New here--questions

kmygil
kmygil Member Posts: 876 Member
edited March 2014 in Breast Cancer #1
Hello Everyone,

I am new to the breast cancer board, but not to the colon cancer board. However, my sister was recently diagnosed with Stage 3 breast cancer, nodes involved and tested positive for HER2neu. Her tumor went from 1.6 cm to 7 cm in one month. This is very aggressive and very scary.

Another really scary thing is that she lives in Denmark under the social health care system. They still haven't given her results from her chest X-ray--done over a month ago! They're also talking lumpectomy once the tumor has shrunk. Is that even an option when you have axillary nodes involved?

Finally, I believe she is in a state of exquisite denial. When I asked her what drugs she was being given, she answered, "A red one and a clear one." She has done no reading about her disease and treatment--not even the pamphlets on what to expect at chemo (which she refuses to let us call chemo; we must say "treatment".) She was told that her hair would fall out, but she acted shocked and surprised when it did.

It is really hard with her living abroad. Her daughter is 18 years old, but not very mature. I'm at my wit's end. Any suggestions?

Kirsten

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    Hello, semi-colon! You found my other haunt!!
    Hey, Kirsten...soooo sorry you have this to deal with, too..

    As far as your sister's attitude. Well, people react differently to the cancer news. This doesn't make it easier to deal with, when you know the risks like you do, but it's the way that it is.

    I'm scratching my head, tho...stage 3 breast is like stage 3.75 colon. I'm surprised they are not being more active on it...but, then again, you are only hearing what your sister is telling you...

    Can you get the name and phone number of her oncologist there? If you dial 1010229 before the country code, the cost of the call is about 1/2 cent per minute. Then, you can ask. Of course, identify yourself as her sister.

    I will say that the 'red stuff' is probably Adriamycin, and the clear, probably Cytoxen. This is the 'gold standard' first step for breast cancer, but I am a bit worried about the HER2/NEU positive. This makes chemotherapy a bit less successful, I'm told.

    Why don't you call ACS....1-800-ACS-2345. Explain the situation, as you know it, and ask about general guidelines. Don't be surprised if they won't help you beyond that, HIPPA, you know, but at least you could ask "Is Adrimycin/Cytoxin a good combo for HER2/NEU positive cancer?"

    Remember, I will be in Holland after the 25th...till the middle of January...if you need me...

    Hugs, Kathi
  • KathiM
    KathiM Member Posts: 8,028 Member
    #3
    KathiM said:

    Hello, semi-colon! You found my other haunt!!
    Hey, Kirsten...soooo sorry you have this to deal with, too..

    As far as your sister's attitude. Well, people react differently to the cancer news. This doesn't make it easier to deal with, when you know the risks like you do, but it's the way that it is.

    I'm scratching my head, tho...stage 3 breast is like stage 3.75 colon. I'm surprised they are not being more active on it...but, then again, you are only hearing what your sister is telling you...

    Can you get the name and phone number of her oncologist there? If you dial 1010229 before the country code, the cost of the call is about 1/2 cent per minute. Then, you can ask. Of course, identify yourself as her sister.

    I will say that the 'red stuff' is probably Adriamycin, and the clear, probably Cytoxen. This is the 'gold standard' first step for breast cancer, but I am a bit worried about the HER2/NEU positive. This makes chemotherapy a bit less successful, I'm told.

    Why don't you call ACS....1-800-ACS-2345. Explain the situation, as you know it, and ask about general guidelines. Don't be surprised if they won't help you beyond that, HIPPA, you know, but at least you could ask "Is Adrimycin/Cytoxin a good combo for HER2/NEU positive cancer?"

    Remember, I will be in Holland after the 25th...till the middle of January...if you need me...

    Hugs, Kathi

    Another thought....
    Could you 'enlist' your neice to keep you filled in? I know, you said, she is not very mature...but my developmentally disabled daughter became my caregiver for my cancers, and she grew up quickly and handled the responsibility beautifully.

    Make her 'part of the treatment team'....she doesn't want to lose her mom, I'm sure...

