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27 year old with IDC and scared :(

Jinx27
Jinx27 Member Posts: 119

First and foremost, being able to communicate with others going through the same thing as me really helps :) Thank goodness for this website and forum!

I had itchiness in both of my breasts one year ago and mentioned it to my GYN, she felt both breasts and summed it up to PMS. Then came a dent, I thought it was from my bra, changed bras but the dent was still there.

A year passes by....

Went in this past April to have by general practitioner feel it, thinking it was Fibroidendoma, he immediately sent me to a breast specialist had a mammo and ultrasound. Radiologist stated that the left breast a 3cm mass at 4pm ( IDC) and two satellite DCIS below at 5pm. Biopsy was taken on 08/27/2015 and expected results the following week.

Being the anxious person I am, I couldn't wait and after labor day I called my consulting breast surgeon and her nurse for the results while I was at work.

I was told I have IDC on 09/08/2015

.After meeting with my breast surgeon and her nurse practitioner, she stated that my IDC is hormone receptive meaning ER+ and PR+, she was actually quite shocked that someone my age had this and went on about genetic testing ( Didn't make me or my parents feel any better).

Since then I have had an MRI, Chest X-Ray, Bone Scan and Blood-work, the results will be in on 09/16/2015. I cant help but feel like my life has come to a halt. I'm currently working, actively dating and taking my science pre-reqs for nursing school, those things must stop now in order for my situation to be handled correctly.

Directly after my MRI the the breast surgeon's NP stated that she wanted to ultrasound my right breast after seeing my MRI :( Im hoping my results from the other test show that it hasnt spread.

09-16-2015 is results, ultrasound and genetic testing in one day. I will def post everything, Please keep me in your thoughts! Thank you in advance!!!


FOR THE NEWLY DIAGNOSED, STAY POSITIVE!

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Comments

  • doxie
    doxie Member Posts: 700

    Jinx27,

    So sorry you have found yourself here. Nevertheless this is one of the best support and information sites you could find. There is a forum here for younger women I'm sure you can find easily. They should be able to help more specifically than someone my age whose cancer was not such an unusual event.

    Looks like your medical team is on top of things and taking your case seriously. Get second opinions if you have doubts in or are confused by the treatments suggested.

    You can do this. We are here for you.

  • peggy_j
    peggy_j Member Posts: 89

    I'm so sorry to hear this has happened. When I was diagnosed at 46 I thought I was too young, and you are much much younger. There's a lot of information at the beginning and it can be overwhelming. I hope you're able to get the support you need. Some support centers host support groups for people who are young with cancer. And....the New York Times used to have a young woman who wrote a series of articles about life with cancer. You may be able to find those online. Also, I remember seeing this book at the library and flipping through it, Planet Cancer. If I'm remembering correctly, it was written by a bunch of people who survived cancer in their 20s and early 30s. It was a good book.

    http://www.amazon.com/Planet-Cancer-Frequently-Inf...

    One piece of hope: while a cancer diagnosis is devastating and overwhelming, many patients find that once they get into their routine (post surgery and while continuing the next phases of treatment) that they are able to continue some of their normal life activities. I only had surgery and rads (no chemo). I was in grad school at the time and I continued, albeit, I limped along for 2 semesters (during treatment and after, then I was fine). I found it was helpful to have something else going on in my life than just cancer treatment. I know some women who continue to work during rads. I had a friend who took time off for her surgery and first chemo session, and then worked part-time during most of chemo (and she has two young kids). It's not easy by any means and each woman gets to decide what works for her, but I guess I want to give you a lifeline that a cancer diagnosis doesn't automatically mean your life is 100% on hold until treatment is over.

    I'll send you good vibes. FWIW, I found that this period of time waiting for test results to be it's own special agony. (and then I'd get that Tom Petty song stuck in my head, "The Waiting is the hardest part...") It's probably impossible to not be thinking of it a little. I'd like to pass along the suggestion I got for "distraction therapy." I used to agonize and spend too much time with Dr. Google learning as much as I could. The advice I got was to do something fun for a distraction. I chose to spend time in nature and go to movies, so I wasn't worrying about it 24x7. This might not be what you're going through, but if you are at all, maybe try some distraction. I'll send warms vibes for good results from your tests. (((hugs)))

  • Italychick
    Italychick Member Posts: 527

    Jinx27 I am much older than you, but don't stop your life. I fought hard to work, exercise and watch my grandkids all through surgery and chemo and did it all just fine. I guess what I am saying is don't feel a need to put your entire life on hold. The more normal things you can do, the better. It will keep you out of your head and focused on the everyday things of life.

