan Sisters

    Lump/snb done Wed had my family cheer squad. BS said to call next Tue late for results.

    BS told cheer squad he took 5 nodes. 3 planned & MRI showed another spot so he took 2 there. He said they look clear... So we will wait for final on nodes&margins.

    It was a long surgery day 7:30-4:30, but home and feeling fine today. Some how crossing over eases the tension & puts the plan in action.

    Waiting to do my :)) dance. Healing thoughts for those who have had surgery & calming thoughts for those waiting.

  • momtotenkids
    momtotenkids Member Posts: 37
    edited January 2013
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    Just got on to see how everyone is doing. Lem68 glad you are feeling better today and yea it sure isn't pretty under there! RMlulu glad you are doing OK too. I get my results back from my 2nd surgery on Tuesday. Hoping for good clean edges this time becasue I do not want to have surgery again. How is everyone doing with the swelling? I am not sore but the swelling is horrible after 2 surgeries in a week! The incision under my arm is tender but not as irritating as the swelling. I am so tired of this already. I just want to go back to being me again and not being afraid. I am trying to be as brave as I can for my family but wow it is hard some days! Tonight seems to be one of those nights. 

  • Kimberly1965
    Kimberly1965 Member Posts: 32
    edited January 2013
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    Lemon68 invasive ductal carcinoma tumor almost 3 cm, stage 2, grade 3, er-, pr-, her2 + said it was very aggressive and I have three places in other breast that could be cancer also but they are very small. He said it would more than likely be back again. Even said I would need hysterectomy but I already had that in my 30's. I just don't wanna go through this again. I also have nodules in one lung that have grown but they said 8mm is to small to try and biopsy. Most important thing he said was to get this out first and keep eye on lung and chemo should shrink it if it is from breast. We decided to nip this in the butt and get the breast thing over. Hope for the best. I also have ms and stenosis of the cervical spine. So I just want to get this out of the way. Dr did say he felt it was for the best since they think I have the gene. This Way they only have to watch my chest wall and couple other places. Since they started all the poking It feels like its grown some to. We won't know the true story until the final path report. I am not doing this again.

  • new2bc
    new2bc Member Posts: 252
    edited January 2013
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    lemon68,

    I had my SNB the same day right before my double mastectomy. I remember 4 injections to the left breast but anything else related to SNB was probably done when I was sleep. I had my surgery 10 days ago and I still feel like 2 ropes are pulling my chest. I don't take pain medication. Today, they took my drains out. 

    I am praying for you. Try to keep your thoughts busy with something else until you get the results. When I was waiting for results, I was trying to sleep a lot. Good luck.     

  • lemon68
    lemon68 Member Posts: 301
    edited January 2013
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    Looks like 3 of us get results on Tuesday, RMlulu, momtotenkids and myself. 3 is a charm right? I will say a prayer for all 3 of us for good results. looking forward to Lulu dancing!

    Kimberly you are so young to have had so much happen. I am sorry. I understand the choice you had to make, I know they were not easy.

    Momtotenkids- I feel the same, I try to act like things are fine because of the kids. I think it might help keep me calm but I too just want things to be like they were. I just want my quiet happy life back.  I am using ice for the swelling, it feels soooo good! I have numerous didnt kinds, my favorite it a round soft one with a gel inside, doesnt stay cold long but it fits either in my bra or right now in the side of my cotton sports bra, instant relief! ahhhhh....

    New2BC- those injections were horrible, I only had 2, dont know how you did 4!! I am sorry you are having this pulling in the chest, why dont you take pain meds? I have been downing them all day. I dont want to but today I decided what the hell! Thank you for the advice I think I am going to sleep as much as possible this weekend. Are you feeling better with the drains out now? Can you get comfortable with them out now?

    I am learning so much from all of you. We all seem to be walking this walk togethor some a bit ahead and some a bit farther behind. I didnt want to be part of this group but I feel blessed that I get to mingle with each of you daily.

  • new2bc
    new2bc Member Posts: 252
    edited January 2013
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    lemon68,

    I forgot to mention that my breast surgeon gave me a prescription of a cream that I put on my left breast and then I covered it with saran wrap 2 hours before SNB. This was to prevent pain. This is why the shots did not hurt too much.

