Recently diagnosed with IDC in right breast

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  • Mini1
    Mini1 Member Posts: 1,836
    edited August 2012

    I didn't know that. Maybe some people want their grey hair and want a grey hair wig. Besides, I dye my hair all the time. They can't dye it? Oh well. Good thoughts anyway.

  • bearcub
    bearcub Member Posts: 485
    edited August 2012

    I will double check, but I remember checking it out about a year ago when I considered cutting my hair.  My daughter-in-law at the time had sent hers in, and I thought it was a beautiful thing to do...I will let you know what I find out.

  • bearcub
    bearcub Member Posts: 485
    edited August 2012
    Okay, apparently they do take gray hair, but they won't use it.  They sell it to manufacturers, to offset there costs.  They also will not take hair that has been bleached or highlighted...something to do with chemical reactions.Frown
  • Mini1
    Mini1 Member Posts: 1,836
    edited August 2012

    So if it's not used for wigs, what exactly are manufacturers doing with it? Kind of weird. This day and age they are coloring their hair younger and younger. If they don't take dyed/highlighted hair, they are going to be missing out on a huge group of donars.

  • bearcub
    bearcub Member Posts: 485
    edited August 2012

    I totally agree..I have no clue what they would be doing with the hair.   It is weird.

  • Mini1
    Mini1 Member Posts: 1,836
    edited August 2012
    Kind of creepy, isn't it? Are there people with fetishes that will pay for it? lol Makes me leary of anything stuffed now.  Tongue out
  • lisa2012
    lisa2012 Member Posts: 652
    edited August 2012

    Very curious indeed...

  • jaimeone23
    jaimeone23 Member Posts: 1
    edited August 2012

    I understand. Waiting is the hardest part. I am 35 and was diagnosed with Idc 6/29. My tumor was very large, I forget size, but to large to spare my breast. 7/18 I had surgery. I decided on a mastectomy, then ended up with a double since I am braca2 pos. I also have tissue expanders in. Sucks! My recent pet scan yesterday before chemo reveled affected lymph node, so here we

    go for another surg. Hopefully I can get the chemo and be done with it all. Don't stress. You will be fine. I too am a mommy, that's where you will find your inner strength.

  • Neta69
    Neta69 Member Posts: 203
    edited August 2012

    I will see the MO tomorrow and the RO on Friday. Hopefully find out treatment plan and get started soon. Nervous tonight about facing more delays. Maybe if I feel there is a plan and something is happening then I'll be able to sleep...



    Jamieone23 Sorry to hear you need more surgery. Do they usually do scans before chemo?

  • Onelife2012
    Onelife2012 Member Posts: 26
    edited August 2012

    Hi Ladies,

    Saw my BS today to recieve the path results. Turns out the tumour wasn't your average garden variety but has a rare componet to it. It is a Neuroendocrine Subtype. Apparantly very rare in the breast. These types of tumours usually live elsewhere in the body .....so , it has been sent away to a specialist in Pathology to figure out why I had it growing in my breast and hopefully get some clues as to what caused it. The path says that it could have been from my original tumour 11 years ago or a new tumour or it could be from the Chemo or Radiation. My surgeon has ordered ultrasounds of my abdomen to check there are no others as they like to settle on livers and stomachs. He also ordered ultra sounds of my lymph nodes and chest. He did say that there was no reason that this type of tumour should change my treatment plan......whatever the Oncologist decides is best. I am hoping to still get away with Tamoxifen only.

    So, fingers crossed it all comes back good and that this tumour does not affect my outcome. 

    So..yay for me! My husband was optimistic but I feel like crap. Wish it could have been nothing different. Has anyone else heard of Neuroendocrine Subtype tumours? Would feel better if I knew more about it.....knowledge is power!

  • Mindy703
    Mindy703 Member Posts: 30
    edited August 2012

    I am just trying to find someone on here to talk with!!!! I just got a phone call at 2:00 that I have Idc on the left breast ,grade 2. I am now worried it has spread to my liver. Because I have had an enlarged liver and middle back pain(not really pain but a feeling). I went to the doctor 4years ago about these symptoms, but they said yes I have an enlarged liver but the levels (I guess liver enzymes or something) were within normal. So I have lived with these symptoms. However, now with the dx of Idc I am wondering is it liver cancer. So terrified. I wish someone in my shoes could talk with me. Anyone had Idc that ended up with it in the liver?? Symptoms? Could it be in liver before I found it in breast?