    Hugs, Kathi

    BTW, check out the post 'Starting Abraxane and Herceptin...' below here....Herceptin is for HER2/NEU positive...GREAT responses (as usual..lol!)
  • kmygil
    kmygil Member Posts: 876 Member
    #4
    KathiM said:

    Another thought....
    Could you 'enlist' your neice to keep you filled in? I know, you said, she is not very mature...but my developmentally disabled daughter became my caregiver for my cancers, and she grew up quickly and handled the responsibility beautifully.

    Make her 'part of the treatment team'....she doesn't want to lose her mom, I'm sure...

    Hugs, Kathi

    BTW, check out the post 'Starting Abraxane and Herceptin...' below here....Herceptin is for HER2/NEU positive...GREAT responses (as usual..lol!)

    Aha!
    I wondered where you were when you weren't being wonderful to other semi-colons!

    I really appreciate the information. Of course I got on the net & read as much as I could, but I am totally not clear about how breast cancer is staged and what treatment protocols are designed for which stages. Other than Stage III, she has not clarified. I don't think she even listens to her oncologist. Her surgeon-to-be refuses a CT scan saying "they try to maintain radiographic hygiene." I've never heard such nonsense in my life. Her oncologist puts everything on post-it notes and doesn't seem to be very organized.

    You know, I'd rather talk to you via e-mail, since I don't know if my sis will eventually arrive here. Is that ok with you?

    Kirsten
  • KathiM
    KathiM Member Posts: 8,028 Member
    #5
    kmygil said:

    Aha!
    I wondered where you were when you weren't being wonderful to other semi-colons!

    I really appreciate the information. Of course I got on the net & read as much as I could, but I am totally not clear about how breast cancer is staged and what treatment protocols are designed for which stages. Other than Stage III, she has not clarified. I don't think she even listens to her oncologist. Her surgeon-to-be refuses a CT scan saying "they try to maintain radiographic hygiene." I've never heard such nonsense in my life. Her oncologist puts everything on post-it notes and doesn't seem to be very organized.

    You know, I'd rather talk to you via e-mail, since I don't know if my sis will eventually arrive here. Is that ok with you?

    Kirsten

    Sure...and easier in Holland....
    No other cancer has a stage 0 that I know of...so, actually, breast cancer has 5 stages...

    As far as the radiation...not that I am a radiologist, mind you...but I understand that once the tissue has been radiated, it takes a loooooong time to recover enough to even contemplate surgery...so, if this is pre-surgical treatment...well, they could be trying to be conservative.

    Many of the board here has had HER2/NEU positive cancer. There is a drug called Herceptin that is just for this. That is why I suggested the Abraxane/Herception post back a ways here....there is LOTS of knowledge and experience here with it. I don't know the ratio to this and mastectomy, but, well, if that word has been mentioned to your sister, she may just be freaking because of that....losing a breast, even the threat, is worse that losing a piece of colon (believe it or not...I remember it well....).

    I will send you, via private message, my 'real' e-mail....

    Hugs, Kathi
  • kmygil
    kmygil Member Posts: 876 Member
    #6
    KathiM said:

    Sure...and easier in Holland....
    No other cancer has a stage 0 that I know of...so, actually, breast cancer has 5 stages...

    As far as the radiation...not that I am a radiologist, mind you...but I understand that once the tissue has been radiated, it takes a loooooong time to recover enough to even contemplate surgery...so, if this is pre-surgical treatment...well, they could be trying to be conservative.

    Many of the board here has had HER2/NEU positive cancer. There is a drug called Herceptin that is just for this. That is why I suggested the Abraxane/Herception post back a ways here....there is LOTS of knowledge and experience here with it. I don't know the ratio to this and mastectomy, but, well, if that word has been mentioned to your sister, she may just be freaking because of that....losing a breast, even the threat, is worse that losing a piece of colon (believe it or not...I remember it well....).

    I will send you, via private message, my 'real' e-mail....

    Hugs, Kathi

    Thank you!
    Thanks Kathi. My younger sister and I are completely at sea. Their health care system is so different from ours and we frankly don't trust it. For example, her doctor never suggested to her that she should have a mammogram--she's almost 54. Never even suggested that she do self-exams. To me that's a big duuuhhhh. One of the many things we can't seem to wrap our heads around....

    I appreciate your input a LOT. You are so knowledgable about these things, and info from the net can get muddled and overwhelming. I'll wait for your e-mail.

    Hugs,
    Kirsten

Discussion Boards