Still in Limbo

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phil_2012
phil_2012 Member Posts: 9
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Hi, glad to find this site where i can be comfortable to discuss how I feel issues like mine .... I am 11 days post surgery left mastectomy.  Everything happens so fast, after I received my initial US last Oct. 31.   I have yet to digest everything that is happening.  Tomorrow, I will received my pathology result, will this be a death sentence? I still dont know what to feel, I am totally numb as if all my senses shut down to shield me further from any more negative news.  Though few people who knows my condition are very supportive, I feel that they do not really understand how it feels.  It is so comforting to read all the threads from this site that I am not alone in this battle, I hope I can also gather all the strenght that all of you have and start this journey full of hope for tomorrow......hugs and kisses to all of you my new family....   

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  • mdg
    mdg Member Posts: 3,571
    edited November 2012

    I am glad you found this site.  It helped me through all of this.  I hope your pathology comes back very mild....good luck and I hope you have a speedy recovery from surgery.

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  • cowpower
    cowpower Member Posts: 293
    edited November 2012

    Hi Phil, I remember being right where you are last winter. For me, getting the pathology info was the absolute scariest part of the journey. I was thinking of the resuts as a sentencing hearing also. It turned out that that was the meeting that actually did give me hope and comfort. I found out that while the pathology reports are really a map to guide the journey - they determine the course of action your treatment will take. Remember that there is ALWAYS hope and that you have already taken the most important step in making yourself better - you have had the surgery and the source of the problem is removed. Is there someone coming to the appointment with you? If so, that second pair of ears will be very helpful - I get a bit deaf when anxious, lol. Also, if you have anti anxiety meds, I found it helped me concentrate on what the docs were saying if I took one before appointments early on in. If you don't have meds, dont hesitate to ask for something mild to get you through the early days of treatment.

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  • phil_2012
    phil_2012 Member Posts: 9
    edited November 2012

    Thanks for your encouraging words, in times like this, we all cling even to the tiniest hope that is available.  I received my reports and would like to focus on the positive side as explained to me by my BS, that it is still in the early stage ( II ) at 1.6 cm, it has not spread as there is no lymph node involvement, and since it is hormone receptor positive, we can focus on specific treatment.  I hope I understand it right with my DH who accompanied me. I still am not sure with myself if I have totally accepted my condition.  I still can not reconcile the fact why I would acquire this illness if I live a healthy lifestyle without alcohol nor smoking, with daily exercise & nutritious food.  What did I do wrong with my body? I salute you girls for the courage of facing this journey, I know I will soon learn how...maybe I can start by not planning anymore for the future but to live & enjoy life one day at a time.     

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited November 2012

    That is very good news!  It sounds like you will be able to skip the scary stuff (chemo & radiation) and will probably be put on Tamoxifen as a prevention against recurrence.  You cannot blame yourself, this just happens.  I too had very low risk (young for this, not overweight, don't drink or smoke, pretty healthy diet, I even nursed my babies for a long time!) but it happened anyway.  Stuff happens.  As is often said here.... the biggest risk factor for breast cancer is... having breasts!   Sigh...

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  • phil_2012
    phil_2012 Member Posts: 9
    edited November 2012

    Because of the age factor, bs said I will need to go through chemo, I will meet with my onco in the next few weeks, hoping that he will have different opinion on this... this for me is the scariest part, losing my crowning glory rather than the surgery. I feel that everyday ,though slowly am accepting my new life .    I just dont know what adjustments, more on my professional life, would I make when I start with the chemo treatment, and that would be in the next 2weeks.  As of now, my life stood still and getting the hang of life's little surprises..... :)   

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited November 2012

    How old are you?  I think you should most definitely get a second opinion and don't let anyone rush you into anything.  If my nodes had been negative, I never would have agreed to chemo, the risks would outweigh the possible benefits for me.  But I am 49 and have no risk factors other than family history.  It's different for everyone.

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  • vanstrada54
    vanstrada54 Member Posts: 68
    edited November 2012

    I know how you feel  .I was diagnosed on my birthday the 4th of October  so i am not complaining but everything moved so fast from diagnosis to surgery ! I  had my drain taken out yesterday   after 2 weeks  post op  left mastectomy .  I find the tightness of my chest  frustrating !  Is it ok to use  any moisturisers  etc  on the wound ?  My drain site   broke down  and  I  am currently taking   antibiotics for   the infection . I am having a bone scan tomorrow  at Toowoomba  and on Tuesday a Cat scan .I do believe knowledge is power  but the unknown is so unnnerving ! Any advice  or  suggestions welcome . Berlei donated a beautiful bra  . How long after surgery do I wear it  ? 

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  • phil_2012
    phil_2012 Member Posts: 9
    edited November 2012

    Hi Jennie93 am 46, the onco that I would be seeing would be my second opinion... am just preparing myself for the worst case scenario, so that it would not surprise me again....hate surprises these days!  I understand that each case is unique from the other....

    vanstrada54, sorry to hear you got dx on your birthday...I guess we all feel the same from the time we got our dx that everything is to be rushed and life is never the same as it was before, from a busy healthy body to suddenly disabled person.  I am not complaining though, am just amazed with the turn of events...there must be a reason for all these happenings.... yes, the tightness of chest is really frustrating and debilitating, it restricts my mobility...I got to wear my bra when i got out of the hospital after 5days of confinement.  I think its ok as long as you are comfortable, listen to what your body is saying....