    Thanks

  • Infobabe
    Infobabe Member Posts: 1,083
    edited August 2012

     Onelife2012

    Mindy703  

    I think the reason why you two sisters have not had a response it because only a doctor's expert interpretation can give you any good answers.  We are too inexpert to say anything. 

    Onelife, Neuroendocrine Subtype tumours are rarely found in the breast, if ever.  It is going to take some deep thinking for your doctors to figure it out.

    Mindy, if you had this problem with the liver 4 years ago, don't you think it would have made itself obvious before now if it were cancer? 

    Our not responding doesn't mean we don't care.  We just don't know. 

  • Mindy703
    Mindy703 Member Posts: 30
    edited August 2012

    Infobabe,

    I am hoping.(about the liver and fours years ago) although it has been a chronic since then and gotten worse in the last year. Thanks for the response. Somehow any response makes me feel better than none.

    Mindy

  • Infobabe
    Infobabe Member Posts: 1,083
    edited August 2012

    Mindy703

    I wish I could sit with you and hold your hand. 

    When do you see your doctor?  Come back here and let us know what happens. 

  • Mindy703
    Mindy703 Member Posts: 30
    edited August 2012

    I see the surgeon tomorrow @ 2:30. I will let u know what he says. I wish you could be here with me too. Like I said I feel better when I talk to someone who is in "the club" !



    I don't know why I feel compelled to tell you this, probably because it is what upsets me most but...... I am a mother of three children. 11, 9, and 5. I am sure every mother feels the same but they are who am am worried the most about. My husband just keeps saying "be positive" ha, easy for him to say. Well thanks again for the response.

    Mindy

  • Infobabe
    Infobabe Member Posts: 1,083
    edited August 2012

    I know you are going through emotional torture right now.  You are seeing your doctor soon and will have some answers.  Then you can chart a course of action and your mind will settle down.

    I also understand your fears of leaving your little ones behind.  That is not going to happen.  You will do what is necessary and see those sweet children grown up and on their own.  This is just a bump in the road.  Next year, it will all be history.

    It is hard to get your husband to understand what you are going through.  If at all possible, he should accompany you to all appointments.  He will understand more and be a second pair of ears to remember details you might miss. 

    It is hard to give you a hug over the Internet, but here is one anyway.  HUGS 

  • Mindy703
    Mindy703 Member Posts: 30
    edited August 2012

    Thank you! Let u know more tomorrow.

    Mindy

  • Mindy703
    Mindy703 Member Posts: 30
    edited August 2012

    Saw the surgeon today. He made me feel a lot better. Was worried I had cancer all over my body. He said more tests have to be done but didn't see anything towards that direction. He thinks I should do chemo first then surgery. Depending on more test results but......Of course like everything with this it is waiting game. Did genetic test in the office, MRI is tues. I may actually get some sleep tonight! Oh yeah I need to update my dx but it is IDC, grade2, er+\pr+, her2-' not sure what stage yet.

  • Infobabe
    Infobabe Member Posts: 1,083
    edited August 2012

    Mindy703

    So glad you are getting some answers.  Put some of those liver cancer ideas to rest.  As everyone says, waiting is the hardest part.  Not knowing is just as bad.

    Keep us updated and good luck with that MRI. 

  • lisa2012
    lisa2012 Member Posts: 652
    edited September 2012

    I'm with you too,mindy and onelife. It is tough to be plunged into medical panic, I know I was shocked by it and it is freaky and surreal. Infobabe is right, once your docs are clearer about what the deal is it helps. It still stinks but you get to move into action.