    I am moving better without the drains. Hopefully, I can take a shower tomorrow. I try not to take pain medicine because it causes constipation. 

    Try to rest and sleep this weekend!

  • lemon68
    lemon68 Member Posts: 301
    edited January 2013
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    Renee- How are you doing with your decision making? I was given a book at the hospital this week from a breast specialist and as I read about choices you kept coming to mind. Let us know your okay and working through it. HUGS..

  • MichelleLee
    MichelleLee Member Posts: 4
    edited January 2013
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    Hi...diagnosed with IDC on 11/21/12. After 3 biopsies, a second cancer was found, DCIS. Had a lumpectomy and SNB on 1/8/13. Five nodes removed, after waiting 6 days for the path report I found out clean margins and all nodes negative! BS found a second IDC tumor during surgery, and ended up having to do a much larger incision than I was told. Five inches long from the nipple straight up towards my shoulder. Yikes, I am still in quite a bit of pain 2 1/2 weeks later, the worst being in my armpit and pain goes down the inside of my arm all the way to my wrist when I stretch my arm up over my head. Node incision is 3" and have quite the indention on the side of my breast. (Hope this gets better?) Have an appointment on 1/30/12 with the RO to get my tattoos and measuring for radiation. 6 1/2 weeks, 5 times a week. MO wants me to take Tamoxifen after rads, but am not sure I want to go through all the side effects. Staying strong with great support from my husband, family, and friends. Stay Strong 2013 Sister Warriors!

  • princesspistol
    princesspistol Member Posts: 2
    edited January 2013
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    I am in the club too. Scary how many of us are in Ohio . . . I go Tuesday to get the pathology. I had three biopsy on 1/22 and they showed IDC in the left breast.



    Darn . . . welcome to the club! I am sure we will being helping each other through the next year.

  • momtotenkids
    momtotenkids Member Posts: 37
    edited January 2013
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    Hi MichelleLee I want to say welcome to our group but that just sounds wrong so instead I will say I am glad you found our group. I think we will be leaning on each other a lot in the next few months. We all need a place to come where we can share our feelings and get the support we need.My arm is still sore after my SNB too. My BS said it would be sore but it really bothers me more than the incisions. I had my first lumpectomy and SNB on the 14th and then more surgery on the 21st to clean up the edges. I had a rough night just feeling sorry for myself last night but woke up feeling better today. I even got some chores done with a little help from the kids. Hope everyone else is doing OK.

  • lemon68
    lemon68 Member Posts: 301
    edited January 2013
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    Welcome Michelle and Princess Pistol.

    Michelle- I know exactely how you feel with the incision in/near the armpit. Mine was only done on Thursday and it is so painful. I couldnt beleive how big it was not sure what I expected but wow.. hurts all the way down my side and my arm. I am sure it will heal but for now it just looks and feels horrible. Are you also going to do the tamoxifen after radiation?

    Princess- I hope you get a good path report, share with us as we are all learning this togethor. It is scary there are so many in Ohio. Where in Ohio are you? I am East of Cleveland in Lake County going to the Seidman cancer Center after my BS is done with me.

  • ReneeinOH
    ReneeinOH Member Posts: 232
    edited January 2013
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    Thanks for asking lemon68.  My BS said a double mast. will not increase my chances of avoiding BC coming back; that the chance of it showing up somewhere else is greater.  I guess I said my peace by making very clear that I want to do everything in my power to eliminate cancer from my body and do not want to be sitting in his office 10 or 20 years from now (although I'm sure he'll be retired by then) with BC in the healthy breast. I really don't want to go through this part a second time.  What I do know is having to deal with this--breast surgery removal and whatever tx to follow--sucks big time. Worrying about something I don't even cherish (I'm done with these things. They served their purpose, but right now they are the enemy to me in my eyes) really ticks me off.

    My surgeon did leave it up to me whether to do a bilateral; he would do it if I wanted it. He wants me to understand it will not really reduce my chances for breast cancer showing up than leaving it on. And, there are risks of complications, of course. And slower recovery time. In my head I am weighing those things with the future I face in screening for possible cancer in that breast, how weird it will be to have one foob, and a real one that's been altered (face it, no plastic surgeon can make a boob look like a 40-something boob that's nursed 3 kids and never was perky to begin with--so he'd do a small implant and lift).