new to the board, scared and confused

Options
yellow78
yellow78 Member Posts: 82
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Hi,

I was just diagnosed with IDC last week, just had a lumpectomy with node removal yesterday and I am so upset.  I am waiting for the final pathology results on the tumor but my nodes were all clear.  I hate waiting.  I don't know what to expect next.  I am only 31 years old so the doctors tend to think this will be treated aggressively.  My husband and family are very supportive but I don't know how to explain to them how I am feeling. 

Any help or advice would be great.  Jenn 

· Share on FacebookShare on Twitter

Comments

  • youngmomof3
    youngmomof3 Member Posts: 156
    edited May 2010

    Hi Jenn,

    So sorry to hear about your diagnosis. I was just diagnosed in December at 36 yrs old and it was quite a shock and processing all of the information was very overwhelming.  My oncologist also wanted to be aggressive in his treatment esp since I am HER2+. Initially I was scheduled for a lumpectomy but then they found a second tumor so instead I am opting to have a bi-lateral mastectomy after I finished my chemo. Figured if my type of cancer was going to be aggressive I was going to have to be more aggressive to beat it.  As for your family they are probably processing it all as well and may take your lead on what you need from them.  I have found that even the most supportive people don't fully understand all of the thoughts, fears and questions that race through my head and that coming to these boards and sharing them with women going through the same stuff I am has been the most helpful. It helped me feel less alone on this journey and also helped me to see that my family and friends are going through alot as well.  I think you will feel better once your doctors lay out your plan of treatment. I wish you the best. Hang in there b/c for me the beginning with all of the unknown was the hardest.

    Take care,

    Tammy

    · Share on FacebookShare on Twitter
  • yellow78
    yellow78 Member Posts: 82
    edited May 2010

    Hi Tammy,

    Thank you.  I feel the same why with the agressive treatment.  I go tomorrow for my final results from the pathology of the tumor.  It has been a long few days.  It doesn't help that I am impatient.  I want to know what my treatment is going to be now and when I am going to start.  I haven't seen an oncologist yet so I am going crazy on why I haven't seen on yet.  This is such a hard process.  I am an avid runner so not being able to do much the last week has been tough.  Do you know how soon after surgery treatment starts?  Good luck with your treatment and I wish you the best as well.  Thank you, Jenn

    · Share on FacebookShare on Twitter
  • youngmomof3
    youngmomof3 Member Posts: 156
    edited June 2010

    Hi Jenn,

    I wish I had an answer as to when treatment usually starts after surgery but since i had chemo first with surgery to follow I have no idea. Did your surgeon set you up with an appt to see an oncologist? Maybe the surgeon wants to wait till you get all of your results back first. Hope your recovery goes by quickly and you are feeling better soon. 

    Take care and if you ever want to chat feel free to send me a private message.

    Tammy

    · Share on FacebookShare on Twitter
  • courageous41
    courageous41 Member Posts: 4
    edited June 2010

    I was just diagnosed with IDC last week.  My dr. said it's low grade and was very small.  The area was a 1cm mass, but only 10 mm of it was cancer.  I also have several microcalcifications I have had biopsied and they found LCIS. This is all in my left breast.  I also have a strong family history. My mother and grandmother, so my Oncologist/surgeon and myself decided bilateral masectomy was the way to go.  I still dont know if it's in my lymph nodes yet, I wont know until a day before surgery.  I meet with the plastic surgeon today to talk about breast reconstruction. I am a bit scared for all I have been reading is how painful it is.  Anybody have anything GOOD to say about Expanders and reconstruction. How long is the recovery process, and how long are you in pain?

    · Share on FacebookShare on Twitter
  • knudsmede
    knudsmede Member Posts: 2
    edited June 2010

    Hello Tammy.

    Just reading your post and I had surgery first for IDC and then had to wait for 6 weeks after surgery.  I was told this is a better way to handle chemo.  Also for me the lymph nodes weren't affected but the cancer had gotten into a blood vessel, so the faster they took that breast off the better for me.  I am now 1 year from last chemo and 18 months from the mastectomey/reconstructive surgery and so far all is well.

    Attitude, family and friends are so important during this journey.  Stay strong and try to laugh as often as possible.

    Debbie 

    · Share on FacebookShare on Twitter
  • swanseagirl
    swanseagirl Member Posts: 393
    edited June 2010

    Jenn, Hang in there..............

    I go in for surgery tmorrow for a lumpectomy.  It has been less than 3 weeks from mammo, biopsy, mri and surgery.

    My husband and kids have been so supportive, however, unless you have been diagnosed with cancer, noone really knows how you feel.

    This sight has a wonderful supportive group.  Over the last few weeks, I have cried and cried some more.

    Like you I am anxious to know what treatment I will have and playing the waiting game is the hardest.  I call it "No Mans Land".

    My surgeon told me to hold off on talking to an onc, until they go in and remove the lump and test the nodes. Once again, the waiting game.

    Have strength and know there are so many wonderful people on this site to help you on your journey.  As I know I will be helped also.

    Hugs to everyone on this thread!!!!!!!!!!!!!!!!!!!!!!!!!!!

    · Share on FacebookShare on Twitter
  • yellow78
    yellow78 Member Posts: 82
    edited June 2010

    Hi Everyone,

     Thank you for all your support.  I go next week to meet with the oncologist.  I got my final pathology report last friday.  The surgeon said that it was very aggressive grade 3, stage is either 1 or 2, it did not go to my lympths.  The good news is that I seem to have caught it early but since I am only 31 years old and the tumor was grade 3 I am looking at chemo.  I don't mind because I want them to treat this aggressively if it gives me a chance to not get it again.  As for support I have so much of it but when my husband and I told everyone the news that it did not spread everyone including my husband were saying thank god it did not spread you were very lucky.  When I told them they didn't understand and  that I was still upset they all looked at me as if I was nuts.  Granted I am very thankful it did not get into my lympths but I still have cancer and nothing seems to make them understand that.  I feel as if I can not even get upset because they think I am being ungrateful.  I keep on telling them THEY DO NOT Understand what I am going through.  I am 31 years old with cancer.  That isn't good to me. 