    Best of luck

  • Jinx27
    Jinx27 Member Posts: 119

    LADIES THANK YOU!!!!!! :)

    I went to visit my father and will be with him and my mother for my results on Tuesday. Went to church and got a chance to pray. It really helped and I will do it everyday!

    Did some reading and looked at my path report to get a full understanding of this type of cancer, chances of recurrence and why I was given grade 1. Also I'm now beginning to understand treatment options that may be an option for me according to each stage.

    I'm fighting this!!! My mood goes up and down because of uncertainty particularly while waiting for results. However, I'm choosing to stay encouraged and promise to use my story to help others.

    Second opinions are being lined up. A meeting with MO the is affiliated with my breast surgeon is going to be scheduled soon, supposedly it's really hard to get a meeting with is person...don't know about wait time.

    I will post more often, it's really therapeutic.

    @peggy_j and @doxie you are soo swwet, I love reading and will pick up the book, I only have two classes this semester, but one of them is anatomy and physiology I and the other is nutrition. Both are once a week. We will see what the Dr. will say.

    I accept your good vibes with open arms and a open mind :) Thank you.

    @Italychick, if that's you in the icon photo, your beautiful! I will try my best to do other things than think about cancer everyday :) I plan on doing yoga and changing my eating habits .




  • Italychick
    Italychick Member Posts: 527

    jinx27 that was me before chemo. Now I have hair about an inch long, but it is coming in thick. I guess I better change my picture, just haven't done it yet.

    Stay strong. Grade 1 means the cells look closer to normal cells, which I think is a good thing!

    Just think normal, normal, normal, as much as possible. Mundane, everyday things keep me out of the crazy locker!

  • Skittlegirl
    Skittlegirl Member Posts: 138

    I am sorry that you have found yourself here too. I am young as well, but a little older than you (32). My surgeon wants to send me to the genetic counselor too, but that hasn't been scheduled yet. Although since I do have two girls (7 and 5), I do want to get that checked out at some point.

    I understand about your mood changing. Normally I am pretty upbeat and the cancer diagnosis doesn't bother me, but every now and then it's hard.

    Being ER+/PR+ is good.

    Just take it one day at a time. Also you might see if there is a group near you for young women with cancer. My surgeon informed me about our local group so I went to their monthly meeting last week. It was good. Most of the ladies were through treatment, but they are full of information and eager to answer any questions.

  • Optimust
    Optimust Member Posts: 1

    I am so sorry that you are experiencing this at such a young age. I am 50, ER+ and PR+. As a mother of two teenagers, the diagnosis I received in March 2015 was devastating and felt like a death sentence. It took several weeks for the shock to fade so that I could process the information coherently. I extensively researched my disease, studied alternative treatments, and sought out 2nd and 3rd opinions until I found the right doctors. My treatments included 4 rounds of AC followed by 12 of Taxol - my last taxol is tomorrow!!! Throughout, I followed a healthy diet, exercised and maintained my normal routine, as if nothing had changed. I forced the fear from my mind and replaced it with a defiant, unwavering conviction that I will be well!!!!! There is no doubt.

    I know how scared you must feel right now but know you have power and influence in the process. I truly believe that positive thinking, healthy living and supplements (MO approved), are helping my body heal. According to MO, my 4cm lump has shrunk remarkably - which I guess, was a surprise to her, but not to me!

    My most positive thoughts and best wishes go out to you.

    Dee


  • butterbeanlz
    butterbeanlz Member Posts: 1

    For me, like peggy j mentioned, this beginning bit was by far the worst. All the testing and the fear of the unknown and then the knowing. Even worse than chemo and losing my hair, which I was desperately afraid of beforehand. When we got the results, my husband and I went for a walk by a lake and had a quiet think. And I realized that the one thing I can control is how I deal with it. I can let it make me shout and scream and sob and despair, or I can swallow all that, put my head down and push on through. Sounds simple, but to me it was an epiphany at the time.

    There will be some seriously crappy crap ahead of you but remember: YOU CAN DO THIS. And one day, a year from now, you will be telling another young woman the very same. Being able to talk to others who are going through this is so very helpful, as you've already picked up.

    Sending you strength from afar xxx

  • ml143333
    ml143333 Member Posts: 190

    I am sorry that you have joined us here, but this is a great place to be for support and answers.  I was diagnosed at 46 and thought that I was too young, but you truly are young.

    Being diagnosed at all stinks beyond belief, but at least you were diligent enough to be diagnosed so that you can address the problem now and not later when it would be much worse.