  • Mindy703
    Mindy703 Member Posts: 30
    edited September 2012

    Lisa,

    I just saw your post. I am excited when I get one. I havent been on here in the last couple of days. We went to the lake to try to keep busy and for me be quote unquote "normal". I am doing an MRI today at 7:30 a.m.. It is 4:50 a.m. right now. I cannot sleep. I am leaning towards chemo first, then surgery. What was chemo like for you? I have long hair and am so sad to think of it falling out. Of course I can't stand being nauseated. Did you have all these symptoms? Did you work? Were you exhausted? so many questions. What made you decide to get the ovaries removed? I see alot of women here have elected to do this. How do you feel overall? You are essentially a year ahead of where I am. Thanks for any response.

     Mindy

  • Mindy703
    Mindy703 Member Posts: 30
    edited September 2012

    Lisa,

    I just saw your post. I am excited when I get one. I havent been on here in the last couple of days. We went to the lake to try to keep busy and for me be quote unquote "normal". I am doing an MRI today at 7:30 a.m.. It is 4:50 a.m. right now. I cannot sleep. I am leaning towards chemo first, then surgery. What was chemo like for you? I have long hair and am so sad to think of it falling out. Of course I can't stand being nauseated. Did you have all these symptoms? Did you work? Were you exhausted? so many questions. What made you decide to get the ovaries removed? I see alot of women here have elected to do this. How do you feel overall? You are essentially a year ahead of where I am. Thanks for any response.

     Mindy

  • Infobabe
    Infobabe Member Posts: 1,083
    edited September 2012

     Mindy703

    How did that MRI go? 

  • Mindy703
    Mindy703 Member Posts: 30
    edited September 2012

    Well MRI was a little freaky. But I got through it. I am just now anxious to hear any results. Kinda want to hear and kinda don't. I do not want any more bad news. However, ready to get the show on the road so.......



    Thanks for asking. I feel like you are my friend. What is your name? If you don't mind me asking.



    Thank you , thank you,

    Mindy

  • bearcub
    bearcub Member Posts: 485
    edited September 2012

    Hoping for great MRI results Mindy....

  • Mindy703
    Mindy703 Member Posts: 30
    edited September 2012

    Bearcub,



    Thank you. I see your dx but not your treatments. Where are you in this process? Hope you are doing well.



    Mindy

  • bearcub
    bearcub Member Posts: 485
    edited September 2012

    I had surgery partial mastectomy and SN biopsy July 12th, and I think because of short staffed summer vacations I am getting my first infusion finally of AC this morning, 4 rounds every three weeks, then rads, and Herceptin for a year... Tamoxifen for 5 years....I had clear margins.

    I have no clue what to expect but am not too nervous....I am ready to get this over with..keep us updated



  • Mindy703
    Mindy703 Member Posts: 30
    edited September 2012

    Sorry just getting back. I have been busy working, kids activities, and of course doctor appts..

    Anyway, breast surgeon wants to do neoadjuvent therapy. Chemo first. You or anyone have some advice on this? He makes some very good points. Waiting on oncotype dx. He said more than likely this will come back as intermediate or high risk, therefore wants to do chemo first. BS is scheduling surgery and chemo. Then when tests come in we will

    Proceed accordingly but he knows I DO NOT want to wait any longer than I have to. So, setting both up as not to loose time.

    If I do chemo first you will be two weeks ahead of me on the treatments. You can help me through it. Since you will be experiencing it right before me. We definitely have to keep in touch. Doc said if we do chemo my port will be put in the 18th. Then treatment a few days after.

    Keep me posted. How do you feel right now? I am thinking of you.

    Mindy

  • bearcub
    bearcub Member Posts: 485
    edited September 2012

    Just starting day 3 post AC and I feel totally normal, staying on top of meds for nausea.

    I did wake up at 3 am yesterday and couldn't go back to sleep but slept great last night.

    I keep expecting the fatigue to set in, maybe when the meds are done. Will keep you posted.



    Hang in there!

  • Mindy703
    Mindy703 Member Posts: 30
    edited September 2012

    Bearcub,



    That is great. I am glad you are feeling well. What are you doing in the area of your hair? I have medium to long hair and always have. That is a big concern to me. Also, do you work? If so have you been able to keep up with work? Any kiddos? You may have mentioned these things earlier but......

    Mindy

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