need advice please help!!

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slinky1
slinky1 Member Posts: 12
edited June 2014 in IDC (Invasive Ductal Carcinoma)

Hi Ladies

I need your advice my friend has just been diagonosed IDC stage 2 and the lymph node under her arm was positive too. she has a small pea sized lump in her neck. we saw the doctor on thursday who gave us the diagnosis and the next appointment to see the bs is wednesday. she has been left with lots of questions but no one to answer them for her so i wondered if maybe some of you lovley ladies could help us ?? The symptoms started with shoulder pain and pain down her arm which is now getting worse she said its like an elastic band is round her arm and she cant bend properly, also she feels like her nipple is pulling ( maybe like shes breast feeding or using a breast pump).Sometimes the breast is rock hard and then sofens a little. does anyone know if this is normal for idc?? she is panicing because she has lymph node envolvement that the cancer has spread. it is very frustrating because its all a waiting game. She had a CT appointment come through but it is 2 weeks away is that normal time frame ?? Sorry to bombard you with all these questions but i really feel that i need to help her with some answers

thank you ladies lotsa love xxxxxxxxx

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  • ma111
    ma111 Member Posts: 1,376
    edited August 2011

    It is hard to answer a question like that without more information. How did they stage her without the CT results? I am also wondering what the lump in the neck is.

    Waiting is very hard. See if her ct can be moved up.

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  • slinky1
    slinky1 Member Posts: 12
    edited August 2011

    hi ma111 thank you for replying i dont know how they new they are sending her for a full body ct, chest mri and bone scan but only the CT has come through i have told her to ring ct in the morning and hopefully they can move it forward. the lump in the neck is just above the collar bone so i think it is a lymph gland ? hopefully we will have more info on wednesday when she see the bs

    xxxxxx

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  • ma111
    ma111 Member Posts: 1,376
    edited August 2011

    I hope the lump in the neck is not a lymph node.

    She may be looking at chemo first.

    Keep us posted.

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  • slinky1
    slinky1 Member Posts: 12
    edited August 2011

    yes defo chemo first they have already told us that but have no start date as yet

    thank you x 

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  • ma111
    ma111 Member Posts: 1,376
    edited August 2011

    I did chemo first. The one thing I would change is better treatment for side effects. There is medication to help when the fingers and feet go numb.

    I think she will be in good hands with a friend like you!

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  • KSteve
    KSteve Member Posts: 486
    edited August 2011

    slinky1 - The beginning is the hardest.  All the waiting and not knowing.  Just keep writing down questions, so when she does get with the BS she won't forget what she wants to ask.  It's so much information, so fast.  I, too, would see if the MRI could be moved up.  Also, are they talking about a PET scan?  That's an important tool as well.  That will show if any other areas of concern light up.  Are you going to the BS with your friend?  If she's willing, the more ears the better.  My best friend and my husband went to all of my early appointments.  It was so much easier to digest the information that way.  I also did chemo first.  It worked out great for me.  No cancer in any breast tissue or nodes by the time I did the BMX.  I wish your friend all the best as she starts this crazy journey.  She'll do great with someone like you by her side!

    Kathy

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  • slinky1
    slinky1 Member Posts: 12
    edited August 2011

    Hi Kathy thank you for replying to me. is a pet scan a bone scan ? also what is a BMX im new to this so learning every day !! unfortunalty i cant go with her because she has a little boy and im gonna look after him her partners going with her  but i have told her to have a little note book to write down queations as they pop in her head. and dont leave the bs until she has her questions answered. i agree its so much information to take in at one time. hope you are well and im glad that you are all clear hope you dont mind me asking but do you have to take tablets ? and does it still effect your daily life. Thank you so much xxxxxx

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  • ma111
    ma111 Member Posts: 1,376
    edited August 2011

    BMX= bilateral mastectomy. Pet scan is not a bone scan. It looks for cancer in distant areas of the body in soft tissue. Cancer will light up on them or they are called hot spots. It is done with a CT. The only do pet/ct when distant disease is suppected. Not all insurance companies will cover them them. They cost between $16,000 to $24,000.

    After spreading to the nodes, bone is the next most common place for spread. A pet/ct doesn't pick up small bone lesions. A bone scan will.

    Have her partner take notes and write down questions before they go. I forget to ask questions if I do not write them down. They will also give her written information.

    It does affect daily life. www.caring4cancer.com is a good place for treatment of side effects and when to call the doctor. www.cancer.gov is a good place for research.

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  • KSteve
    KSteve Member Posts: 486
    edited August 2011

    Thanks, ma111, for the explanation.  I didn't get  back online until now to see the questions from slinky1.

    Slinky1 -  To answer your other questions, I am doing great.  This weekend will be one year since my diagnosis.  What a fast year it has been.  I don't take any medicine at this point because I'm triple negative.  Hopefully she'll find out more complete pathology when she goes to the BS today.  I really do feel good now.  Still finishing up the reconstruction process, but everything else is done.  How old is her son?  I feel lucky that my kids were 16 and 19 when I was diagnosed.  They were a big help to me.  I'll be thinking of her today as she goes to the doctor.

    Kathy

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  • dogeyed
    dogeyed Member Posts: 884
    edited August 2011

    SLINKY, the little pea lump in her neck might be a swollen lymph gland indeed.  I'm in radiation now, and the doc told me they will go all the way up to the lymphs just above my collar bone.  Since they only removed 11 nodes, which 2 were cancer, they want to zap all the nodes that are left that may be involved with the breast cancer.  All my lymph nodes were enlarged when they first scanned me, but when they did a CT scan and bone scan in the beginning, the cancer had not spread.  I had chemo first, then surgery, and now radiation.  I hope her doc visit and results are enlightening and have some positive effect, and eventually both of you and her partner will adjust to what's going on.  The beginning can certainly be harrowing, but once any treatment begins, acceptance comes easier.  GG

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  • slinky1
    slinky1 Member Posts: 12
    edited August 2011

    hi Ksteve thank you for replying her son is two and a half hes so cute a little monkey but cute glad you are feeling better i imagine this year has been hard for you.

    MA111 thank you for explaining every thing to me i read a booklet from the hospital today and that explained a lot more too. we are in england so we dont pay its NHS and she is having all those scans the are bringing them forward and starting chemo straight away as its aggressive and the there is a possibility it has spread to the lymph nodes in her neck and may be her arm ?? thank you for thelinks i will have a look.

    she is much more positive today as she has had lots of her questions answered by the oncologist and she feels like shes going forward which is good.

    dogeyed- thank you for replying yes i think that the lump in neck is a gland but im hoping that if it is there is no more. the scans will reveal all i hope. her arm pit node is definatley positive. its all a

    lot to take in but im learning every day. im glad your on the road to recovery they said today is 6cms and its estrogen positive so im going to have a read up and see what that means tonight

     thank you all again

    xxxxx

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  • ma111
    ma111 Member Posts: 1,376
    edited September 2011

    Sorry to hear it might have spread to the nodes in her neck. Glad to hear she is starting agressive traetment in a timely manner. Sounds like they are getting her films quickly.

    When I was first dx, I felt a pulling and pain in my arm. It was from the involvement of the nodes in my axillia.

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