    I truly do agree with others that this initial phase of your diagnosis and treatment is really the worst because there are no answers yet, no surgery date, no treatment dates, and just nothing to go on.  Once you get some of this in place, you will begin to feel a bit more settled or in control because there are set dates in place.  Once you get through surgery and on to healing, you will begin to feel better.  If you have to have chemo or radiation - it won't be wonderful, but it will be doable.  Once you start tamoxifen, you will be onto healing overall.

    Look at each day as a new beginning and go from there.  Please do continue to post here because we are a family here!

  • tshire
    tshire Member Posts: 54

    Hi there! I am very similar to you in diagnosis, it looks like. It's rare to find young people with these stats. I had a lumpectomy and got through that just fine, now I am getting ready for 4 rounds of TC chemo. Your oncologist may recommend the same based on your age, even if you have negative lymph nodes. It isn't easy, it's actually terrible, but my family, fiance, and friends have helped me a lot. You'll make it! Let me know if you have any questions, I've done a LOT of research!


    Tiffany

  • Jinx27
    Jinx27 Member Posts: 119

    Just got back from my appointment !! Here goes that stats...

    MRI showed a mass and two satellite lesions in the OTHER (right) breast :( got that biopsied.

    Blood work fine

    Bone scan fine

    Chest X- Ray fine

    Genetic testing "Myriad" done and will here back in 10 days

    Dr. noticed a normal but large lymph node on the left side and took some fluid just to check. All of my blood work and MRI contrast were conducted on that side, she is thinking the size is mostly due to that, we'll see.

    During the biopsy of the right breast she spoke HEAVILY about undergoing a mastectomy and having reconstruction.

    I personally would like to have a lumpectomy on both sides and radiation. But due to the size of the mass on the left breast and maybe the right she is advising that it should be tested to see if the mass responds to different ways to change the size. (Chemo or hormone therapy)

    An oncologist that the breast surgeon is affiliated with is suggesting that further testing be done to see if the tumor responds to chemo or other ways of shrinking ....this oncologist doesn't take my coverage, however he is still advising my case.

    I have a meeting with another affilited oncologist that takes my coverage here in Philadelphia, the MO will be considered in my 1st opinion.



  • Skittlegirl
    Skittlegirl Member Posts: 138

    Glad you got some answers. Good luck with your other oncologist meeting. My surgeon flat out told me that a mastectomy was my only option because the NCCN guidelines would not allow for anything else. So in a way that was a relief because I didn't have to worry about being over aggressive or not aggressive enough.

  • bluepearl
    bluepearl Member Posts: 133

    Grade 1 is good news. Slow growing which doesn't happen often with someone your age. ER+/PR+ more good news in that it is treatable with anti-hormonals for a long time. Good news on no spread in distant sites. Chemo is sometimes used to reduce the size of small tumours and remember, survival wise, lumpectomy + radiation is = to mastectomy. However, if you carry the genes, mastectomy is recommended to reduce any chance of recurrence to very small % points......1-2% I believe. Your chances of recurrence are higher with lumpectomy but doesn't affect survival. Make sure you get the oncoptypeDX too as even grade 1's can have surprisingly high scores. (and grade 3's surprisingly low ones). Cancer is an odd, ugly duckling. Reconstructions after mastectomies can be beautiful too. I chose not to, but many women are very happy they did. Best of good health sweetheart and hope all news is good news!!!!!!

  • maybeoneday
    maybeoneday Member Posts: 2

    Jinx27

    I found out on Monday, I have IDC. I'm in my last semester of nursing school and praying that I can finish. I'm 34 and understand how you feel. I meet with the breast cancer team to find out my treatment plan on the 22. I'm also ER+ and PR+, I believe we will get through this.

  • radgal
    radgal Member Posts: 23

    Hi Jinx27,

    Sorry to hear of your diagnosis -- I was just diagnosed 7-1-2015 myself and had surgery on 8-25-2015.

    I wanted to make you aware of another breast cancer website called Young Survival Coalition, described as "Young women facing breast cancer together".

    You can google it (if I post the link this post may accidentally be flagged as spam and deleted), go to the website and see additional breast cancer forums of many, many people your age and younger diagnosed with breast cancer. There is specifically a forum entitled "Under 30" at YSC. Please consider checking it out.

    I know this whole breast cancer diagnosis is hard and scary -- know that there are many friends you haven't yet met here and at YSC whom you can share honestly with.

    Hugs sister!

