Warrior women - how did YOU decide what to do?

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swimangel72
swimangel72 Member Posts: 1,989
edited June 2014 in Who or What Inspires You?

It's just so unfair that any of us have to become expert research scientists overnight when we first get dx.  My decision to get a mastectomy was made after 3 days of non-stop research online that gave me a terrible headache for a week. My decision was also made years before I was dx'd with BC - my attitude formed by my mother's no-nonsense approach to life - her "if your right hand betrays you, cut it off" biblical sort of philosophy. My mother suffered from peridontal disease - and at the age of 39, rather than treat one tooth at a time, knowing the pain and expense it would cause her (she had 8 small children then) - she told the dentist to remove all her upper teeth. Shocking - but effective - also not that uncommon an approach back in her day in Ireland where she grew up. That said - as sad as I was about getting a mastectomy, finding out later that I was Her2++++ made me feel I was guided to the right decision.

Fighting BC in my mind is like fighting a monster - it's better to fight and kill it while it's tiny. All day I kept thinking about that movie "Alien" and how much it reminded me of the fight with cancer. Googling "fighting cancer like an alien" brought me to this web site - read this story - it's exactly how I look at this battle..........I am a warrior woman...........I take no prisoners............and I will be victorious - even if I must lose my hair, like Signourney Weaver. Wink

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

    Swim, that's really interesting how your mother's attitude influenced you.  My mother's played a part in my decision, too.  She had BC in her early 60's and could have had a lumpectomy with radiation but she decided to have a mastectomy and avoid radiation.  She was so matter of fact about the whole thing -- this is what you need to do to put it behind you.  And she did just that, never looked back with regret.  I always admired her for that.  And my dad was supportive and wanted her to make that choice so that they could have a long life together.  I was in awe that my father showed such love and caring toward her.  I hoped I would have a supportive partner if I ever faced BC.

    Flash forward 25 years, and voila! I'm diagnosed with BC and undergo 6 biopsies over several months.  In the end, I was told I could do a lumpectomy with radiation and tamoxifen.  I had two additional opinions, which concurred with the initial BS's recommendation.  I changed my primary physician and my BS at the very end.  After lots of research on the internet, I made appts. with an oncologist, a radiation oncologist, and three plastic surgeons.  In the end, the decision was my call, and although I could have had a lumpectomy, I chose the bilateral mast with reconstruction.  All the various modes of testing showed that the general health of my breasts was questionable, and I just felt I couldn't live my life always wondering if something else would be found.  After 6 biopsies, I didn't want any more.  The pathologist's report after my surgery confirmed I had made the right decision.  Three additional areas of DCIS had shown up, and it was in both breasts.  

    My mother didn't have the option of reconstruction, but I chose to do it.  Jan. or Feb. will be nip time. 

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  • everyminute
    everyminute Member Posts: 1,805
    edited November 2008

    Everyone told me to have a lumpectomy - including the surgical oncologist at Memorial Sloan Kettering who kept telling me I was overreacting.  It was thought that I had a stage 1 maybe small stage 2 with no lymph node involvement based on mri and ultrasound.  I said nope - I want a bilateral.  My husband was extremely supporitive of my "overreaction".  Turns out my gut feeling was right - I had a 2nd small tumor that did not show up on the MRI and 5 positive lymph nodes.  I also has LCIS which made it much more likely to occur in the other breast.  I have never looked back and never regreted my decision.  I, even more so now, always stand up for myself and follow my gut!

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited November 2008
    Thanks Tina and everyminute for sharing your stories! I totally agree - we need to follow our gut and stand up for ourselves - I'm doing that once again by arguing with a gynecological oncologist that I need a TAH and Ooph during my abdominal hernia repair next summer. I think he finally "sees the light" and is agreeing with me - hurray! I have to get open abdominal surgery anyway - why should I hang onto an  old, worn-out, fibroidal-endometrail enlarged uterus and ovaries with cysts just because they are "at the cusp of normal limit"............what's "beyond the cusp" I asked him? Can anyone guarantee that 2 or 3 or 4 years from now I won't start spotting or showing signs of other problems down "in the basement?" No - of course not - so I've been pushing him to approve it - and finally I think he will! Smile
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  • everyminute
    everyminute Member Posts: 1,805
    edited November 2008

    my onc wanted me to do lupron shots after chemo but I really wanted a tah and ooph - so that is what I am getting!  surgery will be done at the same time as breast exchange in 3 weeks  - I want this behind me and i want to know I did everything I could!