     I know my husband thinks he can just fix things but this he can not.  This happened and it makes me upset and sad.  Has anyone else experienced this same kind of emotion?  I feel like I am living someone elses life.

    Thanks, Jenn

    · Share on FacebookShare on Twitter
  • chrisct
    chrisct Member Posts: 2,662
    edited June 2010

    courageous41 - there is a thread called Exchange City which has a lot of great info on the process of getting implants.  Lots of very supportive and knowledgeable ladies there who can answer your questions about the process.  (not sure if this link will work, but you can copy and paste)

    http://community.breastcancer.org/forum/44/topic/728266?page=486

    Wishing for minimal side effects for those who will have chemo  and smooth surgeries and easy recoveries for those having surgery.    (((((((HUGS))))))))

    · Share on FacebookShare on Twitter
  • thegoodfight
    thegoodfight Member Posts: 560
    edited June 2010

    Hi Jenn,

    BTW, you and just a few others spell the Jenn with two n's like my daughter.  It never occured to us to only use one n when she went from Jenny to Jenn, although I now realize the common spelling is one n.  The other reason I feel a closeness to you is that my daughter will be 33 this month, so you are also close in age.

    Now on to what you are feeling.  It is all normal.  Cancer is a big deal.  Some of us are luckier than others with our diagnosis, staging, etc., but make no mistake it is cancer.  From the day the words are spoken by your doctor NOTHING is the same again.

    Be happy that it seems to be early.  I was considered early also, grade 3, stage 2A.  I am almost two years out and I now know I can never go back to life as it was before.

    I had a lumpectomy ( actually two, second primary found just before I started treatment) did chemo and 35 sessions of rads.  I am now on arimidex, four more years to go.  I am a lot older, just turned 65, but emotionally we are close.  Yes, I did have the benefit that my family was grown and I know I am blessed that they are on there own.  Infact, they were my lifeline and got me through the toughest moments.

    My point is ( I know I am rambling) is that yes, I know I am one of the lucky ones.  Yes, I hope I live my life without any recurrance.  BUT,  it is a tough life.  For the rest of my life I now know that every "little" thing that comes up is a big thing.  Here is my last month to give you an example.  My liver enzymes are elevated.  They continue to rise with each retest so last week they did a liver ultra sound.................no lesions or malignancies.  Still no answer though.  At yearly gyn we talked about what appeared as a swollen lower rib area.  Went for xrays of chest and ribs..........negative.  Oncologist said go for exam with breast surgeon.  He said let's do a bone scan........................negative for disease, just tons of arthritis.  Whatever comes along is now a big deal that sends you for all kinds of tests.  They are always ruling out more cancer, because we are cancer patients.

    My point of all this is they need to understand that your life and their lives with you have changed forever.  My husband wants it all to be all right now, because I am okay.  Done treatment, hair back, etc., LIFE IS GOOD.  But he knows only too well that the roller coaster pulls up now and again and we have to get on for another ride.  It is what it is.

    I am not trying to be negative, infact, just the opposite.  I am saying it is okay to own your feelings and to ask for those around you to try and understand.

    I  wish you great health ahead and not too many rides on the coaster.......................Caren

    · Share on FacebookShare on Twitter
  • Sarah7
    Sarah7 Member Posts: 2
    edited June 2010

    Hi Yellow 78,

     I was diagnosed with  breast cancer end of April - a small malignant tumur (6.6 mm) surrounded by DCIS that "seem to skip around".  My doctor recommended a lumpectomy followed by radiation and anti-hormone treatment.  She said the trick of the surgery was to take out as much as needed, without taking out too much breast - and this would be difficult due to the non-defined borders of the cancer.  After the lumpectomy, I was given a "Stage 1" rating, as nothing spread to the lymph nodes, and med. aggressiveness.  a hematoma developed 36 hours after the lumpectomy, and they had to do a drainage to remove the blood that had collected in the breast (breast very swollen, hard and painful, no fun.  Apparently only happens in 1-2% of all case).  I did not have clean margins, so they went in for another try a week later - unfortunately had the hematoma again 33 hours after the OP, and had to have another drainage (all under full anasthesia), so 4 OPs within 3 weeks, was rather exhausting to say the least.  They don't know why I had the heatoma twice, and think I may have a problem with my blood coagulation.  This is now being tested in detail.  Has anyone ever had this problem?  more than once???

    I have received my 2nd  OP results - and there are still more DCIS cells in my breast - apparently everywhere now, and they are recommending MX with immediate reconstruction using implants, a I do not have enough body fat to use my own tissue.  I am scared and nervous - not really about the cancer at this point, more about losing my breast, having to deal with an implant (it seems like there are so many problems with them, both silikon-gel and saline based), and am scared of having more bleeding problems in a bigger surgery.  Who has experience with which types of implants?  what experience have you had (hopefully positive!).   

    I have been doing a lot of research on the net, and my husband - thought he has been very supportive, rthinks I am crazy to spend so much time  on the web, says I will only get more confused.  I live in Europe, and am so happy to have access to American hospitals, clinics, websites and forums.   

    I think it is impossible for anyone to understand how we feel, not having gone through the same thing.  I feel like a totally different person than I was a month ago - am convinced that this has come as a signal for me to change my life, and am determined to do so (mainly work related).

     Stay strong and do whatever makes you feel good .  . . Sarah7 

    · Share on FacebookShare on Twitter

Categories