  • april485
    april485 Member Posts: 1,983

    Devil

    NO ONE your age should have to deal with this crap! I hate it when another young woman of childbearing age comes here to tell us she has cancer. Totally not the way it should be! I am 60 and have lived life but you are just starting yours. You will get through this though and every day they are finding new drugs and treatments. Hang in there and wishing you nothing but the best as you put this chapter in your life in the rearview mirror. Just wanted to send you a big hug!

    Hug

  • msphil
    msphil Member Posts: 184


    hello sweetie, sorry u had to join us here but we are here for u, and know firsthand how u felt and are feelin, once everything is is place treatment wise things will ease up, take it from me and us here who been there, also i come back often to Inspire, i am a 21 yr Survivor(Praise GOD), so what i did was held on to my Faith, and HOPE, said Positive things to myself, "i will make it thru this, "this too shall pass", hang in there. msphil(idc,stage 2, 0/3 nodes, chemo and rads and 5 yrs on tamoxifen)

  • 39andhip
    39andhip Member Posts: 8

    Jinx27 - I'm so sorry you are dealing with at such a young age. As others have said, the initial diagnosis is in many ways the hardest part. The early days of waiting for results, surgery dates, and treatment dates are very difficult. I feel like it calms down once you have definitive diagnoses and plans (even if those aren't what you had hoped for). Hang in there! I agree with others that not putting your life completely on hold may be helpful. I know for me, getting back to work when I could helped the days before surgery pass much more quickly (and BTW, I teach many pre-nursing students, so let me know if you need any help :)). Prayers for you.

  • nature_lover67
    nature_lover67 Member Posts: 1

    Hi Jinx27,

    I too am 27 and was also recently diagnosed so I know exactly what you are going through. In the middle/end of July I randomly had the inkling to feel my breast and stumbled upon a mass, so like you I went to my OBGYN to get it checked out and was also told most likely it was a fibroadenoma. After a 4 hour insanely painful biopsy, I had to have a mammogram where they saw micro calcifications and I found out the result on 8/31/15. I just finished a microbiology exam, and when the lady told me, I felt like my world stopped for 5 seconds. I was in complete shock and horror to say the least. We are so YOUNG, how could this happen?!?

    In the past few weeks since I found out, I have had numerous biopsies, MRI, scheduled for CT/PET scan next week.. I had ultrasound done last week because the MRI found another small tumor and an abnormal lymph node which I found out 2 days ago were both positive so it changed my diagnosis from stage I, to stage II with potential to change again if the PET/CT scans find it metastasized to other regions.. :(


    I am in medical school, just finished up my first year and have no idea how this is going to impact my completion of the program, so I too can relate with you there. I think I am going to have to take a term off to start chemo treatment and that is the worst part of all of this..

    I am waiting on the results from the genetics test to determine if that is the reason why this happened to me at such a young age..

    It is nice to see that there is someone else my age going through the same thing, this recent diagnosis can definitely be isolating at times, so its nice to connect with you.

    I will keep you in my thoughts and will think positive thoughts for you.

    If you want to talk more please don't hesitate to contact me, I would be happy to keep in touch throughout our process.

  • moderators
    moderators Posts: 7,693

    Jinx, maybeoneday, and nature_lover67,

    We're so sorry to hear of your diagnosis at such a young age! In addition to the amazing help you're already receiving here, you may be interested in checking out the Young With Breast Cancer forum to meet some others who have been diagnosed young, to discuss important issues pertinent to the under-40 crowd.

    We hope this helps. Please keep us all posted on how all of you are doing!

    --The Mods


  • lauragirl
    lauragirl Member Posts: 11

    Hi Jinx27, I got diagnosed with IDC 3 months ago. Im 25 years old and was in the midst of planning my wedding. Everything is on halt now, Im waiting to get done with treatments. Ive done a round of chemotherapy cycles and mastectomy. Initially It was very very tough for me too but you just got to get through the treatment.

    Like you said keep being positive though its easier said than done.We can get through this. Will keep you in my thoughts.

  • Gabby56b
    Gabby56b Member Posts: 32

    Optimist....I am about 6 months behind you. I was diagnosed on July 22. Had a lumpectomy and re-excision surgery. I am scheduled for a mastectomy in Oct followed 4 rounds on AC, 12 weeks on Taxol, then radiation followed by arimidex (sp). Most days I am really optimistic. it helps when I see posts like this of those who have already started down the path..

    thanks!