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  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited November 2012

    phil-2012, sometimes - no matter how healthy our lifestyle is - cancer just happens.  It is something that happens on the cellular level that cannot be predicted or controlled.  Certainly, there are things you can do to lower your risk (like not smoking or drinking), but you can't eliminate it completely.  You did nothing wrong.   There are a lot of women on these boards just like you: didn't smoke, didn't drink, ate a healthy diet, excercised regularly, kept their weight down... and cancer still happened.  So, please, don't think that it was your fault.

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  • LaCombattante
    LaCombattante Member Posts: 226
    edited November 2012

    Hi Phil- 2012,



    Are you HER positive or negative? if negative, I would request Oncotype Dx test to help with chemo decision.



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  • phil_2012
    phil_2012 Member Posts: 9
    edited November 2012

    HER 2+ says equivocal required for further FISH testing, this will be discussed with my onco.

    SelenaWolf, you are right , this thing happens to everybody, let's just put it like winning the lottery, you hit the jackpot and your name got picked out from the rest of the universe.... lucky us, guys! lol....

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  • dltnhm
    dltnhm Member Posts: 873
    edited November 2012

    Hi phil - there is a thread for "penguin cap users past and present" which might interest you to look into this as an option to possibly keeping most of your hair through chemo.



    It's something I looked into and decided against. I am pleased with my decision but I also was quite comfortable never wearing a wig or scarves and only wore caps a handful of times outside of my daily running.



    Agree with Selena regarding how this cancer appears. You just never know. Not a smoker or drinker, eat pretty healthy, active exerciser, etc. Don't blame yourself and remember there are plenty who might drink or have smoked or not always eaten a particular way ... and do NOT get breast cancer.

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  • vanstrada54
    vanstrada54 Member Posts: 68
    edited November 2012

    Thanks everyone  .

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  • dcsandpiper
    dcsandpiper Member Posts: 26
    edited December 2012

    Congrats on having no lymph node issues!!!!  You should be very happy with that report as it will at least reduce the likelihood of a whole other series of side effects.  Good luck!

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  • ek25
    ek25 Member Posts: 53
    edited December 2012

    Phil,

    I just came across this post and was wondering if you have an update to share regarding chemo. I was diagnosed with DCIS back in April and after an MRI, it turned out to have a small component of invasive.  My nodes were negative and it was always referred to as "low grade" disease.  I went through a lumpectomy and then a reduction/lumpectomy because the DCIS kept clouding the margins.  After two procedures, they still couldn't get clean margins, so I opted for a bi-lateral mastectomy, which I had last week.  Still recovering from that.  

    My surgeon had run the Mammaprint test to determine whether I'd benefit from taking Tamoxifen for 5 years and about 10 minutes before they were about to put me under, she says, "In case you were having second thoughts about this surgery, your Mammaprint came back as High Risk".  Not a great conversation to be having 10 mins before surgery.  So now, instead of potentially avoiding Tamoxifen altogether, I'm now probably looking at both Tamoxifen and chemo.  Won't know til I meet with the MO in a couple of weeks.  Chemo for a 5mm invasive tumor with all the markers of low grade disease.  I'm also 46.  Would love to hear an update on how you're doing and what you ultimately decided for chemo.

    Thanks.

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  • phil_2012
    phil_2012 Member Posts: 9
    edited December 2012

    hi ek25, my MO recommended 6 cycles of chemo, didnt got protocol clearly. guess advance chemo brain. am completing all pre-lab requirements, we need to administer the chemo no later than 21st of dec, i understand it should be given 5-6wks after surgery to maximize effectivity of treatment After laying down all the plus n negative factors ofmy case, i was convince that i should proceed with the treatment. although it is an early stage, grade is 3 which was explained as aggresive combined w her2 neu +.



    With this latest development, am bracing myself for a chemo christmas. Pray hard for courage n strength to carry me through this journey.

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  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited December 2012

    Phil 202.....I did not have chemo so cannot tell you about that experience. Just wanted to say however, if you read some of the posts from gals who have gone through chemo or are going through it now you will see that many of them say they "sailed through it" .

    Everybody reacts differently to all these meds so try to be positive and pray you will

    Be one of the "sailors" ...good luck and stay positive❤❤❤

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  • phil_2012
    phil_2012 Member Posts: 9
    edited December 2012

    Ladies, I had my first chemo session as scheduled last Dec.21.   It was not that scary as I thought it was, or maybe I had just prepared myself for the worst case scenario.  It has been 8days since my first infusion and the only side effects I experience was the nausea for the first 2days and my unfriendly taste buds that even if I feel so hungry, my taste bud does not want to accept any foods. On the 5th day, I feel just like my normal days, although I already cut my hair short, there was still no shedding off as of this time, i know it will start to fall off soon (14th day? ) or maybe I am still hoping that I would be one of the those lucky girls who experience only thinning out and not complete fall out...but even then, I already made some preparation and resolve to accept what may happen.  I just thought to myself that if the rest of the sessions will feel like this until the final session, it will be a breeze...but I was told that effect is cumulative ...either way I am grateful to our Lord that He is slowly preparing my body for all of these things.

    ek25, I decided to proceed with the treatment and resolved to increase my survival rate.  I am now at peace with my condition and so as not to stress myself to just accept my illness  like a bad flu with a different kind of treatment.  Take each day as it comes.  I wil soon go back to work  after new year, there will be some changes on my new normal routine but am glad to be back on my feet again even if am still in treatment. 

    Thank you my new friends for being an anchor of my ship while I am sailing through my new destination.  Happy New Year!

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