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited November 2008

    Well, it's a nice concept.

    I've done everything in the most aggressive way possible - bilateral mx. when I had Stage IIa and clear nodes. Took the nastiest possible chemo (TACx6). Took no prisoners - the only way to do battle!

    My tumor had other plans. Yell

    Lisa

    p.s. - YMMV, and likely will. I had my genetics against me, and a history that I knew meant it could come back with a vengeance and quickly. Still. . . you do everything right. . .

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited November 2008

    Lisa you are still a brave warrior woman - damn the nasty BC........don't stop fighting! Excuse my ignorance, but what does "YMMV" stand for?

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  • irishdreama
    irishdreama Member Posts: 938
    edited November 2008

    I did the most aggressive tx as well-4 AC + 4 Taxotere, then bilateral mast, then rads-32 treatments. Now I'm on tamoxifen for 5 years. So far NED.

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

    I weighed the odds kind of...

    I didnt know if I could do a mast so did lump.....

    didnt want to use chemicals anymore than needed so choose complete hysterectomy....

    There is a HUGE history of other types of cancer in my family....so have always known in my heart that I would have some kind of it in my lifetime.....due to the family history choose no chemo as I have heard that the more you use it, the less likely it is to work well if you need it more agressively down the road....and the idea of the long term effects versus's the benefit of almost none for the breast cancer I had.

    I think the most important thing is to make choices you can live within inside yourself....

    I know it could come back but for the last two years Ive been NED.

    Guess I might have blinders on a little bit, because I see ladies here that were dx'd with a less degree of the beast than I that have recurrence, mets but I think it will be awhile down the road before Im faced with those words, but I think it will happen...does that make sense???

    Every woman that has to go through this journey is a WARRIOR in my opinion!!!!!! 

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  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited November 2008

    Swimangel -

    YMMV = Your Mileage May Vary  And like I said, will.

    I am so proud of you for insisting on getting ALL the "problems in the basement cleaned up". You deserve to start some major healing and feel strong and healthy once again! Good on ya!.

    Lisa

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  • wishiwere
    wishiwere Member Posts: 3,793
    edited November 2008

    Boy, do I wishihad know you all 3 years ago when I had an ovary out for a 7cm mature cyst.  Had I known then, what I know now,  post BC, I'd have had them yank the entire parts out then!  As it stands, yes, I'm post mast/chemo/on arimidex and now bleeding again! UGH...so playing the game of test/wait, test/ wait and wondering all the time if it's moved on even though there were no node involvement with sln.  Who's to say I don't follow that 5-10 % chance that there were more than one set of sln, especially with 2 primary's :(  Just not a good scenario and wishihad known the warriors I've met as you women are back when this all started :( 

    Hopefully we all remain NED and can move on.  {{Lisa}} I keep you in prayers and good thoughts with your fight, and look to you ladies with the upmost love in my heart for your fight of this demon/alien! :(

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

    I agree! I did a mast/recon rather for my DCIS than lumpectomy to avoid rads. Damn if I didn't get an IDC diagnosis from my mast path and have to do CHEMO. All our decisions are made with the best knowledge we have AT THE TIME with the help of our friends/family/docs AT THE TIME. I had a subsequent total hyst to avoid that chance of cancer due to other history, and now I still look at my remaining breast as a potential betrayal in the future. Now wish I had taken it also - that would show cancer! Guess I finally learned I am not my hair or my body, but my warrior spirit!

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited November 2008

    jpann - even though you have a strong family history with cancer, it's not INEVITABLE that you'll get mets - so far, so good - and I'll pray you'll continue to dance with NED.

    Lisa thanks for spelling out the letters - very cool meaning, I'll have to remember it! I still feel a bit nervous about my own insistence on the hysterectomy and ooph - even though the surgeon himself said there's low risk for problems - there were low risks for problems with my so-called "Diep" and I ended up with staph. Sometimes I feel "ignorance is bliss" and I should just go along and not research everything to death - like maybe I'm jinxing myself - but even when this weird thought occurs to me, I still can't help take the bull by the horns and make demands of my doctors. Sigh.......I'll just have to keep praying that it all turns out for the best.