  • onepiece
    onepiece Member Posts: 1

    Hi All

    I just turned 25 and was diagnosed with invasive carcinoma with a tubular, low grade ductal carcinoma appearance earlier this year. This result came in from a breast excision biopsy I had. The original pathology report from my core needle biopsy for a fibroadenoma appeared to be only ADH but after the excision biopsy they found it to be IDC with unclear margins apparently. the pathology report states the carcinoma to be low grade, 0.3cm in size(which I understand is very small) with adjacent low grade DCIS. I had a re excision lumpectomy and had clear margin with 0 lymph nodes involved. I did radiation after surgery and have been on tamoxifen for 3 months. I have no family members who had any associations with breast cancer and my BRCA1 and 2 results are negative.

    I asked about Oncotype test but my oncologist said my tumor being 3mm is too small for the test?

    I was very shocked when I first discovered all this but I am optimistic most of the time! Best of luck to everyone on this board! Heart

  • farmerlucy
    farmerlucy Member Posts: 596

    onepiece - I hate that someone so young has to face this but very glad it was so small. You might consider calling Genomic Health about the size cutoff. I read on these boards that 3 mm is the cutoff. I am comforted in knowing my low recurrence score and I feel like it is a double check. Also in case you are not aware Color Genomics has a multi-gene test for $200 this month. I'm amazed and relieved to hear you found it so eatly.Take good care.

  • Jinx27
    Jinx27 Member Posts: 119

    Hey Ladies!!

    Thank you for your love! I love you all.

    My stage before was quite unknown but after speaking with an Oncologist she put me at 3b.

    My heart sank heavily, I will be starting chemo in two weeks, I have prepared my mind for a mastectomy and reconstruction even though my breast surgeon is confident about a lumpectomy. I just want them off. My tumor is hormone receptive and I'm not sure if the chemo will shrink it that much. But I will remain positive.

    Most days I have hope but today with the news about possible nodes, it just made me sad. The MO said that metastasis is likely if recurrence happens in the future.

    Most of my family thinks is early stage and its not I dont even know how to update people when they ask, the cancer being locally advanced hurts me to my core.

    Im gonna keep pushing!

  • 39andhip
    39andhip Member Posts: 8

    @ Jinx27 - Stay strong. This is so tough but you will make the right choices and get through this. Hang in there.

  • cindyee
    cindyee Member Posts: 1

    HI Jinx!

    I am in the same boat as you! I am 25 and was also diagnosed after labor day 09/08/15 with IDC.

    My Diagnosis: I have stage 1, grade 3, 1.1 x 1.4 x 1.1.cm in my left breast. ER+/PR-/Her2-

    I have't shared my story so far so here it go's,

    2 weeks prior to my diagnosis I woke up form a dream at 3am and somehow crossed my hand over my chest discovering a lump. Prior to this I would make regular breast check ups, because of previous radiation exposure at a young age due to a different childhood cancer. After, discovering my lump I booked an appointment at my clinic were I then got referred to a special breast clinic where I had my biopsy , ultrasound and a mammogram all in the same day. My test came back positive for BC. I have decided to get a bilateral mastectomy with skin/nipple sparing. I haven't decided on my recon. yet but I am between a DIEP flap and Implant surgery. I have 2 weeks to make a decision since my surgery scheduled for Nov 2.! So, any advice will help. My genetics test for BRAC1/ BRAC2 came back negative but they did found a abnormality in one of the genes. My genetic counselor said not to worry about it since they didn't have enough information and once they did they would contact me to see if its a harmful or non harmful gene.

    Good luck to you Jinx 27! and please share with us your journey as we can help support eachother and others who are going through the same. =)

  • Jinx27
    Jinx27 Member Posts: 119

    HELLO LADIES!!

    I wrote this post three months ago and wanted to come back and say THANK YOU for hearing me out and listening to me. I promise to do the same for others.

    Since Sept 2015, I have had surgery ( double mx with skin sparing reconstruction ) My final path report was very good according to the doctors. Only three nodes involved ( two were microscopic and one measured 1cm) the oncologist is almost certain that all cancerous nodes were removed. I'm set to have chemo (AC+T) then rads only to the left side and endocrine therapy.

    Back in September I thought my life was over! But this site really helped me realize that there is hope, REALLY! I have maintained a positive spirit and will remain that way.

    I love you all and wis everyone a happy holiday and joyous new year!

    Jinx27

  • 39andhip
    39andhip Member Posts: 8

    Jinx27 - Thanks for the update, and it is great to hear you sounding so upbeat. :)

  • kimm992
    kimm992 Member Posts: 28

    Just chiming in to say way to go!!

    I was diagnosed in October at 35 years old. It is scary for sure but the more I talk to people about breast cancer, the more positive stories I hear!

    It seems almost everyone knows someone who has had BC and is doing awesome now!

    We are going to be okay!!

    Sending love and positive vibes! Xo