    Wish - I'm sorry you're bleeding again - and how I hate all that testing and waiting. I'll be praying for you too!

    Laura - it's fortunate that you DID do the mastectomy - at least you didn't need radiation. Same thing happened to me - I decided on the mastectomy with my surgeon nearly promising me that I wouldn't need rads OR chemo - and damn, doesn't my path report show Her2+++ which meant chemo with Herceptin. Still - it made me feel better knowing that the mastectomy was a BIG GUN that hopefully will help even more than the Herceptin in preventing a recurrence. Laura - are you saying your other breast IS showing cancer - or not? I still don't look at my other breast in a suspicious way, isn't that curious? Somehow I think of my other natural breast as "old reliable" - never had a problem and hopefully never will. Still - ask me how I feel in January when I go for my first mammo after being dx'd! I'll probably wet my pants with anxiety waiting to hear what they see - what kind of warrior women is THAT?! Embarassed

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

    Swim-yes, I know that my feelings about cancer being inevitable are probably incorrect but how can one get over those feelings? For now, Im enjoying the NED status and have moved on (well, mostly....cant stop coming here) and have started a new life with a new man that is absolutely wonderful!!!!!!!

    Dont worry about peeing your pants....I think we ALL have that undeniable urge while we are waiting for testing or results...I know I did. My first 3 month followup after treatment ended just about did me in mentally!!!!! My first mammo (and only so far, will explain in a bit) they jerked my chain pretty hard...got a call saying they saw something, come back....30 mintues later a call from my doctors office saying they didnt see anything, 30 mintues later another call from the radiologist that read the films saying YES they did.....30 mintues later call from doctors office saying they were mistaken and yes there was something saw in "my good breast".....ended up in surgery for micro calcifications so now and the proud owner of two bad boobs!!!!! but anyway....by time it was all said and done I was on drugs for anxiety!!! I only took them for a couple of weeks but I cant believe how they helped at the time...

    The mammo part-I skipped my 6 month mammo in May because of the anxiety and I guess I just needed a break from being a BC survivor...I spoke with my oncologist earlier this month about it and he said that it was fine but I will need to do one this next coming May for a yearly....

    Anyway to make a long story short-YOU ARE A WARRIOR WOMAN right along with the rest of us!!!!!!!!!!!!!!

    Hope everyone has a wonderful Thanksgiving holiday and I for one will be saying extra prayers this year....

    Hugs

    Jule

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

    SwimAngelWarrior: No, my remaining breast shows no issues; however I did have to get an implant in it to match the recon on the right side. The recon came out bigger and I didn't want ANOTHER surgery because it was still so painful. Turns out I had nerve damage from the lymph node removal (yet another surgery!). So, down the road I will have to deal with the implant. So, we will have plenty of opportunities to prove we are warriors, and nobody has to know about the Depends while we are waiting for test results!

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited November 2008

    Thanks Jule - hope you have a nice Thanksgiving too - with no added stress! My biggest stress is "will my turkey thaw in time - and will I gain weight?" Wink

     Laura - my new foob was made larger than my natural breast, so when I complained to my PS, asking him how he'd fix it in Stage 2, he said, "you could make the good side bigger." To that I said, "No way - we're not touching the good girl! Leave her alone!" Fortunately,  my new PS said he'll make the new foob smaller with a lift - you're right though, it does involve more surgery in Stage 2 - but fortunately I have no feeling in that side, just a feeling of heaviness. I'm so sorry you got nerve damage from the lymph node removal! I lost the feeling in one of my toes after my surgery - it was DIRECTLY related to the surgery, because I complained about it right in the recovery room. And the numbness in my stomach hasn't gone away either. My favorite nurse kept asking me about my numb toe and calling the PS. When he finally looked at it his answer was, "Oh well, we all lose feelings in our toes when we get older." Like AGE had anything to do with it! Yell Well - it was just another reason I decided to switch PS's.

    End of my gripe session - I feel guilty complaining when I feel so much stronger these days, thank God - and I'll be saying a prayer of thanks for all you wonderful ladies for sharing your stories with me!

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